In this blog post, Dr. David Amies takes a look at the groups of Canadians who are harmed by the late-stage consent requirement in Canada's assisted dying law.
The story of Halifax’s Audrey Parker is back in the news again, following the launch of a Dying With Dignity Canada campaign in her honour. Parker's story highlights in an especially poignant way the problems with Canada’s assisted dying law. Two requirements under the federal medical assistance in dying (MAID) legislation are particularly problematic: the ban on advance requests for assisted dying and the need to provide informed consent at the very last moment before a clinician provides MAID.
- Tell the federal government to pass Audrey's Amendment without delay
- Related: New campaign calls for Audrey's Amendment to Canada's assisted dying law
Audrey Parker was a 57-year-old woman with an incurable breast cancer. She was suffering intolerably and had no hope of a cure. She applied for MAID, and was assessed and approved for the procedure. She had always been a confident, lively and gregarious person, and in spite of her condition, she decided she wanted to spend one last Christmas with her family and friends. She feared that this development would cause her to lose the capacity to give informed consent for MAID if she put off her death until after Christmas. Unwilling to take that risk, she chose an assisted death weeks earlier than she wanted to and died on Nov. 1, 2018.
Her circumstances and dilemma provoked a good deal of sympathy and anger at the law as it is written. Why, it was asked, could she not have given permission for MAID to take place on a date of her choosing and have it occur even if the spread of her disease rendered her incapable of giving last-minute consent? After all, the delay would have been very brief.
Contrast this situation with individuals who are told that they are in the very earliest stages of dementia. Such persons will quickly discover that their fate will involve a slow, steady, remorseless loss of capacity, possibly lasting for 10 or more years. At first, they may be mildly forgetful and unable to remember where they put their keys or wallet. Towards the end, they may be disoriented in time, place and person, unable to feed, wash and dress themselves, or look after the intimate details of daily living. If an advance request for assisted dying were allowed under the law — which it currently isn’t — a person may decide that these inevitabilities are intolerable to contemplate and may, therefore, decide to make such a request when certain milestones have been passed (for example, the inability to recognize their family and friends, or not knowing who or where they are, or losing the ability to care for themselves).
The issue of allowing advance requests for assisted dying continues to be a topic of discussion and study. It has been argued that the individual who made the advance request could be a different person by the time he or she has arrived at the end stages of the dementia journey. But it is the “first" person who wants to make the decision about MAID for the "second" person they will become years later.
Clinicians who have experience dealing with patients suffering from advanced dementia observe that their behaviour and demeanour are very variable from day to day. On Monday, they may be sitting in a chair with a vacant expression on their faces and unable to engage in any way. On Tuesday, they may have been stimulated by music or contact with a therapy dog and seem almost like their old selves. MAID-providing clinicians asked to act upon an advance request drawn up years previously could be faced with an almost impossible choice: “When I saw him yesterday, he looked totally out of it. But today, he’s smiling and gives the impression that life is still worth something. There is no obvious evidence of intolerable suffering.”
"Assessed and approved"
Unlike some dementia patients, however, there is essentially no chance that people with incurable conditions like Audrey Parker will eventually progress to an intermittent, seemingly “happy” state. Unbearable pain and suffering was the only inevitability for Audrey.
How will legislators amend the law to deal with the group of Canadians in Audrey Parker’s category, whose rights are at risk under the federal law? Audrey had already been assessed and approved for assisted dying; she had already completed the rigorous screening and approval process. She knew she was dying, but did not want to go weeks earlier than absolutely necessary. She also knew that she could lose capacity at any time and feared that she would lose her right to MAID altogether.
This situation is quite different from the patient with dementia, who could not bear the thought of being mindless and helpless and so made a request for an assisted death years before it was going to be enacted. Audrey wasn’t going to live for years; she simply wanted more weeks.
Consider, now, the dilemma of the clinician faced with performing MAID. The process is straightforward enough with someone in Ms. Parker’s circumstances but more complex with certain dementia sufferers. Ambiguity surrounding the assisted dying law puts clinicians in an unenviable position because if they are found to be in breach of it, they face serious sanctions.
I am wholly in favour of Audrey’s Amendment, as well as changes to Canada’s present law on assisted dying that would entertain advance requests. This piece has been written to try and throw light on the practical problems that surround the notion, and the quandary lawmakers, MAID providers and the general public face with such ideas.
Dr. David Amies is a retired doctor in Lethbridge, Alta., and a member of DWDC's Clinicians Advisory Council.