By Ronald L. Scott
Living people are donating organs in record numbers. The Associated Press (AP) recently reported data collected by the United Network for Organ Sharing (UNOS) showing that in 2001 living organ donations surpassed cadaveric donations for the first time, although the trend has been established for at least the last 10 years. See http://www.unos.org/. A living donor may donate a kidney, bone marrow, or part of the pancreas, liver, or intestine. Although such donations are more likely to be to a family member, living donors sometimes provide organs to friends or associates. The AP report also noted a second, more disturbing trend, i.e., that living donors may face undue pressure in making a decision to donate an organ, and may not be adequately informed of the risks associated with donation.
Traditionally, “informed consent” involves the notion that patients must be adequately informed of the risks and benefits of a medical procedure before they can legally and ethically consent to the procedure.
UNOS notes that there are a number of serious risks involved in living donation. First, there are surgical risks and concerns common to many operations, e.g., anesthesiology risks, pain and discomfort, possibility of infection, and the risk that a surgeon may inadvertently damage an adjacent organ during the surgery. Some donors experience psychological problems from the family peer pressure exerted on the donor to encourage the donation or resentment where the donated organ is rejected. See Living Donation: An Overview at http://www.unos.org/.
UNOS also lists the potential benefits of a living donation including: elimination of the waiting time required for cadaveric donations; donee success may be better because they can take immunosuppressant drugs in advance of the surgery; and a possibly better tissue match, particularly for immediate family members. The only benefit mentioned for the donor is the “satisfaction of knowing that he or she has contributed to the improved health of the recipient.” See id.
Ethically, there is a problem with the risk/benefit analysis above. For most medical care, informed consent requires an understanding of the risks and benefits of a particular procedure to the patient. The patient accepts certain risks with the understanding that he or she will receive the potential benefits as a quid pro quo for the risks assumed. In the case of living donors, the “benefits” to the donor are largely intangible.
The other ethical issue with living donation is the pressure exerted on the potential donor. The donor may be told that without the living donation, the recipient will at best likely have to wait a long time for a cadaveric organ, or at worst the recipient may die. Informed consent involves the notion that the consent is freely given, relatively free from external influences. But external influences may be routinely present in living donations.
Ethically, perhaps the closest parallel to living donation informed consent may be found in informed consent for research. But even this parallel is a stretch. For example, a participant in a double-blind research protocol examining a new cancer drug may not benefit immediately from the study even if the drug is successful, since the participant may be receiving a placebo in the protocol. However, the participant may at least benefit from the study at a later time when the drug is approved for general use, and has the chance of benefiting during the study assuming those receiving a placebo are randomly chosen. Admittedly, some medical research may only benefit society at large rather than individual study participants. But participants in such research are protected by the oversight of Institutional Research Boards (IRBs). IRBs ensure that a participant’s consent is obtained without undue duress and after a full explanation of any potential risks. Living donors do not enjoy such protection.
Even though intangible, in some circumstances, the benefit to the donor may be extremely valuable. A mother donating an organ to a child would likely place a high value on the chance to save her child’s life. But ethical practice should still require that every effort be made to ensure that all living donors’ consent is truly voluntary and informed. Too often, physicians treat informed consent as a form of “defensive medicine” to reduce legal liability. It is considered an obligation imposed by the legal system rather than a valued medical concept of joint decisionmaking. Its value to physicians can be seen in the way informed consent is usually obtained, i.e., a form that the nurse has the patient sign. Particularly in the case of potential living organ donors, physicians must be willing to consider the idea of informed consent as a way for the patient and physician to meaningfully participate jointly in decisions. An ethical physician should confirm not only that the patient fully understands the medical risks associated with donating an organ, but also that the patient is making the decision free of undue duress.