Palliative care

Palliative (pronounced pal-lee-uh-tiv) care is care focused on improving quality of life and minimizing the suffering of children with advanced, complex and life-threatening illnesses. Palliative care providers, nurses, social workers, chaplains, and certified child life specialists work closely with your child’s doctor and team to help manage pain and symptoms, set goals, and coordinate care in inpatient, outpatient and home settings.

Your child can receive palliative care along with other treatments. The purpose of palliative care is to help ease your child’s pain and other symptoms while providing emotional and other support to your entire family. In fact, your child can start getting palliative care as soon as you learn about your child’s illness. Palliative care can help all children, from newborns to young adults, and their families when a child is diagnosed with a serious illness.

Yes. Your child does not have to change to a new primary care doctor or pediatrician when palliative care begins. The palliative care team and your child’s doctor work with you to decide on the best care plan for your child and family.

Hospice is a robust set of home-based palliative care services designed to support children and their families when a serious illness becomes life-threatening. Children can receive the support of a pediatric hospice program when one of their providers becomes concerned that death from their underlying illness may occur within the next six months.

The Affordable Care Act mandates that patients under age 21 may continue to receive curative or life-prolonging treatments while enrolled in a pediatric hospice program. This insurance requirement is referred to as the Concurrent Care for Children Requirement, and while the law only applies to children enrolled in their state Medicaid program, most private insurance providers will also honor this model of hospice care. Additional information about the Concurrent Care for Children Requirement can be found on the website for the National Hospice and Palliative Care Organization.

Palliative care is appropriate for all ages and at any stage of a serious illness. But we recommend requesting palliative care early in your child’s illness. The sooner you request palliative care, the sooner we can create a care plan that helps manage your child’s pain and symptoms, and the emotions that may come with a serious illness. You can ask your child’s doctor about scheduling a palliative care consultation.

Palliative care referrals must come from one of your child’s doctors, but you can ask any member of your child's care team about a palliative care consultation. You can request a palliative care consultation during a hospital stay, at a clinic visit, during a well-child check, or any interaction you may have with your child’s care team. Tell your child's doctor, nurse or other care team member that you are interested in learning more about palliative care as an extra layer of support.

Additionally, one of your child’s providers may tell you that they would like to consult the palliative care team. They should be able to tell you why they are making the referral and answer any initial questions you may have.

If you have questions about whether your child may benefit from a palliative care or hospice referral, please call our office at 512-324-0197.