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UK Parliament Archives - Page 3 of 3 - My Death, My Decision

UK Parliament

Dignitas hit out at UK politicians

Dignitas issued a hard-hitting press release this week “Ignorance, irresponsibility and hypocrisy – How a majority of UK politicians violate human rights and create suffering and costs“. Here’s an extract:

Just over a week ago, once again an individual from the UK has travelled to DIGNITAS – To live with dignity – To die with dignity, for having access to the human freedom and right to decide on time and manner of his own end of suffering and life, as it has been basically acknowledged by the European Court of Human Rights in 2011. This freedom and right has been violated by the UK once again – for the 394th (!) time now.

A majority of UK politicians ignore that these journeys cause a lot of suffering for the individual and his family and friends. Not only is it very hard for someone already in a deplorable health situation to travel abroad. It all has to take place in secret and with fear, as it is shadowed by an absurd law that threatens to criminalise loved ones who give their compassion and care – something which every suffering individual deserves.

The press release was picked up by the Daily Mirror in an article titled ‘Dignitas blasts “ignorant and irresponsible” MPs for refusing to back change to assisted death laws in UK‘. The Mirror article refers to the case of James Howley who accompanied his partner to Dignitas. On return he was investigated by the police for six  months before charges were dropped. MDMD are aware of other similar cases.

MDMD fully agree with Dignitas that the UK law on assisted suicide is not working and needs to be changed to allow medically assisted dying in the UK, with similar safeguards to those which apply at Dignitas. In Switzerland medically assisted suicide is possible for a person who requests it provided that they are mentally competent and have a medical condition which is incurable and which causes unacceptable suffering. It is not restricted to those who are “terminally ill” in the sense of having a life expectancy of six months or less, which means that it is available to those with the early stages of dementia provided that they still retain mental capacity. MDMD feel this is particularly important now that dementia is recognised as the leading cause of death in England and Wales, and many more people die with it rather than of it.

I’m not frightened of dying, but I am frightened about the way I die

The current law causes far too much suffering, both for the dying person and their family. Many people would agree with Helen Johnson, (James Howley’s partner who ended her life in Switzerland), when she said ‘I’m not frightened of dying, but I am frightened about the way I die’. The option of a medically assisted death in the UK, for those that want it, would greatly reduce that understandable fear, which even the best palliative care cannot allay. This would enable far more people to have a “good deathwhether or not they actually choose medical assistance to die as their end-of-life situation unfolds.

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Farewell to Lord Joffe

MDMD bids farewell to one of the pioneers in the battle to legalise assisted suicide in the UK.  Lord Joffe of Liddington, who died on 18 June 2017 at his home, age 85, fought for terminally ill people to be given the right to die.  He was a front runner in the House of Lords on the subject of dying with dignity, and presented four bills in the House but unfortunately, in his lifetime, his objective was not achieved.

Lord Joffe was appointed to the Lords in 2000.  Soon after his appointment he began pursuing the cause of the right to die.   He became a member of the Voluntary Euthanasia Society (which has since been renamed Dignity in Dying).  Whilst enjoying public support, he did not win over the religious and political authorities.

In 2002 he tabled a private member’s bill.  This was a proposal to enable a competent adult with unbearable sufferings to request and receive medical assistance to die.  The bill failed in June 2003.  Lord Joffe made several amendments to the bill and in 2006, and at his fourth attempt, he failed again.  He said that “it is a human right issue” and that “if patients are suffering, doctors should do something”.

Lord Joffe showed his dedication to good causes throughout the world and thought that passage of the bill to assist terminally ill patients to die was inevitable.  He said that “Most of those who oppose assisted dying opposed the decriminalisation of homosexuality, they opposed inter-faith marriage and abortions, all of these. Opponents [to assisted dying] don’t seem to recognise we are developing into a more and more compassionate and caring society. This doesn’t mean they themselves are not caring and compassionate people, it means they have a bit of a blind spot when it comes to the compassionate development of our law.”

We who remain must continue to fight for the cause of assisted suicide, so courageously undertaken by Lord Joffe.  MDMD believes that right-to-die legislation should not be restricted to those who are terminally ill (in the sense of having a life expectancy of six months or less) as this would exclude many deserving cases, and is a criterion which doctors say they would have difficulty implementing. We are actively working to define safeguards which will ensure that people who do not wish to have an assisted death are protected from possible coercion, but which can allow those who have a well-considered and persistent desire for medically assistance to die, when faced with incurable suffering, to have the good death they wish for.

Update 24th November 2017: Lord Joffe’s daughter, Deborah, writes about her father’s end of life.

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House Of Lords Debate on Assisted Dying

On 6th March 2017 the House of Lords held a short debate on Assisted Dying “To ask Her Majesty’s Government what assessment they have made of recent legislation on assisted dying in North America; and whether those laws provide an appropriate basis for legislation in England and Wales.”

The transcript reveals the continuing debate along well-worn lines. Those in favour of a change in the law in the UK describe the recent changes in legislation in Canada, California and Colorado as indicating a “tide of history” which will sooner or later reach the UK.  Those opposed were concerned about inadequate safeguards and the possibility of future extensions of an initial law permitting assisted dying.

In his summing up, the Advocate-General for Scotland (Lord Keen of Elie) makes some helpful observations. Importantly he points out something that is often overlooked in media headlines: the two sides of the debate have much in common. We all want to ensure people have access to high quality compassionate care at the end of their lives. Further, we all want to protect those who are vulnerable from coercion. He identifies the central question as “whether a blanket ban on assisting suicide is a necessary and proportionate way of achieving this.” MDMD clearly think not. True compassion, for some people, in some situations, means medical assistance to end their life at a time of their choosing, when their quality of life is incurably below the level they can accept. To deny people this opportunity is a cruelty that vulnerable people should be protected from as much as from any coercion to request it.

Regarding a change in the law, Lord Keen cautions that there are cultural differences between countries which mean that we cannot simply adopt a law from elsewhere. He also echoes concerns about the possibility of laws being modified in future. He points out the need for very carefully crafted safeguards, while accepting that no safeguards could eliminate risk completely. “The real question is: how much risk to the vulnerable is acceptable in order not to deny those who would genuinely wish to be assisted to commit suicide the opportunity of an assisted death?”

How do we move the debate forward? MDMD believes that some new thinking and proposals are necessary. Some important suggestions we offer are:

  • The six month criterion has serious problems both of diagnosis, but also for people with incurable, often slowly degenerative, diseases who suffer intolerable conditions for much longer. Dementia is an important example. It is now the most common cause of death in England and Wales. People with a dementia diagnosis are faced with horrible alternatives before they lose their mental capacity: ending their life in Switzerland like Ron Hall; ending their life themselves like senior judge Sir Nicholas Wall, the former President of the Family Division; or being subjected, like Joan Cheatle, to the living nightmare of one’s self withering away uncontrollably with loss of all shreds of dignity, even though she had excellent specialist care.Despite these concerns, the six-month criterion may turn out to be an important initial safeguard – but it should be recognised for what it is, the first step in a cautious, incremental approach towards more compassionate, but still safe, solutions. Many changes in law have been introduced step-by-step – our right to the vote being the most obvious example.
  • Currently proposed safeguards are not considered adequate by many opponents. We should work actively to improve this. MDMD’s suggestion of extending the concept of an advance decision could be an important contribution here. Under our proposal, vulnerable people who had not previously made a formal statement of their wish for the option of an assisted death, made at a time when there were no questions about their “vulnerability”, would have precisely the same protection as at present. Yet those who could point to evidence of their long held wish, or who were very clearly not vulnerable even if they had recently changed their mind (like Lord Rix), would be allowed assistance to have the good death they desire.
  • More detailed proposals are needed of how exactly doctors and courts could establish that someone was making their request freely. There are already many healthcare professionals experienced in interviewing people, especially vulnerable people, to ascertain their wishes, to test the reasons for those wishes, and their consistency. Perhaps such an expert interview should be compulsory and recorded on video for consideration by others involved in the authorisation process.
  • The question of “how much risk to the vulnerable is acceptable” needs to be balanced by the question “how much suffering should be inflicted on the incurably ill by refusing their well considered requests for an assisted death?”. The best estimates, from those jurisdictions where assisted dying is legal, suggest that the risk to vulnerable people is very small indeed – there is very little evidence of coercion – though admittedly it could be hard to trace. We should perhaps do more work to quantify the amount of incurable suffering being experienced by those who are refused the life ending assistance they desire – but it is very difficult to do so. We have estimates of how many people choose to end their life in Switzerland (47 people went to Dignitas in 2016 from Great Britain). We can only estimate how many people take their own lives due to incurable suffering. Dignity in Dying estimate 300 per year. This is a helpful statistic, but it is likely to be a significant underestimate as they only include those suicides where “terminal illness” is mentioned, and their data will exclude many situations where someone has voluntarily stopped eating and drinking to hasten their death, as this is unlikely to be recorded as suicide. Anecdotally we hear of many more cases of people suffering against their will at the end of life, where death eventually comes as a relief.

MDMD encourages and participates in constructive discussion between all parties. There is clearly much more work to be done to produce a more acceptable proposal for how the law should change in this country.

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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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Lord Rix changes his mind in support of legalised euthanasia

In 2006 Lord Rix, who was president of Mencap, voted against an assisted dying bill in the House of Lords. Now, aged 92, and terminally ill himself, he has changed his mind, and has called on the speaker of the House of Lords to open the debate again: “I can only ask that once again the House of Lords brings the UK up to date by allowing legal euthanasia after all other avenues have been pursued. Please raise the question again in the House of Lords so that people like me do not continue to suffer untold misery for want of a kind alternative.”

What changed his mind? “As a dying man, who has been dying now for several weeks, I am only too conscious that the laws of this country make it impossible for people like me to be helped on their way, even though the family is supportive of this position and everything that needs to be done has been dealt with. Unhappily, my body seems to be constructed in such a way that it keeps me alive in great discomfort when all I want is to be allowed to slip into a sleep, peacefully, legally and without any threat to the medical or nursing profession. I am sure there are many others like me who having finished with life wish their life to finish.”

Daily Telegraph Report

Daily Mail Report

His phrase referring to people like him “who having finished with life wish their life to finish” is a clear example of the MDMD description of a completed life.

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House of Commons Rejects Assisted Dying Bill

On 11th Sept 2015 MPs rejected an Assisted Dying Bill proposed by Rob Marris MP. The Bill would have permitted assisted suicide for people who requested it if they were suffering from a terminal illness and had a life expectancy of 6 months or less.

For more details see the bbc news report.

The transcript of the House of Commons debate can be read here and video watched here.

While MDMD are disappointed that the Bill was defeated, we believe that the Bill should not have been limited to those with a 6 month prognosis (see our reasons here). Such a limited Bill could only ever be seen by many people as a first step towards allowing them the good death they would like.

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