There is a lot to do when someone's care needs change. Although she's 90 years young, my Mum is usually very independent. But a long stay in a hospital bed changed all that for the time being. She will need time and TLC to get her mojo back. In my family, we understand the ebbs and flows of independence and dependency.... and of health and frailty. We are OK with it and we know how to put support in place and how to take it away when it becomes redundant. We know how to have a good time in reduced circumstances and we believe in the value of that experience.
So, back to the car ride and the radio. I was listening to a CBC news story that dominated yesterday's press coverage in Canada. The Supreme Court of British Columbia ruled that Canadian law banning doctor assisted suicide is unconstitutional. In her lengthy and complicated judgement, Judge Lynn Smith wrote, "the law must allow physician-assisted suicide in cases involving patients who are diagnosed with a serious illness or disability and who are experiencing “intolerable” physical or psychological suffering with no chance of improvement."
I have written before about euthanasia - it's a complicated issue and one that is different from doctor assisted suicide. But there was something deeply disturbing about the way that Gloria Taylor talked about her life with ALS and her reasons for challenging the law.
I will paraphrase Taylor from my memory of the radio interview: she said that she had lost the use of her legs, so now, with a power wheelchair, she could not visit her family (except for her mother who happens to have an accessible home). The ALS was causing Taylor to lose her voice. She expressed despondency about not being able to communicating with her children or grandchildren after the complete loss of her speech. She said that the greatest indignity of her life was needing assistance to use public toilets (the assistive devices in her home allowed her to be independent in her own bathroom). And Taylor's worst fear she expressed this way, “To die screaming at the top of my lungs because the pain is so great that I can’t stand it is something I try not to think about”.
So, as the parent of son with complex disabilities, what do I think about all of this?
I believe that pain should be considered separately from dependency matters. That's one thing. Pain management should have its own rules and the law should support patients and doctors working together in the best practice of palliative care. No one should have uncontrolled pain, ever.
To me, Gloria Taylor's remarks reveal a dangerous trend in today's society - an aversion to dependency in all its forms. I believe that we should not support this view and certainly not entrench it into law. Of course, any debilitating and progressive disease is a tragedy for the individual and their family, that is a given. But life with diminished physical capabilities can be very rich, especially with the help of technology.
Let me use Nicholas as an example of how this works. Nick's friends do not have wheelchair accessible homes, so they meet at the pub, or at sports venues. Often, Nicholas hosts his friends and family to take maximum advantage of shared interests. Nicholas is non-speaking, so he uses an Ipad with a software programme called ProloQuo2Go in order to communicate. The adult rehabilitation in our city does a terrific job of equipping ALS sufferers with the equipment they need to communicate non-verbally. Life with fewer physical abilities need not be tragic. Loving relationships combined with assistive technology will see to that.
There will always be people who believe that life is not worth living with reduced capabilities. Even my own father felt that way after his debilitating strokes. But our law should not enable doctors to assist suicide on the basis of increased dependency. Rather, our laws should support society in giving value to meeting dependency needs. Children are dependent, mothers giving birth are dependent, people aging and dying are dependent. It's part of life and we need to support our vulnerable citizens throughout everyone's life cycle.