Palliative Care in the Pediatric Emergency Department: Findings From a Qualitative Study

Abstract

Children with medical complexity represent a fragile population and account for the majority of patients followed in pediatric palliative care. Little is known in regard to the role of the emergency department (ED) in caring for the families of children with medical complexity. Semistructured focus groups were held with health care professionals from pediatric emergency medicine, palliative care, complex care, and intensive care to explore their perspective on pediatric palliative care in the ED. Data were transcribed and analyzed with NVivo software, and thematic analysis and theoretic sampling were performed. From January to October 2016, 58 participants were interviewed. Difficulties providing pediatric palliative care in the ED are related on the one hand to characteristics specific to the ED, such as its culture and its health care professionals' strong emotional responses when caring for children with medical complexity, and on the other hand to factors extrinsic to the ED; mainly, lack of continuity of care. For critically ill children with unknown goals of care and potential for end of life, professionals in the ED should evaluate the clinical situation, contact known health care teams, remain open to families' preferences, alleviate distressing symptoms, and create a caring environment. Communication between teams is targeted by health care professionals to facilitate and improve patient flow and care. Although perspectives differ in regard to how to provide care for pediatric palliative care patients in the ED, several barriers to providing high-quality emergency pediatric palliative care can be overcome.