Death with dignity movement is alive and well

January 22, 2015

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CA –  Palm Springs residents Bill Bentinck and his wife, Lynda, were not afraid of having the big talk no one really wants to have. “We both told each other that we didn’t want to live through a painful dying process,” Bentinck said, “and when the time comes we’ll just do it and get it over with. No fear.”

Lynda became seriously ill in 2012, and they thought about moving to Oregon, where the Death With Dignity law has enabled terminally ill people to legally end their lives with a doctor’s prescription. But they didn’t want to uproot, so when Lynda’s suffering from emphysema had so diminished her life, she removed her nasal oxygen catheter, asked her husband to fix her a drink and they said their goodbyes.

As if losing his wife weren’t traumatic enough, Bentinck was led from his home in handcuffs and held for three days on suspicion of murder before authorities came to their senses and released him with no charges. Bentinck became an advocate for establishing the right to die in California, and when I called him Monday night to tell him legislation is being introduced this week, he was particularly grateful.

“Golly,” Bentinck said, “I think it’s possible this time, because people are changing a little bit.”

In fact, a Field Poll found 70% of Californians support aid in dying, and I met last week with the two state senators behind the End of Life Option Act being introduced Wednesday in Sacramento. Such legislation has been beaten back in the past, and there is sure to be fierce opposition this time around too.

But the movement picked up some momentum last year after the highly publicized case of 29-year-old Brittany Maynard, who had an aggressive form of cancer and moved from California to Oregon to take her own life on her own terms.

State Sen. Lois Wolk (D-Davis), coauthor of the bill, said that in Oregon, the predicted abuses haven’t materialized since Death With Dignity began 20 years ago. Of the 1,200 patients who qualified for a prescription, about 400 chose not to use it.

“When you ask people what’s important to them, it’s peace of mind,” Wolk said. “It’s the autonomy, and knowing that if things get very bad, they’ll have an option.”

As I’ve said in the past, I’d like the option for myself, having watched my father suffer too many compromises and indignities during his long demise. He declined a feeding tube as the end neared, having realized, perhaps, that yet another medical procedure wouldn’t extend his life so much as drag out his death.

Some have argued that anyone who chooses to die can refuse food and water, or that palliative sedation leads to natural death, making the legislation unnecessary. And that’s fine for those who choose either method, but why not an additional option for those who don’t want to be a burden on loved ones or hang on for the sake of hanging on? And why is it legal for a doctor to unplug a ventilator but illegal to write a prescription?

Despite growing support in the polls, the bill’s sponsors expect major opposition from three groups.

Many but not all doctors, trained to heal, are philosophically opposed to enabling the opposite. They’re also wary of becoming pawns in messy family dramas in which relatives might benefit financially from a loved one’s death.

Catholic Church leaders have bankrolled campaigns against prior attempts in California, arguing that the taking of one’s life violates divine law.

And some disability rights advocates are vehemently opposed. Marilyn Golden, senior policy analyst with the Disability Rights Education and Defense Fund, warns that heirs and caregivers would have opportunities for abuse, and that legislative safeguards for people suffering from depression and other mental disorders are hollow.

Golden also told me the marriage of a profit-driven healthcare system and legalized aid in dying sets up dangerous possibilities. She warned of a scenario in which insurers might deny or delay life-sustaining treatments and a patient “is steered toward assisted suicide.”

But attorney Kathryn Tucker, who has gone from directing the legal battle for death with dignity at Compassion & Choices to leading the Disability Rights Legal Center, sees it differently. She said there’s actually “strong support for expanding end-of-life choices” among many people with disabilities.

“We now have a great abundance of data from Oregon and Washington that makes clear there is no harm to persons with disabilities when aid in dying is available,” Tucker said.

Monning and Wolk told me they’ve begun meeting with opponents, inviting them to weigh in but also warning them that if the legislation fails, a ballot measure is likely next year.

Under their bill, no doctor would be required to participate, and doctors would not administer the lethal drugs — the patient would. Two doctors would have to independently determine that a terminally ill patient was mentally competent and likely to die within six months, and there would be civil and criminal immunity for doctors.

When “you’ve gone through what we’ve gone through — you with your father and me with my sister — it seems almost criminal that we haven’t had the option,” said Long Beach resident Anita Freeman, whose sister Elizabeth suffered a long and agonizing death last year.

Sandy Wester is in full agreement, having watched her husband, Donnie, die what she called a barbaric death in 2012. I first heard from her by email after she had read my column on Bill Bentinck’s arrest in Palm Springs.

“My husband has repeatedly asked me to give him a gun, he has asked me to shoot him and he repeatedly begs to die,” she wrote at the time.

Her husband’s body was being removed from their Northern California home when I arrived, and Wester told me on the spot that she was joining the death with dignity movement. When I called her Tuesday to say legislation was being introduced here this week, she said she’d do whatever she can to advocate for it.

“I thought long and hard about moving to the Portland area, but no. I love California and I’m a Californian, and I want to make something happen in this state,” she said. “With a lot of us baby boomers, it’s not just about the quantity of life, it’s the quality. I don’t want to just exist.”