Some experts have argued that patients facing certain types of choices should not be told whether their risk is above or below average, because this information may trigger a bias (Fagerlin et al. 2007). But careful consideration shows that the comparative risk heuristic can usefully guide decisions and improve their quality or rationality. Building on an earlier paper of mine (Schwartz 2009), I will argue here that doctors and decision aids should provide comparative risk information to patients, even while further (...) research is conducted. (shrink)

This paper explores the value of respect for personal autonomy in relation to clearly immoral and irrational acts committed freely and intentionally by competent people. Following Berlin's distinction between two kinds of liberty and Darwall's two kinds of respect, it is argued that coercive suppression of nonautonomous, irrational, and self-harming acts of competent persons is offensive to their human dignity, but not disrespectful of personal autonomy. Irrational and immoral choices made by competent people may claim only the negative liberty to (...) be left alone. Lives disposed to autonomy are worthy of solidarity and active support in addition to the right of free choice and action. Autonomous premeditated desires (distinguished from mere consent) may embody transcendental choices, which transcend consideration of physical and psychological well-being. Choices made by incompetent persons (e.g., children and the mentally disabled) are not related to autonomy, but to self-directedness. The value of human dignity confers protection to self-directedness, but not at the expense of other vital interests. (shrink)

Our decision-making is often subject to framing effects: alternative but equally informative descriptions of the same options elicit different choices. When a decision-maker is vulnerable to framing, she may consent under one description of the act, which suggests that she has waived her right, yet be disposed to dissent under an equally informative description of the act, which suggests that she has not waived her right. I argue that in such a case the decision-maker’s consent is simply irrelevant to the (...) permissibility of proceeding. I then consider two alternative views. According to the first, people susceptible to framing are able to give valid consent so long as they are sufficiently informed. This suggestion, I argue, maintains an overly narrow focus on mere quantity of information to the exclusion of other choice-affecting factors. A second response, which appeals to hypothetical consent, is likewise of little use in resolving the moral problem posed by framing effects. I conclude that if susceptibility to framing undermines the validity of consent, we may have good reason to reconsider whether consent has the rights-waiving function commonly attributed to it. (shrink)

This paper addresses whether universal, general education programs are enough to satisfy basic criteria of human rights, or whether comprehensive family planning programs, in conjunction with universal education programs, might also be morally required. Even before the Reagan administration instituted the ‘global gag rule’ at the 1984 conference in Mexico City, prohibiting funding to nongovernmental organizations that included providing information about abortion as a possible method of family planning, the moral acceptability of family planning programs has been called into question. (...) This paper makes a moral argument for family planning by appealing to both data and to theory: data about the efficacy of universal and comprehensive family planning education programs at reducing fertility and infant mortality, and theory about what is required for the establishment of autonomy. It reasons that universal educational programs are insufficient for the promotion of autonomy, and therefore argues on substantive autonomy grounds for comprehensive family planning programs in addition to universal education programs. (shrink)

In patient-centred care, shared decision-making is advocated as the preferred form of medical decision-making. Shared decision-making is supported with reference to patient autonomy without abandoning the patient or giving up the possibility of influencing how the patient is benefited. It is, however, not transparent how shared decision-making is related to autonomy and, in effect, what support autonomy can give shared decision-making. In the article, different forms of shared decision-making are analysed in relation to five different aspects of autonomy: (1) self-realisation; (...) (2) preference satisfaction; (3) self-direction; (4) binary autonomy of the person; (5) gradual autonomy of the person. It is argued that both individually and jointly these aspects will support the models called shared rational deliberative patient choice and joint decision as the preferred versions from an autonomy perspective. Acknowledging that both of these models may fail, the professionally driven best interest compromise model is held out as a satisfactory second-best choice. (shrink)

Background: Obtaining patients’ informed consent is an ethical and legal obligation in healthcare practice. Whilst the law provides prescriptive rules and guidelines, ethical theories of autonomy provide moral foundations. Models of practice of consent, have been developed in the bioethical literature to assist in understanding and integrating the ethical theory of autonomy and legal obligations into the clinical process of obtaining a patient’s informed consent to treatment.Aims: To review four models of consent and analyse the way each model incorporates the (...) ethical meaning of autonomy and how, as a consequence, they might change the actual communicative process of obtaining informed consent within clinical contexts.Methods: An iceberg framework of consent is used to conceptualise how ethical theories of autonomy are positioned and underpin the above surface, and visible clinical communication, including associated legal guidelines and ethical rules. Each model of consent is critically reviewed from the perspective of how it might shape the process of informed consent.Results and discussion: All four models would alter the process of obtaining consent. Two models provide structure and guidelines for the content and timing of obtaining patients’ consent. The two other models rely on an attitudinal shift in clinicians. They provide ideas for consent by focusing on underlying values, attitudes and meaning associated with the ethical meaning of autonomy.Conclusions: The paper concludes that models of practice that explicitly incorporate the underlying ethical meaning of autonomy as their basis, provide less prescriptive, but more theoretically rich guidance for healthcare communicative practices. (shrink)

Entwhistle and Watt (2013) make an important contribution to the person-centred view of health care by reframing past thinking on the subject in terms of the capability approach. Past thinking about person-centred care employs a range of normative values that are arguably supportive of the concept of a person. But ironically these values are not clearly grounded in any account of what the person is. Thus, it is not clear what anchors these values and so how they are to be (...) interpreted. (shrink)

People who are unable to make decisions about participating in research rely on proxies to make a decision based on their wishes and preferences. However, patients rarely discuss their preferences about research and proxies find it challenging to determine what their wishes would be. While the process of informed consent has traditionally been the focus of research to improve consent decisions, the more conceptually complex area of what constitutes ‘good’ proxy decision-making for research has remained unexplored. Interventions are needed to (...) improve and support proxy decision-making for research but are hampered by a lack of understanding about what constitutes decision quality in this context. A global increase in conditions associated with cognitive impairment such as dementia has led to an urgent need for more research into these conditions. The COVID-19 pandemic and subsequent necessity to conduct research with large numbers of critically ill patients has made this need even more pressing. Much of the empirical research centres on the desire to improve decision accuracy, despite growing evidence that authenticity is more reflective of the aim of proxy decisions and concerns about the methodological flaws in authenticity-focused studies. Such studies also fail to take account of the impact of decision-making on proxies, or the considerable body of research on improving the quality of healthcare decisions. This paper reports a concept synthesis of the literature that was conducted to develop the first conceptualisation of ‘good’ proxy decisions about research participation. Elements of decision quality were identified across three stages of decision-making: proxy preparedness for decision-making which includes knowledge and understanding, and values clarification and preference elicitation; the role of uncertainty, decisional conflict, satisfaction and regret in the decision-making process; and preference linked outcomes and their effect. This conceptualisation provides an essential first step towards the future development of interventions to enhance the quality of proxy decision-making and ensure proxy decisions represent patients’ values and preferences. (shrink)

The principle of informed consent obligates physicians to explain possible side effects when prescribing medications. This disclosure may itself induce adverse effects through expectancy mechanisms known as nocebo effects, contradicting the principle of nonmaleficence. Rigorous research suggests that providing patients with a detailed enumeration of every possible adverse event—especially subjective self-appraised symptoms—can actually increase side effects. Describing one version of what might happen (clinical “facts”) may actually create outcomes that are different from what would have happened without this information (another (...) version of “facts”). This essay argues that the perceived tension between balancing informed consent with nonmaleficence might be resolved by recognizing that adverse effects have no clear black or white “truth.” This essay suggests a pragmatic approach for providers to minimize nocebo responses while still maintaining patient autonomy through “contextualized informed consent,” which takes into account possible side effects, the patient being treated, and the particular diagnosis involved. (shrink)

The article examines the new discourse on medical professionalism and responsibility through the prism of conflicts among moral values, especially with regard to truth-telling. The discussion is anchored in the renaissance of English-language writing on medical ethics in the 18th century, which paralleled the rise of humanitarianism and the advent of the word “responsibility”. Following an analysis of the meanings of the value of responsibility in general and in medical practice in particular, it is argued that, similarly to the Aristotelian (...) notion of equity, responsibility of care is a second-order value, which corrects virtues, laws and norms in exceptional circumstances. Virtues and practices of the second order, such as responsibility and deliberation, bear especially on professional doctoring, which includes a commitment to give priority to the good of the patient over one’s own good. It is argued that, in situations of conflict, and particularly conflicts between personal moral identity and the good of patients, the fundamental professional commitment is to critical and rational deliberation and to the cultivation of psycho-moral flexibility. This leads indirectly to moral growth and strengthening of professional character. (shrink)