Granting people with dementia the right to ask for euthanasia when they are still capable of making the decision will free doctors from the task of taking the decision for them, says Klaas Rozemond, associate professor of criminal law at Amsterdam’s VU University.

Once again, a medical disciplinary board has said the actions of a doctor involved in the euthanasia of a patient with dementia were negligent. On August 17 the Amsterdam disciplinary board decided that a doctor who works for the Expertise Centre Euthanasia was wrong not to take the opinion of an independent colleague, known as a SCEN doctor, into account.

This colleague could not establish ‘unbearable suffering’, which is one of the conditions for euthanasia in the Netherlands. After consulting six colleagues at the expertise centre, the doctor in question decided to ignore the SCEN doctor’s opinion and administered the euthanasia anyway.

The medical disciplinary board is clear on the issue that the opinion of a SCEN doctor is not to be dismissed lightly and that the six colleagues at the centre cannot be qualified as independent.

Moreover, based on the statements made by these doctors, the board was unable to conclude that the person in question was suffering unbearably. It would seem that the conditions regarding this point were not sufficiently clear, prompting the board to issue the doctor with a warning.

The ‘coffee case’

A comparable case was brought before the The Hague disciplinary board in 2016. The board ruled that a doctor at a residential home had been wrong not to discuss her intent to end the life of an elderly resident with dementia with the patient in question.

Instead the doctor put sleeping medication in the patient’s coffee and then proceeded to carry out the euthanasia by administering the lethal medication intravenously. This, the board said, contravened the patient’s right to self-determination.

That judgement was overturned this spring by the Supreme Court which stated that the disciplinary board had interpreted the patient’s living will too narrowly. The Supreme Court did not pronounce on the doctor’s duty to discuss the euthanasia with the patient and so the warning issued to the doctor in the case still stands.

This case too shows that the statutory due care criteria on this point are not sufficiently clear. It means that the disciplinary boards have to interpret the rules and that they in turn can be corrected on some points by the Supreme Court.

Dementia

So should doctors continue to administer euthanasia to people with dementia under these circumstances? Without clear due care criteria,  new warnings by medical disciplinary boards and subsequent decisions by the Supreme Court can only be a matter of time.

The root cause of the problem lies in euthanasia for people with dementia who had previously made living wills. The care criteria have not been made explicit enough in the euthanasia legislation, and an additional problem is that these written statements are often open to more than one interpretation.

In some cases patients are no longer capable of stating clearly whether or not they want to go through with the euthanasia, or indicate if they are suffering unbearably. The result of all these doubts and uncertainties is that doctors are faced with the task of interpreting the due care criteria, the living wills and the oral wishes of their patients.

Interpretation

In these cases the volition and suffering of the patient as such are not the determining factors at the moment of euthanasia but the interpretation of them by the doctor. Interpretations may vary from doctor to doctor and that leads to arbitrary decisions. Whether or not euthanasia is allowed depends on the doctors involved.

That arbitrariness is an important argument to stop administering euthanasia in cases like these. That does not mean euthanasia for people with dementia should be ruled out but rather that the possibility to administer it at an earlier stage should be widened.

In the most recent case the patient had told her family doctor she wanted euthanasia immediately after she had made a living will. The doctor did not establish unbearable suffering and therefore refused. But neither could unbearable suffering be established later when the doctor at the expertice centre wanted to administer the euthanasia.

Early stage

If the possibility of allowing the administration of euthanasia at an earlier stage were to be widened, there would be no confusion over the statutory due care criteria. The annual reports from the euthanasia watchdog Regionale Toetsingcommissies Euthanasie show that most people with dementia who request it are given euthanasia at a time when they are still able to make the decision.

These people have the fundamental right to determine when they will end their lives. According to the Supreme Council they also have the right to die with dignity. It is an infringement of these rights to oblige doctors to tell their patients: you may want euthanasia now but we have to wait until your suffering has become unbearable.

The patients then go on to deteriorate so much that their wish and their suffering can no longer be established. Therefore doctors should be able to tell people with dementia: I will help you when you tell me you are ready.

This article was published earlier in the NRC