MS

The Legacy of Debbie Purdy – Radio 4 programme

BBC Radio 4 recently broadcast a 2 part programme about Debbie Purdy. The first part is a dramatisation of the story of how Debbie took her legal case to the House of Lords and as a result caused the director of public prosecutions, (DPP), to issue guidelines clarifying the facts to be considered when deciding whether someone should be prosecuted for assisting suicide. Debbie was concerned that her husband might be prosecuted if he helped her to go to Dignitas in Switzerland, where she could have a medically assisted suicide. (The DPP at the time was Keir Starmer, who is now a front bench Labour MP, and shadow Brexit secretary.) It is 10 years ago this year that Debbie won her case.

In the second part of the programme, The Legacy of Debbie Purdy, Deborah Bowman discusses the issues raised by Debbie’s case with her husband, Omar Puente, her solicitor, Saimo Chahal, and Lord Falconer, the barrister and Labour peer who campaigned on the issue in Parliament.

In recalling the day of the House of Lords ruling on the Purdy case, Lord Falconer said, ‘What Debbie and Omar achieved was absolutely epochal in relation to the struggle because it forced the government, the DPP, to set out what were the circumstances which would lead you to be prosecuted for helping someone to take their own life and what would be the circumstances that would mean you wouldn’t be prosecuted.‘ The resulting DPP guidelines are available here.

The programme raised the recent case of Geoff Whaley, in which his wife, Ann, was interviewed by the police under caution, prior to assisting Geoff to go to Switzerland for a medically assisted death there. The presenter asked ‘Why are friends and family still vulnerable to investigation and potential prosecution given Debbie’s case?

Lord Falconer explained that ‘there are still lots of problems because they are dependent on the discretion of the DPP. He decides if there is any bad motivation on the part of the family or friends who helped their loved one take their own life.

Asked why his attempts to change the law failed when Debbie Purdy’s case was won, Lord Falconer went on to say ‘I think parliament is totally out of tune with the public’s view… Politicians come into politics to deal with schools and hospitals and issues like that and this is a side issue for them.’

In 2014 Lord Falconer put forward a private member’s Bill in the House of Lords for an assisted dying law along the lines of the Death with Dignity law in Oregon USA. His Bill made significant progress by passing its second reading, but it ran out of time due to the general election of 2015. (Essentially the same Bill was re-introduced in the House of Commons by Rob Marris following the election, but was defeated at its second reading.)

Saimo Chahal, Debbie’s solicitor, went on to represent Tony Nicklinson, who suffered from locked in syndrome. More recently she represented Omid in his legal challenge for assistance to die. She raised the issue of people with degenerative diseases which mean that they would not be helped by the kind of Bill proposed by Lord Falconer as they are not expected to die within six months, but have much longer to suffer. She quoted Lord Neuberger, one of the law lords who ruled in the Nicklinson case, saying surely these people are even more deserving of our sympathy than those who only have a few months to suffer.

Although the Nicklinson and Omid cases failed, the Nicklinson case did help persuade ex Archbishop of Canterbury, Lord Carey to change his view on assisted dying, so that he now supports assisted dying for cases such as these.

Lord Falconer was asked why he proposed a law that would only help those with six months or less to live. He replied ‘Authorising people to assist somebody to die should be limited to those who are dying already. I think that by and large being opposed to helping people to commit suicide is the right policy position for the state to be in, however if you are dying you should have choices as to how you die.

The presenter pointed out the medical difficulties of making an accurate life-expectancy prognosis, which Lord Falconer accepted, but said that doctors had to make difficult decisions all the time.

Saimo Chahal agreed with Lord Falconer that there was an underlying principle of personal autonomy over end of life wishes which should be respected, but she said ‘I personally cannot understand why people who have 6 months or less should be helped but not people who have a degenerative condition which is life shortening, who have years and years of pain and agony ahead of them. It seems to me that those very people deserve to have autonomy over when they bring their lives to an end.

Lord Falconer responded that ‘the problem is that if suffering becomes the test, you are asking the law to make quite difficult decisions’. He went on to highlight the difficulties with people who are suffering from extreme depression.

Clearly there are difficult decisions to be made – both medical and legal. What seems to be missing is agreed guidelines to tackle them both, while providing adequate protection from those who may be coerced to act against their “true” wishes. It is unfortunate that the programme was not able to explore this point further. It is instructive, for example, to compare the existing right of someone to refuse life-sustaining treatment, or to refuse food and liquid, in order to end their life, but the absence of a right to request medical assistance to die when faced with incurable suffering. Two recent cases highlight this issue, both with motor neurone disease. John King ended his life by removing his ventilator, but Noel Conway’s legal challenge was refused, partly because he has this option of removing his ventilator which he could choose. We should note that the criteria which separate these very similar cases do not involve issues of the risk of coercion, nor any estimate of life-expectancy. Surely it cannot be acceptable to force people to suffer from incurable conditions against their will when they are not dependent on life-sustaining treatment which they could refuse, or where such refusal of treatment could lead to a protracted and unpleasant death.

One thing that wasn’t pointed out was that in her final interview Debbie’s views on the six month issue were very clear: ‘I think Lord Falconer, in saying that if you’re within the last six months of your life, misses the point that Tony Nicklinson, myself, Paul Lamb – the people whose cases have all been public – all have to face decades of a life that we don’t consider acceptable, and that is the thing I find hardest.‘ Saimo Chahal was clearly echoing Debbie’s point of view.

Despite these limitations, the programmes are both fascinating. It is particularly helpful to hear a discussion on the issue of the six month criterion – something that MDMD has strong views on.

The progammes are available for a limited time here:

https://www.bbc.co.uk/sounds/play/m0002r4f

https://www.bbc.co.uk/sounds/play/m0002r4h

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MS Sufferer Colin Campbell’s deferred assisted death raises important questions about help for the disabled

In April 2017 MS sufferer Colin Campbell publicly stated his intention to end his life in Switzerland on June 15th 2017. Due to the intervention of fellow MS sufferer Rona Tynan, and the alternatives and assistance she helped him consider, Colin has deferred his appointment in Switzerland.

In October 2017 a BBC story and podcast discusses why Colin changed his mind. Colin is clear that he has deferred his Swiss appointment, rather than cancelled it, and Rona agrees that she supports assisted dying and respects Colin’s decision. One of the participants in the discussion was Mik Scarlet, a member of Not Dead Yet UK, a group of disabled people who oppose assisted suicide. Mik makes some very important points. “You can’t say you’ve made an informed decision if you don’t know about scooters or care plans.” He goes on to say “I do believe that eventually we will get assisted dying”, but he points out that this should not be permitted until all possible alternatives have been considered – including the services which may be able to make someone’s quality of life acceptable to them again, and the support to help them adjust to changed circumstances. He continues, “…then when people do get to the point when they want to die they got there at a point where it is real. It is not because they are not supported and they are not being helped.”

MDMD agrees with Mik on this. One of the problems with the legislation as it is today, is that people are taking their own life, either on their own, or with medical help in Switzerland, without necessarily having the full support that could make their quality of life acceptable to them again. Colin Campbell’s case suggests that many others may be suffering unnecessarily due to lack of access to available services.

Exactly what level of support is available, at the time it is needed, is of course down to politicians, social services, NICE, and ultimately to us, the voters. Demand is always likely to be higher than the state can provide. Whether the support available at the time it is needed is sufficient for the individual concerned, is a personal decision. But until there is a change in the law and people are encouraged to seek help before ending their life, tragic early deaths are bound to occur out of ignorance of the help available.

Importantly, when accepting help, people need to have the confidence that their end of life wishes will be respected in future – even if for them, a good death, means a medically assisted one. Without a change in the law, there is a risk that in accepting help, the ability to end one’s life unaided will be lost. This can give rise to a real fear of being trapped in a system that can’t help in the way the person wishes. This is another reason why today some people, even when well informed of available options, may choose to end their life too soon, while they still can, knowing that no one can legally help them later.

Where MDMD and some of those opposed to a change in the law may differ, is that to MDMD it is not acceptable for people suffering to be denied a good death now, in the hope of better care services at some distant unspecified point in the future, long after they have died unpleasantly. People need to make decisions about their lives, and their deaths, now, in the situations they find themselves – having fully considered all the options currently available. A well designed assisted dying law and activation procedure can help ensure that people who choose an assisted death do make a well informed choice. The present law does not do that and needs to be changed. With such a law in place, no one need suffer against their will. As care and support for incurably ill and dying people then continues to improve, we can anticipate that this could cause some people to delay or not request the assisted dying option.

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MS Sufferer heading to Switzerland while he still can

The Scottish Sun reports the case of Colin Campbell.

Colin suffers from the Primary Progressive form of MS. He intends to go to Lifecircle in Basle to end his life on 15th June while he still can. He told MDMD “I qualify everything I say with ‘intend’ as my health could fail totally at any time.” He has lived with the gradually worsening condition since 1995, but his quality of life is now deteriorating below the limit he can tolerate, and he needs to take action now, while he is still physically able to.

Colin has bravely chosen to make his decision public in advance, to help demonstrate why a change in the law is necessary. Why should people like him have to go to Switzerland to find compassionate doctors who are legally able to help him have the good death he wishes? We need to provide this in the UK, for mentally competent adults who have made their own, settled choice in the face of incurable, unacceptably low quality of life.

Cameras will record Colin on his journey. Andi Reiss is the independent documentary film maker who is following Colin’s case as part of a larger project looking in detail at the issues around assisted dying.

Colin has told MDMD that his doctors have not discussed his life expectancy with him. The Multiple Sclerosis Trust clearly points out that MS is not a terminal illness. There appears to be no prognosis of six months or less. Given this, it is interesting that Ally Thomson, director for Dignity in Dying Scotland is quoted in the Scottish Sun article as saying “It is a tragic and unacceptable reality that seriously ill people like Colin Campbell feel they have no other choice but to spend their final days traveling hundreds of miles to Switzerland in order to have the dignified death they desire.” MDMD fully agree with her on this. Unfortunately she doesn’t go on to say what option she would like to see for people like Colin. The legislation Dignity in Dying have been proposing would not help him, as his life expectancy is not less than 6 months.  Perhaps this case will help Dignity in Dying see the need to broaden their policy to show more compassion to people like Colin (and Omid), instead of denying them the help they need and thereby prolonging their suffering unacceptably. MDMD certainly hopes so.

MDMD commend Colin for his bravery in being so public at this difficult time. We respect his choice and wish him well in the course he is choosing.

Update October 2017: Colin deferred his decision to end his life in Switzerland. See the story here.

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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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