By Renee Bledsoe LPN, CHPLN

Talking about children in hospice care is tough. What is tougher is being the parent or caregiver of a child who is very seriously ill and not having the opportunity to give that child the life that they thought they’d have together. The goal of hospice care for pediatric patients is to help very seriously ill children and their families to have as much of that life as possible.

How does this happen? It happens when a child is cared for in his or her own home. It happens when the parents or caregivers have the support of an entire medical team making home visits regularly. It happens when the fear of not knowing what to do is alleviated through caregiver coaching and 24/7 on-call support by a team of doctors, nurses, social workers, personal care aides, chaplains, grief counselors and volunteers.

This team is Hospice of the Panhandle’s pediatric care team.

While Hospice of the Panhandle has been providing hospice care to children for many years, its pediatric care team is just celebrating its second anniversary. This team began when three Hospice staff members attended the PANDA Cubs Primary Palliative Care Training Program that is provided by Children’s National Medical Center in Washington D.C. Social worker Julie Sayre and nurses Adaira Green and Renee Bledsoe completed this 12-month training program in May of 2020 and joined an elite group of clinicians who specialize in delivering high-quality palliative care to infants, children and young adults.

Hospice of the Panhandle is currently growing its pediatric care team and has two more staff members enrolled in the PANDA Cubs Program at Children’s National Medical Center so that Hospice can be even more equipped to provide a high level of care to its youngest patients.

Since the team began, it has served 11 patients.

“While it is difficult to imagine that an infant or child may need hospice care, many are not even aware that Hospice even provides care to pediatric patients,” said Green, a nurse with Hospice’s pediatric care team. “We want our community to know that we are here for them.”

Only a small percentage of Hospices care for pediatric patients, and, in the past, few families have enrolled their children into hospice care. Often this is because families don’t know that there is an important difference between the guidelines for children to receive hospice care and those for adults to receive hospice care.

In 2010, the Affordable Care Act removed the requirement that children who have Medicaid or the Children’s Health Insurance Program (CHIP) forgo curative care in order to receive hospice. Simply put, children can receive treatments to cure their illness and have hospice care at the same time. This applies to anyone under the age of 21. If the treatments work, the child is discharged from the hospice program and can be readmitted if the child ever needs hospice care again.

The pediatric care team walks with the family through the child’s illness, teaching them how to care for their child’s physical, emotional, psychological and spiritual needs.

For families with seriously ill children, the family’s goal is often to maximize quality of life and give the child as normal of a life as possible. The pediatric care team can be instrumental in helping the child to stay out of the hospital and at home, doing the things that he or she enjoys to the best of his or her ability.

In the past, Hospice of the Panhandle has even helped children continue to go to school by working with schools to develop emergency plans so that everyone knows what to do if a child’s illness causes him or her distress during the school day. For some children, going to school is an extremely important way to stay connected to friends and to continue to have a sense of normalcy in his or her life amidst doctors’ appointments, trips to the hospital, surgeries, treatments and more.

Hospice teams have helped pediatric patients go on family outings and vacations and have birthday parties. They engage with the patient and support whatever is most important in that child’s world. From talking about SpongeBob to playing practical jokes, the pediatric care team meets patients where they are and helps them to just be kids.

The mission of the pediatric care team is to give families more choices in relation to the what is best for their child and for their family, to foster family well-being and to ensure the best quality of care for these young patients.

Because children are often working with providers at specialized hospitals, a primary role of the pediatric care team becomes communicating with a child’s many medical providers. This can take this time-consuming burden off the parents and allows the parents to focus on spending quality time with their child(ren).

Choosing hospice care is not disconnecting from the child’s other medical providers. It actually helps them stay better connected to the child because the hospice nurse can report directly to them on how the child is doing. This allows the child’s doctors to make better decisions regarding curative treatments, medications and more.

The team also helps families communicate with each other and work through the emotionally challenging parts of caring for a seriously ill child. The team can teach coping strategies for handling stress and grief. They can help parents navigate the dynamics of having other children who also need attention and have questions and feelings about what is happening with their sibling.

The pediatric care team can also connect the family to community resources and alleviate some of the financial burden by providing formula, diapers and medical equipment to pediatric hospice patients.

There are many more benefits to involving Hospice of the Panhandle’s pediatric care team in the care of a seriously ill child. If you would like to know more about how the pediatric care team can help children, call (304) 264-0406 or go to

Hospice of the Panhandle is a non-profit healthcare hospice provider that serves the residents of Berkeley, Hampshire, Jefferson and Morgan County in West Virginia.