Thoughts Bill S-248 (October 17, 2022)

Thank you very much, Your Honour, for this opportunity to conclude my thoughts on Bill S-248.

Throughout our lives, we deal with death in many forms — the death of a relationship or a career, the death of a loved one, even a beloved pet and, of course, we will face our own death as well. Death and dying are a part of life. We are — for better or worse — the only species actually aware of the inevitability of death. That motivates us, helps us find purpose and may also frighten us; either way, it makes moments meaningful and precious.

We live in a time where we can reasonably foresee death. We can diagnose terminal illness or spot signs of physical and cognitive decline scientifically and with great accuracy. While more people may be living longer, what becomes more important is: Are we actually living a good life? In the pursuit of longevity, we must always consider quality of life.

I have come to my views watching both of my parents die in two very different but equally tragic ways — my father to painful cancers, my mother to Alzheimer’s. Their suffering was unnecessary and preventable. These encounters with death can help ready us for an end to our own life. We all want to be spared pain and indignity, but we need choices.

I believe it is our right, and perhaps even our responsibility, to make our own end-of-life decisions. Every single day, Canadians with an incurable or irreversible medical condition suffer needlessly in hospital beds and care homes. They suffer, sometimes with loved ones close at hand, but too often alone or in fear or — the worst of all fates — without knowing who they are or once were.

For many Canadians, the right to choose medical assistance in dying has been a blessing. I have seen it first-hand. The ability to choose is empowering. MAID affords a person not just relief from pain and suffering, but a sense of control and predictability, a chance to plan and a chance to say goodbye.

For those recently diagnosed with an incurable illness, death is a ruthless dictator. Research shows that over 20% have prolonged and intense feelings of fear of dying a painful death. We are able, so why would we not offer some certainty at the end when so much of life has become uncertain? That’s what this bill is about: peace of mind and a dignified departure.

Bill S-248 gives Canadians, once they have been diagnosed with a “grievous and irremediable medical condition,” the ability to make an advance request for MAID, before they lose the capacity to give final consent. It’s a common sense answer to a gap in the current law, and it’s something an overwhelming majority of Canadians want. It will allow those diagnosed with dementia or Alzheimer’s the freedom from this possible Catch-22: You can’t ask in advance of a diagnosis, and once diagnosed it’s too late to ask for some time in the future.

This bill will allow a person to apply long before they actually wish to die and long before they have lost capacity to ask for MAID. This offers peace of mind and a better quality of life for the time they have left with much less stress and anxiety as they live out their final days.

In 2019, a survey by The Canadian Press found that over 86% of Canadians agree that people with a serious, degenerative and incurable disease should be able to request and obtain medical assistance in dying, and 74% said MAID should be accessible to all people with incurable diseases, even if their death is not imminent. Just last year an Ipsos poll conducted by Dying with Dignity found that Canadians feel the same way about advance requests: 83% of Canadians support them for those with a grievous and irremediable condition.

This is a powerful insight into the minds of Canadians, their values, their empathy and concern for their fellow citizens, not just their loved ones. It is all clear. Even with so much public support, we still, sadly, have that unfair gap in our current MAID laws, and it is our responsibility as lawmakers to right this inequity.

I won’t review the entire history of MAID, but, as you will remember, in 2016 the government introduced Bill C-14, in response to the Supreme Court Carter decision, which afforded individuals the right to make their own end-of-life decisions. In the bill, a series of safeguards were put in place to guard against fears of a slippery slope of access. But the government decided that access for mature minors or those with mental disorders as an underlying sole condition and the right to an advance request were all to be excluded from the final draft of the bill. The government said it wanted more time to figure out how the public and the medical world would deal with the ethical complexity.

Of course, all agreed that an assisted death ought not replace essential support and services for the under-represented, the unwilling or those who could have been treated or cared for but were failed by an unjust or overburdened system. This applies to anyone, for that matter. MAID is always a matter of choice. MAID is not an alternative to poverty or treatment or support or family. It should and must always be a choice. And I believe, as it stands, our MAID regime is moving toward the right balance between access and safeguards. We know a little more with MAID having now been available for more than six years.

The third annual report on MAID, which was released in July, indicated that in 2021, 80% of all MAID recipients first had access to and received palliative care, a number that has remained constant since 2019.

Of the MAID recipients who did not receive palliative care, 88% had access to those services but chose not to avail themselves of that option.

So the typical MAID recipient, then, is a cancer patient in their seventies who died in their home after receiving palliative care in advance of MAID. We must continue to work to ensure equal access as well, so those in rural or underserviced areas are not denied access.

There have been some suggestions — undocumented — of people being offered MAID as a first resort rather than a last. Any evidence of any such cases should be investigated, of course, but it does not mean the entire system should be replaced.

There are safeguards in MAID law to make sure that those requesting MAID must state, literally in the moment before their medically assisted death, that they are certain. It ensures the patient, their doctor, family and loved ones would all be absolutely certain that a MAID recipient had made the choice. It also ensures that medical practitioners administering MAID are legally protected.

But colleagues, instead of making things easier, some safeguards have actually created more ambiguity. In a case where people have been deemed eligible for a medically assisted death — say, they had an advanced form of cancer that might physically prevent them from uttering that final verbal consent, or they feared that they might fall unconscious from their illness — then their only option would be to end their life prematurely — sooner than necessary — because they would have to end their lives while fully competent and verbal. It was a legal trap that needlessly creates more suffering.

That is exactly what happened to Audrey Parker, a 57-year-old Nova Scotia woman with stage 4 breast cancer, who had to end her life two months before Christmas, due only to a poorly conceived “safeguard” in the law.

Countless others likely had to make a similar decision — we have heard many of those stories — before the law was finally changed in March of 2021 thanks to the tireless advocacy of Audrey’s family and friends.

It was an important change and it has paved the way for this bill. Because, as I noted, some people who are eligible for MAID are at risk of losing capacity before their chosen date. And now, thanks to “Audrey’s Amendment,” in a way we now have a very limited version of advance requests in the current law. Limited because it is only for those who have already been assessed and approved for MAID, and only when you’re right at the end, and when a doctor agrees that you might be robbed of that ability to say “yes” or nod your head as final consent in your last moments.

Colleagues, this was the context in which I introduced an amendment last year to Bill C-7 to fully allow for advance requests. My hope was to extend the right to an advance request to those whose death was not imminent but who would inevitably lose their right to consent. This is, of course, the case for those with dementia or Alzheimer’s, which is why the right to make their views known in advance is so key.

I wish to thank so many of you for helping me pass that amendment here in this chamber. It was a powerful moment. Sadly, though, it was later rejected by the government of the day. I genuinely do not understand why the government said “no” to the wishes of this chamber and to the stated wishes of so many Canadians. Instead, the issue was handed over to a special joint parliamentary committee for more study.

As we see so often, the people — Canadians — are more compassionate and open-minded than the government, as was the Supreme Court of Canada, who led the way.

We also see provinces moving forward on this. The Quebec National Assembly Select Committee on Dying with Dignity recommended an advance directive for medical aid in dying in 2012. The Provincial-Territorial Expert Advisory Group on Physician-Assisted Dying: Final Report sought clarity from the government to include advance requests in any upcoming legislation.

Even the Council of Canadian Academies’ reports on advance requests, mature minors and mental disorders — though prohibited from making any actual recommendations — proposed possible levels of accessibility for legislators to consider when amending future legislation.

And remember that our first Special Joint Committee on Physician-Assisted Dying, leading up to Bill C-14, stated, in its seventh recommendation:

That the permission to use advance requests for medical assistance in dying be allowed any time after one is diagnosed with a condition that is reasonably likely to cause loss of competence or after a diagnosis of a grievous or irremediable condition but before the suffering becomes intolerable.

All those hearings, expert testimonies and recommendations — a decade of work. Colleagues, that is why I introduced my amendment to Bill C-7 and why I believe it passed here in this chamber.

Not everyone will choose this option for themselves, but they believe others should have the choice. Yet, somehow it still wasn’t enough, and still the people of Canada continue to seek the right to advance requests in 2022.

So that is exactly what this bill now aims to do. There are signs that the political climate is changing. Earlier this year, in Quebec, an all-party committee put forward 11 recommendations, 10 of which propose a workable model for advance requests. That provided significant direction on the scope of this bill and was also the inspiration for the Quebec government’s Bill 38, in limbo at this moment due to the recent election.

It was a reasoned bill and set out what I believe to be an appropriate level of safeguards. I urge colleagues to look at the bill to see what a provincial framework for advance requests would look like.

But there are concerns that, if passed, any provincial advance request regime will still be vulnerable — as would the medical practitioners — if the federal law does not change. So even if Bill 38 is passed, Quebec doctors could go to jail for honouring an advance request, even if it’s legally permitted in their province but not by Ottawa.

The Supreme Court of Canada has already given the federal government all the room it needs to allow the right to an advance request, so these delays are unjust.

I believe this bill is a remedy. It amends the federal Criminal Code to allow for advance requests. It is not overly prescriptive in its approach, as that is actually the purview of the provinces.

You see, our MAID laws exist as an amendment to the Criminal Code, essentially as an exclusion, and all health-related issues are regulated by the provinces per the Constitution. So this bill merely excludes an advance request — or the use of an advance request — from being considered a criminal act.

The legislation is quite simple. It amends subsection 241.2(3.1), (3.2) and (3.4) of the Criminal Code relating to a medically assisted death. This section is the final consent waiver safeguard, which can now be waived thanks to subsection (3.21) or, as I described earlier, “Audrey’s Amendment.”

The bill also adds another section — (3.22) — which allows a person and their doctor to prepare a written set of specified conditions and state that when these medically assessed behaviours or conditions are present, that would help define the time when the person would want MAID to be performed. It is the crux of this bill.

Of course, they would have to have been diagnosed with a serious or incurable illness, disease or disability to be eligible for MAID in the future. Spelling out the conditions would exist on paper, even before they are assessed and approved for MAID.

Section (3.22)(a) states that a person may be able to make a declaration in writing that a medical practitioner or nurse practitioner can perform MAID without final consent as long as the conditions of suffering are clearly identified in the advance request, and that those conditions can be easily observed by the medical or nurse practitioner.

This is an important distinction from what we currently have in the law. Subsection 3.21, the so-called “Audrey’s Amendment,” allows final consent to be waived if there was agreement between a MAID recipient and their doctor to have MAID performed on a specific day, and if that person’s suffering and physical state have prevented them from being able to make that final verbal confirmation.

Subsection 3.22 affords the same right to Canadians diagnosed with a serious and incurable illness, disease or disability, and who don’t yet have a date set for a medically assisted death but have established a clear set of criteria for when they want their suffering to end.

Paragraph 3.22(b) of the bill requires an advance request to be no more than five years old. This means it would need to be updated regularly to make sure it remains a person’s wish and intent and that is what they really want when they have lost control of their circumstances.

That timeline was decided after consultations with various stakeholders and groups such as the Alzheimer Society of Canada and the Canadian Association of MAiD Assessors and Providers, known as CAMAP.

But if the Social Affairs Committee of this place were to advise that a three-year update is appropriate, I would absolutely concur. Whatever gives the most people the most peace of mind is what we should do.

Paragraph 3.22(c) in the bill requires an advance request to include the consent to have MAID performed by the person requesting it, and paragraph (d) requires two independent witnesses to be present during the signing of the advance request.

We should all be discussing end-of-life choices with family, friends, doctors and even lawyers long before the end is nigh. We should all have advance care planning documents and directives, and they are readily available online. They should be updated regularly so that your records and your intentions, over time, are clear. Clarity and understanding are key to having your wishes honoured.

I believe the scope of this bill finds the right balance. It requires an advance request to be regularly updated. It also requires someone seeking an advance request to discuss that request with their doctor and others — many others — in detail, to ensure they understand what they are doing and agree on what criteria they and their doctor believe to be appropriate.

And you would have to be approved for MAID. It will not circumvent the parameters already established in our current laws, or the scope recommended by any of our federal reports. It will not compel anyone to choose MAID, nor can it be used as a coercive tactic. It simply gives Canadians the assurance that, in the event their disease, illness or disability worsens to the point where they can no longer consent to MAID, their wishes will be respected.

Of course, the bill will benefit from study by our Social Affairs Committee. Health Canada and the provinces need to create regulatory frameworks to allow for advance requests, and no doubt they would benefit from our advice here.

There is also the issue of how an advance request would be stored. Will an online registry be needed or be created? What happens if someone travels between provinces? What if they wish to change the set of specified conditions or opt out of the advance request entirely?

I personally believe that anyone should have the right to an advance request in a living will. No one who loses capacity unexpectedly — through accident or stroke, for example — should be forced to live the rest of their life incapacitated until their death. That is why we have “do not resuscitate” laws. I see an advance request as exercising that same right. Our well-stated, well-documented decisions on our own lives should be respected even after losing our conscious ability to confirm that decision in the moment.

But these are all important and very complicated issues that I know our committee would study and consider. Again, if our MAID laws were not tied to the Criminal Code, then we could simply address many of these issues and concerns legislatively. But, sadly, that is not the case.

Finally, colleagues, allow me one last comment on why this bill is before the Senate now rather than after the Special Joint Committee on Medical Assistance in Dying has finished its final report.

As I noted earlier, the committee is spending valuable time relitigating the concept of MAID. We have, indeed, heard from many witnesses representing the full spectrum of views on this issue, and I do hope this eventually leads to the crafting of actual recommendations that would be specific and useful for future legislation. But I think Senate committees are better able to report on matters in a timely way, and time is of the essence.

The government’s action or inaction is often frustrating for the thousands of Canadians awaiting decisions. Their lives and their deaths are too often trapped in our legislative limbo.

In The Meditations, Marcus Aurelius wrote:

. . . every day more of our life is used up and less and less of it is left, but this too: if we live longer, can we be sure our mind will still be up to understanding the world . . . .

So we need to hurry.

Not just because we move daily closer to death but also because our understanding—our grasp of the world—may be gone before we get there.

Colleagues, we do need to hurry. This bill will help those whose grasp of the world is fading. This bill is needed and wanted by so many.

Thank you for listening and know that I am grateful for your support if you can offer it. Thank you.