Initiating Comprehensive Pediatric Palliative Care Models

After following the palliative care updates in the adult world, it seems to me that we, as clinicians, are slowly starting to receive the message that in many cases, palliative care (as in comprehensive symptom management and patient-centered goals) should be initiated soon after diagnosis. This likely isn’t occurring with great uniformity yet, but at least many major oncology societies and organizations have been pushing the message.

I would love a similar call to action in the pediatric world. However, from what I’ve seen, this is not the case.

Surprisingly, pediatric oncology patients represent a small percentage of the 50,000 children who die each year, but they do represent a larger percentage of the 500,000 children diagnosed each year with a life-limiting or life-threatening condition. Three-fourths of pediatric deaths occur in hospitals, mostly in the ICU, where aggressive therapy is the norm (Davies et al., 2008).

In 2000, the American Academy of Pediatrics initiated concrete pediatric palliative care recommendations for an integrated palliative care model early in the treatment trajectory (American Academy of Pediatrics, 2000). However, these recommendations have not been fully integrated in many institutions.

For pediatric patients, the terms "palliative care" and "hospice" are still used interchangeably, even though they can have very different goals. There have been many cited barriers to palliative care and hospice for children, including the following (Davies et al., 2008):

• Limited financial resources for specialized pediatric care
• Limited access to specialty care (particularly in rural settings)
• Communication barriers among various members of the treatment team
• Hope for cure
• Fragmented care
• Reimbursement issues
• Lack of training and expertise
• Lack of evidence-based care models/pediatric palliative care research

When clinicians were surveyed about what they perceived as barriers, the most common responses were uncertainties in prognosis and discrepancies in treatment goals between staff and family members (Davies et al., 2008).

I will be doing followup blog posts to explore this issue further. To start the conversation for those who work in pediatric oncology, what do you perceive as the largest barriers for implementation of palliative and hospice-based care delivery?