Rose pursuant to notice of December 12, 2019:

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 recent Quebec Ministry of Health and Social Services report, which recommends provisions allowing for advance requests in MAiD, out of a “moral duty to respond to it”;

(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 recommendations 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 a relationship, the death of a career or job, the death of innocence, or the death of a loved one. But if we are willing, these encounters can help ready us for a dignified conclusion to our own life and teach us to face that inevitability with grace.

Honourable senators, I have begun this inquiry because I believe it is our personal right and our 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.

During the debate on Bill C-14, the federal government’s legislative response to the Supreme Court of Canada ruling allowing for medical assistance in dying, we all debated late into the night just how complex and deeply emotional the issue is.

I had come to my own views watching my parents die in two very different but equally horrific ways: my father to painful cancers; my mother to Alzheimer’s. Their suffering was unnecessary and preventable. It was the only kindness they asked for when their minds were clear — to be spared that inevitable fate. But it was not to be. The laws denied them the right to be heard and the right to have their lifelong wishes respected.

These painful journeys are taken by families every day in this country. Every single day Canadians with incurable or irreversible medical conditions suffer needlessly in hospital beds and care homes; and far too many are home alone, even though they have lost physical or intellectual function, because their families are miles or countries away and funds may be limited.

This is just wrong.

Without the possibility of advance requests for medical assistance in dying, we have seen Canadians with terminal illnesses end their lives earlier than they would like or, worse, spend their last moments confused and fearful that they will lose consciousness before receiving assistance, living on without awareness, faculties or resources either financial or human.

If a MAID candidate loses the capacity to consent, 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.

The truly brutal Catch-22 is that Canadians diagnosed with dementia and Alzheimer’s are denied, from the moment of diagnosis, the right to request medical assistance in dying — MAID — even if their condition worsens. And even when they are symptom-free and able to make a sound decision to request medical assistance, they cannot.

Astonishingly, Alzheimer’s is not considered a serious enough condition to warrant medical assistance in dying. For any of us who have witnessed the slow descent into hell, this is uncivilized. Many will 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, often with 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 directive — before, and certainly not after, losing the capacity to consent. It is a Catch-22.

Fortunately, last fall a Québec Superior Court ruling struck down the “reasonably foreseeable” requirement and the section of Québec law that says people must be at the end of life. In her judgment, Justice Christine Baudouin wrote:

The reasonably foreseeable natural death requirement deprives both individuals and claimants of their autonomy and their choice to end their lives at a time and in the manner desired, which must, however, remain an entirely personal decision.

She goes on to say:

This requirement forces them to end their lives while they are still physically able to do so, or to take hasty actions that will cause them to suffer in order to qualify for help and avoid the agony to come.

In this sense, it denies them the right to have a dignified and serene death.

The Québec court agrees that no one can prevent our right, per the Canadian 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.

The court has given the government until March 11 to amend the current law and I am assured that the justice and health ministers are genuinely using this opportunity to improve the legislation. But it is still unclear if this will include advance requests; it must.

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

The first is when somebody has already been approved for MAID but is unsure how long they have left. This was the devastating situation for 57-year-old Audrey Parker, who had to decide to receive MAID before her stage 4 breast cancer could spread to her brain, preventing her from being able to request it.

The second scenario is to allow MAID for someone who has been diagnosed with a life-threatening illness but is not yet eligible. People with early stages of Alzheimer’s and dementia could fall into this group. In my mind, that would be a start but the language regarding this illness must be 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 have to have 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 should be forced to live the rest of their life trapped in a hospital bed, or worse, until they die. That’s why we have do-not-resuscitate orders. I see an advance request as exercising that same right. Our well-stated, well-documented decisions on our own lives should be respected and upheld even after losing our conscious ability to reaffirm that decision in the moment.

Over 300,000 Canadians have responded to the Department of Justice survey and the public overwhelmingly supports advance requests. A Canadian Press survey shows 86 per cent of Canadians agree that people with a serious, degenerative or incurable disease should be able to request and obtain medical assistance in dying. And 74 per cent said MAID should be accessible to those with incurable diseases even if their death is not imminent.

Since Bill C-14 was passed in 2016, we have seen these changes. It is now clear that the courts, advocacy and patient groups and the general public agree; 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 treating it as some 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. And we need to make sure that doctors and care practitioners are taught to never recommend MAID as a first choice when someone with a physical or mental disability seeks medical help or advice.

We must also continue to help the provinces increase palliative care services — Ottawa has promised $6 billion over 10 years — but the existing legislation has created serious gaps in accessibility. The laws are not administered fairly, consistently or 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 requests in Saskatchewan were actually performed.

Some doctors, of course, feel uneasy about increasing the scope of medical assistance in dying. This is an important concern but too much focus on safeguards for doctors will likely create further gaps in accessibility for patients. No one will ever ask them to do something they feel is a breach of their oath, but they should be obliged to refer a patient to someone who will respect the wishes and needs of that patient.

Many of us have lived through this nightmare, or perhaps we are concerned now about our own futures. We all fear the unknown and it is the unknown about our end of life that is the greatest fear of all.

Alzheimer’s is a likely diagnosis in my life given family history. I have no children or husband to advocate for me, so although I have found a MAID doctor who feels comfortable administering my wishes, the decision for my end-of-life will likely fall to a lawyer. I hope they will be able to enforce my rights when I reach my designated point of departure.

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 a quality of death — when possible.

It is said that it is not the length of life but the depth of life that matters. When we have carved out a good life, worked hard to do and be our best, there is no reason why a dignified life needs to meet an undignified end.

We all know the phrase, “Do not go gentle into that good night.”

Senators, I ask you, please, do not let us go gentle into this good fight for dignity in our final days. Thank you.