P0560 - Shared Decision Making in Pediatrics: When the Burden Outweighs the Benefit. A Case Illustration from the Intensive Care Nursery

Background:
Shared decision making between parents, patients, and health care providers is the accepted model of care in pediatrics and is predicated upon the principle of patient autonomy. However, at end of life in pediatric patients, there may be times that this model leads to excessive responsibility for parents. We present a case in which it became clear that it was incumbent on the health care team to preference beneficence and nonmaleficence as guides to decision making when parents were unable to assent to stopping resuscitative efforts.

Case Description:
Baby Girl A was an ex 31 week child in the intensive care nursery with significant MRI brain abnormalities and severe bronchopulmonary dysplasia and pulmonary hypertension requiring tracheostomy and mechanical ventilation. She required frequent, up to daily, efforts at resuscitation that included positive pressure ventilation, CPR and vasoactive medications. Though the team worked diligently with her parents, the parents were unable to assent to a do not resuscitate order despite recognizing the suffering of their daughter. Eventually, the attending neonatologist, with the support of his department, informed the mother that no further resuscitative efforts would be undertaken should the child’s heart stop, as the burden on the child was too great. The baby died soon thereafter, at age 9 months.. After the child’s death, the parents, while grieving, were at peace with the process and expressed their gratitude to her care team.

Conclusion:
While shared decision making is most often the optimal model of care, there are cases, particularly at end of life, in which physicians must help families by taking an informed decisive approach in order to lessen the burden on the family.. Shared decision making is dependent upon the physician and family having full understanding of the utility of further intervention. Further research is needed to help delineate the cases in which this an appropriate and responsible path.