Any claims by psychiatrists1 to be able to improve people morally should be extremely modest. It is helpful to be reminded that psychiatrists have attempted to do this and still do so, nowadays usually unconsciously or implicitly. In fact where therapeutic approach embodies moral positions, as clarified for the psychoanalytic tradition by Edward Harcourt2, it is important for these to be made explicit so that they can be scrutinised.
People coming to see a psychiatrist are often in a personal crisis, whatever its cause (which may include the effects of mental disorder as well as factors in their lives contributing to that disorder). They may as a result may be driven to re-evaluate their lives, their choices and their relationships (there are parallels with the impact of serious physical illness and confrontation with disability and mortality). In fact any serious illness or intimation of mortality may generate the same kind of self-questioning. Such people are clearly faced with moral questions, whether that be regarding specific decisions, balancing their own needs with those of others, making hard choices or making amends. How they address these things will form part of their recovery and shape it. An important difference between physical and mental illness is that people living through the latter are more likely to be lonely, relatively unbefriended, isolated and short of support from family, friends or other social circles, or indeed alienated from them. They are thus at once more vulnerable and more likely to seek guidance from a mental health worker, and mental health workers may be more tempted to give it.
In my view psychiatrists should be wary of seeking directly to improve people morally in such situations, and concentrate on treating their mental disorder. Improvements in someone’s moral condition should be seen as a bonus rather than the goal. Psychiatrists, psychoanalysts and psychotherapists do not have a plausible claim to be more moral than anyone else, and most people are fortunate enough to find people elsewhere in their lives who act as some kind of moral touchstone, be they a parent, another relative, a friend, a teacher, a mentor, a work colleague, a priest, someone else who shows them kindness or indeed a public figure with whom they can strongly identify. Again, these sources of help may be less available to people to people with mental disorders
One way in which a psychiatrist or anyone offering a therapeutic alliance may contribute to someone’s moral understanding is through their own behaviour, for example by being honest, trustworthy and reliable, and concerned. In this way some rudiments of a model for other relationships may be seen. Beyond this, the psychiatrist job is usually to help people to break out of social isolation so that they do break out of their isolation and so find a wider range of non-professional people who can act as their sounding boards.
(It is interesting that some people who are very dismissive of the judgments made of their behaviour by others, have quite high expectations of doctors and therapists, in terms of confidentiality, punctuality and access to certain goods and services).
A further consideration which should encourage humility in any psychiatrist inclined to guide their patients morally is that their patients most often will be in a less favourable socioeconomic position than they are. This does not mean that they have no choices, but the range of choices open to them is likely to be narrower. This will have implications for the morality or otherwise of, for example, benefit fraud, or sex work, or breach of Covid-19 restrictions, or indeed of abortion.
Drug treatments in psychiatry may restore people’s level of concern for and awareness of the needs of others, but this is no different from the effects eg of analgesics in relieving somatic pain, which also makes people withdraw into themselves. In a wider sense, it could be said that morals depend on morale, in that relative freedom from pain, optimism of the will and a sense that change is possible are likely to be associated with a more generous and courageous spirit.
With respect to drugs given specifically to enhance moral behaviour, the studies in this area are limited by the way they measure moral decision-making, and the lack of a demonstrable link between the answers given to questionnaires and any sustained difference in behaviour3. In addition, when people use alcohol or another drug to give themselves the courage to say or do something difficult, or to seek a spiritual experience, there does have to be first the wish to take that challenge or make that decision. This applies to some studies of psychedelic drugs.
There is a more general point here. As Kant noted, changing in a desirable direction this or that quality in a person is no guarantee of moral behaviour:
Moderation in the affections and passions, self-control, and calm deliberation are not only good in many respects, but even seem to constitute part of the intrinsic worth of the person; but they are far from deserving to be called good without qualification, although they have been so unconditionally praised by the ancients. For without the principles of a good will, they may become extremely bad, and the coolness of a villain not only makes him far more dangerous, but also directly makes him more abominable in our eyes than he would have been without it.4
In the forensic arena, improvements in moral awareness and behaviour are again likely to arise as a bonus effect of treatment broadly understood, which includes physical restrictions for periods of time. It is important here to consider how constraints of certain kinds – prison, probation – may themselves play a part in moral improvement, for example by creating a space for enforced reflection, or by giving someone what may be the novel experience of being held to account for their behaviour. Such benefits should probably not be exaggerated.
When attempts have been made specifically to change the mental and moral set and behaviour of people with severe antisocial personality disorder, the results have not been encouraging5. A different approach, used with prisoners identified as having PTSD arising from their violent offending, appeared to be more promising as a way to open up a route to reflection and consideration of the impact on victims6. However this depended on the prisoners being willing to enter the treatment programme in this first place, which recalls the maxim that for someone to be open to arguments for acting in a good way they have first of all to recognise a distinction between acting in a good way and acting in a bad way.
An important influence on moral growth not mentioned in the article is that of the group. Most obviously this can be seen at work in settings such as AA, but also in group therapy more generally, which traditionally is supposed to make people more mature, rather than less neurotic as with individual therapy. Since morality is about interpersonal behaviour, it is not surprising that it is transmitted largely through groups, starting with parents then extended family then school, then social clubs, workplaces, sport and so on. Clearly the kind of lessons learned vary widely depending on the nature of these groups in practice, but they are likely to be much more influential than individual instruction.
For nine years I ran a weekly group for patients on a mixed-gender acute admission ward in a very ethnically and socially diverse town. This had a number of benefits, one important one being a continuing effort to develop at least a minimum morality for co-existence on the ward, through a mixture of discussion and, where it could be tolerated, group feedback to participants about their behaviour. The basic principles modelled were modest but important: the right to have your say, the right to be listened to and basic courtesy. Expressions of care and concern in this setting could be powerful and moving.
A more ambitious and articulated use of group therapy in an inpatient setting was described by Bion and Rickman in a military hospital in World War ll7
The effect of this approach to the problem of neurosis was considerable. There was a readiness, and sometimes an eagerness, to discuss both in public and private the social implications of personality problems. The neurotic is commonly regarded as being self-centred and averse from cooperative endeavour; but perhaps because he is seldom put in an environment in which every member is on the same footing as regards interpersonal relationships.

It is possible that psychiatrists could benefit from training in normative moral theories, but the effect of such training might be to make them less rather than more enthusiastic about direct effects to influence their patients’ moral development.

1. McConnell and colleagues refer to ‘psychiatry’, but these matters are relevant to all mental health professionals
2. Harcourt E 2015 The Place of Psychoanalysis in the History of Ethics Journal of Moral Philosophy
3. Crockett MJ et al 2010 Serotonin selectively influences moral judgment and behavior through effects on harm aversion https://www.pnas.org/doi/10.1073/pnas.1009396107
4. Kant E 1785 Groundwork of the Metaphysics of Morals
5. Tyrer P et al 2015 The lessons and legacy of the programme for dangerous and severe personality disorders Personality and Mental Health 9:96-106
6. Evans C et al 2007 Intrusive Memories and Ruminations Related to Violent Crime Among Young Offenders: Phenomenological Characteristics Journal of Traumatic Stress 20:183-196
7. Bion WR, Rickman J 1943 Intra-group tensions in the therapy: their study as the task of the group Lancet 242: 678-682

Philosophical arguments about autonomy and Medical Assistance in Dying (MAiD), such as those recently espoused by Wiebe and Mullin [1] in the BMJ Journal of Medical Ethics are deeply troubling in their implications and flawed in their considerations.

In a nutshell, Wiebe and Mullin argue that MAiD can be a ‘harm-reducing’ embrace of individual autonomy to avoid prolonging suffering in oppressed people who cannot access adequate socioeconomic resources. They speak specifically to the application of Bill C-7 MAiD, also known as not-reasonably-foreseeable-natural-death or Track 2, which is for people with chronic physical conditions causing suffering but not death. They argue that even though a person may be poor or have limited options, they can still hold and express autonomy to request and receive death. Death, in their formulation, is the least bad option for people suffering social inequality in an unjust world.
Theirs appears as the latest in a series of recent papers attempting to use autonomy arguments to justify MAiD access under an expanding range of circumstances. Davis and Mathison [2], for example, argue that a person's ‘welfare condition’ is irrelevant to the ‘moral permissibility’ of MAiD. Braun similarly argues for the ‘provision of assisted suicide (but not euthanasia) as justified when it is autonomously requested by a person, irrespective of whether this is in her best interests’ [3].

These are not new arguments.

Thirty years ago, the American murderer Dr MJ ‘Jack’ Kevorkian [4], a euthanasia and assisted suicide advocate and illicit provider, expressed cruder versions of the same positions, claiming that ‘autonomy always, always should be respected, even if it is absolutely contrary, the decision is contrary to best medical advice and what the physician wants…’ and that a mere request for death is justification alone for provision, regardless of circumstance [5]. He rationalised this idea through an instrumental view of life, arguing like Patrick Henry in the American Revolution [6], that death is an acceptable solution to any perceived loss of personal liberty (i.e., oppression).

‘Listen, when you take my liberty away, you've taken away more-something more precious than life. I mean, what good is a life without liberty? Huh? None.’ [7]

‘If you don't have liberty and self-determination, you've got nothing, that's what this is what this country is built on. And this is the ultimate self-determination, when you determine how and when you're going to die when you're suffering.’ [8]

It is also worth noting that Kevorkian disproportionately killed or assisted death for women, many of whom may not have had any physical illness [9] and claimed ‘that only medical men should decide’ on MAiD [7]. Aside from his blatant misogyny, his statements highlight a central but unacknowledged problem in Wiebe and Mullin’s and similar individualised formulations of MAiD: the tension between the patient's autonomy, the clinician's autonomy, and society.

Dying with Dignity, Canada's 43-year-old MAiD lobby group is organised around an autonomy rationale [10,11]. Autonomy likewise appears in the final report of the Canadian parliamentary joint committee on MAiD as part of the package of justifications and recommendations [12]. Current Canadian MAiD providers also frequently cite autonomy rationales that echo Kevorkian, Wiebe and Mullin, and others, suggesting that together with reported cases [13], some assessors and providers may already operationalise such arguments, including senior members of the Canadian Association of MAiD Assessors and Providers [14], who make statements such as:

‘My job is to help them have a good life and a good death by their standards, not by mine or anybody else’s’[15]

‘I believe very, very strongly in patient autonomy, what we call patient centred care…’[16]

Importantly, in Canada, MAiD is 99.9 % euthanasia. Still, the autonomy of the clinicians who decide how to present MAiD to the patient, how to assess the request, and finally, whether to still proceed with lethal injection (or issuing lethal doses of pharmaceuticals for the sporadic self-administration cases) after asking the patient for their final consent, are ignored by Wiebe and Mullin. By enlisting euthanasia, patients might be better said to be surrendering, not embracing, much of their autonomy, indeed their lives, to their assessors and providers. Certainly, there are already published accounts of shackled and guarded prisoners being assessed and euthanised by paired MAID assessors and providers, yet apparently still considered to have enough coercion-free autonomy for death [17].
Providers are not Kevorkian’s Thanatron death machine [18], but human ‘agents ‘ themselves who must have the same autonomy as their patients, albeit with wealth, health, privilege, and decision-making power, including a legal exemption to criminal culpability for murder, that leaves them in a much more advantageous ‘welfare condition’ than Wiebe and Mullin’s impoverished or oppressed requestors. Wiebe and Mullin, however, call it ‘paternalistic’ to prevent people from accessing MAiD but make no comment on the brutal paternalism of a privileged and empowered actor representing the state who judges someone’s eligibility for death and then may kill them. Why is clinician autonomy discounted? The privilege and power of assessors and providers is a major persistently unaddressed flaw in the reasoning of these kinds of patient autonomy-based arguments.
Wiebe and Mullin also attempt to criticise ‘relational autonomy’ perspectives, arguing that restricted options do not limit a person’s autonomy because they can still exercise,

‘the ability to understand, appreciate the consequences of their choice, the capacity to value, the ability to reflect on the values guiding their decision, as well as the attitudes of engaged hope, self-worth and self-trust.’[1]

However, their definition of autonomy appears to be a repackaging of the obsolete ‘homo economicus’ model human actor from neoclassical economic theory, where people are understood to be ‘unswervingly rational, completely selfish, and can effortlessly solve even the most difficult optimization problem’ [19]. However, research in neuroscience, biology, psychology, public health, sociology, and other disciplines has long since established that our relative autonomy and agency are products of myriad internal and external biophysical and social experiences, relationships, circumstances, and systems. None of us exists in hermetic vacuums of rational reason.
Among these relationships are loved ones, friends, and others impacted by a MAiD death, who might also be sources of support otherwise unknown to the assessor. No consideration is given to them, yet it is well established that suicide and homicide (euthanasia is a form of the latter), in addition to MAiD, can lead to diagnosed prolonged grief disorder, trauma, and other health problems in those who knew the deceased or witnessed the death [20–22]. MAiD clinicians, however, are not legally required to seek information from such people (including other healthcare providers) or enlist them to help identify supports that might relieve oppression and improve conditions. Nor are they required to facilitate grief support, even when the patient does not ban them from contacting others. In fact, the recently released but optional Model Practice Standard for MAiD strongly advises assessors to take every step to seek ‘collateral information’ from other sources [23], suggesting this is not routinely happening. However, suppose a MAiD assessor strongly believes in the individual rather than relational autonomy. In that case, they have no ideological reason to seek such information from others or mitigate harm to them through engagement and grief support.
By voiding a person’s relational context, the impact of their death on others, and the autonomy of the people who must assess and approve death from consideration, Wiebe and Mullin and their ideological colleagues idealise patient autonomy. Like Kevorkian, they construct euthanasia or assisted suicide (non-culpable homicide and suicide assistance under Canadian MAiD law [24]) as virtuous though ‘tragic’ expressions of self-determination and ‘harm reduction’. Do they consider the harm to others from MAiD deaths as illegitimate or irrelevant? There is a prospect, for example, of an otherwise healthy person grieving or traumatised by a MAiD death and diagnosed with PTSD or a grief disorder receiving MAiD for such mental illnesses in 2024 when this becomes available. Would such begotten MAiD also be a tragic but laudable act of ‘harm reduction’ because grief is suffering, regardless of its origin?
Finally, Wiebe and Mullin claim that the cases they describe ‘will be few relative to the proportion of patients who can and will access MAiD due to Bill C-7’ (MAiD for disabled people who are not dying). However, according to federal reporting, there were 221 C-7 deaths in 2021 after Bill C-7 became law [25], which is not a ‘few’. Note here that Health Canada reporting obscures this number in a mixed format of a percentage of a fraction (2.2 %/10 064 deaths), so the reader must convert that percentage to get the number of C-7 deaths [25]. Given the significant yearly increases in MAiD deaths, there will likely be more than 221 for 2022 when data become available. Those 221 people were real people with names and authentic lives (not merely dehumanised ‘agents’) and will likely amount to thousands of deaths in a very short time, given the annual increases in deaths we have already seen [25].
Societies that find intellectual ‘reasons’ to euthanise or kill the poor, sick, disabled, or socially oppressed groups commit atrocities. A former MAiD provider has even sounded this alarm in the wake of eligibility expansions [26]. Despite claims that a lack of support for people is a ‘deep injustice’, the vision of society painted by Wiebe and Mullins is dystopian, where injustice may be morally permitted to flourish so long as others with greater autonomy judge oppressed people to have enough autonomy and ‘engaged hope’ to kill themselves or have themselves killed. Indeed, they seem to argue that medically provided suicide-for-oppression is a suitable and just response ‘to a world that currently does not exist and is unlikely to emerge in the near future’. Thus, in addition to MAiD for both chronic and terminal physical illness and disability, and official consideration or arguments for mental illness [27], children (‘mature minors’) [12] and infants [28], we now see Kevorkian’s old argument re-emerge as a new slip on the expansionist slope as an argument for MAiD for people whose sole condition is the experience of forms of deprived liberty. Wiebe and Mullin’s and allied proposals, perhaps unwittingly, thus serve the construction of an intellectual foundation for eliminating rather than emancipating the poor and oppressed by an empowered (medical) elite. MAiD, in this way, is ultimately a political, not a medical, project. We have seen versions of this before and we know how it ends.

References

1 Wiebe K, Mullin A. Choosing death in unjust conditions: hope, autonomy and harm reduction. J Med Ethics 2023;:jme-2022-108871. doi:10.1136/jme-2022-108871
2 Davis J, Mathison E. The Case for an Autonomy-Centred View of Physician-Assisted Death. J Bioethical Inq 2020;17:345–56. doi:10.1007/s11673-020-09977-8
3 Braun E. An autonomy-based approach to assisted suicide: a way to avoid the expressivist objection against assisted dying laws. J Med Ethics 2022;:medethics-2022-108375. doi:10.1136/jme-2022-108375
4 Charatan F. Dr Kevorkian found guilty of second degree murder. Br Med J 1999;318:962.
5 The Kevorkian Verdict. Frontline. 1996.http://www.pbs.org/wgbh/pages/frontline/kevorkian/ (accessed 18 Mar 2023).
6 Henry P. Give Me Liberty Or Give Me Death. 1775.https://avalon.law.yale.edu/18th_century/patrick.asp (accessed 14 May 2023).
7 Lessenberry J. Jack Kevorkian: Defending Assisted Suicide Right Up to the End. Los Angel. Times. 1993.https://www.latimes.com/archives/la-xpm-1993-12-12-op-1235-story.html (accessed 12 May 2023).
8 Kevorkian J. Dr. Jack Kevorkian’s ‘60 Minutes’ interview. 2011.https://www.cbsnews.com/news/dr-jack-kevorkians-60-minutes-interview/ (accessed 12 May 2023).
9 Solomon LM, Noll RC. Physician-assisted suicide and euthanasia: Disproportionate prevalence of women among Kevorkian’s patients. Gend Med 2008;5:110–4. doi:10.1016/j.genm.2008.06.001
10 Dying With Dignity Canada. You searched for autonomy. Dying Dign. Can. https://www.dyingwithdignity.ca/search/autonomy/ (accessed 12 May 2023).
11 Godley E. Patients’ right to die becoming major issue for MDs and MPs. Can Med Assoc J 1992;146:608–10.
12 Garneau M, Martin Y. Medical Assistance in Dying: Choices for Canadians Report of the Special Joint Committee on Medical Assistance in Dying. Ottawa: : Parliament of Canada 2023.
13 Anderssen E. A complicated grief: Living in the aftermath of a family member’s death by MAID. Globe Mail. 2023.https://www.theglobeandmail.com/canada/article-maid-death-family-members... (accessed 20 Mar 2023).
14 Governance – CAMAP. https://camapcanada.ca/about/governance/ (accessed 13 May 2023).
15 The Canadian Press. Dr. Ellen Wiebe: ‘We should all have the right to die at our own choice’. Macleans.ca. 2016.https://macleans.ca/news/canada/dr-ellen-wiebe-we-should-all-have-the-ri... (accessed 18 Mar 2023).
16 Stefanie Green: The ethics of assisted dying. HARDtalk. 2023.https://www.bbc.co.uk/programmes/w3ct32mr (accessed 18 Mar 2023).
17 Driftmier P, Shaw J. Medical Assistance in Dying (MAiD) for Canadian Prisoners: A Case Series of Barriers to Care in Completed MAiD Deaths. Health Equity 2021;5:847–53. doi:10.1089/heq.2021.0117
18 Beschizza R. The Thanatron, Jack Kevorkian’s Death Machine. Wiredhttps://www.wired.com/2007/06/the-thanatron-j/ (accessed 12 May 2023).
19 Levitt SD, List JA. Homo economicus Evolves. Science 2008;319:909–10. doi:10.1126/science.1153640
20 Wagner B, Müller J, Maercker A. Death by request in Switzerland: Posttraumatic stress disorder and complicated grief after witnessing assisted suicide. Eur Psychiatry 2012;27:542–6. doi:10.1016/j.eurpsy.2010.12.003
21 Tal Young I, Iglewicz A, Glorioso D, et al. Suicide bereavement and complicated grief. Dialogues Clin Neurosci 2012;14:177–86. doi:10.31887/DCNS.2012.14.2/iyoung
22 Yan H, Bytautas J, Isenberg SR, et al. Grief and bereavement of family and friends around medical assistance in dying: scoping review. BMJ Support Palliat Care Published Online First: 13 September 2022. doi:10.1136/spcare-2022-003715
23 MAID Practice Standards Task Group. Model Practice Standard for Medical Assistance in Dying (MAID): Regulatory authority for [Physicians/Nurses] of [jurisdiction] Standard of Practice Medical Assistance in Dying (MAID). Health Canada 2023. https://www.canada.ca/en/health-canada/services/medical-assistance-dying...
24 Criminal Code. 1985.
25 Health Canada. Third annual report on Medical Assistance in Dying, 2021. Ottawa: : Government of Canada 2022. https://www.canada.ca/en/health-canada/services/medical-assistance-dying...
26 Gaind KS. Nothing, nowhere, all at once: Canada’s courtship with assisted death. 2023.https://umanitoba.yuja.com/V/Video?v=847548&node=4129787&a=22215896&auto... (accessed 12 May 2023).
27 Health Canada. Final Report of the expert panel on MAiD and mental illness. Ottawa: : Government of Canada 2022.
28 Cullen C, Zabjek A. Federal minister says she’s ‘shocked’ by suggestion of assisted deaths for some babies. CBC News. 2022.https://www.cbc.ca/news/politics/assisted-dying-carla-qualtrough-1.6625412 (accessed 11 Apr 2023).

Wiebe and Mullin argue that autonomous individuals requesting MAiD because of “unjust social circumstances” or “oppression” should receive MAiD as part of a “harm reduction approach.”

To successfully defend this thesis, one would be required to defend a particular understanding of autonomy and harm. As these authors note, these terms are notoriously difficult to define. The authors assert that “acting autonomously…requires hope,” the implication being that a truly hopeless person cannot be meaningfully autonomous. The authors subsequently argue, in seeming contradiction, that “people whose reduced opportunities have led them to lose all hope” are autonomous decision makers. Their attempt to resolve this tension involves asserting that the act of pursuing MAiD is, itself, evidence of “engaged hope.” This runs directly contrary to the witness of patients in these circumstances, who cite despair and hopelessness as their motivation. It is an idiosyncratic and paternalistic (and therefore ironic) understanding of hope that suggests that patients who report a desire for MAiD because of hopelessness are, contrary to their own feelings, hopeful and therefore autonomous.

It may be helpful to think in particulars. In my work as a physician and ethicist in Canada, I have encountered the type of cases that Wiebe and Mullin allude to. In a representative case, a previously able-bodied individual experienced sudden, inexplicable neurological illness that caused significant disability and chronic pain. He was no longer able to work or access his home, and the required mobility supports were initially denied. In this context, the patient requested MAiD, citing the unjust and ableist nature of the system as his sole motivation. He was clear that his ‘higher’ desire was to live; his request to die would be retracted if his circumstances changed. His request for MAiD was not the choosing of a preferred option. He requested MAiD because, in his unjust context, it seemed to be his only choice. He felt as if he had no choice. His circumstances were straightforwardly coercive.

Wiebe and Mullin have said, in this kind of situation, that a physician like myself can (and should) both try to remedy the underlying injustice and also end the life of a patient who, regardless of any autonomy determination, has a higher desire to live. In a particular case, I cannot do both. In this case, his care team chose to advocate for him. He is alive today, grateful to a team that ‘paternalistically’ valued his higher desire and intrinsic value, over a desperate request driven by unjust circumstances. Would Wiebe and Mullin suggest that they harmed him by doing so?

Finally, it is important to address the underlying assumptions that lie beneath Wiebe and Mullin’s understanding of autonomy and harm. Which understanding of anthropology suggests that it is less harmful to end a person’s life rather than to deny a request that is motivated by remediable social injustice? Certainly not the anthropology of Kant or Mill, who are originators of the modern idea of autonomy. Certainly not that of Beauchamp and Childress, who were the first to formulate ‘The Principle of Respect for Personal Autonomy’ as a “prima facie” principle of biomedical ethics (more on this here: https://academic.oup.com/jmp/article/46/3/330/6265006). Certainly not the classical medical view of the person, which defines harm in terms of health. I empathize with the discouragement that the authors express regarding the availability of equitable medical care in Canada. But I do not agree that such a context should lead us to hopelessness, abandoning vulnerable individuals who feel like they have no choice but to die. An ethical society would pursue the good for these individuals. Good medicine would pursue their health.

As a retired palliative care physician, I am puzzled by several aspects of this article. First, authors’ choice of terminology: ‘terminal sedation’ and ‘expanded terminal sedation’. It is more than 20 years since the use of the former began to be discouraged because of perceived ambiguity, and replaced by ‘palliative sedation’ (PS)[1] – as reflected in current professional guidelines.[2] And despite dissenting voices,[3] most clinicians would probably consider ‘expanded terminal sedation’ to be ‘slow euthanasia’.
PS was used to describe a deliberate switch from escalation of symptom management to a deliberate reduction in a patient’s level of consciousness in order to ease otherwise intolerable refractory suffering in ‘imminently dying’ patients. The sedation varied from light to deep depending on individual need. Some guidelines refer to ‘intermittent’ as well as ‘continuous’ sedation. Recently, because of the lack of clarity in many reports, there’s been a trend towards limiting discussion to ‘deep continuous sedation until death’ (CDSUD) – the most contentious aspect of sedation near the end of life.
Second, it may be correct that ‘the Doctrine of Double Effect (DDE) continues to shape much of the ethical and legal literature concerning end-of-life care’ (EOLC), but what about the medical literature? Would it surprise the authors if I say that, when a practicing clinician, I never agonized about ‘double effect’? As they noted, DDE was originally formulated to exonerate someone who, when acting in self-defence, injured an assailant. The principle is universally applicable, not limited to medicine or EOLC. The practice of medicine would be impossible without it: all treatment has an inherent risk and, inevitably, sometimes things will go wrong and result in unintentional harm to a patient. However, to say that DDE can ‘justify’ a specific treatment is incorrect. Treatment is justified by necessity (not by DDE) and, accordingly, should always be proportionate to need – but this does mean it must always be ‘gradual’ and never ‘rapid’.
Doctors are committed to sustaining life when feasible and always seeking to relieve suffering. We cannot stand by and do nothing. Even so, we must work within the broad medical principles of ‘do good; avoid or minimize harm’ (beneficence and non-maleficence) [4]. Thus, I strongly agree with the authors when they say that the relief of suffering is a fundamental goal of EOLC. However, I disagree that some dying patients continue to suffer ‘despite the technical knowledge and ability to pharmacologically relieve suffering’ (my italics). The relief of suffering demands an holistic approach by health carers – embracing the physical, psychological, existential and social dimensions of personhood. Particularly in relation to existential suffering, skilled personalized psychological support is essential [5]. Drugs play only an ancillary role.
Indeed, the fictitious case history suggests that the authors – none of whom is a palliative care specialist – are unaware of the full range of possibilities available to clinicians when caring for a patient with severe unrelenting existential distress. Palliative care doctors generally are reluctant to offer CDSUD for existential suffering alone because (a) it is impossible to be sure that the suffering is refractory (generally it is responsive to holistic treatment [5]), and (b) the estimated prognosis tends to be months rather than days.
However, such patients may well benefit from respite sedation. Thus, for a young woman with end-stage cancer who was finding life intolerable (very similar to the case history in the article), I suggested that, because of her much reduced physical stamina and the stress of her illness, being awake for 16 hours a day was too long to cope with, and recommended that she had an extra dose of ‘night sedation’ immediately after lunch (in her case given as an injection of midazolam). This enabled her to sleep for 3-4 hours and wake refreshed, and able to enjoy her visitors in the evening. However, it was not just the pharmacological intervention which eased her distress: I listened to her and acknowledged her distress, and together with individually tailored psychological support, life was no longer intolerable.
Other centres have used time-limited deep sedation for up to 48 hours (often called ‘intermittent PS’) to provide a prolonged period of sleep and relaxation.[6] Such treatment is not conditional on being ‘imminently dying’ but on need. It is best considered as an optional component of standard symptom management for existential distress.
According to the authors, another reason for failing to relieve suffering at the end of life is that a dying patient may be ineligible for CDSUD because their estimated prognosis was several months. As noted above, it was originally suggested that it should be limited to the ‘imminently dying’. Giving the inevitable uncertainties of clinical practice, this was a necessarily vague term. However, with the introduction of more detailed professional guidelines, the limit was variously set at a few hours to a few days, to 1–2 weeks,[2] and sometimes unspecified (just terminally ill with a limited prognosis in Norway). In the Netherlands, when the Royal Dutch Medical Association produced guidelines with a prognostic limit of two weeks, these were ratified by the Department of Health and became a de facto legal time limit, thereby rigidly restricting clinical practice.
Over the last century, as the ability to cure has increased, medical training has become increasingly ‘biomedical’ (cure-oriented) and less ‘holistic’ (comfort-oriented). The modern standard medical paradigm – evaluate, diagnose, fix – has its limitations. Some problems cannot be fixed. This can lead to feelings of failure and an inclination to withdraw, and death may be seen as the only way to deal with the suffering. Thus, doctors who cannot, when appropriate, switch from a cure to a comfort modus operandi will tend to have an unconscious bias towards CDSUD. Certainly, many (possibly most) doctors find caring for dying patients extremely difficult [7]. As a psychiatrist observed many years ago:
‘Patients tend to be sedated when the carers have reached the limit of their resources and are no longer able to stand the patient’s problems without anxiety, impatience, guilt, anger or despair. Perhaps many of the desperate treatments in medicine can be justified by expediency, but history has the awkward habit of judging some as fashions, more helpful to the therapist than to the patient [8].

Further, there seems to be an increasing tendency for CDSUD to be regarded as a ‘one size fits all’ solution for seemingly intractable distress. In stark contrast is the testimony of one palliative care doctor:
‘Throughout a 40 year career in palliative care, I have never ordered ‘palliative sedation’… The very concept fails to capture my clinical reasoning. I do not manage delirium, shortness of breath and pain with standard treatments and then designate a symptom ‘intractable’, turning to ‘last resort’ therapy for severe cases. I do not shift my clinical goal from symptom relief to ‘sedation’, nor do I pre-determine that unconsciousness is the only means by which symptoms can be relieved [9].’
I can echo these words, as can many other holistic palliative care doctors. Inevitably, some patients become sedated as a secondary effect from the escalation of specific symptom control measures, no doubt deeply at times. However, a deliberate abrupt switch from symptom management to CDSUD is extremely rare in my experience, and almost always relates to uncontrollable hyperactive delirium in someone close to death, not to existential suffering.

In conclusion, I would suggest that there is an urgent need to investigate why, in national studies of all non-sudden deaths at home and in care homes and hospitals, the incidence of CDSUD ranges up to 25%, i.e. 10 or more times higher than that reported by several palliative care services [10]. The results should enable more focused training about EOLC, and lead to a considerable reduction in unrelieved suffering at the end of life.
Robert Twycross, MA, DM, FRCP, FRCR
Emeritus Clinical Reader in Palliative Medicine, University of Oxford
Oxford, UK
Email: rob.twycross@spc.ox.ac.uk

References
1. Broeckaert B, Nunez Olarte JM. Sedation in palliative care: facts and concepts. In: ten Have H, Clarke D, eds. The Ethics of Palliative Care. European Perspectives. Buckingham, UK: Open University Press 2002.166-180.
2. Gurschick L, Mayer DK, Hanson LC. Palliative sedation: an analysis of international guidelines and position statements. Am J Hosp Palliat Care 2015;32:660-71.
3. Cellarius V. ’Early terminal sedation’ is a distinct entity. Bioethics 2011;25(1):46–54.
4. Beauchamp T, Childress J. Principles of Biomedical Ethics (7th edition). New York:: Oxford University Press 2013.
5. Canadian Association of Psychosocial Oncology. Position Statement: Role of Psychosocial Oncology in Medical Assistance in Dying (MAID). Toronto:: CAPO 2017.
6. Morita T. Palliative sedation to relieve psycho-existential suffering of terminally ill cancer patients. J Pain Symptom Manag 2004;28:445–50.
7. Hicks MHR. Physician-assisted suicide: a review of the literature concerning practical and clinical implications for doctors. BMC Fam Pract 2006;7:39. doi:10.1186/1471-2296-7-39
8. Main T. The ailment. Brit J Med Psychol 1957;30:129-45.
9. Scott JF. The case against clinical guidelines for palliative sedation. In: Taboada P, ed. Sedation at the end-of-life: an interdisciplinary approach. Heidelberg:: Springer 2015. 143-59.
10. Vivat B, Twycross R. CSD Continuous Sedation until death; a response to changing practices in the use of continuous sedation at the end of life: a systematic review of the literature (Heijltjes et al., 2020.) J Pain Symptom Manag 63;1:e139-42.