The Scandinavian welfare states are known for their universal access to healthcare; however, health inequalities affecting ethnic minority patients are prevalent. Ethnic minority patients' encounters with healthcare systems are often portrayed as part of a system that represents objectivity and neutrality. However, the Danish healthcare sector is a political apparatus that is affected by policies and conceptualisations. Health policies towards ethnic minorities are analysed using Bacchi's policy analysis, to show how implicit problem representations are translated from political and (...) societal discourses into the Danish healthcare system. Our analysis shows that health policies are based on different ideas of who ethnic minority patients are and what kinds of challenges they entail. Two main issues are raised: First, ethnic minorities are positioned as bearers of ‘culture’ and ‘ethnicity’. These concepts of ‘othering’ become both explanations for and the cause of inappropriate healthcare behaviour. Second, the Scandinavian welfare states are known for their solidarity, collectivism, equality and tolerance, also grounded in a postracial, colour‐blind and noncolonial past ideology that forms the societal self‐image. Combined with the ethical and legal responsibility of healthcare professionals to treat all patients equally, our findings indicate little leeway for addressing the discrimination experienced by ethnic minority patients. (shrink)

BackgroundIn our globalizing world, caregivers are increasingly being confronted with the challenges of providing intercultural healthcare, trying to find a dignified answer to the vulnerable situation of ethnic minority patients. Until now, international literature lacks insight in the intercultural care process as experienced by the ethnic minority patients themselves. We aim to fill this gap by analysing qualitative literature on the intercultural care encounter in the hospital setting, as experienced by ethnic minority patients.MethodsA systematic search was conducted (...) for papers published between 2000 and 2015. Analysis and synthesis were guided by the critical interpretive synthesis approach.ResultsFifty one articles were included. Four dimensions emerged, describing the intercultural care encounter as a meeting of two different cultural contexts of care, in a dynamic and circular process of balancing between the two cultural contexts, which is influenced by mediators as concepts of being human, communication, family members and the hospital’s organizational culture.ConclusionsThis review provides in-depth insight in the dynamic process of establishing intercultural care relationships in the hospital. We call for a broader perspective towards cultural sensitive care in which patients are cared for in a holistic and dignity-enhancing way. (shrink)

Ethnic minority patients face challenges concerning communication and are at higher risk of experiencing health problems and consuming fewer healthcare services. They are also exposed to disparaging societal discourses about migrants which might undermine healthcare institutions’ ambitions of equitable health care. Therefore, healthcare professionals need to critically reflect on their practices and processes related to ethnic minority patients. The aim of this article is to explore healthcare professionals’ experiences of working with ethnic minority patients by using the (...) critical incident (CI) technique. In two focus group sessions, participants discussed challenging events in their encounters with patients. The critical incidents show that healthcare professionals may experience unfamiliar situations related to their work performance, prejudice toward patients, and labeling by patients the professionals do not identify with. The professionals’ reflections are discussed in relation to social discourses on migration and their work conditions, and the possible influence on the professionals’ preconceptions and the patient–professional relationship in health care. Reflections about work experiences with ethnic minority patients and aligned societal discourses should be included in healthcare workers’ professional development. Critical incident reflections at work may contribute to better‐coping strategies for healthcare professionals and improved patient–professional relationships with ethnic minority patients. (shrink)

Volume 19, Issue 7, July 2019, Page 64-65.

Ethnic minority patients have been discussed and problematised in Western health literature. Drawing on an interpretation of central parts of the French philosopher Michel Foucault's authorship, we analysed a broad selection of materials to identify mechanisms through which the truth about ethnic minority patients is constructed. We identified a single, yet consistent discursive strategy that we termed ‘figure of inconvenience’ in which ethnic minority patients were classified and assigned a specific subjection illustrating them as ‘inconvenient’ to the (...) nurse's practice. Concurrently, their relatives were afforded the position of substitutes. The discourse exemplifies how the behaviour or appearances of ethnic minority patients cannot be reconciled with the traits of ethnic Danish patients. Finally, we discussed implications that such a strategy may have for the provision of healthcare services for ethnic minority patients in Denmark. (shrink)

This article discusses how the Generic Model of Psychotherapy can help to organize the psychotherapy research and the knowledge in the field of psychotherapy for sexual and gender minority patients. The structure that this traditional model provides is a good foundation for research in this field, inasmuch as it stresses macrosocial aspects that determine the provision of psychotherapy and contextualize its outcomes. Each one of the main components offered by the Generic Model of Psychotherapy – Determinants, Processes, and Consequences (...) – are specified for psychotherapy with LGBT patients and are illustrated with a selection of already existing research in the field of sexual minorities; they are also stress areas marked by knowledge gaps that require future developments. In addition, a set of questions are proposed to contribute to new studies, including the clinical implications that can be derived from this model. (shrink)

Decisions regarding the end-of-life of minor patients are amongst the most difficult areas of decision-making in pediatric health care. In this field of medicine, such decisions inevitably occur early in human life, which makes one aware of the fact that any life—young or old—cannot escape its temporal nature. Belgium and the Netherlands have adopted domestic regulations, which conditionally permit euthanasia and physician-assisted suicide in minors who experience hopeless and unbearable suffering. One of these conditions states that the (...) class='Hi'>minor involved must be legally competent and able to express an authentic and lasting wish to die. This contribution is different from other legal texts on end-of-life decisions in modern health care. Foremost, it deals with the role time-bound components play in our views on the permissibility of such decisions with regard to minor patients. While other disciplines provide profound reflections on this issue, from a legal point of view this side has hardly been explored, let alone examined with regard to its relevance for the legal permissibility of end-of-life decisions in pediatrics. Therefore, the manuscript inquires whether there are legal lessons to be learned if we look more closely to temporality-related aspects of these end-of-life decisions, particularly in connection to a minor patient’s assumable ability to choose death over an agonizing existence. (shrink)

While the clinical promise of much stem cell research remains largely theoretical, patients are nonetheless pursuing unproven stem cell therapies in jurisdictions around the world—a phenomenon referred to as “stem cell tourism.” These treatments are generally advertised on a direct-to-consumer basis via the Internet. Research shows portrayals of stem cell medicine on such websites are overly optimistic and the claims made are unsubstantiated by published evidence. However, anecdotal evidence suggests that parents are pursing these “treatments” for their children, despite (...) potential physical and financial risk. Physicians are in a unique position as they can be expected to be involved in, or privy to, such decisions. In this paper, we consider what duties physicians may have toward minor patients whose parents/guardians wish to engage in stem cell tourism on their behalf. We use the Canadian perspective to address the broadly relevant issues raised by this trend. (shrink)

Canadian and American population-based research concerning sexual and/or gender minority populations provides evidence of persistent breast and gynecologic cancer-related health disparities and knowledge divides. The Cancer's Margins research investigates the complex intersections of sexual and/or gender marginality and incommensurabilities and improvisation in engagements with biographical and biomedical cancer knowledge. The study examines how sexuality and gender are intersectionally constitutive of complex biopolitical mappings of cancer health knowledge that shape knowledge access and its mobilization in health and treatment decision-making. Interviews were (...) conducted with a diverse group of sexual and/or gender minority breast or gynecologic cancer patients. The LGBQ//T2 cancer patient narratives we have analyzed document in fine grain detail how it is that sexual and/or gender minority cancer patients punctuate the otherwise lockstep assemblage of their cancer treatment decision-making with a persistent engagement in creative attempts to resist, thwart and otherwise manage the possibility of discrimination and likewise, the probability of institutional erasure in care settings. Our findings illustrate the demands that cancer places on LGBQ//T2 patients to choreograph access to, and mobilization of knowledge and care, across significantly distinct and sometimes incommensurable systems of knowledge. (shrink)

BackgroundEach individual’s unique health-related beliefs can greatly impact the patient-clinician relationship. When there is a conflict between the patient’s preferences and recommended medical care, it can create a serious ethical dilemma, especially in an emergency setting, and dramatically alter this important relationship.Case presentationA 56-year-old man, who remained comatose after out-of-hospital cardiac arrest, was rushed to our hospital. The patient was scheduled for emergency coronary angiography when his adolescent daughter reported that she and her father held sincere beliefs against radiation exposure. (...) We were concerned that she did not fully understand the potential consequences if her father did not receive the recommended treatment. A physician provided her with in depth information regarding the risks and benefits of the treatment. While we did not want to disregard her statement, we opted to save the patient’s life due to concerns about the validity of her report.ConclusionsVariations in beliefs regarding medical care force clinicians to incorporate patient beliefs into medical practice. However, an emergency may require a completely different approach. When faced with a patient in a life-threatening condition and unconscious, we should take action to prioritize saving their life, unless we are highly certain about the validity of their advance directives. (shrink)

Numerous studies have shown almost uniformly positive opinions among patients and physicians regarding theconceptof advance directives (either a healthcare proxy or living will). Several of these studies have also shown that the actual use of advance directives is significantly lower than this enthusiasm would suggest, but they have not explained the apparent discordance. Nor have researchers explained why members of minority groups are much less likely to complete advance directives than are white patients. In this study, we used (...) a focus group methodology to examine the ways in which diverse populations of patients view the medical, philosophical, and practical issues surrounding advance directives. We were motivated by the significantly lower prevalence of advance directives among African-American and Hispanic patients at one urban teaching hospital (18% for Caucasians, 4% for African-Americans, and 2% for Hispanics). Our premise was that African-American and Hispanic populations, who have had higher rates of morbidity and mortality across numerous disease categories, and historically have had limited access to care and opportunities to discuss health concerns, may be more suspicious about the right of autonomy that an advance directive is designed to ensure. (shrink)

:Use of the best-interests test as the legal standard to justify medical treatment in respect to legally incompetent adults or minors has come under sustained critique over the years. “Best interests” has variously been alleged to be indeterminate as well as susceptible to majoritarian ideology and inherent bias. It has also been alleged to be inferior to rights-based approaches. Against the background of several particularly hard cases involving minors discussed by Gillett in a prior article in this journal, this article (...) considers some of these critiques. It concludes that these critical accounts make significant contributions to enabling a more procedurally and substantively robust consideration of what might be in a child’s best interests. However, it is argued that none of these accounts alone provide a superior framework that would justify jettisoning the concept of best interests. Further, it is suggested that best interests still has an important role in achieving patient-centered decisionmaking in this context. It concludes by suggesting a taxonomy of considerations when determining best interests. (shrink)

BackgroundMinorities are an underrepresented population in clinical trials. A potential explanation for this underrepresentation could be lack of willingness to participate. The aim of our study was to evaluate willingness to participate in different hypothetical clinical research scenarios and to evaluate the role that predictors could have on the willingness of minorities to participate in clinical research studies.MethodsWe conducted a mixed-methods study at the Miami VA Healthcare system and included primary care patients with hypertension. We measured willingness to participate (...) as a survey of four clinical research scenarios that evaluated common study designs encountered in clinical research and that differed in degree of complexity. Our qualitative portion included comments about the scenarios.ResultsWe included 123 patients with hypertension in our study. Of the entire sample, ninety-three patients were minorities. Seventy per cent of the minorities were willing to participate, compared to 60 per cent of the non-minorities. The odds ratio of willingness to participate in simple studies was 0.58; 95 per cent CI 0.18–1.88 p=0.37 and the OR of willingness to participate in complex studies was 5.8; 95 per cent CI 1.10–1.31 p=0.03. In complex studies, minorities with low health literacy cited obtaining benefits as the most common reason to be willing to participate. Minorities who were not willing to participate, cited fear of unintended outcomes as the main reason.ConclusionsMinorities were more likely to be willing to participate in complex studies compared to non-minorities. Low health literacy and therapeutic misconception are important mediators when considering willingness to participate in clinical research. (shrink)

Purpose: A study was made of attitudes of clinical geneticists regarding the age at which minors should be allowed to undergo a carrier test and the reasons they provide to explain their answer. Methods: European clinical institutions where genetic counselling is offered to patients were contacted. 177 (63%) of the 287 eligible respondents answered a questionnaire. Results: Clinical geneticists were significantly more in favour of providing a carrier test to a younger person if the request was made together with (...) the parents than if the adolescent requested the test personally. Although a large fraction of respondents (16%–30%) were “neither unwilling nor willing” to provide a carrier test to a 16-year-old adolescent who requested the test personally, for most disorders slightly more clinical geneticists were “very willing” or “willing”. Conclusion: Age is not the only decisive element when considering the participation of adolescents in decisions affecting their health. The clinical geneticists referred to cognitive, emotional and sexual maturity and the support of parents as crucial elements in their comments regarding when to tell children about their genetic risk or to allow adolescents to request a carrier test. (shrink)

Numerous studies have shown almost uniformly positive opinions among patients and physicians regarding theconceptof advance directives (either a healthcare proxy or living will). Several of these studies have also shown that the actual use of advance directives is significantly lower than this enthusiasm would suggest, but they have not explained the apparent discordance. Nor have researchers explained why members of minority groups are much less likely to complete advance directives than are white patients. In this study, we used (...) a focus group methodology to examine the ways in which diverse populations of patients view the medical, philosophical, and practical issues surrounding advance directives. We were motivated by the significantly lower prevalence of advance directives among African-American and Hispanic patients at one urban teaching hospital (18% for Caucasians, 4% for African-Americans, and 2% for Hispanics). Our premise was that African-American and Hispanic populations, who have had higher rates of morbidity and mortality across numerous disease categories, and historically have had limited access to care and opportunities to discuss health concerns, may be more suspicious about the right of autonomy that an advance directive is designed to ensure. (shrink)

Patients who search for a better treatment, an increased quality of life, or even a chance to preserve life itself may claim to have an interest in accessing investigational medicinal products (IMP), particularly when no validated treatment for their disease or condition exists. For many, awaiting the uncertain and time-consuming process of converting an IMP into an approved drug may not appear a realistic option, as prognoses may be grim and a dramatic outcome may seem hard to avert. Gaining (...) access to an IMP, however, often proves to be a difficult enterprise with a highly uncertain outcome. In addition, the process of seeking access to IMP is surrounded by various ethical issues that will be explored in this article. This paper explores the ethical concerns in two potential tracks of seeking access to IMP for minors: on an individual basis, or collectively, as a patient organisation. In this discourse, several unique ethical and regulatory concerns related to the direct negotiation of access to IMP for minor patients are identified, with a focus on product safety, the recruitment of research subjects, the unnoticed entry of market mechanisms in the recruitment of research subjects, and the sidelining of third parties in the recruitment process. The paper concludes with a concise reflection on the way forward. The quest for access to investigational drugs is particularly relevant to paediatric practice, in which a significant share of the drugs prescribed has never been tested in children or labelled for use in the paediatric population. (shrink)

Patient’s decision making competence is a widely discussed subject. Issues of competence, autonomy, well-being and protection of the patient come up every day. In this article we analyse what role PDMC plays in Dutch legislation and what dilemmas healthcare professionals may experience, notably in patients suffering from Korsakoff’s syndrome. Dilemmas emerge if professionals want to meet the requirements mentioned in Dutch law and the desires of their patients. The autonomy of the patient and the healthcare professionals’ duty to (...) take care of their patient’s best interests, create a tension and lead to uncomfortable situations. Healthcare professionals describe difficulty finding a balance between these issues and assessing the degree of mental competence still present. In long term care situations, quality of the relationship between healthcare professionals and their patients seems to be of much more importance in decision making on minor issues of competence than simply relying on legal or house rules. In being committed to their cases, professionals will be more sensitive to individuals habits, abilities, welfare and dignity, which will make it easier to decide on issues of competence, and to find creative solutions to their dilemmas. (shrink)

Background:The nursing community in the Nordic countries has become multicultural because of migration from European, Asian and African countries. In Norway, minority health care providers are recruited in to nursing homes which have become multicultural workplaces. They overcome challenges such as language and strangeness but as a group they are vulnerable and exposed to many challenges.Purpose:The aim is to explore minority healthcare providers, trained nurses and nurses’ assistants, and their experiences of challenges when working in a multicultural team in a (...) Norwegian context.Research method:The study has a qualitative design, using narrative interviews, and a phenomenological–hermeneutic analysis method to explore the experiences of challenges in dementia care.Ethical considerations:The study was approved by The Norwegian Regional Ethics Committee, and the Norwegian Social Science Data Services.Participation and research context:Five informants from different African, Asian and European countries participated in the study. The study was conducted in a Norwegian nursing home, in a dementia care unit.Findings:The results show that minority health care providers experience and find meaning in being a member of a team, they overcome challenges, characterized by the interdependency in the team, appreciating new cultural experiences and striving to belong. They must overcome challenges such as language problems and the feeling of strangeness.Discussion:The findings are discussed considering Løgstrup’s ethic of proximity, the ethical demand of trust, and interdependency. The ethical demand is an answer to a common, transparent, unspoken agreement to be met, seen, and understood.Conclusion:The study shows that cooperation in a multi-professional and multi-ethnic team is important, and secures the quality of care to persons with dementia. Further research is necessary to examine the relation between a multi-ethnic staff and the patients experiencing dementia. Further research is necessary to examine ethnicity, the relation between a multi-ethnic staff, the patients experiencing dementia and next of kin. (shrink)

Ethical principles are not mere abstract concepts of academic interest. They have to be applied by care providers in the real world under complex, challenging and often perplexing conditions. This paper discusses, through the case of an ethnic minority patient with metastasis of bowel cancer, the ethical dilemma of truth-telling and withholding information about poor prognosis. It highlights the complexities of applying ethical principles in a different cultural milieu, reflecting on different ethical frameworks and justifications. The paper also discusses some (...) of the wider implications of the practices, issues and controversies of truth-telling about prognosis in cross-cultural communication relevant to clinical practice. (shrink)

Objective: To determine the practice in UK hospitals regarding the level of patient involvement and consent when representatives of commercial surgical device manufacturers attend and advise during operations.Methods: An anonymous postal questionnaire was sent to the senior nurse in charge in all 236 UK gynaecology theatres in 2004. 79/236 replies were received.Results: Operating departments were visited every 2 weeks on average by a representative of the surgical device manufacturer. Actual operations were attended every 10 weeks, although there was much variation. (...) 33/79 units consistently obtained patient consent for visits, usually orally, whereas 40/79 units did not. 65/79 units had no guidelines for surgical device representative visits. 91% of nurses in charge believed that there should be guidelines to protect both patients and staff. 6/79 units were preparing local guidelines at the time of the survey.Conclusions: Currently, patient safety, confidentiality and autonomy are being protected by a minority of NHS operating theatres when surgical device representatives attend surgery. National guidelines would hopefully ensure that fully informed patient consent is obtained and that representatives are fully trained and supervised. (shrink)

Patients with severe disorders of consciousness are thought to be unaware of themselves or their environment. However, research suggests that a minority of patients diagnosed as having a disorder of consciousness remain aware. These patients, designated as having “cognitive motor dissociation”, can demonstrate awareness by imagining specific tasks, which generates brain activity detectable via functional neuroimaging. The discovery of consciousness in these patients raises difficult questions about their well-being, and it has been argued that it would (...) be better for these patients if they were allowed to die. Conversely, I argue that CMD patients may have a much higher level of well-being than is generally acknowledged. It is far from clear that their lives are not worth living, because there are still significant gaps in our understanding of how these patients experience the world. I attempt to fill these gaps, by analyzing the neuroscientific research that has taken place with these patients to date. Having generated as comprehensive a picture as possible of the capacities of CMD patients, I examine this picture through the lens of traditional philosophical theories of well-being. I conclude that the presumption that CMD patients do not have lives worth living is not adequately supported. (shrink)

Patients in the vegetative state are wholly unaware of themselves, or their surroundings. However, a minority of patients diagnosed as vegetative are actually aware. What is the well-being of these patients? How are their lives going, for them? It has been argued that on a reasonable conception of well-being, these patients are faring so poorly that it may be in their best interests not to continue existing. I argue against this claim. Standard conceptions of well-being do (...) not clearly support the conclusion that these patients would be better off having life-sustaining treatment withdrawn, and in fact, it may be possible for these patients to retain a passable level of well-being. I suggest that further research into the subjective experiences of these patients will allow us to better promote their well-being. (shrink)

Background This article describes the issues encountered when designing a study to evaluate recruitment of minority ethnic groups into clinical cancer research in order to monitor adherence to the principles for good practice set out in the Department of Health, Research Governance Framework, England. Methods (i) A review of routine data sources to determine whether their usefulness as a source of data on prevalence of cancer in the population by ethnic category. (ii) A local case study at one hospital trust (...) to ascertain whether the ethnicity of cancer trial participants was representative of admitted cancer patients. Results (i) The lack of a comparator population makes it problematic to assess recruitment levels by ethnic group in clinical research. (ii) The odds of being in a trial were 30% lower for a member of a minority ethnic group compared to a white cancer patient after adjusting for disease, age and gender, OR 0.70 (0.53 to 0.94). These results differed for each ethnic group; Asian patients did not appear under-represented while Black and Chinese did so. However, there are important caveats to the findings based on the limited recording of ethnicity. Conclusions The lack of available data on the ethnicity of participants in clinical research and the prevalence of cancer in the population according to ethnicity makes it difficult to design a study to monitor representation of minority ethnic groups. This information is necessary to assess adherence to the Research Governance Framework principle that research evidence reflects the diversity of the population. (shrink)

BackgroundThe psychological burden possibly deriving from not immediately undergoing radical treatment for prostate cancer could be a potential disadvantage of active surveillance, especially in the eve of some relevant clinical exams [i.e., re-biopsy, prostate-specific antigen test, and medical examination]. Even if it is known from the literature that the majority of PCa men in AS do not report heightened anxiety, there is a minority of patients who show clinically significant levels of anxiety after diagnosis. The present study aimed to (...) investigate if demographic, clinical, and psychological variables at the entrance in AS were associated with the risk of developing clinically significant PCa-related anxiety 2 months before the first re-biopsy and to offer psychological support to improve quality of life.Materials and MethodsA total of 236 patients participated in the PCa Research International: AS protocol and in PRIAS-QoL study. Demographic/clinical features, health-related QoL domains, coping with cancer, PCa-related anxiety [Memorial Anxiety Scale for PCa ], personality traits, and decision-making-related factors were assessed at T0. MAX-PC was also administered at T1. PCa-related anxiety at T1 was considered to be of clinical significance if the MAX-PC score was ≥1.5. Multivariable logistic regression coupled to bootstrap was used to detect factors associated with high levels of anxiety.ResultsThe median age was 64.4 years. Fifty-six patients reported MAX-PC total score above the cutoff. Three factors were associated with a high level of PCa anxiety at T1: anxious preoccupation [odds ratio = 4.36], extraversion, and prostate-related symptoms. Physical well-being was associated with a low PCa anxiety subscale ; neuroticism and functional well-being were associated with PSA anxiety. Neuroticism and helplessness/hopelessness were associated with fear of progression.ConclusionOnly a partial portion of the sample experienced significant levels of anxiety after 10 months. Psychological assessment should be routinely conducted to detect risk factors for increased anxiety, offering tailored psychological interventions aimed at promoting interpersonal awareness and emotional well-being. (shrink)

This article explores the concept of minor or general psychotherapy championed by physicians seeking to popularise psychotherapy in the post-Stalin Soviet Union. Understood as a set of skills and principles meant to guide behaviour towards and around patients, this form of psychotherapy was portrayed as indispensable for physicians of all specialities as well as for all personnel of medical institutions. This article shows how, as a result of Soviet teaching on the power of suggestion to influence human organisms, (...) every interaction with patients was conceptualised as a form of psychotherapy, leading to the embrace of placebo as a legitimate form of therapy, and to the blurring of the boundary between therapy and other activities in the clinic. The principles of minor psychotherapy reveal a concept of psychotherapy that is much wider, and rooted in different priorities, than the dominant understanding of this type of treatment found in Western Europe and North America. This article addresses the ethical principles implicit in the Soviet perspective, demonstrating that despite fighting against the uncaring and dismissive attitude of other physicians, Soviet psychotherapists remained rooted in the paternalistic tradition. Finally, it traces the efforts to establish minor psychotherapy as standard practice in medical institutions, which, like many other plans and ambitions of Soviet psychotherapists, were constrained by a lack of resources in the healthcare system. (shrink)

A growing body of evidence suggests that the informed consent process, in which patients are warned about potential side effects of a treatment, can trigger a nocebo effect where expectations about side effects increase side effect occurrence. This has sparked an ethical debate about how much information patients ought to receive before a treatment while trying to balance the moral principles of patient autonomy and nonmaleficence. In keeping with the principle of patient autonomy, the opinion of patients (...) themselves in relation to how much information they want about side effects is of utmost relevance in this debate. The literature was searched to identify surveys assessing patient attitudes towards side effect information. Across a broad variety of patient populations, treatment types, and countries, the majority of patients wished to be fully informed of potential side effects, particularly in relation to frequent and severe side effects, while only a small minority wanted minimal or no information at all. Results from this review suggest that nocebo research should focus on methods of avoiding nocebo effects of informed consent while ensuring that patients are well-informed about potential side effects. (shrink)

Background: Medical decision making is based on patient autonomy and informed consent, which is an integral part of medical ethics, risk management and clinical governance. Consent to treatment has been extensively discussed, but the viewpoint of patients is not well represented. A new consent form was introduced by the Department of Health in 2001.Aims: To determine the information most important to patients, to facilitate evidence-based guidelines and to provide a valid and reliable consent-procedure-satisfaction questionnaire.Methods: An anonymous quantitative survey (...) was carried out, asking 100 patients 15 questions regarding procedures they may need to undergo, using a Visual Analogue Scale to test the importance of each question.Results and discussion: In total there were 77 respondents and the mean age was 48.8 years. There were 52% women and 48% men. Major complications, such as not undergoing the procedure, future management and long-term effect on work, all scored a median of 95%. Least concerns were related to technical details of the procedure and minor complications . All other questions were still considered important . No significant differences were observed between sex, age and professional groups, but a significant difference was observed between the education groups. Qualifications of the doctor did not correlate to any other question.Conclusions: This questionnaire is proposed as a basis for informed consent guidelines to health workers and for measures of satisfaction with the consent procedure. (shrink)

While sexual and gender minorities are at increased risk for poor health outcomes, there is limited data regarding patient-provider interactions. In this study, we explored the perspectives of LGBTQ patients and their encounters with physicians in order to improve our understanding of patient-physician experiences. Using purposive selection of self-identified LGBTQ patients, we performed fourteen in-depth semi-structured interviews on topics of sexual orientation and gender identity, as well as their perceived role in the patient-provider relationship. Coding using a modified (...) grounded theory approach was performed to generate themes. We identified three major themes that demonstrate the complexity of LGBTQ patient experiences. The first, Lacking trust, identifies mistrust and loss of the physician-patient relationship resulting from physicians’ poor or judgmental communication, or from physicians making assumptions about gender, using incorrect pronouns, and not recognizing heterogeneity within the transgender community. A second theme, Being vulnerable, describes the challenges and fears related to comfort of patients with disclosing their sexual orientation and/or gender identity. A final theme, Navigating discrimination, outlines racial or ethnic discrimination which creates an additional burden on top of illness and stigmatized identity. Our results reveal the complex needs of individuals with multiple stigmatized identities when developing relationships with providers. By using an intersectional perspective that appreciates the plurality of patients’ identities, providers can help to improve their relationships with LGBTQ patients. Incorporating intersectional training for medical students and residents could greatly benefit both LGBTQ patients and their physicians. (shrink)

R. E. Ewin has argued that corporations are moral persons, but Ewin describes them as being unable to think or to act in virtuous and vicious ways. Ewin thinks that their impoverished emotional life would not allow them to act in these ways. In this brief essay I want to challenge the idea that corporations cannot act virtuously. I begin by examining deficiencies in Ewin''s notion of corporate personhood. I argue that he effectively reduces corporations to the status of incompetent (...) patients. I shall make use of a richer notion of corporate personhood as I explore the logical relationship between corporate action and the quality of the corporate emotional life. After discussing an alternate methodology for making moral assessments of action I consider briefly two corporate disasters: the crash on Mt. Erebus, the Imperial Foods plant fire. These cases are used to show the inadequacy of Ewin''s thesis that only corporate managers are capable of displaying vice. (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)

R. E. Ewin has argued that corporations are moral persons, but Ewin describes them as being unable to think or to act in virtuous and vicious ways. Ewin thinks that their impoverished emotional life would not allow them to act in these ways. In this brief essay I want to challenge the idea that corporations cannot act virtuously. I begin by examining deficiencies in Ewin's notion of corporate personhood. I argue that he effectively reduces corporations to the status of incompetent (...) patients. I shall make use of a richer notion of corporate personhood as I explore the logical relationship between corporate action and the quality of the corporate emotional life. After discussing an alternate methodology for making moral assessments of action I consider briefly two corporate disasters: the crash on Mt. Erebus, the Imperial Foods plant fire. These cases are used to show the inadequacy of Ewin's thesis that only corporate managers are capable of displaying vice. (shrink)

Background: Current practice frequently fails to provide care consistent with the preferences of decisionally-incapacitated patients. It also imposes significant emotional burden on their surrogates. Algorithmic-based patient preference predictors (PPPs) have been proposed as a possible way to address these two concerns. While previous research found that patients strongly support the use of PPPs, the views of surrogates are unknown. The present study thus assessed the views of experienced surrogates regarding the possible use of PPPs as a means to (...) help make treatment decisions for decisionally-incapacitated patients. -/- Methods: This qualitative study used semi-structured interviews to determine the views of experienced surrogates [n=26] who were identified from two academic medical centers and two community hospitals. The primary outcomes were respondents’ overall level of support for the idea of using PPPs and the themes related to their views on how a PPP should be used, if at all, in practice. -/- Results: Overall, 21 participants supported the idea of using PPPs. The remaining five indicated that they would not use a PPP because they made decisions based on the patient’s best interests, not based on substituted judgment. Major themes which emerged were that surrogates, not the patient’s preferences, should determine how treatment decisions are made, and concern that PPPs might be used to deny expensive care or be biased against minority groups. -/- Conclusions: Surrogates, like patients, strongly support the idea of using PPPs to help make treatment decisions for decisionally-incapacitated patients. These findings provide support for developing a PPP and assessing it in practice. At the same time, patients and surrogates disagree over whose preferences should determine how treatment decisions are made, including whether to use a PPP. These findings reveal a fundamental disagreement regarding the guiding principles for surrogate decision-making. Future research is needed to assess this disagreement and consider ways to address it. (shrink)

BackgroundPrecision medicine development is driven by the possibilities of next generation sequencing, information technology and artificial intelligence and thus, raises a number of ethical questions. Empirical studies have investigated such issues from the perspectives of health care professionals, researchers and patients. We synthesize the results from these studies in this review.MethodsWe used a systematic strategy to search, screen and assess the literature for eligibility related to our research question. The initial search for empirical studies in five data bases provided (...) 665 different records and we selected 92 of these publications for inclusion in this review. Data were extracted in a spreadsheet and categorized into different topics representing the views on ethical issues in precision medicine.ResultsMany patients and professionals expect high benefits from precision medicine and have a positive attitude towards it. However, patients and professionals also perceive some risks. Commonly perceived risks include: lack of evidence for accuracy of tests and efficacy of treatments; limited knowledge of patients, which makes informed consent more difficult; possible unavailability of access to precision medicine for underprivileged people and ethnic minorities; misuse of data by insurance companies and employers, potential of racial stigmatization due to genetic information; unwanted communication of incidental findings; changes in doctor-patient-relationship through focusing on data; and the problem that patients could feel under pressure to optimize their health.ConclusionsNational legislation and guidelines already minimize many risks associated with precision medicine. However, from our perspective some problems require more attention. Should hopes for precision medicine’s benefits be fulfilled, then the ethical principle of justice would require an unlimited access to precision medicine for all people. The potential for autonomous patients’ decisions must be greatly enhanced by improvements in patient education. Harm from test results must be avoided in any case by the highest possible data security level and communication guidelines. Changes in the doctor-patient relationship and the impact of precision medicine on the quality of life should be further investigated. Additionally, the cost-effectiveness of precision medicine should be further examined, in order to avoid malinvestment. (shrink)

Recalcitrant disputes among health care providers and patients or their families may signal deep cultural differences about what interventions are needed or about clinicians’s professional duties. These issues arose in relation to a mother’s request for hymenoplasty or revirgination for her minor daughter to enable an overseas, forced marriage and protect her from an honor killing. The American College of Obstetrics and Gynecology committee recommends against members performing a hymenoplasty or other female genital cosmetic surgeries due to a (...) lack of data concerning their safety and efficacy. A key issue in such cases is how to determine what is in the minor’s best interest and the scope of health care moral or professional’s duties. The Best Interests Standard can serve as a powerful moral tool for resolving cross-cultural disputes and identifying needed policy. (shrink)

Human allografts for life-threatening organ failure have been demonstrated to be lifesaving and are now considered to be standard of care for many conditions. Transplantation of non-vital anatomic body parts has also been accomplished. Hand transplantation after limb loss in adults has been shown to offer some promising benefits in both functional and psychological measures in preliminary studies. It has been suggested to expand eligibility criteria to include minors, with one such operation having already been performed. With this in mind, (...) we examine the current state of hand transplantation research in the context of available alternatives. We examine the ethics of carrying out these operations in minors, including under the protections of clinical research. We argue that children should not be considered for this surgery due to the substantial risks of immunosuppressive medication, the likelihood that the graft will need to be replaced during the patient’s lifetime and the lack of significant compensatory advantages over modern prosthetics. (shrink)

A fourteen year old is diagnosed with aplastic anemia. The teen and his parents are Jehovah’s Witnesses. An ethics consult is called on the day of admission by an ethically sophisticated social worker and attending. The patient and his parents see this diagnosis as “a test of their faith.” The ethical analysis focuses on the mature minor doctrine, i.e. whether the teen has the capacity to make this decision. The hospital chooses to take the case to court, with a (...) result that is at odds with the ethics consultation recommendations. Ethics was never deposed or otherwise invited to be involved with the hearing. Thus the larger question of the relation of ethics and law was brought into stark relief. (shrink)

This article illustrates how a collaborative research process can successfully engage an underserved minority community to address health disparities. Pacific Islanders, including the Marshallese, are one of the fastest growing US populations. They face significant health disparities, including extremely high rates of type 2 diabetes. This article describes the engagement process of designing patient‐centered outcomes research with Marshallese stakeholders, highlighting the specific influences of their input on a randomized control trial to address diabetes. Over 18 months, an interdisciplinary research team (...) used community‐based participatory principles to conduct patient‐engaged outcomes research that involved 31 stakeholders in all aspects of research design, from defining the research question to making decisions about budgets and staffing. This required academic researcher flexibility, but yielded a design linking scientific methodology with community wisdom. (shrink)

In the care of patients with disorders of consciousness (DOC), some ethical difficulties stem from the challenges of accurate diagnosis and the uncertainty of prognosis. Current neuroimaging research on these disorders could eventually improve the accuracy of diagnoses and prognoses and therefore change the context of end-of-life decision making. However, the perspective of healthcare professionals on these disorders remains poorly understood and may constitute an obstacle to the integration of research. We conducted a qualitative study involving healthcare professionals from (...) an acute care university medical center. A short questionnaire captured demographic data as well as the experience of participants with DOC patients. A semi-structured interview was used to explore attitudes toward ethical issues identified in a previous literature review. Qualitative content analysis of interviews was conducted with the NVivo software. Accurate diagnosis among DOC is often regarded as a challenge, but this was generally not the case for our participants because most reported high confidence in DOC diagnoses. However, participants reported struggling with prognosis, especially because of its essential role for end-of-life decision making and communication with families. Variability of opinion between healthcare professionals was reported and identified by some as a minor issue while others stressed how families struggle with different medical opinions. End-of-life decision making encompassed a large proportion of ethical challenges in these patients, and the removal of artificial nutrition and hydration created significant discomfort in a minority of participants. The concept of futility was subject to wide-ranging understandings with both favorable and unfavorable opinions. Our data suggest that to ensure the incorporation of new evidence-based advances, attention should be directed to the real-world practices and challenges of accurate diagnosis and prognosis. Given pervasive challenges in end-of-life care, we recommend improved training of healthcare professionals in the care of patients with DOC, particularly in end-of life care, understanding the context of decision making, and determining how to optimally integrate new neuroscience research on the care of patients with DOC. (shrink)

Animal-derived constituents are frequently used in anaesthesia and surgery, and patients are seldom informed of this. This is problematic for a growing minority of patients who may have religious or secular concerns about their use in their care. It is not currently common practice to inform patients about the use of animal-derived constituents, yet what little empirical data does exist indicates that many patients want the opportunity to give their informed consent. First, we review the nature (...) and scale of the problem by looking at the groups who may have concerns about the use of animal-derived constituents in their care. We then summarise some of the products used in anaesthesia and surgery that can contain such constituents, such as anaesthetic drugs, surgical implants and dressings. Finally, we explore the problem of animal-derived constituents and consent using Beauchamp and Childress’ four principles approach, examining issues of autonomy, beneficence, nonmaleficence and justice. Disclosing the use of animal-derived constituents in anaesthesia and surgery is warranted under Beauchamp and Childress’ four principles approach to the problem. Although there exist systemic and practical challenges to implementing this in practice, the ethical case for doing so is strong. The Montgomery ruling presents additional legal reason for disclosure because it entails that patients must be made aware of risks associated with their treatment that they attach significance to. (shrink)

Unresponsive wakefulness syndrome is a disorder of consciousness wherein a patient is awake, but completely non-responsive at the bedside. However, research has shown that a minority of these patients remain aware, and can demonstrate their awareness via functional neuroimaging; these patients are referred to as having ‘cognitive motor dissociation’. Unfortunately, we have little insight into the subjective experiences of these patients, making it difficult to determine how best to promote their well-being. In this paper, I argue that (...) the capacity to experience pain or pleasure is a key component of well-being for these patients. While patients with unresponsive wakefulness syndrome are believed to be incapable of experiencing pain or pleasure, I argue that there is evidence to support the notion that CMD patients likely can experience pain and pleasure. I analyze current neuroscientific research into the mechanisms of pain experience in patients with disorders of consciousness, and provide an explanation for why CMD patients likely can experience physical pain. I then do the same for physical pleasure. I conclude that providing these patients with pleasurable experiences, and avoiding subjecting them to pain, are viable means of promoting their well-being. (shrink)

Advance directives are propagated as instruments to maintain patients’ autonomy in case they can no longer decide for themselves. It has been never been examined whether patients’ and healthy persons themselves are inclined to adhere to these documents. Patients’ and healthy persons’ views on whether instructions laid down in advance directives should be followed because that is (or is not) “the right thing to do”, not because one is legally obliged to do so, were studied and compared (...) with that of medical staff. Method: Vignette study presenting five cases. Cancer patients, healthy persons, nursing staff and physicians (n = 100 in each group) were interviewed. An adherence score was calculated (maximum value 5). The adherence score is found to be low in all groups, yet lowest in patients (1.55; standard deviation 1.13) and healthy controls (1.60; 1.37). The scores are significantly different between nursing staff on the one hand and patients and healthy controls on the other (p < 0.005 and p < 0.05, respectively), and between doctors and patients (p < 0.05). Interviewees who want these documents to be followed tend to live alone and to have already written an advance directive. Conclusions: Cancer patients and healthy persons widely disregard instructions laid down in advance directives and consider them less binding than physicians and nursing staff do. Only a minority tends to adhere more to advance directives. To improve decision-making at the end of life when patients are no longer able to decide for themselves alternative concepts, such as advanced care planning, should be considered. (shrink)

Nonadherence to treatment continues to be one of psychiatry's greatest challenges. To improve adherence and thus improve the care of patients, clinicians and patients' family members sometimes resort to hiding medication in food or drink, a practice referred to as covert/ surreptitious medication. The practice of covert drug administration in food and beverages is well known in the treatment of psychiatrically ill world-wide but no prevalence rates exist. Covert medication may seem like a minor matter, but it (...) touches on legal and ethical issues of a patient's competence, autonomy, and insight. Medicating patients without their knowledge is not justifiable solely as a shortcut for institutions or families wishing to calm a troublesome patient and thus alleviate some of the burdens of care giving. The paramount principle is ensuring the well-being of a patient who lacks the competence to give informed consent. Ethically, covert/surreptitious administration can be seen as a breach of trust by the doctor or by family members who administer the drugs. Covert medication contravenes contemporary ethical practice. Legally, treatment without consent is permissible only where common law or statute provides such authority. The practice of covert administration of medication is not specifically covered in the mental health legislation in developing countries. Many of the current dilemmas in this area have come to public attention because of two important developments in medical ethics and the law - the increasing importance accorded to respect for autonomy and loss of the parens patriae jurisdiction of the courts [parens patriae means 'parent of the country'; it permitted a court to consent or refuse treatment on behalf of an 'incapacity', or alternatively to appoint a guardian with such powers]. (shrink)

AimTo examine the views of Guinean lay people and healthcare providers regarding the acceptability of HCPs’ refusal to provide care to Ebola patients.MethodFrom October to December 2015, lay people and HCPs in Conakry, Guinea, were presented with 54 sample case scenarios depicting a HCP who refuses to provide care to Ebola patients and were instructed to rate the extent to which this HCP’s decision is morally acceptable. The scenarios were composed by systematically varying the levels of four factors: (...) the risk of getting infected, the HCP’s working conditions, the HCP’s family responsibilities and the HCP’s professional status.ResultsFive clusters were identified: 18% of the participants expressed the view that HCPs have an unlimited obligation to provide care to Ebola patients; 38% held that HCPs’ duty to care is a function of HCPs’ working conditions; 9% based their judgments on a combination of risk level, family responsibilities and working conditions; 23% considered that HCPs do not have an obligation to provide care and 12% did not take a position.ConclusionOnly a small minority of Guinean lay people and HCPs consider that HCPs’ refusal to provide care to Ebola patients is always unacceptable. The most commonly endorsed position is that HCPs’ duty to provide care to Ebola patients is linked to society’s reciprocal duty to provide them with the working conditions needed to fulfil their professional duty. (shrink)

In this paper are explored the ethical implications of the answers to three questions: Whether or not a diseased state is discrete; the criteria by which that question is answered; and how the diseased state is to be identified. Examples are given showing that some states appear to be clearly discrete, and others equally clearly not discrete. The nature of the pertinent evidence will be affected accordingly. It is shown that a slavish and inappropriate concern with categories leads to anomalous (...) ethics. Finally, it is suggested that many of these problems may be avoided by centering the ethics of medicine on optimizing the welfare of the patient rather than by thinking in terms of categorical disease. (shrink)