Patient, carer and health professional experiences of end-of-life care services in chronic obstructive pulmonary disease: an interpretive synthesis of qualitative studies.

The objective of this systematic literature review is to identify patients', carers' and health professionals' reported perspectives of end-of-life care services for severe chronic obstructive pulmonary diseases (COPD) and explore whether services are person-centred and integrated according to WHO definitions. The systematic review was qualitative with interpretive synthesis. The data sources included MEDLINE, CINAHL, Emcare, Embase, Cochrane (CENTRAL), Joanna Briggs Institute and PsycINFO databases from inception to 23 May 2022 limited to the English language. Qualitative studies were eligible if they reported open-ended patients,' carers' or healthcare professionals' experiences of end-of-life care for severe COPD. Qualitative data were categorised according to healthcare stakeholder groups and conceptualised within a health services network using the Actor-Network Theory. Eighty-seven studies proved eligible. Eleven stakeholder groups constituted the healthcare services network for severe COPD (in order of frequency of interactions with other stakeholders): secondary care, primary care, community services, acute care, palliative care, carer, healthcare environment, patient, government, social supports and research. When evaluating the network for evidence of patient-centred care, patients and carers received input from all stakeholder groups. The relationship between stakeholder groups and patients was largely unidirectional (stakeholders towards patients) with low influence of patients towards all stakeholder groups. There was limited interaction between specific healthcare services, suggesting low network integration. Government services, research and social supports had few connections with other services in the healthcare network. Multiple intersecting health, community and government services acted on patients, rather than providing patient-informed care. Health services provided poorly integrated services for end-of-life care for severe COPD. PROSPERO registration number CRD42020168733.