Please Come, Walk with Me

Dr. Ron Posno, age 80, is a tireless advocate for the right to end-of-life choice. In this moving piece, he shares his experience living with dementia and his personal perspective on Canada’s medical assistance in dying (MAID) legislation.

I am an eighty-year-old man… with dementia… and when I’m ready, I want MAID.

We can walk this together — preferably hand-in-hand. With obstacles to clear, we can pace our way to fulfilling the promise of medical assistance in dying.

Let’s start…

MAID might be the most significant health legislation since the creation of Medicare in 1968. It began with the direction of the Supreme Court of Canada in February 2015 (the Carter decision) for the government of Canada to create laws to support “medically assisted choice of dying as a right for all Canadians.” The previous law “forced patients to endure intolerable suffering against their wishes and denied them autonomy over their bodies.”

The Court did not say that people with dementia, or people experiencing mental health issues, or minors (under 18 years) are lesser Canadians and need be excluded. The Court did not say that such persons are “vulnerable and need to be protected.” The original lawmakers added all of that, in spite of any such recommendation from the Federal Expert Panel or the joint House of Commons Special Committee.

Within 18 months, three different lawsuits were filed in three provinces — BC, ON, and QC on behalf of suffering Canadians protesting the inadequacy of MAID.

In February, the federal government introduced Bill C-7 in response to direction from the Superior Court of Quebec to correct an insufficiency of MAID. C-7 would eliminate the “late-stage consent requirement” for Audrey Parker and would permit MAID for people like the plaintiffs from Quebec (Truchon & Gladu). Good, too, that people like Sue Rodriguez, Kay Carter and Julia Lamb whose deaths are/were not “reasonably foreseeable” can finally be accommodated. Good for them, but not people with dementia (they are not “vulnerable” and must be “protected”). It reduced the requirement of two Independent Witnesses to one… and it also exchanged a ten-day “reflection period” for those facing imminent death for a ninety-day period for all others whose death may not be so imminent, even though they may be experiencing extreme pain and agony. All in all, small steps in the right direction (as directed by the Superior Court) and a few “nudges’ towards compliance with the original direction of the Supreme Court of Canada in 2015.

After creating C-7, the Federal Government requested and received a four-month deadline extension from the Superior Court of Quebec.

C-7 is at second reading in the House of Commons. If it passes into law, is an improvement; unfortunately, it is not enough. But there is more to come.

In January, the Government “consulted” the people of Canada. It provided access to a questionnaire type survey which closed in two weeks — January 27. It captured our attention with almost 300,000 respondents. More than any other survey, ever! Most surveys get less than 2,200 respondents… and at one point, the survey was so overwhelmed that it was unavailable for a period of time. Many respondents reported complete frustration with the questionnaire. “It was far too ambiguous; it was too open-ended; what did it mean – all I wanted was to the right to ask for MAID.”

Do Canadians want a better MAID? The answer is undoubtedly affirmative. A separate Leger Poll conducted during the same time period reported that almost 87% of all Canadians want a better MAID.

Are you still with me?  We have miles to go, yet.

Following  the original passage of MAID in June 2016, the Federal Government contracted the Canadian Council of Academies to study three things – advance requests, mature minors and mental health.  Those reports were filed by December of 2018. (the same organization that created legislative suggestions to study and submit by December 2018 a listing of possible problems with MAID). Interestingly, the Government specified “problems” — not solutions nor suggestions.

What’s with this June review of the federal MAID legislation? C-14 provided that four years after becoming into force, the Government perform  a Review of the Report and MAID for June, 2020.

The CCA Report is fascinating — particularly for academics. Its 224 pages is mostly conjecture and hypotheticals. It has some reality: problems reported in the Netherlands, Belgium, Switzerland and Oregon, all nations or a state which provide assisted death.

By the way, these countries have had assisted dying laws for years — some more than twenty. Very few problems have been reported.

Speaking of Belgium, here’s what comes after almost twenty years of equivocation. They’ve just decided to change their laws to permit Advance Requests for anyone diagnosed with the prospect of facing an agonizing death. The patient can apply to his/her physician — in advance — while still cogent and not face any prospect of a protracted waiting (like a period of reflection). Dying assistance can be provided when it’s wanted as specified in the request by either the patient or substitute decision maker. The request can be withdrawn at any time by the patient. Simple, easy and entirely based on private, doctor/patient considerations.

Warning: we are now entering dangerous territory. I am going to kick aside some obstacles and go to a straight path. Please stay with me.

First of all, I want to dispense with all conjecture and hypotheticals. In the academic world, we can afford the time and the intellectual luxury of exploring possible problems in search of perfect solutions. But in the real world, we are more often limited to realities and what’s possible. Do we want problems, or do we want solutions? With our imperfect MAID, we have real people in unendurable agony experiencing real despair because they are denied a “beacon of hope.”  I have personally seen and heard real people pleading for help — many of whom resort to illegal drugs, voluntary starvation, or morphine from desperately harassed and sympathetic medical practitioners. Our practitioners see, hear and feel the real agony and despair. Practitioners know what to do and they can do it right away, but MAID denies them any exercise of professional judgement and compassion.

Our bioethicists and academics are quick to jump in with warning… “we must protect our vulnerable; we need safe-guards and procedures.” Who are they really protecting… the practitioner or the legislator? Not the patient who’s pleading for help. His/her desperate cries go unheard while the “doers” have to wade through all the protocols and bureaucratic procedures.

The patient is only vulnerable because s/he’s not getting help — the help s/he has a right to receive. The “doers” know reality: the academics only “think” it. Real medical care is much than an intellectual exercise.

MAID is in danger of becoming a legalistic, bureaucratic procedure. It is not patient-centred. Why can’t MAID be considered as a medical practice and a consequence of a patient/physician discussion/decision?

Physicians deal with life/death decisions, choices and treatments all the time. We have used a “Do Not Resuscitate” medical procedure for years. The forms are in place and the practice is well established. We don’t need a bio-ethical and academic review of the safe-guards and protocols. Additionally, a patient or Substitute Decision-Maker can request palliative care sedation without the enduring the rigours of forms and bureaucratic procedures. Why not MAID — is it not a medical practice?

Abortion is legal and has been practised across this country for years. Not everyone agrees and prospective mothers are possibly vulnerable, but it is a personal choice of the patient and a consequence of a patient/physician decision. Why is MAID regarded as something more different and difficult?

We have had safeguards for medical practice for years. Colleges for physicians, nurses, and all aspects of medical practice exist and are used by the “doers” — the professionals to establish best practices and disciplines. They don’t need outside laws (possibly “bad” law), created by non-practitioners to manage and govern medical practice.

How do you want to die? A straight-forward question… and if you’re older than fifty, you’ve likely thought about it. Most people answer with something like, “I don’t know; maybe I’ll just go to bed and not wake up.” That’s simple — no fuss, but most of all, it is personal and private. It’s also dignified… and dignity is likely the most defining characteristic.

Most dying patients (and people in general) would say they don’t want tubes, wires, beeping machines, soiled clothing… and people they love, compelled to stand and watch — fearful, helpless and stricken with grief. And what does MAID bring to the picture? Currently, it’s two strangers or, as defined by the legislation, two Independent Witnesses to observe and attest to a signature. C-7 reduces that requirement to one witness, but that’s a meek concession to the need for dignity and privacy. During the past two years, my wife and I have volunteered to serve as Independent Witnesses through a program of Dying With Dignity Canada — a national organization of people trying to support people seeking a better death.

In more than sixty cases, we’ve been accepted by patients and family members with mixed feelings of resentment and relief. They don’t want strangers, but they need us. They want privacy and they want dignity. The process of MAID denies both. In fact, I worry that the so-called safeguard of requiring an Independent Witness stops many people in need from asking for such assistance simply because they don’t want anyone to know — no one on the street, no one on the concession road, and no one in the community. MAID and the requesting of MAID must be respected as a personal choice. There is no need for anyone to know but the patient and his/her physician. Medically assisted dying must be private and confidential, just like any other medical procedure. To deny privacy is to deny dignity — and that’s personal and most important to people choosing medical assistance in dying.

And here’s the last step we need to take and it’s not dangerous or difficult. It’s just “good.”

The national Alzheimer’s Society of Canada has a wonderful policy: “Nothing About Us — Without Us.”  A wonderful idea, simple and even easier to implement. I want to emphasize the critical importance of having people with lived experience on the Review Panel; people with dementia or some other disease or condition leading to an agonized death? By all means, the ultimate “users” should be on the review panel. Just because they have been diagnosed with a problem doesn’t immediately render them incapable of cogent and coherent thought. Most people, when diagnosed with dementia, have five to ten years left for rational and responsible thinking. They have actual (real) experience to share. They are available and willing — even anxious — to participate. Just ask them. Please!

This is the end of our walk. Thanks for coming.

I am an eighty-year-old man… with dementia… and I want MAID… when I’m ready.