Reclaiming Death: California’s End of Life Option Act

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When we talk about death what we’re really talking about is life.” – Dr. Dawn Gross, host of the radio show “Dying to Talk”

What happens when you die?  That to me is the only thing really that’s of any importance.” – George Harrison

California’s End of Life Option Act takes effect today, allowing doctors to prescribe life-ending drugs for terminally ill patients who must meet strict guidelines and follow lengthy procedures before taking the medicine themselves.

The law is the culmination of decades of efforts that peaked when Brittany Maynard moved from California to Oregon, where she availed herself of a similar law just before her 30th birthday in 2014. Her death sparked a national debate and an explosion of proposed state legislation.

On the surface, California’s law is the latest headline in a growing national movement towards kinder, gentler end of life care.

Yet the End of Life Option Act is much more than that.

It’s another step towards overthrowing a system in which doctors — even religious leaders – tell people how to live and die.

The women’s movement offers critical lessons in this fight to control healthcare decisions. Besides demanding reproductive rights and access to abortions, women have doggedly fought for home births, midwives and birthing centers.

And for years, physicians had blithely informed women they would (of course) have a mastectomy for breast cancer — until doctors were forced by law to discuss other options, such as lumpectomy.

The history of medicine is littered with such paternalism.

At the recent “Endings Matter” conference sponsored by San Francisco’s excellent Institute on Aging, one doctor recounted her interaction with a dying patient forced to suffer in the hospital because he’d never been asked where he wanted to die.

“Do you want to go home?” asked the doctor sympathetically.

“Yes,” he replied, crying tears of relief. “I never want to see you again.”

It’s a conflict summarized by Stanford longevity expert Dr. Walter Bortz II in his book “We Live Too Short and Die Too Long.”

At the same conference, another doctor admitted her response when a patient she’d sent to hospice — she expected him to live less than six months —was catapulted back up and out of hospice after enjoying improved health.

“What did that do to my ego?” she recalled with self-deprecating honesty. “It was horrible.”

The End of Life Option Act is the ultimate example of today’s most heralded medical catch phrase: patient-centered healthcare. It returns the power of health decisions — even at the time of death — to the person who matters most.

While California joins a handful of other states around the country with assisted dying laws — Oregon, Vermont and Montana— it’s sheer size makes it far more than just the most recent addition to the list.

“Now one in six Americans have this option,” says Matt Whitaker, California state director for Compassion & Choices, the advocacy group leading the aid in dying movement nationally. “It’s huge.”

And like many progressive movements launched in the Golden State, as goes California so goes the rest of the country.

“There’s this opportunity to change the whole country,” he adds.

Based on Oregon’s experiences, Compassion & Choices predicts that in the first year of the new law, there will be about 1,500 prescriptions written in California — although only around two-thirds will likely be taken. Of Oregon’s 1,545 prescriptions written between 1997 (when the law passed) and last year, only 991 patients have ingested the medications – or 64%.

Many terminally ill patients ask to have their prescription filled solely for the peace of mind it offers during times of excruciating physical and psychological pain.

Perhaps more important, Whitaker says that for every prescription written about 250 discussion will be started. That means an estimated 34,000 conversations will be started in the next year — perhaps more given the media attention following Maynard’s ordeal.

The new law also collides with a host of other complex topics.

A UCLA researcher reports that state physicians are largely unprepared for the law — often fearful that discussing end of life will be seen as surrender by patients. (Organizations like the California Academy of Family Physicians and the California Medical Association have plentiful resources to help physicians prepare for the Act, and end of life discussions in general.)

Members of the community of people with disabilities and ethnic minorities — some of them impoverished and poorly educated — are fearful that they’ll die at higher rates than their white, able counterparts. In truth, most assisted deaths have been among white, college-educated patients over 65 who suffered from cancer.

Besides overthrowing medical convention, the End of Life Option Act also confronts centuries of religious dogma.

During the “Endings Matter” conference, the opening panel of religious scholars spanning the world’s major faiths – Islam, Christianity, Buddhism and Judaism — peppered the decorated halls of St. Mark’s Lutheran Church with words like “compassion,” “grace” and “kindness.”

Yet when asked about the Act taking effect just three weeks away, each expressed opposition to the new California law – on spiritual grounds ranging from karma to divine guidance.

“The unfortunate thing is often times that ‘grace’ and ‘compassion’ becomes diluted when mixed with religious dogma,” says Whitaker. “I’m a Christian. I’m actually a theology student, and I find it to be problematic theology – especially from a Christian perspective – to turn a deaf ear to those who are suffering. It’s reprehensible.”

Yet Whitaker is quick to point out the many religious groups – or individuals within opposed religious groups – who support assisted dying laws: Unitarian, Methodist, Jewish, even Catholic. (As a practicing Jesuit – which is part of the Roman Catholic order – Gov. Jerry Brown signed the End of Life Option Act last year.)

Finally, as the California law takes effect, it’s no secret that assisted dying has always been practiced around the state — quietly and underground. Today’s law merely brings the practice out into the light of day.

“This is happening across the country with a wink and a nod,” says Whitaker, “with a physician saying ‘If you took a lot of these you would die – here’s the bottle.’ There’s no transparency and no regulation.”

Probate attorneys agree California’s law is well crafted. And that these assisted deaths will be closely scrutinized by everyone.

Yet supporters of the law say Oregon is a prime example of success since not a single example of coercion or abuse has occurred in Oregon since that law took effect 18 years ago.

In a world where doctors are often all powerful, the End of Life Option Act offers suffering Californians a graceful, compassionate exit strategy from their own divine existence – on their own terms.

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