Dr Gregory K Pike
The vote on Kim Leadbeater’s assisted suicide bill is fast approaching. As is always the case when assisted suicide legislation is introduced, the promise is for strict limits and safeguards to ensure the vulnerable are protected and that only those making a truly voluntary choice will be eligible. Indeed, voluntarism is always portrayed as non-negotiable; only those who are fully competent and ask for either euthanasia or assisted suicide will get it.
But we need to look at the role of Voluntary Assisted Dying (VAD), which comprises euthanasia and assisted suicide, in those countries where it is legal to see how it inevitably leads to including dementia patients, who cannot give consent.
In 1999, Australian anaesthesiologist Brian Pollard observed how readily public discussion about voluntary euthanasia turned to the ‘plight of the senile, elderly people in nursing homes, how their lives are futile, how they, their families and the public purse would all experience great relief from their demise, and particularly singled out for comment are those who are irreversibly mentally incompetent.’ He was disturbed to see how seamlessly the transition could be made from voluntarism to non-voluntarism, how the freedom to choose a ‘good’ death could so easily morph into a choice by someone else for those who could not choose. How voluntary choice, one of the foundational ideas of the euthanasia lobby, could so effortlessly slip away, almost without recognising it had happened.
Right now in Britain it would be easy to dismiss out of hand a discussion about euthanasia and dementia, by claiming that there is no intention to include these patients within Leadbeater’s bill, nor within Liam McArthur’s bill in Scotland. That in places like Australia for example, the various State’s laws simply don’t allow access for dementia patients. That the laws have been carefully crafted to exclude anyone who cannot provide contemporaneous consent. However, contemporaneous consent is not guaranteed in Australian VAD practice[1] and VAD for dementia is already up for discussion in that country.[2] It is simply negligent not to ask why dementia patients are being euthanased in countries with a longer history of VAD when at the outset there appeared to be no intention to include them. It’s a critical question that needs attention. Was there a hidden intention by advocates to at least get VAD through and leave the question of dementia to a later time, or was it just the inevitable consequence of the logic of death as a solution to suffering?
Economic And Social Cost Of Dementia
Dementia is an immense and growing public health issue. In England and Wales in 2022, dementia and Alzheimer’s disease were the leading cause of death, with a higher incidence for females.[3] Currently, it is estimated there are 850,000 people living with dementia in the UK, a figure expected to double by 2040.[4] The impact on the community is huge, with one in three people at some time involved in caring for someone with dementia. The economic cost is currently estimated to be £23 billion per year, a figure expected to treble by 2040 as the population ages and the incidence of dementia climbs.[5] Whatever way one looks at it, anything that could reduce the impact of dementia would reduce the collective suffering of millions, so it is not hard to see why dementia might be spoken of in the same breath as euthanasia, even if for political reasons that would never occur at the first attempt to get VAD legislation through.
However, despite the fact that it has been only eight years since Canada’s Medical Assistance in Dying (MAiD) programme began, VAD for dementia patients is being proposed by a health minister.[6] Apparently, the Canadian health minister thinks MAiD for dementia patients via an advance directive is now a ‘legitimate and fair issue’ to discuss.[7] The province of Quebec already permits it[8] and so a national consultation is soon to take place.
The discussion in Canada is only just beginning, but euthanasia for dementia patients is something Holland and Belgium have been doing for some time.[9],[10] Even though the published evidence is deficient because of poor reporting and the odd way that euthanasia is not properly categorised in the two countries, it is clear that cases have risen considerably.[11] It is also likely that many cases of euthanasia of dementia patients occur in the category ‘ending of life without patient’s explicit request’.[12] These are cases of non-voluntary euthanasia even if they are not called that in Dutch and Belgian reporting.
Sounds Like Murder
While the evidence about euthanasia and dementia may be poorly reported, the willingness of many physicians to euthanase dementia patients is well known. In Canada for example, even though the experience with legal euthanasia is much briefer than in Holland or Belgium, high numbers of physicians would be prepared to euthanase patients with advanced dementia.[13] If there was a written request and dementia was advanced, 45% of physicians supported providing euthanasia. Notably, 14% would still do so even without a written request. When dementia was terminal, these figures rise to 71% and 43% respectively. It should be sobering that 43% of Canadian physicians would be prepared to provide non-voluntary active euthanasia for such dementia patients. That is, directly and intentionally terminating the life of someone who did not request it, which sounds very much like the legal definition of murder. Would doctors in Britain be any different? For caregivers who have much closer contact with patients the figures are even higher. For advanced dementia, 50% support euthanasia without any written request, rising to 72% for terminal dementia patients.[14]
Risk Of Coercion
What is it about dementia that garners such support for euthanasia, especially since it does not represent the archetypal case for euthanasia, which is unbearable pain and suffering? Instead, perhaps for many it represents one of the many examples of a disability which people fear and that no one wants to get. For some it seems a fate worse than death. And yet, VAD is also supposed to be all about autonomy, the freedom to choose death, something that a dementia patient cannot do. Even an advance directive made while competent cannot resolve the question of consent at the time of the lethal injection, and leaves wide open to interpretation the criteria deemed to activate the directive. And then there is the risk of coercion, amongst many other risks.
If dementia is not about intolerable or unbearable pain and suffering, and dementia patients cannot freely choose euthanasia, why is it part of a VAD discussion at all? Is it perhaps because of all disabling conditions, dementia is perceived as losing humanity, that what makes humans truly human gets lost with dementia? That the person is really gone anyway.
Maybe. Or is it something else?
Wasting NHS Resources
Certainly, some high-profile individuals have expressed the view that those with dementia have a ‘duty to die’. For example, Dame Mary Warnock said: ‘If you’re demented, you’re wasting people’s lives – your family’s lives – and you’re wasting the resources of the National Health Services.’[15]
In a similar vein, former Australian Governor General Bill Hayden said the community should be ‘disencumbered … of some unproductive burdens’.[16] He didn’t specifically name dementia patients, but like prominent UK journalist Matthew Parris, who argued pressure should be applied to patients to accept VAD to relieve others of the burden of caring, dementia patients choosing VAD in advance of becoming such a burden fit the bill well.[17]
Eugenics Making A Comeback
These views are strikingly like those popular in the eugenics movement of the early twentieth century and are in keeping with the fact that there has been a long history of association between euthanasia advocacy and the eugenics movement. The link with eugenics seemed to fade in the post-WW2 era for obvious reasons, but maybe it’s making a comeback.
Why Was There A Link At All?
Because the eugenic vision was much broader than selective breeding or other means of reproductive control to ensure good offspring. That was called positive eugenics. But there was also negative eugenics, which sought to cleanse society of undesirable or unproductive burdens.
… euthanasia assists to create a society of the more desirable. The sense of hygiene and purity that has been elemental to eugenics in its various expressions makes euthanasia a sensible contributor to the overall utopian vision. Disgust levelled at aged, broken and ‘worthless’ human life is resolved by ‘cleansing’ with euthanasia.[18]
When Galton, the father of eugenics, made his famous statement, ‘What Nature does blindly, slowly and ruthlessly, man must do providently, quickly and kindly’,[19] the application to euthanasia was chillingly clear. And while the modern euthanasia movement is all about compassion and choice, eugenics remains a powerful subterranean impulse that refuses to die. And as societies become more comfortable with state-sanctioned medical killing, initially only when freely chosen and for intolerable suffering, perhaps that impulse will gain respectability and the envelope will widen, as it already has in some places.
A Choice For The Elite
Finally, what is true for euthanasia for dementia by advance directive is also true for all cases of euthanasia and assisted suicide; the notion of a free choice means very different things to different people. For some the choice is not so free. It is one thing for the academic elites and wealthy to have VAD established as a legitimate medical ‘treatment’, but it is something quite different for those who are less well off, marginalised and vulnerable. The former has access to resources the latter don’t. The well off can get the best medical care available, and their educational attainment and personal circumstances mean they can support themselves and their loved ones in ways the poorer people can only dream of. It may be a choice for the elites but can be a very constrained one, or even no choice at all, for the poor and disenfranchised. Is this why euthanasia advocates in Australia are expending so much energy ensuring VAD is as easily accessible as possible.[20],[21],[22]
Grotesque
The Canadian political commentator and writer, David Moscrop, recently argued that MAiD in Canada had become an ‘ … absurd and disturbing reality …’, and that ‘ … our underfunded and subpar administration of care in Canada has led some up to, and through, the door of assisted death. As things stand, more will follow. It’s grotesque.’[23]
He’s right. VAD is a more appealing option to those with fewer resources, or those vulnerable and unable to receive the care that could make all the difference. In places still without VAD it is easy to claim ‘we will do it better’, but that is just hubris. VAD means unleashing a power that needs containment. Expansion beyond the hard cases is inherent in letting it loose. Death is not so easily satisfied.
Britain is on the brink, and like in so many places before, the leading edge of the debate is all about the hard cases and never about the inevitable expansion to include so many other cases that are not so ‘hard’ at all.
The old adage ‘be careful what you wish for’ could not be more relevant.
[1] Laws in some Australian states permit access to VAD drugs that can be taken at any time and circumstance that the patient chooses. This could be many months or even years later, by which time a person may have lost or have compromised competency. There is therefore no guarantee that the person is consenting or fully aware of what they are doing at the time of drug ingestion.
[2] See for example, White B et al. (2024) Should people with dementia be eligible for voluntary assisted dying? The Conversation Available from: https://www.qut.edu.au/news/realfocus/should-people-with-dementia-be-eligible-for-voluntary-assisted-dying Accessed 12 Nov 2024; and, Komesaroff PA et al. (2024) Should voluntary assisted dying in Victoria be extended to encompass people with dementia? Med J Aust 220(9)452-454.
[3]Office for National Statistics (2024) Deaths registered in England and Wales: 2022. Available from: https://www.ons.gov.uk/peoplepopulationandcommunity/birthsdeathsandmarriages/deaths/bulletins/deathsregistrationsummarytables/2022 Accessed 14 Nov 2024.
[4] Zhubi L (2023) New estimates suggest dementia cases are set to rise – are they reliable? Alzheimer’s Research UK. Available from: https://www.alzheimersresearchuk.org/news/new-estimates-suggest-dementia-cases-are-set-to-rise-are-they-reliable/ Accessed 13 Nov 2024.
[5] NHS England (2024) Dementia. Available from: https://www.england.nhs.uk/mental-health/dementia/ Accessed 13 Nov 2024.
[6] Baxter B (2024) Minister to launch consultations on advanced requests for assisted dying. Town and Country Today Available from:
https://www.townandcountrytoday.com/health/minister-to-launch-consultations-on-advanced-requests-for-assisted-dying-9722699 Accessed 12 Nov 2024.
[7] Ibid.
[8] Schadenberg A (2024) Quebec approved euthanasia by advanced directive (starting October 20, 2024). Euthanasia Prevention Coalition Available from: https://alexschadenberg.blogspot.com/2024/09/quebec-have-approved-euthanasia-by.html?m=1 Accessed 15 Nov 2024.
[9] de Beaufort ID & van de Vathorst S (2016) Dementia and assisted suicide and euthanasia. J Neurol 263:1463–1467.
[10] Bolt EE et al. (2015) Can physicians conceive of performing euthanasia in case of psychiatric disease, dementia or being tired of living? J Med Ethics 41(8):592-598.
[11] de Beaufort ID & van de Vathorst S (2016) Op. Cit.
[12] Chambaere K et al. (2010) Physician-assisted deaths under the euthanasia law in Belgium: a population-based survey. Can Med Assoc J 182(9):895-901.
[13] Bravo G et al. (2018) Quebec physicians’ perspectives on medical aid in dying for incompetent patients with dementia. Canadian J Public Health 109:729–739.
[14] Bravo G et al. (2019) Comparing the attitudes of four groups of stakeholders from Quebec, Canada, toward extending medical aid in dying to incompetent patients with dementia. Int J Geriatr Psychiatry 34:1078–1086.
[15] Warnock Baroness BM (2008) Dementia sufferers may have a “duty to die.” Telegraph. http://www.telegraph.co.uk/news/uknews/2983652/Baroness-Warnock-Dementia-sufferers-may-have-a-duty-to-die.html. Accessed 20 Mar 2020.
[16] Van Gend D (1997) Euthanasia’s “unproductive burdens”. Quadrant 41(1-2):15-17.
[17] Parris M (2024) Ignore the reactionaries who oppose assisted dying. The Spectator, Available from: https://www.spectator.co.uk/article/ignore-the-reactionaries-who-oppose-assisted-dying/ Accessed 9 Apr 2024.
[18] Pike (2010) What Really is eugenics? Bioethics Research Notes 22(4):47-53.
[19] Galton F (1985), Essays in Eugenics, 42.
[20] McDougall R & Pratt B (2020) Too much safety? Safeguards and equal access in the context of voluntary assisted dying legislation. BMC Medical Ethics 21:38.
[21] White BP et al. (2023) Voluntary assisted dying is legal – but some people are unsure how to access it. Australian Centre for Health Law Research, Queensland University of Technology.
[22] White BP et al. (2023a) Commonwealth telehealth ban is an unfair barrier to seeking voluntary assisted dying. Australian Centre for Health Law Research, Queensland University of Technology.
[23] Moscrop D (2024) The Canadian State Is Euthanizing Its Poor and Disabled. Jacobin Available from: https://jacobin.com/2024/05/canada-euthanasia-poor-disabled-health-care Accessed 14 Nov 2024.
