Reporting on and Monitoring of Medical Assistance in Dying (MAiD)

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

By Eric Wasylenko, VPS Advisor

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I am writing this blog article from my perspective as a palliative care physician and applied Clinical Ethicist, and as an advisor to the Vulnerable Persons Standard. I have been very active in the design and implementation of the program for medical assistance in dying in one Canadian province, and have participated in teaching about implications of this new practice and in informal review initiatives for medical assistance in dying provincially and nationally. I am expressing my own views in this article, not representing any of the organizations that I consult to. I am on the public record as a physician who will not provide medical assistance in dying, and I very deliberately teach attitudes and skills that promote non-judgement of patients and colleagues regardless of the route they choose, and non-abandonment of the patients we serve.

Regardless of how one’s personal commitments play out in the moral divide on participation in medical assistance in dying, an important set of principles that guides all of our work includes fairness and equity for members of our society. For this reason, I remain concerned about the lack of provincial/territorial and national standards for the collection of data, reporting of actions and of experiences, and the robust monitoring of practices related to medical assistance in dying, some two years since the Supreme Court ruling in Carter v Canada was delivered, and 22 months since the new law in Canada was enacted. We learned a great deal from the regular and systematic reporting from other countries who have legalized medical assistance in dying, and those reports informed the way policies and regulations were implemented in Canada. We have a duty to contribute to that body of information as we inform other jurisdictions and as we continually review our own programs.

While fairness and equity rightly applies to everyone, it seems to me that we owe a particular duty to assure as much fairness and equity as possible for those who are vulnerable. A person who is vulnerable in any way will potentially be prone to greater burdens through either the non-equitable application of programs and resources, or via decisions regarding assessment for eligibility that are made in inconsistent ways amongst jurisdictions and providers.

Government tried to assure Canadians that medical assistance in dying should be available and accessible in a just way, for people that meet the criteria established in the law. Importantly, government also tried to reassure Canadians that strong measures would be implemented to protect people from becoming dead through medical assistance when their decision might be made out of undue vulnerability, or in a moment of weakness. Government also promised that conscience rights for providers would continue to be protected, and should be harmonized with rights to seek an assisted death. In order to assure these three important conditions are being met Canada needs to implement a) the requirement for strong and mandatory collection of useful information, b) public reporting of that information and c) monitoring of practices through the collection, reporting and analysis of consistent information.

The personal, moral and emotional underpinnings of this life-ending decision cannot be understated – for the patient and family and for the person’s care-providers. Some providers will be ardently opposed to this practice in all circumstances, and some will be fervently in favor, even taking an advocacy position in order to change law and practice. Others will find themselves between those two poles. It is not a stretch to imagine that at the extremes, decisional judgement could easily favor one’s firm position.  That is not a criticism of evaluators. Rather it is a recognition of human bias and the limits of objectivity. In part because we recognize those decisional biases, society expects to be able to evaluate how an important, new and morally-laden practice is actually being carried out. We do not leave such clinical events completely unmonitored. And rightly so.

How can we know if practices are in keeping with the foundations of the law – fair availability, protection of vulnerable persons and harmonization of conscience rights?

A straightforward statistical description of the practices being undertaken, while necessary, is not sufficient in my view to deeply inform clinical practice, law-makers, policy-makers, regulators, prospective patients, and society at large. Rather, the essential elements should include at least the following:

  1. The reasons for requests, including the conditions of suffering that have motivated a person to seek this mechanism of death.
  2.  Reporting based on a valid and standardized assessment for conditions of vulnerability that the person may be experiencing.
  3. The efforts undertaken to inform about and access services that may be able to relieve suffering and conditions of vulnerability.
  4. Detailed statistical information in order to better research and analyze the patterns of practice and characteristics of decision-making surrounding this practice (the following is not an exhaustive list): medical condition and co-conditions motivating the request, connection of assessor to the patient, number of assessments for eligibility, interval between request and assessment, and interval between assessment and decision to proceed or not, the length of deliberate delay in proceeding if declared eligible, reasons for declaring a person ineligible, supports that are accessed for someone who has been declared ineligible, whether a referral was required, location of death, route of administration, length of time from administration of substance to death, complications noted.
  5. Very importantly, in order to better understand the deep nuances involved I am of the view that we need to find a way to gather a narrative description of what was experienced by:  patients seeking early  information about this option; patients directly seeking the option; their family members; patients who elected to defer action after being declared eligible; patients who were not declared eligible; patients who felt pressured to make a particular decision; clinicians receiving the initial request; clinicians acting as assessors; clinicians acting as providers of assisted death; and clinicians caring for the patient’s other ongoing needs.  Not all participants will be willing or able to engage in a narrative description, but I suspect many would wish to contribute their thoughts and feelings in order to better inform others by sharing their experiences.

The collection, analysis and reporting of any of this information of course has to comply with privacy laws and our duty of confidentiality.

The extra effort required to collect and relay much of this information will be seen as a barrier. Centrally managed services within a jurisdiction are best placed to assure the collection and reporting of such information in a standardized manner as those management mechanisms assist all parties in the navigation of decisions about, assessments for and possible provision of assisted death. Narrative information should add to the statistical data, and this will require an effort within each province/territory, nationally harmonized, to collect and report on standardized information. That work cannot be left entirely to clinicians. Further, a commitment to rigorous qualitative research based on the experiences of participants should become an expectation.

Eric Wasylenko is a palliative care physician and clinical ethicist from Alberta. He currently works primarily with the Health Quality Council of Alberta, and outside of that role he advises a number of health organizations and government departments provincially and nationally. He holds academic appointments at the University of Calgary and University of Alberta.