Dying with Cancer: Patients' Function, Symptoms, and Care Preferences as Death Approaches

OBJECTIVE: To characterize the dying experience of patients with cancer over the last 6 months of life. STUDY DESIGN: A retrospective analysis of the last 6 months of life among patients with colon cancer and non-small cell lung cancer enrolled in a prospective cohort study from June 1989 to June 1991 and from January 1992 to January 1994. SETTING: Five geographically diverse tertiary care academic medical centers participating in the Study to Understand Patient Prognoses and Preferences for Outcomes and Risks of Treatments (SUPPORT) Project. PARTICIPANTS: All patients enrolled in SUPPORT who had either colon cancer, metastatic to the liver or stage III or stage IV non-small cell lung cancer and died within 1 year of their index hospitalization. This report examines 316 of 520 patients with metastatic colon cancer and 747 of 939 patients with lung cancer enrolled in SUPPORT. METHODS: Data were collected by interview and chart abstraction at several time points in the SUPPORT Project. To describe progression to death, we constructed four observational windows backward in time beginning with patients' date of death and ending with their date of entry into the SUPPORT Project or 6 months before their death, whichever came first: (1) 3 days before death, (2) 3 days to 1 month before death, (3) 1 month to 3 months before death, and (4) 3 months to 6 months before death. For each outcome, patients contributed information to all windows during which they had data collected. We describe the frequency distributions of each outcome over time and report tests for trend. OUTCOME MEASURES: We examined several outcomes over time, including: percentage of days spent in a hospital; prognosis as measured by model-based prognostic estimates of 6-month survival; severity of illness as measured by the acute physiology score; functional status as measured by dependencies in activities of daily living (ADLs); severe physical and emotional symptoms, including pain, depression, and anxiety; patients' preferences for care; and the financial impact on patients' families. RESULTS: The death rate within 1 year of study entry was high among patients with metastatic colon cancer and advanced non-small cell lung cancer enrolled in SUPPORT (61% and 80%, respectively). As patients with cancer progress toward death, their estimated 6-month prognosis decreases significantly and the severity of their disease worsens. Patients' functional status also declines significantly as they approach death, such that most patients have four or more impairments within the 3 days before death. Patients with cancer experience significantly more pain and confusion as death approaches. Severe pain is common; more than one-quarter of patients with cancer experience serious pain 3 to 6 months before death and more than 40% were in serious pain during their last 3 days of life. However, dying patients are only modestly depressed and anxious during their last 3 days of life. As death approaches, patients favor comfort measures over life-extension, and about two-thirds want to forego resuscitation within 3 days of death. Families of patients dying with cancer incurred significant financial burdens during the last 6 months of life, and much of this burden was already experienced by 3 to 6 months before death. CONCLUSIONS: The last 6 months of life for patients with cancer is characterized by functional decline and poorly controlled severe pain and confusion. Although patients increasingly prefer comfort care as they near death, many die in severe pain. These findings highlight important opportunities to improve the quality of care at the end of life for patients dying with cancer.