Living with Dying in the Pediatric Intensive Care Unit: A Nursing Perspective

Abstract

Background Despite reported challenges encountered by nurses who provide palliative care to children, few researchers have examined this phenomenon from the perspective of nurses who care for children with life-threatening illnesses in pediatric intensive care units. Objectives To describe and interpret the essence of the experiences of nurses in pediatric intensive care units who provide palliative care to children with life-threatening illnesses and the children’s families. Methods A hermeneutic phenomenological study was conducted with 12 pediatric intensive care unit nurses in the northeastern United States. Face-to-face interviews and field notes were used to illuminate the experiences. Results Five major themes were detected: journey to death; a lifelong burden; and challenges delivering care, maintaining self, and crossing boundaries. These themes were illuminated by 12 subthemes: the emotional impact of the dying child, the emotional impact of the child’s death, concurrent grieving, creating a peaceful ending, parental burden of care, maintaining hope for the family, pain, unclear communication by physicians, need to hear the voice of the child, remaining respectful of parental wishes, collegial camaraderie and support, and personal support. Conclusion Providing palliative care to children with life-threatening illnesses was complex for the nurses. Findings revealed sometimes challenging intricacies involved in caring for dying children and the children’s families. However, the nurses voiced professional satisfaction in providing palliative care and in support from colleagues. Although the nurses reported collegial camaraderie, future research is needed to identify additional supportive resources that may help staff process and cope with death and dying.