California’s right-to-die law has been embraced by many around the state — from scores of patients and their families to individual doctors, some hospice caregivers and several health care systems.
But as positive as the reception appears to be so far, plenty of challenges remain, according to testimony offered from experts and other stakeholders during an almost 3½ hour-long legislative hearing at the state capitol on Wednesday.
Signed into law by Gov. Jerry Brown in October 2015, the End of Life Option Act allows any mentally competent California adult, diagnosed with less than six months to live, to end their life with a lethal drug prescription from their physician.
Yet several of those who spoke Wednesday at the first Select Committee on End of Life Health Care meeting, chaired by Assemblywoman Susan Talamantes Eggman, D-Stockton, said terminally ill patients still have a hard time finding doctors willing to prescribe the lethal prescription drugs since the law went into effect in June 2016.
And even if they manage to locate the two doctors needed to sign off on the law’s required documentation, they may face unnecessary delays in obtaining the drugs from a limited number of pharmacies.
Worse, by the time the dying patient has made his or her request known, they may be too sick to make it through the law’s required 15-day-waiting period to ensure that patients are not making an impulsive decision.
Dr. Lynette Cederquist, a hospice and palliative medicine specialist at UC San Diego, said in her experience, the most surprising aspect for her in these cases is the sense of urgency patients have once they made the decision to use the law.
“Even a two- to three-day delay seems to be excruciating,” she said, “given the multiple steps required in the process. … And there will be inevitable delays.”
“I think the challenge is balancing safety with (those) hurdles,” Cederquist said.
Eggman, a co-author of the law, pointed out that that “is what we are trying to do with the implementation.”
Cederquist also said it’s one thing if the patient is still able to visit their doctor. But for patients to make several visits as their health declines is “very burdensome,” she said.
She suggested the possibility of using telemedicine for some visits, and reducing the number of days from 15 days, possibly to seven to 10 days.
One fear that many opponents of the law had harbored — that dying patients would be coerced to use the law — seems not to be playing out, according to those who testified.
Doctors, hospice caregivers, and hospital systems representatives said Wednesday that medical aid in dying is just one option among many.
The broader medical goal, they emphasized, is making sure that patients have access to all forms of care, from pain management to palliative care and hospice care — and aid in dying if that proves to be the appropriate measure.
If anything, said Dr. Catherine Forest of Stanford Health Care, the law has helped break down barriers about the process of dying with patients.
“It allows us to speak about palliative medicine and hospice care in a much more accessible way,” Forest said.
The law also requires the California Department of Public Health to collect data about those who request to use the law.
In the first six months — from June 9, 2016 through Dec. 31, 2016 — data compiled by the health department showed that almost 200 Californians received the lethal drug prescription, but only 111 ingested it. Newer data will be released in June.
Nearly 60 percent of those who asked their doctor for the end-of-life remedy were suffering from cancer; 18 percent had been diagnosed with a neuromuscular disorder like ALS or Parkinson’s disease, while many suffered from heart and respiratory diseases; and the median age of people who used the new law was 73. Most of those who used the prescription were white.
But some speakers, including Cindy Cain, an assistant professor at the UCLA School of Public Health who has been researching data related to the law, said there’s a need for more information to better understand how the End of Life Option Act is being implemented around California.
“We do not have an adequate estimate of the health care systems that have adopted strategies,” she said. “Patients lack knowledge about the process and wish they had more information about it.”
All of the University of California hospitals are participating in the End of Life Option Act, with protocols in place to help these patients.
Dr. Nathan Fairman, a psychiatrist with a subspecialty in hospice and palliative medicine at UC Davis, noted that the university has developed a patient navigator system to ensure a fluid process.
The system is bolstered by several layers of oversight and accountability built into the UC Davis policy, he said, noting that a patient request to use the law triggers a notification of the UC Davis legal department, bioethics department, chief medical officer, and senior pharmacists “just to let them know there is a new case in the pipeline.”
Senator Bill Monning, D-Carmel, who introduced the End Of Life Option Act, and former Senator Lois Wolk, D-Davis, a co-author, both sat in on Wednesday’s meeting.
Monning later said he was pleased to hear the stories from many of those who spoke about the relief the law had given members of their families.
He was also impressed by representatives of the larger health care systems, including Kaiser Permanente Northern California, and the coordinated teams they have assembled to deal with the law.
“It shows just how serious they have taken it up throughout different disciplines … and fortunately the big institutions have the resources and the ability to do that, which is less available to small group practices or those in solo practices,” Monning said.
“But I think these academic centers are where we can develop best practices.”
