Organ Procurement and Transplantation: Ethical and Practical Issues
Arthur Caplan, Ph.D., LDI Senior Fellow, Trustee Professor of Bioethics and Director, Center for Bioethics, University of Pennsylvania School of Medicine
Volume 2, Number 5; September 1995
Recent reports of public figures receiving life-saving transplants have brought renewed attention to the scarcity of organs and the importance of organ procurement. This Issue Brief highlights some of the ethical and practical concerns surrounding organ and tissue transplantation.
Scarcity of donor organs is the key challenge in transplantation
Although more transplants are being performed in the U.S. each year, the waiting list continues to grow. Several factors contribute to the scarcity of organs:
Demand for transplantation has increased as success rates have been expanded, transplant centers have proliferated, and more people are considered eligible for transplants.
Age limits for heart and liver transplants have increased; diabetes is no longer an absolute contraindication; and people with alcohol-related liver failure are candidates at many centers.
The number of people willing to donate organs has shown little growth in the recent past.
Successful safety measures, such as speed limits and seat belts, have reduced the number of deaths where organ donation might have been possible.
Fear of transmitting HIV and hepatitis has grown.
The gap between the demand for organ transplantation and the supply of donor organs is growing
The waiting list of the United Network for Organ Sharing has grown from 13,115 names in 1987 to 40,842 as of June 1995. The scarcity of organs has dire consequences.
Between a third to a half of all people on waiting lists die before a transplantable organ is found.
The shortage of organs for newborns and very young children is especially acute: 25% of those waiting for liver transplants are children less than 10 years of age. In 1993, more than 400 infants with congenital heart defects died while waiting for a donor heart.
Current policies for procuring organs rely on the ethical principles of voluntarism and altruism
In the U.S., the current system for procuring organs is based on patients and families voluntarily deciding to donate their organs to help others.
The emphasis on voluntariness is consistent with the value of respecting individual autonomy and conveys respect for the dignity of the body after death.
The volunteering system is supported by the notion of altruism, the desire to help others, as the overriding factor in the decision to donate.
Public policy has focused on the individual's prior consent to donate, as expressed in a donor card, but consent of the family is almost always sought at the time of death.
Health professionals identify and approach donor-eligible families, but most families do not consent to donate
Public opinion surveys show that most people say they would donate an organ. However, in times of grief, most families do not agree to donate organs when asked, according to the just published National Organ and Tissue Procurement Study. This contradicts the prevailing notion that the scarcity of organs is due to the failure of health professionals to discuss the issue with families.
Required Request legislation in almost all states, mandating that hospitals develop policies to ensure that health professionals identify and approach eligible families, seems to have accomplished its mission but has not led to increased donation.
84% of health professionals correctly identified patients' eligibility to donate organs, tissues or corneas, and 73% of eligible families were approached about donation upon a patient's death.
34% of approached families agreed to donate something (47% consented to an organ, 35% to tissue, and 24% to corneas).
Current policies for distributing organs favor a pattern least likely to save lives.
Allocation rules give top priority to the sickest patients, regardless of the prognosis. Distributing organs in this way is not likely to result in the best outcomes.
Priority for organ transplants is determined by medical urgency and waiting time. With few exceptions, organs go to those who have been waiting the longest at centers near the donor.
Those who need a second, third or even fourth transplant because their initial transplant failed often gain top priority, even though they are not likely to do as well as others who have not had a first transplant.
Money is a strong factor in who gets an organ
Although organs cannot be sold or bought, money plays a role in how this country rations scarce transplant resources. Money does not determine who gets a transplant at a particular hospital, but it does determine who is referred for consideration and gains admission to a transplant center.
Access to transplantation is a function of access to good primary care and the right kind of insurance, which is heavily dependent on personal finances.
To gain access to the waiting list for organs, a patient must demonstrate the ability to pay transplant-associated costs. A kidney transplant costs $35,000 on average, a heart transplant $60-100,000 and a liver transplant $150-200,000 in the first post-operative year.
Many insurance companies and government programs do not cover the costs of some types of transplantations, particularly newer therapies such as lung, pancreas or multiple organ transplants.
Since transplantation depends on public altruism to make organs available, it is an especially untenable public policy to ask everyone to donate but to give organs only to those who can pay.
Financial incentives, in the form of cash rebates, estate tax discounts or payments for funeral expenses, have been proposed as a solution to the shortage of organs. Thus far, these proposals have been rejected by the medical community and general public because the incentives pose risks to personal autonomy and fairness.
Such incentives assume that self-interest, rather than the desire to help others, is the overriding factor in the decision to donate. They convert donors into sources, and human beings into products, which thereby undermines the values of respect for others and self-esteem.
Given the financial obstacles that poor people face in gaining access to health and transplant services, payment for their body parts suggests exploitation.
Medicaid programs in some states do not pay for some types of transplants. The uninsured and underinsured are sometimes forced to resort to public begging to be considered as recipients.
Non-financial incentives have focused on policy changes to improve donation rates. These policies have not been shown to work.
Required Request policies, now mandatory for Medicare reimbursement and hospital accreditation, have not resulted in the expected increase in procured organs or tissues.
Under a policy of presumed consent, all people would be considered willing donors unless they have specifically recorded their objection to donation. Presumed consent has been tried in Europe with unimpressive results.
Mandated choice would require people to make choices about organ donor status when filing official documents such as tax returns. This will not improve donation rates if, as evidence suggests, support for donation is weak. Recent experience in Texas with mandated choice resulted in a refusal rate of 80%.
Another way to reduce the scarcity of organs is to expand the donor pool. These proposals challenge current concepts of who, or what, is eligible to be an organ donor.
Use more living donors. However, it is hard to imagine an informed and truly voluntary consent in the case of living biological relatives; on the other hand, using unrelated donors seems to violate a fundamental tenet of medicine, which is to not harm someone solely to benefic another.
Use mechanical ventilation and life support to permit organ donation from those who would have died otherwise. Families of the dying could be asked to consent to life support to make donation possible.
Broaden the criteria used to determine death. Some proposals would consider different criteria for anencephalic infants and people in persistent vegetative states to facilitate their use as sources for organs.
Use animal sources, an alternative that presents many ethical, psychological and public policy issues. Many technical and biological obstacles must be overcome before the use of animals is considered anything but highly experimental.
Improving the current system will require a better understanding of why families refuse to donate. Public policy has placed emphasis on the individual as the decision-maker, but the familial, group nature of the real decision-making process has been all but ignored.
Allocation guidelines that focus on likely prognosis rather than severity of illness and waiting time may result in the same number of organs saving more lives.
Empirically-based education campaigns directed at health care professionals and the general public are needed to maximize do nation within the existing framework for procurement.
Some proposals to change the existing framework would abandon the values of voluntarism and altruism. The key moral question is whether the pressing need for organs would justify this change, or whether the symbolic and social costs of shifting values is too high a price to pay.
This brief is based upon the following articles: L.A. Siminoff, R.M. Arnold, A.L. Caplan, B.A. Vernig and D.L. Seltzer, Public Policy Governing Organ and Tissue Procurement in the United States, Annals of Internal Medicine (1995;123:10-17); A.L. Caplan, Current Ethical Issues in Organ Procurement and Transplantation, JAMA (1994;272:1708-9); and A.L. Caplan, C.T. Van Buren and N.L. Tilney, Financial Compensation for Cadaver Organ Donation: Good Idea or Anathema, Transplant Proceedings (1993;25:2740-2).
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