Emily Jackson looks at the arguments for and against allowing people whose suffering has become intolerable access to assistance in planning their death, and suggests that the status quo, in which the UK exports the ‘problem’ of assisted suicide to Switzerland has little to recommend it.
There is, most commonly among a subset of patients suffering from terminal conditions like cancer and motor neurone disease, a strong and understandable desire for more control over the dying process that they know lies ahead of them. In the West, most people now die from degenerative diseases which are characterised by a slow and extended decline. As well as prolonging patients’ lives, modern medicine has also prolonged and institutionalised the experience of dying.
Of course, all of us will die and so the choice is not between an assisted death and not dying at all. Rather, and to put it bluntly, the options are dying now or dying later. In choosing an assisted death, a patient is essentially opting for an earlier death, over which they are able to exercise some control, in preference to a later death, where control may be absent, and which may be preceded by a period of extreme dependency.
All of the available evidence suggests that what people fear most towards the end of life is seldom pain, but what I will refer to as ‘loss of self’. Surveys from the state of Oregon in the US and the Netherlands, where assisted dying is lawful in certain circumstances, consistently show that what matters most to people is not pain or fear of pain, but instead the psychological consequences of extreme dependency. In 2009 in Oregon, loss of autonomy, was cited by 97 per cent per cent of people who sought access to assisted suicide; loss of dignity by 92 per cent; decreasing ability to participate in activities that made life enjoyable by 86 per cent and losing control of bodily functions by 53 per cent. Inadequate pain control, or concern about it, was much less commonly cited (10 per cent). In one study of the reasons for people’s interest in assisted suicide, a patient with metastatic lung cancer explained what he meant by his fractured sense of dignity:
And I was on the commode and I had to be wiped and I just about cried my eyes out because of…you know, I never felt…I said to the nurses, God, who would have ever thought it would ever come down to this. I got these diapers or whatever it is that they call it… And that’s presenting a problem. I don’t like to think of myself as that. Things like that. That’s my dignity and it comes down to types of things like that really…So I get mad.
Some patients are admirably stoical in the face of this loss of capacity for self-care whereas others find it unbearable.
It is also critical to recognise that the availability of assisted dying is of value to a much wider section of society than will ever, in fact, access it. Discussion about the option of assisted dying may then serve a purpose other than that of hastening death. Frances Norwood’s anthropological study of people requesting euthanasia in the Netherlands found that most of them did not, in fact, want to die, rather they wanted what she referred to as ‘an insurance policy for future suffering’. Knowing that, if necessary, one would be able to avoid the sort of death that one has witnessed others suffer helps people to come to terms with the fact that their condition is terminal. For many patients, the prospect of being able to exercise control over the dying process is what matters most.
Despite the prohibition on assisted dying in the UK, UK citizens can and do travel to Dignitas’ clinics in Switzerland in order to access assisted suicide. In addition to the ‘assistance’ provided by Dignitas’ volunteers, people who travel to Switzerland in order to die are almost always also ‘assisted’ by friends of family in the UK, who might book an airline ticket or accompany them. They are also nearly always ‘assisted’ by healthcare professionals who will be asked to prepare a copy of their medical notes for them to take with them to Zurich. Despite assisted suicide being a criminal offence in the UK – punishable by up to 14 years in prison – none of their doctors, relatives or partners has been prosecuted as a result of providing assistance to people who have died in Dignitas clinics.
In addition to the costs of flying to Zurich, assisted suicide in a Dignitas clinic costs approximately €4000. The ‘Swiss option’ is therefore not available to everyone. People also have to go to Zurich while they are still fit enough to travel, meaning that many die sooner than they would like to, and of course they cannot die in their own home. As Dr Anne Turner, who suffered from progressive supranuclear palsy, and went to Dignitas accompanied by her children in 2006, explained,
In order to ensure that I am able to swallow the medication that will kill me, I have to go to Switzerland before I am totally incapacitated and unable to travel. If I knew that when things got so bad I would be able to request assisted suicide in Britain, then I would not have to die before I am completely ready to do so.
It is also worth bearing in mind that the safeguards in place in Switzerland are not necessarily as rigorous as one might wish a carefully drafted assisted dying law to be. The Swiss have not specifically taken steps to legalise assisted dying, rather assisted suicide is a crime only if the motive is ‘selfish’, which means that all that needs to be proved is that the person who assisted the suicide acted from compassion. This is a fairly minimal requirement, and although Swiss ‘right to die’ societies impose their own more rigorous requirements, the law itself contains none of the safeguards – such as psychiatric assessment and a palliative and social support filter – which should be part of carefully drafted assisted dying law.
In short, anyone who is determined to die at the time of their choosing can access assisted suicide by travelling to Switzerland. But this has multiple disadvantages – earlier deaths, fewer safeguards and people must die in a strange country, rather than in their own home – and no advantages, unless permitting countries to maintain a prohibition on assisted suicide, while allowing their richer dying citizens to circumvent it relatively easily, is regarded as a benefit.
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I have always believed that we have a soveriegn right over our lives and our bodies. No Government should think it can operate, against the will of the majority, to prevent a rational deciision to end one’s life. Society and particularly the medical profession should have the freedom to assist if required.
I have recently been diagnosed with liver cancer and now find that travel to Zurich is my ony option! With COVID lockdown restrictions I am appalled that this will now be my only option with all the difficultly and disruption this will create. To die with dignity in my own home is a fundamental human right, a choice I should not be prevented from making. I sincerely hope that eventually this will become possible and that in the future individuals will have available less traumatic ways forward than I now face.
Hi James,
If you’d like to get in touch with her, Emily Jackson’s contact details are available here: http://www.lse.ac.uk/collections/law/staff/emily-jackson.htm
I accompanied my mother to a dignitas clinic in Zurich in 2007 and support the above reasoned views 100%.
In difficult circumstances, it was the only thing that gave my mother any comfort though as you point out it is certainly not an ideal solution. My mother’s suffering was intense, and the UK-based services did not provide any real solution, purely paliative care which was indadequate not just from the perspective of dignity but also from the perspective of pain management and retaining one’s lucidity. Once effectively condemned to die, how one dies must surely be a matter of choice…
I would like to discuss this further with you if at all possible – you have my email details so I would be grateful if we could set up a brief meeting?
Very best
James