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Abstract
Around 5,800 children and neonates (aged 0-19) and 10,400 young adults (aged 20-39) die yearly in England (1). Holistic, family led care can be provided by a hospice for such individuals, complementing and augmenting hospital and community care.
A review assessing appropriateness and type of palliative care referrals to a single Children and Young Person's Hospice within the UK was undertaken. All referrals to the hospice from July 2009 to June 2011 inclusive were classified according to referrer type, patient demographics, referral outcome and ACT category.
180 referrals were made to the hospice in the 2 year period. Of these 158 were accepted and 22 rejected. Of the total referrals 60% were made by a hospital doctor (most often a consultant), 27% by a hospital/community/outreach nurse, 5% by a family member, 2.8% by an allied health professional, 2.8% by a social worker, 2.8% by a support worker and 1.1 % by the GP.
Of those referred 8% were neonates, 24% were aged between >28 days and 1 year, 17% >1 to 3, 12% >3 to 5, 11% >5 to 8, 12% >8 to 11, 7% >11 to 15, 8% >15 to 19 and 1% (n=2) >19 years. There were 2 antenatal referrals.
Of those accepted referrals 30% were ACT category 1, 2.5% category 2, 39% category 3 and 28% category 4.
Of the referrals not accepted 14% were ACT category 1, 4.5% category 2, 18% category 3 and 63% category 4.
Conclusions
▶ Most referrals were made by hospital doctors, though a broad range of referrers was seen including family members.
▶ Most children referred to the hospice were 5 years of age or under (61%) and of these over half are <1 year of age (52%).
▶ The accepted referrals were spread evenly across ACT categories 1, 3 and 4 (N.B. Duchenne muscular dystrophy was classified as category 3 within this review).
▶ Children and young people in ACT category 4 were most likely to have their referral rejected. These children, despite having complex care needs, are not considered to need hospice input until a pattern of progressive decline is observed.