Pediatric Ethics

Despite advances in technology, therapeutics and parent/patient inclusion in decision-making, conflict between family and the medical team does arise. In most circumstances the multi-disciplinary teams involved in these cases can work together and find common ground. In others, despite best efforts, and dedicated time, the family and team remain at an impasse.
Biomedical ethics frameworks and consultants have remained at the forefront of understanding and working through these dilemmas. The harm principle, for example, has provided excellent guidance for clinicians working with parents and understanding when the parent’s view of best interest allows for unacceptable harm. During our monthly meetings, PEAG members have reported continued struggles with the nuance of when to involve Child Protective Services and what qualifies as “significant risk of serious and imminent harm” particularly when evidence based medicine does not entirely apply to the individual patient in question, thus leaving prognoses and timelines uncertain.
In additions to parent refusals, many clinicians are also encountering increasing volume of parental requests for specific treatments that may or may not be evidence based. Many requests might be honored when considered neutral or having a possible benefit. Some may easily fall into a category of unquestionably harmful, allowing for no obligation on behalf of the clinician to comply. A grey zone may exist here as well, allowing for possible token of compromise with the family but leaving the clinician uncertain.
Further questions ask if we apply equity in many of these uncertain cases. Do we allow the rules to bend with some parents but not with others? What attention do we give to equity when considering these challenging questions? Are we consistently asking the challenging questions that may uncover implicit bias?
The session will consist of a multidisciplinary panel of national experts who will participate in a case-based discussion that covers advanced communication, trust building techniques, and how to approach situations when parents refuse recommended therapy and request non-standard therapy. Dr. Madrigal (current PEAG chair) will moderate discussion, using a mixture of (1) pre-prepared questions that are developed with Dr. Kingsley (co-chair) and the panelists, (2) live audience questions, and 3) a break out session, to generate conversation