Palliative care needs and integration of palliative care support in chronic obstructive pulmonary disease (COPD) : a qualitative study

Article

FU, Yu | MASON, Anne | BOLAND, Alison C. | LINKLATER, Gordon | DIMITROVA, Vania | DONATE-MARTINEZ, Ascensión | BENNETT, Michael I.

BACKGROUND: The provision of palliative care for severe chronic obstructive pulmonary disease (COPD) remains low resulting in unmet needs in patients and carers. RESEARCH QUESTION: This study aimed to 1) explore palliative care needs of patients living with severe COPD and their caregivers, 2) understand views of accessing and providing palliative care and factors influencing these experiences, and 3) explore to what extent palliative care and COPD services have been integrated. STUDY DESIGN AND METHODS: A multicentre qualitative study was undertaken in COPD services and specialist palliative care in the UK, involving patients with severe COPD, their carers and health professionals. Data were collected using semi-structured interviews and analysed 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 important by health professionals for timely palliative care referrals and optimised management. INTERPRETATION: Palliative care is increasingly being implemented for non malignant diseases including COPD throughout the UK although models of working vary. A theoretical model is developed to illustrate the concept and pathway of the integration of palliative care support. A standardised screening and needs assessment tool is required to improve timely palliative care and address the significant needs of this population.

http://dx.doi.org/10.1016/j.chest.2020.12.055

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