Table 3 Euthanasia in advanced dementia: Examples of interviewee responses

Unbearable suffering

If you see elderly people who have gone downhill and behave like small children, you say, “I don’t want that”. So then there has to be the option that if you become like that, you can say, “Just give me a pill or an injection or whatever”. (member of the public)

I find it very difficult to determine whether a patient with dementia suffers unbearably. I tried to find that out in my father’s case, but I never got an idea if he, and all the patients around him of course, if they are suffering? (member of the public)

I see people and think: I don’t think you are suffering, the family is suffering and others around him, because the person goes downhill, but at that moment I can not assess if the patient is still suffering that much and if it is really unbearable. (general practitioner)

Is psychological suffering also unbearable suffering? Is someone who has dementia, but doesn’t know that about himself, is he suffering unbearably? (medical specialist)

Voluntary and well-considered request

Because in my view, one should be able to decide deliberately that one’s decision still stands. That it hasn’t changed. And an elderly person with dementia cannot do this. (elderly care physician)

I always explain, if someone is suffering from dementia, an advance euthanasia directive does not apply. The person cannot ask him- or herself for euthanasia anymore. I cannot kill anyone who does not, who maybe doesn’t want that anymore now. (elderly care physician)

Communication

So it is not as much the directive but rather that you have to be in touch with the patient and have to have that conversation about whether you indeed consider your life to be unbearable. (elderly care physician)

Look, such a euthanasia directive exists, but that request must of course be repeated at the moment itself, otherwise you could come up with such a directive at any time and say, well, now it has to end. (elderly care physician)

Societal factors

There are situations known where they still have to get the people out of bed at twelve for lunch, they have no time, well then they lie, for example, the whole night in a diaper full of shit. You don’t want that kind of life and that there is nothing you can do. Well then you feel embarrassed right? (member of the public)

There are people who are just lonely and never have any visitors. But the moment you accept that those people then should get euthanasia, then you’re at the wrong end of the process. Instead, you have to make sure that it [loneliness] doesn’t occur anymore. (general practitioner)

Ethical considerations

Some tendency will develop in the Netherlands saying that the lives of people with Alzheimer’s disease living in a nursing home don’t count anymore and that a life like that is not meaningful anymore. And I’m against that. There is a noticable change of view on Alzheimer. And that is one of the reasons why I oppose to euthanasia in Alzheimer patients. Because a judgement will be made: this life is not meaningful anymore. (general practitioner)

The physician’s role

If someone asks me „If I become demented then you really have to give me an injection or whatever“, well, then I can say „I’m sorry, but I’m reluctant to do that. I was taught to cure you and not to let you die, but let’s agree that if you will be in such a condition and you have dementia and suffer from a serious airway infection, then I will not let you live any longer.“ (elderly care physician)

The role of the law

I think it is inconsistent, look, such an advance directive is legal, but the law also states that the physician has to be convinced of the hopelessness and unbearableness of the patient’s suffering. And if you can’t have a conversation about that, then you can’t get convinced and therefore can’t perform euthanasia. (elderly care physician)