Citation
Renal dialysis decisionmaking

Material Information

Title:
Renal dialysis decisionmaking
Creator:
Freeman, Richard B.
Publisher:
U.S. Congress. Office of Technology Assessment
Publication Date:
Language:
English
Physical Description:
35 pages.

Subjects

Subjects / Keywords:
Hemodialysis -- New York (State) -- Rochestermetropolitan Area -- Decision making ( LCSH )
Kidneys -- Diseases -- Treatment -- New York (State) -- Rochester metropolitan Area -- Decision making ( LCSH )
Life support systems (Critical care) -- New York (State) -- Rochester metropolitan Area -- Decision making ( LCSH )
Genre:
federal government publication ( marcgt )

Notes

General Note:
This report summarizes the general policies of acceptance of patients for treatment. Decision to initiate treatment with dialysis are made by review committees in each of six institutions that provide dialysis treatments.

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/renal ( sudocs )

Aggregation Information

IUF:
University of Florida
OTA:
Office of Technology Assessment

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PAGE 1

RENAL DIALYSIS DECISIOtl4AKING Richard B. Freean, M.D. Professor of Medicine/Head, Nephrology Unit University of Rochester Medical Center Rochester, New York 14641 March 1, 1986 The history of d1alysis therapy for kidney failure and the evolution of kidney transplantation have been described by other authors (R. Rettig, Drukker, Parsons and Maher.). Thf s ana 1ys1 s focuses on one of the more difficult aspects of the use of artiff cfal life-support systems,: the decision to discontinue therapy. The data presented is from the University of Rochester Medical C~nter for the calendar years 1983 a,nd 1984. The analysis includes all patients treated during these two years. A foral regional prograa for the treatment of end stage renal disease (ESRD) patients was established in 1967 in the Rochester tropolftan area. Thfs region has a population of approximately 1.2 ai111on people, is comprised of nine counties including Monroe (Rochester) and extends south to the Pennsylvania border. This area is representative of the coaposftion of the population of the United States in that there 1s a major urban population, relatively affluent suburban counftfes, rural and wilderness areas. Reports on the incidence of ESRD patients and projections have been published previously by-this author (Freen, 1975) and colleagues (Cestero, Jacobs, Freen, 1980).

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-2000651 Dec1 sfons to initiate treatment with dialysis are made by review c0111111ttees in each of six institutions that provide dialysis treatments. The nine county prograa fs coordinated through a larger Dialysis and Transplant C011111ttee established fn 1967. Thfs group* ets weekly or bimonthly to review candidates for transplantation, update treatment protocols and establish general policies. Adainistrative, procedural ethical and social issues are discussed fn an open forum. In the early years, the group dealt more with dical acceptability for treatment of individual cases. Since the mfd 1970s, the group's attention has turned toward formal policy protocols and the review of cases in which questions of discontinuation of dialysis therapy are raised. A subconnittee studied eth:f cal probleas inherent in consideration for tenninatfon of treatment for more than a year, 1975 to 1976. The general outc0111e of the subcofttee's report emphasized the patients freed011 of choice. legal counsel had major input fnto'the subcomittee report and has been sought by the entire group on a continuing basis. *Of sctp11nes represented on the Dialysis and Transplant Coittee include the nephrologfst director of each dialysis unit and the director of the dfcal and surgical transplant programs, the organ preservation teaa, urology. psychiatry, nursing, tissue typing laboratory. social service, dietary, hospital adlllfn1stratfon and the clergy. Meetings are open to any responsible dfcal professional and patients.

PAGE 3

-3000652 '. To suaaarize the general policies of,acceptance of patients for treatment, every individual who presents with kidney failure receives the right to treatment and to choose the type of treatment they desire. No patient fs denied therapy. The individual hospital cottees and the interdisciplinary c01111ittee Y conclude that dialysis treataent Y not be in the best interest of a patient as it may result in a prolongation of the dying process. However, f"f the patient chooses not to accept the recomendation of the committee and is competent. the patient is accepted and every available resource is utilized for treatment without prejudice. All 110dalities of the~rapy are offered and, henceforth, for purposes of -.,.this repor~t, they wfll be referred to simply as dialysis or tra_nsplantatfon. There has never been a discussion or a judgment about the social worth of a patient. All patients under consideration for a renal transplant undergo a lengthy evaluation and are screened for medical, surgical, urologic, social problems and anesthesia risks under a defined protocol. The key llbers of the Dialysis and Transplant C0111111ttee that evaluate potential transplant recipients are a nephrologfst, a vascular transplant surgeon, a urologic surgeon, a psychiatrist and a social worker. The principles of access to therapy and freedom of choice in our comunfty are consonant with the judgnts of the Supreme Court that established the penumbra of the right to privacy and self-determination under Coaon and Constitutional Law (Rowe vs Wade); the President's Cofssion for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research (hereafter

PAGE 4

-4000653 known as the President's C011111iss1on) and the opinions of most ethicists that support equal access to care and freedom of choice. ,Dectstons to discontinue treataent are not so straightforward. The objective of the patient care tea is to address those dffffcult problems in e tlle context of aedfcal data and social, legal and ethical ten&Ks. No single physician or dical professional can render this decision. There must be COIIIOn agreent between three qualified physicians and the patient, if coapetent, or the legal next of kin in patients who are not competent. DEFINITION OF TERMS Loss of function of the kidneys to a level that ts fncoapatible with life will be referred to as renal failure. Medt~1 textbooks separate renal failure into two categories: acute renal failure and chronic renal failure. Acute renal failure ts defined as sudden loss of function caused by several hundred diseases, toxins, changes in blood circulation and obstruction to urine flow. Many of these patients Y regain natural function of the kidney tf they can be supported by the artiffcfal kidney and close medical nagent. Others dte froa the underlying disorder that caused kidney failure. Solle never regain function but can be fntafned by the artificial kidney for an indeftnfte period. These patients are desperately 111 in the early phases of loss of function because the underlying insult to the kidney also affects other organ systeas. Chronic renal failure is irreversible loss of kidney function froa a large

PAGE 5

-5-000654 variety of known and unknown causes. Natural kidney function will not return in these cases. These patients have end stage renal disease (ESRD) and decisions to fnitfate therapy are de before the patient is in danger of dying. These patients are eligible for Medicare benefits after dialysis treatments have ztarted or when they receive a transplant. Discontinuation of treatllent of patients on long-tera dialysis fn this category was analyzed by Neu and Kjellstrand (NE.14 1986; 314:14-19). This fs a valuable publication but does not address decisfonmaking in patients with acute renal failure. These textbook definitions are useful only after a diagnosis of the basic disorder has been de. Dicisfonmakfng would be 1DOre rational and efffcfent tt the cause of kidney failure were known before dialysis therapy ,a1st be fnftfated. In the real world, individual patients often present with life threatening consequences of kidney failure turemia), and ergency dialysis treatments aust be started before a deffnfte dfagnosfs is established. For thfs reason. new patients have been divided into two groups according to the nner in which they pres~nt for diagnosis and treatment: those with sudden renal failure and those with known chronic irreversible renal failure. Sudden renal failure indicates the urgency and pricy for treatment before a diagnosis of the underlying cause fs de. Sudden renal failure fs further dfvfded fnto those cases that follow major surgical procedures and those due to dfcal conditions to detennfne outcome and costs. Most studies about decisfonkfng focus on patients wfth chronic irreversible disease (ESRD)~ This analysis is meant to be comprehensive and includes those patients who are first seen fn an emergency situation and require dialysis treatment

PAGE 6

-6-00065~ .. before a deffnftive diagnosis fs established. The importance of including these patients 1s: 1) There is the possibility of recovery of natural kidney function; and, 2) It is the group in whoa the largest percentage of patients eventually have a decision de to discontinue treatment. All of the 228 patients are divided into the following six groups: 1) Sudden renal failure following surgery for catastrophic vascular accidents, COllll)lex ajor procedures on the heart that utfltze cardio-pulmonary bypass, and operations on two or more Jor organ systems. 2) Kidney failure that occurred suddenly or was not previously known to exfst. These are emergency cases that require f1111edfate treatment because they are in danger of dying' t'rom retained toxins, fluid overload or chemical imbalance. 3) New patients wfth known kidney disorders that progressed to end stage renal disease in 1983-84. These patients were known to have irreversible chron;c renal disease, progressive in nature, and were started on dialysis therapy 1n 1983 or 1984. 4) Patients on intenance dfalysf s treatment transferred fr011 other facilities because of c011plfcatfons. intePcurrent illnesses or incidential surgical procedures. These patients were on dialysis for 110nths to years prior to the admission for intercurrent probleas. 5) Patients who received a kidney transplant before the two year study ;:..-

PAGE 7

-7, 0 0 0 65 6 period, had adequate na tura 1 function of the transplant, but had progressive chronic rejection or recurrence of their original disease. These patients returned to intenance dialysis treatments in 1983-84 to waft for another transplant or to reafn on dialysis depending on their preference and their dfcal condition. 6). Patients who received a new kidney transplant during the two year study period. ANALYSIS OF PATIENT. DATA Data on all patients who received dialysis therapy or who hid a renal transplant, during the calendar years 1983 and 1984, were retrieved froa the University of Rochester Computer Center by a'n IBM 4381 Coaputer in an MYS environnt using SAS software. The information used irti this analysis f s listed 1n Table I and co-morbid condftfons in Table II. The diagnoses, hospital course and discussions of decisfons wre crosschecked by review of written records of weekly care rounds, afnutes of the fnterdiscfplfnary Dfalysfs and Transplant Cofttee, operating rooa records, foral patient hospital records and other sources. Ff seal data are true charges, not costs. Diagnosis Related Group (DRG) classification fs the prfncfpal dfagnosfs at discharge, not adllfssion. RESULTS Two hundred and forty-four patients had 562 admissions for dialysis or transplant fn the two year study period. Complete data is not available fn 10

PAGE 8

-8-000657 .. patients, 6 patients had 10 adaissions for drug overdoses. received treatment by heaoperfusion and are excluded fro this analysts. The final population consists of 228 patients who had 537 adaissions. The. characteristics of patient groups are sunnarfzed fn Table III. No st.atistical analysis of differences between groups 1s presented because this study is not prospective, no control groups were utilized for age, sex, race. co-morbid conditions orotner varfables.o The true base population characteristics for co-.orbid events and ~ospftalfzation data are beyond the scope of a study of thf s type. Further, the groups are not cOlll)lrable because the purpose of the study 1, decf sionkfng fn indfvidua 1 patfen_ts who present~fn a unfque nner. Finally, therapy was rendered with dfffere~t goals for each patient group and, therefore, the groups are not strf~tly comparable. ,, A nUllber of known observations are confirmed by the data fn Table III. First, the incidence of renal failure fn blacks fs very high.* Second, the nUllber of diabetics fn the irreversible renal failure groups accounts for approxitely 1/3 of the total patients. This f s in contrast to patients that present with sud~en renal failure where the percentage of blacks and diabetics are closer to that of the general population. *The percentage of blacks in Monroe County (Rochester) is 10.11 and of the nine county region 6.81 or 81,264 of 1.2 million. (Data from the 1980 census supplied by the Center for Government Research, Inc.).

PAGE 9

-9-. 000658 '\ Other findings are not surprising. The proponderence of males in the post-surgical sudden" renal failure group reflects the higher incidence of vascular disease of the coronary arteries and the large vessels that lead to catastrophic events (111,Yocardial infarction, ruptured abdominal aortic aneurysm, bypass procedures, v~scular gra.fts, etc.). More fe les on intanence heaodfalysis we~e transferred in for fntercurrent illnesses cOlll)lred to the number of les. Seven of the 19 feles required surgery for metabolic bone disease. This is a common complication in patients on long-term dialysis therapy, but aore severe in feles. Younger patients recejved transplants because vascular disease in the elderly exclude consideration for transplantation. The number ~f co-aorbfd conditions is less in the transplants but there is a high percentage that are diabetic. f The large diabetic population in the established chronic renal failure and transplant groups ay give a false fapressfon that more younger patients receive dialysis and transplant treatments. Early onset diabetes (juvenile diabetes) occurs early in life and c011plications occur in aidlffe. Renal failure is the ajor life threatening C011Plfcation in SOI of these patients. Thus, the incidence of diabetes moves the age scale toward younger persons, e.g. those below age 65. -~ The number of co-morbid conditions is roughly the same fn each group except the new transplants. This data 1s probably of little value except to de11011strate that virtually all patients have one or more disorders other than renal failure. In fact, only 4 of the 228 patients were free of Jor

PAGE 10

-1000065!) .. .. cOllll)lications of renal failure and diseases of other organs. It is the type and severity of the co-morbid condition that determines the outcome, not the nUllber. f"or exaaple, severe coronary artery disease is 110re serious than aneata or low back pain. Because the process of decisionking is the subject of thfs report, one observation fro Table III 1s emphasized. Forty-two percent (95 of 228) patients were not known to have renal disease by the medical staff or the referring physician when they ftrst appeared for diagnosis and treatllent. These patients with sudden renal failure were critically 111 and in danger of dy-ing fro chemical imbalance, fluid overload, or retained lethal toxins at the._ ... ... ti of presentation. In these individuals, the prfry diagno~fs bec01111s a secondary considera tfon and the i111111edfa te directive 1s to restore the cheat cal and flufd status of the patient to less danger-ous levels by fnitfatfon of dialysis. After one or more treataents, deffnf tfve studies are conducted to detennine the cause of renal failure and whether or not there 1s the potential for recovery of natural kidney function. If the new transplants are excluded from the total group, then 531 of all patients fall into the sudden renal failure group. If only patients started on dfalysfs therapy for the.first tf are considered, those with an uncertain outcOIII represent 691 (95 of 137) of all new patients treated at Strong Meaorfal Hospital (SMH)~ This fnstftution is the Hospital of the University of Rochester Medical Center and the Jor Tertiary Care Center in this area. It is possible that the percentage of new cases that are sudden" or acute renal failure is higher

PAGE 11

-11-thin aight be representative for the region. The exact nuaber of new ESRD cases started on dfa lysis in the nine county area in 1983-84 was 200.* Twelve of these ca fro the sudden renal failure group and 42 fr011 the new chronic renal failure group started on treatllent at SMH. The refnfng 83 cases of sudden renal failure regained natural function or died (Table IV). Not all sudden or acute renal failure cases occur or are referred to SMH so the figure of 83 cases with the potential to recover function, who will die of tbefr basic disease or jn whoa a decision aust be de to discontinue '--therapy is a afnfaua nuaber. The conclusion f s that at least 3()1 of all new patients started on dialysis therapy Y not have had a diagnosis established and the outco f s unknown at the outset. Data on patient outcoae (Table IV) conffnns this point. A decison to. withdraw treatment was agreed upon in 241 of the patients who presented with sudden renal failure (23 of 95), the largest portion in any of the patient categories. However~ just under 301 of patients with sudden renal failure had return of natural function and were eventually discharged fro the hospital without the need for support with the artificial kidney. Thirty-four percent dfed and 131 reafned on chronic dialysis. *There were 110 new ESRD cases started on dialysis in 1983 and 90 fn 1984. The incidence fs 92 and 75 cases per million population. The 1985 fncfdence was just over 100 cases per afllfon.

PAGE 12

-12"' 000661 Table IV 1s a su-ry of the outcome of the six groups. Tables V through IX su-rize subgroups according to age, sex, length of hospital stay for the procedure or occurrence of ~1dney failure or transplant, additional adaissions and hospital charges. Table X COIIIJlres mean hospit.al charges per patient for each of the subgroups and Table XI is a co111>uter printout of the DRG classificatfon of the patient admission analyzed in this study. Transplant candidates are encouraged to continue on dialysis if they have significant vascular, pulaonary or other disorders that Y jeopardize their life because of the side effects of continuous 111111Unosuppress1ve therapy. They are not excluded, however, ... if there is a reasonable chance of success. The higher risk is supported by the characteristics of the three deaths in the transplant group: all were diabetic and over 50 years of age ., Excluding the transplants, 691 of the patients were over 50 years of age and 351 were over 65. Other findings are evident fro the tables. Lengt~ of stay and hospital charges were highest for those wfth the aost serious flln~sses: those wfth "sudden renal failure following surgical and dical procedures., A deliberate decision to disc,;ntinue treatment de no difference fn the length of stay or hospital charges when the patients are c0111pared as groups. All data is available fr011 the tables or can be calculated from the fnfonation provided. In group 3, known patients with irreversible disease, three died and two discontinued treatment. The 121 aortalfty rate fs consonant with national figures and significantly lower than the "sudden" renal failure group. The three deaths on dialysis were due to non-renal complications that occurred

PAGE 13

-13OOOG62 after therapy was initiated. In two, therapy was withdrawn by comon agreeaent 43 and 57 days after the first dialysis. Fro the beginning of therapy, there was an understanding of the expectations by the patient. The ftrst patient, with irreversible disease in whoa treatllent was discontinued, was a 67-year-old feale with severe hypertension and coronary artery disease. There was an understanding at the begining that there would be a 4 week tria 1 of therapy and treatment would be discontinued if. in her view. she failed to have significant improvent of her angina and congestive heart failure. Unfortunately, there was no 1aprovent and treatllent was discontinued. The other patient, a 70-year-old w0111n, had obstruction of urint_ flaw froa a pelvic cancer. She was advised that chemotherapy -.s unlikely to cause regression of the tumor though her kidneys had been irreparably damaged. When the tl.lll>r failed to respond to treataedt; she requested that dialysis therapy be di scontinuect. She was judged to be nta 1 ly C0111Petent and her request was granted. Data on the other patient groups is contained tn the tables. DECISIONS TO BEGIN DIALYSIS As stated, all persons who are tn danger of dying because of the consequences of kidney failure of unknown cause received dialysis as discussed above. There are individuals wfth known progressive disease who chose not to have dialysis or are nevar referred for treatment. This fs not unco111110n but the exact nUllber is unknown.

PAGE 14

-14\.0 0 0663 DECISIOtt1AKING Thoughtful people are likely to agree that the multitude of variables crucial to decf sfon111king for patient care cannot be captured by a cool analysis of statistics of patient outcoaes, costs, co-110rbfd conditions, fear of lftfgation and societal pressures. The dra of each fndfvfdual life cycle fs a dynaaic course of known and unknown variations inthe essence of being. The ebb and surge of courage and fear, satisfaction and conteapt, arrogance and h111111ity occur fn everyone. These conscious emotions are not reflected fn the tables. The nature of huans 1s singular. ~A n of sound afnd, 77 years old, has known for ny years that hfs .~ kidney disease fs progressing toward death fro accU11Ulatfon of toxins. Hf s trust f n two physf cien, and the ze of the di ca 1 care systea caused him to follow a prograa of conservative asures that restricted hfs freedoa to enjoy retfrent. Conservative treatment i has prolonged his life for a year or aore free of artfficfal lffe-. support systems. Gradually, ha.ver, over the last year, he has begun to recite the early symptoms of kidney failure. Hts tolerance for exercise fs decreased and hfs ability to concentrate for prolonged periods of tf has deteriorated. He knows about artfffcfal devices that might prolong fs life. His wife and he have discussed whether or not he should have a trial of therapy. But he has accepted the natural course of his affliction and sfts side by side with his beloved companion of 50 or more years and states that he does not wf sh to have treatment. '.

PAGE 15

-15-000664 He appears content, but at times anxious. What will be the symptoll that heralds his deaise? He calls on occasion to inquire whether thfs or that fs the beginning of the end. Most of these symptolls are trfvfal but to the patient they do not seea so trivial until reassured. He 1~ not an eccentric nor 1s he psychologically disturbed fn any way. His kindly and soft demeanor is accepting. When told that the end will be soon, perhaps within aonths, the couple trust and waft. They grow closer. He his exerct sed_ hf s freedoa of cho1 ce. -~Mr. WK 1s a 49-year-old diabetic with progressive renal failure. He 1s legally blind fro diabetic re-etriopathy and can ake out shadows o~ly. He has severe degenerative disease of his peripheral nerves so that he has very little pafn or pressure sensation fn .his lower extreaftfes. Because of the loss of sensation, a chronic pressure ulcer developed on the heel of hfs left foot. The likelihood of healing thfs ulcer is marginal because of the poor circulation to both feet. He has had one ayocardfal infarction. Hf s appearance is that of a n 20 years older than his true chronologfc age. He ws adllftted to the Intensive Care Unit because of diabetic keto acfdosf s fn c0111. His blood sugar was controlled with repeated doses of fnsulfn and his fluid balance was gradually restored to nonnal. About 10 days after his com cleared, he was informed that his kidney function s 151 of norml and progression of his disease was almost

PAGE 16

-16.. certain. The patient. his wife and two sons were told the details of dialysis treataent. A fistula would have to be created; treatllent would be four hours three tis I week; wfde wr1atfons 1n his blood suga~ were lfkely; leg cramps and generalized fatigue would probably follow each treataent. The patient's wife and the sons toured the Dialysis Unit and the details of each procedure were explained to the. The sa de1:af1s were also described to the patient. The opinion of three physicians was that he was not a candidate for transplantation .because vascular disease would not allow connection--~ of blood vessels from a donor kidney to hfs own arterjosclerotfc vessels. ., Mr. K never wafvered froa hf s determfnatfon to live as any years or aonths as possible. His answer to the suggestion that treatlllent may prolong hts patn. that aaputatfon Y be necessary ff hfs foot ulcer beca infected, that he Y hive another heart attack or other vascular occlusions has been the sa11e: ooctor, ff I can have a few extra aonths or years with ay wffe and sons and enjoy the sound of IIIY grandchildren at play, I want dialysis. Hfs stately wife assures us that she will provide her husband wfth every detail of care. Each of hfs sons fnsf st they will alternate the responsfb111ty to bring hf to a center for ~falysfs. The patient and each aember of his faaily have been told again and again that dialysis will not cure or even improve his vascular

PAGE 17

-17000666 ... disease. But at the conclusion of each discussion, the faaily 1s certain to thank every mber of the health care tea and to reaind us in a quiet and respected nner that Mr. K wants to live and they w111 be aost grateful tf we will extend to hi treatllent for hf i kidney failure. Mr. K w111 be started as his fistula his been created and f s ready for use. What cannot be descrfl:>ed adequately ts the acceptance, trust, courage, love and gratitude of the patient and hts family. In 1975, the Cha1ran ... of the Dialysis and Transplant C011111fttee (the author) raised two issues for consideration of the Coaittee: "-&,,: 1. "Gfven the theoretic possib11ty tha, facfltties for dfalysts treatments ay be inadequate for all ESRD patients, how woulci the counity cope wtth the .situation fn teras of selection of patients for treatment? 2. What should be the proper and accepted process to discontinue treatment in those patients already started on dfa1ys1s therapy who sustained coaplicatfons that rendered the tnf1ra, dissattsfffed or fncoapetent ntally? A Subcaafttee s appointed to discuss these issues and other issues. The Chairan 111s the Cannon Reverend Nathanal llhttcollb, a distfnguished scholar of the Eptspfcol Church and Protestant Chaplain to Strong Memorial Hospital. The group also included Dr. Wtllfaa A. Greene, distinguished Professor of Medfcfne and Psychiatry, mber of the Medfcfne-Psychfatry Lfafson Group and of the original Gottschalk C01111ttee that was convened by the Bureau of the Budget

PAGE 18

000667 -18fn 1967 to consider the phenoaena of prolonged life-support with the artificial kidney. Other llbers of the c01111ittee included the Catholic Chaplain ~o the hospital, a practfctng nephrologist, a transplant surgeon, an anesthesiologist, 1 nurse, and a social worker. The Subcoai ttee addressed a coping process, which actually was a prospecting thocl of deterainfng how well patients fared on dfalysfs treatllent. The acceptance of patients fnto the Dialysis and Transplant Program his ver been a problea. As stated previously, all patients receive therapy under free choice unless the individual refuses dialysis and is judged to be C011Pttent and rational, or ... has de a clear statent when c011petent that they-~ do not wish to have therapy ff the -need arises and they are n~t C011Pttent~ The c01111fttee's draft report contains a discussion on the discontfnuatfon of treatment including rec01111endatfons froa legaT counsel. The full draft report is attached in the Appendix. The Subc011111ittee fdentified clearly the difference fn consideration of beginning therapy and the legal and aoral responsfbflfties of dical professionals after treatment had been started. The deliberation of the Subconafttee eaphasized what is standard of care fn the comunity. the gravity of the need for dfcal professionals to offer all available help and to honor t11e rational convictions of the right to control ones life with the concOllftant right to exercise that decfsfon. At that ti (1976), there were few legal or moral guidelines regarding dfscussfons to discontinue treataent.

PAGE 19

-19-.0 0 0668 In the ensuing 10 years, the approach has evolved into a verbal contract between dical professionals and patients, if coapetent, or the legal next of kfn tn tnc0111P9tent patients. This approach his been useful, particularly in patients wfth sudden renal failure, when the exact diagnosis and the possfblfty for recovery ofnatural renal function are not known at the ti of presentation. It is also of value in those chronic patients on dialysis treatments who sustain coaplications such as cerebral vascular accidents, progressive heart disease, or developed neoplasms after they have been on dfalysfs treataents for 11011ths or years. An agreent on a triJl period of intensive treatment allows the dical--~ professionals tf to establish as exact a diagnosis as possible and to adjust therapy to an optil level to allow xil rehab11itatfon. The trial period also allows the patient" and the faaily tfm 1td come to grips with the gravity of a decision to dfscontfnue treatment. The following are two examples of extremes encountered fn this approach. A 69-year-old widowed fele was started on maintenance hemodialysfs fn a hospital fn a distant city 6 months before transfer to Strong Meaorfal Hospital. She had a history of hypertension, adult onset diabetes, and hid had several myocardial infarctions. She had angfna at rest on adllission. She ved to Rochester to live with her rried daughter and to receive consultations fr011 cardfologfsts and nephrologists.

PAGE 20

-20-000669 .. ln1t1a11y, the patient was restricted to bed by the limitatfons of her ~rt disease as she beca short of breath and developed chest pain on the least exertion. After diagnostic studies, her dialysis treataents wre altered to adjust fluid vol1ae to atnfaize fluid overload of the heart and other adjustments were de f n her aeclf ca t1ons to faprove cardfac function. During the ftrst week, the cardfologfst. nephrologist. a1a lysf s nurses. socta 1 workers, and others df scu_ssed her persona 1, dical. and social situations with the patient, the daughter and son-fn law. llllen ft was evident \o all that the lfkelfhood of faprovent was nil, tht. concept of a trfal of xf .. therapy for a finite period ,as raised first wtth the daughter. the son-in-law. and then with the patient ., These interactions are delicate and sensitive. They are fnftfated on an fndfvtdual basts depending on the presentation of the patient and their situation. In thf s case, the approach to the patient began: Mrs. -ft fs d1fftcult to coae fnto a person's life for only a sll fraction of your 69 years and begin a conversation about your very serious conclftfon The patient accepted the concept of a tria 1 of intensive therapy wftll the understanding that a CC1111Plete re-evaluation of her entire status would be ade at the end of four weeks of intensive treatment. Nothing re satd for four weeks regarding the re-evaluation, except to answer the questions of the patient and the faaily and to explain why certain ad.1ustaents fn the treataent prograa were de. At the end of a full 110nth, the patient was still unable to 110ve out of

PAGE 21

-21-0 0 067 bed without severe chest pain and shortness of breath. The daughter's holle sftuatfon had been judged to be excellent, the son-in-law had expressed hts support of hf s wife to care for his aother-in-law in separate private conversations. Then, privately, the two volunteered jointly that the patient would be accepted with lovfng care fnto their hOIII. Subsequently, the patient was fnforaed that there was little hope for faprovent fn her condition by a i1ng1e physf c1an. Later fn the conversation. as planned, the patient and the physician were joined by the dlughter-tn-law and husband~ This was done to assure the patient that tht, daughter_ and son-in-law understood her prob lea and 111nted .her to co hOllle wtth thea. Eventually, the w0111n decided that she would be aore CGllfortable tn her daughter's hOIII for 'her last few weeks. The eaotfons of this dtscussfon were intense and when it was over, there were tears on everyones cheeks. She died 19 days after df schlrge f n the daughter's hoae. At the other end of the spectrua, sharing and trust are not easily a CCCJIIP 11 shed~ A widowed fele, age 66, hid been on fntenance dfalysfs for 8 years. In 1978, she suffered a cerebral vascular accident with left hemiparesfs. In 1983, she sustained a rfght-stded paralysis leaving the wean unable to coaunfcate or to perform the 110st simple task.

PAGE 22

-22' 000671 ~-. Her heart was unstable requiring aonitors and other resources ava1 lable only on the Medical Intensive Care Unit. The nephrologist who had referred the patient to Strong Memorial Hospital after the second vascular accident, had trted to bring the four sons together to discuss further treatment a~ hid contacted legal and state authorfties regarding the possfbi11ty of discontinuing treataent without consent of the four sons. These efforts were continued after the second cerebral vascular accident when the patient was adllitted to Strong Meaorial Hospital. Three of the sons reined adant that every possible treataent should be continued for their aother. TIie dical professionals hid all agreed that the outlook ,for recovery to a aeaningful existence was hopeless. .; Without consent of the legal next of kfn, however, no one believed that they hid the ethical or legal right to discontinue treatment. The WQlllln refned hospftaltzed for a total of 69 days, aostly on the Intensive care Unit and finally dfed of overwhelatng sepsfs. Dialysis therapy was continued to the very last day before death. In 67 other oases fn this study that died, there was a distinct different scenario for each fndividual case. Unlike the report of Neu and Kjellstrand, there is no fdentffiable dectsfo111111ker about df scontfnua tion of treatment unless it ws the patient. Even then, there were frequent reversals of decisions once de with firm convfctfon. The cases listed as dialysis dfscontfnued are largely those who were incOlll)etent or a few who newer waivered fro their decision to have treatllent discontinued. There are only two axioas

PAGE 23

-23-000672 that apply to all of the cases in this analysis: 1) The patient was allowed freedoa of choice or fn the case of patients ntally incOlll)etent, docaaentatfon 'that the patient would have exercised a choice to continue or dfscontfnue therapy was required before a decision was reached by the health care tea to continue or dfscontfnue treataent. 2) In any patient where there was even the slightest hint of 11tfgat1on, every possible aeasure to treat the patient was followed despite personal or collective convictions by the dical professionals that treatment was not appropriate. Thus~ decisiollllllking has evolved from the aore paternalistic and authoritarian tone of the report of the Subcoafttee of 1976 to one of freedoa'-7 of self-deterafnation by the patient. And, as dical 1fab11f~ has becoae aore costly and threa tenfng, the hea 1th care tea11 increases efforts to avoid litigation, regardless of cost, despite the -nfcognitfon that cost containnt is a responsib11 i ty of a 11 concerned. In the face of these conflicting pressures, there are any cases in which patients and faailies have had positive benefits that defy quantitation. A 70-year-old executive was started on regular dialysis therapy for ESRD due to hypertensive kidney disease (nephrosclerosis) in 1978. This courageous n traveled extensively through Europe and the Unfted States, continued to nage his business and was active socially for four and a half years. His last six aonths were difficult because of the progression of bone disease and heart failure. However, during the five years on dialysis treatment, he trained his son to nage the fallily business, earned the respect and love of hf s son and left his fina and its eaployees

PAGE 24

-24' 00067:J .. 1n its aost positive and financially secure position fn its history. A 62-yar-old n had a kidney reaoved in 1977 beca_use of a alignant taaor 11af ted to that sfngle kidney. It ts not uncOIIIOn that thfs type of t&llor recurs tn the other kidney, and a second tuaor appeared fn the reafnfng kidney in 1983. This kidney s resected successfully wfth the patient on dialysis therapy, and he reafns fn relatively good health to this date. A 13-year-old was known to have nephritis for two years which caused assive loss o ... f protein in hf s urfne and modest loss of kidney function. He s transferred to the Pediatric Intensive C.re Unit with ssive fluid retention that restricted his abflity to breathe, decreased his.cardiac output and caused rents fn-tlie skfn of hfs extrea1ties and trunk with weaping fluid. Both eyes were closed because of the fluid collected in the subcutaneous tissue in hfs face. He s started on dfalysfs to reaove fluid but wfth a full recognition that his rginal ktdney function would fafl COIIPlttely as ft alaost always does when dfalysts is fnftfated. This was a purposeful decision since the object was to prevent loss of protein in the urine whfch would directly faprove the severe state of fluid retention. After 1111ltfple dialyses, surgical procedures to drain flufd and several episodes of infection, he was discharged after six weeks on a regular dfalysfs prograa. Sfx months later, he began to produce sll aaounts of urfne that were relatively free of protein. He gradually increased hfs urine output eventually reaching 40S of nonnal function without the need for dfalysfs. Nhy he recovered function spontaneously 1 s not known but he ts well today and i:-,-

PAGE 25

-25\000674 leads a relatively noraal lffe. Although the latter case -1s unusual, ft is by no ans rare. In addition to this case, four others with known rel disease of uncertain cause had kfdmy failure that at tfs required treatllent with the artfficfal kidney over the two year study period. In these patients, the actfvf ty of their kidney disease xed and waned allowing periods of 110nths off of dialysis but having to return when the function declined. These cases resemble kf dney transplants tllllt undergo epfsod,s of rejection that ay or Y not be reversible wfth antf rejectfon therapy~ The difference f s that the cause of these priry chronic d1 seases of the kf drieys 1 s. unknown. and the chant sas whereby na tura 1 functi oa returns has not yet been identif1ed. Types of cases are cat.egorfzed below. 'Ttiis organization of groups fs -nt to illustrate some. but not all, of the variables in decfsfonkfng. It 1s done at the risk of giving an 1apression that each case f s not 1ndf vfdua 1 fzed. 1) Therapy 1s df scontinued after a trial period under verbal contract wfth the patient, ff competent, or the next of kfn ff the patient 1 s nta 1 ly i ncoapetent. 2) Patients Y undergo an unexpected faprovent fn function such as illustrated by the last case described above. 3) Patients Y have unexpected beneff ts that are never known to the dfcal care team that relate to the posftfve effect on the faaf ly,

PAGE 26

-26-0 O'tt 67 5 t11Ployees or other friends. 4) Dialysis allows new benefits to patients such as the reaoval of both kidneys for tuaors that usually appear only tn the kidneys and eventually will tastasize. 5) Patient equivocation occurs frequently where the wfll to live and the desire to give up constantly change kfng a clear plan for re-evaluatfoi1 dffff cult. 6) Phystcfan equivocation occurs in soae cases. Here, a referring ~-physfcfan Y not allow the dtcal tea to _enter fn~ a contract wfth a patient or Y fail to allow a do not resuscft.ate order fn the 1>1tfent1s chart. f 7) Patients Y not be able to coae to grips wf th a dectsfon regarding df scontfnuation of therapy or the family Y equivocate as described f n one case exaaple above. In these cases. dfa 1ys1s f s continued tndeffnftely. 8) Patfents Y hive unrealf stfc expectations of the results of treatlllnt, becoae depressed, do not ke full efforts to becOllle rehllbtlft.ated and continue on treatment without sfgntff cant 11111)rovent. 9) Patients Y be unable to cope wfth COIIP11catfons, have a downhill course and dte.

PAGE 27

-27.-~ 0 0 0 676 (10) Yery difficult patients have unreasonable dends that continue to annoy the health professionals and at t1s disrupt opt1 care. The aost dffffcult examples are transplant recipients who discontinue their faunosuppressfve.drugs after years of a successful functioning transplat. They becaae convinced that there fs no need for continuation of anti-rejection therapy. Obviously, the kidney rejects and the patfflt returns to dialysis. (11) Soae pa tfents are 1 n uncharted territory. and the outc0111 of the disease fs unknown to professionals. We sfaply know too little about too any disorders. As wfth any s .... ry. there are areas that probably require expansion or where thire 1s signiffcant overlap. ~. THE REALITY OF DIALYSIS TREATMENT Throughout this report. the concept that each fndfvfdual fs unique has been eaphasfzed. Categorfzatfon of patients or of df cal professionals fs fraught wfth probleas of an fnffnfte nUlllber of variables. On the other hand, the analysts of cases as fndfvfduals without statfstfcal scrutiny leaves any report open to valfd crftfcfsas. Thfs report could be crftfcfzed as a series of anecdotes of a thod of personalized delivery of care. Illustrative of probleas fn decfsfonkfng by case vignettes emphasizes uncertafntfes of bfologf c events and adaptation to treatment. The tndftfonal approach ts to organize patf ents fnto groups accordf ng to the nner fn whf ch

PAGE 28

-28-000677 they present and by their outcoae. This results fn depersonalf zatfon of a report. In accord wtth the opfn1on of others. the value of anecdotes fs very useful to supplent an organized analysts (see President's C01111fssfon, specfffcally, Moran's objection to the value of anecdotes. paga 8; and C01111ssfona1 Valentine, page 201, volu 1). Though an atteapt has been de to utilize the categorization approach, ft has been supplemented wfth anecdotal presentations to 111uttrate the personalization of treatment. As Cassels (NE-14 1982; 306:639-645) points out. each person has dfnsfons beyond values and beltefs: each person has hfs own personality tnft and behavior pattern wtth ..= whtch they Mddress an illness; a person has a past, rtes and skills leirned. without which they are inc011plete; life experiences, particularly of previous illnesses bear on their perception.of dfcfne as a science or an art; their fafly f s a part of their person; cultural background dictates their attitudes to a host of variables; the individual has roles taportant to hf or her and has a particular way of relating to others. Each person 1s political, creative. ignorant of new changes fn thefr envfronnt and has certain creative behavior patterns~ Each patient has a strong fge of thefr own body and the fear of how ft ay be altered by illness. Each fndfvfdual has fant.asfes that are shared with no one and has a perceived future fn which hope dwells. Each person his a transcendent d1ns1on, a lffe of the spirit which Y or Y not be re11g1ous or ayst1ca1. A second reality that has been eaphasfzed fn thf s report 1s the df fference 1n dfscontinufng treataent in patients in whoa dfalysfs has already been started COIIPlred to the patient not yet treated. At least two features of this

PAGE 29

-29d11e .. deserve co-nt. P,, 000678 First, there 1~ the uncertainty of the outcome. There are publications pertaining to uncertainty by medical professionals and their failure to relate thfs uncertai-nty to patients (Fox, DrllallOlld). There is only one certain fact and that 1s that someday we will all die. Otherwise, there are no absolutes 1n tile responsible practice of d1cfne. One speaks 1n terms of percentages: that there 1 s a 951 chance that a 11 ve-re lated donor transplant w111 be functioning at the end of one year or that the aortalfty rate of all patients started on dfalysfs 1-i. 151 per year. However, for the individual with a given illness, there are no guarantees and ft fs the foolish person who speaks fn teras of no risks or no hope. Those that develop criteria to predf ct an outcoae of lOOI aust be viewed wf th extreae caution. For exa11ple, two recent publications emphasized age as a Jor variable that predicts a poor outcome (RoS11Usseb, et al: Arch Intern Med 1985; 14&:2015-2018, and Lien and Chan: Arch Intern Med 1985: 145:2067-2069). There are 10 examples of contndf ctfons to predictive factors of inevitable death tn this report alone. Unexplained deviations froa the expected outco occur everyday fn every institution in ~he world and countles~ tfs fn the career of a busy practitioner. Presentation of percentages is of some benefit to the individual patient to assist fn reaching a decision but for that person the percentage of success or failure will be O or 1001. The events that have to do wfth the course of nature are always uncertain despite the highest level of expertise of medica 1 professionals. The greater the lack of scientific knowledge, the aore likely 1s the uncertainty. Finally, knowledge need not necessarily be hf dden from a patient, but 1 t may be 1apossfble to C0111111Unicate with certain individuals since we all have

PAGE 30

'~ ~' ... ... '~ .. .. ....... .. .. -30-.\000679 1aperfectfons of perception. In this group of patients, there were ny uncertainties particularly 1n the first two groups~ But there is the singular assurance that virtually all would be dead, frretrfevably dead, ff they had not receive the life-support treataents under scrutiny here. Thus, the tendency was strong to err to treat too ny persons rather than too few. Thf s tendeniy was regardless of the age of the pa tfent or the nUllbers of coaplfcatfons except for those where procedures. could_ not be conducted because of technf ca 1 probl!ts. Second, there is a lack of deffnitfon of what dfalysfs does. Dialysis replaces the function of a vital organ systell~ the kidneys. Dfalysfs fs by no ans perfect fn its role of replacent. It aust be defined as a series of procedures that replace the function of a vita 1 organ systea. This f s quite different than a respirator or paceMker because these are devices that assfst an existing organ. If the lungs fafl cOllll)letely, a respirator cannot replace pulaonary function. A paceker 1s useless without a viable heart. At this writing, the art1ffcfa1 heart ts an experfntal device not yet proven for routf ne use. There are only two analogie.s that are, or were, fn regular c11n1ca1 use. The artfficfal lung was used fn patients wfth polfoayelftfs when the nerves tblt innervate the tespfratory auscles were affected and respfratfon ceased. The tron lung replaced the function of the auscles of respfratfon. It has often been used as an analogy to dialysis therapy. The second fs insulin

PAGE 31

-31-. 000630 therapy fn diabetes tus, particularly juvenile onset diabetes. The cause of diabetes ts loss of function of the islets of Langerhans and the resultant lack of tnsulfn to sustain life. As far as known fn this society. ft fs not conscionable to withdraw insulin therapy and allow death to occur froa byperg1ycea1a or ketoacfdosfs c0111. Lfkew,se. ft was not custory to withdraw the arttffc1a1 lung fn the polioayelftis cases. The concern about withdrawing dialysis trea tlllent is then clear. To eaphastze the point tr. the extre. the question ts whether there is such a thing as a natural death fr011 kidney failure fn the era when artificial kidneys are f n coaon use? Is there a ral faperative here? If the answer lies tn the baste right to privacy and self-determfnatfon. then the.decision resides with the 1nd1vfdua1 patient. If the patient fs incOllll)etent, then the decfs1on 1s left to others. There f s no ethical precedent here except to do what is right, a woefully 111-defined charge. In the State of Massachusetts, the Supreae Judicial Court ruled that the atter of wfthdrawfng dialysis therapy ts a tter for the Court to decide even though the next of kin and the physfcfan have agreed that the aost reasonable course was to dfscontfnue treatment in an fndfvfdual judged to be incompetent (the tter of Earl and Springs, Mass., 405NE2d 115, 1980). Thfs is the only Massachusetts case that addressed dfalysfs therapy in incompetent individuals. Other decisions fn that state are consf stent about life-support systeas fn 1ndfvfduals unable to mke their own decisions (Sakowfcz to Brophy).

PAGE 32

000681 -32"' If thfs precedent 1s followed, the courts will indeed have their hands full. The cases presented 1 n thf s report f ndf ca te that 30 cases would have been presented to the courts fn this area in 1983-84 for dialysis cases only. In the usual course of judfcfal events, ny would not have received final Judg11111t of the wrfttng of thfs report. Consfderatfon of alternatives tnevftably leads to the Congress of the United States. Recoaaendatfons for action are pres1111ptuous except to observe that responsible dectsfonaktilg fn tters that are clearly life and death sftuatfons ts upon us. .,

PAGE 33

{_.-, -1,, -33REFERENCES 1. Drukter w. Parsons FM. Maher JF: Replacwnt !!. Renal Function~ Dfalysfs. Mart1nus Nijhoff, 2nd Ed. The Hague, 1978. 2. Rettig RA: Implentfng !!!!. fil Stage Renal Disease Program.!!!. Medicare. The Rand Corp. (C) 1980, Santa Monica. CA. 3. P"s1dent1s C01111fssion for the Study of Ethical Problem in Medicine and ltOllldfcal and Behlvortal Research. U.S. &overnnt Printing Office. lllrch, 1983. 4. Pe11egr1no ED, Tha1111saa DC: Philosf>phical Basis !! Medical Practice. Oxford Univ. Press, New York. 1981. 5. Pellegrino ED: H1a1n1a !!!!!, .!!!!, Physician.. Unfversf ty of Tennessee Pnss, Knoxville, 1979. 6. !!!! Physf cfan ~,!!!!.Hopelessly !!! Patient: Legal, Medical !!!!!, Ethical Gutdelfnes. Society for the Rfghtto Die, 250 w. 57 St., I.Y N~Y~, 1982. 7. Jonsen AR, Siegler N, Winslade WJ: Clinical Ethics. MacMillan Publishing Co., Inc., N.Y., N.Y., 1982. ,,,.,.

PAGE 34

Q00683 -34-8. Neu s. Kjellstrand CM: Stopping Long-Ten1 Dfalysfs. An Empfrfcal s~. N Engl J Med 1986; 314:14-26. 9. Fox R: Tra1n1ng for Uncertainty. In the Student-Phystctan. Ed. Merton R, Reader 6, Kendall R. Harvard Un1versfty Press, 1957. 10. Freen RB: Selection of Patients for Experfntal Dfalysfs Studies. Kidney Int (Suppl) 1975; 2:S222-30. 11. Cesaro RIM, Jacob, o, Freen RB: A Regional End Stage Renal Disease ;.: Prograa. Twelve Years Experience. Arch Intern Med-1980i 93:494-498. 12. Lftn J, Chan Y: atsk Factors Influenefng Survival in Acute Renal Failure Treated by Heaoclfalysfs. Arch Intern Med 1985: 145:2607-2609. 13. Ra11111ssen HH, Pitt EA, Ibels LS, McNeil DR: Prediction of Outcoae fn Acute Renal Failure by Dtscrtatnant Analysts of C11nfca1 Variables. Arch Intern Med 1985; 145:2015-2018. 14. Katz J: WIiy Doctors Don't Disclose Uncertainty. The Hastings Center Report. p35 (Feb.), 1984. 15. Roe et al vs Wade. U.S. 70-18, 1973. ----16. Matter!!, Earle! Spring. Mass., 405 N.E. 2d 115, 1980.

PAGE 35

-35-\000684 17. Superintendent.!!!_ Belchertown State School !. Sa1kew1cz. Mass 370 N~E~-zd 417. 1977. 18. Matter of D1nrstetn. Mass., 380 N.E. 2d 134. 1978. ------.,


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