Abstract
Objective: To investigate and compare nurses' perceived care-related distress and experiences in end-of-life situations in neonatal and pediatric intensive care units.Study design: Single-center, cross-sectional survey. Administration of an anonymous self-report questionnaire survey to nurses of two tertiary neonatal intensive care units (NICUs), and two tertiary pediatric intensive care units (PICUs) in Berlin, Germany.Results: Seventy-three (73/227, response rate 32.2%) nurses completed surveys. Both, NICU (32/49; 65.3%) and PICU (24/24; 100.0%) nurses, reported “staffing shortages” to be the most frequent source of distress in end-of-life situations. However, when asked for the most distressing factor, the most common response by NICU nurses (17/49) was “lack of clearly defined and agreed upon therapeutic goals”, while for PICU nurses (12/24) it was “insufficient time and staffing”. No significant differences were found in reported distress-related symptoms in NICU and PICU nurses. The interventions rated by NICU nurses as most helpful for coping were: “discussion time before the patient's death” (89.6%), “team support” (87.5%), and “discussion time after the patient's death” (87.5%). PICU nurses identified “compassion” (98.8%), “team support”, “personal/private life (family, friends, hobbies)”, and “discussion time after the patient's death” (all 87.5%) as most helpful.Conclusions: Distress-related symptoms as a result of end-of-life care were commonly reported by NICU and PICU nurses. The most frequent and distressing factors in end-of-life situations might be reduced by improving institutional/organizational factors. Addressing the consequences of redirection of care, however, seems to be a more relevant issue for the relief of distress associated with end-of-life situations in NICU, as compared to PICU nurses.
Highlights
Most childhood deaths within the hospital, whether anticipated or unexpected, occur in settings primarily designed to provide acute, high-tech medicine intended for aggressive, often invasive, life-extending care: the neonatal intensive care unit (NICU) or the pediatric intensive care unit (PICU)
The survey was conducted at the Charité University Medical Center Berlin, Germany and comprised two tertiary neonatal intensive care units (NICUs), and two pediatric intensive care units (PICUs), a medical-surgical and a hematological/oncological, respectively
The face validity of the questionnaire was assessed by a four-person expert panel which consisted of one NICU nurse, one physician working in pediatric oncology, one member of a parents’ psychological counseling team, and one psychologist with expertise in survey methodology
Summary
Most childhood deaths within the hospital, whether anticipated or unexpected, occur in settings primarily designed to provide acute, high-tech medicine intended for aggressive, often invasive, life-extending care: the neonatal intensive care unit (NICU) or the pediatric intensive care unit (PICU). Palliative care services for children are becoming an accepted element of comprehensive, family-centered care [1, 2], the current nature of NICU and PICU setting presents special challenges to medical staff providing end-of-life care. In caring for highly vulnerable intensive care unit (ICU) patients in end-of-life situations it is essential to evaluate specific factors of distress in nursing staff. Such evaluations have the potential to provide data necessary for (i) protecting ICU-nursing staff from emotional, psychological and physical harm by optimizing institutional support, and (ii) optimizing the quality of care of the dying ICU-patient
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