Chapter 9: Professional Education in Palliative and End-of-Life Care for Physicians, Nurses, and Social Workers, Hellen Gelband
This report focuses exclusively on deaths from cancer, despite the fact that the number of people in the United States dying from other chronic diseases exceeds the number dying from cancer. Many of the issues raised and recommendations made in the report should benefit people dying from all these conditions, and it is not the NCPB’s intent to divert attention from the many people dying from congestive heart failure, kidney disease, or other diseases. There is a logic, however, to looking at cancer deaths alone, aside from the obvious point that this report is a product of the National Cancer Policy Board.
Cancer has been the “prototype” disease for organizing end-of-life care for several reasons: it has a more predictable trajectory from the point at which cure becomes unlikely until death than other chronic diseases; the most frequent and distressing symptoms are similar for many forms of cancer; there is a nationwide infrastructure of cancer centers carrying on cancer research, treating a significant minority of patients, and influencing the practice of oncology across the country; and the most generously funded of the National Institutes of Health (NIH) —NCI, approaching $4 billion in 2001—is focused on cancer.
This report points out deficiencies in the way patients with advanced cancer are treated, but this does not signify that oncology is behind other medical disciplines in palliative care in general or in care for dying patients. In fact, the cancer establishment has played a leading role in the area of pain management, using the cancer patient with pain as a model for other conditions and developing national guidelines and educational initiatives. Hospice care also developed around the needs of advanced cancer patients in close association with the cancer establishment. With that head start, cancer professionals are poised to take the lead in other areas of symptom control and the organization and delivery of excellent palliative care.
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 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 palliative care skills;