Opinion Poll

An image of paralympic champion Marieke Vervoort.

Belgian Paralympian chooses to end her life with medical assistance

MDMD has been following the story of Marieke Vervoort, the medal-winning paralympic athlete, since she announced her intention to end her life when she felt the time was right for her. Many papers, including The Guardian and The Mail have reported her death by euthanasia on 22nd October 2019. Marieke had endured unbearable pain as a result of the degenerative condition Reflex Sympathetic Dystrophy, an incurable illness which can cause a burning sensation within the limbs, which even the best palliative care could not alleviate.

It is interesting to contrast the approach of palliative care options in Belgium with those in the UK. Marieke’s palliative care doctor gave her the best pain relief he could, but he could also provide euthanasia when asked. In this country that is impossible due to the law preventing medical assistance to hasten death. Instead, when asked how to avoid incurable suffering in the case of dementia, (and by implication other conditions such as Marieke’s where death could not be caused by refusing treatment), Baroness Finlay, Professor of Palliative Medicine at Cardiff University and a long-standing opponent of medically assisted dying, said “there’s no law against committing suicide”. How does she think one could do this? “There are people ordering drugs over the internet now and taking overdoses”, was her response. Attempting to wash their hands of the problem of incurable suffering, and pointing to unsafe and illegal suicide alternatives is not an acceptable position for the palliative care community. The law in Belgium allows palliative care there to set a much better example.

In an earlier interview, when Marieke had obtained papers authorising her assisted death, she said:

“Those papers give me a lot of peace of mind because I know when it’s enough for me, I have those papers… If I didn’t have those papers, I think I’d have done suicide already. I think there will be fewer suicides when every country has the law of euthanasia. … I hope everybody sees that this is not murder, but it makes people live longer.”

The fact that Marieke delayed her death for 3 years since publicly stating her intention to take the option available to her, clearly demonstrates this point. It shows that she took a long time to carefully consider her decision and to ensure that she lived her life as long as she could tolerate, with the help of the best that palliative care could offer. A recent report highlights the extent to which palliative care in the UK fails to relieve suffering at end of life – “17 people per day will suffer as they die”.

The BBC have an in depth interview with Marieke available on-line, recorded in 2016, where she discusses her sporting achievements, the challenges of living with her disability, and her clear wish to eventually have a medically assisted death.

In response to Marieke’s death Christian Today and The Independent Catholic News quote Gordon Macdonald, chief executive of Care Not Killing, who said “It is extremely sad news that Ms Vervoort has chosen to end her life this way, but her death highlights how the right to die has become a duty to die in both Belgium and their near neighbours in the Netherlands.” Really? A Duty? On what basis does he reach that conclusion? On the contrary, it seems clear from her interviews and quotes that far from feeling a “duty to die”, the euthanasia law in Belgium enabled Marieke to live for longer than she might have otherwise, and with the comfort of knowing that a peaceful death was available when she eventually needed it. Gordon Macdonald, in not welcoming the compassion available under Belgian palliative care in extreme situations like this, seems to be saying that Marieke had a “duty to suffer for longer”. MDMD together with the vast majority of the public, consider this position to be callous and medieval.

Graham Spiers, writing in the Times, who also comes from a Christian background, demonstrates a much more compassionate attitude when he says “The Church remains largely against assisted suicide, and with well meaning, but the prolonged, ceaseless, acute suffering of people has made it an impossible argument to sustain. To those, like Vervoort, who despite medicine’s best efforts, were often in excruciating pain, the Church was saying: ‘Bear with it. Hang in there. Don’t deny God. See it through.’ It is an abhorrent stance to adopt.” Fortunately, at least a few Christian leaders agree with Graham Spiers’ view, including Desmond Tutu, the ex Archbishop of Canterbury, George Carey and MDMD Patron and General Synod Member Rev Rosie Harper. Importantly, both George Carey and Rosie Harper recognise that assisted dying should be available for people who are suffering incurably, even if they are not terminally ill – people like Tony Nicklinson, Omid T, MDMD patron and campaigner Paul Lamb and of course, Marieke Vervoort. None of these people would be helped by an assisted dying law which only helped those with a life expectancy of 6 months or less – that criterion too has become “an impossible argument to sustain” and is “an abhorrent stance to adopt”, as Marieke Vervoort’s case demonstrates and as MDMD has always argued.

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93% think that assisted dying is acceptable in at least some situations

My Death, My Decision’s Campaign Policy Director, Phil Cheatle, breaks down the new research commissioned by MDMD.

MDMD has released the results of research it sponsored through the National Centre for Social Research (NatCen). The work tested public acceptability of various forms of assisted dying. In all cases considered the person is suffering from an incurable illness and feels their quality of life in below the level they are prepared to accept (or will soon become so). They have sufficient mental capacity to make a life-ending decision and have considered this option carefully, discussing it with professionals who have agreed that their request is within the (hypothetical) law. The different conditions tested were:

  • Those who are suffering from an illness which will eventually cause their death (regardless of timescale).
  • Those who are expected to die from their illness within 6 months.
  • Those whose illness will not cause death
  • Those suffering from Alzheimer’s disease before they lose the mental capacity to make a life ending decision.

The results are discussed in detail here.

What is astounding about these results is the very high level of support for all these forms of assisted dying. Depending on the scenario, between 88% and 93% of respondents thought it acceptable in at least some situations. Comparing results between the scenarios, it demonstrates clearly that public opinion is strongly in favour of the sort of broader approach to assisted dying favoured by MDMD, as opposed to narrower approaches based on the law in Oregon which limit assisted dying to those who are within 6-months of dying. MDMD is proud to be a founder member of the newly formed Assisted Dying Coalition which brings together the UK organisations campaigning for this broader approach to assisted dying.

We were surprised that the research found that the strongest support was for those whose illness would eventually kill them, regardless of timescale. In this situation 93% of respondents thought that a medically assisted death was acceptable in at least some situations. That is a huge majority.

The current law in the UK prevents assisted dying in all situations. Our new research shows that the doctors and politicians who continue to oppose a change in this law are even more out of tune with the people they are supposed to be serving than was previously thought. How can we have confidence in the medical profession if they do not respect our rational end-of-life wishes? How can we have confidence in our politicians if they refuse to change a law which makes some people suffer unnecessarily, against their will at the end of their lives – making others decide to go to Switzerland for medical assistance to end their lives, often too soon?

Palliative care is a wonderful service that helps many people – and could help even more with increased funding. But even the best palliative care can not help in all situations. I recently asked Baroness Finlay, a leading professor of palliative care and strong opponent of assisted dying, how I could avoid an unpleasant end of life like my mother’s, if I too was diagnosed with dementia. Her answer – to look on the internet for illegal lethal drugs – is totally unacceptable and shocking. 88% of people in our poll think that in some situations like this, assisted dying is acceptable. We demand a more compassionate, patient-centred approach to avoiding end-of-life suffering, an approach that includes medical assistance to die as a last resort.

Of course, agreeing that it would be “acceptable for someone to have medical assistance to die” is significantly different from agreeing to a specific change in the law, where all the safeguards have been carefully thought through. But what is clear is that the debate now needs to move on. We should be no longer discussing whether or not assisted dying should be permitted, but instead be working on the details of how assisting dying can be safely and comprehensively introduced, ensuring adequate protection for those who may be vulnerable. In doing so we should learn from other jurisdictions where some form of assisted dying is permitted.

It is bitterly disappointing that the palliative care medical community are so reluctant to talk constructively about improving end-of-life choice when it includes assisted dying. In the eyes of 93% of the people surveyed, that can only undermine the reputation of palliative care. That is unfortunate, as good, comprehensive, patient-centred, palliative care is an important component in ensuring that as many as possible have, what for them, is a good death.

You can read our full description of the poll and results here, with technical information here.

Update August 2019:

MDMD are pleased to see that our poll methodology was replicated by End of Life Choices, Jersey. They commissioned 4insight to run a poll with the same questions for 1,420 Jersey inhabitants. The results are in line with the MDMD results and in some cases show slightly stronger support. The Jersey report can be read here.

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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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