Background There is limited knowledge regarding the quality of dying and death (QODD) and end-of-life interventions in patients with interstitial lung disease (ILD). Hence, differences in QODD and end-of-life interventions between patients with ILD and those with lung cancer (LC) remain poorly understood.
Methods The primary aim of this study was to explore the differences in QODD and end-of-life interventions among patients dying with ILD versus those dying with LC. We performed a mail survey to quantify the QODD of a bereaved family’s perspective using the Good Death Inventory (GDI) score. Moreover, we examined the end-of-life interventions by medical chart review.
Results Of 361 consecutive patients analysed for end-of-life interventions, 167 patients whose bereaved families completed questionnaires were analysed for QODD. Patients with ILD had lower GDI scores for QODD than those with LC (p=0.04), particularly in domains related to ‘physical and psychological distress relief’ and ‘prognosis awareness and participation in decision making’ (p=0.02, respectively). In end-of-life interventions, patients with ILD were less likely to receive specialised palliative care services (8.5% vs 54.3%; p<0.001) and opioids (58.2% vs 73.4%; p=0.003). Additionally, lower frequencies of participation of patients with ILD in end-of-life discussion were also observed (40.8% vs 62.4%; p=0.007).
Conclusion Patients with ILD had lower QODD and poorer access to palliative care and decision making than those with LC. Additional efforts to improve QODD in patients with ILD, particularly in symptom relief and decision-making processes, are urgently warranted.
- interstitial fibrosis
- idiopathic pulmonary fibrosis
- palliative care
- lung cancer
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Contributors TK: conception and design, data collection, data analysis and interpretation, and manuscript writing. YS, KS: conception and design, data analysis and interpretation, manuscript writing, and final approval of the manuscript. HH, MK, KF, TF, NE, YN, NI, KY, SI, HN: data collection, and data analysis and interpretation. TM: conception and design, data collection, and data analysis and interpretation. TS: manuscript writing, final approval of the manuscript and administrative support.
Funding The authors have not declared a specific grant for this research from any funding agency in the public, commercial or not-for-profit sectors.
Competing interests None declared.
Patient consent for publication Not required.
Ethics approval The study was approved by the ethics board of Hamamatsu University School of Medicine (approval number: 18-296), Seirei Hamamatsu Hospital (approval number: 3025), Seirei Mikatahara Hospital (approval number: 18-72) and Iwata City Hospital (approval number: 2019-001). The study procedures were carried out in accordance with the tenets of the Declaration of Helsinki.
Provenance and peer review Not commissioned; externally peer reviewed.
Data availability statement Participants of this study did not agree for their data to be shared publicly, so supporting data are not available.
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