It is amazing how much can change overnight. As a parliament, we’ve gone from squabbling over environmentally-friendly buses to intense debate on matters of life and death. The bid by seven States Members to introduce Assisted Dying in Guernsey started quietly: when the proposals were published, we had little media interest and only one or two letters from the public.
On Wednesday morning, all that changed, when the UK media picked up on the story. Guernsey was suddenly at the heart of a national conversation, and that fired up the discussion locally as well. The campaign group who are calling for the introduction of Assisted Dying held an open public meeting on Thursday night (their presentation is online here), which has added further focus. I’ve been engaging with the discussion on Twitter so far, but it’s much too complicated and sensitive for soundbites, so it’s time for me to try and set my position out carefully here.
What is being debated?
On 16 May, 2018, the States will meet to debate a number of things, including a proposal to introduce Assisted Dying. The proposal is essentially in three parts.
Part 1 asks for in principle agreement that Guernsey will introduce some form of legal regime for Assisted Dying. The kind of legal regime is not specified. Unfortunately, the term “Assisted Dying” is also not defined – something which may prove to be challenging when we come to discuss exactly what the proposals could mean for islanders.
Part 1a says that no form of Assisted Dying regime, of any kind, will be introduced until we have “appropriate and effective capacity legislation” – that is, laws which protect people who don’t have the mental ability to make complex decisions, and who are most at risk of exploitation or abuse by others – in place.
If the States gives its in-principle approval, Part 2 would establish a working group to develop the legal regime. It would be required to consider a number of questions listed in the proposal (parts 2a-g), including: the role of doctors; the question of whether the dying person would have to physically end their own life (e.g. by taking prescribed medication), or whether someone else could assist; how to define terminal illness, and whether access should be restricted to people who are terminally ill; and whether or not it would be available to people who are not local residents.
The campaign group have made it clear that they would want Assisted Dying to be available only to terminally ill people with less than six months to live. They would only want the option to be available to local residents. Deputy St Pier, who is heading up the proposals, has shared similar views in a recent press release. However, the proposals are very open-ended, and if the States does give in-principle support for Assisted Dying and sets up a working group accordingly, there is no guarantee that the legal regime developed by that group will match all the expectations of Deputy St Pier, his fellow signatories, or the campaign group.
The case against Assisted Dying
Because the proposals are drafted so broadly, we must be honest about this up-front: even if the States agrees in principle to introduce Assisted Dying, we cannot promise that the eventual legal regime will be anything like the one that is being championed by most campaigners right now.
That fuzziness and uncertainty makes it difficult to construct a clear case for or against the proposals. But I’m going to give it a go. I do not support the introduction of Assisted Dying of any kind here in Guernsey. I can’t imagine realistic circumstances under which I ever could. I hope to be able to make the case against it with as much power and conviction as those who are making the case for it, now and over the weeks to come.
Before I entered politics, I volunteered for the Samaritans for four years. As a teenager, my first ever serious volunteering commitment was as tea-maker and errand-runner at the local hospice. I’m no stranger to death or the desire to die. And I will not condemn anyone who chooses to end their own life. That’s not where I’m coming from.
This is a very personal, emotionally fraught debate. Whatever side of the argument we are on, we need to approach it with compassion, mutual respect and honesty. People will bare their souls and confront some of their deepest fears over the coming weeks. We owe it to our community to create the kind of environment where they feel safe to do so.
Most people, on all sides of the debate, are approaching it with a sincere desire to do the right thing by people at the hardest time in their life. My plea, especially to others who – like me – oppose Assisted Dying is not to appeal to the worst side of human nature. The case against Assisted Dying can be made without imagining the slippery slope of “what might happen next” if we permit it. It can be made without spending too much time focusing on the manipulative relative who seeks to bump off a family member to benefit from their legacy. It isn’t healthy for us to spend too much time thinking of each other as monsters, nor to make legislation guided only by the fear of what’s worst in us and each other. Evil will happen with or without a change in the law, so that cannot be our sole guiding concern.
Let’s talk about suicide
The campaign group supporting this make a clear division between “Assisted Dying” and “Assisted Suicide.” Assisted Dying, they say, is for people who are terminally ill, with less than six months to live, and who have the mental competence to make the decision to end their lives. Assisted Suicide is for those who aren’t terminally ill, but want to end their lives for other reasons – and they don’t believe that option should be on the table for Guernsey.
Nevertheless, when we are debating Assisted Dying, I think we need to make reference to what we know and believe about suicide. Although different, both involve people making decisions to end their lives, and it would be foolish to ignore all we have learnt about suicide and suicide prevention, when considering the implications of Assisted Dying.
In this context, I think one of the most important things we know is that, if you make it harder to access guns, poisons or other lethal means, it helps to prevent people ending their lives by suicide. We also know that suicide spreads: one of the reasons why it is essential that media report responsibly on suspected and actual deaths by suicide is that imitative suicides, and clusters of suicides, are a real thing.
We can’t draw “lessons” from this directly, because none of the research relates to Assisted Dying. But it does offer food for thought. Including this: it is possible to develop effective suicide prevention strategies. In other words, people change their minds about ending their lives, and the social context is an important factor in their decisions. People are less likely to die by suicide when it is harder for them to do so, and when they are less aware of others choosing to end their lives that way.
Most critically, we accept suicide prevention initiatives as a good thing – the kind of thing any responsible government should concern itself with. In the context of suicide, we agree that vulnerable people should not be exposed to anything that would positively encourage them to choose death – because the evidence shows that can push them towards a decision they might not otherwise make. We do have to ask ourselves why such a protective attitude is not considered right when it comes to Assisted Dying?
The duties of a government
Supporters of Assisted Dying frame it as a matter of choice. A question of the right to die. For someone as liberal as me – that is, someone who believes that governments should constrain individual human liberty as little as possible – that’s a very appealing argument on the face of it.
In one sense, of course we all have a right to die. Or to put it the other way around: the only person who has any right to choose whether to end your life is you. With the abolition of capital punishment, governments no longer have the authority (I would suggest they never had the right) to take away your life, even as punishment for the most heinous crimes. Murder is outlawed because no person has the right to take the life of another. I will not make an argument for the sanctity of life pure and simple – as far as I’m concerned, if you choose to take your life before god or fate takes it away from you, it is not wrong for you to do so – but I am certain that no one has the right to make that choice but you.
But if you have, in principle, the right to make that choice, does that mean that your government has a responsibility to make it in any way accessible?
I think probably not. In my view, governments exist to create a society which gives all their citizens the best chance of flourishing. For people to flourish, they need two things: resources and freedom. I believe governments should only act to limit people’s freedom where the use of that freedom would cause harm to others. In other words, one of my basic beliefs about governments is that we exist to protect the liberty of our citizens, and to protect their lives.
Democracy is more complicated than just “the will of the majority.” It’s more like “everyone having a say in how their society is governed.” And I believe we have a special responsibility to people who are vulnerable or disadvantaged, for whatever reason, whose safety and freedom to live their own lives can be threatened by the demands of the majority.
Our justice system is built around the presumption of “innocent until proven guilty” – the principle that it would be far worse to deprive an innocent person of their freedom than to allow a guilty person to remain uncaught. Although, as a society, we are never wholly at ease with this, it has stood the test of time, because we recognise that individual liberty is so important that, where it is at risk, we must err on the side of protecting it.
So too, I would argue, with life. Assisted Dying might be welcomed – and consciously and thoughtfully chosen – by many, but I believe it will pose a real threat to some. Among those will be people at their most frightened, at their most vulnerable, and at their physically weakest. Given the importance of those two duties of government – to err on the side of life, and to protect the disadvantaged – I do not think a wise government would choose to introduce it.
Lives worth living
Like many people who approach the Assisted Dying debate recognising that it is ethically complicated and deeply personal – that each side can rally arguments of compassion, humanity and choice – it took a long time for me to be able to say with certainty that I believe we must not introduce it.
It was encountering the campaigning of Baroness Jane Campbell that finally confirmed me in that view.
Baroness Campbell is a disability rights campaigner. Of course, she does not speak for all disabled people – I am sure that the range of opinions among disabled islanders is as diverse as the views of our community generally. But she makes arguments that are worth hearing.
The Assisted Dying debate invites judgment about what kinds of life are not worth living. In part, this is subjective – what feels like a life full of meaning to me, may seem empty or unbearable to you. But it is not wholly subjective. If we accept the local campaign group’s definition of “Assisted Dying” as an intervention available only to terminally ill people with less than six months to live, that would create, in law, a category of lives – the lives of people with terminal conditions – where it is “normal” to expect that the person living that life might want to end it.
I think this has real potential to hurt disabled islanders, in particular. Many supporters of Assisted Dying would say “it’s about terminal illness, not disability” – but the lines between the two are blurred. In Baroness Campbell’s words: “I am fearful of the Bill not least because terminal illness is defined as ‘an inevitably progressive condition which cannot be reversed by treatment’. That definition could equally apply to many disabilities, my own included. … They [disability organisations] all agree that it is impossible to create clear blue water between disability and terminal illness.”
Moreover, the things which many non-disabled people fear facing at the end of life – loss of independence, reliance on others to help with the basics of day-to-day life, even pain – are regular features of the daily lives of disabled people. I don’t blame people for fearing loss – after all, I do. Terribly. But we must have our eyes open to the flipside – what we imply about the quality, the worth, of disabled lives, when we talk about our own fears. These conversations do not happen in a vacuum.
Coming to terms
We also need to talk about grief and adjustment. It is vital to recognise that many people who are diagnosed with progressive and terminal illnesses, or who become disabled through injury, grieve their loss – the loss of physical or sensory function, of mental ability, of certain hopes for the future. In time (although grief is not a wholly linear thing), many people adapt and discover they can be at peace with themselves, or live meaningful lives, in circumstances they would never have imagined. That’s not to downplay the distress and difficulty that people experience, but equally we must recognise the reality of grief, and the danger of Assisted Dying becoming an alternative, at a time when people are most struggling to cope.
It should be remembered, too, that the care-givers of people with progressive conditions also experience grief. The grief of the care-giver and the grief of the person they care for won’t necessarily be in step, and the way each person copes with their grief will no doubt affect the other.
Living well, dying well
In time all of us will die. For many of us in Guernsey, where life expectancy stretches beyond 80, it will follow several years of declining health after a long, fulfilled life.
So it is right that we should have the conversation about what it means to die well. We’ll all go through it, and most of us will be dependent on those around us – our family and friends, and the various care professionals that may be involved in our lives – to help us to have the twilight that we want, and to see that our wishes are respected beyond our death.
We need to be talking with our loved ones about our hopes and fears around dying and death. About the things that make life meaningful for us, and how we would want to live out our days, even in the face of illness and pain. This is more than just an opportunity to be emotionally or spiritually prepared for the end of our lives, although that is important. It is also an opportunity to think through the many practical concerns, which we often don’t confront until it is almost too late – wills and living wills, instructions for how you would like your medical care or your financial affairs to be handled if you lose the ability to do so yourself, funeral preferences and the question of organ donation. It’s an opportunity to explore unspoken assumptions about who will provide care for whom and how; to share any boundaries you might have in respect of care provided by family or friends, or any concerns in relation to care in formal settings. And maybe a chance to practise saying those things we don’t want to die without having said to each other.
Although campaigns like Dying Matters continue to push for this, it is still a long way from being as normal a part of our culture as it needs to be. After all, death need not be a taboo – speaking its name will not make it happen. And having had those conversations, throughout our lives, will give us that much more strength to face it when it does.
I don’t mean to sound glib, or to suggest that if we just talked about it more, no one would want to end their lives. Of course that’s not the case. And I don’t want to minimise the suffering of those who wish to die, nor to undermine the sincerity of their conviction. In truth, it’s probably even more important for us to have these conversations about what a good death means for each of us, if Assisted Dying is introduced, and we have to face the question of whether that’s right for us or not. But it is important to emphasise that a good, peaceful or dignified death takes many forms – there is no less dignity in a terminal decline than in a sudden end – and our end of life, whatever form it takes, will be a better one if we and those we share our life with have spent time thinking, talking and preparing for it throughout our lives.
Death in the time of austerity
I need to frame this part very carefully because I know that, in bringing forward proposals for Assisted Dying, Deputy St Pier was motivated by his progressive social conscience, not his conservative financial program. I know that two of the signatories to the proposals, Deputy Barry Brehaut and Deputy Peter Roffey, have consistently voted for fairer fiscal policy and more resources for public services (unlike many of those who will oppose it). I doubt any of the signatories had any motivation other than compassion – least of all a financial one.
Nevertheless, we must talk about the social context in which an Assisted Dying regime would be introduced.
And this is it: for the foreseeable future, islanders will continue to live longer lives, spending a period towards the end of their life in ill health, managing several health conditions, and in need of medical and social care, as well as support from family and friends. We know that social care is already under-resourced, and finding the funds to meet future needs will be even harder – especially as the States has signed up to a medium-term financial plan that will continue to cut back spending on public services from year to year. With the value of the pension falling relative to earnings and demand for long-term care rising so that it’s inevitable that individuals will have to make a higher contribution to their care costs, we cannot guarantee that every islander will be able to access or afford a level of care and support that means they will be able to continue enjoying a meaningful life as they become more dependent. (In fact, I’m afraid we already fall short, and we can’t promise that it’ll get better.) People without private insurance or private wealth – the working and retired poor – will invariably be affected most by this.
Under the Death with Dignity Act in Oregon (a model preferred by some local campaigners), the State Health Authority collects and publishes certain data about those who choose to die. The 2017 report found that, although only 6% said that their end-of-life concerns included the cost of treatment, 88% were concerned about being less able to engage in activities that made life enjoyable, and 87% about the loss of their autonomy. I would suggest that the availability and appropriateness of care and support is likely to have a big impact in these areas, and therefore that it’s right to consider whether the under-resourcing or unaffordability of care could lead people to prefer an assisted death, where otherwise they would not.
The introduction of Assisted Dying will place a huge demand on resources in its own right. It will be a legal puzzle no less complex than Brexit; and if it’s to be introduced anything like as safely as its proposers hope for, it will require a substantial overhead in terms of implementation costs and ongoing staff training. No provision for additional funding is made in the proposals, but if this is to be implemented within existing resources, it will further aggravate the problems I’ve just discussed.
I would strongly recommend Atul Gawande’s “Being Mortal” for its discussion of what it means to live well, even at the end of life. It isn’t directly addressing the question of Assisted Dying, but it is powerful food for thought for this debate. Again, it is a reminder that what makes a “meaningful life” is an intensely personal question (and one that changes over the course of a lifetime) and that we are a long way from ensuring that care services have the resources – and families have the flexibility – to provide true, personalised support for those who rely on them.
In other words, we could be doing a lot more to make life worth living for those in its twilight than we are currently doing. At the very least, it is socially irresponsible to consider introducing Assisted Dying without any commitment to do more in this area – either at the same time or beforehand. I’d argue that we have so much more to do as a society to value the lives of islanders with “life-limiting” conditions, and to be a community where they can flourish, that we should not go anywhere near Assisted Dying right now.
As I said above, I believe the first duty of a government is towards the life of all its citizens. In making policy or law, I believe we must have the same bias in favour of life as our justice system has in favour of liberty – that is, it’s better to err on the side of protecting life than of accidentally condemning someone, who does not truly want to, to die.
But what if we could frame an Assisted Dying regime so that it really was only available to those who truly want to die? Those who support it believe this could be done with the right process: with doctors as gatekeepers; with waiting periods; with unrelated witnesses to the decision. With effective protections in place for those who have lost the mental capacity to make complex decisions.
I think they are wrong. You only need to go back to the Oregon statistics to see why. You don’t have to believe that family members would be cruel or manipulative to a dying relative in their care, to understand that that dying relative might nevertheless be worried about “being a burden” to their family. And the Oregon statistics showed that, last year, over half of those who chose an assisted death (55%) were worried about that. By contrast, just over a third (37%) feared loss of bodily function and one in five (21%) feared uncontrollable pain – what one might call the dying process itself.
People are choosing to die because they do not see a meaningful life ahead of them, and because they fear the impact of that life on those they love. Their choices may well be compounded by grief at what has happened to them and fear at what lies ahead. They may not be “coerced” in the traditional sense of the word – although, let’s be frank, the reason why we have introduced adult safeguarding protections and are working towards Capacity Law is because we know that kind of predatory behaviour happens even here in Guernsey – but their choices are complicated by factors beyond simply the desire to die. Those are factors we could address compassionately, humanely, by other means – by encouraging people to talk about living well and dying well; by investing more in community care and better supporting care-giving by family and friends; by making our society more accessible and our community more welcoming for those with “life-limiting” conditions.
That alone is the work of a generation, and that is why I do not believe Assisted Dying will be the right choice for Guernsey within my lifetime – if ever. But nor am I willing to pretend that we do right by everyone at the end of their lives right now. I will not support these proposals in any shape or form, but I welcome the light that they shine on the question of what it means to die a good death – and how we can make that more possible for more islanders. In the face of a difficult debate, let’s move forward thoughtfully, and engage with each other gently, with compassion and respect.[/vc_column_text]