Emergency care experiences of patients known to palliative care services and their family: A qualitative interview study

Background: With aging and comorbid populations and healthcare services under pressure, emergency department presentations related to palliative care needs are increasing. Little is known about patient and family experiences of care in this context. This study explores the emergency department care experiences of palliative patients and their family members.

Methods: Semi-structured interviews with patients known to palliative care services who had presented to an urban emergency department within the study recruitment period. Six patients and five family members were interviewed. Reflexive thematic analysis methodology was underpinned by social constructivism.

Findings: Participants often described misalignment between emergency care priorities and their own, which was sometimes associated with challenges, including dehumanisation. However, participants also shared stories of supported self-advocacy, associated with positive care experiences.

Conclusion: This research identifies challenges patients and their family experience when accessing emergency department care. Symptom management, time, environment, and advocacy were impactful aspects of patient and family experience. There is a need to develop and support palliative care skills and knowledge within EDs, and adapt the environment to provide a safe space for sensitive communication and person-centred care.