Background The HOT-HMV study in 2017 demonstrated that patients with persistent hypercapnia following an exacerbation of chronic obstructive pulmonary disease (COPD) who received home non-invasive ventilation (NIV) benefitted from prolonged time to readmission. Advance care planning (ACP) is recognised as being able to improve palliative care outcomes for patients with COPD. This study aimed to explore the benefits of and barriers to ACP in patients with COPD on home-NIV and how barriers might be addressed.
Methods Semi-structured qualitative interviews were conducted with health care professionals (HCP) from the North East Assisted Ventilation Service (NEAVS) (12 interviews) and with patients (11 interviews). Interviews were analysed using the principles of thematic analysis.
Results The findings emphasised the importance of ACP whilst also raising a number of challenges. NEAVS is a regional service therefore multiple local teams are also involved in patient care, resulting in a lack of clarity of responsibility for ACP conversations and geographical disparity with care continuity. HCP felt COPD patients were an under-served group both in medicine and society. They often have an uncertain disease trajectory resulting in difficulty in ascertaining appropriate timing for initiation of conversations. The patient group gave insights into the factors that affected their engagement in ACP discussions including high levels of anxiety and communication factors, notably a reduction in face-to-face consultations due to Covid-19.
Conclusions This study allowed us to map out many of the perceived challenges facing patients with COPD on home-NIV in carrying out meaningful and timely ACP. Being conscious of the challenges allows a deeper understanding and awareness of the importance of individualised ACP discussions. The study supports a review of the structure of similar services to formally incorporate ACP and assign responsibility. Formal palliative care involvement is also suggested, to provide both education for HCP and direct patient input.
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