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.

Place of death among individuals with chronic respiratory diseases in China: Trends and associated factors between 2014 and 2020

“…At the individual level, our study found that sex, age, marital status, and education level were key factors associated with home deaths. This finding was consistent with previous studies, which found that death at home was more likely for individuals who were female, older, and had a higher level of education among patients with lung diseases ( 12 , 32 ). We also observed a higher likelihood of home deaths among rural residents and in regions with lower socioeconomic development status, including the lower level of GDP, number of beds in healthcare institutions, and average years of educational attainment.…”

Specialist Palliative Care Consultation for Patients with Nonmalignant Pulmonary Diseases: A Retrospective Study

“…In nonmalignant pulmonary diseases, receiving palliative care is associated with better symptom relief and quality of life, increased rate of advance care planning, death outside the hospital, and decreased burden from futile therapies and investigations in end of life. 3 , 10 , 18 , 19 , 27–30 The symptom burden and the need of palliative care in different nonmalignant pulmonary diseases are similar but the disease trajectory varies. 31 , 32 Patients with COPD may live long with advanced disease and severe breathlessness, whereas survival time is typically shorter among patients with end-stage ILD.…”

“…Symptom-alleviating medications are less often used in patients with nonmalignant diseases, and they undergo more diagnostic tests and invasive ventilation during the last year of life compared with cancer patients. 12 , 13 , 19 Specialist palliative care may decrease the number of emergency department visits, hospitalization, and end-of-life costs, but the quality of evidence is low and the most effective ways to integrate palliative care in the care of nonmalignant pulmonary diseases remain unknown. 20 …”

Impact of end-of-life respiratory modalities on quality of dying and death and symptom relief in patients with interstitial lung disease: a multicenter descriptive cross-sectional study

“…Therefore, these findings cannot be directly applicable to all patients with ILD. However, we believe the findings of this study have a degree of external validity since many patients with ILD, regardless of culture or region/countries, have been reported to die in a hospital setting [ 34 ]. Second, selection bias became a concern as the response rate was moderate (i.e., 45%).…”