Although the pediatric intensive care unit (PICU) is associated with life-prolonging therapies, greater than 80% of families elect to forego this treatment within 24 hours of a child’s death. The value-based factors that influence this decision remain unclear.
Objective:
To contextualize elements of decision-making when a child’s family declines cardiopulmonary resuscitation (CPR), using holistic values and ethical principles and standards as a framework.
Design:
A complementary qualitative analysis of mixed-methods data collected retrospectively from the electronic medical record.
Setting/Participants:
The PICU of a Midwestern U.S. quaternary pediatric hospital. Participants were family decision-makers and medical providers of 19 purposefully selected children and adolescents who died after 24 hours in the PICU from 2013 to 2022.
Measurements:
We utilized thematic analysis to inductively identify themes contextualizing elements of end-of-life decision-making during the child’s terminal PICU admission. Narrative documentation in PICU and pediatric palliative care (PPC) medical progress notes was analyzed by three coders. Emergent themes were defined, consolidated, and discussed until achieving consensus.
Results:
We present Factors Affecting Decision-Making: Sources of family support, Personal values and conflict, Spiritual beliefs and values, Ethical values and standards, and Rhetoric/Language. The final theme includes idioms, accepted and unaccepted terminology, and the use of interpreters.
Conclusions:
Psychosocial, ethical, and spiritual factors may impact a child’s or family’s decision to forego high-intensity care like CPR at the child’s end of life. Providers should invite consideration of value-based factors when guiding family decision-making, which may be further facilitated by consulting PPC, patient advocacy, and/or ethics.
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