Rose pursuant to notice of October 27, 2020:

That she will call the attention of the Senate to:

(a)a September 2019 Quebec Superior Court ruling, which declared parts of federal and provincial law relating to medical assistance in dying (MAiD) to be too restrictive;

(b)the impact of the COVID-19 pandemic on MAiD recipients and practitioners, including restrictions to access, shortages of personal protective equipment and a surge in demand;

(c)the ongoing and tireless work of Dying with Dignity Canada, a non-for-profit organization that advocates for vulnerable Canadians regarding their right to die;

(d)the findings of the federally mandated, December 2018 Canadian Association of Academies report relating to advance requests in medical assistance in dying; and

(e)the urgent need for the Senate to study and propose new rules pertaining to advance requests for medical assistance in dying.

She said: Honourable senators, we deal with death in many forms every day of our lives. The death of relationships or careers, and too often in the days of COVID, the death of a loved one. If we have lived a decent life, worked hard to do and be our best, then a life lived with dignity should be allowed to meet a dignified end.

Honourable senators, these words may be familiar to you. Since 2015, I have made many interventions on the issue of advanced requests. I began this particular inquiry back in February, then prorogation and, of course, none of us could have predicted the global pandemic that upended our lives, created economic chaos and has turned long-term care centres into epicentres. Now with restrictions in place across the country, seniors face isolation and the fear of death without the company of friends or the love of family.

It is no surprise then that inquiries into medical assistance in dying, or MAID as it’s called, have surged since the pandemic hit. And the faults of our existing legislation have become even more painfully apparent. Doctors are hesitant to perform MAID due to safety concerns. Shortages of PPE have delayed or prevented MAID from being performed. Those wanting the peace of mind now for a peaceful death at a time of their choosing, before losing the conscious capacity to make that choice, continue to be denied that right. It is shameful.

I believe it is our personal right and our profound responsibility to make end-of-life decisions for ourselves. And it is our responsibility as legislators to sort out the role of governments, doctors and families, in providing for choices around such a fundamental and difficult decision.

I have come to my views watching my parents die, slowly and painfully; my father to cancers, my mother to Alzheimer’s. The suffering was unnecessary and preventable. The only kindness they asked for when their minds were clear was to be spared that inevitable fate. The laws denied them the right to be heard, the right to have their lifelong wishes respected, the desire to end their life at a time and in a manner of their choosing.

Without the possibility of advance requests for MAID, we have seen Canadians with terminal illnesses ending their lives prematurely for fear of losing the option — or worse — spending the last moments of their lives confused and fearful that they will lose consciousness before receiving it, forced to live on without awareness or faculties or resources: financial or human. If a person loses the capacity to consent, or if they do not have an illness that is deemed terminal, or a death that is deemed reasonably foreseeable, they must accept an unknown fate, and that is cruel.

The truly brutal Catch-22 is that, right now, Canadians diagnosed with dementia and Alzheimer’s are denied, from that moment forward. From the moment of diagnosis, they are denied the right to request MAID when their condition inevitably worsens, even though today they are symptom-free and able to make a sound decision and request about their future.

Astonishingly, Alzheimer’s is not considered a serious enough condition to warrant access to MAID. But for any of us who have witnessed that slow decent into hell, this is uncivilized and inhumane. So, many will likely spend the rest of their lives and certainly their final days with strangers who were once their loved ones. Or they will spend months or years anticipating the worst and go on to suffer alone in their now unfamiliar worlds, with the painful flashes of awareness where they know they are no longer who they once were. They lose their dignity, their character, their personality and their choices.

So here we are. No one can make a written declaration for MAID, known as an advance request, before, and certainly not after losing the capacity to consent. It is inconsistent with our law and with precedent. It is unfair in the extreme. Fortunately, last fall, the Quebec Superior Court ruling struck down the “reasonably foreseeable” requirement to qualify for MAID and the section of Quebec law that says people must be at the end of life. The Quebec court agrees that no one can prevent our right, per the Charter of Rights and Freedoms, to make choices relating to our own right to life, liberty and security of person. Our laws must reflect this right.

We can look to recent reports requested by the government itself to get some sense of what the criteria for “advance request” legislation could look like. The Council of Canadian Academies, though prohibited by government from actually making recommendations, highlighted three levels of accessibility that the government could take into account.

The first is when someone has already been approved for MAID but is unsure how long they have left. And this was the devastating situation for 57-year-old Audrey Parker who had to decide to receive MAID prematurely, before her stage IV breast cancer could spread to her brain, thus preventing her from being eligible to request it.

The second scenario is to allow MAID for someone who has been diagnosed with a life-threatening illness but who is not yet eligible. People in the early stages of Alzheimer’s and dementia could fall into this group, but the language regarding this illness must be made explicit.

The third change would allow for all Canadians, whether or not they have been approved for MAID, to make an advance request in a living will. But, again, that would still have to be given the weight of law.

I personally believe that anyone should have the right to a legal advance request in a living will. No one who loses capacity unexpectedly in an accident should be forced to live the rest of their life in a hospital bed until they die. That’s why we have pre‑existing, do-not-resuscitate orders. I see an advance request as an exercise of that same right. Our clearly stated, well-documented decisions on our own lives should be respected and upheld, even after losing conscious ability to reaffirm that decision in the moment.

Canadians overwhelmingly support advance requests; 86% agree that people with serious degenerative and incurable disease should be able to request and obtain medical assistance in dying. And 74% said MAID should be accessible to those with incurable diseases, even if their death is not imminent.

It is now so clear that the courts, advocacy and patient groups, and the general public agree that we should be able to make an advance request for ourselves and for the peace of mind of our families.

Canadians understand that MAID legislation is about choices. It’s not about forcing anyone to die or imposing it as some sort of affordable option to deal with too many aging seniors. We all agree there must be protections in the law for the vulnerable, people with disabilities or those suffering from mental illness. We must also continue to help provinces increase palliative care services, but the existing laws have created serious gaps in accessibility. The laws are not administered fairly or consistently, and not in a timely manner.

It is particularly difficult in rural communities, often hours from a city hospital and with limited access to doctors and lawyers. In my province of Saskatchewan, there is a disparity between those approved for MAID and those who actually receive it. In 2018, only 67 of the 172 approved MAID requests in Saskatchewan were actually performed.

Some, including doctors, feel uneasy about increasing the scope of MAID. This is an important concern, but so too is accessibility for patients, especially these days. No one will ask doctors to do something they feel is a breach of their oath, but they should be obliged to refer patients to someone who will respect the wishes and needs of the patient.

Many of us who have lived through this nightmare are concerned for our own futures. Alzheimer’s is a likely diagnosis in my life, given my family history. I have no children, no husband to advocate for me. So, please, let me and others like me make a request in advance.

As legislators, I believe we owe it to our families, our seniors, our most vulnerable, our medical practitioners, and most importantly ourselves, to secure that right to a quality of life and most certainly to a quality of death. Thank you.

Honourable senators, I would like to ask a question if my honourable colleague accepts.

Senator Wallin, I want to thank you for making this speech and for your ongoing reflection and study on this. We have talked before and we do share the importance of autonomy and self-determination, for sure.

You did mention the summary of the CCA report. I want to have your reflection on this. Somewhere in the report, it does say that when it comes to advance requests, like other measures, some organizations will say they may impact how society values individuals with capacity loss. We have heard that sometimes it will increase stigma.

The report does say that it has little evidence. I have never really read a lot of evidence supporting that, but I wanted to hear from you because I know you have spent a lot of time studying and reflecting on that, and if it is your finding that some organizations or individuals opposing advanced requests will say that it sends a message that if you lose capacity, your life has less value. Do you have any thoughts on that?

As I have tried to state here and on many other occasions, this is a matter of personal choice. There are so many safeguards in the system to make sure that outsiders or family members cannot impose this on someone who has diminished capacity or who is losing capacity over time. Those safeguards are there. There is a whole separate debate around mental illness and all of those issues.

This is a pretty specific issue, and we have been talking about it since the Supreme Court first ruled. It’s advanced requests for people who can make that deliberate decision early in their life, or before they have been diagnosed, or before some condition has incapacitated them in some way. That in itself declares that it’s a very circumscribed group. We are not just saying that because there is such a thing as advanced request, this can somehow be forced on someone. There is no mechanism to do that.

In my family, my sister has worked for many years with the mentally and physically disadvantaged. There are many protections in the system for family members who even wanted to access money or reject time spent with people who are intellectually disabled. There are many protections in the system. That’s not what makes me nervous. What makes me concerned is that people have to live a life that they have made explicit and clear they do not want to live in certain circumstances.

I referred to my parents. I will not get into it in detail, but they were very clear about this, they did not want to be incapacitated in that way. My mother was a teacher, a smart woman who led and was an example. We talked about this because her mother had gone through it too. She said, “I just do not believe that that is life. If I can’t participate, if I don’t recognize the people that I love and are part of my family and that I care about, what is the purpose of this existence?”

I don’t want to get too existential here, but we have circumscribed the rules and the regulations. Advanced requests are a clear, narrow right that people should be afforded in a society where we have all of the legal and civil protections that we know exist.

Did you want to ask a question, Senator Pate?

Senator Wallin, your time has expired, but there is a senator who wishes to ask a question. Are you asking for five more minutes?

Yes. Thank you.

Are there any senators opposed?

I believe that if someone with disabilities or someone who is in prison is being offered MAID, then the doctor in that situation should lose their licence immediately.