Palliative care is traditionally aimed at the terminally ill. But it should also treat sufferers of chronic disease, says Ann M. Berger of the National Institutes of Health
October 2002 issue
By Bob Kirsch
Massive textbooks, assorted journals, stuffed binders, miscellaneous
folders and neatly framed family photos vie for shelf space in Ann M. Berger's
office at the Warren Grant Magnuson Clinical Center of the National Institutes
of Health. They would be fairly typical accoutrements of a physician's
office-- except for the 20 or so oversize, flouncy straw hats and the tea
cart loaded with cups and saucers.
To Berger, these are medical tools, albeit ones for minds and moods. The hats and tea are brought out when doctors feel that a patient, or the family of a patient, needs a lift. Such a party is not given casually. It is a specific intervention, one that Berger instituted when she founded the palliative care service here.
Palliative care is the branch of medicine that addresses symptoms-- both the physical, such as nausea and insomnia, and the psychological, such as worry and depression. As the 43-year-old Berger defines it, " palliative care is a combination of active and compassionate therapies that is primarily focused on the physical, psychological, social and spiritual suffering of the patient, family and caregiver." It begins, she says, at diagnosis and should be administered throughout the course of the disease.
Berger had an early, firsthand understanding of the need for palliative care. During the summer after her 14th birthday, she watched her grandfather, to whom she was close, die of bladder cancer. She witnessed the confused, ineffectual way her family absorbed the impact of the illness and learned how the effects of disease can ricochet among family members and back to the patient. She carried those lessons throughout her training as a nurse and on to medical school.
Berger arrived on the scene at just the right moment. By the 1980s the hospice care movement was gathering momentum, making great strides in addressing the multitudinous needs of dying patients. At the same time, some physicians specializing in the care of cancer cases were focusing on improving quality of life through better management of physical and psychological symptoms. Researchers were documenting that, for example, moderate to severe pain affects one in three patients being treated for cancer and between 60 and 90 percent of those with advanced disease. And yet pain management was being underutilized worldwide, in part because of the hesitance of many physicians to prescribe morphine and related painkillers.
Berger realized that she wanted to work in this field when she was in the middle of a post- medical school fellowship at the Yale University School of Medicine. In 1992 she volunteered to found the palliative care service at Yale, and within three months she was invited to join the faculty. Since then she has founded palliative care services at 40 long-term-care facilities.
Berger and other advocates want palliative care to be more comprehensive than its traditional focus on terminally ill cancer patients. It should tackle symptoms that affect well-being-- such as hair loss, drowsiness, anxiety, irritability and side effects of medication, including sexual dysfunction. Berger's perspective is that any patient with a chronic illness-- especially those that are life-threatening, such as diabetes, emphysema, multiple sclerosis and cardiovascular disease-- may require palliative care, which should be pursued in tandem with curative care. People with advanced heart disease can experience such severe shortness of breath that they can't even walk to their next-door neighbor's house; they may become as severely depressed and anxious as terminally ill patients.
At the clinical center, candidates for palliative care are first assessed to see how the sum of all the symptoms and suffering impinges on their quality of life. Once the assessment is complete, Berger and her team identify the health professionals who can best meet each patient's needs. They run the gamut from counselors, massage and music therapists, dietitians, social workers, clergy-- even pet therapists and acupuncturists-- to surgeons and neurologists who can conduct procedures that alleviate pain.
The array of problems that patients experience means that Berger may become involved in an astounding set of activities on any given day. Sometimes she prescribes a high-tech solution to a patient's complaint. Sometimes she is the friendly neighbor who listens and chats. Sometimes she is an educator, teaching physicians and nurses about palliative care. For instance, she recalls that when a patient had problems breathing and she recommended aerosolized morphine, the patient's pulmonologist-- skilled in diagnosis and treatment but not up on symptom management-- considered it a marginal therapy. She pointed out that a chapter in a textbook she had co-edited offered ample evidence supporting its use. Since that time, he has regularly prescribed aerosolized morphine.
But Berger also oversees something she considers equally important: palliative care for the doctors and other health professionals at the clinical center. " Being exposed to suffering on a daily basis can be emotionally taxing," she says. " What happens over time when many of your patients are seriously ill is you deal with crisis, crisis, crisis, crisis, and loss, loss, loss, loss." Few health care workers have an opportunity to contend with their feelings about the patients for whom treatment was not successful. " And providers who do not deal with their own feelings of loss are not going to be able to heal other people," she notes.
For this kind of integral care to be administered in hospitals is, in Berger's experience, impossible unless hospital leaders provide firm institutional support. Programs do not usually survive for very long without it, she observes.
Palliative medicine has not stirred much visible opposition among physicians, but it is challenging basic assumptions. According to Russell K. Portenoy, who chairs the palliative care department at Beth Israel Medical Center in New York City, patients typically struggle with questions about why they have become ill, and such questioning can threaten their essential belief structure. Yet those concerns, he says, " tend to be minimized by physicians whose training is not in the area of assessing and managing spiritual distress."
Berger would like every hospital to have at least one physician or nurse practitioner who is trained in and can focus on palliative care. She founded and leads an NIH working group that is trying to set up palliative medicine programs from coast to coast. But how can cash-strapped hospitals afford it? Berger says that most could start with modest ones. She points out that palliative care may reduce costs overall-- by, for instance, helping patients to leave the hospital sooner or undergo fewer rehospitalizations. Clinical studies are under way to assess the economic feasibility of such programs.
If Berger had any doubts about the course of her career, they were laid to rest three days after her NIH palliative care appointment in August 2000. Diagnosed with breast cancer, she endured the disease's course, although she has remained well since completing surgery. The experience reinforced her interest in understanding life-threatening illness from the other side of the stethoscope: " Once I became a patient, I saw that I wanted the cure but I also wanted myself-- as a person-- to be taken care of. Then it really jelled."
Bob Kirsch is a medical writer based in Ossining, N.Y.
© 1996-2002 Scientific American, Inc.