Care Homes

Should we be able to choose our own death?

The BBC Ideas website has recently added a short video titled ‘Should we be able to choose our own death?’. Although MDMD had no part in its making, it demonstrates one really good way of achieving our goal.

It is a personal opinion piece by philosopher Nigel Warburton. He starts by asking us to imagine a world where we get what we all deserve: a good death. He then continues to describe his utopian vision of “Good Death Centres”.

The safeguards he proposes are well aligned with those of MDMD. To receive medical assistance to die at one of Warburton’s proposed “Good Death Centres” the applicant must satisfy the following conditions:

  • Undergo thorough psychological examination and counselling by trained experts with experience in end of life situations.
  • Have sufficient mental capacity to make a life-ending decision
  • Demonstrate a genuine desire for a medically assisted death
  • There must be a good reason, such as a painful terminal illness or the first signs of dementia
  • The person must have a well informed understanding of their situation and the alternative options available

As the video says at the end… “Its a comforting thought”.

Another comforting thought is provided by palliative care doctor Kathryn Mannix in her video ‘Dying is not as bad as you think’ in the same BBC Ideas series. MDMD agree with her that death needs to be talked about more and no longer be treated as a taboo subject. Mannix describes a peaceful, natural death. For those where this sort of death comes quickly, without a large amount of trauma, distress and loss of dignity leading up to it, Warburton’s Good Death Centres are not necessary. However, Mannix doesn’t give information about the likelihood of various causes of death, and of having the sort of good death she describes. We know, for example that in England and Wales dementia is now the leading cause of death, and that many more people die with it than of it. People who have witnessed people dying with or of dementia, often say that they would not wish to die that way themselves. Other causes of death are discussed here.

MDMD suggest that the truly comforting thought is to have both options well funded and available: excellent palliative care, with the safeguarded option of a medically assisted death, if this is necessary for the patient to have what they consider to be a good death, in their particular circumstances.

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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.

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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.

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Suspended sentence for failed mercy killer

The BBC and the Guardian report the particularly tragic story of 95 year old Denver Beddows who admitted battering his 88-year-old wife Olive with a pan and a hammer at their home in Warrington. Mrs Beddows survived the attempted murder. Mr Beddows received a two year suspended sentence.

Apparently Mrs Beddows had pleaded with her husband to end her life so that she would not die in a care home. This is given credibility by the fact that Mrs Beddows has now forgiven her husband and wished to be reunited with him.

The story is complicated by the fact that according to psychiatric reports Mr Beddows had a history of depression dating back to 1962 and was “clearly under a great degree of mental strain and was not thinking straight”.

Without a compassionate right-to-die law, it is hard to see how tragedies like this can be avoided. With an appropriate law, Mrs Beddows would be able to formally request medical assistance to die. Before being granted, the request would be assessed by multiple independent professionals who would evaluate, amongst other things:

  • Did Mrs Beddow have the mental capacity to make a life ending decision?
  • The medical situation leading to Mrs Beddows request – presumably an 88 year-old, in need of a care home had a serious illness. What were the prospects of a recovery that Mrs Beddows would find meaningful?
  • Whether Mrs Beddows was being coerced into making her request. Was there evidence of a long held view that she would want an assisted death if she was so ill as to require permanently living in a care home – something that she foresaw that she would find intolerable. In its best form such a view would be documented in a signed and witnessed advance statement. This would help doctors and others assessing the case to be confident that it was her own choice. MDMD advocate such advance statements to be made at the same time as an Advance Decision.
  • Whether all other possible solutions have been properly examined.
  • Was she suffering from a curable depression?
  • Might she adapt, given time, to a changed situation following some life-changing change in circumstances.

If, following careful evaluation by multiple independent professionals, the conclusion was that her wish to end her life was safe and persistent, then with appropriate medical assistance, she could have the good death she wished for. If the request was found to be unsafe and rejected it would not be defensible for someone to attempt murder or assist suicide – so vulnerable people would be better protected than at present.

For some people, even the best nursing or palliative care is not the type of end of life they want. Instead of fighting on against inevitably worsening illness, they would prefer to peacefully go to sleep and not wake up, often in their own home, possibly in the company of those closest to them. Why should they be denied this rational choice?

In the absence of an appropriate right-to-die law, cases like this will persist. Untrained, emotionally involved people will take the law into their own hands. They will try to assist in suicide, or even attempt murder. It may go horribly wrong, as in this case. It could be very traumatic. The person may not die but be left with serious injuries. Worse, once the life has been ended there is no way of knowing whether the action really was at the deceased’s request. Where are the safeguards in that? Yet that is what parliament decided was a “safer” option than really tackling the issue of what right-to-die legislation this country should have. The result: people who would like an assisted death have to continue to suffer, against their will, and be denied the good death they seek. And in addition, people, like Olive Beddows, have to beg apparently well-meaning people to assist suicide or murder. They risk themselves ending up in a worse situation. The person assisting them will be subjected to, at best, a police interrogation, and at worst, criminal charges and a custodial sentence. The parallel with backstreet abortions before abortion was legalised is chilling.

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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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Couple in joint suicide pact to avoid going into care

The Daily Telegraph reports the case of a Devon couple in their ’80s who successfully carried out a joint suicide. From the article it appears that this was a rational, well thought out, end of life choice. However, it is unfortunate that this couple needed to end their lives in this way. Perhaps, with more compassionate and flexible legislation they might have been able to have a better death. In particular:

  • Saying goodbye to their relatives and friends.
  • Avoiding the secrecy and risk of failure of their plans.
  • Delaying their death in the knowledge that there would be medical help to assist in safely and painlessly ending their lives when they felt their quality of life was permanently below the level they wished to accept.
  • Avoiding the shock and distress they undoubtedly caused to their cleaner who discovered their dead bodies, and their family who were unprepared for their action.
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My Death, My Decision is a company limited by guarantee, registered in England company number 11758121 and located at Unit A 39 Moreland Street, London, EC1V 8BB.