On June 9, 2016, physician aid-in-dying became legal in California.
The new “End Of Life Option Act” allows terminally ill people to hasten their deaths. Opinion polls have shown strong support for assisted dying over the last 30 years, but Catholic Church leaders and medical groups have beaten back many attempts to legalize aid-in-dying. They succeeded in defeating a 1992 ballot initiative and stalling bills pending in the State Legislature. Had it not been for Brittany Maynard, physician aid-in-dying might have remained illegal in California for the foreseeable future.
A video that went viral
Bay Area resident Brittany Maynard became the face of the assisted dying movement when she recorded a video that was widely viewed in October 2014, just 19 days before her death. Two years prior to her death, Maynard was a young newlywed, looking forward to starting a family. But a year after her marriage, she became very ill and was unable to sleep.
"The headaches Brittany was experiencing –– it was clear something was horribly wrong," says Dan Diaz, Maynard’s husband. They interrupted their vacation and rushed to emergency on New Year's Eve 2013. "They did a CT scan and that was the first time we saw the image of a brain tumor. So we learned that the tumor was very large and there was no cure,” Diaz says.
Maynard's doctors told her she had only six months left to live. Treatment options were limited and she decided to let the cancer run its course. During the first few months, she was well enough to complete everything on her wish list — visits to Yellowstone, Glacier Point in Alaska, Olympic National Park. But Dan Diaz says time was running out.
"We knew what was coming for her and she was already suffering pain that not even morphine could alleviate," he says. "The inability to sleep sometimes for days on end, the nausea, vomiting. The seizures were the things that terrified her the most."
But the final days and weeks were likely to be even more difficult. Diaz says he and Maynard spoke with friends, did online research and learned that she would probably go blind and become paralyzed as her tumor grew larger.
"Brittany simply said, 'I will not die that way. Why should I be forced to endure that dying process?'"
Maynard decided that ending her life was the best option to achieve a gentle and quick death, before her symptoms got worse. At that time, physician-assisted dying was illegal in California, but it was legal in Oregon. So the couple packed up their house and drove 600 miles to Portland. Maynard met all the requirements under Oregon's Death with Dignity law and she received the lethal medication.
On October 9, 2014, she released her first video with the help of Compassion and Choices, a non-profit dedicated to promoting medical aid-in-dying. In the video, she told her story about being forced to leave her home to seek physician aid-in-dying in Oregon.
"At the same time, People.com, People Magazine—they released that story about her on-line," says Diaz. "Within that week, 12 million views on YouTube and Brittany Maynard was all of a sudden everywhere. Brittany's story … it was the most clicked story that People.com ever had in their history."
Three weeks after the video was released, Maynard was feeling worse and continued having seizures. On November 2nd, 2014, she said good-bye to her family and friends and self-administered the lethal medication. Her husband and mother were by her side when she passed.
"Upon drinking that medication, in five minutes, Brittany fell asleep," says Diaz. "About 30 minutes later, as the medication is absorbed into her system, her breathing slowed and she passed away, very peacefully."
The impact of Brittany Maynard's video
The video and Maynard's death galvanized support for the assisted dying movement in California and around the country. Backers once again introduced the aid-in-dying bill in the California state legislature. This time, the bill passed and was signed into law by Governor Jerry Brown.
For Steve Heilig, ethicist with the San Francisco Medical Society, the new law was unexpected. Heilig had been lobbying for aid-in-dying legislation for the last 20 years.
"I think it was the next day ...I just started sobbing," Heilig says. "And I was shocked by myself. But I realized it was all about all this work and all these people through the years, and somehow this had paid off after so much time and so much frustration."
For years, opponents successfully blocked efforts to legalize assisted dying, raising concerns over the potential for abuse. The elderly could be coerced to end their lives by greedy relatives. Disabled and poor people might hasten their deaths because they couldn't afford good healthcare. Author Wesley Smith, a leading critic of the right-to-die movement, argues that the medical system has a great financial incentive for hastening the death of patients.
“When you consider our healthcare system with managed care, HMO’s, profits being made from cutting costs –– what could be cheaper than having an assisted suicide for a cancer patient, rather than treating them to the end of their lives?"
To address these concerns, safeguards were written into the new law. Patients must be terminally ill and mentally competent to qualify. They must make two verbal requests for aid-in-dying at least 15 days apart, as well as a request in writing. Patients must consult two physicians to confirm their terminal diagnosis. Finally, patients must self-administer the lethal medication. Heilig says the safeguards in the new law will provide vulnerable patients with adequate protection.
"These are the most scrutinized of all deaths," he says. "So it would be much easier not using this, if you really wanted to bump somebody off."
Access to aid-in-dying
Before physician-assisted dying became legal, many people at the end of their lives were quietly hastening their deaths behind closed doors. Dr. Lonny Shavelson witnessed the deaths of people ending their lives in secret during the AIDS epidemic. He called these deaths “dark bedroom suicides.”
"About 20 years ago, what I saw was horrible," says Shavelson. "Patients were taking the wrong medication at the wrong times and having bad outcomes."
He says patients often did not have the benefit of medical guidance to assist them.
"Bad outcomes included things like partial overdoses, where people would fall asleep for two days from an overdose of morphine that did not result in death, but resulted in brain damage. And they'd wake up two days later, sicker than they started and with even more suffering."
When physician-assisted dying became legal, Shavelson opened his new practice, Bay Area End Of Life Options. His is the only medical practice in California focused solely on the new law and assisting qualified patients.
"There was almost a call that I felt, which is, 'You've been thinking about this and advocating this for such a long time,'" says Shavelson. "It's almost like, 'Put up or shut up.' Make it work. Be careful. It has complicated implications."
Like abortion, assisted dying is unpopular among right-to-life and some religious groups. Shavelson's new medical practice could potentially be a lightning rod for controversy.
"I get hate mail quite regularly, and I get called ‘Dr. Death’ quite frequently," he says.
Within days after his new business opened, Shavelson received multiple requests for help around the state.
"Many, many patients, and I mean hundreds of patients, are interested in having an aid-in-dying medication as one option as their death approaches, and cannot find any physician who will cooperate with them or participate with them," he says.
All Catholic hospitals have opted out of participating for religious reasons. Many hospitals in the rural areas and the Central Valley are also opting out. But Shavelson is hopeful that as they become more familiar with the new law, more doctors, hospices, and hospitals will assist patients with their aid-in-dying requests.
"This is opening the conversation — the ability to ask for medication to end your life is saying to a doctor, 'If you don't take better care of me and provide a better death, I'm gonna kill myself,'" says Shavelson.
He says it is his hope and expectation that more doctors will become better informed and actively involved with end-of-life care.
"This is what we saw in Oregon for 18 years –– that there were increased conversations about good end-of-life care and not that many ... [prescriptions] written for aid-in-dying. I expect that's going to happen in California."
The expansion of physician-assisted dying to other states
Dan Diaz made a deathbed promise to his wife Brittany Maynard that he would work on making aid-in-dying legal. After her death, California became the fifth state in the country to legalize physician-assisted dying. And in the most recent election, Colorado residents voted to legalize medical aid-in-dying. Legislation is now pending in 23 other states and Washington D.C.. Diaz now works with the advocacy group Compassion and Choices. He's visited eight capitals and has shared Maynard's story with many lawmakers.
"I am immensely proud of my wife," says Diaz. "Her voice certainly did make a difference, an impact for the rest of us. People say, 'Well, can one voice really make a difference?' Well yeah — hers did."
JoAnn Mar's report is part of the End of Life Radio Project, supported by a grant from the Association of Health Care Journalists and The Commonwealth Fund.