What Does a Diagnosis of Brain Death Mean to Family Members Approached About Organ Donation? a Review of the Literature

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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. The authors also presented 3 33 within the article. scenarios designed to measure participants’ “personal Most participants (67.2%) gave a partially correct assessment of whether or not a person is dead” and definition of brain death, and 28.3% gave a complete - their willingness to donate organs depending on the 34 ly correct definition of brain death. Of the 385 family medical condition indicated in the scenarios. members who gave a completely or partially correct Three scenarios were presented to participants: definition of brain death, only 61 (15.8%) equated brain Scenario 1: A 22- or 70-year-old is in the hospi - death with death. Consistent with findings from Franz tal. ( Two ages are listed in the scenarios. Participants 30 3 33 et al and the Gallup Organization, Siminoff et al were randomly sampled as to which age they would found that a sizable number of participants (30%) agreed hear. This variation was done to assess whether the with the statement that a person is dead only when the age of the patient indicated in the scenarios might heart has stopped beating. Siminoff agrees with Franz play a part in participants’ responses. It did not. ) This 30 et al that a significant number of family members of patient is on machines (sometimes called mechanical potential organ donors are confused about the term support or life support) that keep the heart and lungs brain death, but she reports that the lack of under - working. The patient’s brain no longer functions at standing did not affect donation decisions. One hun - all—there is no brain activity and no brain waves. dred forty-five of the 232 donating families agreed to (This scenario fulfills criteria for brain death in the donation, even though they believed the patient to be United States. ) alive when diagnosed brain dead. Scenario 2: A 22- or 70-year-old is in the hospital. 33 Siminoff et al suggest that the term brain death The patient is on machines that keep the heart and lungs has a variety of meanings in everyday speech, only working. This patient’s brain is so severely damaged one of which is that someone is dead according to neu - that he/she will never recover. The patient will not rological criteria. It may also indicate someone who is wake up and will not eat or breathe on his or her own. “severely brain injured” or be applied to “a person who However, there are still some brain waves left. ( This sce - 33(p224) is unaware of what is happening around him/her.” nario fulfills brain stem criteria in the United Kingdom, 33 Siminoff and colleagues suggest that these alterna - but would not be accepted in the United States. ) tive meanings undermine the public’s understanding Scenario 3: A 22- or 70-year-old is in a nursing of the medical meaning of this term. These authors home for 5 years after a severe brain injury. This patient recommend that when approaching family members is not on any life support machines and can breathe about organ donation, health professionals should without a machine. However, the patient does need to “explore” what the family understands about the term be fed by a tube. The patient will not wake up and will brain death and what implications it has for the fami - never respond to people or things around him/her. ly. Does the family think the patient is beyond hope There are still some brain waves left. ( This patient is in and will not recover? Does the family think the patient a persistent vegetative state and would not be accept - is actually dead? These assessments are “more impor - able for organ donation in either the United Kingdom tant” than if the family can recite a correct definition or the United States. ) of brain death. Discussion that assesses the individ - Participants were asked for their assessment as to ual’s definition of death is therefore recommended. whether the patient in these scenarios was dead or alive or “as good as dead” and how willing they would Beliefs About the Determination of Death be to donate organs from this patient. Participants’ How do people determine death? In the study by responses were compared to see if they demonstrated 33 Siminoff et al, it was reported that 30% of their sam - a consistent or illogical pattern of classification across ple stated that death was determined by the absence of the 3 scenarios. The pattern of classification was deemed 30 a heartbeat. Seven years after Franz et al, Siminoff et inconsistent/illogical if participants classified a patient 34 al used scenarios to assess families’ knowledge in with more intact brain function as dead and a patient relation to brain death compared with the medicolegal with less intact brain function as alive. The authors 34 definition of death. Siminoff et al carried out a cross- were not as interested in whether participants made a sectional telephone survey with 1351 Ohio residents correct classification per medical criteria as they were over the age of 18, using the same methods as Franz interested in personal beliefs about when death occurred. 30 et al had used. The specific aim of this study was to Only 29.4% (n =399) in fact correctly classified a per - examine public attitudes and beliefs about the deter - son as dead or alive in accordance with current med - mination of death. A survey instrument was developed ical criteria and the law in the United States. from information gained in 12 focus groups and includ - Scenario 1: 86.2% of 1351 respondents classified ed questions about attitudes toward organ donation the brain-dead person as dead, and 96.9% of respon - and transplantation, trust in the health care system, dents were willing to donate organs from this person.

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Scenario 2: 57.2% of 1351 respondents classified that instead of participants’ views embracing the notion the severely brain-damaged person on mechanical of “the gift of life,” which these authors describe as a support as dead, and 95.6% of respondents were will - dominant discourse in relation to organ donation, the se ing to donate organs from this person. participants may be more influenced by the “sacrifice” Scenario 3: 34.1% of 1351 respondents classified that is needed to facilitate organ donation—the sacrifice this person in a persistent vegetative state as dead, and of the unmarked, viable-looking body to what partici - 94.4% of respondents were willing to donate organs pants perceived to be a potentially mutilating donation from this person. operation. The issue of how the body looks when a These results suggest that participants have a dif - diagnosis of death based on brain criteria has been 10,14,21 ferent concept of death than the present medical criteria, made has been reported in other studies. although the lack of knowledge about the medicolegal definition of brain death is clearly a factor. The fact The View of the Body 10 that a sizable number of respondents were willing to Pelletier explored donating families’ experiences donate the organs of people who are not legally dead of the donation process and their perceptions of stress - is of specific importance and appears to be related to ful situations within it. Pelletier carried out semistruc - issues surrounding quality of life. A complicating issue tured interviews with 7 family members who had agreed for this study though is the hypothetical nature of these to organ donation. Pelletier identified 3 stages in the questions and the fact that although public surveys organ donation process: the anticipation stage, the report the willingness of people to donate and positive confrontation stage, and the postconfrontation stage. 3,38,39 attitudes toward transplantation, when people are in She reports that during each stage family members a position to donate organs, a large percentage do not confront stressful situations and that the most stressful donate, therefore calling into question the use of a log - situation in the confrontation stage was the diagnosis 11 ical/illogical response frame for these scenarios. of brain death. Specifically, 5 family members were (Refusal rates in the United States are approximately concerned that health care professionals did not explain 31,32 50%, and in the United Kingdom 41%, increasing sufficiently, or tell them “anything about [the meaning 41 to 70% in minority ethnic groups. ) Research has of] brain death.” Pelletier reports that a second factor indicated that decision making related to organ dona - that added to family members’ perceived stress were 20 tion is neither consistent nor logical. signs of viability, such as breathing or a beating heart. 10 Pelletier states that family members experienced Families Who Chose Not to Donate cognitive dissonance as a result of having to accept brain In one of the few studies applying a qualitative death as being congruent with personal knowledge of, 20 10 paradigm of investigation, Sque et al carried out a beliefs about, and experiences with death. (Cognitive cross-sectional study exploring the experiences and dissonance is described as an emotional state set up perspectives of family members who declined organ when 2 simultaneously held attitudes or cognitions are 20 donation. Sque et al interviewed 26 family members inconsistent or when there is a conflict between beliefs of 23 potential organ donors. All had declined organ and overt behavior. The resolution of the conflict is donation. Of the 23 deceased, 9 had expressed a posi - assumed to serve as a basis for attitude change in that tive view about donation while alive, 7 held a negative belief patterns are generally modified so as to be con - 42 view, and the views of 7 were unknown to the family sistent with behavior. ) Pelletier therefore links the member tasked with decision making. In relation to cognitive dissonance experienced by families to (1) a the family members: 12 were positive in regard to dona - lack of information provided by health care providers, tion, 9 were negative, 4 were ambivalent, and the view s (2) personal beliefs, knowledge, and experience of 40 of 1 were unknown. New et al report that in 95% of death, and (3) the signs of viability (of the body). cases where the family knows that the views of the deceased were pro-donation, donation would occur. Dissonance, Conflict, and Anxiety as Therefore in a hypothetical situation where the views Outcomes of Donation Decision Making of the decision maker matched that of the deceased, The issue of dissonance stimulated during the logically, one would expect a positive outcome, that organ donation process is articulated in work carried 20 14 is, donation. Sque et al reported that in 6 cases of out in the United Kingdom by Sque. In one of the few 10 positive pairings, no donation took place. studies that offers a theoretical framework (Pelletier, 21 7 Therefore logic and even an intention shared with Haddow, and Sanner, reported later, offer other the - a family to donate is not the determining factor in all oretical perspectives) in which issues fundamental to cases. A nondonation in the scenario reported by Sque the decision making and subsequent bereavement of 20 14 et al was linked to participants’ reluctance to relin - donating family members were investigated, Sque quish their guardianship and ability to protect the body, explains families’ donation experiences as revolving 14 concerns about the donation operation, and the issue around a process of conflict and resolution. Sque

Progress in Transplantation, Vol 18, No. 2, June 2008 121 Long et al

22 developed the Theory of Dissonant Loss, which is Haddow attributes this lack of uncertainty to the defined as follows: “A bereavement or loss that is fact that respondents had articulated a moment of characterized by a sense of uncertainty and psycho - social death before medical confirmation of brain stem logical inconsistency. The loss is assured but the death due to their prior knowledge of the term brain 15(p1367) effects of the loss are unknown.” stem death gained from television dramas such as The theory identifies and illustrates 11 categories “ER,” “Holby City,” and “Casualty.” This knowledge “that describe participants commonly constructed underpinned their understanding of the diagnosis. One 15(p1361) realities of the donation experience.” These cate - respondent, when asked what he understood by the gories were The last time we were together, Finding diagnosis “made a cutting motion at the back of the 22(p100) out something is wrong, Waiting for a diagnosis, neck demonstrating severance of the spinal cord.” 22(p97) Hopes and expectations, Becoming aware that things Haddow argues that respondents held either a are going wrong, Realization of death, Confirmation Cartesian dualist perspective that separates the self of brain stem death, Donation decisions, Saying good - and the body or a holistic perspective “that stresses the bye, What do we do now? and Dealing with grief and inter-connected nature of the self and body.” 22 donation. These categories offer a sequential descrip - Haddow makes an interesting comparison between tion of particular behaviors that were acted out during those participants (n = 7) who had some form of med - each phase of the donation experience. During the ical background and those who did not. She reports “Confirmation of brain stem death” phase, Sque and that “some” of those with this background tended to 15 Payne describe how participants, even though they view the body of the deceased “as an empty car” and understood that their relative was dead (this was usu - that therefore the parts could be legitimately removed. ally based on some personal interpretation of a change This automotive theme is related to the Cartesian in the patient’s condition, or just a feeling), experi - dualist representation of the body/self divide, a view, enced conflict due to the “lack of external signs to reflect Haddow says, that dominates Western medicine 14 10 the loss of life.” Therefore Sque, as did Pelletier, today, and further compares it to a more holistic view 22 linked conflict to the signs of viability as well as other (proposed by Turner, cited in Haddow ) that we are issues, such as families needing to have a specific time [sic] our bodies. 22 of death confirmed, family members not understanding Haddow initially uses this concept to compare the meaning of brain stem death and the testing pro - those with a medical background and those with no cedures necessary for it, and fear for what might take medical background, suggesting that those who hold 14,15 place at the time of the organ donation operation. this view about the body experience less conflict or 21,22 Haddow offers a further theoretical perspective anxiety about the decision to donate and what organs around the experiences of family members involved in are to be donated. Those holding a more holistic decisions regarding organ donation. Although she dis - embodied view of the body “articulated powerful fears 10,11 14 agrees with the findings of Pelletier, and Sque that about whether the donation process would mutilate 22(p108) families lack understanding of brain death, and that the body or cause some form of disrespect.” She the sight of a viable body contributes to conflict, or undermines the use of the dualistic and holistic per - dissonance, she does agree that making donation deci - spectives of the self and body by saying that “One 21,22 sions causes anxiety and conflict. should not over emphasize the division between holis - 21,22 Haddow carried out semistructured interviews tic and dualistic embodiment, as such metaphors and 22(p105) with 19 members of 15 donor families in Scotland. representations are entwined.” Furthermore, there 22 The results published in Haddow focused on the fam - were exceptions to the medical/dualistic and nonmed - ilies’ beliefs about death, the dead body, and bond s ical/holistic portrayal as Haddow offers quotes from a with the deceased and whether these beliefs affected respondent that she has categorized as medical 22 the decision made or the organ donated. Haddow [Cartesian] who clearly indicated that her niece’s also explored whether the families thought that death organs were part of her niece (holistic perspective) caused a “disembodiment,” which she defines as “a and that through their donation she (the niece) would 22 person’s experience of the body and whether individ - live on. Haddow goes on to say that the newly dead uals feel they have a body, or the alternative of whether body remains a powerful representation of self, an 22(p96) a person feels they are a body.” Haddow states externalization of self, and that initial refusal for organ that in this study, and contrary to other findings of donation (as happened in 4 cases) was a result of this 10 14 15 Pelletier, Sque, and Sque and Payne, the sight of a ongoing view of self. viable body was not related to confusion about whethe r 22(p102) death had or had not occurred. Haddow com - The Ongoing View of Self 4 ments that “despite the ambiguity of the dead body’s Sanner, carrying out work in Sweden, offers a appearance, there was no uncertainty about brain stem psychological perspective on why this view of self death evidenced in this study.” might influence acceptance or disagreement with

Progress in Transplantation, Vol 18, No. 2, June 2008 122 What brain death means to family members organ donation by highlighting “motive complexes” were the illusion of lingering life, protection of the 4 in relation to decision making about organ donation. value of the individual, distrust, anxiety, and alien - (A motive complex is a set of reactions that motivate ation, respecting the limits set by nature or God, altru - 5 5 or demotivate potential behavior.) ism, and finally rationality. Sanner states that the Sanner’s work was carried out with members of most common motive complex shown by 35 of the 38 the public almost 20 years ago. This places some lim - interviewees was the illusion of lingering life, which itations on the findings, as the world literature has she interprets as “an effect of the common death anx - 5(p1147) indicated that there is no guarantee of donation based iety defence called the feeling of immortality.” on public views. A further consideration is that when This feeling reflects an inability to imagine not expe - these data were collected transplantation was still riencing anything when dead. The illusion of lingering 4(p287) “considered a new venture,” and a controversial life defines a reaction to potential postdeath proce - one due to the limited life expectancy of recipients at dures whereby “the dead body was ascribed qualities that time. that only a living individual possesses,” with the con - These considerations aside, the theoretical frame - sequence that “what is done to the dead person is felt 5(p1147) work that Sanner presents and that she links to deci - as if done to a living individual.” Cutting the body, sion making about postdeath procedures on the body for example, to remove organs for donation purposes 7(p143) offers a different perspective than those already dis - causes discomfort. Sanner says that “only when cussed and one that may throw some light on psycho - the psychological discomfort is weak does the logical factors that underpin people’s view of death strength of altruism and rational deliberations based and what death means to them by looking at post - on empirical facts seem to have any significance for death practices. the willingness to donate.” Sanner’s baseline data, from which she has written The illusion of lingering life could go some way to 4-7 extensively, were collected in 1988 when she sent a explain the view of self extending after death, as dis - 22 24-item questionnaire to an age-stratified sample of cussed by Haddow and also the cognitive disso nance, 10,14 1000 residents aged 18 to 29 years, 700 residents aged conflict, and anxiety discussed by other authors as 30 to 59 years, and 250 residents aged 60 to 75 years despite the diagnosis of death based on brain criteria (N = 1950). The response rate was 65% for each certifying death, the family member may continue to group, giving a final sample size of 1261 residents. see the body as alive because it looks alive. Therefore, This survey sought to quantify public views, and showed what the family member sees and feels (emotionally, that although 84% of the population would accept an cognitively, metaphorically, spiritually, or pragmati - autopsy and 80% would sanction a relative’s autopsy, cally), at the point of the brain-based diagnosis of only 62% would donate their own organs, and even death may influence the decisions they make regard - fewer, 39%, would sanction the use of a relative’s organs ing organ donation. for transplant operations. Anatomic dissection (donat - ing the whole body for medical science after death) Non–Heart-Beating Donation was the least popular postdeath procedure, with only Non–heart-beating donation was the norm before 15% saying they would sanction this for themselves. the introduction of the diagnosis of brain stem death 4 Sanner identified particular “discomfort rea c- or brain death, and it may be argued that non–heart- tions” in relation to postdeath procedures and suggests beating donation mimics a more natural death in that that people with intense discomfort reactions tended heartbeat and respiration are seen to have ceased. to ignore or suppress positive motives toward donating The procedure for non–heart-beating organ dona - organs. It is these discomfort reactions that Sanner’s tion, however, also has the potential to confront the 43 later work aimed to explore. family with a paradoxical death. If a non–heart-beat - 5 In response to a survey of 400 people, Sanner inter - ing donor is to donate lungs, kidneys, or a liver, the viewed 38 individuals who indicated that they were pos - individual’s heart is allowed to cease for a pre-agreed itive (n = 22), negative (n = 13), or undecided (n = 3) period of time (as per guidelines, which can be a s 44 about organ donation. Sanner identified 600 statements short as 2 minutes duration), after which the deceased that referred to what may or may not be done to the body is cannulated so that the organs can be perfused with after death, and after content analysis of these state - preservation fluid before organ removal. (There are ments, she constructed 20 “motive” categories. These specific and separate guidelines for the treatment of categories were analyzed to “discern psychologically controlled and uncontrolled non–heart-beating dona - meaningful reaction patterns” by applying a frame of tion. Patient selection is based on the Maastricht clas - 45 reference based on psychodynamic defense theory. This sification. ) Perfusion may result in the heart beating 5(p1144) 44 analysis resulted in 6 central motive complexes. and neurological stimulation, and as these patients The 6 motive complexes underpinning agreement have not been diagnosed dead by brain-based criteria, or disagreement to postdeath procedures on the body are they dead? Could family members see them as

Progress in Transplantation, Vol 18, No. 2, June 2008 123 Long et al having suffered a cardiac arrest? Could this use of the 7. Sanner M. People’s attitudes and reactions to organ donation. Mortality . 2006;11(2):133-150. newly dead actually end up lowering donation rates? 41 8. Batten HL, Prottas JM. Kind strangers: the families of organ The Potential Donor Audit indicated that the refusal donors. Health Aff (Millwood). 1987;6(2):35-47. rate for non–heart-beating organ donation was 45% of 9. Murray TH. Gifts of the body and the needs of strangers. Hastings Cent Rep. 1987;17(2):38-38 518 potential donors, which is close to the 40% refusal 10. Pelletier M. The organ donor family members’ perception of rate of 3397 potential donors for heart-beating dona - stressful situations during the organ donation experience. J tion. This result suggests that there are also barriers to Adv Nurs. 1992;17(1):90-97. 11. Pelletier M. 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Southampton, United Kingdom: University of Southampton; 1996. Despite attempts to separate the diagnosis of 15. Sque M, Payne S. Dissonant loss: the experience of donor brain death from the process of organ donation and relatives. Soc Sci Med . 1996;43(9):1359-1370. transplantation, the introduction of the concept of 16. Verble M, Worth J. Dealing with the fear of mutilation in the donation discussion. J Transpl Coord . 1999;9(1):54-56. brain death into legislation triggered a true revolution 17. Verble M, Worth J. Fears and concerns expressed by families during the 1970s, which was decisive in establishing in the donation discussion. Prog Transplant. 2000;10(1):48-53. transplantation programs. Despite this legislation hav - 18. Sque M, Long T, Payne S. Organ and tissue donation: Exploring the needs of families. http://eprints.soton.ac.uk ing been in place for approximately 30 years, there 46 /11140/. Accessed February 24, 2008. are, according to Matesanz “still acrimonious religious, 19. Sque M, Long T, Payne S. Organ donation: key factors influenc - political and pseudoscientific polemics kindled by this ing families’ decision-making. Transplant Proc. 2005;37(2): 543-546. concept” [brain death] in those countries where it is 20. Sque M, Long T, Payne S. Why relatives do not donate being initiated or modified. organs for transplant: “sacrifice” or “gift of life.” J Adv Nurs. A sustained increase in the number of organs avail - 2008;61(2):134-144. 21. Haddow G. Donor and nondonor families’ accounts of com - able for transplantation may never be achieved until munication and relations with health care professionals. Prog the concepts of brain death, brain stem death, and now Transplant. 2004;14(1):41-48. non –heart-beating death (1) are debated more widely 22. Haddow G. The phenomenology of death, embodiment and organ transplants. Soc Health Illness. 2005;27(1):92-113. within society; (2) a greater degree of consensus is 23. Long T, Sque M, Payne S. Information sharing: its impact on reached within health care; and (3) bereaved family donor and nondonor families experiences in the hospital. members approached to donate the organs of their Prog Transplant . 2006;16(2):144-149. 24. Radecki CM, Jaccard J. Psychological aspects of organ dona - deceased relative have a better understanding of what tion: a critical review and synthesis of individual and next-of- these diagnoses mean. kin donation decisions. Health Psychol. 1997;16(2):183-195. 25. Burroughs TE, Hong BA, Kappel DF, Freedman BK. The stability of family decisions to consent or refuse organ dona - Financial Disclosures tion. Would you do it again? Psychosom Med. 1998;60(2): Funding for this review of the literature was through a 156-162. fellowship at the School of Nursing and Midwifery Univer - 26. Martinez JM, Lopez JS, Martin A, Martin MJ, Scandroglio B, sity of Southampton, United Kingdom. Martin JM. Organ donation and family decision-making within the Spanish donation system. Soc Sci Med. 2001;53:405-421. 27. Siminoff LA, Arnold RM, Caplan AL. Asking for altruism References when death occurs: who asks for organ donation and why? 1. Moores B, Clarke G, Lewis BR, Mallick NP. Public attitudes Transplant Proc . 1996;28(6):3632-3638. toward kidney Transplantation. Br Med J. 1976;1(6010): 28. Gortmaker SL, Beasley C, Sheehy E, et al. Improving the 629- 631. request process to increase family consent for organ dona - 2. Prottas JM. Encouraging altruism: public attitudes and the tion. J Transpl Coord. 1998;8(4):210-217. marketing of organ donation. Milbank Mem Fund Q Health 29. DeJong W, Franz HG, Wolfe SM, et al. Requesting organ Soc. 1983;61(2):278-306. donation: an interview study of donor and nondonor families. 3. Gallup Poll surveys views on organ donation. Nephrol News Am J Crit Care. 1998;7(1):13-23. Issues. 1993;7(5):16,19. 30. Franz HG, DeJong W, Wolfe SM, Nathan H, Payne D, Reitsma 4. Sanner M. A Comparison of public attitudes toward autopsy, W, Beasley C. Explaining brain death: a critical feature of the organ donation, and anatomic dissection: a Swedish survey. donation process. J Transpl Coord. 1997;7(1):14-21. JAMA . 1994;271(4):284-288. 31. Siminoff LA. American attitudes and beliefs about brain 5. Sanner M. Attitudes toward organ donation and transplanta - death. In: Youngner SJ, Arnold RM, Schapiro R, eds. The tion: a model for understanding reactions to medical proce - Definition of Death: Contemporary Controversies . Baltimore, dures after death. Soc Sci Med. 1994;38(8):1141-1152. MD: The Johns Hopkins University Press; 1999:183- 193. 6. Sanner MA. Exchanging spare parts or becoming a new per - 32. Siminoff LA, Gordon N, Hewlett J, Arnold RM. Factors son? People’s attitudes toward receiving and donating organs. influencing families’ consent for donation of solid organs for Soc Sci Med . 2001;52(10):1491-1499. transplantation. JAMA . 2001;286(1):71-77.

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33. Siminoff LA, Mercer MB, Arnold RM. Families understand - Give and Take: Improving the Supply of Organs for Trans - ing of brain death. Prog Transplant. 2003;13(3):218-224. plantation. London, England: Kings Fund Institute; 1994. 34. Siminoff LA, Burant C, Youngner SJ. Death and organ pro - Research Report S. curement: public beliefs and attitudes. Soc Sci Med. 41 . Barber K, Falvey S, Hamilton, C, Collett D, Rudge C. Potentia l 2004;59(11):2325-2334. for organ donation in the United Kingdom: audit of intensive 35. Arnold JD, Zimmerman TF, Martin DC. Public attitudes and care records. BMJ . 2006. http://www.bmj.com/cgi/content the diagnosis of death. JAMA . 1968;206(9):1949-1954. /abstract/332/7550/1124. Accessed February 24, 2008. 36. Hessing DJ, Elffers DF. Attitudes toward death, fear of being 42. Reber AS. The Penguin Dictionary of Psychology . London, declared dead too soon and donation of organs after death. United Kingdom: Penguin Books; 1985. Omega J Death Dying . 1986;17(2):115-124. 43. Long T, Sque M. Conflict rationalization: how family mem - 37. Dubois JM, Schmidt T. Does the public support organ dona - bers cope with a diagnosis of brain stem death. Soc Sci Med. tion using higher brain-death criteria. J Clin Ethics. In press. 2003;14(1-2):26-36. 44. Bell MDD. Emergency medicine, organ donation and the 38. Prottas JM, Batten HL. Heath professionals and hospital Human Tissue Act. J Emerg Med. 2006;23:824-827. administrators in organ procurement: attitudes, reservations, 45 . Kootstra G, Daemen HC, Oomen AP. Categories of non-heart- and their resolutions. Am J Public Health. 1988;78(6):642-645. beating donors. Transplant Proc. 1995;27(5):2893-2894. 39. Wakeford RE, Stepney R. Obstacles to organ donation. Br J 46. Matesanz R. Cadaveric organ donation: comparison of legis - Surg. 1989;76(5):435-439. lation in various countries of Europe. Nephrol Dial Trans - 40. New B, Solomon M, Dingwall R, McHale J. A Question of plant. 1998;13(7):1632-1635.

Progress in Transplantation, Vol 18, No. 2, June 2008 125 CE Test Test ID 4000-J53: What does a diagnosis of brain death mean to family members approached about organ donation? Learning objectives: 1. Identify specific issues pertaining to the literature review on brain death 2. Discuss the factors why families chose not to donate 3. Understand how brain death may be perceived by family members approached about organ donation

1. Which one of the following is a concern for members of the public 6. Which one of the following best describes the reason for a nondonation asked about organ donation? in the scenario reported by Sque et al? a. Their families will be left will all their hospital debt a. Nondonation was linked to participants not believing their loved one would b. Their wishes will not be honored upon their death want to donate his or her organs. c. They may be diagnosed dead too soon b. Nondonation was linked to participants not wanting to make any final decisions d. They may be diagnosed dead too late based solely on their experience and knowledge of organ donation. c. Nondonation was linked to participants’ reluctance to relinquish guardianship 2. Which one of the following best describes the category of qualitative of the body due to the patient’s beliefs and the healthcare providers’ beliefs. studies? d. The participants were reluctant to relinquish their guardianship and ability to a. Exploring psychological factors that may underpin decision making in protect the body and concerned about the donation operation. relation to organ donation b. Exploring physiological factors that may underpin decision making in 7. Which one of the following identifies the stages of the organ donation relation to organ donation process? c. Exploring the level of public willingness to donate organs a. Postconfrontation stage, ancillary stage, preconfrontation stage d. Exploring the level of obstacles to organ donation b. Confrontation stage, anticipation stage, and postconfrontation stage c. Dying process stage, illusional stage, and confrontation stage 3. In a study by Franz et al, what percentage of respondents identified d. Confrontation stage, awareness of dying stage, and acceptance stage the diagnosis of brain death as their relative being brain dead and not in a coma? 8. Which one of the following best describes cognitive dissonance? a. 80% of donor families and 82% of nondonor families a. The emotional state set up when 2 simultaneously held attitudes or cognition s b. 95% of donor families and 97% of nondonor families are inconsistent or when there is a conflict between beliefs and overt behavior c. 90% of donor families and 92% of nondonor families b. The emotional state set up when 3 or more simultaneously held attitudes or d. 28% of donor families and 45% of nondonor families cognitions are inconsistent or when there is a conflict between beliefs and values c. The psychological state where 2 or more beliefs and values are in constant 4. Which one of the following best identifies the consistent findings d. The emotional state that maintains negative thinking and negative emotions of the 3 studies conducted by Franz et al, Siminoff et al, and the Gallup Organization? 9. Which one of the following is the grounded theory developed by a. The person is dead when the diagnosis of brain death occurs. Sque et al? b. The person can recover from a persistent vegetative state. a. Relevant Expressive Loss theory c. The person is dead only when the heart has stopped beating. b. Grounded Loss theory d. The person is dead only when life support is discontinued. c. Dissonant Loss theory d. Conflict Resolution theory 5. According to Siminoff et al, how should healthcare providers approach families about organ donation 10. Sanner interprets the illusion of lingering life as which of the following? a. Provide families with guidebooks and tell them to find answers to their a. An effect of the common death anxiety defense called the feeling of immortality questions in the book. b. An effect of the common death experience as what is done to the dead person b. Set up family counseling sessions that provide all the answers about is felt as if done to a living individual. organ donation. c. The illusion of the continuation of life after the diagnosis of brain death c. Expect families to approach healthcare providers with all their questions. d. The mental illusion of breathing by the deceased after death occur d. Explore what the family understands about the term brain death and what implication it has for the family.

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