There are times of crisis where we need to move on best guesses, incomplete and shifting data. The current pandemic is one such. The pubic hazard of inaction is large. But MAiD is exactly the opposite. It is a major shift in public values for which the hazard of delay is vastly outweighed by the benefits of acting from knowledge, write Harvey Schipper and Robyn Boucher.
By Harvey Schipper and Robyn Boucher, December 4, 2020
New legislation that will have a tremendous impact on the lives and deaths of Canadians, Bill C-7, is in committee this week. The bill is a response to a Quebec court decision that rendered unconstitutional the clause in the existing assisted suicide legislation requiring that one’s death be “reasonably foreseeable” for a patient to qualify for “Medical Assistance in Dying”, or MAiD. The Court also sought to impose a short time frame for the federal government to introduce compliant legislation.
The apparent response is to accede to that ruling on purely legal grounds. Except, this is at root not a legal question. It is a science question, for which we need evidence that is based on clinical reality.
In other words, what have we learned about the 13,000 plus Canadians who have elected to receive MAiD over the past half decade. Who are they? What were their circumstances? What led them to make this irrevocable decision? How often did we get the bedside decision right? Where did we make a mistake?
The First Annual Report on Medical Assistance in Dying in Canada, 2019 was released in July. It reports 13,946 deaths by MAiD, about 2% of deaths in Canada. The data were largely administrative. What were the demographics: age, sex, underlying diagnosis, place of residence etc.? Were the rules followed? Did the patient meet the eligibility criteria? Did things happen in the proper sequence? There are some important observations that demand further understanding before we change the law in any direction. For example, 82% of those who received MAiD cited ‘loss of ability to engage in meaningful life activities’, or 56.4% ‘Inadequate control of symptoms other than pain (or concern about it)’. Having identified the issue, there is no record of attempts to address the problem, in other words to alleviate the suffering. Moreover, the voices are those of the providers, not the sufferers, a significant bias that is well recognized.
Training and oversight of MAiD assessors and providers, and the data required for overview shows it to be inconsistent and imprecise. Only three provinces have even rudimentary training programs.
What this tells us is that we are beginning to describe the problem, but we don’t understand it. The public and the MAiD providers are operating in a knowledge vacuum that can only undermine our confidence that this most progressive end of life regime in the world is operating safely and in accord with Canadian values. Not the time to change the law, in any direction.
A fundamental principle of disciplined learning is to ask the right questions. Scientists often say that framing the question is more than 50 percent of learning a useful answer. From that perspective, process questions are of little help. With MAiD the questions that have meaning and impact are those that probe deeply into the circumstances and motivation behind the request. As the late great clinician Oliver Sacks would put it, you have to get into the head and heart of the patient.
So here are the questions we should be asking patients and doctors in each case:
The patient’s perspective:
1. Who are you? Tell me about your life and how you have come to consider actively ending your life.
2. Let me understand in depth the nature of your suffering. What is its cause: physical, psychological, social, existential or spiritual? Perhaps there is more than one cause, but for each one, let me understand its pattern, what makes it worse or better. For each one, let me understand its history. For each one, help me to understand, from your perspective, the possible things that could have been done, or tried which did not help enough. Were options not available? Were you unwilling or unable to try other options?
3. Suffering is a perception. Different people respond differently to circumstances which can cause suffering. That is not a value judgment, simply a statement of fact, scientific fact. Help me to understand why you perceive your suffering is intolerable to the point of wanting to end your life.
4. How do you live, and to whom are you connected? Do you have relationships in which you can share your feelings, fears, concerns and desires – including the wish to have your life ended? If you have such relationships, what have been their responses? If not, why not, and are you open to forming such bonds?
5. How much of your desire to end your life draws from concerns about your dignity, autonomy, and ability to control your life?
6. Where, if at all, does faith, formal or otherwise, fit in your life?
The physician’s perspective:
1. Have we ascertained that the patient has the capacity to make such a decision, and by what means?
2. Has the assessment included input from health professionals who know the patient’s history in detail?
3. What is the patient’s life trajectory?
4. Has the assessment included input from those in the patient’s intimate circle; family, close friends and colleagues? If the patient does not wish such input, do we know why?
5. How did the patient meet the criteria?
6. Given the concerns raised about patients’ underlying vulnerabilities, such as dependence on expensive technologies, or need for specialized longer-term care, have those concerns been directly addressed?
7. Have you ascertained that there are no inappropriate external coercive forces at play?
8. Was this a difficult or straightforward decision to make, and why so? Be specific.
This is the information essential to making a profound and irreversible clinical decision. Yet, there is no accredited national training program, and we cannot be assured that this quality of assessment is being provided. Nor is there effective oversight for those who assess eligibility or provide MAiD. We are thus left with the disconcerting reality that we have no idea that the intent of MAiD as set forth by the Supreme Court and subsequent legislation is being met with the necessary skill and safety.
Equally worrisome, we are in no position to learn from our experience. What can we do to relieve the suffering, before we end life as a last resort? Where have we fallen short? We don’t tolerate this with any other medical procedure. Why so with one that actively, uniquely, ends life? Some have suggested that the way out of the legal conundrum is to insert a ‘sunset clause’ in the new legislation. Such a clause would expand access to MAiD if government did not come up with enabling legislation before that date. This is where the legal analysis falls short. We are where we are because we don’t understand what we are doing at the bedside, human and biological level. That takes time and disciplined study. To suggest that if a busy Parliament, preoccupied with a pandemic among other things, can’t solve this intractable problem in six months, the legislation should be changed without public review, is breathtaking over-reach.
There are times of crisis where we need to move on best guesses, incomplete and shifting data. The current pandemic is one such. The pubic hazard of inaction is large. But MAiD is exactly the opposite. It is a major shift in public values for which the hazard of delay is vastly outweighed by the benefits of acting from knowledge.
Harvey Schipper is Professor of Medicine and adjunct professor of law at the University of Toronto. He was a member of the Council of Canadian Academies Expert Panel on Medical Assistance in Dying. And he is the author of the Macdonald-Laurier Institute publication, “The Bed We’ve MAiD: Moving too quickly and without evidence down a path of Medical Assistance in Dying,”
Robyn Boucher is a third-year international studies student at Bishop’s University and a research intern with the Macdonald-Laurier Institute.
