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Yale Law School white papers, pediatric palliative council and parent advisory work progress
Summary
Yale Law School and the pediatric palliative work group reported a multi-paper effort and state-level pediatric initiatives; coalition members described a parent advisory council, workshop plans and offers of technical support from Yale and other partners.
Representatives from Yale Law School and coalition members updated the advisory council on a white paper series and pediatric palliative work.
"We have since come from 100 page, mothership white paper to making that into 3 smaller and actually readable, white papers," a representative said, adding the first will focus on creating a statewide pediatric palliative-care program and expanding primary palliative-care education. The later papers will address reimbursement and workforce strengthening.
Council members described coordination between the pediatric hospice/palliative work group, a state coalition that now includes 15 stakeholders and an emerging parent advisory council. The coalition expects to offer a pediatric palliative-care workshop in June focused on communication skills and asked whether the Department of Public Health could be listed as a supporting agency on event materials.
DPH staff said they would check with leadership and the agency’s new marketing and communications unit about logo use and also offered to post vetted resources on the state website if materials are emailed for review. Coalition members described plans for an interactive resource map showing statewide pediatric palliative resources.
Why it matters: Council members said statewide pediatric programs, parent advisors and educational workshops could improve access and family-centered care for children with serious illness. Members mentioned outreach to established pediatric hospice programs for consultation, and a consultant from a Washington, D.C., pediatric hospice was named as a planned contributor.
Ending: Coalition members and Yale Law School staff said they would share draft white papers and the published pediatric council report with the advisory council and continue to refine program recommendations.
