Will Gov. Jerry Brown sign California's death with dignity legislation?
California lawmakers finally pass death-with-dignity legislation—but is the governor on board?
Perhaps by the time you read this, Gov. Jerry Brown will have put pen to paper and signed into law the End of Life Option Act, or Assembly Bill X2-15. Passed last week by the state Legislature on a bipartisan vote, it would make California the sixth state in the nation allowing doctors to help the terminally ill end their lives.
At the time of final passage on Friday, the last day of the special legislative session, it was unclear whether Brown would sign or veto the bill. He’ll have 12 days to decide after he receives it from the Legislature, which was expected to happen sometime this week. If he takes no action in 12 days, the legislation automatically becomes law.
We know that Brown, a former Jesuit seminary student, hasn’t publicly taken a position on the measure. He believes it should have been reintroduced as part of a normal legislative process, not during the special session, where the legislative process is curtailed. Reporters at the Capitol that had a chance to ask the governor his opinion on the measure got a terse, “Nothing that I would say publicly.” Not exactly the strongest endorsement. But backers are ready to bring the issue to voters through a ballot measure, where they say it will pass easily. Polling data from 2014 found California voters supporting such a measure by more than a 2-1 margin.
We also know that, last year, the governor spent an hour on the phone with Brittany Maynard, the young Bay Area woman who moved from California to Oregon to end her life under that state’s Death with Dignity Act. Maynard changed the optics of the right-to-die debate. Photogenic and 29, she was hardly who most of us imagine facing such a scenario. The median age of Oregonians who employed physician-assisted death is 71.
But while Maynard’s story is familiar to many—more than 16 million unique visitors read about it on People.com—few have faced a more desperate moment than Robert Marquis did while caring for his dying brother.
“I had gotten to the point where Roger was unconscious and I actually put the pillow over his head,” Robert told SN&R. “But then I thought, ’No, I can’t.’”
Roger spent years suffering from a chronic and incurable disease called postherpetic neuralgia, a painful condition that affects the nerve fibers and skin. Skin becomes painfully sensitive to the touch, like a bad burn. Sleeping, even wearing clothes, can be agonizing. It’s not a fatal condition, but in cases where various treatments become ineffective, the nonstop pain is torturous enough to make you wish you were dead.
For Roger, whose wife had succumbed to cancer last year, it became a final blow, and led to what’s called “failure to thrive,” a gradual decline in health typically caused by medical problems like a chronic disease. With the help of a chaplain, Robert eventually managed to get his brother into hospice care, where he simply faded away.
Robert, who lives in Antelope, emailed last month, on the morning of his brother’s death. We spoke Saturday, the day after the Legislature’s final vote. The anguish still lingered in his voice: “Roger was in constant, constant pain, crying, bleeding, unable to sleep. There was no relief from medication, but doctors couldn’t say he was terminal. He finally asked me at one point, ’If I get to where I’m not able to communicate to anyone, just put a pillow over my head. Make sure it’s done. I don’t want to be a vegetable.’
“The most humane thing in the world would’ve been to do that,” Robert said. “I wanted to in the worst kind of way.”
One wonders how many other people in Robert’s position have thought the same thing.
What stopped him was the possibility of being found out and tried for murder. “We put down our pets when they’re suffering, but if I’d done that to Roger, I’d have ended up in prison for doing something humane,” he said.
It’s possible that a jury might have had a hard time convicting him. “Maybe,” he said, “but even going through the process of a court trial would have been a nightmare.”
It’s bittersweet that the Legislature passed an aid-in-dying bill three weeks and three days after Roger’s death—but the additional irony is that, as law, the measure would legalize a solution that eliminates the need for a deed many would consider an act of mercy instead of grounds for imprisonment.
“My brother would appreciate the bill’s passage,” Robert said. “He wasn’t in good enough condition to drive to Oregon. We had talked about that. He thought it was very unfair that he didn’t have that option here in California. In a way, it makes me angry that he didn’t have this option but I’m glad other people will, or it looks like they will.”
Banned everywhere but Oregon until 2008, the option for terminally ill patients to end their lives soon became legal in four other states: Washington, Montana, New Mexico and Vermont. Advocates have learned to shun the term “assisted suicide,” despite its near-universal usage in media coverage.
“It is not suicide at all,” explained Davis-based Democrat state Sen. Lois Wolk, a co-sponsor of the legislation and a strong supporter of suicide prevention. “Suicide is an impulsive, destructive act by a person who may well have their entire life in front of them. They’re not suffering from a terminal illness and they’re in a situation where they can’t think rationally about their futures.”
In other words, most suicidal people can be saved. Those dying from a terminal illness cannot—and they almost certainly wouldn’t consider suicide were they healthy and not facing imminent death. Thus, advocates favor terms like “death with dignity,” “aid in dying” or “compassionate care.”
Like its Oregon model, California’s End of Life Option Act requires two physicians to diagnose you at end-stage terminal illness (six months to live) and a psychiatrist or psychologist to attest that you are of sound mind and not being coerced.
Similar bills failed in the Legislature in 2005 and 2007, and California voters rejected a 1992 proposal that would have allowed physicians to administer lethal injections to their patients. This year’s legislation struggled to get out of committee during the regular session due to opposition mostly from the Catholic Church and other religious groups and disability rights activists.
“They wouldn’t say we shouldn’t have chemotherapy, we shouldn’t have radiation,” said Assemblywoman Susan Talamantes Eggman of Stockton, a Roman Catholic, former hospice worker and the author of A.B. X2-15. “It’s a fallacious argument.”
Disability-rights activists and others fear family members or care providers might coerce people with dementia or cognitive impairment into ending their lives. “I’m not going to push the old or the weak out of this world,” said Sen. Ted Gaines, the Republican from Roseville, on the floor last week. “I think that could be the unintended consequence of this legislation.”
Legally, that’s not possible. People with cognitive impairments or developmental disabilities aren’t eligible for the California bill’s provisions. The same is true in the other states where aid in dying is legal.
“I have committed to a legislative hearing once a year where we get a report back from [the Department of] Public Health,” Eggman said, “so we can monitor the law as we go forward, how it’s working, how it’s being used.”
Oregon has plenty of data on this front. From 1997, when it enacted its Death with Dignity law, through 2014, 859 people have ended their lives of their own accord. “And there’ve been no lawsuits, no one has been abused, no one has lost their license and no one has even been taken before a medical board,” Wolk said.
Coercion, however, seems to be a big part of our health-care system. Within a week of being contacted by Robert, an old high school friend, Simonetti Samuels, called with a similar tale about her sister Jasmin in New York, a state that has yet to enact an aid-in-dying law.
Jasmin took ill last November. A brutal onslaught commenced. Over the next eight months, she suffered one vicious malady after another: brain bleeds, clotting, seizures, partial paralysis, in and out of comas, bed sores, bladder infections and multiple surgeries at New York University, her alma mater, with follow-up rehab and radiation treatments at a nursing home.
In July, she was diagnosed with spindle cell sarcoma on her right frontal lobe, a brain cancer so severe that, even with aggressive treatments, life expectancy is just six to eight months. By August, the cancer had spread to her bones and lungs. The family moved her into hospice care. She died on August 28.
It was a relentless, crushing, dehumanizing decline, and the total cost of all the medical treatment that failed to abate it was $4.5 million.
Whether covered by Medicare (it wasn’t) or insurance (it was; Jasim’s husband is an economist with the U.S. Treasury), taxpayers all paid that bill. Our taxes, our hospital fees, our insurance premiums all indirectly pay for such costs. If that money had to come out of the family’s own pocket, would it not have been better left to Jasmin’s two teenage children?
Jasmin, it seems, became a victim of medicine’s “do everything” philosophy, ideologically adhered to by a rigid medical culture even when doing everything no longer does anything. Moderation and, ultimately, resignation, take a back seat to desperation by loved ones and the urges of a health-care system to deploy every last aggressive procedure in ways that are medically futile for patients, painfully cruel for families and wastefully expensive for all.
A massive report issued last year by the Institute of Medicine found that providers are often encouraged to “render more services and more intensive services than are necessary or beneficial.”
For those worried about the abuse of laws that allow you to end your life, how is it not abusive for a system that autonomously prolongs your death?
Few things are as hypocritical as preaching about freedom while opposing a death-with-dignity law, but the hypocrites always seem to come from the same ideological corner, complaining about government denying freedoms—and then demanding that freedoms they dislike be denied by government.
The question now for the governor, who refused to defend Proposition 8 because he felt it denied freedoms to certain individuals: Is the value of individual liberty and the serenity it can provide greater than the technicalities of legislative procedure?