Lord Carey explains his change of mind on Assisted Dying

In a short Radio 4 programme in the series “Why I Changed My Mind”, broadcast on 18th Sept 2017, former archbishop of Canterbury, Lord Carey, explains why, in 2014, he changed his mind on assisted dying.

You can listen to it here.

It is most interesting to hear Lord Carey explain that it was the case of Tony Nicklinson that caused him to change his mind. Tony Nicklinson suffered from locked in syndrome and was not terminally ill. He might have lived for many years if he hadn’t refused food and liquid following the failure of his legal challenge in 2014. In Lord Carey’s opinion it is not just incurable physical pain, but also autonomy, existential suffering and lack of dignity, that can justify assisted dying. In this respect, MDMD agree with him. We admire his courage in changing his view and speaking out. We hope that his action will convince others to re-think their position as well.

Read more

Court Ruling no longer needed before life-support is withdrawn from patients with severe illnesses

In a landmark ruling a judge has ruled that in future, in decisions concerning the withdrawal of life-support, including artificial feeding and hydration, a judge’s consent is no longer required in cases where medical opinion and relative’s wishes agree that the cessation is in the patient’s best interests.  The story is reported widely, including by the BBC and the Guardian.

MDMD cautiously welcomes this ruling. Medical professionals are generally the best qualified to make such decisions. Good professional conduct would ensure they take the views of relatives into consideration.

However, making a life preserving or a life ending decision for someone unable to make the choice for themselves, in their best interests, is a huge responsibility which is very difficult for both doctors and for relatives. In the vast majority of cases, both are likely to play safe, quite probably prolonging life for much longer that the patient might want.

But what if medics and relatives do not agree? These situations are not covered by this particular ruling. The end of life process can be even more drawn out and even more difficult, involving the courts. The tragic case of Paul Briggs illustrates this.

Far better for every one of us to make our wishes known clearly in advance, to cover possible future situations in which we have lost our mental capacity and are suffering from an incurable condition which means that our future quality of life will never return to a level we would find acceptable. This can be done today by making an Advance Decision to Refuse Treatment (ADRT). Not only is it a legal requirement for medics to follow a person’s wishes expressed in a valid ADRT, but the document gives certainty to both doctors and relatives, that by following what the person has stated, they are doing what the patient wants – surely a huge relief for both groups.

An ADRT can include a refusal of artificial life-support, in situations the person chooses. This can therefore be used to hasten their death, avoiding delay or possible involvement of the courts. Too few people are aware that this is a right we already have, without any recourse to the recent legal ruling.

MDMD urges everyone, regardless or age or health, to make an ADRT to specify their treatment wishes, should they be unable to make a decision at the time. Once complete, copies should be given to your GP and relatives. The ADRT should be reviewed and updated periodically. ADRTs can be completed at no cost, and free personal advice is available if needed. For more information see our page on end of life planning.

Read more

Preferences for care at end of life when mental capacity is diminishing

An interesting scientific study of attitudes in UK and USA towards end of life care and assisted dying in the face of worsening dementia, was published in April 2017 in the peer reviewed on-line journal Plos One:

Clarke G, Fistein E, Holland A, Barclay M, Theimann P, Barclay S (2017) Preferences for care towards the end of life when decision-making capacity may be impaired: A large scale cross-sectional survey of public attitudes in Great Britain and the United States. PLoS ONE 12(4): e0172104. https://doi.org/10.1371/journal.pone.0172104

The full text can be read online or downloaded as a pdf free of charge.

The study was done by researchers at Cambridge University, Department of Public Health and Primary Care and was reported in an article in Cambridge News.

There are many interesting features of the study:

  • Instead of asking a simple yes/no question about someone’s views on assisted dying it asks respondents what they would like for themselves in a series of worsening situations in a fictional, but all too realistic scenario.
  • It covers the situation where the dying person’s ability to make decisions for themselves is impaired. This is of increasing importance now that dementia has overtaken heart disease as the leading cause of death in England and Wales. Many more people die with dementia rather than of it.
  • The survey shows how people have significantly differing views of what they would wish for themselves. It highlights the difficulties of meeting, and safeguarding, people’s differing wishes.
  • One of the significant findings was that ‘there was a high prevalence of preference for “measures to end my life peacefully” when decision-making capacity was compromised’.
  • The data suggests that most of the people who would prefer “measures to end my life peacefully” to “artificially sustained life”, would only prefer this in the later stages of the scenarios presented. The paper points out that by this stage, assisted dying laws like those available in some US states do not provide what people appear to want. (A similar law was rejected by the House of Commons in 2015, but despite that, this is still the approach advocated by Dignity in Dying). These laws allow assisted dying for those who have mental capacity; have a life-expectancy of 6 months or less; and are physically capable of taking life ending medication themselves. The problems with such laws, in the context of the scenarios considered in this survey, are that by the time most of the people who expressed a preference for “measures to end my life peacefully” would want that option:
    • The person no longer has the mental capacity to make the decision.
    • Their life expectancy may be more than 6-months at the time they wish their life to end.
    • By the time their life expectancy is less than 6-months, they may no longer have the physical ability to take life-ending medication independently.
  • A small proportion of respondents (3.9%) chose “measures to help me die peacefully” in the first stage of the deterioration scenarios, where they were “living in care home, missing meal times for unknown reasons”. This proportion rose to 10% by the third stage, which included some short term memory loss and choking, but before mental capacity was lost. (See Fig 3 in the paper). Most MDMD supporters would fall into these categories. One particularly interesting finding is that this view seems more commonly held in the UK than in the USA.

The paper concludes that “it is challenging to respect the longstanding values of people with dementia concerning either the inviolability of life or personal autonomy, whilst protecting those without decision-making capacity.”

MDMD’s approach to these issues is:

  • Raising awareness of the existing right to refuse treatment, including artificial feeding and hydration, while a person still has mental capacity. (People also have the right to medical support if they choose to stop eating and drinking.)
  • Strongly recommending that people take advantage of the current right to make an Advance Decision to refuse treatment in the event that they lose mental capacity.
  • Campaigning for a law that allows medical assistance to die for those suffering from incurable illnesses that permanently reduce their quality of life below the level they are prepared to accept, provided:
    • They have the mental capacity to make a life-ending decision.
    • The decision is well informed and all alternative options, including palliative care, have been carefully considered and found to be unacceptable.
    • The decision is persistent. (We recommend anyone who believes they would want to be able to take advantage of such a law to write a statement to that effect at the same time as making their advance decision. Such a statement would provide evidence of a long-term, well considered wish for the option of an assisted death. This would give confidence to anyone assessing a request for assistance to die, that the requestor had not been coerced.)

The law we advocate would only help people before they lose mental capacity. We regard this as an important safeguard which avoids the difficulties doctors and relatives would face in making life ending decisions for someone incapable of deciding for themselves at the time. When mental capacity is lost, decision making would continue, as today, to be based on the person’s advanced decision to refuse treatment, and good medical practice to relieve suffering, including double effect and terminal sedation.

The research suggests that significant public education is necessary to help people understand why they may face the difficult choice of when to request an assisted death. An exacerbated form of this choice exists today for anyone considering a medically assisted death in Switzerland. Not only is mental capacity required, but the person must be able to travel to Switzerland and deal with the associated bureaucracy. Alex Pandolfo describes just this dilemma in a recent Mail on Sunday article.

As people become more aware of the unpleasant implications of continuing life into the later stages of dementia, (the story of Joan Cheatle is an example), perhaps the number of people choosing “measures to help me die peacefully” in the earlier scenarios covered in this research will increase. Increasing awareness is certainly one explanation for why older people seem more in favour of assisted dying.

MDMD welcomes this type of research, as it provides detail on the complexities of the issues, stimulates public discussion and raises awareness.

Read more

New research on the increasing amount of care people need at the end of life.

A paper recently published in the Lancet (and available online), has been reported widely. The headline statement is that “the amount of time spent needing daily care at the end of life has doubled in England over the past two decades.” See articles by the BBC and the Guardian for example.

The study compares data for people aged 65 and over from 1991, with corresponding data from a similar demographic in 2011. The paper contains much useful data beyond the simplistic headline. First, life expectancy for a 65 year old has increased significantly. In 1991 a 65 year old man could expect to live for 12.9 years. By 2011 this had increased to 17.6 years, an increase in life expectancy of 4.7 years over the 20 year period. The equivalent figures for women show life expectancy has increased from 16.5 to 20.6 years – an increase of 4.1 years.

More interestingly, the study shows how the care needs for the over 65s are changing. The report uses a measure of care needs in terms of the frequency with which care actions are needed. “High dependency” is defined as needing 24-hour care to cater for frequent unpredictable needs. This could be as a result of being bed or chair bound, or incontinent for example. “Medium dependency” refers to needing care at regular intervals throughout the day, for example with preparing meals. “Low Dependency” refers to help needed less than once per day, such as with baths, shopping or cleaning. “Independent” means anyone else.

People have different views as to how much care they would be happy to receive in later life. Some wish to live as long as medical science can enable, regardless of how much care they would require. Others would prefer to have assistance to die when their quality of life gets permanently below a certain minimum level they consider tolerable. We can roughly equate this quality of life measure with the level of care that is necessary. Those who do not wish to live as long as possible might reasonably choose to end their life when they reach “high dependency”, or for some, possibly “medium dependency”, depending on their specific situation. Obviously any decision a particular person might reach, that their life is complete and they should take steps to end it, depends on many factors, but dignity and independence in terms of care needs, and the anticipated duration of this level of care, are likely to be strong factors.

In 1991, men of 65 or over could expect to require high dependency care for 0.4 years. This rose to 1.3 years by 2011. For women the figures are 0.6 years in 1991, rising to 1.9 years by 2011. This is a more than three-fold increase for both men and women over the 20 years considered.

If we look at the duration that a 65 year old could expect to need either medium or high dependency care, (the “daily care” referred to in the headline report), the figures for men are 1.1 years in 1991, rising to 2.4 years by 2011; and for women, 1.6 years in 1991 rising to 3.0 years by 2011. This is the “doubling” which was widely reported.

Of course, these expectancy figures are averages. Some people will have much longer than average periods of medium and high dependency care, while for others they will be much shorter.

The figures are highly significant for those who would prefer not to spend an extended period of time with substantial care needs at the end of life. For them it is perhaps the three-fold increase in expected duration of high dependency that is the most worrying statistic.

MDMD would like such people to have the legal option of a medically assisted death, if that is their own well-informed and settled wish, without having to travel abroad. This report reinforces our view that assisted dying legislation needs to provide help for people based on their quality of life, irrespective of their life expectancy. To limit assisted dying to those with a life expectancy of six months or less, (as recent failed parliamentary attempts have tried to do), misses the point that today’s 65-year-olds can expect to live in a state of high dependency at the end of life for well over a year for men, and nearly two years for women. This is not the sort of good death that some people want.

Read more

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.

Read more

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.

Read more

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.

Read more

Farewell to Lord Joffe

MDMD bids farewell to one of the pioneers in the battle to legalise assisted suicide in the UK.  Lord Joffe of Liddington, who died on 18 June 2017 at his home, age 85, fought for terminally ill people to be given the right to die.  He was a front runner in the House of Lords on the subject of dying with dignity, and presented four bills in the House but unfortunately, in his lifetime, his objective was not achieved.

Lord Joffe was appointed to the Lords in 2000.  Soon after his appointment he began pursuing the cause of the right to die.   He became a member of the Voluntary Euthanasia Society (which has since been renamed Dignity in Dying).  Whilst enjoying public support, he did not win over the religious and political authorities.

In 2002 he tabled a private member’s bill.  This was a proposal to enable a competent adult with unbearable sufferings to request and receive medical assistance to die.  The bill failed in June 2003.  Lord Joffe made several amendments to the bill and in 2006, and at his fourth attempt, he failed again.  He said that “it is a human right issue” and that “if patients are suffering, doctors should do something”.

Lord Joffe showed his dedication to good causes throughout the world and thought that passage of the bill to assist terminally ill patients to die was inevitable.  He said that “Most of those who oppose assisted dying opposed the decriminalisation of homosexuality, they opposed inter-faith marriage and abortions, all of these. Opponents [to assisted dying] don’t seem to recognise we are developing into a more and more compassionate and caring society. This doesn’t mean they themselves are not caring and compassionate people, it means they have a bit of a blind spot when it comes to the compassionate development of our law.”

We who remain must continue to fight for the cause of assisted suicide, so courageously undertaken by Lord Joffe.  MDMD believes that right-to-die legislation should not be restricted to those who are terminally ill (in the sense of having a life expectancy of six months or less) as this would exclude many deserving cases, and is a criterion which doctors say they would have difficulty implementing. We are actively working to define safeguards which will ensure that people who do not wish to have an assisted death are protected from possible coercion, but which can allow those who have a well-considered and persistent desire for medically assistance to die, when faced with incurable suffering, to have the good death they wish for.

Update 24th November 2017: Lord Joffe’s daughter, Deborah, writes about her father’s end of life.

Read more

A Good (Assisted) Death in Canada

Canada legalised a limited form of assisted dying in 2016. A long article in the New York Times gives a detailed and inspiring account of John Shields who died by lethal injection in British Columbia. He suffered from an incurable condition, amyloidosis, which gave him increasing pain that he no longer wished to endure.

The article contains a video, (about two thirds of the way through), of a goodbye party which Mr Shields held for his friends and family. There is much laughter and emotion. Mr Shields seemed totally at ease with the fact that he would soon be dead.

Among many interesting aspects to the story is the fact that Mr Shields had been a Catholic priest at one stage in his life. Another is that in Canada, patients who are accepted for medical assistance to die have the choice between either taking a lethal medication themselves (assisted suicide), or for a doctor to give them a lethal injection, (euthanasia). Most patients prefer the latter. However, this puts additional responsibility on the doctor and some doctors find themselves unable to help their patients in this way. Dr Stefanie Green, who ended Mr Shields life by lethal injection, makes a significant contribution by explaining her reasoning, and why she doesn’t believe that offering lethal medication goes against medical training. The article quotes her saying “I think people go into medicine because they want to help people. … This is on the continuum of care of helping people.”

MDMD hopes that the example set by Mr Shields and Dr Green will inspire others to see how someone can have a dignified death in a safe and compassionate manner – what for them is a “good death“. Why should people in the UK be denied a death like this, if that is their wish, when the alternatives are, for them, far less acceptable?

Read more

Dementia sufferer plans to go to Lifecircle

The Mail on Sunday published a story about MDMD supporter Alex Pandolfo who suffers from Alzheimer’s and is planning to end his life at Lifecircle in Switzerland. It is a significant article as Alex is explaining his reasons before he ends his life. He mentions one of his difficulties as being the timing of when to end his life. He wants to live as long as possible, but not risk leaving it too late, when his mental capacity is lost.

My daily worry is that I won’t time it right and go when it’s too late.

The article is excellent so far as it goes, and has received many comments, almost universally supportive. However, it fails to go into sufficient detail to explain that dementia sufferers like Alex would not be helped by the Bill rejected by parliament in 2015 as that was limited to those with a life expectancy of 6 months or less. By the time a dementia sufferer reaches this point it is highly unlikely that they will have the mental capacity to make a life ending decision. Dementia is now the leading cause of death in England and Wales according to data from the Office of National Statistics.

MDMD campaign for a law that will help people like Alex.

MDMD frequently gets requests from journalists for personal stories of people who want to have an assisted death. If you have a relevant story you would be prepared to talk to a journalist about please let us know. We can provide appropriate press contacts and can provide background and supplementary interviews to help ensure your story is reported correctly. These articles are very important to publicise and build support for our campaign. If you agree with our aims, please consider helping us in this way.

Read more