1999 National Cancer Policy Board report Ensuring Quality Cancer Care, which included a recommendation to
Ensure quality of care at the end of life, in particular, the management of cancer-related pain and timely referral to palliative and hospice care.
This report also takes forward the agenda outlined in a 1997 Institute of Medicine (IOM) report, Approaching Death: Improving Care at the End of Life, the first comprehensive, evidence-based, national report on these issues, which stimulated widespread interest and progress in some aspects of care for the dying. With the 1997 and 1999 reports as backdrop, the current effort focuses on specific areas in which the National Cancer Policy Board believes action still has to be catalyzed.
Barriers throughout the health care and medical research systems stand in the way of many people receiving effective palliative care where and when they need it. These barriers include the following:
the separation of palliative and hospice care from potentially life-prolonging treatment within the health care system, which is both influenced by and affects reimbursement policy;
inadequate training of health care personnel in symptom management and other end-of-life care skills;
inadequate standards of care and lack of accountability in caring for dying patients;
disparities in care, even when available, for African Americans and other ethnic and socioeconomic segments of the population;
lack of information resources for the public dealing with palliative and end-of-life care;
lack of reliable data on the quality of life, and the quality of care of patients dying from cancer (as well as other chronic diseases); and
low level of public sector investment in palliative and end-of-life care research and training.
Background papers (Part 2 of this report) were commissioned to explore the reasons for inadequacies in palliative and end-of-life care, and these (as well as consultation with additional experts and literature review) form the evidence base for the recommendations in this report. The background papers cover the following topics:
Economic Issues and Barriers to Reliable, High-Quality, Efficient End of Life Care for Cancer Patients
Quality Indicators for End-of-Life Cancer Care