Original Publication
Open Access

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

Published: June 11, 2015 | 10.15766/mep_2374-8265.10108

Included in this publication:

  • Newborn EOL Workshop Instructor's Guide.docx
  • Newborn with Captions.mp4
  • Newborn Case Discussion Worksheet.docx
  • Newborn Case Discussion Answer Key.docx
  • EOL Workshop Pocket Card.pdf
  • EOL Workshop Self-Evaluation Tool.doc

To view all publication components, extract (i.e., unzip) them from the downloaded .zip file.

Editor's Note: This publication predates our implementation of the Educational Summary Report in 2016 and thus displays a different format than newer publications.


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.

Educational Objectives

By the end of this session, learners will be able to:

  1. Recognize the sources of distress in the patient, family, physicians, nurses, and other support staff in providing care at the end of life (EOL).
  2. Know doses and routes of at least one opioid to use for pain or dyspnea in a neonate.
  3. Identify phrases that can reassure staff and families that use of opioids can be safe and appropriate in EOL care.
  4. Understand and explain the benefits versus burdens of artificial hydration and nutrition at the EOL.
  5. Identify one intervention for decreasing bothersome secretions.
  6. Learn to provide anticipatory guidance about what physical symptoms to expect during the dying process.
  7. Demonstrate phrases that may comfort family members.
  8. Discuss ways that families may be able to create valuable memories.
  9. Learn key steps in performing a death exam.
  10. Review postmortem expectations and care plan.

Author Information

  • Patricia Keefer, MD: University of Michigan Medical School
  • Ken Pituch: University of Michigan Medical School
  • Terry Murphy: University of Michigan Medical School
  • James Azim: University of Michigan Medical School
  • Cecilia Trudeau: University of Michigan Medical School
  • Matthew Niedner: University of Michigan Medical School
  • D'Anna Saul: University of Michigan Medical School
  • Adam Marks: University of Michigan Medical School
  • Katie Lehmann: University of Michigan Medical School
  • Elizabeth Hollenkamp, BSN: University of Michigan Medical School
  • Maureen Giacomazza: University of Michigan Medical School

None to report.

None to report.


Keefer P, Pituch K, Murphy T, et al. A child’s last hours — multidisciplinary training in end-of-life care for professionals working in children’s hospitals: newborn with lethal congenital anomalies. MedEdPORTAL. 2015;11:10108. https://doi.org/10.15766/mep_2374-8265.10108