Aid-to-dying law’s loophole for providers
Judy Dale died of cancer in her San Francisco home in September, in agony, after being denied the pain-relieving medication she might have received under the state’s aid-in-dying law that had taken effect three months earlier.
A lawsuit by her children will determine whether UCSF Medical Center, where Dale first went for treatment, was responsible for her suffering by allegedly concealing its oncologists’ decision not to provide life-ending drugs to patients who ask for them. More broadly, their suit illuminates the inner workings of a law that confers new rights on terminally ill patients, but few obligations on their health care providers.
The law allows a medically competent adult who has six months or less to live to ask a doctor to prescribe lethal medication. The patient, not the doctor, must be the one to administer the
drug. Two doctors must agree on the terminal diagnosis, and the patient must make two requests, at least 15 days apart, before receiving the medication.
But doctors and hospitals are not required to take part in the process or to refer the patient to someone who will grant the request. Hospitals can prohibit their physicians from prescribing lifeending medication, something that medical centers affiliated with the Catholic Church and some secular hospitals have done. And a doctor who has decided not to prescribe the drugs is not required to disclose that fact until the patient asks for them.
Those provisions helped persuade the powerful California Medical Association and California Hospital Association to drop their opposition to assisted-dying legislation that had been rejected four times by state lawmakers, and once by the voters in 1992, before the Legislature passed it in 2015. They may have also made it harder for patients to find doctors who will help them end their lives.
“They’re not required to discuss the aid-indying law with their patients even when discussing other end-of-life treatment options,” said Dr. Lael Duncan, medical director of the Coalition for Compassionate Care of California, which seeks to inform health professionals and the public about caring for terminally ill patients but is neutral on physician assistance in dying.
Although no studies of doctors’ views have been conducted since the law took effect, Duncan said her conversations with colleagues and other information led her to conclude that far fewer than half of California’s 135,000 licensed physicians would agree to prescribe life-ending medications.
Some have religious or personal objections, she said, and others just don’t see it as part of the doctorpatient relationship. Even most doctors who specialize in end-of-life care, such as those who work in hospices, “don’t have comfort or expertise” in the new law, Duncan said.
Judy Dale never learned why her doctor at UCSF and his fellow oncologists refused to provide life-ending medication. In fact, her two daughters said in their San Francisco Superior Court suit last month, she told doctors and others at the medical center from the time of her hospitalization in June 2016 that she wanted the medication and was assured it would be available, until she learned the truth from a social worker more than two months later.
By the time the 77-yearold Dale and her family could locate a willing doctor elsewhere, the suit said, it was too late — she requested the medication and died 14 days later, one day before the law’s waiting period expired.
To compound the family’s grief, her husband of 35 years, Gene Dale, who had also been a patient at the UCSF hospital, died in January at age 90.
“It was a horrible period,” said Catherine Dale of Santa Rosa, who described her mother as an artist who had seen her own mother die painfully of cancer and was determined not to suffer the same experience. “Each time she woke up, that was her question — ‘How many more days?’ ... They took her last bit of dignity.”
The lawsuit seeks unspecified damages for alleged fraud and elder abuse.
UCSF did not comment on the accusations, but said its medical center was “one of the first hospitals in the state to develop the process for implementing” the new law. The hospital “respects clinicians’ rights not to participate,” the university said, but in such cases, a written policy statement tells patients that a social worker “will assist you in finding a doctor who has agreed to participate.”
That never happened in Dale’s case, her daughters said.
Medical industry observers say California appears to be following the same learning curve experienced in other states with aid-in-dying laws, starting with Oregon in 1997.
“Hospitals may be taking a more conservative position now when the law is new,” said Jackie Garman, vice president and legal counsel of the California Hospital Association, which represents about 400 medical centers. “As the state develops more experience, it’s possible they’ll revise to be more flexible.”
She said expectations that a small group of doctors would issue most of the prescriptions for life-ending drugs were contradicted by a study of the first few months of the California law, which found that the 193 lethal prescriptions were written by 171 different physicians. And opponents’ warnings that greedy relatives would exploit the law to hasten a family member’s death have not been borne out in other states, Garman said.
Catholic hospitals, while opposing the California law, acknowledge that it has “stronger conscience protections” for medical practitioners than laws in other states, said Lori Dangberg, a vice president of the Alliance of Catholic Health Care.
She said the churchaffiliated hospitals, which provide about 13 percent of acute-care hospital beds in California, have heard from a number of terminally ill patients expressing interest in the new law.
“The vast majority, once they had a chance to talk with caregivers about the kind of support they and their families will receive, their pain, their fear of being a burden to their families, and (after) we bring in social workers, chaplains and nurses to address their emotional, social and spiritual needs, those patients are no longer interested in pursuing assisted suicide,” Dangberg said.
But she said she has encouraged the hospitals to refer patients to a “neutral organization” like the Coalition for Compassionate Care for information on a range of options.
On the other side of the issue, San Diego physician Bob Uslander, who specializes in end-of-life care, said he has prescribed lethal medications for 25 patients in the past year and stood nearby, as a “supportive presence,” while they died as they had chosen.
“I see their struggle, feel their suffering and I know that I have the ability to help them get relief, which is what they’re looking for,” said Uslander, who has practiced medicine for 30 years.
On Thursday, he said, he watched as a 93-yearold woman, immobilized and exhausted from her fight with cancer, took the medication at her home with her three daughters nearby.
“She was so excited about moving on, leaving this afflicted body behind,” he said. “Her daughters mixed up the medication, we all had glasses of ginger ale, everyone toasted her, she drank the medication and died peacefully in 15 minutes. Her daughters felt so relieved for her.”
Another who has furnished the medication is Dr. Catherine S. Forest, a clinical associate professor of medicine at Stanford and medical director of the Stanford Health Care facility in Los Altos. She also trains other doctors in procedures under the new law — training the state has failed to provide, she said.
In some cases, she said, treatments are available to ease a patient’s pain, shortness of breath and feelings of helplessness, leading them to choose stress-relieving palliative care for the final months of their life. But Forest said that when a mentally competent patient, aware of the alternatives, makes a different choice under the law, she is willing to carry it out.
“I believe in helping to prevent suffering at the end of life,” Forest said. “Most patients who choose medical aid in dying want to live. They just don’t want to live this way.”
She recalled the ordeal of a family friend about a decade ago who had palliative and other medical care, but continued to suffer in his final months, and decided for family reasons not to move to Oregon for life-ending medication.
“He told me, ‘If you ever get a chance ... if it ever becomes possible in California, this would be the healing at the end of life,’ ” Forest said. “This is what a compassionate physician would offer him.” Bob Egelko is a San Francisco Chronicle staff writer. Email: begelko@ sfchronicle.com Twitter: @egelko
Doctors are “not required to discuss the aidin-dying law with their patients even when discussing other end-oflife treatment options.” Dr. Lael Duncan, Coalition for Compassionate Care of California