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


Description

This section is intended as an overall 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 Duchenne Muscular Dystrophy (DMD).

This module typically takes around 35 minutes to complete. A more detailed module structure can be found in the DMD Facilitator’s Guide. For a sample module structure, click here.

Learning Objectives

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

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 DMD, their parents, family members, and professional caregivers?
  • What is the role of hope in palliative care?

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