Dementia, Medically Assisted Rational Suicide [MARS] and voluntary euthanasia
pp 162 – 174
Chapter from: “I’ll See Myself Out, Thank You”. Edited by Colin Brewer and Michael Irwin. Skyscraper Books. UK.
Published Jan 2015
This section will focus particularly on what we may call ‘preventive’ or ‘anticipatory’ deliverance. With most other conditions where the patient may consider MARS, he or she is likely to remain in control of the final decision (including the decision not to invoke it) at all times unless or until death occurs naturally. In most cases, mental capacity will not be in question unless a delirious state develops due, for example, to a high fever or serious metabolic disturbance. Even then, unless it is truly terminal, delirium of this type often responds to treatment, thus preserving or restoring mental capacity. With dementia, the patient does not remain in control, because once dementia reaches a certain stage, mental capacity will be lost and therefore MARS, as we have defined it, may not be a legal or practical possibility. Although Dutch law and practice permit voluntary euthanasia for dementia in the absence of mental capacity if a mentally competent patient has clearly asked well in advance to have euthanasia once that capacity has been lost, such requests are rarely acted on. Here are two stories that illustrate both how British citizens typically view late stage dementia and some of the practical problems it throws up for health professionals. For as Baroness Warnock noted in Chapter 5, ‘The most intractable problem of all those that we must face when considering the death of the old ... is, of course, the problem of dementia.’
In the early 1980s, I worked for two half-days a week as the psychiatric advisor to an NHS clinic for sexually- transmitted diseases. It soon became clear that there was
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very little need for my psychiatric expertise and so once I had taught the staff some basic psychiatry and interview skills, I started doing my share of ordinary venereology, having had experience of the specialty as a junior ship’s surgeon on large cruise liners.
Because I often saw half a dozen patients every hour (some just needed follow-up laboratory tests after successful treatment) it occurred to me that I could easily carry out simple and informal patient surveys just to satisfy my curiosity. In those days, it was not thought necessary to submit such proposals to ethical committees or NHS bureaucrats and for one of the surveys, I decided to ask about the sort of care my patients would want if they ever became severely demented. Nobody ever asked: ‘What is dementia?’ The qualifier ‘Alzheimer’s’ was not so widely used then but everybody knew that dementia meant the progressive and permanent loss of memory and the gradual destruction of the personality – ‘identity annihilation’, as some commentators have called it. In those days, there were fewer old people’s homes but the large mental hospitals still existed and most of them had dementia wards where people with advanced dementia were nursed until they died. Several of my patients had personal experience of dementia in their family.
‘If you were ever admitted to such a ward’, I asked my initially surprised but always cooperative interviewees, ‘I am interested to know how you would want to be treated. Please choose from one of three options.’ The first was: ‘I would like Matron to put something into my tea to end my life as soon as possible.’ The second was: ‘The Matron option is a bit too radical but at the first sign of pneumonia or other life-threatening illness, I very definitely don’t want to be
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treated and hope I will be heavily sedated to help me to die.’ Option three was: ‘I would like to be treated just like any other patient and be resuscitated if I have a serious illness.’ None of them chose option three. They were about equally divided between options one and two.
The other story involves a visit to a private psychiatric hospital in rural Kent, whose owners were trying to persuade me to admit my patients there. I never did, because it was geographically very inconvenient but I wanted to see its interesting architecture, which included a neo-Gothic folly and an art nouveau villa that housed the alcoholism unit. The villa had originally been built for a mad Egyptian royal and his servants, since he was too grand to mix with ordinary bourgeois schizophrenics. On one of the general wards, an elderly man in a neat suit and tie was energetically pacing the corridors and muttering to himself. My surmise that he had Alzheimer’s disease was quickly confirmed, with the additional information that he had been a well-known academic psychiatrist and the co-author of a respected textbook. I remember thinking what a sad and ironic end for a psychiatrist and how he would probably – like my venereal patients – have hated his life to be prolonged. However, I also reflected that even if he had specifically asked in advance for something to be put into his tea, it might in practice be difficult to do so, even if it were legal. It could be terrifying for a confused old man to be reminded of his previous request and told that the time had now come. That may partly explain its rarity in the Netherlands.
‘Elderly care physicians and relatives were found to be reluctant to adhere to advance directives for euthanasia. Not being able to engage in meaningful communication
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played a crucial role in this reluctance.’1 The kindest way to honour such a request would probably be to slip something into a routine cup of tea without any announcement but bureaucrats are not the only people who don’t like that sort of thing. Nevertheless, despite the major ethical and practical considerations, there seems to be a growing feeling in the Netherlands – and doubtless elsewhere – that dementia should be added to the list of conditions for which MARS (and in this particular situation, VE) is a rational and medically acceptable option for those who want it. Significantly, the title of a recent Dutch paper about this debate is: ‘Would we rather lose our life than our self?’2
Alzheimer’s is bad enough but it is not the worst of the dementias. That distinction probably belongs to Huntington’s Disease (HD – sometimes called Huntington’s Chorea). HD is a hereditary dementia with 50% of offspring being at risk. It doesn’t usually appear until after the sufferer has produced children but there are now diagnostic and predictive tests for people and embryos at risk. Many potential sufferers prefer not to know their diagnosis but of those who do want to know the genetic status of their potential offspring – normally-conceived foetuses or embryos created in vitro so that the affected ones can be identified before implantation – nearly all want those that carry the disease to be aborted or not to be implanted.
That is not because – as with abortion for Down’s syndrome – prospective parents fear that the offspring would prove to be difficult or challenging children with limited intellectual ability. HD can occasionally start causing problems during adolescence but most sufferers show no signs of disease until well after they have flown the nest.
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Indeed, during their adolescence, it is their affected father or mother who is likely to start causing problems or become overtly demented. What makes HD even nastier than Alzheimer’s disease (apart from the strong hereditary element) is its very slow onset and prolonged course, death typically occurring in the 50s or 60s some 20 years after the first signs. Furthermore, it is accompanied by progressively more severe twitching and writhing (‘chorea’ shares the same Greek root as ‘choreography’) so that patients are not just demented but distressing to look at, especially for their offspring who know or fear that the same terrifying fate may befall them. In the circumstances, it is not surprising that there is a significantly increased incidence of unassisted suicide in identified HD patients, usually when the disease is at a relatively early stage.3 The reasons for suicide presumably vary but a desire to avoid reaching the advanced stage of HD must surely be prominent.
Without being dishonest or dismissive about the realities of the condition, it is not obvious to me how a therapist or counsellor might effectively dissuade someone carrying the Huntington gene who, having seen the future, wants very much to avoid being there when it happens. Yet the end-stage of HD is not very different from end-stage Alzheimer’s and some cases of Alzheimer’s progress almost as slowly as HD usually does. Some dementia sufferers may hope for a breakthrough in treatment but one can hardly criticise those who don’t want to take the risk that any breakthrough may not come in time to save them. In any case, a very recent review does not give many grounds for optimism. ‘Relatively few clinical trials are undertaken for [Alzheimer] therapeutics, considering the magnitude of the problem.
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The success rate for advancing from one phase [of development] to another is low, and the number of compounds progressing to regulatory review [i.e. near to being licensed] is among the lowest found in any therapeutic area’.4 Dr Rodney Syme’s description in Chapter 5 holds for dementia of all kinds. ‘[It] is characterized by what I have described as the ‘infantile triad’ – incontinence of bowel and bladder, inability to communicate and being spoon fed – to which I now realize I should add immobility and total dependence. Shakespeare described this as the seventh age of man – ‘a second childishness and mere oblivion, sans teeth, sans eyes, sans taste, sans everything.’ This is not how I want to end my life. I am sure I am not alone.’ It is not surprising that older people fear developing dementia ‘more than diabetes, cancer heart disease or stroke’.5
I sometimes think that Ibsen’s most-censored play ‘Ghosts’ needs to be re-written with HD replacing syphilis of the brain – GPI or General Paresis of the Insane – as the disease that is central to the plot. Thanks to penicillin (to which syphilis still unfailingly responds) GPI has lost its former terrors, though it was almost as common in its day as Alzheimer’s is in ours. Like congenital syphilis, HD is passed on from an affected parent, though the mechanism is genetic rather than bacterial; and like syphilis, HD is sometimes the result of irregular or unsuspected sexual liaisons, as with the dissolute but outwardly respectable Capt. Alving in ‘Ghosts.’ However, the main reason for dragging a long-dead Norwegian playwright into this discussion is that one of the most electrifying parts of the play comes near the end, where Capt. Alving’s artist son, young Osvald, realises that he is losing his mind from GPI. (Ibsen’s description of the
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affected brain as looking ‘like cherry-red velvet’ is medically inaccurate but memorably vivid.) Osvald makes it clear to his horrified mother that he plans to commit suicide with morphine, precisely because he thinks he cannot trust her to do the job for him when he can no longer do it for himself, though the play ends without that particular question being resolved. ‘But this is so horribly revolting’, says Osvald. ‘To be turned into a helpless child again. To have to be fed, to have to be ... Oh! It doesn’t bear talking about.’ Those are essentially the reasons given by people with early Alzheimer’s who want to go to Dignitas. I am pretty sure they were an important consideration for the people who took part in my impromptu survey and for those in the larger and even more persuasive surveys to be discussed shortly.
Many contributors to this book emphasise that what concerns them most about the way they may die is not the prospect of unrelievable pain but of unrelievable and progressive loss of dignity. Most pain can indeed be adequately controlled and even the failures and indignities of terminal care described in Chapter 10 have rarely to be endured by patient or family for more than a few weeks. In contrast, the indignities of dementia – as feared by the patient in the early stages even if largely experienced by the family towards the end – often start well before the terminal stages and commonly persist for many months or even years.
For many people, an additional consideration is that they do not want their families to have to watch them living and dying in this sorry state. This may be a minor and secondary motivation for MARS for some patients but a primary and important one for others. As Baroness Warnock puts it: ‘I simply do not want to be remembered as someone wholly
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dependent on others, especially for the most personally private aspects of my life, nor can I tolerate the thought of outstaying my welcome, an increasing burden on my family, so that no one can be truly sorry when I die and they are free.’ To our opponents, such sentiments are held to reflect dangerous pressures in society. To most people, I think they will be viewed as altruism. Furthermore, what we spend here on a week’s residential or, a fortiori, hospital care for one person with advanced dementia would fund quite a lot of rather useful treatments in countries where in addition to high infant mortality, many adults die of easily treatable or preventable diseases long before they get anywhere near our normal retiring age. Among other organisations, Médecins Sans Frontières will benefit in my will from the money that I hope will not be spent on caring for my own body when my brain has gone. I find that thought quite comforting.
The usual progress of Alzheimer’s disease – and of other varieties – is a slow and steady decline into fatuity and incontinence, though as with all illnesses, some patients have a more (or less) rapid course than the average. In a recent British post-mortem study, the mean duration of the disease was 7.1 years. 25% of cases died within four years, 50% within seven years, and 75% within ten.6 Current drugs for Alzheimer’s can make that decline even slower and few patients would not want to give them a trial. However, they can only delay the inevitable. They cannot prevent it. Developments in genetic testing may make it easier to predict both the likelihood of developing Alzheimer’s and the speed of decline, though if HD is any guide, many actual or potential sufferers will not wish to know either of those predictions.
It therefore follows that sufferers who prefer MARS (or
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self-deliverance) to living with steadily diminishing awareness and dignity until they die need to make the necessary arrangements well before they lose mental capacity; and therefore while they may still have at least a few months of life that might bring them and their social and family circle some pleasure to set against their declining abilities. This is not very different in principle from patients with a progressive neurological disorder – e.g. motor neurone disease – deciding to go to Switzerland before their loss of mobility or the need for assisted breathing makes travel too difficult. If MARS becomes legal in Britain, such neurological patients will be able to delay their planned deaths by weeks or months because travelling to Switzerland will be unnecessary. However, for Alzheimer patients planning MARS, it is not loss of mobility that may determine the timing but loss of mental capacity and that is not negotiable.
Several recent publications show that the results of my informal survey in the 1980s were very similar to those of larger and more sophisticated studies today. A British survey published in 2007 questioned 725 members of the general public in London and the South East. ‘In the face of severe dementia, less than 40% of respondents would wish to be resuscitated after a heart attack, nearly three- quarters wanted to be allowed to die passively and almost 60% agreed with physician assisted suicide. ... Our survey suggests that a large proportion of the UK general public do not wish for life-sustaining treatments if they were to become demented and the majority agreed with various forms of euthanasia.’7 That as many as 40% would want to be resuscitated may reflect the intriguing additional finding that: ‘White respondents were significantly more likely to
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refuse life-sustaining treatment and to agree to euthanasia compared with black and Asian respondents.’
I don’t want to digress too much about this last point but I would guess that religiosity was an important factor in the significantly different levels of treatment refusal, since the black and Asian respondents were almost certainly more religious, as a group, than their white counterparts. A very recent report from the Netherlands8 describes the responses of three groups to two hypothetical ‘end-of-life’ scenarios. One involved cancer, the other dementia but in both cases, the patients have reached the stage where rational communication is no longer possible. In the dementia scenario, ‘you ... no longer recognise your family or friends. You refuse to eat and drink and you retreat more and more into yourself. To communicate with you about medical treatments is not possible any more.’ Respondents were asked to state their preferences in this situation about artificial feeding and hydration, antibiotics in the event of pneumonia, resuscitation in the event of cardiac arrest and artificial respiration.
The preferences of 5661 respondents who were members of the Dutch equivalent of Dignity in Dying and had completed Advance Decisions were very similar to those of a representative sample of 1402 Dutch citizens who were not members and had not completed an Advance Decision. In both groups, a large majority ‘want to forgo all four presented treatments’ for both cancer and dementia. The remaining group consisted of 1059 members of a ‘Christian-oriented’ patient organisation which, in contrast to conventional Advance Decisions, encourages its members to complete a ‘wish-to-live statement.’ This predictably rejects ‘actions with the purpose of actively terminating life’ but also, in theory,
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rejects ‘excessive, medically futile treatments at the end of life’ as well. In practice however, of this largely Protestant group, 71% definitely or probably wanted artificial feeding and hydration, 67% wanted antibiotics for pneumonia, 59% wanted breathing assistance and 47% wanted resuscitation after cardiac arrest, even when ‘personality annihilation’ had occurred and meaningful communication was impossible; and almost certainly never would be possible again.
Unsurprisingly, especially given the progressive bureaucratisation of British medicine and the pervasive post-Shipman paranoia, what most of the public apparently wants is not what it is likely to get, at least if a survey from Finland is any guide. Over 500 Finnish doctors were asked how they would deal with two clinical scenarios, one involving a terminal cancer patient, the other a patient with advanced dementia. Only 17% said that they would give active [i.e. resuscitative] treatment to the cancer patient but 43% of them would give it in the case of dementia.9 Another factor – not much discussed – is that private nursing homes naturally like to keep their beds filled and dead patients pay no fees.
Ironically, the situation would be very different for a patient in a persistent vegetative state. In such a case, a judge would probably let the doctors stop tube feeding so that death from dehydration would occur in a few days, as happened in the case of Tony Bland, described in Chapter 1. This is not normally considered a nice way to go but of course, as a vegetable, the patient won’t feel any discomfort. Only his or her family will. However, if he is only half-vegetative (which is a reasonable description of advanced dementia) he will often be fed and watered until he rots, which is literally what will happen if he gets severe bedsores.
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It is sometimes said – or hoped – that people with severe dementia are not suffering as much as observers fear they are, because progressive brain failure makes them unaware of most aspects of their existence. Loss of short-term memory may well protect them from recollections of unpleasant things that they experienced in previous days or weeks. After all, during a general anaesthetic that is just a little bit too light, patients may move or cry out in response to painful stimuli but they usually have no recollections or complaints after they wake up. However, we cannot be sure that similar mechanisms or similar consequences are involved in patients with dementia. In any case, the failing brain quite often conjures up disturbing phantoms and fears that are not less disturbing for having no basis in reality. Nobody who has seen frightened and confused dementia patients, sometimes fighting off their blameless carers and screaming in terror or anger, can confidently deny that such routine scenes in the nation’s nursing homes and hospitals involve both severe distress and great indignity.
1. de Boer ME, Dröes RM, Jonker C, Eefsting JA, Hertogh CM. Advance directives for euthanasia in dementia: how do they affect resident care in Dutch nursing homes? Experiences of physicians and relatives. . 2011 Jun; 59(6):989-96.
2. Hertogh CM, de Boer ME, Dröes RM, Eefsting JA. 2007. Would we rather lose our life than our self? Lessons from the Dutch debate on euthanasia for patients with dementia. Am J Bioeth 7(4): 48–56.
3. Di Maio L, Squitieri F, Napolitano G, Campanella G, Trofatter J, Conneally M. Suicide risk in Huntington’s disease. J Med Genet 1993, 30; 293-5.
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4. Cummings JL, Morstorf T, Zhong K.. Alzheimer's disease drug- development pipeline: few candidates, frequent failures. . 2014 Jul 3;6(4):37.
5. Batsch NL, Mittelman MS. 2012. World Alzheimer’s Report 2012: Overcoming the stigma of dementia. Alzheimer’s disease International: London, England. Available at: http://www.alz. co.uk/research/WorldAlzheimerReport2012.pdf; (Accessed 11th Aug 2012.)
6. Armstrong RA. Factors determining disease duration in Alzheimer's disease: a postmortem study of 103 cases using the Kaplan-Meier estimator and Cox regression. . 2014;2014:623487.
7. Williams N, Dunford C, Knowles A, Warner J. Public attitudes to life-sustaining treatments and euthanasia in dementia. . 2007 Dec;22(12):1229-34.
8. Van Wijmen M, Pasman H, Widdershoven G, Onwuteaka- Philipsen B. Continuing or forgoing treatment at the end of life? Preferences of the general public and people with an advance directive. J. Med.Ethics. Published online September 2nd 2014. 10.1136/medethics-2013-101544
9. Hinkka H, Kosunen E, Lammi EK, Metsänoja R, Puustelli A, Kellokumpu-Lehtinen P. Decision making in terminal care: a survey of Finnish doctors' treatment decisions in end-of-life scenarios involving a terminal cancer and a terminal dementia patient. . 2002 May;16(3):195-204.