Fall 2003, Vol. 10, Issue 3
Question: Robert L. contacted the renal transplant coordinator stating that he wished to donate a kidney to his older brother George who was on dialysis for end-stage renal failure. Robert is a 42-year-old mentally retarded man with an IQ between 70 and 80. He lives independently without a guardian and has a job.
Robert's psychologist, who has known him for 10 years, submitted a letter stating that he believed Robert was capable of giving informed consent for the donation. The renal transplant psychiatric social worker found that Robert came from a close-knit family, had a warm relationship with George, and concluded that he was capable of making an informed decision. There were several meetings with the transplant nephrologist. Robert met with him alone as well as with his family. The nephrologist's evaluation concluded that Robert understood that his donation was voluntary and that he was capable of giving informed consent.
On the day of surgery the anesthesiologist, who did not know Robert, was reluctant to provide anesthesia in this circumstance. When the prior evaluations were reviewed with the anesthesiologist, he agreed to proceed but the surgery was canceled because of an infected mosquito bite. To reassure everyone that the donation was appropriate, a psychiatrist who had not previously seen Robert was consulted. This psychiatrist disagreed with the previous evaluations and concluded Robert should not be allowed to donate a kidney to his brother.
How can the physicians determine if Robert's donation is appropriate? How would you advise the kidney transplant team faced with one dissenting opinion?
Response: As the waiting list for organs grows, our society has turned more often to living donors, persons who give one of paired organs, the kidneys, or part of an unpaired organ such as the liver. The problem with living organ donation is that the donors expose themselves to risk of harm. For single kidney donation, the risk of death (0.04% as reported by the Organ Procurement and Transplantation Network 1 ) or serious morbidity is small and the benefits for the donor can be considerable. 2 Still, an otherwise healthy person must undergo major surgery in order to donate and even if things go as well as possible, there is certainly temporary pain, discomfort, disability, lost work or social opportunity, and the risk of living with only one kidney. Nonetheless, living donation is increasingly common and since 2001, the number of living kidney donors has exceeded the number of dead donors. 3
If donors are going to be exposed to the unavoidable morbidity of surgery and the risk of even more serious harm, we want to be sure they give full, informed consent. This means receiving adequate information about the risks, having adequate mental capacity to process that information, and finally, not being coerced or unduly pressured. In evaluating the appropriateness of Robert L. as a donor for his brother George, there is reason for questions about two of these three issues (I will assume that the transplant team has given him enough information). While we are not told specifically why the psychiatrist dissented, the following issues should be considered.
First, was there undue pressure on Robert to donate? Some argue that being a family member, by its very nature, puts one in a coerced position. How can you say no to a family member without being made to feel disloyal or worse? Nonetheless, our society has generally accepted the notion of live donation within families. In fact, we have traditionally been more comfortable with family donation than we have with donation by friends, acquaintances, and certainly, outright strangers (although each of these categories is becoming more acceptable as well.) I believe that the "coercive" aspects of being part of a family are considered by most of us to be part of the perceived obligations that come in many forms simply from being a family member. Of course, there can be coercion beyond that, and the most vulnerable to excessive coercion within families are children or adults who are emotionally, physically or financially dependent.
Robert is not a child. While retarded, he has a degree of social and financial independence. The family is described as close-knit and loving. He seems to have a good relationship with them and his brother, the recipient. Robert himself came forward with the donation offer. Unless the dissenting psychiatrist has information to the contrary, undue coercion does not seem a reasonable justification for denying Robert's request to donate.
The second issue that must be considered is that Robert has some degree of mental retardation. 4 We must ask if he was capable of giving informed consent even though he is able to get along pretty well. He works, lives alone, and from what we know, makes important life judgments every day. We have no information that he has ever been judged incompetent to make important life decisions. He has, from all that we know, a loving and supportive family. To discount his ability to consent to donation, we would have to have specific information about how his intellectual deficits impair his ability to understand the nature of the surgery, its risks, etc. Because the most serious risks (death and disability) are extremely unlikely, the threshold for judging his ability need not be as exacting as it would be if he were facing a high likelihood of serious risk.
The evaluation was quite thorough prior to the second, dissenting opinion and the psychiatrist has not given us any specific information to make us doubt Robert's ability to make the decision to donate and to take responsibility for it. If important new information is brought forward by the psychiatrist (for example, that Robert had revealed that his family had threatened him with rejection, or that Robert thought they could take his kidney without surgery), the team should reconsider. Until the dissenting psychiatrist has provided such information, we can reject his or her opinion.
Stuart J. Youngner, MD
Susan E. Watson Professor and Chair
Department of Bioethics
Case Western Reserve University
Cleveland, OH
Outcome: The patient was subsequently seen by a psychiatrist at another institution who was experienced in the evaluation of potential organ donors. All parties agreed that the decision of this psychiatrist would be determinative. The psychiatrist concluded Robert was capable of making the decision to donate and the kidney transplant was successfully performed.
Footnotes
1 In a three-year period from 1999 to 2001, of 15,782 kidney retrievals from healthy live donors seven deaths were reported for a rate of one death for every 2,255 donors (0.04%).
2 Johnson EM, Anderson JK, Jacobs C, et al. Long-term follow-up of living kidney donors: quality of life after donation. Transplantation 1999;67:717-21.
3 United Network for Organ Sharing (http://www.unos.org/).
4 Consensus Statement on the Live Organ Donor. JAMA 2000;284;2919-26.
in collaboration with
Dartmouth-Hitchcock Medical Center
The opinions expressed in the journal, Lahey Clinic Medical Ethics,
belong to the individual contributors and do not represent the institutional position
of Lahey Clinic on any subject matters discussed.
