The Liberal Humanist case against assisted suicide.

Alex Schadenberg
Executive Director, Euthanasia Prevention Coalition

Kevin Yuill

The Euthanasia Prevention Coalition has been fortunate to have had Kevin Yuill present at several of our conferences. He recently spoke at an event in Italy. His most recent article: The Liberal Humanist case against assisted suicide was published by Spiked on March 25. Yuill is a professor of American studies at the University of Sunderland (UK).

Yuill begins his article by quoting Baroness Meacher who recently introduced an assisted suicide measure in the House of Lords (UK) that was thankfully defeated. Yuill begins his article by examining Meacher's statement with helping a friend arrange an assisted death in Switzerland:

‘I was motivated purely by compassion. But in the eyes of the law, my acts made me a criminal.’

Yuill responds to Meacher's statement by writing:

Although it looks reasonable and humane, this campaign to legalise assisted dying is anything but. As I will set out below, it is primarily based on fear-mongering; it would undermine the idea of moral equality that regards the killing of an 86-year-old as just as wicked as the killing of a 24-year-old; and rather than liberate the individual, it would destroy his freedom.

Moreover, as the history of the euthanasia movement shows, the undoubtedly genuine compassion of today’s assisted-dying campaigners conceals the disturbing utilitarian and technical view of humanity on which their campaign is ultimately based.

Yuill then deals with the issue of the changing terminology. He first defines euthanasia and assisted suicide, as they have been traditionally understood and then he states:

Indeed, the terminology shifts according to timespan and geography. Little wonder, the terms du jour, ‘assisted dying’ and MAiD become blurrier the closer you look at them. MAiD implies assisted suicide in the United States but in Canada all but a handful of MAiD deaths are euthanasia rather than assisted suicide. The Netherlands, where both euthanasia and assisted suicide are legal, has no qualms about using the term suicide – which is considered offensive in the Anglosphere – in order to distinguish them.

Does the term ‘assisted dying’ help public understanding? No, it doesn’t. In a UK poll conducted in 2021, when asked ‘What do you understand by the term “assisted dying”?’, 42 per cent of Brits polled thought it meant ‘Giving people who are dying the right to stop life-prolonging treatment’ – a right that they already have. When considering that the majority of Brits support the legalisation of ‘assisted dying’, it is useful to remember that much of what they support is already legal.

Yuill then writes about the fear-mongering campaign by the assisted suicide lobby:

The campaign to legalise assisted dying often plays on people’s fears of how they and their relatives might die. Hence a typical campaigning video by Dignity in Dying, a leading UK-based assisted-dying campaign doctor to make it stop. He or she will be surrounded by relatives, who tearfully plead with hospital staff to end it. Many watching such short films will recall the death of a loved one and are genuinely horrified at the prospect that anyone else should have to suffer like that.

But how true is this scenario? Not very. In 2019, the CEO of Hospice UK, a charity that works with those experiencing death, dying and bereavement, publicly chastised Dignity in Dying for the ‘sensationalist and inaccurate’ portrayal of death in a video to accompany its ‘The Inescapable Truth’ campaign.

Dignity in Dying eventually removed that particular video but it is persisting with its scare tactics. It continues to claim that 17 people will suffer as they die every day. What it does not say is that an estimated 1,700 people die every day in the UK. That means, according to Dignity in Dying’s own statistics, that less than one per cent of the population will suffer as they die.

Yuill acknowledges that the assisted suicide lobby sells a limited form of assisted suicide in order to gain support for legalization. But he examines the question of a life that is not worth living.

The charity, Humanists UK, however, argues that ‘we do not think that there is a strong moral case to limit assistance to terminally ill people alone…’. And campaign group My Death, My Decision also rejects restricting assisted suicide to the terminally ill. Yet even these organisations refrain from campaigning for the right of all competent adults who want to die to be assisted in their suicides. They just draw different lines between those whose lives are worth living and those whose are not.

Moreover, virtually all assisted-dying advocates argue that doctors should ultimately be in charge of the process of deciding who is entitled to an assisted death. Even in Switzerland, where assisting a suicide is legal so long as there is no monetary interest involved, doctors are expected to facilitate suicides.

This is a serious problem. The decision as to whose life is no longer deemed worth living effectively rests with medical authorities or other representatives of the state. It is up to them to decide who should live and who should die.

Yuill then examines the dark history of euthanasia in the twentieth century.

Only in the early part of the 20th century did euthanasia proper come to the fore. In the United States, France, Great Britain and Germany, there were several unsuccessful attempts to legalise euthanasia. This pro-euthanasia campaign emerged against a political background increasingly dominated by eugenics. While ‘Social Darwinism’ implied that the fittest would survive if nature weeded out society’s losers, eugenics favoured active intervention to assist natural selection. As the German zoologist Robby Kossmann put it at the end of the 19th century, the state ‘must reach an even higher state of perfection, if the possibility exists in it, through the destruction of the less well-endowed individual… The state only has an interest in preserving the more excellent life at the expense of the less excellent.’

He then writes about the German euthanasia movement.

In 1920 Karl Binding and Alfred Hoche published the pamphlet, Permitting the Destruction of Life Unworthy of Living. They argued that ‘there are indeed human lives in whose continued preservation all rational interest has permanently vanished’. Psychiatrist and neurologist Robert Gaupp – remembered for his principled defence of a man with Jewish associations in opposition to the Nuremberg Laws in 1935 – was referring to mentally disabled people when he said that it was time to remove ‘the burden of the parasites’

Such views reached their grim culmination in the Nazis’ infamous T4 Aktion programme – an involuntary euthasia project responsible for an estimated 300,000 deaths of mentally and physically disabled patients between 1939 and 1945. Of course, no one should infer that these brutal killers bear any relation to today’s assisted-dying campaigners – who are, in general, sincerely compassionate in their motivations. But nor should we view the T4 Aktion programme as entirely distinct from the wider euthanasia movement.

Yuill explains that the Germans weren't the only ones promoting eugenic euthanasia.

In the US, supporters of euthanasia were equally vocal. ‘Our puny sentimentalism has caused us to forget that a human life is sacred only when it may be of some use to itself and to the world’, said the famous deaf, dumb and blind woman, Helen Keller. In the early years of the 20th century, Dr Ella K Dearborn cheerfully called for ‘euthanasia for the incurably ill, insane, criminals and degenerates’. And in the UK in 1931, Sir James Purves-Stewart, a physician at Westminster Hospital and future member of the Voluntary Euthanasia Legislation Society – the forerunner of Dignity in Dying – called on his countrymen to give euthanasia ‘most serious consideration’ because of ‘a grave menace to the future of the state’ and ‘race’. Another prominent ELS member, the psychiatrist and eugenicist, AF Tredgold, told the British Medical Journal that euthanasia should ‘also be extended to include incurable low-grade defectives. It is true that these would be incapable of consent, but their inclusion would appear to be a logical sequence of the proposal.’

Yuill explains that euthanasia lost its appeal with knowledge of the Nazi euthanasia program. He explains that assisted suicide, as a concept, was not debated until the 1980's. Yuill continues:

Today, of course, the campaign for assisted dying is very different to that for euthanasia before the Second World War. But some of the same utilitarian concerns about certain people being a burden and a drain on resources persist just below the surface of today’s assisted-dying discourse. For example, in the Netherlands, where euthanasia and assisted suicide have been legal since 2001, mainstream political parties have expressed support for the Completed Life Initiative. Based on a 2010 campaign that boasted 117,000 supporters, the CLI promises euthanasia for those over the age of 74 who are ‘tired of life’. That this age group is also deemed the least productive in society should worry us all.

Then there is the widespread use of quality-adjusted life years (QALYs), a measure of a person’s ability to carry out daily activities, free from pain and mental disturbance. This measure allows states to rationalise resources, especially medical resources, according to the ‘quality’ of the years a person might have left. Proponents of assisted suicide often employ QALY measurements to assert that the lives of people with certain conditions are not worth living. As two researchers argue, ‘denying access to assisted dying means that patients remain alive (against their wishes), and this can often necessitate considerable consumption of resources’

Legalising assisted dying should not be regarded as a simple step to bring relief to a very few. It is a huge step that will lead to some people’s lives – on physical, or sometimes mental grounds – being deemed not worth living. That is a dire and dangerous situation. There is wisdom yet in the famous old Christian precept, thou shalt not kill.

Previous articles connected to Kevin Yuill (Link).

Assisted suicide deaths are not what you think they are.

Alex Schadenberg
Executive Director, Euthanasia Prevention Coalition

David Rose, writing for the Daily Mail UK published an article on October 21 titled: Why an 'assisted death is almost certainly not what you think it is. Stories about how assisted suicide deaths actually occur are rarely published. Recently researcher Dr Joel Zivot has challenged how deaths by assisted suicide actually occur in his article - Assisted Suicide is neither painless nor dignified.

Rose states that assisted suicide deaths will often take many hours. Rose writes about the death of Colorado resident Kurt Huschle who died by assisted suicide in July 2017. Rose writes:

On the morning of July 16, a nurse arrived at their home and checked that Kurt stood by his decision. By noon, he was ready to go. Following the directions given, Susan mixed the contents of two small bottles into a bigger one and gave it to Kurt.

She had expected him to drink the drug cocktail, share a last hug, then pass away peacefully.

Instead, as Susan later told the Denver Post newspaper: ‘With every sip he’s choking and coughing, choking and coughing.’

After 20 minutes, she said, he began to gasp unevenly. He seemed to have lost consciousness. But more than four hours after he took the drugs, he was still alive.

Scared and upset, Susan called a doctor and asked for help. It was then the thought struck her that, like many dying patients, Kurt might still be partly conscious and able to hear her.

At 8.15pm, more than eight hours after Kurt took the drugs, he sat up in bed, retched and finally stopped breathing.

Susan said she still believed it was right to help him die. But it had not been a peaceful farewell and they had not been able to say goodbye as she had wanted.

The Oregon 2019 assisted suicide report states that the time of death ranged from 1 minute to 47 hours but the report didn't indicate how many people died more than 90 minutes after taking the lethal drugs.

Assisted suicide drug experimentation.

Assisted suicide activists have been experimenting for several years with lethal assisted suicide drug cocktail experiments to find a cheaper way to cause death. 

An article by Lisa Krieger published by the Medical Xpress on September 8, 2020 uncovers information about the lethal drug experiments:

A little-known secret, not publicized by advocates of aid-in-dying, was that while most deaths were speedy, others were very slow. Some patients lingered for six or nine hours; a few, more than three days. No one knew why, or what needed to change.

"The public thinks that you take a pill and you're done," said Dr. Gary Pasternak, chief medical officer of Mission Hospice in San Mateo. "But it's more complicated than that."

An article published in USA Today in February 2017 examined the experiments  being done on people to find a cheaper lethal drug cocktail for assisted suicide. The article states that assisted suicide researchers are promoting new generations of lethal drug cocktails. The results of the first two lethal drug cocktails were:

The (first) turned out to be too harsh, burning patients’ mouths and throats, causing some to scream in pain. The second drug mix, used 67 times, has led to deaths that stretched out hours in some patients — and up to 31 hours in one case.

The 2020 Oregon report emphasizes the use of the fourth generation of lethal drug cocktails show that the length of time to die has reduced but the problems with the use of these lethal drug cocktails continue.

 

Link to video by Dr William Toffler of Oregon on this topic (Link).

The complexity of addressing mental health and capacity

Note: This article is written by Liz Sayce. The British House of Lords will be debating the assisted dying bill on October 22, sponsored by Baroness Meacher.

The Meacher Bill - The complexity of addressing mental capacity and mental ill-health

The Bill and its safeguards

Liz Sayce

The Bill states clearly that before assistance to die could occur the High Court (Family Division) would need to be satisfied that a person seeking assistance to die has the mental capacity to make that decision.

The attending doctor and independent doctor involved would need to be similarly satisfied of the person’s mental capacity. If they have doubt, they must refer the person for assessment to a specialist (any registered psychiatrist^[1]) and take account of any opinion given.

The Bill also states that the Secretary of State may issue Codes of Practice on issues including assessment of mental capacity; and taking account of depression and other psychological disorders that may impair a person’s decision-making (2 distinct topics, in one or more Codes).

On the face of it these sound like sensible safeguards; but they raise significant questions, some practical, some much more fundamental.

The fundamental challenge of providing safeguards linked to depression and other mental health challenges in the context of assessing capacity

The interaction between mental health challenges (‘psychological disorders’) and mental capacity is complex. Wesseley’s recent review of the Mental Health Act[2] attempted to address its complex relationship with the Mental Capacity Act but there remain unresolved issues.

Assessing capacity in someone with both terminal illness and depression is not straightforward. Depression is common amongst people who are terminally ill: indeed a diagnosis of terminal illness is the kind of major loss that can trigger depression. A desire for suicide is a major symptom of depression, but it may also be a well-thought-through response to impending death. Weir argues that it is very hard to distinguish between the two^[3]. The person may be motivated by a combination of the two, in which case, how does the assessor decide whether the person’s desire to die is coloured more by depression or more by their rational response to terminal illness? And how do assessors across the country do so consistently?

In addition, depression tends to fluctuate, which presents both challenges in assessing what is truly the person’s ‘settled will’ - and opportunities to support people through their times of despair: with treatment and support, the wish to die can be ameliorated even if the prognosis is short[4]. Price et al (2014)[5] summarise the research evidence as follows:

Depression is common in palliative care[6] and desire for hastened death is strongly associated with depression in palliative populations[7]. In Oregon it has been shown that depression is not always appropriately identified in patients requesting assisted suicide[8]. There is evidence to suggest that treatment of depression can reduce the wish for hastened death[9]

Even if the wish to die is coloured by depression, it is perfectly possible that she or he would still be assessed as having the capacity (depending on the definition used – see discussion below). Many people experiencing depression or other mental health challenges meet the ‘capacity’ criteria of the Mental Capacity Act: they are quite able to understand information, weigh up options and communicate a decision on life issues large and small.

It is not straightforward to remove autonomy just because someone has depression; indeed it could be a case of disability discrimination if someone with depression, with capacity, were denied a ‘treatment’ option just because of their impairment (depression). If, as seems likely, large numbers of people with mental health challenges would be considered to have the capacity, then the apparent safeguard for people with depression rather melts away.

It is also not clear that the attending independent doctors would always refer effectively for a capacity assessment. The Royal College of Psychiatrists pointed out that many doctors do not know how to assess for the presence of depression in people who are terminally ill[10].

The (potential) Code topic of ‘taking account of depression and other psychological disorders that may impair a person’s decision-making may sound like a safeguard that is additional to the (separately listed) safeguard of assuring that the person has mental capacity. However, the legal question (as laid out in this Bill) is simply whether the person has the capacity to make this major decision. Therefore the ‘depression’ safeguard appears to be a subset of the ‘capacity’ safeguard - in effect a reminder to think about the impact of psychological disorders (alongside learning disability, dementia or other potential sources of incapacity) when assessing mental capacity to decide.

This would face mental health services and voluntary sector partners with a challenge. Should they sustain their long-standing commitment to prevent suicide amongst people experiencing mental health problems wherever possible, driven by a national policy agenda that has set targets for suicide reduction and ensured that every local area has an all-age multi-agency suicide prevention plan in place? ^[11] Should multiple agencies always start by reaching out to people who are seeking to die, listening, valuing them, supporting them to want to live? Or should they accept that for the sub-set of people with mental health problems who also have a terminal illness, the one question is whether they have the capacity to decide and have made a decision – in which case, would they ditch the whole approach to suicide prevention in favour of autonomy?

This dilemma brings into sharp focus some of the well-known contradictions between Mental Health and Mental Capacity Law. Under Mental Health law, someone who DOES have the capacity to make decisions can nonetheless be detained and treated against their will if they have a mental disorder and certain risk criteria are met. It seems possible that under this Bill someone could be given psychiatric treatment against their will – ie denied autonomy – but nonetheless have the right to assistance to die as long as they met the definition of mental capacity.

Much depends on how mental capacity is defined and assessed. Price et al[12] note that where the ‘bar’ is set – on a continuum from a basic cognitive capability through to a full understanding of context and implications – has not been settled in jurisdictions with assisted dying legislation. Different clinicians set the bar at different points, influenced by factors including their own values. In a survey of US forensic psychiatrists, those with ethical objections to assisted suicide recommended higher thresholds for competence and a more extensive review of the decision [13]. The Mental Capacity Act requires that clinicians first assume capacity and have to demonstrate a LACK of capacity to act in someone’s best interests. The Mental Capacity Act does not provide a clear framework for deciding whether someone DOES have the capacity to make the major life and death decision of assisted suicide.

The Bill does not begin to address these dilemmas. It may gently imply that taking account of depression will offer safeguards, but these would risk being paternalistic if they applied to people with capacity (however defined). As drafted they may turn out to be a chimaera.

In addition, there may be a question about whether some mental health problems ARE terminal illnesses. Someone with advanced anorexia, for instance, maybe very reasonably expected to die within 6 months. Treatment options may have been exhausted. She or he might or might not have the mental capacity to decide – but if they did, is there any reason they should not be assisted to die? The same could potentially apply to someone with severe depression who has not responded to treatment and makes repeated suicide attempts. In a climate of commitment to ‘parity of esteem between mental and physical ill-health, a non-discriminatory case could be made for accepting some people with mental health problems (and no other terminal illness) for assisted dying.

Finally, the Bill suggests another potential Code topic, on the information on treatment, support and end of life care that would be made available to the person. There is no requirement for actual availability of mental health support or end of life care – just a potential requirement to inform people of what does exist. This is a weak safeguard for people with mental health challenges in a context in which there are huge gaps and delays in getting mental health support: the Mental Health Foundation, for instance, estimates that 85% of over-50s with depression receive no help at all from the NHS^[14]. There are also of course no guarantees in the Bill of support with social isolation, financial challenges or inappropriate housing. These social determinants make mental health challenges (including suicidal depression) more likely in the first place; and once people have mental health problems, such social problems tend to intensify, in a vicious cycle^[15]. Surveys by the CQC of the experience of people receiving community mental health support consistently find that over 40% report that they would have liked support with finance, benefits and employment but did not get them^[16]. It would be quite possible for people to develop depression in the context of major social problems, subsequently, become terminally ill, get no support with their isolation and poverty and opt to die while the opportunity to intervene with multi-faceted support went unaddressed.

Specific points

On mental capacity assessments, the attendant and independent doctors must seek an opinion from a registered psychiatrist if there is any doubt about the person’s capacity. It is not clear, though, that every registered psychiatrist has the necessary assessment skills: many psychiatrists are much more familiar with assessing criteria for detention or treatment under the Mental Health Act (which do not include the mental capacity to make decisions) than criteria under the Mental Capacity Act. This increases the risk of inconsistent assessments of capacity. Assessing capacity amongst people with learning disabilities and autistic people has been found, in the Netherlands, to be inconsistent between clinicians and to be influenced by views of disabled people’s lives[17].

Secondly, we know that existing Codes of Practice are not implemented with sufficient effectiveness in relation to people with mental health challenges: the CQC’s 2019 evaluation of compliance with the Code under the Mental Health Act 1983 notes ‘particular areas of concern where we found that the guiding principles were not being routinely implemented to inform practice in the way they should. This was true in fundamental areas such as using the least restrictive approach and involving patients in their own care^[18]. ‘Through our review, we have not found evidence that the Code has prompted a substantial change in the way services are empowering and involving people in their care. These are deep-rooted problems of culture and practice and we cannot assume that provision of one or more Codes on assisted dying would be sufficient to ensure that real engagement would take place with people with mental health challenges at a time when they were facing major decisions about their life and death. Similarly, the post-legislative review of the Mental Capacity Act found that the Act was not being implemented in the way intended and that the duties imposed by the Act were not widely followed.[19]

Conclusion

Parliament should think very carefully about these complexities rather than being reassured by potential Codes and safeguards that seem to melt away as they are examined. Ambiguities and complexities leave doors open to subsequent legal interpretation, challenge and legislative amendment that could expand the remit of this Bill and erode the apparent (but often flimsy) safeguards. There is a tension between the equality of disabled people and safeguards that has not been grappled with in this Bill. If there is an assumption that the presence of depression or other mental health challenges means someone should be denied autonomy, that flies in the face of the Mental Capacity Act and the equality of disabled people. If that is not the assumption, then the safeguards are very narrowly delimited, the Bill seems to drive a coach and horses through the mental health policy objective of suicide prevention and there may be risks of following countries like Belgium in making assisted dying increasingly available to people with mental health problems, and the Netherlands, where people with a learning disability and autistic people are being offered euthanasia by doctors who are unable to make consistent, competent capacity assessments[20].

People living with mental health challenges, learning disabilities, dementia and other cognitive impairments should be at the heart of a deeper discussion about assisted dying than has informed this Bill to date.

Liz Sayce. October 2021

This note is written in a personal capacity and does not reflect the views of any organization. 

Liz Sayce chaired the Commission for Equality in Mental Health, hosted by the Centre for Mental Health, 2019-21. She is a Visiting Senior Fellow at the London School of Economics and was Chief Executive of Disability Rights UK (and its legacy charity Radar) from 2007-2017, where she led work for equal participation for all, through programmes on independent living, career opportunities and shifts in cultural attitudes and behaviour. Liz is a Trustee of ADD (Action on Disability and Development), Vice-Chair of the Social Security Advisory Committee and a member of the Disability Advisory Committee of the Equality and Human Rights Commission. She has been a Non-Executive Director of the Care Quality Commission and a member of the Healthwatch England Committee. With a background in mental health and disability policy, previous roles include Director of Policy and Communications at the Disability Rights Commission and Policy Director of Mind. She led an Independent Review into disability employment programmes for Government in 2011 and has published widely on mental health, disability and social participation. She undertook a Harkness Fellowship in the USA resulting in a book (From Psychiatric Patient to Citizen, 2000 – updated in 2016).

 

^[1] A doctor ‘registered in the specialty of psychiatry in the Special Register kept by the General Medical Council’ according to the Bill

[2] https://www.gov.uk/government/...

^[3] https://www.apa.org/monitor/20...

[4] Royal College of Psychiatrists Presidents’ Blog: Assisted suicide for the terminally ill 26/7/2014

[5] Price et al.: Concepts of mental capacity for patients requesting assisted suicide: a qualitative analysis of expert evidence presented to the Commission on Assisted Dying. BMC Medical Ethics 2014 15:32. doi:10.1186/1472-6939-15-32

[6] Rayner L, Lee W, Price A, Monroe B, Sykes N, Hansford P, Higginson IJ, Hotopf M: The clinical epidemiology of depression in palliative care and the predictive value of somatic symptoms: cross-sectional survey with four-week follow-up. Palliat Med 2011, 25(3):229–241

[7] Price A, Lee W, Goodwin L, Rayner L, Humphreys R, Hansford P, Sykes N, Monroe B, Higginson IJ, Hotopf M: Prevalence, course and associations of desire for hastened death in a UK palliative population: a cross-sectional study. BMJ Support Palliat Care 2011, 1:140–148

[8] Ganzini L, Goy ER, Dobscha SK: Prevalence of depression and anxiety in patients requesting physicians' aid in dying: cross sectional survey. BMJ 2008, 337:a1682

[9] Breitbart W, Rosenfeld B, Pessin H, Kaim M, Funesti-Esch J, Galietta M, Nelson CJ, Brescia R: Depression, hopelessness, and desire for hastened death in terminally ill patients with cancer. JAMA 2000, 284(22):2907–2911

[10] ODOC BMA Briefing.pdf

^[11] https://assets.publishing.serv...

[12] Op cit

[13] Ganzini L, Leong GB, Fenn DS, Silva JA, Weinstock R: Evaluation of competence to consent to assisted suicide: views of forensic psychiatrists. Am J Psychiatry 2000, 157(4):595–600

^[14] https://www.mentalhealth.org.u...

^[15] Sayce L (2016) From Psychiatric Patient to Citizen Revisited. Palgrave

^[16] https://www.cqc.org.uk/publica...

[17] Tuffrey-Wijne I, Curfs L, Finlay I, Hollins S (2018) 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 Medical Ethics 19:17; and Tuffrey-Wijne I, Curfs L, Finlay I, Hollins S. (2019) “Because of his intellectual disability, he couldn’t cope.” Is euthanasia the answer? Journal of Policy and Practice in Intellectual Disabilities 16 (2), 113-116

^[18] https://www.cqc.org.uk/sites/d...

[19] House of Lords - Mental Capacity Act 2005: post-legislative scrutiny - Select Committee on the Mental Capacity Act 2005 (parliament.uk)

[20] Tuffrey-Wijne e al op cit