Nominated by Gay Walker, Director of Trinity Kids Care Hospice
The Children’s Hospice and Palliative Care Coalition (CHPCC), is a dynamic social movement that works to overcome obstacles to care for children with life-threatening conditions and their families through collaboration with children’s hospitals, hospices, home health, social service, individuals, and grassroots agencies. CHPCC advocates for policies and programs that address the harsh realities faced by seriously ill children–particularly their need for coordinated, comprehensive support that integrates medical, psychological, social, emotional, and spiritual services from the point of diagnosis throughout the course of treatment.
Since Lori Butterworth and Devon Dabbs founded CHPCC in 2001, I have been awed by the tremendous progress they have made in revolutionizing end-of-life care for children. Their three core programs are summarized as follows: (1) Compassionate Reimbursement Initiative for Children (CRI); a California State policy change initiative that effectively investigated and brought awareness to the shortcomings of existing hospice benefits as they applied to children and successfully advocated for systematic change. Through CRI, CHPCC is now working with California’s Department of Health Care Services (DHCS) in the implementation of a new Pediatric Palliative Care Benefit package which can dramatically improve access to end-of-life care for thousands of California’s children; (2) Partnership for Children; based upon recommendations from the Institute of Medicine report “When Children Die: Improving Palliative and End-of-Life Care for Childen and their Families” (2002), CHPCC designed the Partnership for Children, a model program offering critical care coordination in a family-oriented setting for children 0-21 with life-threatening conditions and their families on California’s Central Coast; and The Partnership for Parents (www.partnershipforparents.org), the first and only bilingual web resource addressing the unique needs of parents with seriously ill children.
It is for these programs that I wish to nominate CHPCC for the CAN Achievement in Innovation Award.
Innovative programs and how they advanced our mission
Palliative and hospice care, according to the Children’s International project on Palliative/Hospice Services, is the science and art of lessening physical, psychosocial, and emotional and existential suffering. Palliative and hospice care is assistive to children and families whether the overall goals of care are to cure, prolong life, maximize the quality of life that remains or ease the pain of bereavement.
According to Dr. Marian Dalsey, Chief, Children’s Medical Services, it is estimated that nearly 17,000 California children aged birth to 19 are living with life-threatening illnesses and could benefit from these services. While Medi-Cal includes hospice benefits, they are rarely used. In 2005, only 422 children accessed hospice benefits because of harsh life expectancy restrictions, the requirement to cease curative treatments, and other systemic issues.
Successfully addressing these complex problems in California, CHPCC rallied lawmakers, families, and community based organizations and effectuated the passage of The Nick Snow Children’s Hospice & Palliative Care Act of 2005—a landmark step toward allowing seriously ill children to access hospice and palliative care without giving up curative treatment. CHPCC is currently consulting with DHCS on developing and implementing these policy changes in the form of a Pediatric Palliative Care Benefit package due for release in early 2008.
Drawing from the Institute of Medicine report that comprehensive pediatric palliative care is impossible without a designated care coordinator, the Partnership for Children, based in Watsonville, offers critically ill children and their families’ support through two bilingual Nurse Care Coordinators. The Nurses forge intimate relationships with families and provide a case-specific community-based Plan of Care which identifies local services and specialty resources that best serve the family from diagnosis—throughout the course of treatment—and if the child dies into bereavement. By integrating care with children’s hospitals such as Lucile Packard Children’s Hospital and UCSF, local hospitals and agencies, families receive medical, home care, or palliative care support; pain and symptom management for their child; transportation assistance to and from treatment; emotional and spiritual support for the child and family; written and verbal translation assistance; resolution of practical needs, such as respite; assistance with educational issues including integration into the classroom and tutoring; emergency financial assistance; bereavement support before and after death; as well as funeral assistance. Helping each family navigate their way through the medical system, the insurance paperwork, and the emotional trauma of a child’s life-threatening illness, Partnership for Children establishes continuity and promotes relative ease and comfort during a time wrought with uncertainty.
As a central hub for community-based agencies such as Central Coast Visiting Nurses Association, Hospice Caring Project, Make-A-Wish Foundation, Jacob’s Heart Children’s Cancer Association, Catholic Charities, Heartland Hospice, Pediatric Services of America, Santa Cruz Visiting Nurses Association, Santa Cruz AIDS Project, Watsonville Hospital, Natividad, and specialty hospitals (UCSF Medical Center and Packard Children’s Hospital at Stanford), the Partnership for Children also effectively streamlines communication and expands the capacity of community-based agencies as they work to alleviate the extraordinary burdens faced by children with life-threatening conditions and their families on the Central Coast.
The Partnership for Children is essential to CHPCC’s ongoing advocacy efforts. Now institutionalized by DHCS as an endorsed replicable model for the State, the Partnership acts as a data collection site for the State and tracks the financial, medical, and social outcomes of a local, rural care coordination model as it impacts the children, families, local providers, and specialty pediatric care centers.
The lack of a centralized resource designed specifically to help parents handle the trauma of a child’s life-threatening illness prompted CHPCC to create the Partnership for Parents web resource (www.partnershipforparents.org). The site addresses the needs of parents wherever they are in the trajectory of their child’s illness or through their bereavement process. Topics include: how to talk your child’s doctor, making sense of medical information and terms, preparing for crisis, and coping with grief, among others. Currently offered in English and Spanish, CHPCC is working to expand the language capacity of the site.
By providing these previously non-existent services, CHPCC is overcoming barriers to comprehensive and coordinated hospice and palliative care for children and families.
Through CHPCC’s efforts, pediatric hospice and palliative care is being institutionalized in our local and statewide community. Measurable outcomes to this end include:
I. Implementation of the Nick Snow Children’s Hospice & Palliative Care Act (2006), the first step in increasing access to hospice and palliative services for an estimated 17,000 of California’s children.
II. Launch of the Partnership for Children in September of 2005, a community-based palliative care coordination program recently institutionalized as a DHCS endorsed model in California. Provided 5,000 hours of direct care coordination to 150 families. Provided over 350 hours of capacity building and education to local agencies addressing the unique needs of seriously ill children and their families.
III. Launch of the Partnership for Parents web resource in April 2005: 40,430 registered visits, and a corresponding 24,432 visits registered for the Spanish language site (padresconpadres.com).
Delivery of Service
The services offered by CHPCC through its three core programs are non-duplicative and unique in both their approach and delivery. Each was designed with the inclusion of parents, providers, and policy makers in an effort to address an unmet need either on a national, statewide, or local level. Through research, advocacy and strategic alliances, CHPCC has created a comprehensive pediatric hospice and palliative care benefit package supported by DHCS. The Partnership for Children is effectively bridging chasms that have existed between seriously ill children and their families, and community-based and specialty care providers, ensuring a seamless continuum of care where none previously existed.
The Partnership for Parents, the only resource of its kind, offers information that is difficult if not impossible to find elsewhere. Through providing these services, CHPCC has successfully identified the areas where previous services fell short and has adequately met these unique and crucial demands on behalf of seriously ill children and their families. CHPCC’s systematic approach to dealing with the root causes of the program through CRI; addressing gaps in community-based service through the Partnership for Children; and, offering immediate and comprehensive support through the Partnership for Parents is creating a safety net for children with life-threatening conditions in California and establishing a replicable model that is already drawing the interest of a national audience.
She was kind and compassionate, full of information and resources, and by the time she left, I felt like she was a friend. Five months later, our beautiful baby was diagnosed with a cancerous tumor in her pelvis. Our lives were never the same. My partner and I spent much of our time at the hospital dealing with Madison’s treatment regime. Once she was home, we provided her nursing care ourselves; the nursing care; blood draws, shots, hyper alimentation, dressing changes, and IV antibiotics. We managed insurance eligibility issues and made certain there was authorization for each costly procedure.