There are many problems that neurologists are faced with, with patients with chronic neurological diseases and it might not only be the reduced capacity, it might also be reduced means of communication for example, like for example dysarthria or other forms of symptoms that limit communication. So it’s not only reduced capacity. Our experience is that in end-of-life decisions people with dementia remain in a very advanced stage capable of discussing this...
There are many problems that neurologists are faced with, with patients with chronic neurological diseases and it might not only be the reduced capacity, it might also be reduced means of communication for example, like for example dysarthria or other forms of symptoms that limit communication. So it’s not only reduced capacity. Our experience is that in end-of-life decisions people with dementia remain in a very advanced stage capable of discussing this. Problems that do occur are that the patient has maybe in the beginning of the disease immediately after making the diagnosis has a different concept and appreciation of what the end of life would be. So we call this the “other self”. The patient develops into another person that has a different appreciation. And now the question is whether people that would like to have medically assisted dying when they are in an advanced stage of dementia, whether they could foresee this when immediately after making the diagnosis or receiving the diagnosis, whether they could control this through sort of an advanced directive. There’s two different schools, let’s say, there’s two different appreciations in the neurology community. Either it’s through an advanced directive that is clear and that states at this point in the development of the disease I would like to be helped in dying, period. There’s another school that states we have to follow up the patient and see how the patient develops during the course of the dementia and if the appreciation and the decisions of the patient change throughout this course of the dementia we should also take that into account. In addition to that, while the first school does not need unbearable suffering in advanced dementia as a criterion, the second school states that there should be unbearable suffering, you know, in order to provide medically assisted dying. Those are the two, let’s say, opposing positions. If we’re talking about dementia, I think the one major misconception is that patients, as soon as they receive the diagnosis of dementia, that they’re not capable of discussing these end-of-life decisions anymore. This is completely untrue. That’s one major misconception. And as I’ve stated before, the fact that people in a very advanced stage of dementia are still capable of discussing these decisions is also something that is not appreciated by many neurologists.
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