AMA Journal of Ethics^®

Case

John is on his family practice rotation and working at an outpatient clinic. One day he sees Ms Smith for a routine medical exam. She has been a patient of the clinic for 7 years, has always been compliant with recommendations, and has no significant past medical history. While reviewing Ms Smith's history with her, John asks if she has any specific questions or concerns. Ms Smith states that she recently saw an ad about organ donation and wanted to know more about becoming a donor. John becomes excited about this question because he knows that there is a shortage of organ donors, and he sees this as an opportunity to educate Ms Smith about this altruistic act. At 30 years old and in good health, Ms Smith is probably an eligible donor, John thinks.

As the conversation progresses, Ms Smith asks John if he has "ever seen organs being removed for donation" and John states that he, personally, has not seen this, but knows that the utmost care is taken to procure the organs. Ms Smith then discloses that she is worried that if she becomes a donor her organs may be taken before she is dead. John assures Ms Smith that this would not happen and that many tests are performed to make sure the patient is dead before organs are recovered. After answering all her questions, John informs Ms Smith that she can fill out the necessary paper work for organ donation in the office. Just as he is about to excuse himself to get her the necessary documentation, Ms Smith states that she is not entirely convinced about being an organ donor. "I'm still unsure—I still need some time to think about it." John is clearly disappointed because he knows how important organ donation is but does not want to pressure Ms Smith into making a decision.

Commentary 2

United States transplantation policy rests on the cornerstone of individual consent. With the exception of taking corneas, people (or their surrogate decision makers) must agree to donate their organs and tissues for transplantation, whether that donation takes place before or after death. This approach has never been successful in fulfilling the ever-increasing need for organs and tissues in this country. More than 80 000 people are listed for transplants at present, and most discussions of transplantation do not fail to mention this yawning need. Even as more donors come forward, more people become eligible for transplantation, widening the gap between need and availability even farther.

One of the key ethical obligations in any system based on consent is the protection of autonomous decision making. For this reason, federal regulations require prior review and approval of virtually all the pharmaceutical research that goes on in this country. Yet there are no parallel regulations with respect to transplant donations. In some states, people may indicate on their drivers' licenses whether or not they wish to be donors after death and no one ever evaluates the rationale for their decision. By contrast, transplant programs do carry out evaluations of living donors—people who want to donate a kidney, a part of their liver, or even part of their bowel to someone known (or even unknown) to them. In this kind of donation, people may expose themselves to real pain and risks for poorly formed reasons, and every transplant program has an obligation to protect against the uninformed assumption of such risk.

Ultimately, of course, people are under no obligation to donate their tissues or organs. As social policy, we have decided that it is better to forgo organs and tissues than to require their donation through compulsory or opt-out systems. It may exasperate some health care workers, but people are under no obligation to accept the arguments that health care workers think are compelling reasons to donate. Sometimes volunteers come forward for reasons of their own; persuasion brings others to the decision. There are various and increasing levels of ethical concern with the methods used to help people reach their decisions: engagement (what's needed to get people's attention), information (what's needed to advise them about the procedures and consequences), undue influence (contextual pressures that dispose someone to a particular answer), and coercion (using structural advantages or power to compel decisions).

In the case at hand, Ms Smith, like many Americans, will not come to a decision about donating organs on the basis of a single conversation. Her decision will take time, no matter what she finally chooses to do. She has brought up the issue, making it fair for the medical student to answer her questions. After the conversation she remains guarded, which means she may not yet have all the information she wants in order to come to a decision. Or she may not yet trust the answers. No health care worker talking to her need worry about undue influence and coercion as long as her questions guide and structure the conversation. One way to avoid these ethical dilemmas—and to build trust—is to work toward answers together. In this case, Ms Smith asks the medical student if he has ever seen organs taken for transplantation. He says he has not, but he assures Ms Smith that the procedure is done with the "utmost care." Maybe he knows this, maybe he doesn't. Either way, it has the ring of a stock answer. He might have done better to say: "Let me find out exactly what's involved and get that information to you." A pamphlet and a conversation about brain death might help resolve Ms Smith's worries about the actual donation process. A conversation that is a mutual exploration and that builds trust will go a long way toward dissolving worries about undue influence and coercion in organ donation.