Assistance in Dying: Should it be a matter of choice? Or should we simply expect doctors to murder their patients when the going gets rough?
Posted by Eric MacDonald
Thanks to Jerry Coyne for referring me to this report in HuffPo Religion about the euthanasia of a woman suffering from advanced dementia. The National Post also comments on the story under the headline: “First euthanasia in Netherlands of severe Alzheimer’s patient performed.” Under the HuffPo piece is a poll, the results of which stand as follows (as of 3:40 pm Atlantic Time, Sunday, 13th November 2011):
What do you think of euthanasia?
I think it’s acceptable in certain cases. 69.95%
It’s never OK 19.02%I’m undecided. 11.04%
Notice the small percentage of those who think that euthanasia is never okay. While online polls of this sort are generally not very reliable, the results at least suggest that people’s religious persuasion does not heavily influence their response to this question. Given that the Roman Catholic Church and evangelical Christian churches and organisations are absolutely opposed to assisted dying in any form, and that there are more than 19.02% of them in North America, to go no farther, this suggests that many in this conservative group of religious believers are more compassionate than their beliefs.
For my present purposes, however, the story of the first person with advanced dementia to be “euthanised” — even though, at the time, she was no longer in possession of her faculties, and could not, therefore, at that time, consent to the act — is important. The decision was made after consultation with doctors and her family in response to the woman’s known support for euthanasia and her own advanced directive concerning assistance in dying. As DutchNews.nl reported:
The woman was a long-time supporter of euthanasia but became unable to make this
clear as the disease progressed. Nevertheless, a medical committee approved her
right to die, the paper [Volkskrant] says.
The important point is that this acknowledges that choice, even choices made at a time before the person had declined to the point where they can no longer give informed consent, is the primary consideration in deciding whether a person should receive help in dying. There is, however, an error in the reporting. The Dutch legislation does not limit assisted dying only to those who are suffering unbearable pain. There are other forms of distress and suffering that may be legitimate reasons to ask for and receive assisted dying. Indeed, the experience in the State of Oregon is that unbearable pain is by no means the main reason that people seek assisted dying. Questions of dignity, independence, and conditions for a worthwhile life rate very high in the reasons that people give for seeking assistance in dying.
There is a widespread idea that a person who is in a state of advanced dementia is not, for purposes of medical decision, the same person who made the decision regarding assisted dying some time before, and therefore the decision made earlier and witnessed cannot now (in the later case) constitute consent. Clearly, this is an area where conceptual clarity is vital, since we do not want to say that human beings can be assisted to die even though they would not, had they been competent to choose, consent to such assistance. This would be, within the normal acceptation of the term, involuntary euthanasia. But this is a different case altogether. A person who, when in possession of all her faculties, and is considered able to make a competently rational, informed decision, should be able to decide what is to become of her when she is no longer able to make this kind of decision.
Let’s put this in personal terms. If the time comes that I am essentially a living body without a mind, then I do not want to be kept alive any longer, and I would like those who care for me, whether the person to whom I have given power of attorney, or the medical staff who are in charge of my care, to assist me to die in the quickest and most painless way possible. I do not want to be someone who wanders about unable to recognise my surroundings or participate in the pursuits that give my life value. However, if I cannot have the assurance that this will be done for me, then I must anticipate this situation by some time, and thereby possibly miss out on part of my life that could have been well lived.
This, as I have said, happened to my wife Elizabeth. While she found the conditions in which she was living straitened and sometimes undignified, I am convinced that, had she had the option of bringing her life to an end at her own choice and at a time specified by her, she would have continued living for some time. I have no idea how long she would have considered her life worth living, but she had not reached the end at the time that she was helped to die by Dignitas in Zürich. When I suggested that she wait a little longer, she said, a bit peremptorily, “I’m sorry, I cannot stay.” She was terrified of leaving the decision too late, and being trapped in her body, as so many people with MS whom we had known had regarded their situation. And so it was that we ended up in Switzerland where she received the help in dying she so earnestly desired.
Nevertheless, Debbie Purdy’s point in the following video (which accompanies the HuffPo piece linked above, and is a segment of this FORA TV programme) is important. Debbie Purdy is an English woman with MS who is, perhaps, singlehandedly responsible for changing the prosecution guidelines in England for those who have, from compassionate motives, helped someone to die. Her victory before the High Court set a precedent which changed the attitude towards those who help a person in serious distress to die.
Several points that Debbie Purdy makes here are important. First, there is the inconsistency in the law which makes suicide legal, but assisting a suicide a crime with a maximum penalty of fourteen years. (The Swiss have this right. Switzerland legalised suicide (in 1941!), and then made assisting a suicide subject to punishment if done from self-serving motives.) This means that in places like Britain and Canada it is illegal to help someone do something that is perfectly legal. Then, there is the point that the illegality of assistance means that many people may (and in fact do) shorten their lives more than they would if they could receive assistance at a time and in a manner of their own choosing. And then, third, there is the fact that, of course, doctors being no less compassionate than the ordinary person, there will be many cases where, at the end of life, doctors will make this choice for their patients. It is illegal to ask the patient if they want to receive help in dying, so the only choice a doctor has, if he thinks his or her patient is suffering unduly at the end of life is to help them on the sly. (This is actually recommended by the Church of England report on assisted dying. Doctors are expected to disobey the law when their compassion is engaged, and the church thinks it likely the courts will not find fault with acts done from such motives. In other words, since the report opposes legalisation of assisted dying, the church expects doctors (technically) to murder their patients, and then hope that the courts will be gentle with them!) The result is, as Debbie Purdy points out, that doctors make choices for people that are not theirs to make. Arguably, in order to be compassionate, given the laws as they are, doctors sometimes must become murderers (at least in the eyes of the law).
This puts a new light on claims such as those of Dr. Pereira of Ottawa (to whom I have referred several times already in earlier posts) who considers assisted dying legislation socially dangerous. He believes that, once we start down what he considers this slippery slope, there will be nothing to stop us, and people who should not die will end up dead. But surely the point here is similar to the one made regarding abortion. Just because abortion is illegal did not mean (for societies where it is now legal) that abortions never occurred. I do not have the reference now, but it was calculated by one author that in Canada there were as many illegal abortions before the law was struck down by the Supreme Court as there are legal abortions now. Just because assistance in dying is illegal in Canada does not mean that it does not happen, and that all doctors refuse to help their patients to die peacefully. Sometimes this may be done with the patients’ knowledge, and the knowledge of the patient’s family, but more often it is done when the doctor believes that the patient has endured enough suffering already. It is done as an act of mercy, and as a result of force majeure, that is, as a result of the compelling nature of the case, when there seems little else that medicine can do, yet it would be extremely dangerous for the doctor if others knew that such assistance had been given. Dr. Pereira complains about the number of cases of involuntary euthanasia there are in the Netherlands, where there is some control over what doctors can do at the end of life. He thinks this shows that there is a dangerous slippery slope down which the Dutch are sliding, even though in surveys the number remains fairly stable from year to year. We have no idea how many people are being helped with or without their consent in Canada. This should trouble Pereira much more than it does.
I have no doubt that Dr. Pereira will take the case reported in HuffPo as further evidence of his imagined slippery slope. The authorities in the Netherlands, he argues, are continually expanding the compass of the assisted dying legislation, first, with the Groningen Protocol, which permits euthanasia for children, and, in particular, newborns, under strict guidelines, and now, it seems, not only allowing advanced directives — which were already recognised as valid in the Dutch assisted dying legislation — but admitting persons who are no longer in principle capable of deciding for themselves. And while I agree with Pereira and others that assisted dying legislation must be monitored carefully, and not expanded without regard for the consequences, there is no reason to rule out reasonable extensions of the legislation to cover cases not considered before. For someone like Pereira, who does not think anyone should be helped to die in any situation, and accepts the Roman Catholic position that this is absolutely forbidden, regardless of the consequences, each such extension will seem to exacerbate the wrong that is being done; but for those who may increasingly find life unendurable, such extension may seem a blessed relief from enforced misery. It is always important to remember, when we are talking about such things, that those who oppose assisted dying in principle will see problems everywhere that other people see solutions. This is probably why increasingly, people support assisted dying, as is indicated in the straw poll at the end of the HuffPo story. Unfortunately, the wording is too open to interpretation, so it is hard to know what people are really supporting when they agree that euthanasia is “acceptable in certain cases.”