An opportunity to care? Preliminary insights from a qualitative study on advance care planning in advanced COPD

Abstract

BackgroundChronic obstructive pulmonary disease (COPD) is a significant source of human and financial cost worldwide, yet practitioners seldom discuss prognosis or advance care planning (ACP) with these patients. The ascendency of more patient-centered models of care suggests a need for change in our traditional approaches to ACP. This paper offers some preliminary observations from a qualitative doctoral study to explore the question: What is required for meaningful, acceptable ACP in the context of advanced COPD?MethodsFifteen people (eight patients with advanced COPD plus seven informal caregivers) participated in two in-home sessions of ACP-related dialogue. Participants were asked about this ACP experience, with particular attention to effects on hope.FindingsDespite initial resistance on the part of six out of eight patients, all were able to discuss end-of-life care concerns and appreciate some aspects of doing so. In general they appreciated the sessions as an opportunity to: (1) learn more about end-of-life care options; (2) consider/document end-of-life care preferences; (3) counter the silence around the subject; and/or (4) have their illness concerns and experiences heard.ConclusionsParticipant feedback suggests that they found the study ACP sessions acceptable and meaningful. All were able to consider/address end-of-life care concerns without affecting hope, and they felt cared for while doing so. ACP done as a sensitive, ongoing patient/family-centered process may enhance end-of-life care decision making, but just as importantly may be experienced as a mode of care at a time and by a population that often seems neglected on both counts.