Hospital ethics committees have evolved as a response to complicated legal, ethical, and social dilemmas that accompany modern medicine. In the United States, their growth has been augmented by Joint Commission for the Accreditation of Healthcare Organizations standards and the Patient Self-Determination Act. There appears to be an implicit presumption that all clinical ethics consultation practices are relatively similar. Finally, there is heightened awareness of the needs for quality standards and assessment of the outcomes of ethics consultations.

Cook and Hoas (2008) have identified and illustrated serious shortcomings in rural bioethics and healthcare decision-making. Some of the problems that the authors discuss are unique to the rural co...

Ethical perspectives on regional, rural, and remote healthcare often, understandably and importantly, focus on inequities in access to services. In this commentary, we take the opportunity to examine the implications of normalizing metrocentric views, values, knowledge, and orientations, evidenced by the recent (2022) New South Wales inquiry into health outcomes and access to hospital and health services in regional, rural and remote New South Wales, for contemporary rural governance and justice debates. To do this, we draw on (...) the feminist inspired approach to rural health ethics involving analysis of power relationships developed by Simpson and McDonald and related ideas from critical health sociology. In presenting this analysis, we extend contemporary thought about spatial health inequities and structural violence. (shrink)

The purpose of this study was to assess the presence of ethics committees in rural critical access hospitals across the United States. Several studies have investigated the presence of ethics committees in rural health care facilities. The limitation of these studies is in the definition of ‘rural hospital’ and a regional or state focus. These limitations have created large variations in the study findings. In this nation-wide study we used the criteria of a critical access hospital (...) (CAH), as defined by the Medicare Rural Hospital Flexibility Program (Flex Program, 2007), to bring consistency and clarity to the assessment of the presence of ethics committees in rural hospitals. The Flex Monitoring Team conducted a national telephone survey of 381 CAH administrators throughout the United States. The survey covered a wide variety of questions concerning hospitals’ community benefit, impact activities, and whether the hospital had a formally established an ethics committee. About 230 (60%) of the respondents indicated they had a formally established ethics committee or ethics consultation program at their CAH. The prevalence of ethics committees declined as the CAH location became increasingly rural along a rural–urban continuum. Unlike CAHs, all rural Department of Veterans Affairs Medical Centers have ethics committees. The results of this study provide an understanding of the limited presence of ethics committee in rural America and the need to consider new approaches for providing ethics assistance. A virtual ethics committee network may be the most efficient and effective way of providing rural hospitals access to a knowledgeable ethics committee or consultant. (shrink)

This paper examines older people’s access to care experiences in rural China by integrating anthropological investigation with ethical inquiry. Six months of fieldwork in a post-reform primary hospital show how rural residents struggle to access gerontological and nursing care under socially disadvantageous conditions. This anthropological investigation highlights the unmet needs in medical and nursing care for older people, as well as some social, institutional and structural elements that impede access to care. Centring on protecting the vulnerable as informed (...) by feminist ethics scholarship, this paper argues that the failure to meet older people’s dependency needs is unjust, on the premise that it suggests a denial of the inherent value, rights and dignity of older people. This paper appeals for the provision of greater care and support by the state through putting in place social arrangements that better advance older people’s access to care. Some policy recommendations concerning health and social care reform for older people in rural China are also proposed. (shrink)

MACKINNON K. Nursing Inquiry 2012; 19: 259–269 We cannot staff for ‘what ifs’: the social organization of rural nurses’ safeguarding workRural nurses play an important role in the provision of maternity care for Canadian women. This care is an important part of how rural nurses safeguard the patients who receive care in small rural hospitals. This study utilized institutional ethnography as an approach for describing rural nursing work and for exploring how nurses’ work experiences are (...) socially organized. Rural nurses advocated for safe healthcare environments by ensuring that skilled nurses were available for every shift, day and night, at their local hospital. Rural nurses noted that this work was particularly difficult for the provision of maternity care. This article explores two threads or cues to institutional organization that were identified in our interviews and observations; namely staffing and safety standards, and the need for flexibility in staffing in small rural hospitals. Rural nurses’ concerns about ensuring that skilled nurses are available in small rural hospitals do not enter into current management discourses that focus on efficiency and cost savings or find a home within current discourses of patient safety ‘competencies’. (shrink)

A few weeks ago, a rural hospital administrator phoned with a question posed by his management team. “If you were going to give us some ethics resources,” he queried, “just exactly what would they...

The collective monograph «Determinants of Innovation and Investment Development of Multisectoral Entrepreneurship, Tourism and Hospitality Industry» is devoted to the 20th anniversary of the Educational and Scientific Institute of Economics and Law of Cherkasy Bohdan Khmelnytsky National University and is a continuation of the research tradition on the development of entrepreneurship, innovation, finance, competition, accounting and auditing problems, tourism, hotel and restaurant business. The results of the scientific research presented in the collective monograph show the achievements of the representatives of (...) various scientific schools, allow analyzing the experience gained and, considering current economic and political realities, contribute to the scientific substantiation of the prospects for the development of entrepreneurship, tourism industry, hotel and restaurant economy, enrich the intellectual potential of higher schools. The topics of sections and subsections identify the problem issues of innovation, investment and information technology in entrepreneurship, consider the competitive environment in the field of entrepreneurship, investigate the financial-economic and social problems, various directions of tourism industry development, declared by the World Economic Forum jointly with the World Tourism Organization (UN WTO). Particular attention is paid to the development of new trends in the hotel and restaurant business. A common task for scientists, educators, and employers in the conditions of international environmental instability is the formation and dissemination of new knowledge to achieve ambitious goals concerning the entrepreneurship development of tourism, hotel and restaurant business. The proposed discussion of current issues, experience and recommendation exchange will contribute to problem solving, research intensifying in the specified areas of activity. An important component of the modern economics is entrepreneurship; and the intensification of entrepreneurial activity should ensure overcoming of economic crises and their social and economic consequences, and determine the dynamic progress of a society and future welfare of people. It is entrepreneurship that is considered in many economically developed countries as a defining condition for a social and economic prosperity. Entrepreneurial activity involves all branches of economy including industrial, humanitarian and service areas. Therefore, it is necessary to study the key factors for the development of entrepreneurial activity in Ukraine. The current problems of entrepreneurship, tourism, hotel and restaurant business are extensively investigated by both domestic and foreign scholars. A number of researches focuses on these problems. Without diminishing the importance of their contribution to science, the need for further research and improvement should be noted. Therefore, in the monograph, special attention is paid to the state support of business structures, the regulation mechanisms of entrepreneurship, tourism, hotel and restaurant business, social sphere and interaction of market and state institutions, etc. The research was carried out using the developed scientifically substantiated methodological approaches based on the scientific developments of leading foreign and domestic scientists, which allowed proposing the specific directions of entrepreneurship development in the fields of economy, tourism, hotel and restaurant business. The unique nature of the monograph is not only its scientific significance, but also its practical application; since the substantiated positions, measures, proposals for the further transformation of economic processes in Ukraine and in the world have practical value. (shrink)

Objective: To determine whether bioethicists are distributed along a rural-to-urban continuum in a way that reflects potential need of those resources as determined by the general population, hospital facilities and hospital beds.Methods: US members of a large, multidisciplinary professional society, the American Society of Bioethics and Humanities , the US population, hospital facilities and hospital beds were classified across a four-tier rural-to-urban continuum. The proportion of each group in rural settings was compared with that in urban settings, (...) and odds ratios were calculated with 95% confidence intervals.Results: Although 91% of ASBH members live or work in urban settings, only 66% of the US population did so. In contrast, 2% of ASBH members live or work in rural settings compared with 13% of the population. ASBH members were 10.7 times as likely to be represented in urban than in rural settings when compared with the general population, 25.6 times and 6.9 times as likely with regard to hospital facilities and hospital beds, respectively.Conclusions: Using various comparisons it was found that ASBH members are under-represented in rural as compared with urban settings. Although not all bioethicists are ASBH members, these findings suggest that the availability of professional bioethical resources may be inadequate in rural America. The disparities that were found may have considerable effect on ethics scholarship, research, ethical committees and education, and adds to the argument that rural American communities are under-served. (shrink)

It should surprise no one familiar with the problems in rural healthcare that 87% of a randomly selected sample of Nebraskans recently called for either fundamental or complete change of the healthcare system. Rural communities in the United, States have been hard hit by the rising cost of healthcare at a time of economic and demographic decline. Unable to sustain operating costs and personnel needs, rural hospitals and medical, practices have been forced to close their doors (...) at an, alarming rate.Furthermore, rural patients are decreasingly able to afford what services are available to them. Most must purchase insurance privately because they are unlikely to be insured through employment. Therefore, they pay dearly because they are not eligible for corporate rates and because insurance companies use experience instead of community rating to assess risk. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Pains And Gains Of Rural Health Practice:Lessons Books Never TaughtSridevi Seetharam, Bindu Balasubramaniam, G. S. Kumar, and M. R. SeetharamHow The Journey BeganIn the early 1980s, as fresh graduates from Mysore Medical College in southern India, we were brimming with a zeal to "cure the sick" and "change the world." We had an ideal of evidence-based, rational, ethical and equitable health care and set out to serve (...) class='Hi'>rural and under-served communities which included displaced forest-based tribes. In the initial years, with the naivety of the inexperienced, we believed that by correcting the dehydration of the doe-eyed six-year-old Mare and giving her a free course of antibiotics, we had made health care accessible to her. Much to our dismay, within a month, Mare was back in the outpatient clinic, with diarrhea all over again and looking thinner than ever. We realized that it was a losing battle to keep her healthy as long as she continued to drink water from the same contaminated stream, live in unhygienic surroundings, and eat only the paltry meals that her family could barely afford. We gradually began to connect these living examples to what our preventive medicine text books had stressed all along—there are many social determinants of health which, if left unaddressed, do not permit realization of the vision of health for all.Such instances continually pulled us out of the hospital building and into the villages and tribal hamlets. We discovered that our textbook of Preventive and Social Medicine (Park, 1986) (P&SM as we used to call it), was our most valuable possession. [End Page 106] We devoured the descriptions of national health programs, sanitation procedures, water treatment protocols, and maintenance of cold chain for vaccines with a completely new perspective. We discovered the Manual of Basic Techniques for a Health Laboratory, (World Health Organization, 1980) detailing how to set up a laboratory with low cost, reliable and simple methods. We learned to drive a jeep to haul supplies and patients. To step up the level of clinical care, some of us pursued post-graduate programs and equipped ourselves to provide more specialized care too. It has been over two decades since we embarked on this journey. We have encountered a variety of perplexing dilemmas with no clear solutions. We have sometimes been compelled to adopt health practices that were not really evidence-based, seemingly irrational, inequitable and even downright unethical. This narration describes only a few of our thousands of cases, and hopefully conveys our periods of self-doubt, despair and hope, as well as, the challenges we face to reconcile with the difficult choices we are forced to make every day.Unforeseen Challenges in Saving Mothers and ChildrenHigh maternal and child mortality rates have been one of the most disturbing aspects of the health care scenario in rural India. To ensure immunization of all children, health workers with vaccine carriers go from village to village and hamlet to hamlet to reach those infants that would have missed visits to the immunization clinics. Our grass-root workers facilitate these visits by identifying households with such children. Occasionally, they encounter families who spirit away the infant into the adjoining woods as soon as the health worker is seen approaching, and blandly proclaim that the child is not at home. Despite reassurance and counseling about the safety and necessity of the vaccine, their apprehensions and misconceptions are insurmountable. What is the extent of the responsibility of the health worker? Is it ethical to hunt down the child and force the administration of the vaccine in view of the public health gains, besides the child's welfare?A few months ago, a pre-term neonate was admitted to our hospital, but worsened and needed referral to a higher centre in the city. The family refused to go despite repeated persuasion and detailed explanation about the technical limitations of care at our centre. From the family's perspective, the variety of social, cultural, and monetary challenges they would face in the city were themselves limitations for care. We were compelled to retain the baby and continue giving the best care we could.Two... (shrink)

This article provides a broad survey of issues facing rural communities and suggests that medicalization of poverty concepts and interventions need to be tailored to those populations. Rural poverty may be both broader and deeper than in urban areas. Those challenges seem to produce a constellation of health conditions, as rural residents struggle with unemployment and lack of opportunities. Relatedly, rural communities struggle to maintain financially viable hospitals and specialty providers. The article closes by offering (...) a snapshot of rural-specific strategies to address these issues. (shrink)

Rural homestay is an important driver for developing rural tourism, which still grows against the wind in the post-epidemic era of the COVID-19 virus and shows unique attributes that are different from those of the traditional hospitality industry. Based on the five-dimensional model of fine service theory, this study introduces culture as a unique dimension to construct a six-dimensional model of rural homestay fine service and explores the influencing mechanism of rural homestay fine service on customer (...) loyalty. This study successively used expert interviews and questionnaires to develop the structural equation model through SPSS 26.0 and AMOS 24.0. The results showed that culture, as a unique attribute of rural homestay, is another important factor influencing the level of rural homestay fine service besides privacy, responsiveness, empathy, comfort, and psychological quality. Customer emotion of rural homestays significantly impacts customer loyalty and fully mediates the relationship between fine service and customer loyalty. This study verifies the effectiveness of fine service theory in the research of rural homestay good service and provides a new measuring tool, which has the potential to enrich and develop the exploration of fine service. (shrink)

About one-third of Australians use the services of complementary and alternative medicine (CAM); but debate about the role of CAM in public healthcare is vociferous. Despite this, the mechanisms driving CAM healthcare choices are not well understood, especially in rural Australia. From 2016 to 2018, 2,679 persons from the Goulburn Valley, northern Victoria, were surveyed, 28% (755) of whom reporting visiting CAM practitioners. A Generalized Linear Mixed Model was used to assess associations between various socio-demographic variables and the use (...) of CAM services. The strongest significant inverse (p < 0.05) association with CAM use overall was being unemployed, with markedly lower odds of using CAM than those employed full-time (OR 0.22 [0.12, 0.41]). The next strongest inverse relationship was being retired (OR 0.44 [0.30, 0.65]). The strongest positive associations were with English spoken at home (OR 2.38 [1.34, 4.24]), private health insurance (hospital cover) (1.57 [1.28, 1.91]), being Australian born (OR 1.61 [1.14, 2.28]), and female sex (1.25 [1.02, 1.52])). Females had significantly higher odds of using osteopathy than males (OR 1.98 [1.33, 2.96]) but there were no significant sex differences for chiropractic or massage. This is the first such study conducted solely for a rural Australian population. The drivers of CAM use differed from previous nation-wide studies and they varied across modalities. The factors identified here as being associated with CAM use could be used by CAM practitioners in developing person-centred services. Similarly, the findings are relevant to primary-care services in understanding what sectors of society might eschew conventional health care for CAM in rural regions, where health services are often limited. (shrink)

This survey describes in detail ethics committees (ECs) at acute care hospitals in Upstate New York. It finds that in just two years (1984 and 1985), following the Baby Doe controversy and the Report of the President’s Commission, 40% of urban ECs and 37% of university ECs were formed. One half of rural ECs formed in 1992–1995, following the Joint Commission on Accreditation of Healthcare Organizations (JCAHO) requirement of access to ethics consultation. Generally, ECs are committees of the (...) powerful within the hospital; the administration or the medical staff is the organizational parent of 73% of ECs. These groups appoint 80% of EC chairs and 79% of members; they constitute 45% of the membership. Most EC members (81%) lack even rudimentary formal training in bioethics, yet only 18% of ECs consider member education a major role. Many ECs are rather inactive: 53% meet less than every other month and 61% have fewer than six case consultations in the prior year. On the basis of this survey’s findings, suggestions are offered to improve the credibility of these ubiquitous committees as stewards of bioethics, rather than of the powerful within the hospital. (shrink)

Past studies have shown that women’s volunteer work benefits communities but that women themselves tend to minimize their efforts. Most of these studies, however, have been limited to women volunteering in suburban and urban contexts. Drawing on a study of women volunteers in rural Iowa, the authors find that women frame their volunteer experiences in three ways: as an expression of their maternal nature, as a way to socialize, and as a contribution to the local economy. The authors’ findings (...) depart from past research in that the women in their sample do not downplay the importance of their volunteer work; rather, they recognize the importance of their unpaid labor for the social and economic vitality of the community. The authors argue this recognition stems from the particular context in which their volunteerism takes place, namely, in a devastated rural economy in which future economic potential rests on women’s hospitality work. (shrink)

Maternal morbidity and mortality are high in the Indian context, but the majority of maternal deaths could be avoided by prompt and effective access to intrapartum care (WHO, 1999). Understanding the care seeking responses to intrapartum morbidities is crucial if maternal health is to be effectively improved, and maternal mortality reduced. This paper presents the results of a prospective study of 388 women followed through delivery and traditional postpartum in rural Karnataka in southern India. In this setting, few women (...) use the existing health facilities and most deliveries occur at home. The analysis uses quantitative data, collected via questionnaires administered to women both during pregnancy and immediately after delivery. By virtue of its prospective design, the study gives a unique insight into intentions for intrapartum care during pregnancy as well as events following morbidities during labour. Routine care in the intrapartum period, both within institutions and at home, and impediments to appropriate care are also examined. The study was designed to collect information about health seeking decisions made by women and their families as pregnancies unfolded, rather than trying to capture women’s experience from a retrospective instrument. The data set is therefore a rich source of quantitative information, which incorporates details of event sequences and health service utilization not previously collected in a Safe Motherhood study. Additional qualitative information was also available from concurrent in-depth interviews with pregnant women, their families, health care providers and other key informants in the area. The level of unplanned institutional care seeking during the intrapartum period within the study area was very high, increasing from 11% planning deliveries at a facility to an eventual 35% actually delivering in hospitals. In addition there was a significant move away from planned deliveries with the auxiliary nurse midwive (ANM), to births with a lay attendant or dai. The proportion of women who planned for an ANM to assist was 49%, as compared with the actual occurrence, which was less than half of this proportion. Perceived quality of care was found to be an important factor in health seeking behaviour, as was wealth, caste, education and experience of previous problems in pregnancy. Actual care given by a range of practitioners was found to contain both beneficial and undesirable elements. As a response to serious morbidities experienced within the study period, many women were able to seek care although sometimes after a long delay. Those women who experienced inadequate progression of labour pains were most likely to proceed unexpectedly to a hospital delivery. (shrink)

The role of nurses in leading the design and delivery of primary health care services to address health inequities is growing in prominence, specifically in rural Australia. However, limited evidence exists to inform nurse‐led primary health care in this context. Based on a focus group with nursing executives and semi‐structured interviews with registered nurses we describe nurse experiences of leading the design of a primary health care service in rural Australia and nurse transition to and practice in this (...) service. Nurse experiences were analysed using reflexive thematic analysis. The study reveals the centrality of relational integration in service design and nurse acquisition of relational practice as it relates to nurse to care recipient and nurse to nurse relationships. Tensions between primary health care nurses and their peers, and resultant de‐valuing of primary health care practice, are described. The acquisition of nurse professional agency draws attention to investments required to position nurses to lead and sustain care innovations external to hospital settings. The authors propose that relational approaches may provide nurses with the opportunity to reframe their leadership and service contributions towards community literate primary health care provision and provide a pathway to professional emancipation from constrained practice expectations. (shrink)

The annual volume of ethics consultations (ECs) has been a topic of interest in the bioethics literature, in part because of its presumed relationship to quality. To better understand factors associated with EC volume, we used multiple linear regression to model the number of case consultations performed in the last year based on a national survey. We found that hospital bed size, academic affiliation, and urban/rural location were all associated with EC volume, but were not the primary drivers. Instead, (...) these variables affected EC volume through three other variables, all of which relate to ethics staffing: the percentage of case consultations performed by a single individual; whether the survey respondent’s main role at the hospital contained the word “ethics”; and especially, the number of full-time ethics program staff. We conclude that EC is an example of supply-sensitive care, and further research is needed to determine the optimal level of EC activity. (shrink)

Barriers to mental health interventions globally remain a health concern; however, these are more prominent in low- and middle-income countries. The barriers to accessibility include stigmatization, financial strain, acceptability, poor awareness, and sociocultural and religious influences. Exploring the barriers to the utilization of mental health services might contribute to mitigating them. Hence, this research aims to investigate these barriers to mental health service utilization in depth at the Kabutare District Hospital of the Southern Province of Rwanda. The qualitative approach was (...) adopted with a cross-sectional study design. The participants were patients with mental illnesses seeking mental health services at the hospital. Ten interviews were conducted in the local language, recorded, and transcribed verbatim and translated by the researchers. Thematic analysis was applied to analyze the data collected. The results revealed that the most common barriers are fear of stigmatization, lack of awareness of mental health services, sociocultural scarcity, scarcity of financial support, and lack of geographical accessibility, which limit the patients to utilize mental health services. Furthermore, it was revealed that rural gossip networks and social visibility within the communities compounded the stigma and social exclusion for patients with mental health conditions. Stigmatization should be reduced among the community members for increasing their empathy. Then, the awareness of mental disorders needs to be improved. Further research in Rwanda on the factors associated with low compliance to mental health services with greater focus on the community level is recommended. (shrink)

The mortality and morbidity resulting from noncommunicable diseases including cancer in sub- Saharan Africa are predicted to overtake that of infectious diseases by the year 2030. Esophageal cancer is on the increase in Tanzania. This study estimates risk factors for esophageal cancer, ethical issues and the level of awareness of cancer related services among adults in rural Kilimanjaro. A cross sectional descriptive study was conducted of adults aged 18 years and above in three wards, namely, Kahe, mabogini and Arusha (...) Chini, Moshi Rural District, Kilimanjaro region. Face-to-face interviews were conducted with a total of 419 individuals. The mean age was 36.47 =13.49) years. Of those who participated, 211 were male and 60% reported to have completed primary education. A majority of participants were knowledgeable about esophageal cancer risk factors. Overall, 15% and 23% of the participants reported to have been smoking and drinking alcohol, respectively. Male respondents were almost three times more likely to be smokers as compared to female respondents. Moreover, people who were self-employed were about five times more likely to be smokers as compared to those who were unemployed.. Male respondents were almost two times more likely to be drinkers as compared to female respondents. Overall, the level of awareness of cancer related health services was about 70%. The study findings confirm that despite a good level of knowledge about risk factors for esophageal cancer, the practice of exposure to risk factors is alarmingly high. Awareness of where to seek cancer related health services was high with hospitals been mentioned by the majority though there was low understanding on modalities of treatment among adults in Rural Kilimanjaro. Intervention measures should aim at further increasing knowledge of cancer risk factors and reduce the practice of such risks. Ethical matters including truth telling, ageism and autonomy need to be addressed to improve the perception of cancer related health issues and health seeking behaviour. (shrink)

Publication date: 15 October 2018 Source: Author: Ehiosun O. Marvel NHIS was launched officially on 6th of June 2005. The Scheme is designed to provide comprehensive health care at affordable costs, covering employees of the formal sector, self-employed, as well as rural communities, the poor and the vulnerable groups. However, client satisfaction of services rendered continues to be a major concern for the improvement of NHIS. This study is designed to determine the level and causes of dissatisfaction of clients (...) accessing NHIS clinic at the Kubwa General Hospital, Kubwa, FCT, Abuja. This study employed a descriptive cross sectional survey. 279 NHIS enrollees were recruited for this study at the Kubwa General Hospital. Questionnaires were administered and the level of dissatisfaction and satisfaction of NHIS services were analyzed. The satisfaction rate was 69.2% while the dissatisfaction rate was 22.9%. The respondents were satisfied with the attitude of health workers in NHIS clinic, Kubwa. However, they were dissatisfied with waiting time, attitude of record officers and those in pharmacy department. This study found that the level of dissatisfaction with NHIS services is high despite a high satisfaction level. The Attitude of health workers may influence the dissatisfaction of enrollees. NHIS is still limited to the formal sector. (shrink)

To design effective strategies to improve ethics consultation (EC) practices, it is important to understand the views of ethics practitioners. Previous U.S. studies of ethics practitioners have overrepresented the views of academic bioethicists. To help inform EC improvement efforts, we surveyed a random stratified sample of U.S. hospitals, examining ethics practitioners’ opinions on EC in general, on their own EC service, on strategies to improve EC, and on ASBH practice standards. Respondents across all categories of hospitals had very (...) positive perceptions of their own ethics consultation service (ECS) and few concerns about quality. Our findings suggest that the ethics-related needs of small, rural, non-teaching hospitals may be very different from those of academic medical centers, and therefore, different approaches to addressing ethical issues might be warranted. (shrink)

Background Nurses in acute care are frequently involved in ethical decision making and experience a higher prevalence of ethical conflicts and dilemmas. Nurses in underresourced rural acute care settings also are likely to face unique ethical challenges. However, rarely have the particular contexts of these experiences in rural acute care settings been researched. A culture of silence and fear in small towns has made exploring these issues difficult. Objectives To explore registered nurses’ experiences of ethical issues and ethical (...) decision making in rural acute care hospitals in northern Ontario, Canada. Research design Guided by an interpretive descriptive approach, data were collected by two nurse researchers using in-depth, individual, and semistructured telephone interviews. Data were managed with NVivo v.11 and analyzed using inductive, comparative, thematic analyses. Participants and research context The participants were eight registered nurses working in two acute care hospitals in northern Ontario. Ethical considerations Ethical protocols were followed in accordance with ethics approval from the researchers’ university and the hospitals. Findings Results identified four themes that culminated in the development of a quadruple helix ethical decision-making framework of power, trust, care, and fear. Discussion and conclusion The participants described complex ethical conflicts and dilemmas in acute care settings that were influenced by the context of working and living in small rural communities in northern Ontario. Nurses described navigating ethics in practice using a tension-based approach to ethical decision making, needing to carry these issues silently and often having no resolution to ethical challenges. These findings have important implications for nursing education, research, and practice. Nurses need safe spaces, formal ethics support, and improved access to resources. Additional ethics education and training specific to the unique contexts of rural settings are needed. (shrink)

This paper examines caregiving for sick older family members in the context of socio‐economic transformations in rural China, combining empirical investigation with normative inquiry. The empirical part of this paper is based on a case study, taken from fieldwork in a rural Chinese hospital, of a son who took care of his hospitalized mother. This empirical study highlighted family members’ weiqu (sense of unfairness)—a mental status from experiencing mistreatment and oppression in family care, yet with constrained power to (...) explicitly protest or make care‐related choices. Underpinning people’s weiqu and constrained choice, as informed by the conception of structural injustice, is the impact of unjust social structures, organized by unfavourable norms, discriminatory social policies and institutions targeting rural populations. By restraining individual choices and capacities in supporting health care for aging populations, these unjust structures create additional difficulties for and discriminations against rural families and their older members. Some policy recommendations are proposed to mitigate structural injustice so as to empower families and promote care for older people in rural settings. (shrink)

Background: Scholarly work is needed to develop the conceptual and theoretical understanding of trust to nursing practice. The transition from hospital care to complex pediatric homecare involves nurses in myriad roles, including management and care provision. Complex pediatric homecare transforms children, families, professionals, and communities, but its exact implications are unclear. Research objectives: To conduct an ethical inquiry into the role and responsibilities of nurses in the qualitative experience of adults involved in the hospital-to-home transition of young, ventilator-dependent children. Research (...) design: We followed methods described by Franco Carnevale. We used a sociologically grounded theoretical orientation—trust—to re-interpret qualitative data for an ethical inquiry into a specific facet of that data. Participants and study context: The participants included 26 adults, including 14 nurses, involved in the hospital-to-home transition in a Canadian province. Participants represented family, hospital, home, and government. Ethical considerations: The Conjoint Health Research Ethics Board at the University of Calgary approved this study. Findings: First, the concept and practice of trust was salient to the experience of transition. For example, responsibilities’ allocation between hospital-based professionals to mothers, home-based nurses, and non-professionals necessitated reliance and vulnerability. Second, the consequences of distrust connected to recognized challenges. For example, tensions along rural–urban, medical-family, and professional–personal divide each revealed suspicion and uncertainty that led to isolation and anxiety for all involved. Third, recommendations to improve the experience and mitigate the challenges of transition can be grounded in trust promotion. For example, transition-specific education programs and codes of ethics would promote openness, recognize mutual vulnerability, and advance trust in transition. Conclusions: The challenges to transition evidenced distrust, while trust represents a powerful tool to counter these challenges and their implications. A climate of trust could bridge divides between mothers and professionals; rural and urban professionals; and professionals with differing relationships with the family. (shrink)

Next SectionBackground International and national agencies play a major role in setting HIV care-and-treatment priorities in low-income-countries. Little is known about priority setting at lower health-system levels. The objective of this article is to explore experiences of HIV priority decisions, at what levels these decisions are made and how they might influence the distribution of health benefits in a high-endemic region in Tanzania. Methods This is a qualitative study using observations, key documents and semistructured focus-group and individual interviews (43) with (...) health workers, patients and administrators at one regional and one district hospital. The analysis was based on an editing analysis style. Results Health workers did not perceive themselves as bedside rationing agents and they reported following national recommendations and felt they have little impact on important priority decisions. Health benefit distributions were largely determined by priority decisions made at a national level. External factors, such as eligibility criteria, inadequate funding and barriers to access seemed to play a major role in the actual distribution of health services and benefits in the region. Patient groups who were actually given high priority were the sickest patients, those living near a facility and those who could afford long journeys and frequent visits. Low-priority groups were those experiencing other co-morbidities or treatment failure, children, asymptomatic patients and the poorest. Conclusions/significance The interaction of priority setting across health-system levels and their impact on distribution of health outcomes in the population has been underestimated. The distributional pattern of health outcomes calls for further normative assessment. (shrink)

Background: In China, the conventional family-based ageing care model is under pressure from social transitions, raising the question of whether and to what extent families are still capable of dealing with the care of the aged. Objective: This article examines the vulnerability and inadequacy of families to bear responsibility for the care of the aged against a backdrop of socioeconomic transformation and diminishing institutional support in rural China. Research design: This article adopts an empirical ethical approach that integrates empirical (...) investigation with ethical inquiry. Participants and research context: The empirical component of this article focuses on the lived experiences of caring for a wife and mother with dementia in one rural Chinese family, collected from a 6-month fieldwork study conducted at one primary hospital. Ethical considerations: Approval was obtained from the university ethics committee. Findings: The empirical study highlights a conflicted family process of managing and negotiating care that indicates the inadequacies and limited ability of families to deal with aged care tasks. In addition, inadequate structures and institutional deficiencies exacerbate the vulnerability of rural families and their inability to offer adequate care. Conclusion: Acknowledging the vulnerability of families as ageing care providers, this article calls for a socially supported family care model for rural older people in China and also proposes policy recommendations. (shrink)

Melanie presented at twenty weeks of gestation to an obstetrics clinic in a critical access hospital in rural Vermont. She was excited to undergo routine fetal ultrasonography, but her obstetrician gave her grave news: the ultrasound revealed hypoplastic left heart syndrome, a devastating congenital heart defect. Initially, Melanie agreed in general to pursue surgical care for her fetus—a three‐stage process that has somewhat uncertain results and could only be done in tertiary care facilities far from her home in Vermont. (...) A week later, while the maternal fetal medicine and pediatric cardiology units made arrangements with colleagues in Boston, Melanie began having second thoughts. An ethics meeting was called to discuss conflicting clinician reactions to Melanie's dilemma. Most of the clinicians were stunned that the patient would change her mind. What advice should the ethics consultant offer the team about caring for Melanie? (shrink)

Background: The pressing issue of aged care has made gendered caregiving a growing subject of feminist bioethical enquiry. However, the impact of feminism on empirical studies in the area of gendered care in Chinese sociocultural contexts has been less influential. Objectives: To examine female members’ lived experiences of gendered care in rural China and offer proper normative evaluation based on their experiences. Research design: This article adopted an empirical ethical approach that integrates ethnographical investigation and feminist ethical inquiry. Participants (...) and research context: This article focused on three cases of gendered caregiving for sick older members collected from a 6-month fieldwork conducted in a primary hospital in rural China. Ethical consideration: Approval was obtained from the university ethics committee. Findings: The empirical work highlights caregivers’ voices of weiqu (a sense of unfairness) resulting from their constrained choice when being pressured to engage in caregiving, which is associated with a disadvantageous socio-institutional and structural backdrop in current rural China. Informed by the conception of structural injustice, the normative analysis of this article traced various forms of social norms, structural deficiencies and ageing welfare institutions, as they intertwine and transmit into additional care deficiencies against rural families and their female caregivers. Conclusion: This article identified the constraint of gender hierarchy and its intersection with external social structure that exacerbate gendered oppression and exploitation of female labour in rural China. Normatively, this article argues that the current configuration of rural family care, featured by structural impediments and exploration of female labour, is unjust. Some policy recommendations are proposed to empower caregivers and advance care for rural older people. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Towards Language Justice:A Call to Identify and Overcome Structural BarriersFelicity RatwayThe patient I am interpreting for praises my interpretation. I've done nothing particularly noteworthy to merit her praise; I followed basic ethical tenets, nothing more. Hearing everything the provider says rather than a brief synopsis exceeds her expectations after many experiences working with untrained interpreters, or being refused interpreting services altogether. The bar shouldn't be this low.I am exhausted. (...) Like most interpreters, I am an independent contractor. I must work 5 am–9 pm to get paid for 8 hours of work. With some language companies, I earn less than minimum wage. To many new interpreters, $35 per hour sounds great—then they realize that driving to and from a one-hour appointment involves two hours of unpaid drive time. In rural areas, this really takes a toll. I spend hours checking pay stubs; I find errors nearly every pay period, but I wouldn't have a court case for the repeated underpayments because when I reach out to ask for the errors to be fixed, they are eventually corrected. Despite my state and national certifications and Master's degree in Interpreting and Translation Studies, medical interpreting doesn't pay the bills. I supplement my income through multiple other jobs.Laws intended to protect the patients we work with as interpreters are seldom enforced. Title VI Guidance defines a competent interpreter as one who has been trained, demonstrated proficiency, demonstrated interpreting skills, and agrees to abide by ethical standards. Patients fare better when competent interpreters are available, but when most patient and provider experiences are with interpreters who haven't met competency standards, patients and providers (understandably) lose trust in the profession. The profession has few opportunities for advancement and struggles to attract interpreters to go through rigorous training or build a long-term career. Skilled interpreters soon leave for greener pastures: the Oregon Health Authority (OHA) houses a registry of interpreters who meet minimum state training and proficiency requirements, and a 2019–2021 study found that roughly 92% of interpreters due to renew dropped off of the registry instead.When I began interpreting, I was shocked by how infrequently laws protecting patients' rights to interpreting services were followed in practice. At primary care appointments, patients often cannot answer questions about specialist visits because interpretation was not provided at the specialist's office. I knew recipients of federal funds couldn't [End Page 164] legally bill patients for interpreting services, yet I was asked to sight-translate paperwork that stated patients would be billed for interpreting services if they were late to an appointment. I reported the issue; years later, the same paperwork would still appear on their public-facing website. I discovered that though state law required credentialed interpreters to be made available, no agency had been tasked with enforcing that law; all that could be done with my complaint was to refer it to the patient's insurance company.In Oregon, Coordinated Care Organizations (CCOs) manage Medicaid plans, and are required to pay for interpreting services for their members. Instead of hiring interpreters directly, many contract with language companies that, in turn, hire us. Providers must book interpreters through the specific language companies contracted with the patient's CCO to avoid paying for the interpreter themselves. I am often called to interpret for speakers of indigenous languages even though I am not able to meet their needs as a Spanish interpreter. I offer contact information for organizations that could provide interpretation in the appropriate language, but the receptionist tells me that she can only go through specific vendors because the clinic doesn't want to have to pay out-of-pocket. Indigenous-led organizations that pay indigenous interpreters a living wage are not contracted with the CCOs in my region. In some cases, when interpreters are not available for a particular language through the CCO's preferred vendor, providers instead ask that an appointment be rescheduled, hoping that an interpreter will be available later. I have seen speakers of rare languages seeking primary care end up in the hospital after being rescheduled several times.Providers I work with often don't know... (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Incorporating Religion into Psychiatry:Evidenced–Based Practice, Not a Bioethical DilemmaMary D. MollerFor over sixteen years I was the owner and clinical director of an advanced practice nurse–managed outpatient rural psychiatric clinic staffed by APNs, a social worker, a licensed counselor and several graduate students. Many of our patients were victims of severe and often brutal trauma and abuse suffered at the hands of family, friends, and various professionals including (...) spiritual leaders. We also uncovered sources of abuse suffered from those involved in occult practices ranging from seemingly innocent white witchcraft (Wicca, Paganism, New Age) that includes such activities as astral projection and remote viewing to the darkest possible black witchcraft (perpetrating evil, incanting evil spirits, casting spells and hexes, creating dissociative identities) such as occurs in ritual abuse and satanic rites. Both types of witchcraft also typically involved family, friends, various professionals, and spiritual leaders. Recognizing the controversy surrounding the reality of witchcraft I am sharing a story that I hope will help break down the barriers that prevent many patients from receiving the treatment that would provide the most benefit to recovery.Seeking services for these patients led me on an intense personal and professional journey that included a profound Christian born–again experience at almost 50 years of age. My professional career grew in nearly indescribable terms as a result of the incorporation of prayer and deliverance ministry as part of the services we selectively provided. Today I always include assessment of spiritual experiences a patient has as well as spiritual supports that are available with every new patient intake. For patients who indicate that prayer is one of their supports, I ask if they would like prayer at the conclusion of the session. The gratitude that is expressed by individuals who appreciate being able to pray with a psychiatric provider is often profound.In the field of psychiatry there has been a long–standing and distinct taboo regarding incorporating religious and spiritual aspects of life experience into treatment unless it is to frame most of these discussions within the context of psychosis. This stems from the advent of psychoanalysis in which religion was deemed a neurosis and atheism became the goal. Some still hold to that belief and there certainly remains controversy regarding the incorporation of prayer into routine outpatient or inpatient care. The essential starting point is the determination of accurate differential diagnosis, which can often be a lengthy process. The clinician must be careful about distinguishing between religious experiences and religious delusions, and often this takes time to sort out. The determination of the etiology of hearing the voice of God or the devil or demons must be carefully parsed and framed within the context of the situation and culture the patient describes. If the clinician denies the existence of God or the devil or demons or the practice of witchcraft, the patient’s descriptions of such experiences will be quickly [End Page 206] labeled psychotic. The patient may then experience a lengthy hospitalization and treatment with psychotropic medications that can have an extremely negative effect on the possibility of recovery. Once I witnessed the level of healing that occurs with carefully administered spiritual interventions that are related to specific spiritual experiences that are based on the patient’s belief system, there was no going back to using only allopathic medication and non–spiritual psychosocial interventions, even in spite of the criticisms from others. The key is to understand and respect the patient’s belief system, if this is not congruent with the practitioner’s belief system, then practitioner must refer out.In the United States, an increasing persecution of Christianity and a devaluing of the Judeo–Christian heritage of our Constitution are creating a climate of intolerance to the expression of religious values resulting in an expectation that Christians should compromise their beliefs for the sake of political correctness. As a doctorally prepared psychiatric–mental health advanced practice nurse I experienced a profound born–again Christian experience that ultimately led to study of the Hebrew roots of Christianity and I now worship in a Messianic Jewish synagogue. It is impossible for me to not include the concept of spirituality into... (shrink)

Production and social reproduction are increasingly characterized by its multisitedeness given the rising number of working people migrating for wage work. The ways in which these spheres interplay, both at migrants’ places of origin and at the destination sites of work, differ greatly across societies. Based on primary research in Puerto Gaitán, Colombia—a small town in a largely rural area serving as an agribusiness and oil exploitation hub—I suggest that the complex expressions of the production-social reproduction nexus are intimately (...) connected with the ‘politics of land’. While the town of Puerto Gaitán, as a place of migration, provides for most everyday ‘material’ elements to sustain life (food, shelter, clothing, care, schools, hospitals), other crucial aspects of social reproduction are still heavily performed at indigenous’ rural collective lands (resguardos). Resguardo lands are a key socio-cultural basis of Indigenous peoples’ reproduction, despite serious limitations partly due to their isolation, to restrictions on the free circulation by large landowners, and to historical underlying drivers founded in dispossession. One important analytical and political implication is that migrant workers’ access to land should respond to a broader conceptualization of social reproduction—i.e., in which non-material aspects are equally considered. (shrink)

In Ethiopia, conscientious objection (CO) to abortion provision is not allowed due to government regulations. We here report findings from a qualitative interview study of 30 healthcare professionals from different professions working with abortion in Addis Ababa, Ethiopia. CO is practised despite the regulations forbidding it. Most informants appeared to be unfamiliar with the prohibition or else did not accord it weight in their moral reasoning. Proponents of institutionalization/toleration of CO claimed that accommodation was often feasible in a hospital setting (...) because colleagues could take over. Opponents pointed to threats to patient access in rural settings especially. Both proponents and opponents invoked tenets of professional ethics, viz., the right not to be coerced into actions one deems unacceptable, or the duty to provide care, respectively. More societal and professional discussion of the ethics and regulation of CO, and a clearer link between legal regulation and ethical guidance for professionals, are called for. (shrink)

This paper examines the International Student Competition on Place Brand­ing and Mediterranean Diet held in Fermo, Italy, in the context of the devel­opment of rural areas. This one-week food-related educational programme was organised by the University of Macerata’s Department of Education, Cultural Heritage and Tourism in collaboration with The Piceno Laboratory on the Mediterranean Diet, a local network of public and private stakehold­ers committed to the promotion of Fermo area as a touristic destination based on traditional gastronomy. The aim (...) of this study was to understand how and to what extent such food-related educational events may con­tribute to providing students with the knowledge, expertise and soft skills needed for careers in the food tourism sector. Of interest also was how such events may benefit the development of rural areas. The ISC was founded in 2016 and continued in 2017, 2018 and 2019. In order to assess students’ perceptions about the experience, specifically regarding what they felt they had learned about food tourism, and which soft skills they had acquired or honed, 13 students who participated in the 2017 event were interviewed for a qualitative study. Moreover, the authors drew upon information gleaned from interactions with students and teachers, as well as with several important actors of the local food and tourism sector, in­cluding tourism and hospitality entrepreneurs and representatives of gov­ernment agencies, with whom they collaborated in the context of planning, running and evaluating the events. The findings show that the ISC can provide students with a good general understanding of the territory and practical knowledge about place branding and food tourism. In terms of career preparation, the combination of fieldwork activities with traditional lectures and group activities was particularly fruitful in promoting soft skills such as communication, efficient use of social media, teamwork, problem-solving and decision making. (shrink)

Government have in the past embarked on many infrastructural programmes such as building of roads, hospitals, health centers in the rural areas, schools, etc for its citizens. A lot of projects have been carried out in the past years, there are institutions formed to carter for the implementation of such programmes, institutions like NEMA to check disasters, repair of roads, collapse buildings etc. NDDC was formed to take care of roads in the South East but many of these (...) programmes and institutions have not fared well in recent years because of corruption. Take for instance in the channels news of Tuesdays 16/6/2020 the new NDDC Director revealed how projects awarded to contractors in the past were all not carried out, funds meant for those purposes were all embezzled into private pockets. With the coming of Covid 19, governments have now found cover to say Covid 19 has attacked all revenue sources and so cannot carry out projects in the country. This is the burden of this work. Is it true that it is Covid 19 that halted the success of programme implementation in Nigeria? This is what this paper is out to ascertain. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:What inspires action in Global Health?Daniel Palazuelos"Why do all of you want to go to the middle of nowhere and take care of the sickest people even though you won't have half the tools necessary to make the slightest difference?" he asks.I'm sitting in the Intensive Care Unit workroom enjoying one of those rare, calm moments during residency when this question suddenly breaks my peace. A co-resident, my friend (...) from Latin America, makes this inquiry without even looking up, as he clicks nonchalantly through some Internet pages. I look at him and try to understand him within his context; he was born and raised in [End Page E6] what is traditionally considered a "resource-poor setting," but through talent, hard work, luck and privilege he was accepted into one of the best residency programs in one of the best U.S. hospitals. Unprepared, I give some anemic responses about social responsibility and global citizenship.He looks at his screen and clicks on a couple of links. Suddenly, he turns to me and exclaims, "I get it! You guys are going because then you can put your PWAB on your CV!" I give him a blank look.He stands and goes over to the dry erase board to write: "PWAB—Picture With an African Baby."I'm amused for a moment, and then suddenly hurt. What does this mean? Is he questioning our intentions, our moral resolve? I look over to his computer and see that he's been flipping through the "Global Health Residency" pages of all the local residency programs, or the Facebook pages of colleagues who have recently returned from work abroad. My hurt morphs into incredulity—all the pages have a picture of a beaming, healthy doctor holding a beautiful, newly happy, previously sick, African baby. And then, the code bell goes off, and the admissions start. Reflection time is over.Years later, now that I have become a junior faculty member within the same residency program, I divide my year between global health projects in rural Mexico and Guatemala, the classrooms of a U.S. medical school, and the patient rooms of a teaching hospital. The number of undergraduate and medical students who approach me because they want advice about how to work in global health is staggering; their emails fill my inbox and their faces grace my office hours. External observers have even compared the unprecedented rise of this type of interest to "a veritable tsunami," and we often take for granted that this is because the field is "inspiring" (Mallampati & Heintz, 201, p. 22). We still don't know, however, what all this inspiration becomes once it touches down on-site. For many students, the experience with talented mentors on-site opens up for them a life-long career that aims to address the greatest challenges of our day. The PWAB, however, implies that for an important number of other students, global health is becoming a social capital commodity: an edu-vacation, something to make your mother proud, win a mate, maybe even just another mandatory rotation needed to spice up the application for a career in a highly competitive subspecialty.If students are the future of this field, then the way that global health educators like myself manage this issue may ultimately determine the objectives and scope of countless potential projects hoping to help the billions of people barely surviving abject poverty. I have a career in global health that is more than a hobby because of the clear vision and strong leadership of my mentors and our university (Farmer, 2011). When I was hired as faculty, they worked with me to find the right full-time equivalent (FTE) split so that I could both make a living as an attending, and also still have time to teach, think, research, and manage a project abroad pro bono. But it's from this point that my question begins: once the students are inspired, and the investment made, what inspires good, sustained, pragmatic action in global health?A big part of the answer to this question will depend on how we define global health. Global health is growing, but... (shrink)

This volume addresses how spatialized identities, belongingness and hospitality are interrogated in British and Irish contemporary art (painting, installation, video, photography, new public art) at a time when economic and political crises tend to encourage individual or exclusive usages of space. It sketches a cartography of encounters encompassing the home, the neighbourhood, the village or city, and the nation. Artists interrogate how intimacy is both facilitated and threatened by spatial devices, how space fashions our perception of gender, social or ethnic (...) identity and activates power relations. They explore the need for a home or a homeland and the various forms exile or placelessness can take. They may also take part in the restoration of the Commons and the constitution of alternative communities. Whether the analyses focus on the private sphere (in urban, suburban or rural contexts), or on shared communal spaces, they ponder the mechanisms of inclusion and exclusion at work in human encounters and shed light on how artistic apparatuses make the tensions between openness to the other and rejection or withdrawal perceptible. The approach, borrowing from art history as well as anthropology lays emphasis on context, situationality and field work; it proposes to repoliticize relational art and concludes on the dialogical positionality which lies at the core of art. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Dwelling in the GapsGalen SanderlinHave you ever wondered what it would be like to be a mythical being? As a hermaphrodite, I exist in a culture that sees only male or female. Those of us who don’t fit into the rigid sex binary are left out of many of the protections offered to our cousins who more neatly fit the two categories. This leaves an enormous gap in cultural (...) definitions and societal acceptance of my fundamental being.My journey has three main threads: 1) My personal and often rocky self–development, as I have come to understand and accept what it means to be a hermaphrodite, and finding others of my tribe; 2) recognizing the harm done by my medical treatment and actively seeking to change how the medical system treats hermaphrodites, starting from birth onwards; and 3) identifying what was done to me as a human rights violation.I was born in January of 1975. No genetic test was done at the time. My body looked male and my assigned sex/gender was male. As a child, I gravitated toward “male” toys. In 1989, a rural– MD noted that I was not experiencing puberty like my peers and she recommended that my parents take me to a teaching hospital in Seattle for tests. A pediatrician referred me to the adolescent medical division, and from there I was referred to an endocrinologist. After conducting many invasive tests, including drawing blood and comparing my testicles to a bead ring of ersatz testicles, the endocrinologist diagnosed me with Klinefelter’s Syndrome and a karyotype of 47,XXY. I was prescribed testosterone injections to affirm and strengthen the male identity I was assigned at birth and to prevent my body from developing secondary female sex characteristics (breasts and hips).Soon after the shots started I bulked up, adding muscle and hair everywhere. I also became dangerously aggressive and moody. I began to have serious self–esteem issues and a drastic increase in risk–taking behavior as my body was subjected to medical intervention that my parents innocently followed.The prescribed hormone treatment fractured my psyche—what I know now to be a common defense mechanism experienced in trauma survivors. The portion of my consciousness that existed prior to testosterone became deeply buried to prevent harm, and I experienced the emergence of a new “entity.” With each change in prescription, new fractures occurred: testosterone cypionate to enanthate shots, to patches, to gels.The physicians did not consider my feelings or preferences during recommendations or treatment. I feel I was forced into a “male” body based on a medical emergency they created to ease societal concerns.Last February I decided to stop hiding. Tearing the mask off has brought a flood of emotions hidden behind old traumas. I’d been living openly as an intersex person, but still deeply closeted, if not from the public—worse, from myself.Here is the writing that came pouring out of me as I’ve been accessing my repressed memories:I felt the first stirrings of my existence in August of 1989, like a fleeting visage of a long lost lover passing just out of view. The timing of the universe—Out of the infinite we are born, but in this case the body we are to occupy was already housing many other souls. Is this some mistake? Asked to be patient I waited... Late in the year of 1989 I was borne on testosterone wings into an imaginary masculine role/body.Molded in the image of Adonis, Hermes was forced to submit. No longer sexless or ageless—lost in a sea of supposed pressures and roles. My assumed gender [End Page E10] was male. Why!?! Screaming, thrashing, and damaging all around me, no way to express the horror of being so brutally manhandled.My guide Galen/Juniper were excised from our psyche—lost behind a barrier. The only solace was a shared beat: 1,2,3,4 over and over. Was this the pounding of our heart? Thank god for our love of music least we lose ourselves entirely.Why do they insist on calling me Galen? I no longer knew who this was. I... (shrink)

In lieu of an abstract, here is a brief excerpt of the content:A Changed Life: Becoming True to Who I amJay Kyle PetersenI was born intersex in 1952 in the county hospital of a very small, ultraconservative town in rural Southwestern Minnesota. My biological parents and paternal grandparents raised me on a small family farm nearby. I knew by age four I was a boy. No one told me. There was nothing to decide. I have always known I am (...) male. My parents never discussed my unusual condition with me and died having never accepted me. They denied my true identity and instead chose to give me a girl’s name and raise me as a girl.My paternal grandmother knew I was different. She lived on the farm with us and, as she explained to me later on in life, changed my diapers and helped take care of me as an infant and toddler. She also was a Certified Nurse’s Aide in the pediatric ward of the county hospital where I was born and could see that anatomically I was different from other infants. She remained my lifelong ally and friend until her death in 1993. She and Grandpa provided an oasis in their farmhouse where I felt accepted. I felt relaxed and comfortable in their company, and could just be myself. Grandpa took me fishing. Grandma drove me to 4–H State Fair demonstrations and supported me in the audience for which she had helped prepare me. My grandmother taught me good humor, excellence and how it was okay to make mistakes. Much later, in 1977, she drove four hours alone to Minneapolis in blizzard conditions to be my “concerned family person” during chemical dependency treatment, when my mother and dad refused and she also celebrated with me after my successful completion of the program. I loved her and she loved me and she showed it. With her I found refuge away from the pressure and abuse in our farmhouse.But my grandparents and parents did not show me affection physically. The only touch I felt from my family, except my paternal grandparents, was abusive including certain religious figures outside our family. Farm animals and pets provided warmth, love, acceptance, and companionship. I loved riding around the farm on the back of my pet pig, Lucy. Nature, especially trees, wild weather, and local lakes provided rest for my stretched, weary nerves and stimulation for my imagination. There was something about the vivid and contrasting colors, even the sounds and livingness about it all—rich deep moist greens, clean pure vast open blues, dark warm earth which I laid upon and felt in my hands. These and the soothing sounds of the wind gently moving through tree leaves and corn leaves and the lake water lapping calmly upon sandy shores, as Grandpa cast out his line: all this I found both relaxing and energizing and allowed for me the safety and environment to rest, let go and expand so my natural inclinations to express myself creatively could open up. Otherwise, I had a very lonely, frustrated, painful, humiliating childhood and adolescence filled with mounting anger and a sense of futility because I could not be or express my real male self—including my attraction to girls.The cultural and religious pressure I felt, the increased abuse and social lies I was forced to live with—including being forced to wear girls’ clothing against my will—became unbearable. I sought [End Page 106] refuge in addiction early on—food for comfort, nicotine for mood alteration, alcohol given to me by my dad, and more. I became suicidal, and remained for a long time terribly depressed.The geneticist I have consulted for the last four years says that physicians who examined me prior to my genital surgeries described my genitals as “male structures formed without enough testosterone,” rather than female structures formed in the presence of excess androgen. She told me that the features recorded in my medical records, and that she had observed, indicate androgen exposure in utero along with an inherited genetic condition such that she says my condition began at conception. I was born with XX karyotype and testing for usual causes for androgen excess with someone... (shrink)

The ramifications of including genetic components in the clinical studies conducted in non-academic settings create unique ethical challenges. We used a qualitative research design consisting of semi-structured interviews that took place between October 2010 and September 2012. The sample consisted of 80 participants − 38 physicians and 42 coordinators − who worked across a number of different settings, including clinics, private practices, small hospitals, free standing research centers, and blended hospital-institutes in both rural and urban communities in 13 (...) states across the United States. The respondents primarily conducted industry sponsored trials and recruited their own patients as research participants. A majority of the respondents (65%) reported that most of the studies they conducted included an additional genetics component, and so participants were asked to donate specimens for genomics or biobanking. While genomics association studies were perceived as being of benefit, awareness of ethical implications associated with such studies was limited. The rapid advances in genetic technologies make it hard for clinicians and coordinators to help patients make informed decisions about participating in clinical research, and underscore the need to ensure that the regulations governing research on human subjects keep pace with the social and technological changes. It seems essential to discern legitimate ethical concerns and find ways to convey what is going on, what is possible and what might not be possible in terms of protecting privacy, anonymity, and confidentiality. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:The TripletsManeesh BatraI am a neonatologist and for the majority of my clinical time I care for babies and their families at a large University-based referral neonatal intensive care unit (NICU) in the United States. In 2003, I first visited this rural Ugandan hospital shortly after the opening of a special care baby nursery there, and have been involved with development of that program ever since.Uganda is a (...) beautiful, land-locked country in East Africa with a sordid political history. It is a developing country that is poor, mostly rural with a high fertility rate and a life expectancy of 42 years. The government spends $5 per capita per year on healthcare. The district with the hospital has a population of 500,000, the majority of which is rural. Access to health services is poor, even by Ugandan standards, and child mortality is in the higher band in the country.Most people in the region live in extended family clans. A common home is made of earth, with a grass roof, and a jerry can out front for collecting water from the well. It is an exquisitely lush landscape with fecund soil. At the hospital, there is limited electricity, lab support, medications, blood supplies, and health care workers. For the 200 bed hospital (that accommodates upwards of 400 inpatients when necessary, no one is turned away) there are four to seven Ugandan doctors, who do everything from C-sections, to colostomies, to HIV care to resuscitate babies in the NICU. For a ward of 20-80 patients there are one to two nurses, and maybe a nursing aide. Families do the majority of the care in the hospital, even in the NICU. Mum's express breast milk, perform tube feeds, wash the linens, notify staff when an IV infiltrates, and keep babies warm.Day OneAnother beautiful morning, with fresh instant coffee in hand, birds chirping and kids playing outside. It is good to be back. Over the last eight years, I've [End Page 78] made some close friends here and its good to be among them again. Every time I visit and return home, I leave a piece of me here, and bring back something new with me. This morning that feeling is overwhelming me, an incredible inspiration swells. I am not tired and I want to be busy. It is no wonder that this is where I was inspired to pursue caring for babies as my career. Over these years, it has been amazing to see the staff care for the community's babies and mums here. As an outsider, an opinioned one at that, I feel burdened at the thought of these babies dying somewhat needlessly. Is it really no-one's fault? How should one act in the face of scarcity, knowing there is a better standard to be had if only circumstances were different?I walked into the NICU to find triplets had arrived! Born at about 33 weeks they were two months early. Since they weighed around 1.5kg (about 3 lbs) each, they were at very high risk of dying —however, it was absolutely incredible to see the way they were tucked in by the skilled team. Within an hour of delivery—they were in incubators with IVs, having their hypoglycemia corrected, and two out of three were on oxygen (all of them had their O2 saturations checked). The three babies were tucked in so calmly, with the finest skill and expertise neonatal care anywhere has to offer. In stark contrast to the first admissions I witnessed years ago, the nurses now knew exactly what to do and how to do it. As a result, they had saved many lives and restored hope among the mums of the region that there was somewhere to go to get help. This success resulted in a healthy swagger among the staff because they could intervene successfully.These were spontaneous triplets to this young mum, who already had three other children. She looked tired when she walked into the NICU one hour (yes one hour) after delivering the trio, but if I hadn't known prior, there was no way to know... (shrink)

Robert F. is an eighty-five-year-old who suffered a heart attack at home in a rural location some thirty minutes from any major hospital. By the time the paramedics arrived, he was unconscious and nonresponsive. After spontaneous return of circulation, they began their standard procedure of therapeutic hypothermia. Robert's core temperature was lowered using ice packs, and cold intravenous fluids were initiated. Soon afterward, Robert started to shiver when his body temperature reached 35.6° Celsius. He was then given a bolus (...) of vecuronium as a neuromuscular blockade, sedated, and intubated. He was also given a low-dose vasopressin for blood-pressure control. Shortly after Robert arrived in the emergency room, his daughter, his medical decision-maker, produced an advance directive documenting that her father has a do-not-resuscitate order, and she demanded that the breathing tube and any other life-sustaining treatments be withdrawn immediately. The medical staff is very reluctant to comply with this demand for immediate action. Until the neuromuscular blockade wears off, removing the ventilator will prevent Robert from breathing. Furthermore, it may take some time to reverse the therapeutic hypothermia procedure to the point that the patient is at normal temperature. In addition, therapeutic hypothermia itself often causes arrest, so the patient may need to be resuscitated again. Should the staff wait until the patient is warm or honor the decision of his daughter, who holds his medical power of attorney? (shrink)

In lieu of an abstract, here is a brief excerpt of the content:You Can't Say "No" to That!(A "Difficult Patient" Story)Ingrid BergAs a sequela of COVID-19, my rural Wisconsin hospital has been jam-packed for months with patients for whom we routinely provide care and many for whom we do not. An exodus of health care workers and other constraints have made the transfer of critically ill patients very difficult. In this disquieting "new-normal" of our work life, we routinely must (...) call bigger cities throughout our state to find beds for complex patients.So, it was not surprising when a young patient, an IV drug user in sepsis from a heart infection, was admitted to me in the middle of the night. In less disheartening times, before the pandemic, this patient would have been transferred promptly to the big-city hospital. Now, though, the possibility of finding an open bed is next to impossible. Resigned, I placed admission orders, continued antibiotics and fluids, and crossed my fingers. Then the unexpected happened: a bed opened up, and we could send her at once!The patient had a harsh heart murmur. It was likely that a "vegetation" was clinging to the valve, between the right upper and lower chambers of her heart. A vegetation is a clump of debris, such as platelets, clotting proteins, and bacteria that is a menace to the body. Her chest imaging looked like her infection had already spread to her lungs.A definitive diagnosis for endocarditis requires a special ultrasound with a probe that goes down through the esophagus, a procedure performed by cardiologists. It's a serious infection, one that requires weeks of IV antibiotics and is best monitored by infectious disease specialists. Sometimes, cardiothoracic surgeons are called upon to strip away the infection at the site, depending on how badly the valve has been slayed or the size of the vegetation. My only recommendation for a young, otherwise healthy patient in this scenario, is transfer.All of these reasons for transfer were lolling around in my tired head when the night-time [End Page 14] nursing supervisor approached me and said, "We have a problem." When the patient was updated about the transfer, she balked: "She says she is tired and refusing to go," the supervisor began. "She doesn't feel like getting into an ambulance in the middle of the night and she doesn't care if her condition is life-threatening. She knows we can't force her to go and she will only talk about it again in the morning."The cartoon version of myself at that moment had bugged-out eyes, a dropped jaw, fists tight and clenched at my sides, and steam coming out of my head. I can look past a patient's self-neglect, poor medication adherence, abysmal communication, alcohol and drug addiction, and other crimes. But saying no to a bed at a tertiary care facility? Unacceptable!I marched down the quiet hallway and into her room. She was lying on her side, facing the door, one IV in a thin arm. I was confident I could reason with her once I explained the scarcity of beds and the medical necessity of transfer. But she was having none of it. I was calm until I could no longer maintain my cool: "You can't give up this bed!""Maybe in the morning," she insisted, yawning. "But not now. I am tired and want to rest!""But there might not be a bed in the morning," I countered. "And your infection can be life-threatening." (This is true, but we both knew she wasn't dying at this very moment.)"I am not going anywhere!" She raised her voice and then closed her eyes.And she was right. I had no choice but to keep her. I could not kick her out of the hospital because she was making a poor choice, and I was frustrated for having to manage the fallout of that decision. Giving her antibiotics and fluid boluses to bolster her blood pressure was certainly within my scope of practice. And fretting. Fretting is always within my scope of practice; not that my scope of practice matters when all the big... (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Global Health Careers:Serving the Navajo CommunityMaricruz Merino, Jonathan Iralu, and Sonya ShinGallup Indian Medical Center (GIMC) sits on a hilltop in Gallup, New Mexico, a town of 20,000 in the four corners region of the Southwestern United States. From its third story windows one can see the red cliffs of the nearby Navajo Nation, a 27,000 square mile reservation that reaches into Arizona, northern New Mexico, and the southern (...) edges of Utah. It is a vast, rural landscape that houses more than 350,000 Navajos. For many on the reservation, healthcare is provided by Indian Health Service hospitals such as GIMC."Are you going to stay?" is a common question for new doctors at GIMC. The Navajo know that their geographic location, while beautiful and attractive to many young providers, will also be the reason they leave. It is hard for doctors to be away from their own homelands. Aging parents get sick, [End Page 86] educational opportunities arise, and children who need to be near extended family are born. But to the Navajo, the story of an individual provider is not so important or memorable. All they know is that providers come and go."Are you here to experiment on us?" is yet another question. Years of exploitation and efforts to destroy traditional ways and language have made many Navajo wary of healthcare providers, no matter how genuine their intentions. Many are so fearful of the hospital—they regard it as "the place to go die."Yet despite this initial suspicion, the Navajo are welcoming people at heart, and tend to develop relationships of trust with their providers. Parents will begin to talk about their grief over a son that has committed suicide or a daughter who died from alcoholic cirrhosis. The elderly will tell you how they care for their five orphaned grandchildren while they can barely take care of their own diabetes. A carpenter tells you he has not worked in a year and feels worthless. An HIV-positive woman will tell you she has been sleeping in a dry river bed because she has no place to go. It quickly becomes apparent that as a physician you will be treating patients with enormous social challenges in addition to complex medical conditions.The origins of the Federal Government's involvement in the healthcare of American Indians and Alaskan Natives (AI/ANs) in the 19th century arose out of both legal obligation and concern for self- preservation. Health services were promised to AI/ ANs in exchange for land, settlements, and agreements. In addition, infectious diseases endemic on reservations as a consequence of crowding and abject poverty, including smallpox and tuberculosis, were seen as a major public health concern. The responsibility of Native American health was first granted to the War Department, then to the Bureau of Indian Affairs, and finally to the Public Health Service in 1955 under the heading of the IHS, or Indian Health Service (U.S. Commission on Civil Rights, 2004; National Library of Medicine, 1994).Since then, the IHS has had many successes. Vaccination rates have gone up, and rates of pneumonia and tuberculosis have gone down significantly. Maternal and infant mortality have declined, and life expectancy has increased (Indian Health Services, 1999). Nonetheless, these improvements remain overshadowed by glaring health disparities among AI/ANs across a broad spectrum of diseases, both communicable and non-communicable, acute and chronic. Native Americans experience higher rates of obesity, diabetes, and cardiovascular disease than the general United States population. They are also more likely to die from alcohol-related causes and in accidents. Life expectancy remains more than five years less than that of the general U.S. population (U.S. Commission on Civil Rights, 2004; U.S. Department of Health and Human Services, 2000).Underlying these health indicators is the continued impoverished status of most AI/ANs. In Navajo, almost half of the population lives below the poverty line. According to the Navajo Nation, the current unemployment rate is 42% (Navajo Nation Department of Economic Development, 2011). Many Navajo on the reservation do not have running water or electricity. They heat with wood, which they chop and haul themselves—regardless... (shrink)