Children’s Haven Pediatric Hospice Program Completes First Year of Pilot Program

VNA’s roots have always been to care for those who needed it most. Helping to establish the Medicare hospice benefit still available today, VNA was one of the first hospices in the state of Texas and the first nonprofit hospice to obtain licensure in 1978.

In December 2020, VNA began working closely with the palliative care team at Children’s Health in Dallas and identified an overwhelming need for pediatric hospice in the community. As another mission-driven example of our tradition of providing care to the most vulnerable in our community, VNA launched the Children’s Haven Pediatric Hospice Program in January 2021.

With our team of specially trained clinicians, VNA Children’s Haven provides in-home care and support to children suffering from life-limiting illness and their families. The goal of the program is to help these children and their families navigate the hospice journey with grace and compassion.

Our team cares for patients prenatally through the age of 21 as appropriate. A skilled interdisciplinary team comprised of a board-certified hospice and palliative physician, registered nurse case manager, child-life specialist, social worker, chaplain/spiritual support and volunteer(s) works with patients’ physicians to develop the best approach to care.

Differing from adult hospice, pediatric hospice allows patients to continue receiving treatments while on hospice services. This concurrent care allows families to receive comfort, education and support at home without having to choose between treatment options and the support and help they need.

Utilizing the pediatric standards of care put forth by the National Hospice and Palliative Care Organization (NHPCO), Children’s Haven staff are well versed in the needs of the pediatric patients and the families they serve. All pediatric nursing staff are trained through the End-of-Life Nursing Education Consortium (ELNEC) in various pediatric palliative care courses, including perinatal and neonatal palliative care, cultural and spiritual considerations, pain and symptom management, grief and bereavement, and care at the time of death.

Additionally, all registered nurses are required to take and pass a written exam on pediatric nursing assessment skills. VNA remains committed to these patients from prenatal to 21 years of age to support their unique needs.

The heroic stories of the patients, families and care teams are inspirational. We recently had the honor of visiting with 18-year-old patient, Chloe, and her family in Kaufman. Chloe suffers from a terminal brain tumor but maintains an incredibly upbeat attitude. Chloe’s nurse, Michelle, is helping her comfortably spend her last days at home with her family.

Chloe’s appearance has changed dramatically in the past year due to medications and paralysis from the tumor. Like most teens, she can be concerned with her appearance, but has developed a unique perspective.

“I can choose to be upset with my looks and situation, but everyone who loves me knows it’s still me…I’m still Chloe!”

She certainly is Chloe—and VNA is honored to walk alongside her and her family during this journey that is both difficult and precious. We continue to expand the program to meet the tremendous need for quality end-of-life pediatric care thanks to the support of our generous donors.

If you are interested in learning more about how you can support VNA Children’s Haven through either financial or volunteer support, please contact Chris Culak at (214) 689-2601 or culakc@vnatexas.org.