BJ Miller was one of several speakers who advocated for right-to-die legislation during Spotlight Health at the 2015 Aspen Ideas Festival.
When California’s legislature passed the End-of-Life Option Act recently, it marked a major milestone in the journey of Dan Diaz, who has devoted himself to the right-to-die cause since his wife, Brittany Maynard, took her own life with physician-prescribed drugs in Oregon in November 2014. Diaz spoke about his and Maynard’s emotional journey and right-to-die efforts during a moving session at the 2015 Spotlight Health event in Aspen, CO.
The couple had been married a year and a half when a large brain tumor was found in Maynard in January 2014. She immediately had brain surgery, but the tumor grew anyway, and her doctors gave her six months to live. Maynard was also suffering from pain and seizures that couldn’t be controlled by medication, said Diaz, and although she knew the tumor would kill her, she was also facing the prospect of first going blind, losing her motor and cognitive functions, and becoming paralyzed.
These factors drove the couple’s decision to move away from their home, friends, and family in California to Oregon, where voters passed a death-with-dignity law in 1997. Maynard applied for and was granted a prescription for life-ending medication through a process that Diaz explained as being rigorous and full of safeguards.
His wife was fighting for two things, explained Diaz:
That only the individual can make this decision for themself, that it’s not up to a hospital or a politician or the head of some religious organization. And the second thing was that palliative care in the hospice system, in most cases, will keep a person comfortable at end of life, but in her case that wasn’t the reality. She knew she had to take control, hoping she wouldn’t have to use the medication. So it was an empowering thing that she could be the one in control of her dying process.
Maynard died using self-administered medication on November 1, 2014, ten months after her initial diagnosis. Her death was peaceful, said Diaz, who promised his wife that he would continue the fight across the nation for terminal patients to have control over their own deaths. Four US states have death-with-dignity laws, while a large handful of others are considering similar legislation, in large part due to Maynard and her family’s efforts through the nonprofit Compassion and Choices.
“If you ask anyone in this room, how would you prefer to die, most people would say they’d prefer to die in their sleep, not even aware that it’s happening,” said Diaz. “That’s what Brittany got.”
BJ Miller, executive director of the Zen Hospice Project in San Francisco, is an advocate of palliative care, which grew out of the hospice concept but is still an underdeveloped and “deeply misunderstood” field, he said.
Palliative care, Miller explained, “is the multidisciplinary pursuit of quality of life and mitigation of suffering.” It brings into health care things like the arts and humanities and other things that are traditionally not part of medicine, with the goal of shifting from a disease-centric model to a human-centered model of care, and a cultural shift in thinking about death.
Miller and Diaz both said that most people don’t think of death as part of life, and that there’s widespread discomfort and fear on the topic. Even the doctors treating Maynard were uncomfortable with her reality, said Diaz.
“We all have a beginning, middle, and end,” said Miller. “The beginning is birth, the middle is this crazy thing called life, and then there’s that end part, and that’s death. We need to stop being so afraid of that part, and to talk about it more.”
Panelist Samuel Kargbo, a director in Sierra Leone’s Ministry of Health and Aspen Institute New Voices Fellow, explained how a less fearful approach to death in Africa posed challenges in the fight against Ebola. Yet in most other cases, he said, it’s a more comforting, human-centered model than in the West.
“If we know a person is dying, it’s the tender loving care that matters most,” said Kargbo. “In Africa, you see the community around that person all of the time.”