Introduction Chronic obstructive pulmonary disease (COPD) is a chronic progressive condition with high symptom-burden. National guidance calls for quality end-of-life care for patients with any condition, yet we rely on frameworks developed for cancer with its largely predictable trajectory.
Aim To inform a new framework to improve care and support in advanced COPD.
Methods The Living with Breathlessness Study was a multiple-component, population-based, mixed-method longitudinal, multiple-perspective programme to identify new evidence on health and social care needs and preferences of patients with advanced COPD and their carers. It followed more than 500 patients and carers for up to 18 months through interview and survey methods. Qualitative data on barriers and facilitators to meeting needs were collected from clinicians. Programme-wide evidence was synthesised to identify recommendations. Stakeholder views were then collected through a workshop and online survey.
Results Six inter-related recommendations emerged, linked by the concept of proactive person-centred care, supported by action points to enable delivery. In brief: (1) stop focusing on the challenge of prognostication as a barrier to meeting need, (2) change targets to incentivise person-centred care, (3) enable identification of patient support needs, (4) identify and support carers, (5) identify and respond to psychological morbidity, (6) change societal understandings. The recommendations garnered significant support from stakeholders, with caution regarding ease of implementation.
Conclusion These recommendations could inform a new framework for care and support in advanced COPD likely to have resonance for those living with other advanced non-malignant long term conditions, and clinicians striving to support them.
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