Of course, the question of evidence is important. After all, of the 300 million people with access to apparently safe assisted dying, some 200 million of them are in countries such as Canada, the Netherlands and Belgium, that allow for assisted suicide and/or euthanasia for people of all ages who are not dying, not terminally ill.
It seems that ‘proper safeguards’ boil down to eligibility criteria, in theory protecting vulnerable people. But the evidence from the US state of Oregon, on which the proposed assisted dying bill will probably be based, demonstrates that the eligibility criteria have gradually been expanded and safeguards relaxed. There is no longer a residency requirement; the length of the required doctor patient relationship has been reduced making it more difficult to identify treatable factors; the cooling off period after the request has been made has been reduced in certain circumstances; referrals for psychiatric evaluation and consideration of depression have declined; lack of data in Oregon where the statistics are derived from self-reporting, challenges the reliability of the criterion that the person seeking assisted dying has been diagnosed with an illness that will reasonably lead to death within six months. This leaves open the possibility that patients suffering from conditions such as arthritis, diabetes, complications from a fall, anorexia nervosa, and so on, are being assumed eligible.
Furthermore, evidence from Oregon and from Canada shows that ‘feeling a burden’ and fear of losing autonomy led a significant number of people to seek assisted dying But feeling a burden and fearing loss of control over choices are surely signs of vulnerability? Even in the jurisdiction held up as the ‘ideal’ by proponents of legislation, it appears that the vulnerable are being given assistance to commit suicide.
Lack of data means that there is no way of knowing if, at the time of ingestion of poison, the person actually intended to take their life or if they were unknowingly being helped on the way. Indeed, there is lack of data on those who fail to take the lethal drugs that they were prescribed and how they were counselled in the first place; there is no information on the adequacy or otherwise of palliative care advice; and little information on the complications following ingestion of lethal drugs. There is no way of checking since Oregon destroys source records a year after each annual report. As for the upcoming debate, some MPs are already calling for the proposed bill to go beyond application to the terminally ill to allow assisted dying for those who feel that they are ‘incurably suffering’.
Then there is the evidence of the recent ‘Citizens’ Jury’ to explore public views on assisted dying organised by the Nuffield Council on Bioethics, an independent policy and research centre. Most people think of a jury as a randomly selected panel of 12 people who help to decide a case in court. In court, a juror can be challenged and asked to stand down on the grounds of bias, for example if the juror has expressed hostility to one side or is connected to one side in some way. But a Citizens’ Jury is very different: participants register their interest and then are asked to provide some answers to demographic and attitudinal questions to ensure that the jury is broadly representative of what are assumed to be the attitudes of the British public. The object is precisely to stack the jury so that it appears to represent the perceived views of the public before the jury makes its deliberations. The full report is yet to be released, but the summary explains that in the final vote, of the 28 participants 16 members strongly agreed that there should be a change in legislation to permit assisted dying, 4 tended to agree, 1 was undecided, 5 tended to disagree, 2 disagreed strongly. It could then be reported that the ‘majority vote’ and ‘more than 70% of jury members’ were in favour of a change in legislation. One of the questions put to the jury was what would assisted dying legislation look like? Notably, the majority thought that voluntary euthanasia should also be permitted and there should be no age requirement. For Citizens’ Juries the devil lies in the detail.
Feelings of lack of dignity, of fear, of frustration at losing control, of anxiety, of becoming a burden on loved ones, of impatience and wanting the end to come as soon as possible, all deserve to be met with compassion. But a compassion that agrees with all these feelings, and proposes to help the person end their life, is not true compassion or genuine kindness. As those who accompany the dying know, there are emotional and psychological complexities surrounding serious illness and dying. Patients want to be able to express all their feelings, even feelings of wanting it all to be over, without those feelings crystallising into an irrevocable decision. A safeguard in the proposed assisted dying legislation demands that the person has a clear and settled wish to end their life. But the person’s complex feelings cannot adequately be explored if the person fears their ‘settled wish’ would be compromised.
However, there is clear evidence that palliative supported dying care can help people die well with real kindness and compassion. Much careful research is going into wellbeing at the end of life and into supported natural dying. Palliative supported dying does not hasten death, and it gives real choice. Choice begins with timely conversations about living and dying well, about what good care can look like. Choice involves patients, families and healthcare professionals together creating an individual plan of care which includes symptom control and psychological, social and spiritual support. Treatment that the person feels burdensome or futile need not be given.
With proper supported dying the person often can choose to die at home, surrounded by family and friends. True, with palliative supported care you cannot ask for poison with which to kill yourself. But whereas assisted dying implicates healthcare professionals in killing their patients by supplying lethal medication, palliative supported dying recognises the fundamental patient professional relationship of trust, of dignity and of attention to the personal wellbeing of the person to the end. Assisted dying expresses the impatience of wanting what you want here and now and on your terms even if you are depressed, afraid, mistaken, overwhelmed, vulnerable to feelings of despair, fear of abandonment or fear of being treated as less than a person.
