Moral distress and ethical climate in pediatric oncology care

Abstract: Background: Despite the high survival rates, childhood cancer still is a life-threatening disease. Many ethical dilemmas and constraints challenge healthcare professionals who provide care for these children, causing moral distress and reducing the quality of care. Aims: To explore experiences of moral distress and ethical climate in Nordic pediatric oncology care. Methods: A cross-sectional survey study was carried out among healthcare professionals at twenty Nordic pediatric oncology centers: In addition, an interview study with a grounded theory approach was conducted among pediatric nurses working at a university hospital in Sweden. Results: The 543 healthcare professionals who completed the survey, assessed situations that involved unsafe staffing, lack of time, and poor continuity of care as the most frequent root causes of moral distress. On average only 31% of healthcare professionals could almost always practice care the way they thought it should be practiced. Perceptions varied significantly between individuals and centers, but not between countries. Moral distress was less frequent at the centers with an ethical climate. Those who considered leaving their jobs because of moral distress, reported higher levels of moral distress and perceived the ethical climate as less positive, compared to the ones who had no intention to leave. The interviews with 25 nurses confirmed that organizational constraints often challenged nurses’ endeavors to provide timely, safe care to sick children. While healthcare professionals in general were attentive to patients’ and parents’ wishes, nurses perceived that children’s voices too often were overpowered, leading to unnecessary procedures and limited truth-telling. Collegial support and collaboration, as well as savoring good moments and joys of pediatric nursing, motivated nurses to stay. Conclusions: Organizational constraints were the leading cause of morally distressing situations in the Nordic pediatric oncology care. To proceed from here, it is essential to ensure appropriate staffing and continuity of care. All staff members need to listen to children’s voices, and there should be more opportunities to interdisciplinary discussions about children’s best interests.