Abstract
Introduction: Delivery of end-of-life care for severe chronic obstructive pulmonary disease (COPD) has been hampered by an unpredictable disease trajectory and poor integration of health care and social services.
Objective: To critically explore the perspectives, values, and experiences of stakeholders in COPD end-of-life healthcare services in a large district in Aotearoa New Zealand.
Design: Focus groups analysed utilising critical theory and Actor-Network Theory.
Methods: Stakeholders in end-of-life COPD healthcare services were purposively sampled from a large healthcare network in Canterbury, Aotearoa New Zealand to participate in seven focus groups (bereaved carers, community-based health professionals, non-Maori, non-Pacific patients, and support people (two groups), Maori patients, supporters and health professionals, Pacific patients, support people and health professionals, and hospital-based health professionals). Participants discussed end-of-life care services for people with COPD. Transcripts were coded utilising descriptive and structural coding to develop themes related to provision of quality care. Participants were positioned as experts. We considered how the themes arising supported and disrupted the healthcare network for end-of-life COPD.
Results: Five themes related to quality of care for end-of-life COPD were identified: compassion, competence, community, commitment, and collaboration. The absence of any of these five themes required for quality care led to power imbalances within healthcare systems. Power inequities created disconnection among stakeholders which then disrupted commitment, community, and collaboration. A dysfunctional healthcare network impeded compassion between stakeholders and did not support their competence, leading to lower quality care. All five themes were identified as essential to delivery of high-quality end-of-life care in COPD.
Conclusion: Stakeholders' perspectives of end-of-life care for COPD identified of core features of a health system network that enabled or impeded the actions of stakeholders and allocation of resources to provide quality care.