Honourable senators, I rise today to speak on Bill C-7. I will be bringing forward an amendment.

I know that every senator in this chamber has deeply held views on this legislation. I respect those divergent opinions. But what we share in common, I believe, is a desire to ensure that we do the best for patients and families who are at the most difficult time in their lives — the end of one’s life or the death of a loved one.

Without the five-year review that was promised after the enactment of Bill C-14 and with only a limited number of witnesses and testimonies, albeit far more than during the House of Commons study of Bill C-7, most of us have not witnessed the full MAID regime from start to the last stage. None of us have received MAID — obviously — to truly understand medical assistance in dying itself, or fully comprehend the immense complexities, strains and pressures around the end-of-life experience involving MAID.

In that context, I’m very concerned that, while we are now seeking to expand the applicability of medical assistance in dying, we are removing safeguards and are failing to provide sufficient protections to ensure that the will of the patient is always respected throughout the entire process, even at the last possible moment. After all, unlike being able to change one’s medication due to an adverse reaction or overcoming an error in a medical procedure, receiving MAID is fatal.

If we examine the principles inherent both in this bill and in Bill C-14, passed during the previous Parliament, we note that these principles stress the fact that medical assistance in dying is always to be initiated by the patients themselves. Bill C-14 noted the robust safeguards, reflecting

. . . the irrevocable nature of ending a life, are essential to prevent error and abuse in the provision of medical assistance in dying.

The preamble to the bill we have before us, Bill C-7, also reiterates this principle by stating that, among the interests and societal values that must be balanced is “the protection of vulnerable persons from being induced to end their lives . . . .”

Colleagues, it is my view that these principles are even more important now, given the scope of the legislation we have before us, because of the amendments that have been adopted thus far.

Honourable senators, some of you have spoken about personal experiences with end-of-life circumstances involving loved ones, and I have been moved to tears. I have several of my own as well. The atmosphere is highly emotional. Patients may not be fully present or be aware of their surroundings. They may be partially present but their statements may be imprecise, their gestures not perfectly understood. Persons in the room, whether family or medical practitioners, may have differing interpretations as to a patient’s desires and reactions.

While in a palliative setting for my father, I clearly recall the moments before, and that moment of my father’s final breath, and the intensity of those minutes. This is why I believe we must ensure that the legislation which governs medical assistance in dying must give every benefit of doubt to respecting the clear will of the patient during the process itself, to the very last possible moment.

Again, I remind colleagues that what we are talking about is irreversible. Given that stark reality, it is vital that we at least try to ensure that the will of the patient remains paramount. I believe that the legislation must err on the side of caution in interpreting the will of the patient during the MAID process. It is in this context that the “greater certainty” clause currently found in the bill causes me to pause every time I read it.

Clause (3.3) states:

For greater certainty, involuntary words, sounds or gestures made in response to contact do not constitute a demonstration of refusal or resistance for the purposes of paragraph (3.2)(c).

What concerns me about this clause is the highly subjective nature of what is being articulated. Even persons who have known an individual for their whole lives will have different interpretations of what may be a substantive statement by an individual versus involuntary words. The last thing we want to do is to contribute to confusion, and dispute as to whether an irreversible decision was properly and legally taken.

What further concerns me about this clause is that it makes a presumption. It states that

. . . sounds or gestures made in response to contact do not constitute a demonstration of refusal or resistance for the purposes of paragraph (3.2)(c).

Surely every circumstance will be different, just as every patient is different. It is completely wrong to write only one interpretation into legislation.

When Professor Trudo Lemmens testified before the Standing Senate Committee on Legal and Constitutional Affairs, he referenced this issue of advance consent versus the patient’s reaction when MAID is actually being administered. He made reference to a very disturbing case in the Netherlands where a person with dementia had given an advance directive for MAID, but on the day it was administered, the patient resisted. Despite that, the person was given MAID. The movements of that patient were believed by some to have been involuntary, but others had a very different interpretation. It resulted in legal proceedings against the doctor in question.

An article in the Journal of Medical Ethics describes this dispute over the will of the patient as the “then-self versus the now-self” dilemma. How does one interpret gestures and movements as a patient is being impacted by their illness, by medical procedures and by the very lethal circumstances of the MAID process?

Included among these medical circumstances is the impact that medications may have on different patients. In this regard, there is so much that we do not know, but what we do know is that patients’ experiences with drugs will not be uniform.

My father, for instance, was one such outlier of every single medication or procedure he was given while hospitalized over an 18-month period. He was the daily subject of the team of medical professionals who were part of his complex care at several institutions. He experienced severe reactions and was captured in the 1% to 5% of patients who are at risk of experiencing a dangerous side effect of a procedure without fail.

I am my father’s daughter. I, too, am such an outlier. A normal dose of a drug that relaxes most people is sure to elicit an adverse reaction in me.

In British Columbia, the Medical Assistance in Dying Protocols and Procedures Handbook of Comox Valley references several possible scenarios. It acknowledges that sedatives can “cause restlessness.” It states that on very rare occasions the drugs may not place the patient in a medically induced coma. The protocol incorporates a backup plan in case of failure of MAID.

What is clear to me from the testimony I heard at committee is that medical professionals do not always agree on many of the issues concerning the administration of drugs and the impact those same drugs will have on different patients. In fact, interpretations and analyses can be starkly different.

On the one hand, we heard medical witnesses tell our committee that the drugs used in MAID essentially induce a peaceful death. Some witnesses even described the MAID process as “elegant,” while other witnesses presented a very different picture.

Dr. Joel Zivot, a professor at Emory University and practising anaesthesiologist and intensive care medicine specialist, explained that what one sees on the surface can be deceiving:

Let me also be clear, though, that the way a person would die with medical assistance in dying is going to be with a combination of the propofol but mostly the paralytic. The propofol is given in a very large quantity, 10 times what I would give in the operating room.

To state that the death that the person experiences is peaceful, this is unknowable or false. To say that it outwardly appears to be peaceful, I suppose that would be true. But that is a chemical myth put in place. . . .

Professor Zivot has provided anaesthetics and sedation to over 50,000 people, so his testimony should not be discounted.

As previously stated, we haven’t conducted a thorough review of the MAID regime, nor of the protocols in place. I know that different provinces have different protocols and experiences, and perhaps even cooperation going forward, but a thorough review has yet to be done across the country. Currently there are no national or consistent provincial standards. There is a lack of clear understanding and there are discrepancies about the pharmacology involved in the MAID protocol. In addition to all of these complexities, expansion of the regime is taking place during a pandemic that is stressing an already stressed medical system.

Originally, when Bill C-14 was enacted, we were told that Parliament would conduct a thorough review of the impact of the legislation five years after enactment. Now we are told that we must approve and enact a major expansion of MAID even before that review is conducted. The government has said that we must do this to respond to a lower court’s decision in Truchon. Instead of conducting a careful assessment, based on evidence, about how MAID has been implemented to date, the timeline of a lower court is driving this headlong expansion of MAID. If this is the way the government is determined to proceed, then at a minimum we should seek to ensure that we err on the side of caution in protecting patients.

Given all that we do not know, and in the absence of the five‑year review we were promised, the process of administering MAID must minimize the possibility of error when it comes to respecting the will of the patient at the time of death by assisted suicide. To do otherwise will create extreme moral distress for both family members and health care providers.

We have heard conflicting evidence, which is both confusing and concerning. The United Nations Convention on the Rights of Persons with Disabilities states that all persons are equal before and under the law and are entitled, without any discrimination, to the equal protection and equal benefit of the law. Where an individual has lost capacity, those fundamental rights remain unaffected and must be protected. In my view, this means we must ensure that we do not deliberately and unambiguously discount gestures or signals that may indicate that a person has changed his or her mind.

Colleagues, there are still many unknowns regarding the MAID process, and we are all learning what a person at this stage of MAID truly wants or is truly experiencing. Until we are convinced beyond a reasonable doubt, we should not have such a sweeping clause.