There is significant controversy over whether patients have a ‘right not to know’ information relevant to their health. Some arguments for limiting such a right appeal to potential burdens on others that a patient’s avoidable ignorance might generate. This paper develops this argument by extending it to cases where refusal of relevant information may generate greater demands on a publicly funded healthcare system. In such cases, patients may have an ‘obligation to know’. However, we cannot infer from the fact that (...) a patient has an obligation to know that she does not also have a right not to know. The right not to know is held against medical professionals at a formal institutional level. We have reason to protect patients’ control over the information that they receive, even if in individual instances patients exercise this control in ways that violate obligations. (shrink)

According to many of its proponents, shared decision making ("SDM") is the right way to interpret the clinician-patient relationship because it respects patient autonomy in decision-making contexts. In particular, medical ethicists have claimed that SDM respects a patient's relational autonomy understood as a capacity that depends upon, and can only be sustained by, interpersonal relationships as well as broader health care and social conditions. This paper challenges that claim. By considering two primary approaches to relational autonomy, this paper argues that (...) standard accounts of SDM actually undermine patient autonomy. It also provides an overview of the obligations generated by the principle of respect for relational autonomy that have not been captured in standard accounts of SDM and which are necessary to ensure consistency between clinical practice and respect for patient autonomy. (shrink)

Non-medical sex selection is premised on the notion that the sexes are not interchangeable. Studies of individuals who undergo sex selection for non-medical reasons, or who have a preference for a son or daughter, show that they assume their child will conform to the stereotypical roles and norms associated with their sex. However, the evidence currently available has not succeeded in showing that the gender traits and inclinations sought are caused by a “male brain” or a “female brain”. Therefore, as (...) far as we know, there is no biological reason why parents cannot have the kind of parenting experience they seek with a child of any sex. Yet gender essentialism, a set of unfounded assumptions about the sexes which pervade society and underpin sexism, prevents parents from realising this freedom. In other words, unfounded assumptions about gender constrain not only a child’s autonomy, but also the parent’s. To date, reproductive autonomy in relation to sex selection has predominantly been regarded merely as the freedom to choose the sex of one’s child. This paper points to at least two interpretations of reproductive autonomy and argues that sex selection, by being premised on gender essentialism and/or the social pressure on parents to ensure their children conform to gender norms, undermines reproductive autonomy on both accounts. (shrink)

Physicians play a critical role in preventing and treating firearm injury, although the scope of that role remains contentious and lacks systematic definition. This piece aims to utilize the fundamental principles of medical ethics to present a framework for physician involvement in firearm violence. Physicians' agency relationship with their patients creates ethical obligations grounded on three principles of medical ethics — patient autonomy, beneficence, and nonmaleficence. Taken together, they suggest that physicians ought to engage in clinical screening and treatment related (...) to firearm violence. The principle of beneficence also applies more generally, but more weakly, to relations between physicians and society, creating nonobligatory moral ideals. Balanced against physicians' primary obligations to patient agency relationships, general beneficence suggests that physicians may engage in public advocacy to address gun violence, although they are not ethically obligated to do so. A fourth foundational principle — justice — requires that clinicians attempt to ensure that the benefits and burdens of healthcare are distributed fairly. (shrink)

Shared Decision Making (‘SDM’) is one of the most significant developments in Western health care practices in recent years. Whereas traditional models of care operate on the basis of the physician as the primary medical decision maker, SDM requires patients to be supported to consider options in order to achieve informed preferences by mutually sharing the best available evidence. According to its proponents, SDM is the right way to interpret the clinician-patient relationship because it fulfils the ethical imperative of respecting (...) patient autonomy. However, there is no consensus about how decisions in SDM contexts relate to the principle of respect for autonomy. In response, I demonstrate that in order to make decisions about what treatment they will or will not receive, patients will be required to meet different conditions depending on the approach proponents of SDM take to understanding personal autonomy. Due to the fact that different conceptions of autonomy yield different obligations, I argue that if physicians and patients satisfied all the conditions described in standard accounts of SDM, then SDM would undermine patient autonomy. (shrink)

The shape and function of ethical imperatives may vary if the context is an interaction between strangers, or those who are well acquainted. This idea, taken up from Stephen Toulmin’s distinction between an “ethics of strangers” and an “ethics of intimacy”, can be applied to encounters in healthcare. There are situations where healthcare personnel (HCP) know their patients (corresponding to an “ethics of intimacy”) and situations where HCP do not know their patients (corresponding to “an ethics of strangers”). Does it (...) make a difference for normative imperatives that follow from central concepts and principles in medical ethics whether HCP know their patients or not? In our view, this question has not yet been answered satisfactorily. Once we have clarified what is meant by “knowing the patient”, we will show that the distinction is particularly relevant with regard to some thorny questions of autonomy in healthcare (e.g., regarding advance directives or paternalism in the name of autonomy), whereas the differences with regard to imperatives following from the principles of justice and beneficence seem to be smaller. We provide a detailed argument for why knowing the patient is ethically valuable in encounters in healthcare. Consequently, healthcare systems should provide fertile ground for HCP to get to know their patients, and structures that foster therapeutic continuity. For this to succeed, a number of questions still need to be clarified, which is an important task for medical ethics. (shrink)

The 2015 UK Supreme Court judgment in Montgomery v Lanarkshire reinforces the importance of informed consent to medical treatment. This paper suggests that Montgomery recognises the challenge faced by vulnerable individuals in choosing between treatment options and making decisions with appreciation of information about material risks. The judgment endorses a form of weak paternalism to safeguard such persons, which is not disrespectful of the aggregate principles of the Mental Capacity Act 2005. But ethical practice requires professionals to tread carefully between (...) weak and hard paternalism in the context of therapeutic interactions with vulnerable patients, while ensuring their awareness of material risks. (shrink)

BackgroundGeneral practitioners often act as gatekeeper, authorizing patients’ access to hospital care. This gatekeeping role became even more important during the current COVID-19 crisis as uncertainties regarding COVID-19 made estimating the desirability of hospital referrals (for outpatient or inpatient hospitalization) complex, both for COVID and non-COVID suspected patients. This study explored Dutch general practitioners’ experiences and ethical dilemmas faced in decision making about hospital referrals in times of the COVID-19 pandemic.MethodsSemi-structured interviews with Dutch general practitioners working in the Netherlands were (...) conducted. Participants were recruited via purposive sampling. Thematic analysis was conducted using content coding.ResultsFifteen interviews were conducted, identifying four themes: one overarching regarding (1) COVID-19 uncertainties, and three themes about experienced ethical dilemmas: (2) the patients’ self-determination vs. the general practitioners’ paternalism, (3) the general practitioners’ duty of care vs. the general practitioners’ autonomy rights, (4) the general practitioners’ duty of care vs. adequate care provision.ConclusionsLack of knowledge about COVID-19, risks to infect loved ones, scarcity of hospital beds and loneliness of patients during hospital admission were central in dilemmas experienced. When developing guidelines for future crises, this should be taken into account. (shrink)

BackgroundInvoluntary 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.MethodsIn-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.ResultsThe 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.ConclusionsInvoluntary 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. (shrink)

Problems arise when applying the current procedural conceptualization of decision-making capacity to paediatric healthcare: Its emphasis on content-neutrality and rational cognition as well as its implicit assumption that capacity is an ability that resides within a person jeopardizes children’s position in decision-making. The purpose of the paper is to challenge this dominant account of capacity and provide an alternative for how capacity should be understood in paediatric care. First, the influence of developmental psychologist Jean Piaget upon the notion of capacity (...) is discussed, followed by an examination of Vygostky’s contextualist view on children’s development, which emphasizes social interactions and learning for decision-making capacity. In drawing parallels between autonomy and capacity, substantive approaches to relational autonomy are presented that underline the importance of the content of a decision. The authors then provide a relational reconceptualization of capacity that leads the focus away from the individual to include important social others such as parents and physicians. Within this new approach, the outcome of adults’ decision-making processes is accepted as a guiding factor for a good decision for the child. If the child makes a choice that is not approved by adults, the new conceptualization emphasizes mutual exchange and engagement by both parties. (shrink)

Background: The theoretical framework of Jϋrgen Habermas suggests that effective communication requires competent participants with an objective attitude that complies with the rules and worlds designated as objective, social and subjective. This situation determines communicative action, which stimulates the search for mutual understanding and results in a process of interaction that promotes self-determination. Objectives: In this study, the discharge letters of patients with myocardial infarction were explored regarding the provision of information. The patient’s right to information and the duty of (...) informing were analysed according to the perspective of Jϋrgen Habermas. Research design: This was a cross-sectional analysis (from a broader longitudinal study) of all discharge letters that were directly related to nursing interventions regarding the provision of information to 106 patients. In this major study, the difficulties faced by patients who experienced a myocardial infarction and the changes in their lifestyles were analysed based on the type of information received. Ethical considerations: The hospital Ethics Committee approved the study, which complied with ethical principles and required informed consent. Findings: In the nursing letters, interventions related to the provision of information were conducted at an average of 3.59 interventions per patient. For 8.5% of the patients, however, no interventions related to the provision of information were performed. The most common area of information during hospitalisation was related to the management of signs and symptoms and applied to 90.6% patients. Discussion: The nursing interventions did not cover patient education, transition processes or awareness of the disease. Thus, the right to information can be questioned. Conclusion: Information is a right, and communication is extremely important. Health professionals should be aware of this importance regarding both care management and the satisfaction guarantee. The sharing of information by health professionals based on their competency is essential for patients to exercise their right to self-determination and decision-making. (shrink)

In this paper it is argued that physicians’ restrictive attitudes in offering abortions during 1946–1965 in Sweden were due to their private values. The values, however, were rarely presented openly. Instead physicians’ values influenced their assessment of the facts presented—that is, the women's’ trustworthiness. In this manner the physicians were able to conceal their private values and impede the women from getting what they wanted and needed. The practice was concealed from both patients and physicians and never publicly discussed. It (...) is also argued that a similar tacit practice could currently be applied by palliative care physicians. Such practice might allow palliative care physicians to be restrictive when offering sedation therapy without appearing paternalistic or declaring conscientious objections. However, the practice runs counter to patients’ right to participate in making decisions. The women seeking abortion began to oppose the situation and eventually a new abortion law was introduced 1975. Patients at the end of life will never be able to protest against palliative care physicians’ restrictive attitudes. This is a vulnerable and weak group, unable to lodge complaints after the treatment. In order to respect patients’ autonomy, even suffering patients at the end of their lives, it is suggested that physicians should openly declare their values when it comes to providing treatments that might shorten life. Such transparency might facilitate more genuine shared decision-making and accordingly less suboptimal end-of-life care. (shrink)

AimsTo examine attitudes towards physician-assisted suicide (PAS) among physicians in Sweden and compare these with the results from a similar cross-sectional study performed in 2007.ParticipantsA random selection of 250 physicians from each of six specialties (general practice, geriatrics, internal medicine, oncology, surgery and psychiatry) and all 127 palliative care physicians in Sweden were invited to participate in this study.SettingA postal questionnaire commissioned by the Swedish Medical Society in collaboration with Karolinska Institute in Stockholm. ResultsThe total response rate was 59.2%. Slightly (...) fewer than half [47.1% (95% CI 43.7–50.5)] of the respondents from the six specialties accepted PAS, which is significantly more than accepted PAS in the 2007 study [34.9% (95% CI 31.5–38.3)]. Thirty-three percent of respondents were prepared to prescribe the needed drugs. When asked what would happen to the respondent’s own trust in healthcare, a majority [67.1% (95% CI 63.9–70.3)] stated that legalizing PAS would either not influence their own trust in healthcare, or that their trust would increase. This number is an increase compared to the 2007 survey, when just over half [51.9% (95% CI 48.0–55.2)] indicated that their own trust would either not be influenced, or would increase.ConclusionsThe study reveals a shift towards a more accepting attitude concerning PAS among physicians in Sweden. Only a minority of the respondents stated that they were against PAS, and a considerable proportion reported being prepared to prescribe the needed drugs for patient self-administration if PAS were legalized. (shrink)

ABSTRACTIn recent work, Joshua Horton and David Keith argue on distributive and consequentialist grounds that research into solar radiation management geoengineering is justified because the resulting knowledge has the potential to benefit everyone, particularly the ‘global poor.’ I argue that this view overlooks procedural and recognitional justice, and thus relegates to the background questions of how SRM research should be governed. In response to Horton and Keith, I argue for a multidimensional approach to geoengineering justice, which entails that questions of (...) how to govern SRM research should be addressed from the very outset – that is, now. (shrink)

Background: Providing care for a home-dwelling person with dementia who resists care is an ethical and practical complex and challenging task. Faced with a growing number of persons with dementia, the healthcare professional’s understanding of how to best care for and prevent unnecessary use of coercion with persons with dementia is of key importance. Research aim: The aim of this study was to explore the use of trust-building interventions in home-dwelling persons with dementia resisting care, as described by health professionals (...) in documents of decisions of forced treatment and care. Research design: A qualitative thematic document analysis inspired by critical realism was conducted. Participants and research context: Descriptions of trust-building interventions were extracted from 88 documents of forced treatment and care for home-dwelling persons with dementia, receiving home healthcare, in 2015 and 2016. Ethical considerations: Approved by the Regional Committee for Medical and Health Research Ethics, reference number 2017/788, and controlled by the Norwegian Centre for Research Data, reference number 54897. The study adhered to the guidelines of the Declaration of Helsinki. Findings: We found that “balancing safe care with the person’s integrity” was an overarching theme that permeated the descriptions of trust-building interventions in the study. Three main themes were identified when the data were analyzed: safeguarding care, protecting integrity, and optimizing the environment. Discussion and conclusion: Health professionals balanced on a thin line between care and integrity when met with resistance from person with dementia. However, the trust-building interventions used in the most challenging situations did not differ from the interventions used in general in dementia care. Two knowledge gaps were identified: how to perform appropriate assessments of situations of home-dwelling persons with dementia when met with resistance to care, and whether environmental initiatives may also benefit home-dwelling persons with dementia who are not easily cared for. (shrink)

Problems arise when applying the current procedural conceptualization of decision-making capacity to paediatric healthcare: Its emphasis on content-neutrality and rational cognition as well as its implicit assumption that capacity is an ability that resides within a person jeopardizes children’s position in decision-making. The purpose of the paper is to challenge this dominant account of capacity and provide an alternative for how capacity should be understood in paediatric care. First, the influence of developmental psychologist Jean Piaget upon the notion of capacity (...) is discussed, followed by an examination of Vygostky’s contextualist view on children’s development, which emphasizes social interactions and learning for decision-making capacity. In drawing parallels between autonomy and capacity, substantive approaches to relational autonomy are presented that underline the importance of the content of a decision. The authors then provide a relational reconceptualization of capacity that leads the focus away from the individual to include important social others such as parents and physicians. Within this new approach, the outcome of adults’ decision-making processes is accepted as a guiding factor for a good decision for the child. If the child makes a choice that is not approved by adults, the new conceptualization emphasizes mutual exchange and engagement by both parties. (shrink)

Background Care homes have been disproportionately affected during the COVID-19 pandemic. Practical challenges of enacting infection control measures in care home settings have been widely reported, but little is known about the ethical concerns of care home staff during the implementation of such measures.. Objectives To understand the ethical challenges perceived by care home staff during the early months of the COVID-19 pandemic. Research design An exploratory qualitative study. Participants and research context A purposive sample of 15 care home staff (...) in different roles and ranks in Hong Kong was recruited to take part in semi-structured interviews between June and August 2020. Ethical considerations Ethical approval for this study was obtained. Participation was voluntary and anonymous. Participants had the right to withdraw from the study at any time without reprisal. Findings Three themes were identified: unclear legitimacy regarding infection control measures, limited autonomy in choices over infection control measures and inevitable harms to residents’ well-being. While the participants expected that they would have legitimated power to implement infection control measures, they were resistant when their right to self-determination of testing and vaccination was infringed. They also felt trapped between ethical duties to protect care home residents from infection risk and the anticipated detrimental effects of infection control measures. Conclusions The findings of this study reveal tensions among the ethical obligations of care home staff in response to a public health emergency. They highlight the importance of strengthening ethical sensitivity and ethical leadership in identifying and resolving the challenges of pandemic responses. (shrink)