Clinician end-of-life experiences with pediatric Muslim patients at a US quaternary care center

Abstract

CONTEXT: A small, growing body of data exist discussing the experiences of Muslim patients with the palliative care system, both in the United States and abroad, as well as providers’ experiences with Muslim patients. However, no studies evaluate clinician experiences with Muslim patients in the United States, and none address the unique dynamics of pediatric clinician experiences with Muslim patients and their families in the EOL setting. OBJECTIVES: The purpose of this study is to perform a thematic analysis of clinician experiences with pediatric Muslim patients and families at the end of life. METHODS: This was a qualitative study of pediatric clinicians at Duke University Medical Center in the Pediatric Intensive Care Unit, Pediatric Cardiac Intensive Care Unit, and Pediatric Bone Marrow Unit from August 2018 to February 2019. We conducted semi-structured interviews with nurses, attending physicians, and social workers to assess participants’ experiences caring for Muslim patients and families. We analyzed interview transcripts using descriptive content analysis with NVivo10. RESULTS: We interviewed 16 clinicians at Duke University Medical Center Pediatric Intensive Care Unit, Pediatric Cardiac Intensive Care Unit, and Pediatric Bone Marrow Unit. Five physicians, 5 social workers, and 6 nurses were interviewed. The majority of providers were female, Caucasian, and Christian in an institution where Muslim patients are a significant minority. Several themes emerged highlighting language barriers, difficulty engaging with Muslim families, variations in approach to care and communication, discomfort with gender roles, moral distress with unrelatable decision-making, and external pressures on patient decision-making. CONCLUSIONS: A thematic analysis of pediatric clinicians at a quaternary care center in the Southern United States yielded several prominent themes. Many clinicians recognize they likely provide disparate care to minority patients for a variety of reasons encompassing the above barriers. As we work to care for an increasingly diverse patient population, more research into barriers to care and effective educational methods is needed.