Tuesday, October 9, 2007

The Comfort Connection

The Comfort Connection

By Joanne Kenen, September & October 2007

Dr. Diane Meier is quietly leading a revolution to treat patients (and their families, too) as living, breathing, feeling individuals. And why is that so shocking?

When a loved one dies, the first thing you usually receive from a doctor is a bill. When a patient of Diane Meier, M.D., dies, the family receives a call or a note.

“She was with me when my wife died at home,” says Bert Gold, of New York City, still missing Sylvia, his wife of 57 years. “She took me into the living room and put her arms around me and started to cry. She thanked me for letting her take care of Sylvia. Imagine.”

Meier, 55, of the Mount Sinai School of Medicine in New York City, is one of the leading exponents of a new and growing discipline known as palliative care. Palliative care means soothing the symptoms of a disease, regardless of whether a patient is seeking a cure. It’s a concept that’s totally transforming the way doctors and hospitals treat seriously ill patients. The idea of easing pain and improving the quality of a patient’s life may not seem radical, but classic medical training focuses on attacking the disease. Most doctors simply don’t have time to be supersensitive Marcus Welbys checking up on patients to see how they feel. Even if they do have the time, they lack the advanced training of palliative-care doctors and nurses to ease symptoms such as anxiety, pain, or severe nausea. Most are better equipped to deal with microorganisms than matters of comfort.

When people first hear about palliative care, they often confuse it with hospice care. It’s not. Hospice focuses on terminally ill patients: people who no longer seek treatments to cure them and expect to live about six months or less. Palliative-care teams—consisting of everyone from social workers to physical therapists—can follow patients for days, months, or years.

Thanks in large part to the training and outreach programs Meier runs as the head of the Center to Advance Palliative Care (CAPC) in New York City, the number of hospitals with palliative-care programs has nearly doubled, from 632 in 2000 to 1,240 in 2005. Palliative care has the potential to change the way doctors and nurses address pain and emotional distress—not to mention how they help patients and families sort through their choices as life nears its end.

Bert Gold is doing pretty well for a man who recently turned 91. A retired professor of social work, he lives at home. But he is frail. He takes a lot of medicines. He falls sometimes. He lost a big toe five years ago and still deals with pain and an awkward gait.

Bert visits Meier in her office today before going back to the foot surgeon, and Meier spends more than an hour with him—yes, an hour—reviewing his symptoms, his diet, his medications, his mood. Open or stubborn wounds can be dangerous for elderly patients, but Meier, who has worked with Bert for 12 years, also worries that the pain has isolated him, kept him home watching television instead of going to the Y for his regular bridge game.

“Are you having fun?” she asks.

“No,” he says, frowning.

“You’re not?”

“No. I’m not depressed, but I’m not having fun.”

Meier keeps listening. She offers some advice, more in the spirit of a friend than a doctor. She gently reminds him that even if he doesn’t like his wheelchair, it can get him out to a movie now and then. They talk about his diet, good-naturedly negotiating over...prunes. Though he flat out refuses to eat them for breakfast, he agrees to have them at lunch. Bert smiles. He has been listened to by a doctor who took the time to treat him not as a collection of symptoms, but as a person who deserves to get the best he can out of life, even at 91.

Meier believes strongly that palliative care should not be the “death team,” and she sees patients early in the course of a disease. On one recent day, two palliative-care nurses at Mount Sinai were treating a French-speaking African woman in her 30s dying of AIDS, and a man in his 80s with cancers of the skin, prostate, bladder, and pancreas, who now had relentless hiccups from the march of his tumors through his belly.

“Sometimes something like that—hiccups—will get us in the door, to then say, ‘What else is going on? How’s life when you’re at home and not in the hospital,’ ” says Sue McHugh-Salera, a palliative-care nurse at Mount Sinai.

Which brings us to another of palliative care’s radical-but-shouldn’t-be concepts: family meetings. That’s right—actually sitting down with patients and their families to discuss the good, the bad, and the scary. Ira Byock, M.D., a longtime leader in hospice care who now heads palliative care at Dartmouth, recalls a man who had been languishing in the ICU for months. The patient was “stable,” but no one had helped his family see the chasm between the clinical realities and their hopes for a miracle. So the man’s doctor called in the palliative-care team, and Byock set up family meetings to discuss the patient’s condition and the family’s expectations.

“We couldn’t change the fact that he was not going to survive,” says Byock. “But when he did die, his family’s sadness—as deep as it was—was free of the doubts, the ‘could haves’ and ‘should haves,’ that often complicate grief.”

Although most of the programs, such as Meier’s, are consultant teams, moving through the hospitals and clinics, a few have dedicated inpatient units, such as the 11-bed section at the Massey Cancer Center at Virginia Commonwealth University in Richmond. It’s peaceful, without the jarring bustle of a typical hospital floor. Families have their own lounge, with a TV, a computer, games for the kids, and cookie dough in the fridge. Some patients will go home when their symptoms are under control. Some will shift to home hospice. Others will die on the unit, with a lot of hands-on care and fine-tuning of medications. All will have received more focus on their comfort than they would get in a traditional hospital environment.

Meier’s goal is to improve the treatment of seriously ill patients, but she sells hospitals on the idea that palliative care can cut costs. CAPC estimates that hospitals can save up to $3,000 per patient, in part by moving people out of the ICU sooner, avoiding a flurry of tests when it’s too late, and slowing the revolving door between nursing homes and emergency rooms.

But not everyone is sold on the benefits. Some health-policy experts are skeptical of the savings (they want more detailed data); others wonder if palliative care should even be its own entity, or whether all physicians should provide the caring, coordination, and communication that Meier gives to her patients. Meier agrees—to a point:

“It’s like saying, ‘Shouldn’t cardiology not have to be there; shouldn’t every doctor know how to handle hypertension, congestive heart failure, angina?’ Of course every doctor should. But nobody would argue that we don’t need specialists to handle the more complex aspects of cardiology.”

Palliative-care specialists are needed, she says, to step in and manage the challenging cases that other doctors don’t have the skills, or perhaps the time, to manage themselves. “It’s the rare primary care practitioner who can do repeated 90-minute family meetings, because they’ve got 50 patients in the waiting room,” she says.

So Meier keeps pushing for more programs. Thirty percent of U.S. hospitals and 70 percent of teaching hospitals now offer palliative care. The more hospitals buy into the philosophy, she says, the better it will be for patients. Too many are stuck in a medical nowhere-land, forced to choose between comfort care and emotional support in a hospice—or a chance to keep fighting their illness. “It’s not human nature to accept death and agree to give up on life,” says Meier. With palliative care, we don’t have to.

Joanne Kenen is a health writer in Washington, D.C.

Learn more about palliative care at www.getpalliativecare.org.

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