Autonomy and decision-making capacity: studies on the ethics of self-determination in healthcare

Sammanfattning: The thesis discusses the concepts of autonomy and decision-making capacity and their normative relevance in healthcare. It is based on five studies. The first study discusses autonomy and the ethics of compulsory treatment in psychiatry. Different lines of reasoning regarding the justification of compulsory treatment are discussed. It is argued that autonomous healthcare refusals should be respected in psychiatry, just as in physical care. When a patient refuses care but is unable to make an autonomous treatment decision, treatment should be given if this is in the patient’s presumed best interests. It is argued that non-competent persons may also have reasons, rooted in deeply set and authentic values, that should be taken into account when making treatment decisions. However, the concept of authenticity is problematic and its normative relevance is further discussed in the following studies. The second study discusses the normative implications of conceiving of autonomy as a value to promote or protect in healthcare, focusing on situations where promotion of autonomy clashes with respect for patients’ choices. It is argued that if autonomy is valuable, then paternalism for the sake of autonomy can be justified in principle. However, on a policy level autonomy is best promoted by respect for autonomous decisions, as policies allowing for paternalism for the sake of autonomy may become self-defeating. The third study discusses the implications of conceiving of autonomy as a value in end-of-life care. Respect for autonomy is typically considered a key reason for the legalisation of euthanasia and physician-assisted suicide. However, in recent bioethical debate it has been argued that if autonomy is valuable, these practices should not be accepted. The underlying rationale is that euthanasia and assisted suicide are detrimental to autonomy. The article discusses the argument from the point of view of different ideas of autonomy’s value and maintains that the argument is untenable. The fourth study discusses the concept of authenticity, understood as the autonomy of personal preferences, focusing on the question of whether lack of authenticity in certain cases may justify overriding a patient’s treatment refusal. The paper discusses different notions of authenticity that have been proposed in bioethical debate and concludes that none of them seems to be both a reasonable account of authenticity and provide action-guidance in healthcare. The fifth study is an interview study with Swedish psychiatrists on ethical issues relating to decision-making capacity in psychiatric care. Different ideas and notions of decision-making capacity were raised in the interviews, but there was no consensus on the concept. Decision-making capacity was rarely brought up directly as relevant to decisions about compulsory psychiatric treatment. In line with Swedish law, such decisions were primarily swayed by the patients’ perceived need of care and risk of self-harm. Ethical deliberations typically focused on consequences related to treatment outcomes and maintaining patients’ trust in psychiatry in the long term.