A23-16 “It Felt Like Throwing in the Towel”: Bereaved Family Caregivers’ Perspectives on Hospice Decisions and Experiences in COPD

Background Patients with advanced chronic obstructive pulmonary disease (COPD) often have unpredictable illness trajectories, making timely communication and decisions about hospice particularly challenging. Although hospice is associated with improved comfort and support, little is known about how families of patients with COPD make decisions about and experience hospice care. Methods We conducted semi-structured interviews with 18 bereaved caregivers whose loved ones had COPD, received pulmonary care at Emory, and died within the past 12 months. Two investigators independently analyzed data using template analysis. Results We interviewed 18 bereaved caregivers (median age 58 years, 50% Black, 89% female); 56% of decedents received hospice care. We identified five themes: (1) missed prognostic cues and poor communication derail timely hospice, (2) hospice as both a loss and a relief, (3) home is the ideal, but hospital is the default, (4) financial realities shape end-of-life decisions, and (5) hospice does not always fit the needs of COPD. Families valued hospice for reducing treatment burden and enabling care at home but described unmet needs related to dyspnea management, staff availability, continuity with pulmonary clinicians, and the challenges of a long illness trajectory while in hospice. Regardless of whether families chose hospice, financial considerations were central to where and how care occurred. Some viewed hospice as the only financially viable way to secure affordable help at home, while others—unable to afford private aides or uncertain about insurance coverage—described feeling forced into facility care or managing alone. Caregivers also offered practical recommendations for improving communication, preparedness, and the fit of hospice services to better meet the needs of patients with COPD and their families. Conclusion Bereaved caregivers described how delayed communication and financial pressures shaped hospice decisions and experiences for patients with COPD, revealing a readiness gap between clinical need and timely hospice engagement. Future work should focus on promoting earlier and clearer communication, addressing financial and structural barriers, and adapting hospice models to better fit the realities of COPD to improve the timeliness and quality of end-of-life care for patients and their families.