Editor’s Note: Sam Baldazo is a pediatrics resident at the University of Virginia. He graduated from Dell Medical School at University of Texas, Austin. Sam is interested in value-based care and palliative medicine. -Rachel Y. Moon, MD, Associate Editor, Digital Media, Pediatrics
The words “palliative care” carry different connotations to different people and different groups. To some families, it carries an implication of ‘giving up,’ while to others it may be a welcome source of support and symptom management.
Similarly, some providers may view a referral to palliative care as only for end-of-life care when it can really represent so much more for patients with complex, chronic conditions. Dr. Danielle Ellis and colleagues from Harvard University and the University of Pennsylvania, in their article being early released in Pediatrics this week entitled, “Surgical Intervention in Patients Receiving Pediatric Palliative Care,” make the argument that palliative care can represent more than simply end-of-life care and should be understood to encompass all symptomatic management for children, including and perhaps especially the surgical care they require (10.1542/peds.2022-058905). The authors also provide important data on the palliative care population and the surgical interventions they receive.
This was a retrospective and prospective cohort analysis, with data from over 600 patients collected from 7 pediatric hospitals. These patients were all younger than 30-years-old who had initiation of pediatric palliative care. They found that patients who received surgical interventions in conjunction with their palliative care management were most likely to have surgery involving the gastrointestinal tract, at 42.1% of the study population, and the most frequent surgical intervention was feeding tube placement or exchange. Additionally, approximately one third of children with a complex care condition who were in their terminal hospitalization underwent some form of surgical intervention.
From this study, it is clear that most children who are receiving palliative care will have at least 1 surgical intervention over the course of their therapy. The authors make the case that surgical care for patients undergoing palliative management can actually add value to the overall care of these patients. Although there is a perception that surgical care for pediatric palliative care patients is futile or even harmful, the results of this study show that children who had a surgical intervention were statistically less likely to die while receiving palliative care, and the majority of patients who did have a surgical intervention were alive at 5 years after their first intervention. However, the study authors recognize a few confounding and limiting factors, such as the fact that a child who is more likely to die in the near future may be less likely to benefit from surgical intervention and thus are less likely to have said surgical intervention.
While there is currently a changing wave in perception of what palliative care includes, from exclusively end-of-life care towards a more holistic review of the patient’s well being and the goals of the patient and family, this trend needs to include all subspecialties involved in the care of these complex children. The authors of this study argue specifically that the surgical care for children with complex, chronic conditions who are undergoing pediatric palliative care should not necessarily be considered futile or necessarily harmful, and we should instead recognize this as an important and often beneficial part of palliative management.