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As Assisted Suicide Becomes Legal, Doctors Wrestle with Power to End Life

The California law permitting doctor-assisted suicide will soon take effect, forcing physicians to make their own life-or-death decisions.

 

Life-or-death questions are inherently excruciating. And for the state’s doctors they just became even more complicated.

“It’s the hardest question in the medical profession,” Barbara Koenig says. “How do we deal with care at the end of life?” Koenig is a medical anthropologist who specializes in biomedical ethics at UC San Francisco, which means that she analyzes how new treatments and technologies affect patients and their care providers. She consulted on studies in Oregon when that state passed its aid-in-dying law in 1997, and she recently organized a UCSF conference of palliative care experts, hospice workers, and chaplains in response to California’s End of Life Option Act, signed last October by Governor Jerry Brown.

California doctors, like their colleagues in four other states, will this year be able to legally assent when terminally ill patients ask for help in dying. But they don’t have to: The law doesn’t mandate doctors to assist with death; they must each decide what their answer will be. “I approach this with sadness,” Koenig says of the legislation. “I worry about how it will symbolically affect the role of healer.”

Doctors struggling with this very personal and political decision aren’t able to avail themselves of much in the way of guidance: The California Medical Association, which represents more than 41,000 doctors throughout the state, has taken a neutral stance on the law. Doctors fret that their opinion—whether in favor of the law or against it—will put them at odds with the hospitals that employ them. California hospitals and medical centers are still actively debating their policies, but under the law, they may prohibit staff from providing aid-in-dying and discipline and fire doctors who don’t toe the company line. A spokesperson for the UC Office of the President reports that its medical centers are actively discussing the legislation and that each will likely be allowed to determine its own policy. Koenig’s conference at UCSF sparked policy discussions, but those policies may not be finalized for some time.

Although the law won’t take effect until later this year, and doctors aren’t yet receiving marching orders from their employers, they are already fielding requests from terminally ill patients for Seconal, the drug of choice for ending life. “The other week I had a patient with very advanced cancer; there was nothing we could do to save her,” says Dr. Shervin Nourparvar, a hospitalist in Orange County. “I had this conversation with her husband and asked if her doctors had talked about her wishes and if she had an advance directive. The first words out of his mouth were ‘The end-of-life option. That’s what we’re going to do.’ I was dumbfounded.”

Nourparvar is uneasy about aid-in-dying—he does not want to provide prescriptions, he says, but he also views himself as a patients’ rights advocate and is uncomfortable overruling their desires. He worries about the consequences if patients are unaware of their options or consider their existence a burden to their family. How can he be sure, he wonders, that they won’t change their mind if they live just a bit longer—as patients often do following less extreme procedures? Instead of providing a prescription, Nourparvar prefers to educate his patients about hospice care, an often-overlooked service that offers comfort and pain management to the terminally ill.

Dr. BJ Miller, executive director of Zen Hospice Project, a live-in guesthouse in Hayes Valley, agrees that terminal patients often aren’t made aware of programs like his. “I represent an organization entirely devoted to helping people to ease into their death, to find comfort and solace,” Miller says. “In general, that’s not consistent with dying prematurely.” Speaking for himself, however, in his role as a palliative care physician at UCSF, Miller welcomes the new law. “I believe,” he says, “that there are some states worse than death.”
 

As California medical facilities establish aid-in-dying policies, many doctors and patients are seeking answers from Oregon, where physician-assisted death has been legal for more than 18 years. (Former East Bay resident Brittany Maynard, whose advocacy helped spur California’s law, moved to Oregon to end her life in 2014 after receiving a diagnosis of terminal brain cancer.) Data collected by the Oregon Health Authority suggest that doctors who support the legislation are a minority, which forces terminally ill patients to seek out a willing physician. (To wit: In 2014, a single Oregon doctor wrote 12 of the year’s 155 prescriptions for fatal medication.)

Dr. David Grube estimates that he has prescribed life-ending medication or served as a secondary prescriber for 30 patients under Oregon’s Death with Dignity Law. He could not, however, fulfill his own father’s dying request. Grube’s father was 95 years old and only two weeks from death—blind, deaf, and suffering—when he asked about a life-ending prescription. But it was too late to help, Grube says. The waiting period can extend to months—even if Grube had prescribed the medication, it wouldn’t have arrived in time. He wonders why his father, a World War II veteran, waited so long. Maybe he accepted his pain, Grube muses, because “in that generation, they didn’t really talk about choices. He lived through the depression and really knew what being deprived of pleasure was.”

Grube describes his father’s last days as miserable. By comparison, the deaths of his patients who chose aid-in-dying have been, in his words, “beautiful”: gentle and peaceful, surrounded by music and love and family. That, Grube says, is the way to go.

As of 2014, 1,327 Oregon residents—most with cancer or ALS—had received prescriptions for life-ending medication; 859 patients had used it to die (the discrepancy between prescriptions and associated deaths occurs because some patients die before filling the prescription and others decide not to follow through). The number of patients seeking prescriptions has climbed steadily, from just 24 in 1998 to 155 in 2014. 

Grube states that those prescriptions were not written cavalierly. “It is the ultimate prescription that you would write,” he says. But witnessing the suffering of his patients makes his decision less tormenting. “You’ve taken care of this person for years,” he says. “She has no hair. She’s had her breasts removed. If you’re going to die no matter what, the least we can do is listen to what you want.”
 

San Francisco is already the state’s leader in the hospice movement, according to Dr. Steve Pantilat, founding director of UCSF’s palliative care program. “If you look at hospitals across the state, many small hospitals still don’t offer palliative care services,” he says.

Even so, some Bay Area doctors have vocally advocated for the right to go further: Robert Brody, a doctor at San Francisco General Hospital, sued the city and state last year for legal permission to furnish aid-in-dying to his patients. An existing reputation for providing end-of-life care—and the city’s connection to Brittany Maynard’s highly publicized story—could eventually make San Francisco a destination for patients seeking aid-in-dying. This disturbs Koenig, Pantilat’s colleague at UCSF, who is concerned that being known for aid-in-dying practitioners could attract medical tourism: “Come to us!” she quips. “We do death best!”

Dr. Mike Turbow, who recently retired from his oncology practice in Palo Alto after almost 40 years, testified before the state senate in favor of the End of Life Option Act. His wife has nicknamed him Dr. Death, teasing him about his propensity to bring up the subject at dinner parties. But Turbow, who describes himself as an optimist, says that aid-in-dying—for which he has long advocated—liberated his patients from their fears about death.

Turbow, who intimates that he skirted the rules for decades to ease the deaths of terminally ill patients, was not alone: According to Compassion & Choices, an organization that campaigned for the End of Life Option Act and promoted Maynard’s story, a number of doctors took a work-around approach to aid-in-dying before it was legal. Now they can do overtly what they were already doing. Turbow estimates that every year he saw two or three cancer patients who were seeking aid-in-dying. “The discussion would take place with just two of us in the room, no family members in the room,” he says. “I would have a procedure similar to what it is under the law. Medications would be prescribed over a period of time. It’s just a form of sleeping medication. It would take two or three months” to accumulate a sufficient stockpile.

“My patients taught me, once they got over the fear and denial and depression, that they appreciated each moment as it came and thought about what was most meaningful in life to them,” Turbow continues. Helping patients die peacefully, he found, can be deeply meaningful: “Providing a comfortable death and having the family accept the death is a challenge, and I found it much more rewarding than just giving a treatment,” he explains.

But doctors who oppose the new law argue that they should be treating existential pain, not acquiescing to it. Dr. Vincent Nguyen, a geriatrician and palliative care specialist in Newport Beach, believes that patients’ fear and depression around their impending death can be managed through treatment. Governor Jerry Brown’s decision to sign the End of Life Option Act came as a nasty shock to Nguyen: “It broke my heart,” he recalls. “When people ask for suicide, it’s a cry for help. Our role is to figure out how to help these people.” When patients come to him seeking aid-in-dying—and a few already have—Nguyen has a premeditated response: “I would say, ‘Tell me why you ask me to do that.’ I would say, ‘I’m so sorry. I wish things were different.’ I can’t do that.”

UCSF’s Pantilat predicts that doctors will begin to have aid-in-dying discussions with more and more patients as the law goes into effect—and says that the ability to do so is a gift. “I like having those conversations,” he says. “It’s satisfying because it gets to the essence of what it means to be human. It brings a human interaction between doctor and patient, and it reminds us all that life is precious and that how we spend our time really matters. It’s sad—don’t get me wrong. They’re not happy conversations. But they are meaningful.” 


Originally published in the February issue of
San Francisco

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