Most everyone would like to have some say about how they die. And there’s a legal tool that allows that to be theoretically possible.
Advance medical directives (AMDs) are documents that allow individuals to state, ahead of time, whether they would accept or refuse specific “lifesaving” medical interventions if they become incapacitated. These documents have many benefits: They can help avoid unwanted, unnecessary procedures near end-of-life; they can stave off ugly family fights; and they help health-care providers avoid a lot of stress and second-guessing.
But what should AMDs look like? How can we ensure that people’s wishes are respected but also that the directives are flexible enough to cope with the unexpected?
Those questions are tackled in a fascinating new paper from the Institute for Research on Public Policy, entitled Improving Advance Medical Directives: Lessons from Quebec.
The authors, Louise Bernier and Catherine Régis – law professors from Université de Sherbrooke and Université de Montréal, respectively – note that when Quebec legalized medically assisted dying in 2015, the move was part of a sweeping reform of end-of-life legislation that also included new rules on AMDs.
To prepare an advance medical directive in Quebec, you simply go online and fill out a form that allows you to say if, in case of incapacitation, you will accept or refuse five specific medical interventions: cardiopulmonary resuscitation, ventilator-assisted respiration, dialysis, artificial feeding and hydration.
The checklist is legally binding. And while the authors say that’s a good thing, it can also be problematic.
Consider this scenario: A 70-year-old suffers a stroke and is left in a permanent vegetative state. Her AMD makes it clear that she doesn’t want any intervention – not even artificial feeding and hydration. But her son, who lives abroad, asks medical staff to keep her alive for a week so he can come back and say goodbye. What happens?
The answer, as with many things in Canadian health care: it depends on where you live.
Ontario’s law does not specifically mention AMDs, but allows you to give someone a “power-of-attorney for personal care.” In Alberta, you can appoint a proxy to act as your decision-maker in the case of incapacity. Alberta also has a toolkit that helps patients and their proxies engage in a dialogue to suss out their values and wishes. And British Columbia goes one better, urging patients to have both AMDs as well as a representation agreement with a proxy. B.C. also has excellent planning guides to facilitate conversations, including cultural considerations. For example, Indigenous patients are urged to provide specific instructions for traditional ceremonies such as smudging and spiritual bathing.
But in Quebec, where the laws are much more rigid, physicians’ hands are tied. They must respect the patient’s wishes, and the hypothetical patient would likely die in a couple of days. (In hospital, this is how most chronically ill patients die, in a process known as “voluntary stopping of eating and drinking,” or VSED.)
What is clear from the research done by Ms. Bernier and Ms. Régis is that preparing advance medical directives should not merely be a form-filling task exercise. Rather, AMDs have to be living, breathing documents that are interpreted by trusted people, including medical practitioners and loved ones. Collaboration is key so that fears, priorities and values are considered.
Practically, AMDs will not always be necessary. Most people in Canada die of chronic health conditions – cancer, cardiovascular disease, diabetes, COPD and dementia account for 70 per cent of all deaths – that evolve in a fairly predictable manner. And 80 per cent of deaths happen in an institutional setting. But they will always be useful if needed.
There is tremendous pressure, both legal and social, to allow people to use AMDs for medically assisted death – for example, for patients with dementia to say that, when they reach a certain stage of illness, they want a hastened death.
The new paper reminds us that if that is ever going to happen, the process matters a lot.
You can’t plan for everything. But you can decide who you trust to make life-and-death decisions on your behalf, and you can help them with those hard choices if you convey your values and wishes clearly.
And that’s the best possible argument for productive AMD laws. When a proxy decision-maker says, “Mom wouldn’t want that,” it shouldn’t be a question that will haunt them, and it shouldn’t come from reading a checklist. It should be a firm, respectful statement based on intimate knowledge – a loving gesture from the heart.