2. PALLIATIVE CARE: WHAT IS IT?
Any form of medical care or treatment that
focuses on reducing the severity of a disease or
illness.
Goals
prevent and relieve suffering
improve quality of life for patients facing serious illness.
Not dependent on prognosis
Can be offered in conjunction with cure directed
therapy
3. PEDIATRIC PALLIATIVE MEDICINE
AAP recommends palliative medicine to be offered to
all children with a “life-threatening condition”.
AAP supports an “integrated model of palliative care”
in which palliative care is offered to a patient and
their family at the time of diagnosis and the care is
carried out throughout the illness whether it ends in
cure or death.
Palliative medicine should not only be offered to
those children who are imminently dying or have a
terminal condition as many needy children may be
missed.
4. AAP POLICY ON PEDIATRIC PALLIATIVE
CARE
AAP in 2000 (with reaffirmation in 2007) called
for the development of clinical policies and
minimum standards that promote the welfare
of infants and children living with life-
threatening or terminal conditions.
The goal is to provide patients and their
families support with curative, life-prolonging,
and palliative care.
5. AAP POLICY ON PEDIATRIC PALLIATIVE
CARE
Principles for palliative care:
1. Respect for the dignity of patients and families
2. Access to competent and compassionate palliative care
3. Support of the caregivers
4. Improved professional and social support for pediatric
palliative care
5. Continued improvement of pediatric palliative care
through research and education
6. BARRIERS TO PALLIATIVE CARE: PERCEPTIONS OF
PEDIATRIC HEALTH CARE PROVIDERS
Study in 2008 explored barriers to palliative
care as perceived by physicians and
nurses.
Uncertain prognosis was the barrier most
commonly perceived followed by:
family not ready to acknowledge incurable
condition
language barriers
time constraints
family preference for more life-sustaining treatment
than staff
staff shortage
7. TYPICAL PEDIATRIC PALLIATIVE CARE TEAM
Physicians
Nurses
Advanced practice nurses
Social workers
Psychologists
Pharmacists
Child development specialists
Case managers
Chaplains
Bereavement counselors
Integrative care
Music therapy
8. GOOD COMMUNICATION
Imperative in pediatric palliative medicine.
Communication gaps are common in
children with complex disease.
Palliative physicians can assist with
coordination of care as well as effective
communication between the family and care
team.
9. WHAT PEDIATRIC PALLIATIVE CARE IS NOT
JUST ABOUT
Cancer
Many other conditions can benefit from palliative care
such as cystic fibrosis or genetic disease.
Infants and young children
Palliative care also available for adolescents, young
adults as well as prenatally.
End of life
Palliative care should be introduced after diagnosis of a
potentially life threatening disease and not just when
cure is no longer possible.
10. WHAT PEDIATRIC PALLIATIVE CARE IS ABOUT
Family
Palliative care strives to support the patient’s family during a very
stressful and difficult time.
Living
Allowing the patient to live the best life possible with their family
and friends.
Friends, Community
Palliative care can also support caregivers, friends and those in
the patient’s community when needed.
Hope
Hope is a central part of palliative care. Hope for a cure is always
important to everyone involved with the patient. When cure is not
possible hope may be transitioned to other forms such as hope
for comfort and happiness for the patient and family.
11. REFERENCES
AAP. (2000). Palliative care for children. Pediatrics, 106 (2), 351-357.
Davies, B., Sehring, J. C., Cooper, B. A., Hughes, A., Philp, J. C., Amidi-Nouri,
A., et al (2008). Barriers to palliative care for children: Perceptions of pediatric
health care providers. Pediatrics, 121, 282-288.
Feudtner, C. (2007), Collaborative communication in pediatric palliative care:
A foundation for problem-solving and decision making. Pediatric clinics of
North America. 54, 583-607.
