Executive Summary

Until the early part of the twentieth century, most Americans died of infectious diseases, many in childhood and middle age. Then, virtually every serious illness, including cancer, spelled a fairly rapid course to death. Those who survived to old age and developed the chronic diseases that the majority of people now die from had shorter trajectories until death, with few experiencing prolonged periods of illness. Malignancies were identified only when large or in a critical location, and most often, no treatments were available that substantially altered the course. Now, many patients with cancer live much longer, with periods of adaptation to cancer as a chronic debilitating disease. However, most still eventually die from the cancer.

Improvements in the development and delivery of symptom control and other aspects of palliative care needed in the late stages of cancer (and other chronic diseases) have not kept pace with the medical advances that have allowed people to live longer. For at least half of those dying from cancer, death entails a spectrum of symptoms, including pain, labored breathing, distress, nausea, confusion, and other physical and psychological conditions that go untreated or undertreated and vastly diminish the quality of their remaining days. Patients, their families, and caregivers all suffer from the inadequate care available to patients in pain and distress, although the magnitude of these burdens is only now being described.

This report defines the major barriers that keep people from receiving excellent palliative care, as needed, throughout the course of their illness with cancer and recommends a series of steps forward. It builds on the



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