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“I feel like you should buy an umbrella before it starts raining”: caregiver perspectives on illness inflection points in chronic obstructive pulmonary disease

Year: 2026

Type: article

Abstract: RATIONALE: The prolonged and unpredictable trajectory of chronic obstructive pulmonary disease (COPD) complicates prognostication and leaves caregivers uncertain about what to expect. Although caregiver unmet needs are well described, little is known about how they interpret missed or unclear prognostic conversations or how informational and support needs evolve during concrete illness transitions. OBJECTIVES: To examine how bereaved caregivers of people with COPD perceive illness inflection points and how communication gaps and multimorbidity shape their expectations and support needs. METHODS: We conducted semi-structured interviews with bereaved caregivers of patients with any stage of COPD who had been seen in Emory Healthcare pulmonary clinics and died of respiratory causes within the prior 12 months. Two investigators independently analyzed transcripts using template analysis. RESULTS: We interviewed 18 bereaved caregivers (median age 58 years, 50% Black, 89% female). We identified 2 key themes: (1) Navigating without a roadmap: caregivers want earlier, clearer communication about what to expect as COPD progresses; and (2) Missing the signposts: inflection points in the COPD illness trajectory are missed opportunities for additional support. The initiation of supplemental oxygen was described as a particularly visible and life-altering marker of advanced disease, triggering loss of independence and reshaping daily life for patients and caregivers. CONCLUSIONS: Bereaved caregivers emphasized the need for earlier, more specific prognostic conversations that focus on functional decline and care needs rather than time remaining. Clearer expectations about the illness course and help distinguishing COPD progression from other comorbidities may enable caregivers to recognize illness transitions as meaningful signals. Recognizing oxygen initiation and other illness inflection points as actionable indicators could help clinicians provide timely prognostic information, anticipatory guidance, and supportive care to patients and families across the COPD trajectory.

Source: Annals of the American Thoracic Society

DOI: 10.1093/annalsats/aaoag094