Responsible caring with dementia & euthanasia requests

When you tick off various boxes on your living will document, the ones where you might have dementia are always problematic. Euthanasia in cases of dementia raises even bigger questions of voluntariness.

I have known ‘right-to-die’ supporters who say that if they no longer know what is happening, or who they are any more, then they would rather not stay alive. But I’ve also known other ‘right-to-die’ supporters who say that, if they seem not unduly unhappy, and there are people willing and able to care for them, then they would want to stay alive. A real difficulty occurs if someone has a clear and persistent wish to end their life in the event of severe dementia (with or without active assistance) but then expresses a wish – however ill-formed and confused – to stay alive. In that situation, most carers on either side of the debate agree that one has to respect the wishes or apparent wishes of the person standing before them.

The latest Dutch case involves a woman who, at the precise moment of the application of euthanasia, was not always completely competent. To get some context, it is maybe useful to compare this case with that of a 65 year old man whose euthanasia was reported in 2005. He had had Alzheimer’s disease for three years, and since his diagnosis, had said that he did not wish to endure the full course of the illness. In the previous year he had made repeated requests for assistance to end his life. The doctor had judged him to be suffering unbearably. The man was conscious that he could no longer function independently and faced the future prospect of increasing dementia. Whereas the more recent case involves a woman who it seems had already reached that later stage in the illness.

A decision to end one’s life and a decision to fight on are not equal sides of the same coin. Even less so if a third party is involved. A decision to stay alive is (hopefully) reversible: a decision to die is not. Yet this is complicated by the fact that many people who anticipate an unbearable state in which they would not want to continue (whether physical, such as multiple sclerosis, or mental, such as advanced dementia) know that they would not be able to do anything – either by their own hand or that of another – if they leave it till later. So some people end their lives before they really want to, just to avoid a future state from which they cannot escape.

The Dutch law has a careful and extensive system of review for all applications for euthanasia. But the bare bones can be summarised:

  • The requirements of due care (referred to in Article 293 para.2 of the Penal Code) mean that the physician:
  1. holds the conviction that the request by the patient was voluntary and well-considered,
  2. holds the conviction that the patient’s suffering was lasting and unbearable,
  3. has informed the patient about the situation he was in and about his prospects,
  4. and the patient hold the conviction that there was no other reasonable solution for the situation he was in,
  5. has consulted at least one other, independent physician who has seen the patient and has given his written opinion on the requirements of due care, and
  6. has terminated a life or assisted in a suicide with due care.

There are various safeguards embedded here that would be difficult to replicate in the UK. Primarily, the doctor-patient relationship in the Netherlands is based on the doctor personally knowing the patient over a period of time.

But the other big difference is that the Dutch euthanasia law, in contrast to attempts at legislation elsewhere, focusses on the bigger picture. The aim is to alleviate unrelievable suffering that, in the patient’s perspective, is totally unbearable. There are checks and balances, and review committees to ensure that all other courses (such as appropriate palliative care) have been exhausted. But the objective is to uphold the spirit of good and humane practice rather than a check-box list of who ‘qualifies.’

This is clear in subjective phrases such as, the doctor . . . “holds the conviction . . .”. This might be usefully compared to the English legal test for medical negligence (known as the ‘Bolam’ test) that says, “If a doctor reaches the standard of a responsible body of medical opinion, he is not negligent.” In other words, the doctor is to some extent judged by his or her peers.

Confusion can arise over the fact that medical negligence essentially rests on medical knowledge, and is therefore a medical judgement call that can reasonably judged as right or wrong. But a conviction about a patient’s wishes is not a medical one: it is a human or ethical one. Medical expertise is not a determining factor.

So can the doctor’s conviction (in the Netherlands) be ethically justified? The justification is not that it is made on the basis of medical facts, but that it is made by someone who a) has close personal knowledge of the patient and b) has a doctor’s duty of care. The doctor’s decision is subject to review and criminal sanctions if found wanting, but it means essentially that a human but responsible  decision can be taken in an accountable way.

If governed by more archaic rules, the woman in this case would have had to try to end her life earlier, probably while it still had value to her. We can therefore argue that the more holistic approach of the Dutch system means that she lived longer. Even if this was not the case here (as I suspect it may well have been) the principle holds true, and the Dutch are to be complimented on the sensitive and sophisticated approach.

References and further reading:
First euthanasia in Netherlands of severe Alzheimer’s patient performed (new)
Dutch approve euthanasia for a patient with Alzheimer’s disease (BMJ 2005)
Alzheimer’s disease and life termination: the Dutch debate (Bioethica Forum journal)
End-of-Life Practices in the Netherlands (NEJM study)
21 dementia sufferers killed under Dutch euthanasia law (Christian Institute)
Key Dutch cases (seminal legal debates reported by NVVE)
Dutch law on assisted suicide and ending life on request (statute)

See also: Helium and dementia

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