This story is part of a partnership between MedPage Today and VICE News.
Jennifer Glass had no control over the lung cancer ravaging her body, but the 52-year-old knew how she wanted to die: at home in bed with her husband and their cat, quickly and painlessly.
Her death wasn't so quick and painless, however.
Glass had advocated for "aid in dying" legislation in California. The state's End of Life Options Act would have allowed her doctor to prescribe her medication that could put her to sleep and end her life within less than an hour, but the bill's progress stalled. Her husband, Harlan Seymour, told VICE News that her symptoms became unbearable as her lung cancer spread to her brain and caused headaches and seizures.
Glass died after several days of palliative sedation, meaning she was sedated and not given fluids or nutrition until she passed away. This practice is a legal alternative to aid in dying, but her husband said that it's not as peaceful as it sounds.
"She lasted six days," Seymour said. "She was in pain, I would say, for most of it. You could see the discomfort on her face."
"When she took her last breath those last few hours were pretty much exactly what she wanted," he added. "The previous days were not."
Glass awoke more than once. The first time, she was stirred from the heavy sedation by a sharp urge to go to the bathroom; the morphine severely limited her ability to urinate. She staggered to the toilet, but couldn't relieve herself. She woke up in a panic shortly after midnight a few days later, failing to recognize her sister, who was keeping watch over her.
This can sometimes happen to patients undergoing palliative sedation, but it's rare. The goal of palliative sedation is to control symptoms, not necessarily to keep patients completely unconscious, Dr. Kavitha Ramchandran, medical director of palliative care at the Stanford Cancer Institute, told VICE News.
"It was incredibly painful for the family to watch this painful six-day process, the life draining out of Jen, the loss of dignity," Seymour said.
He hopes that her fight for aid-in-dying legislation and the upsetting circumstances of her death will not be in vain.
Dying with Dignity
Aid in dying was once called "physician-assisted suicide," and has also been referred to as "the right to die" and "death with dignity." It is legal in four states — Montana, Oregon, Vermont, and Washington State — but not in California, where Glass lived.
Brittany Maynard, a 29-year-old newlywed with terminal brain cancer, had also lived in California before moving to Oregon in order to legally end her life last November. Videos of Maynard telling her story and urging states to allow aid in dying went viral. According to Barbara Combs Lee, president of the nonprofit organization Compassion and Choices, Maynard's testimony had a game-changing impact on the public's perception of end-of-life decisions.
"Because Brittany was so charismatic and compelling, her story was personal to everyone," Combs Lee told VICE News. "She had that effect on everyone who watched her video and followed her story. For all those people, all of the sudden an issue that was abstract became personal and concrete."
According to a May Gallup poll, 68 percent of Americans support aid in dying — up from 58 percent the year before.
More than 11 million people have watched Maynard's first YouTube video, which was posted last October. When her story took off, she worried that she was already too sick to make a difference, her husband, Dan Diaz, told VICE News. He's since advocated for aid in dying on her behalf.
The day Maynard chose to die, he recalled, she drank the medication surrounded by friends and family at home and fell asleep in about five minutes.
"The whole time, she could just look to people in the room and say, 'I love you. It's okay,' " he said. She died roughly a half hour later. "It was gentle. It's what she wanted."
Had the tumor killed her instead, she would have been blinded, paralyzed, and in terrible pain, Diaz added, calling the ordeal "torture."
Diaz met Glass when the California End of Life Options Act was introduced in January, almost three months after Maynard's death. He stood behind her as she delivered a speech.
"It was just very moving listening to her speak for four minutes," he said. "All of a sudden in my mind I felt myself thinking, 'I have a new best friend here' or something."
Diaz said he checked in on Glass regularly, spoke with her about what his wife went through, and visited Glass on the day that she died.
In May, the California Medical Association (CMA) abandoned its decades-long opposition to aid in dying, saying that such decisions should be left to individual patients and their doctors.
"As physicians, we want to provide the best care possible for our patients," CMA President Dr. Luther Cobb said in a statement at the time. "However, despite the remarkable medical breakthroughs we've made and the world-class hospice or palliative care we can provide, it isn't always enough."
The bill stalled in the state legislature this summer, but Seymour, Diaz and Maynard's mother were on hand on Tuesday to announce a plan to reintroduce it in the hope of winning passage by the September 11 deadline for this legislative session.
A Controversial Topic
Oregon passed the first bill establishing aid in dying more than 20 years ago, but the movement has been slow to spread throughout the country. Aid in dying legislation is pending in 24 states and Washington, DC, according to Compassion and Choices.
Groups oppose it for religious reasons and because they fear it will be abused. A coalition called Californians Against Assisted Suicide includes disability groups that fear patients won't get disability services and could be coerced into assisted suicide, as well as mental health professionals who fear that distraught patients will be granted aid in dying instead of being referred to psychiatric or therapeutic caregivers.
A recent study in the Netherlands on assisted suicide and euthanasia — which Combs Lee says differs from aid in dying — found that patients sometimes requested death because they "were tired of living." These patients were also often denied such requests.
"People who ask for aid in dying don't have suicidal ideation," Combs Lee explained. "They're very, very thoughtful and life affirming. They're not turning away from life."
Even the phrase "aid in dying" has a complicated history. Calling it "physician-assisted suicide" originated out of a need to distinguish it from euthanasia, Combs Lee noted, which involves a physician administering a lethal drug instead of the patient self-administering. But that didn't sit well with patients and families who felt strongly against the idea of self-destruction.
At the press conference introducing the End of Life Options Act early this year, Glass said that her cancer was too advanced for surgery and described undergoing aggressive chemotherapy and radiation. She also took a daily chemotherapy pill, which had harsh side effects.
"I'm doing everything I can to extend my life," she remarked. "No one should have the right to prolong my death."
Behind her, Maynard's mother nodded.
Had Glass died of cancer, she would have likely succumbed by drowning in her own lung fluid, gasping for breath. A death like that terrified her.
"Every time I've had to go to the hospital, I'm just so cold," she said at the press conference. "My home is warm, and it's familiar. It's where we've become a family, and it's where I want to die."
She got that much, at least.
Follow Sydney Lupkin on Twitter: @slupkin