Without fear

While I sat in the family lounge on the cardiac floor of KGH a few weeks ago waiting for my partner to emerge from bypass surgery, my mind turned to possible worst case scenarios.

I am known for this among my family and close friends. My daughter doesn’t text for a few hours? I assume she has been taken hostage at work or hit by a car while out running. My colleague’s email is more to the point than usual? Obviously, I have deeply offended her in some way, and she doesn’t want to have anything to do with me. I hear a strange noise downstairs in the middle of the night? I am about to be killed by intruders. There’s a message on my phone to call my mother’s long-term care facility? Something terrible must have happened to her.

So far, my imaginings of disaster have been almost entirely unfounded, but I continue to have them, something I should probably discuss with a therapist. (That said, perhaps my mother’s care facility could get in the habit of starting a message with the words: “There’s nothing wrong.” The last time one of these “please call” messages had my heart pounding so hard I could practically hear it, the caller was the hairdresser wondering whether I wanted her to colour my mother’s hair.)

Real is harder than imaginary

My propensity to over-worry notwithstanding, as I sat pondering what could go wrong during last month’s bypass surgery, I felt that anticipating possible unexpected scenarios was not completely inappropriate.

Peter and I have talked many times about what we each would like to happen should we be in a critical health situation; about DNR; MAID and, generally, about our distaste for a long and lingering death. We’re on pretty much the same page on these issues, but, as the January afternoon ticked slowly by, the thought of possibly having to make an actual decision felt very real and scary; much more so than in all our conversations – many of them over a glass of wine or a cocktail  — about the concept of making those decisions.

Fortunately, the surgeon eventually appeared to let us know everything had gone smoothly, and there were no difficult decisions for me to make, but the whole experience has reminded me how important it is for all of us to think these big issues through before we find ourselves standing beside a stretcher carrying our partner or someone else we care about.

Planning ahead

On February 15^th, the federal Special Joint Committee on Medical Assistance in Dying released its most recent report. It covers an array of topics, including palliative care, protections for people with disabilities, MAID for those where mental disorder is the sole underlying medical condition and for mature minors as well as advance requests. All are important issues and received careful, compassionate consideration by the committee.

My greatest interest has always rested with the issue of advance requests, so I read this section the most closely.  If advance requests were to be permitted, this would mean that someone could make a request for MAID when they have the capacity to do so, after receiving a diagnosis that involves the future loss of capacity. In other words, if I were to be diagnosed with dementia while I still had capacity, I could at that time prepare an advance request for MAID to take place later, when I no longer would have capacity.

This would require an amendment to the Criminal Code, but the work of sorting out the details of how advance directives would be managed would fall to the provinces and territories.

Sonia Belanger, Quebec’s minister responsible for seniors, recently introduced Bill 11, which would permit advance requests in just these circumstances.

A recent NANOS poll shows that 80% of Canadians support advance requests, and so does the parliamentary committee.  Recommendation 21 in its report calls for the Criminal Code to be amended “to allow for advance requests following a diagnosis of a serious and incurable medical condition, disease or disorder leading to incapacity.” In recommendation 22, the federal government is directed to work with the provinces and territories, regulatory bodies, provincial and territorial law societies and stakeholders to adopt the necessary safeguards for advance requests. This would include setting out the conditions under which MAID would be permitted.

If you agree, you can sign a letter to your MP calling on the government to move ahead with the appropriate legislation.

A vanishing brain

The majority of witnesses, many of whom provided emotional testimony about watching family members disappear into dementia or other neurodegenerative diseases and disorders, supported the legalization of advance requests.

One such witness was Sandra Demontigny, who is 43 years old, has early onset Alzheimer’s and watched her father’s descent into dementia. Her testimony serves as a powerful incentive to move ahead with advance requests:

“I am working to calm my vanishing brain and my troubled heart. I feel a need to be reassured about my future so that I can do a better job of living out my remaining days . . . .My plan is to make the most of my final years while life is still good, with a free mind and without fear.”