A new article by Lisa Lindley, PhD, RN from the University of Tennessee and Hospice Analytics shows Florida hospice providers offer 500% more pediatric hospice services compared to the national average.
Pediatric hospice care is similar to adult hospice care in that physical, emotional, psychosocial and spiritual care services are provided when a child is within the last six months of life, if their disease runs its normal course.
In her recent article, Pediatric Hospice and Palliative Care: A Little Knowledge Goes A Long Way (Lindley and Hospice Analytics, 2015), Lindley highlights several reasons why pediatric hospice care can be challenging for hospice providers. Some of these reasons include: children can be in one of any of the four developmental stages (there is only one for adults), they often are dying from a rare and complex disease, they can have more diverse family dynamics than elderly patients, and they often receive hospice care within days before they die instead of weeks to months like the average adult.
Dr. Lindley notes, too few providers are willing to offer pediatric services despite the need and minimal financial impact.
Florida’s uniquely large hospice programs have the expertise and capacity to handle complex pediatric end of life and chronic illness cases. They offer an array of services for children up to the age of 21.
In 2002, Florida Hospice & Palliative Care Association initiated a Partners In Care, Together For Kids (PIC-TFK) program, with Florida’s Children’s Medical Services (CMS) and Florida Medicaid. The PIC-TFK program began offering specialized palliative care support services for children in 2005 that can be accessed along with other CMS resources.
Additionally, the Medicaid Concurrent Care is another avenue through which seriously ill children that are eligible can receive access to hospice and palliative care, simultaneous with curative care.
Stacy Orloff, Ed. D., LCSW, ACHP-SW, Empath Health’s VP of Innovation and Community Health, and longtime pediatric advocate says, “Florida hospices have a long-standing commitment to providing excellent end-of-life care to children with a terminal illness and their families. The relationship between the Florida Hospice & Palliative Care Association and hospice providers allows staff to access current research, policy updates, and best practices that help bring pediatric care to the forefront.”
Notwithstanding the challenges, Florida hospice providers recognize the need for children and their families to have access to high quality care.