Resolving Ethical Dilemmas: A Guide for Clinicians
3rd Edition

Chapter 41
Ethical Issues in Organ Transplantation
Kidney, liver, heart, and lung transplantation can allow patients with end-stage disease to return to active lives. In organ donation interventions are performed on one person in order to benefit another. Thus, consent for donation and preventing harm to donors are essential to maintain public trust that physicians never compromise one patient’s care to benefit someone else. The need for organ transplantation far exceeds the supply of donated organs; in May 2004 more than 85,000 people were on waiting lists for transplants. Thus, difficult decisions about allocating donated organs cannot be avoided. This chapter discusses the donation of organs, the selection of recipients, and the cost of transplantation.
Donation of Cadaveric Organs
Ethical Concerns about Cadaveric Donation
Harm to Donors
At the onset, concerns were raised that cadaveric organ transplantation hastened or caused the donor’s death. Criteria were developed for determining death in patients whose brains had ceased to function but whose hearts were still beating (see Chapter 21). Misunderstandings about brain death persist, and many people do not understand why organs may not be harvested from anencephalic infants and persons in a persistent vegetative state.
Conflicts of Interest
Because of concerns that potential organ donors might receive suboptimal care, decisions about the potential donor’s care must be separate from decisions about procurement and transplantation. The physician for the potential donor may not be part of the transplantation team. Also, in the United States payments for donation are prohibited to prevent abuse and exploitation of potential donors.
The Autonomy of Organ Donors
Some people would not want to be organ donors, and their wishes need to be respected. It is controversial how much evidence of a donor’s consent or refusal is required and whether surviving relatives may decline to donate even if the patient would have wanted to be a donor.
The Current System for Cadaveric Donation
The United States has a voluntary altruistic system for organ donation. The Uniform Anatomical Gift Act allows people to use an organ donor card to grant permission to use their organs for transplantation after their death. This card is usually attached to a person’s driver’s license. However,
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few Americans have signed such cards. One reason is fear that persons who have agreed to organ donation will receive suboptimal care (1). Although the donor card has legal authority, in practice permission for organ donation is sought from the next of kin after the donor’s death (2). Hospitals must report all inpatient deaths to local organ procurement organizations, which contact eligible families to request donation (3).
Only about 50% of relatives of patients with brain death give permission for organ donation (1). Many families do not understand the concept of brain death, and some perceive the organ procurement process as insensitive (1). Some cultures reject organ donation (4,5). For instance, some Asian or Latino families believe that bodies or spirits can suffer after death if organs are removed.
Nonheart-Beating Cadaver Donors
Most cadaver donors are declared dead by brain criteria and have effective circulation until the harvesting of organs. A few donors are declared dead by cardiorespiratory criteria (1,6,7). In one approach, donors are terminal patients whose life-sustaining interventions will be withdrawn. They are transported to the operating room, where life support is withdrawn, death is declared using cardiorespiratory criteria, and organs are promptly retrieved (1,6,7,8). This approach has been criticized because relatives might not have sufficient opportunity to be with dying patients. In addition, anticoagulants and vasodilators administered to preserve the organs might hasten or cause death. In a second approach, donors are patients in whom cardiopulmonary resuscitation (CPR) fails or who are dead on arrival in the emergency department. Catheters are inserted into patients immediately after death is pronounced and organs are perfused to keep them viable (6,7). Later, physicians seek permission for transplantation from relatives. However, consent is not obtained for insertion of catheters and perfusion of organs (1,7). Surveys show that the public strongly objects to such procedures being carried out without permission.
Proposals to Increase the Donation of Cadaveric Organs
Many proposals have been made to increase cadaveric organs donation, and some have been adopted in other countries. However, some of these proposals might undermine public trust in transplantation, which in the long term might make people less willing to donate.
Mandated Choice
Persons would be required to state their preferences about organ donation when renewing drivers’ licenses or filing income taxes (9). This requirement would relieve relatives of the stress of making decisions about donation. In surveys most Americans support this policy.
Following Donor Cards
Physicians would retrieve organs from people who had signed donor cards even if the next of kin objects. Legally, this policy would merely implement existing statutes. Ethically, it is consistent with respecting patient autonomy and advance directives. However, some family members might feel outraged if organs are harvested over their objections.
Presumed Consent
Currently, organs are harvested only if the patient or family has given explicit consent. Under this proposed policy, organs would be harvested unless the patient or family specifically objects (10). However, 52% of respondents in a U.S. survey disapproved of this approach (11).
Financial Incentives for Donation
A regulated market in organs has been proposed to increase the supply of organs (12). Critics charge that such a market would undermine altruism, treat the human body as a commodity, and result in exploitation, fraud, or coercion, particularly in underdeveloped countries (13,14). Furthermore, commercially motivated renal transplantation in developing countries might pose risks to recipients because of a significantly higher rate of human immunodeficiency virus (HIV) and hepatitis B infection (15). In the United States buying and selling of organs is illegal because of
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objections to commodifying vital organs and concerns about exploitation. However, one state provides partial burial expenses for cadaveric donors. In addition, proposals have been made to give living organ donors incentives, such as medical leave, life insurance, and highest priority for transplantation if they should need it (16). Proponents distinguish these modest incentives and tokens of appreciation from cash payments.
Donation of Organs from Live Donors
Transplantation of kidneys and portions of liver and lung from live donors is increasing. In 2002, 43% of kidney transplants were from living donors. Live donors include both “emotionally related donors”—such as relatives, friends, and coworkers (17)—and strangers. Donation from strangers is technically feasible because human leukocyte antigens (HLA) compatibility does not enhance survival of liver and lung transplants and is less important in transplants from living kidney donors than from cadaveric donors. The quality of organs from live donors is higher because of thorough screening and shorter ischemia time compared to cadaveric donors. Transplants from live donors do not delay cadaveric transplants to other patients on the waiting list because the total number of transplants is increased. Hence, persons on the waiting list suffer no adverse consequences.
Ethical Issues Regarding Live Donation
Harm to Donors
Surgeons might violate the guideline of “do no harm” when they perform an operation on a healthy person for another person’s benefit. The highly publicized death of a living liver donor in New York in 2002 dramatized the grave risks of donation. In addition to serious medical problems such as bile leak, donors suffer pain and lost income.
To limit risks, persons may not serve as living donors if they have medical conditions that significantly increase operative risk or if they have abnormal organ function. In the case of kidney donation, persons are excluded as donors if they have a condition that might impair renal function in the future. To further reduce risk of living liver donation, some have advocated that this procedure be carried out only at experienced centers (18,19).
In many impoverished countries paying live donors is widespread (13). In India living kidney donors said that they were financially worse off after surgery despite having received payments (20). Although some writers have advocated a regulated market to increase the number of organs from living donors, the likelihood of exploitation, coercion, and abuse is a compelling reason to reject such proposals.
Motives of Donors
Donation to relatives and friends is understandable because people are expected to help and care for others with whom they have close relationships. However, donating to a stranger raises concerns. On the one hand, forming a close emotional bond to a stranger in need can be an extraordinary form of altruism and humanitarianism. On the other hand, it can also be driven by a desire for publicity or financial gain, by internal psychological conflicts, or by psychopathology. Thus, offers by strangers to donate need to be carefully reviewed to rule out such problematic motives.
Consent from Donors
Because a live donor undergoes serious risks in order to benefit another person, it is essential that the decision to donate be free and informed. Altruism does not fit a model of rational utilitarian deliberation about personal risks and benefits. The live donor finds a reward in making a sacrifice to benefit someone else. Consent might not be informed because many live donors choose to donate immediately, before they learn of the risks of donation. Also, consent might not be free. Relatives might feel social pressure to donate. Donors might also feel internally compelled to donate.
People commonly base important decisions on emotion rather than reason. Donors should be able to explain their decision to donate, however, in a coherent manner, which takes into account the risks. The donor needs to understand the procedure’s risks, even though the donor might give less weight than most people to the possibility of a serious risk. The donor should make a choice
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that remains stable after the donor receives more information and has time to reflect. Also, the decision should be consistent with the donor’s core values.
The “gift of life” through live donation entails obligations and burdens (21). Generally, gifts impose reciprocal obligations and expectations on the recipient. The gift of an organ is so extraordinary that it can never be repaid and might therefore become a “tyranny (21).” A live kidney donor might take a “proprietary interest” in the recipient’s life (21). The recipient’s sense of indebtedness might make it difficult for him or her to remain independent of the donor. For these reasons, many transplantation programs generally do not reveal the identities of donors and recipients to each other.
Use of children as live donors raises ethical concerns because they cannot give consent for themselves and depend on others to protect their interests. Although adults may make extraordinary sacrifices for others, they may not require children to do so. Hence, children should be live donors only as a last resort if no suitable adult donor can be identified. To assure that a child donor’s interests are protected, approval from the courts should be sought.
Confidentiality of Recipient
The recipient might have a medical condition that might affect the potential donor’s willingness to donate. For example, the recipient might have a condition such as cancer that might recur in the transplanted organ and reduce the likelihood of long-term success. Moreover, some donors might feel that patients whose liver failure was caused by alcoholic cirrhosis or HIV infection brought about their illnesses through their own actions and choices. According to the principle of informed consent, prospective donors should receive information that is pertinent to their decision to donate. However, patient confidentiality is also important; potential recipients should give permission to disclose such information to potential donors (22).
The Current System for Live Donation
Live donors undergo extensive education and medical and psychosocial evaluation (23,24). This process ensures that decisions to donate are informed, free, and altruistic, and that the donor is medically suitable.
Some eligible donors who do not wish to donate might need help in carrying out their wishes—for example, in the face of family pressure to donate. The transplant team might need to say that the potential donor has been ruled out as unsuitable, without providing more specifics. Such nondisclosure is justified because the person might face pressure to donate and recrimination if the true reason were known (21). It is ethically problematic, however, to misrepresent the potential donor’s medical condition to provide a reason not to donate (23).
Selection of Recipients
Because the number of people needing transplants far exceeds the number of donated organs, difficult decisions about allocating organs must be made.
Historical Background
When dialysis was developed in the 1960s, only a limited number of dialysis machines were available and committees ranked candidates according to their perceived social worth (25). Responding to concerns that selection was based on prejudice and unwarranted value judgments, Congress decided to fund dialysis for all patients with end-stage renal disease. In transplantation, however, allocation decisions cannot be avoided because the limiting factor is a lack of organs.
Because people donate cadaveric organs without knowing who will receive them, a fair allocation procedure is essential to maintain public trust in transplantation (14,26). In the United States the federal government and the United Network for Organ Sharing (UNOS), a nonprofit organization with which the government contracts to operate the system for distributing organs, set the rules for allocating cadaveric organs.
The following section discusses general ethical principles for allocating organs. Specific selection criteria are too detailed to be discussed here but can be found on the Web site of the UNOS at http://www.unos.org. Different considerations receive priority for different organs (27,28).
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Beneficence
From a utilitarian perspective, scarce organs should go to those patients who will receive the greatest net medical benefit. Relevant outcomes include the likelihood and duration of survival and the patient’s quality of life. Although this criterion appears objective, it involves complex value judgments.
Psychosocial factors such as poor adherence to medical regimens, substance abuse, and lack of family support might compromise outcomes of transplantation. Recent injection drug use and a history of nonadherence are commonly regarded as contraindications to transplantation (29,30,31). Many physicians consider it pointless to transplant a scarce organ that is very likely to be rejected because of nonadherence to immunosuppressant drugs. Critics, however, contend that psychosocial factors might “cloak biases about race, class, social status, and other factors that, if stated openly, would not be tolerated (26).” Furthermore, such obstacles might be overcome with rehabilitation and psychosocial support (28).
Justice
The guideline that scarce resources should be distributed fairly or equitably is indisputable in the abstract but difficult to specify. Several ways to operationalize equity have been considered.
Time on the Waiting List
The precept of “first-come, first-served” seems intuitively fair if there are no other compelling reasons to distinguish among candidates. However, time on the waiting list can be manipulated by placing patients on the waiting list earlier in the course of illness or at several regional transplantation networks (14,32). Better-educated and wealthier patients are more likely to be on multiple waiting lists.
Medical Need
In liver and heart transplantation, patients who would die soon without transplantation are given priority over more stable patients (33). The rationale is to assist those in greatest need. In 2002 the prioritization system for cadaveric liver transplantation was revised to use a severity of illness score [the Model for End-Stage Liver Disease (MELD) system] based on objective laboratory tests that predict the risk of death while on the waiting list more accurately than clinical judgment does. However, significant geographical disparities remain, with sicker patients in larger organ-procurement areas waiting longer for transplants than patients in smaller organ-procurement areas (34).
Ability to Pay
Transplantation is generally performed only on patients who can pay for it. Medicare covers kidney transplantation for all Americans, and most private insurers and most state Medicaid programs cover liver and heart transplantation (35). Americans who lack health insurance must raise money for transplantation of organs other than kidneys through means such as public appeals.
Allocating organs by ability to pay, although routinely practiced, has been strongly criticized (14). It seems unfair to ask all people, rich and poor alike, to be organ donors if the poor or uninsured would not be eligible recipients. Also, people might be less willing to donate organs if they perceive that the distribution system favors the wealthy.
Previous Transplantation
The success rate in transplanting a second organ after a transplanted organ fails is substantially lower than in first-time transplants (36). The guideline of promise keeping or loyalty is often used to justify retransplantation; having made a commitment to the patient, the surgeons cannot now abandon the patient. Critics contend, however, that retransplantation might be “an obdurate, publicly theatricalized refusal” to accept the inevitable limits of human life and an unwillingness to say “enough is enough (37).”
Citizenship
Should people who are not long-term U.S. residents receive organs harvested in the United States (14)? Particular objections have been directed at foreigners who come to the United States
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specifically to obtain a transplant. It seems unfair, however, to exclude foreign nationals who contribute to the U.S. economy and who would be asked to serve as organ donors.
Geographic Location
In response to significant disparities in waiting times for liver transplantation, it has been proposed that organs be allocated on a national basis to those with the greatest medical need, with less emphasis on keeping organs in the geographic area in which they are donated (3). This proposed change would provide more organs to large referral centers, which transplant sicker patients and have better outcomes. However, opponents object that such redistribution is unfair because it penalizes states that make efforts to increase donations and might also worsen outcomes because of increased cold ischemia time (3).
Ethnic Background
Even though African Americans are more likely than Caucasians to develop chronic renal failure, they have less access to renal transplantation. They are less likely to be evaluated for transplantation, to be placed on waiting lists, and to find a suitable donor (38,39). Also, waiting times on transplantation lists are longer for African Americans. The point system for prioritizing cadaveric kidneys gives priority to HLA matching, which improves graft and patient survival. However, this makes it more difficult for African Americans to receive cadaveric kidneys. Although African Americans donate cadaveric kidneys at the same rate as Caucasians, they have a greater need for renal transplantation. Because the prevalence of ABO and HLA antigens differs among ethnic groups, African Americans are less likely to find a highly matched Caucasian donor. Thus, the allocation procedures to maximize benefit through optimal graft survival conflict with equitable access to transplantation. Proposals have been made to modify the point system to increase equity while only slightly increasing renal graft loss (40,41).
Differences in Allocating Various Organs
The ethical guidelines of beneficence and justice are balanced differently for different organs (33). For renal failure, dialysis is an effective alternative to transplantation and the level of HLA matching is a predictor of cadaveric graft survival. Hence, urgency is not considered and HLA matching is given weight. In contrast, in liver failure, because there is no alternative to transplantation, the highest priority is given to patients in the most critical condition. HLA matching is not considered because it has little impact on outcomes for this procedure. These different ethical considerations might conflict. For example, liver recipients with the most urgent need have worse outcomes and greater costs than more stable patients.
Patient Behaviors that Cause Disease
Patients with end-stage alcoholic cirrhosis disease initially were not considered for transplantation because it was believed that active drinkers would not take immunosuppressive medications regularly. However, selected alcoholics who receive liver transplantation have short-term and long-term survival rates comparable to those of patients with other liver diseases even though a few recipients have a relapse of alcoholism and are noncompliant with immunosuppression (42). Thus, the issue is not whether such transplantation is medically feasible but whether it should be done. Some argue that patients who develop end-stage liver disease “through no fault of their own” should have higher priority than persons with alcoholism (43). In this line of thinking, patients should be held responsible for behaviors that would deprive others of scarce resources. Others contend that the public might be less willing to donate organs if they are given to alcoholics. On the other hand, restrictions on liver transplantation for alcoholics have been strongly criticized (44). Critics argue that because alcoholism has genetic and environmental components that are beyond the person’s control, it would be unfair to hold a patient responsible for it. Moreover, criteria for disqualification are inconsistent and arbitrary and treatment for alcohol dependence is not routinely offered (45). Furthermore, judgments of moral responsibility are not made for other illnesses. For example, smokers are not precluded from heart transplants.
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Cost of Transplantation
Because of the soaring cost of medical care, the cost effectiveness of organ transplantation cannot be ignored. In 2002 average billed charges for a kidney transplant were $143,000, for a liver transplant $314,000, and for a heart transplant $392,000 (46). The annual costs of follow-up care after transplantation are comparable to the costs of other high-technology medical interventions, such as cancer chemotherapy (35).
The cost of organ transplantation can also be viewed in the context of allocating resources in a health care system that denies many persons access to basic care. Critics charge that “allowing ourselves to become too caught up in such problems as the shortage of transplantable organs while… millions of people do not have adequate or even minimally decent care” is “medically and morally untenable (47).”
In summary, although organ transplantation can return patients with end-stage illness to active lives, it raises difficult issues of informed choice in donation and fair allocation of scarce resources. These dilemmas need to be addressed openly in order to maintain public trust in transplantation.
References
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20. Goyal M, Mehta RL, Schneiderman LJ, et al. Economic and health consequences of selling a kidney in India. JAMA 2002;288(13):1589–1593.
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34. Trotter JF, Osgood MJ. MELD scores of liver transplant recipients according to size of waiting list: impact of organ allocation and patient outcomes. JAMA 2004;291(15):1871–1874.
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41. Roberts JP, Wolfe RA, Bragg-Gresham JL, et al. Effect of changing the priority for HLA matching on the rates and outcomes of kidney transplantation in minority groups. N Engl J Med 2004;350(6):545–551.
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Annotated Bibliography
1. Council on Ethical and Judicial Affairs of the American Medical Association. Ethical considerations in the allocation of organs and other scarce medical resources among patients. Arch Intern Med 1995;155:29–40. Overview of the topic.
2. Committee on Organ Procurement and Transplantation Policy. Organ procurement and transplantation: assessing current policies and the potential impact of the HHS final rule. Washington: National Academy Press, 1999. Review of proposed federal regulations to improve allocation of scarce organs (particularly livers) for transplantation.
3. Cohen C, Benjamin M, The Ethics and Social Impact Committee of the Transplant and Health Policy Center. Alcoholics and liver transplantation. JAMA 1991;265:1299–1301. Moss AH, Siegler M. Should alcoholics compete equally for liver transplantation? JAMA 1991;265:1295–1298. Two articles that argue for and against liver transplants in alcoholics, respectively.
4. Delmonico FL, Arnold R, Scheper-Hughes N, et al. Ethical incentives—not payment—for organ donation. N Engl J Med 2002;346:2002–2005. Argues that modest financial incentives to reward organ donation are ethically defensible, whereas payment for organs is not.
5. Scheper-Hughes N. Keeping an eye on the global traffic in human organs. Lancet 2003;361:1645–1648. Passionate criticism of payments and black markets for organs for transplantation.
6. Adams PL, Cohen DJ, Danovitch GM. The nondirected live-kidney donor: ethical considerations and practice guidelines: A National Conference Report. Transplantation 2002;74:582–589. Overview of kidney transplantation from live donors.