All families of potential donors aren’t offered opportunity
Executive Summary
The primary ethical consideration when approaching families for organ donation is to ensure that the donation authorization process is voluntary and that it respects the wishes of those who want to donate.
• Current donation authorization practices are generally based on the idea of "dual advocacy."
• In a growing number of cases, the potential donor has already authorized donation through a donor registry.
• It is important that all families of potential donors are offered the donation opportunity.
"Dual advocacy" for donor family and those awaiting transplantation
The primary ethical consideration when approaching families for organ donation is to ensure that the donation authorization process is voluntary and that it respects the wishes of those who want to donate, according to Alexandra K. Glazier, Esq., vice president and general counsel at the New England Organ Bank in Waltham, MA.
Current donation authorization practices are generally based on the idea of "dual advocacy" — to respectfully advocate for the donor and donor family’s interests, as well as the interests of those awaiting transplantation. "This approach is based on the fact that the vast majority of adults support organ donation, and that there are 120,000 people awaiting transplantation," says Glazier.
Glazier says another important ethical consideration is that all families of potential donors are offered the donation opportunity.
Research has shown that practitioners cannot accurately predict which families will want to donate.1 "It would be unethical to deny families the ability to evaluate for themselves information about the potential for donation, including the positive impact on the grief process and on the life of those receiving transplantation," she says.
In a growing number of cases, the potential donor has already authorized donation through a donor registry. "In fact, in the United States, there are now over 110 million registered donors," says Glazier. "Approximately half of the actual organ donors in the United States last year had legally authorized donation themselves."
This has fundamentally changed the nature and purpose of the family approach in those instances, from requesting donation authorization to explaining the donation process. "This process also better aligns the ethical considerations of ensuring donation is voluntary and consistent with the donor’s known wishes," says Glazier.
Potential for unethical practices
The organ donation community is keenly aware that unethical practices involving organ donation are likely to erode public trust in the process, says Randall S. Sung, MD, surgical director of kidney and pancreas transplantation and associate professor of surgery at University of Michigan Health Systems in Ann Arbor, and, thus, are very sensitive to the need to conduct themselves ethically. Most of the major advances in the development of organ donation, such as the recognition of brain death and the advent of donation after cardiac death, received a full vetting from the medical community and general public from an ethical perspective, he explains.
"Nevertheless, the potential for highly unethical practices exists," says Sung. "Where misperceptions among the public persist, they usually focus on fear of organ donors not receiving all the care they could have to save their life."
For this reason, the transplant community takes great pains to make the demarcation between end-of-life care and care of the donor once declared dead very clear and not to be crossed, says Sung.
An exception is sometimes made for donation after cardiac death, in which anticoagulation and vessel cannulation can, on occasion, be given prior to death declaration — but only after families indicate intent to withdraw life support and subsequently consent to organ donation. In one highly publicized case, a recovery surgeon was charged with felony abuse of a dependent adult for ordering and giving a potentially lethal dose of narcotic to a donor who was not declared dead yet (although the surgeon was later acquitted by a jury). "This illustrates how any crossing of the line between care of a living patient and care of a deceased organ donor is very highly scrutinized," says Sung.
It is unethical for organ donation professionals to provide misleading information about the impact of donation in order to obtain consent from families, says Sung. "Although unlikely, any attempt by organ donation personnel to provide information about prognosis for recovery in the case of a potential donor after cardiac death, or to otherwise influence decisions about withdrawal of life support, would be unethical," he adds.
- Siminoff LA, Gordon N, Hewlett J, et al. Factors influencing families’ consent for donation of solid organs for transplantation. JAMA 2001;286:71-77.
- Alexandra K. Glazier, Esq., Vice President/General Counsel, New England Organ Bank, Waltham, MA. Phone: (617) 244-8000. E-mail: [email protected].
- Randall S. Sung, MD, Surgical Director, Kidney and Pancreas Transplantation/Associate Professor of Surgery, University of Michigan Health Systems, Ann Arbor. Phone: (713) 936-7491. E-mail: [email protected]
