By Eva C.A. Asscher and Suzanne van de Vathorst.
On September 11th 2019, a verdict was reached in the first prosecution of a doctor for carrying out euthanasia in The Netherlands since the 2002 Termination of Life on Request and Assisted Suicide (Review Procedures) Act was passed. The case concerned a patient with severe dementia from Alzheimer’s disease who had written an advanced euthanasia directive (AED) when she was still competent (the case is described in more, but incomplete, depth in Miller et al 2017).
The doctor was acquitted and the criminal court found she had in fact met all the due care criteria laid down in the Act. The Dutch euthanasia review committees who advise about prosecution had come to a different conclusion: they found the clarity of the wording of the AED lacking, they required confirmation at the time of euthanasia that she still wanted to die, and had concerns about the manner in which the euthanasia was performed.
The judgement clarifies the requirements for euthanasia on the basis of an AED in the Netherlands: the AED can be interpreted on the basis of the (reported and recorded) context of the request laid down in the directive, and does not need to be confirmed by the incompetent patient. However, the patient does need to be suffering unbearably and hopelessly.
Wording of the AED
The judgement was that the AED was clear enough, especially in the context of the patient’s on-going conversation about euthanasia with her GP and a discussion of her wish to be euthanised and the AED with her treating gerontologist at a time when both the GP and the gerontologist judged her to be competent.
The passage of the AED which raised concerns was the so-called dementia clause:
“I would like to use the legal right to be given voluntary euthanasia, when I think the time is right. I do not want to be placed in a nursing home for elderly people with dementia. I want to say good bye to my loved ones in a timely and dignified manner. My mother in her time had been in a nursing home for 12 years before she died, so I have close experience of it. I know what I am talking about. I definitely do not want to experience this, it has traumatised me severely and really saddened the whole family. , that when the quality of my life is so low, that at my request euthanasia will be performed.”
The concerns hinged on the implied wish to choose her own time of death in the clause, while at the same time definitely stating that she did not want to be placed in a nursing home.
The court judged that her desire for euthanasia once she needed to be admitted to a nursing home was clear, even though she might have preferred to be aware enough to have chosen her own time prior to this. In the thinking of the court, this statement must be interpreted in the context of her repeated discussion and confirmation of her desire with the GP (after the AED at each 3 monthly check up of her blood pressure), her stated wish to the gerontologist, and her repeated conversations with her husband and daughter.
Moreover, the court judged that oral confirmation of the actual wish to have euthanasia performed is impossible for a patient with severe dementia, who can neither understand her own disease, nor death and euthanasia. The court noted that this is not required by law, legal history, or case law, and is therefore moot.
What does it mean for the Dutch practice?
This judgment means that patients with advanced dementia can be granted euthanasia on the basis of an AED, written while still competent. This AED does not have to have the clarity sought by the euthanasia review committee. Instead the AED can be read and interpreted in the context of the conversations with the patient (noted in the medical files) and the testimony of the family. This means that not everyone needs to consult a lawyer to write an AED, but instead should express their preferences for euthanasia repeatedly, clearly, and orally to their physician and others, while still competent.
Of course, the other due care criteria contained in the Act still stand. For instance, these patients need to have been informed about their situation and their prognosis at the time of making the AED, when they were still competent. The judgement does not mean that apparently happy people with dementia will (or even can) receive euthanasia in the Netherlands. For a physician to perform euthanasia, he or she must be convinced the patient in question is suffering unbearably and hopelessly at the time of the euthanasia. There was absolutely no doubt about the suffering of the patient in this case.
The end result of this judgement is that AEDs still function for patients with dementia, for now. The prosecution is considering appeal.
Authors: Eva C.A. Asscher and Suzanne van de Vathorst
Affiliations: Department of Medical Ethics, Amsterdam UMC location AMC (EA and SvdV) and Department of Medical Ethics and Philosophy of Medicine, ErasmusMC (SvdV)
Competing interests: Both authors receive funding from the NVVE