In his final post for the DWDC blog, Dr. David Amies examines the Council of Canadian Academies’ report on the possible implications of extending assisted dying access to individuals whose right to choice is threatened by the ban on advance requests.

Regular readers of this blog will know that the federal government asked the Council of Canadian Academies (CCA) to review certain aspects of its medical assistance in dying (MAID) law that came into effect in June 2016. I have previously reviewed the CCA reports on MAID for mature minors and MAID for individuals whose sole underlying medical condition is a mental disorder. The third and last report considers whether or not advance requests for MAID (AR for MAID) should be accepted as a trigger for medical assistance in dying.

One news story that attracted a good deal of media attention last year highlights the harms of prohibiting advance requests. Halifax’s Audrey Parker, a 57-year-old woman suffering from advanced terminal cancer, was assessed for MAID and found to be eligible for the procedure. She wanted to live to enjoy one last Christmas — her favourite time of year. Unfortunately, however, she was told in the weeks leading up to Christmas that her disease had spread to her brain. Fearing that this could bring about a loss of mental capacity, she felt that she had no option but to die weeks earlier than she would have liked, on November 1, 2018.

This story draws attention to a requirement in Canada’s medical assistance in dying law, namely that people seeking to access it must be able to confirm their wish immediately before the procedure. Audrey Parker, who was in full command of her faculties, feared that the sudden spread of her disease to her brain could render her incapable of giving final consent before the procedure.

• Webinar replay: Exploring the CCA's reports on assisted dying
• Webinar replay: Digging deeper into the CCA's reports on assisted dying

A flaw in the law

Since the law’s inception, a good deal of discussion has taken place about this late-stage consent requirement. Many have expressed the view that, should they fall prey to dementia, they would not wish to carry on with their lives to the bitter end. They ask why they cannot write a document that lays out how they wish the end of their lives to be managed. In other words, why is it not possible for a person to lay out in writing that when their disease has reached a certain stage (e.g., inability to recognize relatives or spouses, inability to care for their personal needs) their previously recorded wishes cannot be acted upon and MAID be carried out? Were such a provision to be contained in the law, Audrey Parker’s death could have been managed differently.

It is now necessary to address a semantic point. Advance requests for assisted dying differ from advance directives. (Ed. Note: The name for this document varies by province or territory. To keep things simple, we will refer to these documents as “advance directives.”)

An advance directive is a document drawn up by persons when they are in full command of their faculties. By its means they can decide and express in advance how they wish to be managed in the event of a sudden medical catastrophe. Would they want CPR, artificial hydration and feeding, blood transfusion, heroic surgery and so on, or would they want comfort care alone and so allow nature to take its course? Such a directive also allows them to appoint a substitute decision maker who can make important decisions on their behalf when they no longer can do so personally. Note that decisions made through such a directive may lead to the patient’s death. In most provinces, advance directives have legal standing.

Exploring advance requests

An advance request for MAID would be strictly a request for an assisted death that’s made by a competent person that could be honoured later, after they have lost capacity. Such requests are currently prohibited.

The distinction between following the instructions in an advance directive that leads to the patient’s death and carrying out an advance request for MAID is an important one with significant ethical and moral considerations. The CCA panel considered these distinctions very carefully. The former allows natural death to take place without any positive actions by third parties. The latter involves active intervention by others.

Today, more and more people want control over the end of their lives. They wish to avoid personal suffering as well as the suffering that might be inflicted upon their families if forced to watch them go through the remorseless process brought about by dementia, for example.

Dr. David Amies

It is important to consider how timing might affect the ways in which an AR for MAID might operate. Audrey Parker, for example, had been approved for MAID but wanted to delay it in order to celebrate one last Christmas with her family. Should she have lost capacity and failed to regain capacity during the waiting period requested by her, her eligibility would have been lost. That seems to be hard and many might think that in such a case some latitude could be allowed or even legislated for.

Compare her situation with someone who formulated an AR for MAID in the very earliest stages of dementia and for whom several years elapsed before the stage was reached where family was no longer recognized or the ability to take care of personal needs had been lost  — factors that might have been written in the advance request. Obviously, the task of the MAID providers in such a case would be more onerous.

It seems to me that, of the three questions that were put to the CCA, the one to do with advance requests was the most difficult and nuanced. It is entirely arbitrary to deny those who have not reached the age of majority the right to receive MAID. Likewise, to make a hard and fast distinction about the degree of dis-ease (sic) that a person with end-stage cancer endures and one whose problems are psychiatric in nature is questionable. Both are suffering greatly.

• Read the CCA's reports on assisted dying
• Related: DWDC responds to release of federal studies on assisted dying

To change the law in favour of accepting advance requests for MAID is more complicated. The feelings of the families of the sufferer and those of the MAID team enter the equation in ways that are different from other situations involving MAID. It is likely that next of kin would be consulted and the medical team could be made uncomfortable if they detected any lack of agreement among the family members. At present, in all other cases, MAID teams ask for and obtain consent from the patient immediately before the procedure goes ahead. But where MAID is performed in response to an advance request, this would not happen. For some teams, this factor could be a source of additional stress. For reasons such as these, any changes to the law will require very careful drafting.

Let us return to the story with which this piece began. To have obliged Audrey Parker to take the course she did seems to be arbitrary and cruel. I expect to see changes that would accommodate such persons as Audrey Parker fairly soon. I hope that as we as a country gain more experience with medical assistance in dying and become increasingly comfortable with it as a legitimate medical measure, then the law will evolve to include those with capacity-eroding conditions like dementia. We must all hope that the delay will not be too long.

We have already seen in the three years since MAID legislation has been in effect how it has grown more flexible and inclusive. This evolution will continue. By the way, it is worth noting that advance requests for MAID are permitted in Belgium, the Netherlands, Columbia, and Luxembourg. To date, they have been used very sparingly and some cases have been reviewed unfavourably by oversight committees.

A farewell

Finally, a personal note. I have written several dozen pieces for the Dying With Dignity Canada blog during the past few years. This one is to be my last. I have enjoyed the time I have spent commenting on various aspects of MAID as it has developed in Canada, but all things come to an end and I am firmly putting the cap on my fountain pen! Before I go, it would be churlish of me not to acknowledge the valuable help given to me by Rachel Phan and Cory Ruf at the DWDC national office with their editing skills. 

Thank you and goodbye.

Words cannot express how grateful Dying With Dignity Canada is to Dr. David Amies for his many years of service and dedication to our organization. We and our supporters from coast to coast will miss his signature candor and insightful commentary. Thank you for everything, David!

Join us in taking a stand: Tell your candidates to commit to restoring the rights of Canadians who are actively discriminated against under Canada’s flawed assisted dying law