An exemplary model of genetic counselling for highly specialised services.

With genomic testing being increasingly integrated into every day clinical practice and a wide range of practitioners ordering genetic tests, it is important that the scope of the genetic counselling role continues to evolve alongside these changes. We present an exemplary role for genetic counsellors in a highly specialised service within England's National Health Service for people who have or are suspected to have rare genetic types of Ehlers Danlos syndrome. The service employs genetic counsellors and consultants from the fields of genetics and dermatology. The service also works closely with other specialists and related charities and patient organisations. The genetic counsellors in the service provide routine genetic counselling such as diagnostic and predictive testing, but their role also includes the writing of patient literature and emergency and well-being resources, delivering workshops and talks, and the development of qualitative and quantitative research on the patient experience. Data from such research has informed the development of patient self-advocacy and supportive resources, raised awareness amongst healthcare professionals and enhanced the standard of care and outcomes for patients. The service aims to be an example of innovation and accessibility and provides a model that can be potentially adopted by other highly specialised services of rare genetic diseases.

Being kind in unkind spaces: a qualitative examination of how medical educators and first year medical students perceive empathy training.

Introduction: It has become de rigueur for healthcare systems to tout their ability to provide compassionate medical care that addresses the emotional as well as physical needs of patients. Not surprisingly, then, there is considerable pressure on medical schools to train their students to be empathic. Existing literature on empathy training in medicine tends to focus on how to build emotional intelligence in individual trainees, largely ignoring the sociocultural factors that contribute to or thwart empathy development in medical school. Additionally, research tends to examine student perspectives, with little attention given to medical educators and their viewpoints. Methods: In this paper, we adopt an "emotion practice" framework and utilize an inductive descriptive study design to qualitatively consider how first year medical students (N = 23) and their instructors (N = 9) perceive empathy training at a site we call Midtown Medical School. Results and discussion: We find that both groups have an understanding of empathic capital but differ in their beliefs about the utility and legitimacy of this capital. Both educators and students also recognize the limitations of standardized empathy curriculum but do not agree on the implications of such rote learning. Finally, students and instructors alike find the hidden curriculum of medical school to be antithetical to empathy development, concurring that it is difficult to cultivate empathy in spaces where biomedical coursework is prioritized over social-emotional learning. In short, both groups find it difficult to be kind in an unkind place.

The direct and indirect effects of clinical empathy on well-being among pre-medical students: a structural equation model approach.

BACKGROUND: Empathy is a well-established facet of clinical competency that research suggests is associated with enhanced medical student well-being. Since little is known about empathy and well-being before students enter medical school-during pre-medical education-the main goal of this study is to test a conceptual model of how clinical empathy is related to two indicators of well-being, depression, and burnout among pre-medical students. The theoretical model hypothesizes that three dimensions of clinical empathy-Perspective-Taking, Compassionate Care, and Standing in Patients' Shoes- will be directly and negatively related to depression, as well as indirectly through its inverse relationship with three facets of burnout, Emotional Exhaustion, Poor Academic Efficacy, and Cynicism. METHODS: Using survey data from a sample of 132 pre-medical students at an American Midwestern university, this study employs structural equation modeling (SEM) to test the theoretical model of the relationships between empathy, burnout, and depression among pre-medical students. We identify the direct effects of the three dimensions of the Jefferson Scale of Physician Empathy (JSE-S) on depression (CES-D), as well as the indirect effects of clinical empathy on depression through the three dimensions of the Maslach Burnout Inventory (MBI-S). RESULTS: SEM analyses show that while none of the three dimensions of the JSE-S are directly related to depression, clinical empathy does significantly affect depression indirectly through burnout. Specifically, as predicted, we find that Perspective-Taking decreases Emotional Exhaustion, but, contrary to expectations, Compassionate Care increases it. And, the positive relationship between Compassionate Care and Emotional Exhaustion is particularly strong. In turn, Perspective-Taking and Compassionate Care are associated with depression in opposite directions and to different degrees. CONCLUSIONS: Findings suggest that clinical empathy as measured by the JSE-S produces both positive and negative effects on personal well-being. We conclude that further conceptual clarity of clinical empathy is needed to better discern how the different dimensions impact different indicators of well-being. Given that pre-medical education is a crucial time for emotional socialization, the challenge for medical education will be fostering the positive, cognitive aspects of clinical empathy while simultaneously mitigating the adverse effects of affective empathy on medical student well-being.

Understanding Hospice Patients' Beliefs About Their Life Expectancy: A Qualitative Interview Study.

BACKGROUND: Patients with advanced disease often overestimate their life expectancy, which potentially impacts decision making. OBJECTIVE: To examine the nature and source of hospice patients' life expectancy estimates, about which little is known. DESIGN: Using semi-structured interviews, patients were asked to estimate their life expectancy and elaborate on their response. SETTING/SUBJECTS: Participants were hospice patients (n = 20, 55% male; 60% cancer). MEASUREMENT: We conducted thematic analysis using open and focused coding. RESULTS: Many participants had difficulty answering the life expectancy question and expressed uncertainty about when they would die. One-third overestimated their length of life relative to actual survival. The most common source of patients' prognostic beliefs was knowledge about their body, including physical symptoms and change over time. Half of patients reported that a provider had given them a prognostic estimate, and one-third agreed with, or gave estimates consistent with, the provider's estimate. Some patients said providers do not know prognosis or that time of death was unknowable. CONCLUSIONS: Key findings were that 1) many hospice patients had difficulty estimating life expectancy, and 2) hospice patients' life expectancy estimates were frequently based on their body and not on information from medical providers. These findings have implications for measuring prognostic awareness, as valid assessment is a necessary component of determining whether prognostic awareness is beneficial for patients. Future research should examine how life expectancy estimates are associated with well-being and whether results extend to larger samples of patients with advanced disease not in hospice.

Revisiting 'awareness contexts' in the 21st century hospital: How fragmented and specialized care shape patients' Awareness of Dying.

In 1965, Glaser and Strauss (1965) offered the concept of "awareness contexts" to explain what patients in hospitals do or don't know about their death trajectories. Awareness ranges from closed (where patients are completely unaware and family and providers protect "the secret") to open (where all parties communicate openly and honestly). While closed awareness was the norm in 1960s, open awareness is now considered standard practice in US, a reflection of mounting evidence that patients, families, and providers benefit from clear and honest communication at end of life (Seale et al., 1997; Wright et al., 2008). Despite the known benefits of open awareness, many terminal patients remain unaware or confused about their prognoses (Chen et al., 2017). This paper asks why, in an era of open awareness, are patients and families uncertain about dying? To answer this question, we focus on an aspect of Glaser and Strauss's theory that remains relatively understudied by researchers, namely the role of institutional and organizational realities in shaping awareness contexts. Based on interviews with 43 family members of deceased patients who died at General Hospital in the Midwestern US, we argue that two related conditions in hospitals-the increased specialization of medical professionals and the fragmentation of patient care-serve as important context for the death awareness of patients and families.

Novel antibacterial targets and compounds revealed by a high-throughput cell wall reporter assay.

UNLABELLED: A high-throughput phenotypic screen based on a Citrobacter freundii AmpC reporter expressed in Escherichia coli was executed to discover novel inhibitors of bacterial cell wall synthesis, an attractive, well-validated target for antibiotic intervention. Here we describe the discovery and characterization of sulfonyl piperazine and pyrazole compounds, each with novel mechanisms of action. E. coli mutants resistant to these compounds display no cross-resistance to antibiotics of other classes. Resistance to the sulfonyl piperazine maps to LpxH, which catalyzes the fourth step in the synthesis of lipid A, the outer membrane anchor of lipopolysaccharide (LPS). To our knowledge, this compound is the first reported inhibitor of LpxH. Resistance to the pyrazole compound mapped to mutations in either LolC or LolE, components of the essential LolCDE transporter complex, which is required for trafficking of lipoproteins to the outer membrane. Biochemical experiments with E. coli spheroplasts showed that the pyrazole compound is capable of inhibiting the release of lipoproteins from the inner membrane. Both of these compounds have significant promise as chemical probes to further interrogate the potential of these novel cell wall components for antimicrobial therapy. IMPORTANCE: The prevalence of antibacterial resistance, particularly among Gram-negative organisms, signals a need for novel antibacterial agents. A phenotypic screen using AmpC as a sensor for compounds that inhibit processes involved in Gram-negative envelope biogenesis led to the identification of two novel inhibitors with unique mechanisms of action targeting Escherichia coli outer membrane biogenesis. One compound inhibits the transport system for lipoprotein transport to the outer membrane, while the other compound inhibits synthesis of lipopolysaccharide. These results indicate that it is still possible to uncover new compounds with intrinsic antibacterial activity that inhibit novel targets related to the cell envelope, suggesting that the Gram-negative cell envelope still has untapped potential for therapeutic intervention.

High-Throughput Hit Screening Cascade to Identify Respiratory Syncytial Virus (RSV) Inhibitors.

Respiratory syncytial virus (RSV) infects 99% of children by age 2 years and is a leading cause of serious lower respiratory tract infection (LRTI) and infant hospitalization in the United Kingdom. Identification of efficacious RSV therapeutics has been hindered by the lack of a robust and appropriate primary assay for high-throughput screening (HTS). Here we report an HTS cascade that identified inhibitors of RSV replication using a robust RSV replicon luminescence-reporter assay for the primary campaign. The performance of the assay was consistent and reliable at scale, with Z' of 0.55 ± 0.08 across 150 assay plates and signal-to-background ratios >40. The HTS assay was used to screen the AstraZeneca compound library of 1 million compounds at a single concentration of 10 µM. Hits specifically targeting the RSV replicon were determined using a series of hit generation assays. Compounds nonspecifically causing cell toxicity were removed, and hits were confirmed in live viral inhibition assays exhibiting greater physiological relevance than the primary assay. In summary, we developed a robust screening cascade that identified hit molecules that specifically targeted RSV replication.

Demanding patient or demanding encounter?: A case study of a cancer clinic.

This paper explores the sociological relevance of demanding encounters between doctors and patients. Borrowing from Potter and McKinlay's [(2005). From a relationship to encounter: an examination of longitudinal and lateral dimensions in the doctor-patient relationship. Social Science & Medicine, 61, 465-479] reconceptualization of the doctor-patient relationship, we suggest an analytic shift away from 'demanding patients' toward 'demanding encounters'. Such a shift places provider-patient conflict within a broader socio-cultural context, emphasizing constraints facing both doctor and patient as they interact in a clinical setting. Specifically, through an ethnographic study of doctor-patient interactions at the oncology clinic of a US University Hospital, we examine the respective influences of new information technologies and patient consumerism in the production of demanding encounters in oncology. Findings suggest that these interconnected socio-cultural realities, in tandem with patient tendencies to challenge physician judgment or expertise, play a role in demanding encounters. We conclude by considering the implications of demanding encounters for doctors, patients and healthcare organizations.

Social stigma and the dilemmas of providing care to substance users in a safety-net emergency department.

There has been increasing interest in how social stigma affects health care delivery to vulnerable patients but few examples of the dilemmas that may arise for providers who care for stigma-vulnerable populations. Using qualitative data, the authors examine care delivery in a safety-net emergency department where many patients were socially disadvantaged and vulnerable to stigma because of substance use problems. Analysis of our data revealed five themes related to the dilemmas of providing care for this patient population: 1) providers valued assisting vulnerable and underserved patients; 2) providers' interactions with patients could be challenging; 3) providers did not know if substance involved patients provided accurate medical histories; 4) providers were concerned about drug-seeking behavior; and 5) providers had to balance substance-involved patients' needs with the necessity of managing limited resources. We discuss how these themes relate to care dynamics and social stigma in the safety-net setting.

Beyond cultural competency: Bourdieu, patients and clinical encounters.

In response to widely documented racial and ethnic disparities in health, clinicians and public health advocates have taken great strides to implement 'culturally competent' care. While laudable, this important policy and intellectual endeavour has suffered from a lack of conceptual clarity and rigour. This paper develops a more careful conceptual model for understanding the role of culture in the clinical encounter, paying particular attention to the relationship between culture, contexts and social structures. Linking Bourdieu's (1977) notion of 'habitus' and William Sewell's (1992) axioms of multiple and intersecting structures, we theorise patient culture in terms of 'hybrid habitus'. This conceptualisation of patient culture highlights three analytical dimensions: the multiplicity of schemas and resources available to patients, their specific patterns of integration and application in specific contexts, and the constitutive role of clinical encounters. The paper concludes with a discussion of directions for future research as well as reforms of cultural competency training courses.

Finding dignity in dirty work: the constraints and rewards of low-wage home care labour.

The ageing of the population in the US and elsewhere raises important questions about who will provide long-term care for elderly and disabled people. Current projections indicate that home care workers--most of whom are unskilled, untrained and underpaid--will increasingly absorb responsibility for care. While research to date confirms the demanding aspects of the work and the need for improved working conditions, little is known about how home care workers themselves experience and negotiate their labour on a daily basis. This paper attempts to address this gap by examining how home care workers assign meaning to their 'dirty work'. Qualitative interviews suggest that home care workers have a conflicted, often contradictory, relationship to their labour. Workers identify constraints that compromise their ability to do a good job or to experience their work as meaningful, but they also report several rewards that come from caring for dependent adults. I suggest workers draw dignity from these rewards, especially workers who enter home care after fleeing an alienating service job, within or outside the healthcare industry.