Scotland

Renewed campaign to legalise assisted dying in Scotland.

A major push is being made to change the law in Scotland, led by Dignity in Dying (Scotland).  MDMD strongly supports this. Although their campaign is limited to the “terminally ill”, we note that Scotland now has a broader definition of terminal illness that no longer includes the six month life expectancy criterion. We hope that the campaign in Scotland provides the first step towards a law that will help those who are incurably suffering, like Tony Nicklinson, Debbie Purdy and Omid, in additional to the “terminally ill”.

As part of the campaign, in this BBC story, Kay Smith, who is suffering from various untreatable conditions which are expected to result in a painful death, describes how she wants an assisted death. As a former palliative care nurse, now in palliative care herself, she knows better than most the limits of what palliative care can offer.

This article and others quote the results of a Populus survey which shows that 87% of respondents in Scotland back a change in law for those who are terminally ill with 6 months or less to live. Interestingly the figures quoted for Scotland are a little higher than the 84% quoted for Great Britain. The new poll shows increased support than in polls a few years ago. These results are in accordance with MDMD’s recent poll, though the questions are not directly comparable.

The MDMD poll compared acceptability of various forms of assisted dying. The greatest level of support was for terminal illness in the broad (Scottish) sense of an illness which will eventually cause death, rather than limited to those with a life expectancy of 6 months or less. The MDMD poll found 93% considered medical assistance to die acceptable in at least some circumstances for someone who was terminally ill in this broad sense, compared to 88% when the 6-month criterion for terminal illness was included.

Perhaps the difference in Scotland can be explained as the definition of “terminal illness” in Scotland no longer includes the 6-month criterion, following a change in law instigated by Scottish doctors a year ago. This is very welcome news as it implies that the Scottish campaign for a law permitting assisted dying for the “terminally ill” will use the broader criterion.

MDMD is pleased that there are now discussions to try to broaden the terminal illness definition in England and Wales too. We strongly support this move and hope that it results in England and Wales following Scotland’s lead.

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Scottish Parliament removes time limit in definition of “terminally ill”

MDMD are delighted to learn that the Scottish parliament has removed any time limit from its definition of “terminally ill” in their Social Security (Scotland) Act 2018.  The story was reported by the BBC and the Guardian.

The Guardian article states “There were a number of significant last-minute amendments to the legislation, including the removal of any time limit on terminal illness. It was brought by the social security minister, Jeane Freeman, after senior medical professionals called for its inclusion. Current rules for disability benefits and universal credit say a patient must have six months or less to live before their illness is classed as terminal.”

In the debates over right-to-die legislation, “terminal illness” is also one of the possible criteria that has been considered, and is used in some jurisdictions such as Oregon and other US states where assisted dying is legal, (but not closer to home in Switzerland, the Netherlands or Belgium). In the right-to-die context in the UK the medical community have argued that a 6-month criterion is impossible for them to accurately determine, and would make the working of right-to-die legislation impossible for them. It is good to see this medical argument now being applied to other uses of the 6-month criterion, if only limited to Scotland at present.

The relevant wording from the Scottish Act is “… an individual is to be regarded as having a terminal illness for the purpose of determining entitlement to disability assistance if, having had regard to [guidelines issued by the Chief Medical Officer], it is the clinical judgement of a registered medical practitioner that the individual has a progressive disease that can reasonably be expected to cause the individual’s death.”

Given that dementia is the leading cause of death in England and Wales, it seems clear that dementia should now qualify as a “terminal illness” in Scotland, for this legislation, at least by the time that it seriously impacts a person’s ability to live independently. MDMD has always argued that dementia should be considered an acceptable reason for requesting a medically assisted suicide, by someone who still retains mental capacity, and that consequently any six-month criterion is too restrictive. The change in interpretation of “terminally ill” in Scotland is a small sign of movement towards a better understanding of this issue. We hope that in England and Wales, senior medical professionals will follow their Scottish counterparts in causing a similar redefinition.

We hope that those organisations campaigning for a change in the law on assisted dying in Scotland will now broaden their campaign to fully embrace the new Scottish definition of “terminally ill”, if their policy does not currently endorse this. This would help gain the support from those in the medical community in Scotland who argued for the redefinition.

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Scottish Parliament’s Cross-Party Group on End of Life Choices meeting

MDMD Associate Coordinator Colin Brewer represented MDMD at the Scottish Parliament’s Cross-Party Group on End of Life Choices. Here is his report…

We heard a good presentation by Dignity in Dying’s Scottish organiser on their excellent recent survey of people from Britain who approached Dignitas for assistance and the financial, legal and bureaucratic obstacles that some of them encountered in the process. (I presented my own, more modest, research in the same field at Euthanasia2016 – the international conference organised by the World Federation of Right to Die Societies in Amsterdam two years ago.) When I mentioned the importance of including early dementia among other slowly progressive conditions that should at least be discussed in any legislative proposals, the reaction was interesting. Several people applauded or nodded vigorous approval and some later spoke in favour of the idea. Others, while apparently not unsympathetic, were worried that even mentioning dementia would make legislation even more difficult to pass. I noted that in Oregon and Canada, dementia is now up for discussion as an approved addition to the present categories. MDMD looks forward to contributing to Westminster’s equivalent group in the near future.

MDMD believe discussion of dementia is particularly important now that it is the largest cause of death in England and Wales, and many more people die with it, rather than of it.

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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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