WASHINGTON—The nation needs to greatly improve the palliative and supportive care provided to cancer patients from diagnosis through death, according to a new report by the National Cancer Policy Board (NCPB), part of the National Academy of Sciences’ Institute of Medicine. The report made a series of recommendations intended to break down or lower the barriers to excellent care for people with cancer.
"In the pursuit of a cure, the nation has almost ignored the need to reduce the suffering caused by the physical and emotional symptoms of cancer and the side effects of cancer treatment," Kathleen M. Foley, MD, who headed the study, said at a press conference. "Nothing would have a greater impact on the daily lives of cancer patients and their families than good symptom control and supportive therapy."
Dr. Foley, a neurologist and pain specialist at Memorial Sloan-Kettering Cancer Center, said that the National Cancer Institute (NCI) spent less than 1% of its budget in fiscal year 1999 on any aspect of research or training in palliative and supportive care. "The group that has made the most important advances in palliative care is the US Department of Veterans Affairs," she said. "It is now time for the federal government to develop broader solutions to the barriers that limit advances in palliative care."
According to the NCPB report, half of all cancer patients diagnosed today will die of their disease within a few years. For at least half of these, a spectrum of symptoms will accompany their deaths, including pain, labored breathing, distress, nausea, confusion, and other physical and psychological conditions that will go untreated or be undertreated.
"A major problem in palliative care is the under-recognition, underdiagnosis, and, thus, undertreatment of patients with significant distress, ranging from existential anguish to anxiety and depression," the report said.
The report noted that dying patients, when asked about their concerns about their care, listed psychosocial issues as three of their five major worries. These concerns were "no prolongation of dying; maintaining a sense of control; and relieving burdens (conflicts) and strengthening ties" with their families.
Patients are not the only ones who suffer during the dying process, the report stated. "The impact on families and caregivers is still poorly documented, but evidence has begun to be collected demonstrating a heavy and mostly unrelieved emotional and financial burden."
Problems in palliative care persist despite the fact that one quarter of Medicare dollars are spent in the last year of life, and half of that is spent in the last month of life, the report stated.
No single factor accounts for the inadequate palliative and end-of-life care provided cancers patients, the report said. Rather, the fault lies in institutional and economic barriers, inadequate availability of information about what can be achieved, lack of training and education for health professionals, and "minuscule public sector investments in research to improve the situation."
The recommendations by the NCPB to address the problem include:
• NCI should designate certain of the cancer centers it helps to support to play a central role in advancing symptom control and palliative care for both children and adults. "This would involve, among other things, carrying out research, delivering excellent palliative care to all segments of the population treated, training professionals to provide palliative care, and providing accurate and complete information to the public," Dr. Foley said.
• NCI should add the requirement of research in palliative care and symptom control for recognition as a comprehensive cancer center.
• The Centers for Medicare and Medicaid Services (formerly the Health Care Financing Administration) (see article) should fund demonstration projects for service delivery and reimbursement that integrate palliative care and potentially life-prolonging treatments throughout the course of the disease.
• Private insurers should provide adequate compensation for end-of-life care. "In constructing benefit packages, private insurers should also recognize the special needs of younger people and children with cancer," Dr. Foley said.
• Organizations that provide information about cancer—including NCI, the American Cancer Society, and patient advocacy groups—should revise their materials, where appropriate, to include comprehensive and accurate information about palliative and end-of-life care. "This type of information is simply absent from most of the materials about cancer treatment," Dr. Foley noted.
• The best available practice guidelines should dictate the standard of care for both physical and psychosocial symptoms. "Practice guidelines are in widespread use for treating cancer and other diseases, but for palliative care and end-of-life issues, they are in comparatively early stages of development," Dr. Foley said. "Professional societies, funding bodies, and payers of care should all act to completely develop these tools and require that they be used."
• NCI should convene a state-of-the-science meeting to provide a high profile strategic research agenda that can be pursued by NCI and its research partners over the short and long terms.
• NCI should establish the most appropriate in-house locus (or more than one) for palliative care, symptom control, and other end-of-life research. The report suggested that the site might be the Division of Cancer Treatment and Diagnosis.
• NCI should review the membership of its advisory bodies to ensure representation of experts in cancer pain, symptom management, and palliative care.
