A few days ago HaggisforBrains referred me to a presentation by Dr. Tony Zigmond, a psychiatrist, to the Commission on Assisted Dying, chaired by Lord Falconer. Dr. Zigmond’s presentation is particularly interesting and important, because it raises questions about the capacity for choice. Reading elsewhere amongst the presentations, you may come upon one by Lady Onora O’Neill, a philosopher and a baroness, who raises questions about the ability ever to be sure that a person is capable of making an autonomous decision (#28 on the “Read evidence” list). Her concerns, which, as they are represented in the transcription of oral evidence, seem very confused, and certainly very “technical philosophical” (if you like), and scarcely relevant to the points she seems to want to make, end up, after much analysis, with this:
I do not think the legislation, any draft legislation, that I have yet seen, has addressed the question of depressive choice or has addressed the question of, let us say, the choice of those who are manipulated or leaned on, or who wish to convenience their relatives or carers or others. So that’s where I’ll stop but you can see how I tried to link some fairly abstruse considerations about autonomy with some thought about the legislation as it has hitherto been drafted.
I suggest that this is an entirely biased point of view based, not on philosophical considerations, but religious ones having to do with the sanctity of life. I have no evidence for this. I googled Onora O’Neill’s religious beliefs, religion, theology, church affiliation, and came up with nothing. Perhaps someone else would have more luck. But there is, quite independently of any law that might be passed respecting assistance in dying, a Mental Capacity Act which deals with Baroness O’Neill’s concerns. The question of mental capacity does not need to be included in an act governing assisted dying, since the Mental Capacity Act is sufficient to cover all situatons concerning mental competence and decision making in medical contexts.
It’s important, I think, to see Onora O’Neill’s conclusion (above) in relation to something said a few moments before that. There, she explains:
I got a few very well argued and sophisticated letters by proponents of legislation to make assistance in dying lawful. I got a very large number, probably twenty times as many, very much less sophisticated and educated letters, from people who said they were afraid of the legislation. I should emphasise that these letters were in almost no cases informed by any religious affiliation, comment or sentiment. They were people who were afraid that they would come under pressure from carers or nursing homes, perhaps family to agree to be killed.
It is on this that I base my judgement that Baroness O’Neill’s conclusions are based on religious considerations, for it is precisely the religious who are disposed to give more weight to ordinary people who “fear” the legislation, and think that they will end up being killed or be under pressure to be killed. (It also needs to be remarked that the religious opposition to assisted dying is very well organised, heavily funded, and would be sure to produce letters from concerned citizens in quantity.) This is the line the churches are taking, and they have stirred up a lot of anxiety amongst the disabled and some of the elderly, that their lives will be forfeit if an assisted dying law is ever passed. There is not one reason to think that this is true, and yet a moral philosopher of some distinction is swayed by this argument over the well argued and sophisticated letters of proponents of assisted dying. This woman has a deep bias against assisted dying. It may well be that her opposition is based on Kantian considerations, since the German philosopher Immanuel Kant argued that suicide is brutish and can only be carried out by someone who had forfeited their humanity. The only other basis that I know of for this bias is religious. Since Onora O’Neill is well-known for her work on Kant, perhaps the Kantian explanation is the most salient one, but it is hard to ignore the fact that the argument about pressure being applied to the disabled to kill themselves or have themselves killed comes almost entirely from religious sources.
So, back to Dr. Zigmond. Why is his evidence important? For the simple reason that he is arguing on the basis of existing law, and how it treats the capacity of make decisions. A person who is able to make decisions for themself is called, by Dr. Zigmond, capacitous, which derives, I take it, from the Mental Capacity Act (2005), which he mentions in his introductory words. The importance of this consideration is simply this, and it applies not only in Great Britain, but in other countries as well. In many if not most jurisdictions treatment decisions — whether to undertake or to continue treatment — are within the sole province of the individual to decide. As Dr. Zigmond says:
A capacitous person may make decisions for the current time and/or for the future (either directly or via an attorney). There is an absolute right to make an unwise decision — even if that decision will lead to the individual’s death. [my italics]
He goes on to point out that ”arguments in relation to assisted dying seem, to me, to focus on the difficulties.” But, as he points out, these difficulties do not come into play only when a person is making a decision about dying. They are common in other areas of medicine. A capacitous person has a right to refuse consent to medical treatment, or may request to have medical treatment withdrawn, regardless of the consequences.
But now comes the important consideration. A patient has a right to refuse consent to medical treatment, or to the continuation of medical treatment and support, despite the fact that whether or not that person’s capacity to make such a distinction is or is not obvious. But the difficulties of establishing capacity are not, as Dr. Zigmond says, “permitted to stand in the way of the principle [of the patient's right to refuse consent].” And he goes on to make this vital point:
The right to refuse treatment, for any reason, is considered so central to respect for a person’s autonomy, that possible difficulties are not permitted to interfere with this right.
And then, a moment later:
The law makes no requirements about the condition of the patient who refuses treatment. The right to refuse is not restricted to patients with serious or terminal illnesses.
Dr. Zigmond is referring to a particular case in which a patient went to court to have a ventilator removed, a patient who, as Dr. Zigmond says,
Whilst [she] suffered from a serious disability, … did not have an inevitably terminal illness (she could have been kept alive by the ventilator for a long time).
Dr. Zigmond may be referring to the case of Ms B, who was paralysed from the neck down, and was being kept alive, on a ventilator, against her will, by the health authority. The judge, Dame Elizabeth, ruled that
A mentally competent patient has an absolute right to refuse to consent to medical treatment for any reason, rational or irrational, or for no reason at all.
This is a vital point, that people who oppose assisted dying do not seem to recognise. We already accept that people have a right to die, whether they make a decision to die for good reasons or bad, or for no reason at all. If this is already a right of those who, by stopping or refusing treatment, will die, why is it thought so different and so unacceptable that a person with a perfectly legitimate reason for wanting to die should be refused assistance to do so? It is simply unintelligible, in the light of these considerations, why opposition to assisted dying is still being allowed to have the last word.
While Dr. Zigmond goes into the question of people who are deemed to be incapacitous by virtue of mental disorder, which I am not really competent to discuss, I want to end with the question, which Dr. Zigmond raises, about the issues (as his section head says) of “feeling a burden or undue influence.” Many people say that, if assisted dying is legalised, people who are made to feel that they are a burden to the health care system or to their families may come under undue influence so that their decisions are not truly autonomous. Dr. Zigmond’s reply is noteworthy. First, he points out that decisions to refuse treatment or to stop treatment can just as easily be thought to be made under the influence of the very same thoughts or beliefs about being a burden, or may be the result of undue influence from another, as decisions to receive assitance in dying might be, and yet those decisions are protected. But, moreover, he points out:
… personal autonomy means that if I, as a capacitous person, make the decision that I wish to die for the benefit of others (what parent wouldn’t give up their life to save their child?), or in order not to be a burden, then that should be my right. Of course vulnerable people must be protected, but from what?
This is, I think, is a central concern seldom addressed. The issue of protection here, and the question, from what?, is of vital importance. These are the obstacles that religious opponents of assisted dying continue to use to oppose assisted dying, but it is at least as possible and perhaps probable that a person may be under undue influence to stay alive as to opt for assisted dying. Dr Zigmond tells a personal story about his mother. I’ll tell a personal story about mine.
In the Spring of 2006 my mother was rushed to the hospital with a ruptured bowel, because a tumour in the lower bowel had formed an obstruction. She knew of the obstruction, since she had contacted Elizabeth several times to speak about constipation. When Elizabeth told her that she really should see a doctor my mother told her, “Oh, I’m too old for that.” It was a clear indication that, if her condition was very serious, she wished to die. She did not want to receieve treatment; she was almost 92 years old. However, having been rushed to the hospital, the surgeon ignored my mother’s advanced directive, operated, and saved her life so that she could spend the next 9 months dying. Every time I went to see her she would say, “I shouldn’t be here,” meaning that her wishes had been ignored, heroic measures had been taken to save her life, and she would rather have died. That was her intention all along. I never, in all that time, encouraged her to go on living, though, to my knowledge, the rest of the family did. At one point, when she seemed very low, but still holding on desperately, I said to her, in my father’s presence, “It’s okay, mother, you can let go. We’ll look after father.” She smiled wanly, and I never spoke to her again. She died two days later. Of course people must be protected, but from what?