Prognostic Awareness and Knowledge of Acute Exacerbation in Patients Dying with Interstitial Lung Disease: A Nationwide Survey

Rationale: Accurate prognostic awareness (PA) and knowledge of the disease are critical for decision-making regarding treatment options, advance care planning, and end-of-life care. However, they have not been investigated in patients with interstitial lung disease (ILD). Objectives: To determine the prevalence of patients with ILD who have accurate PA and/or knowledge of acute exacerbation and whether accurate PA is associated with end-of-life medical interventions and quality of dying and death. Methods: Through a nationwide bereavement survey, we examined the prevalence of accurate PA and knowledge of acute exacerbation (AE) in patients with ILD who died in acute general hospitals between January 2018 and February 2020. Patients' PA and knowledge were assessed from the perspective of the bereaved. We also quantified the quality of dying and death from the perspective of the bereaved using three scales-the Good Death Inventory, the Quality of Dying and Death questionnaire, and the single-item Quality of Dying and Death overall score-and obtained information on end-of-life interventions from the electronic medical record. We examined the associations of accurate PA with end-of-life interventions and quality of dying and death. Results: A total of 296 patients whose caregivers completed questionnaires were analyzed. One hundred sixty-three patients (55.1%; 95% confidence interval [CI], 49.2-60.8%) who died of ILD had accurate PA, and 138 (46.9%; 95% CI, 41.1-52.8%) recognized that their disease could have AE. Multivariate regression analysis showed that accurate PA was associated with significantly fewer intensive care unit deaths (odds ratio, 0.28; 95% CI, 0.10-0.82; P = 0.02). Patients with accurate PA had better quality of dying and death on all three scales. Conclusions: Approximately half of the patients who died of ILD did not recognize that their disease could lead to death or AE. The lower number of intensive care unit deaths and better quality of dying and death in patients with accurate PA suggest the potential benefits of obtaining accurate PA in patients with ILD.