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Help to Live Not Help to die
- Jan 10, 2022
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by Dr Simon Andrew Howes
Because I like writing, and because I like thinking about difficult issues, a friend suggested that I write something about Assisted Dying. As good as this suggestion is, I have to confess that I approached this idea without a great deal of enthusiasm. There are good reasons why – politically – this is a matter beyond the purview of the party whips. Like abortion, assisted dying is considered a matter of conscience. While impassioned arguments can be advanced on all sides, there are – strictly speaking – no right or wrong answers and legislators must decide on the balance of the issues and the music of their hearts.
But sometimes events have a way of forbidding reticence. In recent months the crossbench peer Molly Meacher has made the fourth attempt in a decade to move assisted dying into UK law. A similar Bill is expected in the Scottish Parliament shortly, and advocates in the States of Jersey have just succeeded in gaining parliamentary approval in principle, although they have yet to finalise the details.
As far as I can tell, nobody on either side of this debate doubts that the advocates of assisted dying have anything other than the best intentions. And as some have pointed out, if asked the question “would you like to die in agony, or peacefully and with dignity” few would choose the former.
Nonetheless, this is not the end of the issue, and because a significant number of disabled people - including me - are alarmed by this prospect, I would like to devote a couple of lines to explaining why I am opposed to the idea. I would also like to stress that I make no claim to having discussed the full range of arguments on this issue - many of which are better described by others - and that nobody reading this is under any obligation to agree with me. I ask only that what I say be considered.
Around 1980 when I was born, and certainly in many of the years before that, there was a widespread idea that a life of disability was necessarily a life of suffering, misery, failure and defeat. When I was growing up, well-meaning people would attempt to commiserate with me (or my parents) in precisely those terms before being politely told to bog off. In the years since, the advocacy efforts of thousands of people have been directed to show that - on the contrary - disabled people can have rich, fulfilling and successful lives if society supports them to do so. For those that are interested, this is called the ‘social model of disability’. And as I know from my own experience, this is not just an abstract concept, it is the truth.
Nor is it just true if you have a comparably mild disability like mine. Stephen Hawking managed to have a reasonably successful career as the world's most famous physicist - and two wives and three children - while constrained by motor neurone disease. Christopher Reeve - who first became famous as Superman - was if anything an even greater hero as the world’s most famous spinal injuries patient. Although nobody is pretending that his life was easy, he continued to write, to advocate for others, to argue for better medical treatment and further research. Notably, he did not advocate to hasten his own demise.
Although by no means as famous, the members of the disability pressure group ‘Not Dead Yet’ are rightly just as insistent that they have had, and others can have, fulfilling and successful lives. All the more meaningful because many of the people who speak for ‘Not Dead Yet’ were born well before I was, when society was much more inclined to shut them away and forget about them.
In this context, what these people worry about is that assisted dying concedes a principle. That instead of saying disabled people can succeed when supported to do so, the best course of action is to put them out of their misery. And in case you are wondering whether these concepts are all that far away, there are well-documented cases of Do Not Revive (DNR) notices being applied to otherwise healthy disabled people through the course of the pandemic, without their consent or the consent of their loved ones. What Not Dead Yet have argued is that disabled people need support to live, not to die, and I agree with them.
On that note, the advocates of assisted dying - a charity called Dignity in Dying chaired by the same Baroness Molly Meacher - claim that 86% of disabled people support the change that they are advocating. This may be the outcome of their polling but I find this result highly debatable. Firstly, as I noted earlier, it very much depends on how you phrase the question. Secondly, if there really was such a groundswell of opinion on this issue you would reasonably expect this to be reflected in the arguments made by some of the organisations whose business it is to advocate for the rights and interests of disabled people. To date, not a single disability advocacy organisation has done so.
It is perhaps also a comment on the quality of their polling that Dignity in Dying also claim that what they are suggesting is supported by 80% of people of religious faith. This despite the fact that suicide is considered a sin by most of the religions I am aware of.
To be even handed, Dignity in Dying know full well that there are significant potential problems with what they are advocating. I can say this because they are very careful to state what they are not campaigning for. They are not advocating euthanasia and they are at pains to point out that assisted dying should not be seen as a substitute for proper social care.
Molly Meacher’s Bill, which is the embodiment of these proposals, also makes clear that assisted dying should only be available to adults of sound mind, with a terminal diagnosis in the last six months of life; this having been confirmed by two medical professionals working independently. It adds moreover that the person wishing to end their life must convince those same medical professionals and a high court judge that it is their settled wish to do so and that this decision has been reached without coercion.
So nothing to worry about then? Well, this might convince some people but it does not convince me. In reality, it doesn't matter what limits Dignity in Dying put around their arguments. It can be shown that what they are saying has had further consequences elsewhere beyond those limits, and in the real world policy decisions are littered with unintended consequences.
Firstly, physicians' prognostications of impending doom are notoriously unreliable. I have known people personally for whom this was true, and without discussing their situation - which I have no right to do - you only have to think about the lifespan of Stephen Hawking. Secondly, it is a matter of fact that setting discreet limits around legislation has failed in the real world. In the Netherlands, you can now apply for assisted suicide if you are an alcoholic, or have anxiety and depression. In Belgium, where similar legislation has been introduced, it has now been extended to children. In Canada, the law now includes voluntary euthanasia in addition to assisted dying.
Similarly, arguments around coercion are far from watertight. How are doctors, or indeed judges, to determine when no coercion has taken place beyond what the participants are willing to tell them? Many elderly people are concerned not to be a burden on their loved ones, and for too many people in this country, social care provision is both woeful and costly.
It would not be too difficult to suggest to a vulnerable person in that situation that there might be a speedier, more painless option. For context, a former Court of Protection Judge, Denzil Lush, has estimated that one in eight Lasting Powers of Attorney may involve financial abuse. And according to a 2015 report by Age UK, 50% of financial abuse of elderly people in the UK is perpetrated by their adult children. Coercion, if not overt, is not easy to prove.
Similarly, if you have a disability that means that you need lifelong social care, if such proposals become law then your position is changed fundamentally. NHS resource decisions are already made by robbing Peter to pay Paul, which is why those that can prove their disability was the result of medical negligence sue for the cost of private provision. How much less incentive is there to invest in decent state funded social care with this further treatment ‘option’ on the table? All you would need to do to coerce someone to take the option would be to starve their care of resources. And as many disabled people have pointed out over changes to the Independent Living Fund and others, in the last ten years the system has been doing that anyway.
Finally, as many palliative care professionals have argued, while change is needed this is not that change. Yes nobody would want to die in pain but you do not kill the pain by killing the patient. In fact, with the proper resources and appropriately trained clinical support, nobody need die in pain or without dignity. It is an indictment of our existing system that for too many people that is not the case. Just think of how many local hospice services are run by charities funded by donations and local lotteries. These people do amazing work but they are no match for the potential resources of the taxpayer.
For these reasons, while I respect what the advocates of assisted dying have to say I reserve the right to disagree. However well-meaning, we would be better served by helping people to live their lives and providing decent end-of-life care.