CORE Metadata, citation and similar papers at core.ac.uk Provided by e-Prints Soton What does a diagnosis of brain death mean to family members approached about organ donation? A review of the literature Background —What a diagnosis of brain stem death (the term used in the United Tracy Long, RN, PhD, Kingdom) or brain death (the term used in the United States) means to the family C. Psychol, Magi Sque, RN, members of potential organ donors is an important issue to explore as biomedicine PhD, RNT, DipNEd, moves to expand the range of end-of-life technologies that, potentially, blur the Julia demarcation between life and death. Addington-Hall, PhD, Hon Objective —To provide some insights into how a diagnosis of brain stem death or MFPH brain death may be perceived by family members approached about organ donation. University of Southampton, United Methods —A review of the literature regarding organ donation was carried out. Kingdom Results —Although most publications do not focus specifically on the concept of To purchase electronic or print reprints, brain death, those that do so made a valuable contribution, offering potential theo - contact: retical frameworks to aid our understanding of what the diagnosis of death by brain- The InnoVision Group based criteria means to family members of potential organ donors. The diagnosis 101 Columbia, Aliso Viejo, CA 92656 of brain death is intricately linked to the issue of organ donation and may influence Phone (800) 809-2273 (ext 532) or family members’ decision making. Also, the perception that death has occurred (949) 448-7370 (ext 532) differs from one person to another. Fax (949) 362-2049 Conclusions —A sustained increase in the number of organs available for trans - E-mail [email protected] plantation may never be achieved until the concepts of brain death, brain stem death, and now non –heart-beating death (1) are debated more widely within society; (2) a greater degree of consensus is reached within health care; and (3) bereaved family members approached to donate the organs of their deceased relative have a better understanding of what these diagnoses mean. ( Progress in Transplantation . 2008; 18:118-126) Notice to CE enrollees: members approached about organ donation is an A closed-book, multiple-choice examination after this important issue to explore as biomedicine moves to article tests your ability to accomplish the following objectives: expand the range of end-of-life technologies that, potentially, blur the demarcation between life and 1. Identify specific issues pertaining to the literature review death. This review of the organ donation literature on brain death aims to provide some insights into this issue. 2. Discuss the factors why families chose not to donate Researchers from many disciplines (anthropology, 3. Understand how brain death may be perceived by family members approached about organ donation psychology, sociology, nursing, and medicine), policy makers, government bodies, professional organiza - tions, charities, and patient groups have carried out or sponsored research seeking to answer the ever-present rain death, whether it be brain stem death (the question: Why, in the face of generally positive public term used in the United Kingdom) or whole- views regarding organ donation and transplantation, Bbrain death (the term used in the United States), is a are donation rates across the world falling short of prerequisite for heart-beating organ donation and is demand? Chronologically, we see research directed at therefore a fundamental factor in the process of organ different aspects of this question as far back as the and tissue donation for transplantation. Understanding 1970s and continuing up to the present day. Studies how brain death may be perceived by those family have focused on the public’s views of transplantation Progress in Transplantation, Vol 18, No. 2, June 2008 118 What brain death means to family members 1 and the donation of kidneys, public attitudes toward One of the few studies to make an assessment of 2-7 organ donation and transplantation, comparison of the extent of respondents’ knowledge about brain death, 30 donor families and the public regarding organ dona - by using scenarios, was carried out by Franz et al, work - 8 9 tion and its benefits, gifts of body parts, the experi - ing in the United States. Franz and colleagues carried ences of families who donated organs or declined out a cross-sectional telephone survey of 164 next-of- 10-23 organ donation for transplantation, decision mak - kin of potential organ donors. They report that a siz - 24-26 ing and organ donation, factors influencing the able number (no figures provided) of donor partici - 27-29 request for organ donation, and issues surrounding pants were confused about whether their relative was 30-34 death and organ procurement. truly dead, and furthermore, that nondo nating relatives Importantly, one issue that is a consistent, but minor, (n =62) had less understanding of brai n death than did theme within the organ donation research literature donating relatives (n = 102). 30 being referred to, but rarely given any detailed atten - Franz et al went on to ask participants a specific tion until recently, is public concerns regarding the question about brain death with the aim of assessing 10,30,35 diagnosis of death. Specifically the following their knowledge about the diagnosis of brain death. The issue have been identified: the concern that if people question was, If a person is diagnosed as brain dead, is agree to organ donation they may be diagnosed dead a person in a coma or dead? Responses indicated that 36 too soon, the concern that they or their relatives 95% of donor and 97% of nondonor respondents stat - 3,17 would not be dead at the time of organ donation, ed that their relative was brain dead, but that 28% of and the knowledge and understanding of family mem - donor and 45% of nondonor respondents stated that 13,18,21,25,32-34 bers and the public regarding brain death. their family member was in a coma. Nine percent of Most of these studies were not focused specifically on donors and 10% of nondonors stated that they did the concept of brain death, the exceptions being not know. 13 30 32-34 Pearson et al, Franz et al, Siminoff et al, and Respondents were then asked to state whether the 37 Dubois and Schmidt, but they make valuable contri - following statements were “true” or “not true”: (1) butions and offer potential theoretical frameworks to Someone who is brain dead is dead even though his or aid our understanding of what the diagnosis of death her heart is still beating, and (2) It is possible for a by brain-based criteria means to family members who brain-dead person to recover from his or her injuries. have been approached about organ donation. In response to statement (1), 12% of donor families Studies have tended to fall into 2 categories: (1) and 27% of nondonor families responded incorrectly surveys and qualitative studies exploring the level of and 8% and 15%, respectively, did not know. (True is public willingness to donate organs, and obstacles to the correct response.) When asked if they agreed with organ donation and (2) qualitative studies exploring statement (2), 20% of donor and 52% of nondonor the psychosocial factors that may underpin decision respondents incorrectly agreed with this statement, making in relation to organ donation. and 6% and 14%, respectively, did not know. These are important results because they indicate Family Membersʼ Knowledge and that the majority of the respondents in this study said Understanding of the Definition of that they understood brain death, but when questioned, Brain Death and Brain Stem Death “nearly half of donor and over 80% of all nondonor Studies carried out with donating and nondonat - respondents answered one or more questions about 30(p18) ing family members revealed a lack of information brain death incorrectly.” This result calls into ques - 13,25,30 regarding brain death, poor understanding of the tion whether family members who say they understand 29,30 meaning of brain death, dissatisfaction with the that their family member is dead really do understand 25 30 decision made at request, and confusion with other this diagnosis relative to medicolegal criteria. 33 brain conditions such as coma and the persistent veg - Siminoff et al asked a larger sample of family 30-34 etative state. members who had (n =232) or had not (n =171) donated 13 Pearson et al, working in Australia, surveyed 69 their family members’ organs about their experiences donating and nondonating family members about their in the hospital. Siminoff and colleagues assessed family experiences, their perceptions of the care their relative members’ knowledge in relation to brain death. Family received, and any explanations of the underlying diag - members of potential organ donors were interviewed nosis (critical illness), brain death, and organ donation face-to-face and asked about their experience in the that they received from health care professionals. hospital, the family members’ definition of brain death, Although most (80%) felt that brain death was well the meaning that families gave to the diagnosis of explained, only 52% were judged to have a good or brain death, their awareness of the testing procedure to satisfactory understanding of brain death, and 55% determine brain death, and their acceptance and under - would have liked to see diagrams and radiographs to standing of the brain death diagnosis. Accuracy of the 13 aid their understanding. definition of brain death offered by the participants Progress in Transplantation, Vol 18, No. 2, June 2008 119 Long et al was assessed by the research team, but they do not understanding of brain death, and participants’ per - offer the definition they used to make this assessment sonal definition of death.