Physicians' counseling parents of infants with treatable medical conditions should facilitate informed decision-making in infants’ best interests. HLHS and ELBW differ in pathophysiology and in treatments, but share similar outcomes (50% survival, 40% morbidity among survivors). Parents must choose between treatment and non-treatment, weighing risks of intervention against potential benefits. While treating neonatologists typically counsel ELBW parents, HLHS parents receive counseling from neonatologists, cardiologists, and surgeons. Parental autonomy may be affected by physicians’ unwillingness to present non-treatment options, or by differing specialists presenting conflicting opinions. Resuscitation of ELBW infants and surgery for HLHS typically appear to be immediate, heroic interventions, the only chance for survival. However, for HLHS surgery, parents consent to a defined series of operations, while parents typically assent to ELBW treatment, uncertain if later complications will require repeated invasive interventions. Although both conditions are fatal without intervention, ELBW deaths occur within hours to days after treatment, while post-operative HLHS deaths occur over days to years. Physicians counseling parents should present overall mortality statistics, and also differences in timing of death among non-survivors. When discussing possible complications of treatment, physicians should detail pain and suffering expected during intensive care as well as expected limitations in survivors' quality of life, as both likely affect perceived benefits and burdens of intervention. Counseling appropriately differs for medical vs surgical interventions, but may have concomitant effects on fairness, justice, and informed consent as life-support decisions are being made for newborns with fatal diagnoses.
Learning Objectives: At the conclusion of the session participants will be aware of some of the ethical dilemmas facing physicians who counsel families with critically ill infants. Participants will also observe how routine counseling may impinge on autonomous parental decision-making.
Keywords: Decision-Making, Counseling
Presenting author's disclosure statement:
Organization/institution whose products or services will be discussed: None
I do not have any significant financial interest/arrangement or affiliation with any organization/institution whose products or services are being discussed in this session.