The American Academy of Pediatrics position statement on pediatric
palliative care puts forth as one of its recommendations that all physicians
who care for children need to become familiar and comfortable with provision of
palliative care to children.
Although this may not be difficult to accomplish in large academic
settings where a pediatric palliative care team is available, it may be
time-consuming and challenging for the practitioner based outside of the
This column will highlight some of the best resources available to help
physicians and their teams incorporate palliative care into the daily care of
their pediatric patients.
The American Academy of Pediatrics is an organization of pediatricians
committed to the attainment of optimal health and well-being for all infants,
children, adolescents and young adults.
To access resources, one must become a member. Membership is open to
pediatricians, pediatric subspecialists and pediatric surgical specialists.
The section on hospice and palliative care is open to all members. The
section has quarterly newsletters, a listserv and many opportunities for advice
The American Academy of Hospice and Palliative Medicine is the
professional organization for physicians specializing in hospice and palliative
Membership is available to physicians, nonphysicians involved in
palliative care, fellows, residents, and medical and nursing students.
Most resources require membership for access, but some including
a link for materials designed for patients and families are free.
Pediatric-specific resources include a special interest group and an
online bookstore. A subscription to the Journal of Pain and Symptom
Management is free to members.
The Initiative for Pediatric Palliative Care (IPPC) is a research,
quality improvement and education effort aimed at enhancing family-centered
care for children living with life-threatening conditions.
The initiative sponsors intensive 2.5-day educational retreats
throughout the United States and Canada that are designed for interdisciplinary
teams of practitioners and parents of children with life-threatening
IPPCs comprehensive interdisciplinary curriculum, available
online, addresses knowledge, attitudes and skills that health care
professionals need to better serve children and families. Free registration is
available for access to facilitator guides. Curriculum-accompanying videos may
be ordered on the website.
This is a pediatric-specific program under the National Hospice and
Palliative Care Organization, the largest nonprofit membership organization
representing hospice and palliative care programs and professionals in the
The Childrens Project on Palliative/Hospice Services is working to
enhance the science and practice of pediatric hospice and palliative care and
to increase the availability of state-of-the-art services to families.
Registration is free and allows access to the e-newsletter, online training
courses, outreach, policy, quality and online networking.
The Center to Advance Palliative Care (CAPC) provides health care
professionals with the tools, training and technical assistance necessary to
start and sustain successful palliative care programs in hospitals and other
For those starting pediatric palliative care programs, Palliative Care
Leadership Centers for pediatrics provides team-oriented intensive operational
training and yearlong mentoring for palliative care programs at every stage.
CAPConnect forums are a free resource for health care professionals to
share information, exchange ideas and get advice. One must register with the
site for access. There is a pediatric palliative care-specific forum.
The Association of Childrens Palliative Care is the United
Kingdom-wide charity working to achieve the best possible quality of life and
care for every child and young person who is not expected to reach adulthood.
Although much of the information on this site is specific for the United
Kingdom, many free downloads and materials can be ordered online (click
Downloads and shop on the right side of the page).
One excellent resource is the Basic symptom management
document, a free download that covers basic management of a multitude of
The Childrens Hospice and Palliative Care Coalition is a social
movement led by childrens hospitals, hospices, home health and grassroots
agencies, and individuals to improve care for children with life-threatening
conditions and their families. Some resources are specific for California, but
there is a nice section of resources for families.
Childrens Hospice International provides education, training and
technical assistance to those who care for children with life-threatening
conditions and their families. The Resources tab can be used to
locate programs and download publications.
The National Network for Pediatric Palliative Care is a Web-based
resource for communication and collaboration that offers program consultation
and resources to existing and developing programs. Although many parts of this
site are waiting to have materials added, the FAQ section has a
concise, well-written primer on palliative care.
Fives Wishes, designed for young adults and older, and My Wishes, geared
toward pediatric patients, are documents that take individuals through the
process of creating a living will. These forms are designed to be worked on at
home in a nonthreatening environment. They can be ordered online, and they can
Oncotalk is an online module designed to help physicians learn how they
can teach residents, students and fellows to approach difficult conversations.
There is an online teaching module, as well as videos. There also is an annual
intensive retreat for medical oncology fellows. Applications are required for
The End of Life/Palliative Education Resource Center is a free resource
for end-of-life and palliative care health care providers.
The center offers 247 Fast Facts, which are one-page reviews
of issues encountered in end-of-life care. Most are adult-oriented, but they
can be useful in the care of pediatric patients, as well. Additional resources
on the site include educational materials, links to clinical and educational
Web resource centers and a monthly listserv e-newsletter.
Christine A. Zawistowski, MD, is a pediatric palliative care
and intensive care doctor at NYU Langone Medical Center in New York.
Disclosure: Dr. Zawistowski reports no relevant financial
For more information:
- American Academy of Pediatrics. Pediatrics.