Original Publication
Open Access

A Child’s Last Hours—Multidisciplinary Training in End-of-Life Care in Children’s Hospitals: Adolescent With Cystic Fibrosis

Published: March 29, 2016 | 10.15766/mep_2374-8265.10372

All appendices are peer reviewed as integral parts of the Original Publication.

  • CF Case Discussion Answer Key.docx
  • CF Case Discussion Worksheet.docx
  • CF Case Facilitator guide.docx
  • EOL Workshop Algorithm Card.pdf
  • EOL Workshop Self-Evaluation Tool.doc
  • Instructors Guide Cystic Fibrosis.docx
  • Tell Mom I'm Not Afraid to Die.mp4

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.

Abstract

Introduction: This resource is one of a three-module workshop using a case-based approach to teach interprofessional learners about end-of-life (EOL) care in dying hospitalized patients. This module is specific to an adolescent with end-stage cystic fibrosis and how to approach hospital-based care for this dying child and her family, encompassing symptom management and anticipatory EOL guidance to performing a death exam and debriefing. Methods: The module includes video, questions/answers, and a pocket card. Ideally, the group of learners should consist of seven to 10 learners from a multidisciplinary background including but not limited to nurses, physicians, social worker, spiritual care providers, and respiratory therapists. The ideal team for moderating this workshop includes 2-3 individuals, preferably with differing professional backgrounds, who have comfort and familiarity with pediatric EOL. Results: At our institution, from 2010-2013, we presented our workshop to over 200 nurses, medical students, house officers, fellows, respiratory therapists, social workers, and spiritual care providers. Participants completed a 16-item retrospective posttest to assess confidence in knowledge and skill domains important in caring for dying children. Eighty-six percent of those surveyed agreed or strongly agreed that the workshop “helped me participate more effectively in the care of the patient as (s)he neared death.” Eighty-six percent also felt that the workshop “reduced the anxiety or stress I would otherwise have experienced in caring for the patient as (s)he neared death.” Discussion: This workshop has been refined over the past five years of implementation to reflect this current module. Our evaluation shows a clear improvement in confidence corresponding with the workshop, and data following inpatient deaths suggest that the workshop is applicable in the clinical realm. To the authors’ knowledge, it is the first structured workshop of its kind to address pediatric EOL care.


Educational Objectives

By the end of this module, 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 end-of-life (EOL).
  2. Assess and learn dosing and routes of at least one opioid to use for pain or dyspnea in an adolescent.
  3. Identify phrases that can reassure staff and families that use of opioids can be safe and appropriate in EOL care.
  4. Distinguish delirium from agitation near the EOL.
  5. Identify sources of agitation in a dying patient.
  6. Describe at least one pharmacologic and one nonpharmacologic method to treat agitation near the EOL.
  7. Learn to provide anticipatory guidance about what physical symptoms to expect during the dying process.
  8. Demonstrate phrases that may comfort family members.
  9. Discuss ways that families may be able to create valuable memories.
  10. Learn key steps in performing a death exam.
  11. Review postmortem expectations and care plan.

Author Information

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

Disclosures
None to report.

Funding/Support
None to report.


References

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  2. Donoghue AJ, Durbin DR, Nadel FM, Stryjewski GR, Kost SI, Nadkarni VM. Effect of high-fidelity simulation on Pediatric Advanced Life Support training in pediatric house staff: a randomized trial. Pediatr Emerg Care. 2009;25(3):139-144. http://dx.doi.org/10.1097/PEC.0b013e31819a7f90
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  6. National Consensus Project for Quality Palliative Care. Clinical Practice Guidelines for Quality Palliative Care. 2nd ed. Pittsburgh, PA: National Consensus Project for Quality Palliative Care; 2009.
  7. Physicians’ Handbook on Medical Certification of Death: 2003 Revision. Hyattsville, MD: National Center for Health Statistics; 2003. DHHS publication (PHS) 2003-1108.
  8. Truog RD, Burns JP, Mitchell C, Johnson J, Robinson W. Pharmacologic paralysis and withdrawal of mechanical ventilation at the end of life. N Engl J Med. 2000;342(7):508-511. http://dx.doi.org/10.1056/NEJM200002173420712
  9. Truog RD, Cist AF, Brackett SE, et al. Recommendations for end-of-life care in the intensive care unit: the Ethics Committee of the Society of Critical Care Medicine. Crit Care Med. 2001;29(12):2332-2348. http://dx.doi.org/10.1097/00003246-200112000-00017
  10. Wrede-Seaman L. Pediatric Pain and Symptom Management Algorithms for Palliative Care. Seattle, WA: Intellicard; 2005.


Citation

Murphy T, Saul D, Hollenkamp E, et al. A child’s last hours—multidisciplinary training in end-of-life care in children’s hospitals: adolescent with cystic fibrosis. MedEdPORTAL. 2016;12:10372. https://doi.org/10.15766/mep_2374-8265.10372