Children at the Intersection of Pediatric Palliative Care and Child Maltreatment: A Vulnerable and Understudied Population

J Pain Symptom Manage. 2021 Jul;62(1):91-97. doi: 10.1016/j.jpainsymman.2020.11.007. Epub 2020 Nov 14.


Context: Concerns for child maltreatment can complicate the provision of pediatric palliative care (PPC). Little is known about the vulnerable population of children with life-threatening conditions involved with PPC and state Child Protective Services (CPS) or hospital Child Protection Teams (CPTs). More information is needed to inform and optimize collaborative care.

Objectives: Define and describe the population of children with PPC involvement for whom there was concern for maltreatment.

Methods: Single-center retrospective chart review of children with PPC involvement for whom there was concern for maltreatment, defined as involvement of CPS/CPT between 2005 and 2017. Medical and demographic variables were abstracted and analyzed. Analyses include descriptive tabulation and measurements of association between PPC and CPS/CPT variables.

Results: Among 1804 children followed by PPC, 189 (10.4%) had documented CPS/CPT involvement. Among those, 113 (60%) had CPT involvement, 88 (47%) had concerns of medical neglect, and 100 (53%) had simultaneous CPS/CPT and PPC involvement. Goals of PPC consultation varied by clinical characteristics and concerns for medical neglect. Frequency of CPT involvement and physical abuse concerns also varied by child clinical characteristics.

Conclusion: PPC practitioners regularly encounter children with CPS/CPT involvement. PPC practitioners should be aware of the risk of maltreatment in their patients. Although rare in the general pediatric population, medical neglect is a relatively frequent maltreatment concern in children cared for by PPC. PPC practitioners have an opportunity to aid in proper evaluation of medical neglect in children they care for. Closer PPC collaboration with CPS/CPT may further optimize care.

Keywords: Maltreatment; child abuse; children; life-threatening condition; pediatric palliative care.

MeSH terms

  • Child
  • Child Abuse*
  • Family
  • Hospice and Palliative Care Nursing*
  • Humans
  • Infant
  • Palliative Care
  • Retrospective Studies