A day on the death panel

Like many of my favorite stories, this one is about death.

It takes place in a fourth-floor hearing room in the state Capitol, where the floors beneath the embroidered green carpets creek under the accumulated weight of decades of lurching progress, and the ghosts of those who didn’t live long enough to see it.

My mother is one of those ghosts.

In October 2016, Elisabeth Hosseini became one of an unknown—and uncounted—number of terminal adults who was denied a pain-free, drug-induced death under the California End of Life Option Act.

Nearly 15 months after her lengthy and sometimes violent passage into the great beyond, the state Assembly has gathered more than a dozen health-care professionals, patient advocates and survivors of the departed to conduct a postmortem on California’s well-intentioned but overly strict law.

Because of the story I wrote last summer chronicling my mom’s attempts to battle both her cancer and a state-sanctioned bureaucracy (Read “Killing Mom,” Feature, June 15, 2017), I was invited to be one of the panelists.

There’s a saying policy makers sometimes hear as they set about the business of crafting laws that will affect millions of people: Don’t let the perfect be the enemy of the good. The California End of Life Act certainly isn’t perfect. For too many, the promise of a death with dignity and without pain remains out of reach. Worse yet, the people the law fails are not counted by California’s higher authorities.

I had come to this musty chamber to remind my elected representatives not to let false piety and political expediency get in the way of true humanity. I had come to speak to them about a ghost.

This hasn’t gotten any easier for Daniel Diaz.

His wife Brittany Maynard died on November 1, 2014, a couple weeks shy of her 30th birthday and 11 months after a brain cancer diagnosis sent her on an odyssey that shifted the national dialogue about dying in America.

It’s not that death-with-dignity laws didn’t exist before Maynard rose to prominence. (The states of Oregon, Washington and Vermont had adopted versions prior to 2014.) Neither was she the first nor even the most famous spokesperson for the cause. But Maynard was what the movement needed to escape the shadow of Dr. Jack Kevorkian, whose controversial exploits and eventual prison sentence made him a problematic mascot for what used to be called assisted suicide.

By being a terminal patient who was seeking a fatal prescription—and not a physician who would be prescribing it—Maynard gave the movement the first-person perspective it was lacking. Social media gave her message reach, but also afforded it an unmistakable intimacy: Brittany was speaking to us, and we couldn’t look away.

Years later, Diaz’s voice shakes as he recounts his wife’s legacy to the Assembly Committee on Accountability and Administrative Review. He’s given some version of this speech in 12 different state houses and at an unspecified number of palliative care conferences, he says, but it still takes a visible toll.

Maynard’s home state of California hadn’t yet legalized assisted death when her brain tumor became inoperable, Diaz recalled, so the couple drove 600 miles to Oregon to access its death-with-dignity law.

“The reason that Brittany spoke up was that she thought it was a huge injustice that we had to leave her home,” Diaz said, his voice catching with emotion. “She spoke up for people she would never meet—terminally ill individuals in her predicament, terminal individuals that maybe wouldn’t have the ability to travel to another state. … I marvel at her determination to make a difference even as she was navigating her own dying process at the time.”

Maynard’s story created enough groundswell for California and Colorado to join four other states and Washington, D.C., with aid-in-dying laws, often over the sustained opposition of religious institutions and medical associations fretting over liability.

Death-with-dignity as public policy is still a nascent movement, but these laws have helped chip away at a delusional, recoiling culture that treats dying as some sort of fringe medical elective.

That’s not how Betsy Davis faced her death.

Diagnosed in July 2013 with ALS, the San Diego artist was able to “assert control over the chaos and uncertainty of a terminal illness,” her sister Kelly testified January 24. Lying in a makeshift bed under a canopy on the side of a house in Ojai, Betsy worked down a “toxic sludge” of morphine, Pentobarbital and chloral hydrate, and fell asleep surrounded by family members and loved ones as the sun set, Kelly said. “She turned death into a reason to celebrate.”

Dying of late-stage multiple myeloma, Bob Stone emptied 90 capsules of secobarbital into his apple sauce and then climbed into bed, recalled ex-wife Roberta Stone, who snuggled up beside him. “His last words to me were, ’I can feel it already. it’s good.’ And then he died peacefully,” she said of the 69-year-old Silver Lake resident.

Jackie Minor’s family had a much more trying time obtaining aid-in-dying medication for her father, who endured the violent coughing and gasping fits of pulmonary fibrosis for nearly two years.

After finding a willing health-care provider using the nonprofit Compassion & Choices’ website, Minor said, the family yanked her father from his provider and enrolled him in Kaiser Permanente in Southern California, where he was able to finally end his life quietly, on a couch, surrounded by his wife and daughters.

I wish I could tell the committee something similar.

A couple days after her terminal diagnosis, Elisabeth was lying on the couch in her living room, convalescing to one of the crappy reality TV shows she loved watching, the kind that nourished my German mom’s attuned sense of Schadenfreude. She was getting sicker; there was no denying it. Nestled at her side, I mentioned that my girlfriend broke down crying on the phone the other day. It was a test balloon, to gauge whether Mom wanted to have that conversation.

“I don’t know if that helps or makes it harder when people are, you know, show that they’re upset about you,” I wagered hesitantly. “Does that make you feel better or is it harder?”

Mom’s eyes brightened.

“No, that’s a good thing,” she said resolutely. “Why should you not know that people love you and care? And that’s all part of life together. We laugh together, you cry together, you mourn together. … That’s all life.”

My mom’s life was always the most interesting one to me. As kids, she told my brother and I stories that most adults might consider, what’s the word, traumatizing to a developing mind—of real ghosts and benevolent witches, of serial killers who hid under hotel beds and the country aunt who ate her beloved pet goose. Mom was like that. This was life and life was hard; why pretend otherwise?

After she was diagnosed with multiple myeloma in 1994, Mom would sometimes nudge me to write about her relentless pursuit of a natural cure, which took her from a cultish farm house in Chadron, Neb., to a hyperberic heat chamber in Tijuana, Mexico, and back to her couch, watching her husband and sons grumble as they soaked her socks in raw egg yolk. But I waited too long for that story. And so I am left with this one:

Well before California’s end-of-life option, Elisabeth made sure her family and doctors knew of her intent to take agency over the last thing she would ever do in this life. When California implemented its law in July 2016, it was a great relief to her. It meant she didn’t have to consider leaving the adopted home where she met her husband, started her preschool and raised her family. When her oncologist said she had months left to live, Elisabeth’s first question was about obtaining an aid-in-dying prescription.

Yet there were obstacles. Initially, Kaiser Permanente and Snowline Hospice couldn’t decide whose responsibility it was to move things to the next phase. Then, it took more than a week to receive a form that could have been downloaded from the state’s website. More weeks passed as our patient coordinator struggled to find a Kaiser doctor willing to conduct the first of two necessary interviews. And more time to schedule a house call, as my mom was now too feeble to leave her bed.

By the time a doctor arrived to interview my mom, she could no longer answer his questions to the law’s standard. She didn’t proceed to the next round. A day later, Elisabeth Hosseini, 76, of Sacramento by way of Germany, died convulsing and choking on her own spit.

Even to the end, she fought with every ounce.

Neither Kaiser nor the state included Elisabeth among the 258 individuals who began the end-of-life option process during the law’s first seven months. As far as they were concerned, she hadn’t technically made two verbal requests at least 15 days apart.

At last week’s hearing, I wasn’t the only one who took issue with this selective math.

“We’re not hearing about requests for the aid-in-dying act,” UCLA’s Dr. Neil Wenger told the committee. “All we know about are the prescriptions.”

That means the state is only tracking what’s working with the law, not what isn’t. This rose-colored data bias obscures unsuccessful patient stories to policy makers who should be asking where the gaps are.

Along with requesting truer data, panelists also recommended doubling an eligible terminal diagnosis to 12 months instead of six, so that dying patients, especially those with degenerative neurological or cellular diseases, don’t become trapped in their bodies before they can qualify.

The price-gouging of pharmaceutical companies, obstructionist policies of some medical systems and hospice providers, a lack of training for doctors, and a lack of information for patients were also raised as issues of wide concern.

As it stands now, California’s end-of-life option works best for the “model” terminal patient, who has time, resources and luck on their side. Maybe that’s why the limited data shows that mostly white, college-educated patients with private insurance are taking advantage of it.

I asked the staffs of Assemblywoman Susan Talamantes Eggman and Sen. Bill Monning about the flaws in the act, and the recommendations to fix them.

The Democratic lawmakers were instrumental in getting the act passed and view aid-in-dying as a human right that everyone should have equal access to. But their legislative accomplishment couldn’t happen without concessions to the California Hospital Association and the state’s Catholic health-care network. As written, the act sunsets in 2026—unless the legislature can reauthorize it. This has made elected representatives reluctant to propose changes to a law that could still be wiped from existence.

With Republicans threatening Washington, D.C.’s death-with-dignity law, such tampering isn’t beyond possibility.

Monning’s people wouldn’t commit to anything specific. In a phone interview on Tuesday, Eggman acknowledged that any specific legislative changes were years away, as she and her colleagues focus on making the law permanent before they work to make it more perfect.

“One of the issues we want to be careful of is not doing more legislation that would open the act up for lawsuits and being held up in court,” she said. “We want to be sensitive to that.”

Eggman, in particular, has shown an aptitude for sensitivity. At last week’s committee hearing, the former hospice professional never wavered from her place behind the horseshoe dais as she absorbed the raw testimony of a heartbroken widow and widower, a sister, of a daughter and son. What was billed as a sober accounting turned into a necessary mass. Her eyes misty and her voice gentle and low, Eggman commiserated and thanked. She ministered and, when appropriate, she governed.

As Diaz rose to lend me his seat at the table, I reflected on the compromises we make in the hopes of purchasing justice a pace or two down the road. Setting down my notes, I spoke from what was left of my heart. And before I left, I said one more thing:

“I think the last thing I’ll say about my mom is, before I was around, she grew up in Germany, [in] postwar poverty. She was an immigrant. She was a single working mom back when that was taboo. She was a pro-choice advocate before Roe v. Wade,” I said. “And when the world let her down, it was because it wasn’t as compassionate or forward-thinking or brave as she was.”

That’s still true today. But maybe, someday, it won’t be.