Dignity – The Ultimate Human Right

by Carolyn Inch                                                                                                                                                               

Why is it taking so long for society to apply the concept of dignity to dying? I ask this question as I recall the fate of my mother, a proud and feisty woman who lingered with us far longer than she would have wanted. She often remarked to her farmer son-in-law who dispatched unwanted barn cats and mongrels dropped off at the end of the road with humane professionalism, “If I get that old-timers disease, take me out to the back 40 and shoot me.” 

Don’t I wish!  Instead, mom’s good constitution kept her alive for years, despite being unable to speak, recognize family, feed or toilet herself. 

I don’t want my children or anyone thinking “I’d rather be dead than live like that” when they see me, as I did for ten years when visiting my mom.  I want to live with dignity and when I can’t, I want to die. 

So will I be able to exercise control over myself and my manner of dying if I lose my mental faculties? And will I be able to enlist the help of the state to die when I choose? 

What is the current law in Canada and how did we get here?

Suicide was decriminalized in Canada in 1972. In 2014, the Province of Quebec legalized “medical aid in dying”, a year prior to the 2015 Supreme Court Carter v Canada (Attorney General) decision that required that the Government of Canada revise the Criminal Code relating to assisted suicide and enact legislation to enable it. 

The series of court decisions that brought Canada to this progressive point were based on challenges to the Criminal Code under the Charter of Rights and Freedom, Section 7, which embeds the right to life, liberty and security of the person. 

The current legislation, Bill C-14 enacted in 2016, is more restrictive than that proposed in the Supreme Court decision. Persons who wish to pursue medical assistance in dying (MAID) must satisfy a long list of eligibility criteria designed to ensure that MAID is not abused by nefarious relatives or others who would gain from someone’s demise.

While Bill C-14 is a giant step forward in the ability of individuals to exercise their freedom of choice over their own person, it doesn’t solve my dilemma of how to die with dignity if I lose my mental faculties. For that, advance consent would need to be legal and there are, at present, two large legal obstacles. One is the timing of the request. I would need to make it within 10 days of MAID and on the day of MAID, I would need to indicate, again, that I want it to happen. The second is that my natural death would need to be reasonably foreseeable. Both conditions are impossible for those suffering from dementia.

Challenges to the Current Law

On September 11, 2019, the Superior Court of Quebec found (Truchon v. Attorney General of Canada) found that  it was unconstitutional to limit access to MAID to people nearing the end of life. While the Courts ruling applies only in Quebec, the Government of Canada launched a process to respond to the ruling and determine public opinion in Canada. 

As a result of an on-line survey which drew over 300,000 responses and other consultative processes, a bill proposing changes to the Criminal Code’s provisions was introduced. The Bill would allow MAID for persons whether their death is reasonably foreseeable or not. This removes one of the obstacles to advance consent. 

This Bill had yet received Royal Assent before the prorogation of parliament and will need to be reintroduced in the next session, which, no doubt it will.

Why not Advance Consent?

In the January 2020 survey, two questions were asked regarding advance consent. They were:

D.1. Imagine that a person makes a request for MAID, is found to be eligible, and is awaiting the procedure. A few days before the procedure, the person loses the capacity to make health care decisions, and cannot provide final consent immediately before the procedure. In your opinion, should a physician or nurse practitioner be allowed to provide MAID to a person in these circumstances?

Of the 300,114 respondents, 235, 852 said yes (78.6%), 19.7% said no and 1.7% didn’t respond. 

The second question is at the heart of my issue. 

D.2. Imagine that a person is diagnosed with a medical illness that, over time, will affect their mind and take away their decision-making capacity, such as Alzheimer’s disease. The person prepares a document that says they consent to receive MAID if specific circumstances arise at a later date, after they are no longer able to consent. In your opinion, should a physician or nurse practitioner be allowed to provide MAID to a person in this situation once the circumstances in their document have arisen and they otherwise meet the MAID criteria, even if they can no longer consent?

In response to this scenario, of the 300,142 respondents 238,431 (79.4%) said yes, with 19.1% saying no and1.5% not responding. 

The fact that almost 80% of people who responded to the survey want to see the law changed to include advance consent gives me some hope that someday it will. Of course, I am wondering why it is not this time around but I realize that we have come a long way in a few years and these are deeply rooted and divisive societal issues. 

So what can I do to minimize the risk of losing my dignity at my death?

Apart from wishing for good luck and good genetics and applying some basic care-taking to maintain good health, there are a few steps I can take. 

An organization that I am a member of, Dying with Dignity Canada, offers a lot of information on patient’s rights, among its various activities. It also has an advance care planning kit, by province, that you can download and discuss with your substitute decision maker. The questionnaires and forms are very thorough and they stipulate that a DNR order is often not enough. I am reminded by them:

When it comes to end-of-life decisions, what you’ve put in writing will carry more weight than something you’ve mentioned in passing. 

I will continue to lobby and approach whoever will listen to further allow choice in our fate through legislative change. 

And who knows? Maybe by the time I need it, the law will have changed and they will have the documentation required to assist me in passing with some semblance of dignity. 

In the end…

Our human dilemma was brought home to me this week in a particularly stark way. My canine companion of more than 14 years was suffering due to lymphoma. Barney still had an appetite, albeit drug induced. His tail, a weapon that had cleared many a coffee table, hadn’t wagged in weeks. His cloudy eyes sought mine in the night, while he panted excessively and told me it was time. 

The family gathered on Labour Day – his “brothers” and “fathers” and me, his adored master, and we celebrated his life with an excess of treats and stories. Then a veterinary team arrived and gently took him into that good night. 

Barney was part of the decision and it was exactly as he would have wanted it. May we be so kind to each other.

Carolyn Inch was seen for 14 years in Ottawa’s Windsor Park walking with a gregarious golden doodle with a large orange ball or a leash in his mouth. 

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