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

BACKGROUND: Background: Organ donation (OD) following circulatory determination of death (DCDD) is an increasing source of transplant organs but little is known about community opinions on treatment withdrawal, determination of death and acceptance of OD in DCDD. AIMS: To determine attitudes on death determination in DCDD, the importance of patient choice in treatment withdrawal and OD agreement, and the importance of the 'Dead Donor Rule'. METHODS: Scenario-based online survey of 1017 members of the Australian general public. Mean levels of agreement across respondent's responses to statements were compared by repeated measures ANOVA. RESULTS: 54% (548) of respondents agreed that a DCDD scenario patient could be declared dead 2 minutes after circulatory standstill, however over 80% nonetheless agreed OD would be appropriate, including 77% (136/176) of those disagreeing with a 2-minute death declaration. 48% (484) supported OD even if it caused the patient's death. 75% (766) would accept relatively benign ante-mortem treatments administered to improve transplant outcomes. Over 70% supported a high quadriplegic patient's request to be allowed to die, with 61% (622) agreeing that he should be allowed to donate his organs under anaesthesia, but 60% (610) also agreed that he should first be declared dead. CONCLUSIONS: We found high levels of support for treatment withdrawal in severe brain injury and when requested by a quadriplegic patient. While there was variable agreement with the timing of death determination and with OD under anaesthesia, support for OD was high in both scenarios. For many people death determination prior to OD may not be of paramount importance.

A scoping review of the perceptions of death in the context of organ donation and transplantation.

BACKGROUND: Socio-cultural perceptions surrounding death have profoundly changed since the 1950s with development of modern intensive care and progress in solid organ transplantation. Despite broad support for organ transplantation, many fundamental concepts and practices including brain death, organ donation after circulatory death, and some antemortem interventions to prepare for transplantation continue to be challenged. Attitudes toward the ethical issues surrounding death and organ donation may influence support for and participation in organ donation but differences between and among diverse populations have not been studied. OBJECTIVES: In order to clarify attitudes toward brain death, organ donation after circulatory death and antemortem interventions in the context of organ donation, we conducted a scoping review of international English-language quantitative surveys in various populations. STUDY APPRAISAL: A search of literature up to October 2020 was performed, using multiple databases. After screening, 45 studies were found to meet pre-specified inclusion criteria. RESULTS: 32 studies examined attitudes to brain death, predominantly in healthcare professionals. In most, around 75% of respondents accepted brain death as equivalent to death of the person. Less common perspectives included equating death with irreversible coma and willingness to undertake organ donation even if it caused death. 14 studies examined attitudes to organ donation following circulatory death. Around half of respondents in most studies accepted that death could be confidently diagnosed after only 5 min of cardiorespiratory arrest. The predominant reason was lack of confidence in doctors or diagnostic procedures. Only 6 studies examined attitudes towards antemortem interventions in prospective organ donors. Most respondents supported minimally invasive procedures and only where specific consent was obtained. CONCLUSIONS: Our review suggests a considerable proportion of people, including healthcare professionals, have doubts about the medical and ethical validity of modern determinations of death. The prognosis of brain injury was a more common concern in the context of organ donation decision-making than certainty of death.

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

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.

An Australian community jury to consider case-finding for dementia: Differences between informed community preferences and general practice guidelines.

BACKGROUND: Case-finding for dementia is practised by general practitioners (GPs) in Australia but without an awareness of community preferences. We explored the values and preferences of informed community members around case-finding for dementia in Australian general practice. DESIGN, SETTING AND PARTICIPANTS: A before and after, mixed-methods study in Gold Coast, Australia, with ten community members aged 50-70. INTERVENTION: A 2-day citizen/community jury. Participants were informed by experts about dementia, the potential harms and benefits of case-finding, and ethical considerations. PRIMARY AND SECONDARY OUTCOMES: We asked participants, "Should the health system encourage GPs to practice 'case-finding' of dementia in people older than 50?" Case-finding was defined as a GP initiating testing for dementia when the patient is unaware of symptoms. We also assessed changes in participant comprehension/knowledge, attitudes towards dementia and participants' own intentions to undergo case-finding for dementia if it were suggested. RESULTS: Participants voted unanimously against case-finding for dementia, citing a lack of effective treatments, potential for harm to patients and potential financial incentives. However, they recognized that case-finding was currently practised by Australian GPs and recommended specific changes to the guidelines. Participants increased their comprehension/knowledge of dementia, their attitude towards case-finding became less positive, and their intentions to be tested themselves decreased. CONCLUSION: Once informed, community jury participants did not agree case-finding for dementia should be conducted by GPs. Yet their personal intentions to accept case-finding varied. If case-finding for dementia is recommended in the guidelines, then shared decision making is essential.

Non-medical prescription stimulant use to improve academic performance among Australian university students: prevalence and correlates of use.

BACKGROUND: Some university students consume pharmaceutical stimulants without a medical prescription with the goal of improving their academic performance. The prevalence of this practice has been well documented in the US, but less so in other countries. The potential harms of using prescription stimulants require a better understanding of the prevalence of this practice within Australian universities. METHODS: An internet survey of 1136 Australian students was conducted in 2015 in three large Australian universities. Students were asked about their personal use of prescription stimulants, attitudes and experiences with prescription stimulants. They were also asked about their use of caffeine, energy drinks and illicit drugs to enhance their academic performance. RESULTS: Lifetime self-reported use of stimulant medication to improve academic performance was 6.5, and 4.4% in the past year. Students were far more likely to report using coffee and energy drinks (41.4 and 23.6% respectively, lifetime use) than prescription stimulants to help them study and complete university assessments. Non-medical use of prescription stimulants was strongly associated with a history of illicit drug use. CONCLUSION: The prevalence of nonmedical prescription stimulant use to improve academic performance is low among university students in Australia, especially when compared with their use of coffee and energy drinks.

A prospectus for ethical analysis of ageing individuals' responsibility to prevent cognitive decline.

As the world's population ages, governments and non-governmental organizations in developed countries are promoting healthy cognitive ageing to reduce the rate of age-related cognitive decline and sustain economic productivity in an ageing workforce. Recommendations from the Productivity Commission (Australia), Dementia Australia, Government Office for Science (UK), Presidential Commission for the Study of Bioethical Issues (USA), Institute of Medicine (USA), among others, are encouraging older adults to engage in mental, physical, and social activities. These lifestyle recommendations for healthy cognitive ageing are timely and well supported by scientific evidence but they make implicit normative judgments about the responsibility of ageing individuals to prevent cognitive decline. Ethical tensions arise when this individual responsibility collides with social and personal realities of ageing populations. First, we contextualize the priority given to healthy cognitive ageing within the current brain-based medical and social discourses. Second, we explore the individual responsibility by examining the economic considerations, medical evidence and individual interests that relate to the priority given to healthy cognitive ageing. Third, we identify three key ethical challenges for policymakers seeking to implement lifestyle recommendations as an effective population-level approach to healthy cognitive ageing. The result is a prospectus for future in-depth analysis of ethical tensions that arise from current policy discussions of healthy cognitive ageing.

Contextualized Autonomy and Liberalism: Broadening the Lenses on Complementary and Alternative Medicines in Preclinical Alzheimer's Disease.

Given advances in Alzheimer's disease (AD) research, some experts have proposed a state of "preclinical" AD to describe asymptomatic individuals displaying certain biomarkers. The diagnostic accuracy of these biomarkers remains debated; however, given economic pressures, this "diagnosis" may eventually reach consumers. Since evidence-based prevention and treatment options remain only modestly effective, patients may turn to complementary and alternative medicine (CAM). We explore ethical challenges associated with CAM use in preclinical AD. We first consider these issues through the liberal lens, which emphasizes informed choice while occasionally disregarding the complexity of decision making, at least as currently applied to CAM policies. We then broaden the liberal lens with a socio-contextual lens, which describes the impact of social context on choice. Finally, we describe an alternate lens (contextualized liberalism) and its practical health and policy implications while 1) building on the liberal commitment to autonomy and 2) recognizing contextual determinants of choice.

The Hidden Ethics Curriculum in Two Canadian Psychiatry Residency Programs: A Qualitative Study.

OBJECTIVE: The authors describe the hidden ethics curriculum in two postgraduate psychiatry programs. METHODS: Researchers investigated the formal, informal, and hidden ethics curricula at two demographically different postgraduate psychiatry programs in Canada. Using a case study design, they compared three sources: individual interviews with residents and with faculty and a semi-structured review of program documents. They identified the formal, informal, and hidden curricula at each program for six ethics topics and grouped the topics under two thematic areas. They tested the applicability of the themes against the specific examples under each topic. Results pertaining to one of the themes and its three topics are reported here. RESULTS: Divergences occurred between the curricula for each topic. The nature of these divergences differed according to local program characteristics. Yet, in both programs, choices for action in ethically challenging situations were mediated by a minimum standard of ethics that led individuals to avoid trouble even if this meant their behavior fell short of the accepted ideal. CONCLUSIONS: Effective ethics education in postgraduate psychiatry training will require addressing the hidden curriculum. In addition to profession-wide efforts to articulate high-level values, program-specific action on locally relevant issues constitutes a necessary mechanism for handling the impact of the hidden curriculum.

Generating genius: how an Alzheimer's drug became considered a 'cognitive enhancer' for healthy individuals.

BACKGROUND: Donepezil, an acetylcholinesterase inhibitor used in the treatment of Alzheimer's disease, has been widely cited in media and bioethics literature on cognitive enhancement (CE) as having the potential to improve the cognitive ability of healthy individuals. In both literatures, this claim has been repeatedly supported by the results of a small study published by Yesavage et al. in 2002 on non-demented pilots (30-70 years old). The factors contributing to this specific interpretation of this study's results are unclear. METHODS: We examined print media and interdisciplinary bioethics coverage of this small study, aiming to provide insight into how evidence from research may be shaped within different discourses, potentially influencing important policy, ethics, and clinical decisions. Systematic qualitative content analysis was used to examine how this study was reported in 27 media and 22 bioethics articles. Articles were analyzed for content related to: (1) headlines and titles; (2) colloquialisms; and, (3) accuracy of reporting of the characteristics and results of the study. RESULTS: In media and bioethics articles referencing this small study, strong claims were made about donepezil as a CE drug. The majority of headlines, titles, and colloquialisms used enhancement language and the majority of these suggest that donepezil could be used to enhance intellectual ability. Further, both literatures moved between reporting the results of the primary study and magnifying the perceived connection between these results and the CE debate that was alluded to in the primary study. Specific descriptions of the results overwhelmingly reported an improvement in performance on a flight simulator, while more general statements claimed donepezil enhanced cognitive performance. Further, a high level of reporting accuracy was found regarding study characteristics of the original study, but variable levels of accuracy surrounded the presentation of complex characteristics (i.e., methods) or contentious properties of the CE debate (i.e., initial health status of the study subjects). CONCLUSIONS: Hyped claims of CE effects cannot be completely accounted for by sheer inaccuracy in reporting. A complex interaction between the primary and secondary literature, and expectations and social pressures related to CE appears to drive enthusiastic reports.

The value and pitfalls of speculation about science and technology in bioethics: the case of cognitive enhancement.

In the debate on the ethics of the non-medical use of pharmaceuticals for cognitive performance enhancement in healthy individuals there is a clear division between those who view "cognitive enhancement" as ethically unproblematic and those who see such practices as fraught with ethical problems. Yet another, more subtle issue, relates to the relevance and quality of the contribution of scholarly bioethics to this debate. More specifically, how have various forms of speculation, anticipatory ethics, and methods to predict scientific trends and societal responses augmented or diminished this contribution? In this paper, we use the discussion of the ethics of cognitive enhancement to explore the positive and negative contribution of speculation in bioethics scholarship. First, we review and discuss how speculation has relied on different sets of assumptions regarding the non-medical use of stimulants, namely: (1) terminology and framing; (2) scientific aspects such as efficacy and safety; (3) estimates of prevalence and consequent normalization; and (4) the need for normative reflection and regulatory guidelines. Second, three methodological guideposts are proposed to alleviate some of the pitfalls of speculation: (1) acknowledge assumptions more explicitly and identify the value attributed to assumptions; (2) validate assumptions with interdisciplinary literature; and (3) adopt a broad perspective to promote more comprehensive reflection. We conclude that, through the examination of the controversy about cognitive enhancement, we can employ these methodological guideposts to enhance the value of contributions from bioethics and minimize potential epistemic and practical pitfalls in this case and perhaps in other areas of bioethical debate.

Stakeholder perspectives and reactions to "academic" cognitive enhancement: Unsuspected meaning of ambivalence and analogies.

The existence of diverging discourses in the media and academia on the use of prescription medications to improve cognition in healthy individuals, i.e. "cognitive enhancement" (CE) creates the need to better understand perspectives from stakeholders. This qualitative focus-group study examined perspectives from students, parents and healthcare providers on CE. Stakeholders expressed ambivalence regarding CE (i.e. reactions to, definitions of, risks, and benefits). They were reluctant to adopt analogies to performance-enhancing steroids and caffeine though these analogies were useful in discussing concepts common to the use of different performance-enhancing substances. Media coverage of CE was criticized for lack of scientific rigor, ethical clarity, and inadvertent promotion of CE. Ambivalence of stakeholders suggests fundamental discomfort with economic and social driving forces of CE. Forms of public dialogue that voice the unease and ambivalence of stakeholders should be pursued to avoid opting hastily for permissive or restrictive health policies for CE.

The pharmaceuticalisation of 'healthy' ageing: Testosterone enhancement for longevity.

The United Nations estimates that the world's population will reach 8.5 billion by 2030, and the populations of most countries are expected to grow older. This is case for many developed countries, including Australia, the United Kingdom, Canada, the United States of America, and member states of the European Union. Older cohorts will comprise a larger proportion of overall populations, driven in part by our increases in life expectancy. An ageing population poses challenges for governments; notably, older people tend to have multiple, chronic health conditions which can place a burden of health budgets. At the same time, we are witnessing a shift in how we respond to the health needs of our populations, with global drug policy acknowledging that some substances are contributing to increased morbidity and mortality (e.g. opioids) while others may have beneficial therapeutic effects (e.g. psylocibin, cannabis). There is general agreement that as men age their levels of testosterone decrease, and there is some evidence to suggest that there have been population-level declines in testosterone which are not associated with age. Anecdotally, testosterone is accessed by men seeking to self-medicate in the belief that they are experiencing low testosterone levels. There has also been a rise in anti-ageing clinics in the United States, providing access to testosterone replacement therapy (TRT). The non-medical use of testosterone can result in a number of adverse health events, including complications from the use of black market or underground products. Placing testosterone under a new prescribing regime may address some of these concerns, but is society ready for this change, and if so, what would this regime look like? This paper will explore the issue of how society responds to enhancement for longevity, or how we increasingly use pharmaceuticals to address and prevent illness, with a specific focus on testosterone and testosterone deficiency.

Problematic risk-taking involving emerging technologies: A stakeholder framework to minimize harms.

BACKGROUND AND AIMS: Despite the many benefits of technological advancements, problematic use of emerging technologies may lead to consumers experiencing harms. Substantial problems and behavioral addictions, such as gambling and gaming disorders, are recognized to be related to Internet-based technologies, including the myriad of new devices and platforms available. This review paper seeks to explore problematic risk-taking behaviors involving emerging technologies (e.g., online gambling and gaming, online sexual behaviors, and oversharing of personal information via social networking sites) that have the potential to lead to problematic outcomes for individuals. RESULTS AND DISCUSSION: Previous research has focused on policy frameworks for responding to specific issues (e.g., online gambling), but a broader framework is needed to address issues as they emerge, given lags in governments and regulators responding to dynamically evolving technological environments. In this paper, key terms and issues involved are identified and discussed. We propose an initial framework for the relative roles and responsibilities of key stakeholder groups involved in addressing these issues (e.g., industry operators, governments and regulators, community groups, researchers, treatment providers, and individual consumers/end users). CONCLUSION: Multidisciplinary collaboration can facilitate a comprehensive, unified response from all stakeholders that balances individual civil liberties with societal responsibilities and institutional duty of care.

Disagreements with implications: diverging discourses on the ethics of non-medical use of methylphenidate for performance enhancement.

BACKGROUND: There is substantial evidence that methylphenidate (MPH; Ritalin), is being used by healthy university students for non-medical motives such as the improvement of concentration, alertness, and academic performance. The scope and potential consequences of the non-medical use of MPH upon healthcare and society bring about many points of view. METHODS: To gain insight into key ethical and social issues on the non-medical use of MPH, we examined discourses in the print media, bioethics literature, and public health literature. RESULTS: Our study identified three diverging paradigms with varying perspectives on the nature of performance enhancement. The beneficial effects of MPH on normal cognition were generally portrayed enthusiastically in the print media and bioethics discourses but supported by scant information on associated risks. Overall, we found a variety of perspectives regarding ethical, legal and social issues related to the non-medical use of MPH for performance enhancement and its impact upon social practices and institutions. The exception to this was public health discourse which took a strong stance against the non-medical use of MPH typically viewed as a form of prescription abuse or misuse. Wide-ranging recommendations for prevention of further non-medical use of MPH included legislation and increased public education. CONCLUSION: Some positive portrayals of the non-medical use of MPH for performance enhancement in the print media and bioethics discourses could entice further uses. Medicine and society need to prepare for more prevalent non-medical uses of neuropharmaceuticals by fostering better informed public debates.

Seeking legitimacy for broad understandings of substance use.

This commentary invites discussion about implicit and explicit factors that impede research about substance use from a nuanced perspective that recognises potential benefits and advantages. It is argued that explicit efforts to engage in scholarship beyond those informed by theoretical and philosophical assumptions that substance use is inherently risky and problematic can enhance genuine inquisition about substance use and transform which discourses and interpretations are legitimised. Prioritisation of scholarly funding and publication has largely been predicated on the notion that illicit substances pose an inherent risk for individual and social harm. This has implicitly and explicitly influenced what type of research has been conducted and how substance use is constructed. Researchers who engage in scholarship that suspends assumptions of risk and problems associated with substance use may become subject to judgement about their credibility, ethics, and expertise. Moving forward, we suggest that conscientiously attending to broad, nuanced experiences associated with substance use will contribute to a stronger evidence base. Equal opportunity should be given to examine the complexity of lived experiences. It may also be timely to consider what brings value to scholarly pursuit, recognising that health is but one valued social outcome. Perhaps other outcomes, such as human rights, compassion, and justice are equally commendable. To advance substance use scholarship, it is essential that decision-makers (e.g., funding bodies, editors) embrace research that does not conform to assumptions of risk or inherent problems as exclusively legitimate, advocate for scholarship that resists conforming to dominant discourses, and create spaces for critical perspectives and interpretations.