Dignity in Dying

Progress in Victoria, Australia

MDMD is pleased to see that an assisted dying bill in Victoria is making good progress, having passed a vote in the lower house by 47 to 37. The Bill still needs to pass a vote in the upper house.

See this BBC report, for example. More details are provided in the Dignity in Dying news story.

While the bill is a significant step forward, it is restricted to the “terminally ill”. In the case of Victoria, this is defined as being diagnosed with an incurable disease, illness or medical condition that is expected to cause death within 12 months. It is interesting that Victoria chooses a 12 month condition rather than the 6 months used in US states, or the “reasonably foreseeable” death, with unspecified time duration, used in Canada. Switzerland, the Netherlands and Belgium do not have a time limit in their assisted dying legislation.

The bill proposed for the UK and rejected by the House of Commons in September 2015 followed the Oregon model and was restricted to those with a life expectancy of 6 months or less.

Which time limit, (if any), should be used? Why should terminally ill people in the UK whose life expectancy is between 6 and 12 months be denied the opportunities that those in Victoria may soon have? MDMD would like to see clarification on this from those, like Dignity in Dying, who both welcome the developments in Victoria, but seek to restrict assisted dying in the UK to those who are within 6 months of dying. It they publish explanations of their position, we will gladly link to them here.

From the MDMD perspective, we consider any time limit to be arbitrary, and at best a first step towards a more inclusive criterion. Perhaps this is necessary caution. But time limits are impossible for doctors to accurately predict and unfairly exclude people who may have to suffer for many years – such as Tony Nicklinson, Omid, and dementia sufferers like Alex Pandolfo.

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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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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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Dementia now leading cause of death

A BBC report highlights the latest statistics published by the ONS on causes of death. Dementia (including Alzheimer’s disease), is now the leading cause of death, accounting for 11.6% of all deaths in 2015. This has now overtaken coronary heart disease, though for men that still remains the leading cause of death.

For those over 80 years old, dementia is the leading cause of death for both men (13.7%) and women (21.2%). The ONS explain the increase as being “… in part because people are simply living longer but also because of improved detection and diagnosis”.

The statistics underline the importance of extending the scope of proposed right-to-die legislation beyond those who are within 6 months of dying. Dementia is a terminal illness where the time from diagnosis to death averages 7 years. It is a cruel way to die – few people would find it the “good death” they might hope for.

In the early stages, dementia sufferers retain their mental capacity. MDMD campaign for people in the early stages to have the option of an assisted death if that is what they wish, in order to avoid the suffering caused by the later stages as mental capacity ebbs away. Even the best palliative care is unable to relieve the loss of dignity and personal identity that later stage dementia brings, though some sufferers have so little capacity that they are unaware of the true nature of their condition.

We urge politicians, medical professionals, and Dignity in Dying¹ to recognise that some people, quite rationally, do not want their lives to end this way and would much prefer the option of a medically assisted death – even if their life is a little shorter than medically possible. They believe in quality of life, not just quantity of life at any price. These vulnerable, mostly elderly people, who ask for help to die, deserve our compassionate, legalised assistance, provided it is their own, well-considered wish, and they still retain the mental capacity to make the decision.

¹Dignity in Dying “believe everybody has the right to a good death. Including the option of assisted dying for terminally ill, mentally competent adults.” Unfortunately DiD interpret “terminally ill” to mean within 6 months of dying – something doctors can not accurately predict. People dying with dementia will generally no longer have sufficient mental capacity by this stage, so the DiD policy will not help people with the most common terminal illness – one which can be very unpleasant in its later stages, and where an assisted death could avoid huge suffering.

MDMD believe it is time for DiD to change their approach in the light of the increase in dementia as a cause of death.

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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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