Case Study: Special Care at The End of Life

Somebody is going to have to invent a new word to describe the kinds of cases that Dr. Diane Meier deals with as head of the palliative-care program at New York's Mount Sinai Medical Center--"complicated" just doesn't get the job done. Among her patients this year: a 93-year-old woman, newly diagnosed with pancreatic cancer, unable to eat and in need of round-the-clock pain medication, who was the sole caregiver for her demented 90-year-old sister; an 81-year-old woman with bleeding into her lungs that was so bad she required almost constant transfusions to stay alive and who needed to be told that the operation she expected to save her life hadn't worked and she was going to die; a man in his 60s with heart disease who became too sick for the transplant he was counting on and whose daily at-home nursing needs were too much to manage for his wife, who works full time as a teacher to support them and has health problems of her own.

The list could go on, and on. Meier and her staff at Mount Sinai (which includes eight doctors, four nurses and two social workers) will treat about 1,000 patients this year, each one a daunting tangle of medical, psychological, social and spiritual issues. Many are the sort of patients who simply didn't exist a generation ago because the technology and drugs that help keep them alive didn't exist. They are chronically ill, often with multiple medical problems (what doctors call polymorbidity), plagued by pain and other debilitating symptoms, unlikely to benefit from surgery or other interventions. For the majority, death is nigh--it could be hours, it could be months, but there is no other prognosis. They are, in other words, exactly the sort of patients who often get lost in today's cure-driven, hyperspecialized health-care system. "Our patients are the ones who don't fit on the pathway," says Meier. "The normal processes of the hospital don't work well for them."

But determined people like Meier are transforming the way U.S. hospitals care for the most seriously ill patients. The engine of change is palliative medicine, a holistic, team approach to advanced illness that focuses on controlling symptoms (especially pain), setting realistic treatment goals and improving communication among all the parties involved in a case. When it's done right, patients suffer less, families have more control, doctors and nurses have closer and more satisfying relationships with patients and families, and hospital costs are reduced even as the quality of care improves. The field, with its roots in the hospice movement, is booming. Between 2000 and 2004, the number of hospital-based palliative-care programs in the country jumped from 632 to 1,102, which is 27 percent of all hospitals. The number of doctors and nurses who specialize has also climbed steadily in recent years, with 1,982 doctors and 5,500 nurses now certified in the field.

Like most candidates for palliative care, Angel Cruz and his wife, Thomasina, had never heard of it and had no idea that it was exactly what they needed. Angel, 29, was diagnosed with pancreatic cancer in the summer of 2005, after months of pain and other symptoms. Cruz, a school custodian in Alpharetta, Ga., endured a series of tests and treatments at three different hospitals in the Atlanta area before a family friend recommended Mount Sinai. (Palliative care is covered by health insurance and Medicare, just like cardiology and other medical specialties.) Once there, Cruz was referred by his oncologist to the program Meier runs, which is formally known as the Hertzberg Palliative Care Institute. "It helped me big time," says Cruz, "because not only do they help with the pain, they want to hear about how I'm doing, about my problems." Those problems included depression, so Cruz's palliative-care team arranged for him to see a therapist. He, Thomasina and their 5-year-old daughter, Tiara, are now living with relatives in Brooklyn. They meet regularly with the team, which includes a massage therapist. Massages are available to family members as well as patients, and during one vis-it Thomasina decided to have one. "It was something else," she says.

Giving a massage to the spouse of a cancer patient whose pain is under control is pretty much a perfect example of palliative care in action. "The field is growing because it pays attention to the details," says Dr. Philip Santa-Emma, chief of palliative care for the Mount Carmel Health System in Columbus, Ohio. "It acknowledges that even if we can't fix the disease, we can still take wonderful care of patients and their families."

After pain control, communication is the most important job of the palliative-care team. Most of the benefits--from avoiding unnecessary procedures to arranging for very sick patients to go home--depend on it. Communicating with patients and families about their options at the end of life takes more than tact and empathy. "Communication sounds easy, but it requires a tremendous amount of training and skill," says Meier. "And it is incredibly time-consuming. You can't rush a patient and a family through these conversations, or you might as well not have started them."

Though the majority of palliative-care patients are terminally ill, that is not one of the criteria for inclusion in a program. According to Dr. Sean Morrison, a colleague of Meier's at Mount Sinai, a family should consider palliative care if the patient has a chronic, serious illness; is experiencing pain or other symptoms, or requires help at home, whether it's nursing care or simply needing to be driven places. Patients who are unclear about which treatments to have or are simply worried about dying are also candidates. "And if palliative care is not right for you," says Morrison, "the team will get you into the program you need." The word for that--caring--works just fine.