Abstract
Background: End of life healthcare and social services for people with severe chronic obstructive pulmonary disease (COPD) are poorly integrated on the background of an unpredictable disease trajectory. To inform healthcare services quality improvement, we critically analyse the perspectives and experiences of people with lived experience, their support people and health professionals regarding COPD end-of-life care services.
Methods: People with lived experience, their support people, and healthcare professionals within a healthcare system for end of life a COPD care in Aotearoa New Zealand participated in seven focus groups (bereaved support people, community- and hospital-based health professionals, Māori (Indigenous Peoples) and Pacific patients, supporters and health professionals, and non- Māori, non-Pacific patients, and their support people). We analysed data utilising descriptive and structural coding to identify themes related to provision of high quality care within a framework of critical theory and Actor-Network Theory. We considered how the themes arising from the data informed quality improvement of the healthcare network for end-of-life COPD.
Findings: Five themes related to quality of care for end-of-life COPD were identified: compassion, competence, community, commitment, and collaboration, constituting the principles for high quality healthcare for people with severe COPD. Within a critical theory lens, it was identified that these principles determined how power and resources were distributed within the healthcare system. Power centred inequitably within the healthcare network created disconnection among individuals and organisations, which in turn disrupted commitment, a sense of community, and the possibility to collaborate.
Discussion: Compassion, competence, community, commitment and collaboration were identified by participants as the key elements of high-quality service delivery within a healthcare system. These elements may help inform co-designed services in the future.