What is Pediatric Palliative Care?
Institute of Medicine: When Children Die (2002):
- Palliative care seeks to prevent and relieve the physical and emotional distress produced by a life threatening medical condition or its treatment
- Help patients and their families live as normally as possible
- Provide timely and accurate information and support in decision-making
World Health Organization (1998):
- Care of child’s body, mind, and spirit
- Starting at the point of diagnosis and continuing regardless of whether curative therapies are pursued
- Expertise of a multidisciplinary team along with family and community resources
“Palliative care is not about what you can or can’t have treatment-wise. And it’s not about length of time on this earth. Essentially any treatment in the medical system can be palliative; surgeries can be palliative, chemotherapy can be palliative, everything can be palliative. So to base it on what you are or aren’t doing for people is a mistake. It’s about providing an extra layer of support-about comfort and about ameliorating suffering.” – Dr. Sarah Friebert
“Palliative care is a multidisciplinary approach to the relief of suffering in all domains (physical, psychosocial, spiritual and existential) in children, their families and their healthcare providers.” – Dr. Glen Komatsu
“Palliative care is neither diagnostic nor curative, but rather has as its goal the patient’s comfort. The use of local anesthetic cream applied to the site of venipuncture in a child and the treatment of pain in a terminal cancer patient are examples of palliative care.” – Dr. Thomas Klitzner
“Doctors typically hope for the best, but don’t plan for the worst. No child should die. But despite our wonderful medical interventions, children do die… Physicians need to have a care plan that includes palliative care and hospice as part of the treatment. They don’t necessarily have to carry out the plan but it needs to be one of the options.” – Dr. Lorry Frankel
The California Pediatric Palliative Care Collaborative Network consists of partners working together to improve palliative care services for children.
Northern California Collaborative for Pediatric Palliative Care (NCCPPC)
The Northern California Collaborative for Pediatric Palliative Care (NCCPPC) is a collaborative professional group aimed at improving services by providing education and increasing awareness and advocacy for children with life threatening conditions and their families. We share information and resources related to providing excellent care for children with life-threatening conditions and have membership from throughout Northern California.
Central California Collaborative for Pediatric Palliative Care (CCCPPC)
The Central California Collaborative for Pediatric Palliative Care is a diverse and dedicated group of individuals who have come together in response to a healthcare crisis facing children living in Central California. Together we offer support in opening access to options for family-centered, compassionate care for children with life threatening conditions and their families.
Southern California Pediatric Palliative Care Network (SCCPPN “skippin”)
The Southern California Pediatric Palliative Care Network (SCPPN) is a collaborative network dedicated to improving the quality of life and quality of care for children with life-threatening conditions by promoting excellence in compassionate, family-centered palliative care. We meet quarterly at various locations around Southern California working together to ensure that children have access to outstanding medical care that meets the needs of the entire family.
California Hospice and Palliative Care Association (CHAPCA)
The California Hospice and Palliative Care Association advocates for those facing life-threatening illnesses. They provide technical resources to their members, advocate on and monitor legislative and regulatory activities, provide continuing education to providers on end-of-life issues and collaborate with other organizations that share an interest in end-of-life care. CHAPCA serves nearly 200 hospice providers and their staff in California and Nevada.
The Center to Advance Palliative Care (CAPC)
CAPC provides healthcare professionals with tools, training, technical assistance and strategies to sustain palliative care programs in hospitals and other healthcare settings.
Coalition for Compassionate Care of California (CCCC)
CCCC is a statewide partnership of regional and statewide organizations, state agencies, and individuals working together to promote high-quality, compassionate end-of-life care for all Californians.
Moment By Moment
Founded in 2006, Moment by Moment is a nonprofit organization with an all-volunteer staff of 250 professional photographers that is connected to every children’s hospital in the state of California and provides portraits to over 50 families each month. Their goal is to from behind the camera lens, capture the hope, courage, determination and love of families experiencing a potential life limiting illness of a child. CHPCC is honored to feature photography by Moment to Moment on our website.
The National Hospice and Palliative Care Organization (NHPCO)
NHPCO facilitates interdisciplinary care and education aimed at attracting adult-focused hospice and palliative medicine providers to care for children, establishing standards and guiding regulatory policy and legislative initiatives.
If you’re an organization working with children with serious illnesses and would be interested in partnering with us on our initiative to advocate for and promote concurrent care, please contact us.
Coming soon… a dedicated site for waiver pilot providers.