“It Felt Like Throwing in the Towel”: Family Caregiver Perspectives on End-of-Life Decision Making in Chronic Obstructive Pulmonary Disease
Background:
Chronic obstructive pulmonary disease (COPD) has an unpredictable trajectory and high symptom burden, complicating end-of-life (EOL) decisions around place of death and hospice use. Little is known about how families navigate these decisions.
Methods:
We conducted semi-structured interviews with bereaved caregivers of people with COPD who received pulmonary care at a U.S. academic center and died within 12 months. Two investigators performed template analysis to identify themes.
Results:
We interviewed 18 caregivers (median age 58; 50% Black; 89% female). Fifty-six percent of decedents received hospice; 33% died at home. Caregivers described five themes: missed prognostic cues and poor communication; hospice as both loss and relief; home as ideal but hospital as default; financial influences on decisions; and mismatch between hospice and COPD needs.
Conclusions:
Caregivers identified a readiness gap driven by prognostic uncertainty, communication challenges, and financial constraints. Clearer communication and hospice models better aligned with COPD are needed.
Chronic obstructive pulmonary disease (COPD) has an unpredictable trajectory and high symptom burden, complicating end-of-life (EOL) decisions around place of death and hospice use. Little is known about how families navigate these decisions.
Methods:
We conducted semi-structured interviews with bereaved caregivers of people with COPD who received pulmonary care at a U.S. academic center and died within 12 months. Two investigators performed template analysis to identify themes.
Results:
We interviewed 18 caregivers (median age 58; 50% Black; 89% female). Fifty-six percent of decedents received hospice; 33% died at home. Caregivers described five themes: missed prognostic cues and poor communication; hospice as both loss and relief; home as ideal but hospital as default; financial influences on decisions; and mismatch between hospice and COPD needs.
Conclusions:
Caregivers identified a readiness gap driven by prognostic uncertainty, communication challenges, and financial constraints. Clearer communication and hospice models better aligned with COPD are needed.