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

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

Ethical deliberations about involuntary treatment: interviews with Swedish psychiatrists

Background: Involuntary treatment is a key issue in healthcare ethics. In this study, ethical issues relating to involuntary psychiatric treatment are investigated through interviews with Swedish psychiatrists. Methods: In-depth interviews were conducted with eight Swedish psychiatrists, focusing on their experiences of and views on compulsory treatment. In relation to this, issues about patient autonomy were also discussed. The interviews were analysed using a descriptive qualitative approach. Results: The answers focus on two main aspects of compulsory treatment. Firstly, deliberations about when and why it was justifiable to make a decision on involuntary treatment in a specific case. Here the cons and pros of ordering compulsory treatment were discussed, with particular emphasis on the consequences of providing treatment vs. refraining from ordering treatment. Secondly, a number of issues relating to background factors affecting decisions for or against involuntary treatment were also discussed. These included issues about the Swedish Mental Care Act, healthcare organisation and the care environment. Conclusions: Involuntary treatment was generally seen as an unwanted exception to standard care. The respondents’ judgments about involuntary treatment were typically in line with Swedish law on the subject. However, it was also argued that the law leaves room for individual judgments when making decisions about involuntary treatment. Much of the reasoning focused on the consequences of ordering involuntary treatment, where risk of harm to the therapeutic alliance was weighed against the assumed good consequences of ensuring that patients received needed treatment. Cases concerning suicidal patients and psychotic patients who did not realise their need for care were typically held as paradigmatic examples of justified involuntary care. However, there was an ambivalence regarding the issue of suicide as it was also argued that risk of suicide in itself might not be sufficient for justified involuntary care. It was moreover argued that organisational factors sometimes led to decisions about compulsory treatment that could have been avoided, given a more patient-oriented healthcare organisation. Electronic supplementary material The online version of this article (doi:10.1186/s12910-015-0029-5) contains supplementary material, which is available to authorized users

Skepticism towards the Swedish vision zero for suicide: interviews with 12 psychiatrists

Abstract Background The main causes of suicide and how suicide could and should be prevented are ongoing controversies in the scientific literature as well as in public media. In the bill on public health from 2008 (Prop 2007/08:110), the Swedish Parliament adopted an overarching “Vision Zero for Suicide” (VZ) and nine strategies for suicide prevention. However, how the VZ should be interpreted in healthcare is unclear. The VZ has been criticized both from a philosophical perspective and against the background of clinical experience and alleged empirical claims regarding the consequences of regulating suicide prevention. This study is part of a larger research project in medical ethics with the overarching aim to explore whether the VZ is ethically justifiable. The aim is to enrich the normative discussion by investigating empirically how the VZ is perceived in healthcare. Methods Interviews based on a semi-structured interview guide were performed with 12 Swedish psychiatrists. The interviews were analysed with descriptive qualitative content analysis aiming for identifying perceptions of the Vision Zero for Suicide as well as arguments for and against it. Results Though most of the participants mentioned at least some potential benefit of the Vision Zero for Suicide, the overall impression was a predominant skepticism. Some participants focused on why they consider the VZ to be unachievable, while others focused more on its potential consequences and normative implications. Conclusions The VZ was perceived to be impossible to realize, nonconstructive or potentially counterproductive, and undesirable because of potential conflicts with other values and interests of patients as well as the general public. There were also important notions of the VZ having negative consequences for the working conditions of psychiatrists in Sweden, in increasing their work-related anxiety and thwarting the patient-physician relationship

European Association for Palliative Care (EAPC) framework for palliative sedation: an ethical discussion

<p>Abstract</p> <p>Background</p> <p>The aim of this paper is to critically discuss some of the ethically controversial issues regarding continuous deep palliative sedation at the end of life that are addressed in the EAPC recommended framework for the use of sedation in palliative care.</p> <p>Discussion</p> <p>We argue that the EAPC framework would have benefited from taking a clearer stand on the ethically controversial issues regarding intolerable suffering and refractory symptoms and regarding the relation between continuous deep palliative sedation at the end of life and euthanasia. It is unclear what constitutes refractory symptoms and what the relationship is between refractory symptoms and intolerable suffering, which in turn makes it difficult to determine what are necessary and sufficient criteria for palliative sedation at the end of life, and why. As regards the difference between palliative sedation at the end of life and so-called slow euthanasia, the rationale behind stressing the difference is insufficiently demonstrated, e.g. due to an overlooked ambiguity in the concept of intention. It is therefore unclear when palliative sedation at the end of life amounts to abuse and why.</p> <p>Conclusions</p> <p>The EAPC framework would have benefited from taking a clearer stand on some ethically controversial issues regarding intolerable suffering and refractory symptoms and regarding the relation between continuous deep palliative sedation at the end of life and euthanasia. In this text, we identify and discuss these issues in the hope that an ensuing discussion will clarify the EAPC's standpoint.</p