From its inception, the law of informed consent has been based on two premises: first, that a patient has the right to receive sufficient information to make an informed choice about the treatment recommended; and second, that the patient may choose to accept or to decline the physician’s recommendation. The legitimacy of this second premise should be underscored because it is too often belied by the everyday language of medical practice. Getting a consent is medical jargon that implies that patient agreement is the only acceptable outcome. Indeed, the term informed consent itself suggests that patients are expected to agree to be treated rather than to decline treatment. Unless patients are viewed as having the right to say no, as well as yes, and even yes with conditions, much of the rationale for informed consent evaporates. Nonetheless, the medical profession’s reaction to patients who refuse treatment often has been less than optimal. The right to refuse treatment is frequently ignored in practice because it is inconsistent with the history and ethos of medicine (1,2). Physicians are trained to treat illness and to prolong life; situations in which they cannot do either—not because of limitations of knowledge or technology, but because patients or third parties reject their recommendations for care—evoke profound feelings of frustration and even anger. It would not be too much to suggest that these confrontations challenge an essential element of the medical identity. Physicians’ reactions to these situations are varied. Some will contend with patients over their refusal, while others, having assimilated a distorted version of patients’ right to refuse treatment, may too quickly abandon their patients to the consequences of their choices, thereby depriving them of the guidance for which patients traditionally have turned to their physicians. Regardless of the quality of care offered to patients or the degree of concern of those who treat them, some patients will have reasons of their own to decline treatment. Before considering how clinicians might respond to these situations, this chapter reviews the status of the law regarding treatment refusal, surveying a legal landscape that has seen dramatic changes in the last decade.
Historical perspective of informed consent in ethics and the law