History has shown that the current medical system often overlooks the care and emotional support of children with chronic, complex medical conditions and their families.
Through the Children’s Hospice & Palliative Care Coalition, we’re leading the way in offering solutions that make a difference for seriously ill and dying children.
Learn more about our pediatric initiatives:
- Partners For Children pediatric palliative care benefit
- Pediatric Policy & Advocacy
- Published Research
- BEST in Pediatrics
- Education & Training
- Regional Collaboratives
What is pediatric palliative care?
Palliative care is commonly defined as specialized medical care for people with serious illnesses. It focuses on providing patients with relief from the symptoms and stress of a serious illness. The goal is to improve quality of life for both the patient and the family. (Learn more at GetPalliativeCare.org)
Pediatric palliative care as defined by:
Pediatric palliative care includes:
- Care for a child’s body, mind, and spirit
- Starts at the point of diagnosis and continues regardless of whether curative therapies are pursued
- The expertise of a multidisciplinary team along with family and community resources
WHO Definition of Palliative Care. World Health Organization.
Pediatric palliative care:
- Seeks to prevent and relieve the physical and emotional distress produced by a life threatening medical condition or its treatment
- Helps patients and their families live as normally as possible
- Provides timely and accurate information and support in decision-making
Institute of Medicine. When Children Die: Improving Palliative and End-of-Life Care for Children and Their Families.
“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, psycho-social, 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
What we do
Our most current success, the Partners For Children Pediatric Palliative Care Benefit program, implemented in select counties throughout California, enables children to receive palliative (comfort) care in their home in addition to the treatment they receive at the hospital. Thanks to this program, families on public insurance are no longer forced to make a heart-wrenching decision between easing their children’s suffering or receiving treatment that could cure their children’s illness or prolong their lives.
CHPCC works with community partners to manage programs that meet the important day-to-day needs of the kids and their families. We create opportunities for doctors, nurses, families, and community leaders to talk together about the issues that matter the most, and help professionals to get training and education they need to care for children who are chronically ill or at the end of life.
CHPCC also educates the public and rallies support for legislative action. While we predominantly focus our efforts on California, we mentor other states across the nation seeking similar change and participate in the nationwide discussion of care for children.
Connect with us
If you are interested in getting more involved with our advocacy efforts in pediatric palliative care, contact Devon Dabbs, vice president of pediatric programming and education.