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IN PEDIATRIC PATIENTS
AZIZA SHAD, MD
AMEY DISTINGUISHED PROFESSOR OF NEURO-
ONCOLOGY AND CHILDHOOD CANCER
DIVISION OF PEDIATRIC HEMATOLOGY
ONCOLOGY, BLOOD AND MARROW
TRANSPLANTATION
LOMBARDI COMPREHENSIVE CANCER CENTER
GEORGETOWN UNIVERSITY HOSPITAL
INTRODUCTION
D
I CURATIVE PALLIATIVE
A D
D
G D
E
N A
PROLONGATION RELIEF OF
O T
OF SUFFERING
S H
I LIFE
S
NEW MODEL OF INTEGRATED CARE
AMERICAN ACADEMY OF PEDIATRICS
Universal Principles of Pediatric Palliative Care
Spiritual
support
Emotional support Comfort
Symptom
control
Interpersonal
Relationships
and Social support
Communication
WHO DELIVERS PALLIATIVE CARE?
• Bereavement
WHERE IS PALLIATIVE CARE DELIVERED?
HOSPICE
HOSPITAL
PATIENT
HOME CARE
OPD
HOSPICE AND PALLIATIVE CARE
Are they the same?
Hospice Palliative care
• Philosophy of care for a • Comfort-oriented care with
terminally ill child; focused broader applications
exclusively on comfort for • Not reserved exclusively for
whatever time remains the terminally ill child
• Can be delivered at home, in • Appropriate for those in
hospital, a dedicated hospice transition from curative to
unit hospice care, or still
• Level of care defined and receiving curative or life-
reimbursed by health care prolonging therapy
insurance
Most children are not enrolled in hospice programs because such programs
require for-going life prolonging therapy, emergency department visits and
hospitalizations
BARRIERS TO PEDIATRIC PALLIATIVE CARE
PERCEPTION OF PEDIATRIC HEALTH CARE PROVIDERS
PAKISTAN
PAKISTAN
0.0551
0.0551
Nepal
Saudi
0.0010
Arabia
0.5323
“In areas such as the pharmacodynamics
of opiates, where good data already
exists, it remains unacceptable to have
children suffer because of misperceptions
and incorrect assumptions about
appropriate drug use”
No
Government
Poor access
support
to morphine Overburdened
oncologist
Lack of Unrecognized
Training in specialty
Medical school
Few hospices and
Trained nurses
PALLIATIVE CARE IS RELIEF OF SOCIAL,
EMOTIONAL AND SPIRITUAL SUFFERING
• Social isolation – separation from peers, friends
– Child-life specialists, teachers
• Emotional issues – anxiety about disease, death
and depression
– Play therapy, art therapy, music therapy
– Psychologist, psychiatrist
– Anti anxiety medication, anti depressants
• Spiritual issues
– Seriously ill children should undergo a spiritual
assessment
PSYCHOSOCIAL ASPECTS OF
PEDIATRIC PALLIATIVE CARE
• Communication with child and family
• Siblings
• Talking about death
• Preparing the family for dying
• Bereavement for family
• De-briefing for staff
COMMUNICATING WITH CHILDREN
• Challenges:
– Children’s concept of death changes over time
– Highly variable from child to child
– This information should be used to adjust our approach to the
child and guide the family
TALKING TO CHILDREN WHO ARE DYING
• Opioids
• Centers of Excellence
• Regional hospitals
• Primary Health care centers
• Community services – home health care
services
EDUCATION AND TRAINING
• Identify leaders in education
– Deans of medical, nursing, pharmacy and social work
schools