Palliative care integration for patients with advanced chronic obstructive pulmonary disease (COPD) : An action research study

Fusi-Schmidhauser, Tanja and Preston, Nancy and Froggatt, Katherine (2020) Palliative care integration for patients with advanced chronic obstructive pulmonary disease (COPD) : An action research study. PhD thesis, Lancaster University.

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Abstract

Background: Chronic obstructive pulmonary disease (COPD) is a life-limiting condition where patients have palliative care needs. Despite increasing awareness about the role palliative care could play in care provision for patients with advanced COPD, integration in standard care remains underdeveloped. The disease unpredictability and misconceptions about palliative care being only relevant for patients in oncological settings and being equivalent to end-of-life care prevent a timely integrated approach in advanced COPD. Aim: To understand how to integrate palliative care provision for patients with advanced COPD in a respiratory care service in Southern Switzerland. Methods: A participatory action research approach was conducted in two sequential phases. Phase I explored the experiences and perceptions of five advanced COPD patients and five informal carers during the illness trajectory. Phase II focused on developing knowledge on palliative care integration in advanced COPD through six action research cycles with healthcare professionals working in both palliative (three healthcare professionals) and respiratory care settings (four healthcare professionals). Results: Living day to day with COPD, psychosocial dimension of the disease and management of complex care were the main themes identified in the first phase of the study. During the second phase key elements of integrated palliative care in advanced COPD such as multidimensional assessment, healthcare professionals’ education, interdisciplinary team meetings and knowledge dissemination were identified. These elements converged in a new integrated palliative care model for patients with advanced COPD. Conclusion: The new integrated palliative care model in advanced COPD includes essential elements with a focus on patients, healthcare professionals and care delivery. Further research on model testing in clinical practice, service development, implementation processes and possible outcomes, including evaluation of the financial impact of integrated palliative care provision is necessary to foster this care approach across all possible settings.