Language in Bioethics: Beyond the Representational View.

Though assumptions about language underlie all bioethical work, the field has rarely partaken of theories of language. This article encourages a more linguistically engaged bioethics. We describe the tacit conception of language that is frequently upheld in bioethics-what we call the representational view, which sees language essentially as a means of description. We examine how this view has routed the field's theories and interventions down certain paths. We present an alternative model of language-the pragmatic view-and explore how it expands and clarifies traditional bioethical concerns. To lend concreteness, we apply the pragmatic view to a pervasive concept in bioethics and adjacent fields: decision making. We suggest that problems of the decision-making approach to bioethical issues are grounded in adherence to the representational view. Drawing on empirical work in surgery and critical care, we show how the pragmatic view productively reframes bioethical questions about how medical treatments are pursued.

Breaching Confidentiality in Genetic and Non-Genetic Cases: Two Problematic Distinctions.

Ethical questions about confidentiality arise when patients refuse to inform relatives who are at risk of a genetic condition. Specifically, healthcare providers may struggle with the permissibility of breaching confidentiality to warn patients' at-risk relatives. In exploring this issue, several authors have converged around the idea that genetic cases differ from non-genetic cases (e.g., involving a threat of violence or the spread of an infectious disease) along two related dimensions: (1) In genetic cases, the risk of harm is already present in an at-risk third party, whereas in non-genetic cases, it is not; and (2) In genetic cases, the patient does not create a risk of harm to a third party, whereas in non-genetic cases, the patient does. I argue that these distinctions do not exclusively differentiate genetic from non-genetic cases and should not bear on the permissibility of breaching confidentiality. Instead, such determinations should be based on other considerations.

Cost-Related Non-Adherence to Prescribed Medicines: What Are Physicians' Moral Duties?

As the price of pharmaceuticals and biologicals rises so does the number of patients who cannot afford them. In this article, we argue that physicians have a moral duty to help patients access affordable medicines. We offer three grounds to support our argument: (i) the aim of prescribing is to improve health and well-being which can only be realized with secure access to treatment; (ii) there is no morally significant difference between medicines being unavailable and medicines being unaffordable, so the steps physicians are willing to take in the first case should extend to the second; and (iii) as the primary stakeholder with a duty to put the individual patient's interests first, the medical professional has a duty to address cost-barriers to patient care. In articulating this duty, we take account of important epistemic and control conditions that must be met for the attribution of this duty to be justified.

The roles of the dietitian in an 18-week telephone and mobile application nutrition intervention for upper gastrointestinal cancer: a qualitative analysis.

PURPOSE: This study aimed to explore the patient-dietitian experience during an 18-week nutrition counselling intervention delivered using the telephone and a mobile application to people newly diagnosed with upper gastrointestinal (UGI) cancer to (1) elucidate the roles of the dietitian during intervention delivery and (2) explore unmet needs impacting nutritional intake. METHODS: Qualitative case study methodology was followed, whereby the case was the 18-week nutrition counselling intervention. Dietary counselling conversations and post-intervention interviews were inductively coded from six case participants which included fifty-one telephone conversations (17 h), 244 written messages, and four interviews. Data were coded inductively, and themes constructed. The coding framework was subsequently applied to all post-study interviews (n = 20) to explore unmet needs. RESULTS: Themes describing the roles of the dietitian were as follows: regular collaborative problem-solving to encourage empowerment, a reassuring care navigator including anticipatory guidance, and rapport building via psychosocial support. Psychosocial support included provision of empathy, reliable care provision, and delivery of positive perspective. Despite intensive counselling from the dietitian, nutrition impact symptom management was a core unmet need as it required intervention beyond the scope of practice for the dietitian. CONCLUSION: Delivery of nutrition care via the telephone or an asynchronous mobile application to people with newly diagnosed UGI cancer required the dietitian to adopt a range of roles to influence nutritional intake: they empower people, act as care navigators, and provide psychosocial support. Limitations in dietitians' scope of practice identified unmet patient's needs in nutrition impact symptom management, which requires medication management. TRIAL REGISTRATION: 27th January 2017 Australian and New Zealand Clinical Trial Registry (ACTRN12617000152325).

Affect, Values and Problems Assessing Decision-Making Capacity.

The dominant approach to assessing decision-making capacity in medicine focuses on determining the extent to which individuals possess certain core cognitive abilities. Critics have argued that this model delivers the wrong verdict in certain cases where patient values that are the product of mental disorder or disordered affective states undermine decision-making without undermining cognition. I argue for a re-conceptualization of what it is to possess the capacity to make medical treatment decisions. It is, I argue, the ability to track one's own personal interests at least as well as most people can. Using this idea, I demonstrate that it is possible to craft a solution for the problem cases-one that neither alters existing criteria in dangerous ways (e.g. does not open the door to various kinds of abuse) nor violates the spirit of widely accepted ethical constraints on decision-making assessment.

Ethical Issues in Using Behavior Contracts to Manage the "Difficult" Patient and Family.

Long used as a tool for medical compliance and adhering to treatment plans, behavior contracts have made their way into the in-patient healthcare setting as a way to manage the "difficult" patient and family. The use of this tool is even being adopted by healthcare ethics consultants (HECs) in US hospitals as part of their work in navigating conflict at the bedside. Anecdotal evidence of their increasing popularity among clinical ethicists, for example, can be found at professional bioethics meetings and conversations and idea-sharing among practitioners on HEC social media. While there are a handful of papers gesturing toward a bioethical critique of behavior contracts of various types, the use of behavior contracts in the context of interpersonal conflict has not been vetted by bioethicists to determine their ethical legitimacy or efficacy. In this paper, we highlight a set of ethical concerns that we believe must be addressed before continuing or widespread implementation of behavior contracts to manage the "difficult" patient or family.

Harmful Choices, the Case of C, and Decision-Making Competence.

In this paper, we make the case that a person who is considering or has already made a decision that appears seriously harmful to that person should in some cases be judged incapable of making that decision because of the harmfulness of the decision. We focus on the English case of C of 2015. C refused life-saving dialysis. The hospital wanted her declared incompetent to make this decision under the English Mental Capacity Act of 2005. The Judge argued that the consequences for a person's welfare of their decision are irrelevant to the assessment of competence, a position labeled "internalism." This aligns with an assessment of decision-making competence on a strictly cognitivist model. However, internalism misrepresents decision-making. The outcomes of decision-making processes should be part and parcel of judgments of decision-making competence, and in some cases are necessary for any judgment of incompetence to be made.

Postponed Withholding: Balanced Decision-Making at the Margins of Viability.

Advances in neonatology have led to improved survival for periviable infants. Immaturity still carries a high risk of short- and long-term harms, and uncertainty turns provision of life support into an ethical dilemma. Shared decision-making with parents has gained ground. However, the need to start immediate life support and the ensuing difficulty of withdrawing treatment stands in tension with the possibility of a fair decision-making process. Both the parental "instinct of saving" and "withdrawal resistance" involved can preclude shared decision-making. To help health care personnel and empower parents, we propose a novel approach labeled "postponed withholding." In the absence of a prenatal advance directive, life support is started at birth, followed by planned redirection to palliative care after one week, unless parents, after a thorough counseling process, actively ask for continued life support. Despite the emotional challenges, this approach can facilitate ethically balanced decision-making processes in the gray zone.

Trauma Informed Ethics Consultation.

We argue for the addition of trauma informed awareness, training, and skill in clinical ethics consultation by proposing a novel framework for Trauma Informed Ethics Consultation (TIEC). This approach expands on the American Society for Bioethics and Humanities (ASBH) framework for, and key insights from feminist approaches to, ethics consultation, and the literature on trauma informed care (TIC). TIEC keeps ethics consultation in line with the provision of TIC in other clinical settings. Most crucially, TIEC (like TIC) is systematically sensitive to culture, history, difference, power, social exclusion, oppression, and marginalization. By engaging a neonatal intensive care ethics consult example, we define our TIEC approach and illustrate its application. Through TIEC we argue it is the role of ethics consultants to not only hold open moral spaces, but to furnish them in morally habitable ways for all stakeholders involved in the ethics consultation process, including patients, surrogates, and practitioners.

An exploratory study of client and provider experience and perceptions of facility-based childbirth care in Quiché, Guatemala.

INTRODUCTION: Respectful maternity care (RMC) is fundamental to women's and families' experience of care and their decision about where to give birth. Studies from multiple countries describe the mistreatment of women during facility-based childbirth, though only a small number of studies from Guatemala have been published. Less information is available on women's negative and positive experiences of childbirth care and health workers' perceptions and experiences of providing maternity care. METHODS: As part of a program implemented in the Western Highlands of Guatemala to improve quality of reproductive maternal newborn and child health care, a mixed methods assessment was conducted in three hospitals and surrounding areas to understand women's and health workers' experience and perceptions of maternity care. The quantitative component included a survey of 31 maternity health workers and 140 women who had recently given birth in these hospitals. The qualitative component included in-depth interviews (IDIs) and focus group discussions (FGDs) with women and maternity health workers and managers. RESULTS: Women reported a mix of positive and negative experiences of childbirth care related to interpersonal and health system factors. 81% of surveyed women reported that health workers had treated them with respect while 21.4% of women reported verbal abuse. Fifty-five percent and 12% of women, respectively, reported not having access to a private toilet and bath or shower. During IDIs and FGDs, many women described higher rates of verbal abuse directed at women who do not speak Spanish. A regression analysis of survey results indicated that speaking Ixil or K'iche at home was associated with a higher likelihood of women being treated negatively during childbirth in a facility. Health worker survey results corroborated negative aspects of care described by women and also reported mistreatment of health workers by clients and families (70.9%) and colleagues (48.2%). CONCLUSIONS: This study adds to the literature on women's experience of institutional childbirth and factors that influence this experience by triangulating experience and perceptions of both women and health workers. This assessment highlights opportunities to address mistreatment of both women and health workers and to build on positive care attributes to strengthen RMC for all women.

Deception and the Clinical Ethicist.

In this article, I defend a discomfiting thesis: The clinical ethicist should sometimes be an active participant in the deception of patients and families. The case for this conclusion builds off Sissela Bok's seminal analysis of lying, from which I emphasize that, despite some common intuitions to the contrary, there is prima facie no morally relevant difference between lies of omission and commission. I then discuss deception's prevalence in medical encounters, noting that the ethicist is often embedded in corresponding decisions, and explicate the realities that underlie these tough cases. Among those realities is the fallacy that deception can always be avoided through better communication. I conclude with an elaboration of ethicists' role-model status and argue that they can turn the deception into a powerful teaching moment about the complexity of ethics reasoning.

Sick-listed workers' experiences with motivational interviewing in the return to work process: a qualitative interview study.

BACKGROUND: When returning to work after being on long-term sick leave, individuals may experience varying levels of motivation and self-efficacy. Motivational interviewing (MI) is a counseling style that aims to increase motivation towards change, and it may be useful in the return to work (RTW) process. The aim of this study was to explore sick-listed workers' experiences with MI in the RTW process. METHODS: This qualitative study was part of a randomized controlled trial evaluating the effects of MI on the RTW process, and it was administered by caseworkers at the Norwegian Labor and Welfare Administration. Sixteen sick-listed individuals, aged 33-60, participated in semi-structured interviews. All had a sick leave status of 50-100% for at least 8 weeks when interviewed and all had completed 2 MI sessions. The data was analyzed with systematic text condensation. RESULTS: Participants' experiences of the MI sessions were categorized into three themes: (1) relationship with the MI caseworker, (2) normalizing sick leave, and (3) adjusting RTW strategies. The MI sessions were experienced as a positive encounter due to the supportive relationship that was built between the MI caseworker and the sick-listed worker. Being sick listed led to feelings of guilt and stigmatization, but acceptance and support from the MI caseworkers helped normalize the situation for the sick-listed workers. Furthermore, MI sessions allowed for personalized feedback and discussions on adjustments to their RTW strategies. CONCLUSION: Sick-listed workers experienced MI as positive due to the good relationship that developed with the MI caseworker, how this normalized sick leave, and the help they received with adjusting their RTW strategies. Professionals working with individuals attempting to RTW may benefit from using MI as a method for helping sick-listed workers to RTW. TRIAL REGISTRATION: ClinicalTrials.gov: NCT03212118 (registered July 11, 2017).

What the HEC-C? An Analysis of the Healthcare Ethics Consultant-Certified Program: One Year in.

Efforts to professionalize the field of bioethics have led to the development of the Healthcare Ethics Consultant-Certified (HEC-C) Program intended to credential practicing healthcare ethics consultants (HCECs). Our team of professional ethicists participated in the inaugural process to support the professionalization efforts and inform our views on the value of this credential from the perspective of ethics consultants. In this paper, we explore the history that has led to this certification process, and evaluate the ability of the HEC-C Program to meet the goals it has set forth for HCECs. We describe the benefits and weaknesses of the program and offer constructive feedback on how the process might be strengthened, as well as share our team's experience in preparing for the exam.

Patients' experiences of seeking help for emotional concerns in primary care: doctor as drug, detective and collaborator.

BACKGROUND: NICE guidelines for the management of emotional concerns in primary care emphasise the importance of communication and a trusting relationship, which is difficult to operationalise in practice. Current pressures in the NHS mean that it is important to understand care from a patient perspective. This study aimed to explore patients' experiences of primary care consultations for emotional concerns and what patients valued when seeking care from their GP. METHODS: Eighteen adults with experience of consulting a GP for emotional concerns participated in 4 focus groups. Data were analysed thematically. RESULTS: (1) Doctor as Drug: Patients' relationship with their GP was considered therapeutic with continuity particularly valued. (2) Doctor as Detective and Validator: Patients were often puzzled by their symptoms, not recognising their emotional concerns. GPs needed to play the role of detective by exploring not just symptoms, but the person and their life circumstances. GPs were crucial in helping patients understand and validate their emotional concerns. (3) Doctor as Collaborator: Patients prefer a collaborative partnership, but often need to relinquish involvement because they are too unwell, or take a more active role because they feel GPs are ill-equipped or under too much pressure to help. Patients valued: GPs booking their follow up appointments; acknowledgement of stressful life circumstances; not relying solely on medication. CONCLUSIONS: Seeking help for emotional concerns is challenging due to stigma and unfamiliar symptoms. GPs can support disclosure and understanding of emotional concerns by fully exploring and validating patients' concerns, taking into account patients' life contexts. This process of exploration and validation forms the foundation of a curative, trusting GP-patient relationship. A trusting relationship, with an emphasis on empathy and understanding, can make patients more able to share involvement in their care with GPs. This process is cyclical, as patients feel that their GP is caring, interested, and treating them as a person, further strengthening their relationship. NICE guidance should acknowledge the importance of empathy and validation when building an effective GP-patient partnership, and the role this has in supporting patients' involvement in their care.

A mixed methods systematic review of the effects of patient online self-diagnosing in the 'smart-phone society' on the healthcare professional-patient relationship and medical authority.

BACKGROUND: As technology continues to advance, the internet is becoming increasingly popular. Self-diagnosis and health information seeking online is growing more common and it will be important to understand the influence this may have on the patient-healthcare professional relationship. METHODS: A mixed-method systematic review of quantitative, qualitative and mixed method studies concerning the public and healthcare professionals' perceptions of online self-diagnosis and health information seeking and how this can impact the patient-healthcare professional relationship. We searched MEDLINE, EMBASE, CINAHL, ACM & SCOPUS between 2007 and 2018. Relevant data were extracted, and a thematic analysis was conducted and conceptualised using the Normalisation Process Theory framework. RESULTS: Of 6107 records identified, 25 articles met the review eligibility criteria which included 16 qualitative, 8 quantitative and 1 mixed method study. The findings indicated that patients found the internet as a complementary information source alongside healthcare professionals. Health care professionals were perceived to be the most reliable and valued information source. People feel responsible for their own health and find the internet to be a source that provides information rapidly with accessibility at their convenience. Most healthcare professionals agreed on the importance of collaboration with patients and the need to develop a partnership and shared decision-making process but struggled to find time in the consultation to do so efficiently. Some healthcare professionals felt that the internet was advantageous for patients looking after their own health, while others felt it was due to a lack of trust in their expertise. Patients tended to present information to the healthcare professional to support the therapeutic relationship rather than to challenge it and to become more involved in the decision-making process of their healthcare. CONCLUSION: The results of this review suggests that patients value healthcare professionals as a source of medical advice more than the internet. While health professionals' views were mixed our findings indicate that online health information seeking can potentially improve the patient-healthcare professional relationship as patients reported they usually conducted an online search to form a partnership with the healthcare professional as opposed to trying to prove them wrong.

Everything I Really Needed to Know to Be a Clinical Ethicist, I Learned From Elisabeth Kübler-Ross.

I analyze the insights present in Elisabeth Kübler-Ross's seminal work, On Death and Dying that have laid the foundation for contemporary clinical bioethics as it is practiced by clinical ethics consultants. I highlight the landmark insight of Elisabeth Kübler-Ross that listening to dying patients reveals their needs and enables them to enjoy a better death. But more important for contemporary clinical ethics is that the text highlights three tensions that the clinical ethicist must navigate but can never truly resolve. Clinical ethicists must balance: (1) the need to hear the patient's voice with the temptation to overly medicalize the case, (2) helping the patient achieve a better death with enabling the patient to die in the way he or she chooses, and (3) keeping professional distance with engaging the patient in a way that respects the intimacy of the patient's disclosures.

Intersectionality in Clinical Medicine: The Need for a Conceptual Framework.

Intersectionality has become a significant intellectual approach for those thinking about the ways that race, gender, and other social identities converge in order to create unique forms of oppression. Although the initial work on intersectionality addressed the unique position of black women relative to both black men and white women, the concept has since been expanded to address a range of social identities. Here we consider how to apply some of the theoretical tools provided by intersectionality to the clinical context. We begin with a brief discussion of intersectionality and how it might be useful in a clinical context. We then discuss two clinical scenarios that highlight how we think considering intersectionality could lead to more successful patient-clinician interactions. Finally, we extrapolate general strategies for applying intersectionality to the clinical context before considering objections and replies.

The Rise of Citizen Science in Health and Biomedical Research.

Citizen science models of public participation in scientific research represent a growing area of opportunity for health and biomedical research, as well as new impetus for more collaborative forms of engagement in large-scale research. However, this also surfaces a variety of ethical issues that both fall outside of and build upon the standard human subjects concerns in bioethics. This article provides background on citizen science, examples of current projects in the field, and discussion of established and emerging ethical issues for citizen science in health and biomedical research.

Reweighing the Ethical Tradeoffs in the Involuntary Hospitalization of Suicidal Patients.

Suicide is the 10th leading cause of death in the United States and the second cause of death among those ages 15-24 years. The current standard of care for suicidality management often involves an involuntary hospitalization deemed necessary by the attending psychiatrist. The purpose of this article is to reexamine the ethical tradeoffs inherent in the current practice of involuntary psychiatric hospitalization for suicidal patients, calling attention to the often-neglected harms inherent in this practice and proposing a path for future research. With accumulating evidence of the harms inherent in civil commitment, we propose that the relative value of this intervention needs to be reevaluated and more efficacious alternatives researched. Three arguments are presented: (1) that inadequate attention has been given to the harms resulting from the use of coercion and the loss of autonomy, (2) that inadequate evidence exists that involuntary hospitalization is an effective method to reduce deaths by suicide, and (3) that some suicidal patients may benefit more from therapeutic interventions that maximize and support autonomy and personal responsibility. Considering this evidence, we argue for a policy that limits the coercive hospitalization of suicidal individuals to those who lack decision-making capacity.

Wishing to be perceived as a capable and resourceful person-A qualitative study of melanoma patients' experiences of the contact and interaction with healthcare professionals.

AIMS AND OBJECTIVES: To explore patients' experiences of contact and interaction with healthcare professionals (HCPs) during the diagnostic process of melanoma. BACKGROUND: In Sweden, most patients with suspected skin lesions seek care at the primary level of services in the first instance. Previous research describes the diagnostic process as a complex journey with uncertainty. Nonetheless, the importance of contact and interaction between patient and HCPs during the diagnostic process is rarely explored. DESIGN: This study adopted a qualitative design in which semi-structured interviews were conducted and the COREQ-checklist for qualitative studies employed (EQUATOR guidelines). METHODS: A sample of 30 patients (15 women, 15 men) diagnosed with melanoma was included. Secondary analysis of interviews was carried out using qualitative content analysis. RESULTS: One theme emerged: Wishing to be perceived as a capable and resourceful person that consisted of three categories: (a) The need of being valued, (b) The need of being informed and (c) The need of taking actions. CONCLUSIONS: Our results suggest that patients wish to be valued as capable and resourceful persons as well as to be provided with honest and sufficient information about the diagnosis and subsequent procedures. By fulfilling these wishes, HCPs can involve patients in the diagnostic process and reduce patients' uncertainty. A need of supportive and accessible health care to manage the diagnostic process and to reduce patients' struggle for care was also identified. RELEVANCE TO THE CLINICAL PRACTICE: Patients are satisfied when health care is organised in a patient-/person-centred manner, that is, in accordance with patients' needs, avoiding gatekeeping, and when HCPs interact respectfully in encounters. Accessible HCPs during the diagnostic process of melanoma are required to inform, support and navigate patients within the healthcare system and through their diagnostic journey.