2016-62, general practitioner, dementia, voluntary and well-considered request, unbearable suffering without prospect of improvement
KEY POINT: role of the advance directive in the case of a patient who is decisionally incompetent as a result of advanced dementia
In 2005 the patient was diagnosed with dementia (Alzheimer’s disease). He was able to function reasonably well for a number of years, but from 2009 onwards his health deteriorated. In the last year before his death – by now he was in his sixties – his condition deteriorated substantially.
The patient had discussed euthanasia with the physician since 2010. In that year he had for the first time written a letter by hand setting out a number of wishes for the future. In 2010 he signed an advance directive, which he supplemented in 2012 after several conversations with the physician, adding a number of more specific circumstances in which he would no longer want to go on living.
Those circumstances were described as follows: if he as a person were to change so much that he felt permanently unhappy, if he were to become aggressive and difficult, if he no longer recognised his loved ones, if he were to end up waiting for death, as had a close family member who also had Alzheimer’s disease, if he were unable to take care of himself and became completely dependent on others, if he were suffering unbearably and without prospect of improvement.
When he was still able to, the man spoke with both the physician and his family on several occasions about his request for euthanasia at some point in the future, and he updated his advance directive.
At a certain point the patient was no longer able to express his request in words, but there were oral and physical expressions that confirmed his wish to die.
His wife asked the physician to comply with the written euthanasia request. At that time, his suffering consisted of cognitive problems, apathy, apraxia (difficulty in carrying out actions), agnosia (inability to recognise/name things or persons) and behavioural changes.
The patient had become completely dependent on his wife for his personal care. When he woke up in the mornings he was completely disoriented and very sad. He could not remember how to get out of bed. When he was helped with his general daily activities, his facial expressions were of sadness and frustration. He repeatedly indicated he could not and did not want to go on. He was now in a situation in which people expected things of him all day long that he no longer understood. He would then panic, or become startled or angry.
He slept a lot. He no longer recognised his children and was no longer aware that he had grandchildren.
At the physician’s request an independent elderly-care specialist examined the patient to assess whether he was suffering unbearably.
The elderly-care specialist was satisfied that this was indeed the case. According to the specialist, the man was now in the situation that he had previously described as unbearable. The physician was satisfied that this suffering was unbearable to the patient and with no prospect of improvement according to prevailing medical opinion. According to the physician, the situation corresponded entirely with the circumstances the patient had described in his advance directive as not wanting to experience.
With regard to the request the committee found that it was clear from the documentation that at the time when euthanasia was performed the patient was no longer decisionally competent. It also found that the physician could be satisfied that the patient was capable of making a reasonable appraisal of his own interests when he drew up his advance directive.
In consultation with the physician, the patient regularly updated the advance directive after it had been drawn up and signed. On several occasions he subsequently discussed his wish to die at some point in the future orally with family and physicians.
When he was no longer decisionally competent, there were verbal and non-verbal signs that he still wanted his life to be terminated. There were no signs to the contrary.
In the committee’s view, the physician had plausibly argued that he was reasonably able to conclude that the patient’s request as worded in the advance directive was voluntary and well-considered.
The committee was further of the opinion that, despite the fact the patient was no longer able to describe it himself, the suffering as described in the documentation was evident and fully matched the content of the advance directive. Several factors played a role in the physician’s process of establishing that the man was suffering unbearably: his own observation of the patient, the process of preparing for euthanasia at some point, which took several years and was guided by him with great care, the conversations with the family, the independent physician’s report and the independent elderly-care specialist’s report.
The committee found that the physician had exercised particular caution, as is recommended for patients in an advanced stage of dementia. This was clear from, for instance, the fact that in addition to an independent physician he had also consulted an elderly-care specialist, who assessed and described the suffering in a way that enabled the independent physician to conclude that the due care criteria had been complied with.
The committee found that the physician had plausibly argued that he was reasonably able to conclude that the patient’s suffering was unbearable and without prospect of improvement. The other due care criteria were also fulfilled.