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

Abstract

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 numberCRD42020168733.

‘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 airways disease

“…This nding aligns with our systematic review showing very few connections between stakeholders in the healthcare system, and government in healthcare delivery for advanced COPD. 3 A key nding in that evidence synthesis was the lack of priority placed by governments on addressing socio-political determinants of health in the delivery of high quality health care. A positive example of government policy taken on the research nding is the delivery of safe and warm housing to improve health outcomes for people with lung diseases.…”

“…At the commencement of each focus group, the research team displayed a diagram of the existing healthcare network for in end-of-life COPD healthcare reported in published qualitative studies. 3 The facilitators then asked participants to discuss whether this diagram re ected their experience in the health system. Speci c enquiry questions explored participant experiences of healthcare integration.…”

“…2 The expanding number of health professionals involved in the care of someone with progressive severe COPD, as their health needs become more complex, may lead to fragmentation of service delivery. 3 The involvement of people with end-of-life COPD and their support people in quality improvement of health services is gaining traction across the world. 4 Health systems all over the world identify the need for new and disruptive ways of delivering quality healthcare to people with complex health conditions to improve patient outcomes.…”

Policy, system and service design influence on healthcare inequities for people with end-of-life chronic obstructive airways disease, their support people and health professionals.

“…Each focus group commenced with the sharing of a diagram from a systematic review of the existing healthcare networks for people with end-oflife COPD. (5) The diagram set the research context for the participants, enabling patients and their support people and health professionals to provide re ections, critique and considerations of the diagram and their interactions with health systems and services.…”

“…(7) People with end-of-life COPD experience a healthcare system over which they have little in uence. (5) This lack of contribution to the very system mandated to care for them leads to the continuation of high-quality care for those privileged by health system and service design. Demonstrable improvements in health inequity may require a multi-disciplinary, multi-sector effort endorsed by relevant government ministries to shift.…”