The Experiences of Being Discharged Alive from a Community Specialist Paediatric Palliative Care Service: A Qualitative Multiple-case Study

<title>Abstract</title> <p>Background While "live discharge" from palliative care is well-documented in adult populations, there is an absence of literature examining this phenomenon in paediatric palliative care. Children with life-limiting conditions often have prolonged and unpredictable illness trajectories, making discharge transitions challenging. Aim To explore stakeholder experiences of discharge from a community specialist paediatric palliative care service. Methods A qualitative multiple-case study design, underpinned by a critical realist paradigm, was conducted at the sole community paediatric palliative care service in Singapore. A "case" was defined as a child discharged from the service for at least six months. Semi-structured interviews were conducted with parental caregivers, hospital-based and community paediatric palliative clinicians. Data were evaluated using framework analysis. Results Discharge was experienced not as a discrete event, but as a complex process embedded within an uncertain illness trajectory. Five themes emerged: (1) Medical context: children continued to have complex needs despite clinical stability; (2) Nature of support: families described the loss of a “lifeline” upon discharge; (3) Decision-making and communication: clinicians' emphasis on resource stewardship contrasted with families' lived experiences of ongoing needs; (4) Emotional meanings: discharge was associated with mixed emotions and relational loss; and (5) Post-discharge: families demonstrated resilience and adaptation. Conclusion Discharge from paediatric palliative care is a complex and often distressing transition. Crucially, medical stability does not equate to a lack of vulnerability. Further research is needed to inform the development of sustainable care models that balance finite resources with the enduring needs of children and their families.</p>