As the debate over healthcare reform slogs through summer, misinformation about "death panels" and seniors' healthcare being rationed keeps on proliferating, one fiery town hall meeting at a time. The impassioned discourse may have you wondering about current practice to help a patient cope with serious illness or end-of-life realities. The term "palliative care" often conjures tones of a death knell, but the reality of what such services provide—and when they can and should be recruited—might be surprising. While death might ultimately become a part of the conversation, recruiting such care is not just about dying.
Improving all aspects of life is the goal of palliative care. By definition, palliative care (of which hospice is a version for people who have only months to live) is meant to improve a patient's quality of life and can reach into the realms of psychological, emotional, and spiritual well-being. "We're not curing these illnesses, we're helping people live with them," says Diane Meier, a primary-care geriatrician and director of the Hertzberg Palliative Care Institute at Mount Sinai School of Medicine in New York City.
When patients sign on for palliative care, they start a process focused on managing pain and other symptoms that can nag at quality of life—trouble sleeping, nausea, vomiting, constipation, loss of appetite—and can also provide psychological, emotional, and spiritual support. It can tend to the needs of family caregivers as well. The team might include doctors, nurses, social workers, massage therapists, pharmacists, and chaplains. They create a program based not on the patient's prognosis—as might be the case with other specialists, who, say, adjust medications based on frequent rounds of blood work—but rather on the challenges the patient is grappling with, from physical symptoms to anxiety about the difficulty of caring for young children while ill to a family caregiver's stress or depression.
Getting palliative care does not preclude patients from getting treatment to cure illnesses or lengthen life. "People have the assumption that death is going to take place next week" if palliative care services are called upon, says J. Donald Shumacher, president and CEO of the National Hospice and Palliative Care Organization. Not the case. With nonhospice palliative care, a person living with serious illness can be given simultaneous, even aggressive, treatment for disease. "We help people negotiate what may be a many, many-year struggle," says Meier. Research in the August issue of the Journal of the American Medical Association found that cancer patients who got palliative care along with their oncology care scored better on measures of quality of life and mood than those who did not.
Involvement of palliative-care specialists is not always the norm. A complex case may be managed by a range of clinicians in specialties ranging from cardiology to endocrinology and pulmonology. While each is intent on beating back the foes from the perspective of his or her specialty, no one may be focused meaningfully on the patient's level of comfort and anxiety or distress, much less the coping abilities and support of family caregivers. Coordination of care, says Meier, is critical but all too often lacking unless patients seek it out. Primary-care physicians, geriatricians, and palliative-care specialists can fill this role—looking out for toxic drug interactions prescribed by different specialists, say, or an unnecessary chest X-ray ordered by a specialist unaware that a patient had one just two days earlier in the emergency room.
Even in hospitals that provide the services, physicians are not always tuned in to call on them and may not be aware how early the services may be appropriate and helpful. Shumacher estimates that palliative services are offered by clinicians only about half of the time. Indeed, hospice and palliative medicine officially became a medical subspecialty only in 2006. More than half of U.S. hospitals with more than 50 beds and about three quarter of those with over 300 beds offer palliative-care programs.