Protecting Personhood: A Classic Grounded Theory.

The importance of perceiving and considering patients as healthcare partners has been increasingly promoted. Healthcare systems around the world are now highly interested in patient engagement, participation, collaboration, and partnership. Healthcare professionals are advised that patients, as autonomous beings, should be active in and responsible for a portion of their own care. The study presented here focused on patients' perceptions of interprofessional collaboration. It was conducted using the classic grounded theory methodology. The theory of protecting personhood emerged as the core concept of hospitalized patients, cared for by interprofessional healthcare teams. This theory encapsulates the process hospitalized patients go through to find balance in their sense of self, oscillating between personhood and patienthood in the unfamiliar hospital environment. The process consists of four stages: the stage of introspection, during which hospitalized patients become aware of their self as a person and as a patient; the stage of preservation, when patients find a balance between the sense of personhood and patienthood; the stage of rupture, wherein patients experience an imbalance between their sense of personhood and patienthood; and the stage of reconciliation, in which personhood is restored. The theory of protecting personhood offers insights into a better understanding of hospitalized patients' experiences and strategies, revealing the importance of relationships, and the driving force of empowerment. This study is about patients' perspectives of interprofessional healthcare teams. A grounded theory process allowed the emergence of patients' concerns and expectations, leading to a substantive theory grounded in the patients' data.

The significance of Emmanuel Levinas' ethics of responsibility for medical judgment.

At a time when the practice of medicine is subject to technical and biopolitical imperatives that give rise to defensive bioethics, it is essential to revitalize the ethical dimensions of care at the very heart of the clinic, in order to give new meaning to the moral responsibility that inhabits it. This contribution seeks to meet this challenge by drawing on the ethical resources of the work of Emmanuel Levinas. In Levinas' view, ethical responsibility is the response to the injunction, the interpellation, of the other's face, and humaneness is conceived entangled in the other's face. Against this background, I suggest that Levinas' philosophical insight constitutes a turning point from a traditional to a new conception of responsibility that may bear great significance to a renewed understanding of an hermeneutics and an ethics of care. By drawing on this aspect of Levinas' thought, I would like to reveal the ethical core of an ethics of clinical care that shapes a new insight on medical judgment.

Ethical issues in public health communication: Practical suggestions from a qualitative study on campaigns about organ donation in Switzerland.

OBJECTIVES: In Switzerland, in spite of a positive attitude towards organ donation, the population seems to overlook the public health messages about it. Based on a qualitative study on campaigns about organ donation, the article aims to give practical suggestions to prevent undesirable effects in public health communication. METHODS: The study provides a linguistic analysis of the messages about organ donation produced by the Swiss Federal Office of Public Health. Such a method enables us to understand who communicates what, to whom, how and what for, and gives us empirical data to discuss ethical concerns in relation to the effects of public health messages. RESULTS: The analysis shows that the messages, apart from those relying on the expertise of healthcare professionals, are based on the representation of lay persons. The latter strategy generates the depiction of imagined communities. CONCLUSIONS: Beyond the usual concerns relating to organ donation (e.g., consent, altruism), the analysis of FOPH messages indicates that ethical issues in public health communication are grounded on three relational dimensions (intersubjectivity, cooperation and equity). PRACTICE IMPLICATIONS: A procedure assessing the ethical concerns of public health communication in terms of social identities and relational consequences could identify and prevent problems relating to the undesirable effects of messages. AVAILABILITY OF DATA AND MATERIALS: The datasets used and analysed during the current study are available from the corresponding author upon reasonable request.

Patients' perspectives on interprofessional collaboration between health care professionals during hospitalization: a qualitative systematic review.

OBJECTIVE: The objective of this review was to gain a better understanding of the interprofessional collaboration between health care professionals from the patients' point of view during hospitalisation; the influence of interprofessional collaboration on patient care, safety, and well-being; and patients' perspectives of their role in the interprofessional collaboration process. INTRODUCTION: Interprofessional collaboration is a key factor in improving patient health care outcomes and safety through better communication between health care professionals, better teamwork, and better care coordination. However, implementing interprofessional collaboration in the clinical setting can prove complex. Patients are increasingly interested in becoming partners within the health care system. They have the potential to contribute to their own safety and to observe professionals during the care process, thus gaining a better understanding of the interprofessional collaboration process and facilitating changes in the behavior of health care professionals. INCLUSION CRITERIA: This review considered qualitative research and mixed-method studies. Participants were hospitalized patients. Studies were included when they explored i) patients' perceptions of interprofessional collaboration, ii) the influence of interprofessional collaboration on patients' care, safety, or well-being, or iii) patients' perceptions of their own role in interprofessional collaboration. Qualitative studies focusing only on the care process or families' points of view were excluded. METHODS: Searches of six databases including MEDLINE, CINAHL, Embase, Web of Science, PsycINFO, and Sociological Abstract, limited to English, French, and German were conducted from March 2017 to June 2018. Assessment of methodological quality of studies was performed using the JBI Qualitative Assessment and Review Instrument. Data were extracted using the standardized data extraction tool from JBI. Data synthesis following the JBI approach of meta-aggregation was performed. The level of confidence for each synthesized finding was established based on ConQual. RESULTS: A total of 22 studies were included, which resulted in 89 findings and 24 categories. Eight synthesized findings were generated: patients' perceptions of interprofessional collaboration based on personal experiences and observations; patients' experiences with effective or ineffective interprofessional communication; patients' experience with power imbalance and paternalistic attitudes; patients' perceptions of key factors for a confident relationship with the interprofessional health care team; patients' need for comprehension of discussions between health care professionals; patients' perceptions of their role in an interprofessional health care team; patients' perceptions of opportunities for empowerment in interprofessional health care teams; and patients' need for humanizing care from interprofessional health care teams. The level of confidence of synthesized findings varied from low to moderate according to ConQual. CONCLUSIONS: This systematic review synthesized the perspectives of hospitalized patients regarding interprofessional collaboration and their perceived role in collaborative practices. Hospitalized patients observe interprofessional collaboration, either directly or indirectly, and the way interprofessional collaboration is performed may impact both their care and their well-being. However, little evidence has been found regarding the impact of interprofessional collaboration on patient safety. Patients' perspectives on their perceived role is not unanimous; some patients want to play an active role in the collaborative process, whereas others prefer to trust the health care professionals' expertise. Health care professionals should consider patients' preferences and act accordingly regarding both the collaborative process and the inclusion of the patients in collaborative practices.

[« Living facing death' : improving Lausanne's medical students ¼ attitude toward end-of-life issues]. / Vivre face à la mort : faire prendre du recul à des étudiants de médecine lausannois.

The optional course « Living facing death ¼ is the result of an innovative educational approach jointly developed by CHUV's Palliative Care Service, Lausanne's School of Medicine, Medical Ethics Unit and the students' association « Doctors & Death ¼. It is intended for 3rd and 4th grade medical students and was inspired by previous experiences conducted at Harvard Medical School. Its primary objective is to help students to « take some distances ¼. A mixed quantitative/qualitative satisfaction questionnaire was administered to all participating students at the completion of the course. It confirms experiential knowledge is a valuable teaching tool to improve medical students' attitude toward end-of-life issues.

Le cours à option « Vivre face à la mort ¼ a été développé conjointement par le Service de soins palliatifs du CHUV, l'Ecole de médecine de Lausanne, l'Unité d'éthique et l'association d'étudiants Doctors and Death, en s'inspirant de réflexions pédagogiques menées à Harvard. Il est destiné à des étudiants de médecine de 3e et 4e années et utilise des outils pédagogiques novateurs pour leur permettre de « prendre de la distance ¼. Il est le résultat d'une démarche pédagogique structurée, présentée dans l'article. Une évaluation mixte quantitative/qualitative de la satisfaction des étudiants confirme que l'utilisation de l'experiential knowledge autorise un changement d'attitude des étudiants face aux enjeux de la finitude.

"Still Rather Hazy at Present": Citizens' and Physicians' Views on Returning Results from Biobank Research Using Broad Consent.

AIMS: Informed consent and return of research results are among the most debated topics in the biobank literature. We discuss ethical, social, and policy issues associated with returning results in the context of biobanks using a broad consent approach, in the light of data from a qualitative survey of citizens' and physicians' views. MATERIALS AND METHODS: Data were collected through interviews and focus groups to investigate stakeholders' perspectives about a large-scale hospital-based biobank designed to foster biomedical research, including prospective genomics research, and "personalized" medicine. RESULTS: Both physicians and citizens considered psychosocial impacts as crucial in the assessment of benefits expected from a return of results to biobank participants. In particular, physicians highlighted the possible consequences on the patient-doctor relationship and discussed implications for the concept of "personalized" medicine. Citizens held ambivalent attitudes toward returning individual research results: they defended the "right not to know," while they also considered a sort of "responsibility to know" because of potential implications of results for family members. Moreover, physicians and citizens raised questions about the broad consent model used for inhospital biobank recruitment and expressed their needs for more training in genomics and more information on the biobank initiative. CONCLUSIONS: Stakeholders such as citizens and physicians, who may be concerned as potential biobank participants or as healthcare professionals involved in the management of clinically relevant research results, provide useful insights into several aspects of broad consent and return of results, related in particular to the interface between research and the clinic.

Assessing an Adolescent's Capacity for Autonomous Decision-Making in Clinical Care.

The purpose of this article is to provide policy guidance on how to assess the capacity of minor adolescents for autonomous decision-making without a third party authorization, in the field of clinical care. In June 2014, a two-day meeting gathered 20 professionals from all continents, working in the field of adolescent medicine, neurosciences, developmental and clinical psychology, sociology, ethics, and law. Formal presentations and discussions were based on a literature search and the participants' experience. The assessment of adolescent decision-making capacity includes the following: (1) a review of the legal context consistent with the principles of the Convention on the Rights of the Child; (2) an empathetic relationship between the adolescent and the health care professional/team; (3) the respect of the adolescent's developmental stage and capacities; (4) the inclusion, if relevant, of relatives, peers, teachers, or social and mental health providers with the adolescent's consent; (5) the control of coercion and other social forces that influence decision-making; and (6) a deliberative stepwise appraisal of the adolescent's decision-making process. This stepwise approach, already used among adults with psychiatric disorders, includes understanding the different facets of the given situation, reasoning on the involved issues, appreciating the outcomes linked with the decision(s), and expressing a choice. Contextual and psychosocial factors play pivotal roles in the assessment of adolescents' decision-making capacity. The evaluation must be guided by a well-established procedure, and health professionals should be trained accordingly. These proposals are the first to have been developed by a multicultural, multidisciplinary expert panel.

[Biomonitoring information management and communication: an ethical and interdisciplinary perspective]. / Gestion et communication de l'information en surveillance biologique. Une approche éthique et interdisciplinaire.

This study explores biomonitoring communication with workers exposed to risks. Using a qualitative approach, semi-directive interviews were performed. Results show that occupational physicians and workers share some perceptions, but also point out communication gaps. Consequently, informed consent is not guaranteed. This article proposes some recommendations for occupational physicians' practices.

[Ethical and social issues associated with genomic medicine]. / Enjeux éthiques et sociaux de la médecine génomique.

Genomic medicine is often presented as a new paradigm for personalized healthcare. Encompassing both a translational approach in research and a vision of future medical practice, genomic medicine may have important impact on the way healthcare professionals diagnostics, treat and prevent diseases. We discuss some ethical and social issues raised by the prospect of genome-based medical practice, namely: changing definitions of disease and identity, assessment of clinical validity and utility of genome screening, mastery of genomic information by healthcare professionals and its communication to patients, and questions related to the costs of genomic medicine for future healthcare.

La médecine génomique est souvent présentée comme un nouveau paradigme permettant une prise en charge personnalisée du patient. Englobant à la fois une démarche de recherche et une vision de la médecine du futur, elle pourrait avoir des conséquences importantes sur la manière de diagnostiquer, traiter et prévenir la maladie. Cet article présente quelques grands enjeux éthiques et sociaux soulevés par le développement de la médecine génomique: les implications sur nos conceptions de la maladie et de l'identité, la question de la validité et de l'utilité clinique des analyses du génome, les enjeux liés à la maîtrise de l'information génétique par les soignants et à sa communication aux patients, et la question des coûts pour le système de santé.

[Can we accept medical progress without progress in ethics?]. / Peut-on accepter les progrès en sciences biomèdicales sans progrès en éthique ?

Since the mid 20th century progress in biomedical science has been punctuated by the emergence of bioethics which has fashioned the moral framework of its application to both research and clinical practice. Can we, however, consider the advent of bioethics as a form of progress marking the advances made in biomedical science with an adequate ethical stamp? The argument put forward in this chapter is based on the observation that, far from being a mark of progess, the development of bioethics runs the risk of favouring, like modern science, a dissolution of the links that unite ethics and medicine, and so of depriving the latter of the humanist dimensions that underlie the responsibilities that fall to it. Faced with this possible pitfall, this contribution proposes to envisage as a figure of moral progress, consubstantial with the development of biomedical science, an ethical approach conceived as a means of social intervention which takes the first steps towards an ethics of responsibility integrating the bioethical perspective within a hermeneutic and deliberative approach. By the yardstick of a prudential approach, it would pay particular attention to the diverse sources of normativity in medical acts. It is suggested that this ethical approach is a source of progress insofar as it constitutes an indispensable attitude of watchfulness, which biomedical science can lean on as it advances, with a view to ensuring that the fundamental link uniting ethics and medicine is maintained.

Evaluation of clinical ethics support services and its normativity.

Evaluation of clinical ethics support services (CESS) has attracted considerable interest in recent decades. However, few evaluation studies are explicit about normative presuppositions which underlie the goals and the research design of CESS evaluation. In this paper, we provide an account of normative premises of different approaches to CESS evaluation and argue that normativity should be a focus of considerations when designing and conducting evaluation research of CESS. In a first step, we present three different approaches to CESS evaluation from published literature. Next to a brief sketch of the well-established approaches of 'descriptive evaluation' and 'evaluation of outcomes', we will give a more detailed description of a third approach to evaluation-'reconstructing quality norms of CESS'-which is explicit about the normative presuppositions of its research (design). In the subsequent section, we will analyse the normative premises of each of the three approaches to CESS evaluation. We will conclude with a brief argument for more sensitivity towards the normativity of CESS and its evaluation research.

[An interdisciplinary approach of the organ donation decision: the Lausanne's experience]. / Approche interdisciplinaire de la decision de don d'organes: l'experience lausannoise.

Since 2007, the Interdisciplinary Ethics Platform (Ethos) of the University of Lausanne is leading an interdisciplinary reflection on the organ donation decision. On this basis, the project "Organ transplantation between the rhetoric of the gift and a biomedical view of the body" studies the logics at stake in the organ donation decision-making process. Results highlight many tensions within practices and public discourses in the field of organ donation and transplantation and suggest lines of inquiry for future adjustments.

Financial incentives to improve organ donation: what is the opinion of the Vaud French-speaking population?

BACKGROUND: With the increase of the organ shortage, several authors assume that financial incentives would improve organ donation rates and fill the unbalance between the demand and the organs available for transplant medicine. This line of argument has been criticised with people arguing that an exchange of money for organs would violate the legal and the ethical principle of gratuity, decrease voluntarism and increase the body parts commodification phenomena. PURPOSE: Switzerland is often highlighted as having under-average organ donation rates compared to other European countries. In this paper we investigate the opinions of the Vaud French-speaking population concerning direct, indirect and non financial incentives in order to assess their opinions and anticipate the further debate. METHODS: As part of a broad survey about the organ donation decision-making process, questions about incentives for both living and deceased organ donation were addressed to Vaud inhabitants and physicians. RESULTS: The data collected showed that respondents were opposed to rewarding both living and deceased organ donation. The analysis of positive answers showed that indirect and non financial incentives were the most likely choice to acknowledge the donor's act. People in critical financial situations preferred direct financial incentives. CONCLUSIONS: These results showed that altruism and gratuity were key-values in the organ donation and transplantation social perceptions of the respondents. Thus, we assume that introducing financial incentives could tarnish the image of transplant medicine. Nevertheless, further studies are needed to evaluate if their introduction would improve the organ donation rates or decrease voluntarism.

Ethical issues in nutrition support of severely disabled elderly persons: a guide for health professionals.

Providing or withholding nutrition in severely disabled elderly persons is a challenging dilemma for families, health professionals, and institutions. Despite limited evidence that nutrition support improves functional status in vulnerable older persons, especially those suffering from dementia, the issue of nutrition support in this population is strongly debated. Nutrition might be considered a basic need that not only sustains life but provides comfort as well by patients and their families. Consequently, the decision to provide or withhold nutrition support during medical care is often complex and involves clinical, legal, and ethical considerations. This article proposes a guide for health professionals to appraise ethical issues related to nutrition support in severely disabled older persons. This guide is based on an 8-step process to identify the components of a situation, analyze conflicting values that result in the ethical dilemma, and eventually reach a consensus for the most relevant plan of care to implement in a specific clinical situation. A vignette is presented to illustrate the use of this guide when analyzing a clinical situation.

Ethics and adolescent care: an international perspective.

PURPOSE OF REVIEW: This update reviews the concepts underlying ethical issues in various contexts and countries, highlighting the evolution in the use of the core values underpinning the field and practice of bioethics as applied to healthcare. RECENT FINDINGS: It stresses the specific position of the adolescent as being a unique individual searching for autonomy and, most of the time, being competent to make decisions regarding the adolescent's own health. It briefly outlines the principles of a 'deliberative' approach in which the practitioner, while keeping in mind the legal context of the country where the practitioner is working, assesses to what extent the adolescent can be considered as competent, and then discusses with the adolescent the medical and psychosocial aspects of the various actions to be taken in a situation, as well as the basic ethical values linked with each of the various options available. The deliberation can involve relevant stakeholders, provided the issues concerning confidentiality have been fully discussed with the adolescent. SUMMARY: This process forces the practitioner, the adolescent patient and those who care for the adolescent patient to look outside their usual frameworks and make a decision that is in the best interest of the young person, and is informed by various ethical values.

Addressing ethical dilemmas in the clinical care of adolescents: an international view.

This chapter reviews some basic concepts underlying ethical issues in adolescence and provides a step-by-step procedure to address ethical dilemmas involving minor adolescents, based on a deliberative approach. "Deliberation" with the patient, along with involving the opinion of relevant stakeholders if possible, allows for a careful, multidisciplinary examination of all options, the medical and psychosocial consequences, and the moral values stressed by each option. Although the final decision regarding which ethical option should be chosen usually belongs to the health care providers and his or her patient, the deliberative approach provides the ingredients for sound, unbiased decision-making.

[Transplantation with living organ donors: ethical issues]. / Transplantation avec donneurs vivants: enjeux éthiques.

Living organ donation has raised ethical issues, which have not been fully addressed. The scarcity of organs as well as medical advances promote this procedure. However, the psychological outcome of donors may not be as good as expected. The usual assessment is not able to identify donors who are at risk. Patients' autonomy is privileged but may lead to the underestimation of underlying psychopathological processes. Without minimizing the importance of donors' self-determination, benevolence and sense of justice, we suggest that it could be useful to investigate the roots of donors' motivations. We could consider the existence of a shared responsibility between patients and clinicians. The ethics of responsibility may complete the ethics of autonomy, leading to a better identification of donors at risk.

Competence in mental health care: a hermeneutic perspective.

In this paper we develop a hermeneutic approach to the concept of competence. Patient competence, according to a hermeneutic approach, is not primarily a matter of being able to reason, but of being able to interpret the world and respond to it. Capacity should then not be seen as theoretical, but as practical. From the perspective of practical rationality, competence and capacity are two sides of the same coin. If a person has the capacity to understand the world and give meaning to the situation, he or she is able to make decisions, and is thus competent. People can fail in the area of practical rationality. They can feel ill at ease, uncomfortable or not at home in the situation. Under such conditions, they appear as incompetent, and urge caregivers to respond in such a way that their competence can be raised. The issue is not how to measure their incompetence, but how to help them to become more competent, that is to get a practical grip on their situation and to be able to live out their lives in such a way that they develop their identity in relations with others. From a hermeneutic point of view, assessing a patient's capacity implies focusing on the patient's way of meaning making and regarding her behavior from the perspective of practical rationality. The focus should not be on the assessment as a matter of fact, but on improving capacity. This requires allowing the patient to experience the world meaningfully and affording her, in the context of a supportive and trustful institutional environment, the possibility of developing a personal narrative where her choices are expressed verbally or non-verbally.