Surgical Interventions With an Interdisciplinary Approach at End of Life.

Abstract

Surgical care in critically ill children is an important component of the interdisciplinary approach to delivery of high-quality comprehensive care. Yet the traditional hospice model has often excluded surgical care because of perceived risk of suffering and questions of futility in the face of a terminal condition. Pediatric palliative care is distinct from its adult counterpart in its relatively low prevalence of death and longer length of hospice enrollment. Fewer than 45 000 children die in the United States each year, and the average length of pediatric palliative care involvement is >300 days, with only 30% mortality at 1 year.1,2 Thus there are many children facing life-threatening conditions whose families are constantly deciding whether and how to intervene, medically or surgically.In this issue of Pediatrics, Traynor et al describe the surgical procedures that occur in terminal hospitalizations at 49 children’s hospitals using data from the Pediatric Health Information Systems database,3 finding that nearly half of children aged <20 years have a surgical procedure in their terminal hospitalization. This finding is important for surgeons engaging in shared decision-making with patients receiving palliative care and their families.4–6 This also emphasizes the importance of having surgeons as allied members of the interdisciplinary palliative care team.Traynor et al also highlight racial disparities in the rates of surgical care for Hispanic, Asian American, and Black children compared with White children during this final admission. Health disparities have been shown at end of life in adult and pediatric care.7,8 Although the data do not yield the reason behind the disparity, as a field we should be paying specific attention to the interventions that are offered to patients and preventing systemic bias.Missing from this work is the context of the decision to pursue surgery. What was the surgeon’s and family’s understanding of their child’s pending mortality before pursuing intervention? Did the family know this was a terminal condition and/or hospitalization? Was the child’s code status discussed before pursuing surgery? Similarly, this study does not reveal the surgeon’s or the family’s intentions with surgery (eg, life prolongation or to mitigate a distressing symptom). Although it is important to know that up to 50% of families are choosing surgeries during a terminal hospitalization, Traynor et al rightfully acknowledge the need for future research, in which researchers ought to consider how many families chose not to undergo surgery, who had palliative care decisional support when considering surgery, and how many patients received surgery but then died after discharge.9 We strive for goal-concordant care and therefore should focus on aligning care with family preferences and values.What is clear from the work by Traynor et al is that families and surgeons are frequently pursuing surgical interventions in terminal hospitalizations. Pediatricians need to be aware of this, embrace that surgery has a role in end-of-life care, and join with our surgical colleagues to ensure outcomes that meet the needs of patients and families, even while in hospice.