227 Dying in the preferred place

Abstract

<h3>Aims</h3> Many children with life-limiting conditions (LLC) die in hospital (1) but to what extent this is out of choice by the child and family remains unknown. A general assumption is made that people prefer to die at home, but evidence is lacking in children to support this view (2). This study therefore aimed to: • Review where the children under Tŷ Hafan Children’s Hospice and/or the Paediatric Palliative Care (PPC) service in South Wales are dying. • Ascertain how often death in the preferred place is attained when their preference is known. • Identify the barriers and facilitators to providing end-of-life (EoL) care and attaining death in the preferred place for children with LLC. • Guide the hospice in improving their support of families in their chosen place of care. • Add to the current knowledge around preferred place of death (POD) for children with LLC. <h3>Methods</h3> Retrospective data analysis of patients (n=91) between the ages of 0-18 who died in 2018 and 2019, under Tŷ Hafan and/or PPC service in South Wales, was undertaken. Data was collected from the Tŷ Hafan and the All-Wales PPC Managed Clinical Network databases, and the advance care plan, where existent. This included actual and preferred (if known) POD. Where death was recorded to have occurred outside their preferred place, retrospective case review was carried out to identify possible barriers to attaining their preference. <h3>Results</h3> Preferences were known in 66% of cases and, overall, showed even distribution across hospice (33%), home (36%) and hospital (31%). Of these, 88% of children attained their preferred POD. Figure 1 illustrates the preferred and actual POD and to what extent their preferences were attained. Amongst the Tŷ Hafan service users, hospice was the most popular (43%) choice, followed by hospital (31%) and home (23%) [figure 2]. Hospice death was achieved in 78% of cases when it was their preference. The majority (71%) died in hospital when preferred POD was unknown. Seven children were identified to have died outside of their preferred place. The main barriers identified for attainment of preference were acute clinical deterioration and a lack of rapidly responsive community nursing services that can support children dying at home who deteriorate unexpectedly. <h3>Conclusion</h3> It is usually possible to facilitate death in the preferred place for children under hospice and palliative care services. There is scope for the children’s hospice to help facilitate dying in the preferred place more by supporting existing community nursing services, as well as promoting advanced care planning. Many life-limited children continue to die in hospital, and this is most likely when preference is unknown, suggesting hospital to be the default option for EoL care. <h3>References</h3> Arch Dis Child. 2020;106(8):780–5. Gibson-Smith D, Jarvis SW, Fraser LK. Palliat Med. 2013;27(8):705-13. Bluebond-Langner M, Beecham E, Candy B, Langner R, Jones L.