Little is known about health care professionals’ perceptions regarding what it means to treat patients and families with respect and dignity in the intensive care unit (ICU) setting. To address this gap, we conducted nine focus groups with different types of health care professionals (attending physicians, residents/fellows, nurses, social workers, pastoral care, etc.) working in either a medical or surgical ICU within the same academic health system. We identified three major thematic domains, namely, (...) intrapersonal (attitudes and beliefs), interpersonal (behaviors), and system (contextual) factors that influence treatment with respect and dignity. Participants suggested strategies for improving treatment of patients and families in the ICU with respect and dignity, as well as the related need for enhancing respect among the multidisciplinary team of clinicians. Implementing these strategies will require innovative educational interventions and leadership. Future research should focus on the design and evaluation of such interventions on the quality of care. (shrink)

Public collective hunger strikes take place in complex social and political contexts, require medical attention and present ethical challenges to physicians. Empirical research, the ethical debate to date and existing guidelines by the World Medical Association focus almost exclusively on hunger strikes in detention. However, the public space differs substantially with regard to the conditions for the provision of health care and the diverse groups of healthcare providers or stakeholders involved. By reviewing empirical research on the experience (...) of health professionals with public collective hunger strikes, we identified the following ethical challenges: (1) establishment of a trustful physician–striker relationship, (2) balancing of medico‐ethical principles in medical decision‐making, (3) handling of loyalty conflicts and (4) preservation of professional independence and the risk of political instrumentalization. Some of these challenges have already been described and discussed, yet not contextualized for public collective strikes, while others are novel. The presence of voluntary physicians may offer opportunities for a trustful relationship and, hence, for ethical treatment decisions. According to our findings, it requires more attention to how to realise autonomous medical decisions in the complex context of a dynamic, often unstructured and politically charged setting, which ethical norms should shape the professional role of voluntary physicians, and what is the influence of the hunger strikers' collective on individual healthcare decisions. Our article can serve as a starting point for further ethical discussion. It can also provide the basis for the development of potential guidelines to support health professionals involved in public collective hunger strikes. (shrink)

This study aims to examine the perspectives of healers who specialize in jinx hit, evil eye touch, and the recitation of sacred verses or prayers for individuals experiencing mental health issues, and whether they collaborate with mental health experts. Using the qualitative research method, data were collected from 20 healers with depth interviews and observation techniques. The data obtained were analyzed by descriptive analysis in the 2022 Qualitative Data Analysis Program in Maxquda. According to the results of the (...) research; it was determined that the participants are interested in individuals who come for mental and spiritual-based problems and the effects of the spiritual treatment methods they apply and how reversal processes of the applicant’s progress. In addition, it was revealed that the participants generally have a positive attitude to mental health experts. In line with the data obtained as a result of the research, it is thought that spiritual practices can be included in mental health studies. Furthermore, the research reveals that spiritual support services have a historical long history, and today it is an area that developed under the name of "Pastoral Care" and "Pastoral Counseling" in the West and our country. Considering that this clinical-religious consultancy movement includes various segments of our country, it was concluded that the area needs more development and more research. The findings of the research contribute to the studies carried out in the field of mental health by emphasizing the importance of spiritual support services. (shrink)

Time-limited trials of intensive care have arisen in response to the increasing demand for intensive care treatment for patients with a low chance of surviving their critical illness, and the clinical uncertainty inherent in intensive care decision-making. Intensive care treatment is reported by most patients to be a significantly unpleasant experience. Therefore, patients who do not survive intensive care treatment are exposed to a negative dying experience. Time-limited trials of intensive care treatment (...) in patients with a low chance of surviving have both a small chance of benefiting this patient group and a high chance of harming them by depriving them of a good death. A ‘rule of rescue’ for the critically unwell does not justify time-limiting a trial of intensive care treatment and overlooks the experiential costs that intensive care patients face. Offering time-limited trials of intensive care to all patients, regardless of their chance of survival, overlooks the responsibility of resource-limited intensive care clinicians for suffering caused by their actions. A patient-specific risk–benefit analysis is vital when deciding whether to offer intensive care treatment, to ensure that time-limited trials of intensive care are not undertaken for patients who have a much higher chance of being harmed, rather than benefited by the treatment. The virtue ethics concept of human flourishing has the potential to offer additional ethical guidance to resource-limited clinicians facing these complex decisions, involving the balancing of a quantifiable survival benefit against the qualitative suffering that intensive care treatment may cause. (shrink)

The objective of this article is to explore people’s attitudes toward responsibility in the allocation of public health care resources. Special attention is paid to conceptualizations of responsibility involving blame and sanctions. A representative sample of the Norwegian population was asked about various responsibility mechanisms that have been proposed in the theoretical literature on health care and personal responsibility, from denial of treatment to a tax on unhealthy consumer goods. Survey experiments were employed to study treatment (...) effects, such as whether fairness considerations affect attitudes about responsibility. We find that, overall, a substantial minority of the respondents find it fair to let the health care system sanction people—in one way or another—for voluntary behaviors that increase the risk of becoming ill. Quite surprisingly, we find that people are more prone to report that they should themselves be held responsible for unhealthy lifestyles than others. (shrink)

The problem of providing mandated medical care has become commonplace as correctional systems in the United States struggle to manage unprecedented increases in its aging prison population. This study explores older incarcerated women’s perceptions of prison health care policies and their day-to-day survival experiences. Aggregate data obtained from a sample of 327 older women residing in prison facilities in five Southern states were used to identify a baseline of health conditions and needs for this vulnerable group. (...) With an average of 4.2 chronic health conditions, frequently histories of victimization, and high rates of mental health issues, the women’s experiences of negotiating health care was particularly challenging. By incorporating the voices of older women, we expose the contradictions, dilemmas, and obstacles they experience in their attempts to obtain health care. It is clear from the personal accounts shared that, despite court mandates, penal harm practices such as delaying or denying medical treatment as well as occasional staff indifferences are common in women’s prisons. With older women having the greatest need for health care, an age- and gender-sensitive approach is recommended. (shrink)

Patient and public involvement is widely thought to be important in the improvement of health care delivery and in health equity. Purpose: The article examines the role of experiential knowledge in service co-production in order to develop opiate substitution treatment services (OST) for high-risk opioid users. Method: Drawing on social representations theory and the concept of social identity, we explore how experts’ by experience and registered nurses’ understandings of OST contain discourses about the social representations, identity, (...) and citizenship of the participants and the effects these may have on developing or hindering inclusive and bottom-up forms of patient and public involvement. Results: The meeting sessions that potentially offer room for creativity and problem-solving fail to provide any new propositions for fixing the system. The health care professionals primarily identify themselves as regulators who protect the correctness of their actions and show little interest in considering experiential knowledge on opioid addiction. Conclusion: The participation of patients has been one of the prominent reforms implemented in health care. The goal of client-centered thinking is often emphasised; however, the implementation is not simple due to the strongly institutionalised knowledge and related working patterns and practices in health care. (shrink)

The purpose of this study is to analyze the experience of hope that appears in a parent's blog presenting everyday life while caring for a child with Trisomy 18 (Edwards syndrome). The author, Rebekah Peterson, began her blog on 17 March 2011 and continues to post information on her son Aaron's care. The analysis of hope in the blog is carried out using a mixed methodology: initial and focused coding using Charmaz's constructed grounded theory and elements of Colaizzi's (...) method. Each aspect of hope is coded through the blog author's statements, from which three main aspects of hope emerge: hope for the longest possible presence of Aaron with his family, hope for control over situations, pain, and symptoms, and existential facets of hope. These various aspects reveal to what extent the experience of hope is unique. Additionally, analyzing the experience of parental hope uncovers the additional problem of inappropriate communication by health care professionals (HCPs) in intensive care units, particularly when discussing the termination of causal treatment. The problem may be solved through proper education for HCPs and serious consideration of parental involvement in order to properly elaborate guidelines on this issue. The three main aspects of parental hope discussed in this paper might expand knowledge on the issue, helping HCPs to better understand the parents' experience of care and to help sustain parental hope in pediatric palliative care. (shrink)

Malpractice issues in psychotherapy and psychological treatments refer to the unethical behavior of a psychologist or psychotherapist toward the patient. The current study reviewed complaints directed at psychologists and psychotherapists in Sweden with regard to possible incidents of malpractice. Eligible cases were retrieved from a database managed by the Health and Social Care Inspectorate [Inspektionen för vård och omsorg (IVO)], an administrative authority responsible for the safety and quality of healthcare and social services delivery. These cases were (...) analyzed using thematic analysis. In total, 33 complaints matched the keywords proposed by IVO, and were scrutinized in detail. The cases primarily involved psychiatric care by a psychologist in outpatient settings, although many cases comprised multiple healthcare providers responsible for the patient’s care, or targeted the healthcare unit as a whole. The results demonstrated that different forms of malpractice occur, and can be classified in two general themes, Incorrect administration and implementation and Attitude and behavior, which involve organizational aspects as well as examples of malpractice and unethical behavior. Implications for clinical practice and future research include further training in ethics and malpractice, video recording or auditing sessions, routine outcome monitoring, and providing patients with information on how to file complaints. (shrink)

In this study, we tested the feasibility of conducting quantitative assessments of patients’ experiences with care in the intensive care unit (ICU), in regard to treatment with respect and dignity. Patients completed the Patient Dignity Inventory, Collaborate, and selected domains from the Hospital Consumer Assessment of Health Providers and Systems Survey. Family members were additionally surveyed using the Family Satisfaction in ICU Care questionnaire. Overall, patients reported high levels of satisfaction in terms of nurses and doctors (...) treating them with courtesy and respect; however, physical aspects of care were reported to be more problematic. While this pilot study suggests some target areas for improving treatment with respect and dignity, the findings are limited since many patients were unable to participate in the survey. Future work should be directed at developing new measures that are easier to administer in this setting. (shrink)

The aim of this study was to investigate patients' experiences of not being treated well in medical health care in Stockholm County, Sweden. The study was conducted by implementing qualitative content analysis using categorization of empirical material for 2006 and 2007 provided by the Patients' Advisory Committee (Patientnämnden) in Stockholm. Complaints about not being treated well accounted for 13% of all complaints to the Patients' Advisory Committee. A sample of those who complained about their medical treatment shows that (...) about 30% of these complaints also involved experiences of being badly received. Categorization of the complaints about being badly treated resulted in the following 11 categories: (1) rude, aggressive or arrogant behaviour; (2) being ignored; (3) being denied examinations or treatments; (4) lack of empathy among personnel; (5) lack of respect for personal integrity; (6) lack of time/waiting time; (7) personnel not separating private issues from their professional role; (8) injustice and discrimination; (9) sexual harassment; (10) coercion and violence and (11) unspecified bad treatment. In relation to the total number of patients, women were over-represented in all categories. In conclusion, what patients react most strongly against is when health-care personnel treat them disrespectfully by not abiding by established social norms. The results indicate that the combination of failure in medical treatment and not receiving an apology often leads patients to complain to the Patients' Advisory Committee. (shrink)

Renal replacement therapy is the indicated treatment for individuals with chronic kidney disease (CKD) to survive. However, not all sick people have access to the same treatment. This study compares renal care in two developing countries with different health systems. Specifically, it explores hemodialysis treatment from the perspective of low‐income individuals. A qualitative, comparative study was performed in Brazil and Mexico. Using purposive sampling, the research was based on open‐ended interviews with nineteen participants with kidney failure undergoing hemodialysis (...) treatment in public hospitals and ten relatives. According to our results, Brazilian participants perceived hemodialysis care as satisfactory because of health personnel courtesy as well as free access to dialysis treatment, prescription drugs, hospitalization and transportation. However, they reported deficiencies in the care they were receiving due to shortages of specialists, prescription drugs, laboratory tests and transportation. Mexican participants, in contrast, highlighted the catastrophic costs of medical care because they had no free access to renal therapy, nor adequate financial resources. Our findings suggest that low‐income Brazilian CKD sufferers experience renal care differently, as they are more satisfied and face less obstacles with hemodialysis compared with those of Mexico. More studies on the topic are needed. (shrink)

Background Advance care planning (ACP) is a process in which adults engage in an ongoing dialogue about future medical treatment and care. Though ACP is recommended to improve the quality of end-of-life care, the details of the dialogue experience in ACP are unknown. Objective To explore participants’ experiences of dialogue in an ACP educational program that encouraged them to discuss the value of a way of life. Research design This qualitative descriptive study used the focus group (...) interview method. Data were analyzed using qualitative content analysis. Participants and research context A dialogue-based ACP educational program was conducted in four regions in Japan for local citizens to discuss the value of their way of life. A total of 66 individuals (mean age = 55.5 ± 17.2 years; 50 women and 16 men) participated in focus group interviews. Ethical considerations This study was approved by the Ethical Review Committee of Tokyo Women’s Medical University (no. 4723) and Kyoto University (no. R2099). Findings Five main themes were extracted: discussing one’s thoughts with others in a considerate manner, reflecting on one’s way of life through others, feeling a sense of connection with others through storytelling, realizing the difficulties of talking about “what if” topics, and turning one’s eyes toward the future through the dialogue. These themes were interrelated and illustrated the complexity of the experience of discussing values. Conclusions The results suggest that dialogue in ACP is useful in clarifying values. They also indicated the need for dealing with the ethical challenges of discussing value and the importance of caring for the interlocutor to have a safe dialogue. In the ACP process, safety in dialogue may improve readiness in ACP, and health practitioners who support ACP need to address the ethical challenges entailing dialogue about values. (shrink)

Assertive community treatment (ACT) is a widely propagated team approach to community mental health care that ‘assertively’ engages a subgroup of individuals with severe mental illness who continuously disengage from mental health services. It involves a number of interested parties – including clients, carers, clinicians and managers. Each operates according to perceived ethical principles related to their values, mores and principles. ACT condenses a dilemma that is common in psychiatry. ACT proffers social control whilst simultaneously holding therapeutic (...) aspiration. The clients’ perspective of this dilemma was studied in interviews with 12 clients using the ‘grounded theory’ approach. Results suggest that clients’ disengagement is as much a historical and cultural phenomenon as a result of lack of insight. Many clients had experienced rejection of early help–seeking behaviour and all had been subject to coercive interventions. These coercive interventions were experienced as an attack on identity. All felt that their voice had not been listened to in previous interactions with psychiatric services. Consequentially the clients had an increased level of arousal around issues of power, which needs to be incorporated when examining the ethics of community psychiatry. Traditional notions of the difference between persuasion and coercion – for example – may need to be adapted for this client group. Results are compared with the provider perspective. We conclude that the perspectives differ on two key dimensions. Such an empirical approach to examining psychiatric ethics may ensure that we incorporate the subjectivities of various interested parties in the clinical decision–making process. (shrink)

This article uses a reading of John Wesley's Primitive Physic, or An Easy and Natural Method of Curing Most Diseases (1747) to resist the common rejection—often as "quackery"—of Wesley's treatments for common maladies. We engage Wesley not because he was right but because his approach offers useful moments of pause in light of contemporary medical epistemology. Wesley's recommendations were primarily oriented towards the categories of personal responsibility and capability, but he also sought to empower individuals—especially the poor—with the knowledge (...) to safely and affordably treat maladies of their own. We leverage Primitive Physic to rethink contemporary medical knowledge production, especially as sanctioned by randomized clinical trials and legitimate views of experience and contemporary institutions such as the AMA. Ultimately, we suggest that the medical humanities has a key role to play in mining the discarded and dismissed for what they can tell scholars about medical knowledge. (shrink)

BackgroundWhen rationing health care, a commonly held view among ethicists is that there is no ethical difference between withdrawing or withholding medical treatments. In reality, this view does not generally seem to be supported by practicians nor in legislation practices, by for example adding a ‘grandfather clause’ when rejecting a new treatment for lacking cost-effectiveness. Due to this discrepancy, our objective was to explore physicians’ and patient organization representatives’ experiences- and perceptions of withdrawing and withholding treatments (...) in rationing situations of relative scarcity.MethodsFourteen semi-structured interviews were conducted in Sweden with physicians and patient organization representatives, thematic analysis was used.ResultsParticipants commonly express internally inconsistent views regarding if withdrawing or withholding medical treatments should be deemed as ethically equivalent. Participants express that in terms of patients’ need for treatment withholding and withdrawing should be deemed ethically equivalent. However, in terms of prognostic differences, and the patient-physician relation and communication, there is a clear discrepancy which carry a moral significance and ultimately makes withdrawing psychologically difficult for both physicians and patients, and politically difficult for policy makers.ConclusionsWe conclude that the distinction between withdrawing and withholding treatment as unified concepts is a simplification of a more complex situation, where different factors related differently to these two concepts. Following this, possible policy solutions are discussed for how to resolve this experienced moral difference by practitioners and ease withdrawing treatments due to health care rationing. Such solutions could be to have agreements between the physician and patient about potential future treatment withdrawals, to evaluate the treatment’s effect, and to provide guidelines on a national level. (shrink)

Background The aim was to explore how the clinical ethics committees in Norway have worked and functioned within mental health care and addiction treatment services. Methods Analysis of 256 annual reports from clinical ethics committees from 2003 to 2012 and a survey to clinicians who had used a clinical ethics committee. Results Dilemmas related to coercion, confidentiality, information, and patient autonomy dominated. The committees established only for psychiatric hospitals, had received more cases from mental health and addiction (...) services than the committees also serving somatic services. Many of the case discussions involved both somatic and mental health care, complicated legal issues as well as ethical dilemmas. Mental health care professionals that have used the clinical ethics committees evaluated the clinical ethics committees deliberation as useful. Conclusion Given the many difficult ethical dilemmas in mental health care ethics work need to be strengthened. The complexity of the cases requires varied and interdisciplinary competence and training among the clinical ethics committee members. (shrink)

In the Netherlands, Forensic Flexible Assertive Community Treatment is used as a specialized form of outpatient intensive treatment. This outreaching type of treatment is aimed at patients with severe and long lasting psychiatric problems that are at risk of engaging in criminal behavior. In addition, these patients often suffer from addiction and experience problems in different areas of their life. The aim of this exploratory study was to gain more insight into the characteristics of the ForFACT patient population. More (...) knowledge about these patients may enhance the effectiveness of ForFACT and therefore reduce the risk of recidivism. Data on 132 ForFACT patients were gathered by studying electronic patient records, criminal records, and by conducting semi-structured interviews with practitioners and patients. Additionally, as part of a cognitive screening, two screening instruments were conducted to gain insight into intelligence and possible mild cognitive impairments. This article gives a broad description of the ForFACT patient population, including demographic data and context variables, diagnostics, recidivism risk and offense history, and aspects related to care. Furthermore, several recommendations are given to further improve ForFACT. Based on the results it can be concluded that the ForFACT patient population shows a high degree of diversity in complex care needs and responsivity issues. Therefore, this article highlights the necessity for ForFACT to collaborate with other mental health institutions, as well as probation officers, and forensic or criminal justice institutions. Moreover, it is important to continually check the inclusion and exclusion criteria when admitting patients to ForFACT, and to examine whether ForFACT is still the most adequate care for patients or if they need to be referred. In addition, the results emphasize the importance of cognitive screening for forensic outpatients. Finally, this study zooms in on the interface between forensic psychiatric care and general mental health care. (shrink)

In _Psychoanalytic Therapy as Health Care_, a timely and trenchant consideration of the clash of values between managed care and psychoanalysis, contributors elaborate a thoughtful defense of the therapeutic necessity and social importance of contemporary psychoanalytic and psychodynamic approaches in the provision of mental health care. Part I begins with the question of where psychoanalytic treatments now stand in relation to health care; contributors offer explanations of the current state of affairs and consider (...) possible directions of future developments. Part II looks directly at the conundrums that have resulted from the attempt to integrate psychotherapy and managed care, with contributors examining the ethical and legal dimensions of confidentiality, privacy, and reporting to third parties. Part III opens to wider consideration of the experiences of psychoanalysts under health care systems throughout the world. Finally, Part IV demonstrates the relevance of contemporary psychoanalytic approaches to a variety of contemporary patient populations, with contributors focusing on the applicability of analytically oriented treatment to AIDS patients, seriously disturbed young adults, and inner-city clinic patients. Collectively, the contributors to _Psychoanalytic Therapy as Health Care_ convincingly refute the claim that psychoanalytically informed therapy is an esoteric treatment suited only to the "worried well." Drawing on a wide range of clinical and empirical evidence, they forcefully argue that contemporary psychoanalytic approaches are applicable to seriously distressed persons in a variety of treatment contexts. Failure to include such long-term therapies within health care delivery systems, they conclude, will deprive many patients of help they need - and help from which they can benefit in enduring ways that far transcend the limited treatment goals of managed care. (shrink)

Mental health problems start early in life. However, the majority of adolescents fulfilling the criteria for mental health disorders do not receive treatment, and half of those who do get treatment drop out. This begs the question of what differentiates helpful from unhelpful treatment processes from the perspective of young clients. In this study, we interviewed 12 young people who entered mental health care reluctantly at the initiative of others before the age of 18. Their journeys (...) through mental health care varied significantly despite sharing the same starting point. Our analyses resulted in a model of three trajectories. We describe relational and structural facilitators and obstacles within each trajectory and have formulated narratives highlighting core experiences differentiating them. Trajectory 1 was characterized by a rapid loss of hope, leading the adolescents to conclude that mental health care was not worth the investment. Trajectory 2 was characterized by a lingering hope that never materialized into a constructive therapeutic process despite prevailing efforts by both therapists and adolescents. Trajectory 3 was characterized by genuine meetings, allowing the therapist to transform from an unsafe stranger into a safe, competent, and benevolent adult. We discuss how our results have implications for understanding agency displayed by adolescent clients in therapy, therapist flexibility and authenticity, service organization, and attributional processes influencing clinical judgment and therapeutic processes when adolescent psychotherapy has a difficult starting point. (shrink)

This article seeks to show one way in which moral philosophy, considered by the authors to be essential to the nursing and midwifery curricula, can be presented to achieve an optimal learning experience for nurses and midwives. It demonstrates that what might be considered a standard approach, that is, one that begins with ethical principles concerned with rights and duties and then often follows a linear pattern of teaching, may be in danger of promoting a focus on standardized outcomes. (...) Such use of philosophy could therefore actually detract from the process of care. Moral philosophy underpinning health care ethics is commonly misperceived as a method of problem solving when there is an obvious dilemma regarding appropriate care and/or treatment. However, it is readily recognized that key principles within philosophy, for example, deontology and utilitarianism, despite their approach to a standard or criterion of right action, are both deficient in terms of providing ready-made right decisions. This is because their main virtue is to expose the difficulty rather than to solve the problem. Given these difficulties, any subsequent principles such as respect, beneficence, nonmaleficence and justice, incur the same deficiencies a fortiori. It can be argued that the complexity of the environment in which nurses and midwives now practice requires them to develop a capability that begins with the philosophical construction of an issue. This can subsequently enable a recognition of the essential nature of their own involvement as a nurse or midwife. By so doing, nurses and midwives can then bring issues into a nursing or midwifery paradigm and ensure that this perspective informs debate. Ultimately the focus is on the process by which care decisions are made. The intent therefore, is not simply for nurses or midwives to learn moral philosophy or to copy what is considered by others to be right action, but to recognize that a number of right actions are possible and, in so doing, develop their ability either to choose or influence a final action through a valid process. This article proposes and demonstrates by case example that what is often considered as a chance effect for nurses and midwives learning moral philosophy should be seen as the main effect and intended outcome. (shrink)

Inequities shape the everyday experiences and life chances of individuals at the margins of societies and are often associated with lower health and particular challenges in accessing quality treatment and support. This fact is even more dramatic for those individuals who live at the nexus of different marginalized groups and thus may face multiple discrimination, stigma, and oppression. To address these multiple social and structural disadvantages, intersectional approaches have recently gained a foothold, especially in the public health field. (...) This study makes an empirically informed argument for the merits of increasing the use of intersectional frameworks in the mental health field. In the mental health field, the potential for greater attention to multiple unjustified disadvantages appears to be of particular importance, as many mental health service users already face stigma and discrimination because of their mental health issues and thus may benefit particularly frequently and far-reachingly from effective problem awareness about multiple disadvantages. Intersectional approaches may help address the complexity, interdependence, and mutual constitution of social inequalities better than previous approaches that examined only one category of sociostructural stratification. By helping to identify the needs of those at the greatest risk of poor health, intersectional frameworks and tools can contribute not only to better address the needs of multiple disadvantaged individuals with mental health issues but also to the promotion of equity in the field of mental health, contributing to the reduction of health disparities. (shrink)

Background Ethical reasoning and sensitivity are always important in public health, but it is especially important in the sensitive and complex area of public health emergency preparedness. Here, we explored the ethical challenges, and dilemmas encountered by frontline health workers amid the coronavirus disease-19 (COVID-19) pandemic in Ethiopia. Methods A nationwide survey was conducted amongst the frontline health workers from nineteen public hospitals. Health workers were invited to respond to a self-administered questionnaire. Data were weighted (...) and analyzed using descriptive statistics. Results Of the 285 frontline health workers to whom questionnaires were distributed, 217 of them gave their responses (response rate 76.1%). Respondents frequently reported encountering rationing dilemmas on health commodities directly used for the prevention and treatment of COVID-19. Most (83.9%) of the health workers agreed that they encountered ethical challenges very frequently or frequently. Almost all [215(99.1%)] claimed that the limitation of resources was directly used for the treatment and prevention of COVID-19. The frequency of difficulty in the provision of essential clinical services varied between 77% and 98.7% for different services. More than half of the study participants reported that they had encountered difficulty in the provision of clinical care on a daily or weekly basis. Regarding rationing strategies, isolating COVID-19 treatment units and limiting admission were the most frequent rationing strategies used by two-thirds of health workers on a daily or weekly basis. Conclusion Front-line health workers encountered numerous ethically challenging situations during COVID-19. More than half of health workers reported that they encountered ethical challenges in rationing the resources and delivery of different clinical services such as family planning services, maternal and childcare, immunization, and chronic care. With limited resources such as ventilators and hospital beds, healthcare providers have been faced with the difficult task of deciding who gets access to these resources and who doesn't. Overall, the COVID-19 pandemic has presented numerous ethical challenges for healthcare providers, highlighting the importance of ethical considerations in healthcare delivery. By being aware of these dilemmas and having policies in place to address them, healthcare providers can ensure that they are providing the best possible care to their patients while upholding ethical standards. (shrink)

When health professionals experience moral distress during routine clinical practice, they are challenged to maintain integrity through conscientious practice guided by ethical principles and virtues that promote the dignity of all human beings who need care. Their integrity also needs preservation during a crisis like the COVID-19 pandemic, especially when faced with triage protocols that allocate scarce resources. Although a crisis may change our ability to provide life-saving treatment to all who need it, a crisis should not (...) change the ethical values that should always be guiding clinical care. Enduring ethical commitments should encourage clinicians to base treatment decisions on the medical needs of individual patients. This approach contrasts with utilitarian attempts to maximize selected aggregate outcomes by using scoring systems that use short-term and possibly long-term prognostic estimates to discriminate between patients and thereby treat them unequally in terms of their eligibility for life-sustaining treatment. During times of crisis and calm, moral communication allows clinicians to exercise moral agency and advocate for their individual patients, thereby demonstrating conscientious practice and resisting influences that may contribute to compartmentalization, moral injury, and burnout. (shrink)

Background and AimsEnd-of-life discussions can be difficult for seriously ill adolescents and young adults. Researchers aimed to determine whether completing Voicing My CHOiCES —a research-informed advance care planning guide—increased communication with family, friends, or health care providers, and to evaluate the experience of those with whom VMC was shared.MethodsFamily, friends, or HCPs who the AYAs had shared their completed VMC with were administered structured interviews to assess their perception of the ACP discussion, changes in their relationship, (...) conversation quality, and whether the discussion prompted changes in care. Open-ended responses underwent thematic analysis.ResultsOne-month post-completion, 65.1% of AYA had shared VMC completion with a family member, 22.6% with a friend, and 8.9% with an HCP. Among a sample of respondents, family and friends reported a positive change in their relationship with the AYA. Participant descriptions of the experience fell into five themes: positive experience, difficult experience, appreciated a guide to facilitate discussion, provided relief, and created worry/anxiety. Only 1 HCP noted a treatment change. Family, friends, and HCP did not think the AYA would have discussed EoL preferences without completing VMC.ConclusionsVMC has potential to enhance communication about ACP between AYA and their family and friends, though less frequently with HCPs. Participants reported a positive change in their relationship with the AYA after discussing VMC, and described experiencing the conversation as favorable, even when also emotionally difficult. (shrink)

Dignity is a human right and a base for human health. This right must be observed in work environments as a moral obligation. This qualitative study aimed to understand nurses’ experiences of violation of their dignity at work and to explore its dimensions. The participants were 15 nurses working in two hospitals in Tehran. The data were collected through 26 unstructured interviews and analyzed using content analysis. The dimensions of violation were ‘irreverence’, including experiences of abuse and violence, humiliation, (...) and being ignored; ‘coercion and violation of autonomy’, consisting of the control of relationships, lack of privacy, rigidness, and imposition; ‘ignoring professional and scientific ability’, indicating impossibilities in applying nurses’ knowledge; and ‘denying the value of nurse/care’, being the theme that verified the dominance of treatment/cure and lack of recognition of care value. Health systems should take the promotion of the nurses’ dignity into account through providing a dignified work environment. (shrink)

Dignity is a human right and a base for human health. This right must be observed in work environments as a moral obligation. This qualitative study aimed to understand nurses’ experiences of violation of their dignity at work and to explore its dimensions. The participants were 15 nurses working in two hospitals in Tehran. The data were collected through 26 unstructured interviews and analyzed using content analysis. The dimensions of violation were ‘irreverence’, including experiences of abuse and violence, humiliation, (...) and being ignored; ‘coercion and violation of autonomy’, consisting of the control of relationships, lack of privacy, rigidness, and imposition; ‘ignoring professional and scientific ability’, indicating impossibilities in applying nurses’ knowledge; and ‘denying the value of nurse/care’, being the theme that verified the dominance of treatment/cure and lack of recognition of care value. Health systems should take the promotion of the nurses’ dignity into account through providing a dignified work environment. (shrink)

Primary research on HIV/AIDS in India has predominantly focused on known risk groups such as sex workers, STI clinic attendees and long-distance truck drivers, and has largely been undertaken in urban areas. There is evidence of HIV spreading to rural areas but very little is known about the context of the infection or about issues relating to health and social impact on people living with HIV/AIDS. In-depth interviews with nineteen men and women infected with HIV who live in rural (...) areas were used to collect experiences of testing and treatment, the social impacts of living with HIV and differential impacts on women and men. Eight focus group discussions with groups drawn from the general population in the four villages were used to provide an analysis of community level views about HIV/AIDS. While men reported contracting HIV from sex workers in the cities, women considered their husbands to be the source of their infection. Correct knowledge about HIV transmission co-existed with misconceptions. Men and women tested for HIV reported inadequate counselling and sought treatment from traditional healers as well as professionals. Owing to the general pattern of husbands being the first to contract HIV women faced a substantial burden, with few resources remaining for their own or their children’s care after meeting the needs of sick husbands. Stigma and social isolation following widowhood were common, with an enforced return to the natal home. Implications for potential educational and service interventions are discussed within the context of gender and social relations. (shrink)

Despite changes to research and practice, that, to some degree, acknowledge that people are shaped by their contexts, the treatment of mental illness remains largely focused on interventions that take place at the level of the individual. Conceptualizing mental illness as something that resides in individuals can lead to reliance on neurobiological and psychotherapeutic solutions, and away from conversations about not only contextual causes of mental distress, but also sociopolitical solutions to mental distress. Further, it can lead to the use (...) of mental health interventions that focus on the biology of an individual without a consideration for how those interventions themselves may have psychological, social, or political consequences that act to shape an individual's identity, agency, and relationship to their community. This paper examines one medicolegal intervention, the community treatment order, using the philosophical work of Grosz and Foucault to consider how this intervention affects the experience and construction of identity, and the impact of this on an individual's sense of agential membership in a community. This discussion aims to increase understanding of the individual and social implications of interventions for mental illness, and provide a conceptualization of the relationship between identity, agency, and ethics which can inform critical research and nursing practice more broadly. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Medical Tourism:Crossing Borders to Access Health CareHarriet Hutson Gray (bio) and Susan Cartier Poland (bio)Traveling abroad for one's health has a long history for the upper social classes who sought spas, mineral baths, innovative therapies, and the fair climate of the Mediterranean as destinations to improve their health. The newest trend in the first decade of the twenty-first century has the middle class traveling from developed (...) countries to those with emerging economies to avoid treatment delays, prohibitive costs for life-saving procedures, or simply high costs for elective surgery. Others leave to have access to assisted suicide in countries that have legalized it: Belgium, The Netherlands, and Switzerland. This new era of globalization in health care has arrived without the benefit of international standards, government oversight, or ethical and legal review.Howard Staab, a self-employed carpenter from North Carolina, flew to India for his medically necessary heart surgery, scheduled a side trip to the Taj Mahal, and returned home to work in North Carolina. He spent a total of less than $10,000, instead of the $200,000 required from the local hospital (I, Milstein and Smith 2006).At first blush, the outsourcing of medical care to India seems to be a particular solution for a particular problem. However, the particularity of Mr. Staab is not unique. His experience is emblematic of those patients in the United States with a medical need for major and elective procedures, but who also must bear the total cost of these procedures. These middle-class, under-insured Americans go abroad.In tandem with increasingly aggressive marketing campaigns, American hospitals and companies have begun to leverage their connections in Asia to grow the medical tourism business into a major economic force. What are the consequences of this?Several authors point to the effect on the host country's population, particularly the poor, to be pushed farther down the queue to receive adequate, affordable care. Resources are applied to the foreign trade instead of building the local [End Page 193] medical infrastructure. Another potential problem is the obligation of the home-country physician to provide follow-up care. What are the legal ramifications when the procedure was illegal to begin with? Are there opportunities for redress for medical errors?These factors may be converging into a "perfect storm" for health care in the U.S., in which the potential participation of the major insurance companies in promoting offshore care will be the tipping point in the precarious structure that represents the economic currents in health care. Third-party administrators and self-funded employers may be on the cutting edge in 2009 by providing incentives to employees to travel overseas for care.I. Economic ConsiderationsConnell, John. Medical Tourism: Sea, Sun, Sand and... Surgery. Tourism Management 27: 1093–1100, 2006.As evidence of the interest of traditional tour operators in this newer twist on the industry, the author explores medical tourism as an element of the growth of world tourism. In promoting medical tourism, he urges consideration of such issues as the privatization of health care, the foundational role of technology, and uneven access to health resources.Dunn, Philip. Medical Tourism Takes Flight. H and HN: Hospitals and Health Networks: 40–44, November 2007.Writing for U.S. health care executives, Dunn emphasizes that the reality of medical tourism competes with the local medical center for patients and their insurance dollars in a significant way. He examines the possibility that U.S. insurance plans soon may offer to pay for what is currently a cash only business and that the economic impact to the local medical center could be significant or even devastating.Frontiers of Health Services Management [Selected Articles] 24 (2), Winter 2007.In "Managing Healthcare Services in the Global Marketplace" (pp. 3–18), Bruce J. Fried and Dean M. Harris consider legal, ethical, and financial implications of the international workforce. In "Globalization of Health Care" (pp. 19–30), Lynn Schroth and Ruthy Khawahja point out that the transfer of comprehensive management expertise and intellectual property from U.S. medical centers to international sites is driving the success of collaboration between U.S. and foreign health care centers. In "Is... (shrink)

Older minority Americans experience worse health outcomes than their white counterparts, exhibiting the need for social justice in all areas of their health care. Justice, fairness, and equity are crucial to minimizing conditions that adversely affect the health of individuals and communities. In this paper, Alzheimer's disease (AD) is used as an example of a health care disparity among elderly Americans that requires social justice interventions. Cultural factors play a crucial role in AD (...) screening, diagnosis, and access to care, and are often a barrier to support and equality for minority communities. The “conundrum of health disparities” refers to the interplay between disparity, social justice, and cultural interpretation, and encourages researchers to understand both (1) disparity caused by economic and structural barriers to access, treatment, and diagnosis, and (2) disparity due to cultural interpretation of disease, in order to effectively address health care issues and concerns among elderly Americans. (shrink)

In this paper, we discuss challenges associated with implementing a policy for Ancillary Care (AC) for related and unrelated (serious) adverse events during an Ebola vaccine trial conducted in a remote area of the Democratic Republic of the Congo. Conducting clinical trials in resourceconstrained settings can raise context-related challenges that have implications for study participants’ health and wellbeing. During the Ebola vaccine study, three participants were injured in road traffic accidents, but there were unexpected difficulties when trying to (...) apply the AC policy. First, because of the nature of the adverse events, the insurer refused to cover the costs. Second, the AC policy did not address treatments by traditional medicine, even though traditional medicines are frequently used and highly trusted in the study community. This highlighted a contrast between the researchers’ well-intentioned AC approach and the participants’ legitimate preferences. The way in which researchers should address their responsibility to provide AC is not straightforward; it requires contextualization. Our experience highlights the importance of involving community representatives and the local ethics committee to ensure development of an AC policy that is culturally and ethically appropriate. Additionally, the insurance contract should clearly stipulate which adverse events are linked to the trial participation, and thus eligible for coverage, to avoid controversies when claims are made. (shrink)

BackgroundNorway has extensive and detailed legal requirements and guidelines concerning involvement of next of kin during involuntary hospital treatment of seriously mentally ill patients. However, we have little knowledge about what happens in practice. This study explores NOK’s views and experiences of involvement during involuntary hospitalisation in Norway.MethodsWe performed qualitative interviews-focus groups and individual-with 36 adult NOK to adults and adolescents who had been involuntarily admitted once or several times. The semi-structured interview guide included questions on experiences with and views (...) on involvement during serious mental illness and coercion.ResultsMost of the NOK were heavily involved in the patient’s life and illness. Their conceptions of involvement during mental illness and coercion, included many important aspects adding to the traditional focus on substitute decision-making. The overall impression was, with a few exceptions, that the NOK had experienced lack of involvement or had negative experiences as NOK in their encounters with the health services. Not being seen and acknowledged as important caregivers and co sufferers were experienced as offensive and could add to their feelings of guilt. Lack of involvement had as a consequence that vital patient information which the NOK possessed was not shared with the patient’s therapists.ConclusionsDespite public initiatives to improve the involvement of NOK, the NOK in our study felt neglected, unappreciated and dismissed. The paper discusses possible reasons for the gap between public policies and practice which deserve more attention: 1. A strong and not always correct focus on legal matters. 2. Little emphasis on the role of NOK in professional ethics. 3. The organisation of health services and resource constraints. 4. A conservative culture regarding the role of next of kin in mental health care. Acknowledging these reasons may be helpful to understand deficient involvement of the NOK in voluntary mental health services. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Subjective Experiences of Tourette SyndromeBeyond the Premonitory UrgeThe authors report no conflicts of interest.There is an evolving recognition in healthcare that the patient's subjective experience needs to be privileged both in understanding clinical phenomena and also ensuring the salience of outcomes used to evaluate the impact of treatment interventions. This is reflected in the expansion of patient-reported outcome measures to capture a person's perception of their own (...) class='Hi'>health, and the increasing requirement of involving people with lived experience in the co-design of research studies (National Health and Medical Research Council, 2016) and care improvement initiatives. In mental health it has been long understood that observable behavioral phenomena can only partially inform clinical understanding of the experience of the patient living with the condition. However, capturing the patient's subjective experience faithfully remains a challenge.Tourette syndrome (TS) is a complex condition in which there are clearly observable behavioral phenomena (vocal and motor tics, compulsive and socially inappropriate behaviors), but also a broad and varied range of subjective phenomena reported by different individuals. These may include sensory phenomena such as the premonitory sensory urge preceding a tic, compulsions to touch things a certain number of times or do something repeatedly until it feels "just right," or bothersome intrusive thoughts or images. To further complicate the picture most patients with TS have one or more co-occurring conditions such as attention deficit hyperactivity disorder, obsessive-compulsive disorder, and anxiety, which may actually cause a greater burden of dysfunction and distress than the Tourette symptoms.In their paper, Curtis-Wendlandt et al. (2024) challenge the dependence of current psychiatric diagnostic criteria (e.g., the Diagnostic and Statistical Manual of Mental Disorders, 5th edition) on observable tics, and propose a broader and more dimensional approach to nosology which incorporates sensory, cognitive and affective phenomena. [End Page 47] Data from interviews they conducted identified that premonitory phenomena and urge experiences in tic disorders are more complex and diverse than what is currently reflected in the literature and clinical scales. They also interviewed participants who reported "no urges" or "no premonitory sensations." They commented that the literature generally treats reports of urge absences at face value, and does not address the likelihood that such reports may be ambiguous or problematic. Overall, they concluded that their research suggests that premonitory urges in TS are a complex and diverse phenomenon that requires further study. This reflects with our clinical experience in working with TS patients. Although a large proportion of older patients describe sensory-based premonitory urges, descriptions are not homogenous, with many describing other experiences preceding their tics.When evaluating a patient's response to an intervention (either behavioral or pharmacological) clinicians incorporate a range of information. This includes the severity of their tics (number, type, frequency, intensity, and associated impairment), as well as their mood, participation and performance in study, work, and social activities, and overall quality of life. Standard clinical practice would not typically include assessment of some of the subjective experiences which precede tics. If it was accepted that these subjective phenomena are indeed salient to the patient's well-being, then a challenge would be how to consistently and reliably capture these feelings to operationalize a comprehensive patient-centered assessment.The primary evidence-based treatment for tic disorders, comprehensive behavioral intervention for tics (CBIT), involves training to increase the awareness of premonitory urges (Woods et al., 2008). Furthermore, successful 'blocking' of tics during the course of CBIT requires the patient to be aware of premonitory urges. Clinicians having a better understanding of the complexity and diversity of experiences which precede tics, as well as using open-ended questioning styles, may assist with improving CBIT outcomes. [End Page 48]Related ArticlesFeature Article: Dimensions, Not Types: On the Phenomenology of Premonitory Urges in Tourette SyndromeCommentary: Priming and Narrative Habits in the Phenomenological Interview: Reflections on a Study of Tourette SyndromeCommentary: Subjective Experiences of Tourette Syndrome: Beyond the Premonitory UrgeResponse: Phenomenological Interviews and Tourette’sDaryl EfronThe Royal Children's Hospital MelbourneIvan MathiesonThe Laneway ClinicDaryl Efron Daryl Efron is a Consultant Pediatrician, Royal Children's Hospital Senior Research Fellow, Murdoch... (shrink)

Introduction:Prehospital emergency medicine is a specific field of emergency medicine. The basic approach of prehospital emergency medicine is to provide patients with medical intervention at the scene of the incident. This special environment causes health professionals to encounter various problems. One of the most important problems in this field is ethics, in particular questions involving refusal of treatment and the processes associated with it.Objective:The objective of this study is to identify emergency health professionals’ views regarding refusal of treatment.Methods:This (...) study was conducted with 356 health professionals who were on active duty in prehospital emergency health services. The data were collected through a form which included 10 statements. The participants were asked to indicate their level of agreement with the statements given by rating them between 0 and 10.Ethical considerations:Before conducting the research, permission was received from the local ethics committee. Participants were given written information about the purpose of the study. Participants were assured that their participation was voluntary.Results:The healthcare professionals with fewer years of experience in the profession and female participants adopted an attitude of giving priority to providing care. Young participants, in general, respected patient autonomy. However, paradoxically, when it comes to emergency medical cases, they expressed an opinion closer to paternalism.Conclusions:This study has found that prehospital emergency health professionals generally respect the patient’s right to refuse treatment; however, they do not prioritize this right when there is a life-threatening situation or when the person does not have decision-making capacity. In these cases, prehospital emergency health professionals tended to adopt a more paternalistic approach. (shrink)

Should organ transplants be given to patients who have waited the longest, or need it most urgently, or those whose survival prospects are the best? The rationing of health care is universal and inevitable, taking place in poor and affluent countries, in publicly funded and private health care systems. Someone must budget for as well as dispense health care whilst aging populations severely stretch the availability of resources. The Ethics of Health Care (...) Rationing is a clear and much-needed introduction to this increasingly important topic, considering and assessing the major ethical problems and dilemmas about the allocation, scarcity and rationing of health care. Beginning with a helpful overview of why rationing is an ethical problem, the authors examine the following key topics: What is the value of health? How can it be measured? What does it mean that a treatment is "good value for money"? What sort of distributive principles - utilitarian, egalitarian or prioritarian - should we rely on when thinking about health care rationing? Does rationing health care unfairly discriminate against the elderly and people with disabilities? Should patients be held responsible for their health? Why does the debate on responsibility for health lead to issues about socioeconomic status and social inequality? Throughout the book, examples from the US, UK and other countries are used to illustrate the ethical issues at stake. Additional features such as chapter summaries, annotated further reading and discussion questions make this an ideal starting point for students new to the subject, not only in philosophy but also in closely related fields such as politics, health economics, public health, medicine, nursing and social work. (shrink)

Between 2013 and 2016, West Africa experienced the largest ever outbreak of Ebola Virus Disease. In the absence of registered treatments or vaccines to control this lethal disease, the World Health Organization coordinated and supported research to expedite identification of interventions that could control the outbreak and improve future control efforts. Consequently, the World Health Organization Research Ethics Review Committee was heavily involved in reviews and ethics discussions. It reviewed 24 new and 22 amended protocols for research (...) studies including interventional and observational studies. WHO-ERC provided the reviews within on average 6 working days. The WHO-ERC often could not provide immediate approval of protocols for reasons which were not Ebola Virus Disease specific but related to protocol inconsistencies, missing information and complex informed consents. WHO-ERC considerations on Ebola Virus Disease specific issues are presented. To accelerate study approval in future public health emergencies, we recommend: internally consistent and complete submissions with information documents in language participants are likely to understand, close collaboration between local and international researchers from research inception, generation of template agreements for data and sample sharing and use during the ongoing global consultations on bio-banks, formation of Joint Scientific Advisory and Data Safety Review Committees for all studies linked to a particular intervention or group of interventions, formation of a Joint Ethics Review Committee with representatives of the Ethics Committees of all institutions and countries involved to strengthen reviews through the different perspectives provided without the ‘opportunity costs’ for time to final approval of multiple, independent reviews, direct information exchange between the chairs of advisory, safety review and ethics committees, more Ethics Committee support for investigators than is standard and a global consultation on criteria for inclusion of pregnant women and children in interventional studies for conditions which put them at particularly high risk of mortality or other irreversible adverse outcomes under standard-of-care. (shrink)

Narrative analysis is well established as a means of examining the subjective experience of those who suffer chronic illness and cancer. In a study of perceptions of the outcomes of treatment of cancer of the colon, we have been struck by the consistency with which patients record three particular observations of their subjective experience: the immediate impact of the cancer diagnosis and a persisting identification as a cancer patient, regardless of the time since treatment and of the presence (...) or absence of persistent or recurrent disease; a state of variable alienation from social familiars, expressed as an inability to communicate the nature of the experience of the illness, its diagnosis and treatment; and a persistent sense of boundedness, an awareness of limits to space, empowerment and available time. These subjectivities were experienced in varying degree by all patients in our study. Individual responses to these experiences were complex and variable. The experiences are best understood under the rubric of a category we call “liminality”. We believe that all cancer patients enter and experience liminality as a process which begins with the first manifestations of their malignancy. An initial acute phase of liminality is marked by disorientation, a sense of loss and of loss of control, and a sense of uncertainty. An adaptive, enduring phase of suspended liminality supervenes, in which each patient constructs and reconstructs meaning for their experience by means of narrative. This phase persists, probably for the rest of the cancer patient’s life. The experience of liminality is firmly grounded in the changing and experiencing body that houses both the disease and the self. Insights into the nature of the experience can be gained from the Existentialist philosophers and from the history of attitudes to death. Understanding liminality helps us to understand what it is that patients with cancer seek from the system to which they turn for help. Its explication should therefore be important for those who provide health care, those who educate health care workers and those concerned to study and use outcomes as administrative and policy making instruments. (shrink)

It is rare to find honest accounts of the difficulties and dilemmas encountered when conducting sensitive research with vulnerable research populations. This account explores some of the ethical issues raised by a qualitative interview study with lesbians and gay men about their experiences of nursing care. There is tension between the moral duty to conduct research with vulnerable and stigmatized groups in order to improve care, and the inevitable lack of resources that go with such a venture. This (...) increases the risk of harm during the process of research. The risk of harm to both the researchers and the researched is explored and the need for a support structure for both groups is raised. There is a pressing need to develop further understanding about the ways in which the dissemination of research can potentially harm already vulnerable research populations. (shrink)

Once a term used primarily by moral philosophers, “moral distress” is increasingly used by health professionals to name experiences of frustration and failure in fulfilling moral obligations inherent to their fiduciary relationship with the public. Although such challenges have always been present, as has discord regarding the right thing to do in particular situations, there is a radical change in the degree and intensity of moral distress being expressed. Has the plight of professionals in healthcare practice changed? “Plight” encompasses (...) not only the act of pledging, but that of predicament and peril. The author claims that health professionals are increasingly put in peril by healthcare reform that undermines their efficacy and jeopardizes ethical engagement with those in their care. The re-engineering of healthcare to give precedence to corporate and commercial values and strategies of commodification, service rationing, streamlining, and measuring of “efficiency,” is literally demoralizing health professionals. Healthcare practice needs to be grounded in a capacity for compassion and empathy, as is evident in standards of practice and codes of ethics, and in the understanding of what it means to be a professional. Such grounding allows for humane response to the availability of unprecedented advances in biotechnological treatments, for genuine dialogue and the raising of difficult, necessary ethical questions, and for the mutual support of health professionals themselves. If healthcare environments are not understood as moral communities but rather as simulated marketplaces, then health professionals’ moral agency is diminished and their vulnerability to moral distress is exacerbated. Research in moral distress and relational ethics is used to support this claim. (shrink)

Treating patients and their family members with respect and dignity is a broadly accepted goal of health care. The work presented in this article is part of a larger project aimed at better understanding what constitutes treatment with respect and dignity in the ICU to improve the care that patients and family members receive in this regard. Direct observation was selected as one of the methods to facilitate this understanding because it provides the opportunity to see and (...) document what actually occurs during encounters among patients, their families, and clinicians. This article reports seven major thematic domains and many subthemes that together create a detailed account of the interpersonal and environmental components of treatment with respect and dignity. Attention to these components might enhance the experience and treatment of patients and family members. (shrink)

Background Between 2013 and 2016, West Africa experienced the largest ever outbreak of Ebola Virus Disease. In the absence of registered treatments or vaccines to control this lethal disease, the World Health Organization coordinated and supported research to expedite identification of interventions that could control the outbreak and improve future control efforts. Consequently, the World Health Organization Research Ethics Review Committee was heavily involved in reviews and ethics discussions. It reviewed 24 new and 22 amended protocols for (...) research studies including interventional and observational studies. WHO-ERC reviews WHO-ERC provided the reviews within on average 6 working days. The WHO-ERC often could not provide immediate approval of protocols for reasons which were not Ebola Virus Disease specific but related to protocol inconsistencies, missing information and complex informed consents. WHO-ERC considerations on Ebola Virus Disease specific issues are presented. Conclusions To accelerate study approval in future public health emergencies, we recommend: internally consistent and complete submissions with information documents in language participants are likely to understand, close collaboration between local and international researchers from research inception, generation of template agreements for data and sample sharing and use during the ongoing global consultations on bio-banks, formation of Joint Scientific Advisory and Data Safety Review Committees for all studies linked to a particular intervention or group of interventions, formation of a Joint Ethics Review Committee with representatives of the Ethics Committees of all institutions and countries involved to strengthen reviews through the different perspectives provided without the ‘opportunity costs’ for time to final approval of multiple, independent reviews, direct information exchange between the chairs of advisory, safety review and ethics committees, more Ethics Committee support for investigators than is standard and a global consultation on criteria for inclusion of pregnant women and children in interventional studies for conditions which put them at particularly high risk of mortality or other irreversible adverse outcomes under standard-of-care. (shrink)

The Tuskegee Syphilis Experiment (TSE) has shaped African Americans’ views of the American health care system, contributing to a reluctance to participate in biomedical research and a suspicion of the medical system. This essay examines public discourses surrounding President Clinton’s attempt to restore African Americans’ trust by apologizing for the TSE. Through a narrative reading, we illustrate the failure of this text as an attempt to reconcile the United States Public Health Service and the African American public. (...) We conclude by noting the limitations of rhetoric when equal prominence is not given to policy proposals in national apologies. (shrink)

The impact of domestic violence and abuse is far reaching not least in terms of both the immediate and longer term physical and mental wellbeing of those who have experienced abuse. DVA also exerts a considerable detrimental impact on the wider family including children. While professional perspectives of working with DVA survivors is increasingly well documented, there remains a paucity of accounts of encounters with healthcare services and/or healthcare professionals from survivors of DVA themselves. A central aim of this study (...) was the exploration of women’s experiences of healthcare encounters told purely as personal narrative rather than framed in more traditional research terms. The focus of this paper therefore is unedited personal stories of encounters with healthcare professionals. The position of narrative as research method and the presentation of narratives in this particular instance are also considered. (shrink)

While there has been a vast amount of research on breast cancer in recent years, areas within this domain remain unexplored. For instance, there have been few attempts to marry an understanding of the social context in which breast cancer occurs with an understanding of subjective experiences of this condition. The purpose of this study was to explore women's experiences of embodiment after breast cancer, utilizing a phenomenological approach rooted in a feminist perspective. The focus of this article is upon (...) the changes to embodiment that are long‐term. Twelve women were interviewed on two occasions each and were asked to talk about changes to their bodies that occurred as a result of breast cancer. Three key themes were identified: (1) how it feels (e.g. sensation and breast loss); (2) managing appearances (e.g. wearing prostheses); and (3) treatments without end (e.g. menopause). The findings of this study show that women with breast cancer are a diverse group and that survivorship is a dynamic, life‐long process, which suggests that health professionals can play an important role in establishing interdisciplinary approaches to caring, beyond the conclusion of acute treatment. (shrink)

Recent estimates indicate that over 40,000 children die annually in the United States and a majority have life-limiting conditions. Children at end of life require extensive healthcare resources, including multiple hospital readmissions and emergency room visits. Yet, many children still suffer from symptoms at end of life—including fatigue, pain, dyspnea, and anxiety—with less than 10% of these children utilizing hospice care services. A critical barrier to pediatric hospice use was the original federal regulations associated with the hospice care (...) that required a diagnosis of 6 months to live and the discontinuation of all curative treatments. The Concurrent Care Provision of the United States’ Affordable Care Act eliminated the need to forgo curative therapies in order to enroll in hospice for children in Medicaid or Children’s Health Insurance Program. Concurrent care for children can help mitigate the tension families experience in choosing between essential forms of care, as well as contribute to improved end-of-life outcomes for the child and possibly bereavement outcomes for the family. Understanding concurrent care for children from a social justice perspective has important advocacy and research implications for hospice and palliative care clinicians providing care for children and their families. We apply Powers and Faden’s theory of social justice “as the moral foundation of public health and health policy” to the provision of concurrent care to children near end of life and families in the United States. The goals of applying this theory are to explore additional insights and perspectives into concurrent care policy may provide and to assess the usefulness of this theory when applied to end-of-life health policy. We argue that concurrent care policy is socially just since it has potential to promote well-being in vulnerable children and families and can limit the inequity children at end-of-life experience in access to high-quality hospice care. (shrink)

Experiences of moral distress encountered in psychiatric practice were explored in a hermeneutic phenomenological study. Moral distress is the state experienced when moral choices and actions are thwarted by constraints. Psychiatrists describe struggling ‘to do the right thing’ for individual patients within a societal system that places unrealistic demands on psychiatric expertise. Certainty on the part of the psychiatrist is an expectation when judgments of dangerousness and/or the need for coercive treatments are made. This assumption, however, ignores the uncertainty (...) and complexity of reality. Society entrusts psychiatrists to care for and treat those among its most vulnerable members: persons deemed to have a severely diminished capacity for autonomy due to a mental disorder. Simultaneously, psychiatrists are held accountable by society for the protection of the public. Moral distress arose for psychiatrists in their efforts to fulfill both roles. They described an ‘outsider/insider’ status and the ways in which they attempted to cope with moral distress. (shrink)

This book takes Edmund Husserl's phenomenology and applies it to help psychotherapy practitioners formulate complex psychological problems. The reader will learn about Husserl's system of understanding and its concepts that point to first-person lived experience, and about the work of Husserl scholars who have developed a way to be precise about the experiences that clients have. Through exploring the connection between academic philosophy of consciousness and mental health, themes of biopsychosocial treatment planning, psychopathology of personality and psychological disorders, (...) and the treatment of complex psychological problems become clear. The author shows that Husserlian phenomenology can be used in the design of interventions for clients in a process called formulation. Once the intentionality of consciousness is understood, by asking simple questions, it becomes possible to define problematic experiences. This is a means of creating informed consent for treatment and it makes it clear to clients what is happening for them, so helping them understand themselves and how they see the world. We also see how Husserl's phenomenology is a vehicle for psychotherapists to present their knowledge about the research literature of what has been found to be effective care. This volume applies the concepts and practices of phenomenology in a concrete way, relating them to the practice of therapy and showing the value of a qualitative approach to understanding mental processes and the nature of human beings as motivated by values, meanings and other conscious experiences. This is a readable text in simple language that condenses key aspects of Husserl's thinking in relation to the theory and practice of psychotherapy, and it is suitable for philosophers and practitioners of psychology, psychiatry, and the psychotherapies, including psychoanalysis. (shrink)

BackgroundAll hospital trusts in Norway have clinical ethics committees. Some of them invite next of kin/patients to be present during the discussion of their case. This study looks closer at how parents of seriously ill children have experienced being involved in CEC discussions.MethodsTen next of kin of six seriously ill children were interviewed. Their cases were discussed in two CECs between April of 2011 and March of 2014. The main ethical dilemma was limitation of life-prolonging treatment. Health care (...) personnel who could elucidate the case were also present in the discussion. The interviewer observed each discussion and then interviewed the next of kin shortly after the meeting, following a structured interview guide.ResultsAll next of kin emphasized that it had been important for them to be present. They stressed the important role of the CEC chair and appreciated that their case was discussed in a systematic way. Some next of kin appreciated that the child’s impending death was discussed openly, and believed that this would facilitate their future grieving. Having had an opportunity to hear all the arguments behind the decision to be made would probably help them to accept the road ahead.All of them felt that they were taken seriously and listened to. They felt that they had added vital information to the discussion. All but one couple did not want any decision-making responsibility, some of them even worried that they might have influenced the discussion too much.ConclusionsNone of the next of kin felt that being present during the CEC discussion had been too heavy a burden. On the contrary, they claimed that their presence in a CEC discussion may add vital information to the discussion and may improve the quality of the decision. It is important that the CEC’s role is explained to them so they are well prepared for what to expect. They need to be followed up after the discussion. (shrink)

Introduction Intensive care units are contexts in which, due to the remarkable existence of particularly technological resources, interventions are promoted to extend the life of people who experience highly complex health situations. This ability can lead to a culture of death denial where the possibility of implementing futile care and treatment cannot be excluded. Objective To describe nurses’ perceptions of adult intensive care units regarding the therapeutic futility of interventions implemented to persons in critical (...) class='Hi'>health conditions. Method Review of the literature following the Scoping Review protocol of the Joanna Briggs Institute. The Population, Concept, and Context mnemonic was used to elaborate the research question and the research was performed using the EBSCOHost search engine in the CINAHL Complete databases, MEDLINE Complete, Cochrane Central Register of Controlled Trials, and Cochrane Database of Systematic Reviews to identify studies published between 1990 and 2019. Seven studies were selected. Results Nurses consider that therapeutic futility, a current problem in adult intensive care units, may have a negative impact on persons in critical health conditions and that contributes directly to resource expenditure and moral conflicts and consequently leads to emotional exhaustion. Conclusion Due to the complexity of this concept, knowing and understanding people’s and families’ perceptions is crucial to the decision-making process, for which reason nurses can play a key role in managing these situations. (shrink)