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LIFE SUSTAINING TECHNOLOGIES AND THE ELDERLY Le1al Issues: Italy !mily C. Moore, Ph.D. for the Ottice of Technoloa Aseessment, U.S. Con1res1, 1986 The uaistance of Osvaldo Geiser in the preparation of this report is 1ratetully acknowled1ed.
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Contness of the United St-.tes Office of Technology Assessment LIFE-SUSTAINING TECHNOLOGIES AND THE ELDERLY WORKING PAPERS, VOLUME 4: USE OF LIFE-SUSTAINING TECHNOLOGIES IN OTHER COUNTRIES July, 1987 Legal Issues: Italy, by Emily C. Moore, Rome, Italy. Elderly in Japan, by Rihito Kimura, Kennedy Institute of Ethics, Georgetown University, Washington, DC. Legal Issues: Canada, by Holly Dugan, Johns Hopkins University Center on Aging, Baltimore, :\10. Legal Issues: Yugoslavia, by Christoph Haug, Johns Hopkins University Center on Aging, Baltimore, MD. Legal Issues: Federal Republic of Germany, by Christoph Haug, Johns Hopkins University Center on Aging, Baltimore, MD. The Medical Care and Treatment of the Critically m Elderly in China: Issues and Lessons for American Policies, by John Langenbrunner, Washington, DC. These are contractor documents prepared for the OTA assessment, Life-Sustaining Technologies and the Elderly. The complete set of contractor reports for this assessment consists of five volumes. OTA makes these documents available for the use of readers interested in these topics. These contractor documents have not been reviewed or approved by the Technology Assessment Board. The findings and conclusions expressed are those of the authors and do not necessarily reflect the views of OT A, the Advisory Panel, or the Technology Assessment Board.
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PREFACE '-. With sadness, I note here the unexpected death of my colleai'Je's 30-year-old friend who had been receiving dialysis treatments. Mr. Geiser's work on this OTA project br0u1ht him into contact with medical persoMel who pointed out that his friend would be better off havina a kidney transplant --especially since he wu so youna and would automatically have "priority." He intended to pua al0n1 this advice to his friend, who apparently had not been so ad vised yet and apparently intended to continue dialysis indefinitely. The friend's condition unexpectedly worsened. When a nurse was preparin1 to take blood from his arm, a nursin1 colleaaue pointed out that the patient was already dead. Hi family believe that both.the oriainal handlin1 or the kidney ailment (resultina in the need for dialysis) and their son's death resulted from medical misjudament and mismanaaement. They did not, however, permit an autopsy nor do they intend any le1al action whatsoever. Case closed. , -
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TABLE OF CONTENTS .... I INTRODUCTION l A. Doaraphic Profile: A1in1 ot the Population 8. Role ot the Family 2 C. Role ot the Elderly 2 o. Attitudes toward Oeath 3 E. Role ot the Church 3 II. STRUCTURE OF THE HEALTH CARE SYSTEM 4 III. THE RIGHT TO TREATMENT AND THE RIGHT TO REFUSE TREATMENT 10 A. The a. The 1. 2, 3. 4. 5. 6. Risht to Treatment 10 Ri&ht to Refuse Treatment; the Riaht to Die 11 The Current Controversy 11 TheChurch's Position(s) 12 Leaal Issues : Leaal Issues : Detinina the Moment ot Death 16 De Jure vs. De Facto; Physicians' Attitudes 18 The Decisionmakers: Doctors, Families, Patients 20 Propose4 Law on Euthanaaia 22 ~IV. LI,ABILITY . 23 REFERENCES (includina personal contacts fith informants) ., APP!NDICES: A. National Health Service B. Health: Goodbye Services; NEarly Everyone of Us Will Pay. C. nierapeutic Tenacity: the Case of Calvino D . Tne Man ot Civil Riahts: Fortuna is Dead !. Public Opinion on Euthanasia, Active and Passive F. Processed for Maltreatment G. Patient's Billot Riahts
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I) ,\ I 1 I. INTRODUCTION No one seems t~ believe that technology has much to do with the problems of' the elderly in Italy: ''It's not a question of technoloo, they need social uaistance" (Crocella); "It's not technoloo, it's a sociological problem" (Mori); "It's not technolo1Y, it's a moral problem" (Merli). Only indirectly is the problem viewed as "technolo1ical" or stemmin1 from technoloaical advances. Mori (ethicist and expert in jurisprudence) notes that before advances in technoloaieal health care made the prolon1in1 of "ve1etative" life possible, there was no need to distinauish between active and pusive euthanasia. And demo1raphers point out that the "technoloo" of contraception and safe abortion, to1ether with chan1in1 economic and social values, have caused the sharp post-war decline in Italian ferttlity, which in turn has resulted in a serious qin1 of tho population_. A. Demoaraphic Profile: Aainl of the Population The population of' Italy was 47.5 million in the 1951 census, risin1 to 56,244,000 by 1981 an annual increase of .064~ in the 1951-61 decade, but only .o~ in the decade 1971-1981. Post-war crude birth rates dropped from 22/1000 population to 11.3 in l9&0(well below the US rates of about 15). Crude death rates were 30 in.the iMediate post-war period, dropping sharply to 10 and remainin1 stable. Mi1rations abroad also declined, from over a million in the years 1951-61 to less than a quarter million in the subsequent decade. In 1951 the population 60 and above number 5.7 million, or 12.2~ of the total population, risin1 to nearly 10 million at present, or 17.4%. Per sona over 80 more than doubled in 30 years, now nwnberin1 l.3 million. Lite expect~cy was 65.6 in 1950-53, risina to 72.8 in 1974-77 (undoubtedly even hiatier now in 1986), due primarily to reduced natality and declinina infant mortality. It is projected that by the year 2000 (with continued low fertility and a net mia~ation or zero) the population will number 56.2 million amon1 whom the elderly over 60 will constitute 22.1%; nearly one fouth of the female population will be 60 and over. (Comitato Nazionale Italiano sui Problemi della Terza Eta, mimeo from the House of Deputies) It is unnecessary to point out the specific changes in social and eocnomic life that these chan1es imply, nor the added burden on the health care aystem and social services (Natale 1981).
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l PiHOftte 2 .. Valle d'Aosta 3 Loebardia 4 Trentino Alta Adige 5 Veneto & -Friuli Venezia Giulia 7 -Liguria 8 E1ili1 Aoaqna 9 -Toscani 10 .. Ubria 11 March 12 -Lazio ?l -Abruzzo lit Molise IS CHpania l& Puglia 17 lasiliuta l8 Calabria 19 Si.cilia 20 -Sardegna ,. .. ,,, \
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. () f\ While it is risky to generalize abo\J.t an entire nation whether'-the i .. subject be national character, heal :h statistics, or provision of public services -it is particularly important in the cue of Italy to point out reaional distinctions. The No1~th --includina French-minority zones in Aoata and German-speakin1 minorities in the South Tirol (Alto Adiae) -1a aenerally more "European" in orientation and social indicators, while the South ( includina Sicily, Sar1.ieana, and Calabria, as well as Napoli areas from which a larae propor".:ion of Italo-Americans emiarated) is more "Mediterranean" in culture, soC";ial and demoaraphic characteristics. Rome is aeoaraphically central, but. arouped for statistical purposes with the North ( this despite larae mi1.rations post-war from impoverished southern areas which have strongly in-Cluenced life in the capital city) Some examples of rea~onal differ!nces: life expectancy at birth is 70.6/77 .2 (male/female) in all-Italy (1977-79), but only 69.7/75.5 in Campania (Naples and surroundina province). Hospital beds per 1000 inhabitants are 8.2 in North-Central reaioAS, or.1ly 6.2 in the South. Silf\ificant for the topic'-='" discussed here are proportions votin1 for the Christian Democratic party in the 6/83_ parliamentary election: 37. 341 in the South, 30 .a~ in NorthCentral. Divorcee ar~ more than double in North-Central areas (27.6 vs. 13.6 per 100,000 popillation) than in the South. Northern suicide rates are hi1her, while Southern crime rates are hiaher. Expenditures for social security and health are far hi&her in the North. {Istituto Centrale di Statistica 1985 and Istituto di Ricerche sulla Populazione 1985) a. Role ot: the Family From films, books, friends, and sociolo1ical literature, Americans have no doubt heard often how important in daily life is the Italian family. In Italy, one q:uickly learns that to have one's car repaired, a sofa re-up holstered, or to find a job, family coMections are essential. The Family haa alao been likened to a small state: since the aovernment does not provide certain services, the family must. Sickness is a prime example of the centrality of family care, where a 100d deal of nursina, particularly 2. tor the, terminally ill, is expected to be done by female members ot the family. C. Role of the Elderly The trend in Italy is not unlike that in many other industrialized nations, except that it is happenina later. From a role as respected, wise, and in some waya powerful, the elderly person increasinaly finds him/herself in the
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role or the "peso" (weiaht, burden), particularly when sick. Mo,st r:,fus,, ,..., I, to ao to the few nursing homes that exist; despite names suae,_1:ina\_ lwc:uri (Villa Bella, etc.), such homes are very expensive and often accused of providina atrocious care. In limited instances a state-paid nurse pro vides domiciliary care, but daily chores for the frail but not sick elderly are expected to be performed by +-he family. The role o'f the elderly female is the subject ot social research and journalistic attention, especially as many who 1rew up in a world in which divorce was .unthinkable and women did not have paid employment now find themselves divorced, unskilled in the marketplace, and impoverished. D. Attitudes toward Death 3. Death and funerals a~e often noted as a particularly revealin1 aspect of a culture, thou&h.often misunderstood by outside observers. Elaborate floral arran1ements, mournful public processions for funeral cortea (snarling traffic for many blocks around), and minutely prescribed death-related ceremonies and duties are characteristically "Mediterranean" and thus more common in Southern Italy. ( Americans who have seen too many movies mi&ht jwnp to the concl~ion that expensive elaborate hiahlY public funerals are invar.iably for decedents ot the Mafia. ) Mori (see list of informants) characterizes Italian attitudes toward death as more "tabu", "closed," and "secret" than those of more northern countries. Others reter to Italian funerals as "hi&hly emotional, sentimental," or as "occasions for family reunions." Italians visitin1 cemeteries in northern countries, for example, say they are struck by their beauty and opeMess (lackina hiah watls, family compartments shields of cypress trees): "I've even seen people 10 to cemeteries to stroll /.!;a in Pere Lachaise, ?ar!!/; we're far too morbid to do that" (Mori). Caskets are open before the funeral, except of' course in cases of aross disfiaurement; widows are expected to kiss the dead husband. Cremation, opposed by the Catholic Church, is very rare. !. Role of the Church Nominally more than 90% of the population is Roman Catholic. To understand Italy at all, one must appreciate its close ties with the history and current center of power of a worldwide reliaion, and the recency of the country's political independence from the Vatican. (The first Concordat between Italy and the Vatican was sianed in 1929 by Mussolini, only revised in 1984.)
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. . This is not the place to draw conclusions concernin1 the de facto powezt1 of(; . the Catholic Church over state affairs, as it is clearly still a.matter of considerable public dispute. In fact, over the strenuous objections of the Vatican, liberalized divorce and abortion laws were passed in recent years. But the relationship between the Vatican and Italian politics can be viewed 4. by quick reference to the role or the Christian Democratic party (DC). Italy's 4!5th poet-war 1overnment hu juet been formed, with a 5-party coalition. The Prime Minister is a Socialist, but the lar1est party is Christian Democrat, about a third or theeiae~onta. Together with three other ri1ht-of-Cornmunist parties (but excluding the racists) they make up the 1overnment. The Communist Party is the second laraest vote-getter (actually the lar1est in the European Parliament elections last year); it constitutes the opppeition~ ----. -., -. aatil 1.la't!~-tt1eaovemuneatyo~:----~i::bu41.-hall1z:et~u ~~. .. ,_.... ---... ---,., . DC control. mrehurch's role in all of' this is ostensibly indirect, but aenerally acknowledged to b considerahle. Pope John Paul II openly ur1es voters to vote ror the DC party, and !or decades it has been common practice tor the Cull wei&ht o? the Church to have been brou1ht to .bear to assure !fie defeat or the Communist Party in various elections and referenda thouah the influence has not always succeeded. In medical matters, as we will see below, the Church has considerable influ ence: many hospitals are Church-run, staff in public hospitals are often re li&ious persoMel; coincidin1 with the entry of the Communist party into the aovernment of the city of Rome, the Vatican withdrew reli1ious persoMel from public city hospitals, creatina a sta!fin1 crisis; lar1e numbers of health per soMel are trained in Church institutions, atter having received Church-spon sored education; medical societies are a primary channel for dissemination or Church doctrine and cur.rent papal teacnin1. Papal decrees, speeches, etc., whether to medical societies or to Parliamentary deputies, are not "orders" but they are suueations taken quite seriously by practicing Catholics and their collequea, all or whom function in an environment heavily influenced by the Church. II. STRUCTURE or THE HEALTH CARE SYSTEM (See also Appendix A, National Health Service.) Italy hu/c!-omprehensive health law which applies nationally, to which reaions may add their own laws and services; !or example, in the regions "roase e riche" (red and rich), primarily in the North, additional services are provided, such u social assistance, domiciliary care includina social workers u well u nurses, etc. -.~ :ST COPY AVAILABLE
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La,:i #833 of 1978 was an effort to "rationalize" a frapented syste" of,. ,ep-<, \ I o t 'I : arate provisions; various entitites existed accordin1 to the tYP.e of employee en1ineers, aariculturalists, lawyers all had separate health units. There could be an abundance of services in one quarter of a city while others ,j. were lackina. All entities were public, and it was obliaatory to belona and pay in, both f'or health care and pensions. (Only the "liberal professions" and storekeepers were exempt.) The system coat more than it wu takina in. Virtually all parties a1reed to a chan1e, includin1 the extreme riaht which "didn't dare oppose" ( Crocella) The Communists contributed to the formulation of the law, but by the time it was to be impl...,ted, they were no longer part of the rulina coalition. Implementation has been slow. All citizens, plus foreianers from countries with reciprocal qreements, are entitled to free medical care under law 833. (Its financina and operation are said to be similar to the British system.) Care includes physician visits, medicines, ambulances, hospital treatment, laboratory analyses etc. Gradually, certain cateaories of services have been excluded and certain fees introd~ced -e.a., patients pay a small sum for prescriptions; dental care is excluded, as are thermal batn cures, certain specialists, particularly xpensive technolo aiea such as CAT scans (unless prescribed by a national health service physician and performed in a public hospital or ~linic). Patients may choose their own doctor, many of whom provide services in both public and private settinas. Those who wish to avoid lon1 waitina lists (e., .. 60-90 days to enter a public hospital} and the arossest inefficiency may pay for private clinics and doctors. Private hospitals and clinics are less frequent in Northern reaions because public services there !unction more efficiently. Services are provided in hospitals, clinics, and in ambulatori (or outpatient} settin1s, all of' the above both private and public, with reliaious persoMel in all dettinas. It is common to hospitalize patients for many days for diaanostic tests, esrecially prior to suraery. "Parkin1 of the elderly IJ:.n hospita.!!,/, especially in vacation time" is common (Manni 1985). Hospices are virtually unheard ot; the Italian word "ospice" is a "home for the a1ed." Italians aenerally prefer to die at home. "Why create a new type of health facility just to provide a non-hospital settin1 for the dyin1, which is what the family is supposed to do?" (Anon.) Families attempt to anticipate the time of death in order to remove the patient from a public hospital. If he dies in such a hospital, there are expenses in removina the body, but more importantly, the head physician le1ally has the Mori points out that UK/USA-type hospices can mute the issue of euthanasia, since coatort, pain alleviation predominate over life-auatainin1 techniques. (1985b)
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(\ ri&ht to order an autopsy. Leaally, the family has no ri1he to. refuse,-but ~. if they "weep or threaten,'' the result may in fact be no autopsy. Autopsies are quite contrary to Italian culture, but the law permittina them passed under pressure from medical 'researchers "because there's never enou&h material for medical reae.rch" (Merli). The 1988 finance bill, hotly debated in Parliament at the end of 1985, con tains sharp cutbacks in all sectors, but health is to be moat drastically attected. Only parts of the bill were actually passed, but other proposals have 1one into etrect by decree, such u a rise from to for each prescription, and a rise from lSS to 251 in the proportion ot the cost of medicines and lab analyses that patients will have to pay; those in the poverty claaa would be exempt-. ( See Appendix B, "Goodbye Heal th Services. ) The proposal would also rel',llate the number of beds, now 6.5 per 1000 population, to be 1 per 1000 within 3 years, and bed use to be not less than 75S (reterrina to non-acute conditions needina low-intensity care); hospital stays should averqe -no more than 10 days for acute conditions. -The current National Health Service functions throuah a ne-twork ot "local sanitary units" (USL). There are now 20 in Rome, tor example, with proposals to create maxi-USL's or Super-USL's. V,etters to the editor point out that such a rearranaement of boundaries may ensure a hospital in every USL, but will not brina hospitals closer to homes. The present districts are baaed on political considerations, bearin1 no relation to the distribution ot ser vices, some ot whi_ch are concentrated in a few zones of the city. ) Amon1 the numerous recent ''scandals" reported in the press concernin1 the health care system is the unanimous decision by members of Parliament to ensure that they will not have to stand on lines and trek from physician to authorizina centers; instead, a USL just for their own ( and that othe constitutional juc:Jaes and President) hu been created within their work ottice buildinas. "The men of the Palace L!lazzo Chiai, where Parliament mee~/ have carved out for themselves an island ot happiness in the chaos or the health bureaucracy. Not exacly a USL just for them, but almost so A 'little law' -pased with unanimous accord of all political parties, from fuciata to communists continues the article in Giomale (politically ri1ht-win1), notin1 that in such a way the elected representatives can shield themselves from full comprehension of the maltunctionin1 ot the system tor the ordinary citizen. (Giomale 1985). BEST COPY f "~-'! r '"'' r
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' () .. I The "scandalous" conditions (a term used reaularly in the presa, in '-reference ... to health care) are araphically summed up by the pliaht of the USL director in Rome. The followina poianant comments indicate his frustration at bein1 char&ed with manaains -and presuma'3ly improvina -services, while beina blocked in hi ettorta to do so by a variety of individuals, oraanizations, and traditional practices. Rome's situation is atypical in the sense that it ia the capital and thus suffers many of' that city's unique problems, but it can also be viewed aa "representative" in the senae that conditions are nJri.ther ao bad u in the South, nor as &ood as in the North. In Lazio (the reaion surroundina Rome) there are more licenced clinics than elsawhere because the public hospitals barely function. 54-1 of the Lazio health buqet went on these private services, in contrast to only 4-I in Veneto (includins Venice) and l2S in Lomb~dia (includina Milan). 7. Health care abs ... orbs a low percent of costs; moat aoea tor administration ~One hospital bed day coats ,000 in licenced (private) clinics (about S400). "Private hospitals aet rich on public funds." USL nwnber l, in the center of Rome, where parliamentarians ao, waa ., contolled by the Communists when in power; USL number 2 by the Christian Democrats. Both are considered "showcases." USL l haa a budaet of billion as a major industry -with 2 specialist hospitals, 19 policlinics (outpatient), 3 private licenced clinics, 2 private reli&ioua hospitals, plus the Vatican-run Bambino Geau (pediatric) and Bene Fratelli (on the island in the Tevere). It serves 150,000 persona with 1.3 million services annually. It has 2300 employees, includina doctors. Halt the budaet aoes to licenced clinics. billion aoes to staff', and billion to current expenditurn. There ia nothina lef't over to build more modern structures or machinery and this is a "showcue" USL. There are many reports to the police -too many people in line, mice in cellars, cockroaches in the operatina room, poor security. "The fire vi&il, unions etc. take me to court twice a week." "Everyoaeiill denouncina everyone else -the doctors qainst the administra-cors, the nurses qainst the doctors, the unionists qainat the health directors. Now they're denouncina me, or threatenina to do so, it I try to save money Take the example ot absenteeism. We uncover~ P. c1.init: where 1:hey sianed out at 2 PM, then were reaistered only 5 minutes later at another medical center acroaa the city. So I decidad to inatall time clocka, but they reported me tor anti-union behavior." So he decided to f'i&ht only the moat important cheaters, th head phyiciana, who do u they pleued, but he wu denounced to the court, and the court ot lut reaort went aaa1nat him, aayina the
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r . -, phyaicians have the ri1ht to oraanize their service hours accordi~1 to their own needs. He then discovered that unique amon1 '2,0 Rome USLa, there is the capacity to elect~nically control all pharmaceuticals, day by day, physician by physician. He tried to use this capacity to counteract over-prescribin1; he round 12 physicians who repeatedly prescribed unnecessarily I, 20 prescriptions a day tor one patient for months. From then on, there have been 300,000 tewer preacriptiona a year, savina billion a year in one USL alone. But when he tried to save million on laundry that was beina con tracted out, he wu denounced. He ha been denounced because risk indeanity tor radioloo is too aeneroua, denounced by a physician tor abuse or power, by unionista tor daaana caused to health by the hospital environment, by patients because their refunds were not provided promptly, and by companies becauae of' lateness in revision or contracts ( such u laundry service) He ha been denounced by the pretura f'or violation ot hyaienic and accident security standards, and denounced tor scarce uae or the outpatient clinic. In fact, he saya, it wu he who pointed out that there were not enouah physi:ians in the outpatient clinics and tar too many pediatricians, which he hu to kHp on contract because or a union qreent; physicians who see no more than two patients a week are on f'ull salary. Expenditures tor bandqa were reduced f'rom to million after he prohibited their uae u cleanin1 cloth (althou&h it is suaeated that the bandqes mi&ht have been~sold aa well u havina been uaed ror polishina). 8\.fl all such eftorta to save are useln because expenaea are based solely on hiatorical experience, with automatic hik .. in eac~ cateaory for inflation. Inatead or puttina money into new machinery to save billions, the syst continues to f'unction in the se way, benefittina only the f'irms which aet contract work and the usual political partiea. (Espresso, 198!). At the time or wri tina, physicians all over Italy were enaqed in a three-day strike, threatenina others in the months ahead; hoapitals have been reduced to eraency service, and the involvement or veterinarians threatens to a. halt c01111erce in animal-baaed products as well. There are a number of issues but the primary demand on the aoverrunent is tor a contract tor physicians that ia separate trom that f'or other health workers, in order to provide doctors with "more autonomy." To balance aomewhat the plaintive lament of the USL adminiatrator, we mi&ht add to the chorus or criticiau or the health service the points made in a recent hour-lona TV prop- on the "politization of' the health service" (by the Radiotelevisione Italiana 2). Some central c011111ents f'ollow: An elderly man wu recently round dead after 8 days -in the toilet or a USL otfice; the toilet obvioualy had not been cleaned tor over a week. In one hoapital, patienta muat whistle tor care once tor a doctor, twice tor a nurse. A doctor sewina up a patient may f'ind there is inautticient suture to complete the operation and have to "borrow" troa another hospital nearby.
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It is now commonplace for patients to have to be moved from one hospital +:o another when "abandoned" by hospital staff who all 10 on vacation simultaneously. Tt is al~o commonplace to find elderly patients confined i~ ho~i~a;~; for months for no particular treatment. Our major problem is too ambitious a plan, attemptin1 to provide every thina to everyone, resultin1 in the "Spqhetti Welfare State" where no one ata served adequately; it's an effort to imitate Northern countries, but without their resources. Equality for all at any cost, ends up impoverishin1 all. We spend so much to enable everyone to have free care for thelr common cold that we haven't the funds for life-saving medicine. (The director of a private clinic contrasts the public hospital with hia clinic. He served in the war resistance, was personal physician to a number of notable fiaures on the left, and his comments should be seen in that context.) If an elevator stops in our clinic, it's fixed in 10 minutes, or if the CAT scanner is broken, in an hour, while employees in the public hospitals leave when their hours are over, re~ 1ardlesa of whether there's work to be done. Our persoMel stay on the job. A patient can aet a urinalysis done in our clinic in a day, thus coatina only ,000; in a public hospital a full workup takes 7 days and coats 800, 000. The difference between the public USLs and private health services i~becauae ot the extremely poor rnanqement of the former, with layers of top administrators totally lackina in manqement experience; expenses in the public health sector are auesswork, year after year, with no one ever havina attempted to predict them or suuest a ceilina; when they exceed expectations, as they alwa~ .do, the public pays the followin1 ., year in a variety of taxes. The bottom line is the importance of distinauishin1 the 1overnment's role as administrator from its politi~al role. With only 30S of the vote, the Christian Democratic party holds 55~ of the top administrative posts in the health service, many of them lackin1 manqement experience. We l'IIWI~ end the notion of "party hospitals." 9. The above lenathy citations are included here in order to ?lace the problems of the elderly in the context of a health service in 1enuine crisis. Decisions about access to care, selections of patients to receive treatment, and customs that have developed reaa~din1 the sensitive issues of terminatina interventions are all found within the above-described situation. In the mid-19609, there were barely 500 medical students at the University of Rome at the laurea level; now there are 22,000; many char1e that the quality of their education has much deteriora~ed; and that the flow of weal~hy patients to other countries seekina more adequate services is an expected result, while others maintain that despite all its difficulties, the system still rnanqes to produce qualified phyaiciana and other health persoMel, has equalized access to services so that the poor now have far areater access to care than before the 1975 "reform," and that better manqement and "reform of the reform," includin1 its depoliti cization, will riaht the many wron1s that now form the substance of journalistic alana.
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III. TH! RIGHT TO TREATMENT AND THE RIGHT TO REFUSE TREATMENT~'. A. The Riat!t to Treatment Apart trom the condition of law 833 noted above, we include the followina: every patient tor whom a doctor prescribes dialyaia hu the ri1ht, by law, to receive such treatment, althou1h in practice it is a matter ot "first come first served." The elderly patient 1 unlikely to be served even if he is first to come, however. ("The elderly otten have arave complications on dialysis." Anon.) In fact, a third ot needy patients in the public system do not have ~ccesa, althou&h some private oraanizations step in and provide machines, often located at 1reat distances from patients' homes. Someare provided for in-home use . There is no ri1ht to transplants. Indeed, lar1e numbers in need 10 abroad, and there is a ne1~i1ible number performed in Italy. (The Center of :..Or1an Transplants assists some patients in need. Private collections for special cues to 10 abroad are reported in the press. ) There is a widespread reluctance to donate or1ans; the Italian Association of Craan Donors ia attemptin1 to sensitize the public-tb the areat need. Until ei1ht years aao, the law required family-consent to remove an or1an for transplant; now the law requires only that the family not object. A proposed law would require everyone to carry a donor card -either a neaative indication on the card or the lack of such a card would automatically indicate permission to remove oraana. "A aenerally healthy 8O-year-old hu the ri1ht to any and all treatment that persona ot younaer aaes have. The de facto treatment that varies by aae becomes an issue only when the elderly are seriously ill." (Merli) The elderly receive antibiotics in a manner no ditterent from younaer patients; abuse ot dru& ia "coon all over the Western world." (Anon.) With few exceptiona, it you can name it, you can buy it in Italian pharmacies, without prescription; many say that doctors overpreecribe because they feel that patients do not feel adequatel) treated unless they leave the office with at least three prescriptiona. TheN is no such thin& u formal "do not resuscitate" orders; hospital peraoMel ALWAYS try to reanimate patients, reap-dless of qe." (Merli) When th elderly peraon, or the not-so-elderly person ia in coma and is 10.
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. n .... : a famous personality, such u the 61-year-old writer Calvino _(see '"Appen::l dix C), no doctor dares NOT to continue with all possible means, even after publicly announcin1 that the individual is brain dead. (Merli) There are no lawa aovernin1 other technolo1ies, all or which are a question of availability on the one hand (extremely limited for sophisticated technoloaiea, many of which lie broken and unrepaired tor len1thy period.a even in the few racilitiea that oatenaibly provide them) and the autonomy of the medical protesaion to make decisions on the other hand. A& "definitely enters into" many decisions to withhold or withdraw hydration and nutrition (Anon.); medical care1ivers "instinctively" provide less care to the elderly and the dyin1 (Merli). f:$_ee below, De Jure/De Facto, and Decisionmakers: Doctors and Nurses./ .. -8. The Rii&ht to Refuse Treatment; The Riaht to Die 1. The Current_ Controversy: There is no Italian Ri&ht to Die Aaaociation, but there is a euphemistic or1anization tor the "study ot ~ death" ( thanatoloa f. The euthanasia debate surfaces and subsides reau-larly, often provoked by an external event: the Quinlan cue, a recommen dation by the European Community Parliament (1976), a conference or phys iciana (held in Nizza, Italy, but or1zed by French Nobel prizewiMers), the new Dutch law, and most recentfy~~~P~~~faif;! deputy Fortuna, whose death at the end or 1985 effectively closes the euthanasia debate for the time beina(See Appendix Dre Fortuna.) 11. The ofticial Roman Catholic views on euthanasia are round in papal addresses, duly reported in all the press (includin1 the left win& papers), but most fully in Osservatore Romano emanatina from the Vatican. The riahtwina press rarely mentions the subject, except to report Catholic teachina. Medical Journals contain almost no discussion. Mori (consulted extensively for this report) writes scholarly philoaophical articles on the subject, but these undoubtedly have very limited readership. And a joint Protestant Catholic lett-leanina biweekly, Com Nuovi Tempi, raises the issue reaularly but hu a readership or only 400,500. The debate in Italy, as elsewhere, becomes extremely emotional. Definitions 1et lost in the shuffle. Public speakers may attempt to draw a distinction between active and passive euthanasia, but the difference is lost in sensationalist char1es of "murder." The ori1inal meanin1 of "100d death" or "sweet death" is no lon1er remember | |
PAGE 17
12. n ., , ~: ") .. ',) \_r between "kill" and "let die," between "do" and "do nothin1" or'\."wi thhold" and "withdraw" treatment are smothered in emotional debate. For those who reel that continually attemptin. to educate the public that the word means "1ood death" and not killina is a hopeless task, it is considered wiser to let the word s~mply take on the meanina or kill and notuse it at all in coMection with passive measurea. For example, Sarni (president ot the Italian Association tor Leaal Medicine coMected with the Rome bued Institute for Leaal Medicine) (1984:165) suuesta that these four isaue need to be more clearly discoMected: abortion; non-intervention in the cue ot minors, the unconscious, or the incapable; suspension or reanimation therapy in patients clinically dead; and eutt masia as an active means to p.rtiacipitate the death requested by a padent, or if un. conscious, by his family or as otherwise decided. Sarni adds that the retuaal ot cure _(diqnostic t~sts or therapy) is not "euthanasia," but that retuaal or cure and a request to suspend treatment should be aranted only in exceptional~cases. 2. The Church's Position(s) Tho who wish to support the riaht to refuse treatment, or the riaht or careaivers to suspend treatment, tend~to cite different reli1ious documents and sources than those of another view --the former citina Pope Pius XII in the l9!0's, or the Sacred Conae1ation ot the Faith in 1980, and the latter citina the current Pope John Paul II. "There is no need tor or1anizationa to promote 'Good Death.' The Church has a monopoly on buona morte." (Anon. physician, a suraeon in a Vatican hoapital where the Pope went when shot -who araues that it is certainly permissible to withhold and withdraw in circumstances of imminent death.) The same source reminds us that in Medieval times, there were reli1ious con:f'raternities "per la buona morte" (for the 100d death). Merli aar~= "The Church is not opposed to suspension of treatment." "Pain alleviation is the primary concern for the elderly dyin1 patient." Theee phyaicians, and others, refer to Pope Pius XII: "Any form of direct euthanuia, that is the administration of narcotics to provoke or hasten death ia illicit One of the fundamental principles of natural and Christianlawis that man is not master of his body and existence, only its uaer It ia licit to alleviate pain on the one hand even it admin iatration ot narcotics has, on the other hand the double effect ot shorten1"1 lite, it there is no direct causal link between the narcotic and the
PAGE 18
shortenina of life" (Pio XII, 1957, emphasis added). qain, citina Pius XII: "The fundamental principles of anesthesiology, u science and u art, and the ends it pursues do not raise objections. It combat forces which produce harmful effects and impede a areater aood. Th doctor, who accepts its method, does not enter into contradiction either with natural moral order or with the Christian ideal._ He is tryin1, accordina to the order or the Creator (Geneeis 1:28) to place pain under the power or man, and uaea to this end the tindinp of science and technoloo." (Pius XII, l9!57a) "If the same narcotics administered shorten the lenath of life, would it be necessary to renounce them? In 13. the cue posed, it concerns solely the avoidance on the part of the patient of insupportable pain, tor example in the case of inoperable cancer if the administration ot narcotics provokes two distinct effects, the relief ot pain and the shortenina of lite, it is licit; it is necessary, however, to see if there is a proportionate balance between the two, if the advani~1es of one compenaate for the disadvanta1es or the other." (Ibid., the pope answerin1 questions from the audience of anuthesiolo1ists) Speakin1 or reanimation to doctors and others, Pius XII declared explictly f that it IS licit to interrupt the process of reanimation when a state or clinical death is established. In tact, he pronounced himself "in favor ot the family which, at a certain point in verification or the irreversibility. /of the patient's condition/ asks tor the CeJllCffaL of &:-Napira:tor, --declarin1 that this can be licitly insisted upon until the doctor interrupts hia efforts since there is, in this cue, no direct effect on the lite of the patient and is not euthanaaia." (Pius XII, 1957b) (Note that the family, apparently, must persist in such requests until the doctor concurs.) In 1980 the Sacred Con1reaation tor the Faith issued a declaration, which analyst deacribed ae "more open" than earlier positions, callin1 more on personal reaponaibility, and notin1 the difference between "proportionate" and "disproportionate" measures, the latter bein1 deemed not obli1atory. "The present text insists less than Pius XII on the idea that only God is muter of lite and death. Or more exactly, the Biblical idea is translated thusly: '!very man has the duty to conduct his own life accordin1 to the dHilft of the Creator. His life is aiven him u a 11rt which he should value, which find its fullness only in eternal lite.~ The present document, compared with earlier ones, in tact distinauishee with more
PAGE 19
l4. preciion suicide and sacrifice in li&ht of" a areat cause tt:te exanq,le : n .._ \. .. ' .. or "Holy" Kolbe f.:s.he priest who offered himself in a concentraf:ion camp in order that Jews be spared -not yet sainted at the time of the citati2!l/ On the other hand, noteworthy is the firmness shown in condemnin1 suicide and euthanasia if done for existential reasons It ia not a question of a fatalistic or paintul conception ot death. The document does not deny the traaic upect or the last moments of earthly existence, but recalls Chriatiana or today to that which they've toraotten, that this is above all an encounter with thrist, entrance into a new cOIIIIIIWlion with God Sufferin11 not, in itself, a savior, redemptor It should not be considered an inevitable element of the human condition Prudence requires the attenuation or sutfereina. A heroic attitude is laudable Concretely the choice is rarely between pain and non-pain. Even helped by medical means, the sick (especially the dyina) person lives in a situation of depression, humiliation, slow and successive cancellation Fi1htin1 qainst pain, uain1!:dru1 that are pro1ressively potent, presents the risk of shortenin1 ,the elderly person's life. But Pius XII referred to the -double effect principle. It is possible to tolerate such a risk it it is not wanted far itself and if the risk is run only indirectly The clusic documents distinauished between "ordinary" and :extraordinary" therapy; many moralists have renounced this criteria which is very relative. They 10 less far than many doctors who, in line with their profession (to protect life at any coat) risk prolon1in1 the life of larvae The present declaration poses a series of four solutions, concrete, for precise situations The first is that of the use of disproportionate therapeutic measures (parqraph IV). In one environemnt the meuures will be ordinary, in another extraordinary. It is a secondary aspect; that which counts is to know if there is proportion ality between the measures used and other aspects of the sitaution: the quality of life which it is possible to attain, takin1 into account the statua ot the sick person and his physical and moral resources. It is poaaible to le1itimately jud1e, in certain cues, that 'the investment in inatrwnenta and in persoMel is disproportionate to the predictable results, and that the measures set in motion impose on the patient discomfort or surrerina out ot proportion to the benetits which he could receive from them.' In a certain sense, one could talk of a conflict of duties and or duties with ri1hta but takin1 into account that in any case there is no trans1resaion of a moral minimum absolute as in the cue of direct euthanasia
PAGE 20
. fl -i \; : :1 or abortion It is not a question of aivina to the individ~l~ c~ns~ience .. the ri1ht to determine aood from bad The conscience (of doctors, of the patients, and of their relatives) works in continuity with moral ob liptions, but also with 'certain aspects of the case.' One sees without doubt the dan1er of certain possible abuses, but on the other hand a large lS. place is 11 ven to 'personal respor\8 ibi li ty. "' ( Delhaye 1980: 795-798 emph. added ) It.mi1ht be noted by this non-theolo1ian that the issue ot personal freedOftl of conscience is one ot major difference between Catholic and Protestant teachina, u is the fundamental basis or whether God or the person is "muter" of his body and destiny. The present pope, 1e~erally viewed as very conservative on a number of issues, has not unexpectedly taken a more restrictive stand than his pre-. decesaors on the issue or euthanasia. In October 1984, Giovanni-Paolo II reatfirmed opposition to abortion and euthanasia in a presentation to the conaress of Italian Anesthesi0lo1ista' Association. ''The Church, as you-'-_ lmow, is not tor the"" support at any cost ot pain. The Church considers licit action which tends to reduce or eliminate physical ~ain However, althou1h con~irmin1 this principle which hu its roots in the Bible, we exhort Christians and all believers to t,:>lerate suCterin1 in union with f Christ In sutferin1, in fact, the believer finds the stren1th to purify himself and to cooperate in the salvation of his brothers." (John Paul 1984) ot Moat recently, John-Paul addressed a con1ress /scientists, October 1985. \ It is interestin1 to see the different emphases aiven by the press: while the Italian press referred to the Pope's re-condemnation ot euthanasia, the International Herald Tribune trumpeted his support tor "death with di&nity." The casual reader mi&ht think that this means passive euthanasia, or painkillers that both alleviate pain and may also hasten death. But a more careful readin1 (particularly of the entire text which we obtained in !n1liah translation from the Vatican) show that "dil"tity" has many in terpretations, and that such measures are NOT included in the definition of dianity aa used here. John Paul aaain notes that sufferin1 is part of normal human existence, and that when one is about to encounter Christ one should not be druged to unconsciousness. "Accordin1 to the Pope, to con front the problem of euthanuia, it is necessary to be1in with two presup poaitione: lite is a value and death a natural event. From this we derive
PAGE 21
' 0 .' .~ that life cannot be interrupted, not even to alleviate the sufferiniof a painful death. and that death cannot be avoided since it is pu~t of human esperience. It is correct that scientists and doctors dedicate themselves to prolonaina human life, and for means to better it, but not to overcome it. 'Only God' said the Pope 'is muter of life.' Stern judment also for tho who help the sickto confront death in an unconacioua state, because thuilly they impede tem trom encounterin1 Christ in full conacioueneas. 16. '11\e beat thin1, accordin1 to foytyla, is that the sick person suffer with patience and at the end die in his 'natural' time. !very attempt, every cure which tries to alleviate pain or this puaaa aoea aaainat the 'natural' condition or human life. One can resort to narcotics only if the patient does not have the '"'oral force' to tolerate the sutferina." (ADISTA 1985) In the same add~, John-Paul declares that it is permissible to use experimental technolo1ies, even if they carry some risk, when more ordinary methods fail or are not available, and it is also possible, with the patient's consent, to terminate such extraordinary meuuree if results fall short -of expectations. Account must be taken of the patient's wishes, those of his tMily, and the doctor's advice. There is no obliaation 'to initiate such extraordinary, possibly risky, methods of care. He thus appears to be copin1 with the difficult definition efwhat means are extraordinary and which are ordinary by referrina to experimental, potentially risky methods and declarin1 these non-obli1atory and interruptable, while makin1 no refer ence to the interruptability of other measures. (Osaervatore Romano 1985) 3. Le1al Issues: Definin1 the Moment ot Death; Clinical Death It is not by chance that we have placed reli1ioue considerations before le1al ones in this report, for laws, court decisions, as well as common custom are heavily influenced, if not dictated, by Church teachin1. Since there is no Italian law specifically forbiddin1 euthanasia, other than the wider law concernina homicide, one must look to the law on trans plant tor word on detinin1 death. (As noted above, there are tew trans plants in Italy, Merli ot the Inatitute for Leaal Medicine points out that the transplant law protects physicians trom prosecution, rather than reaulatin1 their behavior.) There have been etforts to codity transplant law tor over 25 years (Merli), with little succesa. The law of 1975 Number 844 hu now been in etrect over a decade; in 1983 a revision wu proposed, which is under discussion in the Senate. While doctors seem to
PAGE 22
1, 1 .-, -1 wish to keep the law -or rather the non-law on euthanasia. vaai,ut,.'i. ... leavina them scope for "the exercise of coon sense, not like you Ameri-l7. cana with a lawyer at every bedside," there is considerable support for claritication.ot the transplant law -in order not to restrict, but to turther protect, physicians. The 1975 law refers to measurements of heart, respiration and brain activity: two circumatances are distinauished (Merli): when the heart atop, it ia permissible to enter the body 20 minutes later to remove survi vin1 tissues. It, however, it is the kidneys, heart, or lun1 that are to be taken tor use in transplant, then a flat electoen cephalo1ram tor 24 hours is sutticient~ Article S refers to a committee composed of one le1al doctor, one anesthesiolo1ist tor reanimation, and one neurolo1ist speci.a:l,ist in electrocephalop-aphia. The coittee must obae~e the pat:ent for 12 hours to determine the moment ot death. The proposed new law -takin1 into account advances in neuroscience, would require one doctor to determine it brain function _hu irremediably stopped. The or1an donor "1m.1~t be surely dead, but not too much." (There is lit~e chance_ ot a mis-translation of this charmin1 phraae, since the words are all quite aimple. Perhaps a cultural aap exists, but my collaborator could also not fathom what "not too dead" really means except the obvious interpretation that the heart must stil~ ~e viable even it the patient is dead in a le1al sense.) The propoeal also refers to brain death, or flat brain waves tor only 3-4 hours, even it heart and lun1s are still functioning, leavin1 to medical science and the doctor's conscience the decision, takina into account "the particulars of the situation." (These, presumably, would include the patient's a1e, and possibly his potential "quality ot life.") The bill seftlll unlikely to pus. Meanwhile, between the l975 law and the present proposed law, in 1977 there wu a presidential decree (NUmber 409) which contained seven titles con cernina the ucertainment of death and authorization t.'or removal and transplant, conaent, referrals to re1ional centers, etc. baaed on the recom mendations ot the European Council that transplants be permitted if' no con trary will has been expressed by the donor. Atter days or t.'ront-paae lamentations in all the major newspapers, the way wu finally cleared for pertormina heart transplants in Italy in eiaht specially equipped centers. The delay stemmed t.'rom "bureaucratic bun&lina" (retuaal by the health minister to sian the final permission), and resulted in headlines about one patient who died while waitin1, and another whose
PAGE 23
18. !) -. -., ~. : : t \.' .... '--.' " I identU'ied donor was tinally buried without removina his heart~ ( This ,.~ patient, however, became the first to receive a new heart when the bureaucracy finally moved and another suitable donor was found.) Recent headlin carried the story of the a-year old whose family had collected 165,000 ao she could 10 to America for a heart transplant; the money will be returned, since she received the heart ot an Italian 7-year-old instead .. 4. Leaal Issuea: De Jure vs. De Facto; Physicians Attitudes Italy, u elsewhere, has examples ot yawnina aP between law and actual practice, or, where law ia fuzzy, ot wide ditterences in interpretation. Moat ot these discrepancies in Italy can be summed up in one sentence: the doctor decides . I Two atron1ly diveraent opinions can be cited by prominent physicians, both important operatives at G$111elli Hospital -Vatican-run, considered probably the bnt hospital in Rome, associated with Catholic University. our anon ymoua consultant saye, tor example: "Doctors will do everythina to save.Youns person who's had an accident, but tor a tumor in an old person, we only try to minimize the pain." "It a terminal patient is awake, we never unplua him, but water mi&ht be substituted tor nutrition in the tube." "It t is not only aae that determines decisions, but potential quality ot life." "Consult the patient? Not really. Consult his family? Why? The doctor decides." From the same hospital, professor Corrado MAnni, director or the Institute of Anestheaiolo&Y and ReaniMtion ot the Universita Cattolica del Sacro Cuore, maintains that no one ever asked him to help him to die, that euthanaaia means "to 1ive death" and is therefore always homicide, and that to suspend treatment is equivalent. He says that modern medicines are now available that will alleviate pain without hutenin1 death, so the "double effect" arawnent is now moot. It the doctor does NOT inaist on every poaaible therapy, he maintains, then patients will not trust their doctora. Therapies that -may have been conaidered extraordinary and risky 90 yeara aao now have a better chance of success today and should be pur aued; even it they don't succeed in curin1 the present patient, their ex perimental use will benefit future 1enerations. He is certain that the ujority or Italian physicians aaree with him, and that his views are in no way baaed on Catholic teachin1 but rather on 30 years of proteasional experience. (Oaservatore Romano 1985A) Despite their apparent ditterence ot opinion on the initiation or extraordinary means, or their interruption, th two phyaiciana have in comon the opinion that the decision belonas to the physician, not to the patient or his tamily.
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19. '1 :~ ... ') --,.' '-.. ,..., Merli, director of the Institute of Le1al Medicine, coents qn this and -.. related issues: It is 'instinct' for the doctor to treat an older person differently from youn1er ones. There hu been a gradual evolution in practice toward areater will inanesa on the part of hospital persoMel to withhold extraordinary treatment or to unplua the plup when the patient is irreversibly cotoae. Paaaive euthanuia is, de facto, widely accepted, althouah there are conscientious objectors there.too. No one technically has the riaht to unplu1, but they easily do so. Doctors do. Nurses will refuse, for fear of its bein1 considered out or the ran1e or their competence. Many publications ue a hard-to-translate expression: accanimento terapeutico (the "cane" referrin1 to doa) doged therapy, or therapeutic dogedness, or tenacity i.e., han1in1 on, bulldo1 style, continuin1 with heroic measures, reaardless. The "1radual evolution" referred to above by Merli includes a 1rowin1 recoanition that such bulliogedness is not necessary. i-There are no laws prohibi tin1 the 1radual increase of pain. killsers ,. bat as seen above there are controversies within the Church u to when they may be licit; Merli indicates that no doctor would fear a lawsuit if he were ., to 1radually increase the dose or morphine, for example. On the subject of cost, we find two quite different views: Mori says that "of course coats matter; as lon1 aa the state pays, there's no limit to the life-prolon1ina experimentation that physicians and technicians will en1aae in", while Merli also says "Of course costs matter" addin1, however, that "it's not possible to do everythin1 for everyone, so plu1s aet un pluaed to make room for the next patient." The most strikina comment of all was by Merli, who likened the Italian hospitals to a battlefield, commentin1 that "medicina di auerra" (wartime medicine i.e., triqe) wu bein1 practiced there, abandonin1 patients who are 1oin1 to die anyway. Mori the ethicist (1985) suaests that opposina views on euthanasia are furthur apart theoretically than in practice. That is, there is broad aeneral aareement on the need to lessen sufterin1 and with some exceptions such as Manni, cited above on the non-necessity to pursue "extraordinary", "heroic", "disporportionate" therapies
PAGE 25
20. .... ~.. j .. : s. The Oecisionmakers: doctors, filies, patients",:-surrosates Accordina to Article 32 of the Italian constitution, no one can be forced to accept a particular health treatment unless it-is in the public aood, as in the cue ot vaccinations; the law is intended to prevent experiements on the human body. Exceptions, of course, include the court-ordered trans tuaion tor a Jehovah's Witnesa minor in the event it is denied by the parents. In the cue of the recent heart tranaplant, the 8-year old patient ~and her tamily are Jehovah's Witnesses; the parents made the physician and his te promise not to reaort to blood transfusions in the course ot the procedure, which happily was accomplished without. the need tor blood. The newspaper accounts dn not further discuss whether the cow-t miaht have intervened, over parental objections and over the doctors' promises to let her die rather than resort to a transfusion. Merli says "It someone wants to die~ they can simply refuse treatment." Attempted suicide is not punishable. The patient merely sians a non-consent'form for intervention. Consent f
PAGE 26
, ,._ Sarni (1984:170) suuests that not only can a patient refuse t,t"eatmerit/ bt.i"t ,. that a physician who persists in nredreal or sur1ical treatment qainst a patient's will is en1qin1 in unacceptable conduct accordin1 to medical ethics and may even be borderina on illicit conduct punishable by penal law (th closest anyone seems to come to sugestin1 that battery or privacy iaau may ellter in). There is, by the way, no Italian word tor "privacy," althouah in recent years the borrowed word "privatezza" hu entered the lanauqe. Dpite the unacceptability of a Livin1 Will by the majority of the medical profession, a well-known Milan physician may be said to have declared his own such Will, orally: E. Malan, director or the Sur1ical Clinic or the University of Milan, apropos exceptional interventions in the case or Generalissimo Franco, said "As doctor and sur1eon, I must say that such 21. a way of proceedin1 is justified and ri1ht. As a man I could have my doubts about certain thinaa. For myself, perhaps, I wouldn't want to be treated in a similar way; I would prefer to exit tranquilly. I have already tol~my -istants that if somethina happens to me, not to jump all over me /takiq exceptional meuures/." (Malan 1975) -'nlere are two types of incapacity: natural (as in the cue of' a minor) and f patholo1ical ( u in the cue of mental illness) Article 54 of the penal code states that in case of necessity, an intervention is permissible even qainst the will or the patient, to save the patient's life. This is now under discuaaion. Who decides the patient's competence? The family, ac cordina to Merli, althoup there are no lawa to say so. The court inter venes only in the cue of refusal: if the patient is deemed competent, even a court order cannot torce treatment. There are 1enerally accepted procedures for decidin1 who takes responsibility far the inc011petent patient: tirst the husband or wife, then rather or mother (first-arade relations), but this is merely custom, not codified. It there is a conflict amona them, they can 10 tocourt, but this is moat rare (Merli). In many cases, the physician will "consult" the patient's tamily, but in such a way that they virtually have to tallow his advice (Mori). The decision-makin1 authority of the physician seems to be barely challen1ed. A Coaittee on Euthanasia of the Institute for Le1al Medicine haa been formed, announcina that it will meet a year from now! They-seem in no hurry to settle, or even discuss, the issues. They want clarification of
PAGE 27
22. !) \ ', '"" i_: I" the tranaplant law, but not clarif'ication of' a euthanuia law, such as that proposed by Deputy Fortuna {see below). Limited hoapital.\pace, and a situation of' wartime medicine, result in daily decisions to withhold or withdraw treatment from the terminally ill, but "it's nowhere written and no one diacuas.. it." {Merli) There are no hoapi tal conni ttees to decide; the doctor decides, and then "adviaea the faaily; it is euy to aet their acceptance of' his decision." {Anon.) "Decisions are lett to the aood aena ot the physician; if he se that the patient is incurable, he will not -aae the heart. The doctor is fflOre atraid of' tattletale nurses than ot the patient's family." (Anon.) 6. Proposed Law on Euthanasia Between the penultimate and this final draft, the rather of the proposed euthanasia bill ~ed {see Appendix D), which effectively kills the issue, accordina to mos~ observers. Socialist deputy Fortuna's proposal was baaed on the 1976 recoendationa ot the Council of' Europe (#779) which deal with reanimatioa. pain abatement etc. It does NOT deal with active-~euthanaaia. It was intended to "uaure diplity of lite and reaulation of p.aaive euthanasia." It would dispense physicians rroa subjectina to life suatainina technoloaies everyone in an irreversible terminal condition, uni ... the patteat consciously consent6cfto their use. Terminal condition was to be determined by a physician desianated by the local health unit, and he should verbally coamunicate to the re1ativea of a patient over 16 or to a minister or his reliaion or to the patient himself or his direct or indirect line of antecedents or descendents (up to the second arade of relation); these persona should all be over 16. It any of these wants to oppoae the termination or treatment, they should do so within 12 hours. Even in this cue, the President ot the Court, after hearina the reasons of the person opposed to suspenaion of treatment, and to the physician, can authorize suapension of' therapy. Only the Radical party seemed interested in movina the bill to discuaaion (not even Fortuna' own party, the Socialists, were eqer to back it, aa in the cue of the divorce and abortion bills he previoualy sponsored, see Appendix D) Merli points out that law cannot ao ahead ot culture; while brain death u a concept has now entered the common culture in Italy, public opinion ia still not "ready" even for a rational discussion or the issue.
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23. !) -, "'.i ._," ljf I ., t In an opinion poll, the family of a paraple1ie would answer differently .. Crom others in the aeneral public, on questions re1ardin1 euthanasia (Merli). In a recent poll, however, a lar1e majority or Italians (see Appendix E) were found to favor what miaht be termed "passive euthanasia" and a similarly lara ujority were opposed to "active euthanasia," althouat, support for the former interpreted on the buia ot responsea to questions that did not actually uae the term "euthanasia." (We miaht expect quite dif ferent rHponae rates had the term been Wied, in fact.) Th stratea, ot the Fortuna bill was to introduce the proposal, then let it "cook" for a few years while public opinion is educated to the meanin1 of puaive euthanuia, C'r while the issue is discussed in terms that omit the uae ot the tabu word, and only then reintroducin1 the bill to the le1islature. IV. LIABILITY There seem to be differina perceptions as to whether there are few or many ~malpractice cues in '!taly, and no way to determine just how many. Surely brin&iq =s\11.t is far less coaaon than in the US. The Institute for Leaal Medicine is involved in at 1-t 100 a year, but they do not represent all Roae or all Italy, where Merli believes ~ere may be "thousands" annually. ( COIIIIOn perception, however, is that there are virtually no such eases; an Italian medical sociolo1ist stated cateaorieally "There are practically none in Italy," and our intormal contacts contirmed this public view, which Y well explain why there ARI so few, it not beina known to most people that malpractice suits can in fact be brouaht.) Our anonymous sur1eon informant, tor exaaple, believes such suits are "very rare" and that physicians have "little to rear." He cites the case or a husband whoae wife died in childbirth; the husband was accused by friends of beina mercenary because he suueated a civil case to collect damqes. He says it is ditticul t to find doctors willina to testify qainst other doctors, but Merli aaya it is not difficult at all. Mori says a cue is brouaht only it a death is involved. (See Appendix F, the brief account of a phyaician who went to prison for a year !or havina refused a cesarean section to a woaan whose neonate died ostensibly from lesions suffered durina delivery.) Most vulnerable to suit are orthopaedists and obstetricians. Moat malpractice cues that are brouaht do not involve overtreatment, but error in diaposis and mistreatment. Nurses are also subject to suits, eapecially it they function outaide their defined "sphere or competence." (A coaputer search in the Court ot Assizes, usin1 a variety ot key,i,ords, did not tum up any aalpractice can. The cue list, however, when
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')',"~l" \.! .. ;: ._, ,.., ..... conaulted for cue on "omicidio del conaenziente" assisted suicide, or active euthanasia -turned out to be almost entirely all aborti.on cases! While doctors may feel immune to threats of malpractice, institutions of health care are subject not only to leaal prosecution but a veritable hailatona of Journalistic criticism. Our anonymoua informant points out that the poat ottice and trains are alao in abominable condition, but that the heal th care syat ia an easier taraet for journalists, particu larly thoae motivated by political conaiderations althou&h we have found bitin1 criticism in papers from the far left to the far riaht. (Criticism of health care in Rome could, until recently, be interpreted u criticism of the former Communist aovernment; it will be interestina to see if the current Christian Democrats can either improve the system or at leut turn aw,y journalistic accusations. One nurse of .our acquaintance insists that everythin1 worked better, especially the hospitals, under the ruciata.) Apart from political
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REFERENCES 0 .-.. _~;I) Anonymous physician -a sur1eon at Gemelli hospital. Sarni, Mauro. Ri1ht to Die (Oiritto a Morire) and other chapters in dell'Oaao, Giuseppe. Responaabilita e Pro1resso Medico. Milan: ~ ,, .' Giuttre, 1984. (Barni is on the faculty ot Jurisprudence, University 0 Siena, and president or the Italian Medico-Le1al Society.) Crociella, Carlo, director, Social and Cultural Comisaion, Houae or 0eputia, personal COffllllWlication. Delhaye, Monai111or, secretary or the International Theolo1ical Commission. Coaent on th declaration by the Conare1ation tor the Doctrine or the Faith. La recente dichiarazione della Contre1azione della Fede sull eutanaaia. Attualita, October 1980, 795-798. l'!apreeao. Lamento di un presidente pentito. 21 April 1985, 28-32. . 11 Giomale. 15 December 1985, p. 2 I1tituto Central di Statistica. Le Reaioni in Citre, 1985, Rome. I1tituto di Ricerche sulla Populazione. The Italian Population: an Overview; Demoaraphic Profiles or the Italian Reaiona, June 1985. John Paul II, in Oaservatore Romano 5 October 1984 (Vatican newapap1tr). -'-Malan, N. Perch reeiste? (Why resist?) in Il Giorna1e Nuovo, 9 Nov. 1975, p. 1, cited in "Diritto di Morire?" (Riaht to Die?) by Giacomo Perie, Agiornamenti Sociali, Decemb$r 1975. Manni, c. "La battqlia-lquotidiana della terapia intensiva" (The daily battle or inteneive therapy), Oaservat~re Romano 20 April 1985, p. 6. (Professor Manni is director ot the Institute of Anestheioloa and Reanimation or the Catholic University or the Sacred Heart, and or Gemelli hospital. Merli, C. Director, Institute for Le1al Medicine, Rome. Personal communication. Mori, Maurizio, fellow at the Institute or Philoophy and Socioloa ot Riaht, University of Milan, 1985 personal communication. Mori, Maurizio. Su alcuni problemi concernenti l'eutanaeia (On some problems concernin1 euthanasia), Tranaizione 3/85, and Contributi per la discussione, Center tor Research and Trainina in Policy and Ethics, Milan, 6 November 1985, Euthanasia, a clarityin1 analysis and ethical proposal. (1985a) Natale, Prot. M. Creacita. "dell'Invecchiamento e Implicazioni Socio econ0111iche dell'!mar1inazione dell'Anziano. Il Nuovo Ball. di rarmacoloaia Clinica, May-Auauat 1981, 171-184. Oeaervatore Romano 20 April 1985, 6-7. Series at.articles under the aeneral headina of Euthanasia, Culture or Death. Piua XII, Diacorso ai partecipanti al IX Conaresso della Societa Italiana di Aneatniolo1ia, 24 February 1957. Pius XII, Tre queetiti reliaiosi e morali concernenti l'analaesia, 24 February 1957 (1957a). Piua XII, Risposte ad alcuni importanti questiti sulla 'rianimazione', 24 Novebmer 1957. (1957b)
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n .. ,.... ;' tv Alao consulted in preparation of this report, thouah not cited d1rectly in the text: Banaert, Diederik. Il diritto a una morte serena (the riaht to a serene death). In the Netherlands even the Christian Democrats are in qreement. Parliuent will decide soon. Il Mesaagero, 15 September 1985, p. 25. Wojtyla condanna l 'eutanuia. I un crimine. (Wojtyla condemns euthanasia. It' a crime. ) La Repubblica, 22 October 1985, p. 18. Marroni, Stefano. Intro cinque anni rivoluzioneremo la sanita romana. (Within 5 year we will revolutionize Roman health care.) La Repubblica 29 Dcbr 1985, P 28. Saulino, rel ice. Arri vano ali aumenti di Capodanno. ( The increases ot the New Year are comin1.) La Repubblica 27 December 1985, p. 3. Dipartimento Attari Sociali e Cul turali, Camera dei Deputati. Servizio Studi. I Trapianti Terapeutici, Feb. 1983. Iatituto di Ricerche sulla Populazione. Un quadro di sintesi della situ azione demoaratica italiana. June 1985. Comitato Nazionale Italiano sui ~roblemi della Terza !ta . Rapporto sulla Condizione de111 Anziani. No date. Camera dei Deputati.~ Il Disepio di Leae per la Finanzi~ia 1988. ~raalaaai, Silvano. La Condizione Anziana. Civitu, 1-2/1984. La Politica per 111 Anziani. 1/81, unpublished. Gatteechi, 0onatella. Servizi Socio-Sanitari e Diteaa deali Anziani. Rome: La Nuova Scientitica Italiana! 1980. ~Pavone, Marisa and Francesco Santanera. Anziani e Interventi Asaistenziali. Rome: La Nuova Scientitica Italiana, 1982. I Diritti dei Malati e dei Morenti (the Riahts ot the Sick and Dyin1), mimeo trorn a Protestant Commission, 6 Auaust 1982 (chiese evan1eliche valdeai e metodiste).
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,,,-.,''' APPENDIX A: National Health Service ') _..., =) \; .., ,:, . ) ~.J --'~ The national health service constitutes the entire health structure which the State, the reaiona, the localities place at the disposition of their citizens tor the care of their health and prevention of disease. Inscription in the SSN (NHS) is automatic ror all citizens already enrolled in mutual.laid entities and thus in possession of a card. Citizens however who have never enjoyed any form ot ueistance, are enrolled in the SSN by chooainl a doctor ot choice. The citizen who needs a medical visit ahould ao to hia own doctor ot choice -to his clinic/ottice or in case ot need in a home viait. 'nle ambulatorio (clinic) should be open for 5 daya a week, with openina hours that ueure adequate care. On Saturday it ia not obliaatory tor the doctor to open the office, while he should deliver home viaite until 2 PM. Home viaita are also tree, but subject to the follQwin1 rules: if the request is made before 10 AM, the doctor's visit IIIWlt be made durina the day. In the cue in which the request is d later, the visit must occur before noon of the followina day. The doctor of choice is obliaed to make a home visit, also on Saturday, it the request is made before 10 AM. From 8 PM until 8 AM weekdays and rrom 2 PM to 8 AM Saturdays and Sundays ( i e. till 8 AM Monday) for ur1ent cues a Service of Medical Guard is in operatiQn in every area of the country. Also in these cues the care is absolutely tree. Hoapital services: where the citizen needs hospital care, on the propostof the carin1 physic!an and providin1 the enrollment card, he can obtain care without char1e in: public hospi~als, with Juat the referral by the attendin1 physician; in institutes and licenced nursin1 homes (licenced by the Re1ion) with the referral ot the attendina physician and the authorization or the USL (local health unit). f Private licensed Nursin1 Homes (not necessarily for qed): for these places the expence of a bed stay is the responsibility of the citizen and he can request partial reimbursement, in the dep-ee established annually within his reaion. Users must 10 to the USL. Specialist care: In cue or specialist visits or diaanostic tests (analyses, X-rays) the citizen can 10: to the policlinics of the mutual entity (former entities, now USLs), to the specialist offices or all public hospitals, to the licend specialty clinics. In the tirat two cases all that is needed is the request of the physician of choice and presentation of the enrollment card; no other authorization is necessary. The request of the phyaician ia not necessary for the followin1 specialist visits: pediatric (for those who do not already have a pediatrician ot choice), obstetric anecol01ic, odontriatric. It is possible to report to licensed specialty clinics when other structures are not in condition to satisfy the request in a short time. MedicinN and. pharmaceutical help: Only the doctor of choice and the specialist can preacribe drup to the citizen who requests them or after a medical visit. The prescription should be placed on a torm and can be used within 10 days in the pharmacies of the Re1ion indicated on the prescription. Some of the drup coercially available are furnished tree to the citizen who presents a medical prescription. For other medicinal specialties, however, the user ia obli1ed by law to pay a small sum directly, the so-called "ticket", in proportion to the coat of the medicine.
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., f .r. I J ... \_/ : ' What is the USL ( Uni ta Sani taria Locale) : USL means Uni ta Sani taria Locale-~ : .. It means a complex ot buildin1 (policlinica, hopitals, conauitin1 offices etc.) and peraoMel who work there (doctors, adlllinistrators, pHarmacists, nursu, analyats etc.) who can turniah the citizen a complete, free uaistance. Th USL depend directly on the individual or uaociated Comune. All Italian citizens preent in the territory ot the Lazio (Rome) reaion have the ript to be usisted by the Sanitario Servizio. Choice ot the Doctor ot Choice (literally, doctor in whom you have trust): To obtain many ot the services ot the SSN the citizen muat chooe a doctor ot truat. ; --t-: ; ; ---:.----......... .. ... ___._ .. ____ .... ...... ., .. .. ....... ;. ,I : I : .: . .,
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__ __ 0f COPY AVAILABLE APPENDIX B: Health: Goodbye Services; Nearly Everyone of Us Will Pay \.. Pae Sera Monday 30 September 1985 f) -, ) ~ ') :) ,. From a tull-pqe article on the Battle in the Senate, be1iMina Wednesday, includinl education, transport, health etc. Dear Tienaaocelo, our family doctor. Because his aervice will be one of the few tree aervicea that the state will offer to the citizen. The health aector in tact 1 the moat hit by the spendin1 cuts predicted tor the 1988 budaet. The State in fact, will linu. t 1 ta free intervention only to thoae pateinta in hospital, to the fMily doctor, and tor tho with a fuily income very low, at the limits ot survival, that ia 11 million lire a year (about 850 thousand a month). The certification of income, will be conducted by the city aovernment which, will be called to a co-responsibility. Above 11 million, citizens will be asked to put their heand into the wallet: a prescription will coat 2000 lire (about double the present-day ticket), while tickets for medicine, analyaia, and thermal cure and specialists will rise to 2s. But that' not enouah, the health union and the re1i0ns, in fact -will have the riaht to apply supertickets for the upper income cate1ory, for both direct and indirect servicH (the former currently receive servicn without _rayina, the latter pay and are then reimbursed) SANDA' -Assiste11ia.addio pagheremo quasitu~o ,_-
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/. "'\ i"\ .. By Law, Theae are the Duties of the Uni ta Sani taria Locale ( Rictitat -of --~ : j .-; -:~ the Handicapped), from La Repubblica October 1985 ,. With medical documentation, parents can request recoanition of invalidism ot a minor under 18, which carries the ri1ht to a) total exemption for payment ot medicines and care ot the siclmeaa, b) free provision of proa thean, orthopaedic shoes, wheelchairs, and whatever technoloa is currently available to stimulate the capacity tor recovery or better ment ot the quality ot lite. The law alao auaranteea: physiotherapy and apecialiat viaita (home vieita it the handicapped cannot walk), tree SWIIINr tripa. In cue ot total invalidity, the fily hu the ript to a monthly check ot about !0,000 ($150) until the child is 18, when it chan1e over to a social pension. M>ili cl( ,. I .... ar :.;~ .. -...... .. ~-,~-,-,.. ~--.... --, 11 -..... : .. .. r. -~ . : . .. ... : A ......... .. ..... . .. .... "r~ .. -~-~. .. ~---~llsl ---~~Iba-........... : ., .... pf -.: .a iii -> It I .. .._ ,, ...... 9 ...... ..... ..... ........ 22 irt C Ctr t l'IIIIM1uct tJi ..... pqp I (Ulr~wz : ... ,. ......... .',. UILIII ...... .... d n 11~-. an .. " _____ .. ... --,-vi ala...._. .. ,. ...... lin DI ..-QaJa J1 D ... -----~I I Alt oi Ilk .Jal I.,.... .. --falltli ,,, .. -&lie kl1 I& Ma.11 ... u.aandd 'lili&. al)_. ._ ... _..._,a _. .a In lalli-- .... I I I 2) fDI I a_. .. 1 ...... ,; I t ...... ,. ~ a ......... ... 111 .. k I . .. J 4 LL; Ca I aOJFua , ss .... rs ~..-... ... -. .... -~ .,. ... . ............ 1111. .I I 20 111 .,...., ., I ldhMo 1, ..... .............. 11 ...... CIiia I i_(lel .... _._..,.._ ... ......... -...... 1111111a 1 n re .. rs : .............. J I I 1 UIL ~--- ,,, ... 11 r : n ... .. ....... t ., LC# d ca '--JO
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APPINDIX C: Therapeutic Tenacity: the Cue ot Calvino In a recent example ot the irreversible coaa ot a tamoua person .. (writer Calvino), public statement acknowledlina the irreversible atate nonethel-pointed out that the medical teu hu never ceased ,. an 1mltall1: in ita ettorta to save him." (Italo c,1v1no ia at the encl of hi lite. Hla heart, ettectively continua to beat, but the brain ot the writer, at the end ot another dramatic nipt, 1 alidina toward a alHp troa which he will never reawke: ''cou irrevraible," la tbe verdict ot th doctol'tl who, it 1 not rhetoric to aay, have not ceued an inatant to tiaht to aave him:) La Repubblica 18 Septber 1985 ~npy AVAILABLE ,~I
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}f; .--:r APPENDIX D: The Man of Civil Riahta: Fortuna is Dead, Father of the Divorce Law He never ceued to fi&ht, to convince, to battle. Everyone will say of him, now that he's dead, that he was the father of divorce. True, but he was sothina more, he belonaed to that faction of the Italian left which, atter havina taken up arms qainat fascism, then left he Communist Party with anaer and bittern tollowin1 the Soviet repreaaion of the workers' revolt in Budapeet in 1958. Fortuna bee a socialist and "nourished" the liberal-radical sector Even in the aocialiat houae he had his probl-. The PSI rained aparty structured in the Marxist-Leninist style, aaravated by the sue type o~ para-Catholic morali that en encwabered the Coauniat party the left wu frozen by ri tea of ortho doxy. Thua to be in favor of dicroce, a layman, anti-clerical, waa to live in a condition of terrible discomfort. Fortuna was elected deputy in 1963 and the law which introduced divorce into Italy wu aQproved in December 1970. Three years later he proposed the firat law to le&alize abortion. By then the door to civil riahts was broken down and subsequent referenda to abbro1ate them failed. On the wave ot the divorce victory of 1975 Italy experienced a turn to the left with the beaiMina of that tumultuous redistribution of consensus that redesiined the entire Italian political scene. '--.-~t the be1innina Loris Fortuna wu alone, or nearly so: intellectuals of the liberl left supported him. Divorce wu seen ne1ativeiy not only by the Catholics; many communista and a aood aprt ot the socialists also frwoned on it. It was in style to justify this aversion by referrina to the terrible danaer that it would traeture the country. The major parties, however, had to recoanize that the present-day country was 1aloppin1 alon1 by itself with the worker and student movements demon atratina how wide wu the 1apb etween represented and representative. Thus it wu that the divorce law passed, but as a product of neaotiation, compromiae, exchanae and some underhandedness. The country did not break apart. The abortion law wu no lesa dramatic; it raised different ethical iaaues, more qonizin1 but it also went alona. The bil parties of the mu stopped arwnblina. Peasant-Mediterranean Italy becae forever industrial-European Italy, also thanks to divorce and the nearly-solitary battle ot Loria Fortuna and his few companions. The article continues to outline his many other Parliamentary roles, but not a wrd with reference to his recent proposal on euthanasia. La Repubblica 6 December 1985, p. 6.
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APPENDIX : Public Opinion on Euthanuia, Active and Passive -~ . :') ,al .\. _; j From "Unplua the tubes is an act of humanity": the majority of' Itali~ and Germans are Convinced, Mesaagero, Sunday 15 September 1985 ( a half paae on Euthanasia, complete with The Karen AM Quinlan photo and the ujor article on the i111111inent bill in the Nether lands. ) Tranalation only ot pas-es marked in pink. The aoocl death ( literaly "sweet" death) Every culture, since forever, hu debated this proble which poses queatione for the conscience. (Then aoe on to 1ive example of the Cwaa in Panaaa, who kill their sick with poiaon, the old and sick Polyneaiana who are stranaled, etc. and the Greek meanina of the work."euthanasia" -quick and euy death the meanina of mercy death bein1 a distortion. Professor Barni, president ot the Italian Society ot Leaal medicine, elsewhere cited in this report, ca..enta: It's true, the lawa of all countries and the medical associ ationa condemn. euthanuia as contrary to the principles or the medical profesaion, ,but the uncertainty or the leaal and medical limits of' tretment of the terminal patient remains unaettlin1 for the medical proteaion and for society." A Disturbance tor the society. It is illustrated by the debate underway all ot the world on two aspects of euthanuia the puaive which conaiata in interruptina medical care deatined only t.o artificially prolona a lite (illuatrated by the exaaple ot a sick person who lives only becauae attached to an autolllatic respirator) and-~ "active" which prevent the administration or particilar medicine sou to accelerate the death of the incurably sick. All over the world initiatives hav~ been taken tor a reauJ.ation of the "morte dole" but have not arrived at an obliaatory arranaement. The debate is in the phaae in which it is concentrated mostly on passive euthanaaia which finds public opinion ever more favorable, however with many reservation and cautions. It ia illuatrated by two polls, one in Italy and one in the German Federal Republic. Accordina to the poll or a research firm in Trieate (SWG), 7 Italians in 10 are apposed to the therapeutic continuation, that ia are not in qreement with the doctor who continues to provide care tor the sick even when there is no lon1er any hope. In practice, 7 Italians in 10 say yea to puaive euthanasia, left to individual conscience. Six Italian in ten, in contrut, are oppoaed to active euthanuia, that ia to 1ive death to the sick one who uka tor it All over the world initiatives to reach a reaulation are beina under taken. In the USA and the Netherlanda in particular. It is also bein1 talked about in Italy where the sociali1t Lori Fortuna presented a propoaed law on passive euthanuia. "Good death doean'T mean aood h011icide," Fortuna said, "no one wants to authorize killina, I only want to have forbidden the prolon1ation and persistence ot therapy (extenaion of therapy). With my proposal I want to defend the dianity or every poor human in the terminal phase. For the Catholic Church euthanasia is and remains unacceptable. Giovanni Paolo II, speakin1 to representatives or the Italian Society or Aneathesioloaista, invited the doctors not to render themselves accomplices with thoae who practice ti la morte do lee. ti The Church adllli ts, however. that it ia not necesaary to maintain articiticallly alive a body which, by natural causes, is destined to be extinpished re1ardless or any care. 33
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APPENDIX G: Not .. troa "The Patient's Bill of Ri&hts", Corriere della Sera, ThuradQ 3 October 1985 How patienta and their families are rebelling against the "hospital powr." Lipria Rqion approved ita new law which protects them; reatana Veneto, Peiaonte, Publ~a, Abruzzo,CAllpania auarantee the continual presence of parenta next to their babies; But, notwith tandina thi poeitive facta, the situation remains difficult and ttie atateMnta of principle too often reaain just words. Saaeane baa counted how many are the riatita of the patient, in hospital and out. fl'ley are, in the present historical 1101Mtnt, 30 or 40. More or 1-. I have before the Bill of Ri&hta of the Patient in Liguria, pueed 26 April 1985 There are many reaiona that have similar laws or in which they're in advanced state of discussion -naturally we're talkina about Tuscany ( Florence the capital) Piemonte (Torino) laila].ia Roaana (connunist-controlled Boloana) -all in the north. Th.a Elderly: In c0111110n in these lawa is that they auarantee the presence of the parents next to sick children. Specific ri&hts are spelled out for three other cateaories: woaen, elderly, and chronically ill. To be a --.n, in a hospital, is in fact a permanent condition like a chronic sickness and of weakness like that of the elderly. ,._ Where there are no reaional laws, Patients' Bills of Rights are solemnly proclaiaed, froa the 1rasaroota initiative; there are 30 such, many of th auton0110usly signed by the local authorities, such as in Lecce, Varese, Rome We're talkina about "Bills," laws and non-laws that are founded on the touah experience in wards and clinics, matured in the lona lines in front of the USL (health union) window, waitina for the documents on principles of the most diverse international or1anizations, distilled by 60,000 letters which in the 5 years since its foundina (in R011e 1980) the Court for the Defence or the Rights of the Patient hu received, which in turn is part of the Federal Democratic Movement. (IIFD), which wu ounded by the sociolo1ist Quaranta,.Caroleo, present secretary 1eneral, and Giovanni Moro, son of the president or the Christian Deaocrata killed by the Red Briaates. Today the "Tribunal" (which isnot a tribunal (althouah myths and rites please people, uya Quaranta) are informal or1ani8118 for denouncina, are not concerned with :f'ollowina an isolated cue as in transforming it into a case study, and exaaple, "political" that is, thus into material for one of' the Billa for the Patient, which may come together. The Movement believea that less and leas, :f'earina a danaeroua crystalization into a inale national Bill, for which, in truth, a aovernment co1111ission in the lliniatry of Health hu already been constituted. ,.,,,. history of the International Bill of' Geneva in 1948. World Health Oraanization's Rules for the reaulation of clinical experimentation on huaana. 1972 Bill for Patients by the ANA. / In 1976 the Council~ lurope 1ot movina and proclaimed the"Reconuaendation number 779 for the Protection of the Riatita of the Sick and the Dyina." A luropNn Bill of Riahts of the Sick was aolemenly passed by the European Parliaaent at Strasbura 19 January 1984 after which the Ew-opean COnmission of' Private Hospitalization came out with its own Bill for the REspect of the Huaan Person in Hospital. 37
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9) It you see cockroaches, take them for hallucinations. In fact, they 10 away. 10) Comtort the moribund who invariably is placed in the bed next to youra. 11) Even it you are convalescina, keep your pyjamas on (if not, how would the nurse who pases know to aive you orders?). It is also prohibted to leave the hospital tor a brief Sunday vacation; you'll~ l~e you bed place. 12) Get used to undreesina in public, to usin toilets on stilts, and to doors that don't exist. 13) Prepare yourself for the violent noises and the sudden, unjustified puttina on of liahts" (paraphrase from the "Bill" from the Umbria reaion, 1981) Luciano Girotto of the Russell Group for the Defense of the Citizen (who has an advisor in the city aovernment) "My wife died of a brutal illness, screuina because of the atrocious pain, while under her windows the cars of the visitors were trumpetina and the motors of the nurses who were 1oin1 off duty thundered ferociously." 14) Don't even try to rina the call bell, the niaht liaht, the viait li1ht, or to set up the screen. (from the "Bill.", Lazio Rom-,; 1983) 15) Accept the distinction ot aender, renouncina any respect aa a woman (Council of Europe Recoendation 1984). 16) But above.all recounce the ri1ht to information. It is the most serious and common cause of discomfp~t for he who has to furnish it to you. From the information about why you are here, to when you will lave, of what they have administered to you, of the plan of the hospital. Keep quiet, better to know nothin1. But this subject, for its importance, merits a discussion by itself. Before cloain1, however, this section or our investiaation, we must rember that even in this field there are noble exceptions, to whom 10 all our rispect. The respect that is always due to the minority.
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