Dr. Stefanie Green worked as a family physician in British Columbia, focusing on maternal and newborn care. In 2016, when medical assistance in dying (MAID) became legal in Canada, she focused on what she saw as another important aspect of care, accompanying people in their last wishes.
Her book “This Is Assisted Dying” recounts her first year of providing such care, in a still evolving legal and medical context. In one excerpt, she tells the story of trying to help Suzanne, who had metastatic cancer, and Nevin, whose exact condition was undiagnosed but who was in severe pain and physically declining.
It was during this permanent agitation that I was introduced to Suzanne. Suzanne’s diagnosis was clear; she had an aggressive form of breast cancer and, at 62, was told she had less than two years to live. It would have been devastating for anyone, and it was all the more infuriating for the once-active triathlete who no longer had the energy to walk to the end of her block.
Confined to her home with constant fatigue and pain, limited to procrastinating only when necessary, she had tried chemotherapy and radiotherapy but discontinued both due to intolerable side effects. She knew that if she could endure these treatments, she could extend her life by several years, but she was unwilling to compromise.
Suzanne came to the WMA and hoped to proceed in a few weeks to avoid living by dying. Her oncologist described the aggressive nature of her diagnosis and wrote a letter explaining her limited prognosis. The palliative care physician was frustrated with Suzanne’s reluctance to use certain medications for pain control, but accepted that Suzanne had the right to do so and to live with the uncomfortable consequences.
No one expressed concern about Suzanne’s ability to make her own health care decisions, and I found no evidence of a mental health condition. I thought Suzanne probably met the criteria. I was preparing to offer him an assisted death, but I wasn’t 100% sure about the acceptable limits of “reasonably foreseeable,” so I sought other opinions.
“Oh, I think her death is reasonably foreseeable,” said an academic, “and I believe she’s in pain. I’m just not sure she’s in a state of advanced decline yet. ‘What?’ I was puzzled.
“Well, it’s not well defined in the law, and you said she was still hanging around the house,” he continued. “I think it’s the intention of the law to help people who are dying, not to reduce the suffering of those who are living.”
I needed a moment to understand the implications of this statement. It was the exact opposite of what I thought the Supreme Court had intended.
“Well, an advanced state of declining function usually can’t be defined,” I began, “because it’s so individual, and isn’t it a clinical decision?” Are you suggesting that maybe I should wait until she’s in a worse state of decline, until she functions less, suffers more, basically “matured more”?
“She is already unable to leave her house. Isn’t the purpose of this law to allow people to decide for themselves when enough is enough? Are you suggesting that the law might require me to wait until she is bedridden or in more pain? Seems a little cruel to me.
Nevin was dying, but I wasn’t sure what. Suzanne was dying, but maybe not fast enough, and she was not yet as bad as some thought she should be to meet the rules and regulations.
My role was to provide the best clinical care. The role of lawyers in advising clinicians, I believed, was to reduce the likelihood of any (successful) prosecution. The administrators were supposed to ensure respect for the process while simultaneously facilitating access within a regional structure, and academics, it seemed, had material for endless debate.
Everyone had an opinion, none of us had the sole right to determine how to move forward, but I would be the one held accountable for any action taken.
One beautiful sunny morning in the middle of all this stress I decided to let off steam. I cleared a few hours out of my schedule and took my kayak to paddle near the beach near our house.
As soon as I left the shore, I was in a different world. There were birds everywhere, flocks of seagulls, flocks of geese, eagles overhead and herons on the rocks. Despite the beautiful setting, I couldn’t help but think of Nevin’s case.
On the water, I realized that ultimately it’s about limits: who determines them, who defines them and who, if need be, can test them.
Pop culture and the media have reinforced several stereotypical clinicians: the nerdy generalist who knows and does a bit of everything and often goes above and beyond (think “Marcus Welby, MD”); the aberrant macho “cowboy” (often a surgeon) who takes risks and wins big or goes home (think “ER” or “Grey’s Anatomy” characters); the passionate, mission-driven activist who will defy or even break the law to help a patient and prove a point. (Think Dr. Jack Kevorkian or Dr. Henry Morgentaler.)
I was none of those. I didn’t want, didn’t love and didn’t need to break any laws. We could argue about whether the fence posts were hammered in the right place or not, but the lines had been drawn. Follow the rules and MAiD was legal, do it wrong and it wasn’t.
Throughout my career, I have always wanted to provide compassionate, patient-centered, high-quality care, but always within the law, whether in women’s health, patient care, newborns or an end-of-life environment. My enigma was bigger than Nevin, or Suzanne, or me. MAiD was new, there were some legitimate questions, and I may have thought I had the answers, but there were others I respected who had important and differing opinions.
When I reached a protected bay, I rowed ashore, landed my kayak on a rocky beach, and pulled my cell phone out of the waterproof bag. I couldn’t go any further until I emailed some thoughts to several of my trusted sounding boards. We had a vigorous back and forth but no new clarity emerged.
I called and sympathized with Nevin’s family doctor, then tried to explain the lack of consensus to (Nevin’s partner) Robert before rowing, hard, home.
That morning, I discovered that in the face of lingering uncertainty, I didn’t have the courage to risk offering Nevin an assisted death. Making these good decisions meant being able to help people who were “suffering intolerably”, as the criteria clearly demanded. Getting it wrong looked very different. My practice, my family life and my personal freedom would be in danger.
Meanwhile, Nevin’s closest supporters remained locked in disagreement. Robert kept trying to help her stay home; (younger brother) Albie begged him to go to the hospital. Nevin was still worried that the palliative care team would block his access to an assisted death, but in the end he was even more worried that he might choke to death in the middle of the night, so he reluctantly agreed to be admitted to the hospital. .
At first I thought it was for the best, but Nevin’s fears came true. Upon arrival, the doctor increased Nevin’s painkillers, and Nevin became so sleepy that he lost the ability to make his own decisions. The doctor declared him incapable of consenting to MAID and assumed Nevin’s end-of-life care. Although I’m certain that this decision was executed with the best of intentions, Robert called me several times in tears, reminding me that this was exactly what Nevin had feared.
Robert pleaded with the doctor to reduce the painkillers so Nevin could direct his own care, but the doctor flatly refused, citing that it would be cruel to do so. When I suggested the family physician consider intervening, his response was understandable but heartbreaking.
“There’s only one palliative care specialist in town,” he told me. “I cannot break with his recommendations. I have to work with this specialist in the future, and this kind of disagreement could be catastrophic for future patient care.
Politics, unclear law and fear all played a role.
That same week, I came back to visit Suzanne. I tried to explain that it wasn’t that she wasn’t eligible, only that she wasn’t quite eligible yet. She was kind in her understanding but told me she would find a way to deal with it herself. I urged her to stay in touch, to let me know when things got worse. She thanked me for my time and my work in general. She said it was important and told me I was brave to do it.
I didn’t feel brave. I felt selfish putting my own worries ahead of his and Nevin’s. But the reality is that not everyone is eligible for an assisted death, and safeguards are in place for a reason.
Just because I want to help doesn’t mean I have to, and just because I can help someone doesn’t mean I have to. There are laws, there are standards of practice, there are clinical opinions, and there are personal boundaries. I had to be respectful of all those boundaries and both clear and comfortable with my own level of involvement.
Shortly after, I heard that Suzanne had asked for a second opinion. Another MAID provider thought Suzanne was eligible. A third clinician agreed. In the end, Suzanne got her wish and had an assisted death. No one complained and no one was sued.
Suzanne’s sister, Nancy, called me to let me know when it was over. She didn’t know if the other clinicians had spoken with administrators or brought in lawyers, and she didn’t care. She just wanted to tell me how relieved she was that Suzanne didn’t have to kill herself. She was convinced that she would have tried to do so.
A few days later, I learned that Nevin had passed away in hospital, under sedation and on hospice care. I was glad he was no longer in pain.
I will never know if I made the right legal choice by not moving forward in these two circumstances, but I would have liked to have had the courage to continue with Suzanne. I wish I had been brave enough to get on that plane and help Nevin home.
This was how he had hoped to die. It was what he considered worthy. It was what he had asked for when he was still quite capable of it.
In the end, I know he was scared: scared of a disease we couldn’t understand, let alone cure; scared enough to give in and go to the hospital, to give up on his end-of-life goals. Overwhelmed by the inevitable, he had asked me for help, and to this day I can’t help but think I let him down.
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