Pediatric palliative care (ppc) alphabet soup

Below is a primer on some of the major US organizations and palliative care-related projects that currently have pediatrics high on their radar screens.

AAP: The AAP Section on Hospice and Palliative Medicine focuses primarily on policy and educational activities, including opportunities for scholarly activity through the AAP’s largest continuing medical educational event, the National Conference and Exhibition. The Section maintains 2 LISTSERV® e-mail lists 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. Our Education, Policy/Advocacy, and Membership workgroups provide many opportunities for participation, both large and small, for all members who are interested. Please email ppc@aap.org for more details or to volunteer.

The AAP’s primary focus is on practicing pediatricians and pediatric subspecialists and the educational goals of teaching knowledge and skills that every provider should have; thus, PPC educational efforts geared toward primary care and subspecialty pediatricians and trainees, including policies and procedures, would best be directed toward this audience.

AAHPM: The American Academy of Hospice and Palliative Medicine (AAHPM), whose tagline is “Physicians caring for patients with serious illness,” has as its core purpose: to improve the care of patients with serious or life-threatening conditions through advancement of hospice and palliative medicine (www.aahpm.org).  For the past few years, the AAHPM has greatly increased its pediatric content at the Assembly, with pediatric sessions in almost every concurrent slot, as well as large numbers of pediatric paper presentations. Pediatric representation and opportunities for participation and leadership exist throughout the organization, from workgroups and committees to the Board of Directors. Within the AAHPM, the focus of the Peds-SIG is “those issues particular to the delivery of palliative and hospice care for the pediatric patient population. The SIG will serve as a forum for examining and a vehicle for influencing those issues and care.” The Peds-SIG meets every year at the Assembly and has its own webpage on the Academy’s website.

For the pediatric community, the AAHPM’s focus on education and research is probably its core strength. In particular, PPC subspecialty training resources –  including curricula geared toward medical students, residents and fellows – are concentrated here. The call for proposals for the next Assembly in Denver in 2012 will be open soon, offering more great opportunities for us to become involved.

NHPCO: The National Hospice and Palliative Care Organization’s (NHPCO) mission is “to lead and mobilize social change for improved care at the end of life,” and its vision is to create a “world where individuals and families facing serious illness, death, and grief will experience the best that humankind can offer” (www.nhpco.org).  ChiPPS, the Children’s Project on Palliative and Hospice Services, is a leadership group that serves as an advisory body to NHPCO; the goal of ChiPPS is to build capacity by identifying, developing and disseminating practical strategies that advance care for children and families coping with life-threatening conditions, dying and bereavement. In addition to ChiPPS, pediatric representation exists on several of NHPCO’s organization-wide committees and through the position of Consulting Pediatric Medical Director. NHPCO’s annual Clinical Team Conference has had a pediatric track for several years, meaning that pediatric content is be available during all concurrent sessions (next up: October 6-8, 2011, San Diego).

For our purposes in pediatrics, NHPCO’s strengths are really around: facilitating interdisciplinary care and education; educating adult-focused hospice and palliative medicine providers to care for children; establishing standards and quality metrics; and regulatory policy and legislative advocacy initiatives (including the Affordable Health Care Act and the Concurrent Care for Children provision). Check out www.nhpco.org/pediatrics for more information about ChiPPS and the other NHPCO pediatric initiatives and resources, including the first module of a 10-module on-line education curriculum in PPC.

CAPC: 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 health care settings. CAPC is a national organization dedicated to increasing the availability of quality palliative care services by offering comprehensive training for palliative care programs at every stage - from strategic planning and funding to operations and sustainability. CAPC provides seminars, audio conferences, tools, reference materials, a robust website, and the Palliative Care Leadership Centers™ (PCLC) - a major training and mentoring initiative. It also sponsors www.getpalliativecare.org, a website for patients and families.

CAPC has recently increased its pediatric focus as well. Last fall, the annual conference included a pediatric track for the first time, and that will continue this year. PCLC 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 pediatric-specific curriculum was developed (www.capc.org).

For the pediatric community, CAPC probably best offers program development support focused on the dedicated palliative care provider, including information and tools on financing, staffing, job descriptions, organizational policies, etc. In addition, a monitored discussion board hosted by CAPC is a good place to ask questions of other programs along these lines.

HPNA: Celebrating its 25th anniversary this year, the Hospice and Palliative Nurses’ Association (HPNA) describes itself as “the collaborative and visionary professional hospice and palliative specialty nursing organization with evidence-based educational tools to assist members of the nursing team.” HPNA’s mission statement is: “Leading the way to promote excellence in the provision of palliative nursing care through leadership development, education, and the support of research in the field” (www.hpna.org). For the first time this year, HPNA will administer a pediatric nursing certification examination in hospice and palliative care for which they are also developing accompanying educational material.

We should look to HPNA for support for our nursing members and colleagues; pediatric representation exists on the Board of HPNA as well as throughout its membership of more than 10,000!

National Networks: The National Networks for Pediatric Palliative Care is a recently-formed collaborative of regional centers who share resources for the development and support of PPC programs throughout the US so that children with life-threatening conditions and their families can get the support and services they need in their home communities. The vision of the group is to be a web-based resource for communication and collaboration that offers program consultation and resources to existing and developing programs. This online community will include a directory of programs, tools, educational opportunities, consultation, bibliographies, special topics essays, and other resources that can reinforce standards of care, expedite dissemination of information to the field, and support emerging programs through the sharing of expertise. You can access these resources at www.network4pedspallcare.org

NPHPCC: The National Pediatric Hospice and Palliative Care Collaboration (NPHPCC) is a working collaborative of national organizations committed to promoting excellence in pediatric palliative and hospice care, which will advance common goals while avoiding duplication of effort. The NPHPCC seeks to harness the knowledge, strengths and perspectives of the participating organizations and the larger field. The NPHPCC strives to: enhance communication about new and existing pediatric initiatives, goals and priorities within major organizations involved in furthering pediatric hospice and palliative care; foster and promote activities that meld strengths and priorities of each participating organization; raise the awareness and profile of pediatric hospice and palliative care within the member organizations and among other stakeholders; and provide a central mechanism to disseminate information while avoiding duplication of effort. This group is modeled after “The Coalition,” a similar umbrella group of organizations operating in the adult realm.

Other organizations, particularly those representing other disciplines (including spiritual care, social work and child life) will be brought into the Collaboration in the future as their pediatric resources and agendas become more solidified.

Other groups you may hear/know about:

PEPPERCORN: The Pediatric Palliative Care Research Network is 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

COMPETENCIES PROJECT: The Pediatric Hospice and Palliative Medicine Competencies Project is 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. In the next year, the group will be expanding and disseminating the document with input from the field, and will explore ways to tweak the content for use in other educational venues.