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.

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.