Introduction People with interstitial lung disease 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 interstitial lung disease. To explore potential barriers preventing access to palliative care services and develop a theoretical framework that captures the experience of dying with interstitial lung disease.
Methods Fifteen semi-structured interviews have been conducted to date with patients with interstitial lung disease, 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 but will be completed by March 2021. 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 interstitial lung disease 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.
Conclusions The uncertain prognosis faced by many people with interstitial lung disease 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.
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