Resources available to help health care professionals provide palliative care to children

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 quaternary centers.

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.

American Academy of Pediatrics

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.

Christine A. Zawistowski

The section on hospice and palliative care is open to all members. The section has quarterly newsletters, a listserv and many opportunities for advice and networking.

American Academy of Hospice and Palliative Medicine

The American Academy of Hospice and Palliative Medicine is the professional organization for physicians specializing in hospice and palliative medicine.

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.

Initiative for Pediatric Palliative Care

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 conditions.

IPPC’s 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.

Pediatric Palliative Care and Hospice

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 United States.

The Children’s 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.

Center to Advance Palliative Care

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 settings.

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.

Association of Children’s Palliative Care

The Association of Children’s 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 symptoms.

Children’s Hospice and Palliative Care Coalition

The Children’s Hospice and Palliative Care Coalition is a social movement led by children’s 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.

Children’s Hospice International

Children’s 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.

National Network for Pediatric Palliative Care

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.

Aging with dignity

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 be customized.

Oncotalk

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 retreat.

End of Life/Palliative Education Resource Center

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 disclosures.

For more information:

• American Academy of Pediatrics. Pediatrics. 2000;106:351-357.