P-80 Transition in reality: end of life care for an adolescent with huntington’s in an adult hospice

Abstract

Background A 17 year old with juvenile onset Huntington’s chorea was admitted to an adult hospice in Northern Ireland for symptom management and possible end of life care. The patient had been known to adult palliative care services in the?local hospital for approximately 10 months while under the care of the paediatric team and GP. The potential need for hospice admission for end of life care was recognised, but the nearest children’s hospice was far away and so admission to the local adult hospice was explored and facilitated. Aim To provide the adolescent patient and family with local hospice care. Methods A timebound, patient-named application for variation of age registration was successful with the Regulation and Quality Improvement Authority. The admission was planned collaboratively between paediatric and adult palliative care services. This joint-working continued following admission to the adult hospice. Outcome The initial move to the adult hospice presented challenges including recognition of dying in an adolescent; the patient’s limited communication and distressing symptoms; adjustment of family to a different care setting; staff anxieties with looking after a dying adolescent. Symptoms were more controlled and the patient died, with family there, almost two weeks following admission. Conclusion Flexibility by adult hospices regarding age restriction can help dying adolescents and their families to have access to inpatient hospice services when children’s hospices are far away. This may become more relevant as patient numbers increase (Together for Short Lives, 2015). Good communication and collaborative working by paediatric and adult palliative care services are crucial in overcoming the challenges, easing staff anxiety and in maintaining the young person at the centre.