Sage Journals: Discover world-class research

Abstract

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.

Keywords

philosophical aspects euthanasia and assisted suicide vulnerability autonomy terminal care death and dying clinical ethics

Introduction and background

The concept of vulnerability is relatively new in bioethics; it was used for the first time in the Belmont Report in 1979, which presented ethical principles and guidelines for research on human subjects.^1,2 It became relevant outside of research ethics after the adoption of the Declaration on Bioethics and Human Rights by UNESCO in 2005 (Article 8, Respect for human vulnerability and personal integrity^2,3) and was further developed and defined in feminist ethics, for which it is one of the central ethical concepts.⁴

Although different definitions of vulnerability in bioethics exist, some appear to be the most dominant. Robert Levine approached vulnerability by focusing on autonomy, defining it as a ‘substantial incapacity to protect one's own interests’.^2,5 Samia Hurst suggested that ‘vulnerability in research and healthcare should be defined as an identifiably increased likelihood of incurring additional or greater wrong’ and that we should start from the ‘wrongs’ that may occur.⁶ Florencia Luna argued that vulnerability should be perceived as ‘relational’ and ‘dynamic’ and should be considered with regards to a particular context.⁷ Several scholars distinguish two basic types of vulnerability, introduced by O’Neill.⁸ The first type is persistent vulnerability (also named inherent, intrinsic, primary and ontological), which is an essential feature of all humans as frail and mortal beings, dependent on others.^2,6,7,9 The second, circumstantial type of vulnerability (also named external, contextual, secondary, restrictive or alterable) varies among individuals due to the circumstances that make people more susceptible to harm, such as disease, social or economic conditions.^2,6,7,9–11 Some authors also distinguish pathogenic vulnerability, by which they mean vulnerability created or intensified by inappropriate responses to it, for example, by overly paternalistic interventions.^4,12

One of the most common domains in health care where the notion of vulnerability is used is end-of-life care.⁹ As Stienstra and Chochinov stated: ‘The process of dying sees mounting vulnerability punctuated by increasingly difficult physical, psychosocial, and spiritual/existential challenges’.¹³ In some countries, the range of end-of-life care includes euthanasia and assisted suicide (EAS).¹⁴ Euthanasia is defined as the intentional ending of the patient's life by a physician upon explicit patient request, and physician-assisted suicide (PAS) as a physician's prescription of drugs that enable a patient to end his or her own life.^14,15 Although a wish to hasten death has different grounds among patients, suffering is a common denominator. Physical pain is relatively more manageable in comparison to other common reasons for suffering, such as the affected perception of one's identity due to increasing dependence on others, loneliness and loss of meaning or hope for a better future.^16,17 Because requesting EAS is a radical decision, most patients who make it have significant existential reasons, which by their very nature increase vulnerability. As Terrón stated, ‘[t]alking about a dignified death is inseparable from thinking about the unavoidable experience of extreme existential and social vulnerability’.¹⁸

However, vulnerability in the context of EAS is anything but an unequivocal concept. This paper aims to analyse the uses and implications of the concept of vulnerability as they appear in the literature on EAS and to consider who is the most vulnerable in the context of EAS. To that end, an exploratory review of the scholarly literature has been conducted, through which we identified the main uses of the concept (see Box 1). The most conventional one is vulnerability as a consequence of diminished autonomy or social oppression, which implies a need for protection.^19–21 Since protection is also exercised by limiting access to EAS for a whole group of patients (e.g., those with psychiatric disorders), strong appeals for non-discrimination against ‘the vulnerable’ also appear in the literature.^22–26 Furthermore, new interpretations of vulnerability in EAS have been identified, which suggest that those traditionally proclaimed as vulnerable are not necessarily the most vulnerable in an EAS setting, but it can be those whose autonomy is perceived to be greater due to their social status. The explanation offered is their potentially higher susceptibility to harmful social messages about the meaninglessness of suffering and unproductive life.^13,27–30 Finally, vulnerability is a complex, multi-perspective and multi-layered concept, which means that different stakeholders involved in EAS practices, not only patients, are vulnerable and that vulnerability is present in different aspects of a human being (i.e., physical, mental, moral, social and spiritual).^7,31–34 Acknowledging the all-pervading vulnerability in EAS practices grounds the discourse on EAS on a sounder anthropological view of the human being, which is one of the key aspects in ethical decision-making. Complementing the concept of autonomy, vulnerability seems to support the arguments that are unfavourable to the legalisation of EAS.

Box 1:

Methods

Exploratory review of the literature on vulnerability in EAS was conducted in the PubMed database in November and December 2021. Three groups of search terms formed the following search string:

(bioethic* OR ethic* OR philosophy OR anthropology) AND (vulnerab*) AND (euthanasia OR assisted suicide OR medical aid in dying OR medically assisted dying OR assisted dying).

We focused on the literature published after the year 2000, which comprised roughly 142 hits. Both empirical and normative articles were included in the initial title- and abstract-based review, through which we identified the most relevant papers regarding vulnerability in EAS. Additional potentially relevant articles found in reference lists and other sources, such as legal documents, were included. Based on this review, we have distinguished different uses of the notion, which served as a framework for our discussion.

A need for protection of the vulnerable in EAS practices

Since the introduction of the notion of vulnerability into bioethical discourse, it has implied a need for protection.^1,35 In the case of EAS, protecting the vulnerable from potential harm is expressed both in legislation and scholarly literature.

In every society, some individuals want to take advantage of others, and it is the duty of the government to protect those at greater risk of being harmed by implementing corresponding laws.³⁶ In the case of EAS, it is the aim of safeguards and due care criteria to prevent misuse and protect those that are the most vulnerable from being harmed by its practices.³⁷ In European countries that have decriminalised EAS, clear guidelines on its practice are required, as was concluded in the judgement by the European Court of Human Rights, 14 May 2013 (Gross vs Switzerland case).³⁸ Safeguards mainly focus on ensuring the competency of EAS recipients, the eligibility of medical conditions for EAS, and that the request is made of their own volition.^39–41

Ethical discourse on EAS is also concerned with the risk of harming the vulnerable, which is one of the most frequently cited reasons for opposing EAS legalisation.^20,21 Authors usually define the vulnerable by portraying concrete groups with one or more typical features, such as young or old age, impaired cognitive capacity, lower social status and similar. The American College of Physicians defined the vulnerable as the sick, the elderly, children, the disabled, the poor and members of minority groups and expressed worries about subtle biases and adverse judgements on the worth of their lives, which legalisation of EAS could bring.⁴² Battin et al. sought evidence of any disproportionate use of EAS among vulnerable groups, which she defined as the elderly, women, the uninsured, people with low educational status, the poor, the physically disabled or chronically ill, minors, people with psychiatric illnesses and racial or ethnic minorities. Their results showed no current evidence of the disproportionate impact of EAS on patients in those groups.²¹ However, these conclusions have been questioned by some authors, which will be discussed in the following.^21,27,28,37 An extensive empirical study on views of American Geriatrics Society members on PAS specified vulnerabilities of their patients as low health literacy, low English proficiency, disability, dependency or frailty. About 70% of respondents were concerned about the coercion of these patients to request PAS, and some expressed additional concerns about the greater difficulty ‘the vulnerable’ could have in accessing PAS.¹⁹ Alacreu-Crespo et al. argued that psychiatric patients are more vulnerable to the recently adopted euthanasia law in Spain. One of the reasons, they claim, is a lack of psychiatrists and limited access to (public) mental health care, which makes it impossible to provide sufficient psychiatric treatment and proper assessment of every EAS seeker.⁴³

Appeals to protecting the vulnerable from harm do not define what represents harm in EAS practices. The key point seems to be recognition of the so-called ‘life worse than death’. Is any life, even a suffering one, better than no life or can suffering undermine the dignity of a person to the extent that ending their life at their request is seen as lesser harm?¹³ According to Axel Bauer, with the legalisation of EAS, we presuppose that not being able to die is worse than death. However, he argues that ‘until we ourselves have crossed that frontier, we do not know this for certain’.⁴⁴ The two aspects of harm in EAS that appear to be agreed upon by corresponding laws are the following: EAS performed against a patient's autonomous will, and the execution of EAS in a voluntarily requesting competent patient, but when his or her medical condition does not justify (at least legally) ending their life. The problem is that both aspects of harm have a wide range of interpretation. The criteria set in laws are arbitrary and only roughly defined, which means that there are always cases that divide the professional and the lay public.^40,45–47

The protection, which the notion of vulnerability implies, can be exercised by different means. The most general is not decriminalising EAS in the country, perhaps even despite an acknowledgement that in exceptional cases, EAS practices would be justified.²⁰ However, as evidence shows, the prohibition of EAS does not exclude potential cases.^48,49 We would argue that the prohibition of EAS serves as an appropriate safeguard only when physicians and other health care professionals are aware of and align with the ethical grounds for it and when all suspicious cases of illegal EAS are investigated and, if necessary, prosecuted. In countries where EAS is legal, safeguards and due care criteria are put in place in EAS laws to minimise harm to the vulnerable. Examples include: requiring consultation of a second physician, written consent and a minimum period between the request and the execution of EAS, among others.³⁷ Some jurisdictions have implemented criteria that exclude whole groups of patients regarded as vulnerable to EAS practices. This approach puts less burden on physicians who otherwise need to decide on the eligibility of a wide variety of patients but raises some other challenges, which will be discussed in the next section.²³

Danger of discrimination against those proclaimed as vulnerable

Since some legislation does not grant access to EAS to the groups of patients labelled as vulnerable (e.g., minors, psychiatric patients, patients with advanced dementia etc.), there are strong appeals about discriminatory aspects of this practice.^23,24,26,41 Labelling groups as vulnerable is criticised for removing agency from large groups of diverse patients, among whom are also competent individuals.²⁴ As Rooney et al. argue: ‘Speaking of “vulnerable groups” is to formulate blanket statements which likely and unacceptably overlook a fair number of exceptions’.²⁶ Some argue that limiting EAS practice to patients with physical illness unjustly discriminates against competent patients with psychiatric illness who may feel that life with their condition is not worth living.^24,26,50 As Dembo et al. stated, ‘[i]t is unjustifiable to exclude psychiatric patients from benefitting from a medical intervention that is designed to preserve autonomy and reduce suffering, without giving due consideration to individual variability’.²⁴ Labelling psychiatric patients as vulnerable is contrary to programs aimed at combatting the stigma of mental diseases through the empowerment and inclusion of patients to the greatest extent possible.^24,26 As Riddle stated, referring to the vulnerability of people with disabilities: ‘upholding respect for the disabled requires the legalization of assisted dying’.²⁵

The issue of discrimination against the vulnerable is encompassed by the idea of pathogenic vulnerability, which suggests that not treating the vulnerable as autonomous persons deepen their vulnerability.¹² The affirmation of full personhood means respecting inherent dignity, individual autonomy and independence of the person, despite their potential disability, physical or mental.⁵¹ Anti-discrimination principles argue against different treatment solely on the basis of some arbitrarily established grounds, such as age, disability, presence of mental disease and similar.⁵² Criteria for EAS target a diverse society and are arbitrary, which means that practically every requirement in EAS legislation has discriminatory potential. This argument suggests that the only two possible alternatives are making EAS accessible to all (competent?) people without further preconditions or prohibiting the practice in general. Between these two extremes, the criteria can be more or less stringent, giving more or less responsibility – and with it, moral burden – to individual physicians or teams of professionals that are deciding on particular cases.

The arbitrariness of conditions and appeals against discrimination represent the grounds for expanding the law over time.⁵³ That tendency, which is a concern of the slippery slope argument, can be observed in the countries that legalised EAS some time ago.^{37,42,54–57} Belgium is one example where the so-called ‘normalisation’ of EAS has been observed.⁵⁸ Over the past years, cases that only slightly differed from those already accepted have been approved by referring to the principles of justice and equality, which require that similar cases be treated similarly.⁵⁸ Alternatively, making the conditions stricter through time and narrowing the scope of EAS is very unlikely since it requires justification of differential treatment, which in our Western society is especially demanding when the limitation of individual autonomy is at stake. As Bauer suggested, the logic of EAS itself is grounded in the high valuation of individual autonomy; therefore, it cannot be restricted to exceptional cases of severe disease.⁴⁴

Discrimination-based arguments against limiting EAS have strong potential because autonomy is, from a Kantian view, an essential part of one's dignity.⁵⁹ Respect for autonomy has been one of the fundamental ethical and political principles, especially in countries of the Western tradition, over the previous five decades.⁶⁰ However, one may ask, in the case of EAS, when the question is about ending one's life, is giving someone an option to choose EAS a way to promote their dignity or to devalue their life? Or, further, what are the costs of being inclusive, meaning the society's perception of the value of the lives of ‘the vulnerable’? From a public health perspective, limiting individual autonomy is believed to be justified by referring either to the beneficiary nature of the intervention, which makes it paternalistic, or on the grounds of justice, meaning to prevent harm to vulnerable members of society.⁶¹ Laws prohibiting or regulating EAS essentially have both. They target a very heterogenous society in which – ideally speaking – the majority benefits from the law; however, it is unavoidable that some individuals feel oppressed, and their autonomy, in cases in which EAS might be justified, is sacrificed for the common good. As Stephenson stated: ‘There are many examples in our society where individual autonomy has to be limited because of the risks posed to others and the ramifications for society as a whole. I believe that this [EAS] is such a case’.²⁰

Despite disagreement about whether limitation of one's autonomy is justified in the case of EAS, a sensitive and respectful approach that avoids blindly ‘labelling’ certain people as vulnerable is crucial.¹³

The most autonomous as the most existentially vulnerable

The conventional understanding of vulnerability in an EAS context has been questioned by some authors who do not accept the conclusions of empirical studies implying that EAS does not disproportionately impact the vulnerable.^{21,27–29,62,63} Some argue that those typically considered to be most autonomous or ‘least vulnerable’ are actually more vulnerable to EAS.^27–29 Finlay and George, for example, state that if the less educated are less likely to resort to EAS, perhaps it is the more educated who are more vulnerable in that context.²⁸ Similarly, Krag offers a new conception of vulnerability, which demonstrates how ‘rich, educated, white males, who are typically regarded as having their autonomy enhanced by their social status, are just as, if not more, vulnerable to threats posed by PAS/VAE [sic] as a result of the harmful social messages at work just below the surface of contemporary Western culture’.²⁷ It is messages about the value of human life that are potentially harmful, as young and healthy white men have been the standard of normalcy since the Enlightenment, with which the value of other lives is compared.²⁷

Arguments about why vulnerability in EAS may reach beyond its classical understanding derive from the essentially existential questions of EAS, which is reflected in Nietzsche's ‘He who has a why to live, can bear with almost any how’.⁵⁵ Loss of meaning in life, which can be – but not necessarily – accompanied by physical or mental disease, is considered one of the crucial reasons for an EAS request. Therefore, the most vulnerable to EAS may be regarded as the most prone to loss of meaning in their lives.

Durkheim's pioneering work on suicide (1897) gives us some insight into who they might be.⁶⁴ He distinguished three major factors that contributed to higher rates of suicide, corresponding to the three types of suicide that he described. The first type, egoistic suicide, is the consequence of insufficient integration of individuals into their social context, which means that they lack some higher, transcendental goals in their lives. That may explain the higher incidence of EAS in more individualistically oriented societies and in those who live alone.^14,65 The second type, altruistic suicide, is the result of the excess integration of individuals into society and their wish to sacrifice their lives for it. In the EAS context, this argument is essential that when one becomes a burden to relatives or society, one may have a ‘duty to die’. As Hardwig explained: ‘A death motivated by my desire to spare the futures of my loved ones might well be a better death for me than the one I would get as a result of opting to continue my life as long as there is any pleasure in it for me’.⁶⁶ The third type of suicide, anomic suicide, is related to changes in society and subsequent moral confusion, lack of direction and unlimited desires that people have; factors that can also help explain EAS figures since constant dissatisfaction and limitless desires and options in life are more often attributed to higher social classes.⁶⁵

Similar to Durkheim's insights, the results of the qualitative study on existential suffering and assisted suicide in Switzerland also suggest that society is to some extent responsible for existential suffering since it gives high importance to physical appearance and being productive, which may be disrupted by disease and/or ageing. As they wrote, ‘[p]erceptions of old age or physical decline are influenced by social contexts, they shape the way we see ourselves, and this can lead to deep suffering’.¹⁷ Svenaeus, exploring the phenomenology of suffering in the end-of-life context, suggested that adverse perceptions of the value of life, as well as other values and ideals that we embody, are not necessarily conscious or within our awareness but rather subconscious. Thus, we are unaware when we regard a successful and meaningful human life as a life that concerns utility rather than human flourishing in all aspects of a human person. Such attitudes were incorporated not only in totalitarian systems, such as Nazism and communism, but may also prosper in ‘liberal democracies in which politics becomes business-like and in which existential questions become private-life issues only’.³⁰

However, as Krag notes, not every person is equally vulnerable to harmful social messages: ‘Although it is not always easy, oppressed persons can and do find alternative sources of value despite the prevalence of culturally imposed messages painting them as sources of disvalue’.²⁷ He provided three possible ways by which people of groups, traditionally regarded as vulnerable, find their value: in defiance of the dominant culture, in one's connectedness with others and in the experience of a transcendent reality.²⁷ Religion has a well-known protective role, whether through providing meaning in suffering or forbidding the practice of EAS.^27,65 As Finlay and George suggest, ethnic minorities are less vulnerable because they more often hold religious beliefs that are unfavourable to EAS.²⁸

Since EAS is essentially linked to existential issues, we would argue that vulnerability to meaninglessness, which could be framed as existential vulnerability, is fundamental in the context of EAS. Being vulnerable is often regarded as the opposite of being autonomous and capable of decision-making, which means that existential vulnerability (which might even be enhanced in the most autonomous) does not receive sufficient attention.¹² As Krag concludes, ‘the right to self-determination is not as sovereign as has typically been assumed’.⁶⁷ Sprung et al. suggest that physicians’ role should be to help patients ‘change their hopes and expectations’ rather than resort to EAS, since many requests originate in depression, loss of meaning and dignity, hopelessness and social isolation.⁵⁵ High-quality palliative care, which should also target existential issues, is often emphasised as an alternative to EAS. Several so-called ‘existential interventions’ exist within palliative care, for example, logotherapy, meaning-centred psychotherapy, cognitive therapy, existential intervention and dignity therapy. However, there is still a need to investigate how to optimally address existential questions within palliative care.⁶⁸

Vulnerability as a multi-layered and multi-perspective concept

Analysing the concept of vulnerability in EAS settings and defining the vulnerable suggests that the traditional understanding with its critiques of discrimination appears to be far too limited. Also, alternative conceptions that take subtle societal influences on life's meaning into account might not be sufficient. With an increasing number of scholars recognising the complexity of dynamics through which vulnerability is experienced, a more comprehensive approach seems to be needed.^10,18,31,35 Joachim Boldt, for example, categorised vulnerability into physical, emotional and cognitive domains: physical as suffering from diseases, emotional as emotional distress and cognitive implying situations of cognitive uncertainty patients may experience.³⁵ The review by Sanchini et al. identified six dimensions of older adults’ vulnerability: physical; psychological; relational/interpersonal; moral; sociocultural, political and economic; and existential/spiritual.⁹ In a dignity-enhancing care approach to EAS in persons with dementia, Gómez-Vírseda and Gastmans have (originating from the experiences of different stakeholders) noted that vulnerability was perceived on all the levels (dimensions) of a human person and by all involved in EAS. They have framed it as a multi-layered and multi-perspective concept.³¹

Although physical vulnerability is often the most prominent in patients due to their underlying medical condition, vulnerability on other levels of a human person is shared among everyone involved.

The vulnerability of care providers is sometimes explicitly mentioned in the literature^10,13,31,34: on providers’ emotional level as their own suffering with the patient, on a cognitive level due to therapeutic helplessness they may feel¹³ and on a moral level as they may experience the moral burden of being involved in a morally controversial act.³⁴ However, we could say that in the legal setting, their vulnerability is overlooked since they are regarded as strong and emotionless subjects, competent to make objective decisions and execute EAS without enduring significant consequences. Health providers can, as any human being, be subject to subtle pressures posed both by expectations of others (i.e., colleagues, patients and relatives) and by their own feelings of powerlessness.⁶⁹ This can lead to disregard of their moral stance based on their conscience and result in psychological and moral distress, doubts and questions, which are reported by doctors and nurses that are involved in EAS.^69–71 The prevalence of moral distress is reported to be higher in more ethically sensitive clinicians and can result in adverse emotional reactions, physical symptoms, burnout and behaviour changes.⁷² Alessandra Colaianni reflected upon the moral vulnerabilities of physicians in the light of their participation in the Nazi's atrocities during the 2nd World War. According to her, moral vulnerabilities are endemic also to contemporary medical culture and open up the possibility of physicians transitioning ‘from healers to murderers’. Therefore, it is crucial to be aware of these vulnerabilities and not allow authorities or social pressures to overcome one's moral intuition so as to ground the medical profession in medical ethics and human rights.⁷³

Another important perspective on vulnerability in EAS, which is present only implicitly in the literature, is the vulnerability of society as a whole. Some authors emphasise that we should be more aware of our interconnectedness and interdependence, as this is what makes us human and is essential for our growth and development. They believe that there are many cases in society in which the autonomy of individuals needs to be limited to prevent the risks posed to fellow human beings and that the legal right to request EAS is such a case.^20,27 The impact of every single case of EAS on society can be compared to a more obvious example of our interrelations and interpersonal influences, that of celebrities’ suicide. It is well-known that they can be followed by an increase in suicide rates in the general population.⁷⁴ Similar dynamics of implicitly transferred messages about life's meaning are potentially present in the case of every suicide or EAS.

The broader impact of EAS is also considered by American philosopher David Velleman, who believes that ‘a widely recognized right to die would have the paradoxical effect of harming some people who never exercise it as well as some who exercise it and are better off for doing so’.⁷⁵ He is concerned about unfairly burdening severely ill patients by taking away their opportunity of staying ‘alive by default’ because they would be forced to justify their existence to the world.^75,76 Although he does not conclude that a universal right to die does not exist, he believes that this right may be among those that should not be recognised because of the risks posed to many people and difficulties in identifying its proper subjects.⁷⁵

Recognising vulnerability of different stakeholders in EAS, including the society, Robert Goodin's claim that the vulnerability of other human beings is the source of our moral responsibility towards them, reveals elements of reciprocity.^77,78 By being aware and conscious of our interconnectedness and of vulnerabilities that arise from it, we can recognise the responsibilities we have towards each other, which we are called to exercise through care. Good care is sensitive to the deepest vulnerabilities of the person and tries to respond accordingly. In our view, true care reaches beyond the apparent clash between respect for individual's autonomy and imposition of paternalistic, benevolent actions; respect for one's autonomous wishes as well as an awareness of the social context is an integral part of good care. With that in mind, the legalisation of EAS justified by individualistic understanding of autonomy may appear as a superficial solution to the complex problems in which the most vulnerable pay the price.

We believe that taking a broader view of the end-of-life care and acknowledging social interactions may even give us an insight into the important role that the very ill, the disabled and the suffering have in our society. One of the important lessons they can teach us is about the fragility of human life and the hidden aspects of life's meaning and value, which are independent of any external circumstances. The lesion can be extremely important in a contemporary world full of limitless desires and ideals of a life free of suffering.

Conclusion

The present analysis of the concept of vulnerability in EAS settings revealed the complexity of its uses and implications. We do not conclude that the traditional use, which encourages the protection of the most vulnerable groups, is no longer appropriate. However, the reflective overview showed that understanding of vulnerability cannot simply be limited to the protection of the groups traditionally regarded as vulnerable, with consequent appeals to non-discrimination. Since EAS is an existential issue, the key aspect of vulnerability seems to be vulnerability to losing meaning in the circumstances of suffering. That means that the most vulnerable could be defined as those that are the most susceptible to losing meaning when confronted with suffering, perhaps because of valuing their lives by transient human qualities, such as intellect, productivity, ability to take care of oneself and similar. Furthermore, some authors show that vulnerability can be experienced on different levels by a human person and by different stakeholders. The two aspects that are often overlooked are the vulnerability of society to implicit messages on life's values, and the moral vulnerability of caregivers who can be pressured to override their moral stances.

The main contribution of the broadened perception of the concept of vulnerability is perhaps in forming a sounder anthropological view of a human being. Vulnerability balances and complements the understanding of the concept of autonomy and thus strengthens the foundations of the discourse on EAS. Justification of EAS that is based on the questionable perception of a human being as an isolated, rational and completely autonomous is insufficient and enables serious and irreparable misuses. An awareness that all the stakeholders involved in EAS, including the wider society, are potentially or even unavoidably vulnerable, in our opinion and in the opinion of several scholars supports the arguments that are unfavourable to the legalisation of EAS.

Footnotes

Declaration of conflicting interests

The authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding

The authors received no financial support for the research, authorship, and/or publication of this article.

ORCID iD

Meta Rus

References

The Belmont Report, https://www.hhs.gov/ohrp/regulations-and-policy/belmont-report/read-the-belmont-report/index.html (1979).

ten Have

. Respect for human vulnerability: the emergence of a new principle in bioethics. J Bioeth Inq 2015; 12: 395–408.

Universal Declaration on Bioethics and Human Rights, http://portal.unesco.org/en/ev.php-URL_ID=31058&URL_DO=DO_TOPIC&URL_SECTION=201.html (2005).

Catriona

Mackenzie

Rogers

Wendy

Dodds

Susan

eds.

Vulnerability: New essays in ethics and feminist philosophy. New York: Oxford Academic, 2014.

Levine

. Ethics and regulation of clinical research. Urban & Schwarzenberg, 1981.

Hurst

. Vulnerability in research and health care; describing the elephant in the room? Bioethics 2008; 22: 191–202.

Luna

. Elucidating the concept of vulnerability: layers not labels. Int J Fem Approaches Bioeth 2009; 2: 121–139.

O'Neill

. Towards justice and virtue: A constructive account of practical reasoning. Cambridge: Cambridge University Press, 1996.

Sanchini

Sala

Gastmans

. The concept of vulnerability in aged care: a systematic review of argument-based ethics literature. BMC Med Ethics 2022; 23: 84.

10.

Mergen

Akpınar

. Vulnerability: an integrative bioethics review and a proposed taxonomy. Nurs Ethics 2021; 28: 750–765.

11.

Kottow

. The vulnerable and the susceptible. Bioethics 2003; 17: 460–471.

12.

Morberg Jämterud

. Acknowledging vulnerability in ethics of palliative care - A feminist ethics approach. Nurs Ethics 2022; 29: 952–961.

13.

Stienstra

Chochinov

. Vulnerability, disability, and palliative end-of-life care. J Palliat Care 2006; 22: 166–174.

14.

Mroz

Dierickx

Deliens

, et al. Assisted dying around the world: a status quaestionis. Ann Palliat Med 2021; 10: 3540–3553.

15.

Broeckaert

. Treatment decisions in advanced disease: a conceptual framework. Indian J Palliat Care 2009; 15: 30–36.

16.

Rodríguez-Prat

Balaguer

Booth

, et al. Understanding patients’ experiences of the wish to hasten death: an updated and expanded systematic review and meta-ethnography. BMJ Open 2017; 7: e016659.

17.

Gaignard

Hurst

. A qualitative study on existential suffering and assisted suicide in Switzerland. BMC Med Ethics 2019; 20: 34.

18.

Muñoz Terrón

. Vulnerable dignity, dignified vulnerability: intertwining of ethical principles in end-of-life care. Int J Environ Res Public Health 2021; 18. DOI: https://doi.org/10.3390/ijerph18020482

19.

Rosenberg

Butler

Caprio

, et al. Results from a survey of American Geriatrics Society Members’ views on physician-assisted suicide. J Am Geriatr Soc 2020; 68: 23–30.

20.

Stephenson

. Assisted dying: a palliative care physician's view. Clin Med 2006; 6: 374–377.

21.

Battin

van der Heide

Ganzini

, et al. Legal physician-assisted dying in Oregon and The Netherlands: evidence concerning the impact on patients in “vulnerable” groups. J Med Ethics 2007; 33: 591–597.

22.

Gale

Barak

. Euthanasia, medically assisted dying or assisted suicide: time for psychiatrists to say no. Australas Psychiatry 2020; 28: 160–163.

23.

Konder

Christie

. Medical Assistance in Dying (MAiD) in Canada: a critical analysis of the exclusion of vulnerable populations. Healthc Policy 2019; 15: 28–38.

24.

Dembo

Schuklenk

Reggler

. “For their own good”: a response to popular arguments against permitting Medical Assistance in Dying (MAID) where mental illness is the sole underlying condition. Can J Psychiatry 2018; 63: 451–456.

25.

Riddle

. Assisted dying & disability. Bioethics 2017; 31: 484–489.

26.

Rooney

Schuklenk

van de Vathorst

. Are concerns about irremediableness, vulnerability, or competence sufficient to justify excluding all psychiatric patients from medical aid in dying? Health Care Anal 2018; 26: 326–343.

27.

Krag

. Rich, white, and vulnerable: rethinking oppressive socialization in the euthanasia debate. J Med Philos 2014; 39: 406–429.

28.

Finlay

George

. Legal physician-assisted suicide in Oregon and The Netherlands: evidence concerning the impact on patients in vulnerable groups – another perspective on Oregon's data. J Med Ethics 2011; 37: 171–174.

29.

Downar

Fowler

Halko

, et al. Early experience with medical assistance in dying in Ontario, Canada: a cohort study. CMAJ 2020; 192: E173–e181.

30.

Svenaeus

. To die well: the phenomenology of suffering and end of life ethics. Med Health Care Philos 2020; 23: 335–342.

31.

Gómez-Vírseda

Gastmans

. Euthanasia in persons with advanced dementia: a dignity-enhancing care approach. J Med Ethics 2022; 48: 907–914.

32.

Høy

Lillestø

Slettebø

, et al. Maintaining dignity in vulnerability: a qualitative study of the residents’ perspective on dignity in nursing homes. Int J Nurs Stud 2016; 60: 91–98.

33.

Koffman

Morgan

Edmonds

, et al. Vulnerability in palliative care research: findings from a qualitative study of black Caribbean and white British patients with advanced cancer. J Med Ethics 2009; 35: 440–444.

34.

Pesut

Thorne

Storch

, et al. Riding an elephant: a qualitative study of nurses’ moral journeys in the context of Medical Assistance in Dying (MAiD). J Clin Nurs 2020; 29: 3870–3881.

35.

Boldt

. The concept of vulnerability in medical ethics and philosophy. Philos Ethics Humanit Med 2019; 14. DOI: https://doi.org/10.1186/s13010-019-0075-6

36.

Beuselinck

. 2002–2016: Fourteen Years of Euthanasia in Belgium: First-Line Observations by an Oncologist. In: MacKellar

Gastmans

Jones

(eds) Euthanasia and assisted suicide: lessons from Belgium. Cambridge: Cambridge University Press, 2017, pp.86–100.

37.

Pereira

. Legalizing euthanasia or assisted suicide: the illusion of safeguards and controls. Curr Oncol 2011; 18: e38–e45.

38.

Black

. Existential suffering and the extent of the right to physician-assisted suicide in Switzerland: gross v Switzerland [2013] ECHR 67810/10. Med Law Rev 2014; 22: 109–118.

39.

Voluntary assisted dying act 2019, https://www.legislation.wa.gov.au/legislation/prod/filestore.nsf/FileURL/mrdoc_42491.pdf/$FILE/Voluntary%20Assisted%20Dying%20Act%202019%20-%20%5B00-00-00%5D.pdf?OpenElement (2019).

40.

Brill

Nijhoff

(publisher) The Belgian act on euthanasia of May, 28th 2002. Eur J Health Law 2003; 10: 329–335.

41.

Bill C-14. An act to amend the criminal code and to make related amendments to other acts (Medical assistance in dying), https://laws-lois.justice.gc.ca/eng/annualstatutes/2016_3/fulltext.html (2016, accessed February 2022).

42.

Snyder Sulmasy

Mueller

. Ethics and the legalization of physician-assisted suicide: an American College of Physicians Position Paper. Ann Intern Med 2017; 167: 576–578.

43.

Alacreu-Crespo

Giner

Courtet

. Psychiatric patients are more vulnerable to the Spanish euthanasia law? Rev Psiquiatr Salud Ment 2021; 14: 231–233.

44.

Bauer

. Euthanasia and assisted suicide: realization or abandonment of self-determination? In Recent results in cancer research Fortschritte Der Krebsforschung Progres dans les recherches sur le cancer, 2021, 218, pp.219–232. DOI: https://doi.org/10.1007/978-3-030-63749-1_14.

45.

Tuffrey-Wijne

Curfs

Finlay

, et al. Euthanasia and assisted suicide for people with an intellectual disability and/or autism spectrum disorder: an examination of nine relevant euthanasia cases in The Netherlands (2012-2016). BMC Med Ethics 2018; 19: 17.

46.

The Dutch termination of life on request and assisted suicide (review procedures) act. Ethical Perspect 2002; 9: 176–181.

47.

Florijn

. Extending’ euthanasia to those ‘tired of living’ in The Netherlands could jeopardize a well-functioning practice of physicians’ assessment of a patient's request for death. Health Policy 2018; 122: 315–319.

48.

Beine

Schubert

. Unreported intentional life-ending acts in physicians and nurses. Deutsch Med Wochenschr 2017; 142: e83–e88.

49.

Tamayo-Velázquez

Simón-Lorda

Cruz-Piqueras

. Euthanasia and physician-assisted suicide: knowledge, attitudes and experiences of nurses in andalusia (Spain). Nurs Ethics 2012; 19: 677–691.

50.

Schuklenk

van de Vathorst

. Treatment-resistant major depressive disorder and assisted dying. J Med Ethics 2015; 41: 577–583.

51.

Burns

. Mental health and inequity: a human rights approach to inequality, discrimination, and mental disability. Health Hum Rights 2009; 11: 19–31.

52.

Holmes

. Anti-Discrimination rights without equality. Mod Law Rev 2005; 68: 175–194.

53.

Vanden Berghe

Mullie

Desmet

, et al. Assisted dying: the current situation in flanders: euthanasia embedded in palliative care. In: MacKellar

Gastmans

Jones

(eds) Euthanasia and assisted suicide: lessons from Belgium. Cambridge: Cambridge University Press, 2017, pp.65–66.

54.

Monacelli

Martini

Odetti

, et al. Physician assisted suicide and clinical vulnerability: a slippery slope. Clin Ter 2016; 167: e92–e95.

55.

Sprung

Somerville

Radbruch

, et al. Physician-Assisted suicide and Euthanasia: emerging issues from a global perspective. J Palliat Care 2018; 33: 197–203.

56.

Koch

. MAID's slippery slope: a commentary on downie and schuklenk. J Med Ethics 2021; 47: 670–671.

57.

Lewis

. The empirical slippery slope from voluntary to non-voluntary euthanasia. J Law Med Ethics 2007; 35: 197–210.

58.

MacKellar

. Some possible consequences arising from the normalisation of euthanasia in Belgium. In: MacKellar

Gastmans

Jones

(eds) Euthanasia and assisted suicide: lessons from Belgium. Cambridge: Cambridge University Press, 2017, pp.217–218.

59.

Johnson

Cureton

Kant’s moral philosophy, https://plato.stanford.edu/archives/spr2022/entries/kant-moral/ (2022, accessed February 2022).

60.

Stammers

. The evolution of autonomy. New Bioeth 2015; 21: 155–163.

61.

Nys

TRV

. Paternalism in public health care. Public Health Ethics 2008; 1: 64–72.

62.

Rietjens

Deschepper

Pasman

, et al. Medical end-of-life decisions: does its use differ in vulnerable patient groups? A systematic review and meta-analysis. Soc Sci Med 2012; 74: 1282–1287.

63.

Emanuel

Onwuteaka-Philipsen

Urwin

, et al. Attitudes and practices of euthanasia and physician-assisted suicide in the United States, Canada, and Europe. JAMA 2016; 316: 79–90.

64.

Durkheim

. Suicide: a study in sociology. London: Penguin, 2006.

65.

Steck

Junker

Maessen

, et al. Suicide assisted by right-to-die associations: a population based cohort study. Int J Epidemiol 2014; 43: 614–622.

66.

Hardwig

. Is there a duty to die? Hastings Cent Rep 1997; 27: 34–42.

67.

Gómez-Vírseda

de Maeseneer

Gastmans

. Relational autonomy: what does it mean and how is it used in end-of-life care? A systematic review of argument-based ethics literature. BMC Med Ethics 2019; 20: 76.

68.

Terao

Satoh

. The present state of existential interventions within palliative care. Front Psychiatry 2021; 12: 811612.

69.

Bellens

Debien

Claessens

, et al. “It is still intense and not unambiguous.” Nurses’ experiences in the euthanasia care process 15 years after legalisation. J Clin Nurs 2020; 29: 492–502.

70.

Stevens

Jr . Emotional and psychological effects of physician-assisted suicide and euthanasia on participating physicians. Issues Law Med 2006; 21: 187–200.

71.

Papadopoulou

. David Albert Jones, Chris Gastmans, and Calum Mackellar, Euthanasia and assisted suicide: lessons from Belgium. Med Law Rev 2019; 27: 180–187.

72.

Kherbache

Mertens

Denier

. Moral distress in medicine: an ethical analysis. J Health Psychol 2022; 27: 1971–1990.

73.

Colaianni

. A long shadow: Nazi doctors, moral vulnerability and contemporary medical culture. J Med Ethics 2012; 38: 435–438.

74.

Hedman-Robertson

Sage

. Celebrity suicide. Crisis 2021; 42: 418–424.

75.

Velleman

. Against the right to die. In Beyond price. 1st ed. Open Book Publishers, 2015, pp.5–20.

76.

Symons

Chua

. ‘Alive by default’: an exploration of Velleman's unfair burdens argument against state sanctioned euthanasia. Bioethics 2020; 34: 288–294.

77.

Gastmans

. Dignity-enhancing nursing care: a foundational ethical framework. Nurs Ethics 2013; 20: 142–149.

78.

Goodin

. Protecting the vulnerable: a re-analysis of our social responsibilities. Chicago, IL: The University of Chicago Press, 1985.

Euthanasia and assisted suicide: Who are the vulnerable?

Abstract

Keywords

Introduction and background

A need for protection of the vulnerable in EAS practices

Danger of discrimination against those proclaimed as vulnerable

The most autonomous as the most existentially vulnerable

Vulnerability as a multi-layered and multi-perspective concept

Conclusion

Footnotes

Declaration of conflicting interests

Funding

ORCID iD

References