Switzerland

MS Sufferer Colin Campbell’s deferred assisted death raises important questions about help for the disabled

In April 2017 MS sufferer Colin Campbell publicly stated his intention to end his life in Switzerland on June 15th 2017. Due to the intervention of fellow MS sufferer Rona Tynan, and the alternatives and assistance she helped him consider, Colin has deferred his appointment in Switzerland.

In October 2017 a BBC story and podcast discusses why Colin changed his mind. Colin is clear that he has deferred his Swiss appointment, rather than cancelled it, and Rona agrees that she supports assisted dying and respects Colin’s decision. One of the participants in the discussion was Mik Scarlet, a member of Not Dead Yet UK, a group of disabled people who oppose assisted suicide. Mik makes some very important points. “You can’t say you’ve made an informed decision if you don’t know about scooters or care plans.” He goes on to say “I do believe that eventually we will get assisted dying”, but he points out that this should not be permitted until all possible alternatives have been considered – including the services which may be able to make someone’s quality of life acceptable to them again, and the support to help them adjust to changed circumstances. He continues, “…then when people do get to the point when they want to die they got there at a point where it is real. It is not because they are not supported and they are not being helped.”

MDMD agrees with Mik on this. One of the problems with the legislation as it is today, is that people are taking their own life, either on their own, or with medical help in Switzerland, without necessarily having the full support that could make their quality of life acceptable to them again. Colin Campbell’s case suggests that many others may be suffering unnecessarily due to lack of access to available services.

Exactly what level of support is available, at the time it is needed, is of course down to politicians, social services, NICE, and ultimately to us, the voters. Demand is always likely to be higher than the state can provide. Whether the support available at the time it is needed is sufficient for the individual concerned, is a personal decision. But until there is a change in the law and people are encouraged to seek help before ending their life, tragic early deaths are bound to occur out of ignorance of the help available.

Importantly, when accepting help, people need to have the confidence that their end of life wishes will be respected in future – even if for them, a good death, means a medically assisted one. Without a change in the law, there is a risk that in accepting help, the ability to end one’s life unaided will be lost. This can give rise to a real fear of being trapped in a system that can’t help in the way the person wishes. This is another reason why today some people, even when well informed of available options, may choose to end their life too soon, while they still can, knowing that no one can legally help them later.

Where MDMD and some of those opposed to a change in the law may differ, is that to MDMD it is not acceptable for people suffering to be denied a good death now, in the hope of better care services at some distant unspecified point in the future, long after they have died unpleasantly. People need to make decisions about their lives, and their deaths, now, in the situations they find themselves – having fully considered all the options currently available. A well designed assisted dying law and activation procedure can help ensure that people who choose an assisted death do make a well informed choice. The present law does not do that and needs to be changed. With such a law in place, no one need suffer against their will. As care and support for incurably ill and dying people then continues to improve, we can anticipate that this could cause some people to delay or not request the assisted dying option.

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Dementia sufferer plans to go to Lifecircle

The Mail on Sunday published a story about MDMD supporter Alex Pandolfo who suffers from Alzheimer’s and is planning to end his life at Lifecircle in Switzerland. It is a significant article as Alex is explaining his reasons before he ends his life. He mentions one of his difficulties as being the timing of when to end his life. He wants to live as long as possible, but not risk leaving it too late, when his mental capacity is lost.

My daily worry is that I won’t time it right and go when it’s too late.

The article is excellent so far as it goes, and has received many comments, almost universally supportive. However, it fails to go into sufficient detail to explain that dementia sufferers like Alex would not be helped by the Bill rejected by parliament in 2015 as that was limited to those with a life expectancy of 6 months or less. By the time a dementia sufferer reaches this point it is highly unlikely that they will have the mental capacity to make a life ending decision. Dementia is now the leading cause of death in England and Wales according to data from the Office of National Statistics.

MDMD campaign for a law that will help people like Alex.

MDMD frequently gets requests from journalists for personal stories of people who want to have an assisted death. If you have a relevant story you would be prepared to talk to a journalist about please let us know. We can provide appropriate press contacts and can provide background and supplementary interviews to help ensure your story is reported correctly. These articles are very important to publicise and build support for our campaign. If you agree with our aims, please consider helping us in this way.

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MS Sufferer heading to Switzerland while he still can

The Scottish Sun reports the case of Colin Campbell.

Colin suffers from the Primary Progressive form of MS. He intends to go to Lifecircle in Basle to end his life on 15th June while he still can. He told MDMD “I qualify everything I say with ‘intend’ as my health could fail totally at any time.” He has lived with the gradually worsening condition since 1995, but his quality of life is now deteriorating below the limit he can tolerate, and he needs to take action now, while he is still physically able to.

Colin has bravely chosen to make his decision public in advance, to help demonstrate why a change in the law is necessary. Why should people like him have to go to Switzerland to find compassionate doctors who are legally able to help him have the good death he wishes? We need to provide this in the UK, for mentally competent adults who have made their own, settled choice in the face of incurable, unacceptably low quality of life.

Cameras will record Colin on his journey. Andi Reiss is the independent documentary film maker who is following Colin’s case as part of a larger project looking in detail at the issues around assisted dying.

Colin has told MDMD that his doctors have not discussed his life expectancy with him. The Multiple Sclerosis Trust clearly points out that MS is not a terminal illness. There appears to be no prognosis of six months or less. Given this, it is interesting that Ally Thomson, director for Dignity in Dying Scotland is quoted in the Scottish Sun article as saying “It is a tragic and unacceptable reality that seriously ill people like Colin Campbell feel they have no other choice but to spend their final days traveling hundreds of miles to Switzerland in order to have the dignified death they desire.” MDMD fully agree with her on this. Unfortunately she doesn’t go on to say what option she would like to see for people like Colin. The legislation Dignity in Dying have been proposing would not help him, as his life expectancy is not less than 6 months.  Perhaps this case will help Dignity in Dying see the need to broaden their policy to show more compassion to people like Colin (and Omid), instead of denying them the help they need and thereby prolonging their suffering unacceptably. MDMD certainly hopes so.

MDMD commend Colin for his bravery in being so public at this difficult time. We respect his choice and wish him well in the course he is choosing.

Update October 2017: Colin deferred his decision to end his life in Switzerland. See the story here.

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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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MS sufferer Andrew Barclay ends his life at Dignitas

The Daily Mirror reports the story of Andrew Barclay who ended his life at Dignitas in Switzerland. It includes a clear and articulate video statement made by Andrew  shortly before his death. He had been suffering from MS for 25 years, but it was when his illness entered the secondary progressive stage that Andrew decided that his quality of life was incurably below the level he could tolerate, and that he should take steps to end it. He took time to discuss the decision with his family who, with obvious difficulty, accepted and supported him.

The video ends with a statement that summarises his feelings: “I really don’t see the point in waiting until one is a virtual corpse that simply breathes”.

Some other quotes from Andrew give insight into the difficulties in choosing the time to end his life, but also to the relief that his eventual decision brought him.

“There are still genuine moments of happiness. But they no longer outweigh a life in which every single day is a struggle from start to end. So I have made this decision.

“There will always be a reason not to go ahead with it – Christmas, a birthday, an anniversary.

“The decision is made, the date is set and the hard truth is there is now a job to be done. I’ve spent 14 months fighting to get to Dignitas and there’s now a sense of relief it will soon be over.”

The newspaper article quotes Dignity in Dying Chief Executive Sarah Wootton as saying that it is tragic and unacceptable that people like Andrew feel they have to end their lives in Switzerland. The article fails to point out that the Dignity in Dying proposal for an assisted dying law would not help people like Andrew, as he was not terminally ill with a life expectancy of six months or less.

MDMD campaign for a law that will help people like Andrew.

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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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