Thank you very much, Madam Chair and Mr. Chair. I'm happy to be here.
I've been a physician in the division of geriatric medicine at the McGill University Health Centre since 1984. My practice is focused on patients with dementia. I'm an expert in decision-making capacity assessment. I see victims of elder abuse. I teach on these topics and testify frequently in court for my patients.
I have cared for and accompanied thousands of people with dementia and their families. My perspective is very different from those who view my patients from an academic or political point of view. I have learned how well people adapt to the changes in their lives wrought by cognitive decline. There are many challenges, not least of which are the ageism, ableism and neglect they face in the health care system.
Despite this, most people do well when measures are put into place to support them and their families. In 38 years, none of my patients or their relatives have ever requested MAID because of a dementia diagnosis.
I've noticed in this debate the assumption that advance written directives are a proven tool that enables autonomy and provides adequate free and informed consent to medical interventions. This is false. For consent to be valid, it must be voluntary. The patient must have the capacity to consent and must be informed. Consent is informed when the patient has received and understands the detailed information in the diagnosis, including any uncertainty, the proposed investigations or treatments, their chances of success, available alternatives and their risks, and the potential consequences of leaving the condition untreated.
Advance consent can never be fully informed.
The 2018 CCA expert panel on MAID by advance requests cited knowledge gaps and a lack of evidence regarding its safety. They reviewed the literature on advance care planning, or ACP, a field that was developed to improve medical decision-making towards the end of life. ACP is not limited to advance directives. In fact, its scope is becoming broader over time, as the limitations of such directives, also called living wills, become evident. Articles published by experts include “Why I don't have a living will”, in 1991; and “Enough: The Failure of the Living Will”, in 2004.
Definitions of ACP refer to a reflection and communication process to ensure goal-concordant care near the end of life for people lacking decisional capacity. Components include discussion of broad life and health care goals and naming a substitute decision-maker.
Of the research reviewed by the CCA panel, very little studied written directives alone. The report mentions no evidence that written directives effected any meaningful outcomes. In one Canadian study, the documented preferences did not match the expressed wishes of the patient 70% of the time.
A 2020 review of 69 studies found no effect of advance care planning on goal-concordant care or quality of life. These results make sense, given the evidence that people predict poorly their quality of life in hypothetical situations. This has been attributed to known cognitive biases, such as projection bias, projection of current preferences onto future situations; focalism, focusing on what gets worse, not what remains positive; and immune neglect, underestimating one's adaptive capacity.
We often see a change in preferences for care as a person adapts to advancing illness. This is true even in dementia, and it is is why we respect the current wishes of incapable patients as long as they are not harmful to the patient.
More and more end-of-life experts express serious doubts about the utility of written advance directives. Recent articles include “Advance Directive/Care Planning: Clear, Simple, and Wrong”, in 2020; “What's Wrong with Advance Care Planning?”, in 2021; and “Should we still believe in advance care planning?”, in 2022.
Morrison et al, the authors of one of those articles, state:
Treatment choices near the end of life are not simple, consistent, logical, linear or predictable but are complex, uncertain, emotionally laden, and fluid. Patients' preferences are rarely static and are influenced by age, physical and cognitive function, culture, family preferences, clinician advice, financial resources, and perceived caregiver burden.”
For these reasons, there's been a shift in practice from promoting written documents to a dynamic process of dialogue. This is the standard of care for end-of-life decision-making.
It is absurd and alarming that written directives, having failed for ordinary treatment decisions, are now being contemplated for MAID.
To cause the death of a person with dementia who is not asking for it on the basis of advance consent that is necessarily uninformed is contrary to autonomy and beneficence and has nothing in common with treatment withdrawal decisions. There is a broad consensus in ethics and medicine that to directly cause death is distinct from allowing death to occur through the natural progression of an illness.
Advance directives for MAID would lead to elder abuse through manipulation and forgery of directives. I've seen it with powers of attorney, where the consequences are not nearly as grave.
If MAID by advance request became legal and binding, Canada would be the only place in the world where a state agency is obliged by law to kill an innocent and defenceless person.