Children's autonomy includes, as far as possible, self-determination, bodily integrity and the right to influence outcomes. Limits to bodily integrity, which involves no touching without the child's consent or tacit agreement, are discussed. The clinical, legal and ethics literature tends to agree that children may give valid consent to major recommended treatment from around 12 years but may not refuse it until they are legal adults. Research shows that young children are more aware of their bodily integrity and autonomy, of (...) morality and decision making, than was assumed in the past. Adults therefore need to inform children and respect their initially instinctive efforts to protect their bodily integrity. Unlike assent, consent involves patients being adequately informed and being able to accept or refuse proposed treatment. Reasons are given for adults’ need to consult with children when determining their best interests. Beyond words, giving or withholding consent also involves emotions of fear, trust and courage, besides embodied reactions of cooperating with treatment or resisting it, in which young children actively engage. Some clinicians work with the informed cooperation of young children who need lifesaving treatment, and at times accept their refusal. Reasons for differences between mainstream experts’ views and clinical practices are considered. (shrink)

This article addresses how bodily integrity has been mobilised in the context of genital cutting of male infants and the extent to which the concept is taken into account in legal decision-making in the United Kingdom. While bioethicists have debated whether interventions on children's bodies are more appropriately determined on the basis of hypothetical consent or in the child's best interest, it is clear that in law the relevant test is whether interventions are in the child's best interest. As the (...) issue of nonconsensual genital cutting of infants has become more contested, courts have been asked to adjudicate on the best interests of infants in situations where their caregivers disagree about procedures. Although this body of jurisprudence remains (surprisingly) small, in this article we argue that, while there are now discernible trends in such cases (e.g. deferring decision-making until the child has the requisite capacity to decide, engaging with certain human rights norms), too often judicial reasoning about a child's best interests remains largely empty of reasoned content, and in certain respects is regressing. Using the recent case of Re P to exemplify this logic, and drawing on our previous work advocating the value of embodied integrity, we argue that judges should adopt a more substantive framework of values in judging the child's corporeal and other interests in such cases. This would move best interests assessments beyond a mere formalistic exercise and lead to better reasoned legal judgements. (shrink)

Medically unnecessary penile circumcision (MUPC) performed on a non-consenting child has been the subject of increasing critical attention in recent years. This paper provides a behind-the-scenes narrative of the politics of ethical policymaking in the United Kingdom in this area including a discussion about some potential barriers to reform. After a brief overview of ethical guidance for medically unnecessary surgical procedures on children in general and on their genitalia in particular, the paper takes a closer look at three contemporary documents (...) released by UK medical bodies and highlights the unique ethical and safeguarding contradictions in this area. The outcomes of initiatives aimed at engaging constructively with the medical bodies and encouraging wider debate are then described, along with some of the main obstacles to engagement and counter-arguments employed. MUPC is subsequently discussed in a wider societal context, highlighting why serious safeguarding concerns have been raised about what many people believe to be a harmful, preventable practice hiding ‘in plain sight’. The paper ends by calling for UK MUPC guidance to be made consistent with the body of guidance that UK doctors are expected to follow. (shrink)

In this issue of Clinical Ethics, Jonathan Pugh rejects hypothetical consent-based conceptions of the child’s right to bodily integrity (RBI). Pugh also questions the relevance of adults’ regret of past bodily infringements in evaluating potential violations of children’s RBI. Pugh then argues that autonomy serves as the justification for our power to waive our bodily rights. Finally, Pugh claims that the child’s interest in developing the capacity for autonomy is key to evaluating potential RBI violations. In this article, I challenge (...) each of these arguments. First, I argue that it is the circumstances of parents vis-a-vis their children (rather than the difficulties in determining hypothetical agents' values) that should lead us to reject hypothetical-consent-based conceptions of the child’s RBI in favor of best-interests conceptions. Second, I argue that adults’ regret of childhood bodily interventions is highly relevant for evaluating these interventions’ permissibility. Third, I reject the claim that autonomy is the primary justification for our power to waive our bodily rights. Finally, I argue that Pugh overstates the importance of the child’s interest in developing the capacity for autonomy, at least when it comes to debates in contemporary liberal democracies over interventions in children’s bodies. (shrink)

It is widely accepted that children enjoy some form of a right to bodily integrity. However, there is little agreement about the precise nature and scope of this right. This paper offers a conceptual analysis of the child's right to bodily integrity, in order to further elucidate the relationship between the child's right to bodily integrity and considerations of autonomy. Following a discussion of Leif Wenar's work on the structure and justification of rights, I first explain how the adult's right (...) to bodily integrity can be distilled into separate elements that may plausibly be justified by different moral considerations. In particular, I claim that this analysis suggests that whilst the adult's right to bodily integrity is not wholly reducible to bodily autonomy, autonomy nonetheless remains entwined with our understanding of this right in a number of ways. On the basis of this discussion, I go on to outline three important complexities that arise when we consider the child's right to bodily integrity, before particularly focusing on the question of how third parties should determine whether or not to perform a physical interference upon a child who lacks decision-making capacity. Here, I raise some objections to Earp and Mazor's recent attempts to answer this question, before briefly defending an ‘autonomy-based interests’ account of permissible interference, an account that shares in what I take to be the spirit, if not the precise letter, of these earlier views. (shrink)

Background Deep brain stimulation is approved for treating refractory obsessive-compulsive disorder in adults under the US Food and Drug Administration Humanitarian Device Exemption, and studies have shown its efficacy in reducing symptom severity and improving quality of life. While similar deep brain stimulation treatment is available for pediatric patients with dystonia, it is not yet available for pediatric patients with obsessive-compulsive disorder, although soon could be. The prospect of growing indications for pediatric deep brain stimulation raises several ethical concerns relating (...) to bodily integrity, the ability to offer informed assent, and the role pediatric patients play in the decision-making process. Objective The aim of this study is to solicit and assess the views of stakeholders (children, parents, clinicians) on pediatric assent, autonomy, and bodily integrity in the context of potential pediatric deep brain stimulation for obsessive-compulsive disorder. Methods Semi-structured interviews were conducted with pediatric obsessive-compulsive disorder patients ( n = 21), caregivers of pediatric obsessive-compulsive disorder patients aged 14–18 ( n = 19), and clinicians with experience treating refractory obsessive-compulsive disorder ( n = 25). Interviews were transcribed and coded in MAXQDA 2018 and 2020 software and processed for thematic content analysis to isolate and compare specific themes. Results A majority of respondents (74%, 48/65) across all three stakeholder groups voiced that the decision-making process should be collaborative and involve everyone (clinicians: 84% or 21/25, caregivers 71% or 15/21, and patients 63% or 12/19). We identified a split between respondents’ views on who should have the final say in the event of disagreement (38% or 25/65 favored the patient versus 35% or 23/65 favoring caregivers). A split between respondents also emerged concerning the maturity relevant for deep brain stimulation decision-making, with 45% (29/65) favoring developmental maturity (age/physiological development) and 45% (29/65) favoring decisional maturity (capacity to understand and weigh information). A majority of clinicians indicated that they would not move forward with deep brain stimulation without securing patient assent (80% or 20/25), with some stating the only exception is if patient quality of life was very poor and/or they lacked insight. Both caregivers and patients expressed a significant respect for the patient's right to bodily integrity, with 67% of caregivers (14/21) and 68% of patients (13/19) justifying patient involvement in decision-making specifically with reference to infringements of bodily integrity. Conclusion Our findings demonstrate that despite broad agreement across stakeholders that the decision-making process for pediatric deep brain stimulation for obsessive-compulsive disorder should be collaborative and somehow involve pediatric patients, there is disagreement about what this process entails and what factors determine patient involvement in the process. However, there is agreement that children have a right to bodily and brain integrity, which should only be infringed upon in rare circumstances. (shrink)

Children are individuals, and they are owed rights as individuals. Here, I offer a defence of the child's right to bodily integrity against genital cutting and modification practices. The liberal commitment to the right to bodily integrity works with the harm principle as a liberty limiting commitment within a system that respects people's embodied moral personhood and their decisions about their lives and bodies. Like adults within a political system committed to the equal protection of individual rights, children must have (...) equal rights that transcend the differences between them. But, they are different to adults in important ways, both philosophically and empirically. I offer an account of the child's right to bodily integrity that recognises them as particular embodied individuals, and prioritises their welfare interest in having their bodily integrity respected. (shrink)

Children are treated differently to adults in liberal societies with respect to their right to bodily integrity. A commonly given justification for treating them differently is that they supposedly lack the sort of autonomy that is normally attributed to neurotypical adults. As such children fall through the cracks when it comes to protecting their bodily integrity: they are viewed as less than fully autonomous persons in philosophical, medical, and legal settings. With this editorial, we analyse current treatments of the concept (...) of the child's right to bodily integrity and how this relates to their (developing or future) autonomy on various conceptions. (shrink)

Many state laws specify procedures for determining surrogate or proxy decision-makers for end-of-life care in the absence of an advance directive, living will, or other designation. Some laws also set forth criteria that the decision-maker must follow when making medical decisions for an incapacitated patient and determining whether to withdraw life-sustaining treatment. This article provides analysis of a medical ethics case on the question of how to address family allegations that the proxy decision-maker suffers from dementia and is unable to (...) make decisions for the patient. Cases such as this involve interwoven legal and ethical considerations including: how to address concerns that the proxy is making questionable or unreasonable decisions, how to evaluate the proxy's decisional capacity, strategies for enhancing communication, and standards for removing a proxy. This article suggests that “surrogacy ladders” in state law serve not only as a procedural mechanism, but also protect important ethical values such as tiers of moral authority for decision-making, relational autonomy, and privacy. (shrink)

In the USA, one child in 285 children is diagnosed with cancer every year, but thanks to improvements in medicine, the survival rate has reached 80%. However, cancer treatments, such as chemotherapy and radiation, are likely to affect their fertility later in life, limiting their ability to conceive. To reduce this risk, ovarian tissue cryopreservation is a surgical procedure that allows the ovarian tissue to be retrieved and cryopreserved in order to be reimplanted back into the abdomen and restore ovarian (...) function in children who become infertile due to gonadotoxic treatments. A case study published in 2014 offered recommendations to help assess whether such a procedure should be offered to female patients who have not yet entered puberty. This paper will investigate whether, in light of more recent and updated literature, their recommendations may need to be revised. (shrink)

Ethical clinical practice requires cultural competency. In the United States, Hispanics report stronger attitudinal barriers to drug abuse treatment than any other racial/ethnic group. Hispanics report feeling that drug abuse treatment providers do not understand their unique cultural needs and are unfamiliar with their experiences of discrimination and immigration. Using this case study to explore broader ethical and policy issues, this study investigates the extent to which US universities train counselors to address the culturally specific needs of Hispanic patients and (...) how this is reflected in practice in Los Angeles County. Based on a content analysis of the required courses, syllabi, and course descriptions at 30 universities related to culture/race/racism/ethnicity/diversity at the undergraduate and graduate levels on the addiction therapist track, and thematic analysis of eight in-depth interviews with counselors working in outpatient rehabilitation centers in Los Angeles, I argue that cultural competency education for drug abuse counselors is too surface level and infrequent to adequately prepare students for a career in addiction counseling for Hispanic clients. Significant changes must be made to how cultural diversity is valued and prioritized in the field of psychology to provide better care for Hispanic people with a substance use disorder and fulfill the moral obligation to eliminate this health disparity. Although this study focuses on counselors in Los Angeles, these findings are relevant for professionals and healthcare systems across the United States and beyond who seek to provide equitable and effective care for Hispanic patients. (shrink)

Providing in-utero treatments to target specific conditions in the fetus is a relatively new approach in perinatal care, with the vast majority of these treatments being used off-label. The high degree of off-label medication use in the perinatal and neonatal settings raises concern for the safety of both the fetuses and expectant mothers. This report presents two examples of intra-amniotic drug administration based on reported clinical cases. From the ethical framework of medical principlism, we examine the competing ethical duties of (...) autonomy, beneficence, and non-maleficence in this setting. We then lay out three fundamental ethical principles for obtaining informed consent and maximizing clinical benefit. (shrink)

Background Healthcare professionals (HCPs) face a myriad of ethical challenges during the coronavirus disease 2019 (COVID-19) pandemic. However, there is limited literature examining the ethical challenges faced by HCPs in low- and medium-income countries. The research was designed to explore the ethical challenges experienced by HCPs in a Malaysian hospital setting during the pandemic. Methods Semistructured interviews were conducted via video calls with 10 Malaysian HCPs across different clinical disciplines involved in managing patients diagnosed with COVID-19 infections. The calls were (...) audio-recorded, transcribed verbatim and checked. Thematic analysis with constant comparison across transcripts was carried out to identify categories and themes. Results Three main themes emerged. Firstly, there was deprioritisation of care for non-COVID-19 patients resulting from resource limitations. HCPs raised concerns that there was curtailed access to various healthcare services by non-COVID-19 patients. There was also a trade-off between protecting individual patient safety and public health interests. Secondly, patients were disempowered from decision-making; the decision to segregate suspected COVID-19 patients to high-risk areas without seeking patients’ approval may result in an increased risk of infection. Lastly, HCPs expressed internal conflicts when balancing the professional duty of care against concerns about contracting COVID-19 and spreading it to their family members. Conclusion The study highlighted ethical issues faced by HCPs in Malaysia during the pandemic. It underscores the need for clinical ethics consultation services in hospitals to navigate the various ethical dilemmas. (shrink)

The decision of the House of Lords in Gillick v West Norfolk Area Health Authority carved out a safe space for competent minors to confidentially access sexual and reproductive health care and advice in the UK. Ireland is one of the few common law jurisdictions that has not endorsed Gillick or a similar mature minor doctrine, nor has it securely legislated for the right to consent of those aged 16 and 17 years. The legal lacuna created by this deficiency has (...) left young persons in Ireland seeking sexual and reproductive healthcare, and the clinicians who provide this, in a challenging place. While this void has been partially filled with policy statements by bodies such as the Irish College of General Practitioners and the Health Service Executive, nonetheless the legal shortcomings leave both a sense of insecurity, and real world difficulties for adolescents seeking to access to sexual and reproductive healthcare. (shrink)

All four UK nations have, in recent years, introduced “opt out” organ donation systems. Whilst these systems are largely similar, they operate independently. A key feature of each policy is a residency requirement, stipulating that opt out may only apply where the deceased had been ordinarily resident in that nation for at least 12 months. A resident of Scotland who dies in England, for example, would not fall under opt out. Public awareness is the underlying reasoning for such stipulations. A (...) residency requirement was appropriate when Wales was the only UK nation with an opt out system, but, I suggest, the continued imposition of intra-UK borders on organ donation is unjustified now that all four nations operate the same policy. Further, it has the potential to limit organ donation. There is a need for all four systems to be amended to allow for UK-wide applicability, such that providing the deceased was ordinarily resident in the UK, they can fall under opt out in any of the four nations. I argue that such an amendment is ethically justified – continuing to satisfy the public awareness criterion – and practically straightforward. In doing so, I emphasise that my proposed amendment should extend only to the four UK nations, stopping short of the Crown Dependencies even though they also operate opt out systems for organ donation. (shrink)

Background Stroke causes ethically challenging changes in the lives of individuals with stroke (IwS). However, it is unclear whether the changes are stable or dynamic. In this study, a novel concept ‘ethical pathway’ is used to describe the potential changes in the perceived realisation of IwS’ values in temporal passage post-stroke. Ethical pathway includes three central values of nursing: dignity, privacy and autonomy. Aim of the study was to analyse the perceived ethical pathway of IwS over a non-limited post-stroke period, (...) with the purpose to understand the existence of the IwS’ ethical pathway in theoretical level. Design A descriptive and correlational design. Methods The volunteer participants were recruited via the Finnish Brain Association. Data were collected with questions of background variables and the Ethical Pathway of Individuals with Stroke (EPIS) instrument and analysed statistically. The Ethics Committee of the University approved the study and permission for data collection was obtained from the association. Results Sixty-one IwS participated in the study. The ethical pathway varied during the post-stroke time. Of the values, dignity and privacy were realised lower with longer post-stroke time. The life situational factors were associated with the realisation of the values, but not consistently. (shrink)

During clinical ethics consultation training, hands-on practice after acquiring the necessary knowledge under an experienced clinical ethics consultant's supervision is an effective method of obtaining technical and practical skills. However, in regions where clinical ethics consultation is still nascent, few experienced clinical ethics consultants exist. The number of clinical ethics consultation cases is small, making on-the-job training significantly difficult. To address this problem, this study developed a remote supervision program using e-mail and ZOOM and evaluated its effectiveness using Kirkpatrick's learning (...) effectiveness model. The findings confirmed the good learning effects of both programs. In particular, ZOOM's learning effectiveness was greater than e-mail's in Level 2 learning effects. Nevertheless, remote supervision may be an effective method when in-person training is difficult, such as in countries with developing clinical ethics consultations or during the outbreak of infection. (shrink)

In this article, we focus on a particular kind of emotional impact of the pandemic, namely the phenomenology of the experience of moral injury in healthcare professionals. Drawing on Weber's reflections in his lecture Politics as a Vocation and data from the Experiences of Social Distancing during the COVID-19 Pandemic Survey, we analyse responses from healthcare professionals which show the experiences of burnout, sense of frustration and impotence, and how these affect clinicians’ emotional state. We argue that this may relate (...) to the ethical conflicts they experience when they are forced to make clinical decisions where there are no optimal outcomes, and how in turn that impacts on their own emotional state. We then further examine the notion of ‘burnout’ and the phenomenology of ‘moral injury’. Our argument is that these experiences of moral injury across a range of clinicians during the pandemic may be more prevalent and long-standing in psychiatry and mental health than in other areas of healthcare, where ethically difficult decisions and resource constraints are common outside times of crisis. Hence, in these clinical arenas, moral injury and the phenomenology of emotional changes may be independent of the pandemic. The insights gained during the pandemic may provide wider insights into the challenges of developing services and training the workforce to provide appropriate mental health care. (shrink)

This paper argues that the missing voice in clinical ethics is that of informal caregivers. Despite their substantial contribution to care provided to individuals with disabilities, chronic illness or dementia, informal caregivers are rarely thought of as members of the healthcare team and their narratives are rarely listened to and included in clinical and ethical decisions. Addressing this gap, this paper discusses the reasons for the systemic misrecognition of informal caregivers in healthcare systems and argues for their greater narrative inclusion (...) on the clinical, legal and social planes. (shrink)

Loneliness in medicine is a serious problem not just for patients, for whom illness is intrinsically isolating, but also for physicians in the contemporary condition of medicine. We explore this problem by investigating the ideal physician-patient relationship, whose analogy with friendship has held enduring normative appeal. Drawing from Talbot Brewer and Nir Ben-Moshe, we argue that this appeal lies in a dynamic form of companionship incompatible with static models of friendship-like physician-patient relationships: a mutual refinement of embodied virtue that draws (...) both persons together. The ideal physician-patient relationship has a dialectical character that fosters each member's improvement of phenomenologically recognizing and embodying moral virtues. A key component of this dynamic is a commitment to the common goal of the patient's health, realized through joint interactivities and conversations over time. The physician's presence to the patient's suffering—understood best as an alienating phenomenological condition for the patient—orients and discloses possibilities for virtuous caregiving by structuring the meanings of the goals, conversations, and joint narrative constitutive of their relationship. Presence to suffering, paradoxically, is perhaps an important prerequisite for this dynamic partnership. These activities dialectically build an interpretive horizon of understanding through which moral goods and character refinement—in and for the other—may become revealed for both persons in their shared being-in-the-world. This analysis of suffering, mood, and revealing of (possible) moral goods has implications for addressing the modern problem of loneliness for patients and physicians, who are increasingly inhibited from building flourishing relationships with each other. (shrink)

In response to cancer, patients may be thrown into precarious processes of remaking their purpose, identity, and connections to the world around them. Thoughtful and thorough responses to these issues can be supported by person-centered phenomenological approaches to caring for patients. The importance of perspectives on illness offered by theoretical phenomenology will become apparent through the example of the experience of nausea, or perhaps more accurately put—chemo sickness. The focus here is on how chemo sickness alters one's way of relating (...) to the world. I will examine the phenomenon of nausea through the lens of the phenomenological concept of mood—an existential feeling that engenders a diffused tone permeating through one's world and shapes the envisioned possibilities on one's horizon. (shrink)

This special issue aims to spotlight the individual, lived experiences of caregivers and those receiving care–areas often overshadowed by clinical and medicalized narratives within clinical ethics. Our aim is to enrich the discourse by incorporating stories and narratives of medical care and challenge existing clinical practices by emphasizing patient and practitioner experiences. Through a blend of clinical and academic insights, this issue provides phenomenological narratives, highlighting the importance of lived experiences in understanding and improving clinical caregiving practices. The contributions, ranging (...) from theoretical analyses to personal narratives, explore various aspects of caregiving. Each article contributes to a deeper understanding of the phenomenologies of care, advocating for a more inclusive, patient-centered approach in clinical ethics and practice. (shrink)

This paper is particularly concerned with shame, sometimes considered the ‘master emotion’, and its possible role in affecting the consent process, specifically where that shame relates to the issue of diminished health literacy. We suggest that the absence of exploration of affective issues in general during the consent process is problematic, as emotions commonly impact upon our decision-making process. Experiencing shame in the healthcare environment can have a significant influence on choices related to health and healthcare, and may lead to (...) discussions of possibilities and alternatives being closed off. In the case of impaired health literacy we suggest that it obstructs the narrowing of the epistemic gap between clinician and patient normally achieved through communication and information provision. Health literacy shame prevents acknowledgement of this barrier. The consequence is that it may render consent less effective than it otherwise might have been in protecting the person's autonomy. We propose that the absence of consideration of health literacy shame during the consent process diminishes the possibility of the patient exerting full control over their choices, and thus bodily integrity. (shrink)

When our nearest and dearest experience medical crises, we may need to step into caregiving roles. But in doing so, we may find that our new caregiving relationship is actually in tension with the loving relationship that motivated us towards care. What we owe and are entitled to as friends, spouses, and family members, can be different from what we owe and are entitled to as caregivers. For this reason, caregiving carries with it the risk of a type of moral (...) distress that I call “role conflict distress.” Rather than view role conflict distress as a sign that we are falling short, I suggest that it actually speaks to the commitment that we have to the loving relationship that grounds our duty of care. (shrink)

The aim of this paper is to get from a phenomenology of birth towards an ethics of obstetric care: Human rights violations in obstetrics are currently a globally debated phenomenon. Research suggests that maltreatment is widespread and a global phenomenon. However, the prevalence cannot yet be clearly quantified. In view of this problem, it is necessary to take the subjective perspective of those affected seriously. Narrative and phenomenological accounts of birth experiences could help to foster the dialogue between persons giving (...) birth and health professionals. First, I will present narrative accounts of birth experiences recorded by feminist phenomenologists. Second, I will interpret these narrative accounts within a feminist phenomenological framework in order to contribute to a phenomenology of birth, which, in a third step, shall help to develop an ethics of obstetric care. In engaging with the phenomenology of care outlined by feminist care ethicists, I will analyze the elements and conditions of good care, and draw conclusions for an ethic of obstetric and midwifery care. Drawing additionally on the theory of relational autonomy, my paper argues for a relational implementation of self-determination in childbirth. Lastly, I will discuss to what extent the ethical ideal of care has an affinity to the midwifery model of childbirth, and how the current situation of obstetrics prevents a women-centered birth culture. (shrink)

The principle of clinical equipoise has been variously characterized by ethicists and clinicians as fundamentally flawed, a myth, and even a moral balm. Yet, the principle continues to be treated as the de facto gold standard for conducting randomized control trials in an ethical manner. Why do we hold on to clinical equipoise, despite its shortcomings being widely known and well-advertised? This paper reviews the most important arguments criticizing clinical equipoise as well as what the most prominent proposed alternatives are. (...) In the process, it evaluates the justification for continuing to use clinical equipoise as the gold standard for randomized control trials. (shrink)

Children with innate variations of sex characteristics (also termed differences of sex development or intersex traits) are routinely subjected to medical interventions that aim to make their bodies appear or function more typically female or male. Many such interventions lack clear evidence of benefit, they have been challenged for thirty years, and they are now understood to violate children’s rights to bodily autonomy and bodily integrity. In this paper I argue that these persist in part due to epistemic injustices and (...) biomedical authority. Epistemic injustices include limited disclosure of current practices, the systemic marginalisation of community voices and psychosocial professionals, and attempts to discredit or misrepresent testimony. Bioethics has largely failed to change medical practice, and sometimes plays a role in perpetuating epistemic injustices. I find that the development of an intersex movement provides opportunities for epistemic justice and liberation by engaging with other disciplines and promoting oversight of medical decision-making. The paper draws particularly on Australian sources, including internationally influential ethical principles. (shrink)

Objectives The use of empathy during clinical practice is paramount to delivering quality patient care and is important for understanding patient concerns at both the cognitive and affective levels. This study sought to determine how and when physicians self-report the use of empathy when interacting with their patients. Methods A cross-sectional survey of 76 physicians working in a large urban hospital was conducted in August of 2017. Physicians were asked a series of questions with Likert scale responses as well as (...) asked to respond to open-ended questions. Results All physicians self-report that they always (69%) or usually (29.3%) use empathic statements when engaging with patients. 93.1% of physicians believe that their colleagues always (20.7%) or usually (69%) use empathic statements when communicating with patients. Nearly one-third of physicians (33%) indicated that using the words “I understand” denotes an empathic statement. Although 36% of physicians reported that they would like to receive more training or assistance about how and when to use empathy during clinical practice. Significance of Results Despite the self-reported prevalent use of empathic statements, one-third of physicians indicate a desire for more training in what empathy means and when it should be used in a clinical setting. Additionally, nearly one-third of physicians in this study reported using responses that patients may not perceive as being empathic, even when intended to be empathic. This suggests that many physicians feel uncertain about a clinical skill they believe should be used in most, if not all, encounters. (shrink)

Background Doctors often deal with end-of-life issues other than assisted death, such as incompetent patients and treatment withdrawal, including food and fluids. Methods A link to a questionnaire was sent by email three times, at one-week intervals, to the doctors registered in the Northern Section of the Portuguese Medical Association. Results The questionnaire was returned by 1148 (9%) physicians. This study shows that only a minority of Portuguese doctors were willing to administer drugs in lethal doses to cognitively incompetent patients (...) at the request of a family member or other close person, and even less would do it on their initiative. Most doctors favored the withdrawal of life support measures in advanced and progressive diseases at the patient’s request. Still, much fewer doctors agreed with the suspension of supportive life measures at the request of a family member, another close person, or by their own unilateral decision. However, fewer agreed with that action concerning the rest of the food and fluids. Portuguese doctors favor the administration of drugs for suffering control, even foreseeing they could shorten life. Conclusion Most doctors in this study respect patients’ autonomy but disagree with measures decided by others that have an impact on patients’ survival. They also agree with the administration of drugs for suffering control, even considering the possibility of shortening life. (shrink)

Some care home residents with dementia have the capacity, some do not. Staff may need to make decisions about administering care interventions to someone whom they believe lacks the capacity to consent to it, but also resists the intervention. Such intervention can be termed forced care. The literature on forced care (especially reflecting empirical work) is scant. This study aims to investigate how the ethics of forced care is navigated in practice, through ten semi-structured interviews with staff in 1 care (...) home in the North East of England. Participants generally avoided situations where there was overt restraint, taking a flexible approach by either modifying their own behaviour or using covert techniques. The underlying justification given for decisions or actions tended to be that the recipients of care should be valued because of their intrinsic worth as fellow human beings. Participants attempted to put themselves in the position of the resident or think about what a beloved elderly relative would want. The intervention seemed acceptable to staff if the resident was not distressed. When staff were presented with scenario-based questions around capacity they were more successful than when asked direct questions relating to the Mental Capacity Act. Scenario-based training may be helpful to reinforce familiarity and facility with the principles of the Mental Capacity Act. (shrink)

Due to impaired communication, people with aphasia are often in a vulnerable situation and face barriers in accessing health information. This article discusses the contributions ofaugmentative and alternative communication for people with aphasia in optimizing communication, improving language recovery, and mainly in providing education and increasing access to healthinformation. This can be translated into a positive impact on respect for autonomy right, well-being, quality of life, and health outcomes (further participation in the decision-making process, involvement,independence, and control of the rehabilitation (...) process). Health professionals, including nurses, must have communication skills to communicate effectively with this population and also be prepared to useaugmentative and alternative communication strategies. (shrink)

The COVID-19 pandemic has impacted medical care in many ways; previously, a patient would enter a hospital and had an approximate idea of what would happen upon his admission, the physician informed them about it, but in the last two years this scenario has changed. Therefore, our aim was to identify if bioethical principles are present in the physician–patient relationship and the effect of these in the health care provided, through an observational and descriptive study where patients answered the validated (...) ReMePaB questionnaire that measures the presence of bioethical principles in the physician–patient relationship, on the seventh day of their hospital stay and 24 h after discharge, during the period from 1 August to 5 November 2020. In autonomy, an improvement in the score was observed in the second application compared to the first measurement; in the principle of non-vulnerability, the same scenario was observed for the first and second measurements, respectively. In the principles of beneficence, dignity, and justice, no statistically significant differences were observed. Considering the presence or absence of bioethical aspects in health care in this pandemic creates an area of opportunity to know the feelings of the patient during the care received and to maintain what is done well and improve those aspects that can be improved. (shrink)

Adolescent pregnancy results from the complex interaction between various internal and external vulnerabilities. These vulnerabilities persist after the infant's birth when the adolescent becomes a parent. Adolescent parents are unfairly stereotyped as unmotivated and incompetent. Some legislations prohibit adolescents from giving consent on the grounds of incompetency. Despite being different, “competency” is frequently used interchangeably with “capacity”; thus, incompetent individuals are often mistaken to lack capacity. Consequently, legally incompetent adolescents who became parents are frequently disregarded during their infant's decision-making process. (...) This article discusses the distinction between the competence and capacity of adolescent parents, the various vulnerabilities that contribute to an adolescent's incompetency, and advocates respect for the adolescent's capacity in making decisions for her infant. We propose a workflow for obtaining informed consent for infants born to adolescents ethically guided by the respect for individuals principle while staying within the country's legal framework. (shrink)

Navigating conflict in healthcare settings can be challenging for all parties involved. Here, we analyse disputes about the provision of healthcare to patients, specifically exploring how mediation might be used to resolve disputes where healthcare professionals may disagree with the patient themselves or the patient's family about what healthcare is in the patient's best interests. Despite concerns about compromise over the patient's best interests, there is often room for the parties to come together and think about how the dispute might (...) be resolved in a way that is acceptable to all. It is in this space where mediation might step in. We set out the potential benefits and risks of mediation in this article, and argue that there is a need for clearer, empirically grounded evidence on the use of mediation in healthcare disputes. (shrink)

Patients with borderline personality disorder (BPD) are overrepresented in compulsory inpatient care for suicide-protective reasons. Still, much evidence indicates negative effects of such care, including increased suicide risk. Clinical guidelines are contradictory, leaving clinicians with difficult ethical dilemmas when deciding on compulsory care. In this study, we analyse the arguments most commonly used in favour of compulsory care of BPD patients, to find out in what situations such care is ethically justified. The aim is to guide clinicians when deciding on (...) compulsory care for BPD patients and reduce the use of potentially harmful care. The arguments analysed are (a) the patients lack decision competence, (b) the patients lack authenticity, (c) compulsory care saves the patient from suicide, (d) compulsory care safeguards against litigation, complaints, or doctor's anxiety, (e) compulsory care is a practical solution in emergencies, and (f) it is better for the caregiver to ‘err on the safe side’. We conclude that compulsory care is not ethically justified in most cases unless the clinician has probable reason to believe that the patient lacks decision capacity by suffering from a severe mental co-morbidity and stands to benefit from such care. (shrink)

This paper discusses three cultural narratives that threaten the health of people with intellectual/developmental disabilities (IDD) and which have become more evident during the COVID-19 pandemic. These meta-narratives are the medical model of health/disability; the population health approach to health inequalities; and policies premised on the assumption of the importance of national economic growth as an incentive for reducing health inequalities. Evidence exists that health research is more likely to become policy if it fits within a medical model and addresses (...) national economic growth. These two criteria are particularly problematic for people who have IDD. The paper also proposes a research model to facilitate the inclusion of IDD related issues in future policy regarding health inequalities. (shrink)

One of the common domains in health care in which the concept of vulnerability is used is end-of-life care, including euthanasia and assisted suicide (EAS). Since different uses and implications of the notion have been recognised in the literature on EAS, this paper aims to analyse them and reflect on who is the most vulnerable in the context of EAS. A prior exploratory review of the literature has served as a starting point for the discussion. We concluded that vulnerability is (...) a complex, multi-perspective and multi-layered concept, which implies the vulnerability of different stakeholders involved in EAS practices and vulnerability in different aspects of being human (i.e., physical, mental, moral, social and spiritual). A comprehensive understanding of the notion of vulnerability, which balances as well as complements the concept of autonomy, seems to be an indispensable element of the discourse on EAS. (shrink)

Disputes over life-sustaining treatment between clinicians and patients or their surrogates are common in the intensive care unit and expected to increase in America because of an aging population, shifts in medical training, and trends in popular opinions on end-of-life decisions. Clinicians struggle to effectively communicate the recommendation that withdrawing life-sustaining treatment is appropriate when the burdens of treatment outweigh the benefits. This view seems foreign and unimaginable to surrogates like family members with deeply held values motivate them to insist (...) “everything be done” as long as the patient can be physiologically kept alive. For over three decades now, clinicians and bioethicists have sought preventative ethical and policy solutions to avoid or resolve these treatment disputes, including efforts to improve the communication between medical professionals and surrogates. Looking at the history of proposed solutions shows that giving providers more and better communication and negotiation tools may be inadequate on its own. However, better communication has the potential to unearth the motivations and deeper values of the disagreeing parties so that differing perspectives can be recognized and common ground can be established. The latest emphasize on communication has the potential to succeed where other historical solutions have failed. If bioethics is going to successfully analyze and remedy these disputes, the values motivating these views, even ones outside the bioethical consensus, must be acknowledged and respected. In short, better communication will not avoid or resolve life-sustaining treatment disputes in the intensive care unit unless the deeper ethical convictions of the disagreeing parties are recognized and engaged. (shrink)

Restrictive visitation policies produce inequities in healthcare that have meaningful consequences for patients’ health and well-being. There is a surplus of existing literature exploring the consequences of reduced visitation in the setting of pediatric patients lacking decision-making capacity, but relatively little scholarship addressing visitation restriction for less vulnerable adults possessing capacity. Here, we present the case of a patient who suffered serious complications of childbirth, during the delivery of her healthy newborn, leading to prolonged hospitalization. During her treatment course, she (...) was subsequently denied visitation with her newborn, who had been discharged from the hospital, and this had detrimental effects on her recovery. Hospital policies restricting visitation during the COVID-19 pandemic were intended to reduce the risk of disease exposure for both patients and staff, despite conflicting evidence demonstrating this benefit. In contrast, they often have negative effects on patient stress, mood, and physical recovery. The sequelae of this US-based case study argue the need for more holistic hospital visitation policies, placing a specific lens on adult patients receiving a visitation from their newborn children. (shrink)

The Health (Regulation of Termination of Pregnancy) Act 2018 was commenced on 01/01/2019 in Ireland. The Act provides for legal termination of pregnancy under defined circumstances including for any reason at < 12 weeks gestation; and where two doctors agree there is ‘a condition affecting the foetus that is likely to lead to the death of the foetus either before, or within 28 days of, birth’. As such, abortion for congenital anomaly (CA) can occur at a number of time points, (...) depending on the adjudged severity. Infants born with CAs frequently require significant medical intervention and account for a high proportion of admissions to paediatric intensive care units (PICUs). The purpose of this paper was to evaluate the number of infants with CAs admitted to an Irish PICU in the period before and after the implementation of the Act. All PICU admissions < 1 month of age to a single Irish paediatric hospital between 2012 and 2021 were analysed. CAs were recorded, and the periods before and after the commencement of the Act compared. We found a difference in admissions involving CAs, particularly those related to congenital heart disease involving single ventricle anatomy. It is plausible that this difference was as a result of improved access to abortion services following the implementation of the Act. This article explores the legal conditions related to the abortion of a foetus with a CA in Ireland, and the possible impact of the Independent Review of the Operation of the Health ( Regulation of Termination of Pregnancy) Act 2018. (shrink)

The concept of rational suicide argues that suicide could be a rational choice, in certain circumstances. Such an argument faces criticism when there is an accompanying mental illness, as many view suicide as a symptom of mental illness rather than as a rational choice about one's life. More specifically, the rational suicide debate has mostly excluded individuals with schizophrenia, as it is widely seen as a disorder that impairs rational decision making. This paper aims to examine the concept of rational (...) suicide in schizophrenia: Could it be possible that some acts of suicide are driven from a rational choice by patients suffering from schizophrenia? This paper does not include discussions related to physician-assisted dying in schizophrenia. (shrink)