Autonomy is not respect for a patient’s wishes against good medical judgment. Consider the example of a patient with inoperable, advanced-stage cervical cancer who demands surgery and refuses radiation therapy. The physician’s ethical obligation is to seek the best for the patient’s survival (beneficence) and avoid the harm (nonmaleficence) of surgery, even if that is what the patient wishes. Physicians are not obligated to offer treatment that is of no benefit, and the patient has the right to refuse treatment that does not fit into her values. Thus, this patient could refuse treatment for her cervical cancer, but she does not have the right to be given any treatment she wishes, in this case a treatment that would cause harm and no benefit.
If the ability to make choices is diminished by extreme youth, mental processing difficulties, extreme medical illness, or loss of awareness, surrogate decision making may be required. In all circumstances, the surrogate must make every attempt to act as the patient would have acted (23). The hierarchy of surrogate decision makers is specified by statutory law in each state and differs slightly from state to state. For adults, the first surrogate decision maker in the hierarchy is usually a court-appointed guardian if one exists and second is a durable power of attorney for health care if it exists, followed by relatives by degree of presumed familiarity (e.g., spouse, adult children, parents). For lesbian couples this presents issues in some states and the creation of a durable power of attorney can address this issue proactively. Physicians should make sure their patients are aware of the need to have clear instructions about who they would want to speak for them if they are not able—in some cases it is not the person specified by the state guidelines. For example, elderly women may not want their elderly (and slightly senile) spouse making decisions and prefer a friend or children—and should have a durable power of attorney for health care that ensures that will be the case.
For children, parents are the surrogate decision makers, except in circumstances in which the decision is life threatening and might not be the choice a child would make later, when adult beliefs and values are formed. The classic example of this is the Jehovah’s Witness parents who refuse life-saving transfusions for their child (24). Although this case is the extreme, it illustrates that the basic principle outlined for surrogate decision making should apply to parents. Bias that inﬂuences decision making (in protection of parental social status, income, or systems of beliefs) needs to be considered by physicians because the potential conﬂict may lead parents to decisions that are not in the best interest of the child. If there is a conﬂicting bias that does not allow decisions to be made in the best interest of the child or that involves a medical threat to a child, legal action to establish guardianship (normally through a child protective agency by the courts) may be necessary. This action can destroy the patient (child)–physician relationship and the parent–physician relationship. It may affect the long-term health and well-being of the child, who must return to the care of the parents. Such decisions should be made only after all attempts to educate, clarify, and find alternatives are exhausted.
The legal age at which adolescents may make their own decisions regarding their health care varies by state (25). There is a growing trend to increase the participation of adolescents who are capable of decision making for their own health care. Because minors often have developed a value system and the capacity to make informed choices, their ability to be involved in decisions should be assessed individually rather than relying solely on the age criteria of the law and their parents’ views.