Citation
Life sustaining technologies and the elderly: prolonged mechanical ventilation

Material Information

Title:
Life sustaining technologies and the elderly: prolonged mechanical ventilation
Series Title:
Life-sustaining technologies and the elderly
Creator:
Goldberg, Allen I.
Publisher:
U.S. Congress. Office of Technology Assessment
Publication Date:
Language:
English
Physical Description:
320 pages.

Subjects

Subjects / Keywords:
Artificial respiration ( LCSH )
Respirators (Medical equipment) ( LCSH )
Older people --medical care -- United States ( LCSH )
Chronically ill -- Care -- United States ( LCSH )
Genre:
federal government publication ( marcgt )

Notes

General Note:
This report aims to identify the tasks assigned by the OTA and their major sections. The issues of concern to the OTA, and those who make contributions to their discussion, are shown.

Record Information

Source Institution:
University of North Texas
Holding Location:
University of North Texas
Rights Management:
This item is a work of the U.S. federal government and not subject to copyright pursuant to 17 U.S.C. §105.
Classification:
Y 3.T 22/2:2 L 62/v.1/pt.1/prolon. ( sudocs )

Aggregation Information

IUF:
University of Florida
OTA:
Office of Technology Assessment

Downloads

This item is only available as the following downloads:


Full Text

PAGE 1

"'I TJJ.\~ 2 L lP1 v., / p+ .1 I p Ni \of). OTA Contract 533-493~.0 October 15, 1985 On 4/9/85, I received a request from the Congress of the United States, Office of Technology Assessment, to propose how comprehensive infonnation could be obtained about prolonged mechanical ventilation in the U.S.A. This documentation was needed for a more global report due in Congress by Spring, ~986: Life Sustaining Technlologies and the Elderly. It was clear to me, and those with whom I network, that the anticipated time was near for public policy debate that would detemine what system, if any, would be put in place to benefit the ventilator-assisted individual. For over 5 years, I and other members of Care for Life have been making efforts to increa.se awareness about care for life-supported persons. There fore, it was with gratitude and humility that I accepted this challenge for all those contributors who made the conmittment to meet it. The enclosed document represents a very major initiative to create knowledge which never before existed. However, this has been exactly what Care for Life ha~ done over and over again in its short five year history. It has been our hope that someday a workable system will be put in place for the person who requires life-supportive technology. webelieve that such an individual represents complex medical and social issues; what is put in place can serve as a model for other complex challenges of modern living. I am proud to offer the final report to the OTA with the hope that its content will help the OTA create a statement of truth. The wish of all contributors is for a properly fnfonned public policy. We are all grateful to the OTA for this opportunity to serve. Allen I'.. Goldberg, M.D. A NOT-roR-fROFIT CORPORATION P.O. Box 14612. Chicago, IL tlJ6ff : (312)~ DOClMENTATION EOUCAllON DEMONS1RATION

PAGE 2

j 0 U Ol
PAGE 3

l. .. SPECIAL ACKNOWLEDGEMENT I want to express .my gratitudP to Frank L. Seleny, M.D., Head, Department of Anesthesiology, Children's Memorial Hospital, Chicago for his limitless faith in and encouragement of my work. I also appreciate the support given to me by the members of the Departments of Anesthesia and Pediatrics, and the Adminstration of Children's Memorial Hospital. Finally, I want to sincerely thank Pat Peano for her efforts to prepare this manuscript for OTA which were far beyond any call of duty. \ i

PAGE 4

( .. Care for Life Contract 533-4935.0 LIFE SUSTAINING TECHNOLOGIES AND THE ELDERLY PROLONGED MECHANICAL VENTILATION TASK 1. OUTLINE October 15, 1985 Prepared By: Allen I. Goldberg ( 000201

PAGE 5

( ( OTA Task 1 10/15/85 Contract 533-4935.0 0 0 0 _"; O ~) -1-. ,,_ ... LIFE SUSTAINING TECHNOLOGIES AND THE ELDERLY PROLONGED MECHANICAL VENTILATION The following outline will identify the tasks assigned by the OTA and their major sections. The issues of concern to the OTA, and those who made contribu tions to their discussion, are shown. Please refer to each task for a tab.le of contents and a description of the qualifications of the contributors. Task 2. Description of Mechanical Ventilation and Its Application A. Review development of the technology and its use 1) HJstorical perspective in the U.S.A. (Affeldt, Alba, Goldberg, Laurie) 2) Definition of key-concepts (Goldberg) 3) Goals of ventilator care (Goldberg, lndihar) 4) Characterize range of patients-adult experience (Alba, Indihar) B. Describe variety of modern equipment and settings used 1) How ventilators work (Goldberg, Indfhar) 2) Alternative methods; comparison of available mechanical devices; indications and contraindications (Alba) 3) 4) 5) 6) Patient-Machine Interface (Goldberg, Indihar) Monitoring technology (Goldberg, lndihar) Preferred technology for elderly (Alba, Goldberg, lndihar) Complexity of equipment; feasibility of self-care, care by nonprofessionals (Alba, Goldberg, Indihar)

PAGE 6

( ( .. OTA Task 1 Contract 533-4935.0 10/15/85 -2 000203 Task #2 was assigned to contributing authors as indicated. An attempt was made to invite an interdisciplinary group to be certain that it had included the perspectives of pulmonologists, rehabilitation specialists, intensi vfsts, nursing, allied health personnel, and consumers. The task was also assigned to selected organizational leaders to be certain that it presented a balanced opinion. Task 3. Data on Utilization and Cost: A Survey* A. Prevalence data (by age) 1) Acute primary diagnoses 2) Secondary diagnoses and circumstances 3) Specific chronic illnesses B. Incidence data 1) By age (under 65 and elderly subgroups) 2) By other major variables 3) By care settings and age Appendix includes tabulation of survey data and connnentary from key informants, selected experts, and related organizations. 3

PAGE 7

( I \ OTA Task 1 Contract 533-4935.0 10/15/85 3 00020.t C. Prevalence/incidence data interpretation 1) Evidence of care-rationing based on age 2) Evidence of unmet needs, unjustified use of technology, inefficient use of settings (re: elderly) 3) Utilization trends (past, present, future); implication for home care (re: elderly) D. Cost-reimbursement data from health care providers (re: care setting, duration of treatment) 1) Total treatments costs per patient (by age group) 2) Costs paid by patients (self-pay) 3) P~blic reimbursement (Medicare, Medicaide, Veteran's Administration) 4) Private sector reimbursement (private insurance, Blue Cross) 5) Other reimbursement (private agencies, foundations, self-insurance, 'HMO, etc). E. Cost-reimbursement data interpretation 1) Evidence of insurance coverage or ability to pay as factor in obtaining care 2) Impact of reimbursement regulations on utilization and cost 3) Cost trends (past present future) The time and budgetary constraints of this OTA project limited survey efforts to Task 3. The Center for Health Administration Studies, University of Chicago, was asked to coordinate a multi-contributor y

PAGE 8

.. ( \ OTA Task 1 Contract 533-4935.0 10/18/85 -4 000:205 effort. Those responsible for the survey design, implementation, and analysis were: Ronald Anderson, Lu Ann Aday, Marlene Aitken, Susen Dunmire (Center for Health Administration Studies University of Chicago) with the assistance of: Candice C~ark (Montclair State College, Montclair, NJ) Bernard Goldstein (Dept. of Sociology, Rutgers University, New Brunswick. NJ) Sam Giordano (American Association for Respiratory Therapy, Dallas, TX) Heward Robboy (Trenton State College, Trenton, NJ) Key infonnants (institutions, settings, organizations) and contacts surveyed included the following: Organization Location Contact Settings Boston University Boston, MA Barry Make Rehabilitation Nursing Hc,me Home Care Gaylord Wa 1_1 i ngford, CT R. Ferranti II ti S. Flores Goldwater Memorial New York, NY Augusta Alba II II Hospital Mathew Lee Chicago Lung Chicago, IL Donna Frownfelter 111 inoi s survey Association Richard Hughes to include acute care, nursing home, and home care ,,,,,...:>

PAGE 9

( ( '. ., OTA Task 1 10/15/85 Contract 533-4935.0 -5 -0O0!20G Organization Location Contact Settings Bethesda Lutheran St. Paul, MN Frank lndihar Long Term Care Hospital Dona 1 d Mfll s Home Care Institute for Research Houston, TX Mark Splai ngard Rehabilitation & Rehabilitation Guy Harri son Home Care Ranchos Los Amigos Downey, CA William Prentice Rehabi 1 itation Long Term Care Home Care Emory Clinic Atlanta, GA Alan Plummer Acute Care Home Care Creighton University Omaha, NE William O'Donohue Acute Care Home Care University of Wisconsin Madison, WI Rita Giovannoni Acute Care Rehabilitation Home Care St. Michael's Hospital Toronto, Canada Robert Byrick Acute Care Task 4. Outcomes of Care A. Medical outcomes (Alba, Byrick, Goldberg, Indihar) 1) Physiologic effects, prognosis, need for further care 2) Rates of survival, death, dependency on mechanical ventilation; degree of dependency 3) Impact on functional ability (including mental competence) 4) Technology: safety and risk

PAGE 10

( ( OTA Task 1 Contract 533-4~35.0 10/15/~ 0 0:: 0 7 -6 -B. Social, Psychological, Economic Outcomes (Pfronmer, Laurie, Goldberg, Byrick) 1) Input on quality of life (re: setting) 2) Impact on family (include: finances) 3) Impact on caregivers 4) Impact on dying process Authors for Task 4 were responsible for their own opinions based upon their exper iences as professionals, consumers, researchers and/or organizatio1,a i leaders. They recruited and incorporated input of other experts including consumers to be certain that multiple perspectives were represented. Other invited conmentary was sought to assure a balanced opinion. Task 5. 1) 2) 3) 4, 5) 6) 7) 8) 9) Factors Influencing Treatment Decisions Who is the decision-maker? What patient characteristics affect the decision? What factors influPnce the rh~n~P of care settings? What is the role of age in decisio11-i,1ak in~? What patient characteristics affect inappropriate attention? How are patients evaluated? How do evaluations affect decisions? Are decision-makers knowledgeable and open-minded about the issues? How do institutional norms and guidelines affect decisions? How do religious beliefs and cultural values influence treatment decisions? 10) What is the role of the persons themselves in decision-making? 11) How and to what extent does practice vary in different parts of the U.S.? 7

PAGE 11

( ( OTA Task 1 o o o 0 ~ 10/15/85 V l.J Contract 533-4935.0 -7 -12) How existing legislation and legal precedents affect decisions? 13) What is the international experience? All the above questions were assigned to the following expert authors who incorporated the input of nursing, respiratory care, hospital administration, and the consumer. Case scenarios were offered by some contributors to illustrate reality. Augusta A 1 ba Robert Byrick Donna Fronfelter A 11 en Go 1 dberg Rita Giovannoni Frank lndihar Barry Make Walter O'Donohue Margaret Pfronner Alan Plumer William Prentice Geoffrey.Spencer Task 6. Conclusions & Implications 1) What is the importance and urgency of problems of the elderly re: mechanical ventilation? 2) To what extent are these issues specially significant to the elderly? 3) What issues can be settled by professional, conwnunity, or private sectors? 4) What issues require congressional actions? 5) Are treatment guidelines necessary?

PAGE 12

i -l OTA Task 1 Contract 533-4935.0 6) What issues are raised for research? 7) What are preventative means that could be implemented? 8) What issues should be priority for public attention? 9) What issues are amenabl~ for public policy change? 10) What are the public policy options? 10/15/85 -8 000209 The above questions were assigned to the following expert authors who conmented from their perspectives as well as from others they recruited to supplement th~ir expertise. Lu Ann Aday Marlene Aitken Susen Dunmire Donna Frownfeldter Sam Giordano Bernard Goldstein Frank Indihar Ed Roberts Due to the significance of the issues, and the need for expe~tise in pJ~~1c pol. __ this task was coordinated by Ed Roberts, internationally-respected leader of the independent living movement for the disabled and a person benefiting from prolonged _mechanical ventilation for 3 decades. Ed Roberts, Founder, World Institute for Disability, has devoted his career to public policy issues as they impact the disabled; he understands well the connon issues facing both disabled and elderly persons. \

PAGE 13

( I l Care for Life Contract 533-4935.0 LIFE-SUSTAINING TECHNOLOGIES AND THE ELDERLY PROLONGED MECHANICAL VENTILATION TASK 2. DESCRIPTION OF MECHANICAL VENTILATION AND ITS APPLICATION October 15, 1985 Prepared By: Augusta Alba Allen I. Goldberg Frank J Ind i ha r Gfni Laurie 1~

PAGE 14

( ( Contract 533-4935.0 TABLE OF CONTENTS OFFICE OF TECHNOLOGY ASSESSMENT LIFE SUSTAINING TECHNOLOGIES AND THE ELDERLY PROLONGED MECHANICAL VENTILATION Task 2. Description of Mechanical Ventilation and Its Application A. Review Development of the Technology and Its Use 000211 1) Historical perspective in the U.S.A ... 1 2) Definition of key concepts 7 3) Goals of ventilator care 10 4) Range of patients adult experience .. 13 B. Modern Equipment and Settings in Which They are Used 1) How ventilators work .. 21 2) Alternative methods; comparison of available mechanical devices; indications and contraindications ........ 23 3) Patient-machine interface 28 4) Monitoring technology 30 5) Preferred technology for elderly 32 6) Complexity of equipment; feasibility of self-care, care by non-professionals ~~~ References 39

PAGE 15

! ..... .. :J"' ~"~-.' Contract 533-4935.0 000212 The historical background and 1rscr~p~ior. of mechanical ven+ilation and ;ts appli cation have been addressed by the following experts: Dr. Augusta Alba Physiatrist/Neurologist. Authority on long tenn respiratory care in the pioneering Howard A. Rusk Respiratory Rehabilitation Service, Goldwater Memorial Hospit~l, New York, NY. Dr. Frank lndihar Practicing Internist/Pulmonologist. Innovator of long-term respiratory care unit at a large m~tropolitan medical center, Bethesda Lutheran Hospital, St. Paul, MN. Gfni Laurie Internationally-recognized authority on the history of long-term respiratory care. Editor, Rehabilitation Gazette; Founder, Gazette International Networking Institute, St. Louis, MO. The final draft has been supplemented by conmentary from invited experts: Dr. John E. Affeldt Nationally-recognized leader in the organization and evaluation of health care delivery. Fonner Medical Director, Rancho Los Amigos Hospital; innovator of first polio center and home care.program for ventilator-dependent individuals. Fomer Medical Director, Department of Public Health, County of Los Angeles. Currently, President, Joint COR111ission on Accreditation of "ospitals (JCAH). Dr. Barry Make -Pulmonologist. Director of Respiratory Care Center, University Hospital, Boston, MA. Fonner Medical Director, Medical ICU, Boston City Hospital, Boston, MA. National authority on the care for ventilator-assisted adults. Innovator of special center for rehabilitation of patients with chronic respiratory disorders. \ : \ /.J...

PAGE 16

( ( OTA Task t: la/ I ;;/85 Contract 533-4935.0 -1 000213 LIFE-SUSTAINING TECHNOLOGIES AND THE ELDERLY PROLONGED MECHANICAL VENTILATION TASK 2. DESCRIPTION OF MECHANICAL VENTILATION AND ITS APPLICATION A. REVIEW DEVELOPMENT OF THE TECHNOLOGY AND ITS USE 1) Historical perspective in the U.S.A. (Alba, Affeldt, Goldberg, Laurie) Prolonged mechanical ventilation began with the development of the modern iron lung in the 1920's; however, 'technology progressed most rapidly during the polio experiences of the 1950's.* The first lung was devised by Philip Drinker,** a professor of engineering at the Harvard School of Public Health. His first test "patient" was a paralyzed cat in 1927; the first human ** used his lung in 1929.(7 ) By 1936, there were 222 iron lungs throughout the world, inc.luding one at the Peiping Union Medical College. That lung saved and sustained the life of Frederick B. ~.ii ;e, ~, a very wealthy young mc.1, wno was or, a ,. rl~ c.. with his parents when polio struck him in Peiping. From then until his death 18 years later, the media reported every move of the "man in the iron lung" his travels, hobbies, homes, marriage, and chfldren.< 7 ) In response to the devastating epidemics and deaths from bulbar polio, the prolonged management of respiratory failure by tracheostomy and long-term positive-pressure ventilation was perfected. The Engstrom ventilator pro totype of all positive-pressure ventilators used today -was designed in response to the polio cr1sis.(4) Another popular negative-pressure tank respirator was designed by Jack Emerson tn 1931. According to Mr. Emerson, the first iron lung was built by Alfred F. Jones in 1864.(5) /3

PAGE 17

I ( OTA Task 2 Contract 533-4935.0 10/15/Si) 0 0:214 -2 -Money and appropriate c011111unity-based supportive care were no problem for Snite, but they have been a major concern for ventilator-assisted individuals and their connunities ever since. Economic considerations, not quality of life, have been-the chief catalysts for action on their long-term care Saving money on the long-tem care of polio patients scattered in hospitals around the country was the primary reason for developing regional respira tory polio centers during the epidemic years of the early 19501s.<9 ) The centers, located in 16 teaching hospitals and medical schools around the country, met the needs of the increasing numbers of older and more severely paralyzed polio survivors. Contrary to the popular notion of polio as a child's disease, two-thirds of the patients with r.espiratory paralysis were young adults.< 9 ) Donations poured into the National Foundation for Infantile Paralysis which paid for everything at the centers: professional staff, inpatient and outpatient care, equipment and its maintenance, research, home care and modifications, and the salaries of attendants. Again, saving money was the principal reason for developing a home care system for ventilator users in 1953. That first system was developed at Rancho Los Amigos, the Los Angeles County hospital, to save money on the care of 158 hospitalized ventilator-assisted patients.(lJ) The savings were significant. The experiences should be studied carefully for they are equally applicable today. C011111unity-based home care services cut the average hospital time from one year to seven months.<9 ) Home care that included attendants, equipment maintenance, and other supportive services were one-tenth to one-fourth of hospital costs.< 9,tt) 11

PAGE 18

I \. 10/15/85 OTA Task 2 Contract 533-4935.0 -3nnon ,:; 1 5 The regional centers engendered a very positive attitude and used a mult1d1scip11nary team that included the staff, the patients, and their fam11ies.<3 ) Before the patients went home, they were encouraged to make informed choices, to direct their own lives, to instruct others in the use of their ventilators, and to hire and train attendants~ The centers functioned as an infonnation resource for disabled individuals and their private physicians. It was estimated that, without the centers, 40 percent of those who went home would have had to remain institutionalized for the rest of their lives. ( 9 ) Unfortunately, the centers were short-lived, because they were dependent upon financial support from a voluntary organization. The success of the polio vaccines curtailed donations to the National Foundation. By 1959, it had to close the centers and stop funding home care. However, Goldwater's Respira tory Rehablitation Center (New York City) was able to survive because it was funded by the Cit_,, of New York when the National Foundation withdrew its support. Rancho Los Amigos (Downey, CA) was able to c .ntinue :tJ ~;. ventilator-assisted individuals because it was supported by the County of Los Angeles. The other National Foundation Respirtory Centers, which were in voluntary hospitals, were unable to continue because of the lack of funds to care for the long-tenn ventilator user. D

PAGE 19

( OTA Task 2 Contract 533-4935.0 10/15/St O O 21 G -4 -The decade of the regional respiratory polio centers had a profound effect on the future development of critical care, pulmonary, and rehabilitation medicine.* Today these are the medical areas of expertise concerned about prolonged mechanical ventiiation. With the closing of the regional centers, the medical leaders became the pioneers and teachers in new or evolving disciplines of physical medicine (physiatry), pulmonology, neonatology, anesthesia/intensive care (reanimation), and surgical specialties.< 2 ) Allied health professional team members, using their polio experiences and knowledge-base, enlarged their capacities to serve patients with other acute illness or chronic conditions that needed physical, occupational, and/or respiratory therapy. The pioneering advances in upper airway management and mechanical ventilation were the seeds for the growth of respiratory care -techniques and technologies which stimulated and enabled modern advances in anesthesia, surgery, and prolonged life-support as we know it today. As a result, people with life-threatening, medical or surgical conditions who are primarily healthy or even those with chron;r. underlying med.ical problems -can now benefit from applied technology in the acute care setting. Because of this, quality survival is now possible from illness that in previous *Acknowledgement for the confirmation of this historical perspective and its significance is given to John E. Affeldt, M.D. Dr. Affeldt has had years of experience beginning with the era of paralytic polio to the application of respirators to patients with high spinal-cord injuries, obstructive lung disease, traumatic head injuries, and many other physiologic and pathologic causes of respiratory failure of a chronic nature. Dr. Affeldt was formerly Medical Director of Rancho Los Amigos, and the Department of Public Health (Los Angeles County. He is an innovator of the first polio respiratory center and an authority in public health. He is a recognized leader in the organizational and evaluation of health care delivery in the U.S.A. He cur rently serves as the President, and Joint C011111ittee for Accreditation of Hospitals (JCAH).

PAGE 20

( (. OTA Task 2 l(J/i5/85 Contract 533-4935.0 5 0009 .. 17 generations was not the case. Even for those few survivors who are not cured, but remained technology-dependent, home support is possible today due to technology (curaiss, poncho, Tunicliffe jacket, positive pressure units, lightweight portable devices) suitable for home and travel use that was first developed for polio patients. The organizational concepts that developed from the polio experience were as important as the technologic advances. Regional systems of health service delivery were created by those leaders of the polio era who could best understand their necessity. Examples include the regional intensive care unit, rehabilitation institute, spinal cord center, and trauma center. According to Affeldt, the successful elements of the polio centers of expertise (the interdisciplinary team approach, the concentration of resources, the multi ple-purposes (clinical care, teaching, research)) served as models for evolving modern centers whos~ missions were devoted to complex, critical, acute or chronic illness. Whatever happened to the polio patients? ( 6 ) The 1,756 respiratory polio survivors(l 4 ) could have been drains on society in the cocoon of institutional care, but for more than 30 years most of them have lived at home with non-professional attendants. They have lived full and useful lives as wage-earners, consumers. s~ouses1 parents, and grandparents.(J,S,lO,l 2 ) For 26 years, the Rehabilitation Gazette has documented their productive Hves and contributions to their conwnunities. Today, they are enterin.g the ranks of the elderly and are facing new situations.(S) /J

PAGE 21

( OTA Task 2 Contract 533-4935.0 10/15/85 OJon.~~ -61 ~i0 Expe~iences of these aging polio survivors are important to those who require ventilators because of other diseases and injuries. As examples, the experiences of two ventilator-dependent octogenerians, who began to use ventilators in their late seventies and who then progressed from intensive care to home and active c011111unity involvement, illustrate the influence of the polio experience, treatment, and technology: Jacob Javits, former Republican senator from New York, has been on a ventilator since 1983 when he was 79, because of amyotrophic lateral sclerosis. An active board member of the ALS Foundation of New York City and a prolific speaker and writer, he says, NI have no feeling for a long life, but I have a great feeling about a useful life I decided to work hard and per haps show other disabled people that there fs life to be lived I still have my marbles. The great issues to which I devoted my life remain great issues. I have nothing better to do than to give my remaining strength to them." Fay Daniels, who is now 81, was disabled by facio-scapulo-humeral dystrophy when she was a teenager, and she has been dependent upon a ventilator since 1971. Before that time, she had been an executive and a very active person. During the initial hospital ization she did not want to live, 11In 1982 I decided to be myself again. I became active and I went home with attendant care Now, the only thing that is left of my body is my brain, but my I' continues." Such life experiences prove that relatively simple devices are effective. for long-tenn care, that it is unnecessary to move the hospital to the home, and that it is a mistake to try to withdraw persons from ventilator support who can continue to function in their daily lives only if they are not. Their lives demonstrate that with appropriate support services, training, and professional supervision, the family or non-professional attendants can manage the care of ventilator-assisted individuals in their own homes or alternative home-like settings without resorting to institutional solutions.

PAGE 22

( OTA Task~ Contract 533-4935.0 -7 0000~0 "-"' j .~ The productivity, creativity, and potential of polio survivors as healthy paralyzed people are proof of the human value as well as the economy of regional, conmunfty-based, individualized home care service systems for ventilator-assisted persons of all ages. The history of prolonged mechanical ventilation -its origin with the polio patient is one of how technology, which began for one purpose, can be used (or abused) for another: the critically-or tenninally-ill elderly. There have evolved only a few centers ~f expertise which can relate to the current practice. Dr. Barry Make directs one such unit which is unique because of ~xperfence with COPD. According to Make, it is precisely the polio and neurologically-impaired person that are today's major beneficiaries who -require prolonged mechanical ventilation. Make, with other contributors to this OTA report, will help detennine how prolonged mechanical ventilation is being applied today -with what success, difficulties, and cost. Nevertheless, this historical account, written by those responsible for making it happen, is how we have come to where wear~ today. 2) Definition of key concepts (Goldberg) The functions of respiration are oxygenation (to deliver oxygen) and ventilation (to remove carbon dioxide). Respiratory failure is a life-threatening condition with a disorder in oxygenation and/or venti lation. It is determined by blood measurements of oxygen and carbon

PAGE 23

( OTA Task 2 .Contract 535-4935.0 10/15/BS,) O r, n o,. ,....;lw'.1 -8 -dioxide, and it exists when these blood levels exceed expected nonnal ranges for age at given barometric pressure. It is arbritary to choose the dura tion of time when an acute condition is considered long-tenn or chronic. Most physicians polled agreed that the time should be either 2 days, 2 weeks, 1 month, 6 weeks, or 3 months! The basis for their preference is the point in time when the condition has lasted long enough that it is anticipated it will last longer than anyone can reliably predict. This must be done on an individual case basis or by diagnostic category, taking multiple factors (including age) into consideration. There have been other tenns frequently used interchangeably with respira tory failure: pulmonary/ventilatory failure, pulmonary/respiratory insufficiency. As there is no acceptid and preferrable tenninology, it is essential to define these tems each time they are used. In general, there is no difference among the terms ventilatory, respiratory, or pulmonary when used to'describe breathing. However, some physicians consider chronic respiratory insufficiency as a distinct entity from chronic respiratory fail !!!!= the fonner is life-affecting rather than life-threatening. By this it 1s meant that a person will not die, but may not be able to live independently outside of an institution because of medical instability. If they do, they cannot function to their capacity because of inadequate oxygen delivery to vital organs and a build-up of carbon dioxide. This limits strength, vitality, and clearness of thought.

PAGE 24

( ( OTA Task 2 Contract 535-4935.0 10/15/85 _9_0002~1 A ventilator is a mechanical aid for breathing: a device to augment or replace natural efforts of respiration. These devices were fonnerly called respirators, and in some institutions (e.g. Goldwater) and countries (e.g. England) they still are. As these devices evolved into more sophisticated life-support systems, and the need for better cla_ssification became evident, the term ventilator was introdticed.(151617) Ventilators work either by (1) positive pressure applied to the natural airway (mouth positive pressure) or artificial airway (tracheostomy positive pressure) or by (2) negative pressure applied to the chest wall and/or abdomen (iron lung, curaiss, rocking bed). The objective of mechanical ventilation is to reverse low oxygen (hypoxia) or. -high carbon dioxide (hypercarbia) due to inadequate spontaneous ventilation (hypoventilation). Nonnally, this correction is anticipated and accomplished over a few hours or days. If not, at some defined point (weeks), the need for a ventilator-assistance becomes prolonged". As with the distinction of "chronic", 11prJ:c.,ged" refers an arbitrary duratio,1 c: th.~. At this. '" one can no longer reliably predict how long technology assistance will be used. The decision is made on an individual ca_se basis and differs with each diagnostic category and clinical situation. In most cases, the situation initially requiring a ventilator was acute and prolonged use was not anticipated. In other cases (e.g. chronic illness), is anticipated and preferred to living without a ventilator. For this OTA Survey (Task #3), "prolonged" was arbritrarily chosen as two weeks. Although another duration of time could have been used, it was of interest to learn the outcome of patients who

PAGE 25

OTA Task 2 10/15/85 Contract 533-4935.0 0009-l') 10 -,_ ,.,_ require ventilator for this period of time. It was anticipated that this would be essentially the same group of patients that ~ould also require ventilation at one 1110nth. Once the requirement for mechanical ventilation is prolonged, and the condi tion becomes chronic, the ventilator-assisted person is considered to be ventilator-dependent. At this point, the condition may still be life-threatening (chr'onic respiratory failure). More often, the ventilator is used to achieve medical stability in order to reduce the number of major diagnostic decisions and/or therapeutic interventions required by the patient (chronic respiratory insufficiency). This pennits for the patient more mental clarity, vigor, and ability to interact with the environment. In ( addition, it raises the option of an alternative to an expensive care unit. 3) Goals of ventilator care (Goldberg, Indihar) The goals of ventilatory care are to: 1. ~everse hy,oxic (low blood oxygen tension) 2. Reverse hypercarbia (high blood carbon dioxide tension) 3. Decrease the work of breathing 4. Prevent patient fatigue 5. Assist respiration in patients with decrease muscle strength (as in neurological disease} 6. Overcome small airway obstruction and/or low compliance (stiff lungs or chest wall) 7. Reverse atelectasis (small air sac collapse) unresponsive to ( conservative therapy

PAGE 26

( ( OTA Tast~ 2 h.1/ 15/85 Contract 535-4935.0 11 _000223 8. Enhance physical and mental functional ability. Mech&nical ventilation may be applied to previously healthy elderly patients with acute respiratory failure due to pneumonia, atelectasis, severe bronchitis, heart attack with congestion or irregular rhythm, pulmonary edema, adult respiratory distress syndrome, usually with the anticipation of short-tenn use. Patients with underlying chronic disease of pulmonary, cardiovascular, neurological or other organ system (e.g. diabetes, hardening of the arteries, high blood pressure) may also require mechanical ventilation to reverse similar acute conditions. In an unexpected few, fts application becomes unintentionally "prolonged". For example, the patient with COPD who develops acute respiratory failure as the result of a pneumonia may be -placed on a ventilator contemplating its ultimate removal once the pneumonia resolves. However, such patients may not be weaned over a short period of time due to their underlying pulmonary or other disease process which mitigates against weaning (e.g. a primary neurologic disease (ALS) which results in progrcssiv~ ~kness). At the initial time of li -thr~ate, acute respiratory failure, this was not anticipated. Prolonged use becomes the reality due to circumstances related to 1) the original cause (e.g. an especially virulent or antibiotic-resistant bacteria or virus; 2) the patient's response to therapy (e.g. an altered response due to impaired i .... nological ability or a less than desireable therapeutic response to drug 111nagement; or 3) the uniqueness of the situation (e.g. secondary complications resulting from unwanted or unexpected side-effects of the therapeutic regimen). In some instances, chronically-ill patients cannot be withdrawn fran the mechanical device after the acute management due to progression of

PAGE 27

( ( OTA Task 2 Contract 533-4935.0 10/15/85 000~24 -12 -their underlying disease process(es) or the extra effects the acute illness has had on the original condition (e.g. progressive neuron.1scular weakness, progressive anphysema). Diagnoses i.n this category which specifically apply to the elderly population include amyotropic lateral sclerosis, other degenerative neurologic disorders, cerebrovascular accidents, the after math of other organ system failure (renal, cardiac), plus a host of condi tions in the cancer/lymphoma family. The determination to initiate and continue to provide mechanical ventilation has, thus far, been an option open to the elderly patient. Indeed, it has been the goal of dical care to keep the ventilator-assisted individual sus tained on these devices, presumably to enjoy life, grandchildren, family members, and to continue to be contributing members of society. This is particularly the case with the younger individual with great mental potential who may have been neurologically injured. It is also true of the elderly patient with a progressive chronic underlying condition who, with this support can continue to function in the connunity. For critically-ill elderly patients, the goal is to provide support during an anticipated finite period of organ system(s) failure. For tenninally-ill elderly, the goal is to buy time for the patient and/or family who need it to prepare for the inevitable death. Thus far, the ethical application of h1111anitarian and medical principles has dictated that life-sustaining procedures, despite cost, are applied if the patient and his family detemines that, indeed, this is their desire.

PAGE 28

OTA ,as~ 2 Contract 533-4935.0 i 0/ }5/8b ooo')~)~ -13 -. "-,,, tJ Unfortunately, the application of life-saving technologies to the criticallyand terminally-ill patient has been seen with some degree of frequency in the past. In many instances, the goals of this treatment were not readily apparent. The future education of medical and social service personnel should encourage that life-saving technology always be applied to a critically-ill patient by definition. The major ethical dilemma occurs in the patient with an incurable disease process who, for one reason or another, opts to having the life-saving technology applied to them. 4) Range of patients-adult experience (Alba, Indihar) In the late 70's, the Bethesda Lutheran Medical Center, St. Paul, did a complete analysis of Minnesota and bordering states of the Upper Midwest region:< 1a,l9 ) lndihar's studies found that many patients who required prolonged mechanical ventilation could not receive adequate care in loving, safe, and h0111e-like environnts; their sole alternative was "living" in an intensive care unit. The Foundation for Health Care Evaluation, the Minnedpolis-St. r ~1 Regional 0rofcssional Standards Review Organizativn (PSRO), Medicare, and Medicaid (Minnesota Welfare) supported the Prolonged Respiratory Care Unit (PRCU), which permitted prospective reimbursement based on defined categories of care which were more favorable than regular hospital intensive care unit (ICU) rates. The following updated statistics from the PRCU reflect admissions since the origin of the PRCU in 1979, the majority of which came from regional state-wide medical centers other than Bethesda Lutheran Medical Center and from neighboring states of North and South Dakota, Iowa, Wisconsin, Illinois, and Michigan, the referral area of the Upper Midwest (See Tables).

PAGE 29

OTA Task 2 Contract 533-4935.0 ( PROLONGED RESPIRATORY CARE UNIT AVERAGE DAILY CENSUS 1980 (Jan-Dec) 16.7 1981 II 23.8 1.982 II 27.0 1983 27.0 1984 II 21.0 1985 (Jan-May) 23.0. AGE RANGE 15-20 5 21-30 18 31-40 12 41-50 21 51-60 48 61-70 130 71-80 81-90 24 TOTAL 355 FEMALE 187 MALE 168 DISCHARGE ACTIVITY August. 1979 May. 1985 52.61 47.31 Death 35.51 Home 29.01 Nursing Home 7.01 Intensive Care 19.31 Other In-Pt. Units 3.81 Other Hospitals 3.51 Rehabilitation Units 1.21 LENGTH OF STAY Range: 2 to 2,054 days 10/15/85 -14 -0 0 0 ') ,.,, ,..., ... u

PAGE 30

OTA Task 2 Contract 533-4935.0 ( ADMISSION ACTIVITY Number 355 Specialist Type: Internal Medicine 259 Family Practi~.g. 57 Pulmonary Spe~alist 37 Other 2 TOTAL 355 DIAGNOSTIC DATA COPD 271 Muscular Dystrophy 6 Closed Head Tra1.111a 6 Quadrapleg1a Trauma 22 Quadraplegia, Polio 7 Charcot Marie Tooth Synd. l Multiple Sclerosis 1 Amytroph1c Lateral Sclerosis 7 Gu1111an Barre l Restrictive Lung Disease 8 Central Hypoventilation 1 Neurological, Other l TOTAL 355 10/15/85 -15 000227

PAGE 31

( l. OTA Task 2 Contract 533-4935.0 10/15/80 0 0 ') ~:-, (. -16 ,._ '" 0 These data, which depict a cross-section of patient ages and diseases, indi cate the wide variety of patients who require prolonged mechanical ventila tion. A number of these patients are absolutely unweanable; however, they have acc0111110dated to their disease process. Of particular interest are 'the 291 of patients who were discharged home. These individuals enjoy the comforts of family life, despite the hindrances of mechanical ventilation. Of course, a qualified primary caregiver must be supplied to these individuals; often this is a dedicated and interested family member. However, support from many home care agencies 1s available to gi've the primary caregiver relief, additional aid, nursing help, etc. A number of Indihar's patients were totally weaned from ventilator support -during their stay on the prolonged unit. Weaning, the process of gradual and purposeful withdrawal from a mechanical ventilator, requires patient, dedicated and skillful care. If weaning is a realistic goal, it must be accomplished in the hospital setting, where the patient feels secure. Weaning has never, in Indihar's experience, been accomplished in the h~me setting, due to the insecurity the patient experiences without the surrounding safety of the hospital/PRCU staff and emergency care available.* *My recent experience has demonstrated that with appropriate planning, available personnel, and suitable technologies, major medical adjust ments and prescriptions can be accomplished in the home setting which is far more natural and appropriate to the level of activity of the patient. It also saves money. (Goldberg)

PAGE 32

OTA Task 2 Contract 533-4935.0 10/15/85 -11-000229 Some unweanable patients must reside at the PRCU due to the difficulty experienced in obtaining adequate, safe_placement in a nursing facility or the lack of a willing primary caregiver to provide care in the patient's home setting. It 1s 1nterest1ng to note how many of these patients, when presented in an honest manner with the options, decide to be resuscitated despite their depe.ndence on mechanical ventilation! As reflected in later data (See PRCU Rehabilitation Data -Appendix), the vast majority of the 1>at1ents (greater than 801) were alert and mentally competent. The level of functioning, of course, varied with the diagnosis. For instance, a quadraplegic patient required ALL activities of daily living to be provided by nurs1ng/phy!sica1 therapy/respiratory therapy personnel. The patients with multiple sclerosis, with adaptive wheelchairs and other devices to control their environment, could get about the unit and control lights, TV, radio, and call systems from their beds; self care, feeding, etc., required assistance. Those patients with closed head trauma were totally dependent on ancillary .-ersonnei f:, aH care .. i-.. i,ever, the greatest number of patients, those with the diagnoses of chronic obstructive or restrictive lung disease, were dependent on ancillary health personnel to varying degrees. Virtually 1001 of these individuals required a ventilator: 801 for 24 hours/day, and 201 for 8-12 hours per day {this latter statistic is skewed by our weaning attempts). The prognosis, too, is quite variable. These statistics are revealed in the PRCU Rehabilitation Statistics. (Appendix).

PAGE 33

\.. OTA Task 2 10/15/85 Contract 533-4935.0 ;I O ., 8' A -18 _!.) t1 ,) Is the Bethesda experience typical or unusual? The PRCU is.a unique unit because it was specially designated for a target population which required long-term respiratory care and could not go home or to other ;nstitutional settings because of special needs. In that regard, the PRCU made available a new option when only less satisfactory ones before existed. However, the Bethesda experience demonstrates what a regional referral center can accomplis,h in cost-savings and other benefits to a target population which already exists. Their experience can provide a better understanding of the population-at-large of ventilator-assisted persons. -Can the Bethesda experience be extrapolated to the national level? The Upper Midwest does not have a statistical preponderence of any particular disease entity. Specially-designated programs do exist elsewhere and their experience can put those of the PRCU into perspective. At Boston University, Make et al have reported on their concept and initial experience in the rehab111tatio~ ~f ventilator-dependent patients.<20) The Respiratory Care Center (RCC) opened in ; it featured the multidiscipH-nary approach to evaluation, management, and discharge planning. The rehabilitation focus of the RCC resulted in the self-sufficiency of the patients at home. Of interest, the initial report of 16 patients (10 COPD, 6 restrictive disorders) included only two over the age of 65. At the Institute of Research and Rehabilitation, Houston, TX, Splaingard et al have reported over twenty years of experience with home positive pressure ventilation (1962-1983).<21) Their experience with prolonged mechanical ventilation began during the polio era and expanded for a variety of other conditions: 26 patients had spinal cord injury and the remaining 21 had a variety of

PAGE 34

( (_ 000231 OTA Task 2 10/15/85 Contract 533-4935.0 -19 -cardiac. neuromuscular, central nervous system control of breathing and miscellaneous disorders. Again, the reality of this often quoted experience 1s one of a limited nber of elderly: 1/47 patients. The Goldwater experienc~<22> with elderly patients who require prolonged me chanical ventilation does incorporate the consideration of physical and mental functioning at the time treatment is considered. All patients must have some ability to c011111unicate either verbally, with gestures, or with augmentative connunication devices. Among the neurologic cases, some are quadriplegic; some have use of the upper extremities. Within a matter of weeks, months, or years, the patient's cerebral status may worsten either from intrinsic disease which required the ventilator in the first place or -. from episodes of cerebral hypoxia (from intermittent respiratory infection, cardiopulmonary arrest) or cerebral atherosclerosis. The prognosis in all cases without the ventilator is death. However, cases such as spinal cord injury and Gullian Barre do in many instances show improvement to the point t~~t they a. } either "-ad off t. respirator or partial ly--wee1ned ( 1~~-> them 24 hrs/day). Alba reports that her pulmonologist colleague (Lilia Gay, M.D.) has 9 elderly COPD patients who require prolonged mechanical ventilation: 8 for 24 hrs/day, 1 for 12 hrs/day. These 9 patients are alert, bright, and many of th were in the past professional people. They either have no family or their families fear taking them home and caring for them. There are no health related facilities or nursing homes which are equipped or staffed to care for patients on respirators. With rare exceptions, the facility in

PAGE 35

( OTA Task 2 (Lf\ 0 '13? 1 Q/15/IJ5U ,:_ Contract 533-4935.0 -20 -which such patients are cared for must have around the clock on-board medical and respiratory therapy coverage. Such coverage, and the ongoing training of nursing staff personnel, is too expensive for isolated patients to be cared for in nursi.ng hOllles. In order for the OTA to have a clear, overall pic ture of the history, Mission, purpose, and type of patients being described at Goldwater, several brochures are included in the OTA report (Appendix). Because of the sparcity of reported cases, one must reconsider if, in fact, there is a large nuaber of elderly persons requiring prolonged anechanical ventilation. OTA Task #3 (Data on Utilization and Cost) wasundertaken to get s0111e better idea of the incidence of prolonged mechanical ventilation of the elderly and if possible, of the quality of functioning, mental status, prognosis, and degree of technology-dependency of this population. To the knowledge of the contributors of this project, this will have been the first concerted effort of its kind in the U.S.A. directed to any age group who are dependent upon mechanical ventilation.

PAGE 36

. -( OTA Task 2 Contract 533-4935.0 iO/i:-(Pb 0233 -21 -B. MODERN EQUIPMENT AND SETTINGS IN WHICH THEY ARE USED 1) How ventilators work (Goldberg/lndihar) Ventilators have 5 major components: 1) Power source: Source of energy to run the machine (electric motor, high-pressure gas)-; 2) Force generator: Mechanism that moves the gas (piston/cylinder, turbine-compressor, high pressure gas); 3) Control system: Adjustable variables that detennine the characteristic of the breath delivered (volume, rate, flow, etc.); 4) Delivery system: Tubing, valves, and connections that link the machine and patient (includes humidification); and 5) Ala.nn system: Devices that warn patient or caregiver of machine/patient malfunction. Ventilators are classified by the primary variable that is pre-determined. This function {volume, pressure, time) is "pre-set", and it detennines the delivered breath (tidal volume). For example, with a volume pre-set ventilator*, the inspire tid:al volume delivered te, 1.,il patient is deterr.d.i\:O by dialing a volume. A pressure pre-set ventilator detennines delivered tidal volume by dialing a pressure. Ventilator modes determine the degree of control the machine will have in the breathing cycle. Control Ventilation provides total respiratory sup port; the ventilator cycling is independent of the patient's desire and *Prior to standard tenninology,(l&) such ventilators were classified as volume-cycled, volt.une-regulated, and volume-limited ventilators. Similarly, pressure ventilators, pressure-cycled, pressure-regulated, etc. Terminology is still fnterchangeabl~.(23)

PAGE 37

( OTA Task 2 Contract 533-4935.0 10/15/sQ O 0234 -22 is based on the clinician's assessment of patient need. This mode is used for the unconscious patient or when spontaneous ventilation is sig nificantly depressed. Assisted Ventilation is used when the patient's efforts are sufficient to initiate a breath; this is sensed by the machine, which assists" the patient by providing airflow as detennined by the the pre-set variable (e.g. volume, pressure, time). Assist-Control senses if a patient has not taken a breath for a certain period of time, and then one is provided. However, if the patient does make the effort, the machine will sense and assist" it. Intennittent Mandatory Ventilation (IMV) allows the patient to spontaneously breathe while connected to the ventilatory circuit; at some pre-detennined time, the machine will intenn1ttently deliver a breathe. IMV cycles are independent of the patient's own breathing effort; at times, this may be counter to the patient's needs and efforts. Synchronized lntennittent Mandatory Ventilation (SIMV) permits the patient to breathe at his own rate, but the fntennittent mandatory breaths are synchron~zed to occur with the patient's own efforts. This is considered by some to be the most natural way to maintain patient's independence, adequacy of ventilation, and maintenance of respiratory muscle strength. Others have observed that the prolonged use of this mode on modern sophisticated ventilators impedes the weaning" process. Once the type of ventilator and ventilator mode has been selected, the volume of the breath (or the pressure to generate the breath) and rate -of breathing (breaths per minute) are chosen in order to provide for the patient's metabolic and oxygen needs. Also, the ratio of inspfratory to expiratory time may be determined (l:E Ratio). Humidification must be

PAGE 38

i OTA Task 2 000235 l0/1~/85 Contract 533-4935.0 -23 -supplemented to high flow air/oxygen mixtures to prevent drying of the tracheal mucous aabranes. Positive End-Expiratory Pressure (PEEP) can also be added to provide the patient_with a small amount of pressure at the end of expiration to prevent the inevitable collapse of small airways and air sacs (atelectasis) that tends to occur in the bed-ridden and i111110bile patient. PEEP is used more in the acute situation prior to achieving medical stability. For prolonged mechanical ventilation, a pr~gram of chest physical therapy ts more effective in accomplishing this goa1.<24,25) Thus, simpler devices (without PEEP) may be used, and the patient (young and old alike) can take a more active part in self-care. 2) Alternative methods; comparison of available mechanical devices; Indications and contraindications (Alba)(26) Mechanical aids for breathing may also be described according to whether the apparatus 1) operates by positive or negative pressure; 2) produces an active inspiration and/or active expiration; 3) fs applied to the natural airway, artificial ai.~JY, or body (chest/abuomen); anc 4) is eye~. non-cycling. If the patient requires a permanent artificial airway (tracheostomy) and the tracheost0111y opening is not too small (i.e. only needed to clear mucous), the patient can chose to use tracheal intenn1ttent positive

PAGE 39

J, ( ( OTA TASK 2 Contract 533-4935.0 1011s1si O O 2 3 G -24 -pressure ventilation (TIPPY*) for sleep, and mouth intermittent positive pressure (MIPPV**) or a pneumobelt*** during waking hours. A patient might elect to use MIPPV during the day, because it provides the opportunity to plug the tracheostomy tube, thereby producing less drying and irritation to tracheal mucous lllelllbranes, and allowing glossopharyngeal breathing**** if capable. The use of the pneumobelt during the day would be reserved for the patient who can tolerate a plugged tracheostom, tube, and for whom the relatively small breath provided by the pnemobelt in the semi-sitting *TIPPY is positive pressure breathing which results frOM connecting a cycling mechanical aid for breathing to the patient by a tracheostomy. The ventilator is a s1mpl! volume pre-set one with only control of volume and rate. (e.g. Jh0111Pson Bant~) **MIPPV is positive pressure breathing which results from connecting a cycling or non-cycling device to the patient by a mouthpiece (straw) or face mask (during sleep). The patient can maintain the natural airway and takes a more active part in their own breathing. As with TIPPY, the devices are simple, delivering either a cycled breath (Thompson Bantam) or continuous flow (Thompson Zephyr). ***A i"eumbe 1 t 1 s an f nfl a tab 1 e b 1 adder worn a roJnd the abdomen. 1 t is a posft ve-pressure device which augments exhalation for the patient in the sitting position. It is used with a cycling portable ventilator (Thompson Bantam). ****Glossopharxneea1 <'roe> breathing is a technique discovered by polio patients who use t e1r mout and throat to gulp small quantities of air at a rapid rate. This allows th periods of spontaneous ventilation and the safety factor of "free-time off mechanical ventilation.

PAGE 40

( ( oTA Task 2 Contract 533-4935.0 10/lg/gSO 2 3 7 -25 -position is adequate. At the present time, a body respirator* (tank, iron lung) is not used by the patient with a tracheostomy tube, because it is easier to attach a mechanical ventilator to the tracheost0111y tube, and the patient can be more comfortable in bed and while mobile (walking, electric wheelchair). Alternatively, the patient may elect to use TIPPY around the clock. If the patient has weak mouth/throat (oropharyngeal) muscles, a central control of breathing disorder, upper airway obstruction, any disturbances of consciousness (due to critical illness or acute anxiety), and/or fs unable to cooperate with MlPPV, the decision wUl be made to have the patient use TIPPY even during waking hours. If the patient does not have a tracheostomy, then either MIPPV or body ventilators may be used alone or in c0111bination, depending on whether the patient requires a breath (tidal volume) greater than average (because of intrinsic lung disease and/or increased metabolic energy needs). If a larger tidal volume is needed, then this can be provided by intennittent positive pressure ventilation or L,ay raspirators (irc:1 iang or;.:}.: The iron lung is bulky, and the patient is relatively inaccessible for intensive nursing care and monitoring. The poncho llows the patient to remain on a regular hospital bed, but it gives somewhat less of a breath, because of the sucking in of the wrap under the grid over the upper anterior *A body respirator is a device that intennittently cycles negative pres sure around the thorax and abdomen, this results in a breath taken through the natural airway. -The poncho {body ~cket1 envelope) is a cloth or plastic wrap which is placed around the 6 y permfttfng a space in which is fntennittently-cycled negative pressure.

PAGE 41

( OTA Task 2 000~38 10/15/85' Contract 533-4935~0 -26 -* ** chest wall, which prevents the upper lobes of the lungs from being fully inflated. If the patient using any of these body respirators has only a short period of ti to spontaneously breathe, and the device 111st be shut off for a variety of reasons, the patient should be able to use MIPPV dur~ng that interval fro111 any available cycling positive pressure ventilator. If the patient requires an average tidal volume, this can be provided by a rocking bed,* cuirass,** or pneU110belt. The rocking bed provides a feeling of freedan and 110veaent. Persons who have the ability to transfer thselves independently frOIII a regular hospital bed to a wheelchair may not be able to do thfs from the rocking bed. The rocking bed ventilates mainly the lowr lung lobes with passive excursion of the diaphragm. The cuirass siailarly causes passive excursion of the diaphragm and SOiie passive expansion of the lower rib cage. If the patient is in a seai-sftting or sitting position, the pneU1110belt ventilates mainly the lower lobes, and provides no 110re tidal volume than functioning abd011inal auscles. The rocking bed is a hospital-size bed which alternates its position up and down. fhedegree (angle) of the position deteraines the size of the breath, which ts created by the effects of gravity on the bowels and diaphragm. The breathing rate is determined by the nUlllber of alterations per minute. The cuirass (turtle shell) is a plastic cover over the chest and/or ab doaen that provides a space in which is intenaittently cycled negative pressure.

PAGE 42

( OTA Task 2 Contract 533-4935.0 10/1S/i00239 -27 -Nost patients with neuronascular disease today prefer the use of MIPPV, both during sleep and waking hours. Many ingenious ways of attaching the breath ing tubing to the aouth, nose, or both are being developed by these patients themselves. These are usually designed by patients working with friends who are engineers, dentists, etc. and made with simple materials (e.g. plastic) which et the physical and functional needs of the patient. Patients who use mouth or nose IPPV during sleep, or those who sleep with TIPPY with a deflated E!!f* on their tracheostomy, must be watched carefully for upper airway leak. The ventilator is usually set at a higher pressure or tidal vol1.1111e to c011pensate for the leak. The patient can usually control the degree of leak quite well in sleep, but this is a conditioned reflex, and close monitoring is needed during the training period. In some patients, the variable upper airway leak (position, awake/asleep) becomes the major managaaent challenge. There has been a proliferation of COllf)act, 1 .. ,t-w~ight. "olun1_ prt.-.-et ventilators since 1978. This is a major advance from the original high energy requiring portable ventilator and the bulky mre sophisticated Tracheosta111es often have cuffs (511111 balloons) at the lower end to make a tight seal with the tracheal wall. For patients who can cough, it is safer to leave these cuffs deflated (or not use then). This reduces injury to tracheal 11Ucous lllellbrane and peraits the patient to speak. Some patients do need thelll for adequate ventilation or to protect the lung frm soiling fra11 gastrointestinal contents which leave the stomach, rise up the esopha gus, enter the trachea, and descend into the lungs.

PAGE 43

( OTA Task 2 Contract 533-4935.0 10/15/85 0 0 0 .1 ;~ -28 C stationary (console) ventilator. The portable device has an internal be.ttery which allows it to operate for at least an hour, if the external battery is no longer functioning or has not been attached. The ventilator can also run for 24 hours on an external battery; With this this type of portable ventilator, the elderly patient can move about on a wheel chair or by walking and carrying the ventilator on a small wagon. These portable devices have made ft far easier to permit mobility and can be used in a non-hospital setting. Up to now, they have been designed to be so simple that non-professionals can use them under the direction of a physician, nurse or respiratory therapist. A more detailed analysis of the characteristics of each type of portable IPPV respirators on the market today is attached (Appendix). 3) Patient-Machine Interface (Goldberg, Indihar) As the above discussion describes, patients can be ventilated by positive pressure ~~plie~ to the natural airway (mouth, nose) or-artificial airway (tracheostomy). The patient can also be ventilated by negative pressure applied to the thorax and/or abdomen; under such a situation, the natural air-way is intact and serves only as the port of entry and exit of gas, not the connection to the device. There are important reasons why it is best to maintain the natural airway if at all possible. Serious complications of artificial airways can be avoided (e.g. tracheal stenosis, erosion) but, even more importantly, nonnal function can be maintained. The natural airway provides pro-

PAGE 44

~OTA Task 2 Contract 533-4935.0 10115105 0 0 2 41 -29 -tection against infection, essential humidification and heating of inspired gas, a physiologic" positive end-expiratory pressure, and the means of spontaneous cough and clearing of secretions as well as normal speech. If the patient is able to breath via the natural airway, he/she can play a more active role 1n their self-care as well as in their assisted breathing. It has been shown for years that prolonged mechanical ventilation can be accomplished -day or night using the natural airway. This requires awareness, desire, and motivation; instruction on how to do it; and some innovative (but simple) technology to accomplish it. This kind of breathing (connecting a ventilator to the mouth or nose) also requires a conscious patient whose breathing requirements (volume/pressure) are not excessive, who can handle their own secretions (which are less without an irritating artificial airway in place), and who has a nonnal control of breathing regulation. Some patients may not be suitable for ventilation via the mouth or nose, and they will .,eed a lor.y-tenn artificial airway which wil~ ,I -pass t' .at&.. ... airway. In the acute situation, this can be accomplished for hours or a few days by endotracheal intubation. The risk of short-term intubation are less than with tracheostomy(lS)_ However, with time, the rate of complications becomes excessive, and, because of the difficulties involved with endotracheal tube stabilization, the risk can become life-threatening. Thus, the tracheostomy is the only long-term artificial airway indicated. It should be used in the patient with inadequate level of consciousness and/or contra 1 of breathing, poor contro 1 of mouth and pharyngea 1 muse 1 es, i nabi 1 i ty

PAGE 45

( OTA Task 2 Contract 533-4935.0 10/15/Sb () 0 ;2 4 30 -to handle secretions, and or high ventilation requirements (pressure/volume} that cannot be delivered via the natural airway. 4) Monitoring technology (Goldberg. Indihar} All patients who require prolonged mechanical ventilation must have surveil lance to be certain that their physiologic requirements for breathing are met. Thfs can be done by observation of caregivers and by technology. Physiologic monitors deten1ine whether or not a given body function is appropriate (e.g. heart rate, breathing rate); ff pre-set limits are exceeded (high and/or low), charactertstic alanns (light, sound) will alert another person that there is a dangerous and perhaps life-threatening situ-. ation. Non-physiologic monitors determine whether or not a given mechani-cal function or physical variable fs appropriate (e.g. pressure, volume temperature, exhaled gas composition); ff pre-set limits are exceeded (high and/or low), other characteristic alanns will bring inanediate attention to aeter~ine the reason why (fs it the patient or the machine?). Young and elderly patients alike require such surveillance. The degree of surveillance does not depend upon age, but the medical condition. If a patient has limited "free-time" (time when spontaneous natural efforts to breathe can sustain life). the surveillance must be greater both by human observation and technology. Under such circumstances, it 1s advisable to have more than one means of surveillance based on more than on parameter. This 1s far more important than the degree of sophistication of the monitor. Usually ventilators have built in some monitoring capacity; to prevent I/~

PAGE 46

( OTA Task 2 Contract 533-4935.0 ,un5,tff O O 2 4 3 -31 life-threatening situations, and reduce the chance of complications of prolonged mechanical ventilation, these monitors can be supplemented by others connercially available. However, often simple devices can be adapted for this purpose. Adaptations must be made by a knowledgeable biomedical engi neer or respiratory technician. For instance, the low pressure, high pres sure, and disconnect alarms built into all machines can be amplified and hooked into a light system over the door or central desk. Also, audible alanns can be amplified so that they can be heard some distance from the machine itself. A patient-driven switch/b~zz cOR111unication system or commercially-available inter,com system are two other examples. A very special alarin system has been installed at the Prolonged Respiratory -. Care Unit at Bethesda Lutheran Hospital, St. Paul, Minnesota: the Respiratory Intensive Care System (RICS). This system, through a tube attached to the patient's tracheostomy, samples gas exhaled at various intervals of time. The sample is analyzed automatically for the exhaled carbon dioxide; the results are stored in a computer, which t.a: a ra : for each patient. The alarm sounds if the patient's limits are exceeded. This device is not practical except for the largest institutional setting, due to the complexity and expense of the equipment.* *Another alarm system, designed by Rattenborg, uses modem and telephone line. This permits the monitoring of ventilator function and its transmission to a central area. (27)

PAGE 47

( OTA Task 2 Contract 533-4935.0 10/15/850 0 0 24-1 -32 -Monitoring devices are not effective unless people are prepared to interpret the alarms and correct the condition. In some instances, the patient's problems require a great deal of searching and elimination to detennine the cause of the alann. Primary caregivers in the home or alternative connunity setting must be trained to provide this type of expert care, and imediate emergency backup is required. Alann and monitoring devices have a special application to the elderly patient who is often debilitated and unable to operate conventional alarm buttons. Also, regardless of age, high pressure and low pressure measurements are not measurable by the patients themselves; rather, built-in ventilator monitoring systems are necessary to alert the health care practitioner to potential or real problems (i.e. disconnect of the tubing from the patient, build up of secretions fn the bronchial tubes requiring suctioning, etc:). 5) Preferred technology for elderly (Alba, Goldberg, Indihar) The technology preferred for the elderly depends not on age but on the etiology and severity of the patient's disease process(es) and the current medical condition. If an elderly patient requires mechanical ventilation, a device with adequate alarm capability is essential. This would reduce the lfklihood of c0111plications due to technical failure of the machine and would alert the caregivers of change in the general condi tion of the patient. According to lndfhar, ff a patient is at all selfsufficfent, a portable ventilator ts quite satisfactory, and would pennit the

PAGE 48

( OTA .' ') l ~.) 1-.. '-l 0/15/88 0 0 2 4 5 -33 -Contract 533-4935.0 ** *** elderly person a more active life. However, if the elderly patient is infinn, not self-sufficient, and not medically knowledgeable, a non-portable (console) ventilator with multiple alanns must be utf11zed (low pressure, low vol111111 high pressure, apnea). The elderly will also need devices to provide h1111idity1 oxygen and medical air, as well as suppli~s for appropriate artificial airway management. The experience at Goldwater with patients over 65 years of age who require continuous mechanical ventilation demonstrates that the elderly usually require a tracheostomy (TIPPV). This is true both for the elderly patient with intrinsic lung disease (COPD) and neuromuscular disorders. There are a few exceptions when elderly patients with progressive respiratory -. insufficiency can begin for 1-3 years with MIPPV. According to Dr. Alba, this is attributable to the physiology of aging (poorer diffusion, decreased functional reserve), reduced strength and ability to cough, diminished tolerance to infection, and the presence of other organ system disor~er~ It must be recognized that at 70 years .of age, the nonnal individual has approximately SOS of the vital capacity* and 401 of_the maximal voluntary ventilation** of youth.<28) Diffusion capacity*** also decreases with every decade of life.<29) Under quiet conditions, with youthful lungs, only 151 of The vital capacity is the largest possible breath one can take. The 111ximt111 voluntary ventilation is the largest amount of gas that can be breathed tn and out wfthtn one minute. Diffusion capacity is the function of exchanging oxygen and carbon dioxide between air sacs and small blood vessels in the lung.

PAGE 49

( OTA Task 2 Contract 533-4935.0 10/15/J O 0246 -34 the vital capacity is needed for ventilatfon.< 3o) Given the aging pulmonary syst and superimposed illness, it is understandable why the elderly patient Y usually require a larger than average tidal volu. The currently available portable vol1.1111e ventilators can et these requirements with supplementary monitoring devices. For safety, the equipment and its use must be fully explained to the patient, family members, and caregivers, and their classroom education and bedside experience well-evaluated and documented. Goldberg has found that the currently available state-of-the-art portable ventilator is not adequate to meet safety requirements for home care for children who depend upon prolonged mechanical ventilation. Portable venti lators have suddenly failed completely without warning, deviated from the desired written respiratory prescription, and have met not all the functional needs of the children at home. In order to protect these children from unnecessary risk, home care programs require more than one device in the the second device preferably being a console ventilator. There is a very great need to evaluate available portable technology and to review the experience of others with its use before its application becomes more widespread.* There is also great need for guidelines for ventilator care in the home and at alternative community sites.** *This is currently under consideration by the American Society of Testing and Materials, F29.03.09 **This is currently underway by an ad hoc c011111ittee of the Respiratory Care Section of the American College of Chest Physicians.

PAGE 50

( OTA Task 2 10/1 ~/85 Contract 533-4935.0 -3s _o o 024 7 6) C011plexity of equipment; feasibility of self-care, care by non-professionals (Alba, Goldberg, Indihar) Respiratory equipment requires that a caregfvermust clean and examine ft da1-ly, tubing must be emptied of water frequently, and humidifiers changed on schedule. On occassion, mechanical problems need to be tended to innedfately. For patient safety, and to reduce the number of malfunctions, regular equipment maintenance must be provided and backup emergency service assured by a home maintenance contract. Much can be accomplished by a properly trained family member, but the time required fn constant attendance to an elderly patient by a family member {spouse, son, daughter) 1s impossible. To provide under such circumstances, -. other supplementary caregivers are essential, and respite care alternatives should be made available. Self care, of course, can be one answer. However, this is only true if the elderly patient is partially ventilator-dependent: i.e. on the ventilator only at night and able to be off the ventilator for short per:ods durinr tl,e day. Generally, fort.,, patient who requires 24-hour mechanical ventilation, self-care is impossible and not a goal of treatment (Indihar). This opinion is in contrast to international experience which demonstrated that self-care up to the physical capacity of the patient is an essential success factor in home care and is possibly even for patients who must be ventilated day and night.(ll) In lndihar's experience, only the most sophisticated non-medical personnel have been able to handle complex medical problems with complex machinery. In 111ny instances, even professionals have difficulty under such situations and Yl

PAGE 51

( OTA Task 2 lO/lS/ff5() 0248 -36 Contract 533-4935.0 rehospitalizatfon has been necessary. Those best elderly candidates for home care by non-medical personnel have a combination of a disease (stable) and personality (fnte111gent, self-sufficient) that enables them to cope with crisis. Non-professionals can provide care in the home. However, an adequate care program must be established with professionals. Many home health-care agencies are available who can provide respiratory therapists, nurses, aides, and home-health care attendants to assist the primary caregiver in the home. However, up to now, such alternative caregivers have not been eligible for reimbursent by public or private funding polfcfes. In order to assure the cost-saving and appropriate utilization of such alternative caregivers, a care monitoring system must be established to monitor the situation at home (quality-assurance).( 3 l) For more than five years in kew York City, ConLepts of Indepenaence, Inc.+ has managed the financial arrangements for severely-disabled, self-directing persons in the conmunity who locate, hire, and train their own personal care attendants (Appendix). The Board of Directors are over 90i quadriplegic and ventilator-users, the president and vice-president included. At present, Concepts has over 210 clients and an annual budget of $5 million. Th~y service 37 ventilator-users, including six with tracheostomies. Initially, Concepts of Independence, Inc. 853 Broadway, Suite 1920, New York, NY 10003 (212) 477-7600

PAGE 52

( OTA Task 2 Contract 533-4935.0 luil!>/65 000249 -37 -patients have the training for their future attendants done by the hospital which discharges them; after that, the patients are expected to provide ongoing training for any new attendants they hire. Home care providers (Visiting Nurse Association/Public Health Nurse) visit the home once every six months. The durable medical equipment (DME) vendor, who has rented the ventilator and its accessories, visits the homP. once every six months or as needed for equipment replacement and repair. The ventilator user is expected to teach the attendant to maintain the equipment in good condition. Concepts has demonstrated that for the medically-stable adult ventilator users a personal care attendant can be a very satisfactory caregiver*. Their clients at hOllle are-very proud of their autonomy. *In April, 1985 the New York State Department of Social Services enacted new regulations to govern the provision of perso1nal care services to the disabled in the home. According to these regulations the provision of care to a ventilator-user and to a tracheostomized client would be given by a Level III home health aide with frequent visits to the home by a supervisory register~-' nurse. Enclosed is a copy of these regulaticms (Appendix). Concepts of Independence, Inc., has obtained a waiver frc1m these regulations. The self-directing client may continue in New York State to hire at the level of an atiendant if he so desires. It is Alba's contention that if family members or the client (who are non-professional) can be taught to operate even complex ventilator equipment used in the home, and they can be given complete charge, a client can be left alone with other non-professionals who have shown the motivation to learn and to carte.

PAGE 53

OTA Task 2 Contract 533-4935.0 10/15/85 .3a.OOOJGO Can non-professionals provide care in con111Unity-based alternatives to the hOllle? The answer is. yes. In France, a specially-designated category of caregiver with a governnt-authorized salary ($4.40/hr. in 1985) has become availible for care under supervision for ventilator-dependent adults in group living arrangements. Such caregivers have been trained extensively by regional associations and are under the direction of professionals. This has remarkably opened the option for connunity health care for such technologydependent persons.( 3l)

PAGE 54

( OTA Task 2 Contract 533-4935.0 10/15/85 .39_000251 H1stor1ca Background TASK 2 REFERENCES 1) Affeldt1 J.E.: Concepts of patient care in a respiratory rehabilitation center. Poliomyelitis: Papers and Discussions Presented at the Fourth International Polionwelitis Conference. J.B. Lippincott Co Philadelphia, 1958, p. 637. 2) Bennett, R.L.: The contribution to physical medicine of our experience with polfOlll,Yelftis. Editorial. Arch. Phys. Med. Rehab. 50:522, 1969. 3) Benton, J.: Hane-care program for the patient wf th respiratory diff1cu11t1es. Polf0111,Yelitis: Papers and Discussions Presented at the Fourth International Poliomyelitis Conference. J.B. Lippincott Co., Philadelphia, 1958, p. 643. 4) Engstrom, E.G. Treatment of severe cases of respiratory paralysis by the Engstrr~ universal respirator. British Journal of Medicine 2:666, 1954. 5) Emerson, J. H. Tr,"' Evolution of Iron Lungs (Avaiable frooi j. ,1. i .. Jon Co.1 Cambridge, MA 02140.) 6) Faure, E.A.M. and Goldberg, A.I. (eds). Proceedings o-f an International S.Ylll)Osium: What Ever Happened to the Polio Patient? Northwestern University Press, Chicago, 1982. (Available from Education & Training Center, Rehabilitation Institute of Chicago, 345 E. Superior, Chicago, IL 60611) 7) Hawkins, L. C. Lomask, M.: The Man in the Iron Lung. The Story of Frederick B. Snite. The World's Work Ltd., Kingswood, England, 1957. SI

PAGE 55

OTA Task 2 10/15/85 Contract 533-4935.0 -40 _000~52 8) Kaufert, J.M.: Disability and the Aging Process: A Longitudinal Follow-up Study of PoliOl!,Ye11tis Patients in Manitoba. Department of Social and Preventative Medicine, Faculty of Medicine, University of Manitoba, 1984. 9) Landauer, K.S.: A national progr111 of respiraoryand rehabilitation centers. Po11011tYtlitis: Papers and Discussions Presented at the Fourth Interna tional Poliomyelitis Conference. J.B. Lippincott Co., Philadelphia, 1958, p. 632. 10) Laurie, 6.: Housing and Haae Services for the Disabled. Guidelines and Experiences in Independent Living. Harper & Row, J blishers, Hagerstown, 1977. 11) Laurie, 6. Realistic arithmetic: Re1110ving quads from hospitals saves dollars, makes sense. Toaaey J. Gazette. 7:2, 1961. ( 12) Nagi, S.Z., Burk, R.D., Clark, D.H.: Report on a Survey of Respiratory and l Severe Post-Polios. Ohio Rehabilitation Center of the College of Medicine, Ohio State University, Columbus, May 1962. 13) Perkins, D.J., Affeldt, J.E., Callahan, E.B.: The h0111e care plan of Rancho Los Amigos Hospitil. Unpublished report, 1956. (Available from Gini Laurie). 14) Stickle, G., Chief, Statistical Services Division, the National Foundation of the March of Dimes. Personal c011111Unication, July 16, 1959. Technical Background 15) Downes, J.J. and Goldberg, A.I. Airway Management, Mechanical Ventilation, and Cardiopulmonary Resuscitation. In Pulmonary Disease of the Fetus, Newborn, and Child. E. M. Scarpelli, P.A.M. Auld, and H.S. Goldman (Eds). Lea I Febiger, Philadelphia, 1978, pp. 99-131.

PAGE 56

(, ;,; Task 2 -, u/ 15/85 Contract 533-4935.0 -410002 5 3 16) Allerican National Standard for Breathing Machines for Medical Care: Z79-7. American National Standards Institute, New York, 1976. 17) American College of Chest Physicians American Thoracic Society, Joint C01111ittee on Pulaonary N011enclature: Pulmonary Teras and Symbols. Chest 67:583-93, 1975. 18) lndihar, F.J~, Forsberg, D. Experience with a prolonged respiratory care unit. Chest 81:189-92, 1982. 19) lndihar, F.J., Walker, N.E. Experience with a prolonged respiratory care unit revisited. Chest 86:616-20, 1984. 20) Make, B., Gilaartin, M., Brody, J.S., and Snider, 6.L. Rehabilitation of ventilator-dependent subjects with lung disease. The concept and initial experience. Chest 86:358-65, 1984. ( 21) Splaingard, M.L., Frates, R.C., Harrison, G.M., Carter, R.E., and Jefferson, L. S. H0111e positive pressure ventilation-twenty year's experience. Chest 84:376-382, 1983. 22) Lee, M.H.M., Kahn, A., Alba, A., Rusk, H Co11111Unity living for ventilatordependent individ~ ls: A qu;-~er-century overview. The Jjurna~_ Developments in Clinical Medicine (1st Quarter) 31:40, 1985. 23) Rattenborg, C.C. and Via-Reque, E. (eds). Clinical Uses of Mechanical Ventilation. Yearbook, Chicago, 1981 (new edition available 1986). 24) Shapiro, B.A., Harrison, R.A. and Trout, C.A Clinical Application of Respiratory Care. Yearbook, Chicago, 1981. 25) Frownfelter, D.L. Chest Physical Therapy and Pulmonary Rehablitation: An Interdisciplinary Approach. Yearbook, Chicago, 1978 (new edition available in 1986).

PAGE 57

( ( OTA Task 2 Contract 533-4935.0 10/15/85 -42600254 26) Alba, A. and Pinkington, L.A Neuromuscular Disease with Respiratory Insu fficiency. In Current Therapy in Physiatry, Rehabilitation Medicine, and Rehabilitation. Asa Ruskin, and Miknla, R.J. Ventilator Surveillance ed. W. B. Saunders, Philadellphia, 1984. 27) Rattenborg, C.C. and Mikula, R._J. Ventilator Surveillance.. Critical Care Medicine 5:252-5, 1977. 28) Rehabilitation Medicine, Howard A. Rusk, ed., Chapter 31 Geratric Rehabilitation. C. V. Mosby, St. Louis, 1971. 29) Respiratory Function and Disease, Bates and Christi, eds. Table V (men) and VI (women). 1966. 30) Respiratory Muscle Mechanics and Neurologic Control E. Campbell, A. Agostoni, J. Davis, eds. 2nd Edition. W. B. Saunders, Philadelphia, 1970 -(pg. 96). 31) Goldberg, A.I. Home Care Services for Severely Physically-Disabled Persons in England and France. Case-Example: The Ventilator-Dependent Person. International Exchange of Experts and Infonnation in Rehabilitation Report #208. World Rehabilitation Fund, Inc., New York, 1983.

PAGE 58

.. J ( ,. ,,; ewei .. Contract 533-4935.0 LIFE SUSTAINING TECHNOLOGIES AND THE ELDERLY PROLONGED MECHANICAL VENTILATION TASK 3. DATA ON UTILIZATION AND COST I I October 15, 1985 Prepared By: Lu Ann Aday Marlene J. Aitken Susen Dunmire in association with: Candice Clark Sam P. Giordano Allen I. Goldberg Bernard Goldstein Ann Koterla Howard Robboy ... ,-, \ I 1 ieitt 1 t ct 1 1 i ,. t i1 000255 S5

PAGE 59

liii*,:a'ffi'~i,i''i_Fl"~j'j ,::;~~~~~1;;,_,.-,...,~a--_,... ...... 4_,.c-w-,,..;~Dc""" .... ._.;;,..._.,~_::_.._..... ..... _,...,_,, ... ,.,.....1 MNit n....,,.-,--~-.,t~-~.,wwWwwwiiiwu;~,..,~;-~-w,,11.,;.,;.;,-..,.,.,., .. ,.,..,..,~,., .. ,,.,.. ,.,.,._,,.,,a~ .... .. ..... '" .... ?~1FL .. L .. 000256 ,.. Contract 533-4935. O ',. (-' .... t ...... ;, LIFE SUSTAINING TECHNOLOGIES AND THE ELDERLY PROLONGED MECHANICAL VENTILATION TASK 3. DATA ON UTILIZATION AND COST The questions raised by OTA concerning the data on utilization and cost were ans~red by a group initiative coordfn.ated by The Center for Health Adlllfnistratfon Studies, Graduate School of Business, University of Chicago. The major contributors to the enclosed doc1111ent are: Lu Ann Aday, PhD -Research Associate (Associate Professor), Associate Director of Research Marlene Aitken, MANS, OTR/L -Study Dire~tor, Research Project Specialist Susen Dunmire, MA -Research Project Assistant The associated contributors to the survey design, implementation and analysis effort were: Candice Clark, PhD -Department of Socfology,-Montclair State College, Montclair, NJ Sam Giordano, RRT, MBA -Executive Director, American Association of Respiratory Therapy, Dallas, TX .. \ l

PAGE 60

~~--';,,~~.,~., ..................... ,. ................. .,w .......... .., .. w~w~) t l:l-'"'"' .. "'"' .. .... -.......................... ,11,.,_'."'., .... ., ........ .. .., .... .,_,_ ..... _____ ............. ~.~: ; Jr--,' t.:: "t:~ r:,,,, ', t'\, t, 0 0 f ~-57 i: ( Contract 533-4935. 0 ~,-' ', ( Bernard Goldstein, PhD Departlllent of Sociology, Rutgers, The State University, New Brunswick, NJ Ann Koterla, MBA Consultant, Chicago Lung Association Howard Robboy, PhD Departlllent of Sociology, Trenton State College, Trenton, NJ ,., \ \ 57

PAGE 61

' Contract 533-~~.o Acknowledgements Special recognition is given to the Chicago Lung Association and to the following officers who have 111de a personal ca111ftt:111nt to the OTA Study and authorized the consultation of Ann Koterla. This de possible her participa tion as a Jor contribution by the Chicago Lung Association: John L. Kirkwood, Executive Director Richard L. Hughes, MD, Past-President Karl F. Nygren, President Special recognition is also given to the American Association for Respiratory ( Therapy and Sam Giordano, Executive Director, who conducted a national survey of the lllllllbershf p for the purpose of this OTA Study. ( .... Appreciation is also noted for the assistance of Dr. Joseph M. Kaufert, PhD, Department of Social and Preventative Medicine, University of Manitoba, Winnipeg. Dr. Kaufert provided IIIOdels which helped in the initial phase of design of this survey. Sf

PAGE 62

:::... ... ~. --. ""' --. .. :-.:~~~" .............. ..., '" ............ ,.~ ,.. ............. ,, ,,, ._-. .,,.,.vtJ.:-....._ ..... 1 .. ~~..,..., .. .,.,,.-,.,.~"-..--.w._ .. .,,,..,.,,~ ..,"'"".....,"""'~~- ..... .. ,,,., .,. --.,.,, .. ___ ............... .. .. ....... ,J !-h ; 1. ( l 000259 ot. ~or citation or quotation wit.bout. t.h aut.bora pera1 .. 1on c .. c:apt. Th Of''Eic Tec:lulol09y ....... ant.> OFFIC8 OF TBCNIIOLOGY ASSBSSNUT Prolon,ecl Nec:hnical Vent.ilt.ion Taak.3. Data on Ut.iliaat.ion and Coat. Fl.AL REPORT su .. n Dunaire. N.A a .... rch ProJect. .. tat.ant. Barln J. Ait:.Jcen. N.A.K.s OTR~L --arch Pro3ect. Spac::ialJ.at Lu Ann Aday. Ph.D a .... rah Aaaociat . Aaaociat.a Direc:tor ~or Ra .. arcb Th C.nt.er ~or H .. lt.b Adainiat.rat.ion Studt Tb Diiaion d 8iol09ical Sc:ienc Th Gradut.e School o* auain Th Uaierait.y o~ Cbica90 5720 South Woodlwn Cbica90. IL 60637 (312) 962-7753 October 1985 Thia doauaent. auperced ~h S.pt.eaber 1985 preliainry report.. s,

PAGE 63

( TAIi.i OF COIITDTS GfflCI at TICIIIIOLOGY AIIIIINIIT TMII I. Data UtilJ.uU ad-Coat. Introduati Put. I. llaU--1 Data la~ 4 MIT SUne, of V..tilt.or Auiatad Iadividuala: Callpariaall of 1W aad 1915 8uner .. t, ... 1 ar.-,~,.................................... 12 Part II. ...i ... 1 ~t.ut.iGlla C... Studi Part III. Coulttr Caae lt.udiSO (' Clliaa.,.a 52 (. ., '--: ._ Tons CitJSS Caaaluai Part IV. Caaaluaiw .... laclndaUODA 70 Part. v. lpilotM UST ar TM'IS Talale 1. ..U_l Data Ia""torr Mirr 1uneJ of Vtilt.or ANiatM llldiwiduala, Q Trt&en 9( 1111 & PIY~s Tallle 2. TMl 1. a.uGN1 Dau 111....-,. 11euGN1 ar, ,.uw. In 11fcrn'i Pnn&MMnr bs n "'9 bl(11, 1s Tallle 4 .... ,-1 lUt.uUw C... lt.udi, AIM JVICtC:i erac,,. 9( 95cm ISP rted ', \ ,,

PAGE 64

. ;",. .-. ,. .. ... ,, .................. w,.~.,, .................. ,., .... ,: ........... -. ........... L.,.. .. ..w.~,,ww..rw ... w .... -.. ............... .-.,. .... ..., ... .... ,,, .... ,..,~ .... ,"'""' ............. 1 .. ......................... ............. _., ......... ---~ -.. .. -( l Table 5. ..., 1 Inai.Jtutiana Ce Stucu .... hltn BIIMPH .. ,. Pnl(il9 41 Table,. ..., .. 1 Iut.it.uuaaa ea.. Stucu .... 9PM: JHMM B19arclipg Pr9Jal4 lecben!ai Yw\&4\&91 (or vai, .......... 44 Table 7. ca..it.y Cue Stucli.-CbicatO PIH Ipypt.ga: Praf&& 9f 9scr BIPw:teds' Table Collllit.y c... Stucu... Clu.C8f0 ""'"" BlcMPM Bl1il Pnl(il9 62 Table t. Ceuuait.y Cue Stucliu. CbiC8fO 9PM: JHHII ... ,nlipg Po19Q91d &sbtPAsl V91;1111;1gp (K Y4Jt Tble 10. CollaunitJ c. .. Stucu.... ._, York. Pt\t Ipngt.ga; '"'"" Pgg(ilt 9( CfHI B,pgrtacl ~ Table 11. CoMitJ c... stuc11 ... ..., York. IMPHEI Berner "" ,,.,,, 69 Appaacllx a. lletiwl Date IaMDtor,. AART luney of Ventilator Auiat.ed IadiYicluala, ffff AIN,!fflp,if1 App1adi 1 ... u-1 Date IIIY911tor,. AART aur.., of Vtilet,or AuJ.ated Jadiicluala, YIS: 9( lhtu BnrSIII ao Ananc11x c. 11au .. 1 Data ra ... tor,. t.1w1 Orpaiaet1w. In JR(R111\ AElll&Htrtre~ a1 Appanclix D. leUwl Date ln .... tor,. leU1onal ar,uiutiona. lfUM9l AIY JYIIYEl Appanclix I. ...ional Inatitution C... Stucli Lit; g( Appanclix F .... ioul lnat.itutiou ea.. St.ucli PIH IpY19t;gry 94 Appaaclix G. 1 .. .. 1 Iaatitut.iaaa c:... St.ucU., 1Mn 9( YM\ilayrruJ94Mt ,.. .. n "'1,,,,.,,n1: ... DAus&s Sgc;&11i1 end uw ..,, .. bM9 e,rr,,,,. 9# kea1Mtt.t, IMM, 1113 100 Appmclix I. l .. ioul Iaat.it.ut.iana ca.. Studi, Stycly of DJ ip p Jrtrean Otn 0p1t. d r111Clfl&M BttN,t.11, 1,aa-1,.. .. 102 000261 G,

PAGE 65

,' ,''-~-........ --~ .............. .. -. --,....... .. ~. --... -......... ---........ -..... .. .. ........ ;,i~ ...... ...,.._ ,....... .... ..., .. ..,,~ ... ,., .,,, _,.._ .,J ...... _,.",.""""",._ .., -..wwW''...........,.,.._...,..... 0 tefllllvlltilW....,..~-...,... ..... -.....,,, .--.,.,.111,.w .w11"-"""'"""'"'"IIIW.....Ww.w.M....._. ............... _,.. ____ ___ ___ ;::? Con1:.ract 533-4935.0 000262 INTRODUCTION In t.h apr1n9 o* 1985 t~e Of~ice of Technology Aaaeaaaent. COTA> i .. uec:1 call ~or in~oraation on li~e-auatain1n9 t.echnolo9iea and t.be elderly. wit.h part.icular eaphi on t.he uae of aechanical vntilation ~or chronically ill elderly patient and for t.hoae acutely ill elderly who dependence on ventilat.ory aupport waa prolonged cs .. OTA ... Life-Suatainin9 Technologi and t.h Elderly: Prolonged Nechan1cal Vent11at.ion--St.atnt. of Work.">. Dr. Allen I. Goldberg, Nedical Director, Diviaion 0 Reapiratory Car. The Children Neaorial Hoapit.al. Chicago, raapond~ to tbia call ~or in*oraation and aakad t.h Center or Health Adainiatrat.ion Studiea , Th Univeraity 0 Chicago, to participate in Teak 3, apec:i~ied in the OTA Stataaent 0 Work for thia proJect.. Taak 3 involved a review and interpretation 0 available data on the utilizetion and coat 0 aervic for elderly individual on prolonged ventilator aupport and within liaitad ti and ~und conatrainta. t.he collection and analyaia 0 other relevent data on the prevalanc 0 elderly ventilator aaaiated individual and their utilization and coat experience. Thia report auaaariz the reaulta 0 th work on Taak 3 by the Center ataf and t.heir collaeguea during th aontha 0 July and Auguat, 1985. ~~~~~~~-~----~-~~~-----~~~-~---~~~----------~-~---~----------~-- Thia aection waa principally prepared by Lu Ann Aday. Ph.D Re .. arcb Aaaociate . Aaaociate Director or Rrcb. ..... 1

PAGE 66

, ; ( (. 000263 Tnr t.1era os dat.a coll .;.:t.ion--at national. regiona.:. c:.: coaaunit.y level--wer carried out in connect.i~n wit.h Taak 3. Two data 9atherin9 fforta at t.he nat.ional level are reported in Part Id t.hia rport.: <1> t.h coapariaon 0 r .. ult.a roa 1983 national aurvey conducted by th Aaerican Aaaociation 0 Reapirat.ory Therapiat.a 0 th nuabera of ventilator aaaiated individual identified by at.ate AART reprentetivea wit.h coaprabl at.udy conducted in July 1985 and <2> a net.ionel data inventory of over fifty organizetiona that.deal direc~ly or indirectly wit.h th healt.h care 0 the elderly t.o deterain th availability 0 ext.ant. national data b on thia population. At. the regional level eleven inat.it.ut.iona reprntativ of n r~giona 0 t.h country and Canada wer identified by OTA and Dr. Goldbrg Jor provider of care for ventilator aaaiated individua1a in their rapective areaa. Th inat.it.utiona were cont.act.ad and detailed data on th age. diagnoaia. len9t.b of atay. degree 0 ventilator dependency, and aource 0 payaent. of elderly VAia rved by t.en of th inatitutiona in a randoaly lct.ad week during th atudy period were collected. Th dat.a roa th regional inat.itutiona caa atudiea are auaaarizad in Part II 0 th report. 1 en overvi.ew of other relevant. iaau in caring for thi population identified by the regional ca atudy aite repreaent.ativ Part. III 0 the report. auaaariz th reault 0 c atudi conducted in two aa3or aetropolitan areaa--Chicago and New York--wit.h particular eaphaaia on the network of inat.itutiona that rve elderly VAI in th citi 2 G., 3

PAGE 67

( (. 000264 Th naly ~arized here provide variety -~ perapectivea--t nationel. regionel and coaaunity level--0 what 1 known bout thia population: how aany there are. their diatributiona. aedical probleaa, how they pay or their care. and 1:.h iaauea that th patient t.heaaelv t.heir aail1 a~d t.h inatitutiona and pro* ... ionala caring or th conront. It repreaenta a aodeat atart. with liaited ti and reaourc in providing ayateaatic deta on th elderly auatained on prolonged aechanical ventilation, where little or no inoraation exiated beore. \ \ 3

PAGE 68

,:c~~_x,.--,. -if!j,.:.............. ...... .;. .... .,_ .. __ ._._,,._"'""-a~---..... ...-.--.. : ,., : 000265 PART I IIATIOIIAL DATA IIIVUTORY AIIDICWI ASSOCIATIOII OF RUPIRATORY Tll~PISTS SURVaY OF VDTILATOR ASSISTBD IIIDIVIDUALS: COIIP<l9QII OF 1983 AJID 1985 SURVBYS Jpt;rpc1yc;t.1gp A part d t.b M~ica o6 Taclmology Aaa .... ant.'a at.udy o prolon9ecl ecbnicl vant.ilt.ion in t.b lderly. t.h Aaerican. Aaaocia~ioa d Reapir-t.or., Tberapiau and it.a Execut.iv Direct.or. Saa Giordno repeat.eel it.a 1983 aurY o vent.ilat.or depeacleat. incliicluala in tb Unit.ad St.at.a. Each fd t.h AART at.at. repreaent.t.iv .. were aaked t.o coaplt. qu .. t.iODllire coaparable t.o that uaecl in t.b 1983 aurvey . In Tbl 1 t.b .. dat.a are auaaariaed. Table 2 diaplaya t.h 1985 -.lat.a by cenaua region and t.b rat.ea per 100.000 elderly 'lor VAi int.ho .. regiona. Th diacuaaion t.b:. 'lollowa auaaarizea t.he .. det.e ~ro t.b two aurveya. ---------&F -----ML F ------& a -----~---....._. .. __________ -- Tb.la a.ct.ion vaa principall.y prepared by Narlen J. Aitken, N.A.N.s OTR.IL. The aut.hor 9rat.eully acknowledg t.h data-provided b7 Sall Giordano, Bxecut.ive Direct.or~ t.b Aaeric:an Aaaocit.ion a* R .. pirat.ory Therapiat.a. uaed int.he aaaly .. a report.eel bare. ., For 't.b purpo ... d tJIJ.a report.. t.he t.era vent.J.lat.or 9y1at;ac1 individul will be uaed. I 4

PAGE 69

2~ ,fl'.__. .... .. .. .. .. .. ... ......... .,. ................ _,.,~ ....... -............ -. ........ -........ .......... ... ... Cont.rot. 533-4935.0 TA8LI. 1. ATIOJIAL DATA IIIVEJITORY o o nas s ilRT SURVBY OF VDTILATOR ASSISTED INDIVIDUALS ca,vrteen of iHa 104 1,u Qat, YMJ4Nel IH3 1us 21 (4~> 37 (74> STATD RBPORTIIIG TOTAL YA%a RBPOIITED 2272 3771 TOTAL 1 HOSPITAL under 17 18----64 as yra. and older A9e Dot. report.ad TOTAL DDIID A8LB TO GO BOIIB Cd t.bo .. in t.b boapit.l.> uader 17 ----64 65 yra. and older not.report.ad TOTAL VAia AT amm under 17 sa---65 yra. m8d older A9 not. report.eel TOTAL VAia OTHBR PLACE IISAN DAILY HOSP COST TOTAL ANNUAL COST llbJI NOJITIILY HOE COST TOTAL ANNUAL COST UIIBER OF JNSTITUTJOJfS OIi WHICH DATA AR& BASED 2272 19.3 < 438> ss.o (1159) 29.6 < 673> 0.1 < 2> 13.0 ( 258> 16.8 ( 62> 14.6 < 1SS> 16.5 < 26> ( 15> ot. reported No1:. repor1:.ed 8 742 8270.830 81776 821.312 23?9 18.7 C 445> 38.5 < 916) 42.7 (1016) 0.1 ( 2> 34.2 < 813> 28.9 (129> 36.6 (335) 34.3 (349) 1279 19.2 (245> 61.5 (787) 17.2 <220) 2.1 < 27> 113 824 8300.760 a53 ,236 422 ---------------~--~----------------------~-----------------~---- TOTAL VENTILATOR DEPENDENT INDIVIDUALS IN 20 STATES -1992 VAia; PERCENTAGES OF PERSONS DEJNED ABLE TO GO HON& FRON AART REPORT HOSPITALS ONLY. INCLUDES HOJIE CARE AGENCIES. \ I ; s

PAGE 70

:.. ....................... ___ .. ... --....-...:.-~-...... :-:~.~-.--:-:: .: .""::~=-:-::-.:.-:i-:..~ .. .~..; ... .-.,:.-~-~-;-.:.~.":":. ~. .-. :1-; r., -~ -..-.:...... Contrat 533-4935.0 000267 19Sihodpl99Y la 1983. tb AART at.t.eapt.ad to identiy t:.b nuaNr o ftmt.ilat.or eaaiat.ecl incliiduela in hoapit.ala unable t.o 90 hoa becau .. d reillburwent. regulat.iona. A~t.er an ext.enaive but. f'nait.1 ... lit.eret.ur aearcb, t.b aoc1at.ion u.ndert.ook aat.ioawide aurYey t.o det.era1ne bow aan7 0 t.h patient t.her were. Tia direct.or m .. cb at.ate aociety or reapiratory therapy wer aakecl to: 1> ident.i~y t.be vent.ilt.or iat.ed individual ia inat.it.ut.iona in t.beir at.at.J 2> aulkiivide the .. by age: 3> det.eraine t.be nuaber d lon9-t.era vent.1lat.or patient.a wbo were aedically able 1:4 r~v epproprJ.at.e care at. hoaJ 4> identi~y coat. oE inat.it.ut.1onal car and eppropriat. ho care ... cb data collect.or waa cont.act.eel t.o aaaur conaiat.enc:y 0 aet.bodol09y. Tb ... dt.a were auaaerized by a proeaaional at.at.iat.ician and t.h reault.a were publiahed in t.h AART Ti in Apri.1. 1984 CS.. .. The AART aakea the E o'clock newa," 64~ TJ.aea Vol. a. 4. 28-31. 1984>. Ia July 1985, Saa Giordano. Executive Direct.or~ Th Aaericen Aa~i~ion o R .. pirt.ory Tberepia~a. agreed t.o repeat ~ir 1983 aurYey wit.b addition to provide ~urtber dat.a on t.be ven~ilt.or popult.ion . Th direct.or or AART in .. ab at.at.a were aaked t.o coat.act ainiaua 0 t.en inat.it.ut.iona in their t.t.e t.o det.eraine: 1> t.b nuaber 0 VAI int.he iaat.it.ut.ioaa1 2> t.b age~ t.b ... patient.a: 3> how aany VAia were at. hoaJ 4> t.beir .... S> t.he coat.a 0 ,inat.it.ut.ional care or VAla1 and&> 1:.b coat.a~ bo care or VAia. Tb ..

PAGE 71

,...-6., .. N h ,I" .. ._,} ......... ~w.J .. l'IN"l>fW-.l,#WW...-..W ...... .,....,.. (JWUW, ......... f Q ....... ~.....,._,W ..... WW-..IU fWllfWWWWtr,Mil,~.... .... k .. Conu-aat 533-4935.0 000268 queationnair war returned to Nr. Giordano by t.h end 0 Jul~ end t.hen .. nt. t.o t.he Center or Heelt.h Adin1at.ret1on Studiea et. Tb Univeraity o* Chicago t.o analys. Bylt.a Tb reaulta o~ the 1983 end 19aS aurveya er auaaarized in Table 1. In 1985. thirty-.. ven atatea <74-0 the SO att> returned report coapred t.o 21 <42-> in 1983. There were 19 att. that were included in both aurveya . The total VAJa raportd hoapitalized waa 2272 in 1983 and in 1985. 2379. In both aurveya. t.he AART reaearchera identi~iecl tho patient d ... d aediclly bl to 90 ho 1 reiabur .. aent. were poaaible. Th 198S aurvey not.ed t.het 81.3 could ~oho with the bi9beat percentage 0 patient in the 1864 age 9roup. The 65 and o~dr had t.h largeat nuber <349> able to 90 ho i~ aucb undin9 were available. Hoapital coat or care 0 VAia wea reported at. n annual coat 0 270.830 in 1983 end .760 in 1985. The average aonthly ho care coat waa in 1983 nd ass in 1985. Both atudi aupport th preaiae ~ha~ bl~h car co~ could b reduced aubetantielly 1 tho aedically able t.o go ho would be diacharged to ho care. In 1983, tb .. vinga were proJacted .S18 per patient annually end in 1985. t.hia aaount could be high .S24 per patient. Tb inatitutiona on which deta were baaed incrd ro 106 to 422. However in 1985. ao~ ho egenciea war pled in addition to the boapitela aurveyed in ~h 1983 aurvay. In Table 2, t.h VAia 6S end older ere aorted by region end ratea.per 100,000 elderly in tho region era given. I t.h ,,\\ 7

PAGE 72

000269 C:Ont.rat 533-4935.o probability 0 being placed on a ventilator w no dierent by r .. ion tben ita prevalence abould ri with increaaed nuaber o~ peraona 65 nd over and deer--witb lower nuabera 0 peraona 65 nd older. Table 2 however caata o doubt on tJaia uaption. Altbou9h th Niddl Atlantic Re9ion haa the largeat nuaber 0 people 65 and over and haa th aecond higheat rate <9.3>. the Mountain Region with th eweat peraona 65 end over h th hi9heat rate <11.6>. The nuaber 0 VAI or th Nountain Region principally relecta tiatea or th atate 0 Arizona, long aaoua or th benecial eect 0 1~ dry cliaata on reapiratory di .. a .. and t.h reaultant attraction 0 individual with auch ailaenta to that atate. The Niddl Atlantlc Region, in addition to having lerg elderly Q population, lao baa rel aedical center apecializing in th treetaent 0 condition requiring ventilator aaaiatence. Th .... ia true or New England Region Boaton ia well-known or the reapiratory center at 8oaton Univeraity. Th high nuaber of VAia in South Carolin contribute greatly to the high rate in the South Atlantic Region, do thia re9ion1a large nuaber of elderly. 8

PAGE 73

...... --~!'~--...... ............!c. ........... .__, ............................... -~ .--h-.. ~~-~,.-.. -.,-.'':,;,\.-,:-,->~ .. ,~ ............... .................. ,., ......... i ........... ............ 1 .............. ,1.11,,, ...... 11, .. ,.,,,,.,. .,.,,,. ,,. .-o;~:,, Con~ra~ 533-4935.0 TABLE 2. NATIONAL DATA INVENTORY AART SURVBY OF VDTIUTOR ASSISTED INDIVIDUALS YM\41\pr 4H41\tpc1 Ja44Y44vi I 104 Oyer by Bn4o, 198S REGION POPULATION (65> VAJa <65> RATE PER (000) 100.000 65 EASTS_ CDTRAL (4) 1.797 77 4.4 NOUNTAIN (2) 449 52 11.6 WESTS CENTRAL (3) 1.722 28 1.6 PACIFIC (3) 3.423 76 2.2 NEW DGLAJID (5) 1.469 101 6.9 SOUTH ATLANTIC (6) 4.168 3$0 7.9 aAST N CENTRAL (4) a.497 42 1.2 WEST N CENTRAL <7> 2.298 87 3.8 KIDDLE ATLANTIC<3> 4.784 443 9.3 TOTAL REGIONS <37> 23.527 1236 5.3 -~, I .' \ I 9 I

PAGE 74

:, Cont.raot, 533-4935.0 000271 eoncJva Sine only 15 of t.b 1983 atat are repreaented in the 1985 data. and th reliab~lity 0 the eatiat provided or t.be .. 15 atatea ia quationabl , ..,, reliable 9eneralizeble interpretation can be d 0 di~erencea between 1:.be two ti perioda. One could au99eat t.bat tho .. att included have ewer VAi that there are ewer VAI tbeD 1983 or that tbe boapitala tbat were aeapled do not have aany VAia. In aoae atat tbe direction accoapanying th queationnaira were aiainterpreted nd \iaat 0 VAi we~ uaed rather than actu~l nuabera reportad by .. apled hoapitala. So reapondenta Pld ho care a9enci to deteraine th nuabera 0 VAia at bo and aoae did not. Th wide rang reported in the coat data Y indicate ~bat wht wea included in th auaa Y have Accordin9 tq the 1985 data. the largeat nuabera who coulc ho 1 reiaburnt waa vailabl are in th oldeat group. Altbou9h t wouid --inencelly prudent or the P 0 conaiatent ho reiaburnt policy. other conaiderationa other tban aedical criteria Y need to be conaidered beore th patient are diachargect. however. extenaive diacharge planning ia neceaaary to enaur a aa and beneicial environaent or the ventilator patient. Even 1 reiaburaeaent ia aandated, aaaurancea auat be d that all neceaaary aervice are available in th patient~ ho coaaunity. It 1 not eaay to create a ainiatur ICU in a ho wit.bout qualii~d aervice provider dquat nd apace in the ho requent ollow-up and 10 ~,

PAGE 75

,, 000272 perbp aoat iaportent. willin9 ~aaily. Alt.Jlou9b 1:.11 AART at.udy had ao liaitt.iona not.eel bo it dw ba lu in tJaat it ia 1:JI only net.ional dat.a evailabl on VAia end provid .. an cwerview on nat.ional acope roa t.h perapec:tive d .. iaport.eat group* aneillery pro~ionela .. rvin9 t.hia populat.ion. 11

PAGE 76

.. .......... h,.-....... '-................ .4 .. -i .. -.. ............ ~-,..--................... h ...... -...&. ...... ~WH":rntdWdhhtn"~-~ ................. N .. ... .... .......... '-............ e1 ................... ___ ..,._ ................ Ml ... ( (0002,'3 ATIONAL ORGANIZATIONS Ipt.roctyct.100 A liat 0 relevant key inoraent national inatitution < Appendix C> waa .coapiled by the re .. arch t. .. a. Th organization deal with the eldarly and/or patient with reapiratory probl Th purpo .. 0 contacting th iaatitution w to deterain who collected inoraation about t.hia population. what type 0 data waa collected. and would it be acceaaibl or u .. in thia atudy or aubaequent on lt.bodolosv Th or in Appendix D include the protocol uaed or data collect.ion with th inat.itut.iona. A telephone call waa d to each inatitution, key individual waa identiied who waa knowledgabl about. the data b and then th National Data Inventory ora waa edainiatered. Bylt.a Th reaulta 0 th .. contact are auaaarized in Table 3: The National.-Data Inventory, National Organization, key Inoraant Organization Reapon .. Rate Proile. Th aJority 0 organization did not collect any data at all on thia apec1ic population, but aany provided the na 0 other organization to -----~--~-~---~~---~-----~---~~-------~-~~--~---~----~----~-~~-- Thia ction waa principally prepared by Suaen N. Dunair. N.A., Rrch ProJect Aaaiatant. Th author grateully acknowledge th inoraation provided by Ann Koterla, N.8.A., Conaultant t.o the OTA proJect, th Chicago Lung Aaaociation. and Howard Robboy, Ph.D., Trenton State Collg. New 3rY Candie Clark, Ph.D., Montclair St.ate College, New JrY and Bernard Goldatein. Ph.D., Rutger Univeraity. New 3rY 12

PAGE 77

. -~~-_... --.,.:.,.,.,.,....... h h .. 1111111 .... .., .a ... ., .. ,, Jg. M llPII t J ..-tww .. w..aww.,.,,...,,...__,.~, .... ,"-...... .. a-,.1w..1h.._,,,.:w. .. .. w ........ _. ...... .., .. -. hh .... ,. ........ .......... ( 000274 Cont.rac:t. S33-493S.O contact. One proeaaional organ~zation. t.be Aaerican Acad .. y 0 Featly Phya1ciana. could aurvey th atat t.hrough ita atate faaily pbyaician network. 9iven t.hr to our aontha. The aaily phyaiciana would be able to report on VAI 65 and older in their precticea. The ational Center or Health Statiatica had diagnoaia inoraation, but not apec:1c to VAI 65 and older. Tbeir data are categorized ~y DRG cod There ia no DRG code or ventiltor patient snd there are variety 0 DRG cod that au. lead to being ventilator iated. A ew organization~, naaely The Viaitin9 Nur ... A .. oc1ation, L1ec:are, Inc Aeaed, and Aaerican Abbey Hoa Ceredo bave dia9noaia, ventilator length 0 _ty , nuaber 0 hour per day on th ventilator and aource 0 payaent inoraation. There are two probl in obtaining thia inoraation: 1> they require letter deacribing th atudy and how th inoraation will b uaed, aa well aa a conidentiality atateaent: and 2> the ti re to retrieve the inoraation rang roa one to three aontha. We have received a confidential auaaery 0 data on VAI rved by on DNE vendor. concluaiona A national data inventory 0 key inoraent organization revealed that w organization ere collecting date on th ventilator iated elderly. There aay be aeveral-reaaona why they are not collecting date: 1> thia apeciic population ia not large enough to encourage intrt in a ull-acale atudyJ 2> there are barrier to data collection, auch alack 0 ace to hoepitel record: 3> th way data are currently indexed doe not provide or th collection end categorizing 0 data on VAI in particular. 13

PAGE 78

.. ....,_..., .,,._.111, ,.,, n st a tit wen 111M tshb M~._..9'ilht1D'l>rt,.... .. .,... akllttt..._..,.....,.....,._ ............ ....,.~ ......... .. .,. .. ...,.....,.....,.,._,_-.. ...... .. ___ .... ....... ..... -_ -- ( ( 000275 Contrct. 533-4935.0 Aa ia vident in th next aaction daling with th regional inatitutiona. hoapital are aoat likely to have the aoat coaplt in~oraat.ioa about t.hia patient population. I a link between patient rec:orda in th hoepital and th dt collection depert.aanta in the national inatitutiona could b tbliabed. t.hen we could begin to have clearer .. nae 0 thia population nationally. t.he inancial and health burden on the VAI patient and hia/her aaily and t.h aoral and ethical queationa to be dealt with in aarvin9 th.ia population. Hopeully t.hia greater underatandin9 will ld to aolut.iona to th probl 0 th coat and t.ype 0 delivary 0 health aervic to thia group. 14

PAGE 79

( ( Cont.rc:t. 533-4935.0 TAILI 3. unOUL DATA IIIVIIITOR' IATIGIIAL OIGAIIZATIOIIS IV lp(9EIIP1i AEIIP&a\&MI ..,,,,,. Ba Profil Iatani a. .. data Otber Or9aniaatJ.ona Data VAia >65! A9YSrl ctn l11PSA1\1w1 Aaerican Acadr of Fuilr PbJaician 8/14 lo ANrican aaaociation of CS. Part I.: latioaal Data Inventory. URT lleepirat.ory Therapiata lurftf of Ventilator Aaaiatecl Indiiduela: ANriCU Coll .. of ma .. t. Pbficiena Caaperiaoa d 1983 and 1989 Suneya> 8/14 lo Glaurock But.er Travenol Linde Ho Diviaion 00027G ANrican lledical 8/20 &aaoc:iatiaa lo National Center for HNltb Statiatica AdT Aaericu lur-' 8/14 Aaaociat.ian. Inc. Aaerican Occupational 8/15 Therapy Aaaociat.ion Allerican Pbraical 8/21 Tberapr aeaoc1at1 llo lo lo Critical Care Society 8/14 lo lat.tonal lutitutea d 8/14 ... ltb lo Vint.int lurw Aaaoc:. 8/23 .. AU Aaaociatiaa. he:. 8/22 ANriCM c.ac.r Societr 9/9 Allerican Lunt Aaaoa. 8/22 lo. lo lo .... '\ \ 15 Critical Care lurain9 beric:an Aaaoc. of luroac:ience lurHa AART Univeraity d I England. Guiatrica. Cardio-Pulaonarr Dept. lational Acadr of Sciencea Sell-help p-oup at It. Sinai Boapital ,,

PAGE 80

1~~;~ .l(~~~~.;_;.:.,,.,.;_,._M-., 1111 I .la ..;.. .... _.. .. ,. I ..rvww,,.,...~wWw~,n.w-..wwwUwWwwwu .. ,...._.,.~wllMlwW..rwiw .,.........._,........,. ............... ...., ................ ..., __ --........ . '."' ,, ( ( Colltraat 111-4911.0 TAIILI 3. laten,iw Date on Dag Vila >651 11eu .. 1 FOUlldat.i 9/t 11o fwLaatT.,. ... lU-c:.re Polio Iaf ... uan C..ts 8/23 llo Reepicar 8/23 lo Orppigt.iopf MfliN it.la Ml tld,rlJ Aclainiatratton on A9in9 9/9 lo Aaericu A9i119 AUOC. 8/14 lo Aaertcen Aaaociation 9/9 lo or Iatenuational AtiDI Aawican Aaaociati0.t of 9/9 lo Hoau for tbe A9i119 Aaerican Federation for 8/22 llo Aging RUMrcb Aaericen Geriat.rica Society Aaericen Lon9eit7 Aaaociation 8/22 lo 8/14 lo Federal Council on AtiDt 9/9 lo Li~ecare. Inc. lat.ional Ac:eclJ d Science lat.ioaal Geriat.rica Society 8/28 9/6 8/14 National Council on tb 9/9 ,,1., Rababilit.ation 8/20 ID9in-in9 Progru 16 .. .. lo lo lo Other Or9uiutioaa lo Mli-belp poup or ot.ber p-oupa in I.Y. bericar latioaal Heart Auoc. Ill National Heart & Lun9 tilator aenufec:turva Aaerican College of Pbyaiciua VA Foundation for Long Tera Care lational Inatitute on Aging Gerontological Societ7 Office d A9in9 ,,

PAGE 81

-~.-~~f,~t>IN111I -*hllllll Wit IAIIIDINl.....,....,......,_._,,,~ ........ ~--__,,h _,.,.,,wv~w.,.ww....a1-.utJ.vw.. .......... -,--,w_.,.._.~_.,...,. ____ .,,_, ___ ., ..ai .. ........,_ ..,....,......,... __ .._.....,.~ ..... -. _.__ .;._ .... ( .. (_ : ...... ,. Contract. 533-4939.0 00027_8 TABLE 3. Interi Data on Other Organization Date VAia >651 ArMPAat;Aa '"''" w&t;h ""'" an Ant;A\u\&9R1 ANricaa Coll-of 1/15 lo 1 .. 1t11 Care Adainiat.retora Coaaiaaion on 9/3 .. Proi'-ionel Hoapital Act.iviti .. HCFA 8/28 Y .. Illinoia AAGC. of 8/21 lo Rehabilitation laciliti Joint Coaaiaa1on on 8/19 lo Accreditat.ion o Hoapitala ltionl Center for 8/23 a .. 1tb Senicas Reaeueh ltionel Center for a .. 1tb Stetiatic:a 8/15 lo lo Vet.arena Adainiatration/22 lo Veteran Adainiatration 9/16 No Weahington. D.c. ffoae C,r 411991at1gp1 Aaerican Continuitr of 8/28 lo Care Aaerican Federation of 9/9 lo Roae Hltb Agenciu Illinoia Continu1t, of 8/28 lo Care Organization Rational Aaaociation for Hoa Can 9/9 National Foundation 9/9 for Boapic:a and Roa Care lo lo ..... ,~. \ 17 ueric:aa 1 .. 1th Cer Aaaociation Aaericu Aaeociation of Hoau for the Aging Nuber Organization HCFA 7F

PAGE 82

~~~:~.:nr-:.:.~----..: ... .a .a ... ... h ,-).,.,..,,_., ---....... -.. -~llitW_..,_.,_, ___ .,__,_....,~VWV~,l~'IJ._,V'~~.......,wa.._.,""~W ....... ......--.._...-~WM ..... M ....... _...,__, .. ...,......., .. __ ..,.. __ ._ ... .,. ... ( ( -(. cantnot saa-4ns.o 00027~ TABLE 3. Inteniew Data IN.., trfdl te:r1at;1gp llaauf ec:t.urera ad Suppli: DIE dora Gleaarock Heme Care 1/29 Trewenol 1/22 Foater leclical 1/23 1991 ''" ctn 2EnA41E ...... 1/23 ANricn atme,'Boa 8/23 Car Hoa.C.re Aaeociatu. 1/20 LTD. UpJolua 8/23 Quelit.1 Care 1/23 [&PIPS&tl ArllPiUtiopf Dapart.Hat. of 1 .. 1t.b 1/28 ad luau s.rv1cea. ec:ra INl t.b Inauruce 8/22 Aaaoctt.1an o6 Aaerica JINlt.b Inauruc:e Council o1 Aaerice 1/28 Data OD V&Ia >65! 18 lo .. .. .. ,_ lo lo lo lo lo ', \ \ Qt.her Orguizatioaa ibbef ledical .... Oak Foreat Hoapital Jloaec:ere Aaaociat.ea Foat.er Trevenol AeNCI Goldvet.er Hoapital luraing Agenc:i D& Vendor Lifecere Acceu Living URT at.udy St..lvy'a, lilw.uk Raacbo Loa Aaigoa St.ud7,, 1973-79 Loa Lind llc,ae Care Cleveland Clinic Office aclainiatretora, lleclicare and ledicaid

PAGE 83

, S. ...... hh" ,..r,911"5h ...... h ............ hftlihh.Mhhh) IM~ klll ...,.. ..,~ "W~,hi.2w hr h ...,.,te1'J~"-h>-.-.._.11,J_'t-_h_ .... .. ______ ...., ___________ ,............,___,_..,. -Contrec:t. 533-4935.0 TABLE 3. Interview Data on Other Organizetiona Date VAia >65? Illinoia Departaent 8/21 llo Depu-t.aent on A9i119 Public Health of ltelaabilit.et.iGD SerYicwa Dapart.wt. m -1th Planning Illinoia Departaent m 8/28 lo ANricve Public Aid ------------------------------------------ Aclclitionl inorat1on available. Citation follow. be[icg AsifdMr of ru11, Pbya1c1ana Qu .. tion 2: lind o illfanationT If tbeJ llacl aore u... they could auney t.be at.ate bf atete faaily phyaicien network to tabliab bow aanr ""tilat.or uaiated inclividul there ere 6S and o,,er. be[icy 1141911 AlfOCiftiop au .. t1on 2: liDd d iDfonationT Do not have any patient. date. Vi9itip9 lurffl 4119Cift.iop au .. tion 6 & 7: lave 2 V&Ia>65: 1. DiJI08ia: aJPD, cudiac: and Bypert.enaion, COPD VLOS: none, t boa VIIRS: 24 EVLOS: 24 Ppent aourcea: Unknovn 2. Die9noaia: ALS, Hypert.enaion, ALS VLOS: none, at boa VIRS: 24 EVLOS: 24 ,.,....t. ac,urcu: ummowa Clut.ion e: lla3or iuuea in caring for an elclarlf individual on prolonged aec:hanicel venUlationt 1. Tranaportat.ioa 2 ..., s. lelp t boa 19 fo

PAGE 84

....,._~ _,_,._.;~~'-'~--.,.~--~--w..t ............ ~.w,w~~_,.....,_,_\_.:....;_...., _________ ..,_. _._........,_.....,.. ~;.;~-, .............. uw~-... :._;-;:;_...,;= ....... ~:-.-;..:.., ..,.---..,........., .,.,_ .. ___ .__,.-.; .. __ \ ( rr .. '-.. : .. / .. ..... ,~ ::~.t: .--.. Contract. S33.0 000281 TABLE 3. Beaten Gueat.iaa a: llaJs iaw in caring for a elderly individual on prolonged aecbuical YeDUlt1oa1 1. ICFA' guiclelinea that allow elderly to not. be r-ponail,1 for~ of co-iaaur.ace. 2. Fiaacial burdea elderly mt. w becaUM t.bey'r booted _out. of hoapit.ala. L&#FVI, Ipc. Gueat.iou 2 & 3: Reqairta to cmt.ain data froa :f11 .. 1 Write letter end requeat. idoraat.ion Would take 2-3 weeka. Queetiona S & 6: en. ideati:fied lSOO VAia rangillg in age froa 6 aoat.ha to 97 yura. Gut.ion a: llaJor iaue in caring :for u elderly indiYidual on prolonged aecbanicel YeDUltion! CoacerD of t.b elderlf t.lult t.bey cannot. get. :funding :for care in tbe boae. ht.19111 &sfdur of Sctus,a Tbe Puel on St.atiat.ica_for en Aging Population Gueat.ion 2: The following aourc:ea HJ. prOYicle relevant inioraatJ.oa. TIie inventory of data ta ia current.lr beint indend. lenaard Golclat.ein, Ph.D. aearcbed through tb .. to --=-rtain relevant aourcaa. llat.ional Sunr fd tile Aged 1975. Supl waa tot.al U.S. noainat.it.utional popult.ion age 65 ucl ewer. IDCludu c1egr .. of healt.h and uae of bltb W'YiCN. Publicat.ioa: Et.Ml Sbana, llati9Ptl Sun, qf "9 "" 197S. DBS Pub llo. 83-20425 1983. Oat.a tape: llet.ional Arcbie o Collput.er1zei Data on Aginf, Int~veraity Coaaartiua for Political and Social lleaearcb, Ann Arbor. : Tit.le: lat.ional Sunef of Long-ten Cerltional Suney of Caregier Sponeor: Aut.. Secret.er, for Planning and Evluet.ion ud Hlt.h Care Financing Adainiatrat.ian ProJect. Direct.or: Paul D. s.,-r. Econoaiat.. Diiaion o Long Tva Care Polic,. Qf:fica of Social Sanicea Policy, ASPE/SSP DIBS D.C Purpou: To prowicle inforut.ion on the noninatit.ut.ionl popult.ioa oYer 6S naaEling uaiatuc:e wit.b daily living and their c:aregivera. Deaign: llat.ioul -pl of population 65 and o..-. acreened for loag-tera depmdaac:,. Secoad wa.e currently Ullderway. Inteniw vit.b about 2,000 unpaid volunt.u-y caregiYVa vbo provide aaaiatance to the depm,dat elderly wbo .,_.. interviewed. Yau of Dat. Collect.ion: 1982 and 1984 UnpubliaW data to be eilable Su-.r~ 1985 Con~: Paul D. Gayer <202> 245-6613 ........ \ \ \ 20 fl

PAGE 85

( ( t 1,\ .......... -' ; It,. ........ to: .. ,.,, ... : .. h > ,, It lo "t ., ,, U ........ .. .. .. ...... '" ... ' ...... ,. .... .. ... ...... ..... -............. Contract 533-4935.0 TABLE 3. Sponaor: Bureau o Cenaua, Depertaent of Couerce 00028:.! ProJect Director: Roger A. Herriot, Chief, Population Diviaion, Bureau of Cenaua Purpo .. : H data on chronic liaitation Contact: Cuat.oaer Servic .. Data Uaera Service Diviaion, Bureau of Cenaua (301> 763-4100 Title: Durhaa Old Ag Reaourc .. and Service Coaaunity Survey Sponaor: Duke Univeraity, Center or th ~tudy of Aging and Huaan Developaent Year of Data Collection: 1972-73 with follow-up in 1974-75 Contact: Linda K. George, Ph.D., Director, Data Archive for Aging Adult Developaent Box 3003 Duke Univeraity Nedical Center Durbaa, N.C. 27710 (919) 684-3204 Title: The lational Health Care Expendituru Survey, 1977-78 Sponeor: National Center for Health Service ReHarch and Health Car Technology A_ ... ent, and letionel Center for Health Statiatica ProJect Director: Daniel G. Walden, Ph.D., Senior Re .. arch Manager Diviaion o Intraaural Re .. ~ch, NCHSR 350 Park Building, S600 Fiahera Lane Rockville, 11D 20857 PurpoH: To provide a coaprehenaive atatiatical picture of how health aervicea are uaed end paid for in U.S. Year of Data Collection: Six round in 1977-78. Plan another in 1987. Tepea are available. Contact.: Daniel Welden, <301> 443-4836 Title: lational Health Interview Survey Sponaor: National Center for Health Statiatica Pro3ec:t. Director: Stawart C. Rice, Jr., Chia, Survey Planning end Developamt. Branch, D1viaion of H-lth Interview Statiatica,'ICHS 3700 Eaat-Weet Higbwey, Hyattaville, ND PurpoH: To prQYide date on the incidence of acute condition, liaitationa at activity hoapitaliution, diubility daya pravalenc 0 .. 1ected chronic condition Deaign: A continuing nationwide hou .. hold interview aurvey. Publication: Current utiaat .. Contact: Robert Fucbaberg (301) 436-7084 21

PAGE 86

( ( Contrct 533-4935.0 TABLE 3. Title: Second N~tional H .. lth end Nutrition Exaainetion Survey Spoaaor: Nat.ion~l Cent.er or Health St.at.it.ica ProJect Director: Roberts. lurphy, Director, Diviaion of Heelth lxeainat.ion St.atiatica Center Building, Rooa 2-sa IICHS 3700 Eaat.-w..t. Highway Hyettavill, ID 20782 Contact: Patricia A. Vaive <301>436-7080 Title: 1980 National Nedical Car Utilization end Expenditure Survey Sponaor: National Center or Health Stetitic Health Care Finance Adain. Update Study: Planned for 1987 Publicetiona: lationel ledical Cer Utilization and ExpenditureaSurvey Data Report Seri Public tepee NTIS, Interuniveraity Conaortiua Cont.act: Robert A. Wright, ProJect. Diractor, Chief, Utilization Expenditure Statiatica Diviaion of Health Interview Stetiatica, ICHS (301> 436-7100 Title: Survey of Aging Veteran Sponaor: Vetuana Adainiatration ProJect Diractor: Roberts. Feitz, Statiaticien, Reapiratory Diviaion VA, 810 Veraont Ave. PurpoH: Survey yield ba .. lin data on hlth atatua, on noninatitutional veteran, S4 and over. Contact: Feit.2 (202) 389-30S2 Rehabilitation Enginnring Progrea Queation 8: NaJor i .. u in caring for an elderly individual on prolonged aechanical ventilation? 1. 2. 3. 4. s. 6. 7. a. Concern for tho .. who abould be on, can ba, but aren't. Prolonging Ufa. Will individual be able to afford it? If not, will governaent be .. naitive to right to life? Don't forget people want to live. Don't think people have choicu-only hoapital and nuraing ho Iaproper education or faail1 end caregiver. Haven't inveatiget~ co~gregete bouaing. Inaurence coapani heve not. inv .. tigeted 1 ... expenaiv elternetivea. Approaching ill people and eaking thu t.o aake deciaiona. 22

PAGE 87

\~ --.~:~.:: ... '' ..... -t.~ .-:-:.;-..-;-:-.~~.:.;!,: ::.:,-.:'"::. '' ... -: .-; -:~ ... .---.~ "":'.""'\.., .. .. '. .: ..... ....... ~ .~. Contrect 533-4935.0 TABLE 3. Coaa1y1on on Pro(1y1ona1 Hoap1ta1 Act1v1t111 Queation 2: lind of inforaation1 TbeJ do b dia9noai and aourc:e of pyaent inforaation that they can coapil froa tbe NecU.cl Record Aba,tract of 20 hoapi tala. They could identify the range of patient 65 and older with cutain dignoaia in _particular boapitale. Contact could then be d with the hoapital to obtain VLOS, VHRS, and EVLOS. Ktltb Ctr fin9ncin9 Adainiat.ration, Bureau of Data lanasnt and strategy Qu .. tion 2: Kind of inioraation? They have data on patient who are recipient.a of Nedicare in procedure code file. Th fil include netionvide dat, but they can acc ... perticuler localitiea. A 5 beneficiary ~ile incluclu dete on 5 of the population, duogrephic characteriatica, die9noaia, ~vicea received and the coat of apec:J.fic aervicea end equipaent. ( Nat1ona1 c,otr for Healt.h stat1at1ca ( au .. tion 2: Kind of 1nforaation1 They do have diagnoai inforaation, but not apecific to ventilator aiated individual 65 end older. Veteran Adainiatretion Qu .. tiona S & 6: Survey of April 1984, 244 patient.a >65 in 171 hoapitale. loatly n. Queetion a: laJor 1-u in caring for an elderly individual on prolonged aechanical ventilaUon? 1. Funding 2. Relief or the wife while h' out can be difficult. 23 ff

PAGE 88

Contract. 533.0 TABLE 3. t111no11 eont1nu1tv of ctr Prs10111tion QuNtion a: 0 0 of}{)~ ~oil Ke3or iuuea in carin9 or en elderly individual on prolonged aec:henical ventilation1 1. Faaily aupport 2. Financial 3 Resourcu in coaaunity 4. Rural .. ttin9 difficult for reaourc Glrock le ctr Queation 2 & 4: Kind of imoraetion, nuaber of VAI 65 and over and aourc of payaent? lloat of their patienta er <6S. They would gueu that th nuaber of their patient 65 and older would be no aore tban 1.0. Th coat or equipaent rang froa 9600 to 20 ia paid for by the patient, and 80 by Medicare. ( Trav1nol ( Queationa 2-7: Kind of inforaation? Received a confidential auaaary of inforaation regarding their ventilator petienta. foatr ledical Queationa 3 & 4: Requiraaanta to obtain theae data? Authorization-'. Would receive inforaetion th day. Queation 5: Nuaber of VAia identified? 40X Queation 6: Nwaber of VAI 65 and older? Queation 7: Dia9noaia: SO with ALS; SO with failure of diaphragaetic pacera. Payaent aourcea: ledicaid and Private inaurance. 24

PAGE 89

''hi .,t 'II,,.,.-_,-.,, ... ._ --t .. .,,.1, ''' ' 1 \I.,,,., ... ,, 11 .t'~ .,, ......... ,...,.,,0111 h ,t1lol ~lhllh .. .. I .. ,._, I\ .... Ul .. lN N .. -N .... I ....... ~,. ..... --......, ......................... _.._,, ... _. __ .. ,, .. ( ( .. .t '\/',,: ,,. Contract 533-4935.0 0002f6 TABLE 3. 4d Queation 7: Inf'o: Have one patient. Call once a aontb, cbec:Jca ventilator and auppli oxygen. Can't provide diagnoaia, daya and hour on ventilator or payaent aource inforaat.ion. Queat.ion a: NaJor i .. u in caring for an elderly individual on prolonged aec:hanical ventilation! 1. Who will care for the individual? 2. Coat. Aaericin Abb9y Hoa Car Queation 5 & 6: Nuaber of VAia: 100 Nuaber that are 65 end older: The aa3ority of tbe total nuaber of VAia Queation 3 & 4: Requirea.,ita to obtain data: Approval froa corporate vice-preaident. Would take a couple of weeka. Queation 7: Age: Th aaJority of patient.a are 65 or older. Soae diagnoaea: ALS, COPD, Cerebral Palay, Multiple Scleroaia. Unit.: Ho VLOS: So every day VHRS: Not aura EVLOS: Not expected off Payaent aourcea: Nedicare. ledicaid, Private Inauranca, aoae Public Aid Qu .. tion a: Na3or iaauee in caring for an elderly individual on prolonged aechanical ventilation? 1. Faily/C01111unity ~upport 2. Support aervic 3. Pay~ant-could proc-be uootbed out? 4. Service and auppli uoothad out? 5. Lung Aaaociation ahould do follow up proJect. F6

PAGE 90

( ( '-Contract 533-4935.0 000287 TABLE 3. Hoa.car, A1199i1t.e1, LTD. Qu .. tion a: la3or iuu .. in caring for en elderly individual on prolonged aechanicel vt.11at1on1 1. Toh anotber pereon to uit.-dUicult.. 2. Funding-difficult. Aleo why are they boaeT Look at reeaona. Are they boa becu .. they want to be or are they puahed out? 3. Doean#t ... adult.a out witb the kind o aupport t.hay#d been able to obtaiia for children. 4. Quality of life. S. Soae people ahould not be kept alive and they are. pu,11ty ear, Queation 3: Requiruenta to obtain date: Cont.act. t.be ofice and have thu conduct. a aurvey of 170 offices. Queat.ion 8:. Ne3or 1-uu in caring for an elderly individual on prolonged aechanical ventUation1 1. Are we providing quality of life for the patient? 2. Ia th ho car coat end care effective? We ... ho csr as aoat coat affec:t.ive. 3. Acceptability of th ho 4. Et.bical iaaue--i thi beat for patient and oily: Health Inayranc Aaaociation of Ar1c1 Queation 2: Kind of inforaetion1 Int.er of inaurance reiabur ... ent, they have inforaation fro HCFA and lledicare. Illinoia Departpt of Public Aid Qu .. t.ion 8: le3or iuuu in caring for an elderly individual on prolonged aechanical vent.1 lation 1 Clearer definition of th population to deal with negotiated rate in nursing ho They#r backed up in hoapitela. tl

PAGE 91

> .. -._. ---.. ....... --.-.. ~:-~-~o.i: .. .... ............... ....... ~-;,;..i .. ~._.-;;..;,.-..-;, ...... !,;:4,r~.'":' .......... ~-----"" .... i:.:.::.:;.~ "':..",.,":",.-.~~,;:-........ ~..\---................. r ...... .. \.' ..... -. ( .. Contract 533-4935.0 000288 PART II RE~IONAL INSTITUTIONS CASE STUDIES Introduction Ten key inatitutiona reprnting aeven region in th United Stat plua on inatitution in Canada were identified aa leader in caring or ventilator patient in their raapactive areaa. Data were collected fro th inatitutiona on the age diatribution-diagno-nuaber 0 daya and nuaber 0 hour par day on the ventilator, the expect.ad length of atay on the ventilator, the aourc of peyaent-average coat and the definition of prolonged aechanical aaaiatanc and trend in the nuabara-0 VAia they rvad. The data provided by th organization paraita an opportunity to exaaina regional variation in the nuabera and kinda 0 VAI treated in dierant part.a of t.h country and thereby provide another "look" at thia population roa the perspective 0 aoae o~ the aaJor rgional canter actually aerving th Methodology Dr. Allen Goldberg, with input roa the 0fice 0 Technology Aaaent, provided CHAS the na of inatitutiona and individual who were extenaively involved in the treataent 0 ventilator aaaiated individual. The liat of th inatitution Thi aection waa principally prepared by Suaen N. Dunaire, N.A., arch ProJact Aaaiatant. The author grateully acknowledge the inoraation provided by participating inatitutiona 27

PAGE 92

( ..... ........ ,.~ --.""""""' ....... ,~'-1a'--W'-'M"~'-W"llJ"'Q ........... ,.,,11,~ ..... .....,,u,,w .... w"~~,,r,,,;ww,,w....,.;w"" ... '',.,_"'"''..,M.,....,.,~ ..,.....,, .... ...__,..__. .. ~,.. ........................ -, .... .... ,_ .. ...... Contract 533-4935.0 00028!) ia provided in Appendix E. ~" Jnitial tele~hone call .we~ d to ch inatitution to elicit participation in th atudy. Th contact peraon at ~ch ait waa aaked if he/ahe collected data or would be able to collect data on ventilator eaaiated individual age 6S and over. I the reapondent anawered yea, a rgional data inventory wea aent to th to coaplete. I the reapondent answered no, no inventory waa aent. 0 th eleven inatitutiona contacted, tn data inventoriea were sent , and all 0 th were coapleted and returned to CHAS. Follow-up phone calla were aade to the inatitutiona five deya after the inventories were aailed to conir they were received, end to anawer any queationa regarding the inventory. Periodic phone calla were d until the coapleted inventories were received. Upon receipt 0 the inventory, unclear data were clar1iec in phone cell to th key inoraant. All patient data are included or tho individual 65 and over who required aechanical ventilation at leaat our hours per day over at leaat a two week ti period. Data roa three patient who were on a ventilator l than 14 daya. on or 10 day and two or 13 daya were included bcauaa they were expected to reaein on the vntilator or at leaat our ore daya, which would qualiy th a requiring prolonged chanicai ventilation. 28 ff

PAGE 93

( Contrct S33-493S.O 000230 Two key inoraent r~"tributed additionel i~fo~~tion roa atudiea they have conducted . One othr inforaant ntioned data preaently being tabulated on VAI in hi inatitution, which aay be available in a few aontha. Finding Table 4 liata the 46 patient roa th aeven cenaua region fro which data were received. Their ege. diagnoaea, unit, nuaber 0 day on the ventilator , nuaber 0 houra par day on the ventilator , expected length 0 ti on the ventilator and payaent aourc inoraetion are included. Th data are auaaarized in Table 3. Age and Diegnoaia Table 5 auaaariz th data in T.abl 4. In Tabl 5. eight 0 the ten reporting inatitutiona liated VAia 63 and older, with a total nuaber 0 46 patienta. Th VAI ranged in age roa 65 84, with 72 aa the n age. Diagno are liated according to the priaary, and aecondary diagno and th diagnoaia lading to the patient being ventilator aaaiated. Th priaary dia9noaea are cluatered around neurological/neuroauacular <37.0~> and reapiretory <4S.7-> diagno Reapiratory diagno coapriae clo to hal <48.6-> 0 the aecondary diagno The category 'other', ha the aecond greateat percentage 0 diegno at 31.4-. Th diagno aoat coaaonly leading to the individual being ventilator aaaiated are reapiratory, at 48.7-. VLOS, VHRS, and EVLOS A or ti apent on th ventilator. over hal 0 the patient (69.4%) were on th ventilator for aix aontha or 1 29

PAGE 94

( l. '' 1 '' .... ...... ................. 4 ............................ ............... ww .. ............ w,, ........ ,,~,w ... '"-'"'w, .. .... .. ,'-,o' .. .. ..... ................. ..... w,, .............. ... ....... w, ......... .., .......... _,.,. ..................... ., 0 ,. 0 Contract 533-4935.0 0002~1 Only 27.8 0 th pnnta were or th-v~~tl~~nr lonaer than year. Over ninety-five percent (95.3%> were on the ventilator or 12 hour or aore. a day. with 76.7 0 the total nuaber 0 the patient on the ventilator for 24 houra. Th anawera to the expected additional ti the patient would need to be on a ventilator varied. but th greateat percentage were in the categori 0 liatiae and until death, totaling 80.5-. Coat Th payaent aourca inoration reveal that Medicare and Medicaid cover th greateat percentage 0 the coat 0 a VAI' care. Thirty two patient out 0 40 had 76 100X 0 the coat covered by Medicare or Medicaid. Two patient' private inaurance covered 76 100-0 the coat, and three patient had other aourcea which paid 76 -100-. Th raat 0 the patient had a cobination of payaent aourcaa. Other Iaauea Table 6 provide a auary 0 the reapon to queationa 5 through 9 on the data inventory< Appendix F>. Coat. There ia a wid~ rang < -2286> in the approxiaat coat billed par day per VAI in a particular ayat Th variance in thia range could be attributed to th varying coat aaaigned to the dierent car unit within an inatitution and aero varioua inatitutiona. The an coat reported waa .938.13. VAia; Iner, decreaae or atay the aaae? In th peat aonth. 90.0 0 the reapondanta rported that the nubr of VAia 6S and over have atayed the Pr03ecting into the next aix ontha. 30.0 0 th reaponding inatitutiona expected to aea an 30

PAGE 95

.. "'-~ '' .................... .... ,. .t'll ...................... -"---~ .................. '11. .... ""-' ............................... { ( Contract 533-4935.0 0002f>2 incra in +h ~ubr of VAta. Tb AXplanation cited for th nuabr 0 VAia increaaing can be categoriz9d a apecific to the type of inatitution and the preaence of a unit or VAI at that inatitution. Faciliti with apecializad unite or VAia. auch an acadaic inatitution. expect to an incra becau other inatitutiona recognize their expe:rti In addition. ore patint are bing tranaferred to their inatitution becau 0 th DRG reiaburaeaent chani The act that they hav~ appropriate chronic care facilities and that other acute care inatitutiona lack aucient funding are the two aain reaaona certain type 0 inatitutiona expect an incr in the nuaber of ventilator a .. iated patient. One reaponding inatitution expected to a deer in the nuaber 0 VAI in the next aix aontha. Th explanation given waa that aore patient, particularly the elderly with terainal di, are being treated aa 'No code'. Patient and/or their faaili er deciding that they ahould not be placed on a ventilator. Over half <60.0> of the reaponding inatitutiona expected the nuabera of VAI to atay the in th next aix aontha. The explanation were baaed aainly on their experience to date. Their nuaber 0 VAI age 6S and over have reaained approxiaately the over the peat few yeara. and they do not expect any draaatic incre in th next ew aontha. Opinion; Why plac a patint on chanical v9ntilation other than for life aaying purpoa9a? All of the nine inatitutiona reaponding agreed that one 0 the aain reaaona for placing en elderly patient on a ventilator waa to enable the patient to 31

PAGE 96

........ '-................ \--.. ,-. ................ ...... ,"'""h"' .. ~---.................. .....,.._,......., ....... .. J ,i ...................... .... ,""~' ......... -,. ___ ,.,_. .... ,.,_,.,. -_.., .... ... .............. ,., .......................... ............. .. ........ ( ( 000293 Contrct 533-4935.0 continu pT'oductive 1 .. Twt"-+1'lird <66. 7,0 0 the reapondenta agreed that a aain reaaon ia that th patient baa available aupport peraona to care or hia/her. Over hal a9r .. d that. on 0 th aain reaaona waa that the patient baa appropriate coverage or reiabura .. ant. The vaat aaJority <88.9X> 0 t.he reapondenta agreed that on 0 the aain actor conaidered ia that the patient. baa a reaaonable level 0 ntal coapetence. A recurring th in th 'other' reaponaea ia placing an elderly patient. on the ventilator to revr the 'priaary diaeaaa proc' to 'overco apparent woraening 0 reapiratory failure not othe~wiae reveraible'. Sevaral reapondenta diacuaa the deciaion-aking proce .. involved in placing an elderly peraon on a ventilator. Careful conaideration 0 the above aentioned actor 1a --ntial by th faaily and the patient. 1 h or aha ia coapetent. Obtaining inoraed conaent roa the patient ia repeatedly aentioned aa a qualification beore th patient ia vent.ilated. Appropriate definition of 11prolonged ventilator dependencv". Reapon to thia queation diverged fro the definition uaed in tb data inventory in tr 0 th ti ra The anawera ranged roa patient who ia on a ventilator longer than 48 houra or a portion or all 0 t.he day_ to a patient who ia on a ventilator longer than thr aontha. One inatitution defined a YAI a patient who ia not abla to b weaned ro the ventilator and/or a patient who require ventilation to prevent reapiratory failure. 32

PAGE 97

...... ..... .,.., ... ....... '-..... 1-1.111 ... w, "'~ .................. ~'-'-"-~~ ... ~~a.""&~tt.kl,t.1,.11.-..,~ ............ ..,.._,.__....,__,.,.- ,. ( Contract 533-4935.0 0002:)~ Copcluaiona Data roa ten inatitutiona in aeven region aero the country do not repreaent th total population 0 VAI in the U.S. Th data do. however. provide inaighta into the variability aero .. Jor inatitutiona in dierent part 0 th country of the actual VAI patient they aerve. and the iaauea involved in th care 0 th patienta. Inatitutiona with apecial ventilator unit are witneaaing an incra in the nuaber 0 patienta. in part explained by th exiatonce 0 auch a unit, and in part explained by the DRG reiabureent ayat .. in which coaaunity hoapital tranaer th kinda 0 patient out ainc they cannot aord .. to keep th peat tbe aaxially-reiaburaed length 0 atay rate. Other inatitutiona record the VAI population reaaining the Even tbough the elderly population i growing, the VAI population 65 and over aay not be growing becauae 0 patient. eaily or aedical teaa deciaiona not to ventilate the patient. The in purpo or ventilating an elderly patient are 1> lie-aaving, 2> to enable the patient to con~inue a productive 11, 3> the patient ha a reasonable level 0 ntal coapetence. 4> patient haa available aupport peraona to c.ir .-.~r hia./her, S> patient haa appropriate coverage or reiaburaeaent, and 6> to reverae the priaary diaeaae proceaa. In order to collect accurate coat data. to arrive at a conaenaua on the definition 0 prolonged aechanical ventilation. and to identify the total nuaber of VAI in the entire country, repreaentative aaaple 0 ell inatitutiona providing care to VAI would be neceaaary. A data inventory aiailar to the on in 33

PAGE 98

Contrct S33-493S.O 0 0 0~95. th type 0 -inatitution and th kind 0 unit and rvicea provided or VAia. The coat and deinition data couid then be coapared and contrtd aaong like inatitutiona and unit and aggregate tiaat developed or the nation a whole. \ 34 .,.

PAGE 99

-~ ....... -.......... ., .. -............. .... ...... ........... .......... .. ., ... .41 ..., .. ~..,, ..., ................. ,~, ............ .., .............. _. ..................... _._,_.,._ .......... .... _,_,. ,_, ... .._ ,,. .......................... ( ( ( Con~rect 533-4935.0 TAILE 4. IEIICNL INSTITUTIN CASE STIIHES Data I"""9a1 ero,11, of Cun llprifd VAi & DIMtl8IS lltlT VI.OB HI &OS PAYMENT IDR& 000296 (days> (houri) llldic_.. Nldicaid Private Faily Other @ni9" lfF Na,:th r.,tr11 c tJ _1_66_1>Ri6 Fx_PRCU_13*_12. __ 7_ bJF1 Pwluis_ c>Ri6 Fx_ _2_83_1HU. ___ PIDJ_l97_24_Until dNth b)PMIIGllia_ cuu __ Insur11a (SPECIFY) 1 2 3 4 5 __ <,)tN_ (j)_ (I)_ (j)_ <>1 2 3 4 s __ fl)_ ,.,_ (1)1._ Cl)_,.,_ 3_61_11L\I. ___ PIEU_38_24_tatil dNth 1 2 3 4 5 tlll S.icn lalClnb-11 Hypcwm1til1tion c)Cl*al HypcwHlnion Ct>_ Cl>_ <,>_ oo_ ci,1_ _4_m_11nuan ..,.._PIDJ_&1_21_J1_ b>llapirncry F1ilurt c>&uillia ..,,.. 1 2 3 4 :s __ ,.,_ c,1_ ,.,_ uu_ ,.,_ _S_74 1UILS ___ PIICU_91_~_1Wil clllth 1 2 3 s __ b>PMuaani1_ cuu. __ ci,_ C1>1N_ ,.,_ ,i,_ c,o __ 6_67_1lPoUo ___ PlllJ_1468 __ 24_lMUl dllth 1 2 3 4 S_Patient_ b)On10pcrosi1 c>Polio __ lllaiOllt ,_ Enalllld (2) fl)_ ,.,_._ (j)_ c.,_ ,.,_e,_ _7_&6_1)all ______ 11 __ 14_Lifti l 2 3 4 5. __ blKypbolis_ c)CGID ,.,_14_ ,.,_._ ,.,_ ,.,_ ,., 1_72_1HDID .1. __ M_Uffli 1 2 3 4 s. __ b>AdncarciftGIII of thl net c)CIIID CS) _33_ (j) _67 (,> (I>_ ,., .. .. \ 3:5

PAGE 100

Contract S33-493S.0 000297 ( \'~ ASE DIAIIGIS IMIT V'~ w.:~ .V'.U.. PAY,IOOSCIJPCEF (cllyl) Ch"'1tr1) (dlys) Nldic:ant Nldic1id Priv1t1 Faily Othlr lftlVIID (SPECIFY> 9 77 1)alJD SI 12_Lifni l 2 J 4 5 --b)li1111id divarticulOlil c:)aN c,01_ Cl) -(j) C,) ,.,_ 11_79_a)CDID 2211_2-1_u,,u. l 2 3 4 5 IIHluscl1 NUting c:>CIIID ,.,_ Cl)lN_ (j) -(j) -(j) 11_66_1)Polt polio sys,drollt_U3_8_Liflti 1 2 3 4 5 blKypholcoliosi1 c:)aPD Cl)_ C.)_75_ (j)_25_ (j) -(j) ta-_a_Liftti 1 2 3 .4 5 ,,,1._ Cl) (1') (j) oo_ 13_71_a>alJD 174_2,_LiMia 1 2 3 4 5 ( b>flllllltrit ion c>aPD C,)_51_ C.) ci>_SI_ (j) ,.,_ 14_81_1)Kypbolcolioai1 27_24_Won thin l 2 3 4 5 11) .... iapDlld Plllaanil 2mnthl c> c.u_ ,., ,., (I) Cl) B1Pign1 Cwdf (1) 15_76_a>mD 1a,_1a~12_14_ 1 2 3 4 5JltJPH_ IIJPllllfti1_ c)Plllaani1_ C,) ,., C,) C,) C1'>1N_ 16_74_aJAartic 1a,_11_12_3_ 1 2 3 4 SJIUPH_ dillll:tion_ II) c.,_ (II -(j) (j) (1')111_ cJAartic: dilldiOft BnianLIRnlJ AtllMie CU 11_m_1>Aartic: NAl_,._ .. __ NAt_ 1 2 3 4 5 bJIDID. OHi_ c>cataandlDID ,.,_99_ ,., ,., _11_ C,) ,., l. 36

PAGE 101

~~118t1"11~~~-.Nwww~v .. \lWw\l.aWw~ ,. ilind iii t0l ftitbrlt1Mtr (tit t'tdlUt in.1~~Wrai.~W~~o~n1ltftt1 t tdNt M J HMMMMNM MM'7:,tHH.7 .. MJ','!1:1!7':1t1:,C.:H .. ... }*!': ._..,>.""' 00.1Mw..~ ... -..... ( ( '"' ',, .. .. ,;. > Contract ~33-4935.0 0002HS VAi ABE DIAlfllSIS lltJT YUJS VHIB EVUJS PAYIENT SUID (dlylJ ChonJ (days) Mldic1N Nldic1id Priv1t1 Fily Othlr INiona Em Ng,:th r,,,tnl m 11_m_1)Ptrki1110111_1aJ_21_24_4_ bl ___ c> lllpirato,y F1i111, 19_74_AJRtlpiratory_lQJ_18_24_Life distNII b) ___ c)llllpiratory diltrt11 21_m_1>Aartic. __ 1m_a_24_Lif ... ,. b) ___ cJlllpiNtcry f1ilvt 21_19_a>ARDS ___ JQJ_32_24_Ufa bl ___ c>ARDS __ 22_69_1>Conpstiw_1a, __ 11_24_7_ llari flilWII b) ___ c:Jllllpirltary fail1r1 u_n_a>Po1yn11ropuhy1a,_11 __ 12_s_ b) llllpiratary f 1i11N c)Rapiratary f1i11n Rlaion: ltiddl StJEiS m lftllll'IIICI (SPECIFY> 1 2 3 4 '---(I) _I_ (I>_ (I) _I_ CS>_ ">1 2 3 4 s __ 00_1_ Cl)_ (j)_X_ (I)_ (I)_ 1 l 4 5 __ Cl>_I_ Cl>_ CJJ_I_ CS>_ ">1 2 l 4 5 __ ,.,_x_ ,,,_ ,.,_x_ m_ ,.,_ 1 2 3 4 s __ (jJ _I_ (jJ (j) _I_ Cl>_ ciJ 1 2 3 4 '--,,,_x_ ,.,_ ci,_1_ ci,_ on_ 24_67_a>maD_Eatah_De2 ____ 24_Ufatillt l 2 3 4 s __ b>Dlildhoad Altlllll c>Cr PlllaDMl ">-,.,_ ... ,.,_ ,.,_ ,.,_ 2S_71_1Jl/p aR __ D22.. _____ 24_lifni 1 2 3 4 s __ .. ,~ ..... ii c>._lylldraal ,.,_ ,.,_ ... ,.,_ ,.,_ ,.,_ 26_66 1)CDID ___ _____ 24_1ifati 1 2 3 4 s __ .. .. c> ___ ,.,_ (jJ_ffl_ ,.,_ ,.,_ ,.,_ ... \ 37

PAGE 102

Co~tract S33-4935.0 0 0 0 2 9 !) VAi AE CIA3ta!C V'~ EY'.Jl~ PAYMENT SIR: (dlys) (hours) (uys) MldiCIN tlldic1id Privat Fily Othll' lr1nm (SPECIFY> 27 _11_11CDJD ___ 022. ______ 24_liftti l 2 3 4 s __ la) lllf: .,,._.ii cl ___ (i)_ (i)_tH_ OD_ (j)_ ci>_ 28_83_11a111> ___ 1122. _____ 24_1iftti l 2 3 4 s __ b)lrcll:hiactuis c> ___ ,.,_ (j)_fff_ (i)_ ,.,_ ,.,_ 29_78_1Jlll11ltipl CVA_D22 ______ 24_liflti l 2 3 4 5 __ b>llp CPI cUlltlltatic lung dilHU ,.,_ ,.,_fff __ ,.,_ ">-">-ll_72_1ICDID Eaph_D22 _____ 2.4_11f1ti 1 2 3 4 5 __ b) 1/p lharacoplldy for TB el ___ ,.,_ C.)_fff_ ,.,_ ,.,_ ,.,_ 31_78_1t .... tid Lung_D22 ____ 2.4_Uftti 1 2 3 4 s __ b> Ille. Pnluaania cl ___ ,.,_ C,l_fff_ (S)_ ,.,_ ,.,_ l2_6S_11CDID ___ D22 ______ 24_liftti 1 2 3 4 s __ b)C:. pu1 .. 1, ct ___ ,.,_ ,.,_fff_ ,.,_ ,.,_ ,.,_ 33_12_11aD ___ PCU_43 __ 24_liflti 1 2 3 4 s __ b)C:. pulaonal1 cl ___ c.,_ ,.,_fff_ ,.,_ (JI_,.,_ J4_M_1JaR ___ PClJ_71 ____ 24_liflti 1 2 3 4 s __ b>Clrdianyopathy clltypoplrotainai ,.1_ (Jl_ffl_ (jl_ ,.,_ ,.,_ 35_74_11allD ___ PCU_34 __ 24_1iftti 1 2 3 4 s __ b) lllcurrlnt pMllmlil clCar pulan prolaplld initral valw (J)_ (.)_HI_ (j)_ (j)_ (S)_ ( 36_76_11111 ____ 1m_62 __ 24_iftdtfinit1 1 b>DF c>Pllmn Edlu 2 3 4 s __ (.)_ (J)_IH_ C,1_ (J)_ (j)_ 38

PAGE 103

Contract S33-493S.0 ''"-()r-n \, rij '-' t,j V"~ AS!: n:~! llf!! \1.0! YHRS EVlDS PAYBTSUID ( (d1ys) (houri) (dlys) NldiCIN lilldic1io Privm Fily Ottw Insurance (SPECIFY) !1_66_1UU AINll_1172_24_Until dNth 1 2 3 4 5 11,r.. cHU C,) (j)_fff ,., .. ,_ ,., 31_65_1)U lllhlb_8211_24_Until dNth 1 2 3 4 s b)Dlol1litui11i1 c>AlS ,., ,.,_lff m C,) ,., 39_69_1)Carvic11_1Nb_315 _24_Until de1th 1 2 3 4 5 disc hlmi1tion_ b)Antrior spinal cord syndNIIII ,., ,., _x_ m ,., ,., c)Clrvic1l ditc twrni1tiCJft 41_&6_1)"-S Alhu_2S5S_24_t.til dNtn 1 2 3 4 5 b)HTN c>ALS ,.,_ ,.,_lff uo ,., (I) 41_81_1ULS-O._Rlta.b_182S_24_Until clNth 1 2 3 .4 s ( bUW cUI.S ,.,_ ,.,_lff ,., C,) m ---~_69_1)F1tcio-_Rlnab_459_24_Until dNth 1 2 3 4 s bpula ,e b) ,.,_ Cl> ,., _x_ (I> (j) c)Fncio-Sc1pul1 MD 43_69_a>II.S lllhab_66_24_Until dNth 1 2 3 4 5 b)OlrGnic UTI c>ALS ,., _x_ ,., ,., ,., ,., 44_74_1)8uilli1n_lllhab_lll_1,_l&S 1 2 3 4 s llrNS,Nb'CIII bJHypolhyroidiu ,.,_ ,., _x_ ,., (10 ,., cJS.illian 8lrft Syndro111 lllian1 Pgific CU 45_1&_1,auuu1n ______ 1n ____ ?_ 1 2 3 4 5 __ ( ..,..Spd, .. .. ___ ,.,_ c1,_1_ c1,_ no_ ,.,_ cJSuil U111 llrN Bynd,._. 39

PAGE 104

. -'w11._ w-h1 .. 1,,...,,, .. ,1,,~,~., ,_,,,._.wUUWW ... ..., .................... ,~,,,...a,.,h,h.1 .. .. u .. .. 1.,. ................. w ..... .. .. ,.,, .......................... ,._ .................... ",. ........... ,. ,. ,, ,,,. ,,, ... .. ..... ,.,,, ,, Contract S33-493S.0 000301 VA~ AE DIAIJMJSIS UNIT VUII VHfl EVUJS PAYIENT SOUiEES (dlysJ (hours) CdlysJ ~iclN Nldicaid Priv1t1 Fily Ottw Insurance (SPECIFY> 46_69_1JIDID _____ 1125 ? l 2 3 4 s It) ___ r:JIDID __ (I)_ c1,_1_ (IJ_ m Cl> -___ 1) ___________ 1 2 3 4 5 bl ___ ,:) ___ (j) (IJ Cl> -(j) Cl> -___ ., ___________ 1 2 3 4 5 b) ___ cJ ___ CIJ c,o_ Cl>_ (SJ_ Cl> -___ ., ___________ 1 2 3 4 s II) ___ CIJ Cl>_ CIJ_ CS) CSJ ,:) ___ ( I Lin tllln WO Nllks 11 O..io lfllltb IIIAl'11a Pl 111 lllwfits hllstld1 billing Nldicaid ( 40

PAGE 105

.. ~w,,-.'-' ""'''-"''""'"''''\,:,. '"" .. ,,.~. ... ,,., .. ..,, ~. ,., ... ,.,.,,,,,,,._"IIIN'',.'"'""'...,"'w"'.;"""''-'"",.,,...,"'"'""~...,-,ww,,v,&w~w",,,....,,.,"'"'...,"'""''''""'.a..,,, .... ,,.,.,,..._,,,,. .,, ......... ",, ,. ,, ,, .. .. ,,, ,, .. ,. ....... ., .. .. ...... ......, ._J,,.,. ....................... -.. (_ Contract S33-493S.O TABLE 5. REGIONAL INSTITUTIONS CASE STUDIES Suaaary BP9D Rate Profile Bportina tnatitut1OO1 Total nuaber: 10 Total nuaber wit.h VAI 6S and older: 8 Y&I ftport.ed Total nuabr ag 6S and older: 46 Age range: 6S-84 Kean age: 72 Diegno Priaary Cardiac coap1ication Cie. CHF. Aortic aneuryaa> 11eurological/neuroaua~lar Reapiratory Other Cie. treuaa. G.I. ayatea, cancer> Total Secondary Cardiac coap1ication leurological/neuroauacular Cie. ALS. CVA. Polio> Reapiratory Cie. COPD. ARDS. pneuaonia> Other Total Leading to being ventilator aaaiated Cardiac coap1icationa Cie. CHF, Aortic aneuryaa> leurological/neuroauacular Cie. ALS, CVA. Polio> Reapiratory Other Tot.al 41 Total 6 17 21 2 46 6 1 17 11 3S 4 12 19 4 39 000302 Percent 13.0 ,c 37.0 45.7 4.3 _..., ___ 100.0 17.1 2.9 48.6 31.4 100.0 10.3 30.8 48.7 10.3 100.1 00

PAGE 106

.......... ~.;) ... ... : ........... ... ............. ... ,.~ ....... ,\it,-....., ... h'-. ....... -. ..... ........ 't,1 ....... ......... ;, 1 ....... o. ..... t ,., 0 0., ,........ .. .. ... .. -.............. -....... .. .. ( Contract. 533-4935.0 000:0:; 10 14 1 3 6 > TABLES. '~ont.inued> Reported I& on vent11ator Tot.al Tiae Range: 10-8200 daya -13 daya -30 deya 3 aont.h 6 aont.ha -12 aont.h 12 aontha Tot.al Percent. Nuaber (IS> ....... 3 ____ __ 8.3 fC __ 6__,_ _16.7 _12 __ _33.3 __ 4_ .... _11.1 __ 1 __ __ 2.a _10 __ _27.8 <12 12 -23 23 -24 Hour per Day Range: 8 -24 hour Tot.al Percent Nuaber (IS) hour __ 2 ___ __ 4.7 hour ---~ __ 18.6 hour -33 ---76.7 Tot.al patient.a _43 __ 100.0 Tot.al pat.ienta _36 __ 100.0 Pl note: Data roa three patient are included who were t.he vent.ilat.or l t.han our deinit.ion t.1 0 14 daya. lavct Additional Ii 20 tb vent11ator 2 aontba ___ 2 ___ __ 4.9_ Total pet.ient.a __ 41 __ 100.1_ 42 on /0',

PAGE 107

C Contrect 533-4935.0 TABLE~- Payot sourc ledicar Medicaid Private Feaily Other Inauranca ,c 0 aervic covrd <2SSC ___ 1 __ ----_.._2,_ ----~ ___1 ... _. 26 so" __ 1 __ __1 __ ------------------51 ?SSC __ 1 __ __ 2 __ --------..------76 100,C __ 6 __ 26 __ __2 __ _.., ___ __3 Total n __ 9 __ _2a __ __ s_ ... -----4 -- Plea .. note: Seven inatitutiona reported data on 40 patient. Nore than on payaent aourc Y be liated per pettnt. 1 patient ha HKO niora. 2 patinta have OHIP: Ontario Health Inauranc Plan. 43 ,.~

PAGE 108

( ( Contract 533-4935.0 000305 TABLE 6. REGIONAL INSTITUTIONS CASE STUDIES otbr JYM lsrdina Prolonau lsboical Ventilation for Y4J 1. Reapona to queation 5: What ia th approxiaate aaount billed per day ~or the elderly VAI in your ayatea? Range 0 coat<> 110 -2286 Nean coat<> __ 938.13 __ Total nubr 0 inatitutiona reaponding __ a __ 2. Reapona to queation 6: In t.b peat aonth have the nuabera 0 VAia in your ayat 65 and over. increaaed? decreaaed? or atayed about the aaae? Increeaed Decrea .. d Tot.al Nuaber ____ 1 __ _____ o __ Stayed about th ___ 9 __ Total __ 10 __ Percent<> _10.0_ ,c __ o.o_ _90.0_ 100.0 3. Reapon .. to queation 7: Do you think that i~ th next aix aontha the nuaber 0 VAia in your ayat 6S and over. wiJ.l increaae? decrea .. or atay about t~e aaae? Total Nuaber Iner-___ 3 __ Decrea.. ___ 1 __ Stay about th aaae ___ 6 __ Total __ 10 __ 44 Percent (fC) _30.0_ ,c _10.0_ _60.0_ 100.0

PAGE 109

( ( ,, o ,, .. _, o I "" o o ._ ., .. .. ,. ., ., o Contrct 533-4935.0 00030G TABLE 6. 75: thereore. 307/1065 patient ed > 6S. Future aelec:tion actor will~ chn9 auddenly over aix aont.h period. 4. Tb nuaber 0 VAia luctuate doth nuaber over 64 Yr oE However. we hv ... n no incr over t.b paat Ml year and anticipate no incre in th ut.ur. 5. Boat. 0 the VAia hav neuroauacular probl Th individul tend to be younger then 6S. 45

PAGE 110

( ( Contract 533-4935.0 000307 6. Thr .... parat opinion were aubaitted fro one inat.itution. Two opinion were, 'atayed about th aaae', with t.h following explenation: aoat of our patient ar chronic long tera, ao turnovar ia reletively alow. One opinion waa. 'an incra .. waa axpected', with th foll.owing explanetion: t.he winter aont.ha are the aontha of cerbation of reapiret.ory failure in COPD pat.ienta du to pneuaonia. URI. flu, tc Thr 1 a long-wetting 11at for our facility for patianta boapitalized on vantilatora at preaent, in both acute and un1vraity hoapitala in our area. 4. Reapon to queat.ion 8: In your opinion, what are th aain reaaona for placing an elderly peraon on a vntilator other than for lie-.. vin9 purpo .. a? Total inatitutiona reapondin9: 9 Tot.al uber 0 Percent Reapon ... (fC) a. enebl patient to continue a productive 11 _9_ _100.0_ fC b. pet.tent ha available aupport paraona t.o car for hia/har ...... 6 ... __ 66.7_ c. patient h appropriate coer or reiabur ... ent ___ s ____ __SS.6_ d. pet.tent. h a r .. eonabl level o aentel coapetence .__a __ __aa.g_ other 1. Sea "Guideline for Care m Ventilator Patient.a11 by ACCP. ,.._1_~ __ 11.1_ 2. Pet.tenth a r .. eonabl chance. of overcoa1ng th probl .. and/or t.be petient ia willing to accept the poaaibility of lifelong aechanicel aaaiatance. Pt.1ent.a on external ntilatora aboulct conatitute a .. parete category aince t.hia ia r .. d11y chang .. ble aituation not requiring intubation. .. 1 .... __ 11.1_

PAGE 111

( ( ,, 1, ,,\t ............................................... -....................... ,_ ...... ....... .. ,, ......... ,___,, ............................... ___ ."' Contract. 533-4935.0 000308 3. To overco apparent woraening 0 reapirat.ory ailure not. otberw1 rveraible. __ 1 __ __11.1_ 4. Noat iaportant. factor 1 reveraibilit.y 0 priaary di .. proe ___ 1 __ __11.1_ S. Optional vent11at.1on 0 en elderly peraon can uaually occur after diac:u .. ion wit.h patient and t.hir aaily taking into account. all 0 t.h above act.or. I th patient 1 ntally coaptnt, ater inoraation ia given, then the deciaion can be aade by th patient. I the patient 1 incoapetent, th aaily can decide. __ 1_,.. __ 11.1_ 6. None 0 t.h above. Rarely a patient will be a candidat or boa aechanical ventilation and all would hav to apply beor t.h deciaion ia aade to inatitute aecbanical ventilation. Th .. patient alaoat alway have chronic degenerative neurological di auch ALS. __ 1 __ __1:a..1_ 7. Reaaon <> we conaider t.o be th aoat iaportant reaaon to place an individual on long tr aechanical ventilation. Certainly b-d are looked at and conaidered in th deciaion. In addition patient choice ia alao extrealy iaportant in the deciaion aaking proc __ 1 __ __11.1_ 8. I .. 1 that th priaary reaaon auat be viewed fro the patint'a Y Thua I do not .. 1 coaortabl anawering thia queat.ion. ~-1 ___ __ 11.1_ 47

PAGE 112

( ( "' ',., '-'"' ~ .,, ,.,, ,,. ,., ,.,,, ,.,,, .,..,. ,,,.,. '"' "''"' "" ,.,,, ~,. ,,. ".i~-.J" ,.,i,., .. ,,. ... ,.,.,.,, J"'"' '"'"'"-'.i-.,. .. .,...,~w~w ,,...,. .. ,w..,.....,....,...,,..."'' '"" ... """ .. 4"" .. '"'"""'" ......... ._,, ... . Contract S33-493S.O 00030:) T~RI .. ~. 9. All th above 11ated reaaona ahow a very cold calculating approach to huaan lie. It ..... to be orgotten that aoat patient ro the nior citizen group who need or ere on aechanicel ventilation are ntally intact and WANT TO LIVE. They have had productive 11 in an earlier they have paid tax thy have built the proaperity 0 thia country. reiaed aa1ly. paid or the education 0 th younger generation and have aerved their country in aany dierent waya. It will be only air tht their ellow n give th the chance to live aa long aa they en3oy 11 even 1 they ere on aechanical ventilation. Ny patient, 9 0 12, are alert and bright and in th peat proeaaionala. Unortunately they either have no aaily or their aailiea ear taking th ho and caring or th There are no health related acilitiea or nuraing ho
which a~e equipped or ataed to take care 0 patient on reapiretora. Th three non COPD patient were poat CPR and put on reapiratora. Even 1 by phyaician'a diacretion the aechanical ventilation ia ound to be waate 0 eort--on cannot take th 0 the reapirator by atat law. On way ia to wean th 1 it ia poaaibl which ia very rare. The patient ha th willingn to accept the ventilator. __ 1 __ _11.1 S. Reapon to queation 9: In your opinion, what ia th aoat appropriet deinition 0 .. prolonged ventilator dependency"? Reapon to thia queation varied widely and diverged fro the deinition uaed in th data inventory. which waa peraona 65 and over who have required aechanical aaaiatance or braathing at leaat 4 hour per day over at leeat a two week ti period. The great.eat verianc in anawer we in the duration 0 ti apent on th ventilator to qualiy a patient being .. prolonged ventilator dependent ... Th deinition 0 the aaount 0 ti on a ventilator rang roa two daya to 3 aontha. The deinit.iona provided by the nine inatitutionat.hat reaponded to t.hia queation ere liated below. > 48 houra. or a portion or all of the day > 7 deya > 2 week > 4 houra per day or t lt 2 week > 4 houra per day or at. leaat. 4 week continuoualy > 30 daya > 3 aontha 48

PAGE 113

( ( Contract 533-4935.0 0 f) o ':) n l. ., eJ .... TLF 6. One inatitution did not uae ti referent in ita deinition. Thr inatitutiona aentioned other iaauea in addition to th ti rerent, which are liatd below. The need 0 inoraed conaent in th inatitution or continuation 0 ... iated ventilation eapecially in the c where it Y be applied to a peraon wbo fl~ t.hat hia/her 11 ia prolonged un3uatliably becauae it h no quality or aigni:ticance. Patient who r dependent on aechanical ventilation to auatein life end to iaprove t~e quality of 11 ar characterized by th following criteria: 1. after aany atteapta by killed reapiratory care tea ia not abl to be waned ro aechanical vntilation. 2. require aec::hanical ventilation continuoualy or interaittently to prevent reapiretory failure. The a9e of a patient abould never b a factor againat rend~rin9 aectical car including 11 aupport. Th aa3ority of our patient in the rehabilitation unit are aaintained on portable reapirator unit via trach or aouth piece to incr their aobility and henc their rehabilitation potential and independence --~---~~-----~-~~------~~-~--------------~-~-----~-----~----~~ Th queationa are taken ro th Regional Inatitutiona Ceae Studiea Data Inventory. See Appendix F. Canadian halth unda. 49 //l,I

PAGE 114

..... 1,,, ,...,;,,,.:,,.J-. ,a.1.,..,w.,,.,._,,._ __ ,"''"'_,...,_. ...................................... ..... -......,IIUi.' ... ...... ..... .., ...................... ,~,.-................... ....... _,_ --................... __ .. -.. Contract S33-4935.0 Int.rodyct.100 PART III CONNUNITY CASE STUDIES 000311 Chicago and New York City were choaen the two coaaunity ait to atudy the inetitution and raourc available or ventilator aaaiated individual in tho citi Thia provide another tier 0 analyei--t th coaaunity level--to coapleaent the perapectivea gained roa th national data inventory, and regional inatitut.iona ca .. atudiea. It provide en opportunity to.look at tb network o~ inatitutiona that Y aerve VAI in a given coaaunity--bot.h tho .. that are chronic car or rehabilitative in focua and tho that are aor acute-car oriented. Ann Koterla, ( 11.8.A., at the Chicago chapt,er or the Aaerican Lung Aaaociat.ion, collected data in Chica90. Howard Robboy. Ph.D. and Candice Clark, Ph.D. collected data in New York City. ( l:trbodology Th Regional Data Inventory< Appendix F> waa adainiatered t.o hoapit.ala, nuraing ho and rehabilitation inatit.ut in Chicago and New York City. Th inatitution wee contacted by telephone and the interviewer conducted the data inventory with an individual knowled9abl about VAI in their ecilitiea. There were proble in obtaining coaplt deta fro all 0 tbe inat.itutiona. For exaaple. the reapondenta or 82-0 ~-~-~--------~--~~----------~~--------------~------~~---------- Thia aection waa principally prepared by Suaen N. Dunaire, N.A., Reaearch Pro3ect A .. iatant. Th author grateully acknowledg t.be inforaation provided by Ann Koterla, N.8.A., Howard Robboy_ Ph.D., and Candie Clark, Ph.D. so

PAGE 115

( ( ,,. ,,,.,, ,,,. ~.....,...., ....... .,,.,4'11 .. ., .. ,,w .. .. ,.,,.,, .. .. ,~., ........................... ............ ._. ... .,. ........... .. .. .. '" ......................... .., Contrct 533-4935.0 00031j the patient in Chica~o r~~uaed or wr not able to give aoeciic ag or the .. ptienta. Likewi no exact payaent aourcea ware given or the 44 patient identiied in Chicago, ainc the aite reapondenta were not generally knowled9abl about payaent aourcea and ti would be required to check patient recorda. Two of the reapondenta in Chicago did not provide the length 0 ti on the ventilator and ao th tan patient are oaitted fro th atudy. Thr waa u~certainty aa to whether or not they qualified aa prolonged ventilator aaaiated. Tb inforaation fro New York City ia 1 detailed than that roa Chicago. Thia aay be attributed to the ti conatrainta of th interviewer. well aa to difficulty in identifying th knowledgabl peraon in th inatitution, aatabliahing contact with hia/her and convincing hia/her to participt in th data inventory. Releaaing patient inoraation. even though it ia not identified by na or nuaber. ia conaidared conidential by any health proaaaionala, and they are aenaitive to rel auch inforaation to o~one on the telephone. 51

PAGE 116

(: .. 1 Cont.rect 533-4935.0 OOOS)~fll_ J .) f1n41ns CONNUMITY CASE STUDIES Qhic:aqo Table 7 lieta tbe 44 patient ro the iv inatitution t.hat. reported VAia 65 and over. Th data are auaaarized in Table 8. Age and Diagnoai In Table 8, five hoepital 0 the 31 reporting inatitutiona liated VAI 6S and over. The 31 reporting inatitutiona were coapriaed 0 14 nuraing ho, two rehabilitation inatitutea and ten hoapitala. Forty-our patient were ~dentiied aa VAia, with the age range being roa 65 ao. wit.h aean age 0 70. The aoat prevalent priaary diagnoaia waa reap~ratory-related <84.1>. Cardiac coaplicationa were the greeteat percentage 0 aecondery dia9no <60>. Reapiratory d~a9no were the greateat percentage 0 dia9no leading to the individual being ntilator itd <77.3>. YLOS, VHRS, EVLOS Th ti apent on.th ventilator cluatered et both end 0 th apect.rua~ with 22. 7" 0 the patient on the ventilator 14 30 daya, 25.0 0 the patient on the ventilator 6 -12 aontha, and 20.s 0 the patient on th ventilator aor than year. 45.S" 0 th patient were on the ventilator roa 12 -23 hour, and 54.S were on the ventilator roa 23 24 houra. In reaponae t.o t.he queation 0 expected additional ti on th ventilator, c 47.7 0 th patient were in a weaning progr ... and 27.3 0 th patient were claaaiied aa lon9-tera continuoua ca 52 //1,

PAGE 117

. ,., .... .................. ........ ... ~.h .... .: ... .... t,4r.a,,w ......... .,. .. w.,.11ww.,14~1,1"-''W,.,1.,.,o,~-.....,_.,.,,,,,.,,, ..... .. ,,,,, ,....,.,,., .. ,,,,,.,.., .. ,...,,,,,w.:J~,11, .. ......... '"-" ..... "'"' ... ,.J.,,. ..... ............. .. ( Contract S33-493S.O 000314 Other Iaauer Coat, Payaent aource were not provided other than that ao 0 the patient were paid in p~rt by Medicare and aoae by Nedicaid. Specific percentage were not given. However, four inatitutiona did report an approxiaat aaount billed per day. The range wee SOO, with the n at S2.SO . YAia; Iner, deer or atay the? In th past onth, 1S.4 0 the inatitutiona reported that th nuabera 0 YAia had increaaed. 38.S 0 the inatitutiona reported that the nuabera 0 VAia had decreeaed and 46.2 reported that the nuabera 0 VAI atayed about the aaae. Looking ahead into the next aix aontha. 64.3 expect to aee en increaae in the nuaber 0 VAI~ no reapondent expected to a deer and 3S.7 expected the nuabera would atay about the aaae. Reaaona cited for an incr in VAia were 1> colder weather ia the on or reapiratory probl 2> becau .. 0 DRGa, private inatitutiona are tranaerring VAI to t.h public inatitutiona, 3> one institution receive reerrala roa en ailieted nuraing ho and 4> a undn diainih~ th aaily tend to leave the patient in the hoapital. Opinion; Why place P\ient on chan1ca1 vnt11at1on o\her than for li(a-aaving purpoaea? Over twenty-three percent 0 the inatitution reaponded that one 0 the in reeaona or placing patient on ventilator waa to enable hia/her to continue productive lie. Th aa percentage of the inatitutiona agreed that one 0 th aein reaaona waa that the patient h reaaonabl level 0 ntal coapetence. None 0 th reapondeata ~d that one 0 the aain reaaona waa that the patient h available aupport peraona to car or hia/her or that 53

PAGE 118

( Contract S33-493S.O 000315 tbe patien~ ha appropriate coverage or reiaburnt. About cnethird agreed that there we no other aain purpo than lifein9. Another so.a-agreed that the in purpo waa to facilitate poat operative recovery. On 0 th thirteen <7.7-> aentioned liaited aaily reaourc Appropriate def1n1t1on of "prolonged vot11ator dependency". The ti re of th definition auggeated ranged fro aore then 7 daya to aor than 30 deya. One reapondent etrd the quality of li~ in hi definition: The ventilator offer th opportunity to auatain and prolong th individual# 11 with the quality depending on the faaily and eupport. Other reapondenta take a aore clinical view. ntioning that it depend on th diagnoaia, whether-or not ventilation 1 conaidered prolonged. Another repondent claaaified prolonged patient who cannot be weaned froa the ventilator. Th variety 0 anawera auggeat that th point of view 0 th reapondent and hi or her proeaaion, in~luence the definition 0 prolonged chanical ~~~4nce. 54

PAGE 119

1. (. Contract 533-4935.0 finding CONlflJtfITY CASE STUDIES lv York c1ty Table 11 auaaeriz the data roa t.he proile 0 ca reported in Table 10. Th total nuaber 0 VAI in 9 inatitutiona i 94. Alaoat hal~ (46.?ts> o tbe dia9no .. or tho 1S VAI or which data were available were reapiratory. 26.7 were cardiac coaplicationa end 20.0 were liated 'other'. No diatinction waa aade between priaary and aecondary diagnoaia. and th dia9noaia leading to th individual being ventilator a .. iated. Th nuaber 0 deya on th ventilator ranged ro 21 to 1099 daya in th iv inatitutiona that reported VLOS. Forty percent <40.0> 0 th petienta were o" the ventilator 6 -12 aontha On third <33.3> were on the ventilator 21 -30 daya. and 20.0 were on 1 -3 aontha. All 0 the inatitutiona reported their VAI on the ventilator 24 hour per day. Unortunately, th date are too incoaplet to draw any concluaiona or aake coapariaona with the Chicago atudy. ss

PAGE 120

' .... ............ .._,..,,_. ..... lll,#V .I ....... J.,1o .. ,..h,.~thhl),h.Jl .. IIJ)l~--,~ ............. ,W
PAGE 121

~..,.,.'-4fI ... -., ................. ,-~ .... ._," ... ......... ,,. ..... ." ...... .lo1 ._,,,.,, !, .. ,,. o '' 1, .... ,,. ..... ,.,. ,., ... ... ,. ,. Gon~ra~ 933-4935.0 00031& Ta. 7. IDIUIITY allE snm1a Dlla&I NI IJMltan eror,i, era .,,,,,,,, VAi AE 1181811 IIOT \\Ill MIS Mm PAVIENl'SllllS Cdays) CllollNJ (dlylJ llldimre llldieaid 111-iYlta Fily Otw v.tilalar ...... IIIIIUNID (SPECIFY> c... 011111 ... _1_>&5_a>Dialllllll/ Prap_tl_M_CIIII_ 1 2 3 4 5 ~-ll)Palt c:ardia: Arrat CS) cio ,., ,., m_ cJPolt Cniae .,._ _2_>&5_1Hllltiple L\W1_ _174_ 1 2 3 4 5 wr.no._ cJlllltipla GW I cs,_ cs,_ cs,_ ,., ,., _3_,._., ... ...,_._445_ 1 2 3 4 s fail .. ldU CS>_ ,.,_ (I) ,., ,.,_ ( cJU ._4_>61_., ... ,..,,_._ .. 1 2 3 4 5 fail ... talalll cs,_ ,.,_ (I)_ (j) ,., cJlllpiNta,y fan ... CA rigllt 11111. _s_>&S_a>lllpirncry_ _11_ 1 2 3 4 5 failn taJDF ">-cs,_ ,.,_ ,.,_ ,.,_ cJDF 1 2 3 4 51t1tt -I cs,_ cs,_ ,.,_ Cl) Cl)_ _7_>61_a)a..ic -" l 2 3 4 5 flllldNta,yfail .. ~HUlli ..... cs,_ c.,_ Cl)_ cs,_ ,.,_ cJU __ ._,._., ...... .,_._31&_. l 2 3 4 5 ,.u ... ,.,_ (JI_ ( (I)_ cs,_ cs,_ 57 //f

PAGE 122

,...~._ ...... ~-.;..-~-. ._-....,,...,...,w~ .. -.w.;..;,.:,._.;.,.,;.:,. ..... '-- ..,." ._..,.._"-~~-'"-" ... .,.. ... ..., ...,.,.,,._.,.1,1e1._ww,, ... .,.,. ~ ... "'" ........... ., :; ....... .~ .............................. 1 .; .,.. w~-- ...... ........... ( contract S33-493S. e 000319 VAi & DlaJ81S IIIIT \UII HI E\UJ8 PAMNT aulB C-,a) Cllalrs) (days) NldiCIN llldicaid .,_.iYltl Flllily llblr _,_,m_a,111p1m-,~_m_ __ flilwe MIDIIIDF/11111 cJCDIDIDF/ .. 11_,m_ulllpirua,y_ _411_ __ failve b)LW Aphasia_ cJL\11 ___ 11_,._., ... ....,_._._. __ failve Mllplrdiall 11111 I itis cl llllpil'ltorJ fat 1 ... 12_,m_., ... ....,_. _n_ __ flil .. MPalt cardiac.,... cJlllpil'ltorJ fail.,. l1111raa CIPECIFYJ 1 2 3 4 s __ CA_ CS)_ cs,_ ,.,_ Cj)_ 1 2 3 4 5 __ C.)_ (S)_ ,.,_ (I)_ C,)_ 1 2 3 4 5 __ (1'>_ CS>_ CS>_ ,.,_ <,>_ 1 2 3 4 5. __ c.,_ (S)_ cs,_ ,.,_ ,.,_ ( 13_>11_ulapir--,__29_16_Mllning prapl1 2 3 4 5 __ ( fliln ~---w_oo_w_oo_w_ cJU. __ 14_,a_a>Orcldc. __ ._417_ __ nsptmcr, i ... fflci-=, It) __ cla..ic ""Pirner, i ... fficiaq 1s_,m_ulapil'ltorJ_. _112_ -fail ... ,,_ cardiac ll'ftlt cJlllpir~ fail_... 1,_,m_., ... .....,_._11_ __ fail ... .. __ cJINpimcr, f1i 1 ... 17_>11_a)lllpil'ltorJ_._l23_. __ iftllfflciaq _,,_ cardiac llftlt/di..._ cJINpimcr, illllfflci-=, 1 2 3 4 5. __ cs,_ cs,_ 11,_ c>-cs,_ l 2 3 4 5 __ Cl)_ cs,_ CS)_ c>-C1')_ 1 2 3 4 5 __ CA_ cs,_ cs,_ ,.,_ ,s,_ 1 2 3 4 s. __ c.,_ cs,_ ,.,_ Cl)_ ,.,_

PAGE 123

.. --. ............................................................ .................... -. ............................. .......................................................................... _. ......................... -~. -. ... .. Contract S33-493S.e 00(\'"l~f\ \.' '-' t, T .. C 7. (eoftlilllldl \Ill & 1181818 talT w.m \ltll E\\.OS PAYIBITmRB c-,., c....., (dip) llldiCIN Nldiwd Private Fily Otlllr 1 ......... CSPECIFYJ 11_,._., ... ...,_ _1a_ l 2 3 4 5 fail .. Mltlrlp1ap1_ (I) ,.,_ Cl) ,.,_ ,.,_ cJ........,fail ... 11_,a_., ... ...,_._m_ 1 2 3 4 5 ,.u .. b>DF, lllalr lelwolis, lludrlplagi1 ,., (I) OD (I) ,., cJlllpiNtar, failll'W 21_,u_.,.._...,_ _,_. l 2 3 4 5 ,.n .. ., (I) (I) -cs,_ (j) ,., cJlllpi..., fail ... 21_,a_.,.._...,_ fl_ 1 2 3 4 5 fail .. .,,_ Clrllia: ...... (I) ,-~-CS) cs,_ ,., dlllpiNtary ,.u ... ( 22_,a_., .. ....,_._m_ 1 2 3 4 5 ,.,1 .. .,,_ canlia: .,... ,.,_ ,.,_ cs,_ CS> ,., cJlllplNtoly fail ... a_,u_a>IIIPiNtoly__m_ l 2 3 4 5 ,.u ... .,,_ eardia: ...... CIJ Cl) ,.,_ Cl) ,., d........,fail ... 24_,a_a>lllpiNto1y__ 1_ l 2 3 4 5 fail ... .,,_ cardia: .,... ,., ,., ,.,_ CS) (I) cJlllpi,_., faillN 21_,a_ulllpiNtoly__s,_ 1 2 3 4 5 tfficl-=, ., ..... iaefficillley c> ,., Cl>_ ,.,_ ,., d........, illMlffici-=, ._,a_.,...,.._,_. __ ._. 1 2 3 4 5 fail .. ., CS> ,.,_ cs,_ Cl) ,., dlllpi..., ,.u ... ( 59

PAGE 124

.... 111,.,._.,_..._ ............ ,,.._,..,._,,,.,w ..... ,. .......... .. ........... ,..,,. .. ,,. .,,. ... _.,.,., .. ,. ~ ......... _. ..,,""' "", W' ..... ~. eontract S33-493S.e fllU 7. (cont iftllCII 000321 \ WU DlaJIIS IIUT \\Ill \1111 E\UB PMIENTDIEEI c-,., ,....., (dlyl) llldiCIN llldicaid Pl'ivdt Flllily .... l....a CIPECIFYJ n_,a_a>lllpiretcrJ_ _121_ I 2 3 4 5 fail ... 111,-cardiac .,_ C.) CS) C,) Cl)_ ,., da.,iratcryfaillN 21_,a_a>IIIPinatorJ_ _>4_ 1 2 3 4 5 fail ... b>Poat cardic ll'ftlt C,) CS) ") ,., (S) d lllpiNtary fai 1 ... 29_)&S~a>lapinatorf_ _)4_ 1 2 3 4 5 failva_ lllltalt cardiac ll'ftlt Cl)_ ,., CS> ,., (I) c)lllpiratcry fail .. _,a_a>IIIPiNtarr_._._ 1 2 3 4 5 ,.u .. lllltalt cardiac .,... ,., Cl) ,., cs,_ Cl) cHl1api...., faillft (" u_,a_a>lllpinatorJ_ 1 2 3 4 5 fail ... ll)ltllt canlilC ...... CS> CA_ ,., ,.,_ Cl) dlllpiNtary ,.u .. _._.,.,_hai1_1a,_._11_1o IIGIII 1, 1 2 3 4 5 hvis_ llllapim-,fail'" ,., ,., (I) ,.,_ ,.,_ c)lllpiNtary f1il.-. llrtical 3J_U_a>a...,_1a,_17_24_St.ill lllt I 2 3 4 5 ...., di-IIIDI DI ,,., ..,,.. cs,_ ,.,_ ,., ,.,_ ,.,_ dlllpiNtaryfail .. llldical ._._., ... ...,_m,_1,_21,_111111111 off I 2 3 4 5 fail .. II) CS) ,., ,., CS> (S) cllllpiNtary fail.,. 35_15_1)_ IIIGI_II_M_Eapirlll_ I 2 3 4 5 II) cHIIII w_ ,.,_ cs,_ cs,_ cs,_ ( ._

PAGE 125

Contract S33-493S.8 000322 TCIII.E 7. CcantillUld) WU & 11'81919 IIIIT W.18 \NIB E\UB PAYIBITSIIIID Cdlys) Cllalrl) Cdlys) Nldimre lilldicaid Privlt1 Faily Othar 1 ...... CSPECIFYI a_a_-,L .. Cllar _SIQJ_14_24_CFF 1 2 3 4 s II) e>'lllaroclhlly_ cs, CS> CS>_:__ cs,_ cs, J7_72_a)alJD NIQl_151_24_11111111 1 2 3 4 s ta) eHD11 (S) CS> (S) CS) Cl) 31_67_., .... c.a,. _1at_31_24_lNOGN 1 2 3 4 s II) c>llltai,_., fail .. CS> cs, CS> (j) CS> 39_._a)Ptilaui1_1Q1_53_24_11111111 1 2 3 4 s lllpl-1 llfflli e)lllpi,_., fail .. Prilllry cs,_ Slcondlry CS>_ ">( 41_ .. _a,CDII Ial_ll_M_LIFETINE 1 2 3 4 s 11)011 e)alll CS>_I_ (S)_ CS>_I_ cs, CS>_ 41_Nlt_a)IJIII IQJ_ll __ 24_JIN E iBII 1 2 3 4 5 11)09 e)PllidlllOUI_ cs, _1_ cs, c.,_ ,., CS> --42_ .. _a,m,o 1a,_31_21_ 1 2 3 4 s ll>Da e>CDII cs, _I_ cs, cs,_ cs, Cl> 43_ .. _a)CJIII 1111 __ _8_14_ 1 2 3 4 s 11)09 c>lrli Tar_ CS> _I_ CS> CS> c-. CS> .. .. _a)IJIID 1a,_1._M 14_ 1 2 3 4 s II) eHDI cs,_ CS> CS> cs,_ cs,_ \. .. llll'WuaE 61

PAGE 126

( ( TABLE 8. CONNUNITY CASE STUDIES CHICAGO IYEY BP90H 8\ prp(il Bpgr\&o Ja\t\y\1001 Tot.al nuaber: 11 Nuraia9 ho= 14 lebabilit.a~ion Inatitutaa: 2 Hoapit.ala: 10 Tot.al nwaber wit.b VAI 6!5 and older: S Hoapit.aia YAJ Ba0rt, Tot.al nuaber t 65 nd older: 44 A9 ran9e: 65-80 an age: 70 0 0 0 3 ;~ 3 Thia nuabera baaed on 8 patienta. Only on inatitution would report. exact as P419D9M Priaar7 Cardiac c:oaplicationa urol09ical/neuroauacular (!a. ALS, C:VA, Polio> leapis-atory Ot.ber Cie. t.rau G.I. ayat canc:er> Total Secondary Cardiac coaplicationa leurol09ical/neuroauac::ular Cie. AUi, CVA, Polio> Reapiratory Other Tot.al Leedin9 t.o bein9 ventilator aaaiat.ed Cardiac aoaplicationa Cie. CHF, Aor~ic aneuryaa> leurological/neuroauaaular Cie. AUi, C:VA, Polio> Reapirat.ory Cie. OOPD. ARDS. pneuaonia> Ot.ber Cie. t.rauaa. G.I. ayat. ... cancer> Tot.al 62 Total 1 3 37 3 ------44 21 7 s 2 ----3S 2 6 34 2 ---44 Percent 00 2.3 6.8 84.1 6.8 -------100.0 60.0 20.0 14.3 S.7 ------100.0 4.S 13.6 77.3 4.S -----99.9

PAGE 127

: ( (, '', eon~ree~ saa-4,as.o 000324 4 14 1 3 6 TAIUE a. BPPE\M Ti 90 Yn\ila\pr Total Tiae Range: -977 day -13 daya 30 daya -3 aontba 6 aont.ha -12 aonth > 12 aonth Tot.el Percent Nuber <> .......... 1a.2 _10 __ _22.7 __ 4 ___ __ 9.1 ___ 2 ___ __ 4.S _11 __ 25.0 -------_20.s <12 12 Houra per Day Range: 12 24 houra Tot.al Percent Nuaber <,c> hour __ o __ _o.o 23 hour _20 __ _45.S 23 24 hour _24 __ _54.S Tot.al patient.a _44 __ 100.0 Tot.al pet.ient.a _44 __ 100.0 Pl!I not.a: Data :froa ei9h1:. patient are included who ware on t.he vent.ilat.or le t.han our cleined t.iae 0 J4 daya. iass~ 6ddi\4u11 IA 0o \h Yot,11\0r Total Nuaber Percent 00 Lif'et.1ae ___ 1 ___ __ 2.s_" Lon1.t.r cont.inuoua __ 12 __ _27.3 W.anin9 prograa __ 21 __ _47.7_ 14 claya _____ 2 ___ __4.S_ Unknown _____ s __ _11.4 Weened of':f ____ 2 ____ __ 4.S_ lxpirecl ____ 1 __ __ 2.3 Tot.al patient.a __ 44 __ 100.0

PAGE 128

1:i .... '. ,I t f I :. ; ~ 'I ' .. ............. ::.: ..... : .... ............. -. .. ... r1: C C:Ontrat 933-4939.0 TABLE 9. CONNUNITY CASE STUDIES CHICAGO 0003.25 A\bt Jv Bnrdina Pc0ieostd l1Ab101aa1 YM\ila\A9D (er YAI1 1. Reapon .. to queation S: What 1 the approxiaate aaount billed per day ~or 1:.b eldarly VAI in your ayateat Ran9 o~ coat<> 185 500 Reen aoat. <> __ 392.50 __ .. Total nuaber 0 inatitutiona reapondin9 __ 4_ Nine additional inat.it.utiona rea,onded 'Don't know'. 2. Reapon .. to queation &: In the peat aonth have the nuabera 0 VAI in your ayat .. 65 and over-inc::reaaad? dec:raaaed? or atayed abou~ thaa Increaaed Dec:raaaed Tot.al Nuaber ...... 2 __ ___ 5_ ... Stayed about th ___ & __ Total __ 13 __ Percent.<> _15.4_" _38.S _46.2_ 100.1_ 3. Reapon .. to queat1on 7: Do you t.hink that. in the next aix aont.ba the nuaber 0 VAia in your ayat .. 65 and over, will increa .. deer' or atay about th? Tot.al Nuaber Iner ___ 9 __ Deer.. ___ o __ Stay about th .... ~--5 __ Total __ 14 __ -Percent. (,c) _&4.3_" __o.o_ _35.7_ 100.0_

PAGE 129

1-'' ;~:,_: '' ,., {, .:r_ '.\ C ... / eont.raot. saa-4,n.o bplentiona: ''""" 00032G TA8LB 9. 1. Due to DRG privet inatitutiona are puehin9 t.h onto public inatitutiona. ___ 1 __ _7.1 2. Colder weather. Th a .. aon or reapirat.ory probl ___ 6 ...... 42.9 3. A*i~iat.ad with nuraing ho t~at. reer pt1tient.a. ____ 1 __ _7.1 4. Run out 0 unda and aaily leave~ pa~ient. in the boapital. __ 1 __ _7.1 l\11 bgy\ \b 1. Perbapa alight inc::r .... due to iaprovecl tec:bnolo9y. __ 1 ___ _7.1 4. Reapon .. to qu .. tion a: In your opinion. what are the aain reaaona ~or placing an lderly peraon on ventilator other t.ban or lie-aavin9 purpoMet
Total inat.it.ut.iona r .. pondin9: 13 enable patient to continue Total uber 0 Reapon .. a a procluc~iva 11~ __ 3 __ b. patient h available aupport peraon to care or bJ.a.lher __ o __ c. patient. haa approprite aovera9e or reiabur ... ent d. patient. h r .. aonbl level d aental coapetence .... o~ .. ___ a ____ __23.1_ __ o.o_ ___ o.o_ __23.1_

PAGE 130

Conuct. saa-4935.o TABfF Cl. other 2. Poat opertive. 000327 __ 4 __ __ so.a ___ __ __ so.a 3. Liited ~ily reaource. No ho to diachar9e to. Unnawerect queation by other boapital contactad about boa care. Vt aupport ba .. ia nec:ea .. ry. to place back in-th ho ____ 1 __ ___ 7.7,.. s. Reapon .. to queation 9: In your opinion. what ia the aoat appropriate d~init.ion of "prolon9ed ventilator dependency"? Repon .. a to thia queat.ion varied widely nd diver9ed ~roa ~b de:f'inition uaect in t.h dt.a inventory. which waa peraone &~ nd over who hv r~uired aechnical aaiatnce or brthin9 t 1 .. at 4 hour per day over t leat a two week ti period. Th 9reat. .. t variance in anawera waa in tbe duration~ ti apent on the-ventilator to quali~y patient being "prolon9ecl ventilator dependent.. Th def'inition o* t.be aaount. d tia on a ventilator rang roa aor t.han 7 daya to aore than 30 daya. The denitiona provided by t.he 12 inatitutiona tbat reapondecl t.bia quetion are litad below. > 7 day > 2 week at lat 2 weeka to 2 aont.b 24 houra/day > 3 week and unable t.o ba weaned. > 30 day In addition to the tia rderent given. the ~allowing deinit.iona were au99eat.ecl. Depend on tbe diapoaia. Soaetia .. anything beyond a couple 0 daya ia prolonged. Ventilator o~~er the opportunity to auat.ain and prolon9 the individual~ 11 wi~h t.he quality dept1nding on th aaily and aupport. Oae ~hat we cannot wean ~roa the ventilator.

PAGE 131

I \ ( (. ., : .. .. .~ ........ ~ ..... : Cont.raot 533-4935.0 0003~:_; TABLE 9. Peraon in need o* no *or o* intenaive car other than ventilator. People who do not. need hoapitalisat.ion. aoaeon who will never be bl t.o breet.h on own--not. lUt t.o 9et t.h over rou9h apot. lnteraediat.e or teaporary li~e aupport/aaintenenc until phyaioin on intervene. --~~--~~-~---~-~------~---~---~--~~~-----~--~--~----~---~--~- The .. queationa are taken *roa t.h Regional 1nat.itut.iona C St.udi Oat.a Invent.ory. S Appendix F. 'l \ &7 \ri

PAGE 132

1r.~,~--~~ ... ~-~-_.._-.................. : ......... ,~ ... ......................... ..... t Table 10. CDllllllllff CASI STUDIIS IOIII Allrl lenrtcr= ,erw enc:111 If ct erar-fd ( c: \ Inr4Sd:&M fttle lit. 1&11 ,. 1 5 I& 2 7 D a 1 ... 0 --I I I II 7 10 I / I 20 t l 10 a: lot &wailable leurol01iaal cva rr ... PonCVA D Poet, CNINiac ... -----COPD1 CIIF ... C..a COPDs ,, .... u .. bMn failUN COPD1 ear COPDJ Cir II COPD ICU CD' & CCU COPD ca o1 ,..,. .. Aortic:...., .. ....... .. \ I I 1-1 24 ,. ,...... aoo 24 .,. IIO 240 240 240 IIO ... --------to 24 IA IO 24 IO 24 IO 24 ao 24 II II IA IA 24 .,. IA II ., IO 24 IA >21 >21 000329 ., .,. IA --II IA IA llecU.c:are & llecliceid IA Private Inaurance lleclic:ar & Private Inauranc:e /.lf.

PAGE 133

~?'~;;.;~.,; .~ .'t:~ ;,~:; .. ;.-:-~;~:.: :.~ .... ; ;"": ::;; ..,;;,,..; ... ;,;, ;,, ..,_._ ..... .., ,.; ,;o ,; ... ;~ ,' .; ... ,. ;-..... : . ;:,._,,,;.,;. :--w.., .. -:~'."~ ":-.~.-~t -~ -;_"; ~--.--:~--. .. -: :, ~ ... ... ; .. ;." .. .. S: ~ -.. ~-t C ( TABLE 11. CONNUITY CASE STUDIES IBW YORK CITY lurx BMMDH Ba\ profile 19a91:\&n &n\&\M\1 aa Tot.al DUIIMrl 10 Tot.al nuabar wii:.b VAJ 65 and older: 9 YAJ IM9E1iM Tot.al auaber a9e 65 and older: S4 A9e z-an9e: MA lean a9e: MA Qiaapg Total C.z-diaa aoapliaat.iona 4 leurol09iaal/nauroauaaulu: 1 Cie. ALS, CVA, Polio> ,, .. at.or, 7 Ot.ber 3 c, uau G.I. epat. ... oncer> Tot.al 15 89"Et;wl r,,. on Yn\&1\0r Tot.al Tiae Rn9e1 21 1095 day 21 30 da7a 1 3 aontJaa a 6 aoatha -12 aontJaa >12 aoatha Tot.l p4at.ient.a 69 Tot.al uber ~s __ .. ,_3 .... .... o .... ___ 6 ____ __ 1 __ _1s __ 0 t' r. ,ry I ,j .. v _. Percent on Percent. 00 26.7 6.6 46.7 20.0 100.0 _33.3 _20.0 __ o.o _40.0 __ 6.7 100.0

PAGE 134

I \ ( l Contrct 533-4935.0 000331 PART IV. coCLUSIOIIS AND RBCOaNEJIDATIONS A paucity 0 dat exiat.a on th nuaber ~nd characteriatica o~-t.be elderly on prolon9ed aechanical ventilation and the ~inncil .. rvice-relatecl. nd ethical 1 .. u aurroundin9 their care. Tb re .. arch reported here repreaenta an ~ort. with liaited ti and reaourcea. to 9ather det t variety 0 ll--nationally. regionally. and coaaunity-wide--on thi popultion ln en **ort to in~or ao 0 th iaau Center *or Health Adainiatration Studiea . Th Univeraity -. o~ Cbicqo. durin9 the aont.ha o~ July and Au9uat. 198S. with input and aalatnce *roa co11 .. ,u .. at th Aaer1can Aaaocition o~ leaplratory Tberapiata. the Chicago Lun9 Aaaocietion. Trenton State Coll-. Non~clair State College. Rut9era Univeraity end Cbildren'a N .. orial Hoapital . There r aethodolog1cal lialtationa with each 0 the date .. t.a reported here. which are clearly atated in t.h diacuaaion othe atudy aethodology in t.h reapecti aectiona 0 th report. Tbe .. liaitationa auat be borne in aind in analyain9 and interpreting th *indln9a nd in conaiderln9 how generalizable tber are tot.be univer ... t.b varioua data collection e~orta were intended to repre .. nt. ------~-----------------~-----------------~--------------------- Thia aec~ion v principally prepared by Lu Ann Aday, Ph.D., ... rah Aaaocit.e , Aaaocit. Direct.or or a .... rc:h. 70 I I

PAGE 135

(. Contract. S33-493S.O 000332 Th finding, in 9aneral, auggeat that the nuaber of vent.ilt.or aaaiat.ecl elde~ly ia quite There ia apt t.o be aubatantial underreportin9 in the Aaerican Aaaociation of R .. pirt.ory Therapiat.a _ aurvey auaaarized here. That. at.udy eatiaatea pproxiaetely 1,236 elderly VAI in th 37 atatea for which 198S dta were available, however. Th AART atat repreaentatiYea reporting eatiaeted that approxiaately 1,016 <82> 0 the .. individual were hoapit.alized and t.h balance <220 or 18> were at bo Thia repreaented rate of 5.3 VAI per 100.000 elderly in t.b att .. reporting. So of th aaJor regional inatitutiona approached in the regional ca .. atudi had no or very aw elderly VAia. 0~ the 31 nurain9 ho rebabilitation ~aciliti .. and hoapitala contacted in one 0 the coaaunity ca .. atudy ait ... only five hoapitl reported having elderly VAI wbo aet the atudy criteria--required aec:hanical aaaiatance or br .. tbin9 t. let 4 hour per day over at lt two week ti period. Tb .. elderly individual on ventilator tended to be the "old" elderly. Th n of elderly VAia identi~ied in the regional inatitutiona ca .. atudiea waa 72 and in the coaaunity ca .. at.udy ~or which deta were aveilable, th an of VAI for tbo .. inatitutiona reporting waa 70. R .. piratory-relat.ed illne ... were tb condition reported aoat often 1 .. din9 to t.b individual' actually bein9 on ventilator. Neurological/neuroauacular end cardiac coaplicationa were alao ~requently aentioned priaery and/or aecondry condition experienced by the VAI for which 71

PAGE 136

( Conuact. 533-4935.0 000333 data were rported. A lar9 proportion of VAia in both th ragional and coaaunity ca .. atudi .. wer reported to have been on th weatila'tor 1 ... than year. a.er half in t.b regional and t.h one aoaaunity a ... atudy reportin9 th .. data were on th wentilator pract:.ically all day <23-24 houra>. Bany were expected t.o reaain on a ventilator fort.hereat. of their live or for an extendad period of ti Tbere w no conaanaua aaon9 tboae rporting of what criteria eccurately defined prolonged" aechanical ventilation. Eatiaat.aa ranged froa two daya <48 hour> to t.br .. aontb or longer. Iaportant. criteria cited by aany in det.eraining who and bow lon9 to ventilate included wbetJler <1> it would enabl th patient. t.o continue p~oduct.ive lifeJ <2> th patient had a reaaonable level of aental coapetenceJ <3> t.ber waa a aupport ayat.e to care for hia/herJ and <4> eppropriat. coverage or reiabur ... ent wa availabl Tb AART aurvy pointed out that over one-third <34~3> of elderly VAI would be able to 90 boa fro tbe boapital 1* adequate reiabur ... ent were available. That. at.udy .. t.iaet.ecl en average dily inpatient coat. per day of for VAI . r .. ultin9 in an annual coat of hoapltalization of .760. They coapared t.hia t.o an average tiaated aontbly boae care coat of .853. reaultin9 in an .-as annual coat. o~ 922.23&. AART then eat.iaeted aavin9 of around 11278.000 fro t.renderrin9 an eligible VAI fro the hoapit.al to hoa care .. tt.in9. 72

PAGE 137

Contrac:~ 533-4935.0 000334 inatituti.ona reporting in th regional ca atudi waa epproxiaately n38 . Th vaat aaJority oE hoapitalized elderly VAia identiEiecl by t.be .. inatitutiona were covered by ecticar and Nedicaid. Finenciel iaau were aentioned iaportent correlate 0 probable trend in th nuabera oE elderly VAI in inatitutiona like th on atudied. With t.h advent o proapective payaent. aoae reepondenta ar9ued t.hat coaaunity, acute-car hoapital will no longer be able to u~ord" to care or lon9-tera elderly VAia. Repreeenta~iv .. 0 chronic car and rehabilitation acilit1 tben tend to expect an increa .. in t.b nuaber o elderly VAI in their inatitutione, aa a reault 0 increaaed referral froa th .. coaaunity boapitala. In aua, the .. preliainary date au99 .. t that though th nuaber of elderly VAia on prolon9ed aec:hanical ventilation ia quite all overall, to the ext.ant they reaain on ventilator in inpetient .. ttin9a, t.h coat of caring Eor th aay be high. There ia evidence, however, that PY 0 t.he .. individual are DSaS:. neceaaarily terainally ill. Conaiderationa 0 the poten~ial 0 tb individual--phyaic:ally and aentally--to carry on a produc~ive 11 are wei9htecl heav11, in caregiver' deciaiona to entilate, ia the availability 0 ~aailial or other aupport ayat .. to care or th One aource eu99eata that about one in tbr .. elderly VAia in inpatient aettin9a could 90 ho i~ Eundin9 were available and that the reaultant .. vin9a to th public prograaa that priac:ipally ~und t.h .. individual
PAGE 138

,.. . .... ..... ~. ~. . ,, .. ........................ h .................... ............ ~-~~------ ........ { ( l. Cont.raat. saa-,,as.o 000335 aacl Bedicaid> could be aubatantial. Nuab or rerab need to be don on t.hia population to aoat. :full7 and accurately adclreaa t.b ... 1 .. u ... however. A lnclicat.ecl tJarou9b en inent.ory national or9anizationa dealin9 wit.b b .. ltb care 1 .. uaa tbe el.derly. aoae bav data t.hat aight. be uaecl to 91 .. n aore inai9ht.a about. th prlnce. ut.ilizet.ion, and coat d caring :for t.hia population. Tb aet.bodologi developed her could be epplied in or ayat. .. at.ic and coaprebenaive nationwide date 9atherin9 d~ort. 1 :fund and t.ia were aailable. nu.a. iaau .. will not. away aa t.h populat.ioa aontiau .. to ... and 1:.b t.ec:hnolo,i .. :for auataining li-E continue t.o 1ncr .... in nua'ber. Th r..-.rch report.eel here repr .... t.a an d:fort to be9in to abed lipt on tbe .. iaauea :for one particular group o-E t.h elclerly--t.hoae on prolon9ed aecbanical ventilation. 74

PAGE 139

....... :. .. '.. ; -. ( (_ PAR1 V EPILOGUE 00033G A prelia1nary report. on Teak 3 wee aubaitted t.o t.be Oi'ic:e 0'6 Technology A--ent. in Sept.eat.er 1985. Subaequent. t.o t.raa .. 1t.t.in9 t.bat. report.., r .. ponw roa t.wo aore r-.irmal ca .. at.ucly ait.ea. cont.acted ori9inally., were ret.urned t.o t.he Cent.er or a .. 1t.b Adainiatratioa St.ucu.... Tb dat.a roa t.b ... inat.it.ut.iona are 1ncorporat.ed int.he raviaed t.abl and t.ext. in Part. II ot.hia inal report.. In addition. OTA raiaed .. veral clariyin9 qu .. tiona in reapon .. t.o t.he original report.. The .. queat.iona and our r .. pon ... t.o t.b .. are aWU1arized below. 01c1ar M\&n\ hY h&sbv hgap1ta1 coat t.bo peraon under 65. by? Ia t.bia coaaent in r .. pcm .. to the irat aent.ence on page 69 0 the Sept.Hber report. [now page 73J: The average daily inpatient. coat.a ~or elclgly VAia or inat.it.ut.1ona reporting in t.he regional caae at.ucli ...... approxiaat.ely_"44 [reviaad eat.iaat.e 11938J . Th c::oat. coaperiaon in t.bia at.at.eaent. i bat.ween t.be an coat. or VAia ua yd oyer report.eel in th regional ca .. atudi and tb AART coat .. t.iaat.a or all 99M o Y&Ia. The variation in t.b ... two coat t"igu.r .. could be due to t.h t.ot.al nuaber a* inat.it.ut.iona report.ing coat. dat.a. aa well aa variation in the 89 o th ventilator pat.ienta. What.ever t.he explanation or t.hia variation. t.h intent. 0 t.ha at.atuent wea not. to prove or to explain that older patient.a have higher coat.a than peraona under 6S. Thia at.at. .. ent cannot be aupported with data roa t.b~ at.udy. hal&o your c;ope1ya1on t.hat. ox" patient rec;e1v1n9 w;byical yept.111t.J.op E got. PFMHEily t.eraina11y 111 .. Can H9 zai, Mb\ E MB 11k9ly aed1c11 cond1t100 19acupa \o SihAt COPD. polio. ARDS. r .. piratory -1.ailur How y14uprud & \hi prac;t,1c;e, Cannot det.erain t"roa t.bia atudy. tr \b9H \b H 1nd1y1dyl n v cona1derec1 bl to so tmT Tbia ia a1199 .. tec1~ a.lt..bougb it. cannot. ba clearly proven by t.be dat.a. Th AART at.udy a*i'ered t.h nuaber o pat.ient.a d ... ed able t.o go boa i f'undi119 were available. but. gave no dia9noaea. Th ragional ca .. at.udi .. provided t.h diagnoaaa. but. not. clar1~icat.ion m wbicb patient.a or how aany patient.a c:ould be d ... ed able 1:.o 90 hoae.

PAGE 140

( (. : t '. i,', I .... 1111, ., ,.. o,\., ............. h I ...... _.. t 'I .. ,,- r' .,. '. Contraat 533-4935.0 Ooo~')f"'f t.hJ' PlH glagify xev st.t~1.111t.ign of .. YDi.nellJ!....ill.".!. Th d*init.ion uaed ia t.het fro Qecidina t.o For990 Lifsya\ain4p9 Tgeayant, t.be Praaident' Coaaiaaion for t.h Study o6 Etbicel Probl in Nedical and Bioaedical end Behavioral Reaeaa'cb. rah 1983. p. 25-26. Thia ia not. an 'ironclad ddinition', but one which vari according to th individual' condition, t.akin9 into conaideration the patient' aental capaat~y. will to live, exiet.enc of aupportive aa1ly and continuance fd a product.iv li with aec:banical iatance. Th --nee a t.h ning ia that. aechenical aaaiatance ia bein9 uaad t.o enhance lia not. 3uat. to "prolong death ... Qo a11 \b data you obta1nec1 fro tb Yt.ro 64oiatration rl1t. t.o th Chicago Y6? w. woyJd like 0 1nforaat.1on fro \h Y6 sntri 0ffic 11 w911, Ia t.h report, all t.h data waa roa t.b Veteran Adainia~ration in Chicago. Since the report we aubaitted. inoraa~ion on t.b VA dat.a eyat.ea baa been ob~ained ro th Veteran Adainiat.ration in Waahin9ton, D.C. Th data r led and c:ocled by diapCNMUI. Th patient racorda or patient.a age 65 and over who Y po~entially be VAia could be reviewed to iden~i~y how aany VAia exiat. Another option ~or collac:ting data would be t.o eurvey all th VA hoapitala uaing th re9ional data inventory. Bot.h option would require a great nuaber 0 aanpover houra. Th procedure to obtain thia in~oraation ia to cont.act Nr. Walters. Adainiatrat.or 0 VA ~air 810 Veraont Ave., N.W., Waahington. D.C. 20420. (202> 389-3781. Whrvr poaaibl, break data on tb ldrly 10\0 r apeci(ic 19 9EAMP, In Part II, Th Regional C Studi, there waa a total of 46 pat.ienta . Broken down by age, 21 were between 65 and 70. 19 were between 71 and 80, and 6 were 81 or older. With regard t.o th priaery diagno, a2.o-of t.h patient.a 65-70 were diagnoaad neurological/neuroauacular or reapirat.ory. In th 71-80 age range, 87.5-were diegno .. d neurol09ical/nauroauacular or reapiratory and 100 0 the patient.a age 81 and over had t.b diagnoaea. Regarding t.b eec:ondary diagno .. a, 57.1* 0 patient 65-70 had diagno of 'other' and 28.6-had reapirat.ory dia9no For patient age 71-80, 57~1-had reapiretory diagno and 28.6 had cardiac diagno .. a, while 75.o 0 th patient 81 and older bad cardiac diagno Th diagnoaea aoat coaaonly leadint to being vent.ilat.or a .. iat.ed or patient age 6S-70 were neurological/neuroauaauiar at 55.6 and were evenly ap~ead over t.h other diagnoaea. For patient.a 71-80, 40.0 bad cardiac diagno .. and 40.0 had neurological/nauroauacular d1no .. a. The diagnoaea or pat.tent.a 81 and over were evenly diat.ributed between 'other' and neurolo9ical/neur~auacuiar et. so.o-ch. 76

PAGE 141

( ( ( Contraot S83-493S.O 000338 Th.l"~~h 0 ti on th ventilator rang fro 13 daya or petienta age 67-70, fro 13-2277 deya or patient age 71-80 and froa 27-1825 daya or patient 81 and older. For patient 65-70, 31.3 were on th ventilator or on to three aontha and 37.S for 12 aontha or aore. 0 patient.a 71-80, 37.S were on the ventilator or on to thr aontba, 18.8 for thr .. to aix aontha, and 1a.e or aor than 12 aontha. r.ity percent 0 patient 81 and older were on th ntilator or one to tbr aontha. Th Jority 0 patient in each category were on th ventilator 23-24 hour, with 78.9 of t.ba patient 6~, 68.4 o th patient 71-80 and 100 of the patient 81 and older. Th aa3ority reapon or tb expected length 0 atay on th ventilator were #until death# and ieti, totaling 84.2 or patient 6S-70, 66.7 for patient 71-80 and 83.3 or patient a1end older. Since the overwhlin9 aa3ority of patient have Medicare and Xedicaid liat.ad aa their payaent aource, breakdown by age are not that inoraative. cap YAM MY 0re about coat born by priyat snci and f0vo41t1901t Th data coliec:ted do not reveal anything about th coata. I thr1 yidanc 0t r1\top1n97 vot od? or un,uatiftd YA9t In th data collected, there ia no evidence 0 rationing or unJuatified u ... With regard to unaet need, there ia evidence in Table 6, page 42 of Sept .. ber report Cnow page 44J, of waiting liat ~or ventilator, and the need or funding nd appropriate chronic care faciliti to adequately a .. t the need of thia population. on Daa 24. you rfr to propri9tary inforaation that w111 b ried \o At& when Mr11aa1on 11 rctv fro Irvo0i, What,. t;he 1\1\v Pf \hiat MEt data alao rsvtd frg th otbE so1a10,1 YAY s0o\s\d, 1,1, f0\r Nad1c11, Aaerican Abbey IA Q1r and aua11~y car9t , A ~ollow-up call~ aade to Jia Retel at Travenol. He .. 1d that 1 th inoraation would be uaed in th public doaain, they would not want it.releaaed, becau their. coapetition would have ace to it. However, i th inforaation would be uaed atrictly internally by Congr, then they would rel--it. Inoraation waa requeated roa roater Kedical, Aaerican Abbey Ho Car and Quality Care by telephone, however no oraal requt waa aad due to th tiae liaitation becauae it would take aeveral week to receive approval fro the adainiatretion to obtain th data and then ~o actually receive it. Qulity Care did not have acceaaibl data and would have to conduct a aurvy in order to provide data. 77

PAGE 142

iri?~;~:;.!f~!~,.-;. ..... ;; .. ~."'.:.~~-.... ;-:-................. .. .. Ul .... -i4.w.i.-""-".: .......... ~~;~,;;..; ... :-, .... .... ; .... ~~-:~" .. : ............................ -.--.. ................................ ...................... ...... -~ ..................... ........ z r :. ,.} :i-' _: :/. I ( { Con~raat, 533-4935.0 1. APPIIIDIJ A. IATIOIIAL DATA IIVEIITORY UIT SUIVIY a, VBITIUTOR ASSISTID IMDIVIDUALi 4Mt AMIH&MPliU at 9lblla [QB !IIIMmB &ml! -WI, !I.a. -ll!lalll! 2. 0 th bow n, are cared for in the: A. hoapital Mt.t.ing a. hoa aet.t.ia9 c. otber a. llbat. ta t.b ... brNkclown oft.be aullbera iDCliaatecl ia caueat.ion 1, a. 17 or ,oua1er 18 64 c. 65 older 000339 4. Pl .. liat, bf -p-oup, bow m, ventilator depeadt patient.a r cared for int.la lloapit.al N'ttiDf: a. 17 or ,oua1er ----------a. 18 64 ~-------------c. 65 older ---------S. I* reiabur-t were ilabl for hoM rendered Mntilat.or aupport, bow UT, bf -poup, would be able t.o take adantat tbia1 A. 17 or ,ounger 11 64 c. 65 older 6. Wbet ia t.be ._..,. il&II total ch_... 'to u ia-tba-boapital _pet.itmt. oil. MDtilatort ----7. lfllat ta Ula ._._ 191\bl! tot.el ahv .. Crupirator, plua non-rpiratorp related> 'to aa intlle-bolle pat.tt. on ventilator! --... 71

PAGE 143

,~ ......... ,.. ....... -...~ .. ---.................. ....... ....... ...,....-...... ~~111&.C, ............................. ....., ........................ .....,, .. .., .. IW-...__,._...._W .. _J.W.._ ......... _.,_h~M-aoW.._ 11 .... .._ 1111 ._. 111 .. ------- ji?. ......... o . .,.,,.~::r\l."''i'.~r" 0 O0O34D f< ('&ill rau.otDli usrUG US REQUESTED 01 1985 tuJtYr. C!IL':: ... Pl .... 0011pleta for __. faoilit.r aurv.,.a: u 2> I> 4) S> 6) 7> ., t> 10) Id l&H (~-la nf_.... to Gueatiou 6 & 7 lfbat. COllpDMDt.a are !Deluded ill t.be c:bal-9! u.e. MDt.11ator. reapirator, t.heraptat. Yiatt.a, _,..., etc.> I / I n.u ______ Collplet.ed bJ _________ Telepbone ______ ,('', ... '\, 79 \ /(II)

PAGE 144

r.,rr:--: ....... ,_ ........ -. .. ..... ............................ w ........ ,.. .......... -... -.................................................................... __ '.-'"'. ( ( APPDDII 8. IATIOIIAL DATA IIIVIITORY MIT IIIVIY or VIITILAftll AISUTID IIIDIVIDUWI 1913 CDl.olaDO WICUT rult!DA ~IA IU.UOIS IIIDIAIIA !OlfA IAIIMS lllffllCIY IIAIII IIJIIIDOTA IJIIOIIII IIIITAU ...... -JDSIT IIIIC:O ...... TIIAI VDGUU PDIISYLVAIIA L&& gf .. ,. -yd DATA IIOT IIICLUDID II IDD DTIIATIS. eo 1915 AUIAIIA AIIICIIA AIIAaAS CALJFOIJIIA COIIIICTICUT FLOIIDA IIIDIAIA IOIIA IAIIIAI IIITUCIY IAIIACIUll..--11--s UIIUIID/D.C:. IICIIGAI IIIIIIIOTA 11a1PPI IUIOUII IICIITAU 1111 UIIPilllRI IIIIJDSII -TORI IORTII CAIIOLIIA IOITII DAIOTA OIIIO ....... ORIGOI PIIISYLVAJIIA IIODI IILAIID IOUTII CAIIOLIIA IOUTII DAIOTA TDII.ISII TIIAI VIIIOIT VIIGIIIA tlAIIIUGTOII 11ST VIRGINIA IIUCOIISII 000341 /f'/

PAGE 145

( {. APPENDIX C. NATIONAL DATA INVENTORY IATlOIIAL ORGAMIZATIOIIS lflx 1,c:w11a\ Arsn&w\&AP 00034:.! ASM1i GIE A999S11t&&en Aaerian Aaad .. y ~-F~ly Phyaiain 1740 W.at 92nd St.. Kan .. a Ci~y, NO 64114 (800) 821-2512 Aaerican Aaaoc:iat.ion o~ Reapiratory Therapy 1720 R .. al Row Dllaa, TX (214) 630-3540 CCHAS> Aaeriaan Coll .. o-6 Cb .. 1:. Phyaiciana 911 au ... Hi9bwy CAIU Park aid9e, lL 60068 (312> 698-2200 Aaerican Lun9 Aaaoc:ietion Aaeriaan Necliaal Aeaoaie~ion Depart.aaat Allied a .. 11:.h Bducation S3S Deerborn Cbica90, IL 60610 (312> 645-4697 Aaeriaan Nur .. a' Aaaoc:ia~ion. Inc. 2420 Prabin9 Rd. Ian .. Cit.y, a 64108 (816) 474-5720 Aaeric:an Oc:cupt.ional Therapy Aaaoc:ia't.ion 1383:Piacrd Dr. Suit..e 300 Roakville, ND 20850 (301> 948-9626 Aaeriaan Oat.eopat.bia Aaeociat.ion 212.B. Obio St.. CAie> Chiaa90. IL 60611 (312> 280-5800 Aaeriaen Pbyeiaal Therapy Aaeociation 1111 or1:.11 Faidax a1 .. andria, VA 22314 Aaeriaan Tborac:ic Society CATS> 81

PAGE 146

'i~tc~_. h ... ... .. ........ _, ,. .. .. .. ,. ~ ..... .. ..... ......... ... ,1 .. : ,,, Conuat. saa-4,as.o O O O 3 4 3 { APPENDIX C. t ( Crit.1cl Care Soc:iet.y Soc:ity 0 Crit:.iael_ Car Naclicin 223 laper1l Hi9hwy, Suit. 140 Fullart.on. CA 92635 (714> 870-5243 CAK> t.ionel A-.ooiet.ion 0 Naclicel Director 0 Reapiratory Care P.O. Box 10832 Cbicgo, -IL 60616 (312> 871-7SOO Nt.ional Inat.it.ut.ea 0 Hlt.h Nationel Inatit:.ut on A9in9 9000 Roclcv111 Pike t.bacla, ND 20014 (301> 496-9265 Viait.i119 lur .. a Alllaoaiat.ion 310 8. Nic:bi_9en Cbiaago, 11 &0604 Pr\&OD\ QiH9H-AtiM\N Aa999ia\i9n CHR, AU Aaaoc:iat:.ion. Ina. C:C> 185 Nediaon Avenue. Suit.a 1001 ew York, Y-10016 <212> &79-"4016 Aaeriaen Cancer Soc:iet:.y Diat.rict. o* C:Oluabia Diviaion 1825 Connect.icut Ave. N.W. lfaahingt.on,, D.C. 10009 (202> 483-2600 1740.Broadvay New .York, v 10019 (212) 245-8000 National Foundet:.ion or Lon9 Tera Haltb Car Dr. Paul Kerac:hner 1200 15t.b St.., N.W. Waahin9t:.on D. C. 20005 (202> 833-2050 Polio In~oraation Center Barrit a.11 S10 Nain S~., Apt.. A+I& Rooa9elt. Jalend, IIY 10044

PAGE 147

-~-~f~':~~ .. L. ;_/; .... :, ..... -" ....... : .:; : ; .:- 0 .. ......... {f:, ( ( (. APPi.DIX C. 1 .. piaare a521 1061:.h ,t Cbic:a90, IL AEn4a\49P tlNlipg AMI \b E1derly Actainiat.ra~ion 011A9in9 General Ini'oraatioa 330 Indepeadenc:e Ave s. w. Weabin9toa. D. C. 20201 (202> 472-7257 Aaerican A9in9 Aaaoc:iation Univerai~y of Nebraak Nedical C.ntr Oaeba. II 68105 (402> 559-4416 Aaeriaan Aaaociation *or International A9in9 1511 Ks~ 1.w., Sui~ 102a lfaabia9t.on. D.C. 20005 <202> 688-MUS Aaeriaan Aaaoaiation o* Ho *or th A9in9 1050 17th St., N.W. Suite 770 Waabia9to11. D.C. 20036 (202') 296-5960 . CC> 335 Nadiaon Ave. ew York, Y 10017 (212> 503-7600 220 Cent.rel Park Sout.h, 11A ew York, Y 10019 (212) 582-1333 Aaariaan Loa9J.ty AaaocJ.ation 1000 w. C.raon St.. Torrence, CA 90509 <213> 533-2220 Federal Couaail on A9in9 200 lndependenc::e Ave., s.w. llaabingt.on. D.C. 20201 (202) 245-2451 CAJU Lii'ecere SSOS Central A Boulder, Colorado 80301 aa 000344

PAGE 148

( '. _1,_, ... .. APPEJIDIX C. Ccont.inuecl> t.ionel Council on th A91n9 600 Mayland A S.W. Weat. ,u. 100 llaabi~on. D.C. 20024 (202> 479-1200 Rellabilit.ation b9ineeria9 Progrua llort.b'"!Nlt.enl Univera1t.y School 0 Neclicine NS Superior Cbiaa90. IL 60611 (312> 649-a560 National Geriat.riaa Society 212 w. Wiaaonain Ave. weuk .. WI 53203 (414> 272-4130 Pcu,aSr&M '"''" w&\b bfflMa Ac &at.it.u;t.iga Aaeriaan Coll .. 0 H .. lt.h Care Adainiatret.ora 4650 8aat hat Hi9hway -P.o. ao. saeo letbeada. ND 20&14 cao1> 02-a3e4 Aaes"ican Hoapital Aaeoc:iat.ion a40 N. Lake Sbor Dr. Cbica90, IL 60611 ca12> 2ao-eooo 000345 Coaai .. ion on Prd .. aional Hoapit.al Act.ivit.i .. lllinoia Aaaoaiat.ion d Rehbilit.at.ion Fcilit.1 206 S. 6t.b St.. Sprin9ield IL 62701 (217) 753-1190 CAK> Joint. Coaai .. ion on Acc:reclit.at.ion 0 Hoapit.ala 875 Niabi9an Ave. Cbic:a90. IL 60611 (312> 642-6061 CCJIAS> t.ional Cmat.er 'or a .. 1t.h Servic .. Re .. arch Rooa 8-50 a Federal Cent.er Building #2 3700 Raat.-W..t. Highwy. a,t.tavJ.11 11D 20782

PAGE 149

.... ,. ( ( APPUDIX C. CCIIAS> t.ionl Cent.er 'lor H .. lt.h St.et.iat.ica Faderai Celltar 8u!ldin9 #2 8700 .. at.-lleat. Hitbway 8yat.uv111e. o 20782 (801> 436-7035 Cd> Vetwaaa Acllliniatrat.ion llort.b Cbia.90 VA Hoapit.al (312> &aa-1900 Vet.erena Adainia1:.rat.ion 810 Veraont A .w. Waahin9t.on, D.C. 20420 (202) 389-3781 N Qar 4aaog1at19a CAI> Alleriaaa Aaaaciat.ion *or Continuity o~ Care Nort.bweat.ern N .. orial Hoapit., Chicago (312) 908-3335 Aaerican Fad.rat.ion o~ Hoa Health A9enci -Suit.a S-605. 429 I. St.., S.W. Waabi119'ton. D.C. 20024 <202> SS4-0S26 00034G CAI> a .... bly fd Aabulatory and Hoae Care S.rvic .. Aaerican Hoepit. Aaaocition a40 Lake Sbore Drive Cbic, IL &0611 CAI> lllinoia Continuity d Care Organisation Nt.ional Aaeocit.ion *or Ho Cere 519 c St., N.8. Waabin9t.on, D.C. 20002 (202> 547-7424 CCHAS> tioaal. Foundat.i.on *or Hoapice and Hoa Care S19 C St.., Stanton Park W.ebin9t.on, D.C. 20002 (202) 547-7424 419994AA&0n 4Nl&M w&Sih itsva\&Y &\ll\ro1t&y de11yary xt.n Cd> Aaaoaiatioa 'lor a .. 11:.11 Cu- Coalition lloapit.al lneurnce Aaaoc:iat.ion o6 Aaeric, Chicago (312) 322-Ga30 -

PAGE 150

. .. .. 000347 &PPDDIX C. -*or Dll8 eador Glaaarock Ho Care CAIC> <404> 2&1-0309 or 433-1800 x242 Tra,renol Traacare ... piratory Hoa Service ... C.abrid9 Dr. 11-Grove Villas-IL &0007 (312> 952-8836 Foat.er N~icel 5350 Mc Deraott Drive lerkelV 11 60163 (312) 344-4777 Ms ffl\b ear PE0xA4v Aaaed 1215 S. Harl .. Park F'or .. t.. IL 10130 Aaerican Abbey Hoa Care Chic::a90. IL Hoa.care Aaaoc:iau.. Ltd. (312) 941-7795 UpJobn 2605 B. KiJ.-e Rd. Kelaaaaoo. Bl 49002 (616) 342-7087 Qualit.p Car 100 N. Ceater Avenue Rockville Cent.er. N.Y. 11570 (516) 678-3200 f1nanc1a1 AEsoAM\APP Blue Croaa Aaaoc:iation 233 N. Nichi9an Cbica90. Il 60601-5655 (312> 938-7500 Departaeat d a .. 1t1a end Huaen Sarvic HCFA Cbic::a90 R .. ional CH'~ice 17S II .J'ac::kaon Blvd. Cbica90. IL 60604 ,,_ \ /~l

PAGE 151

. ;.._ .. .. ,-u., ---"- ........ la ....... ,., .... ....,. ............................ ,, "-- ....... ............ -...... .. .............. 0 ( ( Coauaat. saa-4935.0 APPBIIDIX C. 1 .. 1th Care Flnencin9 Adainia1:.ration 200 Indapeacl~ ~.w. V.ebington. D.C. 20201 (202> 245-6726 1 .. 1th rnauranoe Aaaociat.ion Aaerica (312> 332-0800 332-0800 a .. 1t.h Inaurance Council 0 Aaerica Illinoia Depertaent. d Public Aid 981 a. IJeahingt.on St.. Sprin9lield. IL 62763 Illinoia Depart.aent d Rehabilit.etion Servicea Sprin~ield IL 62763 CAIC> Neclicare-ec11ceid hpart.aent. a .. 1t.h & Huaan Sericea a .. 1th Car Finance Adainiat.rat.ion w .Jac:lcaon Blvd. Chica90. IL 60604 (312) 353-3822 000348 ------........... --~-----~----------411119--.-,--~---~------......... _._._, _____________________________ __ Pl .... ote: Abbreiationa prior to iaat.it.ut.ion n .. reer 1:.0 peraona r .. ponaibl Eor cont.act.a: AIU CBAS: HR. CC: Ann.lCot.erla Tb Cent.er for llealt.b Adainiat.rat.ion St.udi Howard Robboy. Ph.D Candice Clark. Ph.D. 87

PAGE 152

( ( (. APPDDIX D. OFFICB OF TBCIIIIOLOGY ASSBSSIBIIT VDTILATOR ASSJSTD IMDIVIDUAL SURVRY &TIOIIAL DATA IIIVDTORY .... 000349 Th Cent.er or a .. 1t.h Adain1at.rat.1on studi .. at Th Univeraity d Cbict190 J.a concluct.J.119 aur,,ey peraona 65 and ovar on prolonged aecbanic:al YeDt.ilat.ion -6or a report. by t.he 0c o Technology .. t. COTA> t..o Coapw. Tb aubJec:1:.a Uia at.udy are peraon as and over who ba .. required aec:hanical ... 1atance or brNUia9 Cart.UicJ.al ,,..tilat.ioa> at. 1 ... t. 4 boura per day ewer at. 1 .. at. a t.wo week t.1 .. pariod. ORGAIIIZATIOII IITIIRVIINU ------------------------------~-------~~~-ADDltmlS .... ---------~---~ ................... ___________ __._..._ .... -----------------------~-~~----------------~-~~~-TILBPBOIIE < .. ~> ------~-..-. ... ------~ ........ ----------Y .. ____ CGO TO QUISTIOII 2.> o _____ ,_ 2. What. kind~ ild'oraation do you hav! ---------------------------------------------~--------~---------------....... -----~~--------4at,-------~------------...... ~------.... ~~-~-----------------~--------~------~----~---------~-~ ~-~---~-w____,__ _____ ___,.._. -----------------~~~.....-~-~ ........ ', \ .. ....

PAGE 153

2. Paaarl: Doe your deu cont.a:ln > Doea your dat.a CODt..in ny diagnoaia ildoraaUon't b> Doea your dat.a conuin any ini'orat.ion OIi 1:.b aaaber d daya and boura per dy t.b individual baa been or aigbt. be on a eat.ilator! c> Doea your dat.a cont.ain any idorat.ion .a.out. t.b aourc:e payaent i'or aervicaa! d> Doea your dat.a conuin any 1doraat.ion about. t.b c:oet. or aaouat. billad i'or tlle .. iadivlduelat y.. llo 1 2 1 2 1 2 1 2 ( 3. lfbt. would be raquirad t.o obuin the .. dat.a on VAI i'roa your C ~11 .. ------------. ----------.. _...._........__._..,_,..._,,...,___,.._ _, __ ~----------~~~~-----------------------------------~------~---~-~--------~~---------~-------------~-.....------~~~~-----~-~~--4. Bow long would it t.ek to obui.n t.bia imormet.ion! ~-------_,........_ -------..,_~ .... ._... .. __...... ....... _______________ ....,_ S. lie-, INIIIY Vent.ilet.or a .. J.ated IndiYiduala bav you 1dmat.ii'iad1 &. How a.ay oi' t.h ... VAI er 65 and oldaz-1 ., 1S-o

PAGE 154

.................. ., ............ ,. ,, ........ ,.,._ &.,.,., .,-.,-l,..,,......,...,~.,-........w .... -......_.~.,._,--'..,..,,w ..,.,.-.,w......,......, .. ....., .. .,_,_,,........,......,.._..,...,......, ................ ...,.,....,. ....,......,.__,,,,,..,_...111,_.....,...,.._.._,_, _____ .....,._ .,, ................ ... .. Contract 533-4935.0 000351 7. ABK OIi all 8D FOi FIWIIINB ltFIJIIITION, lF AVA1Ull. llllt i1 thll 111 ,_. Ndl Wll II INI Mrl bi.,,_ 1> PMlllrY diagnaais, bJ IIICOndlry diagnosis, Ind c> u. ill11111 ftlCISSitati111 wntilatar -inm1 u. mt slhl i1 111d a of taday, thl VAi' H Un days) an wntilltcr CVUJS>, ti Un ""' par u,J wntilltar (MIi), npadld ldditional ti Cin days) an tM wntilltar CEVLOBJ, apadld pa,-._,. naa UST Clll1E II.I. TIIIT APPLY),. and if poaiblt, l'ICGl'd the propariian paid by the ....,.:ti IOftll. !Bl 811 a~ IIII I.II. ml mm PfMQI' IIIQS (days) (hours) (days) Nldicare Nldicaid PrivlH FUy Othr l......a CRCIFY) EIMPLE: 66 1)aJID laJ 5 4 14 1 2 3 4 s b)!!ln!Pftil cupp '~-,.,_ ,., m (j) J 1) 1 2 3 4 5 b) cJ (j) ,.,_ ") -C.) (j) 2 ., 1 2 3 4 5 b) c> (I) ci,_ ,., ,.,_ <,)_ 1) 1 2 3 4 5 r: b) c> C,) c.,_ c.,_ (j) (j) -- ., 1 2 3 4 5 IIJ c> ,., no_ ,.,_ ,., Cl) aJ 1 2 3 4 5 b) cJ ,.,_ (j) uu c,) -(j) 6 1) l 2 3 4 5 b) cJ ,., -Cl)_ ">m m -7 1) 1 2 3 4 5 II> c) (j) ,.,_ ,.,_ ,.,_ (j) -I 1) 1 2 3 4 5 b) cJ (j) ,.,_ ,.,_ ,.,_ m 9 1) l 2 3 4 5 b) c> (j) -c.,_ ,.,_ ,., -(j) (~ .90 ~I

PAGE 155

.- '., ,,_\, ..... ; .......... .............................. ...... "" ........ -.... ..... -.w ..... -... .............. ..... .. \.~,---" ......... ,.. .. .... ........ .............. \ ...... ... l ,. Coatrect. 113-4935.0 000352 ( 7. ... 1...0 llallll lllI Ill HI mm PfmENTIPID (days) (houri) (days) llldiCIN Nldiclid ~ivat F111ily 8'hlr lftlUNllCI CSPECIFY> EIIIUa 16 IJCDID 1a, s 4 14 l 2 3 4 5 Mf!!l--il cHDID ,.,~ ,.,_ ,.,_ ,.,_ ,.,_ 11 1) 1 2 3 4 s Ill C) ">-.,.,_ C,)_ C,)_ c,u -11 ., 1 2 3 4 5 II) C) c,u -C.) ,.,_ C,) ___ no 1) 1 2 3 4 5 IIJ cJ ,., -C.) (1')_ C,)_ Cl)_ 13 1) 1 2 3 4 5 II) C) Cl)_ C.)_ ,.,_ ,.,_ ,.,_ ( 14 1) 1 2 3 4 5 II) C) cs,_ ,.,_ c1u_ c.,_ ,.,_ 15 ., 1 2 3 4 s .. C) C,J (1') ,.,_ ,,,_ cs,_ 16 ., l 2 3 4 5 Ill C) cs,_ ") -Cl)_ C,)_ ,., -17 1) 1 2 3 4 5 la) C) Cl)_ no_ ,.,_ ,.,_ no -11 ., l 2 3 4 5 b) c> ", (1')_ Cl)_ ,.,_ Cl) 19 I) l 2 3 4 5 II> C) ,.,_ (j) ,.,_ ,.,_ cs,_ aJ 1 2 3 4 s (",, II> c> c.,_ C.) ,.,_ c.,_ cs,_ -CIF IIJIE IME 18 NEEB, NAICE BlnCNL alIEB IF THIS P&. > .91 /.>eJ-

PAGE 156

'~ 9. ( ( 000353 What., 'Eor an in general, do you think ar th lor iaauea in caring elderly individual on prolon9ed aechanical ventilation? --~~---------~-~---~~-~---~--~~~~--~~----------------~-----~ -~~-------~---~-~------~~----~---~-~---~-~-~------~------------~--~--------~~------~-------------~---------~--~~--~---~-~----~-~--~-~~-~~---~--~~-----~-----~----~--~----~~-~----~~---~-~------~---~-------~~---~~-----~--~~----------------Are there have data any other organization on thia population! that you know 0 that aay Yea No NANE~~-----~--~~---------~-~~------ADDRESS ____ ~--~~---~---~~~--~-~------~~----~--~-~-----~--~-----~----~TELEPHONE __ ~------~~--~--~--~-----~ THANK YOU FOR YOUR ASSISTANCE! Int.rviewer Dat. \92 /5)

PAGE 157

' ~-~ .. _.."-..,' .. ,~ .. l--~ ............... ;;~:;..;." ........ ..... ....,. i ............. ~::-..,., ........... ,, ..... ......__.. .. ,'"'!',,.fi....... -.~,,~--......... S: -.. ......... .................... ....................... .......... ............. ......................... ........ -... ff"<'v~ ~, "-(:r .. i; >' : ~'. ( ( (:: APPDDIX a:. RBGIOIIAL ISTITUTIONS CASK STUDIES LA\ Af Ipet,i\y\igpa Boeton Univeraity Hoapital Gaylord Hoepital Neriden-W.llin9*ord Hoapital Goldwater N .. orial Hoapital Betheacla Lut.heran Hoapital Ranc:boa Loa Aai9oa Crei9ht.on Univerai~y Hoapital 0002-5-l T Inatitut.e ~or Reaearc:h and Rehabilitation Baory Univeraity Hoapital Univeraity o66 Wiaaonaia Hoapital St. Nichael' Hoapital. Toronto .-. 93

PAGE 158

!fl!ll!!J' .. _~!lf!M_f._Jl,Mllilll; .._.,.__..,.,..~,._-, ____ ~,....,,_.-.. __ __.._.._.,.., 11~.~ .--' ii --_.._,..,_. --------------~-~---:~ .. .. ~:, tli, .... I' OFFICB Of" TBCHLOGY ASSBSS~ENT vIITIUTOII ASSIST&D IDIVIDUAL SURV8Y RSGIOIIAL 1STJTUTIONS CASE STUDIO DATA INVENTORY 000355 Tb c.at.ar *or a .. 1t11 Adaaiatrat.ion Studiea at t.be Univeraity o~ Cbia .. o 1 conducting a aurey of'paraona 65 and over on prolo~gd aacbaaiaal vaat.ilat.ioa :for report. by t.b O:fi'ic:a o'6 Tec:lmology a ........ t. t.o eon..-. ... Th aubJect.a o:f t.hia at.udy are peraoaa 65 and over wbo b required aec:banical ... iat.anc :for br .. t.b1n9 at. leaat 4 hour per day over at. leaat. a t.wo IHNllc t. .. period. 1. Ar you able t.o provide in*oraat.ion on t.h .. individual who were patient.a in your :facilit.y.:for all or part o:f tb pariod (". fro ayayat. s. 1111 t.hrough 4y9yat. I, 11ast c: Yea ______ lo ______ 2. In t.he waek froa &yayat. 5 through Aygyat. 9. how aan, Ventilator A .. iat.ed Individual were cared :for in your inat.it.ut.1on1 3. How aany t.he .. VAI are 6S and older? ... \ \ /. /5'}

PAGE 159

Cont.rac~ saa-4935.0 00035G ( 4. ua tM ,., adl Ill 1111 ..,, 11 ,,_,, 1111119i-. M a_, G11ru1-. 11111 d tlla ui.. ( Fl 11tuti11 Wlllillltr-tllsi ... 81111 la .. 11111 ., a 1 IL :r ...... tilll Cia .,. Wllti... N.a la ,_. illliwH-. till Cia ..... par dlyt I ..tUllar NIii>, ...... lddiHCIIII till fia .... 1111 -*illllr aa, t 1111 PIP, l -1.111 CClm.E AL 11111' IIIILYJ, 11111 if ..-1M-. .....a tlla '1 IJ ll'IMll lllill lJ tlla I I HW II S 111 DJ? EIIIU1 II 11a111 .._ __ ..,,_ te cHR 1111 Ill Ill II.II ..,.. ..... ....,., lal s 14 1 ____ ... ____________ .., ___ d ___ ____ ... ____________ .. ___ d ___ ---.-ill ____________ ... d ___ ____ .. ____________ .. ___ d ___ s, ______ ., ____________ .., ___ d ___ '---.-i-------------... ___ ct ___ ______ ., ____________ .. ___ d ___ 1._ ___ .. I"""" _____________ .., ___ cl ___ ,. ______ .. ____________ .. ___ cJ ___ 9S F111ily CllMr lsaa CIIIECIFY) I I 3 s __ CII_ CIJ_ Cl>_ Cl>_ cs,_ I 2 3 s __ CII_ CII_ Cl>_ cs,_ m_ I I 3 4 s __ cs,_ e11_ CS>_ cs,_ cm_ I I 3 4 s __ c11_ ,.,_ ,.,_ ,.,_ m_ I I 3 4 s __ ..,_ cm_ cs,_ cs,_ cs,_ I I 3 s __ cs,_ ,.,_ CS>_ cs,_ cs,_ I I 3 4 s __ CII_ CII_ CIJ_ CS>_ cs,_ I I 3 4 s __ CII_ CII_ cs,_ Cl>_ cs,_ I I 3 4 s __ CII_ CIJ_ Cl>_ cs,_ CIJ_ I I 3 4 s __ CII_ CIJ_ Cl>_ cs,_ cs,_

PAGE 160

: ......................................................................................... ----~ .............. ................ -.................. ~., ~ .. -. ......... .. --.. .......... .. -. ........... .. -:.,., ,., ... ~.,..__,.._ .. ... ... ,., ... '" ... ... -Contract 533-4938.8 000357 ......... r' ( l'l ..... IIIL I.II Ill -.. ,., ..,., ..... ....,., -..tan ... ill Priwla .... CIIIECIFY) --a I 14 I I J 4 I 1111 II ... --CSJ_CIJ_ cs,_ I I J 4 s Ill eJ ..,_ CS)_ ..,_,.,_ cs,_ 11 ., I a 3 4 s Id eJ cs,_ ,.,_ ,.,_,.,_ w_ II. ., I a 3 4 s Id eJ -cs,_ ,.,_ ,.,_ cs,_ -I I 3 4 s M eJ -cs,_ CSJ_CSJ_ cs,_ 14 ., I a 3 4 s (. Id e) -,.,_ ,.,_,.,_ cs,_ II ., I I 3 4 s Id e) CIJ_ ,.,_ ,., _cs,_ cs,_ II ., I 2 3 4 s .. e) "'-,.,_ ,.,_,.,_ C,)_ 17 ., I 2 J 4 s Id I) ..,_ CSJ_ ,.,_ ,.,_ (SJ II ., I 2 3 4 s Id I) -cs,_ cs, _,.,_ cs,_ It ., I 2 3 4 s Id el -
PAGE 161

~! .. ................................... ................ ............ ~-4-........... \ ............... .-... ,:, .................. ............................ ........ ..... ... _., ( ( 000358 s. ~ ta uae approat .. u aaount. billed per day ~or t.b elderl7 VAia in-~our ayat.eat -----------~------------------- la t.11 paat. aoat.b Ila .. t.b nuabera 0'6 VAZ in your a7at.ea 61 aacl ewer., ........ dearNeeclt or at.ayed about. t.b .... CCllacl Oll8> 1aar .. aec1 ___________ 1 o.ar..... ____________ 2 ~red about. t.be .... _________ 3 7. Do you t.11.iak ~t. int.be a .. t. aix aontba th nuaber o~ VAI in~ ayat.ea U mid oer will .inc:r .... deer .... or at.ay alNMI~ U.. --t Cc:BaCK 0118 > Pl .... explain~-baa.la ~or your .. t..i~-laar .... __ .;. _____ 1 .. ----___________ 2 __________________ 3 DPLAI------------------~------------~--------~-----~---~-----~--~-------------------------------~---~---------~~~------~-----------~---------------------------------------------------------------------------~-------------...,--------------------~-------~-------~ ~~------------------------------------------------------..----------97

PAGE 162

( ,. in ........ '6or pleoia9 an la~ opiai-. wllet. _.. t.be elderl7 .,... ... oa ,,..t.ilet.or ot.ber p_,,....t CCIIICLK ALL TUT APPLY> ~hen *or li'6e-.. vi119 00035~ -bl pat.i .. t. t.o oont.inue product..! 1~ a ... t.ient. baa pproprit.e oover or reiatnar ... ent. a d. pat.lent. 11 .. r .. eoabl level -6 ... u1 aoapet.eaoe 4 OtlMlr CDPLAl>S ---------------~---------... --------------.-...-------------------------~----------------------------~----...................... ~....---------------------------_________ ,........ _________ ...................... ______________ ~---------------------------------------------------------------------~-------------------------............... ----------------_,.,.... ________ .._. ......... ___..... ............... ..._....._ ............ ~------------------------------------------------la ~our opinion. wbt. prol0119ecl eat.ilat.or i t.b aoat. eppropriau ddinit.ion dependenayf ------------------------------------------------------------------------------------------------------------------------------------------~----------.. -----------------------------------------------------... ---------------------------------------~---------------------......_---.. ---------------------------------------------~---~-~-~--~------------------------~~-----------~----------~------------------------------------------------~-----------~------------------------.__-98

PAGE 163

. ,' ,, t. 10 11. ------, .. lo -------, .. CP1--9ie ua t.be -- aclclr ... ..ca u1eplaolle nualter fd t.b perecma t.o ooaMIClt ~or tlai ildonaat.ion. > ... ______ -------------------'al----ADDRm _______________________________ ___________________ ,..._ ___________ ,.... ____ --------------------------~------~--~~ T81.UB0118 ___________________ clcll.t.ionel a.a .. u bere. -----------------------------------~------------------------------------------------------------------------------------------------------------------------------------"------------------------~-------------------.-------~-----------~------------~-------~--~---~-------------------------........... ___ .......,... ____________________________ ~-----... --------------------OPTIGIIAI.I ----------------------------------~------~ .... __________________ ~-.-.---------TITLa/POSITIOll ___ ~-~----N--N---N---~-----"---"---ADDRm ____________________ __________ ., ____ _______________ .. ------~----------~------------------------------~ ,...... ... __________________________ ___ TUIIIC YOU FOR YOUR ASIIISTAIICal ...._ 99 \ I~

PAGE 164

( ...... .... .,. .. .......................... ............ ~ ................. -................ _. 'h".. ...... .............. -......... -.. --.. .. Cont:.raat, 533-4935.0 000361 APl'EJIIJiY G. RBGIONAL IIISTITUTIONS CASB STUDIES IMEY91 af YM\41;t.gg-PeMP4M\ fHMP bv \b ls;hy\\ Dvgig 199&9\Y pd \b 6RRic;an Lyng Aaapgia\igp A( ...... H1iHe JMM, 1ff3 Def'init.ioa o* Yellt.ilet.or-dependenc:y: A pet.ient. who required aeabaaical ventilation *or or t.ban t.br .. weeka. T~t. nuaber d inat.itut.ioaa keel t.o participat.e: 130 Acute and cbronic care boapitala 120 Long tr car Eac111t1 1 lo car coapeni 9 R .. pon .. rt: 82.0ts Tot.al awaber VAia identi~ied: 147 diat.ribut.ion: Age Total Percent in y .. ra Nuabera (ts) < 1 -~--9__ 6.1 l 15 ____ s __ __3.4 16 53 --~35--_23.8 54 69 __ so~ _34.0 > 70 ---"-_32., Tot.al _147_ 100.0 Tfpe 0 Inatitution Total Nuaber Percent 0 Pat.tent.a uo At boae __ 20_ _13.6 Chronic boapitela __ 33_ _22.4 Lon9-t.era cr Eecilit.y ____ 3 __ -__2.0 Acute care boapital __ 91_ _62.0 Tot.el _147_ 100.0 100 I~/

PAGE 165

'!'..................... ...................... ,.,. .... ...... _, ..... ........ ,,_.,.,._..., ....... I .-. \ ( eonw.at. saa-4,n.o APPEIIUIY TJ'pe Aout.e Hoepi"l Unit. Geaeral aeclical-aurgical __ 38_ ICU. CCU or ot.ber apaatalisad c:ar unit. __ 53_ Tot.al __ 91_ Diapoaea Tot.al _40.0 _60.0 100.0 ..... Nuaber A9 1. Chronic obatructiv lung di ..... 2. Aayot.ropbic lateral acleroaia 3. Spinl cord inJury 4. Cent.ral aerYOUa ayatea diaordera cva. lnt.racrantl b .. orrh 5. Otber a~oauaauloakelet.al diaordera Nuac:ular dyat.rophy a Old polio 2 ScoJioaia 2 Guillain-Barra 1 &. Adult. r .. pirat.ory diatr ... aynclroae 7. In~ant r .. ptrtory diatre .. a. Balipaacy 9. Pulaonry in~ect.ion~ 10.0ther C:.rdiac 4 _4!928_ ___sa __ __ 1a_ __64_ ---7 -__ 44_ _12_ __54_ __ 1a_ __ 41 6_ _57 ........ 4 .. --....... 6,_ __ 74_ __ 10_ __ sa ..... 20 .. .... 58 .. 0003G2 lxt.rapolatiOli to t.b eat.ire at.ate~ Na ... cbu .. t.t.a baaed upon 100. rather't.han 8211 r .. pon .. rat. yield 162 ventiltor depandent si-raona. laaad on t.be r .. ulta not.ad int.he above atudy. t.h incidence in Ne ... chu .. t.~ would be 2.a,100,000. Applyi119 t.bia .... t.bod t.o t.h entire U.S. population <233. 981.000~ July 1983> yield vent.ilet.or population .. tiaated at. 6573. ------------~---------._,..~---------49----------------~---I -~-----___ ...... ___________________ ,_ Th ... dt. were contributed by Barry Nak N.D Boat.on Unieraity School d BacU.cine and Cbatraan. BTS Lon9-Tera Care Coaait.t. ... 0at.ober a1. 1983. Coaputationa o parcent.a9 .. ar by Suaea Dumair JI.A .. Ra .. arc:b Pro3ec::t. Aaaiatant. 101

PAGE 166

f~ .... ~jila-... ~.....i:.----------.. ..: .. .;;.._.-_-----~r.-~-...:....;w. .... ____ .. ___ .;,. .. ~.,..;..,.,.......,.,.,,,.---------.-----( ( ( .\ APPEIIDIX H. REG?OIIAL IIISTITUTIOIIS CASE STUDIBS I\M4Y 91 YAie An M JP\MY ear. Va&\ ., 9:en'4&a Beui\i, 1w-1w All VAI Pat.ient:.a On Ye11t.ilat.or < 7 daya Ga eat.ilator > 7 daya Tot. VAI Pt.J.ent.a 65 and ewer On ent.lat.or < 7 dY OIi ,,..t,ilat.or > 7 day Tot.al Tot.al. Nuaber 909 109 1018 Total Nuaber 300 46 346 Percent. 01) 89.3 10.7 100.0 Percent. Os> 86.7 13.3 100.0 000363 -----------------..-------...----~~~---------------~-~--------.------.i,--~---------~--~- Th ... dat.a were cont.ribut.ed by Rober1:. Byriclc. N.D Direct-or~ I.c::.u. St. cbael1 Hoapit.al,, Toronu,,, Ont.aria. .... \ 102 I

PAGE 167

--tit Y ft ii C MM rt ,. ,':-' care for Lt fe Colltnct 533-4935.0 LIFE SUSTAINIH TECHNOLOGIES AND THE ELDERLY PROLONGED MECHANICAL VENTILATION ... .. .... I I : TASK 4. OUTCOMES OF CARE October 15, 1985 Prepared By: Augusta Alba Robert John Byrick Allen I. Goldberg Frank J. lnclihar 61n1 Laurie Margaret Pfroaer .. '"\ \ 00{)?~, .... \. '-j

PAGE 168

~!,,., ............. ~ j l ,.-, ;:. I I ,;.,:. ... rt r re 1 r r r 't 4, '~, ::','~ ~ ,: ~:f .. -'-~.JI., ,'_J p,., "' t,,' ' .. ,, o .,.,~ ,, I : ...... ,"f' .. '.;,,f,.: 1. .... ..., '': ( C Contract 533-4935.O 006 TABLE OF CONTENTS OFFICE OF TECHNOLOGY ASSESSMENT LIFE SUSTAINING TECHNOLOGIES AND THE ELDERLY PROLONGED MECHANICAL VENTILATION Task 4. Outcomes of Care A. Medical Outcomes B. 1) Survival studies 2) Detenninants of survival 8 3) Physiologic effects of mechanical ventilation; prognosis, need for further care 15 4) Rate of survival, death; dependency on chanical ventilation; degree of dependency 17 5) Impac~ on functional ability 18 6) Technology: safety and risk 2O 7) Medical outcomes at Goldwater 21 Social, Psychological, Economic Outcomes i I 1) Psycho~ocial outcomes ............................................................ 25 2) Econoa1i c outc0111es ....... ........................................................ 28 3) The consu111ers1 view .................................................... 3O 4) Another perspective ............................................................... 47 5) A final c011111entary about the_psychological effects on caregivers and family and the impact on dying ......................................................... 48 References ..................................................................................... 51 ....... I:{

PAGE 169

C ;..,. .. Appendix A. Appendix B. .... ... APPENDICES Outcome of Respiratory Intensive Care for the Elderly California Health Decisions -Involving Citizen in Health care Choices \ ....... -...... ----................. .. :./T.~-~77~--.. -\ -... '. "., 000366

PAGE 170

;'~ 1no,e tittft" 1p11:1,:r e t uw, 01111 uu u 1, 1utsr~ .r ,,.,x ... .......... -......... .._ --(. (~ OTA Task 4 Contract 533-4935.0 LIFE-SUSTAINING TECHNOLOGIES AND THE ELDERLY PROLONGED MECHANICAL VENTILATION TASK 4. OUTCOMES OF CARE A. MED I CAL OUTCOMES 10/15/85' OOOZ67 1-The questions raised by OTA about medical outcomes have been answered by three knowledgeable and experienced physicians with different perspectives: Dr. Robert Byrick Critical Care Physician (Anesthesiologist). Authority on dical outcomes in an acute ICU (St. Michael's Hospital, Toronto, Ontario). Dr. Frank lndihar Practicing Internist/Pulmonologist. Innovator of long-term respiratory care unit at a large metropolitan medical center (Bethesda Lutheran Hospital, St. Paul, MN). Dr. Augusta Alba Physiatrist/Neurologist. Authority on long-term respiratory care the pioneering Howard A. Rusk Respiratory Rehabilitation Service (Goldwater Memorial Hospital, New York, NY) Since each original response has had a different emphasis, they are pre sented in their entirety; the report also incorporates c011111entary from other physician contributors to this project. The issues are first put into excellent perspective by an extensive review of the literature by Dr. Byrick. 1) Survival Studies (Byrick) \ Historically, studies of the medical outcome of intensive care have used mortality as an end-point. The early reports of ventilatory care in special-; ft~-------. --~

PAGE 171

'Pl'"tj9',trt ...... llb,1l 1tttd1_,.w tthltlt b!Da,atMtit ihli'-ld tia .. wl;~.,.,.:.~i.1..aw-..i?awW..,..aQkJ"M"""' .... .a.,~tdhlldM143M:MlittNWW'~natJ.-Qr MtU -HNP?Nlllt(N NIii h~ .... -.... """'" tllWWWWUWM ~w ....... _. ............. .n .. .. :i-',' (' OTA task 4 10/15/85 Contract 533-4935. O -2 -0 0 0 3 6 tJ tzed units (e.g. polio units) were highly successful in saving lives (1, 2). This technology ~volved and improved _(3) fn response to increasingly more camplex clinical problems. In extending ventilatory care to groups of patients not previously ventilated, the outcome of this therapy has not been critically evaluated 1n controlled, double-blind studies. The polio survivors were often young and otherwise healthy, resulting in an invariably tmpre$sive outcome. Durfn9 the 1960's and 19701s1 studies (4,516) were performed on the outcome in adults after respiratory failure. The outstanding features of these studies were: 1) the mortality is high in patients with multi-organ failure 1n spite of respiratory care (25-501 range); 2) the elderly (aged over -. 65) have a higher mortality rate than younger patients; and 3) prolonged ventilatory care is highly effective for many patients with single organ failure resulting in respiratory insufficiency (e.g. neuromuscular). Empirical (7) evidence exists thdt ,espiratot) intensivP. care .n adu" cases of respiratory failure decreased both morbidity and mortality in specific disease processes. However, because of the presumed efficacy of ventilatory _care by clinicians, no randomized prospective controlled stud. 1es have been perfonned. In the 19701s, increased health care resources were expended on medical (8) as well as surgical (9) intensive.care units. Studies have evaluated costs of care (8,9.10) and the therapeutic interventions (11) used in critically-111 patients. With the increasing complexity of the clinical states treated I I

PAGE 172

..., .. _, ... ...._ .... ._.__,_..,.._ ___ _.........., ________________ _....,. ..,.,,11oo""'11oowM_._,..,...,_,,~wwww..,.--..,..,. .. ,. .... .. ___ .~( (_ OTA TASK 4 10/15/85 Contract 533-4935.0 3 000~:; in fntenstve care, a new set of probls made these studies difficult to evaluate. Firstly, ny patients, especially tn dical ICU studies (12), were never chanically ventilated. Thus the outcomes of these studies of intensive care do not specifically relate to outcOllle after ventilatory care. This denotes a change in the clinical concept of intensive care, from a specialized unit concerned with respiratory failure and associated illness, to a unit treating all the critically-ill patients in the hospital. Secondly, these studies (8-12) represent a heterogeneous population of patients with no well-defined disease entity or therapeutic intervention. This period of systematic investigation, however, was very i~portant, fn that clinicians showed that we cannot rely on traditional diagnostic categories to evaluate outc0111e in complex aulti-organ system failure. They also established that the high cost of intensive care in a world of limited resources would necessitate s~rategies to utilize ventilatory care only fn appropriate settings. Thibault et al (8) documented that only one in ten patients admitted to their medtca_1 ICU/CCU setting required a major intervention, suggesting that for the majority of patients, ICU/CCU services were unnecessary. Recent data for survival statistics, by age, after medical intensive care is shown on Table 1 -taken from Thibault (13). The overall mortality rates are representative of studies done in similar intensive care units and exemplify the universal finding that ICU mortality and hospital mortality increase markedly in patients aged greater than 60 years compared to younger groups. ', \

PAGE 173

( C OTA task 4 10/15/85 Contract 533-4935.0 t 000370 More taportantly, Thibault (13) reported 6-12 aonth survival after medical ICU discharge (Table 2). The follow-up mrtality rates were also age related, betng fairly constant up to age 60, then rising abruptly. The cuaulattve rtaltty at ntne aonihs for patients over 70 years of age was 391 and-for patients over 80 years old was 461. The outc0111es of medical ICU care (13) was also markedly affected by diag nosis (Table 3). It is important to recognize that ny of the patients fn this 11st of diagnoses with the lowest 1110rtality rates are never ventilated (e.g. coronary insufficiency, chest pain, syncope, adverse effects of drugs) or require ventilatory support for only a brief period of time (e.g. drug overdose). In the context of prolonged ventilatory care after acute illness, the hospital mortality of patients with such diagnoses as respiratory disease (24.41), gastrointestinal bleeding (20.01), sepsis (47.41), renal failure (23.31), and cardiac arrest (70.91) is 111ch higher. This list also serves to indicate some of the jor diagnostic causes of respiratory failure and illustrates the difficulty 1. drawing c"11clus,ons concernin9 the ef of a single intervention such as prolonged ventilatory support fr0111 such data. I j I With specific reference to the ,1derly, Campion et al (14) studied medical ICU outcome and found older patients were more likely to receive major lifesupport fnt~rventions such as mechanical ventilation, but were less likely to survive. Studies of surgical fnt~nsive care outc0111e have yielded similar mortality figures, with the same limitations. '-~-.. / ,, I' ,._, ---..,-"" \ /Jt:;

PAGE 174

, ,_ C ........ ---:#"". .. ... --\"' ......... 1 ... ,.. f. -i, -~ :~-.. -~~~~~~WM!-4~?-f ......... OTA Task 4 Contract 533-4935.0 10/15/85. 000371 5 -TABLE 1 OUTCCIE OF MEDICAL INTENSIVE CARE MORTALln BY DECADE Age Nmber ICU Hospital Mortality Mortality I I 0-19 52 5.8 7.7 20-29 354 4.4 4.8 30-39 375 5.9 8.5 40-49 687 3.6 5.8 50-59 1298 6.3 9.6 60-69 1705 8.4 14.0 70-79 1443 9.7 16.8 80-89 662 13.0 21.8 90+ 104 12.5 26.9 I Reference: Thibault, GE. The1Medical Intensive Care Unit: A five-year perspective. In Ma~or Issues in Critical Care, P. Parillo and S.M. ~res, eds. Wtl ts I W11kens, 1984, pp. 9-15. .--~-... --, ,' I, _., I 7/

PAGE 175

(- OTA TASK 4 Contract 533-4935.0 10/15A)i8 0 3 7 2 6 TABLE 2 ICU OUTCOMES: FOLLOW-UP NORTALin BY AGE Age N1111ber Post-hospital Mortality 0-19 38 5.3 20-29 236 4.2 30-39 237 7.6 40-49 474 7.0 50-59 842 7.8 60-69 1015 12.7 70-79 831 19.5 80-89 389 23.6 90+ 62 29.0 Reference: Thibault, GE. The Medical Intensive Care Unit: A five-year perspective. In ~or Issues in Critical Care, P. Parillo and S.M. Ayres, eds. w 1111115 I Wilkens, l984, pp. 9-15 ... \ \ tl>-

PAGE 176

'" l@J.,~I; .!CJ 11d ... Iii Ill ........... .............................................................................................. .. ,.. I : ..... ,... ~\ ( C C::, \ ) OTA Task 4 Contract 533-4935.0 10/15/85' 7-000373 TABLE 3 ICU OUTCOMES: MORTALln BY DIAGNOSIS Diagnosis NUllber Posthospital Hospital Mortality Mortality Myocardial infarction 828 12.2 15.4 Coronary insufficiency 650 6.2 2.1 Arrhythlnias 441 12. 7 '6.3 Chest pain 337 4.7 0.2 Congestive heart failure 305 26.6 10.5 Respiratory disease 286 20.6 24.4 Drug overdose 241 5.8 0.6 Gastrointestinal bleeding 181 17 .1 20.0 Neurologic disease 92 20.6 19.6 Syncope 91 12.1 1. 5 Diabetic syndrome 80 10.0 2.5 Adverse effects of drugs 62 9.7 1. 2 Sepsis 54 18.5 47.4 Renal failure 54 20.4 23.3 S/P cardiac arrest 31 12.9 70.9 Reference: Thibault, GE. The Medical 'Intensive Care Unit: A five-year perspective. In ~or Issues in Critical Care, P. Parillo and S.M. Ayres, eds. w 111111s I Wilkens, 1984, pp. 9-15. 113

PAGE 177

. OTA Task 4 Contract 533-4935.0 10/15/85 -s000374 ( 2) Detenainants of Survival In response to the limitations of simple surv;val studies of intensive care outcoae, Knaus et al (15) recognized that a system was needed that would capture the essence of what an intensive care unit does. The APACHE sys tell was devised, which stands for Acute Physiology and Chronic Health Evaluation (16). The acute physiology score (APS) of APACHE is a relative value scale assigning a weight (0-4) to each of 13 c011111on phys;ological parameters .that describe the function of the body's major organ systems. This index (APS) has been validated (17), and there ts a smooth and consistent relation ship between APS on admission and risk of death. This relationship has been verified in multi-centre trials in the U.S.A. (18) and France (19). A major finding in the series of studies which have been su111111rized by Knaus (15) was that there are five major potential factors determining outcome of intensive care (and ventilatory care). These factors are particularly relevant to the outcome of care in the elderly. The APS represents t,~ degree of pnysiological disturba ce of~ ~~rticular disease process; the elderly are considered to have a reduced physiologic reserve. Knaus' studies suggest that acute physiologic abnonnalities have the same implication in terms of risk of death regardless of the disease process initiating the physiologic disturbance. In the elderly, outc0111e should be assessed in tenns of APS rather than the traditional diagnostic classifications as discussed in Part 1 (Survival Studies). Because Knaus' studies are so important, each of the five detenninants of I ~-::: \ outcmne will be discussed independently with special reference to the eltlf

PAGE 178

( ( (. OTA Task 4 Contract 533-4935.0 10/15/85' _9_000375 derly: a) type of disease process, b) severity of disease, c) chronic health status, d) age, and e) therapeutic modalities available. a) Type of.Disease Process There is no doubt that the type and the reversibility ofthe primary disease process precipitating ventilatory care determines_ outcome. For example, can_cer patients have a higher mortality rate than other respiratory failure subjects. Patients with irreversible disease processes, such as severe pul11anary emphysana or end-stage ischfc heart disease, occasionally cannot be weaned from ventilatory support in acute care hospitals. Patients with irreversible disease processes requiring ventilatory support are the subject of this OTA report. Therefore, ft is important to emphasize that these pa tients are a vast minority of the total group of patients treated with pro loRged ventilatory support. It is equally important to emphasize that these patients with irreversible disease processes are extremely difficult to pre dict "failure tn wean prior to instituting initial ventilatory care. This issue prognostic uncertainty is the crux of the physician's dilenma in the decision-making process which will be discussed in OTA Task 5. Multi-organ failure in a patient treated with ventilatory support also in creases the risk of death (21). This study (21), and our published data (Appendix), suggest that unless organs system failure are reversed quickly (less than 2 days), the hospital mortality rate exceeds 50 percent. None of the 90 patients with three or more organs system failure for more than 2 days left hospital alive. Our experience 1n the elderly (Appendix)

PAGE 179

:,..,., ......... ........ Mljb._11161111 ,......, ... ,__,.bllltllib,._ __ M -M 1-1-M~H ti:w.t tt .... t ilMlt CW ....................... ...._ __ ... ,.,--.. _,~...,_, .. w_,..,_........,"__,,_._,~...., .... _._,.....,.. ______ ,. \ t .. OTA task 4 10/15/85 Contract 533-4935.0 10 _O O 03 7G specifically suggests that the cOlllbined effect of renal and respiratory failure ts a very high probability of death. These data 11Ust be noted to eaphastze the difference in patient populations between those treated to day in intensive care and polio.patients treated in the 1960's (1,2). The potential for long-term salvage of large cohorts of patients was very high during the polio epidemics. Single organ failure (respiratory) was specifically treatable by mechanical ventilation (hence reversible) in younger people.* In contrast, patients treated with prolonged vent11atory care in ICU today have severe, irreversible disease, often coexisting with n,ltfple organs system failure in elderly people. b) Severity of Disease Process If severity is analagous to APS1 then the probability of death increases with increasing severity as shown by Knaus et al (15). This relationship is also true for a variety of primary disease processes (Fig. 1). *Editorial C01111ent: The polio patient had acute respiratory failure because of f~volvement of the neuromuscular system; there was no primary prob1 with the lungs. The sa good outcome has been the experience with -other medical conditions which involve the neuromuscular system. I agree that the pathophysfology ts a very important prognostic factor. Controversy exists regarding which kinds of pathophysiology is appropriate for prolonged mechanical ventilation. (Goldberg}

PAGE 180

, \. C /ft: \(. ..... -.. .. OTA Task 4 Contract 533-4935.0 ) FIGURE 1 EVALUATING MEDICAL SURGICAL INTENSIVE CARE w ... C a: :c ... C UI 0 .J C t-it en 0 :t I 100 90 80 70 IO 50 30 20 10 0 // / ~/ / / / / / / 0 I U a 4 INCREASING ACUTE SEVERITY OF ILLNESS CACUTE PHYSIOLOGY SCORE) OLS Regeession All s~s ~nificanlly tP < .011 la,ger than zero Relationship between severity of ilness and hospi:al death rates by disease. 1011s''Wo 03 '77 -11 -Reference: Knaus, WA., Draper, EA., Wagner, DP. Evaluating MedicalSurgical Intensive.Care Units. In \!Nor Issues in Critical Care, P. Parillo and S.M. ~res, eds. W1 111 and W1111, 1984, pp. 35-59. I I .' ... /. ?1

PAGE 181

,, ,i,,. OTA T1sk 4 10/15/85 Contract 533-4935.0 -t{J VO 3 7 S We investigated the influence of severity (APS) specifically in very elderly patients. (75 years of age and older) who required ventilator care in our respiratory intensive care unit (RICU). This experience is fully de scribed (Appendix) and has been accepted for publication in Critical Care Medicine*. The major findings are as follows: 1) The APS on RICU admission could not predict survival. 2) Only 17.91 of these elderly patients died in hospital {11.51 in RICU). 3) This mortality rate was higher than in younger patients. 4) Hospital survivors were not only froa the low-risk mnitored group or after elective surgery; that is, age and APS cannot predict outcmne, and the d11emna of prognostic uncertainty in the outcome of ( ventilatory care for the elderly remains. c) Age Knaus studies have identified age as an independent risk factor, presunaably related to, _d physic~~ic reserve to a given disease pr~~l study in the very elderly, however, suggests that many critically-ill pa tients over 75 years of age do benefit from RICU care, including in-hospital prolonged ventilation. Very few if any of this age ~roup could func tion independently if confined to a ventilator-dependent lifestyle. None of our patients received any ventilatory support outside of the RICU. There may *8yr1ck's study has been since published: Mclean, R.F., McIntosh, C.D., King, 6.Y., Leung, D.M.W. and Byrick, R.J. Outc011e of respiratory inten sive care for the elderly. Critical Care Medicine 8:625-9, 1985 I '" \ \

PAGE 182

( OTA Task 4 Contract 533-4935.0 10/15/85 000379 -13 -be some elderly patients (aged 65-75) who could benefit from a home ventila tory support outside of RICU. These patients are rare among the large groups studied in RICU environments of acute care hospitals. d) Chronic Health Status The elderly have a higher prevalence of chronic debilitating disease pro cesses, which is a maJor factor limiting physiologic reserve and their capacity to live independently in a home-like environment. This emphasizes that age alone is NOT a factor or criterion on which we should limit the use of mechanical ventilation. Individualization of patient care planning is essential for long-tenn ventilation -whether in RICU or in a home care program. Many of the patients treated in RICU with prolonged ventilation have chronic debilitating diseases or irreversible disease processes that would make them inappropriate candidates f~r a home care ventilation program. Several authors (14,15) have noted a slight trend toward fewer RICU admissions above age 70. Campion (14) suggested that physicians may be less aggressive treating acute problems in elderly patie:>,cs; however, this may reflect the influence of chronic health status on overall decision-making. This will be discussed further under Task 5 of the OTA report. e) Therapeutic Modalities Available Physicians have been urged to "contribute more by doing less". There is no doubt that survival is not linearly related to resource utilization. In fact, Scheffler et al (22) have identified a U-shaped relationship between increasing therapy and the probability of death. The ethical aspects of the application of technology (ventilation) to the elderly is particularly /lf

PAGE 183

............. : ........................... ....................................................................................................................... ... \ (: OTA Task 4 Contract 533-4935 0 10/15/85 ooory0n -14 u '.1 troublesome to the cHnician. Simply because the technology is av.ailable, physicians should not feel compelled to utilize it inappropriately. Studies (23) show that a disproportionate amount of health care expenditures occur in the last year of life. The increase in the use of hospital care in the last year of life did not begin in-the USA recently, but in the mid-to late 1960's, after the introduction of Medicare and Medicaid programs. This suggests that availability of the technology may be a factor. There are no data that I am aware of which suggests this trend inappropriate for the severity of illness. Scitovsky (23) suggests that the increase in resources used in hospital (including ventilators) has been proportionately the same for patients who die and those who survive. -CONCLUSION The detrimental physiological effects of prolonged ventilation are minor, and most patients adapt spontaneously_ to respiratory support. The implications for elderly patients' prognosis will largely depend on such factors as the reversib1 .. y of 1.~e pri,nary disease process, severity of illness, and chronic health status as described. Our study (Appendix) suggests that in-hospital prolonged ventilatory support can result in elderly long-tenn I survivors w~o live independent lifestyles that they consider satisfactory. The rates of recovery from specific disease processes vary with associated factors, especially severity of illness. In our own experience, very few elderly patients who are ventilat~d long-term in RICU are candidates for pennanent ventilation.

PAGE 184

( OTA Task 4 10/15/85 Contract 533-4935.0. 1dJ-O 03 [; 1 3) Physfologfc effects of mechanical ventilation; prognosis, need for further S!!! (Goldberg, Indihar) Patients who require mechanical ventilation generally fall into two major categories: 1. Those who can reasonably be expected to be weaned from ventilation. 2. Those who cannot be reasonably expected to be weaned for mechanical ventilation once it has been applied. The physiologic effects will be different according to the category. In those anticipated to be weaned, mechanical ventilation is used to reverse acute single or multforgan system failure and to "buy time" for this to happen. When oxygenation and ventilation are improved, the brain is pre served, and the heart, kidneys, and other vital organs improve their function. This improved function pemits a more rapid recovery from the acute illness and return to previous health. In those not anticipated to be weaned, mechanical ventilation fs used to augment or replace natural efforts to breathe. Under these circumstances, improved oxygenation and ventilation will enhance mental function (in:._~a!.e clarity cf thought, level of awareness, state of alertness) as ft improves the function of other vital organs. One result of ventilatory treatment is an improvement I fn mental cJmpetence which is due to improved gas exchange that was not the case during ventilatory failure. The physiologic result of such use of the ventilator is a more medically stable patient who requires less diagnostic intervention or major changes in therapeutic management. Such a patient is then a candidate for transfer to an alternative location with less costly I technology and caregivers~ It fs possible that with more time and rehab111tati.on, such a person may also improve to the point that they may '"\ I /fl

PAGE 185

. ..:M'llt&lltta,._li:IH,.ililtltlnahfMHielMi-b&NUWMMttt!tltltttfH ft! hi tft I r'ltftldtftltttl ht1Hbitttlt04t1Mtttsltftt>G I Ito I 1 ftftftttlMM I cttl?C 1 ht ti OMMNM>GD1t1Ht&NHNMadMNMl .. t.M~~w_,w_, ...... __ I \ .,.. .. OTA Task 4 10/15/85 Contract 533-4935.0 0 0 0 9 i-... -16 ,.._....., become free of life-supporting technology. This would result from a period of medical stability that was made possible by prolonged mechanical ventilation. Not all physiologic effects of mechanical ventilation in the elderly are clear-cut. Persons with advanced age are always at risk for complications of their basic disease. The use of a venti~ator predisposes a patientto immobility; this increases the risks of phlebitis and embolization. With chronic ventilator use, the return of blood to the right side of the heart is impaired; this can lead to chronic right heart failure. However, this effect is balanced by improved pulmonary blood flow due to reversal of hypoxia and hypercarbia The prognosis and need for further care will also depend upon the category. For example, a younger adult, with a high cervical cord transection, resultant quadriplegia and ventilator-dep~ndence, cannot be reasonably expected to ever be weaned. from mechanical ventilation. This is similarly true with progressive neurological diseases and some patients with severe chronic obstructive pulmonary disease. Most patients with acute respiratory failure are /considered to be "weanable"; the ventilator is utilized as a temporary measure. Later, it may be distovered that, due to the patient's underlying disease process (severe emphysema, lung fibrosis), weaning is impossible. In both categories, consideration of ultimate outcome must be considered before application of the ventilator. However, in most instances, the prognosis is virtually impossible to predict, particularly in the .. '\ \ I I I

PAGE 186

. '-K'lllitnSSt'citH:ltl>l'IWMiila.tt\Klt&6bli>il'1111ib'U1ilMit'IUi\laltti:bebliSttrNi1N't#tfbc'SINMi:il Mrft'trt41'tt ti,1' ')')ltfXMt'I Hf ft't11'i1i._6ti1 tt1tttltlWttnl*tUI ,., ... u.,.. .... ,..,..,.,,..wu..,.ttMMtfHtt I ftfblt't':'t'n 1i~,.,~_.;,:,.1. (: OTA Task 4 Contract 533-4935.0 l0/~5d963 83 -17 -emergency sjtuation where the ventilator is applied as a short-tenn neccesity and, unfortunately, the patient subsequently is not weanable for one reason or another. The prognosis depends upon the disease process. Younger patients with high cervical cord injuries, quadriplegia, and ventilator-dependance will have a virtually normal life expectancy. However, the patient with chronic obstructive lung disease, emphysema, and ventilatory failure requiring ventilator assistance will more likely be elderly and have other disease processes expected with age. Generally, most of the patients who require mechanical ventilation will have a significantly shorter life expectancy than their non-ventilated counterparts; however, many of the patients residing on the Prolonged Respiratory Care Unit (PRCU) at Bethesda Lutheran Medical Center, St. Paul, Minnesota, have been ventilator-dependent for 4-5 years. Patients with neurological degenerative diseases (amytrophic lateral sclProsis) gradually succumb to. -the ravages of the primary neurological disease process and nJt to the rd~piratory failure which initiated t,. ventilator support. These patients often live for 2-3 years once the ventilator has been applied. 4) .Rate of survival, death; dependency on mechanical ventilation; deg~ee of dependency (Indihar) The experience from the Bethesda Lutheran Hospital PRCU indicates that 35.SS of the patients died while on the unit; other patients have been discharged to other care facilities and have died there. (See OTA Task 2: Rehabilita tion Statistics from the PRCU). Such patients were, for the most part, \ /0

PAGE 187

~ww .. wwWW~w-,w~_,...,._._...lilia~WWWW'6-.t'N'NliWMii'tnitnit't6t't't''ti 't,'tnla't' ft't bt'tift t t't t'td 'tf I tit t I tw-,h-.U6MWI MMMtet.-... t t loWutM MM 1 HM CM Ht MMMI 1 II .. OTA Task 4 10/15/85 Contract 533~4935.0 -18 -0 0 0 3 8 4 ( ( ( elderly, with chronic fibrotic and/or obstructive lung disease, who suffered from irreversible disease processes. Ventilator-dependen~ elderly survivors were virtually unweanable and remained dependent on mechanical ventilation regardlessof the efforts of staff and patient. The underlying medical condition was generally too severe to-be alleviated through nonnal weaning techniques. Also, the majority of these patients were usually ventilatordependent 24 hours per day. Small incremental periods off the ventilator could be achieved; perhaps the patient could even be off the ventilator in rare instances forwaking hours. However, the ventilator was, at a minimum, required at least 12 hours per day in virtually all instances. Indihar's elderly survivors often had an elderly spouse and no other primary caregiver available. Thus, existence out of an institutional or conmunal living -situation was very difficult to achieve, but not totally impossible, given an adequate home care support system. The most essential requirement was a non-professional, personal care attendant who worked under the supervision of health care professionals. 5) Impact on functional ability (lndihar) If the pat1~nt remains on a stationary (console) ventilator, ventilatordependence virtually inmobilizes the patient. Logistical constraints (the tubing) prevent any more than the most limited activity (i.e. moving from the bed to a bedside chair or conmode). Of course, the patient can be placed on a portable ventilator, which is quite mobile. This device can be placed on a small table, or moved from place to place on a specially-built rack which is part of a manual or patient-driven electric wheelchair. "", \ i

PAGE 188

( d tfNS .. .,.,...... ... ----. ~. -.,......_.,....,, OTA Task 4 Contract 533-4935.0 lO/lS(fb O 3{; 5 -19 -Portable ventilators cannot be used as the primary ventilator, because there are insufficient alann capabilities, and humidification cannot be readily adapted to these machines. But if the patient is under close observation by another person, the portable devices are quite safe for short periods of time (1.e. up to.4-5 hours), thus permitting mobility and a-wide-variety of activity. Acute respiratory failure is a life-threatenting situation; mental function is not appropriate or reflective of the patient's fullest potential. In addition, this is an emergency when decisions must be made with a great deal of prognostic uncertainty. With chronic respiratory insufficiency, mental competency is difficult to judge in patients, whether ventilated or not, who -are hypoxic or hypercarbic, particularly those with chronic obstructive lung disease. Although each individual tends to respond in a unique way, even hypoxia (lowered o2 ) or hypercarbia (elevated CO2 ) to a mild degree tends to decrease mental functioning and decision-making. However, such hypoxia and hypercarbia can be r. ~rst~ ~, optimal ~ent1lation and s~~plemenca, GXJ9E often with an improvement in mental function. According to lndihar, the mental competence of an elderly, ventilated patient is generally not unlike what would be seen in a non-ventilated person of compariable age, particulary when the patient is 0stable and not suffering from complications of a disease process (pneumonia, bronchitis, cardiac failure) which, by causing a fall in blood oxygen level, could result in confusion and even coma. It has always been Indihar's policy .. to allow the patient to make as many decisions concerning their own life as possible. Although judgment is sometimes impaired, Indihar has not found it to be that much different from any chronically-ill patient, young or elderly. ---~ \ \

PAGE 189

.iilfWMWIMMH~Nffim1fft'11t#WififttilififtfildtfMtit'tYJNWWemm'Yt57'i::eetMNMtMN!tttttMMfMMWitfMMMMMMMMMMMMMMMt'MtiMMMMMtfWWMXWMMl'NlftitilifilfW&Mt;ca,;ili, c. (~ OTA Task 4 Contract 533-4935.0 6) Technology: safety and risk (Ind1har) 10/15/85 20110038(; According to Indihar, ventilators are quite reliable, given a reasonable maintenance schedule*. Battery backup in the event of electric failure is available for all portable ventilators, and replacement ventilators** are generally imediately available from reputable home care providers within a short period of delivery time. Likewise, compressors, humidifiers and other ancillary pieces of equipment are quite basic pieces of machinery, and, with adequate maintenance and replacement schedules, can be expected to perfom reliably. The sources of oxygen have generally been considered to be the most dangerous piece of equipment located in the patients room, particularly if the patient is not in a institutio~al setting where the oxygen source is likely piped in through the walls from an external bank. There are potential risks of inflamability, leak, or explosion from gas under pressure if the tank is not handled properly. Most patients and their families dislike the concept of a large and dangerous oxygen tank in their home. However, given proper precauti.ons, these tanks are quite safe. *Although routine maintenance is done. there has been an increased incidence of sudden equipment failure in my own experience and in that of physicians, respiratory therapists, and consumers with whom I network. This matter has been brought to the attention of the ASTM, F-29 Conmittee. (Goldberg) ** Depending upon the medical conditions, it is necessary to prescribe more than one ventilator because of life-threatening risk of sudden equipment 1111lfunction. I have not found that having this ventilator out of the home to work out satisfactorily. (Goldberg) ... /" \

PAGE 190

... .-rtff 11 lllliN~ ................. .._,.. .. ,..,_,_.......,.._......_..........,.._............-ib .. M "6NN-. .. MN.._ ___ ..., ........ "" .................. ........ ( OTA Task 4 Contract 533-4935.0 210-0 0387 7) Medical Outcomes at Goldwater (Alba) Goldwater Me1110rial Hospital in New York City is a 910 bed facility, which has specialized ;n long-tenn rehabilitation and treatment of chron;c illness.* As a regional referral center for rehabil;tation, the kinds of patients are different from that in the acute general hospital. Goldwater accepts patients with chronic conditions from the Greater New York Metropolitan Area and beyond.** Ten percent of Goldwater's patients have tracheostomies, and 16S require tube feeding; both categories usually stay at Goldwater for the remainder of their lives. A large majority of the patients who are admitted to the ICU for acute intercurrent illness from other areas of the facility (Skilled Nursing, Rehabilitation Medicine, Long-term Medicine) already have moderate to severe congnitive impainnents. It is the impression of the Director of Intensive Care that, excluding patients with COPD, approximately 1/3 of the patients admitted to ICU for mechanical ventilation will survive.*** Approximately SOS of these survivors will remain on prolonged mechanical ventilation for an undetennined lingth of time. The majority do not return to their basel ,ue J,hysical and mental functioni .. ,... Th dat~ the exact number of ir.dividuals who were admitted to the ICU as ventilator-users, or who became ventilator-users in the ICU and then died, will be obtained for OTA Task 3. *Medical outcomes of patients at Goldwater are also discussed in part in OTA Task 2 (Description of range of patients). **At any one time, there is a 50-75 patient waiting list to enter Goldwater by similar ventilator-users from the acute hospitals in the Greater New York Metropolitan Area. ***There are approximately 200 deaths annually at Goldwater; 501 of them occu~ in the ICU. /fl

PAGE 191

( OTA Task 4 Contract 533-4935.0 10/lj/.~5 UU038S -22 -For patients who are maintained on long-tenn ventilation primarily because of either chronic intrfnsfc lung disease or neuro-111scular-skeletal diseases, the prognosis is quite favorable. The C0PD patient may go in and out of ICU several tf111es during their stay at Goldwater. They my be weaned, or partially weaned, again and again, depending on fntercurrent infection and other factors such as concurrent medical illnesses. The majority of C0PD patients at Goldwater must remain there; they are over 65 years old, mentally competent, and lead a satisfying life within the rehabilitation milieu the hospital provides.* Our Chief Pulmonologist estimates that the lifespan of th~ C0PD patient following admission to Goldwater with advanced disease is anywhere from -1-10 years. (Very complete statistics will be provided for OTA Task 3). The majority of these patients are capable of partial self-care. In addition, there are approximately 35 patients with neuromuscular disease at Goldwater in the Howard A. Rusk Respiratory Rehabilitation Service. The majority will survive an admission to the ICU with cognitive abilities intact. About Most patients from the senior citizens group who need or are on mechanical ventilators are mentally intact and WANT TO LIVE. They have had productive life in earlier age. They have paid taxes, built the prosperity of this country, raised family, paid for the education of the younger generation and have served their country in many ways. It will only be fair that their fellow men give th the chance to live as long as they enjoy life, even ff they are on mechanical ventilation. My 9 C0PD patients are alert and bright and, in the past, were professionals. Unfortunately, they either have no family, or their families fear taking them home or caring for them. There are no health related facilities or nursing hmnes which are equipped to take care of patients on respirators" (Lilia C. Gay, M.Dc, Attending Physician, Department of Medicine, Goldwater).

PAGE 192

( ( t t ttttttMM .... OTA Task 4 10/15/85 Contract 533-4935.0 -23000389 15 ventilator-users per year from this Service are able to return to live in the c0111111nity1 either with fily, or independently with the assistance of paid caregivers. The nmber of ventilator-dependent patients with neuro muscular disease who are 65 years old and discharged to the c011111Unfty is less than one/year. The elderly patient has characteristics of the lung that increase risk for infection. Specificall_y, the closing volume (volume at which small airways tend to critically narrow or collapse) becomes smaller with age. If the elderly person has increased mucous (bronchitis, COPD), or reduced strength (neuromuscular weakness), secretions may be retained and cough impaired. These secretions must be mobilized and removed or they will lead to further collapse of segments of the lung and infection. If the elderly per-son requires prolonged mechanical ventilation, proper upper airway manage ment (chest physiotherapy, suctioning) will be essential to clear these se cretions. The prolonged USP of a ventilator in the proper way will expand the lung and reduce the likelihoo~ Jf in,actic~. There 4 ~ no reas t~ .. cipate an increased risk of infection with time because of the ventilator per se. However, the risk is increased from antibiotic-resistant bacteria which are 1110re likely found in an institutional or nursing home setting. There is no critical 1110111ent or duration of time beyond which risks of prolonged mechanical ventilation increase or change provided that all involved are well aware of the te~hniques and technologies involved. In fact, risks are less because the patient is more medically-stable. However, there is a risk with the long-tenn ventilator-user (lOS vital capacity and ; --.--.. --,1-~ l f ti~ I ,, I .. :,. ... \; /II

PAGE 193

. Mt'XXdttMYMttXtMXMttnMM nttn: tt ttl tttt : tttt tr: r tt t ttt t n M 1 1 .,. l. C.. OTA Task 4 Contract 533-4935.0 10/15/85 ao 0 O Ol~ -24 requiring ventilation 24 hours/day) of anoxic encephalopathy occuring during inter-current massive respiratory infection, or during resuscitation from inadvertent cardio-pul110nary arrest. Such patients may not be rendered brain dead by these insults, but may remain either in a semf-c01111tose or comatose condition for many months or even years. With the law as ft stands today, such patients must be maintained on ventilators until death from other causes. It is the feeling of medical staff &t Goldwater that the use of mechanical ventilation to prolong death rather than to sustain life in such situations is an abuse of technology. Portable ventilator equipment is rapidly becoming more sophisticated. Many elaborate alarm systems have proliferated, and with proper maintenance, these -devices are becoming safer in the home.* Staff must constantly reassess the types of ventilators being used by each patient. Multiple factors must be taken into consideration. It is reconnended that the Bio-Ethical Conmittee of the Medical Board take an active role in working with the medical staff on thes~ issues. Misks are greater outside the ICU, but the lifestyle of the individual is eminently more satisfactory, unless requiring an ICU for critical illness. The patient, where possible, himself must be actively involved in .decision-making on the type and number of ~entilators and alanns. *As a student of Dr. Alba-and frequent visitor to Goldwater, I must state that the major reason why this equipment is safer there is because it is used and maintained by a center of expertise. (Goldberg) .... \ !Pd

PAGE 194

(_ OTA Task 4 Contract 533-4935.0 B. SOCIAL, PSYCHOLOGICAL, ECONOMIC OUTCOMES 10/15/85 -2sU00391 The questions raised by OTA about social, psychological and economic out cmnes have been answered by three expert authors with multiple perspec tives: Dr. Robert Byrick Authority on outcome analysis in an acute ICU Margaret Pfronner -A ventilator-dependent adult for over thirty y~ars; an authority on technical aids (Department of Rehabilitation Engineering, Northwestern University Medical School); and President, Illinois Congress of Organizations of the Physically Handicapped (COPH) Gini Laurie Editor, Rehabilitation Gazette and Founder, Gazette International Network Institute. An authority on independent liv-ing for disabled persons and the resource person for over a generation regarding prolonged ventilation issues. Due to the nature of the responses, they are presented according to per spective. In addition, connents from other a'rit;'(\S have beer. int:,..!dea to assure a balanced discussion. Psychosocial Outcmaes (Byrick) There is little data in the medical literature on the effects of prolonged ventilator care on the psychosocial adaptation of elderly patients and families. Subjective studies by Campion et al (14) and ourselves (24) suggest that elderly patients who have survived prolonged ventilatory support during critical illness in h~spital can function as well in society as younger patients. In an effort to specifically examine this issue in an

PAGE 195

At r ,o oo ,,,i:drt:ttt~ ..... _...,tchd 'tftd )#)' ) II I a111t1 tt:a I I t llMWllilW ............ W&, .. ... N 1 ('"' OTA Task 4 10/15/85 Contract 533-4935.0 26 _o o oan 2 elderly population (greater than 75 years of age), we asked survivors if they would undergo the same treatment again. The vast majority of these patients wanted aggressive ventilatory care if confronted with similar circumstances (Appendix). This suggests that prolonged ventilatory care by itself is not uncomfortable nor particularly distressing from a psychosocial adaptation point of view. The major psychological factor to stress is that prolonged ventilatory care could cause a failure to confront death when it is inevitable. In these circumstances, irreversible disease processes, which ultimately will lead to death, could be treated (inappropriately) by mechanical ventilation and associated supportive techniques with no hope of achieving an i,ndependent individual. Such situations must be minimized to reduce the negative impact on patients and families who must confront the decision to "let death come". This inappropriate use of prolonged ventilation 1s primarily an in-hospital issue at this point in time. The primary causes of employing life-supporting technology 'in circumstances where ft is "medically useless" (25) may bP. a combination of sue~ factors as: 1) 2) 3) 4) 5) 6) 7) phfsician attitudes, { legal uncertainties re: responsibility, resource availability, ~edical inexperience, prognostic uncertainty, lack of "withdrawal of care" protocols, and I ; patient "1nfonned consent" issues. .. --.. ...... / I I ', :

PAGE 196

,Wt tf) )') t t ttl ............................ ww,e_, _,_..., ~) .~ .. ~- ------_ .......... _._,. _,..._...~'il_."-..,,."'"'''W~w,,.,,,~ ... -., ... ,,,~,,._H1Jti-"'uw-.., .. ,., ... ,, ............. __ .,. .. .... ______ .. '""---- .. .,._ ........ -,.,_ ...... ( OTA Task 4 10/15/85 Contract 533-4935.0 900333 -2 -These issues are particularly troublesome in the critically-ill where ex isting data cannot predict outcome with certainty. One urgent need is for education of both medical and lay c011111unities concerning realistic expectations from medical care.* Although survivors in our study considered RICU care worthwhile, we cannot estimate-the psychosocial hann inflicted on the patients who died by prolonged ventilatory care. In a general open-ended questionnaire, we assessed the ability of survivors of RICU care to function in society (24). Their level of social activity was satisfying to them, and most were functioning at a level comparable to their pre-morbid status. This is particularly important in the elderly population, as they were not fully active and independent (Appendix). Since most of these patients had chronic health problems before an acute exacerbation or illness, the most important factor was that they beHeved that this level of activity was worthwhile and satisfying. Make et al (,o) anu Goldberg (27) have documented s.1.1~ar P~i<-h~~ocia" tation of patients to a chronic ventilator-dependent lifestyle. I have no experience with this type of patient, but can only emphasize that very few I I of our elde~ly survivors could independently care for themselves if ventila. tor-dependent. Hughes (28) has stressed some potential problems with a home-*Such an effort is currently underway by Sister Corrine Bayley, CSJ, Dir-.. ector of the Center for Bioethics, and Vice-President, St. Joseph Health System, Orange, CA. In the project, California Health Decisions (Involving Citizens 1n Health Care Choices) ,'.at "town hall meetings", the questions are asked, "Are we obliged to:prolong life with every means at our disposal? If not, when should we stop? Who should decide? (Appendix) ... \ /93

PAGE 197

( OTA Task 4 10/15/85 Contract 533-4935.0 0 0 (i' ,r._ : I A 28 V i_i t ventilation program. By extending such resources outside of the RICU envirornents, the health care delivery system is also extending the potential for psychosocial maladaptat1on and extending ham. If the resources are widely available in a relatively unsupervised fonnat by inexperienced clinicians, there will be individual cases where the technology is applied inappropriately. This will be costly from an economic point of view, but th~ greatest harm may be in extending unrealistic expectations within society. This emphasizes the conclusions of Goldberg (29) that regional centers should be established with well-organized support staff.* By using the regional system approach, the selectively small number of elderly patients who can benefit from a home ventilator program could be followed and such psychosocial factors as depression and suicide could be minimized. Economic Outcomes (Byrick) rhe medical literature is replete with data verifying the fact that pro longed intensive care (including ventilatory support) is very costly to the health care delivery system (4-8). In a preliminary study done in our RICU, 80 per cent _of the non-physician costs were salaries. This emphasizes the need for sophisticated nursing care and respiratory technologists to support mechanical ventilation in intensive care settings. *Such centers provide many other benefits including quality-assurance, case-management, care-monitoring, and cost-savings. (Goldberg) ,,

PAGE 198

, \ (~ .... OTA Task 4 Contract 533-4935.0 10,w,~~a 95 -29 -An instructive study was perfonned by Detsky et al (30) who showed that the most expensive admissions to ICU were those with unexpected outcomes. This emphasizes that the cost of ventilatory care in-hospital is directly linked to the issue of prog,,ostic uncertainty which has been discussed previously. Cost-containment policies for ventilatory care require better prognostica tion by clinicians to limit provision of these expensive resources to patients who can truly benefit from such care. The cost of long-term ventilation outside of RICU settings is substantially less than that documented in RICU. However, one must recognize that in creased provision of home ventilator programs will not substantially reduce health care costs in acute care hospitals (31). The majority of ventilator-dependent patients in acute care hospitals are not candidates for a prolonged ventilatory dependent lifestyle. This is particularly true of the elderly subgroups who have a high incidence of significant co-morbid conditions necessitating care in RICU settings (for Pvample renal insufficiency, dementia etc.). These disabilities would m, indeper: living with a ventilator improbable. Although the direct costs of a home ventilator program to acute care facilities will be less than RICU care, such indirect costs to the health care system as home visits by nursing personnel must be considered. There may also be economic costs to families in tenns of lost income, and living

PAGE 199

. ,..w.,w .................... ............................... ,..,..,.., __ ...,_ .. ,,,," ,~,,'" .... .. .. .,,,,.,. ... .,,,., .......... "",.,..,,,,,,.., .. .,. .,,, ..... ..... ""' ........... ..,,.., ... "'"' 111 ....... .. ,..., .. """""'""""''""'w-, .. ,www .. ,w ..... ..., ...... ...,...,__..,ww .. .. w .. ww ... .,w..,,w., ... ,_,., .... ., .... .., ... ... .. ,.,1.,, ........... ,, .. ( ::, (: . OTA Task 4 Contract 533-4935.0 10/1s1~ o 3 9 d -30 -space in the home. These factors will be discussed in detail by other contributors to the OTA report who have experience in this area.* 3) Social, Psychological, Economic Outcomes -The Consumers' View (Pfr011111er,-Laurie) "Over the next 50 years, the Census Bureau projects that the number of Americans 65 and over will more than double from 26.8 million to 65.8 million. As a result, programs designed for senior citizens could comprise as much as 65 percent of the federal budget compared with almost 28 percent today Key issues over the next 50 years will involve housing and health care. Even with medical adv~nces, a segment of the population, especially those over 85, will have disabling diseases."(32) As noted in OTA Task #3, a small number of elderly persons will require either temporary or long-term mechanical ventilation. These elderly persons may include some who are previously in good health, so~e with simple. .or t.omplex acute and/or chronic health problems, and ev.en .those with *There is ari increased utilization of energy; electricity and heat is used around the clock for equipment and/or needs of caregivers. Often, there is an increased tax-assessment of a house which has required modification for increased living or storage space. Some situations require modifications of the dwelling and/or transportation vehicles for assessibility and/or heal.th needs (e.g. a van may be required for assessib111ty to health care). All of .these represent costs which are health-related but not directly reimburseable. Thus, they represent indirect costs which add to the burden of 1) high co-payments requested of families and 2) less than comprehensive reimbursement by public agencies and private insurance. Most families do not have the money to pay for these indirect costs of home care. (Goldberg) l?b

PAGE 200

,cftk226iMnftfMMtf ft!Mnt8MHidiltlttttBkMHtlt04ihtfttthft!tftftdtftlMHtftftftlt1MMt'tftftr ftfHHt'H )11th .. ,., 'Mr) ') tW I ,.. lil4l I tr M 1 M 1 I 1 CH ( 11' 'I I 'a '" .. : ... .... ; l C OTA Task 4' 10/15/85 Contract 533-4935.0 31 _o o 03 9 7 terminal illnesses. If an elderly person needs th;s support in an acute situation, and they do not receive it, they will not live as long. If they do survive, they will not be as alert and sensitive to their surroundings as they could be, and their physical condition will deteriorate much more rapidly than tha~ of those who enjoy the benefits of sufficient ventilation. There are many issues that our society has to face in regard to this population: Is this population (of which any one of us may become a part) worthy of our special attention? Is it important to have a Grandma, even if she is on a ventilator? Are the experiences of a wheezing old man beneficial to the young man? If these persons are of value, than we must muster all resources to enable such elderly persons to have at least a minimal quality of life. Life-supportive technology has saved and prolonged the lives of many people of all ages only to relegate them to acute care hospitals or nursing homes; only a few have had the opportunity of the transition to home, a congregate hot.~i,,y ar, c.~gen,, ~, f.'r h'-~ri, p. ogram. The challenge created L., erson. who require prolonged mechanical ventilation 1s one of providing more of them with options which will consider their safety, their need for individual I life styles/and a comfortable death with dignity. The following case history dramatically demonstrates how this can be done: : A 70 year old female first visited her pulmonologist in December, 1979. She was a retired school teacher with a history of severe, slowly progressive chronic o~structive pulmonary disease. From 1979 to April, 1984, she had a protracted and steadily pro gressive illness. D~spite optimal medical management which included home oxygen, she continued to de~eriorate. The patient lived with her son, daughter-in-law, and their 4 children. She had 3 .other children, and many grandchildren. Despite her physical ~ ........ .. -. --------..... I ( .:! r . -~-""" \ \ '~ 7

PAGE 201

( ., __ ( OTA Task 4 Contract 533-4935.0 1 Oll 5,QJJ O 3 9 s -32 -impainnent, she had a good quality of life in her loving environment. The patient had made it quite clear to her pulmonologist and family that she did not want ever to be kept alive by heroic or artificial means; specifically, she did not want to be on a respirator. On 4/1/84, she was admitted to the hospital ICU with pneumonia. She was severely hypoxic with PO in the 40's desp.ite all therapeutic efforts. The pneumonia progressed; she got weaker, had more trouble with secretions, became extremely short of breath. Smothering, she could not rest and was very uncomfortable. A consultation was held with the family. Theywere told that all was being done; there was nothing else to do except intubation and mechanical ventilation. The patient had stated her objection to this. The family had a lot of difficulty watching the patient fight for breath. They asked about the reversability of the dis ease and likelihood of getting off the ventilator. They were told that pneumonia was potentially reversible, but that the inability to wean was a possibility. They requested that the pulmonologist talk to the patient. Despite the fact that the patient was hypoxic, she was alert and fully comprehensive of what was happening. The situation was fully discussed. Because of extreme discomfort and shortness of breath, she accepted the slight chance that her pneumonia could be cleared and she could be weaned; she elected for mechanical ventilation. Subsequently, a prolonged hospital course ensued. Despite efforts at optimal ventilation, antibiotic and bronchodilator therapy, pastoral and pscyological counsell i.19, and a variety o,f weaning strategies, the patient was unweanable. The patient was now considered on prolonged mechanical ventilation, and home care was entertained. Because, of an excellent home environment with people who were lov ing and willing to care for her, the patient was sent home. Her care was provided by family members and sitters brought in by her family to supplement their efforts. On occassion, the patient had physical therapy and the consultation of mental health coun sellors and home care nurses. Living in her own specially-adapted room, the patient's interest in life returned. She spent much time with children and grand children, celebrating all holidays with her loving family. She began reading again, listening to music and watching TV. She resumed interest in her business holdings, and began again to plan her own affairs. The pulmonologfst made many home visits. He observed her spirit and the quality of life she was enjoying. Once, he brought a

PAGE 202

( OTA Task 4 1 0/ 15/ j~. 0 Uu ..J99 Contract 533-4935.0 33 pessimistic member of the Board of Directors with a special in terest in geriatric and medical ethics. After the visit, the Board Member conmented about the patient, "She is radiant! u On 2/9/85, the patient passed away in her sleep. This was 9 d~ys short of 8 months at h~. This period at home was one of quality, love, and involvement in her surroundings. There is one case-example in our society which presents evidence that pro-.longed mechanical ventilation is appropriate and acceptable. The ventilatory experiences of individuals disabled by respiratory poliomyelitis encompass both those who have been users for more than 30 years, and those, weaned years ago, who are now returning to ventilatory assistance at night to compensate for decreased respiratory function due to aging as they approach the status of senior citizen (39). With some exceptions, the fomer polio survivors on mechanical ventilators have lived at home with their families since the early 19501s when they acquired polio as children or young adults. The majority are employed and pay taxes. They are married and have children and grandchildren. They buy homes and cars. They travel. They have bP0n t..a~ir own case-n,a .. 11ge1 .'1d have assu c.J ventilator maintenance. Their a. ~es are proof of the potential of ventilator-users to live fully and productively in their conmunitfes ff they have adequate support systems (39)*. *My personal physician is such an ind.ividual. In his late 'SO's, he prac tices medic.ine full-time and has done so for over 30 years. He uses mouth intermittent positive pressure ventilation in his office practice and sleeps -at home or during travel to medical conferences in an iron lung. I have chosen this physician because he has taken the time to keep up his educa-tion and he listens. (Goldberg)

PAGE 203

( OTA Task 4 10/15/85 Contract 533-4935.0 JJ'"\ ,, n .. {'_ 0 ~1 1../ '"i V 3 -The following case history illustrate one woman's adaptability and potential: E.T.H., Artist, ballet teacher, and choreographer. Now in her early 601s, she has been a respiratory polio quadriplegic since 1953. A former Sadlers Wells ballet dancer, she teaches ballet and liturgical dancing with the assistance of a remote-controlled tape recorder and portable voice amplifier. She paints with the brush held between her teeth. During the day, she uses glossopharyngeal breathing and works in her own home with the help of attendants. At night, she returns to her iron lung in a nearby hospital. Her situation, as well as that of many other polio survivors, demonstrates that persons on long-term mechanical ventilation have not only survived, but have thrived, in settings outside of hospitals and nursing homes. By their learning experiences, we have been able to determine that (1) they had a safe transition to home, (2) their living has been less costly than in institutions, (3) they have needed some kind of corrmunity service support, and (4) they have exhibited a variety of life styles. The same resilience and self-direction of their own lives is demonstrated by ventilator-assisted individuals with myasthenia gravis, high-level spinal cord injury~ amyotrophic lateral sclerosis, muscular dystrophy, and other neuromuscular diseases. The following case history illustrates this adaptability and potential:

PAGE 204

. .. u\9'W,~ ......... ,,,:,,w~'h"-H''''-.""'" .... \.NM"'-''.;,w.i .. ~~~i.,,.h,hh,h1Wh,hhh,IU\,ll,l"')'"""\.~h,hl,,h.h1,1..Xh,\\.lt.)U1,hh)'-h~Ka~ltuUUOdMt ..... >tMHMetH f 1 t1 tftdtl>f ....... WVlllltiW dtftt ,,..,~ ... OTA Task 4 Contract 533-4935.0 Q.G. Retired executive and gentleman farmer. In his mid-60's1 he has been disabled by amyotropic -lateral sclerosis for more than eight years. He is dependent upon a ventilator fulltime. He lives at home with the assistance of his wife and a daytime nurse. They travel in their specially equipped motorhome. 10/15/85 3~-00401 Does this positive experience for over a generation with prolonged mechanical ventilation of these survivors of polio and other neuromuscular disease have relevance to issues facing an old person? The answer is yes. According to Make. the patient with neuromuscular disease comprises the majority of long-term ventilator users; there are very few centers with programs dealing with COPD, and they are represented in this OTA survey. If an elderly person requires prolonged mechanical ventilation. the above experience relates that this can be accomplished and what is needed to do so (medical stability, an acceptable social situation, an appropriate environment, sufficient support ser~ices and funding). As Byrick stated, the older person with multiple system vs. single system involvement will not achieve this stability or likely survivr. Howe.ver1 if thev do, the "eds becomt! less med ,cal anrl ... social. The older person is less likely to have family members who can serve as caregivers. and they may need non-professional personal care attendants in order to funfti on in activities of daily living. This was exactly the I problem that faced the polio survivor of the 'S0's as a young adult. It is of great value to analyze the syste~ that was put in place for such patients, for such a .system is needed again today for young and old alike.<39) The negative impact for prolonged mecha~ically ventilated persons living in ( _: hospitals or nursing homes applies regardless of age. Care 1n a hospital .... setting is h1ghly-sk111ed, but the environment as a whole intrudes upon the I

PAGE 205

,,., ........ .,.,.. -,~ktiillbf "a..t ............. t:)w.-,IAW -,ww.-,w p( -,11Qtf1ft1De ila.:I .... ~...,...._,ww.,_,wwwwuwwww",wwwvwwvw .. ,w~wwwwwww....,. .. __ ._,...,., .......,. ......................................... ....... ......... "'"'""''"''" ................ ( OTA Task 4 10/lS/85 Contract 533-4935.0 3JLO O ~1 0 2 privacy and dignity of the individual. The most significant diffe~ence between institutional living and home care, as stated by fonner patients in both hospitals and nursing homes, is that when persons enter institutions, they come under. rules and regulations that do not allow them to direct their own care. They lose control of their lives. "This atmosphere is noisy and the patient is subjected to frequent interruptions of sleep cycles. The most extreme example of depersonalization in the intensive care unit is the isolation of ventilator-dependent patients whose airways become colonized with nosocomial pathogens dangerous to other patients". (33) Sometimes families are discouraged by caregivers (physicians, nurses, social workers) who lack a positive concern for the right to a life of choice of the -ventilator-dependent person or a lack of understanding about alternative life styles, feelings, and values. These personnel, of which the chief decisionmaker is the physician, are almost totally influenced by the rules and regulations of the organizations for which they work or those of the reimbursement agencies. Further1110re, doctor~ d~ not always know who are good candidates for long-term ventilation. It is relatively easy to prescribe a respiratory program for persons with an acute decompensation, but it is mo.re difficult to deal with the chronically-ill who have used ventilator equipment for years, those who have not used it for a long time, and those who have never used it. For these people, the medical profession als need more awareness about these categories of respiratory care. A spokesperson for the Hastings Center stated on network television that the elderly are living longer lives, but not better. The emphasis in medical '" \ I

PAGE 206

>Mf8WrW91WftliMWa88ttilil8~.Wi:ft'tttW2ewettt1M8tfnt88MtltftfMMHHMt'lflWt6WS"11"1S:taidha616t9:0r\a:iUl'lllllt'CtttU6aiMtitftft tiMt t'HMb rtr )')ft' t ftdt slMtfHtft )'11111110 .. W..-", b#t I~, .. It htrltfHt ,.,..,,, .. .., ,,. ( (.' OTA Task 4 Contract 533-4935.0 10/15f6 0 4 0 :J -37 -care in our society is on acute care, with little regard given to those with chronic conditions. Because of this emphasis, the potential is very great for improving their quality of life and that of those who are tenninally 111. Presently, they are too often "dumped into long-tenn care facilities (nursing homes). Nursing home staffs are usually poorly trained, and the number of personnel is inadequate to provide the individual care needed to ensure safety. A person with emphysema requiring treatments four to six times a day would not be readily welcomed in a nursing home; the monopoly of staff time would penalize the other patients. needing attention. A good program of home care far surpasses any care given by a nursing home staff. For example, a ventilator-dependent man in a nursing home complained that the emergency alarm on his ventilator rang for twenty minutes before a member of the staff responded, and then not because the ,staff member knew what the alann meant, but because the noise was irritating. It fs not very likely that such 19norance wou -.a occur i11 a t,omt=-car .... s ;~uation. If it is thought that the lives of persons requiring full-time mechanical ventilation will be better ensured in a:nursing home, there is repeated evidence to disprove this. The I Subc011111ittee on Long-Term Care, Special Conmittee on Aging, U.S. Senate, has reported that the Jorfty of nursing homes fail to meet standards of acceptability (34). There is repeated documentation to support the argument that persons with I varying medical conditions, with or without mechanical ventilation, can be transitioned into home care settings either at a cost equal to that in a i l r ..... .. '\ \ I

PAGE 207

OTA Task 4 10/15/85 Contract 533-4935.0. 3a DO 04 0 4 hospital or.nursing home or, more often, at a substantial savings depending on the status of the caregiver. For instance, 102 Medicaid patients re ceived home care services after leaving an Ohio hospital. This saved 60 per cent over the cost of care in nursing homes (35). To become more specific, a 63 year-old woman, receiving around the clock mechanical ventilation for respiratory failure due to severe bronchiectasis and pneu monia, generated monthly hospitalization charges of $20,000. In contrast, $10,000-$12,000 paid for her home care, including rental of ventilator., oxygen equipment and private duty nursing fees (36). There is even a more dramatic savings when the family plays a role in the honie care. "There was no statistically significant difference in mortality between patients cared for by registered nurses around the clock as compared to care by fily or nurse's aides.(33) Other savings can be effected when there are good connunity support services, and when equipment is purchased rather than leased. For example, a 50 year-old asbestos worker with asbestoses required chronic mechanical ven'ti~at~on 10 24 hours ~aily for three years in a hospital. Later he was discharged home and was ventilated only during sleep. His hospital bills were approximately $15,000 per month. At home, monthly expenses were about $350 after an Emerson ventilator was purchased for $3,500 (37). Although purchase of equipment can reduce costs, ft fs leased as a rule. A rather conmon complaint is that maintenance 1s more readily available for rental equipment than for machines which are purchased, a finding supported by Splaingard (33) ', /"\ I ., \ \ ,ie,/

PAGE 208

.4~11n,uooo,rtiUSdtOdtdtftdtdHMtfMMtd!dMtd ftftdtfHMMt"lf?ftit'tdtft bit td?'bd dtd O t tit t t:Mtf 1 bl tdt' 1t t )1 tdNN .,,. Ml IIM t 1 1 ct H 1 t f 11 tt M t t MMMNMHMtt f CM MNM ttt t ( '' ,, :~-:: I 0 OTA Task 4 10/15/85 Contract 533-4935.0 -39 0 0 04 0 5 Satisfactory transitions to home or congregate living, have been accomplished when (1) the elderly ventilator-dependent person was as actively involved as possible in the planning process, (2) the family and/or friends had a high degree of c011111itment, (3) government and c011111unity support were identified and mobilized, (4) caregivers were well-trained and dedicated to the idea of mechanical ventilation and the alternative living concept. The elderly person must receive all infonnation given to the family and/or alternative caregivers, and be involved in the training sessions. The person should receive rehabilitation in the sense of learning to do as much for himself/herself, physically and organizationally. A respiratory therapist, whose job it is to transition persons from acute care facilities to alternative living arrangement, estimated that the elderly constitute about five per cent of her patients. About one third were placed in long-term care facilities, and two-thirds were cared for in private homes. Failures occur when the family is not truly conmitted, but accedes to the w1 .. es elderl.) 1 sons out uf a s .1!)~ t .t, er"' ~a the elderly h&s no desire to live with the technology that sustains them. I I Families exposed to the highly skilled nursing and life-sustaining tech. nology in a hospital setting are often overwhelmed and too discouraged to consider the possibility that they could play a successfu role in transi tioning a loved one to a home situation. However, the task is not impossible. Even older children have been known to help a younger sibling to be suctioned. This success is based on their instruction in good and bad technique. Families respond much better when they know there is some i l ... ''\ I ft>'>-1w

PAGE 209

, .... IIWWI ..... :..aht-'t !*'I .... a,_...,, -Wtf'-1 tiw.wH t~ftfM161jllWlljf tllollll ~-....d .. C C '6Mllt 1 ,.._. ~rtnt_,_ _____ _,.., -.-1111-.aw--11-ro-u 11_., -1 ---..wa.c 1-t ..... _, c, '-w..~w-,.wwww .. wwvw .. wwww .. -1w-w-. .. -...----- .. ~ ... ~ t ( C OTA Task 4 Contract 533-4935.0 40 coaaun;ty support: when the discharging hospital stands ready to provide on-going and emergency service; when there are reliable companies that lease and maintain equipment; when there are registries for nurses. attendants and/or health aides; and when there are public monies to support final alternatives to institutional life. With time, families find many unexpected be_nefitsfrom their home careex perience. In addition to that of settling into the more nonnal relationships, family members are relieved of the stresses and econom;c burdens of the routine trips to the hospital. Eventually, their increased sophistication and skills result in a great sense of accomplishment. Good caregivers are aware that. whenever possible, the ventilator-dependent person must direct the care. In the home setting, the caregivers are prepared to become part of the fy; responsibilities and roles are ex~licitly defined. Otherwise a great conflict occurs when the natural environment of the family 1s disturbPd. It is important that caregivers have good hands-on training to carry out I I such dut1es~s suctioning the airway, replacement of the tracheostomy tube, chest percussion and postural drainage, etc. They need to have conmunication by phone, or in person, with medical personnel who will answer any questions they have so as to relieve their anxiety and carry out a good program of care. Otherwise, care~ivers become fearful of life-supportive care, avoid this kind of ~ork, or respond inappropriately when they get involved. .... -.. ..' l 1 .'

PAGE 210

,'df:MttltWMkddiNHtftlMHHtWWftWe,ft'MMttt'JIHtfllMNMMHt't'XdMMXllMXMt'XWMMMMMt'MXMMtftaiteeeeill.iifldMMlldiHlflOtlOHMetltftht8$1dt#StttlilfMWttittlf (MtfX fttlt x:: tXtfMXlftfMXMXXrtl'ttiN8tft'titMti-'vi! .. .. : :~-:~;. ,.:\~~.~~~~~~~~~~-~~!~~--~:: ( OTA Task 4 Contract 533-4935.0 10/l~,04 -41 -0 i All caregivers involved also need access to the best current infonnation dealing with alternative options to institutional living and with coping strategies. They need to be aware that others who have been mechanically ventilated have achfeved independent life-styles, as shown in the following illustration of a ventflator-dependentperson who lived his last days at home: R.D.G. Physical therapist, computer progranmer, author, and director of medical-educational films. He was-disabled by amyotrophic lateral sclerosis in 1963. He was married and the father of two grown children. Dependent upon a ventilator full tfme, he lived at home with the assistance of his family and an attendant until he died in 1980. There is hope of survival from ALS and there is a great deal which the disabled individual and his family must do to survive. Another alternative to institutional living, and one whose benefits parallel home care, is congregate housing. The goal is to provide the relative independence of a private apartment rather than the controlled environment of a bed in a t,ospital or nursing home. Congrega .. t: hou:.. ng c."'n bt cesip'1ed to provide both personal and medical support services which will pennit residents wh~ are disabled or elderly to function on an equal basis with I ,. those who ate able-bodied. In France, such group living arrangements are well-established for ventilator-dependent adults. These options enhance in dependence and save money because of a government-authorized category of non professiona.1 care attendant. <27> I Just as great recognition;needs to be-given to transitioning persons from 1nstftut1ons to home care or congregate housing, there needs to be a great I .... .. ..... ... :;----... -. .. -\ I -~ \ ... ,J.o I

PAGE 211

bttet't'WMddmldllU~eeeeeeeetWtbts:kMtttttwreerxrrrt'MMtt't'MreeeetciWtttfeeeeeilHiUltlM8Mftfti31HMNMMVMMMXXMMXXMMXMMtfSMWM%MMMM?M~ttfMMtftJtt:ee_thl2?NS>tWt?i*'~ill ( (( OTA Task 4 Contract 533-4935.0 1011'1'1f O 4 0 8 -42 -awareness of the value of technical aids to the success of establishing and mafntafnfng higher quality life-styles. Transfering some dependence upon caregiver to a independence with a technical aid makes the user responsible for its successful application. Proper utflfzatfon of technical aids enable elderly individuals to function who otherwise cannot carry out certain activities in their environment because of a physical condition and/or lack of energy. Such aids may include battery-powered wheelchairs which can acco11111odate respiratory equipment; environmental systems for controlling electrical appliances (bed, ventilator, telephone); and electric page-turners. For those persons who can and want to work or volunteer, adapted personal computer systems can be employed. In our country today, there are persons of all ages who are ventilator-dependent and who want to go home. However they are forced to live out their lives in hospitals and nursing homes, because it fs the policy of private and public reimbursement payment agencies, including Social Security, not to allow funds for alter~dtfves. Sometimes a family will temporarily assume the cost of home care at great economic hardship. Eventually, they may have to terminate a ~ood thing, with the government again paying the exorbitant cost of institutional vtng." Insurance companies also have a policy of paying for only highly skilled nursing. Yet, not all ventilator-dependent patients at home need this costly care. full-time care by a registered nurse was required only for one-' quarter of the patients and averaged between $15,000 and $16,000 per month. Savings wer~ very substantial when patients were cared for by families or ...... ......... .. I I.~ I __ /"

PAGE 212

:ibliritkvtt2MHMM8Si:iti1Meitxeeettntnli1HtfilrdMtfkMM8kMMHttitNtfMtbiltftfHMtf !Mtftitf ,,,,,,, ft(Mt') t'tdt t tft')tNWtillrNW 11 n r r a-lahtN..,..'i&Wlil*'lW.WlllllW n "' ... MPIJWW~W..i.6WUWlitV." ...... "w.w.w..w-. .............. _.W...J''-''-~ \ ( OTA Task 4 l0/15(1lb O 4 0 9 Contract 533-4935.0 -43 friends, or even part-ti by nursing personnel" (33). It is hoped that insurance companies will soon review their policies and allow, whenever possible, reduced wages for personal care attendants and home-health aides. The money will then last longer, postponing the family's reliance on government agencies. The insurance companies can keep their own money invested for a longer period of time; insurance premiums will be less cost ly. Transition for ventilator-dependent persons into non-institutional living is likely to influence in a positive way the quality of life for their remaining years and delay the time of death. The final decision as to whether or not to do -this should ultimately be that of the person involved. The decision should not be made when the person is. particularly 111 or depressed. The decision should be made based on reliable infonnation to alleviate unwarranted fears. The involved person should be aware that the overwhelming majority of those who have been appropriately ventilated are grateful fur ti,-= technolugical intervention even 1.iuJgh i" is a sma1 placement for the loss of their fonner vitality. It is recognized that "involuntary relocation appears to have a greater negative impact on the elderly tha~ or any other age group." (42). Too often ft is other people who decide: the insurers who develop policies of payment~ government officials who do or do not support the creation of c0111111n1ty serv1ces,health careg1~ers who are influenced by the method of payment or lack of ft and.by thefr'own institutional practices, physicians and other health care personnel who are unaware that there are successful i

PAGE 213

;.~il~~~oiiil~~'U~~~Qiaetft'dklitfMttb .. wtMWtWNNMMMtUtleet!WtWUW!MttvrttttMMXMtRtt'MtftttttN tbftfMtltXt121ttttXMM#ftfXtttttfMtttwww1tN8MtitNMi~~titi: ( ( (: .:. ', \ .' OTA Task 4 Contract 533-4935.0 10/15/85 000410 -44 -alternatives to institutional care, and families and friends who lack confidence in their ability to meet the challenge of home care. Within the past ten years there has been an ever-growing acceptance of hospice philosophy and an increase in the number of programs. The candidate for hospice care is nonnally expected to die.within six months, and the focus shifts from treating the disease to easing a patient's physical and mental distress.< 4o) The hospice alternative is overwhelming appreciated by the patient, family, and other caregivers, easing their physical and economic burdens as well as psychological oppressions of guilt, fear, and anger(4l). Medicare now offers a comprehensive hospice benefit to eligible patients cared for by hospices that meet its standards. There are about 170 hospices that h~ve received Medicare cerification.<42> However. the number of hospice programs, which include both home-care and inpatient services, is over 1,300; and the National Hospice Organization estimates that there could be as many as 6,800 in the next ten years.<40> As good as a hospice program is in meeting the needs of the dying, certain aspects, such as a revulsion against high-tech medicine, raise further questions: will hospice care be denied to the elderly who are already on ventilators or who are good candidates for mechanical ventilation, which will increase their comfort as it prolongs their lives? As lndfhar has already stated, the ventilator-dependent elderly are virtually unweanable. In 1983, Buckingham found that there were no hospices specifically designed to care for the terminally-ill geriatric patient (41). Others ;)./ 0

PAGE 214

... l't ) fft t w .......... M f ( ; tW1111,N-'lil .... Wlll: ......... -h _,,...,_..,_, .,.......,...,_,....,,,,,..,wv-,.Mww1i1w.w"rwwwwwwwww1t,w-...,,-,-.,-,w,wwwwww.wWwww~w.....,111i1w.,a,.., D ltht .a w ..... .,._,,~..,._......,.~.,..,_,..,._,, .... .., -.., ,:, .. .. ''jl"'. -.~ ( OTA Task 4 Contract 533-4935.0 l O/ O,fJff) 411 -45 -report that more who turn to hospice care are suffering from pulmonary diseases ( 40) So the f ssue of whether or not to admit to the hospice the ventilator-dependent elderly will be increasingly evident and be added to a list of other issues crying for public debate. Most hospice programs are home-based and offer evidence of the substancfal savings in cost similar to those home-based programs set up for ventilatordependent persons who are chronically-ill and disabled. A study published last year in the Journal of Risk and Insurance reported that the average cost over six months fora patient in a home-care hospice was $1,319, compared with $8,ssg in a municipa 1 hospita 1 ( 40). The families of those who are tenninally-111, not in a hospice program, and unable to afford continuous care in a hospital or long-term care facility, have to make extreme sacrifices and drastic changes in their own life style. Such indignities must also be assumed by the families of the critically-ill, and the Jha~.eC:. A rerf3'lt TV documer,tary (Fron~line, PBS) '?Se, .. ~d real-life situations in which couples had to spend-down their incomes, sell their homes, and deplete their savings in order to receive public assistance. We are a so~1ety in which the elderly are left to take care of the elderly. Concl usfon There is little direct fnfonnation published or otherwise available on the subject of the elderly ventilator-dependent person. For this discussion, the authors attempted to look at the experiences of persons on ventilators in -, \ ~I

PAGE 215

rwwwt8e:iflifitMHettitWMMMtfMtftfMtfXdtfttrettMettitttlthlMtlflt8MdMtftftttNMt'tNtfMMMMtftftftlMMbfMt!tttft!tttftttftlttMtotttt1Mtft11tl 1 I I ltt I ft 1111 I ft ltt IMM 1 I ttMN 1 I 11t1 ftttx :_ti t t t tt)t'tru,, n, -... .. ; .. ... : .. \, OTA Task 4 Contract 533-4935. 0 1011516~ 0 412 -46 -a wide range of age groups; and the experiences of the elderly who were critically-, chron1ca-11y-, and tennfnally-111 who had respiratory disorders. Using informal fntervfewfng, the author uncovered the issues and obtained ideas for resolving them from those involved, 1.e. elderly on ventilators, families, and caregivers. It was noteworthy that little infonnatfon is available regarding prolonged ventilation and critical illness. Most critically-ill persons either became ten1inally 111 and dfe. A few became chronically 111, and these are the ones who are candidates for prolonged mechanical ventilation. This discussion has identified such issues as (1) the lack of. a positive concern for the right to a life of choice; (2) the lack of understanding about alternative lifestyles, feelings, and values; (3) the practice of decision-makers to be almost totally influenced by the regulations of the organizations for which they work or those of the reimbursement agencies; (4) the failure of nursing homes to provide standards of acceptability; (5) the lack of support'bJ"'refmbursement agencies to failies 'whe,, they play a role fn home care; and, (6) the policy of insurance companies to pay for only high skilled nursing. i J / I The issues that have surfaced come from the experiences of those involved with the care of the elderly ventilator-dependent, i.e. ventilator-dependent persons, family, caregivers. One conclusion that all parties have come to is that there f s a need for a public'forum for the purpose of establishing national policy to resolve these issues. A concentrated effort to identify, mobilize, and coordinate resources can ultfmtely enrich our society and save ; monfes._ ,, .. .. .._ _____ .... --.---.. -----"' / \ ,., .'~ \ .. ~r;.-

PAGE 216

,,. \. (~ .. OTA Task 4 Contract 533-4935.0 10/19/15{) 413 -47 -4) Another Perspective In order to put the above report into perspective, other invited c011111entary was sought. The following opinion was offered by Daniel M. Kenney, Kenney & Associates, Inc.; Fonner Executive, Health Insurance Association of America: "The ventilator dependent patient and the costs associated with their treatment should be of critical concern not to just the public sector, but the private sector as well. The lack of understanding of the problem and the means to assist the patient appear to be the biggest problems. Most insurance executives I know, are totally unaware of this patient population, let alone how to treat them. The fact that many doctors and hospitals have never had any exposure to this type of patient magnifies the problem even more." "Consider the psychological impact on the patient and family members when expressing their concerns about the problem. No one knows how to treat the patient in order to assist them in getting back into the main stream of life, so they stay hospital confined. When the private insurance funds have been exhausted, the public sector is looked to for financial assistance. Many times the public sector financing forces the family to go bankrupt or become fndfgent before assistance is granted. More con-cern "f: exp--~S!Pd with wtio's going to pay the bill versus t. ," -we ass,~t 1ent. begs the question: Is this th~ to deal witn tuc problem? I think most would agree that it is not." The key to making it happen, however, is to get the private and public sectors to make changes in their policies to allow this alternative treatment to be compensated similarly to in patient hospital treatment." The following opinion was offered ~Y Lawrence-C. Morris, Senior VicePresfdent, .. Health Benefits Management, Blue Cross & Blue Shield Association: n general, I think that there are reasons to be optimistic that the problem inherent in the kind of care you are discussing (prolonged mechanical ventilation) are becoming more amenable to solution." .l\3

PAGE 217

( ( OTA Task 4 Contract 533-4935.0 10/15/~~ 0 414 -48 the issue of propriety of treatment is receiving far more attention than ft has historically these questions are now increasingly being brought into the open, and there is reason to think that with widespread use of preadmission review, concurrent review, and other such mechanisms they will continue to be examined." With the increasing focus upon cost effectiveness, I again see reason for optimism. Managed Care0 is growing rapidly, and represents a conscious effort to stretch health care dollars without adverse outcomes. As these mechanisms are complemented with increasing coverage for high technology home health services, individual benefits management (defined as the acceptance of the costs of extra-contractual services when cost-effective), support for a wider range of treatment alternatives seems to be growing." 5) A Final Connentary about the Psychological Effects on Caregivers and Family and the Impact on Dying (Goldberg) Some elderly ventilator-dependent patients are not candidates for home care, and, because of medical or social conditions, require prolonged 1nsti-. tutionalization. The acute care hospital may be appropriate for the initial care and acute stabilization of the ventilator-assisted patient, but a different medical model is required for prolonged care, and acute care professionals do not always understand this model. The patient has needs for early interven~ion\by experts in psychology and rehabpitation"w~ich are impossible and/or difficult to arrange in an institution with an acute care orientation. This lack of attention leads to secondary psycho-social maladaptation, partly due to a dehumanizing environment, and partly due to an inadequate ability to cope with such stress. Without a rehabilitative focus, the elderly person is not prepared for survival for any kind of satisfying life-style. (Alba) Similarly, the family and caregivers need initial and long-tenn psychological and economic support and counselling that may noi be available. This results in abnormal family adjustments and subsequent social and economic disorders ;;;,f

PAGE 218

.:rtt!YSti:titee+tit'Mrtttf#N bl ttt'MtftlMO:etttttitttMWtfMtlMtltftltitltfMt!HtftftfHHMMnftfttMttdMHHtftlHHMMHtfHtdtfHt'.HWtll tt:MHM I I II II lt1 lt1 I I ft I ti I 1 ttrr tttttw a wt r tMt 10 1t1,t,ta\il.;..~ ....... C ,' .... :, OTA Task 4 Contract 533-4935.O 10/15,Qt) 0 415 49 in the family. With prolonged hospitalization of the ventilator-assisted person. the caregivers in the acute care i~stitution become frustrated by unresolved long-term issues that they are not prepared to expect, trained to handle, or willing to deal with. This results in anger, frustration, reduced satisfaction at work, and a lower quality of care. It leads to con flict with the pat"1ent and the family and a discontent that h the breeding ground .for medical liability. Other major concerns are the affect of mechanical ventilation on the cause, timing, and quality of death. If the patient has acute respiratory failure and ventilation is withheld or prematurely withdrawn, the patient will die at some point in time. There is no guarantee how rapidly this will occur nor that this will be a smooth process. As with the decision to use the ventilator. prognostic uncertainty remains the major obstacle. All that is certain is that life 1s a condition with a 1001 mortality" (G. Spencer). The major concern ffJ L :3@ ira "'cute situation is one where an e.. J person may be at hOll'le or in a nursing home and suddenly deteriorate lB. Make). There may be a sudden arrest. no do not resusitate order. and the elderly person is brought to the hospital by emergency medical techni. cians who do. Unde~ these circumstances. the process and timing of death is unnaturally altered. Such a scenario could be avoided if decisions are made prior to the acute event. This should include the elderly person, if mentally competent; if not, the family and physicians should make this prior detenntnatton (B. Make). ""-~---........ -. l : --/" \ l

PAGE 219

fwttHHNt!!'tdt t.hl!_}s"Htit'H>itiht'H)if it >sh' t 'titri,ftftiH ftftNtf ttdHMtrH f dot ecr> (MMM CtdbMMt tOM1MDCM~MNtdndt1htdMM Id fNWNt Nte.aNhllNlC llllftNHRMr, .............................................. ........ -............. ( c OTA Task 4 Contract 533-4935.0 10/1 sfai 0 ,1 i G 50 -Another major concern is the effect that current reimbursement policies (DRG's) will have on the inappropriate continuing or discontinuing of chan1cal ventilation and its effect on dying. Either DRG's will force premature w1thdawal, with resulting death or medical instability, or trans fer to a less-costly site of care, ~here the ventilation may be prolonged -for inappropriatereasons (professional incompetence, economic factors). Although most contributors to the OTA Survey (Task #3) did not expect an increase in the number of elderly patients who require prolonged mechanical ventilation, this anticipated effect of reimbursement policy has already been observed (Giovannoni). In the chronic situation, prolonged mechanical ventilation is not an -emergent, but an elective, decision which usually made by the patient, family, and physician (See OTA Task IS). If this prolongs life. it does so at the desire of those involved to whom this decision will impact and who have decided that it is worth the effort. This desire is crucial for any successful outcome. To most contributors of the OTA Survey, this elective use of prolonged mechan.ical ventilation to enhance the lives of (younger) persons with chronic illness is the most frequent indication and has a favorable prog1:fosis. The incidence of prolonged mechanical ventilation for this patient group is small and is anticipated to remain so. (See OTA Surve11 Task #3)

PAGE 220

t."..-11dllllff#llilll' tflliliNtlllllMMIIIIMtf~MtfililjMtfliilllt'tf111611t1HilMIIMMi116111MWMMtft1111616!1Mai6MHai6MMMMMiMlll6r tftMillift ~ftft..,tMljtOflMllit"i......,llilllt 1111a: Wljf ,....,., 1~1tt~et ,_..., tiw.itWNt ...-o ..,....~..._......, ....... ~...._..,......._._..., __ ..... ~WW11wwwwwwwwwwvw-.w .. 1ia"---....... .. OTA Task 4 Contract 533-4935.0 REFERENCES 10/15L85 000417 -51 -1. Bower AG, Bennett YR, Dfllan JS, et al. Polf0111,Yelftfs report: Investigation on the care and treatment of poliomyel.ftis patient!. Part I: Development of equipment. Part II: Physiologic studies of treatment procedures. Ann West Med Surg 4:559-582, 686-716, 1950. 2. Lassen HCA. A preliminary report on the 1952 epidemic of poliomyelitis in Copenhagen with special reference to the treatment of acute respiratory insufficiency. Lancet 1:37-41, 1953. 3. Hilbennan M. The evalulation of intensive care units. Crit. Care Med. 3: 159-165, 1975. 4. Asmundsson T, Kilburn KH. Survival of acute respiratory failure. Ann. c !ntern. Med. 70:471-485, 1969. 5. Rogers RM, Weiler C, Ruppenthal B. Impact of the respiratoryfntensive care unit on survival of patients with acute respiraory failure. Chest 62: 94-97, 1972. 6. Bigelow DB, PettJ TL, Ashbou~h DC, et al. ~Jte respiratory failure: Experiences of a respiratory care unit. Med. C11n. North Amer. 51:323-340, 1970. 7. Weg John G. / The Respiratory Intensive Care Unit. In Major Issues in Cri tical Care, edited by Joseph E. Parillo & Stephen M. Ayres, Chapter 6, pp. 61-69, 1984. Williams & Wilkins. 8. Thibault GE, Mulley AG, Narnett GO, et al. Medical intensive care: patients, interventions, costs an4 outcomes. N. Engl. J. Med. 302:939, 1980 I ... \ \

PAGE 221

~"-..-a1Nu~wwa~~~o~.abit1Mtf tbtlMMHntMMtftf fttMMtlMtftftfMtdtfthMltftfMtctltftttltft(tt't 7 ( x O 1 t 1 NVtf ft t1 X Mt tr M tr M 1 I ( ( OTA Task 4 1 o'9sOElf4 i 8 Contract 533-4935.0 -52 -9. Cullen D, Ferara L, Briggs B, et al. Survival, hospitalization charges, and follow-up results in critically-ill patients. N. Engl. J. Med. 294:982, 1976. 10. Parno JR, Teres D, Lemeshow S, et al. Hospital charges and long-tem survival of ICU versus non-ICU patients. Crit. Care. Med. 10:569, 1982. 11. Cullen DJ, Civetta JM, Briggs BA, et al. Therapeutic intervention scoring syst: A method for quantitative comparison of patient care. Crit. Care !!!! 2:57, 1974. 12. Caapion EW, Mulley AG, Goldstein RL, et al. Medical intensive care for the elderly: A study of current utilization patterns, costs, and outcomes. JAMA 246:2052, 1981. -13. Thibault GE. The Medical Intensive Care Unit: A five-year perspective. In Major Issues in Critical Care, edited by Joseph Parillo & Stephen_M. Ayres, Chapter 2, pp. 9-15, 1984, Williams I Wilkins. 14. Campion EW, Mulley AG, Goldstein RL, Barnett GO, Thibault GE. Medical in tensive care for the elderly: A study of current use, costs and outcomes. JMA 246:2052-2056, 1981. -) 15. Knaus WA, Draper EA, Wagner DP. Evaluating medical-surgical intensive care units. In Major issues fn Critical Care, edited by Joseph E. Parillo and Stephen M. Ayres, Chapter 4, pp.35:59, 1984, Williams & Wilkins. 16 Knaus WA, Zinnennan JE, Wagner DP, Draper EA, Lawrence DE. APACHE -Acute physiology and chronic health evaluation: a physiologically-based classiffcatfon system. Crft. Care Med 9:591-597, 1981. 17. Wagner DP, Knaus WA, Draper EA. Statistical validation of severity of illness measure. 73:878-884, 1983. .. -.., \ t I I f J .a~~

PAGE 222

' ,,. OTA Task 4 10/15/85 Contract 533-4935.0 59 Q O 419 18. Knaus WA, Draper EA, Wagner DP, et.al. Evaluating outcome from intensive care. Crit. Care Med. 10:491-496, 1982. 19. Knaus WA, Le6a11 JR, Wagner DP, et al. A comparison of intensive care in the USA and France. Lancet 642-646, 1982. Snow RM, Miller WC, Rice DC. Respiratory failure in cancer patients. JAMA 241:2039-2041, 1979. 21. Knaus WA, Draper EA, Wagner DP. Prognosis from combined organ-system failure: A national study. Crit. Care Med. 12:239, 1984. 22. Scheffler RM, Knaus WA, Wagner DP, et al. Severity of illness and the re lationship between intensive care and survival. AJPH 72:449-454, 1982. -23. Scitovsky AA. The high cost of dying: What do the data show? Milbank Memorial Fund Quarterly/Health and Society 62:591-608, 1984. ( 24. Byrick RJ, Mindorff C, McKee L, Mudge B. Cost-effectiveness of intensive care for respiratory failure patients. Crit. Care Med. 8:332-337, 1980. 25. Law Refonn Connission of Canada. Edward Keeserlingk. 26. Make B, Gilmartin M, Brody JS, Snider GL. Rehabilitation of ventilatordependent Jects w1t h,119 oisea~es. {11est 8G:358-365, 1984. 27. Goldberg AI. Fellowship Report #20. Home Care Services for Severely Disabled People. Case-Example: The Ventilator-Dependent Person. World Rehabflitatjon Fund, Inc., New York, 1983 {Available from Dianne Woods, Project Director, 400 E. 34th Street, New York. NY 10016) 28. Hughes RL. Home 1s the Patient: A word of caution. Chest 86:344, 1984. 29. Goldberg AI. The regional approach to hOlllt! care for life-supported persons. Chest 86:345, 1984 .. -.... / I I '.

PAGE 223

~,tFt11NMtt,-.tiMl'5ii6CMiililrt:iWutreenwettuetihMtftttiftWWMWttntn:ett1thtn1t01ttt n rn ttt wuurtts: we: ::: ttr : I lttMMM&CMtt MMM 'rt CMM b fdMW 1 db 1 1 0:21~ f I l<lM>dt .:,.~_..! .. .... .r~~~-, .. :.._:.~--:-t ... ... OTA Task 4 10/15/85 Contract 533-4935.0 0. 0 0 /~ 0 ,; -54 -;.1: 1 ~ V 30. Detsky AS, Stricker SC, Mulley AG, Thibault GE. Prognosis, survival and the expenditure of hospital resources for patients in an intensive care unit. N. Engl. J. Med.:667-672, 1981. 31. Goldberg AI, Faure EAM. Care for life-supported persons in England: The Responaut Program. Chest 86:910-16, 1984. 32. U.S. News and World Report, May 9, 1983, p. AlO 33. Splaingard ML, Frates RC, Harrison GM, Carter RE, Jefferson LS. Home Positive Pressure Ventilation -Twenty Year's Expierience. Chest 84:376382, 1983. 34. Parker, Rosetta E. Housing for the Elderly, p. 9, 1984. (Institute of Real Estate Management Monographs) 35. NRTA News Bulletin 26 #7:1,3,8, July-August, 1985. ( 36. Feldman, J. and Tuteur, P.G Mechanical Ventilation: From Hospital Intensive Care to Home. Heart and Lung 11 #2:162-165, 1982. 37. Feldman and Tuteur. Ibid. pg. 162, 164 38. Parker, RE. Ibid. pg. 47,53. 39. Proceedings from an International Symposium, 11What Ever Happened to the Polio Patient? EAM Faure and A. I. Goldberg, (eds) Northwestern University, Chicago, 198~. (Available from Eli Henfng, Education and Training, Rehabi11-I tation Insti"tute of Chicago, 345 E. Superior Street, Chicago, IL 60611. 40 Maloney, Lawrence D. How Hospices Ease Last Day of the Dying. U.S. News and World Report, Feb 11, 1985. 41. Buckingham, Robert W. The Complete Hospice Guide, p. 116, 1983, Harper & Row. 42. Consumers Research, pg 2,May, 1985. 43. Peggy Beckeman. The greatest gift: know I dfd all I could". U.S. News ; and World Report, pg. 71, Feb 11, 1985 t .. ,.''\. \ \

PAGE 224

Contract 533-4935.0 I ,I ....... .... --... ... ... ... .---.... .__,_ .... --. I .. I (.t' : l TASK 4 APPENDIX \ 000421 -~./

PAGE 225

,~ r~t-Y.'IJ/l,./l lf-..o6:?SSO.?.OO,O C :ITK"AI. <.'9Aat MUJMT,11,E ,IP)ript ic; 1'115 II)'~ Willi:uns& Wilkins Co. oooi122 Vol.13. Ne.I Print,,/ in (.'.S 4. Dutcom.e of respirato.ry intensive care io1the elderly :ICHARD F. Mc-LEAN. MD: JULIE D. Mc-lNTOSH. CCHRA(C): GEORGE Y. KUNG, BScE, CCHRA(C); ,AVID M. W. LEUNG, CCHRA(A): ROBERT J. BYRICK. MD, FRCP(C) .\\'e follo"ed 1018 patients admitted consecuthely to multidisciplinary respiratory ICU (RICU). with spe:al attention to patients aged 7S )T and over. The derly bad a higher RICtJ (11/49) and in-hospital (21/ )) mortalit) than younger patients. The 28 suni,ors a hospitalization had a lo"er acute physiology score \PS) than nonsunivors on admission ( 16.J :t 7.8 vs. 1.8 :t 8.9. respectively), indicating less severe illness. ne quality or long-term sun-hal ( 12 to 24 months) "as ssessecl usina an open-ended questionnaire. Eighteen ospical sur\'i,ors "ere alhe at the time or follo"-up .nd the quality of life "u deemed satisfactOI') b)' 10 or 3 patients "ho "ere IMng independently. Only h\-o of .:8 sunivors had been transferred to nursin1 home care. ;nd 111 ere in acute care hospitals. We conclude most elderl) patients discharged from he RIClJ consider their lif est)le satisfactOI') and are ;101 a larae drain on community health care resources. Funbea: studies of the screening process "hich determines RICU admission are necessary, because unimodal criteria such as age and APS after admission were not or prognostic ,alue. The elderly are increasing in both absolute and pro-ponionaJ numbers. and in the future they will use a greater proponion or health care resources. In respiratory ICUs (RICUs). costs are high, and data on the prognosis of elderly patients with respiratory failure may help in developing strategics for resource utilization in critical care areas. A number of studies'_. have described outcome of intensive care; however, few have specifically concentrated on elderly patients. This study reviews sh()n-term and long-term out comes or RICU patients. panicularly those patients 1S yr and older requiring ventilatory support. SUBJEC'TS AND METHODS The RICU is a 14-bed multidisciplinary unit. super vised and staffed by members of the depanmcnt of anesthesia. The unit's nursing staff provides one nurse per patient. Indication for admission is the requirement for mechanical ventilation and/or invasive hemodynamic monitoring. With all admissions the primary physician (medical or surgical) decides that intensive care is appropriate, and requests an RICU consulL If the RICU stafT agrees that ~here is a potentially revers ible cause of cardiorespiratory failure. the patient is admitted. Neurosurgical patients are cared for in a separate ICU pnd were not pan of this study group. All other patients requiring ventilatory suppon are cared for in the RICO. S111dy Design We studied all patients admitted to the RICU between April 1, 1982, and March 31, 1983. For each patient the following information was documented: primary diagnoses noted by the RICU staff at the time of admission according io the ICD-9 classification.' age. sex. the duration of ventilatory suppon, length of RICU stay, total length of hospitalization. and survival of both RICU and hospitalization. The chans of elderly patients (75 yr or older) were ~viewed, and an acute physiology score (APS)6 wa.~ calculated for those patients remaining in the RICcl longer than 12 h, using data from the first 24 h of their RICU stay. APS is a physiologically based classification system used to assess severity of illness in critically ill patients. I 1"spi1a/ and RICU St. Michael's Hospiial is a 701-bcd. tertiary care racility affiliated with the University of Toronto. It is located in Toronto. a city of 2.500.000 people. All suraic:al and medical subspccialties are represented in this facility. The elderly patients were broadly classified into fiye subgroups, as follows: group I-postoperative cardiac surgery (elective and emergency): group 2-postopera tive noncardiac elective surgery. including general and major vascular surgery: group 3-postopcrative emer gency noncardiac surgery: group 4-postoperative complications admitted Jrorn the wards. emergency dcpanment. or transferred from other facilities: and group 5-nonopcrative admissions (medical and surgical}. Fram the Dep:anmcnt or Anaesthesia. St. Michaers Hospital. Ton,nto. Ontario. Canada. Addma n:quests for n:prinas 10: Dr. R. J. Byrick. Dcp:anmen, or Anaesafaesia. SL Midmcrs Hospilal. JO Bond Sln:et.. Toronto. 'Onlario.. Canada MSB I WI. \ 625 The survivors or hospitalization in the elderly patient group were contacted by telephone by one of the au thors (R.M.) 12 to 24 months after discharge. An openended questionnaire was used to ascertain the following information: present living situation: functioning activity staius at the time of follow-up: number of hospital-

PAGE 226

( ( 626 nmC"AL CARE MEOIONE ;zai.ions since u,5'.nargc: frc4ucn~y of physician .~a..,; attitudes toward5 present quality of life: and willingness. under the sam~ circumstances. to undergo similar ther apy again. Finally. we documented all non-ncurosurgical hos pital deaths during this I-yr period. in order to compare the number or hospital deaths to the number of RICU ~eaths in similar patients aged 75 yr and over. S1ati.t1ical Ana(rsis Data were expressed as mean I SD. Differences between groups. were evaluated using an unpaired ,. test. and the Chi-$Quare test was used to compare proponions between RICtJ sur\'ival and nonsurvival groups. A p-value under .OS was considered significanL RESULTS During this 12-month study period 84% of the 1018 patients were postoperative admissions. The nonoperative RICU admissions (16%) were transfers from the wards. emergency depantnent. or other hospitals. The largest single group (63%) was composed of postoper.;. alive cardiac surgical patients, who had an overall hos. pital monality rate of 5.4%, including emergency and elective C3SC5. The RICU mortality rate was 11.2%. and a further 6. 7% died after RICU discharge. The hospital monality rate was significantly (p < .005) higher in elderly patients than in the rest of the patient population. There was. however, no difference in hospital survival between patients aged 75 yr and older anti the~ aged 65 to 74 yr (Table I). Both the RICU and ho "'al average lenrth of stayc were significantly longer 10r lheSt two g1c,ups than 1or younger (under 65) patients. Figures I and 2 show the RICU average length or stay (ALOS) and duration of v.entilation for the elderly population compared to the rest of the RICU patients. TAIi. I. Comparison of data rrom specirac aie poups TOlal RICU Ap(yr) Admissions Survivors Unknown s 2 0-19 4 4 20-34 50 47 35-44 102 9S 45-54 213 203 55-64 377 342 6S-74 213 170 .t7S. ,:, 54 41 iiii iM ()\-erall mean. J:..ider(I Patient Popt1/a1ion Fony-nine patients 75 yr of age or o,er accounted for S4_ RICU admissions. The majority (83%) of admissions in this group were noncardiac surgical patients: by comparison .. only 30% (331 /964) of younger patients were admitted after noncardiac surgery (p < .005). Table 2 shows the distribution or elderly admissions by source or referral; the.re were no significant difTer ences in survival between these groups. Only one of nine postoperative patients admitted to the RICU from the wards (group 4) survived hospitalization. Postoperative complications prompting R:ICU admission in this group were: renal failure (three cases) .. pulmonary edema (two cases), cardiopulmonary arrest (three cases). and aspiration pneumonia (one case). The cause of death_ in the entire group. of elderly patients was frequently multiorgan failure characterized by cardiorespiratory anest (nine cases), sepsis (three cases), renal failure (four cases) .. and pulmonary edema (three cases). The mean APS in this elderly population was 18.& 8.6 for the first 24 h after admission. Survivors had a significantly lower APS ( 16.1 :t 7 .8) than nonsurvivors (21.8 :t 8. 9). None of the five patients who received hemodialysis in the RICU survived hospitalization. .RICU Utili:a1ion There were IO 18 non-neurosurgical admissions for whom data collection was complete: their Rl'tU ALOS was 4.3 :t: 8.1 days. yielding a Jotal of 4377 RICU bed days. Patients 75 yr and older accounted for 437 ( 10%) RICU bed days but only 54 (approximately S % ) RICU :1dmissions. During the study period there were 188 in-hospital deaths of non-neurosurgical patients aged 75 yr or older who could have been referred for RICU admission. Twenty elderly patients died in hospital, having been admitted to the RICU. Thus. .. in-hospital" monality of Hospilll Awrqe l..cn&th of Slay SurviOl'S RICU Hospital (days) (days) 2 S.6 :t: 9.7 19 ::t 11 3 1.0 ::t 0 'IS.I ::t 14.4 44 6.3 ::t 10.S 27 .6 ::t 35.4 93 3.0 ::t 5.S 17.7 ::t 20.7 195 2.6 ::t 4.9 15.4 ::t 19.2 324 3.S ::t 5.6 19.8 ::t 23.6 146 6.8 ::t 11.7 21.4 ::t 34.8 29 7 ::t 13.1 32.3 ::t 45.6 iji 4.3 ::t 1.1 21.5 ::t 27.,. i f l l 1. I L l f J f I I I f I I I i i I

PAGE 227

; --_t .. ~. ~. _. .,, .. '. : '' ''... .... 1 ~-: ... ( -. ( O O 0'424 Vol. 13. No. 8 AlcL1.'tlll ('I a/-RBl'~RATORY ISTENSIVE (' ARE OUTC-OME FOR ELDERLY 627 patient~ who had been admitted to RICU repreM-meea J0.6S ofthc 188 comparable non-neurosu..-gical deaths in this age group. ELDERLY & GENERALPOPULATION UtCIN CF SIAT IN 101 ..... .... ._., a II ........... .................................................. ,,... .... I I I I I t I I U 1111 FIG. 1. Lenath of RIClJ suy ror lhe elderly compared to that ror the enti~ population. ELDERLY & GENERAL POPULATION CUtAtlDN rF E1111LATIDI 'II I NtlOffS -~: lift' a I I ....,.&.a.wa..i..._..-...., ...... ....... ~.--.. -.,~ .. ... FIG. 2. Duration ot ventilation of the elderly compa,ed to that of the encite population. TAau l. Elderly subpoups Admiaioa C'haracleristics Oroupl No. "'patients 7 .(yr) 76.9 :t 2.8 ICU a~ lcnath otay 3.9 :t 1.6 Duration or vcntilalion (days) 2 :t 1.2 APS 17.3 :t 6.6 ICU IUMYOl'S 7 ICU ladmiuions 0 Holpitll survivors 7 Paint initially admialCd in poup 3. '"-\ '-"''o 7 ""'' Follow-Up Table 3 summarizes the 12to 24-month follow-up results. All survhing patients were inten'icwed. Six of the 14.long-term suni,ors were from groups 3. 4. and S and, therefore. not elective surgical admissions. Their admission diagnoses included per(orated bowel. pulmonary hemorrhage. leaking abdominal aonic aneu rysm (two cases), post-trauma, and cardiac arrest with pacemaker failure. Of the 14 patients living in the community without assistance. ten were living alone or with spouses. One patient had been house-bound for 6 months before follow-up. and three were dependent on children to varying degrees. No patient required.communit) assist ance at home. Six of these 14 patients rated their acti\'ity level as higher or the same as their premorbid state Ten or 13 said they would un.dergo similar treatment apin. and 11 of 13 patients believed their quality of life was acceptable and wonhwhile. Only two of these 14 patients had been readmitted to the hospital since discharge. The two patients in acute care hospitals at the time or follow-up had complicated postdischarge courses and were not expected to survive the present illness. DISCUSSION A preliminary study1 in our unit showed that RICU survivon were functioning independently. in society 8 to IO months after discharge. The present stucly specifically evaklated outcome in a Jarger group or elderly RICU survivon. Our findings agree with other studiesu.1 showing the elderly to have a higher short-term as well as long-term monality rate compared to younger patients. However it is difficult to compare statistics from difTerent studies because or differences in patient populations. For ex ample. in the study by Campion et al. 1 of medical intensive care, the cumulative mortality for patients over 75 yr or age was 44 9' at I yr-primarily related to myocardial infarction: however. 71 or these patients were admitted for monitoring only. and only 31% of these required even one intervention. In contrast. all of Oroup2 Oroupl Oroup4 Oroup5 II II 9 14 78.6 :t 4.4 80.5 :t 4.7 78.7 :t 4.4 78.5 :t 4.5 3.0:t 2.1 14.4 :t 25.9 5.4 :t 4.1 7.7 :t 9.5 2.3 :t Z3 13.1 :t 25.9 4.6 :t 2.5 6.2 :t 8.7 13.6 :t 4.6 17.6 z 8.2 20.9 :t 6 22.9 :t 11.3 II I 4 II 0 0 l 2 .. 7 6 ~r/

PAGE 228

-. ( ( l ...... .. i. ... Tit ':::O' 'ZW'.Mtrz-~--. 628 C'RITIC"Al CARE Mf;DIC'INE T All... ). Li(c-M~ln ,.f IS R IC"l.l 5Ur\ hms 11 to 14 mnnths aftnhospittl disdlar,c Oroup I (n 7) On,up l Cn II) Oroup 3 en 11) Oroup 4 (n 9) Group S f n 14) Livinaat Hom.:ith Comm unit}' Scnic:cs s 3 4 livin1 in Nursing Home 2 In-Patients in an Acut~ Can: Hospital l P:atimt lft'iousl~ admitted in group 3. therefore rounttd twice. our RICU patients required interventions such as ane rial cannulation. ventilatorv suppon. and/or in\asi\e hemodynamic monitoring of cardiorcspiratory ,-aria-bles. Knaus et al.' emphasize that the need and potential benefit of intensive care arc detcr,ninccl by the acti\-C disease process. the severity of illness. the patients prcmorbid health status before PJCU admission. the efficacy of a,-ailablc thmtpy. and the patienfs age. To clarify the limits of our therapeutic capabilities in el derly RICU patients.. investigators need a common currency to describe various disease processes. health status. and severity of illness. The APACHE system" shows that acute physiologic abnormalities (as measured by the APS) have the same effect on monality in i vdticty of teniary care cellters. Our mean APS for elderly hospital survivors was lower than for elderly nonsurvivors (16.1 :t 7.8 vs. 21.8 :t 8.9. respectively). Our overall APS ( 18.8 :t 8.6) and in-hospital mqnality rate for elderly patients suggest a 11= ,e, mortalit: rite adjusted for severity of illness thaa, for comparable groups of younger patients. 1 Thus, elderly patients ap pear to have a greater risk of dying for any severity of disease process (APS), presumably related to a decrease in physiologic reserve with aging. A revised version of the APACHE system iiccommodat~ age as an independent risk factor. In a large survey of ICU utilization .. the overall age distribution was not dissimilar from that an the general hospital population. except for slightly fewer ad mis; sions above age 70 yr. this trend was also noted by Campion et al. 1 and suaests that physicians may be less agressive when treating acute problems in elderly patients. In our study the majority of elderly patients dyina or non-neurosuraical causes were not admitted ror RICU care. This suggests that an active screening process by primary physicians already exists in our hospital. Our study found thai most elderly Rcu survivon wen: indcpcndmt (Table 3) and considered their quality .. or lifr satisfactory .. similar to younger vatients. 7 5 prisingly .. Table 2 sho\\'S that the elderly sunhors were not all in the low-risk elccthe cardiac and nonc3rdiac surgical groups admitted to the RICU (groups I and:?). In fact. 13 of 28 eldcrl)' hospital sunhors were in the high-risk groups: emrrgenq noncardi3c surgic:il admis sions (group 3). postopcrathe complications (group 4 ). and nonoperative admissions (group S ). Guidelines to identify patients who clearly do not benefit from RICU care are needed. Draper ct al. 111 suggest that in multiorgan failure. survhal becomes unprecedented when three or more organ system failures persist for over 48 h. In our elderly group no dialyzed patients with respiratory .failure and renal fail ure suni\ed. Howe,er.~ this type of criterion must be prospectively evaluated in a large group (we had only fi,e patients). and continually re-e,aluated as improved therapeutic interventions become a,ailable. Our experience suggests that an indi\'idualized ap proach to decision-making by experienced clinicians can result in the utilization of an RICU f acilitr for many patients aged 75 yr and over who will return to a wonhwhile lif estylc. Strategics for resource allocation cannot be based solely on such unimodal criteria as age and APS. although these factors -.-an be used by clinicians to evaluate outcome and improve prognostic capabilities. Results of RICU care arc clearly dependent on the screening process determining patient adm.ission. Most studics-u., 1 12 of ICU costs and effectiveness ha,e fo cused on patient status after admission. Future studies must consider faciors that prompt referral to the RJCU. The most costly ICU admissions arc those patients who have unexpected outcomcs.11 In our study. elderly readmissions to the RJCU (group 4) had a \'Cry poor outcome (Table 2). Whether unexpected complications -could have been prevented remains speculati\"e. We conclude that most elderly sunivors of respiratory intensive care consider their lif cstyle wonhwhile and are not a large drain on community health care resources. Rationing strategics for the RICU need to consider the screening process. including the patienf s chronic health status as well as postadmission data. REFERENCES I. Campion EW. Mulley ACi. Goldstein RL d al: Medical intensh,-e care for.the elderly. JA.11.-a 1981: 246:2056 l. Cullen DJ: Results and costs of intensive are. Annth,-siulORJ' 1977: 47:203 J. Cullen DJ. Keene R.. Watanaux C. et al: Results. charges. and benefits of intensive for critic:allv ill patients: Update 1983. Crit Ca" Al/ 1984: ll:10:! 4. Thibauh OE. Mulley AO. Bamett 00. ct al: Medical intensive care: Indications. inlenffltions. and outcomes. N En.el J .II/ 198o-.l02.-938 S. Kupka K: ln&cmational dassiration of' di~ (ninth m-ision). WHO Cl,ronidt-1971: 3~:219 6. Knaus WA. Zimmennan JE. Wapcr DP. d al: APACHE-

PAGE 229

. \ . '. ~ .. I __...., --= :..._ .. I I I Vol. 13. ~o. 8 ,1/,LtYlll <1 a/-RBPIRATORY 11'.'TENSl\'E C-ARE OUTC-OME FOR ELDERLl .-.:;~' 629 acute pll)'SiolasY and chronic tr.11th C\-aluation: A ph)'Siolnskallv bmd clusiration sysaem. C"rit Cllft' .11: ,..$91 7. Byrick RJ. Mindorff C. McKee L et al: Cost-efl'ccti\flell of intaasi\'C en for mpirator) fiailuR paticnlS. Crit Cart AlJ 1980:8:332 a. Knaus WA. Draper EA. Wapcr DP. ct al: Evaluatina outcome hm inleftsi,-e are: A pmiminan. mu~t~tal comparison. Crlt Ct1rt .\lffl 191l: 10:491 9. Knaus WA. Draper EA. Waper DP: E,-aluatina mcdical-surp:al intensive care units. /11: Ma~ Issues in Critical Care. Parrillo JE. # . .. -. --'\ \ ,. A\'lft SM (Eds). Baitimore. Winiams & Wilkins. 1984. pp 3S-~) 10. Draper EA. -Knaus WA. Waper DP. ct al: Pqnosis rrom combined orpn-sysacm failuR. Absar. Crit Cart ,\lt!d 1983: :236 r I. Detsky AS. Saritkff SC. Mulley AO. ct al: Proposis. suni,-al and the c1penditwe of hospital l\eSOUK'ft for patients in an intcnsi\'C care unit. N ~Iii/ J .tlJ 1911: 305:667 12. Siftlel' DE. Carr PL Mulley AO. et al: Radonina intcnsi\'C care physician responses to a resource shonaae-,.. Engl J .\led 1983: 309:1155 .. : .. --"\ :,J r.~ ':. -~ ,~-'ID ..

PAGE 230

,. '., .. ;'.if' .. Contract 533.4935. 0 ,,,,. (_ TASK 4 APPENDIX \ l 000427 .,

PAGE 231

. ( --------------------~--------.: .. IJl't",O.l4'1)/l~/IJl~?5SOl.00,1 C-:ITK"AI. CAIi" Mn~r l",'l')riaf1C11; lfllSh)'ThcWiUiama& WilkiMCo. 000428 Vol.13. No.I Prinlnl ;,, (..". S .. .f. Outcome of respiratory intensive care for the elderly :ICHARD F. McLEAN. MD: JULIE D. MC"INTOSH. CCHRA(C); GEORGE Y. KUNG, BScE, CCHRA(C); ~:\ VID M. W. LEUNG, CCHRA(A); ROBERT J. BYRICK. MD, FRCP(C) _We followed 1018 patients admitted consecuthely to multidisciplinar) respiratory ICU (RICU). "ith spe:al attention to patients aged 75 )T and over. The dert, had a higher RICtJ (11/49) ud in-hospital (ll/ l) mortalit) than ,ounger patients. ne 28 sunivors i hospitalization had a lo"er acute physioloa, score \PS) than nonsunivors on admission (16.1 :!: 7.8 vs. 1.8 :t 8.9. respectively), indicatin1 less severe illness. ne qalit) of long-term sunhal (12 to 24 months) "'as Jsessecl usina an open-ended questionnaire. Eighteen ospital sunivors "ere alhe at the dme of r ollo"-up .nd the qualit)' or life "-as deemed satisfactory b> IO of 3 patients who "ere livina lndependentl). Onl)' t'tl-o of ~8 suni,ors had been transferred to aunin1 home care. ;nd tllo "ere In acute care hospitals. \\'e conclude most elderly patients discharaed from .he RICU tonsider their llfest,le tisfactory and are :aot a tarae drain on community health care resources. Further studies or the screeaina process "hlch deter mines RICU admjssion are necessary. because unimodal criteria such as qe and APS after admission "ere not or prognostk value. The elderly are increasing in both absolute and pro portional numbers. and in the future they will use a piater proportion of health care resources. In respira tory ICUs (RICUs). costs are high, and data on the prognosis of elderly patients with respiratory failure may help in developing strategies r or resource utilization in critical care areas. A number or studies'_. have described outcome or intensive care; however, few have specifically concentrated on elderly patients. This study reviews shon-term and long-term out comes of RICU patients. l)anicularly ihose patients 75 yr and older requiring ventilatory support. SUBJEC'TS AND METHODS The RICU is a 14-bed multidisciplinar)' unit. super vised and staffed by members of the depanmcnt of anesthesia. The unit's nursing stair provides one nurse per patient. Indication for admission is the requirement for mechanical ventilation and/or invasive hemodynamic monitoring. With all admissions the primary physician (medical or surgical) decides that intensive care is appropriate, and requests an RICU consult. If the RICU staff agrees that .there is a potentially revers ible cause of cardiorespiratory failure. the patient is admitted. Neurosurgical patients are cared for in a separate ICU ~nd were not pan of this study group. All other patients requiring ventilatory suppon are cared for in the RICO. S111dy Design We studied all patients admitted to the .RICU between April 1, 1982, and March 31, 1983. For each patient the following information was documented: primary diagnoses noted by the RICU staff at the time of admission according to the ICD-9 classification.' age. sex. the duration of ventilatory suppon, l~ngth of RICU stay. total lenath of hospitalization. and survival of both RICU and hospitalization. The chans of elderly patients (75 yr or older) were reviewed, and an acute physiology score (APS)6 was calculated for those patients remaining in the RICU longer than 12 h. using data from the first 24 h of their RICU stay. APS is a physiologically based classification system' used to assess severity of illness in critically ill patients. I lt1spi1al and RICU SL Michael's Hospital is a 701-bed. teniary care facility affiliated with the University of Toronto. It is located in Toronto. a city of 2,500.000 people. All surgical and medical subspecialties are represented in this facility. The elderly patients were broadly classified into fiye subgroups, as follows: group I-postoperative cardiac surgery (elective and emergency): group 2-postoperative noncardiac elective surgery. including general and major vascular surgery: group 3-postoperative emer gency noncardiac surgery: group 4-postoperative complications admitted from the wards. emergency department. or transferred from other facilities: and group 5-nonoperative admissions (medical and surgical). From 1he Dcpanmcn, of Anaesthesia. SL Michael, Hospilll. Toronto. Ontario. Cauda. Addrm n.-qUCIIS for ~nts to: Dr. R. J. Byrick. Depanmcnt of AnaesdlCSia. St. Mid1acrs Hospital. JO Bond Sln:et. Toronto. Ontario. Canada M$8 I WI. \ I 625 The survivors of hospitalization in the elderly patient group were contacted by telephone by one of the authors (R.M.) 12 to 24 months after discharge. An open ended q~estionnaire was used to ascertain the following information: present living situation: r unctioning activ ity status at the time of r ollow-up: number of hospital.,

PAGE 232

.. ( ( I I I --... ....._ 626 OtITTCAL CARE MEDICINE izations since discharge: frequency of physician visits: attitudes towards present quality oflife: an
PAGE 233

L ( .. ( ti -I I ......... Vol. 13. No. 8 A/cu'tlll l.'I al-RESPIRATORY l?\TENSIVE C"ARE OUTC-OME FOR ELDERLY patient~ who had been admitted to RICU represented 10.6~ of the 188 comparable non-neurosutgic:al deaths in this age group. ELDERLY & GENERAL POPll.ATION U:ICtN If' StAI IN 101 ... ,., ... ~-811' II I I I 11 II, I I Hlllllt ... -FIG. I. lcnalh o( RICU saay for lhe elderly compared to dial for the entire population. ELDERLY & GENERAL POPllATION UAtlGN r, w,munDN ,..,.._._,._, ... ....., ___________ -I ~= Afl-'. I t t I I I,' I 7 I I II II II M It FIG. 2. Duration of ,,_..tilation of the elderly compared to that of the entiae populacioll. TAIL l. Elderly subp'Oups Admillion C'haraclerisaics Groupl No. of petienlS 7 Aae(yr) 76.9 :t 2.8 ICU 1\fl'ale lenath otsaay 3.9 :t 1.6 Dur:11ion ot ventilation (clays) 2 :t 1.2 APS 17.3 :t 6.6 ICU survivon 7 ICU ladmissions 0 Hospital survivors 7 Palicnt iniailll) admitted in aroup 3. \ \ Lm1g-Term F,1l/ow-Up Table 3 summarizes the 12-to 24-month follow-up results. All suni\'ing patients were inteniewcd. Six of the 14. long-term survi,ors were from groups 3. 4. and 5 and. therefore. not elective surgical admissions. Their admission diagnoses included perforated bowel. pul monary hemo1Thagc. leaking abdominal aonic aneurysm (two cases). post-trauma, and cardiac arrest with pacemaker failure. or the 14 patients living in the community ,\ithout assistance. ten were living alone or with spouses. One patient had been house-bound for 6 months before follow-up. and three were dependent on children to varying degrees. No patient required community assist ance at home. Six of these 14 patients rated their activity level as higher or the same as their premorbid state Ten of 13 said they would u~dergo similar treatment again. and 11 of 13 patients believed their quality of life was acceptable and wonhwhile. Onl) two of these 14 patients had been readmitted to the hospital since discfwae. The t'O patients in acute care hospitals at the time of follow-up had complicated postdischarge courses and were not expected to survive the present illness. DISC'U91ON A preliminary study7 in our unit showed that RICU survivors were functioning independently. in society 8 to IO months after discharge. The present stuay specif ically evaluated outcome in a ,aracr group of elderly RJCU survivors. Our findings agree with other studies1.u showing the elderly to have a higher shon-term as well as long-term monality rate compared to younger patients. However it is difficult to compare statistics from difTerent studies because of differences in patient populations. For example. in the study by Campion et al. 1 of medical intensive care, the cumulative monality for patients over 75 yr of age was 44% at I yr-primarily related to myocardial infarction: however. 719' of these patients were admitted for monitoring only. and only 31 % of these required even one intervention. In contrast. all of Oroup2 Cirourl Oroup4 OroupS II II 9 14 78.6 :t 4.4 80.5 :t 4.7 78.7 :t 4.4 78.5 :t 4.5 3.0 :t 1.8 14.4 :t 25.9 5.4 :t 4.1 7.7 :t 9.5 2.l:t2.3 13.8 :t 25.9 4.6 :t 2.5 6.2 :t 8.7 13.6 :t 4.6 17.6 :t 8.2 20.9 :t 6 22.9 :t I 1.l II 8 4 II 0 0 3 2 8 7 1 6 2.~o

PAGE 234

( -. ( l I 628 C"RITIC'"AL C"ARE ~IEDIONE TAIi.i: ). Lift"-st)lcs or 18 RIC1J suni,-nn 12 10 ~4 months :after hospital disdla. Oroup I (11 7) Oroup2 (n 11) Oroup 3 (n 11) Oroup 4 (n 9) Oroup S (n 14) Livina1t Homt"\\'ith Communit) Senia:s 3 4 :? Tf Livin1 in Nursin1 Home ln-P:aticnts in an AC'Utt C~re Hospital 2 Pat~na pmiousl) admitted in aroup J. t~refo~ counttd t\\'ic:e. our RICU patients required interventions such as anerial cannulation. ventilatorv suppon. and/or invasi\e hemod~namic monitoring of cardiorespiratory ,-aria-bles. Knaus et at emphasize that the need and potential benefit of intensive care are det~ined by the acti,e disease process. the severity of illness. the patient's premorbid health status before RJCU admission. the efficacy of a,ailable therapy. and the patients aae. To clarify the limits of our therapeutic capabilities in el derly RICU patients. investigators need a common currency to describe various disease processes. health status. and severity of illness. The APACHE system" shows that acute physiologic abnormalities (as measured by the APS) have the same effect on monality in a variety of teniary care centers. Our mean APS for elderly hospital survivors was lower than r or elderly nonsurvivors ( 16.1 :t: 7 .8 vs. 21.8 :t: 8. 9. respectively). Our overall APS ( 18.8 :t 8.6) and in-hospital mqrtality rate for elderly patient$ sugest a higher monality rate adjusted for severity of illness than for comparable groups of younger patients. 1 Thus, elderly patients ap pear to have a greater risk of dying for any severity of disease process (APS). presumably related to a decrease in physiologic reserve with aging. A revised version of the APACHE system a~ommodat~ age as an independent risk factor. In a large survey' or ICU utilization. the overall age distribution was not dissimilar from that an the aeneral hospital population. except for slightly fewer ad mis-. sions above age 70 yr. This trend was also noted by Campion et al. 1 and sugesis that physicians maY, be less agressive when treating acute problems in elderly patients. In our study the majority or elderly patients dying of non-neurosuraical causes were not admitted for RICU care. This sugestS that an active screening process by primary physicians already exists in our hospital. Our study found that most elderly R.JCU sunivors were indepcndt.nt (Table J)and con.sidered their quality ... \ \ or life satisfactory. similar to younger patients.1 Sur prisingly. Table 2 shows that the elderly SUf\'i\'Ol'S were not all in the low-risk electi\e cardiac and nonc:irdiac surgical groups admitted to the RICU (groups I :ind :?). In fact. 13 of 28 elderl) hospital sunhors were in the high-risk groups: emeraenq noncardiac surgic:il admissions (group 3). postoperathe complic:itions (group 4 ). and nonoperative admissions (group 5 ). Guidelines to identify patients who clearly do not benefit from RICU care are needed. Draper ct al.' sugest that in multiorgan failure. survi\'al becomes unprecedented when three or more organ system fail ures persist for over 48 h. In our elderly group no dialyzed patients with respiratory .failure and renal fail ure suni\'ed. Howe,er.: this type of criterion must be prospectively e\'aluated in a large group (we had only five patients). and continually re-e,aluated as improved therapeutic interventions become a,ailable. Our experience sup,_~ that an individualized approach to decision-n.aking by experienced clinicians can result in the utilization of an RICU facilit~ for many patients aged 7 S yr and over who will return to a wonhwhile lifestyle. Strategies for resource allocation cannot be based solely on such unimodal criteria as age and APS. although these factors can be used by clinicians to e,aluate outcome and impro,e prognostic capabilities. Results of RICU care are clearl) dependent on the screening process determining patient admission. Most studies1)111112 of _ICU costs and effectiveness ha,e fo cused on patient status after admission. Future studies must consider faciors that prompt referral to the RICU. The most costly ICU admissions are those patients who have unexpected outcomes.11 In our study. elderly readmissions to the RICU (group 4) had a very poor outcome (Table 2). Whether unexpected complications ~ould have been prevented remains speculati\'e. We conclude that most elderly sunivors of respiratory intensive care consider their lifestyle wonhwhile and are not a large drain on community health care resources. Rationing strategies for the RICU need to consider the screening process. including the patient's chronic health status as \\'ell as postadmission data. REFERENC'ES I. Campion EW. Mulley AO. Goldstein RL et al: Medical intensive care for.the elderly. JAM.-t 1981: 146:2056 2. Cullen DJ: Results and COl1I or intensive care. An~sth,~iulog_,, 1977: 47:203 3. Cullen DJ. Keene R. Watcmaux C. et al: Results. clwps. and benefits of intenliv:e care for critically ill patients: Update 1983. Crit C,n Alttl 19M: ll:IOl 4. Thibauk OE. Mulley AO. Bamett 00. et al: Medical intensive cue: Indications. intffi'enlions. and outcomes. N .el J .11,d 19S0-.30l:931 S. Kupka K: ln1em1tional classification of dir.easa (ninth revision). WIIO C/1n111itlr 1978: 3:?:l19 6. Knaus WA, Zimmerman JE. Waana DP. ct al: APACHE-

PAGE 235

( ( ... --rm IE 7 a::m:att Vol. 13. ~o. S .\/,lt"t.111 cf a/-RE.WIIATOll" lt-.'TENSl\'E CARE OUTCOME FOR ELDER~r 6:?9 acute ph, ..... and dln,nic hc::alth evaluation: A ph)'Siololically baed dassiflc:alion S)'SICIII. Crit Cun .,t,'rl 1981: 9:591 7. Byra RJ. Mindorfl' C. McKft L ct al: Cost-cffectiYellell ol intffllive me for respir.atm. failure patifflts. Crit Curr .4/nl 1980: 1:332 ll. Knaus WA. Dr:apcr EA. WnJn\.T DP. ct al: Evaluatin1 outcome fiom intensi,-c care: A pmimi111ry multihospital comparison. Crit Ca" .\ltd 198l: 10:491 9. Knaus WA. Draper EA. Wiper DP: E,11luati111 mcdic:11-surp:al intmsive care units. In: Major Issues in Critical Care. Parrillo JE. ... \ \ ... Ayres SM (Eds). Baitimore. Williams & Wilkins. 1984. pp 35-59 10. DnQ,ff EA. -K111us WA. Waper DP. et al: Prognosis rrom combined orpn-system railure. Abar. Cri1 Car~ ,\ll.'d 1983: 11:236 11. Dfflk) AS. Stricktr SC. Mulley AO. et al: Pqnosis. sunh-al and the o.penditure or hospital moun:es ror patients in an in1msi,'C care unit .V Enif J .llc't/ 1911: 305:667 12. Sin,er DE. Carr PL Mulley AO. et al: Rationina intensive carePtn.'Sician responses to a raoun:e shonaae,, ,i/ J .\l1.'tl 1983: 309:1155

PAGE 236

\ .. C ..... --~ .. .. 000433 I 4~f" .., Califontia Health. Decisions Involving Citizenatn.Bealtb Care Cboicea Recent dramatic headlines have focused public attention on ethical issues in health care: Baby rae Receives a Baboon Heart Patient Seeks Legal Help t~ Poree Hospital to 'Pull the Plug rather Goes on National Television Seeking a Liver Transplant for Bis Daughter Thirty-rive Million Americans Lack Bealth Insurance federal Government Issues 'Baby Doe' Regs for the Treatment of seriously Ill Newborns As medical technology advances, the amount of money availa~le for health care is constrained and as values conflict, ~hese and ot~er situations are becoming more common. Critical choices need to be made about how much should be 1pent on health care and where the money 1bould go. Bow ahould we divide up our tax dollars between programs to prevent disease and those that cure or retard it? Bow sho~ld cate be f,nanced for the medically incli.gent? Most citizens have no id.ea of how choice are made about the a1location of health resources yet thbae choices have a prof~~nd effect on th~ Other questions concern choices affecting aedical treatment. What kind of care i1 appropriate for riously ill newborns? ror terminally ill patienta7 Who-decides when tbe aoat aggressive and sophisticated medical treatments available are not in the best ~nterests of the patient? Ethical, financial and legal questions in health care continue to increase at rapid i:ate.-What we need is a bett-er way to answer them -a vay that involves ordinary citizens. California Health Decisions is a creative new effort to do just that. Di.iring a .. aeries of small v~oup and town ball aeetings, the citizens of orange County will havean opportunity to identify the social values and priorities they think ought to be used as a basi for health policies and profesaional practices. \ \

PAGE 237

.. ( ( PROJECT TIME "TABLE California Health Decisions will hold a training conference for approximately 75 community leaders in October 1985. Following this, small groups and town ball meetings will be used to impart information and solicit public opinion. These meetings will take place in various community locations over a period of aeveral months. The second phase will include broad public dissemination of the issues and recommendations identified during these meetings. In the fall of 1986, Citizens Bealth Care Parliament, consisting of elected community reptesentatives, will meet for two days to formulate.specific tecommendations. The results of the Citizens Health Care Parliament will be published and made available to a wide audience, including health care policy makers and providers atthe local state and fede~al levels. California Health Decisions includes a plan for follow-up and assistance to policy makers and others who are in a position to implement the citizen recommendations genera~ed by the project. PROJECT ORGANIZATION .California Health Decisions is modeled after a pio~eer project called Oregon Health Decisions, held throughout the state of Oregon in 1983 and 1984. ~ur project will take place in Orange County, but it is anticipated tbat other areas in .California will launch similar projects. The Orange County Health Planning Council and the Center for Bioethics at St. Joseph Bealth System, Orange, have collaborated.to develop the ~roject. It will be cond~cted under.the aegis of th~ southern California Health Resources Center, the nonprofit, 50l(c)(3) action arm of the Orange County Bea~th Planning Council. The orange County Bealth Planning Council i the federally-designated Health Systems Agency for orange county. Its 1oals are to increase ~ublic accountabiiity of the health care system and to implement policies which will limit costs while assuring quality aervicea and availability. In orderto emphasize implefnentation as well planning, it established the Southern C~lifornia Health Resources Center, a nonprofit corporation, as its action arm. ... !he Center for Bioethics at St. Joseph Health sistem, orange, offers educational programs and consultation services in bioethics to h~spitals~ n~rsing homes, profesional organization& and associations, as well as professional and.lay persons. 2 \ i

PAGE 238

.. ( ( ASSUMPTIONS 1. The proper development of public policy on health decisions must include consideration of societal values and a way to identify and incorporate those value~. 2. If we are to find long-term solutio~s to high cost medical care and.inequalities in access to care, the problms should be faced and understood by the local conununities. l. An informed public, concerned health profession~ls ~nd a vise, restrained government ate all necessary to open, prudent discourse on health decisions. 4. Increased public awareness of the critical health decisions families must make in the coming decades calls for a special educational effort ~ndorsed and fostered by state and community leaders. 5. The.wishes and preferences of individuals, patients and families should be the central consideration in health decisions. 6. Decisions involving medical treatment and other health care choices should be made in an atmosphere of interactions between individuals/patients, families, and health care professionals. Enactment of legislation and/ot government interYention in these matters should occur only as a last resort. SOURCES OP SOPPOKT Funds to support the project are being sought from foundations, businesses, health-related orgnizations and the general public. Contributions are tax-deductible. All contributors wi~l be listed in the final conference proceedings and will receive spe~ial updates throughout the course of the project. Checks 1bould be aade payable to California Health Decisions and sent to:. I I I California Health Decisions c/o Southern California Health Resources Center 202 Fashion Lane, Suite 219 Tustin, California 92680. I Inquiries should be addressed to Ellen B. Severoni, Pro-;ect Director, at the sameaddress. Telephone number ia (714) 832-1841. 3 \ \

PAGE 239

---:.-:i. ,., .. -., --.............. # ,,.,..,.. ; '. ." t :. ; I' ;. A f ri ildl !IJ II a:: t:1 : It -... ., .~=,,r.1,1r1~1ld1 1;1("''H1l1i ,rr I a .. ~: I I It -JI t?:~-~':: ,-~llililf :.Ii lit'! ~!Ult JIU! .H~-ela-1_ =r. -I r.. i ,1 li e trj ... .. J.. --1 '... i ,:t:.-~. .......... 91!11 .,t;. ,c r-r ... ~-r ti \<<~!<\~1;,;.-~ .,. .. -~--_: !~ 1 I . I .. n ; "' f l . :t.. ..... ,.. j -~-ii o-~->: ~ = _... ,c r II a 8,1 ff~I.I r;a .. = -~,::;;.:,....-==,.... _:_:-.. a s c '= .._ ll I s- .. '.7~t::,~--Ai. f II I -ll-a 1 I ;r,I.. d ,1 0 :r :ii-:---. .. .:-:r t~ -.-,,!:,. ,. 11111 JJ s-... I... iii"' ti :,,~",\ ., "~ ;,}: ;. . =-.. =1 :-. .. ... -,-:'. 4'.~t: r.r>:-;;,,./-~c:W;t-linr d Jh ... !i fit"!' J a111I rrl,u I / ., ... ,.~--_?\ =::~/!r~:-, ;.__ ~:7,::'/ft:;!~ ----~-iil~r[i llilHii' f!iile1 1p .. "' n If (~1:i id; 1 ~ Jf !!rgn ;if 1f t rat t .. ti --~ h. ,ssn11 d 1a-l h:1 1:1.tl1 .Iii : 5 0 e Q C,,.j ,, 1

PAGE 240

,: ....... ,.., .., ..,.... ; .., .... lnl,,.....,ftlld. 1alli9 ...... ........ QIN ..... -~....-....lltltlctalhartllllld ..diclal lddn,ys and rarch II PNONdlnl artUictal Uen, i ............... and tbe lilt .... \ We oaacelw buman Hie lllltllde U. womb. and we can il'lnlplmt emir.Jo from aae .womb into anadtterJ R'Cb ii : ,roCll'!Jnc donlnl. an mend ... m, tbt 1ft IPID, an lenellc lllli ...., a IN lf'I bodies far IOlne futllntnlUITadiaD .. ..,.., ............ wtt.11. no dlclared. -Xever mucla bowledp been mu .. pied with IIUle pklance for Ila ...... .. And ..... lbe asked the .. audience. -wm tbat.pidance come from! -We're bapla, will come from people like JOU-people wbo are inlenlted _,...,, to come out tonilbt.. people wbo are proud of what oar belltll-are l)'a1em bu done bat who are aware tbat t.bere are ligrdlcmt .... t11at need lmprovemenL" Amaal the 228 0nnae County .. cltlllnl wbo turned au& far tbe project' introductory meeUna were dactan, Dmlll and other bealtb-cara s-'esetonela. npreaentatlvel of city pernment,I and ( leat: 10 ardtnary cltlr.cnl-peollke Glarla Dnenpon of Oran,e. '1 think 1t'1 about time far tbe public to be IDYOIYed," llld Daven part. COUDlllar and lnlCruct.cl' at Rancho Santlqo eau.,. In San&a : Ana. wbo deacrlbed the project u an appartmdty far the public to be : awakened to tbe need oo1c at : wbet.btrr we can live or cle with .......... ........ ..,. '1 have a deep concern tbat. ......... be done to make the t public free to make declllom With: out ptUnl lep1 npercuaiom... : .. 111d. 'Tm m:lted tanipt In wlnl the IDtenlt ID pdentoneJ1. : .. the lay public." .' Project dndar ..... a ,.,. ; tl&ered ........... equally m:fted : at the ormclUllaa of the iDeetinl. : wldcb ,...._ tn man thin 80 YOlunteen ...,.. up to Nne u : INUP ladrn. wbo will be trained : to 'IClll&ale tllepubllc meetiDp. : '1'm NIiiy pleuecl puncb. .. Sevenal 111d. -rbe mamentum II : .... Ille ...... timely and tbe : commnalty II eoncerned-lDCI : &bat'1wbat.ltbinkl .. tGn1pt. ( .. UaW DOW, Severaai llid. -rbe Jllc bam't been involYed In : Wltb-care.....,. becaUle people : ... bad. larmal mechntsm to : -lnlluence how bealtb care ii deliY -..I .. ..... ,. Aldloap OrlDI' County II c:ur r.mUy tbe only .,_ tnYOIYed In .. Callfarata Beallh Deciliaal. Sner Gal 111d tiM "t'*ved commt& menll tram llealth plannln, .... 1. cia throusbout tbe 1tate to replicate tbe Oranp County Proj I ecL .... JJ a result of tbe Oregan Health Deciliona project. Severoni. aid. ftve other states allO are now conducting proJedl of their own. and the Prudential lmurance Foundation hu bqun offerin1 pat.a fat "local dedliaa-maldn, tn bioethlcl.. Callfarata Bealtb Decllionl. a nonprofit arpmr.atian with a n -. member actYilory baud. recently received a 115.000 ftnt..y_. sn,nt fram PrudenUaL Severont ltrelled. however, that the put II aaly Ned money for conducUng tbe project and tbal other put applications are bein, made. Sbe added that more than 14.000 in donatkml allo bu been railed from local bolpitall. Referring to the Ore,an Health .. Decislonl project. Severoni 111d t.bat one C011ND1U1 from t.bat proj ect wu Uaat neryaae II enUtled to an adequat.e level of bellth care. The 0repn project'a NCOIIIIINID clatlonl were turned OYer to t.be ltat.e Leplature, but ... llid the Leplature hu llked tbat the project be reinltateda. that tbe arpnilen 80 back to the cltllenl to define ~Y wbat they mean by .. adequate level of care" and how that care ii pma to be paid far. Altboup Severaai na&ld that Jeplatlon may come a result of the California Bealtb Dedlionl' recommedatlolll, abe IGld tbe audience Uaat. "we a cammualty c:an beaiD IO make W declllklal for ounelYel dial will not require leplaUaD. Our bGlpilall are In need ol me l'JtdeUnea on bow we apecl thele (etbical) drfelODI to bemade. Bayley, who .... been warklnc full lime In the field of b6oetblca llnce 1978. pve the audience ID overview of the typea o1 medical and etbical. --Oranp County ftllidenll wW be dfr,...... O\W tbe Dal year. She apoke of rillnl health-cue C0111. _.. tbat nearly MOO 1111-llon a ya, ii DOW apent OIi healtb cue In &bll caun~ and tbat mdl wluall. wbo apelit about 1211 an health are In 1985, apent about 12.l.perpenan In IIN. And lhe apoke -tbe ... of whether Americana haft .... to adeqt111e health care. -. -rbe ....,.. 11 dellnltely -. p aid Bayley, apladnlng tbat. .,. ;-pralimately 30 to 35 million Amert .. am-about aae tn eight people --llawao~~ \ I -ADD WJIID JOU.Daft M MIRA ........... ..., dlflca1t -are t.blll dayl. ..,.,.117 If It II nat a paYe _,...,_ Bealtla care II becM,buP mare a cnn,modf ... ty whether ,-Uke 1tar DOL She added t.bat cuta In prenatal care have led. mmewould Y and I would. agree. to ID IDCNIUI In infant martallty. It II Ironic, I tblnk. that we are cutting back In prenatal care, and yet when a baby II 'born prematurely, buically be cause of eulbacu In prenatal care. we spend enarmoua amountl of money In neonatal lntemlve care units caring far that cbi1cl.. Bayley 111d tbe U.S. Infant mor talit,y rate II wane than In 18 other indUltriallled countrlea .. and far blacu in our cauntry It II twice u bad u It ii forwblta" At the 11111e Ume tlUI fl happen. Ina, me 111d. ..,,. are IPlndinl about DX> million annually tor transplantla beart. Uver, kidneys, pancreas and 10 on. and If tbe supply of orpm lncreales, it II esUmated that we will be apendinl about 13 bDllaa a year. rm not Jlnl tbat'1 bad, rm aytng we need to know what tbe trade-off are." Altboup .. enormous amounts of money" are apent to ave one penon. Bayley aald. -ibere are hundreds of children who are dytna for lack of adequate food and health care n. tbll country, but they are unldentlfted." 1 She recalled Jamie Flake, the i YOIIDI daupter of I Baaton bolpl-1 ta1 admlntlnt.ar who needed a liver ........,1an, few yean qo. Tbe stri' father, Bayley aid, wu a very articulate. any man who knew pubUc relaUona" and who aucceeded In ptUna bll daughter lift!' tnnlplant after taldq bll appeal to the media. But at abam die 11111e time. Bayley llid, tbeN wu a 8-year-old boy In Chicap WbaN motber WU on welfare. Sbe did not hae money, WU not articulate, did not have --. to the media and. Bayley 181d, the boy did not pt a .llertnmplant. '1t 11e1111 to me, tbat II not a fair way-or a ,ood way-to be mlk1n1 decllionl about wbo lbould have aceea to an. Bayley 111d. "We lq,e California Health Declllom Omnty Project~ gm 111 a cbance to be mare IDYOlved In tbe kindl of policlel and under1ytaa : princip1ea we want to IOftffl our healtli-care cbalcel We need to deal with It u a lOclety. "The dec:tllalll we face are clear-ly difficult, cleciliona about who will UYe and who will die, dec:llionl .about wbo wD1 decide who will lle and wbo will die, dec:lllonl about whether health care II a commodity or a right, decialona about trade.offl between billlc care and htlhtecb ..... dlCillaal about laow bealtb Clle lbauld be raUaned ,, ,'.. tt 'hf,

PAGE 241

.. CALIFORNIA HEALTH DECISIONS 000438 ,1 QUESTIONS AND ANSWERS ( ( 1. Wbat is California Bealtb Decisions? California Health Decisions is a project to educate the public about ethical issues in health care and to solicit their opinions and recommendations, so that our health care policies and practices will reflect community values. As medical technology advances, and as costs rise while resources become more scarce, there is an increased need for an organized method of identifying societal values. 2. Where will this take place? 3. Initially the project is being organized and conducted in Orange county; nowever, it is anticipated that other parts of California will initiate similar projects. The California Association of Health systems Agencies bas already solicited our help in organizing projects throughout the state. &ow will tbe project work? The project is structured around a aeries of small group ~iacusaions, Town Ball meetings, and a Citizen's Health care Parliament. The small group meetings will take place in homes, offices, churcbes--anyplace where people gatber--tbroughout the county. They will be facilitated by a group of trained volunteers nd will be held during the months of October, 1985 tbro,ugb February, 1986. A discussion guide will be used to record people's opinions and recommendations. Prom February through May 1986, 12 Town Ball meetings will be held in various geographical areas throughout the county. The purpose of these sessions is to report on the concerns and recommendations identified in the small group meetings, to provide further education on key issues and to solicit additional recommendations. Between June and September 1986, reports of the small group and Town Hall meetings will be compiled and shared with the community at large to receive further opinions prior to the He~ltb care Parliament. In October, 1986, a Citizens Health care Parliament, consisting of community representatives, will meet for two days to formulate specific recommendations. These \ i

PAGE 242

. < / '. \ ( .' ( 000439 CALIFORNIA HBALTH DECISIONS QUESTIONS AND ANSWERS Page 3 6. Who i funding the project? A seed grant of $15,000 was received from The Prudential Foundation. Donatione are being sought from local businesses, foundations, and individuals. 7. Bow will the public know about the project? 8. California Health Decisions will publish a bimonthly newsletter available to individuals for a donation of $5.00 or more. It is hoped that word of the project will spread through those who attend small group meetings. In addition, the media has been enthusiastic about the effort and has published several articles describing California Health Decisions. Ia anyone elae doing aometbing like tbia? California Health Decisions is modeled after a pioneer project ca~led Oregon Health Decisions held throughout the state of Oregon in 1983 and 1984. Since that time, several states have been interested in similar efforts and applied to The Prudential Poundation for 9rant money. Pive states were awarded a grant of flS,000 a year for two years. Orange County is the only county awarded this grant. Tne other states are: Maine, Hawaii, Iowa/Illinois, Idaho, and Washington. The time ia right for a project such as this and the aore activities there are throughout the country the more significant the impact will be, both in terms of recommendations and increased public awareness. 9. Bow can people get involved in tbe project? Those interested in setting up and/or in attending a small group meeting are urged to call the California Health Decisions office at 714/832-1841. The offices are located at the Orange County Health Planning council, 202 Fashion Lane, Suite 219, Tustin, California, 92680. Other ways to get involved include subscribing to the newsletter, attending a Town Ball meeting and making a donation in any amount. \ I I

PAGE 243

., ( I C. CALIFORNIA HEALTH DECISIONS QUESTIONS AND ANSWERS 0 0 11 ._! ,If l\ t? ,.z; 'i ;} Page 2 recommendations will be published and made av~ilab~e to a wide.audience, including health care policy makers and providers at the local, state and federal levels. Following that Parliament, California Health Decisions will continue to exist--as funding allows--to follow up on recommendations and to assist in their implementation. 4. What issues is California Bealt_h Decisions concerned with? 5. Broadly speaking, with ethical issues and health care. Ethics has to do with rights and obligations, with values and principles, with moral choices. aioetbics is defined as the study of the moral and social iaplications of practices and developments in aedicine and the life sciences. Not only individual treatment decisions, but broader issues such aa the allocation of health care resources have ethical implications. Por example, should everyone have access to expensive high-technology medicine, such as artificial hearts? If not, who abould get them? Who should decide? Bow should we divide up our health care dollar between programs to prevent disease and programs to treat it? Bow should care be financed for tbe medically indigent? Other questions concern choices affecting medical treatment. What kind of care is appropriate for seriously ill newborns? Por terminally ill patients? Wbo decides when tbe moat aggressive and sophisticated medical treatments available are not in the best interest of the patient? In -ummary, California Health Decisions will be concerned with ethical issues affecting quality of care, access to care, and the allocation and rationing of health care resources. Wbo is ~rganizing this project? California Health Decisions was initiated by the Center for Bioethics at St. Joseph Health System, Orange, and the orange County Health Planning Council. Its activities are directed by an Advisory Board, and the organization bas applied for a separate nonprofit status. \ l

PAGE 244

( ; \ Care for Life Contract 533-4935.0 0 0 0441 ....--, ..... LIFE SUSTAINING TECHNOLOGIES AND THE ELDERLY PROLONGED MECHANICAL VENTILATION TASK 5. FACTORS INFLUENCING TREATMENT DECISIONS October 15, 1985 Prepared By: Augusta Alba Robert Byri ck Donna Frownfelter Allen I. Goldberg Rita M. Gfovannoni Frank J. Indihar Barry Make Walter O'Donohue Margaret Pfronmer Alan L. Plummer Wil 11111 Prent 1 ce Geoffrey T. Spencer ~J

PAGE 245

( ( Contract 533-4935.0 TABLE OF CONTENTS OFFICE OF TECHNOLOGY ASSESSMENT LIFE SUSTAINING TECHNOLOGIES AND THE ELDERLY PROLONGED MECHANICAL VENTILATION Task 5. Factors Influencing Treatment Decision IntroductioA 3 1) In practice, who makes the decision? 6 2) In practice, what patient characteristics weigh most heavily in decisions regarding the initiation of treatment, weaning, and withdrawal 9 3) In practice, what factors influence decisions regarding transfer of patients from one setting to another? 12 4) In practice, what role does age play in these deicisions? Is this appropriate? 14 5) What characteristics of elderly patients may receive inappropriate attention? 16 6) How are changes in the patient's condition evaluated, and how do these enter into treatment? 18 7) Are decision-makers sufficiently knowledgeabl~ about the elderly and about ventilation? Are they sufficiently open to the various treatment options? 19 8) What is the impact of institutional norms and guidelines re: mechanical ventilation, including "do not intubate" orders and their interpretation? 21

PAGE 246

( <. Contract 533-4935.0 9) How and to what extent do religious beliefs and cultural values influence treatment decisions? 23 10) Is the elderly patient an active participant in decisions about initiating and continuing care and about.weaning? Is she/he able.to give infonned consent? What are the methods of detennining the patient's preference? What is the role of living wills and other advance directive$? 26 11) How and to what extent does practice vary in different parts of the U.S.? 29 12) What is the impact on treatment decision of existing legislation or particular legal precedents? 30 13) How does practice in the U.S. compare with practice in selected other countries? Why and with what results? 34 Appendix A. Appendix B. Appendix C. APPENDICES The Patient's Perspective legal Precedents re: life Support Do Not Resuscitate Orders -The College of Physicians and Surgeons of Ontario

PAGE 247

OTA Task 5 Contract 533-4935.0 LIFE SUSTAINING TECHNOLOGIES AND THE ELDERLY PROLONGED MECHANICAL VENTILATION TASK 5. FACTORS INFLUENCING TREATMENT DECICIONS 10/15/85 -1 -The questions raised by OTA concerning the factors influencing treatment decisions have been answered by a diverse group of experts with a variety of professional backgrounds who practice in multiple regions of the USA or in other nations and in different kinds of care-settings. In addition, their professional perspectives have been supplemented by an organization leader who also has been totally ventilator-assisted for the majority of her productive adult life. ( The contributors were: ( Augusta Alba, MD Physiatrist/Neurologist. Authority on long-tenn respiratory care in the pioneering Howard A. Rusk Respiratory Center, Goldwater Memorial Hospital, New York. New York. Robert John Byrick, MD Critical Care Physician/Anesthesiologist. Authority on medical outcomes in an acute ICU, St. Michael's Hospi tal, Toronto, Ontario, Canada. Donna Frownfelter, RRT, PT Editor, Chest Ph~sical Therapl and Pulmonary Rehabilitation. Board Member. hicago Lung ssocia tion; Co-chairperson, Chicago Lung Association VentilatorDependent Adult Project. Director, Chest Physical Therapy, Rush-St. Luke's-Presbyterian Medical Center, Chicago, IL. Assisting Ms. Frownfelter were: Ellen Elpern, MSN, RN Critical Care Nurse, Rush-St. Luke's Presbyterian Medical Center, Chicago, IL. Shari Pomerance, BA, RRT Respiratory Therapist with special interest in ventilator-assisted individuals, Rush-St. Luke's-Presbyterian Medical Center, Chicago, IL. John Kirkwood, MBA -Executive Director, Chicago Lung Association. Ann Koterla, MBA Consultant, Chicago Lung Association.

PAGE 248

'... ( ( OTA Task 5 Contract 533-4935.0 Rita M. Giovannoni, RRT Respiratory Therapist with special interest in ventilator-assisted individuals. Pulmonary Rehabilitation Service, University of Wisconsin, Madison, WI. Member, American College of Chest Physicians Ad Hoc C011111ittee to Develop Guidelines for Ventilator Care in the Home and at Alternate Connunfty Sftes (ACCP Ad Hoc Conni ttee). Assisting Ms. Giovannoni was: James Skatrud, MD Chief, Pulmonary Medicine, University of Wisconsin, WI. Frank Indihar, MD-Practicing Internist/Pulmonologist. Innovator of long-tenn respiratory care-center at a large metropolitan medical center -Bethesda Lutheran Hospital, St. Paul, MN. Barry Make, MD -Pulmonologist. Director of Respiratory Care Center, University Hospital,Boston, MA. Fonner Medical Director, Medical ICU, Boston City Hospital. An authority on home ventilator care for adults. Member, ACCP Ad Hoc Connittee. Walter O'Donohue, MD -Pulmonologist. Chairman, Department of Internal Medicine, Creighton University School of Medicine, Omaha, NE. Chairman, ACCP Ad Hoc Conmittee. Margaret Pfro11111er -Research Associate/Consumer Advocate, Rehabilitation Engineering Program, Northwestern University School of Medicine, Chi cage, IL. Alan L. Plunner, MD -Pulmonologist. The Emory Clinic, Atlanta, GA. Member, ACCP Ad Hoc C011111ittee. President-Elect, National Association of Medical Directors of Respiratory Care. William Prentice, RN, BSN -A nurse with special interest in respiratory rehabilitation. Liaison Nurse, Pulmonary Service, Rancho Los Amigos Medical Center, Downey, CA. Member, ACCP Ad Hoc Committee. Geoffrey T. Spencer, OBE, MB, BS, FFARCS. Medical Consultant, Phipps Respiratory Unit, St. Thomas Hospital, London, England. Medical Consultant, Responaut Program.

PAGE 249

: \ OTA Task 5 Contract 533-4935.0 INTRODUCTION Case Scenario LIFE SUSTAINING TECHNOLOGIES AND THE ELDERY PROLONGED MECHANICAL VENTILATION TASK 5. FACTORS INFLUENCING TREATMENT DECICIONS C.M., 1n her late sfxties,retired after a long and successful career as a teacher. Shortly thereafter, she suffered 10/15/85 -300044G a severe respiratory infection, which caused her to be hospi talized and ventilated full-time through a tracheostomy. Although she had a ~hronic disability prior to.~his acute illness, she was fully ambulatory, independent, and active. C.M.'s insurance policy paid a fixed rate per day, and her private financial resources were soon almost exhausted. After a period of time, it was no longer to the advantage of the acute medical facility to keep her. Her doctor and rehabilitation therapist wanted, despite her age, to find more for her than the long-tenn nursing facility which accepted (but did not have a good reputation in caring for) ventilator-dependent people. It was hoped that weaning her from the ventilator would be to her advantage; she would be able to go to a more preferable care setting. C.M., however, was frightened at the prospect of being weaned. There was no respiratory care program being planned for her which would include mechanical assistance: e.g. oral positive pressure. There was some consideration being given to her living in her own apartment with attendants or nursing aides, combined with technical equipment, such as an enviromental control system and wheelchair. Neither the decision to intervene with a tracheostomy and ventilator as part of her original treatment, nor the decision to wean her from the ventilator, nor the decision as to what kind of life-style she would have after leaving the acute-care facility, was made by C.M. herself. She did not seem capable of making a knowledgeable decision, and she was frightened at the prospect of being without the technology that was sustaining her. In addition, the caregivers (doctors, nurses, therapists, social workers)

PAGE 250

OTA Task 5 Contract 533-4935.0 were not knowledgeable themselves about the practical aspects concerning lifestyles which were feasible for her situation in her her connunity. The care-givers openly ntvealed their lack of consensus by conver sation and arguments in her presence. This did not contribute to her confidence that she could survive for long outside her present innediate setting. The care givers did not recognize that her consequent indecisiveness was a logical result of their own. They misread her fears and evaluated her as incapable of making appropriate decisions in behalf of her own interests. A peer-counselor would have provided many answers for both C.M. and the caregivers, presenting them with options and alternatives based on real-life experience. However, no such option wasconsidered. Community based alternatives do exist for persons like C.M. But they only exist because of the recognition on the part of a few individuals of the issues and their relentless pursuit of legislative change. Such options include independent living services-attendant care, technical equipment, and congregate, accessible housing. The fact that Medicare or private insurance companies do not have services conveniently packaged and readily available, and that they probably do not readily pay for -these alternatives, also affected the decision-making options for this elderly person. Case Scenario A.V., a masters-level nurse in her mid '70's, has had a professional career in health care involving decades of teaching science at high school, nursing school, and at the college l~vel. Soon after attending a patient with dreaded spinal meningitis, she had a sudden cardiovascular .collapse and cardiopulmonary arrest. She was resusi tated by her sister, intubated in the local emergency room, and odmitted to a regional ICU for acute respira tory failure which required tracheostomy and prolonged mechanical ventilation (over 3 months). In addition to her pulmonary problem, severe hypoxia (oxygen lack) had resulted in abnonnal h~art, kidney, and spinal cord function. She made no urine for over 2 months, requiring meticulous attention to her input, output, and weight, as she received daily peritoneal dialysis. She could not move anything but her eyelids, and a world-famous neur ologist claimed she never would move aga_in. After 2 1/2 months of intensive care, a decision had to be made. The coordinating physician (a resident) invited 6 atterading specialist consultants who discussed her prognosis and gave their opinion (50-50). The resident, lO/lSfO O 4 4 7 4 -

PAGE 251

( ( OTA Task 5 Contract 533-4935.0 knowing that further treatment was futile with no urine output, discussed a renal biopsy with the patient who was alert, awake, and infonned of the high risk (at this time, A.V. had an increased bleeding tendency). After a discussion (eyelids do pennit conmunication), the decision to do the biopsy led to favorable diagnosis with a prognosis favoring recovery. Soon, movement of the extremities began, and with rehabilitation, A.V. is walking and working today. She continues her volun t~er work which, in the recent past, focused on socially disturbed children. She currently is working with the elderly. A.V. has given her pennission to the OTA to share her feelings about the above experience {Appendix). 10/15/85 -5 00C448 Throughout the history of medicine, a basic tenet has been to provide the best possible fo.r the patient The definition of "best care" was reached by the physician and patient, acting together, searching for the answer to the patient's problems. Decisions were based on moral and ethical principles dear to the physician and patient alike. In more modern times, decision-making has been clouded by an economic issue. This has been due in part to the recent onset of a budgetary governmental philosophy that arbitrarily allocates a 10% limit of the gross national product to health and welfare issues. Despite the lip service paid to "quality of care being left to the physicians and hospitals" (Senator David Durenberger, R-Minn; Chairman, Senate Health Co,nnittee; Author, ~RG Medicare Reimbursement System), it is apparent that economics is and will play an unfortunate role in determining the decisions about future care provided to our elderly citizens.

PAGE 252

I \ OTA Task 5 Contract 533-4935.0 Who, then is the real decision-maker regarding the patient's care: 1011s1l1Jio O 4 4 9 -6 -the patient; the physician; the health care system, or the government, which limits payment for services? It is becoming more and more apparent that if cost is the prime mover in making medical decisions, it is the body that regulates financial resources that must bear the prime responsibility for medical decision-making. It is this concept which many people find unconscionable and unethical. It is apparent that if proposed legislation rations health care dollars and services, elderly patients with chronic and expensive illnesses will be closely scrutinized for the cost-effectiveness, rather than the cost-benefits, of their care. 1) In practice, who makes the decision? The decision to institute prolonged mechanical ventilation is often made on an emergent basis; patients are usually intubated and begun on mechanical ventilation as an acute, life-saving measure. Chronic underlying conditions (diseases, disabilities) may exist, particularly in elderly individuals. In a few such persons, it is later recognized that they cannot be completely weaned from ventilator support. A new set of decisions must then be made, either to withdraw ventilator support, or to continue ventilation, in a more prolonged fashion, as a life-supporting technique. In the acute care setting, when a patient is in acute respiratory failure, Make believes that it is always a physician's decision to use mechanical ventilation. The initial physician specialist varies who will decide upon the acute institution of mechanical ventilation in the emergency situation. For post-operative surgical patients, a surgeon or anesthesiologist will make the decision. Alternatively, physicians staffing emergency rooms and

PAGE 253

( OTA Task 5 Contract 533-4935.0 10/15/85 0 0 045'~ -7 -intensive care units are most commonly called. When the decision is elective, the primary care physician generally consults colleagues from pulmonary medicine, anesthesia, and/or intensive care. The initial de cision can result in a subsequent situation where long~tenn ventilation is required. It is lass clear who the decision-makers are at this point. In the chronic care setting, where a disease is progressing and respiratory failure is probable, the physician and the patient are the key decisionmakers, with input from the patient's inmediate family, generally the spouse or children. Final decisions for treatment must always b~ made, in Plunmer's and O'Donohue's opinions, by the attending physician who is ultimately respon~ible for all decisions affecting the patient's care. If house staff make the decision, it must be reviewed by the attending physician and agreed upon before action is taken. According to Frownfelter et al, decisions should be made in consultation with the patient, family, and other health care providers. In practice, there is usually a varying amount of input from the "team" members: nursing, respiratory therapy, physical therapy, social service, etc. At Rancho los Amigos, Prentice states that patients must be "coded" unless they request not to be. The staff tries to ascertain if the patient understands the expected outcomes in order to make an infonned choice. However, the decision is made by the patient. At Goldwater, Alba relates that the decision is made by a rehabilitation team, including a nurse, pulmonary technician, respiratory therapist, chest physical therapist,

PAGE 254

( OTA Task 5 Contract 533-4935.0 1011s1aso o 04S 1 -8 -resident physician, and attending physiatrist, trained in pulmonary rehabilitation. The decision is made. in practice. by the staff physiatrist, the r.esident, and the patient, with input from other members of the team. In. Canada, major factors influencing treatment decisions in severely ill patients have been concisely reviewed by the Canadian Law Refonn Commission (Report 20. Euthanasia, Aiding Suicide and Cessation of Treatment. Law Reform Conmission of Canada, Ottawa, Nov., 1983). In practice, competent patients can refuse ventilatory care, even if refusal will inevitably lead to death. The physician's obligation is to infonn such a patient fully of all options and consequences. These patients can not be treated against their will, and the role of the family in decision-making is minimal. Treatment of incompetent persons with initiation of ventilation, weaning, and \ withdrawal of care in Canada is more problematic. A decision in favor of life is always undertaken if treatment is considered "reasonable and useful 11 This places the burden on those who would stop treatment, or not initiate life-support therapies, to justify a decision which would result in death. The family is always involved as "surrogate decision-makers" for the patient. Byrick always emphasizes that he wants the family to decide what the patient would have wanted under these circumstances, not what they would want. This substituted consent must also consider quality of life issues.

PAGE 255

' \. OTA Task 5 Contract 533-4935.0 10/15/85 0 0 ij 4 g -2) In practice, what patient characteristics weigh most heavily in decisions regarding initiation of treatment, weaning, and withdrawal? Currently, in a dire, life-threatening situation, and without any knowledge of the patient's wishes, all available technology is applied. Elderly patients, in the emergency setting, are given full life-sustaining technological assistance to preserve life (Indihar). However, if time permits, and information cari be properly obtained and assessed, there are specific patient characteristics which are considered in the decision-making process. According to Byrick, the patient characteristics most influential are: competence to give truly fnfonned consent, severity and reversibility of -. primary disease process, prognostic estimates (see OTA Task 4, Byrick's previous discussion of prognostic uncertainty), response to treatment, and chronic health status (quality of expected life). Alba states that the decision to treat vigorously is strongly influenced by patient s desire to live. Make believes that the characteristics which weigh most heavily in decisions regarding mechanical ventilation can be categorized into 1) medical progno sis, 2) patient and family wishes, and 3) psychosocial factors. Specifically considered are the prognosis of the underlying disease which requires the institution of ventilation, presence of other underlying or chronic dis eases which may/may not complicate use of mechanical ventilation, medical assessment as to whether mechanical ventilation might be able to be successfully withdrawn at some future date, prognosis of the patient with or

PAGE 256

( OTA Task 5 Contract 533-4935.0 1011stflio 045J -10 -without the use of mechanical ventilation, nutritional status, psychological stability, ment~l status, and quality of life of the patient prior to the institution of mechanical ventilation. Plunaer states that the characteristics which weigh heavily in decisions regarding initiation of mechanical ventilation are: overall health of the patient, the number of organ systems involved, the reversibility of the lung disease causing respiratory failure, mental compete~cy of the patient, and the likelihood of a favorable outcome. Unusually, a patient is placed on a mechanical ventilator with a goal of home mechanical ventilation. Patient characteristics which weigh heavily in decisions regarding weaning include: respiratory muscle strength, the ability to take a deep breath and cough, mental clarity, the reversibility of the pulmonary disea$e, and the stability of associated medical problems of other organ systems. The same factors are involved with withdrawal from mechanical ventilation and extubation; they include specific criteria for the minimal vital capacity (15cc per kg ideal body weight), inspiratory force (+40cm of water), and acceptable arterial blood gases off mechanical ventilation. According to Frownfelter et al, Giovannoni et al, O'Donohue, and Prentice, the patient characteristics that weigh most heavily in decisions regarding initiation of treatment are the: primary and secondary diagnosis, nature and severity of the respiratory illness, long tenn condition, presence or absence of treatable disease, irreversible component of the disease (i.e. tenninal carcinoma), prognosis of underlying disease process, special circumstance (patient just out of surgery needing short term support of

PAGE 257

' (, OTA Task 5 Contract 533-4935.0 10/15/85 000454 -11 -ventilation), functional and mental status, age (younger patients seem to be more aggressively treated), financial status (insurance, independent funds). patient and family wishes and choice (although not always asked), patient compliance with health care, and quality of life. Weaning decisions are mainly based on patient improvement and mechanical ability to maintain a more normal pulmonary function without ventilator assistance (medical stability). Prognosis of the patient will also be considered before weaning is initiated. Weaning is_predicated on the measurement of weaning parameters (pulmonary function tests, arterial blood gases) which are_used to guide withdrawal of mechanical ventilatory support, and, ultimately, on clinical trials, which determine whether or not mechanical ventilation can be safety withdrawn. The process of weaning may take weeks, and at times months, before a final decision can be made. The final decision is a medical judgement. Withdrawal from the ventilator is considered when the patient har demonstrated over an extended period of time both strength (i.e. stable pulmonary function and arterial blood gases) and endurance (i.e. most of the day), perhaps only sleeping with ventilator-assistance. There should be the potential seen that the patient can regain adequate function in his/her activities of daily living. In these situations, prognosis is-very important, and patient choice is considered. Withdrawal ~f ventilator support may also o~cur in patients who are brain dead or who have no potential for useful existence with ventilatory support.

PAGE 258

( OTA Task 5 Contract 533-4935.0 10/15/85 roo45:, -12 -3) In practice, what factors influence decisions regarding transfer of patients from one setting to another? (e.g. nursing home to hospital, hospital to home) Elderly patients that are medically stable do not need -to be in a hospital ICU. A transfer to home or a less costly and more appropriate communitybased option is desirable. If, how, and when such a transfer is possible depends upon a number of considerations. Some factors which influence decisions for the transfer of patients from one setting to another ar~: availability of options; admission criteria; patient acceptance by the facility (long wafting lists); distance from family home and family preference; and the availability of private, public, or personal funds to pay for the alternative setting. Other factors include: physiologic stability of the patient, extent of need for medical input, number of hours of nursing care required; quality of medical care, including nursing and respiratory therapy; patient independence by self-care; prognosis; and quality of life. Thus, the medical status, level of care required, suitability of the environment, and financial factors are the major issues that influence such transfers. Being home with family members is always the ideal choice. Factors which influence a decision to send the patient home from the hospital include: successful treatment of the acute illness, control of diseases present in other organ systems, possibility of care in the home, and availability of c0n111unfty-based medical services. Transfer of patients from hospital to home usually occurs after ft has been determined that the patient's condition

PAGE 259

.I OTA Task 5 10/15/~ 0 0 4 5 6 -13 -Contract 533-4935.0 is clinically stable to the point that the patient can be managed outside of the hospital. This requires a team assessment and decision involvin~ the patient, family, physician, and other health care providers.* Resources for care outside of the hospital must also be available, adequately evaluated, and assured of reimbursement prior to discharge. Nursing homes are often the choice w~en the elderly cannot be discharged home. Furthennore, when patients are at home, they may be transferred to a nursing home when the physical and/or emotional -strain of caring for them 24 hours per day becomes to great for the family to bear (respite care vs. permanent placement). Factors influencing the transfer of patient from the hospf tal to the nursing home include: inabf lity of the patient to receive adequate care at home, due to the lack of family members present, or inadequate home health services; the intensity of care involved, due to the severity of the. patient's illnesses; the amount of rehabilitation necessary before the patient can be cared for at home; and the financial situation. The nursing home is not able to provide adequate care when the patient is medically unstable. Factors which influence the transfer from a nursing home to a hospital are: superimposition of an acute illness which is unable to be treated in the nursing facility and the deterioration of the Editorial C011111ent: It is my experience that hospital discharge requires a specially-designated core group who understand this process and who can aid their colleagues, the patient, and the family (Goldberg).

PAGE 260

' OTA Task 5 10/15/89 0 0 4 5 7 -14 -Contract 533-4935.0 overall health of the patient to the degree that a higher level of care is detennined necessary for proper management. Ventilator-assisted individuals are transferred from a nursing home to a hospital when they are in need of more skilled care or procedures. However, with the new DRG's, the patient in the hospital is transferred back to the nursing home as soon as they are relatively stable. Often this is too soon,as noted by the quick return back to hospital. Byrick believes that a major factor influencing decisions to transfer patients from one therapeutic setting to another is the availability of resources. The availability of ventilatory facilities outside acute care settings might alter criteria used to initiate such treatment. Open-ended, government-subsidized funding of such facilities, in poorly organ.ized nursing home centres for the elderly, would increase inappropriate utilization and must be avoided.* 4) In practice, what role does age play in these decisions? Is this appropriate? At the present time, age is not the major limitation on uti~ization of ventilator care, but rather ICU resource availability often limits its use, forcing appropriate consideration before treatment (Byrick). It must be emphasized that age is an extremely important factor in decisions to Editorial Conment: It is my opinion that the development of such options must be under the guidance of experts who understand these realities: professionals, consumers, and leaders from organizations that would be impacted (Goldberg).

PAGE 261

(_ OTA Task 5 10/15/85 Contract 533-4935.0 15 0 0 045S institute care as the elderly more frequently have irreversible disease processes and, often, limited chronic health potential (e.g. demen~ia). Byrick's experience suggests that many elderly survivors did benefit from ventilatory care during acute illnesses; however he suspects very few would be well served by a chronic ventilatory lifestyle (See OTA Task 4}. Make believes that age per se does not play a role in these decisions. Most physicians now recognise that chronologic age alone is not as important as the physiologic age of the patient. Two patients of the same age may have markedly different characteristics. One patient who is 70 years old may be holding down a full-time job, while another patient the same age may be malnourished, withdrawn, and home-bound with severe cardiovascular disease. Nevertheless, the tendency is to recognize that the elderly may not tolerate major invasive therapies as well as younger individuals. Additionally, older people have a reduced life-expectancy because of their age alone. Make believes it is appropriate to consider these realities. O'Donohue also believes that age alone is usually not a major determinant for the initiation or for the continuation of mechanical ventilation, in or outside of the hospital. More important than age is the disease process itself and the potential benefits to be gained by either short-tenn or longterm mechanical ventilation. Prentice notes that age plays no role in decisions at his institution; however, priority is given to referrals for admission from younger patients. Plunmer states that advanced age usually prolongs the care in the hospital and makes for more complex care at home, because of the co-existence of diseases in a number of different organ

PAGE 262

',, : '. r. ( OTA Task 5 10/15/85 Contract 533-4935.0 -16 -0 0 0 4 5 !} systems. Senility, if present, adds to the complexity of care and influences placement. Age per se usually does not affect placement decisions. Alba agrees that chronolog1c age per se is not a factor. Others disagree and believe that age is a strong factor in decision-making. This is inappropriate since the individual patient's condition and prognosis should be the important factors. Age alone should never be the sole factor for any.decision. There are young people who should not, in their opinion, be ventilated. Each person and situation should be evaluated o~ its own merit. Age should play a role in these decisions only to the extent that age impacts on the medical prognosis. They consider age as one, but not the only, factor in the decision. 5) What characteristics of elderly patients may receive inappropriate attention? No characteristics of elderly patients receive inappropriate attention (PluR111er). Others do not agree. O'Donohue states that being elderly may itself result in the patient receiving inappropriate attention. Elderly people may not have visible relatives who are concerned about their welfare; the elderly often may not have a patient advocate. Resources for acute and prolonged care may not be readily available. Giovannoni et al list three characteristics of elderly patients that may result in inappropriate attention by decision-makers when employing long-term mechanical ventilation: age, family support, and financial status. Frownfelter et al believe that the characteristics of the elderly that may receive inappropriate attention are often behaviors that may be thought of as

PAGE 263

OTA Task 5 Contract 533-4935.0 lO/lS/ffSO 046 0 -17 -typical of the elderly; issues such as sleep disorders, poor eyesight, and poor hearing are glossed over and often disregarded. In a younger popula tion, these problems might be recognized as the cause of dysfunction, but they are often chalked up to "old age" in an elderly populat;on. Alba de scribes the negative pat-ient who is always finding fault, and the anxious patient; these qualities create inappropriate attention. According to Make, other characteristics of elderly patients which may receive inappropriate attention include the: recognition of other critical disorders; know-ledge about the patient s prior life style; evaluation of disa.bi 1 ities related to age; assessment of the health of pa~ient's spouse and family; and awareness of the interaction of family members, including children and parents. Byrick believes that it is inappropriate for physicians to ignore the elderly patient's expressed desires concerning initiation or cessation of ventilation. These issues should be discussed with such patients before policy options are developed and certainly before prolonged therapy is undertaken. Such paternalistic decision-making may be more comon with t~e elderly when the physician assumes these individuals do not, or cannot, understand the therapeutic options available. It is also inappropriate for physicians to focus on one reversible aspect of a patient's disease (e.g. pneumonia) while ignoring unrelenting irreversible processes (e.g. cancer, dementia). Therefore, chronic health status and quality of life decisions are not only valid but essential in dealing with the elderly. \

PAGE 264

OTA Task 5 Contract 533-4935.0 10/15/~ 0 0 4 61 -18 -6) How are changes in the patient's condition evaluated, and how do these enter into treatment? O'Donohue .notes that changes in the patient's condition may be evaluated by any member of the health care team and may enter into the decision for either higher or lower levels of care. A patient may ~t times be transferred to a high level of care based primarily on observations by the nurse or respira tory therapist with agreement by the responsible physician. Transfer to a lower level of care usually takes more of a team approach in assessing all of the needs of the patient in regard to long-term ventilatory support. According to Plummer, all changes in patients' conditions are evaluated by a physician. Appropriate treatment decisions are instituted based upon the history, physical evaluation, and the supporting laboratory data. In Byrick's experience, changes in the patient's ventilatory condition are evaluated by physical examination and physiological monitoring using such techniques as chest x-rays, serial arterial blood gas evaluations, and lung compliance {stiffness measured using airway pressure generated hy the mechanical ventilator). Changes will reflect disease reversibility and response to therapy. In the acute care setting, such factors are important detenninants of weaning capability. If improvement does not occur with optimal therapy over a variable time period, withdrawal of ventilation is considered. Frownfelter et al states that changes in patient condition are evaluated by subjective means, such as clinical observation, and objective means, such as pulmonary function or blood gases assessment. Treatment decisions are

PAGE 265

OTA Task 5 Contract 533-4935.0 1011s1,r O O 4 6 -19 -based on these evaluations, which should be performed regular.ly. Changes in the patient's condition could profoundly affect decisions. If the patient has a change in medical condition, placement may have to be different, level .of skilledcare may be increased, and even a decision to withdraw support may be made by the patient, family, and/or physician. At Goldwater, patients are evaluated by an interdisciplinary respiratory re habilitation team well-skilled and experienced in pulmonary rehabilitation. This team includes a physiatrist, pulmonary technician, respiratory therapist, chest physical therapist, and assigned resident. In addition, a pul monologist is involved in cases of intrinsic lung disorders. For discharge planning, special staff members including social work, public health nurse, ( and utilization review are added. (7) Are decision-makers sufficiently knowledgeable about the elderly and about ventilation? Are they sufficientlyopen to the various treatment options? In general, health care professionals who deal with the chronically-ill are open-minded and supportive to patients regardless of their decision on the use of life-saving equipment. Indihar states that it is a co11111on misconception that physicians force the use of these devices. To the contrary, it has been Indihar's experience that physicians try to educate the chronically-ill patient who might require the life-saving machinery about their disease, prognosis, and likelihood of weaning. This is done in a non-judgemental fashion. The patient is supported in his/her decision, despite the subtle pressures from current legislative trends to deny and ration the health care dollar from patients who are chronically-ill and expensive.

PAGE 266

OTA Task 5 Contract 533-4935.0 10/15(,88 0463 -20 -Make thinks that decision-makers may not be sufficiently knowledgeble about both elderly individuals and the use of prolonged mechanical ventilation. The techniques and the management of patients receiving prolonged mechanical ventilation at home and alternate co11111unity sites is relatively new, particularly in elderly populations. In addition, the aging population has raised questions concerning many aspects of age so far unexplored; relatively little scientific information is available. On the other hand, Prentice states that decision-makers are sufficiently knowledgeable, and when specific questions arise, consultation is available from experts in geriatrics. In Plunmer's institutfoh, decision-makers have sufficient knowledge concerning the elderly. Usually consultation is requested concerning the patient's ability to maintain spontaneous ventilation, and the physicians requesting the consultation are quite open to the various treatment options available. At Goldwater, Alba states that professionals are open-minde~ as far as the law permits. Giovannoni et al states that knowledgeable decision-making depends upon the background and expertise of the individual health care practitioners and the hospital's past experience with the patient population. O'Donohue believes that the knowledge and skills of decisionmakers varies from institution to institution and region to region. An ul timate goal would be to establish regional centers in which such expertise can exist and to establish adequate and appropriate guidelines for the care of such individuals. These related experiences differ from that those of Frownfelter et al who believe that decision-makers in many situations may in incapable of effec-

PAGE 267

( OTA Task 5 10/15/85 Contract 533-4935.0 21 _o o o 4 6 4 tive judgements. Most medical centers and teaching hospitals have specially trained pulmonary care experts. However, residents may be handling the patients. In smaller conmunity hospitals, it may be the generalist or nonpulmonary physician making the decision. Most generalists and even some pulmonary specialists are not aware of home care options for the ventilator assisted individual. They are often not open to trying "new methods" or options. Byrick feels that physicians are sufficiently knowledgeable about the physiological limitations of the elderly. He believes that prognostic uncertainty is the major issue prompting the use of ventilation in_ circumstances where therapy is ultimately useless. Legal implications of withdrawing such care then become important for the physician decision-maker. Although the physician may be "open to the various treatment options" in these circumstances,,widespread availability of home ventilation programs may prompt physicians to delay appropriate decision-making, with costly and uncomfortable results for the patient and family.* 8) What is the impact of institutional norms and guidelines re: mechanical ventilation, including "do not intubate" orders and their interpretation? In Indihar's experience, all hospitals have a mission statement that places first the care of the patient. In no instance has he felt any institutional Editorial C011111ent: I share this concern. A system must be put in place to determine medical necessity and appropriate needs of the prescription and to assure the quality of its administration (Goldberg).

PAGE 268

OTA Task 5 10/15/85 Contract 533-4935.0 220-0 0465 pressure regarding medical decisions. However, with the advent of profit-motivated medicine, the cost factor for the care of these chronically-ill patients will play a major role in the decision-making process. O'Donohue believes that the question cannot be answered for all institutions. "Do not intubate" orders should be reviewed as part of the quality assurance process for every individual institution. Overall, this order should be reserved for those persons with hopeless disease for whom there is no chance of benefit by initiating mechanical ventflatione The concern is that these orders not be used to deny acute and possibly long-term benefit to pa-tients simply because they have severe disease or because they are elderly. Byrick states that the institutional availability of resources are very important in utilization patterns. The use of "do not intubate" orders and hospital guidelines (re: mechanical ventilation) vary widely. Ethics committees facilitate discussion and awareness of such issues as "withdrawal of care" and consent to treatment. Different situations are described by contributors to this question. Frownfelter et al remark that institutional norms and guidelines determine where patients are placed in the institution (i.e. ICU vs floor), whether automatic consults go to a pulmonary specialist, and whether patient wishes or "do not intubate" orders are observed. In contrast, Plu11111er states that there are no institutional guidelines regarding who should or should not receive mechanical ventilation. Generally end-stage cancer patients and those with end-stage lung disease do not receive mechanical ventilation.

PAGE 269

OTA Task 5 Contract 533-4935.0 10/15(P8 0 4 6 6 -23 -"Do not intubate" orders are arrived at by physicians after thorough discussion with the family, and, if possible, the patient. The overall impact is that patients who should not receive mechanical ventilation do not, cost savings are realized, and excessive mental anguish avoided on the part of the patient and family. Make does not believe that institutional guidelines concerning the use of mechani ca 1 ventilations genera l_ly impact upon the e 1 derly. On the other hand, more institutions are developing committees to assist in the decision concerning 1 i fe-supporting techniques. Interpretations of a "do not intubate" are clear. Gfovannoni et al state that "do not intubate" order is useful in providing clear direction for staff in terms of a decision-making process completed prior to and in anticipation of an acute event. They serve as established guidelines for this aspect of medical practice. These kinds of orders are by consent of the patient and family and must be frequently reevaluated. At Goldwater, there are norms created by a Professional Practice Committee and Bioethical Cofflllittee of the M~1ical Board. The physician staff there work within the framework of nonns and guidelines, and try to affect change in them when needed. (9) How and to what extent do religious beliefs and cultural values influence treatment decisions? Byrick thinks that religious beliefs and cultural lifestyle expectations can influence individual decision-makers. Respect for the value of life and individual autonomy varies widely when quality of life measures are con sidered. Frownfelter et al agree that religious beliefs of both the

PAGE 270

OTA Task 5 Contract 533-4935.0 physician and the patient play a role. a bigger role in the decision-making. The physician's belief probably plays Patients usually are not asked their religious belief re: ventilator assistance or death. They are usually not cared for by their family physician when in a hospital when on a ventilator. Often the initiation of ventilation is for a medical condition that requires a quick decision on the part of the physician, and time is not spent discussing the patient's religious beliefs. Make states that religious and cultural beliefs influence treatment decisions, not only by influencing the patient's reaction to mechanical ventilation, but also the reactions of physicians and ancillary medical personnel. Most often, patient's religious beliefs lead them not to accept prolonged mechanical ventiation. They interpretate this as an unnatural form of existence and the tampering of faith as detennined by God. Cultural and societal values are also important to patients. Individuals from sophisticated urban centers with sophisticated technological backgrounds are more likely to accept the use of machines to alter their lives. lndihar has found that most hospital chaplains of all religions tend to be supportive of the patient's decision, regardless if the patient chooses to be ventilated or not. The use of ventilatory support is considered by the majority of religious leaders to be "extraordinary" support; most chaplains/religions do not push the use of these devices to prolong life. The issue of withdrawal of a ventilator, however, is totally different and

PAGE 271

( OTA Task 5 10/15/85 Contract 533-4935.0 250_00468 much more complex. In most instances, when a p~tient wishes to have a ventilator withdrawn, the religious and cultural norms consider this to be $Ufcidal behavior, which is currently not acceptable in our society. In contrasting opinions, PlUR111er states that religious beliefs and cultural values have little influence on treatment decisions. At Rancho, since the decision is that of the patient, the patient's religion has no bearing on the staff. Prentice is unable to see any trends as far as religion regarding the patient's decision. O'Donohue claims that religious and cultural values affect a minority of patients, but can, in individual instances, prevent patients from getting the maximum treatment benefits that are available under the current health care system. If the religious beliefs are those of the patient, the patient is unwilling for treatment to be rer.aered, and the patient is mentally responsible, then such treatment is almost impossible to initiate and to continue. If, on the other hand, the religious and cultural beliefs are not those of the patient, there must be a mechanism to allow the patient's wishes and beliefs to prevail. Alba states that the desire to live or not cuts across religious beliefs and cultural values. The patient's own investment in life is of far greater importance -whether he can visualize himself as having a meaningful existence in these circumstances.

PAGE 272

( The Patient Perspective SISTERS of ST. FRANCIS 1200 LARKIN AVE. JOLIET, ILLINOIS 60435 OCT. 1, 1985 M1 BM~ aeete~ ALL'ill OOLDP.ERG, Si~-HOH MERVOlTS I AN TO NOT PLA.CE T~ CA '?IT')L Ill TYPEtntIT~R. 000469 I HA "-T.'. E3~N TRF ~ISF~IIBD TO JOLIET FOR 0O1D. THif: IB THE REASON I HA VE 'NOT ANSH~F.lID YOUR L:::TrER. I AH IH COHV'lNT n~ JOLIST I.EXT TO THE AC/, l"Sl'iY T~LEPHON~ 815-74M~ 4106 or 7 -address above. please forgive ne tor error again. ) !OR ?AST YEAR I HAV:, NOT USED Tl!Z ~~?IRA.TOR, BUT I HILL HELP WITH INFOREATION.. ) THANK YOU FOR nsnm ?ROLOHGED zc:IANICAL HE~'PIRATION. THAHK YOU FCR tmT PULLING THE PLUG OM 1-~ TO ~1m IT ,,LL THANK YOU FOR STAJIDING P.Y TlffilJ' ~PD-I.AL MNINGITIS TO THI~ DAY I A!! ALIV~ F~CAUS~ ~-!ITH DIALl~IS YOU l~~T lZ P.ECOWRitlG AFT~ FIV:~ CARDIAC ARRESTR. NOW I ,-1ALK "r!TH SIX FE1~, 2 NAT~'RAL Ai-TD WALIG::R HITH FOUR. raIBF~ATCD 74 ":EAR~ SE~T. 16 ..im TH!-.NK GOD A.ND YOtT I A}:, Vr~RY nmsP:-~nDEHT. I ~LA~ FOOD ON CA.RT AUD SHI!iT IT TO PLACE op ~~ATIUG. UA~H l:Y DISI!ES iTC. TN 1970 (DEC. 2l)wh4n i contracted spinal meningitis, i never drea1ned that i 1Y'llll) r-AKE GOLT>~H JUBILEE. THI~ DID HAPPE?I JETtE IH JOI-IET HHEN I F}.jj1-J Dl FRO!-: cr.:;VEIAlm OHIO. OUR COH:UNITY ?AID rouc OF NY CA~. Ar'Tlm l"OUR I-:Ot!THS AT l".ETRO r;~U~RAL IN CUVEIAND OHIO I S~~T TPO YEARS IU RECOV~~RY CARE IN COUVO::H.T D!FI:t::ARY. ms, THE;RE 1J.S POOT P.ROP, V~OETABLS ~TATi ~: AL.. THIS nII~ THEH Sl'BDElll.Y MAD~ G~AT n-:Ri>Rr,V~~Bl!TS TllllU' 'l'Hl~RA?Y IN CONV~UT DIFI1U'ARY CI\HE. Tt:C::: I WAS HOSPITALI~D o~:cg ST. AIZXIS HOSPITAL A?ID Oi'iC.~ AT HOt:; WITH IUAFILITY TO REl.OV.~ P~Gn~o TH~ R.~~~I:'.ATORY CHODEDYL, TAPPDIG OR CLAP~Itm Tf1EATl!~HT 0ItoVill Ht;H~FICIAL. I:! D~ S'!STER J!ARit: HBL!SD l'E THEtJ THS~ TF.EATI E!JT AL~O. MOH I tw.rILY iXPi:,CTORATb:.

PAGE 273

UHIV'll5E BULLETIN OF C LEVF.LA~!D p 3l. Jmi'E: 7, 1985 IY DEA :l DR. GOLDbER.., IS .l. VI_!ll'UE .l..]D YOU .. DID JUST T~HT 'FIFTH TH!ISE lT.A~ OF:-: LIVING >.S A !HIN IS !IERE. I CAIf'T BELIVE IT. >.1,m YOU ALSO !ADE ._,.: Sr. Ann .. Sr. Co~siline .. -~ Sr. Agnes IT POSSIBLE WIT:'>.~-. .. .... : .... .. .... .-.. .. n~ CH A'ii) c~:1CETtt:Joliet Franciscan Sisters ,I l .,rm YOU DID !lar Pl~ '''WiJ{ObServe anniversaries .. THE PLUG. TJF.V ~R DID,. Two former members o( Sl Procop Sister Agnes now lives at the Vincens Pariah will be amon1 36 Sisters uf SL tian Sisters of Charity Convent in Bed. I DREA?-! THIS DAY WAi Francia of Mary lmmaculate who will ford. She is a volunteer at the-Oak Park celebrate jubilees Saturday, June 22, in Health Facility, and involved in Legion.. i---Sl Raymond Cathedral; Joliet, m. They' of Mary promotion. and in proce:;sing ,. :are 1olden. jubilariana Sister Consilin~ stamps to benefit South American :: i_.r_.a_T I_ S IT I SHOULD! --~~ndrarak ~a~.~-_s_ -i~~e._ r ._A1nH (:Lud~ilh1.) mission:t. ,-rw. 11 Y"' Earlie:-she engaged in parish ministry : t ,.rRITE? YOC HAVE A I'. Among the diamond jubilarians wm at Our Lady of Mt. Carmel, Wickliffe,. n 1 .. be Sister Ann. Bartos, who tau.iht here and in volunteer work for the Wickliffe .. Country Place Nursin& Home. Copy OF .". ILT'~~S formany years, both at St. Procop and .. He: professional car~t:r in health care .-, .r:.1. .., Holy.Family parishes.~ involved dec3des of teac?ling science at. : SMIL~ w:IE?l yo;~ f!T-'AD :.-:: Silv~;Jubiiaria~~ ~11 i~cl;de Si~ter high school, nursing school and college : -Kathfee:i Bush ur, a teacher at St. leve!s in the Cleveland, Toledo, Joliet STILL f..OI'OEdwarc:l Ashland,.from 1963 to 1968; and Chicago dioceSc. Sh~ is a gTadaate THIS I A!! and Siatff Mary Ann Clar"9 at St. Jud~ of St. A!uis Hospital S:hool of Nursi.ng; from )963 to 1968, and St. Procop th~ her bachelor'~ degrff ,11 fMm CuUt!ge .~ WELL WIT!! .l.. WALKE!l Jollowini year. _: .. of St. Francis and her mast~rs from De : S -Co h h b h r Paul Unive:sity.Her gradl:ate si,1dies-/I~ 1&-.c.-011 1ne~ w o as a ac. e or s h be C L WEICH ~~A_~JS 6 feet degree rr.,m the Coalege of St. Fnncis ave en at at.;1oiic. Loyola and Notte : and a master's from De Paul University, Damf! univt!rsitie$. .. : has bee:r a teacher in a number of ChiSi:iter Agnt!s ha.Hl si:itu. Marie Van a.. -= of &!;en Hi1J111 car~ and' Joli.t dioces~ school.:S. Since E ~CB 1964ahehaabeenatSLFra:icisAcademy 1 4 0 :-tO\'ED TO HAP.! 1n Jo11e., where s':e no ... -orks i";M2.erel.Y l-?.16-5Z,i-9 9 .. ..._RC nAP!'r DAY T:fA~fK YOU 'buainesaofficeand isa:sistantlibrarian. : V/CATIO~J TILT., SE?T .. ...~.. 16th Siater Con,iline hs a brother and sis-_.:~ &er. Joaph Horak and Victoria ~avlik. 1.:-.'botli iiow 6vin1, in Dlinois... _,:; __ : .. :~ ~-.::.~-. : :>.. . tsk r or a jole )70

PAGE 274

\ \ 000471 Legal Precedents Re: Life-Support Beginning with the Quinlan cas~, several courts have h~ld that th~ right co privacy in matt~rs concening one's own body, as developed in Griswold v. Connecticut and Roe v. Wade, ia broad enough co ~ncompass a pati~nt's J~ci~lon to J~clinu life-sustaining treatment under certain circumstanc~s. CourtB have al~o used the common law right to be fr~t:! from bodily inva~ion as a suppl~mcnc or alt~rnative to the constitutional right argument. Many of th~ most rec~nt cas~s conc~rning this issu~ hav~ involv~d incomp~c~nc p~rsons, e.g., infants and comato~e pittients. Howi!Vdr, thert! ar~ some cases involving comp~ccnt pt:rsons. and chose involving incompetents often contain languag~ rcf~rring co comp~tcnt persons. Bartling v. Superior Court (Gl~ndale Adv~ncist Medical Center) This C~lifornia cas~. decided Dec. 27, 1984, is quite analogous to th~ situation now confront~d by liLMC. Thu puci~nt was a 70-y~ar old man suff~ring from cmphys~ma, chronic rc~piratory fail ure, artt:riosclerosis, an abdominal ant:urysm. a maglignanc tumor of the lung, and a histo1y of chronic acute anxiety/dcpr~ssion and alcoholism. Mr. Bartling had sign~d a "living will .. and made a declaration stating that he no longer wish~d to "continue the bur den of this artificial existt:nc~ which I find unbearable, degrading and d~humani-zing." He died b~fort! the appellate court hearing. but the court ruled on the petition rcgardl~ss. le held chac ch~ right of competent adult patients, with serious illness~s which are probably incurable to have lif~-support cquipm~nt disconn~cced oucw~ighs the intdrests ofThe state in thu preservation of life. the prevention of suicide, maintaining th~ ethical int~grity of the medical profession, and th~ protection of innocent third par ties. Note ch~ particular r~levance of the following language co che situation at BLMC: Th~ most significant of these interests is ch~ pres~rvacion of lif~. This is a prime concern to Glendale Adventist, which submitted a d~claration to the effect chac it is a Christian, prolif~ ori~nc~d hospital, the majority of whos~ doctors would view disconn~cting a lif~-supporc syscem in a case such as this one as inconsistent ,.) 7 /

PAGE 275

Page l\Jo 000472 with the healing orientation of physicians. We Jo not doubt the sincericy of real parties' moral und ethical beliefs, or their sincer~ beli~f in the position th~y hav~ taken i~ this ca~~-How~v~r, if the right of th~ paci~nt co s~lf-d~tcrminqtion as to his own m~dical cr~ac1nent is Lo have any 1ut:ar,ing at all, it must b\! paramount co tht: inter
PAGE 276

0 0 04 73 ., Page Thrt:c Matt~r of Conservacorahip of Torres Thia Minn~aota caa~ was decided November 2. 1984. The Supreme Courc ~f Minn~sota held that a person's conscitutionbl and/or common law right co forego lif~-auataining treatment, while not absolute. may be overridd~n only if th~ ~tate's int~r~sts are comp~lling. A footnote.in the opinion stated that a court ord~r is not r~quirc,l in sicuatio'ras wh~rc the attending doctor, the family and tht: t!thics coDIDittt:c ar~ .in ~srtt:eruent, howt!v~r., ... lhree. justices diss(;;nted from the footnote. In the Hatter of Conroy In this cas~, d~cided January 17, 1985. the Supr~mc Court of New Jersey found chat through the doctrine of informed consent, an individual generally has the right to d~cline to hav~ any medical treatm~nc initiated or continu~J. While the right is not absolute, th~ court found that th~ state inter~st in pr~s~rving lif~ will~ usually not foreclose a competent p~rson from d~clining lifesustaining treacm~nc "b~c.!aus~ tht! life thu.c th~ state is set:king co protect in such a situation is ch~ life of the same person who has competently decided to forego the medical interv~ntion; it is not som~ other actual or pot~ntial life that cannot adequately protect ics~lf.11 486 A.2d at 1223. Crouse Irving Hospital v. Paddock This is a New York case decided January 15, 1985. The court held that ~v~ry adult of sound mind has th~ right to d~tcrmine what happen:;; co his own body, including refusal of unwantt:d rru.:dical treatmt.!nt. Huwt!ver, the court found thal the pati~nt could nut refuse blood transfusions after ~l~cting to have surg~ry. In re L.H.R. This is a Georgia case, decid~d October 29, 1984, which held chat a competent adult patient has the right to r~fuse medical treatment in ch~ absence of conflicting scatc interest. ;J(..sarber v. Superior Court of State of California This cas~. decid~d October 12, 1983, involv~d criminal charges against two doctors for acceding LO a p~tient's family's request co disconcin~~ life-support equipment and incrav~nous tubes. Th~ court found that a comp~t~nt adult patient has the legal right co refuse medical creacmcnt; a physician has no duty co continu~ use of life-SU$taining machinery after it has become futile in the ~1pinion of qualified m~dical p~rsonncl; and there is no l~gal rc~uirement of prior judicial approval before any decision to withdraw life support for t~rminally ill paci~nts can be made. f J-73

PAGE 277

000474 Page Four Suicide Issue ....... Several cases discuss the. incerest the state has in preventing suicide and its relevance to a person's right to decline medical treatment. In Bartling, the court found that disconnecting a venti lator was not tantamount co aiding a suicide because it would merely hasten the patient's inevitable d~ath by natural causes. In Superintendent of Belchertown State School v. Saikewicz, a Maasachus~tt~ court atac~a tfiat th~ und~rlying stat~ ~nter~st is the prevention of irrational self-destruction, while the situation presented is a competent, rational decision to refuse treatment when death is inevitable and the treatment offers no hop~ or cure or preservation of lif~. Finally, the court in Conroy found that refusing medical intervention merely allows ch~ diseas~ to take its natural course; if d~ath wer~ ev~ntually to occur, it would be the r~sulc, primarily, of the underlying disease, and not the result of a self-inflicted injury. In addition, rejecting her artificial means of feeding would not con~titute suicide, as the decision would probably be based on a wish co be free of medical intervention rath~r than a specific intent to die, and her d~ath would result, if at all, from her underlying medical condition, which included her inability to swallow. 486 A.2d at 1226. J" .~ .. .~

PAGE 278

i' t I I ~1EMBERS MAKE PRESENTATIONS TO COUNCIL In rl'Sponse to the President's letter of June 1984 inviting members to make their views an_d concerns known to Council, three members were imited to attend Council and make presentations. It was generally felt that this pro\'ided an opportunity for memhers to meet the Council .1 nd to darify mi~conc\'ption~ about the workings 1f tJw Cnlll1ge. < ,u n( ii ,tl,t dC',t,t ed ~lm,e tim<' to considering ,!hlr rrH',rns by \\ hkh the aftivities of the College ,nl,i h" ,,,,1dl more vjsible tll both the profession .. J! ,d th\! public \\'hik no definite conclusions \\ l'J:e rcc1chld, the Executive Committee was djr,, h~d tt, ,,mtinue to consider the issue as 1 r,~,1tkr ,,f prfr,rity. h( fa,,uti\"t:' ~J~o reported t(> Council that ,, n"-id, r,,thm ,.,,,~ bc,ng gi\'en to holding some "f :lw me-dings ni the F.xtrutive Committee in Jiff t::--t;Jnt pi1rtc; l1f the Pro\'ince. The Exerutive C,,mmittlt' would then be available to mPet with :i;:mbl'r~ nf the lix,11 mC'dical communitv to ,~i~l'ntativcs from the Catholic '~\,,Ith As$ociatilm of Canada and th(' Law ,~c:ftnn C ummission of Canada. It was felt that this l'"int st~lknwnl provid'-'d phy!-tidans and ,:h\r ht'."?!th prnf,~,i, ,n,,Js with a U'-l'ful S(.Jlt 0 0 04 75 INTERIMREPORT November 1984 of guidelines. The Council supports these guidelin~s and recognizes that a "Do Not Resuscitate" order for a patient is appropriate in certain situations. If, in ihe course of c~ring for a dying patient, consideration is given as to ,,,hether to re5uscitate the patient when death occurs, the follo,,ing protocol should be implem~nted. 1. Clinical Criteria 1.1 \-Vhen the patient's condition is such that a decision should be made as to whether a "no r~uscitation" order should be written, that condition should be asses~<>d according to certain clinical criteria. 1.2 Those criteria are the best reasonable estimates made by the responsible physician, and a second staff phy~id,rn where appropriate, about the fol10wing: 1.2.1 the irreversibility of the patient's condition and/or the irreparability of the damage it has done; 1 .2.2 the length of time that it can be expected that the patient wiJl Jive with intervention or without intervention; 1.2.3 the consequences of the "no resuscitation" order, i.e. that.it m"y lead to the death of the patient before the time the physician has estimated. 2. Procedural Guidelines \\'hen the diniGll assessm(nt iustifies the ,,.,riling of a "no resusdtation" order, the follcm,'ing procedural guidl~lines are n~l"om m
PAGE 279

Competent patients have the right to make decisions about thC'ir treatment, if the patient so \vishes, family members may also be consulted; \\Then the patient is incompetent, the appropriate member(s)of the patient's family should normally be closely involved in the decision-making process. 2.1.2 The opinion of nursing staff caring for the patient should be sought; the opinion of other health care professionals involved may be sought, where practical. 2.1.3 If the attending phy~:ician h~ss nuu~ts about the clinical decision, a serond opinion should be obtained from another physician. (There may be circumstances in which a lack of time or unavailability of another physician predudes obtaining a second opinion.) 2.1.4 A "no resu~citation" order shall be duly recorded on the patient's record. ,.2 Tinplt:'l,,:;.~.:3fion 2.2.1 The '-nJlcr,111( ~.lf discu~~ions with the patie:nt and the family, ,1nd \'\ith the hospital staff, should be recorded in the chart along with their views. The physician consultants should record their opinion as a (On~u!fanl's note. 2.2.2 The health care personnel involved in the care of the patient should be informed of the decision taken and of thErationale for that decision. 2.2.3 The attending physician and the nursing staff should review a "no resuscitation" order at appropriate intervals. 2.2.4 A request by the patient to rescind a "no resuscitation" order should be implemented immediately. 2.2.5 If th!'re are unexpt.--cted changes in the pJtic-nt's condition, a nur5-c.> or another physician may rescind a "no Tl'~uscitation" order until the patient's nmJition can be reasses~fld by the .1t1cnding physician. 2 000476 3. Care of the Patient Pa11iativC' care to al1c,ic1te the nwnt,11 and physical discomfort of thf' ?~tiu,t ~h\ ,,,:d be provided at an times. MEDICAL REVIEW COM~11TfEE UNDER REVIEW The President reported to Council that a Tripartite Committee had been established to re\-iew policy issues and procedures related to the referral of OHIP claims to the ~1edical Review C0r.1:-:1ittee and the procedures foJJowed by the C"';;rn1ittee itsdf. In rc5p(;nsct0 c-itici~:n from the profession concerning the ~1edical Review Committee activity, the Executive Cc,1rn1,iUce of the College met with both the Ministt'r of Hl'alth and \,ith the Ontario ~1edka1 Asso(iati(m and recommended that a Tripartitl') group be established ,-vith senior representatin.!:, frf,m the Government, the Ontario !\edica1 A~~nciJtiw Commith.c 1s producin.g a distorted view of the Ct,llegc so far as its primary role of devel0ping and maintaining standards of medical prartkt."'. n,e Pnsident w~nt on to sa, that th( .. re !"1as bc(n l.._ .J Cl11,tinues to be ronsidt:iJblL misu ndu ~l,mli; ng as to how the audit svsfl.>m ,,orks and \\'hich elements are entire)); ou !side th(' Collc:ge's control. The Tripartite Committee so far has flnsidered issues such as the provision t0 physicians of an abbreviated personal daims profile which might a1ert physicians to patterns of billing which could ]cad to referral to the Medical Review Committee at a later date. The Committee is also considering means by which the assessment of physicians' bi11ing patterns can be accelerat()d by OHIP so that if a ref err al is to be made it can be directed to the MRC as soon as the bil1ing pattern b<>rnmes questionable in the \'iew of OHIP. A major concern of the profession has been the de)ay in referral of physicians' daims lo the Ml')dical ReviC'w Committtte which m('Jn~ that a physician may be revi(wf:'d for daims t.xknding

PAGE 280

Ct 533-4935.0 Contra 000477

PAGE 281

OTA Task 5 10/15/85 Contract 533-4935.0 -26 ) 0 04 78 10) Is the elderly patient an active participant in decisions about initiating and continuing care and about weaning? Is she/he able to give informed consent? What are the methods of detennining the patient's preference? What is the role of living wills and other advance directives? According to Make, elderly patients are active participants in decisions concerning ventilation, and they often are able to give informed consent. Age per se is not a limitation in this area. In many cases, physicians who are aware of a possible need for mechanical ventilation or other lifesustaining techniques have discussed these issues with the patient well in advance of the need for the techniques. Patient preference concerning these techniques are known and documented by these physicians. However, in other cases, these issues have not been discussed, patient preferences are -not known, and the patient may well be incompetent to give infonned consent. This is due to temporary altered mental status because of respiratory failure, and associated hypercapnia, acidosis, and/or hypoxia. Living wills, other advanced directives, as well as the decisions made by close family members are very important in directing care under such circumstances. In contrast, Frownfelter et al believe that elderly patients are often not active participants and that their preference is not an issue in the deci sion. Many patients are {or are perceived to be) unable to understand, poor cornnunicators or historians, not "responsible" or capable of making decisions, and difficult to deal with. There is usually more involvement by the patient when the care is more long-term. Living wills are accepted on a state-by-state basis; there seems to be a great deal of variation. This is

PAGE 282

OTA Task 5 10/15/85 Contract 533-4935.0 -27 -0 0 0 4 7 ~-: confirmed by Alba who states that, although the living will is not a legal document in New York State, the patient's wishes are respected. Plurnner states that mental competence and clarity, regardless of age, are important factors detemining whether or not a patient participates in decisions concerning initiation, continuing mechanical ventilation~ or weaning. Weaning decisions are made by physicians and discussed with the patient. The decision to extubate requires satisfying the clinical criteria already mentioned as well as a conscious, cooperative, well-informed patient. Infonned consent is obtained from the mentally-intact patient regardless of age; interrogation of the patient is the best way to determine preferences. Alternatively, if not able to be interrogated, the family -usually can provide infonnation on preferences. Comatose patients can be extubated. Living wills and other advanced directives are honored in Plurnner's institution. Dr. Alba believes that if the patient is fully competent and what is re quested is within the law, the request will be honored, including refusal of treatment. The patient has a right to refuse treatment in writing; this is respected in New York State. With an incompetent patient, the families wishes to withhold treatment cannot be honored unless they go to court. O'Donohue believes that the patient must be involved in the decision for long-term mechanical ventilatory support unless severely mentally-impaired. The goals of long-term ventilator management could never be accomplished in a

PAGE 283

OTk Task 5 10/15/85 Contract 533-4935. 0 28 Q O O 4 8 {) patient who is not desirous of this form of therapy. In patients who are acutely ill, the decision for intubation and mechanical ventilation may be made in consultation with family or the nearest living relative. In the acute circumstance, patients are usually not capable of making this decision alone. Living wills or other advance directives would obviously have to be considered in the context of their legality relative to the acute management of patients in respiratory failure. Interpretation may need to be obtained from the hospital attorney in situations where the will is in variance with the medical op_inion or the stated desires of the family. Indihar notes that with the chronically-ill patient, it is becoming very common to ask the patient initially, before consideration of life-saving technologies, to decide whether or not they wish to be placed on a ventilator or cardiac-resuscitated. Interestingly, with time, education, and support, only about 50% of the patients make the decision not to be ventilated or resuscitated. The usual answer is, "If you think I' 11 make it, please use the machinery. 11 As already noted, Byrick relates that, in Canada, major factors influencing treatment decisions in severely ill patients have been concisely reviewed by the Canadian Law Reform Comnission. In practice, it must be emphasized that competent patients can refuse ventilatory care even if refusal will 1nevitably lead to death. The physician's obligation is to inform such a patient fully of all options and consequences. Increased patient participation, prior to the need for the institution of ventilation, is ...

PAGE 284

OTA Task 5 10/15/85 Contract 533-4935.0 2fY0481 essential. These patients can not be treated against their will, and the role of the family in decision-making is minimal. Treatment of incompetent persons with initiation of ventilation, weaning and withdrawal of care fs more problematic in Canada. A decision in favor of life is always undertaken if treatment is considered "reasonable and useful". The bias mustalways be in favor of life if the patient's wishes are not known. This places the burden on those who would stop treatment or not initiate life-supportive therapies to justify a decision which would result in death. The family is always involved as "surrogate decision-makers" for the patient. Byrick always emphasizes that he wants the family to decide what the patient would have wanted under these circumstances, not what they would want. This substituted consent must also consider quality of life issues. 11) How and to what extent does practice vary in different parts of the U.S.? The contributing authors to the above question were selected, in part, because they represent a variety of professional disciplines, care settings, and regions of the U.S.A. Inherent in their individual answers already are a variety of opinions that reflect these regions. O'Donohue specifically noted that the major differences in practice are related to the size and capability of the institution more than the geo graphic location. Small and rural hospitals frequently do not have an adequate team to address all of the problems relative to long-term ventilator care. Larger medical centers are more likely to have adequate personnel and

PAGE 285

( OTA Task 5 10/15/85 Contract 533-4935.0 -lP0-04 82 skills. There are, of course, individual exceptions. Some large institutions are not prepared for this form of therapy, and, in fact, may not wish to be involved. Facilities for long-term ventilator care, including necessary support services, are also more likely to be available in urban areas than in small rural comunities. Frownfelter et al related that there are tremendous differences even from one hospital to another in the same community. Plu11111er does not know how practices vary in different parts of the United States, but he suspects that the variations are minor. (12) What is the impact on treatment decision of existing legislation or particular legal precedents? All contributors agree that the uncertainty and risk of medical liability is a major issue. Legal precedents are important as most doctors are con scious of their vulnerability for lawsuits (Frownfelter et al). All physi cians are quite concerned about the possibility of litigation if incorrect or improper decisions are made (Plunwner). However, he feels that treatment decisions are influenced little by existing legislation. Make believes that legislation and legal precedents are very important in influencing treatment decisions, particularly when patients cannot give informed consent, and when the will of the patient is not known. Due to the rapidly increasing number of malpractice claims and rising malpractice premiums, physicians are acutely aware of not overstepping legal boundaries. Indihar states that withdrawal of life-sustaining machines has been a legal dilemma for many physicians due to recent court cases, none of them yet successful, in which the physician,

PAGE 286

OTA Task 5 Contract 533-4935.0 10/15/85 31 V 00483 despite carrying out the patient's and family's wishes, has been sued for criminal intent and murder.* At Rancho, the rule regarding 11no codes" was approved by the County Board of Supervisors; th-is was because Rancho is a county hos pi ta 1 According to Prentice, court decisions in California have ruled that the patient has the choice in the question of extension of life. At Goldwater, there is a strong influence of existing legislation and legal precedents in view of the malpractice climate. Byrick believes that prognostic uncertainty is the major issue prompting the use of ventilation in circumstances where therapy _is ultimately useless. Legal implications of withdrawing such care then become important for the physician decision-maker. Legal precedents make physicians wary of limiting the care if the decision has not been fully discussed prior to clinical deterioration. Clarification of the physician's legal status would facilitate appropriate decision-making. According to O'Donohue, one of the major problems with Medicare legislation is that it does not provide a financial incentive for mechanical ventilation in the home or at alternate conmunity sites. Under the prospective payment system, hospitals clearly have an incentive for early discharge, but the same incentive does not exist for treatment centers outside of the hospital to *Dr. Indihar is referring to cases such as Barber V. Superior Court of State of California. Please note legal cases provided by Or. lndihar for review by OTA (Appendix).

PAGE 287

OTA Task 5 10/15/85 Contract 533-4935.0 320-0 0 4 8 4 accept patients who require mechanical ventilation. Often reimbursement is available only for licen~ed practitioners in the home where appropriate care could be rendered by less-skilled individuals. Thus, current Medicare policy tends to inflate the cost of home care and often leads to exhaustion of available funds. When asked to provide additional comments about the effects of current legislation, O'Donohue responded: "Globally, legislation for reimbursement of Medicare and Medicaid patients favors hospital reimbursement with severe limitations on reimbursement for special care of patients outside of the hospital setting. Th;s becomes particularly important with the increased pressures for early discharge of patients who are more aiutely ill. It is extremely difficult to find facilities which are willing and able to accept patients who require mechanical ventilation, primarily because those facilities are not appropri ately reimbursed for the type of care they are being asked to render. Funds which are available for home care are also severe ly limited and at times the regulations for reimbursement of only licensed practitioners tends to inflate the costs when these ser vices could, in fact, be adequately provided by caregivers with less skill and formal training. In other words, the very high cost of skilled caregivers frequently exhausts available funds and results in home care becoming prohibitively expensive. This is not to say that licensed practitioners may not be necessary in some individual cases but there needs to be an option to allow the least expensive care possible to fulfill the needs of the in dividual patient." "Clearly, current legislative decisions regarding reimbursement have an impact on treatment decisions in that patients may stay in the hospital longer than necessary if appropriate resources are not available for long term ventilator care, or alternatively patients may be discharged from the hospitals prematurely to sites that are not adequately prepared for the management of this type of i ndividua 1."

PAGE 288

OTA Task 5 10/15/85 Contract 533-4935.0 -33 9 0 0 4 8 5 An Invited Conmentary As a supplement to this report, the following cornnentary was offered by Sister Corrine Bayley, Director, Center for Bioethics, St. Joseph Health System, Orange, California: 11I think that the issue of withholding/withdrawing ventilatory support from permanently comatose patients, while still troublesome, has achieved a considerable amount of consensus in recent years. Several court cases, from the Quinlan case in 1976 to the recent Nejdl/Barber case in Los Angeles have expressed the opinion that life-prolonging treatment need not be provided if it will not benefit the patient. Many hospitals have recently fonned ethics coR111ittees and have developed guidelines regarding the discontinuation of mechanical ventilation in patients for whom there is no reasonable hope of recovery. In 1982, the American Medical Association's Judicial Council stated, 'Where a tenninally-ill patient's coma is beyond doubt irreversible and there are adequate safeguards to confirm the accuracy of t~e diagnosis, all means of life support may be discontinued.' Several medical associations and joint medical and bar associa tions have written guidelines affirming that approach. 11 "One that I support is the recent Durable Power of Attorney for Health Care law enacted in California. This statute allows a competent individual to name someone to make health-~dre de cision~ for him/her in case the signer becomes incompetent. Since one of the main things we need to k,,Jw in situations of medical treatment is what the patient would have warte~, this seems to be a helpful approach."

PAGE 289

OTA Task 5 Contract 533-4935.0 10/15/85 -34 0 0 0 4 8 6 (13) How does practice in the U.S. compare with practice in selected other countries? Why and with what results? All involved contributors were asked to conment about their knowledge of foreign experiences. One major contributor (Byrick) related his own person al observations from Canada; Byrick states that the overall Canadian experience is fragmented and poorly described. He has noted that the College of Physicians&. Surgeons (Ontario) have prepared and distributed guidelines for DNR orders (Appendix). There is a false assumption that the Canadian malpractice atmosphere is the same as in the States. The major differences are that: 1) there are no lawyer contingency fees; 2) all physicians are insured under a single physician-run Canadian Medical Protective Agency (CMPA); and 3) malpractice issues are seldom settled out of court. If a -case comes to court, it must have true merit as malpractice. Thus, the Canadian physician is less concerned about litigation than his/her counter part in the U.S.A. Byrick concludes that decision-making factors are hard to sort out which determine a DNR order in a critical care setting. However, there seems to be little difference between Canada and the Ll.S.A. regarding the implementation of mechanical ventilation; the differences, if they exist, are in withdrawal. Frownfelter et al felt that the United States seems to have little to offer ventilator-assisted individuals compared to England and France. Our health care system and lack of conmitment to the needs of the patient with ventilator-assistance accounts for the difference. Plummer believes that the French system provides for a community level of care available to patients who require mechanical ventilation that is not present in our country. Both

PAGE 290

( OTA Task 5 10/15/85 Contract 533-4935.0 -35 -0 0 0 4 8 7' the French and English systems seem to be successful because of professional expertise in this area and the patient selection and education which occurs before _placement in the home or alternative conmunity site. O'Donohue stated that other countries, which have been most successful in managing ventilator assi~ted patients outside of the hospital, have usually utilized a regional approach with regional centers providing expertise for this type of care. Appropriate funding has been made available and a hierarchy of care has been established, including an acute care hospital, an intennediate care facility, and a home care organization which can provide services, equipment, and personnel. For every hospital in the United States to attempt to provide this type of care would be extremely inefficient, and the quality of care would suffer considerably. In 1983, as a Fellow of the World Rehabilitation Fund, Inc., I {Goldberg) had the opportunity to study the issues facing ventilator-dependent persons in England and France {World Rehabilitation Fund, Inc. International Exchange of Experts and Information in Rehabilitation Fellowship Report #20. Home Care Services for Severely-Physically Disabled People in England and France. Case-Example: The Ventilator-Dependent Person). What follows is a description of the systems in place in those two countries that serve the population as it relates to the OTA question. I will incorporate several co11111ents from Dr. Spencer {London) I specifically requested for this OTA project.

PAGE 291

OTA Task 5 10/15/85 Contract 533-4935.0 360-0 04 88 England The 11Responaut Program" is an established system of services avaUable to ventilator-assisted people*. This regional program features the Phipps Respiratory Unit {PRU), a base-unit at St. Thomas' Hospital, London. The PRU provides Dr. Geoffrey Spencer and his highly-experienced respiratory rehabilitation team a site for comprehensive care, preparation for home discharge, and subsequent reevaluation. Of major significance is the PRU home maintenance service, which provides prompt emergency attention and personal surveillance of each responaut in the community. Responauts can be found at home with their families or at a variety of suitable community options. They have available access to learn about, acquire, and use technical aids, which provide great deal of independence. Nevertheless, the elderly responaut may require a group-living arrangement when family members are no longer available or able to provide personal care (Cheshire Home). The significance of the "Responaut Progam11 is that a system is in place that makes posc;ible essential and comprehensive institutional and conmunity_ services and that choices and options are available. This program does not mean that elderly persons are sustained needlessly and/or exist in large numbers because the system is in place. However, when a general practitioner or specialist chooses mechanical ventilation for their patient, there are available resources to enable this to be done properly. A responaut is the term coined by ventilator-assisted English people during the early Space Age. Like the astronauts, they wanted to venture out of institutions into the unknown -their conmunities.

PAGE 292

\ OTA Task 5 10/15/85 Contract 533-4935.0 #Q0489 Spencer states that there are major differences between England and America over when, how, and where it is appropriate to use long-tenn artificial ventilation. Clinical practice in England is more conservative; there is considerable reluctance to embark on long-term ventilation unless there are strong individual positive reasons for doing so. Indeed, part of his job over the past seventeen years has been to advise medical colleagues how best to allow patients receiving artificial ventilation, for whom its continuance seems inappropriate, to die in reasonable peace and di_gnity. Medical and public opinion in England holds strongly that it is morally, professionally, and socially inappropriate to insist that artificial respiration be continued just because it is possible to do so. In England, the wishes and opinions of the patient, his/her relatives, and medical advisors have overriding priority, regardless of legal considerations. Dr. Spencer noted that the doctor in charge, after due consideration with all concerned, is the decision-maker in England. He personally thinks that the decision must never be passed to relatives, who are too close for objectivity and live thereafter with the guilt of a negative decision. A positive decision requires a young patient, normally under forty, of at least average intelligence, who will be able to develop intellectual skills and have realistic future objectives in life. Although age is not an absolute factor, a positive decision is seldom made for patients over sfxty. Spencer believes that the prognosis of the underlying disease is the all important evaluation factor. Correct individual evaluation should make the decision obvious. Institutional norms and guidelines do not affect the

PAGE 293

\ OTA Task 5 10/15/85 Contract 533-4935.0 -38 -0 0 t/ q () decision; the decision depends solely on individual assessment. Finally, Spencer remarks that legislation and legal precedents hardly affect the decision-making process ,n England. He believes that this is a major difference from the current realities in the U.S.A. France The French have a system in place which permits multiple options for the patient requiring prolonged mechanical ventilation. The system features 28 regional associations which provide needed services, care-monitoring, and quality-assurance. Regional associations vary, but are modelled after the original ones created 1n_the 60's: the ADEP (Paris) and the ALLP (Lyon). These original associations today provide essential services to 1200 persons in Paris (ADEP) and over 700 in Lyon (ALLP). Of note, those served are not only ventilator-assisted, but also oxygen and other technologies-dependent. The services were expanded at the request of governmental reimbursement authorities, who helped create the system in the first place. The regional associations are federated by a national organization (A.N.T.A.D.I.R.) which has recently been responsible for the development of the newer associations. In addition, A.N.T.A.D.I.R. fosters national research and surveys providing needed data and analysis by the regional associations (to improve services), and by the government (todetermine public policy). As a result of medical, technical, social, and administra tive studies, the number of ventilator-dependent patients are known, and many of the questions posed by the OTA have been answered in Franc;e. For example, at a recent national meeting in Lyon (3/85), it was stated that there are

PAGE 294

I OTA Task 5 Contract 533-4935.0 10/15/~5 uoo:rqL -39 1approximately 50,000 people in France with chronic respiratory insuffi ciency who require specialized care. Of these, 12,000 persons at home receive respiratory care for 12-24 hours/day at home. Among this subgroup are 1200 people who require prolonged ventilator-assistance. A.N.T.A.D.I.R. is currently revising the future procedure for home ventilator care as a national policy. As before, all decisions will be made by a prescribing physician (generalist, specialist), with the patient and family involved. This is vital because, in France, the home care of the ventilator assisted person depends upon the role of the family and self-care. A de fined prescription will be standardized; each will be reviewed by a physi cian in a regional association. Only after modification or approval will the .. prescription be funded and implemented. The association will continue the surveillance of the patient at home to be certain that the prescription is medically-appropriate and delivered as intended. Previously, it was possible for a physician to write prescriptions directly to the reimbursement authority and to have ~t filled by a pharmacy or vendor. Because this proved to be inappropriate and expensive, this new process will be established by A.N.T.A.D.I.R. This will be only one of many cost-saving measures estab lished by A.N.T.A.D.I.R.; others include negotiation with manufacturers and reimbursement authorities, mass-purchasing, inventory and depreciation reduction strategies. Oil

PAGE 295

OTA Task 5 10/15/85 Contract 533-4935.0 40 _o o o 4 92 In France, the physician and family have a choice of options which include services at home, independent living center (foyer), secondary intermediate center (transitional care), and respite care. In addition, the French government has authorized officially a personal care attendant to supplement family members. These options are viable for the elderly. At the 3/85 Lyon meeting, the French were asked by the English if they would provide such services to a person over age 65. The answer was "oui". When further questioned, the response was, "mais, c'est nonnal!" It is clear that cultural factors play a large role in France. The Netherlands Other nations have begun to recognize that the ventilator-assisted individual represents a medical and societal issue to address at the national level. In August, 1985, all identified physicians that care for such patients in Holland were assembled at the State University, Groningen, to attend a roundtable conference about these realities. Under the direction of Henk J. Sluiter, M.D. Professor of Pulmonary Diseases, and Head, Respiratory Care Unit, the meeting assembled the following data and conclusions: 1) Number of home-care patients (ventilator-dependent): 50 2) Number of chronic ventilator patients in hospital or specialized units: 48 3) Nearly all patients are ventilated only part-time during 24 hours. 4) Indications or criteria for this treatment: not standardized.

PAGE 296

l OTA Task 5 10/15/85 Contract 533-4935.0 41900493 5) Total number of patients who should receive the treatment: unknown, depends on the criteria of each center. 6) Marked differences between the different centers in: a. diagnostic categories; b. therapeutic modalities. (e.g. Utrecht: nearly all patients via tracheostomy (TIPPY); Groningen: many patients with cuirass ventilator). 7) Only an exceptional patient up to now treated with oral positive pressure ventilation (MIPPV). These preliminary data have been offered to the OTA with the understanding that proceedings will be available in late 1985.

PAGE 297

( ( Care for Life Contract 533-4935.0 LIFE SUSTAINING TECHNOLOGIES AND THE ELDERLY PROLONGED MECHANICAL VENTILATION TASK 6. CONCLUSION AND IMPLICATIONS October 15, 1985 Prepared By: Lu Ann Aday Marlene J. Aitken Susen Dunmire Donna Frownfelter Sam P. Giordano Bernard Goldstein Frank J. Indihar 000494

PAGE 298

( Contract 533-4935.0 TABLE OF CONTENTS OFFICE OF TECHNOLOGY ASSESSMENT LIFE SUSTAINING TECHNOLOGIES AND THE ELDERLY PROLONGED MECHANICAL VENTILATION Task 6. Conclusions and Implications 1) How important and how urgent are problems related to 0004:)o mechanical vent11ation? 3 2) To what extent do these issues have special significance for the elderly? 6 3) What issues can be settled by professional, community, or private sectors (without congressional actions)? 8 4) What issues require congressional actions? 11 5) Is it feasible to propose treatment guidelines for mechanical ventilation? 12 6) What aspe~ts of mechanical ventilation and the issues it raises call for additional research? 14 7) What is the potential for reducing the rates of lung disease and other conditions leading to ventilatory insufficiency and failure in elderly persons? What po-tential problems can be prevented? 15 8) What particular issues and problems should be priorities public attention? 17 9) What existing problems may be amenable to public policy change? 19 l. 10) What are some of the public policy options? 21 References 22

PAGE 299

( \ OTA Task 6 i0/1S/1f O 0490 -1 -Contract 533-4935.0 LIFE SUSTAINING TECHNOLOGIES AND THE ELDERLY PROLONGED MECHANICAL VENTILATION TASK 6. CONCLUSION AND IMPLICATIONS The questions raised by OTA in Task #6 were asked to selected contributors of previous tasks and other appropriate experts who responded to each question as an original contribution. Their answers were collected, reviewed, and organized by Ed Roberts, Founder, World Institute on Disability, and his staff, especially Patrick Connally, M.A. When possible, efforts were made to relate conclusions and impli~ation to infonnation presented in the preceeding tasks of the report in order to provide qualification and further amplification. The expert contributors were: Lu Ann Aday, PhD -Research Associate (Associate Professor), Assoc~ Director for Research, Centtt fur Health Administration Studies, Graduate School of Business, University of Chicago Marlene J. Aitken, MAMS, OTR/L -Study Director, Research Project Specialist, Center of Health Administration Studies, Graduate School of Business, University of Chicago Susen Dunmire, MA -Research Project Assistant, Center of Health Administration Studies, Graduate School of Business, University of Chicago

PAGE 300

( OTA Task 6 Contract 533-4935.0 10/15/85 -2 -Donna Frownfelter, RRT, PT Editor, Chest Physiotherap,v and Pulmonary Rehabilitation. Board Member, Chicago Lung Association; Co-Chairperson, Chicago Lung Association Ventilator-Dependent Adult Project; Director, Chest Physical Therapy, Rush-St. Luke's Presbyterian Medical Center, Chicago, IL. Sam P. Giordano, MBA, RRT -Executive Director, American Association for Respiratory Therapy, Dallas TX. Responsible for initiating two national surveys re: ventilator-dependant adults (1983, 1985). Bernard Goldstein, PhD Professor of Sociology; Rutgers, The State University, New Brunswick, NJ. Dr. Goldstein has a long-term interest in medical technology and its impact on the delivery of hea 1th care. ~~ank J. Indihar, MD Practicing Internist/Pulmonologist. Innovator of chronic respiratory care unit at a large medical center -Bethesda Lutheran Hospital, St. Paul, MN Ed Roberts, Founder, World Institute on Disability. World authority and public policy expert on issues concerning disability and the independent living movement. A ventilator-assisted person during all of his productive adult life.

PAGE 301

\ OTA Task o 10/15/85 -3 Contract 533-4935.0 000498 1) How important and how urgent are problems related to mechanical venti lation? In an attempt to promote cost-containment, the costs of providing critical care for the elderly has come under increased scrutiny. The critically-ill person uses enonnous quantities of hospital resources (Task 4 Byrick). Great amounts of time, space, personnel, and highly sophisticated equipment are used to sustain life and initiate the recovery of the critica~ly-ill. An important aspect of critical care is ventilator support, and there is a great deal of discussion in medical, political, and lay circles as to the cost and the efficacy of this care (Task 4 Byrick). Until now, no comprehensive survey initiative has been taken to detennine utilization and cost (Task 3). Many persons, professional and the laity, think of ventilator use for the elderly as needlessly prolonging the life of tenninally-ill patients. However, ventilation 1s not only used to sustain life but also to ini~iate recovery and tc allow the elderly person tr have a more proaw~t,ve life (Task 2 and 4 -Alba and lndihar). The decision to pu~ the terminally-ill individual on a respirator has generally been exclusively a medical one, with little or no thought to the long-term effects on the person or his/her family. The literature and conments from this study predict that this practice will decrease (Task 3 and 5). Many physicians before ventilating a patient are now considering the age, overall condition, and whether prolonged ventilation is the choice of the family and person. Many individuals are requesting

PAGE 302

( \. OTA Task 6 Contract 533-4935.0 10/15/85 -4 000439 "no code" through the making of a "living will". Physicians are seeking informed consent from the person if competent or from the family if the person is incompetent {Task 5). The decision to place a person on a ventilator to initiate recovery is less difficult to make. However, there are several psychosocial aspects of the consequences to consider (Task 4 Byrick, Pfro11111er, Laurie). If the person will only be ventilated for a short time, there are few problems. If not, questions of placement become relevant. There are a limited number of chronic care facilities available to care for ventilator-assisted individuals (Task 3), and most families would need extensive training to care for the patient in their home. One of the greatest fears of the elderly is the fear of dependence. In this instance, the ventilator assisted person is dependent not only on a caregiver but also a machine. The important issues of r.-'!C~ianical ventilation to the elderly seem to be more psychosocial than medical: 1) the desire to have some control over the decision to prolong their lives and 2) the fear of the dependence on their families that prolonged ventilation could create (Task 4 Pfrornner, Laurie). The cost issues, which may or may not be of concern to them, could be eased with responsible informed decisions to ventilate and the development of alternative placements from ICU's to home or chronic care facilities (Task 5). In view of the current legislation and hospital reimbursement policies (DRG Prospective Payment System), it is necessary that the issues sur-

PAGE 303

( ( OTA Task 6 10/15/85 -5 -Contract 533-4935.0 00050J rounding the use of mechanical ventilation for the elderly be resolved {Task 5 -O'Donohue). These issues, which currently apply to the elderly, may also be applied to younger patients requiring lifesustaining technologies. If the Medicare prospective payment system reimbursement is applied to Medicaid (welfare) medical payments, the tendency will be to deny this type of care to any chronically-ill patient For instance, the DRG payment to a hospital for a patient with chronic obstructive lung disease is only approximately 10 days; if the patient requires ventilation for ventilatory failure, the hospital gets absolutely no further reimbursement until hospitalized for .. 1pproximately 30 days, at which point a minimal daily reimbursement is given to the hospital. This usually does not cover the hospital's expenses. Hos-. pitals cannot be expected to underwrite the care for these patients. Is there a subtle message that such legislation is giving to the health care professional: do not waste the health care resource dollar on the chronically-ill patient, regardless of age, who needs a respirator? Another urgent issue is the prolonging of death by abuse of technology (Task 4 Alba). Many people may not be rendered brain dead by severely decapacitating cardiopulmonary conditions, but may remain either in a semi-comatose or comatose condition for many months or even years. With the law as it stands today, such patients must be maintained on ventilators until death from other causes. Is this not another example of public policy that serves neither the dignity of the person nor the ethical standing of the medical professional who must participate in prolonging death rather than sustaining life?

PAGE 304

( OTA Task 6 Contract 533-4935.0 10/15/85000501 -6 -2) To what extent do these issues have special significance for the elderly? As the population ages, there is a higher incidence of cancer and chron ic disease which may precipitate ventilatory failure. This creates increased costs due to long-tenn hospitalization in expensive ICU beds which may be exacerbated by the lack of reimbursement in some states for chronic care outside the hospital. If reimbursement is available for home care, this is a viable option. Where independent living support services are available, people can live in the conmunity (Task 4 Pfronmer, Laurie). Many acute diseases causing death and disability during the ea~ly and productive years of life are no longer problems, and chronic diseases particularly in the elderly population have become increasingly more prominent. These chronic diseases often require complex and expensive diagnostic technology to define them, but the medical interventions which are ava11nle serve primarily tvanaintain or preserve function. Respiratory and intensive care units have increased the survival of all patients with respiratory failure. However, the survival of those who require prolonged ventilator assistance is small in n1111ber and achieved only at great cost. Davis(4), however, stressed that patients with only lung disease had the lowest irnnediate, one year, and two year mortality, as well as the lowest charges per hospitalization compared with other patients 1n his institution on receiving similar ventilator support. Furthennore, Davis felt that since all survivors of the 301

PAGE 305

' OTA Task 6 10/15/85 000502 Contract 533-4935.0 -7 -critical episode (respiratory failure) have a 50/50 chance to live two more years, it is medically and ethically appropriate to continue to provide supportive care for these patients, if we are going to provide critical care for the seriously-ill .older adult population. In several studies on patients receiving mechanical ventilation, a sig nificant percentage were 60 years and older: Davis, et al (4) Mean age 66.7 Sukumalchantra, et al (10) Mean age 62 Moser, et al (9) Mean age 60.fi Kopacz and Moriarty-Wright (8) 271 over 65 Fischer and Prentice (5) 41% over 65 AART study (1) 341 over 65 In Campion et a1.,< 3 ) once patients were admitted to the ICU, the older they were, the greater th probability that they would be placed on mecha, al ventilution. Fvurteen perc~,t of the patie,,ts J:-i4 .. I~ of patients 75 and over admitted to ICU were intubated and mechanically ventilated during their course of treatment. Age of the person plays a critical role. Infants and childr~n usually have parents who care very much about them and are prepared to make financial sacrifices for them (although infants are usually born to young people with limited financial resources). Old people are particularly vulnerable because they are more likely to be alone, more

PAGE 306

' OTA Task 6 10/15/8500050~ Contract 533-4935.0 -8 -likely to be personally powerless, and more likely to have limited financial resourses. Of special significance to the elderly ventilator-assisted individual is the need for in-home service, such as personal care assistants (Task 4 Pfr011111er, Laurie). The older ventilator-assisted person usually cannot be cared for at home by his/her spouse as a child can be cared by his/her parent. The spouse will often have medical problems which limit their physical capabilities (i.e. arthritis, heart disease). In many instan ces, no innediate family is available to assist elderly persons on mechanical ventilators. As a result, there are fewer advocates for the use of ventilators by elderly as compared to advocates for the use of ( ventilators by children. 3) What issues can be settled by professional, community, or private sectors (without congressional actions)? Some ~ssues can be settled by professional, ~unmunity, or private sectors. They can be grouped under the following categories: continuum of care, funding policies, accessibility, economic incentives, standards of care, better services and equipment, "living wfll 11, and small-scale demonstration and research. A continuum of care for respiratory-dependent elderly can be developed by designating selected regional centers of expertise dedicated to this problem and by establishing a regional system to assure fully-integrated services in the connunity. This can both be accomplished regionally and integrated at the national level as shown in France (T~sk 5).

PAGE 307

.: OTA1TasK 6 1 o; b/ti6 Contract 533-4935.0 9 _o o o so 4 The professional, corm1unity. and private sectors' funding of the concepts of volunteerfsm and training could support Independent Living Centers which would assist the elderly ventilator-assisted person as they have post-polio and spinal cord injured consumers. Independent Living Centers, such as the Center for Independent Living in Berkeley, Ca 1i forn i a, offer a wide-range of services. such as peer-counse 11 i ng. attendant training. attendant referral. and independent living preparation.* Funding is not easily found to pay for essential caregiving, durable medical equipment, and home rennovation required by the ventilator assisted individual. Private third party payors have set precedent by reimbursing on an individual case basis what personnel and equipment are deemed necessary to properly support an elderly ventilator-dependent person (Task 4). It would be both cost-saving and safe if such payors would allow nor.~"cfes" ;nil personal care attendants to ~upi ', care of families and professionals. It would also be cost-effective to all sectors if existing building codes stressed accessibility and adaptability for all Americans (Task 4). Another factor in funding is that there presently exists no economic in centive for professional, conmunity, or private sectors to organize *Berkley Planning Associates, Susan Stoddard, Project Director. "Evalua tion Report on the State's Independent Living Center, Funded by AB20Y". Submitted to California Department of Rehabilitation, March 1980.

PAGE 308

( OTA Task 6 Contract 533-4935.0 1011s,asJ fJ tJ5o s-10 -support services for the ventilator-dependent person. These sectors generally look to Medicare to take the lead. It is recognized by all that comprehensi've reimbursement is required in full for those resourses necessary to adequately support an elderly ventilator-dependent person in a home setting or alternative environment. The consumer, professional, and lay connunfty must have input in setting standards for treatment and guidelines for care. There will be many exceptions, as each case must be handled individually; a "cookbook" approach is fnapproprfate. Those that actually deal and live with the care should detennine the standards based on their experience and fnsfghts. Ventilator standards of quality must be developed and used. Better respiratory equipment fs needed. What exists is often undependable, with many breakdowns that result fn life-threatening situations; only experiences from centers of expertise seem to have better results (Task 2 and 4 -Alba, Indhar). There are few consumer options to choose for a home ventilator. It would be cost-effective to all sectors ff there were more competition among home care services and medical equipment dealers. The "Living Will", being able to die with dignity, are issues the community and professionals must address. "When to pull the plug" must be established on an ethical, medical, and individual basis, or poli cies will be detennined by economic realities (Task 5).

PAGE 309

OTi Task 6 Contract 533-4935.0 10110/85 -11 000506 Nongovernmental sectors can raise such issues to public awareness. They can explore and experiment with alternatives for reimbursement and the provision of care, as the recent American experience with the hospice movement has shown (Task 4 Pfronmer, Laurie). They probably can provide some funding for small scale demonstrations and their evaluation. 4) What issues require congressional actions? Currently, individuals that have a potential for a full and satisfying life with the assistance of a ventilator find only a few limited options for care. Congress should bring together all parties involved with ventilator use issues and provide leadership in their resolution. A pri ority 1s for Congress to hold hearings and fund research to establish demonstration projects to determine how to best provide services for ventilator-dependent individuals. A normative approach must be taken to devise a continuum of care, and, at the same time, cost-out the different alternatives to determine the most cost-beneficial ones. Inmediately, Congress must begin by creating a new Medicare/Medicaid benefit that reimburses services provided to elderly ventilated people. At first glance, this may seem like an added cost measure. However, this could lower cost in the long run by reducing the number and duration of much more expensive hospital admissions which result from medical instability (Task 2). Title VII of the Rehabilitation Act of 1973 mandated Independent Living Centers. Congress should fund these centersto demonstrate cost-bene-

PAGE 310

( OTA Task 6 Contract 533.4935.0 10/15/85 000507 -12 -f1cia1 home care. Services for people with severe disabilities could be applied to the ventilator-dependent elderly. This could be one of many demonstrations showing that what would put in place for one population could serve others with related needs. Congress should consider a Federal program to establish regional medical centers that deal with special respiratory problems and prolonged mechanic~l ventilation (Task 5 -O'Donohue). These centers could be along the lines of the fonner polio centers of the 1501s or the current French system. Congress should also authorize the National Institute on Handicapped Research to award contracts for the development of less-expensive and more reliable portable ventilators. 5) Is it feasible to propose treatment guidelines for mechanical ventila tion? Treatment guidelines must be flexible enough to allow for individual choice (Ta\k 5). Guidelines are a tool to establish a standard of treatment throughout the country. They should include a description of when living at home will be successful or when other options may b~ more desireable. The American Thoracic Society has already suggested guidelines for physicians to use in prescribing respiratory equipment at home in an attempt to reduce unnecessary use of this equipment.* The *American Thoracic Society. Home Care of Equipment for Patients with Respiratory Disease. Amer. Rev. Resp. Dis. 115 (Suppl):893-895, 1977.

PAGE 311

( OTA Task 6 lU/, 5/85 -13 -Contract 533-4935.0 000508 American College of Chest Physicians has created an ad hoc task force to develop guidelines for ventilator care in the home and at alternate coanun1ty sites.* The establishment of treatment guidelines would assure that: a) treatment goals are detennined; b) all appropriate resources required to achieve the goals are identified; c) appropriate and competent health care personnel are made available; and d) a basis exists for the justification and documentation af needed support services and other longtenn considerations. Furthennore, standards of care would provide a general approach to diagnosis and management so that clinical profes sionals not familiar with care issues would have proper guidance. There is great debate that treatment guidelines.are necessary. There are concerns that treatment guidelines could become a euphomism for. "rationing health care". Some people feel once ethical and moral decision making is left to the legislative proct.~s v:a "trt. ... tment ~, lines", the very fabric of decision-making for the individual is lost. Others believe that they will be abused in the current litigation climate. *All members of the ACCP task force are contributors to this OTA Report. Guidelines are anticipated by early 1986.

PAGE 312

l OTA Task 6 Contract 533-4935.0 10/15/85 000509 14 -6) What aspects of mechanical ventilation and the issues it raises call for additional research? There are a number of areas in which research must be conducted: biomedical research concerning the conditions that make reliance on optimal mechanical ventilation necessary and appropriate, and those under which weaning is viable; successful weaning strategies, and the role of family and social support in this process; the relative advantages and disadvantages of medically, finan cially, and socially varying arrangements for the provision of care; the social impact on the patient and family of different institutional and conmunity arrangements for delivering health care; factors in the social infrastructure that seem to aid or to hinder successful home care; the impact on hospital staff. families, volunteers, or paid helpers of the task of caring for patients who often do not get well or whose health is likely to be seriously impaired despite good care; the meaning for patients. family, staff and others of the reliance on mechanical support; comparisons with data from situations involving renal dialysis or mechanical hearts. Since reliance is likely to grow, there is need to understand now the relationship that develops among patients and others and mechanical equipment. study of the impact of previous counselling and the use of role models by consumers; the development of simple, more reliable, easy to maintain, and less expensive home ventilators; and

PAGE 313

. OTA Task 6 Contract 533-4935.0 0/15/85 -15 000510 research on outcomes of long tem care. Although there have been some long-te!'III studies of mortality after discharge from ICU's, there are few describing long-term functioning following di~charge on mechanical ventilation. Studies on survival are medically oriented, and they do not consider quality of life issues. for the person nor his/her family. Few studies of survival compare persons on mechanical ventilation1w1th patients with similar degrees of impairment not on mechanical ventilation. Experience suggests that basic incidence and prevalence data are not even available on this population. In this regard, evaluation of other developed nation's programs would be useful ( 7) What is the potential for reducing the rates of lung disease and other ( conditions leading to ventilatory insufficiency and failure in elderly persons? What potential problems can be prevented? There are at least two approaches to these questions depending on the scope of J,reventative means that could be irr :1,er.:"d. If the scope of this study is limited to chronic ventilator-dependent persons, then prevention should be aimed at minimizing reinstftutfonal tzation. In order to prevent readmitting people to the hospital on a recurring basts, it ts suggested that a system of monitoring care fn the COIIIIIUn1ty be established. Such monitoring would include not only the operation of the equipment, but also the person's condition, and the home situation 1n which the person lives. Any change in one of those three areas may result in the need for readmission of such a person to a

PAGE 314

( OTA Task 6 Contract 533-4935.0 10/15/85 -16 -000511 tertiary care institution. On the other hand, if a proper monitoring system were fn place, then the justification for a support service would be identified in an objective and timely fashion, and care could be coordinated, quJlfty-assurance guaranteed, resulting in significant cost-savings as has been demonstrated in France (Task 5). If prevention is applied 9enerally, then environmental issues like air quality become important. Any means that lowers the incidence of lung disease could be called preventive. Accidents account for spinal cord injuries that leave persons in need of ventilation assistance, so safety become another preventive issue. Many diseases such as A.I.D.S. or polio will create the need for mechanical ventilation. Primary pre-. vention of disease must be fully implemented. The World Health Organi-zation notes the additionof 500,000 post-polio individuals to the world population every year; inmunfzation becomes a preventive means. There fs a large population of Latin Americans in the United States which nev~~ has receiv~a proper in111unization. Primary and secondary prevention are critical, and should not just be a response to acute intervention. Good health and nutrition will become even mre important as a preventive means because, in the next 50 years, it is estimated that the number of Americans 65 and over will more than double. The census bureau projects that this population will reach 65.9 million by the mid-2030's. Even with medical advances, a segment of the elderly population, especially those over 851 will have disabling diseases. Today about two out of three of all people with disa-.jJI

PAGE 315

( Contract 533-4935.0 -17 -bilities are elderly. Among these elderly are increasing numbers of people who will need to add ventilation to their lives. 8) What particular issues and problems should be priorities for public attention? 000512 This basic issue raised is one which society can solve by indicating strongly its desires relative to the allocation of resources. For instance, is it sensible that an industrial nation should allocate only lOS of its gross national product to health and human services? Is it sensible to ration health care to the elderly and chronically-ill? Is it appropriate n~t to reimburse hospitals for their expenses in caring for these persons? Society must decide the answers and deliver their answer~ to the responsible legislative bodies, who bear the ultimate responsibility to transfonn society's wishes into law. It appears that the present legislation is not understood by the vast majority of Medicare/Medicaid recipients. Major initiatives must be taken to create an infonned public opinion (Task 4). The public must understand that the Medicare system, as it is administered today, is by and large inefficient for both assuring quality of care and cost-savings. In order for the reimbursement system to survive the future, it must undergo a transformation. Revisions should include, but not be limited to, an examination of all current benefits along with cost-identification and detennination of outcomes. The public should also know the need for the creation of new benefits and the review of current eligibility requirements so that with new medical

PAGE 316

( ( Iii. OTA Task 6 Contract 533-4935.0 10/15/85 -18 000513 advances app.ropriate care will be given in the appropriate environment. As it stands today, there is a great incentive for patients to be admitted to a hospital in order to receive their benefits when it might be possible for those patients to avoid hospitalization. The .ventilator-assisted person represents more than a complex medical issue; their situation ~nvolves social problems whose solution will have major impact on health care and social policy. Thus, public attention should be directed to awareness of the needs of this patient population. Funding issues are a priority. Alternatives to hospital intensive care units should be found. Options should be available to this population: hospitals vs. home, extended care facilities, stepdown units, and rehabilitation and transitional care facilities. Regional care centers should be developed with expertise in dealing with this population. C011111Unity alternatives to home must be considered: congregate housing, respite care, and medical foster care. Issues of quality of life on the ventilator as opposed to weaning at all costs .should be addressed. The capabilities and productivity of an individual that is ventilator-assisted should be truthfully presented and erroneous sterotypes linking aging and death should be changed. Whenever lifesupport systems are involved, there will be need to encourage public discussion as to the circumstances under which society will support the allocation of resources for persons who will not recover, or under which there will be pressure to end the use of this equipment.* Editorial C011111ent: Town Hall" meetings such as California Health bec1s1ons Involving Citizens in Health Care Choices (Sister Corrine Bayley, CSJ) will be good models for other cOR111Unities to follow (Task 4). 3/j

PAGE 317

( OTA Task 6 Contract 533-4935.0 lo, 15/ 85 0 0 0 514 19 -Finally, public attention should focus on establishing a long-term ca~,.e system. This type of system is essential for quality of life to indi viduals who are disabled and/or elderly. Substantial savings in acute care costs could be realized by such system which could provide mechanical ventilation in a more timely and appropriate manner. 9) What existing problems may be amenable to public policy change? At the present time, given the low incidence and the low profile of the related problems, it is likely that all issues are amenable to change. Those most amenable for public policy change are suggested: 1) The ventilator-dependent consumer must function as a member of the team that detennines care. He/she should have access to peer counseling and role model direction. Programs could be established 1 ile the ~,;terns developp,i ~1lr polio at Rancho los Amigos a1.. Goldwater. 2) The current system of reimbursement should be adapted as ft applies to the chronically-ill, ventilator-dependent patient. A DRG exception should be provided to centers of expertise that have a proven track record of care given in a cost-efficient manner. Payments should include a variance for severity of illness; this currently does not exist. 3) A legal standing for the v1ng will" or similar initiative should receive national affirmation.

PAGE 318

OTA Task 6 Contract 533-4935.0 10/15/850 0 0515 -20 -4) A person should not have to be hospitalized in order to receive a benefit. but should only have to document needs. In this way, a ventilator could be used before an acute crisis and in a cost saving setting. 5) Hospitals should be adequately compensated for their cost to provide care for each patient, provided they maintain proper accountability. 6) Adequate payments should be provided for home care support per sonnel, particularly respiratory therapists, nurses, and personal care assistants who are required by ventilator-assisted persons at home. 7) There should be better provision of care for the chronic, ventila tor-dependent patient, similar to the hospice program currently ( allowable under Medicare payment systems. 8) Education and training of doctors, staff, family, and consumers, and other concerned persons in the use of technology and philosophy of independent living should be made available. This would be possible by establishing and stren~t~ening of Indepe"dent Livir1g Centers patterned after the Center for Independent Living, Berkeley, California; creating designated centers of expertise like at Goldwater and Bethesda Lutheran Medical Center; and creating documentation resource centers such as those operating in France. 9) A systems approach is necessary to coordinate all the available re sources from the private., public, voluntary, and governmental sec tors. The issues are too complex and the involved organizations too numerous to expect the spontaneous resolution of problems discussed in this report. Needs that can be addressed by such a system in-

PAGE 319

.. OTA Task 6 Contract 533-4935.0 -21 elude overa 11 care-monitoring outcome-detennination, qua 1i ty assurance, and cost-accountabi,ity. 000516 10) The need for public awareness and research to resolve unanswered questions raised in this report requires a designated body which should include professionals, consumers, and involved groups who are knowledgeable about the issues. Such a body could be responsible for detennining priorities, encouraging demonstrations, and evaluating research inititatives. 10) What are some of the public policy options? 1) The first option is to leave the system as it is. Let the issues percolate until they become a higher priority ("the ostrich approach"). 2) The second option is to leave the system as is, but add flexibility in reimbursement, more consumer involvement, and resolve ORG issues ("patch it"). 3) Tht. third ~~i'ln ir tC'I i aiate anc lt1c.1uate demonst ui. vu pruJ~cts that gradually affect and incremently c~ange the system to provide a more cost-effective continuum of services ("change it"). 4) A fourth option is to create a system providing a continuum of services that would deal with the issues of ventilator use in terms of long-term care as opposed to the present model of acute care (fix it"). 5) A final option would be a "Right to Breath" Law. Such a law would \ provide a c0111prehens1ve system for the ventilator-assisted indi vidual ("legislate it).

PAGE 320

( OTA Task 6 10/15/85 Contract 533.4935.0. -22 Q O 0517 REFERENCES 1. "The AART makes the 6 o'clock news." AART Times, 81 4, 28-311 1984. 2. Auchfncloss, J.H. and Gilbert, R. "Mechanical aid to ventilation in the home: use of-volume limited ventilator and leaking connections." Am. Rev. Resp. Dis., 108, 373-375, 1973. 3. Champion, E.W., Mulley, A.G., Goldstein, R.L., Barnett, 0., Thibault, G.E., .'~Me~ical intensive care for the elderly. 11 JAMA, 246, 18, 2052-2056, 1981. 4. Davis, H., Lefrak, S.S., Miller, D., Malt, S. "Prolonged mechanically assisted ventilation. JAMA, 243, 43-45, 1980. 5. Fischer, D.A. and Prentic, W.S., feasibility of home care for certain respiratory-dependent restrictive or obstructive lung disease patients." Chest; 82, 6, 739-743, 1982. 6. George, R.B., Baker, J.P., Constantine, H.P., Kanner, R.E., "Home use of equipment for patients with respiratory disease Arn. Rev. Resp. Dis., 115 (Suppl), 893-895, 1977. 7. "Health Car_. fo thl\ E,der~ .. "" in Final Re; ... :~ .. r. ~r.t-~981 Wn1te House Conference on Aging. Vol 1, 68-95, 1982. 8. Kopacz, M.A. and Moriarty-Wright, R., "Multidisciplinary approach for the patient on a home ventilator." Heart and Lung, 13, 3, 255-261, 1984. 9. Moser, K.M., Shibel, E.M., Beamon, A.J., "Acute respiratory failure in obstructive lung disease. Long-term survival after treatment in an in tensive care unit." JAMA, 225, 7, 705-707, 1973. 10. Sukumalchantra, Y., Dinakara, P., and Williams, M. "Prognosis of patients with chronic obstructive pulmonary disease after hospitalization for acutve ventilatory failure: a three year follow-up study." Am. Rev. Resp. Dis., 93, 215-222, 1966. 317


xml version 1.0 encoding UTF-8
REPORT xmlns http:www.fcla.edudlsmddaitss xmlns:xsi http:www.w3.org2001XMLSchema-instance xsi:schemaLocation http:www.fcla.edudlsmddaitssdaitssReport.xsd
INGEST IEID E6ZK78TR5_X6XY8X INGEST_TIME 2017-06-01T19:27:21Z PACKAGE AA00055600_00006
AGREEMENT_INFO ACCOUNT UF PROJECT UFDC
FILES