On November 1st, Audrey Parker died in Halifax, even though she would have preferred to live for weeks or even months longer. Ms Parker had Stage 4 breast cancer, which had spread into her bones and brain. She wanted a medically assisted death (MAID) and had passed all the requirements for that. However, she risked becoming incompetent, in which case, under current Canadian law, her prior wish and approval for MAID would be invalid.
As she said: “Had late stage consent been abolished, I simply would have taken my life one day at a time.”
But, with late stage consent required, she chose to end her life on her own terms if not on her own timetable, last week, at home, surrounded by friends and family.
Ms Parker’s situation is not unique. Organizations like Dying with Dignity have long called for an amendment to remove the need for late stage consent for MAID patients who have already consented and been approved.
How does it work now?
Canada passed Bill C-14, which amended the Criminal Code and other statutes to permit medically assistance in dying, more than two years ago. While it opened the door to MAID, it set out stringent requirements that had to be met in order for someone to access medical assistance in dying.
Anyone wishing MAID must be at least 18 years of age, have a “grievous and irremediable medical condition,” be making the request for assistance in dying voluntarily and give informed consent. They must also be eligible for government-funded health insurance in Canada.
In order to have a grievous and irremediable condition, a person must meet four requirements:
- Their illness, disease or disability must be serious and incurable
- They must be in an advanced state of irreversible decline in capability
- Their physical and psychological suffering must be intolerable to them, AND
- Their natural death must be reasonably foreseeable
The final element, and it is this that has trapped Ms Parker and many others, is that the person must be capable of providing informed consent for MAID at the time it is provided; literally at the moment the process is underway.
Advance directives vs advance requests
The language we use to talk about making plans in the event of future incapacity can be confusing. At this time, under provincial/territorial jurisdiction, people can prepare Advance Directives (ADs) — sometimes called powers of attorney for personal care or living wills — which give instructions about medical treatment they would or would not consent to in the event they are not capable of providing those instructions at the time they are needed. Those ADs can appoint another person to make decisions on their behalf as well as spell out exactly what they want and don’t want. An AD could, for instance, indicate that a person would not want a blood transfusion, to be fed by tube or spoon or to be kept alive on a life support system. However, an AD cannot stipulate access to a MAID.
MAID falls under federal jurisdiction and, as noted above, requires that the individual be able to consent at the time of death. A number of individuals and organizations have called for reforms that would allow an individual to prepare an Advance Request (AR) to ensure that their wish for MAID would be honoured even if they later lost the capability to provide late stage consent.
Jocelyn Downie, a professor at Dalhousie University’s Faculty of Law who specializes in health law ethics, proposes that people who are competent, after receiving a diagnosis of a condition that is grievous and irremediable, should be able to make an AR that will hold even if they later lack the capability to provide consent.
Her argument, which she put forward on CBC’s The Current last week, is that the present law forces people like Audrey Parker to choose between ending their lives earlier than they need to or relying on an AD to, for instance, avoid assisted eating and drinking, which results in a slow and unpleasant death. As she put it, with an AR it is the patient rather than a third party who bears the risk of being wrong.
Other perspectives
There are other perspectives, of course, which were also explored on The Current. Rightly, there are concerns that third parties who do not have the dying person’s best interests at heart may manipulate the process of assisted dying. There are also concerns that none of us can know today, while competent and capable, what we might find tolerable or intolerable when we lack competence and capability; that something I find intolerable today may be quite acceptable to me later, when I am not able to express my wishes, so I should not be bound to a decision I make today.
This is a compelling argument, and one I have thought about a lot as I watch my mother’s descent into dementia. My “old” mother, when she saw someone as she is today, would tell us to “shoot me before I get like that.” But what would my “new” mother say? I don’t know. Some days, she seems quite content in the very small world she now inhabits. Other days, she seems discontent, confused, unhappy, frightened or angry. Sometimes she will say outright that she wishes she were dead. But, even though my pre-dementia mother was in favour of MAID, she never will be able to access it, even if she develops a grievous and irremediable medical condition.
An expert panel is expected to report to the federal government on the issue of Advance Requests by December, which, while it will not provide recommendations, may provide some guidance to a future parliamentary review of the legislation.
Where does this leave us?
Until last spring I had been without a will or powers of attorney for many years. When I finally sat down with a lawyer to take care of this, we dealt with the will in a matter of minutes, but writing the power of attorney/advance directive that I wanted took a lot longer. I was very appreciative of the guide provided by Dying with Dignity. My AD may be the longest in history, as I tried to anticipate every situation in which I would not consent to treatment, but I was still frustrated by the reality that I could not write a legally enforceable Advance Request for MAID.
I understand the complications and ethical challenges, but I firmly believe that I should be able to decide now, while I am fully competent, the circumstances in which I wish to die with medical assistance. If I lose the capability to affirm my decision at the time, I want to ensure I can have medical assistance in dying. After all, I am the one who will die and, once I am dead, it will be too late for me to have any regrets.
If you agree with me, now is the time for action. We need to let this government know that we would like to see amendments to the current legislation, because there may not be the political will to make those changes after the federal election next fall.
As Audrey Parker wrote in her last note:
“Please send your MP a note asking he/she to support Audrey’s Law and abolish late stage consent. . . Dying is a messy business. . . I and only I can make that decision for myself. . . I’m not going to wait until I lose myself . . . I just can’t gamble with my end of life.”