HG-65END-OF-LIFE CARE OF CHILDREN WITH MALIGNANT PONTINE TUMOURS

Abstract

Background: Children with diffuse intrinsic pontine gliomas and other malignant pontine tumours (MPT) face a dismal prognosis. Objectives: To describe (1) the course of children dying of MPT; (2) symptoms experienced and management strategies employed; (3) health professionals involved and interventions provided; (4) decision-making regarding end-of-life care. Methods: This retrospective cohort included 41 of 48 consecutive children diagnosed under 18, who died between January 2001 and June 2010 with MPT, at a single institution. Disease-specific treatment and decision-making from initial diagnosis and symptoms/interventions/resources used in the final 3 months of palliation were studied. Results: 95% received radiation and/orsurgery/chemotherapyatdiagnosis,whilst54%weretreatedforprogression. Ventriculoperitoneal shunts were placed in 5 patients (n = 2 in the final 3 months of life). A small subset received invasive/non-invasive (n = 4/n = 1) mechanical ventilation in their last 3 months. 68% agreed to a do-not-resuscitate order, instituted a median of 28 days before death. All patients experienced symptoms at the end-of-life, with ambulatory difficulties/dysphasia/dysphagia/visual impairment/fatigue affecting 70 to 90%. No child was given palliative sedation. A mean of 6.2 multidisciplinary teams were involved/patient. 39% were managed by a paediatric oncologist. The remaining patients were managed by family doctors/paediatricians/palliative care physiciansandintensivists. 51% werereferredtoa specialistpalliativecare team. The majorityofpatients received in-home palliation, and56% died at home. 30% hadan autopsy. Conclusions:Thisstudydetailsthechallengingpalliativecourseofchildren dying of MPT.It will beofvalue to physicians managing complex symptoms and guiding end-of-life decision-making.