Florida Pediatric Palliative and Hospice Care Resources
Florida Pediatric Palliative and
Hospice Care Resources
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.
Resources For Parents and Caregivers
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 Palliative and Hospice Care NHPCO website Find information, Brochures for Families, Pediatric E-Journal, Pediatric Professional Resources
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).
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:
- LetHospiceHelp.org Florida Hospice search by county or city
- Map (Florida Children’s Hospitals and Partners In Care Together for Kids Medicaid Palliative Care programs)
- National Hospice Locator – Pediatric Programs search available
Resources For Providers
- PIC:TFK Identification Tool
- Comparison Chart of Pediatric Services in Florida
- Kid’s Big Win: Concurrent Care for Children – Florida Implementation Webinar slides from 2013
- NHPCO Pediatric Professional Resources
Professional Training and Networks:
- American Academy of Pediatrics – Section SOHPM LISTSERV
- ELNEC Pediatric Curriculum
- Pediatric Chaplains Network
- Social Work Hospice & Palliative Care Network
- Pediatric Palliative Care Webinar Series
- 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.
- National Alliance for Grieving Children
- Get Palliative Care – Pediatric Palliative Care webpage
- Children’s Grief & Bereavement camps may be offered through your local hospices. Find a local hospice near you. LetHospiceHelp.org
- Children’s Bereavement Center
- Five Wishes – See Voicing My Choices and My Wishes – Advanced Care Directives
- Florida Association of Children’s Hospitals
- Florida Hospice & Palliative Care Association
- AAHPM – Pediatric Hospice and Palliative Medicine Competencies Project
- CAPC – Pediatric Palliative Care Delivery
- National Coalition for Hospice and Palliative Care – PPC Task Force
- Coalition for Compassionate Care of California’s PPC Trainings, Resources, & Curricula Guide – Downloadable PDF
- The Conversation Project
- Guide for Caregivers of a Child with Serious Illness
- Pediatric Palliative Care Coalition Toolkits