Background Fibrotic interstitial lung disease is an incurable disease with poor prognosis. We aimed to understand factors affecting decisions regarding referrals to specialist palliative care services and to address barriers and facilitators to referrals from healthcare professionals’ perspectives.
Methods A survey study of healthcare professionals, including respiratory physicians, interstitial lung disease nurse specialists, respiratory nurse specialists and palliative care physicians, was conducted using a questionnaire, entailing 17 questions.
Results Thirty-six respondents, including 15 interstitial lung disease nurse specialists completed the questionnaire. Symptom control, psychological/spiritual support, general deterioration and end-of-life care were the most common reasons for referrals to specialist palliative care services. Most respondents felt confident in addressing palliative care needs and discussing palliative care with patients. A few participants emphasised that experienced respiratory nurse specialists are well placed to provide symptom management and to ensure continuity of patient care. Participants reported that access to palliative care could be improved by increasing collaborative work between respiratory and palliative care teams.
Conclusions Most respondents felt that enhancing access to specialist palliative care services would benefit patients. However, palliative care and respiratory care should not be considered as mutually exclusive and multidisciplinary approach is recommended.
- clinical decisions
- respiratory conditions
- education and training
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Contributors JWK conceived the study, designed study protocol, developed the survey, extracted data, analysed the data and drafted the manuscript. SO developed the survey and reviewed the manuscript. SJ, MT, A-MR and M-JJ reviewed study protocol and survey development and reviewed the manuscript. AW conceived the study, supervised designing review protocol and reviewed the manuscript. All authors discussed the results and contributed to the final manuscript.
Funding This questionnaire survey was funded by Norfolk and Norwich University Hospital Respiratory Research Funds.
Competing interests None declared.
Patient consent for publication Not required.
Ethics approval The study was approved by the Faculty of Medicine and Health Sciences Research Ethics Committee at University of East Anglia (Reference number 201819-016) and had Health Research Authority approval (IRAS ID 248634).
Provenance and peer review Not commissioned; externally peer reviewed.
Data availability statement Data are available upon request.
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