That line from the anti-nuclear bomb folksong “Atomic Talking Blues” has been swirling around my brain since the release of recommendations by the joint Parliamentary Committee on physician-assisted dying. The song refers to Einstein’s sober conclusion that we are not as smart as we think we are about scientific advancements particularly those that take us into uncharted territory.
I have the same concern about where we might be headed with physician-assisted dying. In fact, I’m scared. Why?
Because the folks I’ve lived, loved, worked, fought and played with for most of my life are scared. We – individuals, families, friends and supporters – live not just with the vulnerability associated with disability, mental illness, dementia and ageing but also with society’s aversion to vulnerability.
When so many people with disabilities and their families are scared I’m scared.
Here’s what we are NOT afraid of.
We are not afraid of dying or no more than anyone else.
We are not afraid of vulnerability. We know it is possible to live, love and thrive with vulnerability.
We are, however, afraid that:
- Disability, physical and mental limitation and vulnerability will continue to get confused with terminal illness.
- Pain will be held against those we care about despite their ability to manage and indeed transcend it. For example, I know of one young man who lives with unremitting pain and whom the medical system has declared ‘terminal.’ Yet he is a successful social entrepreneur and has an active social media following.
- The decision by vulnerable people on whether or not to choose physician-assisted death will be taken away from them.
These are not irrational fears. As a parent advocate for people with disabilities for more than three decades, I’ve witnessed needless deaths and been involved in a number of efforts to prevent others from dying because of medical neglect and ignorance.
Sadly the current legal discussion about physician-assisted death primarily reveals to Canadians the fear-based side of the disability world. I also know that world to be openhearted. I’m worried that the wisdom of people with disabilities about what constitutes a good life and a good death will be lost at a time when it is needed most.
I accept the right to choose active euthanasia for the small minority of people who will ultimately avail themselves of that option. But rights don’t exist in isolation. They carry obligations to ensure that we have sufficient safeguards to address the concerns of a much larger minority of vulnerable Canadians.
That’s why I signed on as an advisor to the Vulnerable Persons Standard developed by the Canadian Association for Community Living. Their five guidelines were just released.
The Vulnerable Persons Standard is not the only contribution I want to make. I also want to be part of a robust conversation about what it will take to ensure all Canadians experience a good death. Until then I’m heeding Einstein’s advice. It’s best to be cautious when we unleash something we’ve never done before.
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Thank-you, Al, for your wise words. In addition to the fears you note, I am also deeply concerned about the absence of the voices of those who suffer but choose not to be defined by that suffering. Or those who once contemplated ending their lives, but found hope and strength to carry on. What about those who lovingly care for the chronically or terminally ill – will they be deemed “heartless”? Will the resources to support physician-assisted death come from our already stretched palliative care services?
Even more than these questions, I worry about the message that society is sending: it would appear that pain (physical or other), loss of independence, or loss of dignity by some standard, translate into loss of the value of life. But even imperfect life is precious. I acknowledge that there are intolerable levels of suffering that we must do our best to alleviate. Perhaps if we focus more energy on showing love, hope, patience, caring, and respect for all, there will be less of the despair that leads to choosing death as the only alternative.