A widow’s story: Why Bill 18 creates hurdles for the dying |
It is 3 a.m. on Aug. 20, 2019. Scott and I are facing each other on the love seat, our legs intertwined. He is looking at me deeply with both love and sadness in his eyes.
We shared this quiet moment knowing it was our last night. His last night as a dad and a husband. His last night of pain, of discomfort, and in this body that had betrayed him.
He was mortified by his loss of autonomy and dignity; he could no longer care for himself without my help. And this is exactly what he had wanted to avoid with the availability of Medical Assistance In Dying (MAID). He had watched his once-strong father wither away and die from cancer. He was grateful to have a choice in how his life ended, but Scott did not die as he had hoped before the worst of his suffering set in.
The day before had been difficult for him. It took us several hours of excruciating effort to help him navigate the stairs and a shower. A simple act that left his large, six foot one inch frame utterly depleted. His tumours had compressed nerves, which caused terrible pain and reduced his mobility despite still having a strong heart and muscles.
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The truth is, palliative care has its limits, and the idea that it can provide total comfort is a myth that Scott and I learned first-hand.
Scott’s journey to get approved for MAID in Alberta was a struggle, with misinformation and administrative delays. It took 15 days to complete the assessments he needed as his autonomy rapidly vanished.
In June that year, Scott asked his oncologist about MAID. He told Scott he was a “big, healthy guy” despite the cancer, and thought he had a lot of life left in him. This was our last meeting. The cancer had already won, and his treatment plan was shifted to palliative pain management.
I believe that Scott’s robust appearance would have disqualified him under the Alberta government’s new definitions. His strong heart, which did take longer than some to stop beating, would have certainly clouded the issue of whether his death was imminent within 12 months. This interference would have forced a “big, healthy guy” to wither away in pain for months, denied the very approval he needed to end his suffering.
In contrast, I supported a dear friend who was like a mom to me in her desire to have MAID a couple of years later. She was elderly and frail when admitted to hospital in British Columbia. Her attending doctor discussed her condition and shared the options available in her end-of-life medical care. He discussed palliative care, hospice, at-home care and MAID.
She was relieved to have the information presented clearly and thoughtfully. It was not coercion. It was a medical professional helping a dying woman navigate her end of life.
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Under the proposed Bill 18 in Alberta, her doctor would have been legally prohibited from giving that information to her, unless she said the word first. How many people will suffer in silence simply because they do not know what to ask for?
Our experience and difficulty finding the correct information and then obtaining Scott’s approval added another layer of stress to an already difficult time for Scott and our family.
Why is the Government of Alberta forcing dying and suffering patients to be the ones to initiate a conversation about this legal medical right? Why do they want to make it more difficult for suffering families to find their way?
MAID represents less than four per cent of all deaths in Alberta, and most of those MAID deaths are a result of cancer. With a $9-billion deficit and our emergency rooms in real crisis across Alberta, why is the government spending legislative energy on “safeguards” that act as hurdles for the dying?
The morning of Scott’s death was so peaceful. He enjoyed a bit of coffee, and our dog was by his side for most of the morning as we waited.
The doorbell rang. My heart raced, and tears immediately poured from my eyes.
His doctor was so caring and respectful of this incredibly private moment in our lives. Scott spoke to her about his reasons for wanting to die and confided to her that he felt quite apathetic about the events that were about to unfold. She comforted him by saying that his feelings confirmed he was ready and at peace with his decision.
He spoke lovingly to each daughter and tried to share his wisdom and advice that would stay with them forever. He thanked me for caring for him, and apologized for getting sick, for dying, and for being cranky and difficult when he was in pain.
In the end, our final words were simple and perfect. What did we need to say to one another on this last morning together as best friends and partners in life? We told each other how very much we loved one another and enjoyed our life together.
Scott’s ability to die with dignity was achieved through a battle with the system. And the Alberta government wants only to make this system much more difficult.
A Canadian’s right to peace at the end of life shouldn’t depend on which side of the Rockies they live on.
Siobhan Chinnery is a Calgary-based supply chain executive, leadership coach, and a volunteer with Dying with Dignity Canada. She writes this as a private citizen.