End-of-life decision-making and satisfaction with care: parental perspectives

Area of Science:

• Pediatric critical care medicine
• Bioethics
• Parental decision-making

Background:

• End-of-life decisions for critically ill children are complex and emotionally challenging for parents.
• Understanding parental perceptions is crucial for improving care and support during this difficult time.

Purpose of the Study:

• To evaluate parents' perceptions of life support limitation/withdrawal decision-making processes for critically ill children.
• To assess parents' views on their child's death in the pediatric intensive care unit (ICU).
• To determine parental satisfaction with care provided during end-of-life care.

Main Methods:

• A survey utilizing structured telephone interviews was conducted.
• Seventy-eight parents whose children died in a university teaching hospital's ICU between 1995 and 1998 participated.
• Data collected included perceptions of decision-making authority, factors influencing decisions, and satisfaction with care.

Main Results:

• Physician recommendations, diagnosis, and expected neurologic recovery were key factors in decision-making.
• Parental trust in physicians significantly correlated with satisfaction in decision-making authority.
• Parental presence at the time of death was desired, and perceived quality of care was linked to feeling informed and staff sympathy.

Conclusions:

• Physician recommendations and trust are paramount in guiding parents through end-of-life decisions for children.
• Ensuring parental presence, providing adequate information, and fostering a sympathetic environment can support healthy grieving.
• Improving communication and support in the pediatric ICU can enhance the experience of parents facing child death.