Original Publication
Open Access

A Child’s Last Hours—Multidisciplinary Training in End-of-Life Care in Children’s Hospitals: School-Aged Child With Terminal Cancer

Published: March 29, 2016 | 10.15766/mep_2374-8265.10371

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

  • But Shes Always Been Such a Fighter.mp4
  • Cancer Case Discussion Worksheet - Answer Key.docx
  • Cancer Case Discussion Worksheet.docx
  • Cancer Case Workshop Facilitator's Guide.docx
  • EOL Workshop Algorithm Card.pdf
  • EOL Workshop Self-Evaluation Tool.doc
  • Instructor's Guide Cancer.docx

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 three modules using a case-based approach to teach interprofessional learners about end-of-life (EOL) care in dying hospitalized patients. This module is specific to a school-aged child with terminal cancer, and addresses how to approach hospital-based care for this dying child and her family, from 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, with two facilitators from different disciplines. The ideal team for moderating this workshop includes 2-3 facilitators 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 the module provided in this publication. Our evaluation shows a clear improvement in confidence around the time of the workshop and data following inpatient deaths suggest that the workshop is applicable in the clinical realm.  As far as we know, it is the first structured workshop of its kind to address pediatric EOL care.


Educational Objectives

By the end of this session, the learner 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. Know doses and routes of at least one opioid to use for pain or dyspnea in a school-age child.
  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.
  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. Identify 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

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

Marks A, Hollenkamp E, Bradman S, et al. A child’s last hours—multidisciplinary training in end-of-life care in children’s hospitals: school-aged child with terminal cancer. MedEdPORTAL. 2016;12:10371. https://doi.org/10.15766/mep_2374-8265.10371