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Approach to Patients and Families
The diagnosis of heart disease in a child is among the most anxiety-producing circumstances for parents, and very few families are educationally prepared to understand the impact of congenital heart disease and its treatment on their children. Interactions between physicians and the parents of these children are understandably influenced by parental fears and concerns for both the immediate survival as well as the longer term consequences for intellectual and physical development. It is in this emotional context that congenital heart surgeons must interact with parents and/or older congenital heart disease patients for whom surgical interventions are being proposed.
At the most fundamental level, the relationship between a physician and patient (or patient family) is governed by a set of ethical principles , which include
- respect for autonomy (respecting and supporting autonomous decisions),
- nonmaleficence (first, do no harm),
- beneficence (relieving, lessening, or preventing harm, providing benefits and balancing benefits against risks and costs), and
- justice (fairly distributing benefits, risks, and costs).
The obligations to first do no harm and to relieve, lessen, or prevent harm come directly from the Hippocratic Oath that most medical students take as they receive their doctor of medicine degree. The just distribution of resources to patients is more complicated because of the presence of multiple principles and diverse conceptions of justice which contribute to ongoing controversies in this area and are thus beyond the scope of the present discussion. The principle of autonomy, or respect for persons, translates into the policy of obtaining informed consent prior to undertaking an invasive procedure, and it is now standard practice in all US institutions that informed consent is required prior to undertaking any invasive procedure, including surgery, except under extremely urgent/emergent conditions. This policy of informed consent has its basis in the legal cases dating from the 18th century in England in which it was stated that “a deviation from the practice ordinarily adhered to by surgeons-specifically the practice of obtaining consent from the patient before administering treatment-was the ground for imposing liability.” In the early 1900’s Justice Cardozo articulated the principle that “every human being of adult years and sound mind has a right to determine what shall be done with his body.”
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