Join the Movement to Improve Care for Children with Life-Threatening Illnesses

Dear California Pediatric Palliative Care Leaders and Stakeholders,

Among the many lessons we have learned over the past year, one has become exceedingly clear: The field of pediatric palliative care (PPC) in California is at a critical inflection point. Without a unified voice, our progress in making needed policy changes and efforts to share best practices with one another have stalled. 

We are writing to invite you to join us in re-building a community of clinicians, families, and advocates as we work toward creating a sustainable, effective coalition for the future of pediatric palliative care in California.

As you may recall, from 2001 to 2015, as an independent child-focused organization, the Children's Hospice and Palliative Care Coalition of California (CHPCC) facilitated groundbreaking legislation: California's Nick Snow Act and the Federal Concurrent Hospice Care Provision 2302 of the 2010 Affordable Care Act. We also hosted provider trainings and symposia, conducted research, formed alliances with key stakeholders including payers from both public and private sectors, and engaged state and national representatives in pediatric palliative and hospice care. Most importantly, CHPCC elevated the voices of families.

From 2015 to 2020, CHPCC continued advocating for the pediatric palliative care community as a program of the Compassionate Care Coalition of California (CCCC). Last year we worked with CCCC to return CHPCC back to its founders so that the pediatric community of stakeholders could once again form a coalition singularly focused on the unique needs of seriously ill and dying children in California. 

Starting with a small group of volunteers, we now have the opportunity to unite our efforts toward the vision that every child with a serious illness in California has access to high-quality palliative care when and where they need it.

Through our united efforts, we can:

Communicate a common vision of quality pediatric hospice and palliative care in California

Advocate for public policies to serve the needs of seriously ill children and their families

Realize access to quality hospice and palliative care for all children in all areas of our state

Educate the public and policy makers about the needs of children living with serious illness and their families

As a first step in reestablishing CHPCC, we are creating an online map of the PPC community in California, which will include hospital and community-based palliative care providers, family support organizations and resources. The vision is to create a practical, user-friendly tool with up-to-date program and contact information that we all can all use: families and healthcare providers alike. We are fortunate that parent advocate and project manager, Tricia Wiltshire Potts, has signed on to spearhead the project, the design and development of which will help inform the next phases of our work together. 

This mapping project will be informed by a newly developed Physician Advisory Committee (PAC), which will guide us as we gather information about palliative care programs and stakeholder needs. Joining the PAC are:

·  Dr. Kim Bower,  Rady Children’s Hospital San Diego 

·  Dr. Harvey Cohen, Lucile Packard Children's Hospital Stanford

·  Dr. Joan Fisher, George Mark Children's House and Lucile Packard Children's Hospital Stanford 

·  Dr. Stefan Friedrichsdorf, UCSF Benioff Children’s Hospitals, San Francisco and Oakland

·  Dr. Debra Lotstein, Children's Hospital Los Angeles

·  Dr. David Sine, Valley Children's Hospital

Please Click Here to express your interest in helping create a diverse community dedicated to increasing access to high quality care for seriously ill children and their families. Together, we can create a state-wide, unified voice to speak out on behalf of those too little or too sick to speak for themselves. Let's get started!

Sincerely,

The CHPCC Steering Committee 

Kim Bower, MD

Lori Butterworth, MEd, MA

Debra Lotstein, MD, MPH

Monica Newitt, RN, BSN, CHPN

Sherri Sager, VP LPCH

Jim Santucci, CPA, Parent 

Tricia Wiltshire Potts, MAEd, Parent, Project Manager

Christy Torkildson, PhD, RN, PHN, FPCN