The term “exceptionalism” was introduced into health care in 1991 when Bayer described “HIV exceptionalism” as the policy of treating the human immunodeficiency virus different from other infectious diseases, particularly other sexually transmitted diseases. It was reflected in the following practices: pre- and post-HIV test counseling, the development of specific separate consent forms for HIV testing, and stringent requirements for confidentiality of HIV test results. The justification for these practices was the belief that testing was essential for prevention and that (...) patients might not seek HIV testing if confidentiality were not guaranteed. Confidentiality was believed to be particularly important given the degree of discrimination and stigmatization associated with the illness. Anonymous testing was a further step in ensuring strict confidentiality, even though such a practice prevented public officials from contacting partners and others who were at risk. (shrink)

Objectives: To summarise the types of case brought to the Clinical Ethics Committee of the National Hospital of Norway from 1996 to 2002 and to describe and discuss to what extent issues of information/communication have been involved in the ethical problems. Design: Systematic review of case reports. Findings: Of the 31 case discussions, (20 prospective, 11 retrospective), 19 cases concerned treatment of children. Twenty cases concerned ethical problems related to withholding/withdrawing of treatment. In 25 cases aspects of information/communication were involved (...) in the ethical problem, either explicitly (n = 3) or implicitly (n = 22). Conclusion: Problems related to information/communication may underlie a classic ethical problem. Identification of these “hidden” problems may be important for the analysis, and hence, the solution to the ethical dilemma. (shrink)

The bioethics literature has paid little attention to matters of informed reproductive decision-making among women of childbearing age who have chronic kidney disease (CKD), including women who are on dialysis or women who have had a kidney transplant. Women with CKD receive inconsistent and, sometimes, inadequate reproductive counseling, particularly with respect to information about pursuing pregnancy. We identify four factors that might contribute to inadequate and inconsistent reproductive counseling. We argue that women with CKD should receive comprehensive reproductive counseling, including (...) information about the possibility of pursuing pregnancy, and that more rigorous research on pregnancy in women with CKD, including women on dialysis or who have received a kidney transplant, is warranted to improve informed reproductive decision making in this population. (shrink)

What is informed consent in medicine? For more than a generation, this deceptively simple question has vexed the law, discomfited medicine, and generated much inspired, provocative, and even contentious commentary.The question has also spawned several lawsuits. On one side stand patients who claim that, at the time of consent, they were ignorant of a particular risk; who state that, with more or different information, they would have chosen a different treatment; and who argue that, because of an adverse outcome, they (...) now deserve remuneration. On the other side, doctors uneasily watch the lengthening list of suits. Some, troubled by the law's expectations, have reacted by variously describing informed consent as a myth, a fiction, an unattainable goal, or a snare to entrap physicians. They point to the legal commentary condemning informed consent law as ill-defined, diffuse, and fraught with inconsistency, hazy at its best and virtually indecipherable to physicians at its worst: and lacking a fair standard to determine when a patient has sufficient knowledge to give effective consent. (shrink)

Objective: Even when critically ill patients are almost certain to die from their illnesses, there is generally an element of prognostic uncertainty. Little is known about how physicians handle this uncertainty in conversations with surrogate decision makers. We sought to evaluate whether and how physicians discuss prognostic uncertainty with surrogate decision makers of patients who are highly likely, but not certain, to die. Design: We audiotaped and transcribed discussions between clinicians and surrogate decision makers at two major California teaching hospitals (...) from 2006 through 2008. Physicians completed a questionnaire addressing their prognostic estimates for patients' survival to hospital discharge. Participants: We included physicians and surrogates of 12 incapacitated, critically ill patients. Measurements: We analyzed transcripts of discussions in which physicians' estimates of patients' chances of hospital survival were 1% to 5%; we coded whether physicians disclosed the prognostic uncertainty and, if so, how they conveyed that death was highly likely but not certain. Results: Physicians' estimates of short-term survival were 1% to 5% for 12 of the 70 patients enrolled in the original study. In 8 of 12 cases, physicians conveyed prognostic uncertainty by using probabilistic language or by an explicit mention of uncertainty. In four cases, physicians made at least one statement that either implied or was ambiguous about whether death was certain. Conclusion: We observed variability in how physicians handle prognostic uncertainty in their discussions with surrogates of patients who are highly likely, but not certain, to die, including some circumstances in which physicians stated or implied that death was certain. (shrink)