Death, dying and donation: community perceptions of brain death and their relationship to decisions regarding withdrawal of vital organ support and organ donation

Abstract

Despite brain death (BD) being established as a definition of death for over 50 years, the concept remains controversial. Little is known about public perception of death determination in decision-making about withdrawal of organ support and organ donation (OD), and the importance of the 'Dead Donor Rule' (DDR). We examined perceptions about death in a BD patient and their relationship to decisions about withdrawal of vital organ support, OD and the DDR, using an online survey of 1017 Australian adults. A BD patient scenario was presented, followed by a series of questions. Statistically significant differences in responses were determined using repeated measures analyses of variance and t tests. Seven hundred and fourteen respondents (70.2%) agreed that a hypothetical BD patient was dead. Those disagreeing most commonly cited the presence of heartbeat and breathing. Seven hundred and seventy (75.7%) favoured removal of 'life support', including 136 (13.3%) who had not agreed the patient was dead. Support for OD was high, but most favoured organ removal only after heartbeat and breathing had ceased. Where OD was in keeping with the patient's known wishes, 464 (45.6%) agreed that organs could be removed even if this caused death. Forty-one (20%) of those who had indicated they considered the patient was not dead agreed to organ removal even if it caused death. Australian public views on BD, withdrawal of 'life support' and OD are complex. Emphasis on prognosis and the impact of significant brain injury may be more appropriate in these situations, rather than focussing on death determination and upholding the DDR.

Death determination, organ donation and the importance of the Dead Donor Rule following withdrawal of life‐sustaining treatment: a survey of community opinions

“…Nonetheless, support for OD in this scenario was very high and included a substantial number of respondents who had not supported the idea that life support should be withdrawn. This level of OD support was somewhat greater than we found in our previously published study involving hypothetical brain dead patient scenario, 13 suggesting that the respondents were at least as comfortable with OD in the DCDD setting as in brain death. Indeed, approximately 80% of respondents who did not agree that death could be declared after 2 min of cardiorespiratory standstill or were unsure, nonetheless agreed with OD if the patient was a close relative or themselves, demonstrating strong support for OD despite doubts about whether death had occurred.…”

“…‘for quality control purposes please answer disagree’), and removing cases where responses were either too fast or slow. The full survey instrument and a description of development and validation along with full details of the participants have been published previously 13 and are available in Supporting Information Appendix S1.…”

“…Given the increasing utilisation of DCDD protocols, the ongoing modification of such protocols (including expansion of ante‐mortem interventions to improve organ and recipient outcomes) and the persistent ethical questions surrounding DCDD, we designed a study to investigate community attitudes to treatment withdrawal, death determination and OD, and also the importance of patient choice and the DDR. We have previously published the results pertaining to a brain death scenario from this survey 13 …”

Life beyond life: Perceptions of post‐mortem organ donation and consent to donate—A focus group study in Italy

“…Fear of death and connected doubts can negatively influence consent to donate, or orient the individual to the decision to oppose donation, for example doubting that a deceased person is actually deceased, hoping that it might awaken 1 day, lacking information and/or having misleading ideas regarding brain death, a lack of trust in the health care system (‘doctors can be wrong’) and magical thinking (e.g., ‘miracles can always happen!’) (Anker & Feeley, 2010; Moloney & Walker, 2002; Reynolds‐Tylus et al, 2019; Skowronski et al, 2020). Lack of trust in the healthcare system has been reported as an important factor influencing the decision to donate (Feeley et al, 2014; Miller et al, 2020), fearing especially that health care professionals might declare someone deceased inappropriately or prematurely, in order to extract the organs (Lauri, 2009).…”

Death, brain death, organ donation and drugs

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The finding that approximately one in three of Skowronski's et al respondents would be uncertain as to the patient being truly dead at the 24 h mark, even in the presence of diagnostic certainty, is of significance when time is of the essence in procuring organs for transplantation. 1 A somewhat similar hypothetical case was discussed in the article published as 'Controversies in Health Care' in the Medical Journal of Australia that followed an Australasian Society of Clinical and Experimental Pharmacologists and Toxicologists multidisciplinary symposium on drugs and brain death. 2 Most centrally acting drugs will not be completely eliminated from plasma at 24 h and there are many analogue psychotropic agents that may not be detectable by routine laboratory testing.

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