Honourable senators, I rise today to speak to Bill S-248, an initiative brought forward by a passionate and diligent advocate for patient autonomy and dignity, Senator Wallin. I know this legislation, like her amendment to the previous government bill, is based on a very personal and painful experience and is presented with sincere intentions.

In the previous speeches I have made on assisted suicide, I have stressed my concern with the speed and the magnitude of the expansions the government has made to what was initially a careful, cautious response to a decision made by the Supreme Court of Canada.

While we were keenly aware at the time of the paradigm-shifting nature of legalizing assisted suicide, most of us were also aware of the need for clarity, certainty and stringency in the law so that we could ensure no life would end prematurely without careful evaluation and the express consent of the individual.

For many of us, the safeguards at the time fell short, yet, as I have said before, I could never have imagined that a few short years after our “slippery slope” arguments were dismissed, we would be legalizing assisted suicide for people suffering from mental illness and tabling committee reports recommending the expansion of assisted suicide to children. These are proposals I find indefensible.

However, I would not put Bill S-248 in that category. I am sympathetic to the rationale for advance requests, particularly for patients diagnosed with Alzheimer’s and dementia, who fear living in an unfathomable state as their illness progresses.

That said, in practice, this legislation would eliminate one of the most fundamental safeguards in Canada’s assisted suicide regime: the need for unequivocal, unquestionable and clear final consent before ending the life of a person.

Advance requests eliminate the ability of a physician to ascertain the person’s present desire, leaving a very real possibility that a person’s life could be ended against his or her wishes.

The Supreme Court of Canada in Carter emphasized numerous times that a person requesting assisted suicide must provide clear consent. If the consent must be clear and unequivocal, it must also be contemporaneous. According to the experts, there are data highlighting the risk of providing assisted death to a patient against his or her wishes.

In discussing advance requests, or ARs, the report of the Council of Canadian Academies on advance requests for MAID prepared for the Government of Canada stated that:

The primary risk involved in ARs for MAID is the risk that a person will receive an assisted death against their wishes.

This risk is supported by Health Canada data. Health Canada’s first, second and third annual reports on assistance in dying in Canada demonstrate that, on average, approximately 20% of people who withdrew their requests for assisted suicide did so immediately before the provision of the assisted suicide.

That is a striking statistic, and one that should give us all pause.

I was not a member of the Special Joint Committee on Medical Assistance in Dying, but I did read the testimony and the final report with great interest. While some witnesses certainly agreed with what Senator Wallin is proposing, others raised serious legal, ethical and practical charges with advance requests.

There were three overarching concerns raised by witnesses. The first was the inability of an individual to predict with accuracy what their quality of their life would be in the future, particularly if they are living with a chronic medical condition. The second concern was the inability of a person to withdraw consent, and the third was that the advance requests present the possibility of abuse, coercion and undue influence of vulnerable patients.

On the first point, several witnesses provided examples of the limitations of our ability to assess our future quality of life. Dr. Romayne Gallagher, Clinical Professor of Palliative Medicine at the University of British Columbia testified on behalf of the Canadian Society of Palliative Care Physicians, stating that:

 . . . . medical and social science literature reminds us that people are poor at anticipating what life would be like with a life-changing illness or disability. People adapt to illness and disability and adjust their needs for a decent quality of life. Many medical conditions have long and unpredictable courses. . . .

Dr. Jonas-Sébastien Beaudry similarly noted that patients making advance requests may have experiences and desires that are different from those that they had in the past. They have never experienced what it is to live a life with fewer cognitive capacities.

He gave the illustration of a 75-year-old man named John who has lost the capacity to make his own health care decisions. It is widely accepted that when health care decisions are made on someone else’s behalf, they should only be made for the benefit of that patient. Dr. Beaudry noted that one would assume that John, without dementia, when he was, say, 50 years old, would know his future self better than anyone and that he would instinctively know what is best for John at the age of 75.

However, that is not so obvious. For one thing, John may be making decisions to, first and foremost, ease the burden on members of his family. He might also imagine his future self bedridden and highly dependent and feel shame at the thought of being seen this way. These assumptions may be based on widely held discriminatory beliefs about the quality of life of people with illnesses and disabilities and about whether their lives are worth living at all.

Dr. Beaudry noted that many people live happy lives with various significant medical conditions or a high level of dependency. However, if John or anyone in his family or health care team does not agree or is unaware of that because of ableist generalizations, John at 75 years old would become the victim of these ableist or ageist stereotypes.

Dr. Beaudry’s overarching point was that when it comes to health care, we should care for the patient before us even when that patient has advanced dementia. It does not mean that John’s past experiences are irrelevant. The holistic assessment of what is in his best interests may include his past wishes and preferences.

The bottom line is we do not give the last word to the former self of a patient, particularly a cognitively and experientially distant self.

The committee also heard from Dr. Alice Maria Chung, a geriatrician who has worked with elderly patients for 30-plus years and teaches capacity assessments to medical students, residents and practising physicians so that they will be able to identify whether a patient is capable of making a medical decision.

Dr. Chung posed this question:

What right does the 60- or 70-year-old you have to judge the quality of life of the 80- or 90-year-old you? Patients with chronic illnesses can often adapt to their altered circumstances and develop a new equilibrium and sense of self, and feel that their quality of life is actually quite good.

There is a body of medical literature demonstrating this point. She noted that she had seen it in her practice as well.

In response to this concern, Senator Wallin said that we do this all the time within the law. We write wills and we leave them with lawyers, we have “do not resuscitate” orders, et cetera. That is all true. However, we all know that actively ending a person’s life without certainty of their present consent is entirely different. In this case, I would argue, if there is any risk of getting it wrong, we cannot ethically proceed.

The second issue is that an individual would be unable to withdraw consent, which is an essential component to informed consent. Consent is a concept that has permeated public discourse over the past several years, and we have come to a societal understanding that, on the most serious of matters, consent must be current, explicit and unambiguous. I cannot imagine a more serious circumstance in which consent must be ascertained.

Are we really suggesting that a lack of refusal constitutes consent? We know that it does not and it cannot.

We can all agree that a person’s autonomy must be respected, and if an individual is capable of decision making and able to clearly communicate that decision, it is reasonable to hold a view that those wishes should be honoured. However, we have decided as a society that there are necessary limits to freedom of autonomy.

Dr. Félix Pageau, geriatrician and researcher, told the committee:

The government must protect vulnerable people and protect people from themselves. Which is why it has established a legal age for alcohol consumption and requires people to wear seat belts in cars and helmets on motorcycles. Freedom of autonomy is therefore not absolute in Canada; it is regulated.

Similarly, our current law places necessary limits on the ability of a person to make future decisions without the ability to change their minds on the most serious medical decision one can make. It is well-documented that when it comes to assisted death, requests and minds are being changed immediately prior to administration. Requests are being withdrawn. This option to withdraw consent at the last minute must remain.

Finally, there is the risk that allowing advance directives for people with dementia and Alzheimer’s could lead to abuse. People already face undue influence to avoid being a burden to their loved ones. As Dr. Chung stated:

I have had multiple patients who have been heartbroken at having been coerced into selling their home and moving into a facility because of family pressures to not be a burden. I cannot currently protect vulnerable elderly from financial abuse with the current safeguards. I do not believe safeguards could be crafted to adequately protect them from undue influence to accept or request MAID.

Trudo Lemmens is an expert in health and law policy. In the submission to a joint committee on this topic, he provided international context to the discussion, highlighting the requirements of other countries that have implemented advance requests for assisted suicide. He noted that:

Belgium only allows MAID based on AR when persons are permanently unconscious, to avoid euthanizing people who still enjoy life and may resist. The Netherlands originally had difficulty with MAID based on AR, since it was considered impossible to defend this practice on the basis that persons ’suffer unbearably’, when they were no longer able to confirm this. It now has permitted it for persons even when they appear to resist.

Neither regime involves explicit contemporary consent, which is arguably constitutionally required in Canada given the Supreme Court’s emphasis on clear consent in Carter.

Lemmens notes that our current medical assistance in dying, or MAID, regime already goes well beyond the Belgium law, while our social and health care support is below the Organisation for Economic Co-operation and Development, or OECD, average. Finally, he pointed out that perhaps, not surprisingly, the Dutch experience with advance requests has led to insurmountable ethical and legal challenges.

Colleagues, while I have tremendous compassion for people who have received a troubling neurocognitive diagnosis in which the future is unknowable and the fear of a poor quality of life sets in, as the experts have stated, there is no way to predict with certainty how one will feel as the illness progresses.

Giving the final sign-off or the last word to the past version of a person is wrong. We cannot give prior wishes of people who cannot fully appreciate their future lived experience priority over current interests. The stakes, colleagues, are too high.

Given that Health Canada’s own data states that 20% of those who withdraw their requests for MAID do so immediately before the procedure, if this bill passes, there will undoubtedly be people who fall through the cracks, patients whose lives are ended against their present wishes — the involuntary ending of a life.

The cost of getting it wrong far outweighs the cost of not acting. For that reason, I cannot support this bill. Thank you, colleagues.