Although it was painful to get up so early on the final day of the AAHPM Assembly in Vancouver, it was completely worthwhile to attend the meeting of the Pediatrics Special Interest Group (SIG). Over the years that I’ve attended this meeting, it’s been amazing to watch the evolution of interest and attendance in our SIG, and the parallel explosion of pediatric education, research and advocacy opportunities.
In 2007, our statewide pediatric palliative care (PPC) network OPPEN (Ohio Pediatric Palliative and End-of-life care Network) organized a national conference as a follow-up to the National Hospice and Palliative Care Organization’s (NHPCO) pediatric conference in Dearborn, Michigan in 2004. These efforts were organized precisely because there was no place for PPC providers to go to find educational and research information and to network with colleagues; most national conferences had only occasional, if any, pediatric content. Fortunately, that has certainly changed!
For the past few years, the AAHPM has offered greatly increased pediatric content at the Assembly, with pediatric sessions in almost every concurrent slot, as well as large numbers of pediatric paper presentations (which are often award winners). Pediatric representation exists throughout the organization, from workgroups and committees through the Board of Directors.
Similarly, NHPCO has been offering a pediatric track at its Clinical Team Conference for several years now, and its advisory group ChiPPS (Children’s Project on Palliative and Hospice Services) has expanded, undergone strategic planning, and taken on a leadership role in equipping hospice and palliative care organizations to care for children and in working closely with NHPCO in its advocacy and policy activities (www.nhpco.org/pediatrics).
The American Academy of Pediatrics (AAP) has also jumped on the PPC bandwagon, with the establishment of the Section on Hospice and Palliative Medicine. This group is focusing primarily on policy and educational activities, including opportunities for scholarly activity through the AAP’s main meeting, the National Conference Exhibition. The Section maintains 2 listservs that boast healthy discussion about many aspects of our field, 1 for members and 1 for any interested parties; Affiliate Membership is possible for non-physicians as well (www.aap.org; check out the web page soon for a more expanded discussion of each of these national opportunities for PPC involvement and commitment).
The Center to Advance Palliative Care has recently increased its pediatric focus too. Last fall, the annual conference included a pediatric track for the first time, and that will continue this year. Palliative Care Leadership Center tools and training for programs interested in starting or growing a PPC or hospice program have been available through a number of different sites for years; in 2008, 2 pediatric-specific sites were added (Akron Children’s Hospital and Children’s Hospitals and Clinics of Minneapolis) and a new pediatric curriculum was developed (www.capc.org).
And there are other groups involved with PPC as well. A few more highlights include:
- PEPPERCORN, the Pediatric Palliative Care Research Network, a dedicated group of researchers from a number of sites across North America who are working individually and collaboratively to advance the science of PPC
- The Hospice and Palliative Nurses Association (www.hpna.org), which has successfully developed a pediatric nursing certification examination in hospice and palliative care, and is also developing accompanying educational material
- The National Networks for Pediatric Palliative Care (www.network4pedspallcare.org), a grassroots effort focused on developing a web-based clearinghouse of programs and information for families and providers.
- The Pediatric Hospice and Palliative Medicine Competencies Project, a group of PPC leaders who have been working with the original HPM competencies document and authors to create a companion resource for pediatrics; importantly, the AAHPM’s Board of Directors approved support for this project at this year’s board meeting.
During this time, the Academy’s SIG has continued to meet and grow. In the last few years, we’ve become more organized, along with all SIGs in the Academy which are receiving more support through the new and expanded Communities model. We’ve developed an elections process, allowing a rotation of leadership and the opportunity for younger or newer folks in the field to become involved. This year’s Assembly featured a Pediatric SIG-sponsored session which was very well received. And there were a tremendous number of great suggestions for next year’s Assembly that were generated at the SIG meeting. Our next big push will be for a pediatric plenary!
In short, it’s a great time to be in pediatric hospice and palliative care. Seeing colleagues, learning about many new avenues to become involved in the field, talking about challenging and uplifting situations, sharing wisdom and lessons learned, and literally catching the contagious excitement among us were just a few of the reasons to get out of bed on Saturday morning for the SIG meeting. Hope to see you there next year in Denver!
Today at the AAHPM Assembly, I had the opportunity to attend a much-needed session on pharmacology for symptom management in pediatric patients. Sponsored by the Pediatric Special Interest Group, this “whirlwind tour” covered pharmacologic approaches to depression, anxiety, delirium and insomnia in children. The three presenters from San Diego Hospice – a palliative care physician, a child psychiatrist and a pharmacist – effectively used video and powerpoint to get a lot of important points across quickly. While a bit more attention could have been paid to time management, this was an important session that could easily have been 2 hours in length, and the presenters definitely conveyed the main points in a clear and easy-to-follow fashion.
In pediatrics, we suffer from a practice gap in that there remains such a dearth in evidence-based research for much of our clinical practice. So we rely on anecdotal evidence, or fly by the seat of our pants. It’s very helpful to have guidance and wisdom from a long-established program who have amassed a significant clinical history with pediatric patients. What was particularly informative was the data table that they put together and freely shared, listing all of their recommended pharmacologic choices for each symptom, along with mechanism of action, dosing guidelines, absorption/metabolism/excretion information, common adverse events, and specific clinical pearls about their use. The table also included an algorithm specifying first and second-line choices for each symptom.
One of the many great things about the pediatric palliative care community is the unselfish sharing that we do – as exemplified by the resources offered at today’s presentation. At a national level, we’re currently working on ways to store and share important and widespread information that would benefit everyone, including clinical pathways/protocols, seminal presentations, program development tools, policies/guidelines, and bibliographies. Stay tuned to the AAHPM SIG webpage for updates as to how this information will be made available!