A year after it passed, California’s right-to-die law still faces challenges

June 08--For Betsy Davis, California's End of Life Option Act worked exactly as intended.

"It was like a weight was lifted off her shoulders," said Davis' sister, Kelly Davis. "She got her sense of control back because she knew she had the option."

The option, of course, was death.

Betsy Davis, of Ojai, diagnosed with ALS in 2013, was one of the first to take her life legally under the state law approved a year ago Friday, June 9. She began the process the day after state legislators passed it in what Gov. Jerry Brown called an "extraordinary session."

"I was there when Betsy talked to her caregiver, on June 9, about making an appointment with her doctor to discuss it," Kelly Davis said. A month later, at age 41, Betsy Davis took her life.

It's not known how many people have followed her.

According to the national nonprofit Compassion & Choices, since June 9, 2016, at least 504 terminally ill adults in California have received prescriptions for the lethal drugs. But the group does not know how many of them actually ingested the drugs, which range from Seconal, a sedative that costs around $3,500 per prescribed dose, to a combination of a sedative and a drug that stops the heart, for about $600.

Assisted death is also legal in Oregon (the first state to pass the law, in 1997), Colorado, Vermont, Washington, Montana and the District of Columbia. The California law passed after gaining momentum from the advocacy of UC Irvine graduate Brittany Maynard, who moved to Oregon because of that state's Death With Dignity Act.

Maynard, 29, was diagnosed with terminal brain cancer. Her online videos announcing her decision to end her life on Nov. 1, 2014, and urging the passage of an assisted death law in California, got millions of views.

While the path has been straightforward for some, for many other terminally ill Californians the End of Life Option Act has led to a desperate race against the clock -- with patients' families frantically searching to find the required two physicians that patients must work with to get the drugs. The law also mandates a 15-day waiting period between the two oral requests they must submit, one to each doctor, further slowing the process.

For patients, that wait could mean a painful death, or the crippling fear of suffering such a death. That fear was very real for David Minor, a Manhattan Beach psychologist who was diagnosed with a terminal lung disease.

"He was terrified of choking on his own mucus," his daughter Valerie Minor Johnson said Wednesday.

But his original team of doctors refused to support his decision to end his life on his terms, she said. They also declined to give him a referral.

"He felt helpless," Johnson said. "We felt helpless because we didn't know where to go. "

After hours of research, Johnson's sister, Jacqueline, following a cold call to Kaiser, found that the family could switch Minor's health plan. A month after transferring to Kaiser's hospice system he passed away, taking a lethal dose of drugs as he lay on his bed holding hands with his wife and two daughters.

"It ended peacefully, but there were many challenges along the way," Johnson said.

Opponents of the law say they still have questions about its implementation and how it will affect vulnerable patients.

"We are still very concerned, particularly given surrounding health care -- at the state and federal level -- and how that could impact patients," said Tim Rosales, spokesman for Californians Against Assisted Suicide.

Some patients say the law has made it more difficult for them to get necessary, life-saving treatment.

Stephanie Packer of Orange, who was diagnosed with terminal lung disease and lupus, says since the End of Life Option Act passed, she has had trouble getting treatment and medication. Packer has been a vocal opponent, speaking on behalf of the Catholic Church on this issue.

Packer, a 34-year-old mother of four, says she asked her insurance company if she was covered for assisted death.

"They told me I was, for a co-pay of $1.20," she said. "This should not be happening to patients, but it is."

Supporters maintain that the law has not turned into the "killing field" some said it would.

Dr. Robert Olvera, a retired Santa Ana physician whose daughter Emily Rose died of terminal cancer in 2014, is relieved that Californians now have the option his daughter didn't.

When she died, Emily Rose could not see, walk or eat.

"California's process is a little more cumbersome than Oregon," Olvera said. "But people are getting the medication and it does seem to be working. It's much better when people can control their destiny."

Exercising the option has been more difficult for people living in parts of California where large health networks have refused to participate, said Mark Whitaker, California and Oregon state director for Compassion & Choices.

In Coachella Valley, Eisenhower Health, which controls a majority of clinics and hospitals, has banned physicians from participating in the End of Life Option Act, Whitaker said.

"When that happens, patients may have to drive longer distances or break continuity of care by changing networks to be able to have that choice," he said.

Eisenhower issued a statement saying it is committed to "providing appropriate, relationship-based, caring support for all dying persons by helping patients make informed decisions about end-of-life care and providing a range of available options, including palliative care, hospice care, comfort care and pain management."

While physicians in its facilities are prohibited from participating, they may provide information or referrals or even prescribe medications privately, outside of Eisenhower's network, the statement said.

For Betsy Davis, the law was a blessing, her family says.

On July 24, as the sun went down, Davis, surrounded by family and friends, took the cocktail of morphine, phenobarbital and chloral hydrate mixed into a coconut milkshake to mask the bitter taste, and slowly slipped out of consciousness, her sister, Kelly, said.

She took her last breath after an "end-of-life party," where her friends danced, sang and played instruments. They modeled her clothes and put Post-It notes on things they wanted to take as "Betsy souvenirs." They ate pork and chicken tamales, her favorite food.

Said Kelly Davis: "It was the best of a bad situation."

Tracy Seipel, staff writer for the San Jose Mercury News, contributed to this report.

By the Numbers

504: Prescriptions written since June 9, 2016, in California for medical aid in dying

104: Hospice locations in California that support patient choice

498: Health care facilities in California that support the End of Life Option Act

80 percent: Health insurance carriers that cover medical aid in dying

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