Research ethics committees and institutional review boards spend considerable time developing, scrutinising, and revising specific consent processes and materials for survey-based studies conducted on crowdsourcing and online recruitment platforms such as MTurk and Prolific. However, there is evidence to suggest that many users of ICT services do not read the information provided as part of the consent process and they habitually provide or refuse their consent without adequate reflection. In principle, these practices call into question the validity of their consent. (...) In this paper we argue that although the ‘no read problem’ and the routinisation of consent may apply to research participants’ consent practices for studies on crowdsourcing platforms, this is not a serious problem. Furthermore, given that the informational requirements for informed consent in these contexts are minimal, we argue that these participants are, nevertheless, sufficiently informed to give valid consent. We conclude that research ethics committees and institutional review boards should only agonise over the precise details of the informed consent process and materials in those rare cases where appreciable risks to research participants need to be managed. (shrink)

Currently, many women who are expecting to give birth have no option but to attempt vaginal delivery, since access to elective planned caesarean sections (PCS) in the absence of what is deemed to constitute ‘clinical need’ is variable. In this paper, we argue that PCS should be routinely offered to women who are expecting to give birth, and that the risks and benefits of PCS as compared with planned vaginal delivery should be discussed with them. Currently, discussions of elective PCS (...) arise in the context of what are called ‘Maternal Request Caesarean Sections’ (MRCS) and there is a good deal of support for the position that women who request PCS without clinical indication should be provided with them. Our argument goes further than support for acceding to requests for MRCS: we submit that healthcare practitioners caring for women with uncomplicated pregnancies have a positive duty to inform them of the option of PCS as opposed to assuming vaginal delivery as a default, and to provide (or arrange for the provision of) PCS if that is the woman's preferred manner of delivery. (shrink)

In this paper, we argue that there are reasons to believe that an implicit bias for normalcy influences what are considered medically necessary treatments in psychiatry. First, we outline two prima facie reasons to suspect that this is the case. A bias for ‘the normal’ is already documented in disability studies; it is reasonable to suspect that it affects psychiatry too, since psychiatric patients, like disabled people, are often perceived as ‘weird’ by others. Secondly, psychiatry's explicitly endorsed values of well-being (...) and function are hard to measure directly, which is why we see simpler box-ticking conceptions of recovery used in large research studies. This need not be problematic, but might lead to researchers and clinicians focusing too much on treatments that promote easy-to-measure proxies for recovery, instead of what actually matters to psychiatric patients themselves. Next, we provide examples of treatments and treatment decisions within two areas – self-injury and psychosis – which are hard to explain unless we assume that an implicit and harmful normalcy bias is at work. We conclude with some suggestions for clinicians and future research. (shrink)

I introduce a distinction between health need and medical need, and raise several questions about their interaction. Health needs are needs that relate directly to our health condition. Medical needs are needs which bear some relation to medical institutions or processes. I suggest that the question of whether medical insurance or public care should cover medical needs, health needs, or only needs which fit both categories is a political question that cannot be resolved definitionally. I also argue against an overly (...) strict definition of medical need on the grounds that this presupposes, wrongly, that medical intervention should always be a last resort. (shrink)

The concept of medical necessity is often used to explain or justify certain decisions—for example, which treatments should be allowed under certain conditions—as though it had an obvious, agreed-upon meaning as well as an inherent normative force. In introducing this special issue of Clinical Ethics on medical necessity, we argue that the term, as used in various discourses, generally lacks a definition that is clear, non-circular, conceptually plausible, and fit for purpose. We propose that future work on this concept should (...) address three main questions: what medical necessity is (i.e., what makes something medically necessary, as opposed to something else); what the concept does (what ‘work’ is it doing when invoked in different settings); and what should follow, normatively, from the fact that something is indeed medically necessary (on some plausible conception). (shrink)

Medical necessity (claiming that a medical intervention or care is – at minimum – reasonable, appropriate and acceptable) depends on empirical evidence and on the interpretation of that evidence. Evidence and its interpretation define the standard of care. This commentary argues that both the evidence base and its interpretation are currently weak gatekeepers. Empirical meta-research suggests that very few medical interventions have high quality evidence in support of their effectiveness and very few of them also have relatively thorough assessments of (...) their potential harms. Therefore, evidence on the risk-benefit ratios carries almost always very large uncertainty. Arbitration about medical necessity is thus left to the interpretation process. Professional guidelines are notoriously unreliable and biased in this regard. Regulatory approval ends up being the key arbitrator, but over the years the regulatory process has been subverted. Regulatory approval currently does not mean that an intervention has a favourable risk-benefit ratio, but simply that it can be marketed, sold and made profit from. The process leads to a tragedy of commons where the final victim is society at large: medical necessity is invoked as an alibi for medicine to absorb societal resources. (shrink)

When restrictive abortion policies are presented there are often two questions posed: will there be an exception to save the life of the ‘mother’ and will there be an exception in the case of rape or incest. This article will demonstrate that there are no distinctive elements to the first ‘exception’, that do not also apply to all abortions on demand. Through consideration of the potentially lethal impacts of pregnancy on physical and mental health, the case will be made that (...) all requested abortions fit the criteria of ‘medically necessary’. (shrink)

This paper examines the concept of medical necessity as it relates to mental health care rationing, arguing that the normal functioning model of medical necessity is insufficient because it fails to cohere with an important aim and function of mental health care, which is to provide support for individuals in abusive or otherwise difficult personal relationships.

Recent medical innovations like ‘omics’ technologies, mobile health (mHealth) applications or telemedicine are perceived as part of a shift towards a more preventive, participatory and affordable healthcare model. These innovations are often regarded as ‘disruptive technologies’. It is a topic of debate to what extent these technologies may transform the medical enterprise, and relatedly, what this means for medical ethics. The question of whether these developments disrupt established ethical principles like respect for autonomy has indeed received increasing normative attention during (...) the past years. Yet, more fundamental ethical considerations of a possible disruption of the concept of ‘medical necessity’ (and the potential ensuing clinical ramifications) have been limited if not absent. It is our modest – though morally and practically relevant – aim to address this objective in this article, by exploring how the current wave of allegedly disruptive innovation is invoking a resurgence of this concept and related debates on ‘the’ goal(s) of medicine. (shrink)

Imagine that we are considering whether our healthcare system (or insurer) should fund treatment or procedure X. One factor that may be cited is that of so-called ‘medical necessity’. The claim would be that treatment X should be eligible for funding if it is medically necessary, but ineligible if this does not apply. Similarly, (and relevant to the debates in this special issue), if considering whether a particular treatment should be ethically and/or legally permitted, we may wish to distinguish between (...) cases where the treatment is medically necessary, and those were it is not. But what do we mean by this concept? Here I will propose and briefly defend one plausible and practical definition. (shrink)

Minor-attracted persons raise multiple ethical and legal challenges. Sexual contact between adults and children is justly prohibited on child welfare grounds. Advances in technology raise the prospect of interventions for minor-attracted persons that have the potential to reduce harm to children by diverting would-be offenders to other endeavors that nonetheless may generate moral disgust This essay examines three of these potential harm reduction technologies (sex robots, haptic devices and synthetic child pornography) and raises the possibility that their use can be (...) justified and their acceptance morally obligatory if doing so reduces harm to real children. (shrink)

No laws or official guidelines govern medical assistance for dying in Japan. However, over the past several years, cases of assisted suicide or voluntary euthanasia, rarely disclosed until recently, have occurred in close succession. Inspired by these events, ethical, legal, and social debates on a patient’s right to die have arisen in Japan, as it has in many other countries. Several surveys of Japanese people’s attitudes towards voluntary assisted dying suggest that a certain number of Japanese prefer active euthanasia. Against (...) this background, it is important to discuss voluntary assisted dying cases in Japan and the Japanese views on them and to consider their implications. We review three recent Japanese voluntary assisted dying cases and discuss the various objections to voluntary assisted dying that have been published in response to these in various media outlets. Our counterarguments include the double suffering of people who are unable to give up their desire to die, individuality of death, variability of culture, problem of being an annoyance to (burden on) others, a slippery slope argument supporting voluntary assisted dying, and unfair claims about responsibility and excessive burden on people who are unable to give up their desire to die. We also point out the psychocultural and social problems in Japanese society that these objections reflect, and argue that voluntary assisted dying can be ethically acceptable under certain conditions. We conclude that Japanese society must change in order to enable those who sincerely wish to die to do so in a better way. (shrink)

Patient families sometimes ask health professionals, ‘What would you do if this were your family member?’ The purpose of this paper is to examine appropriate responses to this Question. Health professionals may say, ‘It all depends on the patient's wishes’, or ‘I don't know what is best, because my family is different from yours in many ways’. Some may believe that the most favourable course of action is the same regardless of who the patient is and explain this to the (...) patient's family, while others may refuse to answer the Question saying it is personal, or argue that such a Question should neither be asked nor answered because it is unreasonable and unprofessional to do so. We believe that, in principle, health professionals should give an honest answer as to what they would do if the patient was their family member, recognising and empathising with the fact that the patient's family is in a difficult and vulnerable position, and that their circumstances forced them to ask such a Question. Moreover, personal and emotional views of health professionals regarding treatment options may help the patient's family make important decisions. An honest answer will help strengthen the trusting relationship between health professionals and the patient's family and support their decision-making. (shrink)

Introduction Respecting the Patients’ Rights Charter leads to the demands of patients for their rights and the response of rehabilitation therapists by increasing their compliance. The present study aimed to compare the views of patients and rehabilitation therapists about the importance and extent of compliance with the Patients’ Rights Charter. Methods This cross-sectional study was conducted for 3 months on 114 patients and 55 therapists who were selected using the convenience sampling method. The data collection tools included a demographic information (...) form and the Justification and Practice of Patient Rights Questionnaire. The collected data were analyzed using descriptive statistics, independent t-test, paired t-test, and Pearson correlation coefficient. Results Mean scores of the importance of compliance with the Patients’ Rights Charter were 2.21 ± 0.40 and 2.31 ± 0.43 in the group of patients and therapists, respectively. Moreover, the mean scores of compliance with the Patients’ Rights Charter were 1.45 ± 0.48 and 1.53 ± 0.61 from the perspective of patients and therapists, respectively. There was no statistically significant difference between the views of patients and therapists on the importance and extent of compliance with the Patients’ Rights Charter. Discussion and Conclusion The importance of respecting the Patients’ Rights Charter from the perspective of patients and therapists was at a desirable level while the level of compliance with it from the perspective of both groups was moderate. It seems that more research is needed to explain the causes of this discrepancy and increase compliance with the Patients’ Rights Charter in rehabilitation clinics. (shrink)

Background In the coronavirus disease 2019 era, doctors have tried to decrease hospital visits and admissions. To this end, telemedicine was implemented in a non-systematic manner according. The objective of this study was to assess the current knowledge and attitudes of physicians in Alexandria, Egypt, and Punjab, India, toward telemedicine and its ethical and medico-legal issues. Method A cross-sectional study was implemented using an anonymous self-administered questionnaire carried out over two months (July and August 2020). A four-point Likert scale was (...) used to collect data about background knowledge, training in telemedicine and ethical and medico-legal issues in telemedicine practice. Results The questionnaire was completed by 175 Egyptian and 51 Indian physicians from different specialties. A significantly higher percentage of Indian physicians practiced telemedicine than Egyptian physicians during the coronavirus disease 2019 era. Although most physicians had no specific training or licensing to practice telemedicine, most of them practiced telemedicine through their social media accounts. Ethical violations involving waiving patient consent were detected. Significant ethical violations to doctors, for example, blackmail, defamation, hate speech, accusations in a court and violations of privacy, were observed. Indian physicians (39.2%) and Egyptian physicians (24%) thought the penalties should be lower in telemedicine than in traditional practice. Finally, most participants would like to continue using telemedicine after the coronavirus disease 2019 era but with improvements. Conclusions Coronavirus disease 2019 changed the acceptance of telemedicine by physicians. Many ethical and legal issues need to be addressed and clarified using formal training before implementation and standardization of telemedicine services. (shrink)

Objectives During the COVID-19 pandemic, healthcare resources including staff were diverted from paediatric services to support COVID-positive adult patients. Hospital visiting restrictions and reductions in face-to-face paediatric care were also enforced. We investigated the impact of service changes during the first wave of the pandemic on children and young people (CYP), to inform recommendations for maintaining their care during future pandemics. Design A multi-centre service evaluation was performed through a survey of consultant paediatricians working within the North Thames Paediatric Network, (...) a group of paediatric services in London. We investigated six areas: redeployment, visiting restrictions, patient safety, vulnerable children, virtual care and ethical issues. Results Survey responses were received from 47 paediatricians across six National Health Service Trusts. Children's right to health was largely believed to be compromised by the prioritisation of adults during the pandemic (81%; n = 33). Sub-optimal paediatric care due to redeployment (61%; n = 28) and the impact of visiting restrictions on CYP's mental health (79%; n = 37) were reported. Decreased hospital attendances of CYP were associated with parental fear of COVID-19 infection-risks (96%; n = 45) and government ‘stay at home’ advice (89%; n = 42). Reductions in face-to-face care were noted to have disadvantaged those with complex needs, disabilities and safeguarding concerns. Conclusion Consultant paediatricians perceived that paediatric care was compromised during the first wave of the pandemic, resulting in harm to children. This harm must be minimised in subsequent pandemics. Recommendations for future practice which were developed from our findings are provided, including maintaining face-to-face care for vulnerable children. (shrink)

Although prisons provide on-site primary care, the corrections system relies on external hospitals to provide a variety of healthcare services. Compared to the general population, incarcerated patients experience higher rates of chronic medical conditions, mental illness, substance abuse, cancer, traumatic brain injury, assault, and communicable disease. Certain specialties of clinicians are likely to encounter patients who are incarcerated, which makes it important for clinicians to understand how medical decision-making may differ when the patient is a prisoner. The corrections system retains (...) custody of inmates and is responsible for their welfare, including facilitating necessary medical care. However, this does not permit corrections personnel or a warden to automatically assume the role of the patient's medical decision-maker. Except for narrow exceptions, prisoners do not lose their rights to medical decision-making. In some instances, corrections staff or the prison warden have improperly asserted authority to act as the patient's medical decision-maker, such as when the patient lacks decision-making capacity. This violates ethical principles of bodily integrity, respect, and fairness. This paper provides an overview of medical decision-making for incarcerated patients, how surrogate decision-maker hierarchies apply to incarcerated patients without decision-making capacity, and special considerations for this subset of patients. (shrink)

Background Physician-assisted suicide is a controversial issue and has sometimes raised emotion-laden reactions. Against this backdrop, we have analyzed how Swedish physicians are reasoning about physician-assisted suicide if it were to be legalized. Methods and participants We conducted a cross-sectional study and analyzed 819 randomly selected physicians’ responses from general practitioners, geriatricians, internists, oncologists, psychiatrists, surgeons, and all palliativists. Apart from the main questions about their attitude toward physician-assisted suicide, we also asked what would happen with the respondents’ own trust (...) in healthcare if physician-assisted suicide were legalized. Response options were that trust would decrease, not be influenced, or would increase. Results We identified a strong statistical association between on the one hand those whose own trust would increase and who were pro physician-assisted suicide, and on the other hand those who were against physician-assisted suicide and whose own trust would decrease [relative risk: 16.7 (95% confidence interval: 10.2–27.2)]. Among those whose own trust would not be influenced (n = 456), 60% were pro pysician-assisted suicide, 16% were against, and 24% were undecided. Of those whose trust would increase or not be influenced, a large majority supported autonomy-based arguments, whereas those whose trust would decrease supported non-maleficence-based arguments. Conclusion Analyzing the answers after having divided respondents into those whose own trust in healthcare would decrease or increase and not be influenced brings about interesting results such as how the three groups prioritize arguments for and against physician-assisted suicide. This way of analyzing the data seems to be a promising strategy when identifying value-impregnated factual claims. (shrink)

Artificial Intelligence (AI) often outperforms human doctors in terms of decisional speed. For some diseases, the expected benefit of a fast but less accurate decision exceeds the benefit of a slow but more accurate one. In such cases, we argue, it is often justified to rely on a medical AI to maximise decision speed – even if the AI is less accurate than human doctors.

Nowadays, novel techniques such as Reciprocal effortless in vitro fertilization (ReIVF) enable two individuals to “carry the same pregnancy,” that is to “carry” the same embryo in both their bodies. However, even though these techniques are likely to be increasingly requested, little is known about their safety and efficacy, and much less about their bioethical legitimacy and issues. Considering their uniqueness, this study assesses the compatibility of ReIVF as well as of another similar technique with the classical principles of medical (...) ethics: autonomy, beneficence, nonmaleficence, and justice. The aim is twofold: (i) to start investigating whether these techniques and their underlying reasons are, or could ever be, bioethically justifiable and (ii) to make clinicians and any other potentially interested persons such as researchers, lawmakers and prospective parents themselves are more aware of the health and social implications of using these techniques. Hence, after a brief overview of the technical aspects of the procedures that allow two persons to carry the same pregnancy, this study offers a general moral framework that can be useful for starting to address some relevant aspects of these procedures, such as their benefits and harms on the health of the individuals involved, the reasons behind their use, and the possibility that they might be covered by states in the future. Finally, this study provides a bioethical overview on ReIVF as well as on similar techniques considering different perspectives, while also suggesting some questions and recommendations for further research. (shrink)

Congenital deafness is one of the most common birth defects reported. Approximately 70% of congenital deafness is non-syndromic, and approximately 80% of non-syndromic hearing loss results from a genetic cause. Middleton et al.’s1998 study highlighted the negative attitudes of culturally Deaf individuals towards genetic testing for genes known to cause hearing loss. While studies concerning genetic testing for deafness genes reference Middleton’s study, to our knowledge a re-evaluation of the attitudes of Deaf individuals towards genetic testing has not been conducted (...) recently. The purpose of this study is to re-establish attitudes of Deaf individuals towards genetic testing of genes known to cause hearing loss. A computer-based questionnaire was distributed to members of the Deaf community. Responses of participants were recorded and analyzed. The primary investigator then attended Deaf community events and the 2015 Alabama Association of the Deaf Conference, and recruited individuals interested in participating in the study. The surveys were distributed to these individuals and their anonymous responses were analyzed. Our results show there are more positive attitudes within the Deaf community towards genetic counseling, genetic testing, and prenatal testing of genes known to cause hearing loss than were previously documented, although negative attitudes are still present. Additionally, our study shows there is a desire among members of the Deaf community to learn more about and potentially receive these services, despite the fact they are rarely offered by healthcare providers. (shrink)

Informed consent for anesthesia is an ethical and legal requirement. A patient must have adequate decision-making capacity (DMC) as a prerequisite to informed consent. In determining whether a patient has sufficient DMC, anesthesiologists must draw on their knowledge of DMC. Knowledge gaps regarding DMC may result in incorrect assessments of patients’ capacity. This could translate to an informed consent process that is ethically and legally unsound. This study examined the DMC-related knowledge of anesthesiologists in a group of four university-affiliated hospitals. (...) The findings suggest that anesthesiologists have several areas of knowledge deficiency regarding DMC and DMC assessment. These findings could inform the development of undergraduate and postgraduate curricula. (shrink)

Novel immune therapies are increasingly based on the molecular differentiation of disease patterns. The related clinical studies are thus more often characterized by the so-called adaptive study designs (umbrella or basket studies including platform studies), which are continuously adjusted based on novel results. This paper analyses new study designs beyond the often-postulated need for regulation in order to identify ethical problems based on typical structural features and to—whenever possible—suggest solutions. To do so, it addresses the following topics: the relationship between (...) social and scientific values of a study as well as aspects of the scientific validity of new forms of evidence; the inclusion of study subjects under the condition of relative uncertainty; specific challenges in the process of ethical approval, and ethical and practical challenges in the process of informing patients and receiving informed consent. Additionally, the topic of a potential risk–benefit assessment of such therapies is addressed. (shrink)

In this article, we explore alternative conflict resolution strategies to assist families and clinicians in cases of intractable dissent in paediatric health care decision-making. We focus on the ethical and legal landscape using cases from the Australian jurisdiction in New South Wales, while referencing some global sentinel cases. We highlight a range of alternative means of addressing conflict, including clinical ethics support, and contrast and contextualise facilitative or interest-based mediation, concluding that legal intervention via the courts can be protracted and (...) distressing and should be a ‘last resort’. We acknowledge many might view this as the current status quo, but we go further to recommend strategies optimal for all parties to recognise early signs of conflict and prevent its harmful escalation. While more empirical research is needed, we contend that interest-based mediation may be a valuable adjunctive method of conflict resolution. If judiciously distinguished from and utilised with clinical ethical support, it can be an effective tool to address dissent and its negative sequelae in paediatric healthcare decision-making. (shrink)

In a recent issue of this journal, Gamble and Saad offer a taxonomy of conscientious objection in health care with the aim of increasing the common ground in the debate over conscientious objection to prevent parties from talking past each other and help facilitate greater progress on this issue. Although we agree that this is an important and worthwhile project, Gamble and Saad's proposal suffers from several serious weaknesses that limit its ability to do the work set out for it. (...) In this paper, we identify some of the major problems with this particular attempt in order to highlight some desiderata for a taxonomy of conscientious objection in health care that can serve as a guide for developing improved taxonomies of this kind in the future. (shrink)

Disorders of sexual development are a heterogeneous group of disorders in which chromosomal, gonadal or anatomical sex development is atypical. The majority of these children are recognized at birth by ambiguous genitalia. Legal and societal pressures require the physician and parents to assign sex rapidly. Though sex assignment is undebated in several disorders of sexual development, many others need an individualized approach to gender-related concerns. Gender dysphoria is prevalent in disorders of sexual development, and early gender-defining surgeries have potentially lifelong (...) consequences. We use two cases, one of partial androgen insensitivity and another of simple virilizing congenital adrenal hyperplasia to illustrate that in disorders of sexual development, the ethical management principles remain the same at their core despite the vast differences in phenotypes. Sex assignment should maximize functional, psychological and sexual needs. Sex assigned should coincide with gender identity. We propose that we manage such children with the mutual participation of the physician, parents and the child. Though the parents and the physician have the child's best interests when making a decision, the child's developing autonomy should be protected. The communication of the health provider to the parent must be honest if early sex assignment is difficult. (shrink)

Shared decision-making is a well-recognized model to guide decision-making in medical care. However, the shared decision-making concept can become exceedingly complex in adolescent patients with varying degrees of autonomy who have most of their medical decisions made by their parents or legal guardians. The complexity increases further in ethically difficult situations such as terminal illness. In contrast to the typical patient-physician dyad, shared decision-making in adolescents requires a decision-making triad that also includes the parents or guardians. The multifactorial nature of (...) these cases can overwhelm treatment teams, with minimal guidance on how to best approach the patient–parents–physician dynamic in an ethically appropriate manner. Estimated time left to live is the paramount ethical consideration for such cases with respect to shared decision-making. This paper offers a sliding scale to serve as a grounding reference for clinicians who care for terminally ill adolescents and hospital ethics committee members for initiating and guiding the ethical discussion for these patients. This paper also elucidates several other ethically salient features inherent to many of these cases, including quality of life, treatability of disease, cultural influences, among others. Yet how each of these variables is weighed is dependent upon the specific circumstances of each individual case. Ultimately, shared decision-making in adolescent patients with terminal illnesses must be a collaborative and ongoing process that thoughtfully weighs the values and ethical responsibilities of the patient, parents, and physician to ideally reconcile differences and come to a consensus on the best management option for each individual patient. (shrink)

Transplant centers and physicians in the United States have limited guidance on the information which they can and cannot provide to transplant candidates regarding donors of potential organs. Patients may refuse organs for a variety of reasons ranging from pernicious requests including racism to misinformation about emerging medicine as with the COVID-19 vaccine and infection. Patient autonomy, organ stewardship, and equity are often at odds in these cases, but precedent indeed exists to help address these challenges. This work uses such (...) cases to highlight the urgent need for uniform, national policy prohibiting informational requests unrelated to well-established risks. (shrink)

A critical opportunity for identifying children experiencing domestic minor sex trafficking exists in healthcare settings. This quantitative study documented the disconnect between youth seeking help and interventions offered by healthcare providers. Ninety-one sex youth exploited through sex trafficking answered questions detailing their experiences of seeking medical treatment for injuries associated with selling or trading sex. Healthcare providers who were aware that injuries were sustained due to sex trafficking did not always alert legal or mandated reporting authorities. This analysis identified violations (...) of the four pillars of ethical healthcare. This investigation revealed lost opportunities to intervene on behalf of youth suffering trauma and abuse from sex trafficking highlighting the necessity for a formal protocol in healthcare settings to effectively intervene. (shrink)

Introduction This article is a response to Zagouras, Ellick, and Aulisio who presented a case study justifying the questioning of the capacity and autonomy of a young woman with a physical disability who was pregnant and facing coercive pressure to terminate. Case description Julia is described as a 26-year-old woman with a neurological disability that requires her to receive assistance with activities of daily living. She was described as living with her parents who provided her with personal care assistance. Julia (...) became pregnant and her parents wished her to terminate because they did not want to care for her child in addition to her. In fact, Julia's parents threatened her with institutionalization if she did not elect to terminate the pregnancy. Her health care team questioned her decision-making capacity based on her alleged “mental age” and experiences of being sheltered and excluded. The health care team used directive tactics to convince Julia to terminate the pregnancy, which describe as both an ethical and feminist intervention. Discussion The current authors take issue with the case analysis provided by and argue that they neglected to account for numerous instances of systemic ableism that adversely affected Julia, demonstrated prejudicial and judgmental attitudes toward pregnancy and disability, inappropriately questioned her decision-making capacity by infantilizing her, misconstrued the feminist concept of relational autonomy, and colluded with coercive interference from family members. This is a classic example of discriminatory and culturally incompetent reproductive health care for a disabled woman. (shrink)

While the management of treating “hateful” patients has been the subject of considerable commentary, far less attention has been paid to the ethical challenges involved in the treatment of “beloved” patients. This essay offers a non-exhaustive taxonomy of “beloved” patients that includes relatable patients, inspiring patients, empathy-inducing patients, and joyful patients, and then discusses the potential pitfalls involved in the optimal care of each group. By drawing attention to these often overlooked and unwitting risks, the hope is to mitigate both (...) their direct impact upon individual “beloved” patients and their residual impact upon those patients who are not viewed as “beloved” by their providers. (shrink)

During the COVID-19 pandemic, nurses experienced tremendous dilemmas including the need to perform their duties in caring for patients while they have concerns about contracting the disease. This study described the moral distress of nurses in-charge of handling COVID-19 patients which can be used as baseline data for intervention programs in overcoming moral distress among nurses. This descriptive, cross-sectional study was conducted with nurses in-charge of handling COVID-19 treatment rooms. Before conducting the survey, ethical approval was obtained from the Medical (...) Faculty of Universitas Hasanuddin. Questionnaires on moral distress for clinical nurses and the demographic data questionnaire were distributed to 128 respondents. These nurses experienced relatively low levels of moral distress despite the fact that they were generally exposed to morally stressful situations. Education background appeared as a factor influencing this condition, in which higher moral distress was mostly experienced by nurses with undergraduate education. (shrink)

The provision of intensive care enables the lives of neonates, infants and children to be sustained or extended in circumstances previously regarded as impossible. However, as well as benefits, such care may confer burdens that resultingly frame continuation of certain interventions as futile, conferring more harm than or any, benefit. Subsequently, clinicians and families in the paediatric intensive care unit are often faced with decisions to withdraw, withhold or limit intensive care in order to act in the best interests of (...) the child. An integral consideration in respect of these decisions is that futility is a concept that has to be contextualised for all those involved. Recent high-profile legal cases highlight the professional, clinical, legal and social conflicts that can arise when parents and clinicians have different interpretations of futility. In acknowledging the complexity of these conflicts for clinicians, this paper aims to support a better understanding of futility as an integral concept in such difficult and emotive decisions within professional practice. We utilise the concept of futility to frame how these decisions to withdraw or withhold certain invasive life-prolonging interventions are ethically and legally justifiable, even when they disagree or conflict with parental views. To support clinicians in understanding these decisions, we in part use the familiar bioethical framework of Principlism developed by Beauchamp and Childress. We suggest that understanding legal and ethical analysis of futility ultimately will help clinicians in approaching and reflecting on such decision-making. (shrink)

Background The organizational climate in the operating room is special due to the specific conditions of the patient, and the ethical climate may affect moral distress of the operating room staff. Objective This study determined the relationship between ethical climate and moral distress from staff working in operating rooms of hospitals affiliated to Mashhad University of Medical Sciences. Method This analytical study was performed on 169 operating room staff in Mashhad, Iran. The operating room staff was selected using stratified random (...) sampling. The data were collected via Olson's Hospital Ethical Climate Survey and the Corley Moral Distress Scale and analyzed with IBM Statistical Package for the Social Sciences (SPSS) software version 21. Results The results showed no relationship between the ethical climate, the frequency, and intensity of moral distress of the operating room staff ( p > 0.05). In addition, the mean score of the ethical climate was 3.32 ± 0.48, indicating the average ethical climate in the operating room. The mean frequency and intensity of moral distress were 36.36 ± 11.68 and 48.8 ± 15.92, showing a moderate rate. There was a significant inverse relationship between the dimensions of ethical climate, the relationship with physicians, and the intensity of moral distress ( p <0.05). A significant relationship was found between the intensity of moral distress, the level of education, and field of study ( p <0.05). Conclusion The results of the current study showed that interventional programs should be implemented to reduce moral distress and improve the ethical climate in the operating room. (shrink)

In response to a global population with increasingly complex issues at the end of life, a movement in the U.S. has emerged incorporating doulas into end-of-life care. These end-of-life (EOL) doulas are not just focused on the quality of life, but also the quality of death. Like birth doulas, who provide support for pregnant patients and their families, EOL doulas help alleviate physical and mental discomfort in those who are dying. In this paper, we explore the role of EOL doulas (...) in improving the care of unrepresented patients, who lack decision-making capacity and have no surrogates or documents to guide their healthcare decisions. We argue that EOL doulas may help this traditionally underserved population experience a “good death” by answering several ethical and procedural challenges. As quasi-independent, non-medical members of the healthcare team, they provide a balancing, advocating voice on behalf of the patient, and may also help reduce inappropriate treatment, delays in care, and the overburdening of the public guardianship system. As such, attention should be given to formally defining their place within the healthcare infrastructure. Ultimately, we contend that EOL doulas are key to ensuring optimal, ethical care for unrepresented patient populations. (shrink)

The current legal status and medical ethics of routine or religious penile circumcision of minors is a matter of ongoing controversy in many countries. We focus on the United Kingdom as an illustrative example, giving a detailed analysis of the most recent British Medical Association guidance from 2019. We argue that the guidance paints a confused and conflicting portrait of the law and ethics of the procedure in the UK context, reflecting deeper, unresolved moral and legal tensions surrounding child genital (...) cutting practices more generally. Of particular note is a lack of clarity around how to apply the “best interests” standard—ordinarily associated with time-sensitive proxy decision making regarding therapeutic options for a medically unwell patient—to a parental request for a medically unnecessary surgery to be carried out on the genitalia of a healthy child. Challenges arise in measuring and assigning weights to intended sociocultural or religious/spiritual benefits, and even to health-related prophylactic benefits, and in balancing these against potential physical, functional, and psychosexual risks or harms. Also of concern are apparently inconsistent safeguarding standards being applied to children based on their birth sex categorization or gender of rearing. We identify and discuss recent trends in British and international medical ethics and law, finding gradual movement toward a more unified standard for evaluating the permissibility of surgically modifying healthy children's genitals before they can meaningfully participate in the decision. (shrink)

Healthcare professionals may confront ethical issues in practice, particularly when their values conflict with that of their patients or clients. This paper explores an ethical case study in which a dietitian who practices Health at Every Size® has an older adult client who wishes to lose weight. The dietitian believes that losing weight is inappropriate for this client. Using a framework for ethical decision making, this article explores the problem or dilemma, identifies the potential issues involved, discusses the relevant ethical (...) codes, laws, and regulations, and explores possible courses of action and their consequences. By exploring an ethical issue that healthcare professionals may encounter in practice, we can gain a deeper understanding of ethical decision making. (shrink)

Background: Treatment of psychotic disorders in pregnancy is often ethically and clinically challenging, especially when psychotic symptoms impair decision-making capacity. There are several competing ethical obligations to consider: the ethical obligation to maternal autonomy, the maternal and fetal beneficence-based obligations to treat peripartum psychosis, and the fetal beneficence-based obligation to minimize teratogenic exposure. Objective: This article outlines an ethical framework for clinical decision-making for the management of chronic psychosis in pregnancy, with an emphasis on special considerations in the previable and (...) periviable period. Case Presentation: A 31-year-old gravida 2, para 1 with intrauterine pregnancy at 12 weeks and 4 days gestation was brought to the emergency department by her husband seven months after delivering her first child, due to sudden onset of behavioral changes that included self-isolation, not eating, and not taking care of her child. Her past medical history included hypothyroidism and inflammatory bowel disease, but no prior psychiatric illness. After being admitted to the psychiatric hospital, she continued to have poor oral intake and weight loss despite initial inpatient treatment with antipsychotics, levothyroxine, and discontinuation of corticosteroids. Her pregnancy was also complicated by the diagnosis of multiple fetal anomalies at 20 weeks gestation, when the fetus was periviable. Conclusions: For previable or periviable pregnancies, the patient and/or surrogate should decide whether to pursue prenatal genetic screening and invasive diagnostic testing, as well as whether to continue or terminate the pregnancy. When the choice is made to continue the pregnancy, initiation of long-term psychiatric treatment (including medications with potential adverse fetal effects) should be based on shared decision-making between the physician and the patient and/or surrogate. Although some pharmacologic interventions may have potential adverse effects on the developing fetus, the use of psychotropic medications can be ethically justified, even if the patient herself does not have the capacity to consent and requires a surrogate, when the goal is to restore maternal autonomy and minimize the risks of maternal and fetal harm from untreated psychiatric illness. (shrink)

Introduction The act of caring in nursing requires previous deliberation and decision, however this perception only arises when an ethical problem emerges. Objective: Identify ethical problems of nurses action in the area of beginning of human life Method: Exploratory and descriptive method, with a qualitative approach. Semi-structured interviews were used to collect data, who were submitted to content analysis. The sample was constituted by 26 nurses. Results 18 categories of problem areas and 56 ethical problems in early human life were (...) identified. The results obtained are very diverse, including areas such as termination of pregnancy, informed consent or maintaining privacy. However, other problem areas also emerge and numerous new subcategories/ethical problems, including: dealing with miscarriage, extreme situations, minors’ pregnancy, serious malformations detected at birth, consent regarding care during childbirth, Non- identification of a ethical problem, nurse social recognition and non-involvement of the person in labour. Conclusion Nurses face different ethical problems that impact their lives. We intend to contribute in helping to make decisions in this field, which the outset is of hope and joy, but which hides, behind this evidence, countless situations of suffering for everyone involved. The identification of ethical problems in this field, it is the first step to reflect about theme and helping decision-making for nurses that are taking care in this area of beginning of human life, when confronted whit the same type of ethical problems. (shrink)

The aim of this paper is to offer theoretical insights into the care of the self, which often initiates therapist-patient relationships in clinical practice. The reason is that when patients care about their health status, they are inclined to establish a therapeutic relationship with physical therapists. Hence, the care for self may bridge the world of the patient's private experiences and the world of the healthcare system together with its interventions, which is represented by the physical therapist In this framework, (...) care means not only the patient's choice to undergo therapy but also his/her commitment to sustaining its effects in private life. This involves educational interventions by the physiotherapist who inscribes him/herself in his/her patients’ care of the self in order to alter their habits of physical exercise, diet, personal hygiene, body posture, etc. The argument in this paper is informed by the concepts of ethics developed by Michel Foucault and Richard Shusterman. (shrink)

The latest Omicron variant of the novel coronavirus has itself created a novel situation—bringing attention to the topic of healthcare rationing among hospitalized pediatric patients. This may be the first time that many pediatricians, nurses, parents, and public health officials have been compelled to engage in uncomfortable discussions about the allocation of medical care/resources. Simply put, finite budgets, resources, and a dwindling healthcare workforce do not permit all patients to receive unlimited medical care. Triage and bedside rationing decisions are happening (...) in a range of difficult everyday circumstances both implicitly and explicitly, but in ways not recognized by even the best ethically framed intentions. Clinicians and hospital administrators have largely been left on their own “to flatten the rationing curve” in hopes that resources never have to be explicitly rationed at their facility. Unfortunately, the downstream result is a misinformed and distrustful public (i.e. parents, guardians, and caregivers) filled with people who are already burdened with inflammatory pseudoscience narratives and deficits in health literacy. This paper aims to elevate a more thoughtful conversation about healthcare rationing by analyzing some existing ethical principles/framework developed for rationing decision making during previous emergency responses and drawing from the day-to-day clinical perspectives of a frontline pediatric acute care/hospitalist. (shrink)

The Patients Changing Things Together (PATCHATT) programme supports individuals with a life-limiting illness to lead a change that matters to them. Individuals join a facilitated online peer support group to identify an issue they feel strongly about, plan for change and take action to bring that change about. The programme is developed and guided by a Programme Advisory Group with clinical and lay membership. This article charts the trialling of the patients changing thing together ethics pack, designed to support all (...) members of the Programme Advisory Group in taking an equal role in ethical decision-making as they guide the programme's ongoing development. As a trial of its efficacy, the pack was used by the author to consider an ethical dilemma at the heart of the development of the Patients Changing Things Together programme, that is, is it ethical to offer a community palliative care programme which has the potential to bring participants harm as well as good? The author reports a strong ethical argument for offering this programme, while concluding the need for the Programme Advisory Group to make the final decision, using the Patients Changing Things Together ethics pack to consider the results of the evaluation of the programme's pilot. The article concludes that this pack provides an effective tool to guide ethical novices through the ethical complexities of developing a community-based palliative care intervention programme. It raises the issue that such inclusivity is achieved through a normative decision-making process which denies the fluidity and creativity which may inform the best ethical decision-making practice. (shrink)

Background and aim Healthcare professionals are regularly exposed to moral challenges in patient care potentially compromising quality of care and safety of patients. Preventive clinical ethics support aims to identify and address moral problems in patient care at an early stage of their development. This study investigates the occurrence, risk factors, early indicators, decision parameters, consequences and preventive measures of moral problems. Method Semi-structured expert interviews were conducted with 20 interprofessional healthcare professionals from 2 university hospitals in Basel, Switzerland. A (...) Likert scale questionnaire was completed by the interviewees and analysed using descriptive and inferential statistics. Results Healthcare professionals are frequently exposed to a variety of moral problems, such as end-of-life decisions, resource allocation and assessing the patient's will or decisional capacity. Thirty-four different risk factors for moral problems are identified, e.g. patient vulnerability, divergent values or world views, inadequate resources or poor ethical climate. Twenty-one early indicators are recognised such as disagreement between healthcare professionals, patients and relatives, emotional disturbances, gut feeling or conflict of conscience. A variety of preventive measures are suggested and presented in a preventive clinical ethics support process model. The most helpful measures are early ethical conversations with colleagues, early team-internal ethical case discussions and an ethics-trained contact person on the ward. Ethics training, kerbside consultations, proactive ethics consultations, ethics screening and rounds are also considered helpful. Conclusions Clinical ethics support services should not only offer reactive and complex, but also proactive and low-threshold support for healthcare professionals, patients and relatives. (shrink)

Background Ethics of care provides a framework for health care professionals to manage ethical dilemmas and moral resilience may mitigate stress associated with the process and outcomes of ethical reasoning. This review addresses the empirical study of ethics of care and moral resilience, published in the health care literature, and identifies potential research gaps. Methods and procedure Arksey O’Malley's framework was adopted to conduct this scoping review. A literature search was conducted across six databases: CINAHL Plus with full text, PubMed, (...) PsycINFO, EMBASE, Scopus and MEDLINE. We collected and synthesised information on the nature of studies including study design, methods and key findings. Results While there is an abundance of literature describing the potential strengths of an ethics of care approach to ethical reasoning and growing interest in the role of moral resilience in protecting against moral distress, both concepts have received little empirical attention. A total of six relevant publications were selected for review. No studies explored the relationship between ethics of care and moral resilience. However, studies focused upon ethics of care approach as a facilitator of patient-practitioner professional relationships and effective ethical decision making in health care practice. Current evidence explores key characteristics consistent with moral resilience in health care professionals. Conclusion This review identified a dearth of research in ethics of care and moral resilience in healthcare practice. Further empirical investigation may provide a deeper understanding of the translation of ethics of care and moral resilience to health care practice to facilitate workplace culture. (shrink)

Introduction Financial incentive schemes have been commonly used by the hearing aid industry as a way of encouraging device sales. These schemes can lead to a conflict of interest as the hearing device dispenser is torn between personal reward over the best interests of their client. This conflict of interest has the potential for the dispenser to develop “moral distress”, a negative state of mind when an individual’s ethical values contrast with those of the employing organization. The purpose of this (...) study was to investigate if there was a relationship between financial incentives and moral distress in Australian audiologists and audiometrists. Methods An online survey was distributed to all members of Audiology Australia and the Australian College of Audiology via email. Participants rated their perceived moral distress from 0 to 10 on the Moral Distress Thermometer and answered four questions about financial incentives in their respective workplace. Results A total of 65 participants, 42 females and 23 males, completed the online survey. A quarter of participants rated their moral distress corresponding to levels of uncomfortable or above. A statistically significant association was found between financial incentives, sales target setting, and higher perceived moral distress in participants. Conclusions For our sample, the implementation of financial incentives created ethical challenges for practicing audiologists and audiometrists. Modifications to employee rewards programs as well as a regulation of device sales are recommended. (shrink)

Interventions are medically necessary when they are vital in achieving the goal of medicine. However, with varying perspectives comes varying views on what interventions are (un)necessary and, thus, what potential treatment options are available for those suffering from the myriad of conditions, pathologies and disorders afflicting humanity. Medical necessity's teleological nature is perhaps best illustrated in cases where there is debate over using contentious medical interventions as a last resort. For example, whether it is appropriate for those suffering from body (...) integrity dysphoria to receive healthy limb amputations. This paper explores how one's perception of medicine's goal underpins whether interventions are necessary or unnecessary, using the controversial topic of therapeutic amputation as an example. By contrasting ‘classical’ amputations with their more contentious counterparts, it highlights how the idea of medical necessity influences and restrains clinical decision-making. The paper starts by giving an account of body integrity dysphoria, focusing on the debate concerning elective amputation's justifiability. It then introduces Georges Canguilhem's vitalist theory of health, paying particular attention to his emphasis on adaptability. Then, this paper uses his theory as a lens through which to evaluate the appropriateness of therapeutic amputation as a medically necessary procedure. Ultimately, the paper highlights how the label of medical necessity is withheld from potential therapeutic interventions because they fail to conform to pre-established ideas of medicine's purpose and that by doing so, potential harm befalls those who are left with no effective treatments and must look for solutions in the non-clinical world. (shrink)