Pediatric Palliative Care Coalition Forms in the Northwest

Providers across seven northwestern states have formed a coalition aimed at overcoming barriers to pediatric hospice and palliative care.

Researchers from the American Academy of Hospice and Palliative Medicine (AAHPM) invited providers to participate in the Northwest Pediatric Palliative Care Coalition in order to gain a better understanding of the roadblocks their programs frequently face.

Roughly 64 individuals from 37 pediatric hospice and palliative care programs in Alaska, Colorado, Idaho, Montana, Nevada, Oregon and Washington accepted and responded with feedback.


“There is a need to support pediatric hospice and palliative care programs throughout the U.S. as they may care for only a limited number of pediatric patients per year and may have clinicians in their first five years of pediatric hospice and palliative care practice,” the AAHPM research indicated.

Leading barriers that providers listed as occurring “always, often, or sometimes” in their programs included a lack of trained staff (84%), lack of financial support (59%) and access to home infusions (48%), according to the AAHPM research findings.

Though a rising number of hospices and other providers have taken steps to better scale pediatric services, most seriously ill children lack sufficient access to palliative care.


Staffing pressures are a leading factor, such as limited exposure to specialized training and a dearth of qualified clinicians. Additionally, clinicians often lack understanding of pediatric patients’ specific needs and conditions that differ from adults in terms of diagnoses, illness trajectories, medication dosing and equipment.

Insufficient reimbursement is another obstacle in access to pediatric palliative care. While value-based care models have widened paths of payment, these are predominantly designed around the needs of seniors.

Through feedback from providers in the coalition, AAHPM aims to define the services, training and educational needs of pediatric hospice and palliative care programs across the Northwest.

Like many pockets around the United States, providers in the Northwest often face hurdles in reaching seriously ill children and their families, particularly in low-resource, rural and remote areas.

Coalition providers prioritized a need to build up education for clinicians around providing family and caregiver psychosocial support, having goals of care conversations and discussing symptom management.

Patients in remote regions often have fewer health care options than those in more densely populated communities. Compared to urban residents, studies have shown that rural patients often have fewer financial resources and lack caregiver support due to distance from family and friends.

Though more than a quarter (26%) of coalition providers reported that they have offered pediatric hospice and palliative care for more than two decades, nearly half (40%) indicated serving less than five annually.

“Coalitions that can provide networking and education focused on topics such as parent/caregiver psychosocial support, goals-of-care communication, and symptom management may be most beneficial,” the AAHPM research found.

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