Assisted Dying

I was prompted to write this by a Church Times article about the private member's bill currently being considered in the UK, and after a number of conversations over the years.  Assisted dying, or assisted suicide, is one of the ancient moral conflicts, where different and valid moral considerations are pitted against each other.  These considerations include:

  • respect for life;
  • respect for individual autonomy;
  • avoidance of unnecessary suffering; and
  • the commitment by Doctors to save life.

In the original Hippocratic oath, physicians swore never to administer poison, even when asked, and never to suggest such a course of action.  But, in many countries, both assisted suicide and physician-assisted suicide are legal.  Bound up in the complex moral issues are equally complex cultural issues to do with duty and honour, about autonomy and obligation, assumptions about the proper way to behave, and how to handle debts to your family, your boss, and your society.

To start with the obvious: it is impossible, at an abstract 'in principle' level, to reconcile the various ethical principles which arise in association with assisted dying.  But that is the problem with all ethical systems: whatever you choose, any non-trivial ethical system will produce contradictions in some circumstances - for almost the same reason that any non-trivial logical system will either be incomplete or contain contradictions.  So our task is not to produce some perfect abstract system which satisfies all ethical considerations in all situations, but to describe a system which is good enough, which people are willing to accept as a reasonable, if imperfect, compromise.  And a 'good enough' system will have to balance the ethical considerations in a way which is culturally acceptable.

Many of the moral arguments I have heard on this subject assume a certain cultural setting, and generally assume that the culture will not change - which in the modern world seems like a rash assumption.  They also often assume that people behave in a rational way - which is also generally a rash assumption, and especially so in the current context.  In areas like this, when we change the law, we change the culture - and we can't always predict exactly what the effect of the changed law will be.  So let's tread carefully.

Assisted dying is a difficult subject, so let's talk for a bit about suicide.

Suicide is the largest cause of death in males under 45 in the UK.  If we look at 20-34 year olds between 2001 and 2018, there were 21,098 suicides.  By way of comparison, there were 11,400 land transport accidents - the next highest reason.  And the figure for suicides does not include accidental poisoning (8,851) or death from mental disorders caused by drugs (5,691), some of which may reasonably be assumed to have been some form of suicide.  Suicide is also the largest cause of death among females of the same age, and are also more than double the deaths from the next highest cause.

To put it more simply: the figures in 2018 show that on average just under 6,000 people in the UK take their own lives every year; three-quarters of them are men.

Suicide is a massive issue in our society, but it receives hardly any public attention.  Part of the reason, I assume is because there is no clear cause, and nothing simple or straightforward which can be done about the various identified causes.  In a report about male suicide produced by the Samaritans, men talk about relationships breaking down, separation from children, job loss, addiction, lack of close friendships, loneliness and being unable to 'open up': these seem to be reasons for suicide for people who do not have the capacity to handle the challenges in a way that mentally healthy people are capable of doing.  A range of different mental health issues are another obvious source of reasons; other causes have also been suggested.

To complicate things further, suicide rates can make it look more like a communicable disease than a rational - or even irrational - choice.  Publicity about a known figure killing themselves for some reason will spark an increase in other people killing themselves for the same 'reason'.  Once it is culturally an acceptable thing to do, it becomes a choice to be considered - perhaps as a way of demonstrating that you really could not live without the object of your affections, or a way of getting revenge on those who have hurt or ignored you, or perhaps it is seen as the only honourable 'way out' of a situation.

(I can't help quoting the wonderful Kai Lung at this point: "There are few situations in life that cannot be honourably settled, and without loss of time, either by suicide, a bag of gold, or by thrusting a despised antagonist over the edge of a precipice upon a dark night." )

People tend to assume that suicide bombers are religious fanatics (or, perhaps, political fanatics) who are so motivated by the cause that they are willing to give their life for it.  In reality, most of the time, they are disturbed young men who want to kill themselves, and who want to find a good reason to do it - a good excuse, if you like.   The fact is that people can justify suicide in many different apparently reasonable and rational ways.  That is, they can justify suicide in ways which seem to them to be reasonable and rational - but which may later seem like very bad reasons, if they could only receive receive the love and the support they need to work through their problems.

In other words, in normal circumstances, we regard the desire to die as an expression of mental illness.  I know this is horribly simplistic, but as a summary of a big and complex subject, I think it is fair.  I know many people who have wanted to kill themselves, often who have tried and failed several times, and who now live happy and fulfilled lives.  And, it is worth pointing out, many people who become disabled consider suicide for a time, because they cannot have the life they had planned and cannot imagine having a good life if they cannot see / walk / hear / ... - but they go on to build and enjoy a life which, at one time, they could not imagine.

Talk about assisted dying usually describes someone who would want to live if it were not for a terminal illness which is causing unbearable pain.  And I feel deeply for people in this situation: we should not ignore their plight.  But there will be many people who have a terminal illness and whose lives are not that neat and tidy - who may have been considering suicide for many difficult and complicated reasons, who may be suffering from undiagnosed mental illness, who may be feeling they are a burden on their family, or that they are taking NHS resources which would be better used on the young.

Talk about assisted dying always insists on it being a free choice.  But how can you tell?  And what counts as a free choice?  A parent who sees themselves as a burden on their children may well make a free choice to make their children's lives better.  And the children may take care to ensure that the elderly parent knows that assisted dying is a free choice open to them.  Our choices always have reasons, but we are not good at identifying those reasons in ourselves much of the time, so what hope do we have that we can be sure of someone else's reasons for choosing assisted dying?  It's just not possible.

And we may think of assisted dying as being about the prevention of unbearable suffering, but the reality is somewhat different.  The Assisted Dying Bill does not talk about unbearable suffering.  When, then, is assisted dying likely to take place?  In the USA, the state of Oregon did a survey in 2015 of people being given medical assistance to die.  They asked what their biggest end-of-life concerns were: 96.2% of those people mentioned the loss of the ability to participate in activities that once made them enjoy life, 92.4% mentioned the loss of autonomy, or their independence of their own thoughts or actions, and 75.4% stated loss of their dignity.

To state the obvious: we are all dying.  Some of us have a clearer expected timescale than others, but nobody is going to live forever.  None of us is autonomous: we all depend on other people to grow our food, deliver our water, heat our homes, make our clothes and furniture, create the songs and films and podcasts we enjoy.  If we are living for the sake of gaining pleasure , then maybe we need to re-think what life is about.  And anyone who has survived being a baby should not worry too much about personal dignity: you lost it on the changing mat and in the childhood tantrums.  Learning how to live is challenging, at any age, but that doesn't mean we shouldn't try.

We have operated with the principle of double effect for a long time: sometimes it is permissible to cause a harm as a side effect (or “double effect”) of bringing about a good result.  When a patient is suffering badly, with no hope of recovery or of the suffering coming down to an acceptable level, doctors will, with the permission of the patient or their proxy, increase the painkiller dosage to alleviate the suffering, even though that dose will lead to the patient's death in the near future.  It seems to me that this is a compassionate and ethical response to a difficult and distressing situation, and meets the concerns of many of those who want to make assisted dying legal.

Postscript

Re-reading the above, it seems that I start by recognizing that assisted dying is a difficult and complex issue, but end by suggesting that it can be easily solved by staying with the principle of double effect.  To be clear: I don't think that this is easy or simple, and I don't think that it satisfies all that people have asked for in this area.  But I do think it is the best option, out of those which have been proposed to date.

Using the principle of double effect is a compromise.  A valid ethical principle says that medical professionals should never kill their patients, although they may at times withhold life-giving  treatment - the 'Do Not Resuscitate' status is an obvious example.  Another valid ethical principle says that medical professionals should follow the wishes and instructions of their patients.  The 'double effect' approach is a way of attempting to reconcile these two principles - which, of course, means that it fails to satisfy all those who want one principle (whichever it is) to over-ride the other at all times.

Also, the principle of double effect is a simple compromise.  Those who argue for the legalization of assisted dying (in my experience) generally fail to understand the importance of simplicity here.  In matters of life and death, you need clear and simple rules.  When people are stressed, sick and confused, they often fail to understand what is being said, or what they are being asked; they are vulnerable and will often believe what they are told, because their memory is unclear and they do not understand the situation.  Vulnerable people should not be placed in a situation where their continued survival depends upon a number of other people, who they do not know, operating a complicated legal system which they do not understand.

And the principle of double effect is a compromise which requires no change to UK law. Assisted dying is a deeply emotive subject, and whatever the law says, it will not satisfy everyone.  We have seen this in other countries: the law is changed to allow this to happen in these circumstances, but then another group of people, facing a slightly different set of circumstances now feel doubly cheated, because the law does not allow them to do what they want, and it has been changed to meet other people's needs, but not theirs.  Any change to the law in this area will not be the end of the problem, it will only be the starting point for other people to campaign for yet more changes.

Finally, we need to create much better end-of-life care - not just for people who are disabled or in pain, but for everyone.  I know of no better work on this subject than Atul Gawande's Being Mortal.  When medical professionals talk with dying patients about their desires and preferences - incredibly, far too often, this does not happen - then there are three significant changes.  Not for everyone, of course, but for many people.  The patients choose to receive less medical treatment (and the treatment they do receive costs less time and money); the patients and their carers report a better quality of life; and the patients live longer.  It is a clear win-win-win.  But it all depends on a really difficult cultural change: it requires us to treat dying patients as people, and really listen to them.

 

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Comments

  • 13 April: I have added a Postscript, which (hopefully) corrects a wrong impression in the main article, and spells out in more detail why I think the legal status quo should not change, but what should change instead.

  • Paul: Your thoughts on the subjects of Assisted Dying and Suicide are of interest to me personally and professionally. On a personal level I am thankful that so far it has only been a theoretical interest, but professionally I had considerable experience of working with clients with thoughts of suicide in my thirty years as a psychiatric nurse.

    The main thrust of your essay is about Assisted Dying, but you also talk about suicide generally, and I will do so too, to illustrate that many of the considerations in a person’s thoughts are the same.

    I am adamant that I want the right to die in my own timing if I am diagnosed with an incurable, distressing and debilitating illness or injury and likely to lose my autonomy. I do not want to have concerns about anyone else being prosecuted or about my life insurance being rendered invalid. I really don’t see why anyone has the right to stop me. When things get that bad, it is not about the expectation of life being about pleasure; it is the avoidance of the opposite of pleasure. The argument that we don’t have autonomy at the start of our lives and we may lose it again when we are old is a false equivalence: I didn’t know any different when I was zero years old! A person’s competence to make the decision is already covered by the Mental Capacity Act, which states that providing a person is assessed as having the mental capacity to make decisions, health providers must support them in any decision they make even if it is a bad one. There may be an exception if they are putting themselves at immediate risk, but a considered decision to request Assisted Dying if they are terminally ill should not count as risk. It is sometimes argued that relatives might persuade a vulnerable person to take their life prematurely if they stood to benefit: but this is a very theoretical possibility with few if any real examples and can easily be guarded against by competent health professionals who would do their own assessment of the person’s wishes. Some doctors oppose Assisted Dying, but the “Doctor as God” concept has had it’s day, and in the 2020s they should be working with clients not controlling them. The only other objection is the religious one, that only God has the right to end someone’s life. You would need to look hard to find a specific scripture rather than a church dogma to justify this, but in any case religions have no right to impose their own beliefs on others, especially if it causes suffering. My life is mine to dispose of as I please. And I say that even as a retired mental health professional: I knew a nationally-renowned Consultant Forensic Psychiatrist who died by suicide when he was diagnosed with an aggressive form of dementia. [We no longer say “Committed Suicide”: suicide has not been a crime since 1963, and to suggest that a person has “committed” it is judgmental in the extreme. “Died by Suicide” is the preferred terminology].

    Suicide in people who are not terminally ill is clearly totally undesirable and a tragedy when it happens, but like much in life, it is still not a black and white question.  Many of the mental health clients whom I encountered were suffering from illnesses such as schizophrenia or depression that had a good chance of being curable, or they had suffered trauma that could be addressed in counseling, and it was an absolute tragedy for the person and their families if they died by suicide. I had no doubts whatever about my duty to protect these people.

    The problem is that some clients had illnesses for which no medication or therapy seemed to work. They suffered for years with distressing illnesses – depression can seem like a physical pain – with no end in sight, often on the bottom rung of society due to being unable to work. Some only lived as long as they did because of their loving families. The effect of suicide on a family is an extremely good reason not to attempt suicide. But it is not an Absolute Reason, and sometimes that thought is just not enough. Obviously as a last resort we were able to admit these people to hospital, compulsorily under a Section of the Mental Health Act if necessary, if the risk was thought to be acute. But the problem was when it was not quite that clear-cut: the client would talk of ending their life but denied any immediate intention to do so. It was still my duty to steer them away from suicide however much empathy I had for their plight (and however much I projected my own fears onto them). But there were times when I had long conversations with clients who saw no future other than continuing mental and physical suffering; sometimes they had intractable addiction issues; they lived in squalid accommodation on barely adequate social security payments, and sometimes they had no family who would miss them. When I retired, the situations that I was most glad to be free from were when I ran out of ideas to suggest to clients why it was worth staying alive. I wondered if I would have stayed alive as long as they had if my life was as shit as theirs seemed to be.

    On the positive side, there were some instances where clients later thanked me for saving their lives, which made it all seem worth it.

    I was probably lucky in that although I knew several clients who died by suicide, only two clients who were actually on my caseload did so. When a mental health worker hears that one of their clients has died in this way, their first thought might be about the person and their family, but the second thought which will rapidly overtake the first, is about whether they will be blamed for this: could they have done more; had the client said that suicide was imminent and had this been acted on; have they kept the client’s clinical notes up to date; will they get hauled before a disciplinary enquiry for negligence and possibly lose their job; will the family blame or even sue them and the Health Trust? Fortunately in these cases, none of that happened to me. Both clients had loving families with whom I had a good rapport. The clients both had very long histories of distressing illness, with intractable depression and multiple previous suicide attempts and psychiatric in-patient admissions; one had serious physical issues and the other serious addiction issues. Their families had long since accepted that there was a high chance of them succeeding in a suicide attempt eventually, and they accepted that we could not keep them permanently in hospital just in case. I had to attend the inquests and give evidence; fortunately the coroners agreed that although suicide was always a possibility, there had been nothing to indicate that the person was planning to take their lives at that time.

    It is still difficult to see what I could have done differently in those cases but if I had my time again I would still be unwavering in my efforts to prevent that outcome. But judging the person for their decision, except possibly regarding the effect on their family, is something that I am greatly disinclined to do. None of us know how we would react if we were in similar desperate circumstances.  

    I trust that recounting my personal experiences above does not appear too self-indulgent. But it was certainly cathartic for me to write about it.

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