The experience of palliative care service provision for people with non-malignant respiratory disease: an all-Ireland qualitative study
Background/aim: Palliative care is recommended for people with advanced non- malignant lung disease. Yet there is limited evidence regarding the integration of palliative care for people with interstitial lung disease, bronchiectasis and COPD. This study aimed to explore the experience of palliative care provision for people with non-malignant respiratory disease and their bereaved carers. Methods: Qualitative study involving a convenience sample of 17 bereaved carers and 18 healthcare professionals recruited from 2 rural and 2 urban sites in the North and Republic of Ireland. Data collection consisted of 17 semi-structured interviews with carers of patients with COPD, interstitial lung disease or bronchiectasis who had died 3-18 months previously; and 4 focus groups with healthcare professionals. Data were analysed using thematic analysis. Findings: Key findings included: 1) The adverse impact of geographical location on local palliative service provision, not only due to rurality but also health jurisdiction; 2) Lack of consensus amongst healthcare professionals regarding when specialist and generalist palliative care is appropriate for patients with non-malignant respiratory disease; 3) The unpredictable nature non-malignant respiratory disease caused uncertainty about illness progression amongst all participants, especially carers who experienced a lack of awareness of the life limiting nature of the disease. Conclusions: The management of patients with non-malignant respiratory disease is complex and challenging with a clear need for a more integrative model of practice, incorporating palliative care in a responsive and dynamic way. This research informed a potential model of care which may help healthcare professionals introduce palliative care, and specialist respiratory care, early in the disease trajectory. This model also encourages the involvement of specialist palliative care for complex symptom management.
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