Ethical perspectives on decision-making capacity and consent for treatment and research

Decision-making capacity for treatment and research raises complex conceptual issues. Given the fact that both considerations of respect for patient autonomy and beneficence/harm prevention have moral relevance in many cases, in the practice of health care the need exists to balance both in a moral responsible way. The moral concept of (mental) capacity or decisional capacity has a role to play in this balancing process. The current dominant approach towards the conceptualization and assessment of decision-making capacity, which focuses on cognition and rationality, has some serious shortcomings. In order to compensate for these shortcomings of the dominant approach, a number of alternative approaches may be promising. A first alternative focuses on issues of emotion and narrative; a second on identity and identification, and a third on dialogue and deliberation. By paying attention to the way in which people interprete their world (not only by cognition, but also by emotion), and how they shape their lives by processes of identification and communication, a broader perspective on capacity assessment in health care can be developed. Above that, these alternative approaches are less focused on the assessment of (in)capacity and more on enabling a person to become more competent through a process of empowerment, participation, and shared decision-making.