Personal Stories

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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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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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Man shot wife with dementia in care home ‘to end suffering’ – BBC News

An elderly man told care home staff his dementia patient wife “had suffered enough” after shooting her at point blank range, a court hears.

Source: Man shot wife with dementia in care home ‘to end suffering’ – BBC News

This story is a challenge to the DPP guidelines. From the details available it appears that the man was acting out of compassion. Did his wife previously ask him to help end her life? Unless she left a written statement there may be no evidence. The moral is surely that if you want someone to help end your life in the future when you feel your quality of life is permanently below the level you wish to accept you should leave a written statement to that effect. It may help a compassionate relative who helps you to die, defend themselves against laws which may otherwise punish them for their compassion.

A more humane legal system, as available in some European countries, would permit someone with dementia to request assisted suicide or euthanasia in the earlier stages of dementia, before mental competence has been lost. That way there is no doubt of the person’s intentions, and they are not dependent on someone else carrying out their instructions to end their life to relieve their suffering.

An assisted dying law which is restricted to those who are terminally ill with a prognosis of 6 months or less (as proposed by Dignity in Dying and rejected by MPs) would not help in situations like this. That’s one reason why it is the wrong approach for this country.

Update: The Hereford Times reports that at the trial it transpired that Mr King was himself suffering from dementia. He was sentenced to 6 years for manslaughter to be served in a psychiatric hospital. The judge said “As you will know, there’s no evidence that she was in pain or suffering any more than anyone else who has succumbed to dementia. This was not a mercy killing. Rather, it was a killing that occurred at a time when the experts agree that you were suffering from dementia causing an abnormality of your mental functions.”

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Couple in joint suicide pact to avoid going into care

The Daily Telegraph reports the case of a Devon couple in their ’80s who successfully carried out a joint suicide. From the article it appears that this was a rational, well thought out, end of life choice. However, it is unfortunate that this couple needed to end their lives in this way. Perhaps, with more compassionate and flexible legislation they might have been able to have a better death. In particular:

  • Saying goodbye to their relatives and friends.
  • Avoiding the secrecy and risk of failure of their plans.
  • Delaying their death in the knowledge that there would be medical help to assist in safely and painlessly ending their lives when they felt their quality of life was permanently below the level they wished to accept.
  • Avoiding the shock and distress they undoubtedly caused to their cleaner who discovered their dead bodies, and their family who were unprepared for their action.
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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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