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Abstract
Background Estimating the local population needs for children’s palliative care services can prove challenging. Data has shown that most children die in hospital and not all children with life-limiting conditions (LLC) are known to local hospices at their time of death (Williams & Horsley, 2015). A recent survey conducted by Noah’s Ark of North London Paediatric teams, showed that 90% of those surveyed had looked after patients with LLC and not referred them on to their local hospice (Opstad, 2021).
Epidemiological studies have sought to estimate the prevalence within local populations (Williams & Horsley, 2015) of children with LLC, looking at NHS digital data (Fraser, Gibson-Smith, Jarvis, et al., 2020. Palliat Med.) from hospital admissions (Health & Social Care Information Centre, 2015). These estimations, however, come with limitations.
Aims
Identify the causes and locations of child deaths in the local population.
Determine which children would have potentially met criteria for hospice referral.
Design Records of local death data were analysed, with specific reference to cause and location of death and past medical history which would have made them eligible for hospice care.
Results Over the six-year period analysed there were an average of 26 deaths per year from all causes.
Between 5 and 18 children were found to meet hospice referral criteria each year (an average of 10 per year). 139 of the 154 total deaths occurred in hospital (90%) from all causes, but 43 (28%) of those deaths were in children with LLC and were expected. Just 19 children (12%) had a planned death at home or in a hospice setting over the six-year period analysed.
Conclusions This data supports the hypothesis from epidemiological studies that there is unmet need within the local population. Some families may choose for their child to die in a hospital, and it is difficult to scrutinise this element of choice in retrospective data analysis. However, there is clearly need for greater awareness amongst paediatric teams and families of the services offered by local hospices.