Ask the Ethicist:
Should a PVS patient be a live organ donor?

Winter, 2006

Question: Mr. P. is a 58-year-old man with end-stage renal disease awaiting a kidney transplant. Because the wait for a deceased donor kidney is long, Mr. P. seeks a living donor. He has two healthy children, both of whom are willing to donate one of their kidneys, but for "emotional reasons," he is reluctant to accept their offers. A third child suffered anoxic brain damage in a drowning accident at age 5. She has been in a persistent vegetative state (PVS) for 21 years and lives in an extended-care facility. Mr. P. considers this daughter "essentially dead," but his wife has not agreed to terminate her life-sustaining therapy. Both parents jointly serve as their daughter's guardian and now agree that a kidney should be retrieved from this child. Because she is in a PVS, they believe she cannot be harmed by the donation as much as their healthy children. But she cannot provide consent either. The transplant surgeon requests an ethics consultation before proceeding. What should the ethics consultants advise?

Response: The case of Mr. P. represents failures in our health care system: the failure to procure enough deceased donor organs, so that we permit, even encourage living donors; and the failure to prevent end-stage renal disease (also known as kidney failure) in the first place.

Mr. P. is lucky because he has two competent adult children who are willing to donate. However, Mr. P. is reluctant and not without reason. It may be that there is a genetic component to his kidney failure. If so, his adult children may want to retain their second kidney to delay kidney failure and their own need for a transplant in the future. It may be that Mr. P's grandchild will suffer kidney failure and need a kidney, but one parent will not have a kidney to spare, having donated to Mr. P. It also may be that he fears the small but real chance of serious peri-operative morbidity or even mortality. ¹

Mr. P. has a third child who is incompetent and will never develop competency. Mr. P. would prefer that the surgeons procure her kidney because he considers her "essentially dead," and, therefore, believes that she cannot be harmed by the procurement in contrast with his healthy children. His wife agrees.

Living donation is morally permissible if the benefits to the donor and recipient outweigh the medical and psychological risks of donation for the donor. The physical risk of harm does not differ between the three children, although how both the donor and the family will experience the harms does differ. If a rare but catastrophic event occurred (e.g., stroke) to either healthy adult donor, the donor's quality of life would be significantly diminished, and life itself may be shortened. Mr. P. and his wife would experience sadness, anger and possible guilt that they asked their child to make this sacrifice. In contrast, if the daughter in PVS were to suffer a stroke, her life may be shortened, although her quality of life might be minimally affected. Moreover, her parents might not suffer any distress.

Regardless of who donates, the transplant offers Mr. P. a large medical benefit. The two healthy adult children may experience great emotional benefit from this opportunity, and the donation may improve family relationships strained by ill health and the demands of care giving. However, the daughter in PVS cannot benefit psychologically. Her inability to experience psychological benefit, but to be at physical risk, makes her donation immoral, because the benefit/risk must be interpreted from the perspective of the donor. ²

That the parents cannot authorize their daughter to serve as a living kidney donor but can authorize termination of life-sustaining treatment may seem incoherent. The difference is that the decision to withdraw life-sustaining treatment is only morally permissible if it is based on the belief that is in their daughter's best interest. ³ It is immoral to withdraw to ease the parents' burdens alone. The authorization to procure a kidney from this daughter is not in her best interest, because she cannot experience psychological benefit. Therefore, it is immoral to use her kidney as a living donor graft, now or in the future, merely to benefit a third-party, even if the third-party is her guardian.

The case would be more challenging if Mr. P.'s wife and two healthy adult children were willing but medically unable to donate because of their own health problems, and the family had turned to the third child as a "donor of last resort." And yet, even in that case, I would argue that it is ethically impermissible to authorize the procurement of her kidney, because it uses her solely as a means. The donation violates her human dignity, because it fails to respect her right to bodily integrity and her right to be valued as an end-in-her-self, even if she cannot demand that these rights be respected.

The ethics consultant should advise Mr. P. that his daughter in PVS cannot morally serve as a living donor. Either of his two competent adult children can morally serve as his living donor, although each would need to undergo a full medical and psychological workup to ensure that there is no medical contraindication and that the decision is voluntary and informed. Alternatively, Mr. P. can continue on dialysis and wait for a deceased donor organ.

Lainie Friedman Ross, MD, PhD

Associate Director MacLean Center for Clinical Medical Ethics Assoc. Professor of Pediatrics and Medicine University of Chicago

Oucome: The ethics committee advised that there was a duty to protect the vulnerable and noted that failure to do so facilitated many of the great crimes of history. Even if done with legal sanction, it said retrieval of the kidney would remain an unjustified assault on a defenseless person who could not benefit from the intervention. The ethics committee's advice was accepted and the daughter's kidney was not retrieved.

Footnotes

¹ Najarian JS, Chavers BM, McHugh LE, Matas AJ. 20 years or more of follow-up of living kidney donors. Lancet 1992;340: 807-810.

² Glannon W, Ross LF. Motivation, risk, and benefit in living organ donation: a reply to Aaron Spital. Cambridge Q Healthcare Ethics 2005;14:191-194.

² Veatch RM. Limits of guardian treatment refusal: a reasonableness standard. Am J Law Med 1984;9:427-468.