Adolescents, Consent and Refusal of Treatment

What is Informed Consent?

The concept of informed consent in the practice of medicine means that the patient, not the physician or other health care provider, makes decisions about how treatment will proceed. It is, after all, the patient's body, not the health care provider's, and the patient is the one who has to live with the consequences of medical interventions.

Informed consent usually involves questions of values: which risks among alternative treatments a particular person is more willing to accept. For example, two women of the same age with identical diagnoses of breast cancer might select very different therapies. A professional tennis player might elect the least mutilating form of therapy so she can continue her career. She may well realize that she has a higher theoretical risk of relapse than if she made another choice, but she is most interested in her present situation. The mother of an infant and a 4-year-old might elect to have a treatment that is more disfiguring but which she believes will allow her to live long enough to see her children grow into adulthood. These are value choices that no physician can make for a patient.

What are the Elements of Informed Consent?

The first aspect of informed consent is an explanation to the patient of what will happen: “The incision will be…” and “You should expect to be in the hospital for 4 days” and “After you are discharged, you will need to have physical therapy.” The physician does not have to go into great detail, but the patient must understand what he or she is “getting into” in terms of time, discomfort, and, in some cases, financial obligation.

The next element is that of explanation of the anticipated material risks. If the likelihood of something occurring is remote but the consequences are severe, the patient has the right to know about it. For example, if a remote risk is death, blindness, or paralysis, the patient should be told. If something is quite likely to happen, although it may not be very serious from the physician's perspective, the patient also has the right to know. If, for example, a medication is likely to cause the patient to itch, the patient (who may not be able to tolerate itching and who would rather live with pain) has the right to know that, as well.

Third, the benefits of the proposed intervention must be made clear. Of course, if it will cure the problem, the patient should know that. An appendectomy absolutely cures appendicitis. In more complex situations, however, if the therapy can at best ameliorate a condition or prolong life without enhancing the patient's ability to interact with his or her environment, the concept of “benefit” may not be so clear.

Reasonable alternatives, those considered “mainstream medicine” even if the particular physician prefers another treatment, is a fourth element that must be explained to the patient. If the medication causes itching and the patient chooses not to take it, another medication that does not cause itching but may be marginally less effective should be prescribed. Unless the patient knows about it, however, he or she has no information on which to make the choice. In many instances, “doing nothing” is a perfectly acceptable alternative and must be discussed with the patient. In self-limiting diseases, even if treatment could shorten the intensity or duration, the patient may prefer just to leave things alone.

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