Which factors influence the quality of end-of-life care in interstitial lung disease? A systematic review with narrative synthesis.

ABSTRACT

BACKGROUND: People dying from interstitial lung disease experience considerable symptoms and commonly die in an acute healthcare environment. However, there is limited understanding about the quality of their end-of-life care. AIM: To synthesise evidence about end-of-life care in interstitial lung disease and identify factors that influence quality of care. DESIGN: Systematic literature review and narrative synthesis. The review protocol was prospectively registered with PROSPERO (CRD42020203197). DATA SOURCES Five electronic healthcare databases were searched (Medline, Embase, PubMed, Scopus and Web of Science) from January 1996 to February 2021. Studies were included if they focussed on the end-of-life care or death of patients with interstitial lung disease. Quality was assessed using the Critical Appraisal Skills Programme checklist for the relevant study design. RESULTS: A total of 4088 articles were identified by initial searches. Twenty-four met the inclusion criteria, providing evidence from 300,736 individuals across eight countries. Most patients with interstitial lung disease died in hospital, with some subjected to a high burden of investigations or life-prolonging treatments. Low levels of involvement with palliative care services and advance care planning contributed to the trend of patients dying in acute environments. This review identified a paucity of research that addressed symptom management in the last few days or weeks of life. CONCLUSIONS: There is inadequate knowledge regarding the most appropriate location for end-of-life care for people with interstitial lung disease. Early palliative care involvement can improve accordance with end-of-life care wishes. Future research should consider symptom management at the end-of-life and association with location of death.