“It Felt Like Throwing in the Towel”: Family Caregiver Perspectives on End-of-Life Decision Making in Chronic Obstructive Pulmonary Disease

Abstract

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.