I regularly inform people of a diagnosis of Alzheimer's disease. That's part of what I do in my work all the time. When they originally receive that information, obviously, it's a source of great distress to them, to their families. They're in a very difficult moment.
One of the things that were recommended by the joint committee was that somebody early on in a disease, such as Alzheimer's disease, would be allowed to write a document saying, “When I reach a certain stage, I would like to be euthanized.” Somebody in that situation is not in an emotional state to make a life-changing decision, but at the same time if they delay it, then they might lose the capacity to sign the document, and so they're forced to sign it while they're still in crisis. That's one side of it.
The other is that people's priorities and preferences change over time. Almost all of my patients come to terms with their disease and they live with it for many happy years.
I was distressed by some of the descriptions of people with Alzheimer's disease. I think to say that some people's lives are so bad that they're better off dead is a very unfortunate thing to say, because I think that all of my patients' lives have value, no matter how sick they are. I just can't imagine the scenario, for example, in which maybe the patient has signed this document and then they become demented enough that they can't make a capable decision. Who's going to decide that now is the time? Is it going to be their children? Is it going to be the doctor? How are their children going to live with that decision once it's made? Nothing is so black and white that it can just be a matter of the document.
In the brief I sent you, I quoted an article by a Dutch academic whose father was euthanized through an advance directive. They had all been pro euthanasia when they signed it and the children all agreed to it, but then they felt that they were prisoners of this document and that it was not what they would have chosen, nor what their father would have chosen when the time came, but they felt obliged to carry through with it.
This is a very complex issue. Which should trump which: the wishes of the patient at the time they have more advanced dementia or this paper they signed when they were well or not so well and they were in crisis?
A lot of issues are raised, and I think it's a very dangerous way to go.