Friday November 29th 2024
This View has been written by Midlothian MP, Kirsty McNeill
Dear Midlothian,
I am writing to you today about how I will be voting on the Terminally Ill Adults (End of Life) Bill. This is what is called a ‘free’ or conscience vote, meaning individual members of parliament are not subject to any ‘party line’ on the topic and can vote entirely in line with their own views about what is best for the country.
Exercising judgement on a moral topic of this magnitude is a responsibility I have taken very seriously. I have gratefully consumed evidence and perspectives from so many organisations and individuals from beyond Midlothian and I would like to put on record my thanks to them all.
It is, however, to you the people of Midlothian that I am addressing this letter as I want you to understand what considerations have weighed most heavily on me in thinking about this vote. What follows is lengthy. That is because this has been a very finely balanced decision for me and I feel it is important to share with you not only which way I am voting but why.
I am hugely grateful to those of you who have written to me or attended one of our local community engagement sessions. I appreciate the time you have taken to suggest things I should read, watch or listen to and how thoughtful and thorough so many of you have been in explaining what has brought you to the conclusions you have reached. I feel especially privileged to have heard your stories of loss and I am holding those of you who are grieving particularly close to my heart today. Anyone who has ever lost someone they love knows that you do not “move on”. I dearly hope, however, that you might “move forward” and I will be willing you on each step along the hard road to come.
My rationale for listening so deeply to constituents’ views is not because I wanted to outsource my decision to you. Instead, I have sought to consult and read widely because there are so many competing moral claims and diverging expert views. I have wanted to satisfy myself that I have tested my premises and intuitions thoroughly. There is nobody better to do that with than the people who sent me to parliament.
I do not expect everyone to agree with either my decision or my reasoning but I do hope, in setting it out, we can understand each other a little more. The ability to disagree well, recognising the humanity of those of different perspectives and the strength and legitimacy of their arguments is, in my view, the single most important skill we must develop in our democracy. That spirit was much in evidence in our discussions in Midlothian. The sensitivity and care with which people have debated some of the most fundamental questions about what it is to be human have been extraordinarily moving and will, I hope, continue to characterise our deliberations in future.
My vote will be cast in favour of the Terminally Ill Adults (End of Life) Bill at its Second Reading.
Let me explain why.
Questions around choice and coercion
The most difficult part of this decision has been determining the extent to which choices at the end of life can ever be, or are likely to be, truly free.
My starting point on this has been that to want the ability to make significant choices about one’s own life is a legitimate desire. It is one that should be facilitated by public policy unless there is a risk of substantial harm to others or good reason to believe that choices are being made under such a degree of pressure that they cannot really be called ‘free’.
Many of the people who have told me about their opposition to this bill have given powerful accounts of why they themselves would never choose an assisted death or how they have supported loved ones in their final days who would have never chosen this for themselves.
These have been very moving discussions about people’s desire to squeeze every last moment out of life, regardless of the suffering they might need to endure. I have been enormously inspired when reflecting on those conversations. They do not, in my view, mean the choice should be denied to others who might place a different premium on their life’s ultimate duration, preferring instead to focus on its remaining quality, or who might have a different view of what is right or moral in their position. That strikes me as a decision every terminally ill person should in principle be able to make for themselves, given that it is not a decision about whether to die but instead about when and how. This is the argument to which I have given most weight.
The point that has given me pause here is the idea that this choice may not, in reality, be truly free. There are two distinct elements to this argument.
The first concerns direct coercion, where someone who stands to gain from a loved one’s passing might apply pressure on them to consider assisted dying. The bill specifies a custodial sentence of up to 14 years for anyone who does pressure someone and that is to some extent a reassuring safeguard. But the point I lingered longest over is whether I could be confident that our society is good at identifying coercion in other instances. It is, after all, only since 2015 that ‘coercive or controlling behaviour’ has been recognised as a specific offence in instances of domestic abuse. This remains a real concern for me but one that I have to weigh against the alternative of maintaining the status quo: currently there are no safeguards at all against coercion in families when terminally ill people end up attempting to take their own life.
At the moment, over 600 terminally ill people take their own lives each year. In these cases, a criminal investigation after the fact would be needed to establish coercion, but by then it is too late. Under the proposals for assisted dying, three professionals (two doctors and a judge) will be specifically directed to be vigilant against the risk of coercion. Doctors and judges are already routinely required to assess the likelihood or presence of coercion in other instances (including in discussions around ending life-sustaining care in the case of doctors) and they seem to me to be well qualified to take on this new responsibility. Introducing a system with multiple, clear, and strict legal safeguards, overseen by independent professionals and the courts, in my view does not increase the risk of coercion.
The second concerns a wider question of whether people will feel pressurised by society at large if assisted dying creates a new climate of opinion that some people are, per the name of one BBC Documentary, “better off dead”.
This argument tends to be about people not wishing to feel like a burden. I take this concern seriously but have decided that it ultimately rests on an elision between quality of life and the value of life. I believe all lives are of infinite value and I believe that is a universal principle held by everyone on all sides of this debate and indeed by those who want this choice to be available to them. We need to be careful, though, not to elide quality of life and the value of life. Every life ends: and when individuals look for help in ending their own, they are making a judgment on the level of suffering they believe that they are able to endure at the end of their life. Seeking this for oneself does not imply anything at all about the value or indeed quality of the lives of others. The people who want this option stress their desire for autonomy as individuals.
I do accept that it is possible some people will weigh considerations about the impact of their condition on their families and the NHS when deliberating about their final months. We must do everything we can to prevent that from happening but must also acknowledge that this is also the case currently when people make choices about refusing life-sustaining support.
Questions around vulnerability and values
Before going further into how my own values have shaped my thinking I want to be crystal clear about one thing: I feel very privileged to have heard from so many people in Midlothian about how your own values, including those informed by religious faith, have shaped your perspectives.
Some of you expressed to me an anxiety that your strong views around this bill would be discounted if religiously motivated. They have not been and I welcome ongoing dialogue with faith communities on this question as well as on the causes about which we are all so passionate: fighting poverty, protecting our beautiful planet and supporting those who struggle the most with life’s cruelties and injustices.
Many opponents of the bill have rightly asked MPs to be particularly attentive to any differential impacts of the bill on people who are vulnerable or marginalised. Just as I believe all lives are of infinite value, all lives are of equal value: indeed that is the very belief that brought me into politics. I have been particularly alive, therefore, to the worry expressed by some disabled people that the discussion around assisted dying could at best be a manifestation of and at worst an entrenchment of ableism.
It is very clear that the rights of disabled people are routinely violated and I think I understand – as best as someone without a current disability can – why some disabled people are so opposed to these proposals. This is one of the reasons I have rejected the language of allowing for ‘dignity’ in death and instead feel drawn to the idea of choice and autonomy at the end of life. I agree with those advocates who are disturbed by the idea that requiring or receiving personal care means losing dignity. We must guard against any suggestion that personal care compromises dignity when it can be given with a tenderness that, far from compromising, enhances the humanity of those who both offer and receive it.
I have listened to and reflected on the concern that disabled people could be brought within the scope of assisted dying provisions. I would be resolutely opposed to that and am reassured by the fact that people living with a disability or mental ill health are, under the terms of this bill, expressly deemed ineligible for assisted dying if their only grounds for application would be their disability or mental health condition.
A number of people who contacted me in support of the bill have drawn my attention to the polling around public attitudes. A question of this complexity is not one that can or should be decided by the numbers of people on one side or the other. I have therefore given weight to polling only in two instances.
The first is in relation to the views of disabled people. I have dug into the evidence around that and have been reassured that support for assisted dying for the terminally ill is actually higher among disabled people than the wider population.
The second area where I have found polling illuminating is the much stronger (some eighteen points higher) support for assisted dying among those who have lost a parent in the last five years. I give weight to that because I believe in listening closely to those with lived experience. Many of those who talked to me about the deaths of loved ones talked of their intense distress at being unable to help a dying family member who had asked for ‘peace’. In contrast, some others described the comfort they had drawn from being present at a chosen end in other countries where assisted dying is legal, where a loved one had been able to say goodbye at a time of their choosing, surrounded by the people and things that had brought them joy and meaning in life.
The status quo
Some of the most persuasive representations I have received have been around the inadequacies of the status quo.
The most important of these from my point of view is the horrifying rate of suicide among the terminally ill. The Office for National Statistics reports that the suicide rate among those diagnosed with low survival cancers is 2.4 times higher than among others.
I do not think we can tolerate a situation where people take matters into their own hands in this way. I have been asked to consider the potential trauma that might occur if wider family unsuccessfully oppose a loved one’s application for assistance in dying. I appreciate the risk here. We know for certain, though, that the risk of family trauma exists today, as it does for first responders and others at the scene of these tragedies. I hope one point of agreement among proponents and opponents of this bill alike can be around the urgent need for more support for all families touched by suicides, whatever the surrounding circumstances. They too are in my heart today.
The second area is that I am deeply uncomfortable that the decisions governing British people accessing assisted dying are made, in practice, by Swiss lawmakers rather than our own. One British person a week dies at an assisted death clinic in Switzerland and this presents a number of challenges. Only those with the financial means can afford the travel and to pay the fees that membership of these organisations requires. Only those with mobility can do so, and some people are travelling to end their lives earlier than they would otherwise like to because they are worried about becoming too unwell to make the journey. And anyone accompanying a dying person to Switzerland risks a police investigation which, while unlikely, compounds the stress and trauma of an already extraordinarily difficult time for families.
These, of course, are all arguments in favour of a bill, not necessarily in favour of this bill. Plenty of opponents of the bill have rightly said that any vote on legislation, whether at Second Reading or at Third, is a vote on the law as it is proposed and not on an abstract principle. If I felt strongly that this bill as drafted did not have sufficient safeguards, even if persuaded by the ‘in principle’ case for assisted dying, I would not be voting for it. I am, however, satisfied by the safeguards in this bill and have not heard arguments that I consider on balance persuasive about why I should not be.
Strong safeguards
The bill’s proposer, Kim Leadbeater MP, has said multiple times that she believes this bill to contain the strongest safeguards anywhere in the world. In all of my reading I have not come across an opponent who disagrees. I know there are some opponents who do not believe it is possible to provide sufficient safeguards: that is a legitimate position, but it is not one that I share.
For an assisted death to occur, two different doctors have to confirm eligibility, which means confirming i) a terminal diagnosis, ii) a six month prognosis for likely death and iii) the capacity to make the decision. Opponents of the bill often cite that medical caution about assisted dying is strongest among those working with the terminally ill. Given that, I don’t think we have reason to believe doctors will be cavalier in making these decisions.
Another risk bill opponents have identified is that of ‘doctor shopping’, whereby people would seek the support of another doctor if initially refused. There are a few things that reassure me in this regard. The first is that for this risk to materialise we have to assume widespread malpractice by doctors, with a high number willing to certify eligibility when there in fact is none. The second is that there is no option for ‘judge shopping’ and the eligibility decision of the two doctors has to be confirmed by a High Court judge. In practice, a person wishing to access assisted dying needs to confirm several times, over several weeks, to several different professionals, that they are clear in their mind about the course they wish to pursue and their eligibility to do so. So many different people would need to collude, over such a sustained period, and avoid detection while they did so, for a person to access assisted dying against their will.
The final element of this consideration is the one that gave me the most pause. Some opponents of the bill have suggested that while the provision of assisted dying need not diminish the quality of palliative care it could dangerously alter its nature. I am grateful for those who have been involved in delivering hospice or palliative care who raised this with me and outlined their worry that this could fundamentally change the nature of the doctor-patient relationship. The explanatory notes published with the bill make provision for a clearly separate service to deal with assisted dying and this strikes me as a sensible way to allay this concern, ensuring as it would that people providing life-sustaining care and people providing assistance to end life are not one and the same.
Allied concerns have been expressed about whether the Mental Capacity Act 2005 is the right legislation to use to make capacity assessments in the case of dying, given that it stipulates that capacity should in general be assumed rather than assessed. But this is already the case now when decisions are made about withdrawing life-sustaining treatment.
Slippery and sticky slopes
Many opponents of the bill have looked at the international evidence and drawn the conclusion that passing any form of assisted dying legislation (even on terms that they might themselves support) leads inevitably to a widening of eligibility onto grounds that they would not support. This “slippery slope” argument has two main strands.
The first is that a general “climate of opinion” in favour of choice could, once legitimised by parliament, gallop towards undesirable destinations. At our constituency events some people worried that “there’s nothing to stop another MP trying to widen the eligibility” and I should repeat in this letter what I said in person then. That is entirely correct: nothing in our system precludes future parliamentary or social activism to change the law. And I agree that the laws passed by our national parliament have a powerful normative and societal effect as well as an obvious legal one. I am alive to those concerns although I do not share them. I think it is the nature of our system that social reforms, once enacted, can be taken further if parliament chooses. But my reading of the international evidence is actually that laws tend not to be radically altered once passed.
The second concern people have around the slippery slope is that judicial activism might end up with the scope of the law being widened considerably without the consent of parliament. My understanding is the European Court of Human Rights (ECHR) has been pretty clear about this: it considers different laws on assisted dying to be well within the margins of legitimate divergence (the so-called “margin of appreciation”) among members.
This means that the ECHR would not intervene to widen those laws.
In none of the 5 ECHR member states with assisted dying laws has eligibility been widened because of a challenge before the ECHR. In none of the 19 Anglophone countries with a law with a terminal illness eligibility has the court widened it. And in every instance where UK courts have been asked to intervene they have ruled that this is a matter for parliament.
As many people have brought to my attention, Canada’s laws have been expanded as a result of judicial intervention. That is because Canada has a Supreme Court more analogous to the American model than our own and their original legislation as drafted was deemed incompatible with the Canadian Charter of Rights and Freedoms. There is no equivalent in this country.
My own reading of the evidence is that our legal and parliamentary systems mean we are more likely to have ‘sticky’ rather than ‘slippery’ slopes in this country. It is currently legal for someone to refuse life-sustaining treatment (like ventilation) or food and water. While it is distressing to think of it in this way, the nature of this decision means we do have to speak plainly: in this country we already allow the terminally ill to starve themselves to death even while in the care of our NHS. In fact, if they wish to die, as matters stand we force the terminally ill to starve themselves to death or to refuse life-sustaining support like ventilation with all the distress that causes both to them and their loved ones. We have been stuck at this position on the slope until now. If we now change the law on assisted dying, we can similarly expect to stick in that new position, rather than that beginning a further slide.
Palliative care: it’s ‘and’, not ‘or’
Everyone – proponents and opponents of this bill alike – would like to see properly funded, universally accessible palliative care. This is sometimes positioned as in opposition to, or a replacement for, assisted dying. I disagree for a few reasons.
Firstly, I am convinced that not all suffering can be relieved by even the most effective and skilled palliative care. My sense of the balance of opinion among opponents of the bill is that this is acknowledged but considered an acceptable burden to place on the terminally ill because of the potential harms associated with any change in the law. This seems to depend on a willingness to prioritise one’s own assessment of the potential harms to society over a terminally ill individual’s assessment of what pain they are willing and able to endure.
One of the ways we know that palliative care does not always relieve people of burdens that they themselves consider intolerable is that 80 percent of those in the Australian state of Victoria who had an assisted death were already receiving palliative care. Research from Marie Curie found that a third of people in England and Wales were “severely or overwhelmingly affected by pain in their final week of life”. And many people from the UK who travel to Switzerland to access assisted dying have already had experience of British hospice care which – despite challenges of funding and access (which are real and important) – is still generally regarded as the best in the world.
Secondly, I do not have any reason to believe that the provision of assisted dying will see a deterioration in palliative care. In fact, the Health and Social Care Committee found that “In the evidence we received we did not see any indications of palliative and end-of-life care deteriorating in quality or provision following the introduction of (assisted dying); indeed the introduction of (assisted dying) has been linked with an improvement in palliative care in several jurisdictions”.
Some thoughts on process
Some of the people I most respect have a different view about the process which has led us to today. I have paid particular attention to this argument given the expertise in law and public policy of those making it. Their concerns generally fall into two strands.
The first is whether there has been enough pre-legislative scrutiny or whether this bill has been ‘rushed’. My own view is that there is a huge amount of information for MPs to draw upon when voting today.
Assisted dying has been the subject of prolonged and high-profile public debate and I have been the grateful recipient of a huge volume of constituency and external correspondence on it. There has already been extensive debate in the House of Lords, on a previous Private Members’ Bill in the House of Commons and, here in Scotland, on a bill before the Scottish Parliament, as well as about the international evidence from jurisdictions with some form of assisted dying (covering some 300 million people). There has been a Citizen’s Jury and an inquiry by the Commons’ Health and Social Care Committee lasting 14 months and resulting in a very comprehensive consolidation of the evidence base. While people may legitimately disagree with the vote I am casting at Second Reading I do feel I have had enough input at this stage to cast an informed vote.
The second concern is whether there is enough provision for scrutiny should this bill pass its Second Reading. Some opponents believe it is wrong for such important legislation to be introduced as a Private Members’ Bill. On this point I am reassured by the precedent of other landmark reforms being introduced in this way and by the confirmation by the former Clerk of the House of Commons, Sir David Natzler KCB, that “Private Members Bills’ go through the same legislative scrutiny procedures as Government bills … And there is as much if not more time for consideration in due course of any amendments from the Lords as for a typical Government bill”. The Bill Committee will look at the bill clause by clause and vote on relevant amendments.
One particular concern from opponents is that Bill Committees on Private Members’ Bills do not, in general, receive evidence from external witnesses. On this I am reassured on two counts. Firstly, the Standing Orders do allow for the gathering of oral evidence from external witnesses even if it is not the usual practice. There is nothing to stop it in this instance and I would welcome it if the Bill Committee did this. Secondly, I know the diligence with which colleagues have approached our responsibilities at Second Reading. I do not know of a single MP who has been unwilling to consult widely and reflect deeply. This would be magnified many times over for members of the Bill Committee and the external experts and interested parties who have already been in touch to make representations on specific clauses can continue to reflect these concerns in correspondence with members of the Committee.
It is currently estimated that external parties would have five months between Second and Third readings in which to seek amendments and encourage parliamentarians to vote for or against the bill at Third Reading.
There is nothing about voting in favour of a bill at Second Reading that compels any MP, including me, to vote in favour at Third Reading. If the bill passes Second Reading today that is the beginning and not the end of more detailed discussions. Please do continue to feed in any evidence or consideration you think I have either missed or unduly discounted. One of my hopes in laying out my thinking in this level of detail is that it will enable exactly that sort of challenge and dialogue.
Where all this leaves me
Being your MP is the privilege of my life and I am aware that my role as a lawmaker gives me an outsized role in this debate. We can all, however, do more to ensure that this is the beginning of a new and better approach to the end of life in our country.
I have been prompted by my deliberations on this topic to check my details about organ donation are up to date and I will be looking to give blood soon. Please do consider doing likewise. If you’d like to support our nearest hospices you can do so by donating to Marie Curie or St Columba’s. Macmillan also supports end of life care in the wider NHS Lothian region.
However this vote goes, I hope we can agree that the best response to the enormous ethical questions it raises is to listen to and love one another that bit harder. I have tried to do both in the five months since you entrusted me with representing you. I hope this letter has done some justice to the faith you have placed in me and the enormity of the choice ahead of us all.
Yours aye,
Kirsty
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