How to Listen: Monitoring 101

This blog is part of "Monitoring Matters", a special series of guest blogs by VPS Advisors.

By Catherine Frazee, VPS Advisor

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I’m a retired professor in Disability Studies, a disability activist and a lifelong advocate for social justice and human rights. I have spent much of my professional life trying to understand how atrocities are permitted to happen in human society, to decipher the warning signals and to unravel the threads of aggression and benign neglect that precede moral calamity. I am haunted by the darkness of our eugenic past.

To some extent, all of these biographical details inform my perspective within the VPS community. But for the purposes of this Blog post, what is central to my writing is the fact of my own disability, a disability which would meet the threshold of “grievous and irremediable” but for the fact that I do not find it intolerable.

My impairments render me fully dependent upon the physical care of others. Like Archie Rolland, who requested and received MAiD in 2016, my ability to function safely and comfortably depends upon the skill and precision of the person who positions my body parts within the fractional range of breathing, mobility and communication technologies upon which I rely. Unlike Archie Rolland, those people of skill and goodwill surround me.

And so, when Archie Rolland explained as he succumbed to the inducements of MAiD, that it was not his disease that made his suffering intolerable, but rather that life had become “unbearable” because the people assigned to his care did not understand his needs and were incapable of providing the care that he needed, I heard something that his MAiD providers appeared not to hear. I heard that Archie Rolland was not asking for assistance to die, but rather for assistance to live.

I hope that you will read the newspaper account of Archie Rolland’s struggle for life. It is an account that remains highly relevant to the issue of monitoring, for the details of Mr. Rolland’s motivations and the coercive effects of his deplorable circumstances must surely be among the insights to be gleaned from a responsible approach to monitoring our national MAiD ecology.

I support the VPS recommendations to our Minister of Health because I believe that fundamentally, good monitoring is simply an institutional practice of responsible listening. In that spirit, I offer my four criteria for responsible listening in the context of MAiD.

  1. Ask the Right People
    Under the proposed Regulations, the government will only hear from medical and nurse practitioners directly involved in the assessment and provision of MAiD. This is a kind of selective listening that will seriously limit what can be learned through monitoring. While those practitioners must be required to report on their MAiD-related judgments and activity, it is equally important for the government to hear directly from patients like Archie Rolland who are willing to share their perspective, and from other health care providers who have insights about the context for every MAiD request.
  2. Ask the Right Questions
    They are called probing questions. They are questions which would scratch the surface of Archie Rolland’s case, so that the lesson it yields goes beyond a simplistic account of a man with ALS who met the criteria and chose MAiD. Under the proposed Regulations, we won’t learn anything about the life circumstances of patients who request MAiD, or about the kinds of alternatives, such as home care or palliative care, or just better care that might have made a difference in their lives. The VPS submission calls for collecting more information about patients’ reasons for requesting MAiD, and about personal and social circumstances such as poverty, discrimination, loneliness or intolerable living conditions that may have compounded their suffering. We need to be sure that when a patient requests MAiD, every effort is made to offer alternatives that might make their lives more bearable. Monitoring should help to assure us that MAiD is serving the people it is intended to serve, without sweeping the atrocities of social neglect under the carpet of bureaucracy.
  3. Take the Time It Takes
    Listening is about stepping back and taking a breath. There is no “quick and easy” way to monitor a practice as serious and complex as MAiD. When the government introduced its proposed Regulations, it took pains to point out that the “administrative burden” upon health practitioners required to report MAiD-related activity would be minimal, resulting in an “annualized average increase in total administration costs” of just $5.00. The VPS recommendations, admittedly, would increase the “administrative burden” for practitioners required to report more information, and for regulators charged with collecting and compiling more information. But please, the time and cost associated with good monitoring cannot be a reason to compromise the goals of the law or to undermine the safety and well-being of Canadians in vulnerable circumstances.
  4. Be Prepared to Step Up
    Listening requires being prepared to hear what is said. For both our federal and provincial governments, effective monitoring of MAiD will no doubt reveal gaps in our social safety net that point to failed policies or political neglect. Canadians need to know if people are being forced to choose MAiD because suitable care is not available in their region, or because their home care arrangements place too heavy a burden on family and friends, or because they have been made to feel that their lives are without value. And we need to know, over time, if and how MAiD is changing our human rights norms – how we think about and respond to illness, frailty and disability, and whether we are inching our way toward the tipping point of moral calamity. A robust monitoring system must not shy away from questions that may have answers no one wants to hear.