Approach to Patients and Families

John E. Mayer Jr., MD

Key Points

  • Discussions with patients and families should be grounded in the following four fundamental core ethical principles:
  1. respect for autonomy (respecting and supporting autonomous decisions),
  2. nonmaleficence (first, do no harm),
  3. beneficence (relieving, lessening, or preventing harm, providing benefits and balancing benefits against risks and costs), and
  4. justice (fairly distributing benefits, risks, and costs).
  • Informed consent is standard practice except in urgent/emergent situations.
  • Many families are not prepared for information about congenital heart disease; therefore, the following components of the discussion are critical in shaping perceptions and decisions:
    • the information given at diagnosis,
    • the manner in which it is presented, and
    • the understanding and interpretation of the patient and/or parent(s).
  • Informed consent is more than a requirement—informed consent can support “entrustment,” where families move from vulnerability toward “confidence that the surgeon would make good decisions on their behalf.”
  • Basic concepts discussed in this chapter include:
    • framing the conversation as an “odds discussion”
    • reviewing the natural history without treatment,
    • outlining treatment options and outcomes, and then
    • “quantitatively” describing procedure-specific and general risks whenever those data are known.
  • Families under stress are vulnerable to predictable decision biases (e.g., “prospect theory” and “diminishing sensitivity”). Therefore, it is important to communicate in a way that supports deliberate, data-informed decisions rather than an “I can fix it” mental model.

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