Background The expressions of a “wish to hasten death” or “wish to die” raise ethical concerns and challenges. These expressions are related to ethical principles intertwined within the field of medical ethics, particularly in end-of-life care. Although some reviews were conducted about this topic, none of them provides an in-depth analysis of the meanings behind the “wish to hasten death/die” based specifically on the ethical principles of autonomy, dignity, and vulnerability. The aim of this review is to understand if and (...) how the meanings behind the “wish to hasten death/die” relate to and are interpreted in light of ethical principles in palliative care. Methods We conducted a meta-ethnographic review according to the PRISMA guidelines and aligned with Noblit and Hare’s framework. Searches were performed in three databases, Web of Science, PubMed, CINAHL, with no time restrictions. Original qualitative studies exploring the meanings given by patients, family caregivers and healthcare professionals in any context of palliative and end-of-life care were included. A narrative synthesis was undertaken. PROSPERO registration CRD42023360330. Results Out of 893 retrieved articles, 26 were included in the analysis, accounting for the meanings of a total of 2,398 participants. Several factors and meanings associated with the “wish to hasten death” and/or “wish to die” were identified and are mainly of a psychosocial and spiritual nature. The ethical principles of autonomy and dignity were the ones mostly associated with the “wish to hasten death”. Ethical principles were essentially inferred from the content of included articles, although not explicitly stated as bioethical principles. Conclusions This meta-ethnographic review shows a reduced number of qualitative studies on the “wish to hasten death” and/or “wish to die” explicitly stating ethical principles. This suggests a lack of bioethical reflection and reasoning in the empirical end-of-life literature and a lack of embedded ethics in clinical practice. There is a need for healthcare professionals to address these topics compassionately and ethically, taking into account the unique perspectives of patients and family members. More qualitative studies on the meanings behind a wish to hasten death, their ethical contours, ethical reasoning, and implications for clinical practice are needed. (shrink)

One of the common domains in health care in which the concept of vulnerability is used is end-of-life care, including euthanasia and assisted suicide (EAS). Since different uses and implications of the notion have been recognised in the literature on EAS, this paper aims to analyse them and reflect on who is the most vulnerable in the context of EAS. A prior exploratory review of the literature has served as a starting point for the discussion. We concluded that vulnerability is (...) a complex, multi-perspective and multi-layered concept, which implies the vulnerability of different stakeholders involved in EAS practices and vulnerability in different aspects of being human (i.e., physical, mental, moral, social and spiritual). A comprehensive understanding of the notion of vulnerability, which balances as well as complements the concept of autonomy, seems to be an indispensable element of the discourse on EAS. (shrink)

Despite the role of public health interventions in controlling disease transmission and protecting the public during the COVID-19 emergency, the implementation of quarantine restrictions has raised serious ethical concerns, especially in relation to the well-being of vulnerable populations. Drawing on the lived experiences of rural Chinese migrants who are subject to pandemic control, the authors highlight their inadequate capacities to manage the risks associated with the pandemic and adjust to quarantine restrictions. Informed by an ethical discourse of vulnerability, we show (...) that underpinning this group’s deficient coping strategies is a range of detrimental social structures and institutions that have developed under the persistent rural–urban divide in China. These structural constraints and pathologies expose rural migrants to serious risks and uncertainties while depriving them of the means and resources necessary to protect their own interests in the process of complying with quarantine restrictions. Understanding the plight of rural Chinese migrants as a structural problem also has implications for the global response to the COVID-19 pandemic. We further suggest a need for state intervention to mitigate structural deficiencies and empower the vulnerable during the COVID-19 era. (shrink)

Background:In China, the conventional family-based ageing care model is under pressure from social transitions, raising the question of whether and to what extent families are still capable of dealing with the care of the aged.Objective:This article examines the vulnerability and inadequacy of families to bear responsibility for the care of the aged against a backdrop of socioeconomic transformation and diminishing institutional support in rural China.Research design:This article adopts an empirical ethical approach that integrates empirical investigation with ethical inquiry.Participants and research (...) context:The empirical component of this article focuses on the lived experiences of caring for a wife and mother with dementia in one rural Chinese family, collected from a 6-month fieldwork study conducted at one primary hospital.Ethical considerations:Approval was obtained from the university ethics committee.Findings:The empirical study highlights a conflicted family process of managing and negotiating care that indicates the inadequacies and limited ability of families to deal with aged care tasks. In addition, inadequate structures and institutional deficiencies exacerbate the vulnerability of rural families and their inability to offer adequate care.Conclusion:Acknowledging the vulnerability of families as ageing care providers, this article calls for a socially supported family care model for rural older people in China and also proposes policy recommendations. (shrink)

This paper attempts to philosophically articulate empirical evidence on the positive effects of illness within the wider context of a discussion of the positive aspects of vulnerability. The conventional understanding holds that to be vulnerable is to be open to harms and wrongs; it is to be fragile, defenseless, and of compromised autonomy. In this paper, we challenge the assumption that vulnerability consists of nothing but powerlessness and dependence on others. This paper attempts to: (1) outline the theoretical conceptualisation of (...) the positive aspects of coping with illness, while simultaneously showing how these findings provide empirical support for some classical philosophical ideas; (2) influence a change in the manners in which the ill are usually perceived (as weak, dependent, robbed of a good life) and (3) point to the importance of modernising the prevalent biomedical conception of illness with the subjective dimension of health. Biomedical understanding of illness focuses on the vulnerable experience of the sufferer, suggesting the importance of philosophical additions. (shrink)

The conduct of prior ethics review of human research projects helps to protect vulnerable groups or populations from potential negative impacts of research. Contemporary considerations in human research considers the concept of vulnerability in terms of access to research opportunities, impacts on the consenting process, selection bias, and the generalisability of results. Recent work questions the validity of using enumerated lists as a check box approach to protect research participants from exploitation. Through the use of broad categories to treat cohorts (...) of human research participants as homogenous classes and label some participants as vulnerable merely because they are members of a particular class, some ethics reviewers have used the National Statement on Ethical Conduct in Human Research to strip individuals of their “ethical equality”. Labelling people as vulnerable does not help researchers or human research ethics committee members develop an understanding of the complexities of applying the principles of respect and of justice in ethical decision-making. Conversely, defining specific cohorts of research participants as needing nuanced ethical consideration, due to their vulnerable nature, may imply that other population groups need not be considered vulnerable. We contend that this assumption is erroneous. This paper explores the way that human research ethics guidance documents treat vulnerability within the Australian context and draws on contemporary discussion to focus an alternative perspective based on the principles in the National Statement on Ethical Conduct in Human Research for researchers and human research ethics committee members to consider. (shrink)

Principlism is an ethical framework that has dominated bioethical discourse for the past 50 years. There are differing perspectives on its proper scope and limits. In this article, we consider to what extent principlism provides guidance for the abortion and euthanasia debates. We argue that whilst principlism may be considered a useful framework for structuring bioethical discourse, it does not in itself allow for the resolution of these neuralgic policy discussions. Scholars have attempted to use principlism to analyse the ethics (...) and legality of abortion and euthanasia; but such efforts are methodologically problematic. We close with a consideration of the proper scope of principlism in bioethics–a vision that is more modest than the manner in which principlism is often deployed in contemporary academic bioethics and medical education. (shrink)

Solidarity within bioethics is increasingly being recognized as an important means of improving health for all. Its contribution seems particularly relevant when there are injustices or inequalities in health and different individuals or groups are disadvantaged. But the current context of ecological collapse, characterized mainly by a loss of biodiversity and ecosystem decline, affects global health in a different way to other factors. This scenario creates new challenges, risks and problems that require new insights from a bioethical perspective. I, therefore, (...) propose an argument in favor of ecological solidarity. The aim of this article is to re-define this concept, outlining which causes should incite action through ecological solidarity and who should be the main recipient of it. To this end, I discuss what the background for practicing ecological solidarity might be: an intrinsically altruistic motivation to attempt to be a better person or a forced response to a political obligation. Finally, by way of example, I argue for rewilding as an effective, practical strategy through which ecological solidarity can be applied in the belief that building ecological solidarity supports a number of key interdependencies and ensures ethical care for the health of the planet. (shrink)

While the need to protect vulnerable research participants is universal, conceptual challenges with the notion of vulnerability may result in the under or over-protection of participants. Ethics review bodies making assumptions about who is vulnerable and in what circumstance can be viewed as paternalistic if they do not consider participant viewpoints. Our study focuses on participant vulnerability in Scholarship of Teaching and Learning (SoTL) research. We aim to illuminate students’ views on participant vulnerability to contribute to critical analysis of the (...) role and processes of ethics review. Additionally, we aim to highlight the importance of seeking the views of participant communities, especially in research environments beyond ethics review’s medical origins. Thirty-four students from a health-related faculty at a university in Aotearoa New Zealand, participated in five focus groups. Participants discussed factors affecting their potential participation in research drawing upon a series of vignettes based on examples of published SoTL projects. Themes, generated using reflexive thematic analysis, built a participant-informed picture of vulnerability. Findings indicate that students do not generally consider themselves vulnerable and instead consider participation in SoTL research through an agentic lens. Students expect that participation will be voluntary, not negatively impact their grades, and not single them out so that others could judge them. Our study also highlights the value students place on relationships with one another and teaching staff and the implications these have for SoTL research participation and future professional practice. This research challenges research ethics committees to think further about vulnerability in the context of SoTL whilst highlighting the importance of providing opportunities for research participants more broadly to explore and vocalize their views as members of participant communities. (shrink)

BackgroundVulnerability is a key concept in traditional and contemporary bioethics. In the philosophical literature, vulnerability is understood not only to be an ontological condition of humanity, but also to be a consequence of contingent factors. Within bioethics debates, vulnerable populations are defined in relation to compromised capacity to consent, increased susceptibility to harm, and/or exploitation. Although vulnerability has historically been associated with older adults, to date, no comprehensive or systematic work exists on the meaning of their vulnerability. To fill this (...) gap, we analysed the literature on aged care for the meaning, foundations, and uses of vulnerability as an ethical concept.MethodsUsing PRISMA guidelines, we conducted a systematic review of argument-based ethics literature in four major databases: PubMed, Embase®, Web of Science™, and Philosopher’s Index. These covered biomedical, philosophy, bioethical, and anthropological literature. Titles, abstracts, and full texts of identified papers were screened for relevance. The snowball technique and citation tracking were used to identify relevant publications. Data analysis and synthesis followed the preparatory steps of the coding process detailed in the QUAGOL methodology.ResultsThirty-eight publications met our criteria and were included. Publication dates ranged from 1984 to 2020, with 17 publications appearing between 2015 and 2020. Publications originated from all five major continents, as indicated by the affiliation of the first author. Our analyses revealed that the concept of vulnerability could be distinguished in terms of basic human and situational vulnerability. Six dimensions of older adults’ vulnerability were identified: physical; psychological; relational/interpersonal; moral; sociocultural, political, and economic; and existential/spiritual. This analysis suggested three ways to relate to older adults’ vulnerability: understanding older adults’ vulnerability, taking care of vulnerable older adults, and intervening through socio-political-economic measures.ConclusionsThe way in which vulnerability was conceptualised in the included publications overlaps with distinctions used within contemporary bioethics literature. Dimensions of aged care vulnerability map onto defining features of humans, giving weight to the claim that vulnerability represents an inherent characteristic of humans. Vulnerability is mostly a value-laden concept, endowed with positive and negative connotations. Most publications focused on and promoted aged care, strengthening the idea that care is a defining practice of being human. (shrink)

The covid-19 pandemic has revealed a partially forgotten vulnerability. This very hostile period has made us more aware of the finitude of our life as well as the dangers to which we are exposed as the biological organisms that we are. Faced with such a panorama, transhumanism has taken advantage of this situation to claim, more forcefully than ever, the benefits that the application of technologies on human beings could have. Yet, at the same time, opponents of this movement have (...) pointed out, with equal intensity, how the pandemic has wakened many of its promises. We show how both the former and the latter continue to hold radically different positions regarding how to address vulnerability. However, both have seen the pandemic as an opportunity to highlight what should be the right direction for the future of our species. This event, which is not rooted in the field of science-fiction, could be decisive in rethinking the great challenges that await us. (shrink)

Vulnerability is a broad concept widely addressed in recent scholarly literature. Lesbian, gay, bisexual, and transgender people are among the vulnerable populations with significant disadvantages related to health and the social determinants of health. Medical ethics discourse tackles vulnerability from philosophical and political perspectives. LGBT people experience several disadvantages from both perspectives. This article aims to justify the right to health for LGBT people and their particular claims regarding healthcare because they belong to a vulnerable group. Rawls’ theory of justice (...) and Norman Daniels’ normal functioning approach will be discussed in this context. Despite the fact that the right to health can be justified by Daniels’ normal functioning approach, there is still a theoretical gap in justifying the right to health for particular vulnerable populations such as LGBT peopleand discussing society’s duty to compensate for these disadvantages. In search of solid theoretical grounds for the justification of the right to health for LGBT people, the present author takes the opportunity to utilize Daniels’ flexible definition of normal functioning to show that normal functioning not only varies by age but also by different states of human existence, including sexual orientation and gender identity, and to propose replacing the life span approach with normal states of human existence. (shrink)

The study of the neuroscience and genomics of mental illness are increasingly intertwined. This is mostly due to the translation of medical technologies into psychiatry and to technological convergence. This article focuses on psychosis. I argue that the convergence of neuroscience and genomics in the context of psychosis is morally problematic, and that ethics scholarship should go beyond the identification of a number of ethical, legal, and social issues. My argument is composed of two strands. First, I argue that we (...) should respond to technological convergence by developing an integrated, patient-centred approach focused on the assessment of individual vulnerabilities. Responding to technological convergence requires that we integrate insights from several areas of ethics, translate bioethical principles into the mental health context, and proactively try to anticipate future ethical concerns. Second, I argue that a nuanced understanding of the concept of vulnerability might help us to accomplish this task. I borrow Florencia Luna’s notion of ‘layers of vulnerability’ to show how potential harms or wrongs to individuals who experience psychosis can be conceptualised as stemming from different sources, or layers, of vulnerability. I argue that a layered notion of vulnerability might serve as a common ground to achieve the ethical integration needed to ensure that biomedical innovation can truly benefit, and not harm, individuals who suffer from psychosis. (shrink)

It is untrue that the elderly in South Africa are probably discriminated against in healthcare as the result of inadequate legislation that does not conform to international standards. The National Health Act recognises vulnerability and gives expression to it. Respect for vulnerability has not yet been introduced to fundamental political and bioethical frames of reference in SA and that is probably the reason why the concept and right have not become part of the ethical awareness in healthcare. The appeal of (...) this article is that respect for vulnerability must be brought to conform to the Universal Declaration on Bioethics and Human Rights by declaring the ethical principle as an independent human right. (shrink)