More than 60% of pediatric patients who are enrolled in palliative care are seen in a pediatric emergency department (PED) within 72 hours of death. Given that, end-of-life (EOL) conversations are often necessary in the PED setting. So how comfortable are PED clinicians in having EOL conversations with patients and families?
In an article and accompanying video abstract entitled, “‘Death is Not a Dirty Word’: A Qualitative Study of Emergency Clinician End-Of- Life Communication,” which is being early released in Pediatrics, Hannah Kotler, MD, Pamela S. Hinds, PhD, and Amy Hope Jones Wolfe, MD, from Children’s National Hospital and the Johns Hopkins University report their findings from qualitative interviews about EOL communication in the PED (10.1542/peds.2024-067876).
Here are some of the challenges described in these interviews with PED doctors and nurses:
- PED clinicians do not have long-term relationships with the patient and family and perceive that the patient and family may want to discuss EOL with a medical team with whom they are familiar. The patient and family may also have already had these discussions, which may not be documented in the medical record, and the PED clinicians want to honor these goals and values but may not know what they are.
- The PED environment and workflow are not conducive to private and sensitive conversations.
- While the PED clinicians recognize that the parents/guardians are the ultimate experts on the child, there are often multiple family members who are involved in the decision-making, and this can be challenging.
- PED clinicians often do not feel that they are well trained in EOL communication.
- PED clinicians often feel ethically torn about the care that they are providing, particularly when it comes to invasive measures.
There is much more in this thoughtful article. Even if you don’t work in a PED, many of these themes will resonate. We need more training in these important conversations, and partnerships with patients and families will be critical to developing any education in having EOL conversations.