Belgium

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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Ironically, the option of euthanasia can prolong life, and its quality.

A new BBC report has been published on Belgian paralympian Marieke Vervoort who has obtained papers authorising her euthanasia. She has suffered from a progressive, incurable spinal condition, for 16 years. The report describes her severe pain which is not fully controllable by medication. A video clip shows her suffering. The story follows an earlier report last September.

Her case demonstrates how a supportive, professional approach to palliative care can include the possibility of euthanasia, in a country where it is a legal option. When Marieke felt suicidal, due to her incurable condition, she was referred to a palliative care expert who discussed the option of euthanasia with her. The knowledge that she could end her life in a peaceful manner at a time she chose, gave her the ability to carry on – perhaps prolonging her life by avoiding a suicide, and certainly improving its quality.

“If I didn’t have those papers [fusion_builder_container hundred_percent=”yes” overflow=”visible”][fusion_builder_row][fusion_builder_column type=”1_1″ background_position=”left top” background_color=”” border_size=”” border_color=”” border_style=”solid” spacing=”yes” background_image=”” background_repeat=”no-repeat” padding=”” margin_top=”0px” margin_bottom=”0px” class=”” id=”” animation_type=”” animation_speed=”0.3″ animation_direction=”left” hide_on_mobile=”no” center_content=”no” min_height=”none”][permitting euthanasia], I wouldn’t have been able to go into the Paralympics. I was a very depressed person – I was thinking about how I was going to kill myself … It’s thanks to those papers that I’m still living.”

“With euthanasia you’re sure that you will have a soft, beautiful death.”

In contrast, in the UK there is no legal option of medically assisted suicide or voluntary euthanasia. As a result, doctors cannot discuss it meaningfully, so people like Marieke cannot get the consultation they need. This aspect of the doctor patient relationship is broken. Instead people are driven to consider other ways of ending their lives, possibly earlier than they would wish, while they are still able. Options include going to one of the Swiss organisations that can offer assisted suicide to foreigners, or unassisted suicide. Both these options have many disadvantages. We need a more compassionate approach in this country.

It is important to point out that this case is another example of someone who is not terminally ill, in the sense of having a life expectancy of six months or less. Because of this, the approach taken by Dignity in Dying would not help people like Marieke as that proposal restricts assisted dying to people with a six month life expectancy or less – an approach that was rejected by the House of Commons in September 2015. Marieke’s story is another example of why MDMD do not support the six month criterion.

It is only when assisted suicide or euthanasia is a legal option that palliative care can offer the full range of options a person may want, together with meaningful independent professional consultation to help the patient reach the best decision for them. The irony, demonstrated so clearly by Marieke Vervoort, is that the possibility of a medically assisted death can actually prolong life. And not only that – it can improve the quality of life during the remaining time, helping to reduce understandable depression and anxiety, and eventually bring about a “soft, beautiful death” – the sort of good death some people want.

MDMD wish Marieke Vervoort the best death she can have, on her terms, when she chooses. We are very grateful that she has shared her story with the media to help publicise these important issues. We hope that one day the choices that have helped Marieke will be available to help people in the UK.

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Belgian Paralympian wants Euthanasia… but not yet.

The BBC report the case of Marieke Vervoort who has a degenerative muscle disease and won silver in the 2016 paralympics. She has made it clear that she wants Euthanasia in the future, at the time of her choosing. This is an example of the Extended Advance Decision idea being proposed by MDMD.

How assisted dying might affect disabled people has been a long standing concern of those opposed to a change in the law. In Belgium, which has the one of the most liberal assisted dying laws in the world, there is no suggestion that Marieke Vervoort, is either “vulnerable” or has been pressured into her view, which comes from the fact that she “suffers from a degenerative muscle disease that causes constant pain, seizures, paralysis in her legs and leaves her barely able to sleep.”

However, comedian and disability rights activist Liz Carr, responding in the Guardian, accuses the right-to-die movement of encouraging disabled people to end their lives. “Rather than telling us we have everything to live for – and we do – we are helped to the proverbial cliff edge and offered a push.”

Nothing could be further from the truth. Right-to-die campaigners support everyone, regardless of age or disability, to live as long, as full, and as enjoyable a life as they can. It is only when someone finds their quality of life permanently below the minimum level they are able to tolerate that assisted dying should be an option – and only an option – after long and careful consideration by the person them self. Why should any of us be forced to continue our life, against our carefully considered wishes, when our situation is incurable, and for us, intolerable? This is especially true in the case of someone like Marieke Vervoort who has put on record her wish that when the time is right for her, she would like euthanasia. This demonstrates that she has carefully weighed up the issues and that, for her, for now, she has decided her life is still worth living. Fortunately for her she lives in a country humane enough to give her the “good death” she seeks, when she wants it. In the UK neither abled nor disabled people are treated with that compassionate respect.

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New Scientist reports on assisted suicide for psychiatric cases

New Scientist 23 July 2016 published an article discussing assisted suicide for psychiatric patients – which is legal in some countries such as the Netherlands and Belgium. The article gives an interesting account of the issues around providing medically assisted suicide to people with only psychiatric problems, such as a Dutch woman in her ‘30s.

Unfortunately, in referring to assisted suicide for people who are “not terminally ill”, the article does not distinguish between these very difficult, purely psychiatric cases of younger people, and the far more common case of people who are elderly and are suffering from a number of incurable “non-terminal” conditions, which permanently and incurably reduce their quality of life below the level they can tolerate. This latter category includes people suffering from dementia and other degenerative diseases. The article does not clarify that the term “terminally ill” is usually defined as having a life expectancy of less than 6 months. MDMD strongly reject the idea of restricting medically assisted dying to the terminally ill in this sense, as it would be denied to many people who quite rationally request it, and instead would have to suffer for a long time.

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