organ_trans

organ_trans - CHAPTER 13 . . . . d Allocation ofArtt 61:11...

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Unformatted text preview: CHAPTER 13 . . . . d Allocation ofArtt 61:11 on Transplantable rgansed The God Committee ' ' ' 5 us Io L' ' x rimental treatments are sometimes scarce, Ed thwairplfustraw IFe-savmsll Petin limited medical resources. Transplants e org“ a sense an the ISSUEIOFa- moth; example once was hemodialysts. which ismu‘lein the “(h scam'lty‘ anOu case study in this chapter is a lay committee 113W commit- artificlalkrdneyl' ASH-assigns and Policy Committee, dubbed the I“! dimm— lm‘ me se'atte: hich patients inrenal (kidney) failure would resettans our dis— mflxgxdwmg‘ patiems woum live-fitegfidm'rlphngflscfieijisgvilved include t are 15 n u . I cuisillrll;agizfzfiefglplilearl‘tgpgnmerit but also informed consent and certain I'IU aspects of organ donation. BACKGROUND: ORGANS AS SCARCE RESOURCES he kldnE remove loxll‘llt accumu sled b nor-111.1 Ce u ar rm: abolism 1n the 'l )5 ' l. 3" 1 ll 1 l -' ' Elite kid- ' ' less the cleansing function 0 Whe Ll‘l kid 5 completely fail, un I b1°°d_l 23w replrafgd, toxins will accumulate to a lrétfiltlallulpevpcl’r the kidneys: I. ma Is 5:11 sis (literally "tearing blotxi apart lcan su I 1&5 {tubes} Where a Hem bl [yd from the body and sends it though cannu mundmgmmtm; remlwes 0kirk: membrane removes toxins by osmosts into a stir a1 failure 5 senmFem-[lea need blood returns to Ihe body. Today, an adult 3:: times a wneedeek m?“ m'el a? evor simply dialysis—for about 4 hours 0:“: ts is durum in hemo‘i'a )llli'cian Willem Kalli [whose work on artificial pr dsm 1m. K01“ (Shall-fr 1:2lfirlwented the hemodialysls mgchifill‘ptglpoieeflfiéx out of the bald? um a conveer ma] Pump from an ally :i‘alysis machine presean a dauntrng . ' ' I ' 98f I1 and no return ll pita glizlapétsnfiécrullid a new comm-[on had to be made item?e m ‘ ' ould Pmblem" Everyd the Patients arteries and veins. Because each arm)" 0‘ “Em c - |d be thecanmllfiSaI‘ .| big sites [or mmlmns wou h. fly all the aval a be used only "110% even a exhausted- 330 (hunter-13 Allocalionol Artificial and TransplanlablL-Organs 331 dialysis. The potential for tragedy and the accompanying ethical iSsues were not irn~ mcdiatcly obvious, because at first the procedure was only seen as Experimental. Although both 1(0le dialysis machine and Scribner’s shunt worked in the first few cases, no one knew if patients could survive for many years on chronic dialy- sis and return to nonnal life. When it gradually became clear that we had a long- term artificial kidney, the problem ofselection arose. Eng organs for transplantation. Why such problems arise with transplantable or- gam can be seen easily with a little background. First, the base number ofavailable organs for donation has not changed much Over the past decades. despite numerous campaigns aimed at increasing it.’ Sec- und. while the supply drops. the demand for transplantable organs has steadin in- creased. Let‘s look at these two factors—supply and demand—in somewhat more With regard to supply, lees than 20 percent of American adults sign forms agreeing to be organ donors. Various masons explain this. For one thing, young adults notoriously do not mi: about death and thus do not sign donor cards. luctance to sign a donor card is concern about “brain death." (These last turn fac- tors were both illustrated in 1966, in the case of Bruce Tucker, who was African American. When Bruce Tucker‘s heart was transplanted after massive head ' trauma, Tucker‘s family sued because it had not consented. and also because . Tucker had not been legally dead when his heart was removed?) 0f cou rse, even in the absence of a donor card, organs may be donated by the ; Fal‘nily ofadead or dying patient. Hweverthhe family relusesfimerican surgeons 332 Part Three Classic Cases about Research and Experimental Treatments do not take organs and this practice lowers the number of organs donated, though it also reduces the number of lawsuits. One factor that causes many families to hesitate is that the medical team work— ing on behalf oi a potential donor and the team working on behalf of a potential re— cipient may be at cross purposes. A treatment that might be indicated if the poten- tial donor had a chance of surviving—or a treatment which might itself offer a very remote chance of survival—could be contraindicated in terms of preserving organs for donation. For example, victims of head trauma should, for their own well—being, be kept as dry (intErnally) as possible, whereas organ banks need well— hydraled donor organs. Furthermore, suitable donors are mainly young, healthy adults with good or- gans; in practice, this almost always means young adults killed in motor vehicle crashes. Unsuitable donors who are older die in most other ways or have certain conditions when they die. For instance, the many Americans who are l-IlV-positivo and the 1 million with hepatitis B or C can never donate organs. Ironically. successful efforts to prevent motor vehicle accidents: restraints and seats for infants and children, helmets for motorcyclists. a legal drinking age of 21, lower speed limits, and laws and social pressure against drunk driving reduce the number of donatable organs. Safer vehicles with mandatory air bags also reduce the number of available organs. These measures especially reduce deaths among Americans under 40 — the age group most likely to have donatabie organs. Another factor in increased demand for transpiantable organs is improve- ments in transplant technology; another is that as more and more reimbursement becomes availabler especially for elderly patients, more and more patients become potential transplant recipients. Given [he increasing need for donor organs, and their persistent scarcity, it is not surprising that in the United States over 4,000 patients die each year while wait- ing for a donor organ. This imbalance between supply and demand has naturally created pressure for change, but most of the proposed changes are controversial.‘ For example, at least 14 European countries u5e presumed consent: A dead per- 5011 is assumed to be a potential donor unless he or she has specified otherwise. However, presumed consent would probably not work well in the United States, where mistrust oi [he medical system is already a [actor preventing donation—F any attempt to establish the presumptive system here would only increase that mistrust. Mandated choice has been legislated in some states where all adults are re- quired to volunteer or exclude themselves as organ donors at some appropriate time (in most cases, when they apply for or renew a driver‘s license)? There have also been calls for replacing our traditional nonmarket system of organ allocation with a commercial system of selling and buying organs. but as will be discussed later, the ethical problems with any commercial system are enormous. A development which many observers considered ominous was the Ayala case. Abe and Mary Ayala conceived a child for the acknowledged purpose 0f 39' ating a bone marrow donor ior their daughter Anissa; the baby, Marissa Ayala, was born on April 3, 1990, and the bone-marrow transplant took place on lune 4,1991. (In lune 1992 Marissa was the flower girl at Anissa‘s Wedding, at which time bOth sisters were well.) What Abe and Mary Ayala did was said to have already be Ethical can I PM ‘3 Allocation of Artificial and Transplantable 01'5"” do“ w”? and has been imitated since then in a few “1595's and i' Famed 0 step away [ram conceiving a child in order to obtain. say. a donor kidney. Another development which man), People found disturbing was the att to have seth bmmdam d babies declared brain-dead In order to use Orgasi'f For othel. infants. 39 f nrci: of been a actor in attempts to pen xenUgrafisitr;::;agig:flo;§?;:flafoagioman patients, as in the Baby Fat and We cases in which baboon livers were transplanted by a team led by Th Stat-cl. It also explams the pimburgh Protocol to use nOn-heart beating Ca! SEATTLES "GOD COMMITTEE" When Fielding Scribner developed his Shunt, inpatient dialysis cost $20,000 a J.'.lialysi_g,1,\.as Ehmsti” mnsidered experimental, and as with all experimental apm’. '"SUrance companies refused to Pay for it; thus scr'anr‘s limp Swedish Howl-ta! in Seattlc_had to Provide some treatment free. I'he first : or50patiemrsWista_l,tfl}r felt in danger of losing their treatment. Because the co .1. - . - h Swedish Hospital soon told Sex the s of d1alysts was so hlg ms (the hospital also noted a 5}“ 0f beds) “Imam not take any more dial sis patit‘ I . By the"! mo . y hers had a year‘s experience with agmg Problems of Eariigghf’oicgzi":55:26::“9 and they decided that dialysis done as an outpatient Prmediml Swedish Hospital agreed to oversee a1 patient Ingram and in 1962 it began longtermf or chronic, outpatient dial} e DI“Patient dialysis center created at Swedish “impital in 1962 could unis, but mm}, more were eligible; from the beginning, then, there v Pmblemhjn the words of the title of a 54311111131 article, Who Shal cn Not All Can Live?” An advance in treatment had thus created a 5| Proileiioidis'ribmm‘ b d it h b a a of ieavin . ibufion to 9 ea wit y in ii phi‘nnansfor individgutallgggri:ziig‘iigiirplospita1 and King County Medii . fol-Eli'tookan unusual step of forming an Admissions and l’olicy Cpmmitteei: .- i makeq-uciai dmisions about selection Remarkably, this committee consis ifl’PWPle: althoth there was a ,1”, eon on the committee. and although clansonan advise”? committee “bragged applican 5 for medical suitability] -. :25?“ to take the burden of decision Off physicians, since a physician wou‘ 10 5’ Want his or her own Patients to be accepted? The committee, was sup . rePresent the C(Hnmunily and hqd seven members: a minister, a law .figilea iahnr leader a 51m government official. a banker, and the su YSIciansf - - ' . _ . dvisers. The committee in nymol‘lslyl am'llflr wrih dlaIySlS served as a 1? pati applied and additional crite howcv ' ' or, atlents _ too many P Consider whether a candida The committee then began to 334 Part Three Classic Cast: about Research and Experimental Treatments employed, was a parent of dependent children, was educated, was motivated, had a history of achievements, and had any potential to help others. Eventually, the Committee also asked for and considered analyses of a candidate‘s ability to toler- ate anxiety and to manage his or her medical care independently; it also considered whether or not a candidate was likely to use his or her symptoms to get attention. In its deliberations, die committee would evaluate the personality and personal merit of the candidate, the strengths and weaknesses of the candidate's family. and the family‘s emotional support for a patient on chronic dialysis. By its own rule, the dialysis committee did not meet candidates personally. It should be noted that this committee struggled with issues ol distribution in the era before bioethics. At the time, no philosophers were writing about ethical is- sues of allocating artificial or natural organs, indeed, no philosophers were writ‘ ing about bioethics at all.m Nevertheless, Scribner, who had evidently been in— volved in establishing the committee, wrote in 1972, "As I recall that period, all of us who were involved felt that we had found a fairly reasonable and simple solu— tion to an impossibly difficult problem by letting a committee of responsible mem— bers of the community choose which patients [would receive treatmentl." “ In May of 1962 (at about the time when mule built its Space Needle), Balding Scribner went with one of his patients to Atlantic City, where a convention of newspaper publishers and editors was being held. Scribner hoped to obtain pub- lic support for more dialysis machines; but he also described the selection com— mittee to reporters,12 and it was his account of the committee—rather than his appeal for more dialysis—that made the front page of the New York Times the next day.l3 Lt}? assignEd its first woman reporter, Shana Alexander, to cover the story of the committee; she spent 3 months interviewing people in Seattle, and her report appeared in November 1962.“ She coined the term God cemmitlee: to describe the committee playing a godlikc role in deciding who would live and who would die. She also described in detail the committee's criteria, which came to be called the so ciat woth standard and which were seen as implying that some candidates were more worthy than others. According to Alexander, in response to criticisms that they were "playing God,” some committee members argued that if they didn‘t do the choosing, some- one else would (an argument which recalls the existentialist philosopher Jean Paul Sartre, who held that “Not to choose is still a choice”). Other members had pointed out that dialysis was an expenrnental treatment: "We are picking guinea pigs for experimental purposes,“ two members said —"not denying life to othe ‘5 But as dialysis became increasingly safe. this justification would become untenable. In the spring ol 1963, the front page of the Seattle Times showed nine of the cen- ter's dialysis patients with the heading, "Will These People Have to Die?" “ As a re- sult, the Boeing Corporation and the US. Public Health Service offered temporary financing. The next year, Scribner gave the Presidential Address to the American Society for Artificial Internal Organs, entitled "Ethical Problems of Dialysis Selec- tion." 17 In 1965, Edwin Newman narrated an NBC documentary on the Seattle oon'tmittee, Who Shall Live? That year. Congress had added to social security two national medical programs—Medicare for the elderly and Medicaid for the indi— gent—but dialysis was not yet covered under either of them. On the documenta ry, _—W Cha tel'l All al DEA ficia ndl n5 ntab Or 33 p 3 at on m la la plat lr: go n5 5 C . . ongressman Melvin Laird (later secretary of defense States could have a space p ) 55km Why if [he united rogram, it couldn‘t have a dialysis program to save The media shaped all I these events. to Atlantic City, he had been anglini‘lam Al non of It‘s time to bring this story tot exander said that when Sc ' I rtbncr went to get the magaztne with the largest circula— swaz a I he nation,- and the ' ' ' ' ey grecs that Scribner set out deliberawa to get pzbfiiifyffijgfigglldhh . l y, 0 1d 5E pl] IICI ‘ Ll E 8 01 j" C wa C seems 0 ZIVE Sim )‘r g P )" d I b l b l Eh I 11 film to et a £065 l h been I the need for HIOIE dltll 515 machines, and “I2 5831‘ he I a 0 all I )l )r fill 111 “mod to 9 p051? Ihlrl as l t' 51:? Cr Hit a? a totall all! Bl) UE e klnd )l' ye la 0 , Ibn be '1 he ll d bECl'l Y n E O lh of national publicit ' y which developed; h l ' alien;n the committee’s existence, especiafi a frigid that hehad taken "a 1m omak" view. He claimed then that he h y m an ear: y the King County Medical Association [here committee” a d ' ' ' A “am Who wagnlfisipverglhing possible to circumvent it Max:223? gfidamn Viemd a Single Paticif: .aSchner also claimed that Alexander had“ ragtang pa— - _... I I l I - WM? regard to the S c rm she flatly dented, to his face.22 m“ _ it: in t] ' ' " written “(imam the c ry to Seattle flmES, lhls report could not have been ooperation of nephrolugists [kidney specialists) at Swedish lospiaan at C 1Y 0‘ S W)! I E U 0 ' "I l‘ I d “1 Uruvers l {W ah I A l‘ 0 a mg n R! a S, med cm ha 3"“ “0 I el ‘ ' ' were “3mg the Emmi? Tim‘s; y In terms of publlc relations 2" _ as to see“ _ , and these ph sician of-uslrg the media When cmrg undo. Their success may have set theypattcr: failure, t.e., the rule of rescue, ency financing is needed for patients with organ ETHICAL ISSUESt FROM . SOC} TO THE MEDICAL COMfiélSSOR-rfl The Public Arena l‘r'ould also be true in the case of Karen Quinlan m m issues Should be ha , any physicians felt that such eth- 336 Part Three Classic Cast-s about smut-h and I-prcn' mental nutm.s By letting this genie out of its bottle, Scribner began to educate the American public about the many ethical problems in medicine. Different moral Oplnluns among physicians now began to be expressed publicly by scholars. in retrospect, this process was perhaps inevitable: Since ethical issues in medth rte affect so many people so intensely, probably they were bound to reach the public sooner or later. Selecting Recipients Ethical problems of selecting patients remain the same whether the resource to-be distributed is a donor organ or dialysis. In this section, we'll con51der four specific major issues having to do with selection: social worth, systems of distrlbutlon of donor organs, retransplants, and the rule of rescue. Social Woth As we have seen, the Seattle dialysis committee took social worth into account— though the committee itself did not use this term. Medical sociolo- gists Renee Fox and Judith Swamy (who spent 30 years studying the firmerican ex— perience with artificial kidneys and lransplanl‘alion)"" reviewed the minutes of the committee's meetings and described its social worth criteria as follows: Within Ihesc very general criteria. the specific, often matriculated indicators that were used reflected the middle-class ll\n1,eric:tn value system shared by the selec- tion panel. A person "Worthy" of having his life saved by a scarce, expensive treatment like chronic dialysis was one judged to have qualities such as decency and responsibility. Any history of social deviance, such as a prison record, any suggestion Ihat a person‘s married life was not intact and scandal-free, were strong contraindications to selection. The preferred candidate was a person who had demonstrated achievement through hard work and success at this jubrwh'o went in church, Joined groups, and was actively involved in community affaIrS. Some critics have argued that social worth should never be used as a criterion, because any such standard implies that some people are worth more than others and is therefore inherently unjust. Immanuel Kant, for instance, would oppose any social worth standard; his ethical philosophy would seem to entail impartial, ran- dom selection by lot, say, or by drawing straws. Two severe critics of the Seattle committee—a psychiatrist and a lawyer—remarked: The magazines paint a disturbing picture of the bourgeoisie sparing the bour- geoisie, of the Seattle committee measuring persons in accordance with Its own middle-class suburban value syslern: scouts, Sunday school, Red Cross. This rules out creative conformists, who rub the bourgeoisie the wrong way but who histor- ically have contributed so much to the making of America. The Pacific Northwest is no place for a Henry David Thoreau with had kidneys." George Annas, both a lawyer and a biocthicist. criticized the Seattle Committee-for preferring housewives over prostitutes, working men over playboys, and. screntists over portals.”a _ 0n the other hand, in 1969 the philosopher Nicholas Rescher argued, in a clas- sic article. that the Seattle committee had been just in using criteria which included Chapter l3 Allocallon of Artificial and Transplantable Organs 33? social worth.” Rescher favored considering life expectancy, number of depend- ents, potential for future contributions to society, and past achievements. {Less controversially, he also supported screening candidates for medical problems that were likely to make them do poorly on dialysis, since otherwise dialysis machines would be wasted.) He suggested that such a selection system might be based on points, with ties broken by a lottery. Annas also argued that some criteria of social worth can be just at some stage of the selection process, though he says that justice requires these criteria to be con- sciously [emulated and made public. That is, if one ruleis going to be "always pre- fer housewives to prostitutes," this should be explicitly defended. Private rules allow discrimination based on race,sex,c1ass, or wealth. in fairness to the committee, we should note that dialysis at home soon became an official goal because six patients could be supported at home at the same cost as a single patient in the hospital. That being the case, at least two aspects of social worth loomed large: the psychological support of the patient’s family and the pa- tient’s own attitude or capability. A passive, uncooperative patient can usually be handled adequately in a hos— pital setting, but not necessarily at home. Fox and Swazey, for instance, devote an entire chapter to the case, around 1969, of a Native American patient named Ernie Crowfeather. Ernie Crowfeather—a criminal, though a charmer—received dialy- sis for 30 months but refused to comply with the medical regimen, hated his qual— ity of life, drank, imposed his childlike needs on the staff, and finally turned down further therapy and died.m in selecting Ernie Crowieother, the committee had ap— parently made an exception to its standards regarding patientsr attitudes and ca— pability; if so, the point is this: Was use of dialysis for this patient worthwhile, when it might have saved the lives of Mo or three others? The issue of social worth has also emerged with regard to liver transplants, though in this context social worth can be particularly hard to disentangle from medical criteria. The liver is by far the most expensive organ to tra nsplanl: The so rd gory calls fora highly skilled team and takesa long time. A significant fact is that the most common cause of liver destruction, or end-stage liver disease (ESLDJ, is alco— holism; when alcohol is a factor, the condition is actually called alcohol-related with stage liverdiscnsetARE151J31. in the]99(}s,a controversy arose about whether patients with ARliSlD and patients who were nondrinkers should be equally eligible for liver transpian ts. This is partly a medical issue, of cou rse, since it can be analyzed in terms of which patients will probably benefit from such a transplant; but there is also an element of social worth. Isanond rinker more deserving ofa dtinorlivet‘? Can someone with ARHSLDbc held blameworthy for the loss of his or her liver and thus undeserving of a new one? Would a drinker keep on drinking, thereby destroying the new liver; or would drinkers be transformed by receiving the gift of life? In the case of liver transplants (as in certain other medical situations), there is also another issue: Con candidates be excluded on the ground that they have vol- untarily risked their heralt‘l'tl“11 Willi ARESLD specifically, this question is compli— cated by disagreement over whether alcoholism is a disease (and thus involuntary) or a self-inflicted voluntary behavioral pattern. The disease model of alcoholism has prevailed for some time, but it has recently been attacked by the philosopher Herbert Fingarette.” l' I'lhree Classic Cast-s aboul Host-arch and Experimental 'l'ieiilriients 338 .u In 1992 two teams of clinical medical ethicists CDl'lfllfhE: t;ij ‘ ' the h sicians Alvin Moss and Mark Seigler argue It a .m trans Lam Chums“ P lyver frilurte since there is a dire shortage of livers 11' {pin-"é usuall)’ caugz'xlrism is likely among alcoholics, patients who develop “:an at a- and 5mm rent I lt-of their own" (that is, nondrinkers] should get livers cap“ w‘thmugb :‘hlzg‘iLD—wliose condition "results from failure to. obtain treph dz”:- llffilcgllblism "3’ Two medical ethicists at lhEBErliVEffiltgoair:fil;:fl::;ent de- ' ' I ' n amin, writes ir: pll‘Ilomidhgergzidfiorldgl‘nldligiflr alcoholics should not be blamfdnio; Endinin hctlhave satisfactory rates of survival after a liver transp a . ['1 r Distribution Systems and Waiting Lists A second issue lrl‘fll! 53:13:31:pr ' ' > of distribution and how candidates are hate in s m and DI- lems Is SYStIKerPES no real system existed for distributing donated orga ., were F“ their the available in one medical center or one region of the count-132d the fizl‘lesvflzlysegl‘a-iared with other centers nationwide. Svme flztpfsaengrgzsgflu had ' I ' iirdonor or anstobeused elsew erea . t “is? otf 3::wldilptbgram. did got pursue organ donors :Iggretenvcly.Ta k Force on a lgE| rigs; the National Transplantation Act (19st) and the fedferao in Sharing Or YT ' |antation {1936} had created the United Network or blrghEd a stan- s'fln 1lleviated some regional competition. It also esta is _ b0- (UNQSI- ' -l‘m‘lor deciding which patient will get the-rial availabl‘l-e orgapfiical ‘fjaredfithligghlack of standardization had made this decrston a signi icant e 01' u Pmbkm- UNOS deals only with candidates who are already in the system. Howemd when applicanu; get onto waiting lists for donor organs regatmia Thu-showy an lrna 'ne that you are goingtodic- ifyon don‘t get an organ. yo: Pressing 15533. magi “ems Want Ihcsameorgan [or thesame reason. Burgess-th know than O ne inpasa Pittsburgh or Houston has received an organ Spse to hear that swift: rt' h; suyrjgeon and therefore got onto the right list. 1t 5 on; rigged becatfso you‘re in a life-threatening mfldlllnel"; bstgcltlitit:t:nlrii;ceirn from x ' \ ' lse manag - that you are going to die because someone e 0‘ 3m“. " ll vexin pmlJlem l5 the practice of iimltiplr listing.” some PallE‘T‘lr-t‘t: A“ es-Pmla if lnlfi‘lt‘l‘lls with surgeons at more than one transplantcei OH Set lhcmhclvcs - worked up at each; but only people who can take time for and have; Ednfbfloid to travel, and have generous medical plans can arrangc ‘ral if'nmurlfi‘p‘lgruétcnfgs in this way. For a Fall??? stag-cud, ‘ ' ' - O Flt ‘a l , I , list??? “blob: T‘lft‘: fldfdtffdf‘lmlfizt;ath One criterion for receivtng i;hfi;\'ltp|:: tlpk' .fi‘ngiit ‘ FHA candidate must be within the area of the transplanct :3) can Iagareghisiers at half a dozen such centers (say. in southern a I or significantly increase the. chance of being selected. I 1990 New York became the Multiple listing is generally permitted, butin Ju yh _ ,ha ban} In 1992. some f'tst state to ban it (New York is still the only state wtt suc before ONCE that for I giant‘s who were then multiple-listed argued in a hearing h “h; had a right bidding the practice denied them autonomy. They maintained t a y 3: - side-ration, for inslance. ._ gentlyin need—patien ..——————-——_.“ Chapter 13 Allocation of Artificial and Transplantable Organs 339 as individuals to choose their own physicians; that is, a ban on multiple listing would curtail their liberty right to contract for medical care.” There are two powerful arguments: against multiple listing. First, a primary at- tribute of a just medical system is equality of access, and the use of wealth to bump the line violates this norm. Second. multiple listing compromises the entire UNOS system because some people are getting listed above others arbitrarily. UNOS should be impartial not only in dealing with ca ndid ates who are already listed but also in the actual process of deciding who gem listed. A similar problem surfaced in the early 19905, w didates for neonatal heart Iranspla nts were being identified prenatally and then be ing placed on waiting lists immediatonr while they were still fetuses.” Because time accumulated on a waiting list gives a candidate extra points. such a practice would often: significant advantage. In this case, prenatal listing was made possible by the ability to diagnose hypoplastic left heart syndrome [HM-IS} in utero; but such early diagnosis is not uniformly distributed in the United States, and early listing of babies diagnosed in utero seemed unfair to babies who were not diag- nosed until birth. Moreover, fetuses with HLHS remain relatively safe while they are in the womb. whereas at birth HLHS babies are almost always at great risk and are in NICUs. For these reasons, UNOS changed its policy in J'une 1992 and put fetuses on a separate list from babies. UNGS also decided to allocate a heart to a Fetus only when no baby could use it. hen it was revealed that can- Retransplants A third issue in selecting recipients is raised by retransplantation. Since Ira nsplanled kid neys and heartsare often rejected,a retransplantis often nec- essary. in such a situation, the question arises whether a patient who needs a sec— ond {or third) transplant and a patient who is waiting for a first transplant should be treated equally. or whether either one should ta lre priority over the other. This is a complex matter. In the UNOS system, patients waiting for retransplants are treated the same way as first—time patients. This may not lead to the best possible outcomes. Consider the following statistics for heart transplants and retransplants from October I, 1937, to December 31. 19913“: Recipients Orioyrm survith PM.) First transplant 4,830 31.6 Retransplant 86 56.? These figtlnts indicate that retransplant patients fare much worse than first- transplant (or primary-trrtrtspfmtt) patients; the reason is simply that retransplant patients tend to be sicker. If this were the only consideration, UNO‘S shonch prob- ably give first-time patients priority over retransplant patients: That would maxi— mize survival per heart and on utilitarian grounds would seem to be the only ethi— ca] policy. However. statistics like these are not the only consideration. One other com is that it is precisely the sickest patients who are most ur- ts who are less sick may be able to wait a while. 340 Part Three Classic Cams about Res-witch and Experimental Treatmenls r. Whatever might be argued about hypothetical or statistical cases. a transplant team in real life develops a bond with a patient and thus finds it extremely difficult not to use an available organ for retransplant to save that patient. This is understandable: The medical team has worked very hard—Potten over many monthsFto save the patient’s lifer and when an organ is rejected. the team members do not want tobe forced by some system of regulations to stand back and watch the patient die while an available organ goes to someone Onrnent; physicians emphasize else. In fact, medical staffs see this as patient aband their emotional attachment to such patients and insist that they cannot ethically abandon them. More simply, a retransplarit palienl is personally known to the sur- geon and the transplant tcarn, whereas a new patient is only an abstraction. 1t is true that medical ethics cannot ignore human emotions or the intimate re- lationship between patients and physicians. 0n the other hand. it is reasonable to ask why identified patients should take priority over new patients: A new patient may be just as much in need, just as likely to benefit, and just as meritorious. It can also be argued that "patients who are better at forming relationships with trans- plant teams"” will be favored if the medical teams are allowed to exercise their own judgment. We might feel that if one patient has already received a donor heart, it is time for someone else to get a chance; why should a first-time candidate die so that a retransplant patient can have a second [or third!) donor heart? Kant would certainly favor universalizing the rule, "Each patient gets one organ before anyone gets two,” Some critics argue that transplant centers not only for emotional reasons but also because they are evaluated in terms of post- transplant survivalrates—-the centers are not required to report how many patients die on their waiting lists. ‘In addition, their medical criteria may be contradictory: in selecting candidatesr these centers first maximize the chances of survival by em- phasizing him-d and tissue compatibility; but then, by favoring retransplant pa: tients over first‘timc candidates. they fail to maximize survival. This whole issue is highly controversial within transplant medicine. The case of Ronnie DeSillers. who received three liver transplants (at a total cost of over .‘Sl million), caused very bitter feelings among physicians in Miami and among patients on waiting lists for liver transplants. in 1993. Danny Canal of Wheatom MD received three quadruple organ transplants (the first due to multiple-listing]. Perhaps one reason why such enormous resources were devoted to him was that he was an identified person who had a relationship with a medical team. Should such identified relationships be allowed to determine who will rec eive a treatment? It is perhaps because of this question th There is also the human facto are biased in favor of retra nsplants at the issue is defined as a matter ofjusticc. th problem in selecting recipients is a social problem known as the rule of rescue. The rule of rescue, named by the bioethicist Albert lon- ‘° refers to the strong social tendency to help an idt‘ntified individualrin this sen. context, a patient—rrather than unidentified, anonymous, or statistical people Who are equally deserving and equally endangered. Countless exam rescue can be cited. if the story of a small closely on television, hundreds or thousands of people w thousands of dollars in contributi The ‘Rule of Rescue A four ill probably send tens ons for the rescue effort; meanwhile. though. the .- Chapter 13 Allocation of Artificial and Tra nsplauitabli- Organs 341 story of another squall ' , y deserving person in d “we” e_ y I anger does not re ' ' ' discus?“ i:gd[_[;h1;5e3mnd person isnot rescued and therefore dlcsftlilgf tediwsmn insurance ran a , benefited from the rule of rescue when his ri r; medcafee’ Cial _ u . Ie gained the attention of [he media d h P W . “I public funding in Georgia. an E flab), KEEN“. 5P0. n th three dBCZEp-‘rbttteJL? orgfart replacement. the rule of rescue has been used for mr Charles FiSke 5:: a ew children in organ failure. l‘n 1982. hospital admiIT'eafly his daughter Jan; ‘ «fie-stuin manipulated the media to obtain a liver don ‘Stfa‘ transplants over "2;, ca Endurinsplant teams favor identified candidates ft: or rule of rescue math 1 ates for primary transplants itisalsoan instance ft:- Pmple Have t-o Diewcigupgténceras of course, the Seattle Times story "Will $1108: dialyfijfi patientsr , W ich was Instrumental in getting support for nine The rule of rescue can Obv' I I _ . . rously be used ve ' ‘ “0m. Eth _ I I ry successful] . b wk of Ical problems. To begin With, if one life is worth the :a m It Invo'ws 50- M ire-ac}? seems irrational and unfair ‘ me as mom“! the 50, t I ' ' ' I muadleheadefjnma that: drive the rule of rescue often seem irrelevant trivi l Whogets m live. h cigc‘s to Ilve shouldn‘t be decided by who gets on It 1 'a '1 or gone“ in“) the 5:53;: p332 decided by who has been admitted to a hospfélvd?§:s _ . 0 gets to live shouldn‘ b ' ' r em I w _ I t e decided b 03 Fur: thelp:1 gfgsttlpeimeésgpuldn t be decided by who is cutesthrdggfal’im- I _ .' rescue can mean that'n ' - ' - ' “g. are mak d I I ] llmallfvllt’.‘ atek - tors Wisp? fecttalons about who lives and dies. As newspapefiandetelw? in efiec‘t _ y ound out. the rule of rescue replaces a God ' gw‘smfl Ed'- mem eduorl committee with an assign- Finall , th ' Person wguis 285:}?dalfagpenfilpgnewtth the rule of rescue is that for every idontifiab] Although origiéating inth Ey nulpiber nlanonymous patients whosmm tel lar r CL h be _ 10C" cs,l e rule of rescue reall e'x ' ' ‘ hug; 5P:ial mover? kinds of ethical theories. On one side areypnrfiflglll‘ltc; a' mt‘licah ga to identified people such as patients in the hospital ngbc l v rs 0‘ Doe‘s family or m ' v embers of o '- tmm Such a theory. nab mlmtrr. The so-called "ethics of cane“ mus. On the oth ' ' ' ' that regard 93:; Sldfsit‘c ttnprtrtirtl theories, such as Kantian ethics or utilitarian' graphical lmalionp; l: as having the same moral WUTll'l regardless of his mm! m] cf the NIB of m to or nonmarally relevant criteria. It is precisely the a fi'eol- Spisc for SUCh P‘mlsltie towards an identified person that impartial theoge: :la _ . la I y seems to disvaiu t I - a— Who do not receive the medical resource E he worth 0‘ a” the anonymflus People “I 5 clash looms Illt‘Ilu ctne. Adm] ‘i ma Jl~ l ghout med] 5 ton to the htfipll‘al )1 . ' lustrate tit e rule of rescue when a powerful physician decides to admit a patient w'th id 1 in [D can: for hlm ()bv , the llDS Pl 8 Cal! 1 Out lTlL 1C6 surance and tously l l “01 d0 . so for ever one ' ' I y or it will be sought out by other patients without insurance and go bank t. ' ' rup Such an adrrussron may give the patient hundreds of thousands 0 31‘5 worth of TWI'ie. n V l:lucl’l an admls- Bl d I] treatment lhdl Sh ' b { would Oll‘lE 0! et. . 5m" Call also make “IE phy'SIClal'l feel llkt'.‘ d lIEl'O, QW‘I'I If It does IIOI bOlVE llll’: Elma“?! bllUCtUI'al injustices m the Amer ICEtII S‘f’iEEI‘fl llf medical finance [SEE ll I'.‘ last . Chapter}, #——'—"— ' ‘ I ' taI Treath 342 Part Three Classic (.3505 about Research and htpcnmcn UPDATE 1 ‘5 God committee went on selecting and rejecting dialysis patients for ncprlmy 20:2:de By 1971 however many stories had dramatizedfth; plight of 231:: 0:“ ' - - f' at ear She Glazer, the presidento t e merica — 32:: festilied I:lrarriatically before Congreps. Atithleligyfi: (although it may be exaggerated), Blazer dialyzed himself or:t leis blond flow and Means Committee, disconnected a tube from the mac “19,1” have this blood onto the floor, and said, “If you don’t fund more machmes. you "I! - on yl‘hulrégngisongress legislated a “right to medical caref‘of sorts, ftp: Afigfi; [t was limited to just one organ, the kidney. 1 his was the [land-Stigrea :riialyfis ma— (ESRD) program, whereby the federal government won I‘pagrl mblcm of WhidI chine for any American who needed one. Faced with the et rcC p r69 Mk What p1tients should be funded and how to select silich patitebms, (mg i ' ' a ten '. “5&1?” $353231323523332213§$;?£enl.uthe 1972 goattacfifia in a sesslgon lasting only 30 minutes. The impetus came friflaiénzpll‘lpirhzy fan“: patients, lobbyists for some physicians. concerns over htg hem g M on space in people of color, and concerns that too much money :as I Wd- Impe- and the war in Vietnam and too little on dying people oktitgrrge alien‘s! WhiCh tus also came from a national media ogcfgsnpcfdte y p ' rt a :n _ 1mg}: :3:ll::leio all patiegnls, ESRDih ended the problem of al- Iucatihg it and thus ended the mailer the (sod comdmitlteei n unkmunme pm“:- in retrospect, FSRDA was hastily conceived, an I Is; aI r Similar coverage. dent—other groups, such as hemophiliacs, soon pres: I o r 9ooner or later. of course, someone would haveto pay t e pipe . ould come down ‘ Advocates of funding for dialysis had predicted that cos 3w 3 Who was once as more machines were produced. Senator Vance Hartke (it‘ll;1 tanh,EQRDA mum considered a contender for the presidency, predicted that al tp‘ugcaflcr because of cost $100 million the first year, its cost would drop sharp y od “m a dlaIYSis increased efficiencies in production; and Willemf had sai i ' ‘ ‘ unit cost 0 . I mull-2:3? wrong, because of the cost-tgusurehml‘pgfi: mcnt scheme that American metlicifpf1 font: 1:; :9. mg"; diaiy‘ ‘ ent, h siciarei an ospi M ” Eilsull‘icy misled (or anything else] and pass the coil 1a - refit on to "third-party payers“—that is, toordinary peop e H ply pcost- lus lhrprnedical insurance and who have FICA taxes withheld-Elm: ebec inf-[ex enzive reimbursement was that hospitals not only $JbT;E$:Cm2mU‘-?fxpcns?ve ma- " sis machines but actually had an mean I I I y it is no sur rise that y , m5 I ‘3 is casually; less, l’SRDEl was costing $4 billion a year for 150$?) timezfiznggwfilly yearly figure was at least 20 times higher than Ilarlkesl 1c I . t 100 times higher, since Iiartke had expected the cust to a . Chapter 13 Allocation of Arliflcial and Transplalitable Organs 343 Cost—plus funding was replaced in 1983 b related groups {BROS}; but until then, all it. no matter how hope circulating that blind p y reimbursement by diagnostically passible candidates for dialysis received less their other medical problems might be. Reports were atients with cancer arid Alzheimer’s di ' usands of dollars a year. A ' ‘ profits during the 19805, hundreds of dialysis clinics sprang upr some run by hos- pitals. some by for—profit companies. Under ESRDA, Congress also reimbursed kidney transplants. which Were not too expensive in the 19705. After the de velopment of cyclosporin, the number of successful renal transplantsjumped from 3,?30 in 1975 to over 9,000 in 1986. In ad- Update: UNOS and the Rule of Rescue As we have seen, utilitarianism clashes wit and the same clash is writ large in Ame for transplant. A utilitarian wanting to maximize human life in the lifeboat selects the stmngcst rowers, losses the weak, sick, and elderly overbua rd, and cats the dog on the long row to Africa. SimilarIy, a utilitarian wanting the maximal years per organ only allocates organs to first—timers {unless the organ will be wasted ifit doesn‘l go for a retransplant). But the impartiality of utilitarianism makes it oblivious to, and even scorn, the partiality in the ethics of care. For impartial ethical theories such as utilitarianism Ur Kantian ethics. one human life is as valuable as another, regard— less of whether that life is my father, my neighbor, my patient. or my fellow citizen. l’iggybacking this logic on some facts leads to a surprising conclusion about the way organs are allocated in America.- giving organs first to the sickest patients does not maximize Ilte most years per life per organ. Why? Because some patients are too near death to ever have a realistic chance of life wrth lhe new organ. If they die, the organ has been wasted. Therefore, the best way to get the most organs per life is to give the organ to moderately sick people or even relatively healthy people just experiencing heart or liver failure. In that way, the most people live the longest with the given supply of organs. Congress, many surgeons, and the families of many patients reject such an im~ partial system. As their loved one grows closer to death, they grasp for a solution. Even if it wastes an organ, they feel that after waiting for years on the list for an or- gan, they deserve a chance. firstmng is this feeling lhatln the fall of 2002, Congress airmm‘ritedthat the United Network for Organ Sharing (UNCB) allocate organs on the basis of ~sickest first." Howard Eisen, head of Temple University Hospital‘s heart transplant program, disapproves, “What you‘re doing is giving hearts to people who will do less well h the ethics of care over retransplants rica‘s national system of allocating organs 1’ n‘Jlm-r (‘IassicCamsaboulRmaKl-Md Ftpi‘nnl'l'llfllTil‘llmnfi 34-4 4 I ltl two ith them Implc am waiting longer. so they gelyflcker. and end up 3e n3 :perations when lhey would otherwise need one. C H A P TE R I 4 FURTHER READING I mi] dllhswaduy ‘l'leraumgr rorair: a Social VliewufUrxan Transpianrsmrum- f d ll , . Rem H: :d ed. mu, Uniw-mily 0! Chicago leIL,19?5. I m “mm-m“ 50cm“ oxford 9:9; and ludllll Swazi'y. Spun! Hvrrs: Organ Replaremm Bab Fae flfid Bab Their 5a Rank . -, pm New York, I992. U .WH.“ d Mshwgh y y e ‘h unévhvtll Plr‘anl' Fawk- Mmmirs aja Dunsplmal Surgeon, m . y 'l omas r ., . Press. PA, 1992. This chapler discuase-s two major casas. In the first case, which took place in 1984, a balman heart was transPPanted inlo an infant called Baby Fae. The semnd case, which look place in I992, inmlvui an anenmphalic infant known as Baby Theresa whose pamnis wa mod to donate her hear! in anull‘ler baby. ._._-.¥_."h¢.v,3_\,.v_..-. ._. The Case ofBrzby Fae BACKGROUND: XE NOGRAFTS Transplantatiun uf an organ {mm om: species Io nnmher ‘5 called r‘l Jciiogmfl. Be- lure Ihe Baby Fae casufillcmpts to lmnsplanl animal organs lohlrman palicnhi had been rare. and ihcm- thal were undertaken did not promise much. In I964, JamPs Hardy implanted a chimpanme heart into a 63-year-old man who lived 90 minutes} in 1997, Christiaan Barnard piggybacked a {ml-Joan hear: mud to the heart of a 25-year-qu lialjan woman, who livcd 300 minulas; later he used the Samt amhmque in implanl a chimpanzix' heart in a 59-year-old man who lived less than [our days. During the 19605, Thomas 5:11er and Keilh Roemlsma pnrfnrrm‘d six transplants each with simian kidneys and had somewhat better luck, but they evantuafly aha nduncd Ihese prujuds. BA BY FAB: THE IMPLANT AND THE OUTCOME The infant who ca rm- lo be known as Baby Fae was pita! in Barsmw, L'alifnmia (a smatl desert town; She was Ihme weeks premature and weighL-d I‘iw= pounds. N ...
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organ_trans - CHAPTER 13 . . . . d Allocation ofArtt 61:11...

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