The uncounted dead: California doesn’t want to know who’s falling through the cracks of its assisted-death law

When Timothy Stock died from terminal liver cancer last July, his inability to access end-of-life care wasn’t considered worth including in the state’s first progress report about its new assisted death law. But Stock’s daughter hasn’t forgotten how her dad died—or that he was prevented his final wish.

“He was excited about the law,” said Elizabeth Carlsen, a Sacramento attorney who was caring for her father in San Diego when he died. “I ran up against a wall.”

Carlsen’s father died July 8, 2016, one month after the California End of Life Option Act took effect. Last week, the California Department of Public Health released its first official glimpse into how the law is performing. Between June 9 and December 31 of last year, 191 terminally ill men and women were granted prescriptions to end their lives, with 111 of the people—or 58 percent—ingesting the fatal medication.

Proponents of the law welcomed the figures as proof the state was achieving its goal of providing a compassionate doorway to those facing painful demises.

“The state’s data show that even during the early months of the law’s implementation, the law was working well and terminally ill Californians were able to take comfort in knowing that they had this option to peacefully end intolerable suffering,” Compassion & Choices California State Director Matt Whitaker said in a statement. “We continue to work to ensure that every terminally ill Californian has equal access to all end-of-life care options, including hospice, pain control, palliative care and medical aid in dying.”

But to an unknown number of adults whose illnesses have progressed to the point of no return, the act has provided little more than a mirage of hope.

According to the state, 258 people formally started the end-of-life process by making two verbal requests to their physicians at least 15 days apart. The fact that 191 people received prescriptions means 26 percent of patients didn’t complete the process for unknown reasons.

The department’s explanation for not tracking requests, delays and denials in care is the same for why it released only six months’ worth of data in its first “annual” report—this was all it’s statutorily required to do.

In an emailed statement, the state’s public health department said it would “continue to follow the requirements of the End of Life Option Act (EOLA) and any changes that may be required through legislation.”

In the meantime, public health officials, state lawmakers and the public have no way of knowing how many terminally ill Californians are falling through the cracks of the strictest assisted death law in the nation.

In the absence of data, there are anecdotes involving people like Stock and my mother, who died of multiple myeloma in October of last year after her request for end-of-life medication was denied by the first doctor who examined her. (Read “Killing Mom,” SN&R Feature Story, June 15, 2017.)

Stock was diagnosed with stage 4 liver cancer around August 2014, his daughter says. He relocated from Sacramento to San Diego to be with Carlsen and try experimental treatments through UC San Diego Medical. Early last year, Stock and his daughter learned the medical interventions had done all they could. Stock was terminal.

Around March of last year, Carlsen says, she and her father asked hospital representatives and hospice providers what they needed to do to take advantage of the end-of-life law when it took effect three months later. Stock was transitioning from medical treatment to palliative care, and there were questions about which entity had the jurisdiction to help him navigate his death—the hospital or his hospice provider. It would take a few days at a time to move one rung closer to a straight answer.

“It was a confusing time,” Carlsen remembered. “I actually considered putting him on a plane and sending him up here.”

But her dad was too weak to travel, and declining rapidly.

“He was very adamant that he wanted this option,” Carlsen reiterated. “In the meantime, there are so many crises going on. I mean, this person is terminally ill.”

When the answer finally came—that neither the public hospital nor the faith-based hospice care provider would participate—Carlsen says she gave up.

“My dad was really afraid he was going to be in pain,” Carlsen said. “He didn’t know if he was going to use it, but he wanted the option of having it.”

That’s not uncommon.

According to the state, 21 people who received end-of-life prescriptions died without taking them, while 59 had undetermined outcomes at the time of the reporting.

In a follow-up interview, Whitaker said that longstanding efforts to make the medical community more comfortable with the inevitable reality of death, from groups like the Robert Wood Johnson Foundation, “just haven’t been as effective as everyone hoped they would be.”

In the absence of a top-down paradigm shift, Whitaker says, his group is urging patients and their families to initiate those conversations themselves. Whitaker draws a comparison to how newborns used to be delivered in antiseptic hospital settings that kept fathers outside. It was patients, not doctors, who pushed for a more holistic approach.

“I think that’s happening here,” Whitaker added.

But it takes time, he acknowledges. And that’s the one thing terminal patients don’t have much of.

Carlsen’s dad held on for several more weeks after he was denied an assisted death. By the time he fell into a three-day coma last summer, Carlsen says it was just she and her dad, winging it together. The hospice workers, great as they were, didn’t play as large a role as she expected.

“It was me on my own taking care of my dad at the end,” Carlsen said. “You’re mixing the drugs every two hours and shooting it into his mouth.

“I don’t know what kind of pain he was in at the end.”

Carlsen is hoping the law will become easier to navigate for people in her dad’s situation. For now, she’s content with sharing his story, even if the state of California isn’t interested in recording it.

“He was a fantastic guy,” Carlsen said, then laughed softly. “He was a tough patient. He was a difficult patient. Yeah, I miss him.”