Palliative Care Needs and Integration of Palliative Care Support in COPD: A Qualitative Study

Abstract

Background: The provision of palliative care for severe COPD remains low, resulting in unmet needs in patients and carers.

Research questions: What are the palliative care needs of patients living with severe COPD and their caregivers? What views of accessing and providing palliative care and factors influence these experiences. To what extent have palliative care and COPD services been integrated?

Study design and methods: A multicentre qualitative study was undertaken in COPD services and specialist palliative care in the United Kingdom involving patients with severe COPD, their carers, and health professionals. Data were collected using semistructured interviews and were analyzed using framework analysis. Themes were integrated using the constant comparison process, enabling systematic data synthesis.

Results: Four themes were generated from interviews with 20 patients, six carers, and 25 health professionals: management of exacerbations, palliative care needs, access to palliative care and pathways, and integration of palliative care support. Uncertainty and fear were common in patients and carers, with identified needs for reassurance, rapid medical access, home care, and finance advice. Timely palliative care was perceived as important by health professionals. Palliative care was integrated into COPD services, although models of working varied across regions. Reliable screening tools and needs assessment, embedded psychological care, and enhanced training in palliative care and communication skills were perceived to be important by health professionals for timely palliative care referrals and optimized management.

Interpretation: Palliative care increasingly is being implemented for nonmalignant diseases including COPD throughout the United Kingdom, although models of working vary. A theoretical model was developed to illustrate the concept and pathway of the integration of palliative care support. A standardized screening and needs assessment tool is required to improve timely palliative care and to address the significant needs of this population.

Keywords: COPD; end of life; palliative care.