It is one thing to talk in the abstract about the possibility that one’s mother will have a medically assisted death. It is quite another to be at the other end of the phone when she says she’s going to pursue it, as I was this past February.
Like many people in their 80s, my Mom had an accumulation of health troubles: her blood pressure was high, her thyroid count was low, her heartbeat was irregular, her blood was awash with the wrong kinds of cells. She was afraid to go out in the winter for fear she might fall; she was afraid to go out in the summer because her leukemia drugs made her skin especially vulnerable to the sun. In November, she’d had part of her thumb amputated to deal with a rare melanoma. In December, she injured her wrist in the high-risk enterprise of chair yoga and she’d had to adjust, again, to the diminishment of her strength and the demoralization of being further confined.
In January, a fall and a chest infection came on top of all that and on top, as well, of the loneliness she’d lived with since Dad died three years ago. So Mom’s decision to explore MAiD at this time did not come as a surprise.
What surprised me, in the best way, was how her family doctor responded. Dr. P. acknowledged Mom’s request fully and wholeheartedly, looking ahead to a day when she’d have a physician or a nurse practitioner help her to end her life. At the same time, she offered Mom all of the rich benefits that can come with a palliative care approach.
We might hope that such a response would be common practice. But if it were, you would not know that from the messages sent from the major palliative care organizations in the country.
In November 2019, the Canadian Hospice Palliative Care Association (CHPCA) and the Canadian Society of Palliative Care Physicians (CSPCP) released a Joint Call to Action on the relationship between palliative care and MAiD. In it, they deliberately distinguished palliative care from MAiD: “MAiD is not part of hospice palliative care; it is not an ‘extension’ of palliative care nor is it one of the tools ‘in the palliative care basket…’ ”
On its website, the CSPCP links to a letter written by Dr. Balfour Mount, one of the founders of palliative care in Canada. He asserts the differences in stronger terms. The term “medical assistance in dying,” Mount writes, is a “euphemism… to define euthanasia/ assisted suicide.” The vision for palliative care “was never to intentionally hasten death… what Canadian legislators have termed ‘medical assistance in dying’ is not part of the practice of palliative care.”
From the perspective of Canada’s largest palliative care organizations and one of its most influential leaders, then, MAiD is substantially different from palliative care, perhaps even incompatible with it.
Yet as a daughter, I experienced the connectedness and compatibility of the two practices. As a healthcare researcher, I was motivated to write this as a contribution to the public discussion about the relationship between MAiD and palliative care.
• • •
Three years ago, Mom raised the topic of MAiD with one of her physicians. She wanted to know if, when the time came, it would be an option for her. The physician’s reluctance was clear: “Well, I’m not a fan of MAiD, there are so many things we can try before it comes to that and, in my experience, a lot of good happens for families in those last weeks of life …” Last year, Mom raised MAiD again with another doctor. He too was discouraging and assured her that when the time came, she would have good palliative care.
We were troubled by these interactions. The realization that the physicians Mom relied on were not prepared to even talk with her about MAiD – the realization that she might have to advocate for herself, or defend her wishes against someone else’s views and values as her life was ending and her energy low – was dismaying to her and to me. At the time, it didn’t occur to either of us that Mom could receive palliative care and also have a medically assisted death.
In their first conversation about MAiD, Dr. P invited Mom to talk about her future, what she wanted for her health and well-being and what healthcare interventions she wanted to avoid. Mom spoke about her discomfort, her pain and her shortness of breath and she welcomed the medications and measures Dr. P. offered to ease her symptoms. In a later conversation, following the requirements for a MAiD assessment, Dr. P. talked with Mom about the possibility of hospice care and described other palliative care measures. But she never implied – as I half expected her to – that Mom would or should change her mind about MAiD if her symptoms were better controlled or if she had other care options.
Dr. P. took Mom’s request for an assisted death at face value – and seriously. Yet she also held it lightly, making space around it: “If at any point, at any point, you decide you don’t want this, it just goes away” (a wave of her hand showed how easy this would be). She gave Mom the chance to acknowledge how very tired she was and she helped Mom formalize her request for MAiD and make contact with the community MAiD team. She dropped by unannounced at the house to make sure Mom knew how to use the device that would ease her breathing. Dr. P was not “on the side” of palliative care nor was she on the side of MAiD. She was on Mom’s side.
• • •
In the days that followed her request for MAiD, Mom spoke with each of her kids. She was concerned that my brothers and I might not understand or that it might be too hard for us. But she had reached her limit with medical interventions: she said she felt as though she was always being patched up and the patches were falling off.
In some middle of the night moment, thinking about MAiD and also about the songs that she wanted at her memorial, these lyrics from The Water is Wide came into my mind:
The water is wide, I can not get o’er
And neither have I wings to fly
Give me a boat that will carry two
And both shall row… my love and I.
And I thought, that’s it: we gave her a boat. Her family, and her family doctor, and the MAiD coordinator and assessors and provider, gave her a boat.
She had been rowing for years: managing a slew of pills at their different times of the morning and night, coping with the discomfort and sometimes the pain, adapting over and over to the erosion of her energy and the narrowing of her world.
Once Mom knew that she could have an assisted death, everything about the rowing changed. It was so much less laboured and fraught than it had been and had more of certain kinds of energy and vitality, in large part because the distant shore was made visible, reachable. And knowing that we would all row with her in these last days, in the direction she set, profoundly eased Mom’s suffering. “Relief” was the word she used over and over again to describe her feelings.
• • •
Mount has described the original vision of palliative care as that of “a new medical discipline and community culture of care that enabled living fully at the end of life while minimizing the symptoms and fear of the dying process.”
It is a vision and approach to care that I continue to admire for its enormous contribution to easing people’s pathways at life’s closing, and for the tenacity and humanity of its practitioners and advocates. I’ve witnessed their skilled commitment both in my past research in cancer care and now as part of a team working to support the capacity of primary care providers to deliver palliative care.
The idea that MAiD has no place in realizing this vision was captured vividly by a hospice volunteer I spoke with last year. “MAiD is not medical assistance in dying – it’s medical assistance in death!” She said this with dismay and a kind of outrage, as if MAiD could never be part of a practice and culture of care that enables living fully at the end of life, as if it undermines palliative care or renders it irrelevant.
My Mom received excellent palliative care before, during and following her request for MAiD; palliative care and MAiD unfolded easily and gracefully together. My family’s experience is one among many that might prompt Canada’s palliative care organizations to reconsider their relationship to MAiD, to rethink the current public messages that contribute to pressure on ill people and their families to forego or to remain silent or ashamed about MAiD.
As we enter the fifth year of MAiD provision, with the accumulation of knowledge of how families experience MAiD, I hope CHPCA and CSPCP will be able to lower the walls and build the bridges with MAiD organizations that are possible to build: bridges that support knowledge and skills development among practitioners and foster conversation in families and communities, in the vital space shared between palliative care and MAiD, where so many of us want to live and die.