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Over 100 Minimally conscious patients

A BBC investigation attempted to find out how many minimally conscious patients were being kept alive in the UK. All the UK health authorities were asked,  but only about one quarter were able to provide data. Those that did revealed 105 cases. Given the poor response, it seems reasonable to estimate that the total number may be around 400. [But see update below.] Many of the patients had been minimally conscious for 6 months or more, with one being in that state for 20 years.

When should life support be turned off? It is difficult to say, depending on the circumstances. People who have written an Advance Decision can request life support to be turned off if they wish, subject to conditions they specify, should they ever be in a situation where they have lost mental capacity, such as a minimally conscious state. A correctly written advance decision is a legally binding refusal of treatment under certain conditions at some future time when a person does not have mental capacity to make the decision. It must be written when the author has mental capacity to make that decision.

In the absence of a valid Advance Decision, the Court of Protection has to be asked to act in the patient’s best interests to decide whether life support should be turned off.   Usually such cases are brought by the medical authorities. However in the case of Paul Briggs the case was brought by the family who did not want to see him suffer further. The medical authority opposed the family wish. However, the judge decided in favour of the family.

MDMD strongly recommend that everyone completes an Advance Decision, specifying their wishes should they be unable to make decisions in the future. Copies should be given to next of kin, those likely to find you if you fall ill at home, and your GP. This applies to everyone regardless of age, or whether you agree with MDMD’s objectives. Anyone could be a road accident victim, for example, at any time.

Update 16th January 2017

Prof. Celia Kitzinger, co-director of the Coma and Disorders of Consciousness Research Centre, has pointed out that the BBC estimate is a gross under-estimate. According to the Parliamentary Office of Science and Technology there are between 4,000-16,000 patients in VS [Vegetative States], plus 3x as many in MCS [Minimally Conscious States] i.e. up to 48,000 in MCS (Source: POSTNote2015 based on extrapolation from nos in UK nursing homes)

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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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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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Why everyone should write an Advance Decision – the case of Paul Briggs

The case of Paul Briggs, reported in the Daily Telegraph and other papers, highlights why everyone should write an Advance Decision (AD) to refuse medical treatment in case they are ever in a situation where they would wish to refuse treatment, but are unable to speak for themselves. Mr Briggs situation shows how this could happen to anyone at anytime. ADs are not just for elderly people whose death in imminent.

PC Paul Briggs (43) was involved in a road accident 17 months ago and is in a permanent vegetative state. The Telegraph article reports that his wife believes that the withdrawal of treatment is in Paul’s best interests given his previously expressed wishes, injuries and his current condition and prognosis. The doctors treating him think differently. The case is going to court.

If Mr Briggs had written an AD the situation would be easier, though still tragic. For example, his AD might have said something to the effect that if he was in a coma or vegetative state for over 6 months, with little prospect of him regaining the minimum quality of life he would wish for, then he refuses all treatment aimed at prolonging his life, including artificial breathing, feeding, and hydration. He could have given his own examples of what constituted a minimum acceptable quality of life for him. This would help ensure he would be allowed to die.

An AD like this is not only legally binding on medical staff, but more importantly it is also easier for both relatives and medical staff, as they have a clear record of the patients wishes to guide their decisions, and so are much more likely to reach agreement and avoid the situation of Mr Briggs where his wife is having to pursue her case through the courts. Everyone – medics and relatives alike – I’m sure would want to act in Mr Briggs’ best interests, but without a record of his wishes it can be difficult to agree on what that is.

For more information on Advance Decisions, end of life planning and how to write yours, see this page, and the recent MDMD lecture given by Prof Celia Kitzinger, a leading expert in ADs.

Please encourage your friends and family to complete their ADs.

It is ironic that only 4% of people have written ADs – an existing legal right to give people some control over what happens to them if they loose mental capacity – whereas over 80% are in favour of some form of assisted dying. Advance Decisions will still be required even if assisted dying is legalised as they apply when a person has lost mental capacity, whereas it is highly likely that legalised assisted dying would only be permissible when a person still has the mental capacity to request that option. An Advance Decision would have helped Mr Briggs, Assisted Dying legislation would not.

UPDATE 20th December 2016: Court finds in favour of family

UPDATE 5th July 2017: The implications of the court case are discussed in a paper in the Journal of Medical Ethics July 2017 – Volume 43 – 7 : When ‘Sanctity of Life’ and ‘Self-Determination’ clash: Briggs versus Briggs [2016] EWCOP 53 – implications for policy and practice by Jenny Kitzinger, Celia Kitzinger and Jakki Cowley

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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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Protecting Vulnerable People

We were interested to see an article on the Christian Institute website about MDMD, claiming that we “lobby for legal protections to be removed from vulnerable people”. Nothing could be further from the truth. MDMD is concerned that any right-to-die legislation should fully protect vulnerable people. We suggest that the author read our proposals for extending advanced decisions which would allow assisted dying for those who wish it, but still provide vulnerable people with the same protection as they have today. This is much stronger protection for vulnerable people than previous proposals for right-to-die legislation and deserves to be seriously considered.

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How long do we really want to live for?

In an interesting BBC Website article, health correspondent Nick Triggle asks this important question. The article usefully differentiates between “life expectancy” and “healthy life expectancy”. It points out that many people answer the question by saying “As long as I have my health”.

The question presupposes that we have a choice as to when to die. End of life choice, and support in end of life decisions is woefully inadequate in the UK – and will continue to be until there is the option of a medically assisted suicide or euthanasia, in the context of supportive palliative care for all. Only then will some people be able to have the “good death” they would hope for.

In answering the question “How long do I really want to live for”, the response “as long as I have my health” is rather simplistic. How much “health” do you need to sustain a quality of life you feel is worth living? The answer to that is personal, depending on many factors. The important point is that for some people a point is reached where incurably poor health, combined with other factors, leads them to conclude that their quality of life is permanently below the level they are prepared to accept. They feel their life is complete and are ready to die. Some take the final logical step and rationally decide to end their life.

MDMD campaign for changes in the law and medical practice so that people who feel this way can be supported, first by care, appropriate to the individual, to ensure their quality of life is acceptable to them for as long as possible; then by counselling to ensure their end of life decision is their own, persistent, mentally competent wish; and finally, if it is the person’s persistent wish, by legal medical assistance to die. When this is available, the question “How long do we really want to live for?” can be answered much more meaningfully.

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MDMD Website launched

Today MDMD formally launches its website. Following a press release and interviews, an article in the Sunday Times 9th October describes MDMD’s main objectives under the headline “Non terminally ill seek right to die”, including a mention of our suggestion of an extended advance decision. and our reasons for believing that an assisted dying law restricted to those who are within 6 months on dying is not the right approach for the UK.

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Archbishop Desmond Tutu: I want the option of an assisted death

On his 85th birthday Archbishop Desmond Tutu wrote an opinion piece in the Washington Post where he goes further than his previous position of supporting assisted dying. He now states that when his time comes, he would like this option for himself.

The article includes many important quotes, perhaps the most significant, given his position, is:

“In refusing dying people the right to die with dignity, we fail to demonstrate the compassion that lies at the heart of Christian values.”

It is interesting that Archbishop Tutu manages to reconcile his belief in the sanctity of life with his call for legalised assisted dying, and with his personal wish for the option of an assisted death. MDMD hope that other faith leaders will follow the example set by Archbishop Tutu and Lord Carey in publicly supporting assisted dying, and thereby demonstrating compassion for those at the end of life, rather than perpetuating unnecessary, unwanted, suffering.

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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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