In theory, a competent patient may refuse any and all treatments, even those that sustain life. The problem with this theory, confidently and frequently asserted, is that the circumstances of real patients may so confound us with their complexity as to shake our confident assumptions to their core.For instance, it is not the case that one may always and easily know which patients are competent. Indeed, evaluation of decision-making capacity is notoriously difficult. Not only may reasonable and experienced evaluators, say (...) a judge and a psychiatrist, disagree, but also a person's capacity may change from hour to hour and may extend to some decisions yet not to others. And yet it is on this subtle art of capacity evaluation that life and death decisions often turn, especially when patients decline life-sustaining treatment.An evaluation of capacity may consider the impact of serious medical or psychiatric illness, as well as the patient's life circumstances. (shrink)

Competent patients’ refusals of nursing care do not yet have the legal or ethical standing of refusals of life-sustaining medical therapies such as mechanical ventilation or blood products. The case of a woman who refused turning and incontinence management owing to pain prompted us to examine these situations. We noted several special features: lack of paradigm cases, social taboo around unmanaged incontinence, the distinction between ordinary versus extraordinary care, and the moral distress experienced by nurses. We examined this case on (...) the merits and limitations of five well-known ethical positions: pure autonomy, conscientious objection, paternalism, communitarianism, and feminism. We found each lacking and argue for a ‘negotiated reliance’ response where nurses and others tread as lightly as possible on the patient’s autonomy while negotiating a compromise, but are obligated to match the patient’s sacrifice by extending themselves beyond their usual professional practice. (shrink)