Pediatric palliative care in patients with brain tumors: Timing, activation, and management of acute events

The highest percentage of our patients referred to Pediatric Palliative Care (PPC) are those with brain tumors. Of these, we analyzed PPC activation modes and timing, occurrence of acute events during the period of PPC activation, and the time between acute event and death.

During the period 1 January 2010 to 31 October 2023 approximately 1000 Cranial Nervous System (CNS) tumor patients were treated at Fondazione IRCCS Istituto Nazionale dei Tumori in Milan. All records of patients with CNS tumors who were treated and who died during this period were retrieved and retrospectively analyzed.

Data on 107 patients were retrieved. At the time of being taken over by PPC service, 32 patients were at diagnosis stage and 75 were beyond first-line of treatment. At diagnosis, 31 patients had already undergone surgery for placement of a ventriculoperitoneal shunt due to acute intracranial hypertension (IH). Twenty-nine out of 107 patients suffered an emergency while already managed by PPC service. In 18 out of 29 cases, emergency was an acute IH episode. Median time from diagnosis to PPC activation and from diagnosis to death (Overall Survival) were 12.1 months (6.2-27.3) and 16.7 months (10.8-31.1), respectively. Sixty-two patients died at home, 32 were admitted to and died in the referring hospice, 13 died in different hospitals.

Management of a “complex” pediatric patient with an unfavorable prognosis requires early activation of PPC, with a seamless continuation of the already existing partnerships between family, pediatric-oncology team, referring neurosurgeon and palliative care teams.