The timing, duration, and management of symptoms of children with an incurable brain tumor: a retrospective study of the palliative phase

Abstract Background A brain tumor is diagnosed in 25% of pediatric oncology patients and carries a 30% mortality rate. To increase proactive support of children with a progressive brain tumor, we obtained information on timing, duration, and management of symptoms in the palliative trajectory. Methods A retrospective review of medical charts of patients treated at a children's university hospital, who were dying from a brain tumor between May 2007 and September 2012. Results Thirty-four children were included. After 0–2480 days (median, 168 days) from initial diagnosis, incurable disease was evident, with death occurring after 1–603 days (median, 80 days). Palliative cancer-directed therapy was given to 23 (68%) patients. Early presenting symptoms were altered mobility, speech disorders, and loss of sight or hearing. The symptoms with the shortest duration were somnolence, dysphagia, and dyspnea. The most frequent symptoms were pain (91%), poor mobility (74%), and somnolence (71%). Pain necessitated a short period of intravenous treatment with morphine in 38% of patients, for a median 4 days, and sedation in 15%, for a median 2.5 days. Do-not-resuscitate agreements were discussed with all parents at 0–576 days before death (median, 50 days) and were agreed upon by 33 (97%) parents. Twenty-seven (79%) patients died at home, and one died in a hospice. Six (18%) patients were admitted for intravenous anticonvulsants, pain medication, and sedation until death. Conclusions This study reports specific information on the timing of occurrence and duration of symptoms. This information will provide support for pediatric oncologists in preparing parents and primary health care professionals and anticipating symptom management and timely end-of-life decision-making in the palliative care phase for children with a brain tumor.