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Easing life's final choices

Palliative care is poorly understood, but the doctors who practice it believe it is good medicine.

December 18, 2010|By Thomas Curwen, Los Angeles Times
  • Edith O'Neil-Page comforts Dixie Flynn as David Wallenstein examines her husband, Elvin.
Edith O'Neil-Page comforts Dixie Flynn as David Wallenstein examines… (Liz O. Baylen / Los Angeles…)

Elvin Flynn is a dying man, but no one here is about to deprive him of his chances to live. He lies in a hospital bed on the seventh floor of the Ronald Reagan UCLA Medical Center, a fungal infection threatening his central nervous system.

He's already on a rigorous regimen of antibiotics. More surgery is an option but after three operations, he says he's had enough. There's the hyperbaric chamber; a concentrated dose of oxygen might help.

His doctors believe the odds are long. His condition is complicated by a disease in his bone marrow, and they're waiting to find out what Flynn, 78, and his wife, Dixie, want to do.

The couple is reluctant to have this conversation. To say no to further treatment means that death is imminent. To say yes means living longer in the limbo of the hospital, no positive outcome guaranteed.

David Wallenstein would like to help. He is a specialist in palliative care, a field that lies between curing disease and entering hospice, a poorly understood and slowly evolving discipline of healthcare today.

Its practitioners are like other physicians. They run clinics, offer consultations but are skilled in leading discussions other doctors avoid. They are not shy about addressing the limitations of treatment. Nor are they averse to talking about the end of life.

"You are the tour guide to the Valley of the Shadow of Death, and as that guide, you have to carry the baggage, point out the stony road and suggest possible alternatives," says Judith Ford, who worked with Wallenstein before returning to England in 2006 to become a math teacher. Ford headed the palliative care program at UCLA for nearly six years.

Wallenstein is more matter-of-fact. "My job is to convince patients that I have something of benefit to them when they may feel there is absolutely no reason in the world to trust a physician," he says.

Today he is nervous about meeting Flynn, but it's always been this way. Even before palliative care was associated with "death panels" during the recent healthcare debate, he could see patients tense when he introduced himself.

They assume he has been sent to restrict their care, so he begins asking about pain and symptoms, an introduction that often leads to a conversation about the patient's goals for treatment. He isn't about to limit anyone's choices. He just wants patients like Flynn — those who have been fighting disease for so long that all they know is the fight — to realize all of their options.

Sometimes there is more to life than fighting death.

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Black circles rim Flynn's eyes, the emergence of necrotic tissue from the infection. His nose is partly covered by a bandage. To fight the infection, surgeons removed his septum, part of his sinuses and palate.

Wallenstein introduces himself. Dixie is at lunch. The doctor pulls up a chair and asks Flynn about his condition. The patient's answer is candid and to the point.

Six years ago he was diagnosed with myelodysplastic syndrome, a leukemia-like disease in his bone marrow that has made the recent infection so difficult to cure. He didn't expect to live this long and suspects that he hasn't much time left.

After a decade practicing palliative medicine, Wallenstein, 53, has seen a range of reactions from patients with terminal diseases. Some have come to terms with their illnesses. Some are terrified. Others are tired, even depressed, and anticipate the end. Others are fighters, willing to pursue treatment through cycles of remission and relapse, no matter the cost.

Last August palliative care received a boost when the New England Journal of Medicine published a study showing that early palliative intervention among some cancer patients improved their quality of life and led to longer survival rates.

The journal also published an editorial with a surprisingly simple message: "… reducing patients' misery may help them live longer." But the editors admitted to the challenge that these specialists face in their practice. Most physicians "tend to perceive palliative care as … what we do when there is nothing more that we can do."

Even with evidence that palliative care reduces costs and avoids unwanted and futile intensive care, the specialty is undervalued. Its doctors see patients at the request of the primary physician, who can reject their recommendations, and compensating doctors for leading end-of-life discussions is complicated.

"Healthcare reimbursement tends to favor high-tech and procedure orientations like surgery and endoscopy over the less dramatic like spending time talking," says Thomas Strouse, a colleague of Wallenstein's at UCLA. It is a situation, Strouse believes, reflective of "a society not quite knowing what to do with the activity of sitting with a patient and family and identifying goals of care."

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