“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 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?