Lost decisional capacity – lost chance of Advance Care Planning?

Abstract

Comprehensive models of Advance Care Planning (ACP) have been discovered as a more meaningful and effective alternative to the classic advance directive (living will) [1, 2]. This continuity of a new model replacing the old one is already suggested by the linguistic anaphora (both terms begin with the word “advance”). In Switzerland as in Germany and other European countries, ACP projects are being implemented that focus on facilitating anticipated care and treatment decisions of persons who are willing and able to engage in such conversations. These are often elderly citizens, persons with chronic organ diseases or cancer, individuals with an elevated educational background, a firm rooting in the majority culture and a well-developed socio-economic situation. Strikingly, this development risks to neglect the vulnerable persons of society, the less educated, the cultural minorities, the poor, the lonely and, most importantly, those that have already lost their decision-making capacity. There seems to be a generally accepted assumption that it is too late for ACP once the person has already progressed into a state of decisional incapacity: lost capacity, lost chance for ACP. Yet, is this true? In this viewpoint, I intend to show that this assumption is wrong and that, in fact, we need to extend ACP to those individuals who have lost decision-making capacity [3]. In a first step, I will show that there is a huge and rising need for this kind of “ACP by proxy”. In a second step, I will sketch the concept of this form of ACP and uncover both the analogies and differences to ACP with fully autonomous persons. As a third step, I will present the multifaceted ethical justification of ACP that applies equally well to persons without decisional capacity. In the fourth and last step, I will outline an agenda of research and policy proj ects that should be addressed to fully develop ACP.