This too could be me or you

There was an important debate in the UK parliament last week, one which has received relatively little media attention, and yet one which could affect any one of us in the future.

Easeful-Death

The draft Bill was the Assisted Dying (No 2) Bill, which was to ‘enable competent adults who are terminally ill to choose to be provided with medically supervised assistance to end their own life.’

That summary is, of course, very important in setting the context for what it was, and was not, trying to deal with. Unfortunately, because the topic is understandably an emotive one, both the public and parliamentary debates tend to conflagrate a number of issues which, in a more general sense might be seen to have some connection but legally are very separate.

I wanted to give a personal view on the debate. In doing so, I claim no medical expertise. One of my backgrounds is in ethics, which might have made the whole topic of more interest to me, but my starting point is putting myself in the position of someone at whom the Bill was aimed and considering what I would want.

But before we go there, it might be helpful to give some background to how this ended up as a parliamentary debate.

As the law stands, suicide is not illegal. For some people it remains morally wrong, but it is not illegal.  But what happens when someone might choose to end their life but cannot do so without assistance? Assisting another person’s suicide is potentially considered murder under the law, but that is a blunt instrument and does not distinguish between the spectrum of motives someone might have to provide that assistance. The people we wish, I think, to protect in these circumstances are are exemplified by those who are motivated by a desire to relieve the suffering of a loved one, particularly where that suffering has become intolerable.

Several high profile cases (Dan James, Debbie Purdy and Tony Niklinson) sought to clarify the law, albeit – and I think we have to acknowledge this up front – in circumstances which the draft Bill did not seek to address. One of the outcomes was a set of guidelines drawn up by the Director of Public Prosecutions (DPP) on when it would not be considered to be in the public interest to prosecute someone for assisting someone else to end their life. Because this was the uncertainty hanging over anyone considering this course of action – would they (or their loved ones) be prosecuted after the event? It was not simply a matter of what the law said, but of how it would be applied in practice.

However, guidelines on the approach that, after the fact, might be taken on the question of prosecuting an individual, were seen as unsatisfactory, including by the president of the Supreme Court, who said that:

A system whereby a judge or other independent assessor is satisfied in advance that someone has a voluntary, clear, settled and informed wish to die and for his or her suicide then to be organised in an open and professional way would…provide greater and more satisfactory protection for the vulnerable, than a system which involves a lawyer from the DPP’s office inquiring, after the event, whether the person who had killed himself or herself had such a wish.

The Supreme Court said also that resolving this question was a matter for Parliament to address, not for the courts. This, then, was what the Bill was trying to do. There is additional recent history in that this Bill was first proposed by Lord Falconer in the House of Lords, where it was defeated, but I will focus here on the more recent debate.

Let us start with the Bill itself and what it provided for. It’s not a long Bill and it’s well written in that it is clear and you do not have to be a lawyer to understand it.

In a (non-lawyerly) nutshell:

  • If a person has been diagnosed as being terminally ill (defined as having less than six months to live); and
  • That person has made a signed declaration that ‘he or she has a voluntary, clear, settled, and informed wish to end his or her own life’; and
  • Two independent doctors have confirmed both of these conditions and that the person has the capacity to make the decision to end their life; then
  • An application can be made for a High Court judge to permit a medical professional to provide the means for the individual to end their life.

There is a lot more detail than that, but I hope that this summary does justice to the essence of the proposal. So before anyone can be assisted to end their life, there has to be the formal and independent involvement of two doctors and a judge.

What the Bill did not propose – and I include this because too many MPs seemed to be unable to grasp the factual content of the Bill – included:

  • Disability would not qualify for consideration under the terms of the Bill. This was purely about people with a terminal illness.
  • Doctors would not be permitted to administer anything to end the patient’s life. Only the patient would be allowed to do that. A doctor would be allowed only to provide the means to facilitate this, and even then the patient could decide not to  go through with it, at which point the doctor would take the medicine away. It would not be left lying around ‘just in case’.
  • Doctors would not be required to participate in an assisted death. There is a specific clause providing for conscientious objection.

While I was frustrated with the poor grasp some of the MPs had on the facts of the Bill, the real questions they struggled with were those which we would all have to answer for ourselves. There were some clear themes in the debate and I will try to capture them and give my personal reflections on them.

Slippery slope

Helen Jones MP:

This Bill is not simply about those who have a terminal illness and are expected to die within six months, because it will inevitably be extended. It is a Bill that will in future lead to consequences for this society that in my view no civilised society should contemplate.

This is the argument which is advanced against many changes. Essentially it says ‘We shouldn’t just discuss the actual question, but also consider what might happen in the future and base our decision on that as well’. In this case, the Bill was clearly defined. Could it have been worded even more carefully – yes, and it probably needed to be, but that is what happens in the Committee sessions of parliament, which was what the vote was on – whether it should proceed to the next stage of scrutiny. Parliament was being asked solely to consider the specific proposals in the Bill, not to write a ‘blank cheque’ for future changes. Any later developments would have to come back to parliament to legislate for or against, meaning that control would always lie with parliament. And the debate in both Houses made it clear that, unlike so much other legislation where meaningful parliamentary scrutiny is virtually non-existent, this is an area where a great degree of attention would be paid to any later proposals.

Coercion

At one end of the spectrum is the scenario where someone is put under undue pressure to end their life. The less malignant version is where they feel that they are a burden on their family and that they should end their life.

It could happen, of course it could, particularly the second scenario. But the individual would have to convince two doctors and a judge that they – not someone else – wanted to end their life. I am also not convinced that, where safeguards like this are included to protect the vulnerable, we should instead choose to withhold the right to a death of their choosing from everyone. I would therefore want to balance Bob Stewart MP’s comment that ‘If there is just one mistake, and one person dies who should not have done, this House will have failed in its duty’ with ‘If there is one person who suffers an agonising death who need not have, this House will have failed in its duty.’

Is there such a thing as a right to death?

I just suggested that there is a right to a death of our choosing. But is there? I don’t know. But I do know this. At the moment, I cannot imagine a scenario in which I would no longer wish to live. But right now I am healthy and happy. What would that look like in a few decades time if I had an incurable illness that caused only pain, pain that I no longer felt I could, or wanted to tolerate? I might still be able to take some action to end my life. But what if it got to the point that I was incapacitated, unable to fend for myself, and there was no end in sight to the pain, just the hope of eventual release through a painful death?

I am very clear that I would want to have the choice to be helped to end my life before it became intolerable and my last days and weeks were nothing but pain and possibly regret for not having chosen to end my life earlier, which I still could have. Earlier than I would have wanted to – just in case it got too bad later on.

Is it a right? I don’t think it matters, to be honest. I think is humane and compassionate to allow me not to have to suffer because someone else thinks I should have to. In the end, parliament has in effect just decided that they would prefer I suffer in those circumstances.

There are better alternatives

Much mention is made of palliative care as removing the need for assisted dying.

Jonathan Reynolds MP:

There is a right to die under UK law. Any of us has the right to refuse further medical treatment in such a way as to bring our lives to a natural end. Furthermore, a person making that decision can usually obtain pain relief to ease their suffering.

Were this the case, there would not be examples of individuals starving themselves to death as the only way to end their life. For me, that ranks up there with drowning as an unimaginable way to die. For many people, our fear is not of death, but of the process of dying. Refusing medical treatment cannot be the sole answer, nor can pain relief. They may cover a great many situations, and for me the debate about assisted dying is not about saying that palliative care does not lead to a dignified departure from this life in a great many cases. I hope that my eventual death will be something that falls within that category, whether requiring specific measures or just because I stop functioning one day. But there are too many cases where palliative care is simply not sufficient, and although these are at the more extreme end, is it not right that we provide for them as well? I think so.

The letter from some of the faith groups in the UK implicitly acknowledges this:

Sadly, there are still instances of painful or distressing death, though due to advances in palliative care, these are much less common than was once the case. […] We believe that the best response to individuals’ end-of-life concerns lies in ensuring that all receive compassionate, high-quality palliative care and that this is best pursued under current legislation.

It is to the credit of the medical community that these cases of painful or distressing death are less common than in the past. But they still exist, and we should be providing for them in a humane and compassionate way, not saying that palliative care is the answer for all when it is plainly not. It was interesting that a number of MPs declared that better provision should be made for palliative care in the UK. More interesting, perhaps, will be how many of them now do anything about that desire.

I’ve now strayed outwith the parliamentary debate on the topic by bringing in the letter from the faith groups, but I will permit myself one more related tangent. I was disappointed by two aspects of Justin Welby’s summary of the issue (I’ve included a link to the full text as I am aware that I am picking out only his final paragraph for comment):

The current law and the guidelines for practice work; compassion is shown, the vulnerable are protected. In spite of individual celebrity opinions and the “findings” of snap opinion polls (that cannot hope to do justice to the intricacies of the issue) the current law is not “broken”. There is no need to fix it.

But the law, with the guidelines, does not work, either as a legal construct or in practice. As I noted earlier, the Supreme Court was very clear on this. It is very much ‘broken.’ Denial that there is an issue which we should address does not aid the debate. And I find it extremely (and surprisingly) patronising for him to suggest that a view on this which is contrary to this is based on celebrity opinions (I’m not aware of any) or opinion polls. Ignoring the most senior judges in the country does us all a disservice. Disagree with them by all means, but don’t pretend they don’t have a valid view of the law.

Where I stand

So what do I think?

Sarah Champion MP summarised what my personal wishes would be:

We do not know—we do it only once—what our death will be like, but I would like to give people the peace of mind that if the situation becomes intolerable, they can make an informed choice about their own life.

And in somewhat different language, I find John Stuart Mill’s construct helpful:

The only part of the conduct of anyone, for which he is amenable to society, is that which concerns others. In the part which merely concerns himself, his independence is, of right, absolute. Over himself, over his own body and mind, the individual is sovereign.

All I want is the right to be helped to implement a choice I might want to make if the time came. And while I would hope that neither I nor anybody would ever be in the position of wanting or having to consider making such a choice, I know it has, does and will happen. And I could not in good conscience deprive them of what Mary Warnock and Elisabeth Macdonald call an ‘Easeful Death.’

I think this is one of the many difficult topics where fiction can help us get inside the issue in a way in which even the best portrayal of the arguments cannot. I find Jodi Picoult’s book do that extremely well. A novel that deals with assisted dying is a little closer to home and if you wish to disregard my recommendation on the basis that my future inheritance depends on sales of this book, you do not understand the economics of the publishing business. But you can ignore me anyway. I still recommend it.

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