Assent to medical research or treatment may be an intuitively attractive way to address the area between incapacity and capacity that might otherwise be subject to a best interests assessment. Assent has become a widely disseminated concept in law, research, and clinical ethics, but little conceptual work on assent has so far occurred. An exploration of use of assent in treatment and research in children and people with dementia suggests that at least five claims are made on behalf of assent. (...) Since at least some of these may lead to tensions with others, assent requires firmer conceptual underpinning. Whether assent remains primarily a local approach to research in children in the United States, where it appears to fit with legal background conditions, or develops its promise to overturn the dominant, binary, approach to (in)capacity will depend on the strength of future philosophical work to improve the theoretical foundations to assent. (shrink)

Key legislations in many countries emphasize the importance of involving children in decisions regarding their own health at a level commensurate with their age and capacities. Research is engaged in developing tools to assess capacity in children in order to facilitate their responsible involvement. These instruments, however, are usually based on the cognitive criteria for capacity assessment as defined by Appelbaum and Grisso and thus ill adapted to address the life-situation of children. The aim of this paper is to revisit (...) and critically reflect upon the current definitions of decision-making capacity. For this purpose, we propose to see capacity through the lens of essential contestability as it warns us against any reification of what it means to have capacity. Currently, capacity is often perceived of as a mental or cognitive ability which somehow resides within the person, obscuring the fact that capacity is not just an objective property which can be assessed, but always operates within a dominant cultural framework that “creates” that same capacity and defines the threshold between capable and incapable in a specific situation. Defining capacity as an essentially contested concept means using it in a questioning mode and giving space to alternative interpretations that might inform and advance the debate surrounding decision-making. (shrink)

Medical decision making by patients is respected as a lawful exercise of free will and agency unless patients are found to lack “competence.” Yet measures of competence in medical decision making typically assess only cognitive abilities. Emotionality is involved in decision making and may affect how far patients’ decisions to accept or refuse medical treatment embody free will. Moreover, neurodivergence, or atypical neurological makeup, is often diagnosed as neurodegeneration, neurodysfunction, neural damage, or neural difference and frequently leads to difficulties in (...) considering the emotional aspects of decisions that standard tests do not measure or disclose. Neurodiversity activists assert that their neural differences are not pathologies to be treated or cured but are alternative ways of being that should be accepted as neuroequal. Nevertheless, who may claim to be neurodiverse is uncertain. We focus on atypical emotionality to consider the limits of neurodiversity in relation to measures of competence, particularly in relation to end-of-life decision making. (shrink)

Competence is central to informed consent and, therefore, to medical practice. In this context, competence is regarded as synonymous with decision-making capacity. There is wide consensus that competence should be approached conceptually by identifying the abilities needed for decision-making capacity. Incompetence, then, is understood as a condition in which certain abilities relevant to decision-making capacity are lacking. This approach has been helpful both in theory and practice. There is, however, another approach to incompetence, namely to relate it to mental disorder. (...) This approach has been followed in recent research that has shown, for instance, that in anorexia nervosa a person's values may be changed, resulting in ‘pathological’ values. We explore some advantages and disadvantages of both abilities-based and pathology-based approaches. We argue that both can be valuable for further clarification of the concept of competence and improving clinical practice. Given the current predominance of the abilities-based approach, we make a plea for a greater focus on pathology-based practice and research. (shrink)