Introduction to Pediatric Palliative Care

“The art and science of patient and family-centered care aimed at attending to suffering, promoting healing and improving quality of life.” ~Javier Kane, MD


This section is intended as an introduction to the training and can be used in conjunction with any of the modules. It provides a brief overview of pediatric palliative care and how it relates to Sickle Cell Disease (SCD).

This module typically takes around 35 minutes to complete. A more detailed module structure can be found in the SCD Facilitator’s Guide.

Learning Objectives

  • Understand the basics of palliative care
  • Begin to explore the various roles of palliative care in the care of someone with SCD

A Model of Palliative Care in Chronic Life-Threatening Conditions

Components of Palliative Care

  • Quality of Life
  • Pain and Symptom Management
  • Communication
  • Ethical Decision Making
  • Advance Care Planning
  • Grief & Bereavement

Palliative Care from the Edge of the Wedge

Presentation by Dr. Ross Hays

Group Discussion

  • Did you hear anything new related to the definition of palliative care?
  • What are key PC components that can help in “quality of life” for an adolescent with NMD, their parents, family members, and professional caregivers?
  • What is the role of hope in palliative care?