California’s aid-in-dying law helps one woman reclaim a ‘measure of control’
Elizabeth Wallner vividly remembers the moment when she knew there had to be a better way to die.
Diagnosed with stage IV colon cancer, Wallner was in the midst of brutal chemotherapy that made her violently sick to her stomach. As she was retching into the toilet, her son, then 16, sat on the bathroom floor, helpless to ease her pain.
“I just remember the look of absolute anguish on his face,” recalled Wallner, a single mom. “I knew then that I would never, ever put him through that again. That moment is seared into my mind.”
When her time comes, Wallner, a 52-year-old education consultant who also cares for her aging parents, wants to spare her family any more agonizing memories and instead take a lethal prescription, prescribed by her doctor.
Starting June 9, that option will be available for the first time in California.
The legislation, signed by Gov. Jerry Brown last October after years of contentious battles over end-of-life options, marks a new era for California patients and physicians. Under a strict set of protocols, terminally ill patients can request a prescription drug to end their lives early, similar to existing practices in Oregon, Vermont and Washington.
For patients such as Wallner, California’s aid-in-dying prescription provides “a sense of peace that I will have a small measure of control in how my life ends.”
For physicians, it’s uncharted territory, applauded by some, unwanted by others. Ahead of next month’s implementation, health care providers are scrambling to train and advise physicians, pharmacists and others in how to handle patient requests.
There’s no telling how many Californians might opt for a lethal prescription. It could be in the hundreds.
“We can’t say with any kind of certainty what the number is going to be, but I don’t think it would be outrageous to say there could be 1,000 people in California who would be getting a prescription in the next year,” said Matt Whitaker, California director of Compassion & Choices, a Denver-based nonprofit that advocates for end-of-life planning, including hospice and palliative care.
Whitaker, who also works with Oregon’s 18-year-old program, said his office has been getting numerous calls from California patients and health care providers with questions about how to implement the new law.
“There are going to be tens of thousands of conversations going around California, as people are talking with their doctors about this new option,” he said.
In all cases, the end-of-life option is voluntary for doctors and individuals.
The state of California is readying the required forms, which will be available online next month on the Medical Board of California’s website. Hospital systems such as Kaiser Permanente are training doctors, pharmacists and other health care professionals in how to assist patients who want a prescription.
“With every person who wishes to exercise their right, we will have a patient coordinator to guide the patient through every step,” said Kaiser spokeswoman Amy Thoma. In the case of physicians who choose not to participate, their patients can be referred to another doctor willing to prescribe, she said.
Other hospital systems, including Catholic-affiliated Dignity Health, are not participating in end-of-life options because the practice goes against their religious values.
“Though we do not participate in activities intended to hasten the end of life, we respect the personal nature of end-of-life decisions and make no obligation for patients to begin or continue life-sustaining treatment if it is not their wish to do so,” said a Dignity Health spokesman in an email.
California’s efforts to pass aid-in-dying legislation were hard-fought over more than a decade. Opponents – including Catholic organizations, advocates for the disabled and some doctors’ groups – successfully defeated previous bills, saying the practice amounts to “assisted suicide” and that plenty of options already exist for terminally ill patients to comfortably manage pain, including hospice and palliative care.
For years, the California Medical Association, representing more than 41,000 physician members, staunchly opposed allowing life-ending prescriptions. But last year, the CMA went neutral on SB 128, which was co-authored by state senators Lois Wolk, D-Davis, and Bill Monning, D-Carmel, saying it was a personal choice between patients and their doctors.
In January, the CMA issued a 15-page guideline for patients and physicians in response to numerous calls about the new law.
“As physicians, there are a lot of questions about requirements under the new law, required documentation and forms, requests for the drug, consulting physicians and so on,” said Dr. Steve Larson, CMA’s president, in a January statement. “There certainly will be areas that evolve ... like which drugs to prescribe, but this is a resource to help us all navigate the new landscape.”
The CMA declined further comment this week.
Under the state’s End of Life Option Act, terminally ill patients who want a life-ending prescription must be at least 18 years old and be given less than six months to live by their primary physician. They must make three requests: two orally, 15 days apart, and one written. In each case, the patient must be fully capable of making the request and taking the medication, without being coerced or helped by anyone.
The law does not specify what type of lethal drug should be prescribed. In Oregon, Whitaker said, doctors typically prescribe an oral barbiturate, such as Seconal. Patients are given 100 capsules, which must be individually opened and mixed with 4 to 6 ounces of water or applesauce.
Nobody wants to die. (But) I don’t want my children to see me suffer.
Placerville resident Kristy Allan, terminal colon cancer patient
Some physician groups that opposed the legislation say it’s not going to be an easy transition for many doctors.
“No one is taught in medical school how to kill someone. It’s not part of what we do,” said Dr. Daniel Mirda, president of the Association of Northern California Oncologists. “We deal every day with people asking for ways we can help them prevent death. To change the whole focus and hasten death is counter to our ethics and training as physicians.”
Now that assisted death has become California law, Mirda, a Napa oncologist, said he’ll approach it on a case-by-case basis with each patient. But he’s concerned about how the law will be implemented: What’s the right medication? How’s it going to work? How do you administer it? Is there a supportive environment (for the patient)? How do you help the family get through this?
“Most people are beginning to realize it’s a lot more complicated than just passing a law,” Mirda said. “There are a lot more questions to be answered.”
Wallner said her Sacramento doctors have already told her they don’t feel comfortable writing her a prescription, should she want one. But she believes one of her Kaiser surgeons would be willing to do so.
Another patient, Placerville resident Kristy Allan, is in hospice care for terminal colon cancer and said her oncologist has already agreed to write her a life-ending prescription. Allan, a retired elementary school secretary diagnosed in 2009, said she wants the prescription just in case her cancer progresses to an unpleasant point. She’s talked with her husband, adult children and hospice caregivers about her preference.
“It’s a very hard choice. Nobody wants to die,” the 63-year-old said on the phone, her voice breaking. But, “I don’t want my children to see me suffer. I don’t want them to see me shriveled and unrecognizable.” Knowing she can obtain a prescription, she said, is “absolutely” comforting.
In Oregon, during the 18 years since its assisted-death option became available, only 1,545 residents have obtained a prescription, according to a 2016 report by the Oregon Public Health Division. Of those, 991 people – 64 percent – died from ingesting their lethal dosage.
There is little predictability about the age, ethnicity or income of Californians who might seek life-ending medications. Oregon’s data since 1998 shows those who died from a lethal medication were overwhelmingly white and more than 48 percent were college-educated. About 77 percent had cancer. Most died at home, under hospice care. Their median age was 71.
‘The Brittany effect’
Aid-in-dying bills had repeatedly failed in California until a vivacious 29-year-old, Brittany Maynard, put a public face on a very private agony.
Maynard, a recently married Bay Area resident, was diagnosed in early 2014 with a ravaging brain tumor but vowed she wasn’t going to endure the agonizing end that can occur with her type of cancer. After surgery didn’t stop the cancer and doctors gave her six months to live, Maynard packed up and moved with her husband and two dogs to Oregon, in order to access life-ending prescriptions under that state’s Death with Dignity Act.
A few months later, at a friend’s wedding, she met a New York documentary videographer, who asked to film her story, interviewing Maynard, her husband and mother. Her face puffy from steroids, Maynard gave a calm but passionate plea in support of aid-in-dying legislation.
“I do not want to die. But I am dying. And I want to die on my own terms.” With her prescription bottle tucked in her purse, she told the camera: “I would not tell anyone else that he or she should choose death with dignity. My question is: Who has the right to tell me that I don’t deserve this choice?”
When the film was finished, Maynard contacted Compassion & Choices, which posted her video.
“Brittany thought it was a huge injustice that we had to leave our home and move to another state, just to have the option of a gentle passing,” said Dan Diaz, 44, who said his wife was determined to share her story.
In early October 2014, her online video immediately went viral, riveting the public globally and drawing 11.8 million views on YouTube. “The amount of attention was completely unexpected,” Diaz said. Almost overnight, she was inundated with media requests for interviews, appearing on the cover of People magazine, on major TV networks and in many newspapers.
For two weeks in mid-October, her husband recalls, she gave as many interviews as her deteriorating condition permitted. In her final weeks, Maynard’s seizures were increasing in severity and frequency, occurring unexpectedly and leaving her unable to speak. Her anti-pain medication was becoming ineffective, Diaz said, and she feared the onset of blindness, paralysis and other unwelcome symptoms as her brain tumor progressed.
Six months after obtaining her lethal prescription, Maynard decided it was time. On Nov. 1, 2014, just a few weeks shy of her 30th birthday, she posted a final message on Facebook. After breakfast and a walk with the couple’s two dogs, she spent time talking and sharing memories with her husband, mother, stepfather and three close friends, Diaz recalls. Later that afternoon, she consumed the medication. Her husband curled up beside her in their upstairs bedroom; her friends and family surrounded the bed. Within five minutes, she was asleep. In 30 minutes, her breathing had slowed to the point that she had, her husband says, the “gentle passing” she wanted.
We can’t say with any kind of certainty what the number is going to be, but I don’t think it would be outrageous to say there could be 1,000 people in California who would be getting a prescription in the next year.
Matt Whitaker, California director of Compassion & Choices
Barbara Coombs Lee, Compassion & Choices president, calls the impact of Maynard’s death “the Brittany effect.” In 2014, Coombs Lee said there were just four states (including California) that were actively considering assisted-death bills. In 2015, after Maynard’s compelling campaign caught the public’s attention, lawmakers in 25 states, including California, had initiated such bills.
Public opinion appears to have changed as well. Last May, a nationwide Gallup poll showed nearly seven in 10 Americans supported “physician-assisted suicide,” the highest level in more than a decade. Noting the apparent impact of Maynard’s story, Gallup found a significant uptick in end-of-life support among young adults, ages 18 to 34, whose approval of doctor-assisted suicide climbed 19 points, to 81 percent last year.
For Maynard’s still-grieving husband, June 9 marks a bittersweet recognition that her efforts were worth it.
Diaz, who gave up his food industry analytics job after his wife’s death, now works full time as a consultant to Compassion & Choices. In recent months he’s traveled to seven states, including New York, Colorado, Arizona and Massachusetts, sharing Maynard’s story and testifying in support of legislation similar to California’s.
Whether he’s talking to doctors, patients or lawmakers, Diaz emphasizes a singular message: that securing a life-ending prescription is not about dying. “The hope is that you don’t need to use the medication. ... Once you’ve secured that prescription, then you focus on living, for as long as you still have time.”
Eighteen months after Maynard’s death, Diaz lives in the couple’s Alamo home. He’s emotional when discussing his late wife but says he carries “a deep sense of pride in Brittany” for helping pass California’s aid-in-dying legislation.
On a recent morning in her sun-filled Oak Park bungalow, cancer patient Wallner banters easily with her 20-year-old son, Nathaniel, joking about roommates, road trips and family pets.
Nathaniel, a restaurant worker in Los Gatos, calls his mom “the most important person” in his life. More than anything, he wants his mom to live for decades. But, given what Wallner calls her “whack-a-mole” cancer that keeps recurring, the two are realists.
Having watched his mother over the last five years endure “an absurd amount of pain, I can only imagine how much worse it can get,” he said.
For Wallner, who’s had five major cancer surgeries, 18 rounds of chemotherapy and another surgery this week to have part of her liver removed, California’s new law is not about how to die, but how to live comfortably through to the end.
She has no idea whether she’ll ever need an end-of-life prescription. But the possibility is hugely comforting.
“The irony is that I may never use that law. But there’s a peace in knowing I have that option.”
California’s End of Life Option Act
What it is: Starting June 9, terminally ill Californians with less than six months to live can request a doctor’s prescription for medication to end their life. It’s similar to laws already in place in Oregon, Washington and Vermont.
How it works: Adults, 18 and older, must make three requests of their primary doctor for an aid-in-dying prescription: twice verbally, 15 days apart, and once in writing. They must be mentally and physically able to request the lethal medication and take it themselves, without anyone’s help or coercion. Doctors are not required to issue a prescription and cannot be held liable for refusing a patient’s request.
What they take: The law does not specify what medication can be prescribed. In Oregon, where end-of-life prescriptions have been available for nearly 20 years, most patients are given an oral barbiturate, such as Seconal. California physicians are advised to counsel patients on having someone present when the medication is ingested and not taking it in a public place. The new law also states that when citing the patient’s cause of death, doctors cannot list suicide.
More information: The Medical Board of California plans to post the required end-of-life forms online. The California Medical Association has issued guidelines for patients and physicians. Information is also available at CompassionAndChoices.org or its California hotline at 800-893-4548.