‘People that suffer or have been through it know the answers’: stakeholders’ perspectives on improving healthcare systems for end-of-life care in chronic obstructive pulmonary disease

Background Chronic obstructive pulmonary disease (COPD) is a progressive and disabling lung condition with a high mortality. Our research has shown that health care for end-of-life COPD is poorly integrated. The aim of this study was to involve people with end-of-life COPD, their support people and health professionals in the design of healthcare services to help improve the delivery of care for advanced COPD, including informing system-level quality improvement. Design We conducted a focus group study involving stakeholders of healthcare services: people with end-of life COPD, support people, bereaved support people, and community- and hospital-based health care professionals. Methods We conducted qualitative analysis using deductive structural coding, and then inductive descriptive and pattern coding. Analyses were triangulated by investigators. The research positioned people with end-of-life COPD, their support people and health professionals as experts in healthcare services. Critical theory and Actor-Network theory informed the analysis. Results Seven focus groups involving 74 participants reported their experiences of end-of-life care for COPD. Five themes related to healthcare systems responses to improving care quality were identified: governance, system integration, resource design and development, standardisation of processes, and communication. Conclusion Stakeholders provided multiple healthcare system-level responses to end-of-life care in COPD that could inform healthcare service design and clinical quality improvement.