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Journal of Neuro-Oncology

, Volume 138, Issue 1, pp 147–153 | Cite as

End-of-life care of children with diffuse intrinsic pontine glioma

  • Fyeza HasanEmail author
  • Kevin Weingarten
  • Adam Rapoport
  • Eric Bouffet
  • Ute Bartels
Clinical Study

Abstract

The end-of-life management of children with diffuse intrinsic pontine glioma (DIPG) is challenging. Families cope with debilitating symptoms and make complex decisions regarding their child’s care. However, there is little evidence guiding palliative care provision for these children. Our objective was to describe the dying trajectory of children with DIPG, their symptoms, the care they require and the end-of-life decisions made for them. This retrospective cohort study analyzed the end-of-life care of 41 consecutive patients with DIPG who died between January 2001 and June 2010. All patients died of disease progression, experiencing a significant symptom burden prior to death. Despite this, the majority of patient days at the end of life were spent at home. However, 60% of patients were hospitalized at least once in their final 3 months, often close to the time of death. A wide range of healthcare professionals were involved, providing a range of medicinal/non-medicinal interventions. Chemotherapy was given to 30% of patients in their final month. Thirty of 33 families approached (91%) agreed to a “Do not resuscitate” order. A small subset of families opted for intensive treatment towards the end of life including cardiopulmonary resuscitation, intensive care admission and mechanical ventilation. Children with DIPG have complex needs and require intensive multidisciplinary support. This paper describes the end-of-life choices made for these children and discusses how these choices influence our institutional model for palliative care. We believe this approach will be useful to clinicians caring for similar patients.

Keywords

Diffuse intrinsic pontine glioma (DIPG) Pediatric oncology End-of-life care Palliative care 

Notes

Compliance with ethical standards

Conflict of interest

The authors declare that they have no conflict of interest.

Ethical approval

All procedures were in accordance with the ethical standards of the institutional research committee and with the 1964 Helsinki declaration. For this type of study, formal consent is not required.

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Copyright information

© Springer Science+Business Media, LLC, part of Springer Nature 2018

Authors and Affiliations

  1. 1.Paediatric Neuro-Oncology Program, The Hospital for Sick ChildrenUniversity of TorontoTorontoCanada
  2. 2.Paediatric Advanced Care Team, The Hospital for Sick ChildrenTorontoCanada

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