In the past, ethical and policy issues in kidney transplantation focused on the donation and allocation of organs from deceased donors because they represented most available kidneys. The focus on the supply of organs from deceased sources was influenced by advances on two fronts. First, the ability to successfully perform allografts meant that the demand for organs to transplant increased dramatically. Second, discussion and debate about definitions of death and making decisions at the end of life inevitably turned to include the procurement of solid organs from deceased donors. Therefore, the policy environment and ethics debate focused on two main issues: when is it acceptable to remove organs from patients after they have died, and how should we allocate the very scarce resource that these organs represent?

Obtaining organs from deceased donors has been governed by strict rules (both policies and law) created to ensure that important ethical principles are respected. These include the primacy of respect for individual autonomy and making medical decisions that are in the best interests of patients. In application, these principles affect how we should think about the care of patients at the end of life, making sure to respect the decisions of individuals or their proxies about donation after death.

When it comes to the medical care of patients at the ends of their lives, it is crucial that decisions about care are not compromised or influenced by motives to procure organs for transplant. Any mixing of motives both fails to serve the best interests of patients and can only undermine trust on the part of the public and society in health care and the health professions. To prevent even the perception of questionable motivations, firewalls have been erected through policies and guidance from the United Network for Organ Sharing (UNOS) and Organ Procurement and Transplant network (OPTN) (see Chapter 4) to ensure that the health care teams caring for living patients cannot and must not be involved in the procurement of organs after a patient has died. Such separation of the care teams and procurement teams goes a long way toward ensuring patients and the public that the medical care they receive will not be influenced by the status as organ donors.

Even with rules in place, we know that certain groups-particularly African Americans-continue to worry that they will receive different care (meaning less aggressive) if they are known to be potential organ donors. These concerns persist despite concerted efforts on the part of organ procurement organizations (OPOs) and the transplant community at large to ensure the public that their care will not be compromised by their decision to donate organs after they die. It is easier to understand the legacies of mistrust when one considers the past treatment of African Americans at the hands of the majority population in the United States, including a checkered past when it came to medical research as well as access to clinical care.

A second major ethical issue in obtaining organs from deceased donors is the use of various definitions of death in the context of organ donation. From the beginnings of transplantation, deceased donation has lived by the so-called dead donor rule. As its name suggests, the dead donor rule requires that the donor be dead before his or her organs are removed. Because organs for transplantation must continue to be perfused up to or close to the time of their removal, traditional definitions of death involving the cessation of respiration and circulation, or whole-body death, may render organs unusable. These two requirements pose an obvious conflict, which required new definitions of death to be agreed on and applied in order for transplantation from deceased donors to occur.

The need to resolve this conflict prompted a focus on brain-based definitions of death, which allow for death to be declared based on the cessation of certain brain functions as measured by objective criteria (see Chapter 4). Thus, a patient could be declared dead even though circulation could be continued by the use of mechanical ventilation. Death by brain criteria, or so-called brain death, has been adopted in every state in the United States and in many countries around the world, so that death can be declared by either whole-body or brain criteria. Death by brain criteria is applied in situations outside of organ donation, of course, but its importance in deceased donation is clear.

Even though it has been widely adopted in medicine and law, death by brain criteria remains controversial. Because it relies to a great extent on criteria adopted by the medical community, it is a created standard unlike the more objective criteria of whole-body death. In addition, because it is a socially constructed definition of death, the brain criteria standard sometimes comes under challenge on the grounds that as we learn more about brain physiology and function, the lines are less clear for determining when irreversibility of specific brain function occurs. Given the importance of the dead donor rule, it is critical that there be clarity about when death occurs. Just as some members of the public are concerned they will not receive adequate medical care if they are known to be organ donors, there is concern and misunderstanding that cuts across all groups about the criteria applied for pronouncing death in the context of organ donation.

Even with something like a consensus approach to brain-based definitions of death, there are remaining ethical issues in deceased donation, centering on the decision to donate. Ethically, the decision to donate must be fully voluntary and preferably made by the individual himself or herself; this is known as first-person consent and is usually indicated by some form of advance directive. This can include notation on a driver’s license-now recognized by nearly half the states in the United States. If no such first-person consent is possible, consent of the family is sought. Concerns arise when family members are not in agreement about an individual’s decision to donate, or when members of families do not agree with each other. These disagreements
often become the domain of OPO staff and hospital ethics committees, who do their best to resolve conflicts without resorting to the legal standing of advance directives.