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hen Diane E. Meier met the 24-year-old patient, the young woman was curled on her side in a hospital bed, in too much pain to open her eyes. Her bloodstream was clogged with leukemia cells, making her gasp for breath if she tried to sit up.

She hadn’t slept in a week and couldn’t keep down food or the drugs needed to ready her body for a bone marrow transplant.

The woman’s hematologist had prescribed ibuprofen and Ty-lenol (her parents had told the hematologist about their son, a former substance abuser, and insisted that she not be given any-thing potentially addictive), but neither helped much, and the patient kept pressing the call button, pleading for something stronger. Exasperated, the hematologist brought in Meier, a physician-specialist in palliative care, to help manage the symptoms, which also included depression and spiritual angst.

Meier knew that it would take an opioid to relieve the pain, but first she had to explain to the woman’s parents that her symptoms were severe enough to cause real harm. During the six weeks the patient was in the hospital, members of a large palliative care team—Meier, the hospital chaplain, a nurse practitioner, a social worker, a massage therapist, a therapeutic yoga instructor and a psychologist—visited her several times a day to monitor symptoms, provide emotional and spiri-tual support, and control pain and anxiety with massage and breathing techniques as well as medication. “There’s no way her hematologist and other physicians could have spent the time we did with this patient and her family,” says Meier, direc-tor of the Center to Advance Palliative Care at Mount Sinai School of Medicine in New York City.

BY ANITA SLOMSKI // PHOTOGRAPHS BY HUGH KRETSCHMER

THE PROMISE OF PALLIATIVE CARE:Attending to patients’ emotional needs as well as their physical symptoms // Eliminating the choice between living longer or living better.

More Than Hand-HoldingThough the patient recovered after her bone marrow trans-

plant and is healthy today, the majority of those treated by pal-liative care physicians are chronically ill. The goal, Meier says, is “to make sure you live as well as possible with whatever life-threatening disease you have while getting treatment meant to cure you or prolong your life.” Palliative care specialists help patients control symptoms and address their nonmedical needs in a relationship that may last indefinitely.

When patients opt for palliative treatments, many fewer dollars are likely to be spent on their care, and that’s one reason hospitals and insurers have been quick to embrace this specialty. The 5% or so of Medicare patients who die each year account for almost 30% of the government program’s outlays, and costs are highest when deaths occur in the hospital—particularly in intensive care. But in a recent study of New York hospitals that have palliative care programs, per-admission expenditures for people who received palliative care were $6,900 lower than outlays for seriously ill patients who got more aggressive treat-ments. Those who had the benefit of palliative care spent less time in intensive care, underwent fewer expensive imaging studies and other tests, and had fewer drugs and other thera-pies that had little effect during the patients’ last days.

Perhaps the most stunning—and surprising—benefit: In a randomized, controlled trial at Massachusetts General Hospi-tal, people with metastatic lung cancer who received palliative care in addition to oncologic treatment not only saw their qual-ity of life improve but also lived almost a third longer than those who received only chemotherapy and radiation. That result was contrary to what almost everyone had expected, and it was par-ticularly notable in that many of those who received palliative

W

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care ultimately decided to end chemotherapy. So the presumed dilemma for patients—whether to live longer or better—may turn out not to be an either-or proposition.

P alliative care is often confused with hospice, which makes sense, considering that the very notion of pallia-tive care arose from the hospice movement. Hospice,

which got its start during the 1960s and ’70s, took the approach that when death is near, comfort is paramount, and palliative care developed as a means of ensuring that pain was treated and spiritual needs were ad-dressed. Then, in the mid-1980s, Cleveland Clinic recruited oncologist Declan Walsh from New York’s Memorial Sloan-Kettering Can-cer Center to incorporate hospice physicians’ palliative techniques in a new kind of hospital service. Walsh took as his model a program established at the Royal Victoria Hospital in Montreal some years earlier, and by 1987 he had brought together caregivers from wide-ranging disciplines to start the first U.S. program—a development not everyone welcomed.

“There was significant hostility from some oncologists, who saw palliative care as send-ing a message that medicine was giving up the fight to cure cancer,” says Walsh, the Harry R. Horvitz Chair in Palliative Medicine at Cleveland Clinic. Others dismissed his efforts as “hand-holding.” Yet despite such opposition, pallia-tive care has grown steadily since 1991, when Walsh launched a fellowship in the specialty and had just one resident apply.

As Walsh was starting his program, Medicare was instituting rules for reimbursing hospice care that indirectly lent support to the new specialty. The government began requiring physi-cians to certify that a patient was likely to live no more than six months, and he or she had to agree to give up insurance coverage for life-sustaining treatments. These provisions were designed to reserve the Medicare hospice benefit for those who were clearly dying and to keep patients from receiving expensive, aggressive treatment while also taking advantage of hospice care. But deciding to end life-prolonging treatment can be agonizing for patients and their physicians, and it’s one reason that even today, the median time in hospice is just 21

days. “Physicians often don’t refer patients to hospice until the very end of their lives because they can’t reconcile the quest for finding a cure with abandoning treatment,” Walsh says.

But physicians are often less hesitant to bring in a palliative care team that can help relieve symptoms while aggressive treat-ment continues. Especially for palliative care doctors who don’t practice in hospice—and fewer than half of the specialty’s 2,887 physicians do—the ideal time to get involved in a patient’s care is when a life-threatening disease is diagnosed, and that can be years before the end stage during which the patient might opt for hospice care. “Palliative care is appropriate whenever it can help,” says R. Sean Morrison, a professor of palliative care, geri-atrics and medicine at Mount Sinai School of Medicine. “Oth-erwise we are back to that either-or box of hospice or aggressive care, and that leaves out a huge group of people.”

Palliative care also received a boost from more than $300 million in funding that the Robert Wood Johnson Foundation and the Open Society Institute provided between 1990 and 2006. That helped establish today’s 82 palliative care fellowship programs, and in 2006 the American Board of Medical Special-ties officially recognized palliative medicine as a subspecialty.

Attached largely to hospitals, palliative care specialists train medical and nursing students, conduct research on managing symptoms and provide care to patients with complex needs. There’s considerable ground to cover, because many doctors lack most palliative skills. Studies have shown that more than 70% of cancer survivors live with significant pain, and fewer than 50% said they had received adequate relief.

Doctors can be unwittingly blind to their patients’ suffer-ing. What’s more, in a 15-minute appointment with an oncolo-gist, say, a patient may not bring up distressing symptoms if the doctor doesn’t ask. “Patients can see there are limits on

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their physicians’ time and attention, and they’d rather keep the focus on treatment,” Meier says. But whereas most oncol-ogists bill for each visit, palliative care physicians are typically paid a salary by their hospital and thus can spend much more time with patients and their families.

P alliative care specialists also aim to change how physi-cians talk to patients with life-threatening diseases. What occurs in those conversations—or doesn’t—

can strongly influence treatment choices and quality of life. “We know that with cancer patients, addressing concerns early in treatment may reduce anxiety and depression,” says James A. Tulsky, director of the Duke Center for Palliative Care. But when there’s a lack of emotional support from physicians, patients may accept treatment they don’t really want. “When a patient asks, ‘Isn’t there anything else you can do?’ you can usually offer a clinical trial or another drug,

“Palliative care is appropriate whenever it can help. Otherwise we are back to that either-or box of hospice or aggressive care, and that leaves out a huge group of people.”

even though the chance of benefit is next to nil,” he says. A more therapeutic approach may be to acknowledge a pa-tient’s fear of dying and let him know you’ll be right there with him for the duration, he says.

Indeed, the offer to try yet another treatment may have more to do with the physician than with the patient’s needs. Meier recalls one oncologist who suggested injecting chemo-therapy directly into a patient’s brain to control the expand-ing metastases from her lung cancer. Why? “It’s not going to help her, but I don’t want her to think I’m abandoning her,” the doctor told Meier. “It was the only way he knew to signal his commitment to her,” she says. “He had no other arrow in his quiver.” After the discussion with Meier, the oncologist admitted to the patient that the treatment was unlikely to do any good and would probably make her miserable.

Most seriously ill people want to know their prognosis but very often get little real information, so many expect to live much longer than is likely. Yet 72% of cancer patients said they wanted their oncologist to tell them how much time they had to live, according to a study by Holly G. Prigerson, director of the Center for Psycho-Oncology and Palliative Care Research at Dana-Farber Cancer Institute in Boston. And while only about one in four of the 332 terminally ill patients in the study had talked with a doctor about end-of-life care, those who had that conversation were not significantly more likely to report feeling sad, depressed, terrified or more worried afterward—responses that many doctors fear will result when people hear they don’t have long to live. Instead, talking about it made patients more likely to accept their illness as terminal, Prigerson says, and to ask for “comfort” care.

In most cases, honest talk about prognosis and options for end-of-life care helps not only the patient but also

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Prigerson says. What’s more, adds Mark David Siegel, direc-tor of medical critical care at Yale–New Haven Hospital, “too many people admitted to the ICU can’t be helped. ICU care is very invasive and not a good way for patients to die, especially those who are very old and suffering from advanced dementia and terminal illness.”

T hat could change as doctors and patients see more evi-dence of the benefits of palliative care. The MGH ran-domized, controlled trial, conducted by Vicki Jackson,

chief of palliative care, and Jennifer S. Temel, clinical director of thoracic oncology, may emerge as a research landmark. The trial involved 151 patients who all had newly diagnosed metastatic non-small-cell lung cancer, a disease with an average life expec-tancy of just under a year. Half the patients received palliative care along with standard cancer treatments from their oncolo-gists, while the other half received oncologic therapies alone. At the outset, all of the patients were asked to fill out question-naires that probed their emotional and social well-being and how well their symptoms were being controlled. About one in four participants was depressed, and a third reported anxiety.

Twelve weeks into the trial, the proportion of patients with depression had dropped to 16% in the palliative care arm of the study but had risen to 38% in the control group. “Both groups were prescribed the same antidepressants, so the ef-fect wasn’t related to medication use,” says Temel, who cred-its the emotional support that the palliative care patients received. Those who received palliative care were also more likely to end aggressive treatment, with two-thirds opting not to get chemotherapy during the final two weeks of life. But the most noteworthy result was that patients receiving pal-liative care lived longer than those who hadn’t—an average of 11.6 months, compared with an average of 8.9 months for

family members. “The patient’s quality of life at the end direct-ly affects the bereavement of family members,” Prigerson says. If a loved one dies in an ICU, family members are five times as likely to have post-traumatic stress syndrome six months later compared with family members of those who died at home with hospice. And a third of next of kin suffer at least one psychiatric disorder after an ICU death. “They have these gruesome images of loved ones wasting away they can’t erase,”

The goal of palliative care—to relieve physical and psychological distress—is the same for pediatric patients as it is for adults. But several factors complicate treatments for children. “We often have to deal with considerable uncer-tainties in treating children because we don’t have the same amount of information about pediatric diseases as we do for adults who are dying,” says Patricia O’Malley, medical direc-tor of the pediatric palliative care service at MassGeneral for Children. “And kids may not report their pain because they think it will add to their family’s distress, or they may feel their

pain is a punishment because they have done something wrong.”

It’s also complicated to get a true picture of the severity of a child’s symptoms when you have to depend on a parent’s interpretation. Joanne Wolfe, director of pediatric pallia-tive care at Dana-Farber Cancer Institute and Children’s Hospital, is analyzing the results of a trial in which children with cancer used a tablet computer’s touch screen to answer questions about how they felt. Prior to weekly clinic appointments, nurses, physicians and social workers got reports of children’s answers, and

everyone on a patient’s care team received e-mail alerts when the child recorded signifi-cant symptoms. The hope, Wolfe says, is that oncologists will become more attuned to easing symptoms and improving quality of life if they get frequent, direct feedback.

“From the kids’ perspectives, we found there was a high prevalence of pain and fatigue,” she adds. In one case, a high school senior with cancer wrote that she didn’t know how she’d find the energy to cross the stage at graduation in a few days. “We got that e-mail and were able to treat her so she could graduate.”

Young and Deathly Ill //Delivering effective palliative care to children poses special challenges.

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those in the control group. “We were just hoping that our in-tervention would improve quality of life for patients,” Jackson says. “We weren’t expecting to see a survival benefit.”

Survival may have improved for several reasons, Temel says. “We clearly showed that people receiving early palliative care make different choices about their care at the end of life, and having a better quality of life and less depression may have lengthened their lives,” she notes. Ending toxic chemotherapy may have helped too, Jackson says.

At the same time, receiving early palliative care may encour-age patients to stick with treatments longer, while they’re still potentially therapeutic. “If depression is treated and symptoms are controlled, patients are much less likely to skip that chemo-therapy appointment,” Morrison says. “And if we can coordi-nate care so they are not making visits to multiple specialists, patients can spend more time doing what they want to do.”

D espite the apparent advantages of palliative care, there are several hurdles to wider adoption. One is that while palliative services are increasingly available—offered by

8 in 10 hospitals with at least 300 beds and by 59% of those with 50 to 300 beds—many people who could benefit, particularly during the early stages of serious diseases, aren’t hospitalized and thus don’t have an initial consultation with a specialist.

There’s also the matter of geography, which seems to play a major role in determining whether patients receive no-holds-barred end-of-life care. According to the Dartmouth Atlas Project, almost half the deaths of chronically ill patients in Manhattan happened in hospitals, compared with just 12% in Minot, N.D., and 19% in Fort Lauderdale.

Race and culture also play a part. Studies have shown that African Americans and members of other minority popula-tions often think they’ve been denied access to the best care throughout their life, Tulsky says, so they tend to be wary when someone recommends less aggressive treatment. In Prigerson’s study of cancer patients, 45% of blacks and 34% of Hispanics wanted life-prolonging care even when they knew they had only

a few days to live, compared with 14% of whites. “And in some cultures, the notion of struggling when you’re confronted with adversity is considered positive,” Prigerson says.

People who rely on religious beliefs in coping with serious illness also often opt for intensive treatment during a disease’s final stages. “They feel their survival is an issue for God alone, and they basically discount everything their doctors say,” ex-plains Prigerson, who found that 17% of very religious individu-als wanted intensive care during the final week of life, compared with 4% of those who were less religious.

To palliative care’s advocates, converting nonbelievers is it-self almost a religious quest. “Palliative care is better care in every way you can think of,” Meier says. “But the public has to demand it.” The most important thing, adds Tulsky, is for patients to learn that palliative care physicians will be their advocates no matter what. “I don’t have a problem with some-one who chooses intensive care right up until the last minute of life,” he says. “But many patients push ahead with very ag-gressive treatment because it is the only way they know how to cope—and it’s the only thing they’ve been offered. If they have a chance to choose treatment that matches their values and preferences, they often choose differently.”

DOSSIER1. Palliative Care: Transforming the Care of Serious Illness, edited by

Diane E. Meier, Stephen L. Isaacs and Robert G. Hughes (Jossey-Bass, 2010). This compilation of 25 articles explores all aspects of caring for those with advanced illness, including pain management, cross-cultural sensitivities, and legal and ethical issues.

2. “The Ironic Business Case for Chronic Care in the Acute Care Setting,” by Albert L. Siu et al., Health Affairs, January/February 2009. The authors argue that palliative care programs will enhance hospitals’ bottom lines during a time of increasing costs and declining reimbursements while improving care for the seriously ill.

3. “Early Palliative Care for Patients With Metastatic Non-Small-Cell Lung Cancer,” by Jennifer S. Temel et al., The New England Journal of Medicine, Aug. 19, 2010. In a landmark study, patients with advanced lung cancer who received palliative care lived better and longer than those who underwent aggressive end-of-life treatment.

While palliative services are increasingly available, many people who could benefit aren’t hospitalized and thus don’t have an initial consultation with a specialist.