In the nation's single-minded focus on curing cancer, we have inadvertently devalued the critical need for palliative care, which focuses on alleviating physical and psychological symptoms over the course of the disease. Nothing would have a greater impact on the daily lives of cancer patients and their families than good symptom control and supportive therapy. Yet the National Cancer Institute (NCI), the federal government's leader in cancer research and training, spent less than 1 percent of its 1999 budget on any aspect of research or training in palliative care.
The nation needs to get serious about reducing needless suffering. NCI should commit to and fund research aimed at improving symptom control and palliative care. NCI also could designate "centers of excellence" among the cancer centers it recognizes. To get that designation, centers would deliver innovative, top-quality palliative care to all segments of the populations the centers serve; train professionals in medicine, nursing, psychology, social work, and other disciplines to provide palliative care; and conduct research.
Insurance coverage for palliative and hospice care also contributes to the problem by forcing people to choose between active treatment or hospice care. This "either/or" approach does not readily allow these two types of essential care to be integrated. The Medicare hospice benefit is designed specifically for people in the final stages of illness and allows enrollment only if patients are expected to survive six months or less. The benefit excludes patients from seeking both palliative care and potentially life-extending treatment.
That makes hospice enrollment an obvious deterrent for many patients. And hospices, which may have the most skilled practitioners and the most experience in administering palliative care, cannot offer their services to people who could really benefit but still are pursuing active treatment. The Centers for Medicare and Medicaid Services should place a high priority on quickly funding demonstration projects to devise better ways to deliver and reimburse palliative care for cancer patients when and where they need it. Private insurers also need to remedy major problems. In particular, coverage and reimbursement to provide palliative care for children with cancer is notoriously poor.
Another barrier to good palliative care is simply a lack of information. Patients and families need to know their options for symptom control and care at the end of life. But it is difficult--if not impossible--for patients and their families to get basic information explaining the content and availability of palliative care throughout the course of a disease, or about hospice options at the end of life. Organizations such as NCI, the American Cancer Society, health insurers, and pharmaceutical companies should provide comprehensive, patient-oriented information about palliative care.
It is innately human to comfort and provide care to those suffering from cancer, particularly those close to death. Yet what seems self-evident at an individual, personal level has not guided policy at the level of institutions in this country. Death is inevitable, but severe suffering is not. To offer hope for a long life of the highest possible quality and to deliver the best quality cancer care from diagnosis to death, our public institutions need to move toward policies that value and promote palliative care.