A San Diego woman's harrowing account of her aunt's death last month under California's new physician aid-in-dying law suggests that healthcare providers still have a long way to go to make the process work smoothly for terminally ill patients.
In a Los Angeles Times op-ed, Linda Van Zandt described her struggle to find two physicians to help her aunt, who was dying of ALS, obtain a lethal prescription allowed under the state's End of Life Option Act, which took effect June 9.
Under the legislation passed last year, California joined four other states—Oregon, Washington, Montana, and Vermont—that allow physician-assisted suicide. Coloradans will vote on a ballot initiative in November on whether to make theirs the sixth state to allow this practice.
But California's experience will receive particular scrutiny because of the state's enormous size and diversity and its history as a national trendsetter. In those other states, a small percentage of terminally ill patients have asked doctors for a lethal prescription, and an even smaller percentage followed through to end their lives. If California patients use the law at that same rate as Oregonians use it, the annual death total would be around 850.
Compassion & Choices, a not-for-profit group that advocates for end-of-life choices and supports the law, has heard of California doctors writing 25 lethal prescriptions so far. The actual number is probably double or triple that, said Kat West, the group's national director of policy and programs.
Van Zandt's aunt, a 69-year-old San Diego resident whom she declined to name, had declared her desire to take advantage of the law on the day it became effective. She was rapidly losing her ability to swallow and feared she soon would be unable to qualify for aid in dying under the law, which requires patients to be conscious and mentally competent and take the medicine on their own.
But her two neurologists at Kaiser Permanente did not return Van Zandt's calls for help, Van Zandt said in an interview. Kaiser Permanente did not return calls for comment by deadline for this article.
Then Van Zandt tried fruitlessly for days to find another doctor to start the process. The law requires two physicians to independently determine that requesting adult patients have six months or less to live, are making an informed, voluntary decision, and are mentally competent.
A hospice physician finally agreed to start the process, and Van Zandt eventually was able to find a second doctor to certify her aunt for aid in dying and prescribe the barbiturate Seconal. But then the woman had to wait a set number of days to confirm her desire to proceed with the lethal prescription. “We were in a serious race against her symptoms,” Van Zandt wrote.
The Seconal prescription cost $3,000 and was not covered by the woman's Kaiser Permanente Medicare Advantage plan. Compassion & Choices says most major private insurers including Kaiser will cover the lethal prescription, but federal law bars Medicare from covering it.
On July 7, family and friends gathered at Van Zandt's house to be there when she took the lethal medication. But they had to wait hours until an Uber driver delivered it from the pharmacy. He had picked up several riders along the way, delaying the delivery, Van Zandt said.
The woman swallowed a bitter cup of water, sugar syrup, and powdered Seconal in less than five minutes and quickly become unconscious and died. “It didn't exactly match the serene scenario I'd pictured—with appropriate music, Bible readings, and meaningful conversation,” Van Zandt wrote. “My aunt was surrounded with love, but the day was fraught and frightening.”
Compassion & Choices' West said Van Zandt's story “makes me very sad and angry, mostly because the patient's own doctor and healthcare team abandoned her during her time of great need.” She expects such unfortunate stories to become less common as physician aid in dying “becomes normalized into the standard of medical care.”
Unlike it previously did in Oregon and Washington, C&C is not referring patients to a confidential referral list of participating doctors. But it does offer a digital tool to search for participating healthcare facilities, as well as doctor-to-doctor and pharmacist-to-pharmacist phone consultation hotlines.
It may be tough for California patients to find participating physicians for a while to come, particularly in more rural areas. Dr. Terrell VanAken, medical director for hospice and palliative care at NorthBay Health Care in Fairfield, said he's one of only three doctors out of 250 in his organization who has agreed so far to help terminally ill patients die under the law.
“I'm not surprised that patient had a hard time finding a participating doctor,” he said. That, he added, creates particular stress for patients with ALS and other conditions whose disease process advances rapidly.
Physicians “are not coming out of the woodwork to participate,” he said. “It's a lot like hospice. They don't want to mess with Schedule 2 narcotics and symptom management. But they should obviously answer the phone when their patient calls.”
Many California healthcare providers are still in the process of deciding whether to participate in the law and in setting policies. In contrast, some larger organizations such as Kaiser Permanente and Sutter Health quickly adopted proactive policies and procedures to help their patients use the law, though individual doctors at those organizations have the choice under the law whether to participate or not. Huntington Hospital initially opted out of participating but recently announced it would participate after after coming under community pressure to do so.
One unexpected factor that could make access to aid in dying more difficult in California is a new model policy (PDF) issued by UCSF Medical Center that Dr. VanAken said is being widely followed by other healthcare organizations—though not by other University of California health systems. In a controversial provision, the model policy says terminally ill patients who request aid in dying must see a psychologist or psychiatrist to determine whether they are mentally competent.
The law itself leaves that determination to the two physicians who independently determine whether the patient qualifies for assistance. Doctors are only required to refer the patient for a mental health evaluation if they have doubts about the patient's mental competence.
VanAken said that will cause problems for patients because California has a shortage of psychologists and psychiatrists, and it will be hard for very sick people to get timely appointments and travel for these evaluations. He's recommending that his organization let its doctors determine whether patients need a mental health evaluation. In Oregon and Washington, only a small percentage of patients who received lethal prescriptions have received such evaluations.
Dr. Lee Ralph, president of the California Academy of Family Physicians, who supports the law, said family physicians are qualified to decide for themselves whether patients are mentally competent to receive aid in dying or whether they need to be referred for an evaluation.
But he's still making up his own mind about whether he will write a lethal prescription for terminally ill patients who request help in ending their lives. He notes that the law is complicated and makes doctors and patients fill out lots of forms. “I haven't had any patients request that option yet,” he said. “I'm trying to educate myself more fully.”