Thank you, Madam Chair.
Thank you for the invitation to appear before the committee. I hope that my experience in conducting clinical research on Alzheimer's disease for the past 35 years will be useful for your deliberations.
I'll make a brief opening statement and then answer your questions.
I can confirm that, in recent years, a number of people in the early stages of Alzheimer's disease have spontaneously expressed their desire to die peacefully, surrounded by their family, at a time of their choosing. For example, I'll read you an excerpt from a document written two years ago by one of my patients, an 84-year-old woman. This document is part of her confidential medical record:
Should medical assistance in dying be added to the advance medical directives, I am asking, with a clear mind, that medical assistance in dying be added to my list of desired care if, having become irrevocably incompetent, I no longer recognize my husband and daughter-in-law. This would be the ultimate indignity for me.
I'm trying to point out that people think many years in advance about the stage of Alzheimer's disease where they no longer wish to keep on living. This also applies to Parkinson's disease.
The stages of Alzheimer's disease follow a fairly predictable pattern and are irreversible. For example, nighttime urinary incontinence, in the absence of an infection or other disease, is known to occur at stage 6, level a, out of 7 stages. People living with the disease and family members who wish to become informed know about these stages. This information is usually provided when people request it. These stages occur over a period of six to eight years, until natural death. A fairly common feature of all these illnesses is that patients develop aspiration pneumonia, often repeatedly, until natural death. The end-stage dementia usually affects people who have been in bed for a year without being able to communicate with anyone.
I have a proposal for the committee. The current text of Bill C-7 refers to dates chosen by the person seeking medical assistance in dying. However, for neurodegenerative diseases, such as Parkinson's or Alzheimer's, the reference points should instead be stages, which people can choose in advance and which families and clinicians will later recognize.
My question is the following. Can the concept of disease stages be added to the bill, rather than a reference to specific dates?
Thank you for your attention.