End-of-Life Laws Only Accentuate Need For Palliative Care, Providers Say

hospice palliativeLOS ANGELES — More times than she can count, Dr. Carin van Zyl has heard terminally ill patients beg to die. They tell her they can’t handle the pain, that the nausea is unbearable and the anxiety overwhelming.

If she were in the same situation, she too would want life-ending medication, even though she doubts she would ever take it. “I would want an escape hatch,” she said.

Earlier this month, California law became the fifth — and largest — state to allow physicians to prescribe lethal medications to certain patients who ask for it.

Yet van Zyl can’t see herself as one of those doctors.

“This is my life’s work, to relieve suffering,” said van Zyl, head of palliative care medicine at Los Angeles County-USC Medical Center. To her, that does not mean cutting short a life.

“I can’t imagine pulling the trigger,” she said.

Weeks after California Gov. Jerry Brown signed the “end-of-life option act” into law, palliative care physicians like van Zyl are trying to come to terms with what it means for them and their terminally ill patients.

It’s not just a question of whether they support aid-in-dying or personally would ever help end a life. Palliative care doctors say the law underscores the need to raise awareness among doctors and patients about what they do and to expand access to high-quality programs.

Contrary to some patients’ fears, they say, palliative care doctors are not there to hasten death. Their job is to help seriously ill people get relief from symptoms and stress and to improve quality of life for them and their families, regardless of how long the patients have to live.

The California law should be a “wake-up” call because it shows “how terrified patients are of what they will experience at the end of life,” said Dr. R. Sean Morrison, professor of geriatrics and palliative care medicine at Mt. Sinai’s Icahn School of Medicine in New York.

Morrison said that once patients who want to hasten their death get their symptoms controlled and their spiritual needs addressed, the overwhelming majority want to keep living.

“Their choice shouldn’t be an assisted death or living with intractable suffering,” Morrison said. “That’s what laws allowing assisted suicide, in the absence of palliative care, present as a choice to patients.”

Palliative care has become more widespread in recent years, and more doctors, nurses and social workers are being trained in how to provide it. In addition, recent legislation in California requires that Medi-Cal managed care plans ensure access to programs.

But gaps remain. A recent report by the California HealthCare Foundation showed that residents in 22 of 58 California counties don’t have access to community-based palliative care, and those in 19 counties don’t have access to in-patient programs. Foundation researchers also found recently that specialists are in short supply and that there is no reliable way to pay for such care.

Dr. Ira Byock, a palliative care expert who opposed the California law, said its passage makes it more important than ever that all doctors receive more education on how to treat symptoms in seriously ill patients and talk with patients about what they want in their final months.

“As hard as illness and dying are … people still have the capacity to experience the sense of well-being,” said Byock, who heads the Providence Institute for Human Caring in Torrance, Calif.

Without palliative care programs, Byock and others say those conversations don’t always take place. Only about 17 percent of patients have had end-of-life discussions with their doctors, though about 90 percent believe doctors should be doing so, according to a recent poll by the Kaiser Family Foundation. (KHN is an editorially independent program of the foundation.) In addition, research out of the Mayo Clinic found that only 12 percent of doctors had yearly end-of-life discussions with heart failure patients, and about 30 percent of the physicians had “little confidence” doing so.

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