: Although "brain death" and the dead donor rule—i.e., patients must not be killed by organ retrieval—have been clinically and legally accepted in the U.S. as prerequisites to organ removal, there is little data about public attitudes and beliefs concerning these matters. To examine the public attitudes and beliefs about the determination of death and its relationship to organ transplantation, 1351 Ohio residents ≥18 years were randomly selected and surveyed using random digit dialing (RDD) sample frames. The RDD telephone survey (...) was conducted using computer-assisted telephone interviews. The survey instrument was developed from information provided by 12 focus groups and a pilot study of the questionnaire. Three scenarios based on hypothetical patients were presented: "brain dead," in a coma, or in a persistent vegetative state (PVS). Respondents provided personal assessments of whether the patient in each scenario was dead and their willingness to donate that patient's organs in these circumstances. More than 98 percent of respondents had heard of the term "brain death," but only one-third (33.7%) believed that someone who was "brain dead" was legally dead. The majority of respondents (86.2%) identified the "brain-dead" patient in the first scenario as dead, 57.2 percent identified the patient in a coma as dead (Scenario 2), and 34.1 percent identified the patient in a PVS as dead (Scenario 3). Nearly one-third (33.5%) were willing to donate the organs of patients they classified as alive for at least one scenario, in seeming violation of the dead donor rule. Most respondents were not willing to violate the dead donor rule, although a substantial minority was. However, the majority of respondents were unaware, misinformed, or held beliefs that were not congruent with current definitions of "brain death." This study highlights the need for more public dialogue and education about "brain death" and organ donation. (shrink)
In the dominant metaphor for organ transplantation, the organ is the ultimate gift, the dying donor's life‐giving bequest, conveyed and made possible by a heroic transplant team. The metaphor encourages donation and enforces recipients’ compliance with post‐transplant treatment. It is also inaccurate and sometimes deeply damaging for the recipient.
Medical advances in transplantation techniques have driven an exponential increase in the demand for transplantable organs. Unfortunately, policy efforts to bolster the organ supply have been less than effective, failing to provide a stopgap for ever-increasing numbers of patients who await organ transplantation. The number of registrations on waiting lists exceeded 65,245 in early 1999, a 325% increase over the 20,000 that existed 11 years earlier in 1988. Regrettably, more than 4,000 patients die each year while awaiting transplantation.
: This paper reviews current and suggested policies designed to increase organ donation in the United States and indicates the problems inherent to these approaches for increasing organ donation by African Americans. Data from a population-based study assessing attitudes and beliefs about organ donation among white and African-American respondents are presented and discussed. We pose the question of whether it is reasonable to maintain the existing system or whether we should institute a system that uses policies based on the attitudes (...) and beliefs of a minority group that is in greater need than the majority. In light of the discussion, we suggest that the current policies guiding the organ procurement system are not adequate to address existing concerns within the African-American community and that a different set of assumptions may be needed to drive organ procurement policy. (shrink)
Genomic research projects that collect tissues from deceased organ and tissue donors must obtain the authorization of family decision makers under difficult circumstances that may affect the authorization process. Using a quasi-experimental design, the Ethical, Legal, and Social Issues (ELSI) substudy of the Genotype-Tissue Expression (GTEx) project compared the recall and understanding of the donation authorization process of two groups: family members who had authorized donation of tissues to the GTEx project (the comparison group) and family members who had authorized (...) organ and tissue donations in years previous, who subsequently participated in two different mock-authorization processes that mimicked the GTEx authorization process (the intervention groups). Participants in the comparison and intervention groups were matched on key demographic characteristics.We found that participants in the intervention groups who experienced a mock-authorization process demonstrated better recall of the tissue donation request than members of the comparison group. Our data indicate that the stress associated with the loss of a loved one limited the ability of family members to recall details about the GTEx project. However, we found a similar lack of knowledge in both the comparison and the intervention group participants, suggesting lack of knowledge may be due to the complexity and unfamiliarity of the information presented to them during the authorization process. We discuss these findings in the context of everyday clinical decision making in cognitively challenging conditions. (shrink)
Hundreds of thousands of individuals experience traumatic injuries each year. Some are mild to moderate in nature and patients experience full functional recovery and little change to their physical appearance. Others result in enduring, if not permanent, changes in physical functioning and appearance. Reconstructive plastic surgical procedures are viable treatments options for many patients who have experienced the spectrum of traumatic injuries. The goal of these procedures is to restore physical functioning and reduce the psychosocial burden of living with an (...) appearance that may be viewed negatively by the patient or by others. Even after receipt of reconstructive procedures, many patients are left with residual disfigurement. In some, disability and disfigurement may be so profound that individuals are candidates for vascularized composite allotransplantation procedures, i.e., the transplantation of a vascularized human body part containing multiple tissue types as an anatomical and/or structural unit. This narrative review paper summarizes the literature on the psychosocial burden experienced by those who have visible disfigurement. While many of these individuals experience stigma and discrimination, relatively few studies have employed a stigma framework to understand the psychosocial sequelea. This paper briefly addresses this framework. Last, particular focus is given to the psychosocial issues of individuals with particularly severe injuries who are potential candidates for VCA procedures. (shrink)