Pediatric Palliative care (pronounced pal-lee-uh-tiv) is specialized medical care for people living with a serious illness. Palliative care focuses on relieving the illness’s symptoms and stress. The goal is to improve the child’s and family’s quality of life.
A specially-trained team of doctors, nurses, social workers, and others provide palliative care. The team works together with the child’s other doctors as an extra layer of support. Palliative care is appropriate at any age and any stage of an illness. It is appropriate for neonates, perinates, infants, children, adolescents, and young adults, and it can be provided along with treatment meant to cure.
Pediatric palliative care addresses serious medical conditions, including genetic disorders, cancer, prematurity, neurologic disorders, heart and lung conditions, and others. It relieves the symptoms of these diseases, such as pain, shortness of breath, fatigue, constipation, nausea, loss of appetite and difficulty sleeping, anxiety, and depression. In short, it helps the child and the family improve their quality of life.
Pediatric palliative care is family-centered. It helps with communication and coordination of care. With the close communication that palliative care provides, families can better choose options that align with their values, traditions, and culture. This improves the well-being of the entire family.
Palliative care is based on need, not prognosis, so bringing the team in early is best.
Pediatric Services in FL
Florida offers four types of pediatric palliative services. These include Hospice, Concurrent Care, Partners In Care: Together for Kids (PIC:TFK), and Home Health.
Hospice services are available for patients with a terminal illness certified by a primary care physician (6 months or less prognosis).
Concurrent care is for Medicaid recipients only, also with a terminal illness certified by a primary care physician (6 months or less prognosis).
PIC:TFK is available for patients who are enrolled in the CMS Managed Care Plan through Medicaid Title XIX or KidCare Title XXI, have a life-threatening illness, and live in an area served by a PIC:TFK Provider.
Home health is available for patients who are homebound or have a condition such that leaving the home is contraindicated.
Partners in Care Together for Kids (PIC:TFK) PIC:TFK Florida has a special program for children with a serious illness. Partners in Care: Together for Kids (PIC:TFK) helps your child and family get special care and keep up your quality of life. PIC:TFK’s experts have the tools to provide the care, comfort, and support your family needs. They work with your child’s healthcare provider and CMS Health Plan. PIC:TFK services are provided by specially trained providers. These providers have experience with palliative care and children. While your child is treated by a hospice provider, they are not a hospice patient. Enrollment in PIC:TFK is voluntary. Your child’s CMS Health Plan Care Manager is available to help you. To qualify, your child must be: Enrolled in CMS Health Plan, Diagnosed with a serious condition, & Live in an area with a PIC:TFK provider. Visit the Florida Department of Health PIC:TFK website for more information.
Pediatric Concurrent Care NHPCO PCC Page Resources for a better understanding of pediatric concurrent care
The Patient Protection and Affordable Care Act (ACA) 2011 requires all state Medicaid programs to pay for both curative and hospice services for children under age 21 who qualify. Section 2302, termed the “Concurrent Care for Children” Requirement (CCCR), states that a child who is eligible for and receives hospice care must also have all other services provided or have payment made for services that are related to the treatment of the child’s condition. This provision affects children who are eligible for Medicaid or the Children’s Health Insurance Program (CHIP).
Find Providers
Palliative Care providers are growing in Florida but are not widely available. Both Hospitals and Hospices offer palliative care programs in limited capacities. To find more information about a program near you:
The Courageous Parents Network – Courageous Parents Network is a non-profit organization and educational platform that orients, empowers, and accompanies families and providers caring for children with serious illness.
