CCCC’s Evolving Role in Pediatric Palliative Care

What type of organizational structure might best meet the needs of California’s pediatric palliative care (PPC) community, now and in the future?  That is the question CCCC’s Board of Directors has sought to answer as part of CCCC’s own strategic planning efforts.  

While CCCC has long been a champion and supporter of pediatric palliative care (PPC), the program officially came under the CCCC’s umbrella in 2015, when the Children’s Hospice and Palliative Care Coalition (CHPCC) became a division of CCCC.  Since then, CCCC has worked hard to provide the staffing and resources needed to honor the spirit and meet the needs of the PPC community. But with the PPC field in a natural transition phase due to shifts in leadership and reimbursement funding, now seemed an appropriate time to engage the PPC community in exploring its current and future needs, and determining what type of organizational structure might best meet those needs.

To help inform the decision making, CCCC commissioned an 18-question e-mail survey of the PPC community and conducted a set of telephone interviews with key community stakeholders.  The survey and interviews provided the following key takeaways:

  • The most important organizational activities needed to support the PPC community include initiating changes in policies, regulations, and programs that increase seriously ill children’s access to community-based health services; building a collaborative network; and providing education to improve workforce capacity.
  • Respondents were almost evenly split between those who felt the needs of the PPC community would be best served by remaining a division of a larger palliative care organization versus those who felt a separate and independent organization devoted to PPC would best meet the community’s needs.
  • The work of representing the PPC community and advocating on its behalf would likely require at least one to two full-time staff.
  • Finding a leader passionate about pediatric palliative care who could create an inclusive process focused on collaboration with diverse stakeholders was seen as a key factor of success.

Based on the responses from the PPC community, the CCCC Board of Directors believes that CCCC is no longer the best organization to lead PPC collaboration in California, and that PPC would benefit from new organizational leadership and structure.

CCCC will continue to champion and support PPC through activities that are a natural component of its broader work, including POLST for pediatrics and pediatric decision aids.  CCCC will also continue activities that facilitate cross-pollination between pediatric and adult providers, including providing pediatric content as part of CCCC’s Annual Summit and promoting pediatric education opportunities for adult-focused providers.  CCCC will continue to work toward its vision that Californians of all ages are able to live well in the face of serious illness.

While CCCC is committed to participate in and support the transition of the PPC coalition to its new home, we believe that leadership of this transition process must come from within the pediatric community, and we look forward to working with the PPC community to support that process moving forward.

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