Diffuse midline glioma (DMG) is an incurable brain tumour of childhood; tumour tissue is desperately needed to improve understanding of this disease. A recent study presented the experience of DMG families participating in post-mortem tumour donation (PMTD), with their reflection on benefits encompassing fundamental tenets of palliative care, including legacy and meaning-making. Less beneficial aspects, including feeling ‘rushed’ to surrender their child’s body for the procedure and the difficulty of obtaining information about PMTD in a timely way, might be ameliorated by the participation of palliative care professionals in this experience. 

Aim

Our study aimed to understand the practice of PMTD in a single facility, and to understand the feasibility of palliative care practitioners offering PMTD to eligible families under their care.

Methods

A retrospective chart audit of children with DMG or similar incurable brain tumours, participating in or eligible for PMTD over an eight year period at a single institution, was conducted. Demographic data, the presence and timing of these patient’s involvement with palliative care providers, and the details and logistics of their PMTD where present, were gathered.

Results and Conclusions

Fifty-two children eligible for PMTD over the study period were identified, of whom 14 underwent the procedure. In those undergoing PMTD, tumour cell viability was shown to be maintained up to 96 hours post-mortem. Death at home, in hospice or in a regional setting were not barriers to participation in PMTD. Ninety-six percent of families were introduced to palliative care prior to their death. In 68% of cases, palliative care encounters with families outnumbered oncology encounters by >/=10:1 in the month prior to death. It is feasible that palliative care clinicians may partner with oncologists in presenting the option of PMTD to families well in advance of death, to allow unhurried reflection on consent as well as logistical preparation for the procedure.