Should a right-to-die extend to those with psychiatric conditions?

The BBC report the suicide and background of Canadian Adam Maier-Clayton who took his life in April 2017, aged 27, following a history of psychiatric illness including a condition that left him in extreme pain. The video which forms part of the report shows Adam and his parents clearly explaining their point of view, together with some opposing opinions.

Adam’s illness was diagnosed as Somatic Symptom Disorder, “a psychiatric condition characterised by physical complaints that aren’t faked but can’t always be traced to a known medical illness”. Adam experienced “crippling physical pain throughout his body” which he described as like being “burned with acid”.

Adam believed his condition to be incurable, following years of trying different treatments. He wanted to have a medically assisted death, but although right-to-die legislation was introduced in Canada in 2016, this only covers cases where death is “reasonably foreseeable”, so excludes people like Adam’s.

A young person taking their own life, perhaps especially when done so for psychiatric reasons, seems far more tragic to most of us than when someone chooses a medically assisted death after living a reasonably long life, which they now feel is complete, due to worsening and incurable physical illness. One of the difficulties, with cases such as Adam, is that it is unclear whether the patient will recover. A younger person can generally be expected to live longer to “see what happens”. Doctors naturally want to play safe, pursuing all possibilities of the patient returning to an acceptable quality of life. That is the argument given by critics of Adam’s choice in the BBC article. However what the article fails to clarify is what the evidence is.

We hear much of “evidence-based medicine”, but where is the evidence in cases such as this? For example:

What proportion of people with similar conditions to Adam eventually regain an acceptable quality of life (either by recovering or by learning to cope with their symptoms)?

How long, on average, does it take for them to regain acceptable quality of life? What are the longest and shortest periods one could reasonably expect?

How bad can the symptoms of people in similar situations get? For example, might Adam, had he decided to stay alive longer in the hope that his condition would improve, run the risk of losing the mental or physical ability to end his life if he later decided that his life was intolerable? … or might he run the risk of being sectioned, “for his own protection”, such that he lost his freedom to take his life if he wished? …and if so, for how long?

If psychiatry is unable to give honest and informed answers to questions like these, “evidence-based medicine” is impossible. Doctors presumably should then admit that they don’t know, and should accept that their opinions are little better than those of the patient and his family.  This is particularly important in cases like Adam’s which have proven themselves resistant to all treatments which might have helped. Surgeons and physicians generally accept the decisions of patients who decide against very demanding or unpleasant treatments, particularly if the chance of improvement is low or the extra life expectancy would be small. In a similar way we need to appreciate the limits of what psychiatry is able to achieve, despite is best efforts, and the incurable suffering some patients have to endure as a consequence.

If, on the other hand, the questions above can be answered to some extent, then the patient, with the help of their doctors, has the potential of reaching an informed and carefully considered choice. They can weigh up the chances of returning to an acceptable life, against the experienced pain and difficulty of the current and anticipated condition and the risk that they may never recover. Not an easy decision for anyone. Something that needs time and careful discussion with all involved. What is striking in Adam’s case is that both his parents seem strongly supportive of his decision and believe he should have had the option of a medically assisted death. This suggests that Adam’s decision was based on careful weighing up of the best available evidence.

Some may not agree with Adam’s decision. But in what way do they, as bystanders who don’t have to experience Adam’s condition, have a right to insist that he suffers in a way he finds intolerable for some indeterminate (and presumably long) period of time – possibly for the rest of his life? Does Adam’s situation differ significantly from Omid’s in this respect? (Omid suffers from an incurable physical condition that is not terminal, but reduces his quality of life permanently below the level he can accept.)

Medically assisted suicide is obviously a very last resort, particularly in psychiatric illness. This is reflected in Belgium and Holland where although it is legal, a very small proportion of the total assisted deaths occur in psychiatric cases. However, allowing patients the chance to at least discuss a medically assisted death as one of their options quite often means that they decide not to take it up or postpone it and perhaps try different treatments. The alternative to not being able to discuss it as a possible option can be some extremely distressing and sometimes botched DIY suicides that are much more traumatic for the patient and distressing for the family, than an assisted death.

Further discussion on assisted dying in psychiatric cases can be found in our article regarding depression (particularly the final sections). An interesting discussion of mental illness and assisted dying by a Canadian bio-ethicist is available here. An academic book of papers, mostly by (US) psychiatrists dealing with rational suicide in the elderly is reviewed in detail here. Although it focuses on the elderly, many of the issues are relevant to cases like this, particularly those relating to what steps should be taken by psychiatrists to prevent someone ending their life.

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Spectator article on suicide workshops

MDMD could hardly ignore a recent article in the political weekly The Spectator. Its author, Jessica Berens, attended one of Dr Philip Nitschke’s ‘£50 suicide workshops’, along with ’80 or so men and women, grey-haired and crepe-soled’ who break for tea after Dr Nitschke has described and demonstrated various DIY techniques ‘in much the same manner that a member of the Women’s Institute might present a talk on the best way to make marmalade’. An MDMD supporter who has also attended one of these workshops agrees that the atmosphere was relaxed and quite jolly. Most of the participants seemed in reasonable health and presumably wanted comforting insurance against future horrors rather than early relief from present ones.

MDMD’s policy is not to advise on techniques for ‘DIY’ suicide, nor to put links on our website to reliable information sources. (Our explanation of available end of life options is here) It is a debatable policy. On the one hand, we believe people need professional advice and consultation before receiving assistance. Such advice should ensure that all possible alternative options have been considered thoroughly before suicide is seriously contemplated. MDMD is unable to offer this. We also want to stay on the right side of the law, even though we disagree with it.

On the other hand, when someone has decided, after careful informed consideration, that their life is complete and they wish to end it, how should they do it in the least traumatic, most reliable way? They need reliable advice, support, and assistance – things that are illegal in the UK today. There are many bad ways to be avoided. The “Swiss option” is perhaps the least bad, but this requires significant bureaucracy and travel, as well as expense which may not be acceptable.  By the time someone has rationally decided that they are ready to end their life they are unlikely to be able to carefully research methods on the internet, procure equipment etc. Instead, someone who believes this option may be appropriate at some point in the future, is well advised to make plans while they still can. It is this motivation that leads people to Dr Nitschke’s workshops. The need for workshops like this is a symptom of the lack of legal provision to offer appropriate end of life help when someone’s idea of a good death is an assisted one… the analogy with back street abortions prior to the 1967 Act legalising abortion is stark.

Many of the subsequent comments about the Spectator article were favourable. The main exceptions came from the mother of a 26-year old who naturally blamed Dr Nitschke for his death, even though – as several others pointed out – her son was evidently so determined and indeed death-obsessed that he could easily have found similar or alternative methods in the many other suicide websites and chat-rooms that the Internet now provides. Some of those websites recommend methods that are much more unpleasant than those discussed in the workshops and carry more risk that the end result will not be the death of the body but only the death of much of the brain, leading to some sort of persistent vegetative state.

When the old Voluntary Euthanasia Society (now Dignity in Dying) agreed, in 1978, to publish the world’s first DIY suicide guide (which almost overnight caused a quadrupling of membership) it also agreed that it would only post it to members of at least three months standing. Then as now, it could not guarantee that no unhappy teenager would apply for a copy and it worried about it, but the British suicide rate actually fell following its publication. Social and political events, notably unemployment  and drug abuse rates, especially among the young and unskilled, have a much bigger influence on suicide rates than anything that Dr Nitschke does or writes.

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MDMD Founder Dr Michael Irwin Discusses His End-of-life Plans

The Sunday Times today published an article on the end of life plans of MDMD founder Dr Michael Irwin. (The organisation he founded was the Society for Old Age Rational Suicide, SOARS, which democratically chose to change its name to My Death, My Decision in 2016.)

In the article Dr Irwin explains how, when he feels he is ready, he wants his doctors to be able to give him increasing levels of sedation, in order to ease any pain and suffering. He wishes to enter “continuous deep sedation” which, coupled with his refusal of artificial feeding and hydration, will result in his hastened death. He believes this approach is legal in this country under the doctrine of “double effect”. MDMD discuss this approach in more detail here. The story has been echoed in other papers including the Daily Mail which has free online access.

A survey conducted for the Sunday Times by YouGov found that 67%, of the 1,650 people asked, “think doctors should be allowed to give terminally ill patients enough pain medication to hasten their death”. Unfortunately it is not clear from the article how dependent this finding is on “terminal illness”, nor what the respondents understood by this phrase. (For example, is “terminal illness” taken to include dementia, now the leading cause of death in England and Wales?) The article does say that the percentage rose to 74% when considering responses of the over 65 age group – those more likely to have had first hand experience of the dying process of their parent’s generation, and hence be aware of how unpleasant and prolonged the dying process can be.

Dr Irwin is consulting with the GMC on precisely what doctors may be able to do within the law, and calls for an open discussion of the issue. He says “it is necessary to be honest and generally to regard it as ‘slow euthanasia’ carried out under the doctrine of ‘double effect'”. The GMC has responded saying that doctors would need to seek advice from clinical and legal experts. Surely both doctors and patients need clarification of this issue, given that almost 75% of people close to the age where they may face this situation think this should be an available option. MDMD will watch this story with interest as it unfolds.

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