Pediatric palliative care patients often present to the ED at the end of life. Goals of care are not always discussed, according to the authors of a recent study.1

“One of the things the parents of kids with complex care needs worry about most is going to the emergency department with their child,” says Rebecca Benson, MD, PhD, medical director for clinical ethics and director of the ethics consult service at University of Iowa Hospitals and Clinics.

Researchers analyzed 290 patients followed by the pediatric palliative care team. Of this group, 94 presented to the ED, 36 died in the hospital after an ED visit, and 18 died within 72 hours of admission. Discussion about goals of care occurred with 37% of patients.

For all parents, ED visits often entail a long wait and painful tests and procedures. For parents of palliative care patients, it also means dealing with providers who are unfamiliar with their child’s condition or specific medical background. “Adding to that stress is the concern about whether they will be clearly able to make their goals and preferences about their child’s care known,” Benson notes. Some patients or their parents have made decisions to avoid certain types of interventions, such as intubation. “During a health crisis in the ER is a very challenging time to have or explain these preferences,” Benson says.

For this reason, Benson encourages completion of a Physician Orders for Life-Sustaining Treatment (POLST) form where appropriate and available. This puts goals and advance care planning into a set of medical orders that are transferrable across healthcare settings. “If they do not want resuscitation attempted, they can produce the form,” says Benson. This shows they have talked to a licensed practitioner who knows their child. On the other hand, some pediatric palliative patients have received very good responses to life-sustaining interventions. Therefore, parents want them attempted.

“But the medical team might balk based on the child having a diagnosis that is thought to be ‘lethal’ or ‘fatal,’” Benson says. Again, if the parents have documentation of goals of care as discussed with the team that typically cares for their child, it provides much-needed background.

Similarly, a completed Emergency Information Form (developed by the American Academy of Pediatrics and American College of Emergency Physicians) can shed light on presenting problems and management tactics.

If families prepare proactively for emergency situations, concludes Benson, “they are more likely to be successful in sharing their goals for their child’s care in a way that will lead to the best care being provided.”


  1. Gaucher N, Humbert N, Gauvin F. What do we know about pediatric palliative care patients consulting to the pediatric emergency department? Pediatr Emerg Care 2018; Sep 25. doi: 10.1097/PEC.0000000000001620. [Epub ahead of print].