> Zed Book Club / Dr. Jean Marmoreo Explores the Importance of Medically Assisted Death From the Patient’s Perspective in ‘The Last Doctor’
Dr. Jean Marmoreo says each of the seven patients featured in her book taught her a lesson about Medically Assisted Death in the early days of its legalization. Photo: Courtesy of Bob Ramsay
Dr. Jean Marmoreo Explores the Importance of Medically Assisted Death From the Patient’s Perspective in ‘The Last Doctor’
In a Q&A, Dr. Jean Marmoreo talks about the patient who inspired her to write about medically assisted death and the importance of debunking common misconceptions about the practice. / BY Kim Hughes / October 14th, 2022
Doctors helping terminally ill patients die has been legal in Canada for less than a decade. But the demand for what’s known officially as medical assistance in dying (MAID) is steadily growing. In lockstep have come memoirs from those doing the work, giving a potentially fraught subject a human face and thoughtful backstory.
In The Last Doctor: Lessons in Living from the Front Lines of Medical Assistance in Dying, out now, long-time Toronto-based family physician and MAID provider Dr. Jean Marmoreo makes it clear that those electing to end their lives with a clinician’s help are empowered and experiencing a death of “autonomy and dignity” rather than suffering an intractable slide into pain, disability, and dependence.
Co-written by Marmoreo with journalist and longtime Zoomer contributor Johanna Schneller, The Last Doctor is the second book about medically assisted dying in Canada to hit shelves this year, after Dr. Stefanie Green’s This Is Assisted Dying: A Doctor’s Story of Empowering Patients at the End of Life.
As they tell it, both Green and Marmoreo were committed to offering the procedure from the beginning — technically February 6, 2015 — when the Supreme Court of Canada ruled in a landmark case that prohibiting a very sick individual from requesting an assisted death was contrary to the Charter of Rights.
The law kicked in a year later and has since been updated to include “those whose natural death isn’t yet reasonably foreseeable,” allowing, for example, younger people facing lifelong degenerative diseases access to MAID, as well as permitting a “waiver of final consent” for those on track to suffer grievous cognitive impairment, such as Alzheimer’s.
Since then, according to the Third Federal Annual Report on Medical Assistance in Dying recently issued by Health Canada, some 31,664 individuals have died this way, at an average age of 76.3. The report adds that in 2021 alone, there were 10,064 MAID deaths — officially referred to as “provisions” — accounting for 3.3 per cent of all deaths nationwide. That number represents a growth rate of 32.4 per cent over 2020 with all provinces experiencing year-over-year growth, according to the report.
These numbers are no surprise to Marmoreo who, like Green — the latter the co-founder and current president of the Canadian Association of MAID Assessors and Providers (CAMAP), of which Marmoreo is a member — sees agency over one’s death as a fundamental aspect of quality of life. As Marmoreo writes, her obligation to provide provisions to those meeting eligibility criteria for MAID is obvious.
“My ideal was cradle-to-grave care: to begin with a patient in young adulthood and stay with them until the end. My younger patients often said, ‘You cannot retire before I die!’ and my response was always, ‘I’ll be dead before you, never fear.’
“But there were many patients for whom I could not provide the end-of-life care they sought. The gravely ill and those facing dementia didn’t want me to prolong their lives. They wanted me to ease them out. They didn’t want to linger in terrible pain, dependent on others for their most basic personal care. They didn’t want to deteriorate until they no longer recognized their own children.”
In her book, Marmoreo — 80 last August, and whose website accurately describes her as “doctor, writer, athlete, advocate, adventurer” — tells the story of seven actual patients with varying illnesses whose lives she helped to end with their consent and gratitude, as loved ones looked on. She spoke with Zoomer about the book, and what, if anything, the fallout from COVID-19 has brought to the discussion about end-of-life care.
Kim Hughes: Had you always intended to write a book about your MAID work?
Jean Marmoreo: Never was it in my mind. But even though I hadn’t planned to write a book, as a clinician I already had very detailed notes. My patient Yolanda (described as “only forty-five, but sick with a rare lung disease for thirty years”), who is threaded through the book, had a vital story of her own and could help people understand what MAID should be and what it entailed. She was kind of the driver of the book. I put (co-author) Johanna onto Yolanda because I also wanted to tell this story but because I was her physician, issues of confidentiality prevented me from telling it. So, Johanna made Yolanda’s story public. That was the genesis of the book.
KH: So, the patients presented in this book are real people, not composites?
JM: There are no composites except for the very end, the last two chapters, I used pseudonyms. But when we sat down to select the patients and came up with these seven stories, it was because each of those patients had lessons for me. And that was because most of these provisions happened in the early days of MAID when we were scrambling to figure out how to do this in a consistent, reasonable manner. And not just me but all the providers across Canada who were working out how the legislation should best be applied. Even though it was a federal decision, each province directs its own health care service. Every province has a slightly different iteration of how the legislation is applied. We wanted to ensure that all standards were very high.
KH: In her book, Dr. Stefanie Green argues that the subject of death should be normalized, that people should discuss their wishes about their own death with family while they still can. Is that your goal too?
JM: Absolutely. These are conversations we should be having with extended family around the Christmas dining room table. Families rarely come together in times of joy, mostly at funerals when nobody wants to talk about this stuff. If you believe that life is a celebration, you should honour that by knowing it won’t go on forever. The ending should reflect the richness and goodness of life.
KH: Where does Canada sit in the hierarchy of countries offering medical assistance in dying? Are we at the top, or in the middle?
JM: The template we used in Canada was what the Benelux countries (Belgium, Netherlands, Luxembourg) had done. Their model came into effect around 2012 and we have sort of followed them along. A key difference is that, if you’re in Holland, 75 percent of provisions are done by family doctors working with their own patients. That was certainly the model I initially had in my head although that hasn’t been the case here. Instead, there are a select group of physicians and nurse practitioners across Canada — some 1,500 now I think — who are doing medical assistance in dying.
We are increasing at 30 percent per year; last year we were at about 30,000 (medically assisted deaths). From that perspective, there are not enough doctors across the country doing this work. My expectation is that we are heading towards four to five percent of deaths annually being assisted deaths. It does vary from province to province but a high percentage of people with cancer request assisted deaths because they know what’s coming and they don’t want to go there. They want autonomy and dignity.
KH: The pandemic exposed the woeful state of our country’s elder care. In that context, a very moving passage in your book says, ‘If the only reason I’m providing MAID is that it’s easier to die than it is to get decent, deserved help, then I risk being merely an expedient solution. I simply won’t be that.’ Will this book have an impact on how we care for our elders?
JM: Oh man, I hope so. The pandemic exposed terrible flaws in long-term care that we have been ignoring for 25 years. I mean, we saw it: those dying in the greatest numbers in the early days of COVID were those in long-term care. When you have to call in the military to clean up the mess, it’s a national shame. People at the end of their lives need the most hands-on care but they often cannot advocate for themselves, and don’t have the cognitive abilities to speak for themselves. And it hasn’t changed one bit [since the pandemic].
KH: Permit me to say, you’re an astonishingly vibrant 80.
JM: Yes, though I am definitely at the tail end of my life. Which makes me worry. Who is coming up behind us to do this work as we providers age? Who is going to step in and carry on when we are gone? We are finite beings as well. This work must be taken up by younger people.
KH: What’s the most important thing for people to know about your book?
JM: I had a conversation with a woman in Newfoundland recently who didn’t know this [kind of care] was available. I don’t fault her for not knowing but I do feel that we need to start at the beginning. We have only been doing this for six years. People must understand this is not a dial-a-death operation. People must meet extensive eligibility criteria, and it’s not easy to access an assisted death, although I can tell you candidly that we can turn it around in 24 hours if we have to.
That said, you have to open the conversation with people who are failing, to ask, ‘What gives you joy and comfort? What is tolerable?’ It’s amazing how much people are willing to endure rather than stopping to ask, ‘Is this what I want for myself?’ Health care is so driven to the next option of care, and people just take it. Then suddenly they have no quality of life. They are suffering through the cure rather than evaluating their quality of life. There are other options.
Those interested in this subject might also wish to explore the documentary Last Flight Home, which chronicles an America man’s journey through the end of life.