Dementia

Avoiding Prolonged Dementia

Dementia is now the leading cause of death in England and Wales. How can we ensure we don’t suffer from it for longer than we wish?

Medically Assisted Suicide is one option chosen by a few. In the UK those choosing this option need to arrange appropriate help in Switzerland, as it is not legal here. This has to be done prior to the point where mental capacity has been lost. MDMD campaigns for this to be a legal possibility in the UK, avoiding the additional bureaucracy, journey, and expense at the end of life to obtain a good death.

Another option is to rely on an advance decision to refuse all treatment once a particular mental capability is lost. This is possible in UK. The option is discussed in an essay by Norman L. Cantor, Emeritus Professor of Law, Rutgers Law School. He has been widely published in legal and medical journals on the topic of the legal handling of dying medical patients. His areas of expertise include Advanced Directives and medical decision making for the mentally disabled.

The essay relates specifically to the law in the USA, but the issues it discusses are much more widely applicable – in particular the issue of whether those caring for a patient who is suffering from dementia but apparently not in distress, might decide that the patient may have changed their mind regarding their end of life care wishes, or may not be suffering sufficiently to refuse some simpler treatments. These questions are very difficult for carers and health care proxies, who may “play safe” by agreeing to life prolonging treatments such as antibiotics, perhaps accepting life-sustaining treatments, when alternative painkillers, without life-sustaining properties, might be more appropriate.

Prof Cantor includes his own Advance Directive which is very instructive on how one might make a clear statement of one’s wishes in this regard. In particular he explains the following:

  • At what point in mental decline his decision applies – “..mental deterioration to a point when I can no longer read and understand written material such as a newspaper or financial records such as a checkbook.“
  • Why he refuses treatment -“…intolerable indignity and degradation associated with cognitive dysfunction…“. But also to allow his loved ones to remember him “…as a vital, critically thinking individual…“. And “… to avoid being an emotional, physical, or financial burden on my family and friends, even if they would willingly assume such burdens.“
  • He is clear to maintain his request “… even though I might appear content in my debilitated condition.“
  • The scope of treatment being rejected is clear: “… rejection of any and all life-sustaining means.  This includes simplistic medical interventions such as antibiotics, blood transfusions,…” In the UK, where preventative treatments such as flu jabs are given routinely to the elderly, someone with similar views might wish to explicitly reject these too.
  • In addition to refusing artificial nutrition and hydration he clarifies his wishes regarding assisted feeding – “If I am indifferent or resistant to hand feeding, I do not want to be cajoled, harassed, or in any way impelled to eat or drink.“
  • Finally he considers the possibility that people may think he has changed his mind: “The question may arise as to whether I have had a change of mind and revoked my advance directive.  My wish is that no revocation be found unless I do so while still capable of a considered choice, …“

MDMD thank Prof Cantor for sharing his advance directive publicly – a document that is obviously based on careful informed consideration of the relevant issues. The issues he addresses are important to many of us. Although in the UK an Advance Decision can only be used to refuse medical treatment, an associated advance statement allows a wider description of a person’s views and end of life wishes.

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Senior judge ends his life after being diagnosed with dementia

Several news sources report the suicide of Sir Nicholas Wall, the former President of the Family Division, Britain’s most senior family law judge. The Daily Mail has some particularly interesting quotes.

Daily Mail

The Guardian

Daily Telegraph

BBC

MDMD are not aware of the full circumstances of Sir Nicholas Wall’s death, but the case highlights the following issues:

  • Faced with an illness that permanently reduces one’s quality of life below the level one can accept, a decision to end one’s life is a rational and understandable choice for some people.
  • If the law were changed to provide legal medically assisted suicide, then people like Sir Nicholas would be likely to seek professional support, in the knowledge that a legal medically assisted suicide would be available when necessary. Evidence from countries where this is available demonstrates that in some cases this can help people delay the point at which they chose to end their lives.
  • Dementia, and other conditions which can be intolerable for well over 6 months, highlight the problematic limitations of legalising assisted suicide only for those with a life expectancy of 6 months or less.
  • This is particularly poignant for dementia, as by the time a sufferer has a life expectancy of 6 months or less, they are unlikely to have sufficient mental capacity to safely permit a medically assisted suicide.
  • Dementia is an increasing concern for many people. It is now the most common cause of death in England and Wales.
  • Without a change in the law permitting medically assisted suicide, some people feel forced to take action to end their life themselves. Without controlled legal access to appropriate lethal drugs, alternative methods of suicide are uncertain and prone to failure, possibly leaving the person in a worse state. Some methods are very unpleasant and traumatic for both the person involved and their families.

We need a more compassionate law that allows people like Sir Nicholas Wall to have a good death at a time of their choosing, with appropriate counselling, assistance and company.

UPDATE 7th June 2017

The inquest into Sir Nicholas Wall’s suicide is reported in a piece in the Guardian. He died by hanging in his care home, leaving letters to his wife. The piece does not say whether he was considered to have lost mental capacity, but his actions, letters and planning suggest that his decision was rational. The coroner who examined the note he left said it was clear that he intended to take his own life. Similarly it is unclear whether he had been diagnosed as suffering from a potentially curable depression, as opposed to understandable sadness due to his incurable illness, which for him was intolerable. His nurse, the last person who saw him alive, described how he joked and smiled during her visit. We can reasonably speculate that this is not the behaviour of someone acting out of severe depression.

How much better his death could have been with appropriate legalised assisted dying. He could have had professional counselling – possibly delaying his choice to end his life; he needn’t have died alone; he could have explained to his family, saving them the shock and unpleasantness of a violent suicide …

The tragedy of this case is that Sir Nicholas was not allowed the compassion and medical assistance which would have enabled him to have a good death at the time of his choosing.

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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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PRESS RELEASE: MDMD Response to Noel Conway’s legal challenge on Assisted Dying

Today MDMD issued the following press release:

My Death, My Decision is pleased that, with support from Dignity in Dying, (DiD), Noel Conway, who is most unfortunately terminally ill with motor neurone disease, has begun judicial review proceedings, claiming that the failure of Parliament to amend the present Suicide Act, to permit him to have a medically-assisted rational suicide, unlawfully interferes with his rights.

While welcoming Mr Conway’s appeal, MDMD regards his attempt to change the law only as a “first step”.  By focusing on someone who is terminally ill, we are forgetting that very many other individuals (especially the elderly) may also be suffering severely, and for much longer periods than six months, from various medical conditions. These people may also hope, for the possibility of a legalized medically-assisted rational suicide.  Whenever our Parliament considers legalizing “assisted dying” again, it must then consider changing the law to include all competent, incurably suffering adults – as is fortunately possible today in Belgium, Luxembourg, The Netherlands and Switzerland.

The six-month criterion proposed by DiD is a particular problem for those suffering from early stage dementia. By the time a sufferer is within six months of dying they will have lost their mental capacity to choose an assisted death, should that be available. By then they are likely to have experienced extensive suffering and loss of dignity. Dementia is now the single largest cause of death in England and Wales. [Office of National Statistics:  Deaths registered in England and Wales (Series DR): 2015]

MDMD also wants to comment on part of the extensive statement by Mr. Conway which appears on the DiD website, www.dignityindying.org.uk/news/noel-conway-seeks-change-law .  In this, he notes that, regarding the possibility of going to DIGNITAS in Switzerland, “I do not wish to die in a faceless clinic, away from home and without my loved ones around me”.  Since MDMD was founded in 2009, at least nine of its supporters have travelled to Switzerland to end their lives there. Most of them have gone to DIGNITAS.  Our patron, Dr. Michael Irwin, has personally witnessed five such assisted suicides.  While we strongly agree with the need for assisted dying without travelling abroad, it is a great distortion of the truth to describe DIGNITAS – To live with dignity – To die with dignity, near Zurich, as “faceless”. In fact, The Guardian, on November 18, 2009, noted that it “is sunny, clean and neutral, not unlike a holiday rental apartment”.  Furthermore, everyone can see photos on the DIGNITAS-website. The word “clinic” is inappropriate as there is no medical staff or equipment present (although an individual is interviewed by a Swiss physician, independent of DIGNITAS, upon their arrival in Zurich, who writes the necessary prescription).  Furthermore, family members and friends are encouraged by DIGNITAS to be present when someone dies, and this happens with almost all assisted dying cases.

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Dementia now leading cause of death

A BBC report highlights the latest statistics published by the ONS on causes of death. Dementia (including Alzheimer’s disease), is now the leading cause of death, accounting for 11.6% of all deaths in 2015. This has now overtaken coronary heart disease, though for men that still remains the leading cause of death.

For those over 80 years old, dementia is the leading cause of death for both men (13.7%) and women (21.2%). The ONS explain the increase as being “… in part because people are simply living longer but also because of improved detection and diagnosis”.

The statistics underline the importance of extending the scope of proposed right-to-die legislation beyond those who are within 6 months of dying. Dementia is a terminal illness where the time from diagnosis to death averages 7 years. It is a cruel way to die – few people would find it the “good death” they might hope for.

In the early stages, dementia sufferers retain their mental capacity. MDMD campaign for people in the early stages to have the option of an assisted death if that is what they wish, in order to avoid the suffering caused by the later stages as mental capacity ebbs away. Even the best palliative care is unable to relieve the loss of dignity and personal identity that later stage dementia brings, though some sufferers have so little capacity that they are unaware of the true nature of their condition.

We urge politicians, medical professionals, and Dignity in Dying¹ to recognise that some people, quite rationally, do not want their lives to end this way and would much prefer the option of a medically assisted death – even if their life is a little shorter than medically possible. They believe in quality of life, not just quantity of life at any price. These vulnerable, mostly elderly people, who ask for help to die, deserve our compassionate, legalised assistance, provided it is their own, well-considered wish, and they still retain the mental capacity to make the decision.

¹Dignity in Dying “believe everybody has the right to a good death. Including the option of assisted dying for terminally ill, mentally competent adults.” Unfortunately DiD interpret “terminally ill” to mean within 6 months of dying – something doctors can not accurately predict. People dying with dementia will generally no longer have sufficient mental capacity by this stage, so the DiD policy will not help people with the most common terminal illness – one which can be very unpleasant in its later stages, and where an assisted death could avoid huge suffering.

MDMD believe it is time for DiD to change their approach in the light of the increase in dementia as a cause of death.

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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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Man shot wife with dementia in care home ‘to end suffering’ – BBC News

An elderly man told care home staff his dementia patient wife “had suffered enough” after shooting her at point blank range, a court hears.

Source: Man shot wife with dementia in care home ‘to end suffering’ – BBC News

This story is a challenge to the DPP guidelines. From the details available it appears that the man was acting out of compassion. Did his wife previously ask him to help end her life? Unless she left a written statement there may be no evidence. The moral is surely that if you want someone to help end your life in the future when you feel your quality of life is permanently below the level you wish to accept you should leave a written statement to that effect. It may help a compassionate relative who helps you to die, defend themselves against laws which may otherwise punish them for their compassion.

A more humane legal system, as available in some European countries, would permit someone with dementia to request assisted suicide or euthanasia in the earlier stages of dementia, before mental competence has been lost. That way there is no doubt of the person’s intentions, and they are not dependent on someone else carrying out their instructions to end their life to relieve their suffering.

An assisted dying law which is restricted to those who are terminally ill with a prognosis of 6 months or less (as proposed by Dignity in Dying and rejected by MPs) would not help in situations like this. That’s one reason why it is the wrong approach for this country.

Update: The Hereford Times reports that at the trial it transpired that Mr King was himself suffering from dementia. He was sentenced to 6 years for manslaughter to be served in a psychiatric hospital. The judge said “As you will know, there’s no evidence that she was in pain or suffering any more than anyone else who has succumbed to dementia. This was not a mercy killing. Rather, it was a killing that occurred at a time when the experts agree that you were suffering from dementia causing an abnormality of your mental functions.”

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Helping my Father Go To DIGNITAS

MDMD supporter Penny Hall’s father suffered from dementia. He chose to end his life in Switzerland while he was still sufficiently mentally competent to do so. The story is reported in this Cambridge News article.

Why should he have to travel to Switzerland?
Why should his family suffer a police investigation for accompanying him?

The end of the article talks about Dignity in Dying‘s campaign and points out that their proposed Assisted Dying law would not help people like Penny’s Father. While MDMD supports Dignity in Dying as far as they go, we think their approach is too limited precisely because of cases like this.

MDMD campaigns for a more compassionate law in this country – so that people like Penny’s father can have what they see as a good death without traveling abroad… a law the helps people in early stage dementia – not one limited to the 6-month terminally ill.

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