Terminally ill patients can now legally choose to end their lives in California, but family members say taking advantage of the new policy is easier said than done.
California’s End of Life Option Act, authored by Democratic Assemblymember Susan Talamantes Eggman, has been in effect since June 2016. Eggman recently invited family members whose loved ones had tried to use the new law to testify at a hearing.
Kelly Davis of San Diego spoke about helping her sister Betsy Davis exercise her right to die. She said it mostly worked out, but they hit a roadblock acquiring the lethal dose of medication her sister’s doctor had prescribed.
“We called numerous pharmacies with no success — nobody had it, or they weren’t willing to provide the quantity Betsy needed,” Kelly Davis said. “One pharmacy said they would draw the attention of the FDA if they were to provide amount of Seconal she needed.”
Instead, Betsy Davis died peacefully after drinking a mix of medications that her sister described as a “toxic sludge.”
Other families had different problems. They couldn’t find doctors to prescribe the medication, or staff treating their loved ones in care facilities wouldn’t talk about the law at all.
The strict requirements sometimes block patients from being able to choose death. Under the law, patients must have six months or less to live, be of sound mind, and be able to ask for the medication themselves and be able to administer it without help. Doctors aren’t required to counsel patients about the option or write prescriptions for aid-in-dying drugs.
The most recent report from the state health department shows that 258 people started the voluntary end-of-life option process in 2016, 191 of them received prescriptions, and more than half chose to ingest the lethal medication. Most of them were white adults over age 60.
Barbara Koenig, head of bioethics at the UC San Francisco, said bureaucracy can sometimes keep patients from exercising choice at life’s end. It’s a timing problem. If their disease progresses before they’re able to use the law, they may become too debilitated to qualify.
“There can be a complete mismatch between whether a patient thinks they’ve made a request, as opposed to what the health care system has heard or what a health care system is prepared to hear,” she said.
MK Nelson, director of spiritual care at Mission Hospice and Home Care in San Mateo, said she’s been training her staff to talk to patients about physician-assisted death, but it’s still uncomfortable for some.
“There’s a tension for hospice providers, I think, between everyday end-of-life care that we’re used to giving, and End of Life Option Act care,” she said. “What I encourage everyone to do is hold that tension.
“It’s never going to be black and white. It’s grey.”
Patient advocacy group Compassion & Choices says more than 500 California medical facilities — and 84 percent of secular health systems — are supportive of patients who choose to use the law. The group offers a directory to help people in need of aid-in-dying drugs.
But many groups, especially those representing religiously affiliated providers, still oppose what they call assisted suicide — either on moral grounds or out of concern that patients will be coerced.
Aid-in-dying advocates say they don’t expect to see changes to the law, but they do hope to see more conversation between patients and providers about how it’s working.