Justin’s Story is part of Pediatric End-of-Life Case Studies, one of seven teaching modules drawn from the Emmy Award-winning documentary, A Lion in the House. A Lion in the House portrays an unprecedented, intimate look at the realities of childhood cancer through the journeys of five families and their professional caregivers over the course of 6 years. Justin’s Story provides a forum for open-ended discussion and consideration of compassionate approaches for navigating pediatric end-of-life. It offers content that is unpredictable and not always best practice. Learners reflect on the complex impact of childhood cancer on Justin, his family, and their professional caregivers. Justin’s Story is designed in consultation with top cancer organizations, leading professionals, and medical educators to improve quality of teaching and learning, to enhance patient care, and fulfill competencies required by the Accreditation Council for Graduate Medical Education, among others. The module is flexible and can be used for self-directed learning or with professionals in classroom or other settings, such as grand rounds. It embraces a humanistic perspective, with awareness of class, race, and cultural difference. Justin’s Story is a case study made up of lively intimate movie clips, competencies, and objectives, discussion questions, take-home points, recommended reading/resource lists, and a PowerPoint presentation. From November 2008 through October 2009, 2,168 participants were exposed to the modules, mostly through conference trainings and classrooms. Additionally, 1,100 pediatric nurses were trained in courses using the A Lion in the House modules through the End-of-Life Nursing Education Consortium Pediatric Palliative Care train-the-trainer sessions. Six-hundred and twenty-nine participants were trained in 13 different forums from 37 states, with 391 completing evaluation surveys. Of these, respondents to the Pediatric End-of-Life Module surveys (n = 205) reported the following improvements: 65.4% were more likely to draw upon the strengths of the full health care team to communicate sensitively with the patient’s family at child end-of-life; 67.3% would better integrate a family’s religious and/or spiritual health care beliefs into discussions of treatment options; 95.6% were more sensitive to the balance between involving the family in decision-making and placing inappropriate burdens for these decisions on parents; and 92.7% would be more aware of their own personal reactions regarding death and dying.
- Develop strategies for the honest disclosure of prognosis, treatment options, and goals of care, without taking away hope.
- Recommend ways to incorporate palliative care interventions concurrent with disease-directed treatments early in the treatment process.
- Articulate an approach for involving the patient and family in decision-making without placing inappropriate burdens in these decisions on them.
Community Media Productions, Inc., a nonprofit organization, received funding from the Centers for Disease Control and Prevention, the Independent Television Service, the Corporation for Public Broadcasting, a Lance Armstrong Foundation Community Program Grant, and the E. Lee Walker Imagination Award to create, promote, and distribute the LION IN THE HOUSE Modules for Health Care Education. Community Media Productions contracted with Aquarius Health Care Media to be the official distributor of the modules through www.aquariusproductions.com/lion.
None to report.
Arceci R. Learning End-of-Life Care: The Media Can Help With The Message. Presented at: American Society of Clinical Oncology Annual Meeting; June 2007; Chicago, Illinois.
Bognar S, Reichert J. The Story of Tim Woods. Presented at: The 9th Biennial Symposium on Minorities, The Medically Underserved & Cancer; March 2004; Washington, DC.
Durgans K. Pediatric End-of-Life Case Studies. Presented at: End-of-Life Nursing Education Consortium-Pediatric Palliative Care Train-the-Trainer Program; February 2009; Sacramento, California.
Parmelee D, Reichert J. A Lion in the House: Strategizing the Use of Intimate Real-Life Case Studies in Pediatric End-of-Life in Medical Education. Presented at: Association of American Medical Colleges Annual Meeting; November 2008; San Antonio, Texas.
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