Clinicians caring for children in their final weeks, days, and hours can use an American Academy of Pediatrics (AAP) report offering guidance for pediatric end-of-life care.1
“The report addressed a prior practical gap in guidance,” says Jennifer Linebarger, MD, MPH, FAAP, FAAHPM, the report’s lead author and a pediatric palliative care physician at Children’s Mercy Kansas City.
Linebarger and colleagues conducted a literature search for consensus guidelines on end-of-life-care in pediatrics. They found only some case studies and papers on specific pediatric populations. “We wanted to make sure that something meaningful existed for pediatric providers. The hope was to make it user-friendly for the frontline clinician,” Linebarger says.
The AAP report includes a review of essential elements of care for patients and families. The authors covered discussions on goals of care, how to establish end-of-life care goals, advance care planning, and palliative and hospice involvement. For instance, clinicians hope to allow patients to die in the location they prefer, but first they need to remember to ask the patient and family where that is, and consider together the supports needed to make it happen.
One challenge was how to make all that information digestible in a single guidance, useful for all providers.
“We went at it with the hope that we would be able to impart words of wisdom to somebody who might be approaching this for the first time,” Linebarger says.
Linebarger says the guidance might be most useful to providers at hospitals in one of the pockets of the country without access to pediatric palliative care, where such care falls to the general pediatrician. The guidance offers specifics for how to arrive at a mindset of “parallel planning,” where the family hopes medical interventions are effective but also prepares for the worst-case scenario.
The most important thing, according to Linebarger, “is to help families get to a place of balancing both that hope and that worry, and think through what’s next and know we’re all in this together.” n
REFERENCE
1. Linebarger JS, Johnson V, Boss RD, et al. Guidance for pediatric end-of-life care. Pediatrics 2022;149:e2022057011.
A report includes a review of essential elements of care for patients and families. The authors covered discussions on goals of care, how to establish end-of-life care goals, advance care planning, and palliative and hospice involvement.
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