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Critically examining the experience of end of life care for people with interstitial lung disease: views of patients, families and healthcare professionals

Lookup NU author(s): Dr Evelyn Palmer, Dr Anne-Marie Bourke, Dr Shelina Visram, Dr Ian Forrest, Professor Catherine Exley


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Introduction People with interstitial lung disease (ILD) have a high symptom burden at the end of life and the majority die in hospital.Aims To explore patients’ and their relatives’ experiences of end of life care in ILD. To explore potential barriers preventing access to palliative care services and develop a theoretical framework that captures the experience of dying with ILD.Method Twenty semi-structured interviews have been conducted to date with patients with ILD, bereaved carers and healthcare professionals. Interviews are transcribed verbatim and data analysis is undertaken concurrently with data generation using Grounded Theory.Results Data generation and analysis is ongoing. Candidate themes identified from the data are 1) Hidden illness, 2) Preparing for dying, 3) The important bit – final days and hours, 5) Lasting memories. These themes are likely to develop further with additional data from subsequent interviews. There is often a dichotomy between what information is wanted by relatives towards the end of life and what people with ILD are happy to discuss. Recognition of dying is important to allow the opportunity for advance care planning for people who wish to have these discussions. Symptom control and family presence at the end of life has an impact of bereaved relatives’ lasting memories. The covid-19 pandemic has heavily influenced these factors and highlighted deficiencies in the existing services.Conclusion The uncertain prognosis associated with ILD leads to avoidance of advance care planning by both patients, relatives and healthcare professionals. This ongoing research project will add to the emerging body of evidence of the importance of timely end of life care in this patient group, which has many similarities to covid-19, namely respiratory symptoms, and the propensity to deteriorate suddenly.Impact This research will influence the design and delivery of palliative care services for people with ILD regionally and potentially opportunity to explore this nationally.

Publication metadata

Author(s): Palmer E, Bourke A, Visram S, Forrest I, Exley C

Publication type: Conference Proceedings (inc. Abstract)

Publication status: Published

Conference Name: The Marie Curie Research Conference Improving End of Life for All

Year of Conference: 2022

Pages: A13-A13

Print publication date: 11/02/2022

Acceptance date: 30/01/2022

ISSN: 2045-4368

Publisher: BMJ


DOI: 10.1136/spcare-2021-MCRC.32

Series Title: BMJ Supportive & Palliative Care