An impossible dream?

Abstract

The extension of assisted dying to those whose natural death is not reasonably foreseeable has very real implications for how we think about life-limiting illness and the systems of care we design to palliate suffering. We now have a new idea of a life-limiting illness; dying is a result of an illness’s impact on quality of life, not length of life. In this article, I tell the story of “Sam,” whose complex illness and suffering led her to choose an assisted death. I reflect on my own responses to Sam and conclude with a dream for a palliative system of care designed uniquely to support those choosing death over a life of suffering.

Sam struggled with a chronic medical condition that had resulted in decades of pain, fatigue, and symptoms that affected every part of her body. Visits to numerous specialists had provided little help. No one could fully explain, or resolve, the severe symptoms that caused her suffering. Her years of experience with the medical system had not been good. Experiencing a strange form of medical gaslighting, she described most healthcare relationships on a continuum of unhelpful to hostile.

Sam grew up in a close-knit family but tended to think of herself as apart from the family because of her “thing.” Only as I got to know her better did she explain this “thing.” She had a deep, masculine voice that contrasted with her self-identified female gender. Uncomfortable with her breasts, which she saw as contributing to her troubling thoracic rib pain, she had tried several times to have them removed and was only successful once she was able to access a gender transition clinic. She was happy to find healthcare that would finally help. But once she refused to complete the transition through hormone therapy, the clinic discharged her from care. It felt like one more abandonment by the medical system – one more affirmation that she really did not fit into life. As a result of her life-limiting symptoms, Sam was chronically un or underemployed. She lived in subsidized housing and had to move several times to find a suitable shelter. Each time she moved, she was disrupted from a primary system of care. Eventually, with the primary care shortages, she could not find stable healthcare and found herself accessing emergency rooms for symptom relief. Soon, she had “drug seeker” added to her already complex medical record.

Sam had been an advocate of the assisted dying movement for many years, determined to apply as soon as it was made legal in Canada. She applied under Bill C-14 in 2017, in which her natural death had to be reasonably foreseeable, and was found ineligible. When Bill C-7 was passed in 2021, she tried again, and again she was deemed ineligible. However, after significant self-advocacy, she found two assessors who deemed her eligible under Track 2. She was not dying, but she had an incurable chronic illness, was in an advanced state of irreversible decline in capability, and was enduring intolerable suffering. Sam set the date and time for her death in keeping with meaningful personal events.

It was at this time that I first met Sam. I am a long-time palliative care researcher who came reluctantly to medical assistance in dying (MAID) research. The first person who told me I need to be involved in the MAID space got some rendition of when a hot place freezes over. I knew it was likely to be a bitter and polarized space in which rhetoric would trump reality. But I also knew that it was going to fundamentally change palliative practice, so in 2017, shortly after legalization, I began my research journey. Nothing had prepared me for the emotional and moral disruption of listening to the stories of those touched by MAID, stories of suffering, turmoil, resistance, courage, meaning, and commitment. But Sam in particular moved my heart.

I was deeply saddened by the iatrogenic harm that Sam had experienced in trying to get help for her condition. Her impression of healthcare contrasted starkly with the idyllic world she painted of the assisted dying system. She spoke eloquently of an assisted dying system that reflected what we think of as ideal palliative care – warm acceptance, compassionate presence, belief in, and attention to, symptoms – a warm cloak over the cruelties of life. I was struck by the irony of her perceptions of a compassionate MAID system alongside a dispassionate healthcare system.

I was also troubled by Sam’s aloneness as she waited for death. She had chosen not to tell the majority of her family because she was concerned that they would bring too much conflict and emotion into what she wanted to be a peaceful and ceremonial death. There may be no people within the healthcare system assigned to support applicants like Sam as they wait the required 90 days for their MAID provision, unless they have someone who has decided to go above and beyond to keep them connected even as they wait for their death. But then, such an approach by healthcare providers might be frowned upon as being too supportive of the MAID death, and hence, subtly coercive.

As Sam prepared for death, a long-awaited opportunity to have a diagnostic test became available, and she decided to have the test. It wouldn’t change her mind, but perhaps it would finally provide concrete evidence of some pathology to explain her symptoms. But she didn’t tell the doctor who reported the results to her that she was awaiting MAID. When she tried to introduce the subject with the doctor, she was rapidly dismissed as not being an appropriate candidate for MAID. This had happened to her a lot. She would broach the subject carefully and indirectly before disclosing what she planned to healthcare providers. And most often, that initial response from healthcare providers was so negative that she kept her secret. And so, she went forward alone except for two close confidants.

I wanted Sam to choose life. I kept wondering if there was anything that would make her want to live. I saw a beautiful and reflective woman with so much to give, but she felt she was a burden on the universe, taking resources better reserved for the next generation. I saw someone who had taken the time and energy to think through the state of the world, a world she experienced as meaningless and lonely. I am afraid of death. She saw death as a warm embrace for which she had waited far too long.

Sam spent her final day doing all the things she loved: eating lobster, being at the beach, and visiting with loved ones. But those loved ones told us that her last night was filled with pain – a reminder for them of why she was choosing this path. A wonder for me about whether she was ready to die. Did she really welcome death? Or was her pain a manifestation of her only two difficult options: to continue on with a life of suffering or an early death. I will never know.

In 2023, the most recent year for which we have national data, Track 2 MAID accounted for 4.1% of all MAID deaths or 622 persons. ¹ The most common conditions experienced by applicants that led to a request for Track 2 MAID were neurological and other which included frailty and chronic pain. ¹ MAID assessors tell us that there are common complexities that characterize Track 2 applicants: unclear medical diagnosis that cannot be confirmed through bloodwork or tests; younger age; complicated psychosocial history; long medical history with multiple specialist involvement; co-morbid psychiatric conditions; and extenuating factors related to the social determinants of health as a result of their long illness (e.g., poverty or marginally housed). ² As one assessor said to me, “these applicants are the most complex of the complex that you will care for in healthcare.” If that is the case, what constitutes a compassionate response from those of us in palliative care?

We must start thinking differently about what constitutes a life-limiting illness in palliative care. In the context of Track 2 MAID, we are now confronted with a new idea of dying as a result of an illness’ impact on quality of life not length of life. I am thinking about the irony of this. In palliative care, we have struggled with providing support because people don’t want the label of being a “palliative” patient. We now have a different problem, a population choosing to die and welcoming a palliative approach to care. But we have difficulty finding systems of care to provide that approach because, by definition, they are not dying in the way that we would think about dying in palliative care. How are we going to design palliative systems for this population?

Can we create a system within palliative care that provides a final line of support where the goal is to recover quality and length of life when someone is at the brink of choosing death? Can we be prepared to take some risks to relieve their suffering, adopting the same double effect principle from ethics that guides our care when someone is dying? We have many instances in our data from assessors and from national data, where providing relief of their suffering has postponed or interrupted the wish for death in a Track 2 applicant. In 2023, 496 persons withdrew their request for MAID, of which 17.7% of those were designated Track 2. One hundred and forty persons (both Track 1 and 2) withdrew their MAID request because they accepted means to relieve their suffering. ¹

I have a dream for Sam and those experiencing similar suffering. From the moment that Sam entered her application for MAID, she would have been assigned an advocate to help her. That person would become knowledgeable about her as a whole person, not just as a patient consisting of symptoms and parts existing within a fractured healthcare system. Sam would have undergone initial assessment and then been transferred into a system of care for intensive support through and beyond her 90-day assessment period if necessary. During that time, she would have been a partner in, rather than a recipient of, care. Healthcare professionals who interacted with her would know of her intent to proceed to MAID so that they could accurately gauge treatment risks and benefits. Someone would have helped her sort through her need for stable housing and ensure that she knew of all the income supports that were available to her. They would have assisted her in her desire to make a meaningful contribution to life based upon what she had experienced and learned. And if at the end of it all she decided to go forward with MAID, then her advocate would go with her to provide compassionate presence.

I know this may seem an impossible dream, but aren’t “impossible” dreams really only visions of new horizons. And new horizons are the very stuff that drives innovation, including those within palliative care itself. Innovators have taken us from hospice care, to specialized palliative care, to a palliative approach to care, to a compassionate community approach to care, to a public health approach to palliative care. I am merely proposing one more step, a public health approach for a population, in choosing death over life that needs a compassionate cloak. How impossible is that?