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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