Psychiatric Issues

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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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Book Review: Rational Suicide in the Elderly

Rational Suicide in the Elderly: Clinical, Ethical, and Sociocultural Aspects

by Robert E. McCue (Editor), Meera Balasubramaniam (Editor)

Springer 2017 (8th Oct 2016)

An entire book devoted to the better understanding of Rational Suicide in the Elderly was essential reading for MDMD (Our name was formerly SOARS: Society for Old Age Rational Suicide). We were pleased to see that SOARS gets mentioned on the first page of the introduction and the SOARS website is extensively quoted in Chapter 6 – an indication of the influence of our campaign.

The book is a collection of 15 papers written mostly by psychiatric academics working in the USA who discuss the notion of rational suicide in the elderly and what they see as the best practices for treating patients exhibiting a rational wish to die. The psychiatric viewpoint is broadened a little with contributions from those in departments of psychology, philosophy and oncology. Two of the 18 contributors come from the UK and two from New Zealand. Surprisingly and unfortunately there are no contributions from medical professionals in the Netherlands, Belgium or Switzerland, where much practical knowledge and understanding of rational suicide is developing as those countries have the most far reaching assisted dying legislation in the world.

Many of the authors carefully question the notion of “rational suicide in the elderly”. How old is elderly? What is a “rational” decision? Can suicide ever be rational? But the book’s prevailing view is that, despite the ethical and philosophical considerations, there do exist people who are suffering from an incurable medical complaint, which renders their life no longer worth living in their opinion, who are not terminally ill, nor mentally ill, are not suffering from a curable depression, but have a desire to hasten their death. This is perhaps best demonstrated in a quote from the book’s final paragraph (in a chapter that carefully unpicks and rejects a lot of the standard justifications for “rational suicide”): “It seems to me obvious that it is sometimes better – kinder, more decent, dignified, compassionate – to bring an end to human suffering than to let it continue.”

Many of the issues considered by the authors in developing an understanding of “rational suicide in the elderly” are the same as those raised by SOARS supporters in the discussions that led to the organisation both changing its name from SOARS to MDMD, and broadening its objectives beyond “Old Age”. (And prior to that, in our consultation on the “When is a Life Complete?” document.)

Given that people exist who rationally believe suicide is their “best” option, the book attempts to give guidance to psychiatrists who encounter such people as “patients”. It is here that the book seems to get into several difficulties.

It is implied that the issue of rational suicide in the elderly is only about those who end up as psychiatric “patients”. The presumption is that a true rational suicide would successfully have done the job him or her self, without ending up in the psychiatrist’s consulting room. The fact that they have instead become a patient leads to the possibility that they may be seeking “help” to overcome their suicidal thoughts. Although this may be true in some cases, there are much wider issues, most notably the case of people who “successfully” choose rational suicide without any counselling.  Is it the correct attitude for psychiatry, or the wider medical profession to take – to accept people rationally ending their life, without professional counselling; alone; without assistance; and often in tragic circumstances? MDMD think not, we would like to see two forms of help available to all potential rational suicides: first, independent counselling to ensure that they are making the correct decision for them, at the right time; and second, legal medical assistance to die within agreed safeguards. It is only in the knowledge that medical assistance to die is a possible outcome, that people will intentionally seek medical help with their rational suicide decision. Without that possibility, the rational person, wishing to hasten their own death, would avoid discussing their plans with their doctors for fear of either being “treated” until they gave up their desire to end their life, or worse, being physically prevented from doing so, possibly including enforced hospitalisation, as a form of “safety planning”. A third risk for those in the UK considering going to Switzerland for medical help to die, is that a full discussion with their doctor may result in the doctor refusing access to medical records needed by the Swiss organisations who help foreigners. In these areas, the doctor patient relationship appears to be broken.

There is an irony here. Only with the option of legalised medically assisted suicide will potential rational suicides wish to consult their doctor. But once they do, it is likely that their suicide can be delayed and in some cases prevented, while ensuring that more people have the “good death” they should be entitled to. Much better a peaceful medically assisted suicide at a carefully considered “right” time, than a traumatic, lonely unassisted suicide, done too early while the person still can. The book does not consider these benefits of assisted suicide and therefore misses many of the issues that need to be discussed in a full coverage of rational suicide.

One important observation it does make is that the reasons given by people seeking rational suicide who are not considered “terminally ill”, as their life expectation exceeds six months, are identical to those who are terminally ill and receive assisted suicide in US states where it is legal. This usefully highlights why the 6 month criterion is so inappropriate.

Once a potential rational suicide is accepted as a “patient”, psychiatrists are in a very awkward position. On the one hand it can be very difficult for a medical professional to accept that an assisted death or worse, an unassisted suicide, is actually the best option for the patient. There is a tendency to see this outcome as a failure. This attitude is something that MDMD thinks needs to be overcome as society better understands the true nature of rational suicide as being the best outcome for some patients. A more pressing concern, especially in the USA where the book is focused, is on possible legal repercussions from relatives of a suicide who might claim that a psychiatrist involved had been negligent. An entire chapter is devoted to “Rational Suicide and the Law”, and several other chapters stress the importance of “risk assessment”, “safety planning” and “preventing impulsive behaviour”. For both these reasons it seems clear that professionals helping those who wish to actively hasten their death need some form of emotional and legal protection to do this difficult work effectively.

The main approaches suggested for working with people seeking a rational suicide are various talking therapies such as “Motivational Interviewing” to help the person understand the motivations behind the desire to end their lives and to expose and build on any uncertainties and desire for change the patient may have. Authors recommend applying these techniques non-judgementally, with respect for the patient’s views. While these approaches may be successful in preventing suicides, they run the risk of undermining a patient’s choice, possibly making them feel guilty in wanting a hastened death. It seems essential to ensure that the person has properly considered all options, including that they may be able to adapt to changed capabilities, but where should this dialogue stop? At what point should the psychiatrist stop challenging the patient and simply accept their view, even if they disagree with the patient’s conclusion? Many of the authors appear to have an attitude that suicide should be prevented if at all possible. The realisation that a hastened death may actually be the best option for some patients sits uncomfortably with what they are legally and ethically bound to do. A re-evaluation of these legal and ethical limitations seems necessary, but the book does not explore this.

Several authors refer to spiritual or religious belief as helping people come to terms with their dependency and changed circumstances. A full chapter is devoted to Christian objections to suicide. This may be appropriate for a USA audience, but in the UK only 59% of the population consider themselves to be Christian, with 25% of the population claiming no religion – a proportion that has grown by 10% over the preceding 10 years, growing in all age categories. (ONS report based on 2011 census data.) The reducing significance of religion is hinted at in a chapter about the attitudes of the “baby boomer” generation which concludes: “… a significant minority will consider suicide to be an intelligent and rational act in the face on an irreversible worsening in the quality of life.”

The penultimate chapter suggests that one or two doses of psychedelic drugs such as psilocybin might be an effective “treatment” for those who have lost meaning in life, possibly to the degree that suicide could be prevented. While this may suit some people, and may indeed reduce suicidal ideation, we must question the extent to which rational suicide is an illness to be treated with drugs that alter the person’s personality, as opposed to respecting the person and their personality as they are, and accepting rational suicide as it purports to be – a rational evaluation of one’s likely future quality of life leading to a decision that the person would be better off dead.

While several authors acknowledge that in some cases a hastened death would be best for the patient, the practical advice is all about attempting to alleviate symptoms, especially in cases where the patient can be helped to find some new reason for living. An important issue that is not tackled is how to help someone decide that their death should be hastened – or rather to corroborate the decision that the person has already reached. Of course, without the necessary law, the decision is irrelevant as the psychiatrist cannot assist. But advice from the psychiatric community is necessary in order to draft appropriate, safe and workable laws. A good law would enable more appropriate action in cases where, after full consideration with professional help, the patient is convinced that a hastened death is in their best interests.

Although the book has the serious limitations noted above, it is a step in the right direction. Many difficult issues are carefully analysed in commendable depth. Psychiatry (and the law) has a long way to go before it can be said to fully support the real needs of people whose quality of life is permanently, unacceptably low, to the point that they consider hastening their death. But at least the issue of rational suicide for people with intolerable quality of life, due to incurable medical conditions, is now firmly placed on the psychiatrist’s couch.

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Dementia sufferers ending their lives in Switzerland

Today the Mail on Sunday published an article about the father of an MDMD supporter who ended his life at Dignitas. Penny’s father Ron Hall suffered from early stage dementia. The psychiatric assessment to ensure he still had mental capacity to make the life ending decision was done by MDMD’s associate coordinator, Colin Brewer. Interestingly, the article goes on to point out that Colin regularly has to refuse an assessment of adequate mental capacity when, in his professional opinion, the person is no longer lucid enough to make the decision to take their life.

Dementia is a particular concern for MDMD. It is now the leading cause of death in England and Wales. Many more people die with dementia rather than of it. The issue of dementia highlights the reason why MDMD does not want assisted dying to be restricted to those who are expected to die within six months. By this stage, terminally ill dementia sufferers are very unlikely to have sufficient mental capacity to safely make the decision, and they will have already suffered for far too long.

Opponents to a change in the law warn that dementia sufferers who choose to end their lives while they still have mental capacity may be shortening their lives unnecessarily, as they may die of something else first. This is true, but some of us would prefer to sacrifice a period of diminishing life quality rather than run the risk of having to suffer the living nightmare that the later stages of dementia can become. It is a difficult choice for anyone – but one that we should be allowed to make for ourselves, provided we are well informed, but before it is too late, we no longer have capacity, and we end up like Joan Cheatle.

A spokesman for the group Care Not Killing commented that “a lot of people fear that when there is a care crisis within the NHS there will be more pressure on people who are elderly and frail to think about ending their lives.” MDMD understands this concern. We propose the idea of an extended advance decision – which allows people to record their wish for the option of a medically assisted death, long before they are elderly and frail. Such an advance statement would ensure that their choice was not the result of pressure, should they be considered vulnerable at the time they make their choice.

MDMD are pleased that articles like the one in today’s Mail on Sunday keep the issues in the public eye. We call on those with concerns over the safety of assisted dying legislation to work with us constructively to find a safe proposal to allow people a “good death” when, for them, that requires medical assistance to die.

UPDATE 24th January 2017

Following the Mail on Sunday article, Radio 5 live contacted MDMD. This resulted in the radio interview with Penny Hall. A reduced podcast of the interview is available here. For the next few weeks the original full interview is here.

Penny’s interview was followed an hour later by an interview with Baroness Ilora Finlay, chair of National Council for Palliative Care and co-chair of Living and Dying Well. MDMD agrees with Baroness Finlay’s comments that everything possible should be done to enhance the final phase of people’s lives. Where we differ is how to deal with the the situation when a person’s quality of life falls permanently below the level the person is able to tolerate, despite having the best care available. Only the person themselves can judge where that point is for them.

The knowledge that medically assisted suicide is available when things get unbearable can help people enjoy that final phase of life for as long as possible. Without it some people feel that the better option is to end their lives themselves, one way or another, while they still can. The irony is that a carefully designed assisted suicide law, working in partnership with the best palliative care, could actually prolong people’s lives and increase it’s quality by removing the fear that the dying process may at some stage become intolerable and they will be trapped.

Until the palliative care community work with groups like MDMD to find a safe, workable way forward which includes the possibility of a medically assisted death in this country, there will be far too many bad deaths, and people like Penny Hall’s father, who decide that the best death possible for them is an assisted one in Switzerland.

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Two BMJ Blog posts on assisted dying in Dementia and Psychiatric cases.

Richard Smith, former editor of the British Medical Journal (BMJ) writes a moving personal story of his mother who suffers from dementia, arguing the case for assisted suicide for early stage dementia patients – as he and his mother did 10 years before.

Colin Brewer, former psychiatrist and current associate coordinator of MDMD, follows this up with another BMJ blog expanding and clarifying the case for Medically Assisted Rational Suicide (MARS) for dementia cases. He expands the arguments to include severe incurable psychiatric cases. Among many important issues he raises, he usefully points out the illogical and cruel limitations of any “terminally ill” time constraint on permitting legal MARS.

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New Scientist reports on assisted suicide for psychiatric cases

New Scientist 23 July 2016 published an article discussing assisted suicide for psychiatric patients – which is legal in some countries such as the Netherlands and Belgium. The article gives an interesting account of the issues around providing medically assisted suicide to people with only psychiatric problems, such as a Dutch woman in her ‘30s.

Unfortunately, in referring to assisted suicide for people who are “not terminally ill”, the article does not distinguish between these very difficult, purely psychiatric cases of younger people, and the far more common case of people who are elderly and are suffering from a number of incurable “non-terminal” conditions, which permanently and incurably reduce their quality of life below the level they can tolerate. This latter category includes people suffering from dementia and other degenerative diseases. The article does not clarify that the term “terminally ill” is usually defined as having a life expectancy of less than 6 months. MDMD strongly reject the idea of restricting medically assisted dying to the terminally ill in this sense, as it would be denied to many people who quite rationally request it, and instead would have to suffer for a long time.

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