MedEdPORTAL (Jun 2015)

A Child's Last Hours—Multidisciplinary Training in End-of-Life Care for Professionals Working in Children's Hospitals: Newborn With Lethal Congenital Anomalies

  • Patricia Keefer,
  • Ken Pituch,
  • Terry Murphy,
  • James Azim,
  • Cecilia Trudeau,
  • Matthew Niedner,
  • D'Anna Saul,
  • Adam Marks,
  • Katie Lehmann,
  • Elizabeth Hollenkamp,
  • Maureen Giacomazza

DOI
https://doi.org/10.15766/mep_2374-8265.10108
Journal volume & issue
Vol. 11

Abstract

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Abstract Introduction In children's hospitals in North America, anticipated deaths far outnumber deaths following failed attempts to resuscitate. Physicians, nurses, and respiratory therapists regularly undergo training, certification, and recertification in cardiopulmonary resuscitation and advanced life support. However, there is no analogous training required in the care of children who will die following orders to not attempt resuscitation or the care of those who die following withdrawal of life support. Variability in approach to these anticipated deaths often leads to undue suffering of patients, parents, and members of professional care teams. This resource is part of a three-module workshop using a case-based approach to teach interprofessional learners about end-of-life (EOL) care in dying hospitalized patients. Each of these modules can be used as stand-alone resources for specific subsets of learners or be combined for a more comprehensive workshop. The three modules discuss the following cases: a newborn with lethal congenital anomalies, an adolescent with end-stage cystic fibrosis, and a pediatric patient with terminal cancer. Methods This module is specific to a newborn with lethal congenital anomalies and considers how to approach hospital-based care for this dying child and his parents, from symptom management and anticipatory EOL guidance to performing a death exam and debriefing. Video, questions, answers, and pocket card are included to implement the 2-hour workshop. Ideally, the group of seven to 10 participants should consist of learners from a multidisciplinary background including, but not limited to, nurses, physicians, social worker, spiritual care providers, and respiratory therapists, with two facilitators from different disciplines. Given the topic matter and goal of open discussion, this is an ungraded exercise in our institution. Results From 2010-2013, we presented this workshop at our institution to over 200 nurses, medical students, house officers, fellows, respiratory therapists, social workers, and spiritual care providers. Additionally, the workshop has been presented to 135 participants in small-group format at multiple national conferences. Discussion Since 2013, the workshop has become an institutional training requirement for house officers and is strongly supported among other disciplines. For this reason, we have developed a model that arranges multiple modules into a longer workshop to maximize scheduling feasibility for many multidisciplinary learners. The first of these was held in September 2012, and 22 residents, 11 fellows, and 30 nurses participated.

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