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Abstract
Anorexia nervosa has many aspects that give rise to ethical questions such as unsatisfactory efficacy of available treatments, difficulties with determining decision-making capacity, and the use of coercion. To support ethical decision-making, this dissertation aimed at describing ethical concerns in anorexia nervosa, exploring harm reduction and end-of-life care as ways of dealing with them, and conceptualizing futility as one underlying normative concept.
Qualitative analysis of ethics consultations (chapter 8.1) identified as main ethical concern whether to accept a treatment refusal or coerce treatment although this might result in more harm than benefit. This conflict between the principles of respect for autonomy, beneficence, and non-maleficence was complicated by frequent uncertainty about respect for autonomy (e.g., dissent about decision-making capacity) and benef- icence (e.g., poor likelihood of achieving clinical remission with further treatment). In response to this ethical challenge, harm reduction approaches have been proposed. However, ethical analysis (chapter 8.2) and a case report (chapter 8.3) revealed that this is not sufficient as some patients are not willing or able to show the minimum co- operation necessary. Another option to care for persons with anorexia nervosa, end- of-life care, is controversial. A scoping review (chapter 8.4) found that the debate is complicated by uncertainty about morally relevant aspects such as decision-making capacity stemming from both lack of empirical evidence and open normative questions such as whether (and when) diagnosis-based ethico-legal exceptionalism can be ap- propriate. Also, conceptualisations of key terms such as futility are heterogenous, often not made explicit, value-laden, and sometimes even circular. Therefore, a conceptual- isation of futility adapted to mental healthcare was developed (chapter 8.5). In addition to its inherent normativity, futility is highly specific. Thus, healthcare professionals may cope with it by changing the intervention and/or reprioritizing goals of care. An example is prioritizing prevention of suffering over keeping the patient alive as in end-of-life care.
The debate on how to respond to ethical challenges posed by anorexia nervosa needs consented, coherent, and minimally value-laden terminology and answers to open normative questions. On a more abstract level, this debate exemplifies the relevance of uncertainty for medical decision-making, which has received little attention so far. Developing a guiding framework for incorporating uncertainty into ethical reasoning has the potential to improve not just care for persons with anorexia nervosa, but clinical ethics and healthcare in general.
