Pediatric Palliative Care

What is Pediatric Palliative Care?

Many people believe hospice is only for adults or signifies giving up hope. In reality, pediatric palliative care enhances the quality of life for both the child and their family during a challenging time. A common misconception is that hospice care hastens death; however, its true purpose is to provide comfort and support by addressing the child’s physical, emotional, and spiritual needs.

Choosing hospice for a child does not mean discontinuing all treatment. Hospice works alongside curative treatments to manage symptoms and provide comprehensive care tailored to each child’s situation. Pediatric palliative care programs offer additional services, such as grief counseling for siblings, parents, and loved ones.

The team also advocates for specialized equipment and services not covered by insurance. The Hospice Case Manager collaborates with current care providers to ensure cohesive and compassionate care, maximizing the child’s comfort.

Understanding hospice’s role helps to make informed decisions and offers access to the full spectrum of compassionate care available. Hospice focuses on creating meaningful moments and providing comfort during a difficult journey.

 

Meet Ella

Ella, a local resident, suffered a birth injury that resulted in severe brain damage. Despite her disabilities, Ella’s sparkling personality shone through. She loved music, Tarzan, and her two younger brothers. Unfortunately, Ella was dealt an unfair hand in life and passed away in her home surrounded by her loving family and hospice team at only three years old.

With the support of Hospice of Orange & Sullivan Counties’ specialized pediatric team, Ella was able to remain at home. The hospice team provided additional services and equipment not covered by insurance, arranged for medications to be delivered directly to her home, and worked closely with her doctor. These efforts helped ease her parents’ stress, allowing the family to focus on creating meaningful moments with Ella.

The interdisciplinary team continues to support her siblings, parents, and grandparents as they navigate this difficult time.

Ella’s story renewed Hospice of Orange & Sullivan Counties’ commitment to raising awareness about the need for pediatric palliative care within its communities. The organization’s mission is to be the leading community resource, providing patients and their families with compassionate physical, emotional, and spiritual end-of-life care with comfort, dignity, and respect. Its core purpose is to ensure quality end-of-life care for every eligible patient in its service area, regardless of age.

What is concurrent care?

While adult patients must forgo curative treatments to receive hospice care, children under 21 can continue pursuing curative measures while also receiving hospice care. This approach, known as concurrent care, provides both comfort measures and the hope for a cure, significantly enhancing the quality of life for the child and their family.

Who qualifies for Pediatric Palliative Care?

Pediatric palliative care is available to children under the age of 21 with a life-limiting condition, as determined by a physician. Pediatric palliative care is available through Medicaid and most commercial insurance.

Additional Services

Thriving Families Bereavement Support Group

Thriving Families is a specialized support group for children. Adults can register for Thriving Families Grief Support Group by calling a Bereavement Counselor, who will assist with registration requirements.

Why Hospice for my child?

There are no children’s hospitals in Orange or Sullivan counties, which limits the availability of palliative care for children in these areas. As their child’s illness progresses, many families find themselves traveling long distances to Albany, Westchester, or Manhattan for treatment. This often adds to the emotional and physical strain of the situation.

Pediatric palliative care offers a solution by allowing children to receive additional comfort care at home, focusing on symptom management while they continue receiving active treatment for their terminal illness. The hospice interdisciplinary team provides comprehensive care that helps the child remain in the comfort of their home, easing the burden on the family and preventing unnecessary hospital stays when appropriate.

“We cannot change the outcome, but we can affect the journey.” – Ann Richardson

Hospice of Orange & Sullivan Counties’ Pediatric Palliative Care program educates and raises awareness among OB/GYNs, pediatricians, family practices, caregiver networks, children’s hospitals, and other local and regional resources. This advocacy supports concurrent care for terminally ill children, enabling co-management of the child and their family as they face the challenges of a life-limiting illness in the comfort of their home. Grief support is also available for those you have experienced perinatal loss.

By connecting children with life-limiting conditions to a pediatric palliative care program, families receive an added layer of support through the hospice interdisciplinary team. This approach often reduces hospitalization by effectively managing the child’s symptoms at home, ensuring greater comfort and stability for both the child and their family.