Parental Physical Proximity in End-of-Life Care in the PICU

JL Falkenburg*, Dick Tibboel, RR Ganzevoort, S.J. Gischler, Ko Hagoort, Monique van Dijk

*Corresponding author for this work

Research output: Contribution to journalArticleAcademicpeer-review

20 Citations (Scopus)

Abstract

Objective:

Health professionals in PICUs support both child and
parents when a child’s death is imminent. Parents long to stay
connected to their dying child but the high-tech environment and
treatment implications make it difficult to stay physically close.
This study explores in what sense physical aspects of end-of-life
care in the PICU influence the parent-child relationship.

Design:

Retrospective, qualitative interview study.

Setting:

Level 3 PICU in Erasmus Medical Center in the Netherlands.

Participants:

Thirty-six parents of 20 children who had died in this
unit 5 years previously.

Measurements and Main Results:

Parents vividly remembered the
damage done to the child’s physical appearance, an inevitable
consequence of medical treatment. They felt frustrated and hurt
when they could not hold their child. Yet they felt comforted if
facilitated to be physically close to the dying child, like lying with
the child in one bed, holding the child in the hour of death, and
washing the child after death.

Conclusions:

End-of-life treatment in the PICU presents both
a barrier and an opportunity for parents to stay physically connected to their child. Parents’ experiences suggest that aspects
of physicality in medical settings deserve more attention. Better
understanding of the significance of bodily aspects—other than
pain and symptom management—improves end-of-life support and
should be part of the humane approach to families. (Pediatr Crit
Care Med 2016; 17:e212–e217)
Original languageEnglish
Pages (from-to)E212-E217
JournalPediatric Critical Care Medicine
Volume17
Issue number5
DOIs
Publication statusPublished - 2016

Research programs

  • EMC MGC-02-53-01-A
  • EMC MM-03-54-04-A

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