When should palliative care be introduced for people with progressive fibrotic interstitial lung disease? A meta-ethnography of the experiences of people with end-stage interstitial lung disease and their family carers

Abstract

Background: Little is currently known about the perspectives of people with interstitial lung disease and their carers in relation to the timing of palliative care conversations. Aim: To establish patients’ and carers’ views on palliative care in interstitial lung disease and identify an optimum time to introduce the concept of palliative care. Design: Meta-ethnography of qualitative evidence. The review protocol was prospectively registered with PROSPERO (CRD42021243179). Data sources: Five electronic healthcare databases were searched (Medline, Embase, CINAHL, Scopus and Web of Science) from 1st January 1996 to 31st March 2022. Studies were included that used qualitative methodology and included patients’ or carers’ perspectives on living with end-stage disease or palliative care. Quality was assessed using the Critical Appraisal Skills Programme checklist. Results: About 1779 articles were identified by initial searches. Twelve met the inclusion criteria, providing evidence from 266 individuals across five countries. Three stages were identified in the illness journey of a person with interstitial lung disease: (1) Information seeking, (2) Grief and adjustment, (3) Fear of the future. Palliative care involvement was believed to be most appropriate in the latter two stages and should be prompted by changes in patients’ health such as respiratory infections, onset of new symptoms, hospital admission, decline in physical function and initiation of oxygen. Conclusions: Patients and carers prefer referral to palliative care services to be prompted by changes in health status. Future research should focus on supporting timely recognition of changes in patients’ health status and how to respond in a community setting.