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The Santa Cruz Sentinel reported 17 September 2016:

Waiting for ‘the die medicine’

By Tracy Seipel, Bay Area News Group

For 78-year-old Judy Dale, this wasn’t the way California’s new aid-in-dying law was supposed to work.

The San Francisco grandmother, her body riddled with cancer, had hoped to die on her own terms when the time came by ingesting lethal medications prescribed by a physician. But the panic-filled weeks she spent this summer trying to find a doctor — any doctor — willing to participate in the state’s End of Life Option Act were running out.

By the time she located one, it was too late, and when Dale drew her final breath Tuesday morning, it was not the kind of death she — or her family — had envisioned.

“She did not want to die that way, too confused to say goodbye,” said daughter Catherine Dale, crying over the memory of her bedridden mother begging daily to know how much longer she would have to wait for “the die medicine.”

It’s a scene being played out throughout California, as scores of terminally ill patients are learning to their dismay — and outrage — that the state’s new aid-in-dying law comes with no guarantee of finding a doctor.

“What does this law mean in California?” asked Catherine Dale, still seething over the circumstances at UC San Francisco that left her mother scrambling at the last minute to find a physician.

“The law, to me, means you still need to go to Oregon.”

That’s where the nation’s first aid-in-dying law, the Death with Dignity Act, was enacted in 1997. And almost 20 years later, a network of doctors openly willing to help the terminally ill die has grown there over the years. Ultimately, that could happen here.

Similar legislation has been passed in Washington, Montana* and Vermont, with the help of Compassion & Choices, the same nonprofit group that supported California’s version of the law, signed last October by Gov. Jerry Brown.

Three months after it took effect on June 9, however, there are still “challenges getting everyone up to speed,” said the group’s spokesman, Sean Crowley.

The state Department of Public Health, which will track the number of Californians who request prescriptions and those who use the drugs, is not releasing figures until next July, when the law will have been in place for about a year. So far, at least 50 Californians have received prescriptions

, according to Compassion Choices, and about 120 have reached out to a Berkeley physician who is dedicating his practice to aid-in-dying.

Californians who want to use the law must find two doctors whose diagnoses and signatures are required to obtain a prescription for a lethal combination of medications. And critics of the law — which faced an impassioned debate in the Legislature from opponents such as the Catholic Church and disabled rights groups — say the difficulty finding willing doctors is a reflection of the medical profession’s uneasiness with the practice.

Dr. Faith Protsman, a family medicine doctor at Saint Louise Regional Hospital in Gilroy, is among the uneasy.

While she supports the law and the sense of control it gives the terminally ill, she said she is unlikely to participate because she instead would encourage a patient to seek palliative care and hospice to “find physical, mental and spiritual comfort.”

The Compassion & Choices website lists hospitals and health systems such as Kaiser Permanente, Sutter Health and UCSF among others that say they are adopting policies supporting patient choice and educating their staffs about the law. But nowhere is there a list of California doctors who will help patients follow through with their desire to die. Nor will phone calls to Compassion & Choice’s “end-of-life care consultants” offer any leads.

And that will not change, Crowley said. “Most doctors don’t want to be characterized as aid-in-dying specialists, since it is a small part of their entire practice and they may rightfully fear retribution for publicly supporting the law from its opponents.”

But if Oregon’s experience is a guide, more doctors will become comfortable participating in the practice. In 2000, 22 doctors were prescribing medications to end the lives of patients, according to the Oregon Public Health Division, which tracks all data related to the state’s Death with Dignity Act. By 2015, the number had grown to 106 doctors.

But Dr. Steve Jackson, a retired South Bay anesthesiologist who supports the law, says doctors here will need time to adjust to the law.

“The average physician out there is not necessarily going to want to put themselves in that position,” he said. “They will be looking for someone else to pick the ball up and run with it.”

And in Judy Dale’s case, according to her family, her mother’s doctors dropped it.

Catherine Dale said that after her mother — a two-time cancer survivor over 15 years — was diagnosed with inoperable colorectal cancer in May, she made sure to ask one critical question at her first appointment with her new UCSF gastrointestinal oncologist and her palliative care doctor: Would they agree to assist her with the new aid-in-dying law if needed? If not, she told them, she would need to find other doctors who would agree.

Catherine Dale said they both agreed, and that each time her mother saw the doctors for follow-up appointments, the septuagenarian would always check about the promise they had made to her.

By August, while talking with a social worker at UCSF, she happened to mention her support of the law and how her oncologist had agreed to back her if it came to that.

“But she told her that wasn’t the case at all — the whole GI oncology department had opted out of the law,” Catherine said. Outraged at the revelation, her mother asked for an appointment with the oncologist to clarify the matter.

And indeed, when she saw the oncologist, Catherine said, the doctor apologized and told her they would not be able to participate in the law.

“She told them that was the biggest lie — the lie of omission,” Catherine recalled.

“We were back to ground zero” trying to find a prescribing doctor in mid-August, just as her mother’s condition took a turn for the worse, Catherine said.

Susan Penney, director of risk management at UCSF, said privacy laws prohibit her from talking about specific patients. But she said that the hospital has worked since February to implement policies and procedures for patients seeking UCSF doctors to participate in the law.

So far, she said, about 25 to 30 of the hospital’s patients are in the process of asking about the law, and one prescription has been ordered, “with several other pending.”

She did not know how many had taken the medication.

“This is a big sea-change in terms of approach to patient care and end-of-life care,” Penney said, adding the law is voluntary for all involved. “This is not UCSF prescribing the drug; it is the physician.”

And, Penney said, it’s also up to each doctor to decide if he or she wants to refer patients to other physicians.

The Dales said they didn’t get any referrals from UCSF. So on their own, they found Dr. Lonny Shavelson, a Berkeley-based physician who recently established a practice devoted solely to evaluate patients who might meet the requirements of the new law: They must be an adult, a state resident, mentally competent and have a terminal diagnosis of at most six months to live, confirmed by two licensed physicians. People suffering from dementia of Alzheimer’s disease cannot qualify.

Shavelson said he is alarmed at the number of Californians who cannot find a doctor to assist them with the law.

“There are dozens literally who want that type of death who cannot access this law,” Shavelson said. “And I have the data to prove it.”

On his computer, the doctor is building a detailed list of dozens of patients who have contacted him from around the state — all of them seeking prescribing physicians to begin the process. By Friday, the list had grown to more than 100 names.

Without being specific, Shavelson said some have died before they could receive the drugs, and others have died after successfully ingesting the medication.

Marti in Sutter County was on that list. The 74-year-old grandmother with liver cancer also died last Tuesday, less than eight hours after Judy Dale.

But Marti had managed — barely — to do what Dale could not: determine her own end by swallowing the lethal prescription afforded her under the new law.

Yet the weeks that her grown children spent searching for a doctor to help had almost ended her chance, said one of her adult sons, who asked not to be named because relatives are unaware of his mother’s decision.

“It was disappointing that she was not able to do this when she wanted to, when she was feeling stronger,” said the son, who with two other siblings watched as their weakened mother lay back in her favorite green recliner and drank her medication — within the prescribed two minutes — then quickly fell asleep, her heart stopping within an hour.

“But with all the bureaucracy,” her son said, “it took a lot more time than we thought to find someone who would help us.”

CORRECTION: Montana has declined to legislate, for or against, on this subject. But there is a State Supreme Court ruling that doctors should not be prosecuted.

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