Dignity or discrimination: should dementia patients be able to request assisted suicide in the future?
Assisted dying is a complex and multifaceted issue covering a range of scenarios and implications. Assisted dying may be sought by people for a multitude of reasons, including those suffering from a degenerative disease, to non-somatic illnesses such as depression. Due to its complexity, a general approach to reforming assisted dying is beyond the scope of this article. Instead the focus will be on whether the law on assisted dying in England and Wales is in urgent need of reform allowing those suffering from dementia to request assisted suicide by an advanced directive (AD) when they reach the severe stage of the disease.
This article will look at the Dutch approach where ADs are legal and whether the United Kingdom (UK) should follow this approach. The main problem that arises when considering whether ADs should be allowed for dementia patients is the ‘then versus now’ issue. In other words, should we respect the ‘then-self’s’ autonomy and follow their wish to end their life when they reach the severe stage, or ignore the AD as the ‘now-self’ no longer has the capacity to exercise this decision? Parts one and two of this article will consider the key principles of each argument such as autonomy, dignity, suffering, development and vulnerability as well as their implications.
Ultimately it will be argued that the law should not follow the Dutch approach and allow ADs for dementia patients due to the effect of the disease; the disease eventually results in a lack of capacity to understand the ending of one’s life and therefore, this creates too many risks to justify a reform of this nature.
In the UK assisted suicide is a distinct statutory crime under s.2(1) of the Suicide Act 1961. Assisted suicide is defined as aiding, abetting, counselling or procuring the suicide of another. Therefore, an AD to request a physician to end their life in the severe stage of dementia is illegal.
In the Netherlands however, assisted suicide is legal under The Termination of Life on Request and Assisted Suicide Act, as long as certain criteria are met; essentially that the patient has capacity, is suffering unbearably with no alternative solution and the decision is voluntary. Under s.2(2) of the Act, an AD can be followed. This enables the physician to carry out voluntary assisted euthanasia, in line with the patient’s wishes when competent, where the patient is no longer capable of expressing these.
There are several forms of dementia, including vascular dementia, dementia with Lewy bodies, and Alzheimer’s, but all result in the deterioration of memory, thinking, and the ability to perform everyday activities. Dementia currently affects around 850,000 people in the UK.
There are different stages of the syndrome: from the early stage of forgetfulness and becoming lost in familiar surroundings, to the severe stage where they are completely dependent on others for basic self-care needs, fail to recognise relatives and sometimes have behaviour changes such as increased aggression. This is where the ‘then-versus-now’ concept originates. In the early stages the symptoms are mild and they are deemed to have the capacity to make serious decisions such as those surrounding their end of life. However, in the later stages of the disease, this capacity has almost completely diminished. Subsequently this “now-self” is no longer capable of understanding the nature of an AD.
Part 1: The ‘then-self’
Arguments in support of reforming the law to allow for dementia patients in the early stages to make ADs believe that the wishes of this ‘then-self’ override the wishes of
the ‘now-self’. This side takes a eudaemonist perspective, whereby they prioritise the long-term interests of the person rather than their short-term interests in the final stage. The argument is based on principles of autonomy, dignity and anti-suffering.
Autonomy is one’s right to make crucial decisions about how their life will go for themselves, without interference from the state. Dworkin is the leading scholar in this area. He distinguishes between critical and experiential interests. Critical interests are what make us who we are; these cannot be realised or satisfied through specific experiences, but are values that shape the meaning of our lives. Experientialinterests on the other hand, are short-lived and simplistic. Dworkin argues that due to their lack of capacity, those in the final stages of dementia are only capable of having experiential interests such as hobbies. Therefore, to ignore the then-self’s AD is to violate their autonomy by going against their critical interests which extend beyond memory loss. McMahan also follows this line of reasoning. He justifies the use of ADs on the basis that dementia prevents the internal unity and temporal reach of their psychological relations, they no longer have sentience and conscious awareness, and therefore are ‘barely there at all.’ Respecting the then-self’s wishes is to uphold their autonomy regarding their decision to end their life.
This argument certainly has strength. As DeMarco and LiPuma point out, ADs may be seen as analogous to wills. Their argument is based on the beliefs of philosopher Partridge who insists that we have moral obligations to the dead to respect their autonomy by following their wills. When alive, they were able to outline their wishes beyond their life. The assurance that ADs are an option also provides a measure of control. Out of respect for the then-self’s autonomy we should follow their wish to want to die in the final stage.
However, this line of reasoning seems to be based on the idea that we have a right to autonomy. While this does not seem controversial in relation to exercising one’s will, requiring a physician to end a patient’s life who is no longer of capacity to appreciate this seems to be stretching the concept beyond its boundaries. The autonomy argument is deontological in nature, demanding that one has a right to have their life ended, but this fails to recognise any consequences.
Firstly, this act involves a physician. Although Dworkin does recognise that there is ‘no right to compel a doctor to assist them’ and therefore, this procedure would only be carried out by a willing doctor, he fails to see the consequentialism perspective.
Justifying ADs on the principle of autonomy has serious repercussions for the vulnerable. As Greasley emphasises, it may create a culture where assisted dying in this format is expected. The decision of the ‘then-self’ may not be truly autonomous because they feel pressure from external influences to not be a burden. The individual notion of autonomy is arguably a ‘fallacy’; our decisions are always embedded in a social and emotional context, therefore legalising ADs for assisted dying runs the risk of this becoming a normality. The implication of this is that less money will be invested into care for those who do not exercise this discretion, which seems to be at odds with the principle in respect of the vulnerable person’s autonomy. Consequently, this deontological argument raises too many implications to justify a reform of the law to accept ADs in these circumstances.
Dignity is another key component of the ‘then argument’. It is based on the idea that people prior to the onset of dementia have the right to not be defined by the end stage of dementia where they are no longer competent. DeGrazia argues that we identify with a constituted sense of self-identity. This is intertwined with our values and dependent on our capacity. When we lose our capacity we lose our narrative self. Cantor has similar beliefs, arguing that our cultivated personality is our vision of dignity. Dementia spoils this by causing the loss of these self-identities and personalities. This ending affects the narrative of their whole lives. Essentially, the onset of dementia has a retroactive negative impact on goods that they previously valued.
The loss of dignity is certainly a fear for most when diagnosed with dementia. As previously stated, dementia causes serious deterioration. For example, in the judgment of Zebedee where the victim had been suffering from senile dementia, he could ask the same question 50 times in half-an-hour, did not know where he was and could not do basic things such as go to the bathroom by himself. Therefore, it is clear to see why many do not want the end of their life to be marked by this final stage.
On the contrary, it could be said that the end does not define one’s whole life. Byers argues that just as retrospective significance does not affect the value of the event, the onset of dementia does not therefore undermine the value of what has been. While it is understandable that one would not want their loved ones to see them this way, this does not take away from everything they have done before in their lives. Therefore, the argument for dignity on this basis is not strong enough to warrant a complete reform of the law.
The ‘then argument’ also refers to the harm and suffering that dementia patients endure. The scholars referred to earlier all argued that dementia results in a loss of one’s self. DeMarco and LiPuma take this a step further and argue that the loss of capacity places a patient in a harmful state. They rely on Feinberg’s notion of harm which defines harm as anything that thwarts, sets back or defeats an interest. Therefore, dementia causes harm to individuals because it prevents them from exercising capacity to maintain welfare interests.
According to the Regional Review Committee, dementia meets the Dutch criteria of the patient having to experience ‘unbearable suffering’ due to knowing of the inevitable deterioration of their memory and capabilities. This suffering is visible in many cases, for example a Dutch woman whose AD was followed when she reached the severe stage of dementia, was frequently angry and confused, and often cried.
This premise of the argument is certainly why many people would support a reform of the law. One study found that 60% of the public agreed with physician assisted suicide in these cases, and would prefer to be euthanized. It is clear that sometimes, even with the best person-centred care, many do not feel like a person in society and would rather end their life.
Nevertheless, this argument again leads to implications for the vulnerable. It implies that life with dementia is not worth living, which is illogical. Dementia does not take away the moral status and intrinsic value of a human being. While their capacity does decline, other positive human values remain. As Goering acknowledges, our anticipatory beliefs fail to recognise our ability to adapt to such situations; sometimes the thought is worse than the reality. Albrecht and Devlieger define this as the ‘disability paradox’; the idea that many individuals with disabilities actually have an excellent quality of life when to others this seems undesirable. Thus, although it cannot be denied that some with dementia do suffer, this argument seems to presume the worst when this is not inevitable. Therefore, this impulsive temperament undermines the persuasiveness of this argument to reform the law to allow ADs for dementia patients.
Part 2: The ‘now-self’
Those who are against reforming the law to allow physicians to follow ADs of dementia patients that now lack capacity argue that the now-self’s interests cannot be ignored. Opponents believe that priority should be given to the now-self’s short term interests which have intrinsic value and are not undermined by a lack of capacity. Their argument is grounded on concepts of development and protection of the vulnerable.
Dresser is at the forefront of this argument. She contends that although the now-self often does not have the same capacity and desires as the then-self, this does not
justify ignoring the interests of the person in the severe stage. She argues that although the autonomous chooser is no longer present, they have now developed a new personality with different interests and desires. This is supported by Parfit who argues that our life consists of successive selves, a new self emerges as we age and this desires as much respect and the self-before. Therefore, just because to Dworkin these interests may only be of ‘short-term value’, it does not mean that they should be overridden.
Jaworska is another opponent of this argument but her view differs slightly. She believes that dementia patients are capable of generating new critical interests, including ones about the value of life, and that consequently ADs cannot be justified on the loss of the then-self’s personality because a new one is present and is still credible. Therefore, the overarching theme of this argument is that the now-self’s interests, whether in the form of new critical or experiential interests, both demand respect and should not be interfered with.
It may be asserted that this new personality does not hold the same prestige as the one of the then-self due to the fact they do not have the same level of capacity. Menzel and Steinbock “for instance” maintain that the individual in the later stage no longer has enough of a mind to change the AD, and therefore these interests do not hold the same value. Menzel also argues Jaworska’s statement that the now self is capable of forming new critical ideas does not actually prove anything. It merely provides another definition of critical interests but it does not prove that they have changed their core life values due to the lack of capacity to communicate this.
Nonetheless, this debate only emphasises the fundamental issue of ADs for dementia patients. The disease results in a gradual deterioration of capacity and inability to communicate this. Consequently, it is impossible to truly articulate whether a person with the onset of dementia has genuinely formed a new critical interest or only short-term interests. Rather than presuming, as Menzel does, that they cannot form new life values, the better outcome would be to treat the now-self’s interests with respect and not undermine them because of an AD that states the contrary. For example, in the same way as one would not want to be held to the values espoused in our teens, an AD might not reflect the now-self’s developed values. Therefore, following the AD would be ignorant of the fact that people can adapt and change their minds as they reach the next stage of their life.
The other fundamental component of the opposition to ADs for dementia patients is that the current UK law protects the welfare of the vulnerable. Dresser argues that many who support ADs neglect the concerns of dementia patients. Dementia carries a negative stereotype; people prepare ADs without a good understanding of the quality of life that many experience. Hawkins addresses this in her non-alienness principle of well-being. The principle is that a patient’s best interests are to be determined by what is good for their well-being and has a positive impact on their current experience, for instance, many find enjoyment in new hobbies such as music and form new relationships. Therefore, individuals with dementia that are happy and do not remember their AD should not have this activated as it is not in their best interests.
Many argue that not all dementia patients are happy, as seen in the previously mentioned case of the Dutch woman, and to keep someone alive who feels this way is an odious form of tyranny. Rachels highlights this when he argues that there is a difference between being alive and having a life; for many the focus should be on whether they have a ‘life worth living’ rather than a complete blanket ban on assisted dying.
Nevertheless, this argument raises serious concerns. As Bueno rightly acknowledges, by judging the quality of life we are treating people as objects. The supporters are presenting their argument as one of compassion; however in deciding whether to allow ADs we are considering whether a life with dementia is ‘worth living.’ This is an incredibly dangerous and depersonalising position to take that runs the risk of ending the lives of people who are actually content.
Analysis of the ‘then versus now’ debate has shown the complexity of this issue and the need to balance these competing values. Both have compelling arguments but ultimately there are too many repercussions for vulnerable people who find themselves in these circumstances to justify reforming the law to allow ADs. The fundamental problem is that the disease results in a loss of capacity at the time they would want to exercise their AD, meaning physicians can never be sure if they still share the same values as their then-self.
Middle-ground arguments have also been put forward involving allowing ADs on a sliding-scale, see Menzel. However, these also fail to overcome this hurdle. Even if pain and suffering may be clear in some cases we can never know for certain due to their inability to communicate effectively, and therefore there is always a risk that a vulnerable person’s life will be ended against their wishes.
A further implication of the opponents view might be that banning ADs for those with onset dementia will not prevent assisted dying from occurring. Many may use alternative means which creates other dangers. The reason that the Netherlands legalised ADs in this context was fundamentally to gain control of this. However, even in the Netherlands the ADs are rarely followed. They are only respected when the patient is in the early stages and of capacity, which is before many would want to end their life.
Consequently, the best approach is to keep the ban on ADs that would allow dementia patients to end their lives and not reform the law on assisted dying. This is justified by following Rawl’s maximin rule of picking the best-worse-case outcome. It is better to have a system that protects the interests of the vulnerable who are unable to communicate their desires, than to risk thousands of people being euthanized according to an AD which is contrary to their welfare and ultimately involves ‘attempting to operate in the dark.
 R (Pretty) v Director of Public Prosecutions  UKHL 61,  1 AC 800.
 Lisa Pressly, ‘The troubled 29-year-old helped to die by Dutch doctors.’ (BBC, 9 August 2018) <https://www.bbc.co.uk/news/stories-45117163> accessed 27 March 2020.
 See Emily Jackson and John Keown, Debating Euthanasia (Hart Publishing 2011) 21 Medical Law Review 632.
 Suicide Act 1961, s 2(1).
 Wet Toetsing Levensbeeindiging op verzoek en hulp bij zelfdoding (Wtl) [the Termination of Life on Request and Assisted Suicide (Review Procedures) Act].
 ibid, s 2(1).
 ibid, s 2(2).
 Alzheimer’s Society, ’Facts for the Media’ <h https://www.alzheimers.org.uk/about us/news-and-media/facts-media> accessed 27 March 2020.
 World Health Organisation, ‘Dementia’ (WHO, 19 September 2019) < https://www.who.int/news-room/fact-sheets/detail/dementia> accessed 27 March 2020.
 Philippa Byers, ‘Eudaimonia and well-being: questioning the moral authority of advance directives in dementia’ (2020) Theoretical Medicine and Bioethics <https://doi-org.uoelibrary.idm.oclc.org/10.1007/s11017-020-09517-w> accessed 27 March 2020.
 Menzel (n 13) 325.
 Ronald Dworkin, Life’s Dominion: An Argument About Abortion, Euthanasia and Individual Freedom (Alfred A Knopf Inc 1993).
 Jeff McMahan, The ethics of killing: Problems at the margins of life (New York: Oxford University Press 2002) 494.
 Joseph P Demarco and Samuel H LiPuma, ‘Dementia, Advance Directives, and Discontinuity of Personality’ (2016) 25 Cambridge Quarterly of Healthcare Ethics 674, 682.
 Ernest Partridge, ‘Posthumous Interests and Posthumous Respect’ (1981) 91 Ethics 243, 261.
 Sylvia A Law, ‘Physician-Assisted Death: An Essay on Constitutional Rights and Remedies’ (1996) 55 Maryland Law Review 292, 298-299.
 John Keown, Euthanasia, Ethics and Public Policy: An Argument against Legalisation (CUP 2002) 54.
 Tom Koch, ‘Living Versus Dying “With Dignity”: A New Perspective on the Euthanasia Debate’ (1996) 5 Cambridge Quarterly of Healthcare Ethics 50, 54.
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<https://cyber.harvard.edu/bridge/Philosophy/philbrf.htm> last accessed 27 March 2020.
 Kate Greasley, ‘R(Purdy) v DPP and the Case for Wilful Blindness’ (2010) 30(2) Oxford Journal of Legal Studies 301, 323-324.
 Elizabeth Peel and Rosie Harding, ‘VIII. A Right to ‘Dying Well’ with Dementia? Capacity, ‘Choice’ and Relationality’ (2015) 25 Feminism & Psychology 137, 140.
 Jakov Gather and Jochen Vollmann, ‘Physician-Assisted Suicide of Patients with Dementia. A Medical Ethical Analysis with a Special Focus on Patient Autonomy’ (2013) 36 International Journal of Law and Psychiatry 444, 447.
 David Alvargonzález, ‘Alzheimer’s Disease and Euthanasia’ (2012) 26 Journal of Aging Studies 377, 383.
 David DeGrazia, Human Identity and Bioethics (CUP 2005) 75-76.
 ibid, 83.
 Norman L Cantor, ‘On Avoiding Deep Dementia’ (2018) 48(4) Hastings Center Report 15, 16.
 Byers (n 12).
 Inez D Beaufort and Suszanne van de Vathorst, ‘Dementia and Assisted Suicide and Euthanasia’ (2016) 263 Journal of Neurology 1463, 1465.
 R v Zebedee  EWCA Crim 1428,  1 Cr App R (S) 37 .
 Bonnie Steinbock and Paul T Menzel, ‘Advance Directives for Refusing Life Sustaining Treatment in Dementia’ (2018) 48 Hastings Center Report S75, S76.
 David J Velleman, Beyond Price: Essays on Birth and Death (Open Book Publishers 2015) 153-160.
 Byers (n 12).
 Demarco and LiPuma (n 16) 680.
 Joel Feinberg, The Moral Limits of the Criminal Law, Vol. I: Harm to Others (OUP 1984) 33.
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 Michael Cook, ‘Informed Consent in Netherlands: Euthanasia’, (BioEdge, Nov 12 2011) <http://www.bioedge.org/index.php/bioethics/bioethics_article/9826> accessed 27 March 2020.
 Menzel (n 13) 326.
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Nia Williams, Charlotte Dunford, Alice Knowles and James Warner, ‘Public Attitudes to Life-Sustaining Treatments and Euthanasia in Dementia’ (2007) 22 International Journal of Geriatric Psychiatry 1229.
 Alvargonzález (n 25) 380.
 John Keown, “Voluntary Assisted Dying” in Victoria: the Parliamentary Committee’s Tenuous Case for Legalization’ (2018) 33 Issues in Law & Medicine 1,21.
 Sidney Callaghan, ‘III. A Feminist Case Against Self-Determined Dying in Assisted Suicide and Euthanasia’ (2015) 25 Feminism & Psychology 109, 110.
 Sara Goering, ‘What Makes Suffering “Unbearable and Hopeless”? Advance Directives, Dementia and Disability’ (2007) 7(4) The American Journal of bioethics 62, 62.
 Gary L Albrecht and Patrick J Devlieger, ‘The Disability Paradox: High Quality of Life Against All Odds’ (1999) 48 Social Science & Medicine 977.
 Rebecca Dresser, ‘Advance Directives and Discrimination against People with Dementia’ (2018) 48 Hastings Center Report 26.
 Derek Parfit, Reasons and Persons (OUP 1986).
 Agnieszka Jaworska, ‘Respecting the Margins of Agency: Alzheimer’s Patients and the Capacity to Value’ (1999) 28 Philosophy & Public Affairs 105, 112-114.
 Steinbock and Menzel (n 32) S77.
 Menzel (n 13) 336
 ibid, 335.
 Chris Gastmans, ‘Euthanasia in Persons with Severe Dementia’ in David Jones, Chris Gastmans and Calum MacKellar (eds), Euthanasia and Assisted Suicide: Lessons from Belgium (CUP 2017) 214.
 Dresser (n 45) 27.
 Jennifer Hawkins, ‘Well-Being, the Self and Radical Change’ in Mark Timmons (eds), Oxford Studies in Normative Ethics Volume 9 (OUP 2019).
 Jaworska (n 49) 120.
 Demarco and LiPuma (n 16) 680.
 Dworkin (n 14) 217.
 James Rachels, The end of life (OUP 1986).
 Gustavo Bueno, El sentido de la vida (Pentalfa Ediciones 1996) 212.
Keown (n 43) 21.
 Nancy Rhoden, ‘The Limits of Legal Objectivity’ (1990) 68 NC L Rev 845, 864-865.
 Gastmans (n 53) 213.
 Menzel (n 13) 339-342.
 Eva Elizabeth Bolt and others, ‘Can Physicians Conceive of Performing Euthanasia in Case of Psychiatric Disease, Dementia or Being Tired of Living?’ (2015) 41 Journal of Medical Ethics 592, 596.
 Margaret Pabst Battin, The Least Worst Death: Essays in Bioethics on the End of Life (OUP 1994) 141.
 Beaufort and Van de Vathorst (n 30) 1464.
 See J. Rawls, A Theory of Justice (Revised Edition, Belknap Press: Harvard University, 1999) 102-160.
 Gastmans (n 53) 215.