Ethical problems derive from value differences amongpatients, families, and clinicians about choices and options in the provision of health care. Resolving these value differences involves several important ethical principles. Autonomy, which is based on the principle of respect for persons, means that competent adult patients can make choices about health care that they perceive to be in their best interests, after being appropriately informed about their particular health condition and the risks and benefits of alternatives of diagnostic tests and treatments. Paternalism challenges the principle of autonomy and involves the clinician deciding what is best for the patient, based on how much information is provided. Paternalism, under certain circumstances (e.g., when a patient has a life-threatening medical condition or a significant psychiatric disorder and is threatening self or others), may be more appropriate than autonomy. Weighing the values of autonomy and paternalism can challenge the clinician.
Other important ethical principles are those of beneficence (doing good), nonmaleficence (doing no harm or as little harm as possible), and justice (the values involved in the equality of the distribution of goods, services, benefits, and burdens to the individual, family, or society). End-of-life decision making must address quality of life and suffering in the provision of palliative and hospice care (see Chapter 4).
ETHICAL PRINCIPLES RELATED TO INFANTS, CHILDREN, AND ADOLESCENTS
Children vary from being totally dependent on parents or guardians to meet their health care needs to being more independent. Infants and young children do not have the capacity for making medical decisions. Paternalism by parents and pediatricians in these circumstances is appropriate. Adolescents (<18 years of age), if competent, have the legal right to make medical decisions for themselves. Children 8 to 9 years old can understand how the body works and the meaning of certain procedures; by age 14 to 15, young adolescents may be considered autonomous through the process of being designated a mature or emancipated minor or by having certain medical conditions. It is ethical for pediatricians to involve children in the decision-making process with information appropriate to their capacity to understand. The process of obtaining the assent of a child is consistent with this goal.
The principle of shared decision making is appropriate, but the process may be limited because of issues of confidentiality in the provision of medical care. A parent’s concern about the side effects of immunization raises a conflict between the need to protect and support the health of the individual and the public with the rights of the individual and involves ethical issues of distributive justice in regard to the costs and distribution of the vaccinations and responsibility for side effects.
All competent patients of an age defined legally by each state (usually ≥18 years of age) are considered autonomous with regard to their health decisions. To have the capacity to decide, patients must meet the following requirements:
Understand the nature of the medical interventions and procedures, understand the risks and benefits of these interventions, and be able to communicate their decision.
Reason, deliberate, and weigh the risks and benefits using their understanding about the implications of the decision on their own welfare.
Apply a set of personal values to the decision-makingprocess and show an awareness of the possible conflicts ordifferences in values as applied to the decisions to be made.
These requirements need to be placed within the context of medical care and applied to each case with its unique characteristics. Most young children are not able to meet the requirementsfor competency and need others, usually the parent, to makedecisions for them. Legally parents are given great discretion inmaking decisions for their children. This discretion is legally limited when there is child abuse and neglect, which triggers a further legal process in determining the best interests of the child.
It is important to become familiar with state law becausestate law, not federal law, determines when an adolescent can consent to medical care and when parents may access confidential adolescent medical information. The Health Insurance Portability and Accountability Act (HIPAA) of 1996,which became effective in 2003, requires a minimal standardof confidentiality protection. The law confers less confidentiality protection to minors than to adults. It is the pediatrician’sresponsibility to inform minors of their confidentiality rightsand help them exercise these rights under the HIPAA regulations.