Informed consent and advance directives

Contrary to popular belief, a patient's signature on a piece of paper does not constitute informed consent. This article describes the ethical framework of consent in the context of the larger process of informed decision making. The elements of informed consent are examined in practical terms. Common pitfalls are addressed, with strategies to help anticipate and resolve possible dilemmas. These important tools are integral to all levels of medical decision making, including those at the end of life.     

Autonomy and negatively informed consent

The requirement of informed consent (IC) to medical treatments is almost invariably justified with appeal to patient autonomy. Indeed, it is common to assume that there is a conceptual link between the principle of respect for autonomy and the requirement of IC, as in the influential work of Beauchamp and Childress. In this paper I will argue that the possible relation between the norm of respecting (or promoting) patient autonomy and IC is much weaker than conventionally conceived. One consequence of this is that it is possible to exercise your autonomy without having the amount of and the kind of information that are assumed in the standard requirement of IC to medical treatments. In particular, I will argue that with a plausible conception of patient autonomy, the respect for and the promotion of patient autonomy are in certain circumstances better protected by giving patients the right to give their negatively informed consent to medical treatments.     

Physicians' attitudes on advance directives

Advance directives provide means for competent individuals to influence treatment decisions in the event of serious illness and subsequent loss of competence, the "living will" being the best known example. Physicians in Arkansas who were identified to be currently engaged in general practice, family medicine, or internal medicine, including its subspecialities (N = 1293), were surveyed to assess attitudes toward and experiences with advance directives. Almost 80% of all respondents expressed a positive attitude and fewer than 2% expressed a negative attitude toward such documents. A majority (55.9%) had actual experience with the instruments in their practices, and 83.5% of these physicians said that their attitude had become more positive as a result of their experience. More frequent employment of advance directives in critical situations was associated with more positive attitudes and experiences. Most of the benefits claimed for advance directives--improved communication and trust, easier and more confident treatment decision, less stress and guilt, and promotion of patient autonomy--were substantiated by the results.     

Family physicians' attitudes toward advance directives.

OBJECTIVE: To examine the attitudes toward, the experience with and the knowledge of advance directives of family physicians in Ontario. DESIGN: Cross-sectional survey. PARTICIPANTS: A questionnaire was mailed to 1000 family physicians, representing a random sample of one-third of the active members of the Ontario College of Family Physicians; 643 (64%) responded. RESULTS: In all, 86% of the physicians favoured the use of advance directives, but only 19% had ever discussed them with more than 10 patients. Most of the physicians agreed with statements supporting the use of advance directives and disagreed with statements opposing their use. Of the respondents 80% reported that they had never used a directive in managing an incompetent patient. Of the physicians who responded that they had such experience, over half said that they had not always followed the directions contained in the directive. The proportions of physicians who responded that certain patient groups should be offered the opportunity to complete an advance directive were 96% for terminally ill patients, 95% for chronically ill patients, 85% for people with human immunodeficiency virus infection, 77% for people over 65 years of age, 43% for all adults, 40% for people admitted to hospital on an elective basis and 33% for people admitted on an emergency basis. The proportions of physicians who felt that the following strategies would encourage them to offer advance directives to their patients were 92% for public education, 90% for professional education, 89% for legislation protecting physicians against liability when following a directive, 80% for legislation supporting the use of directives, 79% for hospital policy supporting the use of directives, 73% for reimbursement for time spent discussing directives with patients and 64% for hospital policy requiring that all patients be routinely offered the opportunity to complete a directive at the time of admission. CONCLUSIONS: Family physicians favour advance directives but use them infrequently. Most physicians support offering them to terminally or chronically ill patients but not to all patients at the time of admission to hospital. Although governments emphasize legislation, most physicians believe that public and professional education programs would be at least as likely as legislation to encourage them to offer advance directives to their patients.     

Family consent, communication, and advance directives for cancer disclosure: a Japanese case and discussion.

The dilemma of whether and how to disclose a diagnosis of cancer or of any other terminal illness continues to be a subject of worldwide interest. We present the case of a 62-year-old Japanese woman afflicted with advanced gall bladder cancer who had previously expressed a preference not to be told a diagnosis of cancer. The treating physician revealed the diagnosis to the family first, and then told the patient: "You don't have any cancer yet, but if we don't treat you, it will progress to a cancer". In our analysis, we examine the role of family consent, communication patterns (including ambiguous disclosure), and advance directives for cancer disclosure in Japan. Finally, we explore the implications for Edmund Pellegrino's proposal of "something close to autonomy" as a universal good.     

Comparison of patients' and health care professionals' attitudes towards advance directives.

OBJECTIVES: This study was designed to identify and compare the attitudes of patients and health care professionals towards advance directives. Advance directives promote recognition of the patient's autonomy, letting the individual exercise a certain measure of control over life-sustaining care and treatment in the eventuality of becoming incompetent. DESIGN: Attitudes to advance directives were evaluated using a 44-item self-reported questionnaire. It yields an overall score as well as five factor scores: autonomy, beneficence, justice, external norms, and the affective dimension. SETTING: Health care institutions in the province of Québec, Canada. Survey sample: The sampling consisted of 921 subjects: 123 patients, 167 physicians, 340 nurses and 291 administrators of health care institutions. RESULTS: Although the general attitude of each population was favourable to the expression of autonomy, multivariate analysis of variance (MANOVA) indicated that physicians attached less importance to this subscale than did other populations (p < .001). Above all, they favoured legal external norms and beneficence. Physicians and administrators also attached less importance to the affective dimension than did patients and nurses. Specifically, physicians' attitudes towards advance directives were shown to be less positive than patients' attitudes. CONCLUSION: More attention should be given to the importance of adequately informing patients about advance directives because they may not represent an adequate means for patients to assert their autonomy.     

Canadian outpatients and advance directives: poor knowledge and little experience but positive attitudes.

OBJECTIVE: To examine the knowledge of, previous experience with, attitudes toward and perceived barriers to completing advance directives among outpatients at two general medicine clinics. DESIGN: Cross-sectional questionnaire administered in face-to-face structured interviews. SETTING: General internal-medicine outpatient clinics at a university teaching hospital. PATIENTS: One hundred and five adult outpatients who could communicate in spoken English and who consented to be interviewed. RESULTS: Of 167 patients approached, 58 were excluded because they could not communicate in spoken English, and 4 refused to participate. Of the remaining 105 patients, 17 (16%) knew about living wills, 12 (11%) about durable powers of attorney for health care and 4 (4%) about advance directives. Twenty-three (22%) had thought about their preferences for life-sustaining treatment, 20 (19%) had discussed them, none had written them down, and 45 (43%) had thought about choosing a proxy. Sixty-one (58%) wanted to think about their preferences for treatment, 65 (62%) wanted to discuss them, 32 (30%) wanted to write them down, and 80 (76%) wanted to choose a proxy. The perceived barriers to completing an advance directive were inability to write, the belief that an advance directive was unnecessary, a fatalistic attitude, previous discussion of preferences, a desire to leave the decision to doctors, uncertainty about preferences, a desire to discuss preferences rather than document them, a desire to wait until the situation arose, a desire to write down preferences in the future and a desire to avoid thinking about preferences or advance directives. Respondents with more knowledge of life-sustaining treatments were more likely to want to complete an advance directive. CONCLUSIONS: Outpatients have positive attitudes toward advance directives, but their knowledge and experience are limited. These data underscore the need for patient education and for policies to eliminate the barriers to completing advance directives that patients face.     

Autonomy, consent, and limiting healthcare costs

While protection of autonomy is crucial to the practice of medicine, there is the persistent risk of a disconnect between the notion of self-determination and the need for a socially responsible medical system. An example of unbridled autonomy is the preferential use of costly medications without an appreciation of the impact of using these more expensive drugs on the resource pool of others. In the USA, costly medications of questionable incremental benefit are frequently prescribed with the complicity of both doctors and patients. Limiting self-determination in medication choices via an appreciation of the principle of justice reaches a better moral balance, while at the same time acknowledging the goals of doing good and avoiding harm in patient care.