In Death, Maximizing Control and Minimizing Suffering

How would you prefer to die? And how can doctors make that a reality?

“If you ask anybody in this room, ‘How would you prefer to die?’ most people will say, ‘I would prefer to die in my sleep, not even aware that it’s happening.’” Dan Diaz had to pause. He was getting choked up then, speaking to a crowded room at a panel leading up to the Aspen Ideas Festival, about the life—and death—of his wife Brittany Maynard.

Maynard took her life on November 1, 2014, after moving to Oregon, one of the few states in the U.S. with an aid-in-dying law. She had glioblastoma multiforme, a brain tumor, which did not respond to surgery. In April 2014, doctors told Maynard she had six months to live.

“A friend of mine, his father had a glioblastoma, and he was tortured to death by it,” Diaz said. “So we were very aware, and she was very aware of what was coming to her.”

In Oregon, two doctors must independently confirm the six-month prognosis in order for a patient to receive lethal medication. The patient cannot have any underlying mental-health issues, and must request the drugs two times, with a 15-day waiting period in between.

“There are all these safeguards in place to protect the individual from coercion,” Diaz said.

Maynard took secobarbital, a sleeping drug, just at a much higher dose than would be given for insomnia.

“When I [asked] before, ‘How would you prefer to die if you had the choice?’, that’s what Brittany got. She was able to die peacefully in her sleep,” Diaz said. “My younger brother was there, and so were some of her friends. We all kind of looked at each other and said ‘If I live to be 100 I want that.’ We should all be so lucky.”

Maynard’s story brought the right-to-die movement back to the forefront in the U.S., with more than 20 states, as well as the District of Columbia, introducing right-to-die legislation after her death. Diaz now lobbies for the issue, keeping “the promise I made to Brittany that I would continue to fight for this right for the individual to be in control of their own dying process.”

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More broadly, Maynard’s story is a reminder that while death and suffering are often linked, they don’t always have to be.

Another rhetorical question asked at the panel was posed by BJ Miller, the executive director of the Zen Hospice Project and an assistant clinical professor of medicine at the University of California, San Francisco.

“Who here hasn’t suffered?” he asked. From the audience, nothing. “I’m still batting zero percent on that question,” he said. “No one has ever raised their hand.”

Miller works in palliative care, which he describes as “the multidisciplinary pursuit of quality of life and the mitigation of suffering.” He works with terminal patients, but not exclusively. Anyone who is suffering in some way is eligible for palliative care. Between 2000 and 2013, the number of hospitals that have palliative care teams increased by 165 percent, according to the Center to Advance Palliative Care.

Miller said the healthcare system traditionally “has revolved around diseases or body parts. You can be made to feel incidental, like you’re a vector for the disease. I don’t mean to vilify it, there’s a good reason for that. [But] it turns out people are important in this mix.” Palliative care involves art, humanities, philosophy, and design, all things intended to appeal to the senses, which Miller emphasized the importance of.

“If you have access to just one sense, you have the potential to feel connected to the people around you and to this planet,” he said. “If we really want to live until we die … this is a way to stay in touch until your very last breath.”

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The rise in interest in both the right-to-die movement and palliative care reflects a broader trend in people becoming more interested in their own deaths—preparing for them, planning for them. This interest comes at an apt time, since more Americans experienced pain and depression in the last year of their lives in 2010 than did in 1998.

Panel moderator Courtney Martin, a columnist for On Being, noted twin themes of control and suffering that permeated the talk, wide-ranging as it was. When it comes to death, it seems people have a desire to maximize the first and minimize the second.

This can be hard for doctors, who are taught to maximize another thing: life. Years lived, I mean. “Maximizing life” can also be measured in terms of experience, how much one lives and not how long. But when you’re taught from medical school on to beat back death at every opportunity, it can be difficult to let go.

Samuel Kargbo, the director of health systems, policy, planning, and information for Sierra Leone’s Ministry of Health and Sanitation, told a story about when he was a young doctor.

“[There was] this lady, about 80, who developed gangrene of the right foot,” he said. “I was so passionate to try to do something for her, preparing her for surgery and everything, but my then boss said ‘Why not just leave her to die?’ I felt within myself that this was not correct. I thought I should do everything for her to make her live.” But his boss told him that the woman was still at great risk of dying during surgery, that instead they should just make her comfortable.

“It was difficult for me at that time and still to this day I think probably if we had just risked it she might have lived,” Kargbo said. “But we just gave tender loving care, being there with them, giving painkillers, talking with the family and giving them support. The respect of the family, I still have it. We are still in communication. They like me simply because I was there for them.”

This reminded Diaz of a doctor he and his wife had encountered. “We had one physician who was telling us the size of the tumor and he was backing out of the room,” he said. “Brittany challenged him. She said, ‘You are my doctor right? He said, ‘Yes,’ and she said, ‘Well sit down.’”

But despite all these efforts being made to get patients and doctors more comfortable with death, it’s not easy. Even these three panelists, who deal with and talk about death regularly, got squirmy when Martin asked them what their hopes for their own death were.

“You go,” Kargbo said to Miller.

“Well I’m not gonna die,” he joked at first. Then he got serious and said, “As few regrets as possible.”