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 Kingdom) or brain death (the term used in the United States) means to the family members of potential organ donors is an important issue to explore as biomedicine moves to expand the range of end-of-life technologies that, potentially, blur the demarcation between life and death. OBJECTIVE: To provide some insights into how a diagnosis of brain stem death or brain death may be perceived by family members approached about organ donation. METHODS: A review of the literature regarding organ donation was carried out. RESULTS: Although most publications do not focus specifically on the concept of brain death, those that do so made a valuable contribution, offering potential theoretical frameworks to aid our understanding of what the diagnosis of death by brain-based criteria means to family members of potential organ donors. The diagnosis of brain death is intricately linked to the issue of organ donation and may influence family members' decision making. Also, the perception that death has occurred differs from one person to another. CONCLUSIONS: A sustained increase in the number of organs available for transplantation 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.

Managing a good death in critical care: can health policy help?

AIM: This paper discusses end-of-life care (EoLC) in critical care through exploration of what is known from the international literature and what is currently presented within UK policy. BACKGROUND AND CONTEXT: EoLC is an important international critical care issue, and currently provides a key focus for health care policy in the UK. While society holds that critical care is delivered in a highly technical area with a strong focus on cure and recovery, mortality rates in this speciality remain at approximately 20%. When patient recovery is not an outcome, discussions with patient, family and extended care teams turn towards futility of treatment and end-of-life management. However, there are specific barriers to overcome in EoLC for the critically ill. CONCLUSION: A key issue for EoLC in critical care is a lack of robust systems to prospectively identify individuals who are most at risk of dying. A further challenge is divergent perspectives within and across clinical teams on treatment withdrawal and limitation practices. To streamline patient management and underpin a hospice approach to care, EoLC policies are currently being used within the UK. While this provides a national framework to address some key critical care clinical issues in the UK, there is a need for further refinement of the tool to reflect the reality of EoLC for the critically ill. It is important that international best practice exemplars are examined and clinicians actively engage and contribute to ensure that any local EoLC frameworks are fit for purpose.

Conflict rationalisation: how family members cope with a diagnosis of brain stem death.

Brain death, whether it be brain stem death in the UK, or whole-brain death in the USA, is a prerequisite for heart-beating organ donation. Understanding how brain death is perceived by family members approached about organ donation, its significance to them, and if it is accepted by them, are, therefore, important issues to explore as biomedicine expands the range of end of life technologies that blur the demarcation between life and death. To explore the concept of brain stem death and its meaning to family members the following research questions were posed: (i) what does the diagnosis of death based on brain stem testing mean to bereaved family members who have been approached and asked to consider a donation from a deceased relative, and (ii) how do family members understand the concept of brain stem death? To address these research questions, a secondary analysis of 28 interviews sorted from two primary datasets was carried out. The primary datasets contained longitudinal and cross-sectional interviews carried out in the UK with family members who had been approached about organ donation and agreed to donate their relatives' organs. Data analysis was guided by constructionist grounded theory method and resulted in the theory of Paradoxical Death. In this process, family members and health professionals engage in a series of practical and psychological activities aimed at rationalising real or potential emotional and cognitive conflict resulting from a brain-based diagnosis of death, whilst faced with the physical image of a functioning body. Rationalising emotional and cognitive conflict is how family members and health professionals appeared to process this paradoxical death, a death that is contrary to conventional opinion.

The UK postmortem organ retention crisis: a qualitative study of its impact on parents.

OBJECTIVE: To explore the impact of postmortem organ retention on parents who made enquiries about their babies and children when the retention of hearts and other organs removed at postmortem and stored without explicit knowledge or consent of the next-of-kin came to public attention in the UK during 1999-2004. DESIGN: Qualitative study conducted 2003-2004. Data were collected via semi-structured, qualitative interviews and focus groups. PARTICIPANTS: 39 parents who had been affected by organ retention. SETTING: Participants were recruited via three parental peer support groups and two NHS Hospital Trusts. RESULTS: Transcripts of the interviews and focus groups were analysed using a thematic approach that sought patterns within the data and highlighted important similarities and differences between participants' accounts. Participants reported the distressing impact organ retention had on their lives; their need for information about the retention of their babies' or children's organs; and the difficulties in their decision making about disposal of retained body parts and tissue blocks and slides. Analysis indicated that organ retention had evoked unresolved bereavement issues and a renewal of grief as well as an opportunity for some parents to resolve ongoing bereavement concerns. CONCLUSIONS: Parents in this study wanted NHS teams to appreciate the difficulties organ retention had caused them, deal with their enquiries proactively with openness and honesty, and facilitate an environment where they felt supported and could gain the answers to their questions and concerns that were provoked by postmortem organ retention. Such issues may also have implications for the care of other parents and relatives of deceased children.

Why relatives do not donate organs for transplants: 'sacrifice' or 'gift of life'?

AIM: This paper is a report of a study to explore the reasons family members declined organ donation from a deceased relative. BACKGROUND: In the United Kingdom family members' consent is usually sought before organ donation from their deceased relative can proceed. Knowledge of the concerns that may influence families' decision-making could be helpful to nurses supporting bereaved family members. METHOD: A convenience sample of 26 family members, who declined donation of their deceased relatives' (n = 23) organs, were recruited via three media campaigns in large conurbations and from four intensive care units in the United Kingdom. Data were collected in 2005 using interviews. FINDINGS: Donation decisions depended on a number of converging factors in a particular situation and not necessarily on the views of relatives about donation, or the reported wishes of the deceased in life, except if the person had stated that they did not wish to be an organ donor. Therefore, reported pro-donation views held by the family, or the deceased in life, did not guarantee donation. Protecting the dead body, which related to keeping the body whole and intact was the most frequently-recurring theme, being reported in 15 interviews. CONCLUSION: Families' wishes to protect the dead body may stimulate tension between the notions of 'gift of life' as supported by transplant policy and 'sacrifice' of the body, which must be made if organ donation is to proceed. This could account for the decision of participants to decline donation even if their deceased relative previously held positive views about organ donation.

Information sharing: its impact on donor and nondonor families' experiences in the hospital.

OBJECTIVE: To illustrate the methods used to convey complicated information regarding the critical injury, and death diagnosed by means of brainstem testing, to the next of kin of potential organ donors. DESIGN: 3-year, prospective, longitudinal study. PARTICIPANTS AND SETTING: Forty-three family members who chose to donate their deceased relatives' organs were recruited via 4 transplant coordinating centers, and 3 family members who chose not to donate were recruited via 1 intensive care unit. METHOD: Face-to-face qualitative interviews were carried out with 46 family members of 43 individuals who died between June and December 2000. Family members who agreed to donation were interviewed during and after their next of kin's admission to hospital and 3 to 5 months, 13 to 15 months, and 18 to 26 months after bereavement. Three participants who chose not to donate were interviewed on 1 occasion only. Interviews were audio-recorded, and the transcribed reports were analyzed using a comparative, thematic approach focusing on the detection of similarities and differences between cases. RESULTS: Participants who were offered verbal information supported by complementary methods of communication had (1) a greater understanding of the critical injury sustained by their next of kin, and (2) fewer questions over time regarding brainstem testing. CONCLUSION: Better methods of communicating complicated information are needed, as the sheer load of information shared makes demands of next of kin at a time when they are cognitively and emotionally poorly equipped to respond.

A meta-analytic review of the CYP2A6 genotype and smoking behavior.

Individuals who carry variant alleles of the CYP2A6 gene are poor metabolizers of nicotine and are believed to be more sensitive to nicotine's aversive effects than those with normal alleles. This sensitivity is hypothesized to exert a protective effect against smoking initiation and lead to lower cigarette consumption among smokers with variant alleles. Although early studies found an association between variant CYP2A6 alleles and smoking behavior, more recent studies have not. A meta-analysis was conducted to help resolve these conflicting results. A literature search produced 11 studies providing information on CYP2A6 genotyping in smokers or nonsmoking control subjects. Participants were classified as smokers (ever-smokers or current smokers) or nonsmokers (former or never-smokers), and as carrying normal CYP2A6 genes or one or more variant alleles. Information regarding cigarette consumption also was included. Effect sizes were calculated from each study and then aggregated into an overall effect size. This analysis failed to find any empirical evidence of a relationship between variant CYP2A6 alleles and smoking status (n=4091) or cigarette consumption (n=1537). Although these results suggest the CYP2A6 gene is not associated with smoking behavior, the use of broad smoking status classifications (e.g., ever- vs. never-smoking), which fail to account for the complex nature of gene expression (e.g., gene-gene interactions), may have obscured the relatively modest genetic influences that might have been present. What role, if any, the CYP2A6 gene plays in smoking behavior will be understood only if future research addresses these methodological concerns.

Attitudes of potential candidates for heart and heart-lung transplantation to xenotransplantation.

CONTEXT AND OBJECTIVES: Whether the fact that a transplanted organ is non-human would affect acceptance levels among potential recipients of heart and heart-lung xenografts has not been determined. Studies in renal patients have produced contradictory results. Furthermore, no previous studies have examined the attitudes toward xenotransplantation among the chief caregivers of potential transplant recipients. PARTICIPANTS AND MEASURES: Fifty-nine patients and 54 caregivers responded to a questionnaire that requested their views on xenotransplantation, the source and level of their knowledge about xenotransplantation, and the perceived costs and benefits of this intervention. Patients' and caregivers' attitudes to animal experimentation and killing animals for human benefit were also assessed by using a specifically designed attitude questionnaire. RESULTS: Fifty-six percent of patients and 48% of caregivers were unsure about xenotransplantation. Seventy-nine percent of patients and 85% of caregivers indicated that they had received little or no information about xenotransplantation, and what information they had received was from nonmedical sources. Availability of organs was the main perceived benefit (36% of patients and 40% of caregivers) and ethical and moral issues were the main perceived cost (20% of patients and 25% of caregivers). Overall patients and caregivers were in agreement with animal experimentation and killing animals for human benefit. CONCLUSIONS: Potential heart and heart-lung recipients and their caregivers have limited information about xenotransplantation and are currently unsure about the acceptability of this procedure. Although this uncertainty may be due to their lack of information about this intervention, it may also reflect concerns about the morality of breeding animals solely to provide organs for transplantation.