Progress in Transplantation

The term noncompliant patient may evoke the image of a difficult, demanding, and troublesome patient. In the transplant environment, patients who are unable or unwilling to adhere to a prescribed plan of treatment raise a number of medical, ethical, and other concerns with respect to individual patient care. Their behavior also raises questions of justice and fairness, especially in light of the limited numbers of transplantable organs available and the very large number of people who are waiting for a transplant. Patients who are unable to do what is necessary to maintain a transplanted organ may create a moral dilemma for the healthcare providers who treat them. This article will (1) attempt to develop a more complete understanding of “patient noncompliance,” (2) address concerns that arise both before and after the transplant, and (3) suggest strategies for dealing with noncompliant patients.

The Questionnaire on Prolonging and Shortening Life was developed to assess the views of medical personnel regarding brain death, organ procurement policies, and related issues. The questionnaire was completed by 189 transplant physicians, 197 clinical coordinators, 150 medical students, and 70 nursing students. Ninety-five percent supported the so-called dead donor rule. What this rule means in practice appeared unclear among the population. More than 60% supported procuring organs from anencephalic and “higher brain-dead” patients, although patients in both groups are not dead by current legal standards. Performance on items relating to so-called non–heart-beating organ donation suggested that 75% of the group do not support non–heart-beating organ donation without assurance that the donors are brain-dead before procurement begins. Given that current recommendations to increase organ donation look to non–heart-beating organ donation rather than to anencephalic patients and those in a persistent vegetative state, these findings suggest that further ethical discussion and analysis are urgently needed.

Advances in organ recovery and transplantation have provided us with the skills and opportunity to save, extend, and improve the quality of life for many. But with these opportunities have come challenges to redefine our practice and relationships with donor and recipient families. Although most donor families and transplant recipients receive some information about each other, many still do not. In the past, communication between donor families and recipients has been anonymous and highly controlled, with much inconsistency among and within the transplant community, leaving many involved in the process confused and frustrated. Transplant professionals may wish to consider critically the common ethical values of autonomy, beneficence, salience and benefit of choice in making decisions about information shared with and contact between donor families and recipients.

Living related donors are an increasing source of organs for transplantation. Although the use of this type of donation is widespread in the United States, the practice of placing donors at risk for injury or illness without physical benefit can create ethical dilemmas for health professionals dedicated to healing and avoiding harm. It is important for transplantation professionals to be familiar with the risks and benefits associated with living donation within their own specialty area. Placing living donation within an ethical framework can allow for careful consideration and guide decision making in each individual case. Drawing upon the literature for examples from several of the transplantation specialty areas, this article reviews some of the risks and benefits associated with living donation and identifies the limits of the utilitarian and casuistic ethical frameworks in guiding decision making in living donation. An ethical framework of virtue-principlism is offered as one which is grounded in an understanding of what it is to be human and in the nature of the health professional–patient relationship.

Improvements in transplantation techniques have resulted in a demand for transplantable organs that far outpaces supply. Present efforts to secure organs use an altruistic system designed to appeal to a public that will donate organs because they are needed. Efforts to secure organs under this system have not been as successful as hoped. Many refinements to the altruistic model have been or are currently being proposed, such as “required request,” “mandated choice,” “routine notification,” and “presumed consent.” Recent calls for market approaches to organ procurement reflect growing doubts about the efficacy of these refinements. Market approaches generally use a “futures market,” with benefits payable either periodically or when or if organs are procured. Lump-sum arrangements could include donations to surviving family or contributions to charities or to funeral costs. Possibilities for a periodic system of payments include reduced premiums for health or life insurance, or a reciprocity system whereby individuals who periodically reaffirm their willingness to donate are given preference if they require a transplant. Market approaches do raise serious ethical issues, including potential exploitation of the poor. Such approaches may also be effectively proscribed by the 1984 National Organ Transplant Act.

Xenotransplantation is a potentially promising but exceedingly complex issue. It is critical that this subject be discussed within and outside the transplant community. The need for an expanded organ supply is urgent, but the scientific and ethical positions are complex. This article reviews the current status of xenotransplantation, including the potential benefits and risks; discusses multiple ethical issues; and makes recommendations for the transplant coordinator.

Although heart transplantation has become recognized as a viable option for the treatment of incorrectable heart disease in infants and children, its application becomes less clear in infants with potentially serious neurologic impairment. The following case study illustrates one transplant team's approach to decision making in the case of an infant born with a chromosomal deletion syndrome.

Ethical issues in pediatric heart transplantation are encountered daily in the work of the transplant coordinator. Issues such as use of resources in a just world, less-than-ideal candidates, and informed consent are challenges to the transplant professional. This article explores those issues using the language of ethics to analyze the conflicts they present. Resolutions will not necessarily be offered, as there are no simple answers.

The medical disciplines of organ and tissue donation and transplantation present many life-enriching benefits but are often fraught with ethical ramifications. This article examines the current and potential ethics resources of US organ procurement organizations (OPOs) and transplant centers (TCs). The organizations were surveyed regarding established ethical guidelines and the frequency with which ethical issues in need of resolution were encountered. All OPOs and 76% of TCs reported confronting ethical issues in the workplace. A majority of those surveyed in TCs and OPOs felt adequately prepared to face the ethical challenges of their jobs. More than half the surveyed personnel had some type of ethics training, but only 25% of the TC staffs and 16% of the OPO staffs' training was during the survey year. The potential for ethics-related interactions for TC and OPO staff must be recognized and adequate preparatory measures provided.

The number of patients being listed for heart transplantation continues to escalate. Despite a variety of attempts to increase organ donation, the number of available donor hearts remains unchanged. This imbalance of supply and demand creates medical rationing of donor organs. When the success of heart transplantation became apparent, selection criteria was relaxed, further increasing the disparity between the numbers of donor hearts and potential recipients. Decreasing the demand by tightening the selection criteria is the most reasonable solution at this time.