From infants and toddlers to school-aged children, teenagers and college-aged students, life-limiting or life-threatening illnesses can strike the young from newborn to 21 years of age at any time. According to the National Hospice and Palliative Care Organization’s Facts and Figures report, even some adults over the age of 21 are still considered pediatric patients, as they have conditions monitored by pediatric specialists or developmental challenges that are better managed by pediatricians. When these types of illnesses occur in children, care is very different from adults who face similar challenges. Founded on this knowledge, Chapters Health System created pediatric programs offering very unique services to better meet their needs.
Our Pediatric Programs
At Chapters Health, our pediatric programs serve three distinct populations of children: those with chronic or complex conditions who require palliative care, those with serious conditions who are not yet eligible for hospice and those needing end-of-life care.
“Children experience very different things than adults do,” said Robert Bash Jr., MD, hospice and palliative care pediatrician with Chapters Health. “There’s also a different approach to care as the patient is more than just the child. We really treat the patient and family together as one unit—our approach is focused on the family.”
Patients in the pediatric program can have:
- Rare congenital diseases
- Birth traumas
- Chromosome or genetic diseases, such as Trisomy 13 or 18
- Neurological or seizure disorders, such as severe cerebral palsy
- And many others
Comprehensive Pediatric Programs
An important goal of the pediatric programs is helping families access services at every stage of their medical journey—with an emphasis on keeping the family unit functioning as normally as possible.
The children in Chapters Health’s pediatric programs may require different services at different times during the course of their illnesses. With the pediatric programs being so comprehensive, patients can easily transition between levels of care. For instance, if children need help with symptom management or better treatment tolerance for their illnesses, they can receive palliative care services through Partners in Care (PIC) in Hardee, Highlands, Hillsborough and Polk counties.
Opened in 2015, the Pediatric Palliative Care Clinic by Chapters Health Palliative Care at St. Joseph’s Children’s Hospital offers regular follow-up symptom management on an outpatient basis. This clinic is the only one of its kind in west Central Florida. It is a tremendous advantage for families because they don’t have to travel long distances for specialized palliative care when it’s in their own back yard.
“There are three types of patients we see at the clinic,” explained Dr. Bash. “There are patients who were seen on consultation at the hospital and now need follow up. There are children who were referred by their primary care physician who might need palliative care services by way of the PIC program. And lastly, there are women referred by their OB/GYNs as they might need to understand all of their options when faced with the likelihood of a baby who might not survive much past six months post birth.”
If a child’s health does not improve, hospice services are available at Good Shepherd Hospice, HPH Hospice and LifePath Hospice. “We find that families of terminally ill children truly know when hospice is needed and are just waiting for someone to ask,” said Dr. Bash.
Introducing the Pediatric Program Team
With all pediatric services, the overall goal is providing care and facilitating any changes seamlessly, which is accomplished by a team of caregivers who are well-known and trusted by patients and families.
Under Chapters Health pediatric programs, the team includes:
- Nurse practitioners
- Social workers
- Hospice aides
They work together as a team with a focus not just on the patient but the entire family, including healthy siblings.
Listening is THE Key
Chapters Health’s pediatric programs fulfill the critical needs of families who might not otherwise know where to turn for help because we take time to work through what is going on and what their different choices are for care moving forward.
“First, we listen to them—and then we have conversations, slowly and very clearly. Children and parents who have received bad news that they’re not processing very well need to take it slowly and really talk about what’s going on,” shared Dr. Bash. “It provides a lot of clarity—both for them and for us—because we’ve taken the time to work through with each of them what their different choices are.”
At Chapters Health, life-limiting or life-threatening illnesses mean patients and families can be in control. Children participate in conversations. The healthcare providers listen and empower children so that they realize they’re truly at the center of everything the pediatric programs provide.