Pediatric Palliative Care: It Depends on the Goals of Care

Nov 11, 2022

Palliative care is an approach that through prevention and relief of suffering by means of early identification, impeccable assessment, and treatment of physical, psychosocial, and spiritual pain improves the quality of life of patients and their families facing problems associated with life-threatening illness. Palliative care expertise for children with life-threatening conditions is still lacking compared to that for adults. Spreading knowledge about this topic is more important than ever!

This week’s Pediatric Palliative Care seminar was created under the leadership of Dr. Stefan J. Friedrichsdorf, Professor of Pediatrics and Chief of the Division of Pediatric Pain, Palliative and Integrative Medicine at the UCSF Benioff Children’s Hospitals in San Francisco and Oakland as well as the founder of EPEC-Pediatrics. EPEC-Pediatrics (Education in Palliative and End-of-Life Care Pediatrics) is the most comprehensive Pediatric Palliative Care curriculum and education dissemination project worldwide. Funded by the National Institute of Health (NIH) and the National Cancer Institute (NCI), this extensive curriculum was designed to address the needs of seriously ill children, their families, pediatric hematology/oncology providers, and other pediatric clinicians.

31 fellows from 21 different countries gathered in Schloss Arenberg for the seminar in Salzburg. Course director Dr. Stefan J. Friedrichsdorf carefully selected the faculty for the seminar, choosing a variety of experts from various institutions. Dr. Joanne Wolfe, Faculty Vice President for Faculty Development at the Dana-Farber Cancer Institute, Professor of Pediatrics at Harvard Medical School, and co-developer of the EPEC-Pediatrics project, served as the co-course director. The highly motivated faculty included by Dr. Justin N. Baker, Pediatric Oncologist, Palliative Care Physician, Patient-Reported Outcomes and End-Of-Life Care Clinical Investigator at St. Jude Children’s Research Hospital, Dr. Hans-Ulrich Bender, Pediatrician and Pediatric Palliative Care Specialist at Inselspital, Bern University Hospital, and Dr. Joe El-Khoury, Palliative Care Physician at Centre Hospitalier Public d’Hauteville in France and in Balsam – the Lebanese Center for Palliative Care in Beirut. Dr. Diana McIntosh, Consultant Pediatric Oncologist at the Royal Hospital for Children in Scotland, and Stacy S. Remke, Senior Teaching Specialist at the University of Minnesota’s School of Social Work, served as faculty for the first time.

On top of more than a dozen excellent lectures, various breakout workshops provided fellows the opportunity to gather new information on how to be mindful and care about yourself, how to manage refractory distress in preparation for imminent death, and how to communicate in difficult situations. To help them implement these tips, different role plays were performed, in which every fellow had the chance to act as a doctor, a child, a parent, a social worker, or a nurse.

On Monday evening, fellows participated in a group exercise, creating a pediatric palliative care spirit animal which resulted in lots of laughter and fun amongst faculty and fellows. You can see the exciting outcomes on our Instagram (@openmedicalinstitute). Additionally, seven cases were chosen by the faculty to be published on the OMI case library.

The free afternoon on Wednesday offered a break from the academic program, in which faculty and fellows visited the beautiful city of Hallstatt. On Thursday evening, the social program continued with a classical chamber music concert at Schloss Arenberg. The seminar concluded with a farewell reception and graduation dinner, where fellows were awarded their certificates of attendance and had one last chance to enjoy a wonderful evening together with their colleagues.

I am so grateful for my time here at the Open Medical Institute teaching Pediatric Palliative Care through the EPEC-Pediatrics curriculum. The setting is spectacular and the learning environment unmatched as we all live together for the week in the Schloss Arenberg. I am convinced that many of the participants this week will go home and work to change their hospitals, countries and regions with the continued support of our team and of OMI. THANK YOU for the opportunity to be here and I cannot wait to come back again soon.

Justin N. Baker, MD, FAAP, FAAHPM

OMI faculty member, St. Jude Children’s Research Hospital