Living and dying with chronic obstructive pulmonary disease.

OBJECTIVE: To characterize chronic obstructive pulmonary disease (COPD) over patients' last 6 months of life.

STUDY DESIGN: A retrospective analysis of a prospective cohort from the Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatments (SUPPORT).

SETTING: Hospitalization for exacerbation of COPD at five US teaching hospitals.

PARTICIPANTS: COPD patients who died within 1 year (n = 416) among 1016 enrolled.

METHODS: Interview and medical record data were organized into time windows beginning with death and ending 6 months earlier.

OUTCOME MEASURES: Days in hospital, prognosis, illness severity, function, symptoms, patients' preferences, and impacts on families.

RESULTS: One-year survival was 59%, 39% had > or = 3 comorbidities, and 15 to 25% of the patients' last 6 months were in hospitals. Exacerbation etiologies included respiratory infection (47%) and cardiac problems (30%). Better quality of life predicted longer survival (ARR: 0.36; 95% CI, 0.19-0.87) as did heart failure etiology of exacerbation (ARR: 0.57; CI, 0.40, 0.82). Estimates of survival by physicians and by prognostic model were well calibrated, although patients with the worst prognoses survived longer than predicted. Patients' estimates of prognosis were poorly calibrated. One-quarter of patients had serious pain throughout, and two-thirds had serious dyspnea. Patients' illnesses had a major impact on more than 25% of families. Patients' preferences for Do-Not-Resuscitate orders increased from 40% at 3 to 6 months before death to 77% within 1 month of death; their decisions not to use mechanical ventilation increased from 12 to 31%, and their preferences for resuscitation decreased from 52 to 23%.

CONCLUSIONS: Patients with advanced COPD often die within 1 year and have substantial comorbidities and symptoms. Adequate description anchors improved care.