Advance Decisions

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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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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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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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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