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 ≥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.