Medical Decision-Making and Minors: Issues of Consent and Assent
Kuther, Tara L., Adolescence
In recent years, the physician-patient relationship has transformed from one of paternalism into an egalitarian and participatory partnership in which patients and physicians work together to make healthcare decisions (Committee on Bioethics, 1995). Today there is general societal acceptance that "patients have a right to know about their health, to know about available diagnostic and treatment options and then" risks and probable benefits, and to choose among the alternatives" (Committee on Bioethics, 1995, p. 315). Informed consent is an essential part of the communication process between physicians and patients. The information provided by physicians about illness and treatment options is vital to patients' decision-making and influences their psychological well-being (Rushforth, 1999).
Although adults receive considerable encouragement to become active participants in healthcare decisions, children and adolescents often have little voice in decisions about their medical treatment (Kunin, 1997; Lidz et al., 1984). As minors, adolescents often are unable legally to provide informed consent and are granted limited access to confidential medical care. Confusion and mixed messages abound about the abilities and rights of adolescents. The present review examines the developmental literature on children and adolescents' capacities to make medical decisions that are informed, voluntary, and rational.
INFORMED CONSENT: THE CORNERSTONE OF HEALTHCARE
In its simplest form, informed consent is the treatment authorization given by a patient to a physician. Legally, it is an intentional authorization in that it must be given knowingly, rationally, with volition, and without coercion (Grisso & Vierling, 1978; King & Cross, 1989; Scott, 1992). By informed, it is meant that the decision must be based on knowledge of the situation and potential consequences. Consent must be voluntary; it must be volitional and not reflect mere acquiescence. Consent also must be rational, implying that it is rendered by an intellectually competent and mature individual.
Informed consent is more than a legality; it is a moral responsibility on the part of healthcare providers, based in the recognition of individual autonomy, dignity, and the capacity for self-determination (King & Cross, 1989; Kuther, 1999). Consent is not a single event or episode, but a complex process, one feature of the therapeutic alliance between physician and patient (Krener & Mancina, 1994). Both have roles and responsibilities in the consent process. Decision-making power is shared by physicians and patients, with them as partners (American Medical Association [AMA], 1992; Committee on Bioethics, 1995).
AMBIGUITIES IN CONSENT: MINORS
The process of informed consent becomes more complicated when considering minors because there is only limited direct application of the doctrine of informed consent in pediatrics (Committee on Bioethics, 1995). Informed consent only can be given by those with legal entitlement and decisional capacity, otherwise a parent or guardian must provide permission. The fundamental issue in informed consent for minors is a question of how decisions should be made for those who are not fully competent to decide for themselves (Krener & Mancina, 1994). Parents or guardians are entitled to provide permission because they have legal responsibility and, in the absence of abuse or neglect, are assumed to act in the best interests of the child. Part of why consent issues are so difficult with minors is that the best interests of the child are hard to define, and are often subjective. Additional issues include questions of how to define and assess decision-making capacity.
Minors and Consent: Legal Perspectives
In the U.S., state legislation requiring parental consent for medical treatment reflects the conception that minors (those under the age of 18) are incapable of understanding and making decisions about medical treatment (Melton, 1983). …