The Fallacy of the "Gift of Life"

Abstract

Advances in surgical techniques, pre- and post-operative care, and immunosuppression have improved success rates of many kinds of tissue and solid organ transplantation in both the short and long term. Moreover, transplantation is performed for an ever-increasing array of underlying diseases, conditions, and candidate characteristics--for example, advanced age or alcoholism no longer preclude transplant as they once did. Although policies in this regard vary from one transplant center to another, overall this expansionary trend bears directly on the size of the transplant waiting list: the number of individuals awaiting transplant grows even while the number of available donor organs remains relatively constant. For all organs, the transplant waiting list increased by nearly 64 percent between 1988 and 1994, while available organs increased by only 33 percent.[1] Thus many individuals die before a donor organ becomes available, while the long list almost guarantees that those individuals who do survive are not transplanted until they are very sick, increasing the probability of morbidity and mortality after transplant. The consequences of organ scarcity dominate both lay and medical discussions of transplantation, not only at the policy level, but also among those most immediately involved: donor families, transplant patients and their caregivers, and health care professionals. Lack of donation is frequently identified in public and professional arenas as the most important factor limiting the scope and effectiveness of transplantation technology. This focus on scarcity undergirds the metaphor of the "gift of life" that pervades lay and professional discussions of transplantation, from campaigns to promote donation to efforts to enforce compliance with post-transplant regimens. And it diverts attention from other ethical issues in transplantation, such as selection criteria, retransplantation, and quality of life after transplant.[2] The "Gift of Life" The gift of life metaphor directly reflects the ethic of voluntarism and altruism on which the entire donation system is predicated. Education campaigns identifying organ donation as the gift of life were designed to make the public aware of the good that comes from transplantation and to encourage people to become donors. For years it was believed that if only hospital health care providers would ask eligible families to donate, the overwhelming majority would do so. The assumption has been that awareness of need would be enough to persuade people to donate. Public opinion surveys show that these campaigns have been at least partially effective--over 95 percent of Americans are aware of transplantation and up to three-quarters say they would be willing to donate an organ posthumously.[3] Yet this seemingly overwhelming public support for donation was coupled with a low number of procured organs, leading to the conclusion that the low procurement rate was due to health care providers' failure to request donation from eligible families.[4] A variety of data seemed to support this assessment: wide variations in procurement rates among hospitals, attitudinal surveys of health care professionals that reflected misunderstandings regarding eligibility criteria, legal concerns, and ambivalence toward talking with families about procurement.[5] Recent studies, however, have shown that the major limitation to procuring organs is families' unwillingness to do so when asked in actual donor situations--in fact, less than half donate when asked.[6] Thus while the metaphor may have aided public awareness of the need for organ donation, it has not proven effective in procuring organs for transplantation. Powerful as it is in many ways, we argue that the metaphor of the gift of life rests on a fallacy about gift giving and, in particular, about "acts of charity." In making this argument, we draw not only on the literature about organ donation, but also on our own empirical, ethnographic research on families' responses to requests for organ donation and on patient and family experiences before and after liver transplantation at a major transplant center. …