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Hospice Austin’s Pediatric Program

Novella beach

Anyone who does anything to help a child
in his life is a hero to me.
– Mr. Rogers

Traditionally, patients forgo curative treatment when choosing hospice care so they can experience a better quality of life aimed at controlling their physical symptoms and addressing their emotional and spiritual needs.  But for parents of pediatric patients, this has always presented an impossible, wrenching choice.  What parent of a 9-week-old, a 9-year-old or a 19-year-old could choose to surrender curative measures, no matter how slim the hope of success?

Fortunately, parents are no longer subjected to that singular anguish. The “Concurrent Care for Children” Requirement (CCCR) of the Patient Protection and Affordable Care Act stipulates that a child who is eligible for and receives hospice care may concurrently receive all other services that are related to the treatment of the child’s condition. That means that, in addition to curative measures, a child’s care may also focus on enhancing the quality of life, minimizing suffering, optimizing function and providing opportunities for personal and spiritual growth.  As that realization has taken root, the healthcare culture and referral sources, as well as patients and their families, are beginning to embrace a dual approach to caring for terminally ill children.

The new model of concurrent care, while a welcome and long overdue benefit for terminally ill children and their parents, has caused the number of children in Hospice Austin’s care to double in the last six months. Pediatric hospice care is extremely complex and costly to provide, requiring specialized staff and lower case loads.  We are increasing our pediatric team in order to serve all of the children needing hospice care in Central Texas.

Pediatric patient cases are typically more complex than adult cases and require nursing expertise specific to pediatric/newborn care.  Many pediatric patients are neurologically impaired, making symptom assessment more difficult and time-consuming.  The typical pediatric patient requires the ordering and tracking of special durable medical equipment (tracheotomy supplies, nasogastric tubes, ostomy bags, oxygen masks, etc.) all in varying sizes as well as special formula and feeding regimens. Comfort and symptom medications need to be individually compounded and closely monitored.  Pediatric patients also require frequent trips to the hospital for concurrent curative treatments.

The psychosocial demands for younger patients are just as complex.  Pediatric patients all have surrogate decision-makers.  Since most are now receiving curative measures while on Hospice Austin’s care, their parents are often unprepared for their child’s rapid decline.  In a nearly constant state of crisis, they require a commensurate amount of staff support and home visits. Many of these parents face huge financial burdens resulting from their child’s illness.  They are often young families with other siblings to tend to and their anxiety, anticipatory grief and bereavement needs, and those of their surviving children, are enormous. Thus, social work and spiritual team members are also called into service more often.

Pediatric specialists are best able to handle these very complex cases. The intense service needs dictate that pediatric care staff carry smaller caseloads.  Newborn And HandWe are moving quickly to expand our program capability and specialized staffing level to meet the rising needs of this special population.

Hospice Austin’s goal is to provide every terminally ill child in our community with access to compassionate end-of-life care that improves their physical comfort, meets their emotional needs, and ensures that wishes and concerns are heard and addressed. Our patients are able to spend their remaining days as free from pain as possible, with dignity, comfort, and in the company of their loved ones.