Dr. Kathryn Shade supports California’s right-to-die law and has helped a dozen Bay Area residents with terminal illnesses end their lives by taking a lethal dose of drugs.
But most of the Los Gatos physician’s patients probably have no idea she has chosen to participate in the End of Life Option Act, which turned a year old in June.
Her website doesn’t even mention it. The reason: One of her two partners wants nothing to do with the law.
“I think she doesn’t want us to be known as the Los Gatos doctors of death,” Shade said, “but I feel so strongly about the law that even if there are repercussions, I’m not worried at all.”
Shade’s experience shows just how controversial the law remains nearly two years after it was passed on a mostly party-line vote, after one of the most emotional debates ever in the California Legislature.
In a state of 39 million residents — and more than 100,000 licensed physicians — just 173 California doctors wrote lethal prescriptions for 191 patients in the last half of 2016, according to the California Department of Public Health.
Of those who got prescriptions, 111 ingested the lethal drug and died. The overwhelming majority were white, college-educated, age 60 or older and had cancer.
Based on Oregon’s experience with its two-decade-old law, Compassion & Choices, a group that advocates nationally for aid-in-dying laws, had predicted that about 1,500 lethal prescriptions would be written in California during the law’s first year — and that about two-thirds of the medications would actually be ingested.
Bay Area physicians of all stripes — both those participating in the new law and those who vehemently object to it — point to a confluence of factors that might explain the relatively low number of Californians using the law.
Many physicians may be concerned about becoming stigmatized, while a strong palliative care and hospice system around the state may be providing an alternative to taking a fatal dose of drugs. And Latinos and Asian-Americans — who together make up 54 percent of the state’s population — may be shunning the law for religious and cultural reasons.
“I’m not surprised, but then it’s early, and with any new advent in medicine there will be a pickup period,” said state Sen. Bill Monning, D-Monterey.
Monning was one of three state legislators who championed the right-to-die law, which was signed by Gov. Jerry Brown in October 2015.
While some doctors don’t want to participate in the law for moral reasons, others might feel that taking on the responsibility of a dying patient may be too labor intensive, Monning said. The law’s strict reporting requirements also may be “above and beyond what a primary care physician may consider to be within the scope of their practice,” he said.
The legislation requires that patients must be at least 18 years old and mentally competent to make health care decisions — and that the lethal medication be self-administered. Two physicians must confirm a prognosis of six months or less to live, and a written and two oral requests must be made at least 15 days apart.
At Stanford Hospital, according to Dr. Stephanie Harman, co-chair of the ethics committee, the hospital is committed to finding a doctor who will write a lethal prescription if the patient’s own physician will not. But, she said, that sometimes creates a management challenge — not only in finding such a doctor but possibly asking him or her to replace the patient’s original doctor. Moreover, Harman noted, determining a patient’s prognosis is an inexact science.
As a result, said Stanford primary care physician Dr. Catherine Forest, “just like hospice, most people come to us late.”
“I don’t think that particularly has to do with the law. These are just profound issues about what people see are their options,” said Forest, who is participating in the law. “They may not even know they are terminal because nobody told them.”
Like Shade, many doctors who support the law aren’t exactly publicizing it. Others are participating in the law only at arm’s length: They’ll only consent to be the secondary, or “consulting,” doctors, freeing them from the moral and ethical decision of writing a lethal drug prescription.
The overwhelming number of California doctors have refused to participate in the law, but there are many doctors like Rollington Ferguson. The Oakland physician, who practices both internal medicine and cardiology, will not fill a lethal prescription — but said he would refer his patients to a doctor who will.
“There are doctors who perform abortions, and some who do not,” Ferguson has said. “It’s the same kind of situation, I think.”
Like other physicians who are willing to prescribe a lethal dose of drugs, Shade has alerted social workers, other physicians, including oncologists, and two local hospices that she is willing to work with patients who meet the law’s requirements.
“I cannot emphasize enough how grateful patients are to have peaceful control in the end of life,” said Shade, who said the alternative is often spending your last days on life support, or in a coma, with tubes running in and out of your body.
“Nobody gets to say goodbye, and that’s inhuman,” said Shade, who quickly added that if that’s the direction her patient wants to go, she will fully support it.
At Mission Hospice & Home Care in San Mateo, Dr. Gary Pasternak, one of the medical directors, said he and his team of doctors, nurses, social workers and spiritual counselors will work with those patients who want to use the law.
While physician aid-in-dying is a “very small part of what we do,” he said it’s been an adjustment for many hospice workers.
“People are all over the spectrum of emotion and their own moral sense about whether this is something that should be permissible or not,” said Pasternak, who added that no employee is required to care for patients who ask to use the law if it’s not consistent with the employee’s own values.
He said he’s been surprised by how “peaceful and dignified” the physician-assisted deaths have been and how committed the patients are to having control over their deaths.
“It’s important to remember that most physicians have not seen patients die this way,” he said. “You’re talking about basically death from a large quantity of medicine, and that is not what doctors do.”
Patients generally die within 30 minutes to an hour or so, he said, compared to the kind of death they might experience under palliative care that might require significant sedation for intractable pain. In that case, the patient might live for several days or even weeks.
But Pasternak noted that some patients lose their “window of opportunity” to use the law because their health declines so quickly toward the end that they are no longer mentally competent or able to self-administer or even swallow the drug.
In Berkeley, Dr. Lonny Shavelson — a primary care doctor who now specializes in helping patients access the law — said 30 percent to 50 percent of his patients who qualify cannot use the law because they aren’t mentally or physically capable by the time the 15-day waiting period is up.
“When somebody writes a law and one-third to 50 percent of the people who the law should apply to cannot use the law, then something is wrong with the law,’’ Shavelson said. “We should be looking at the best methods in physician aid-in-dying and saying, “How do we make this work better for the patient so they can have a better death?’’
For now, he noted, there are some ways of getting around that dilemma. Together with hospice staff, he can give patients steroids to help them get through the 15 days without losing capacity. That way, they can use the prescription, avoiding the prolonged path of incapacity that they have said they did not want.
“You can make the patient feel markedly better for the last few days,’’ Shavelson said.
At El Camino Hospital in Mountain View, Dr. Satya Chelamkuri, medical director of palliative care, said that since she started working there in March, no aid-in-dying prescriptions have been written.
Many El Camino doctors, she said, feel the law is “a little taboo,” though the hospital has said it is willing to support a patient in the process, as long as the medication is not ingested on site.
As part of its patient population, El Camino has many Chinese-American patients who Chelamkuri said are either unaware of or not comfortable using the law.
In her work there and at other San Jose hospitals, Dr. Chelamkuri has observed that some Asian-American immigrants, including Vietnamese, often feel that “prolonging their dying relatives’ lives — against all odds and nature — is their way of paying back to their loved ones,” she said.
Monning, too, noted that many Latinos, most of whom are Catholic, are unlikely to use the law because their church strongly opposes it.
Catholic-affiliated hospitals in California are not participating in the law, and federal law prevents Veterans Affairs hospitals from doing so.
At Hospice East Bay in Pleasant Hill, Dr. Sally Sample, the chief medical officer, believes the law has encouraged more people to enroll in hospice. Indeed, the state report on the law’s first six months showed that most people who used the law were already in hospice.
But Sample and her physician staff have decided they will not participate as prescribers, only as consulting physicians for patients.
“That’s as far as I can go,” said Sample, who still struggles with the law because she believes it interrupts an important part of dying.
“At the very end of life is a spiritual journey, and when that is taken away by having a sudden death, I think it’s a missed opportunity for that person’s soul,” Sample said. “It’s not a religious thing. It’s just what most of us in hospice believe.”
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