Where Caring Is Sharing: Evolving Ethical Considerations in Tuberculosis Prevention Among Healthcare Workers.

In many settings, the dedication of healthcare workers (HCWs) to the treatment of tuberculosis exposes them to serious risks. Current ethical considerations related to tuberculosis prevention in HCWs involve the threat posed by comorbidities, issues of power and space, the implications of intersectoral collaborations, (de)professionalization, just remuneration, the duty to care, and involvement in research. Emerging ethical considerations include mandatory vaccination and the use of geolocalization services and information technologies. The following exploration of these various ethical considerations demonstrates that the language of ethics can fruitfully be deployed to shed new light on policies that have repercussions on the lives of HCWs in underresourced settings. The language of ethics can help responsible parties get a clearer sense of what they owe HCWs, particularly when these individuals are poorly compensated, and it shows that it is essential that HCWs' contribution be acknowledged through a shared commitment to alleviate ethically problematic aspects of the environments within which they provide care. For this reason, there is a strong case for the community of bioethicists to continue to take greater interest both in the micro-level (eg, patient-provider interactions) and macro-level (eg, injustices that occur as a result of the world order) issues that put HCWs working in areas with high tuberculosis prevalence in ethically untenable positions. Ultimately, appropriate responses to the various ethical considerations explored here must vary based on the setting, but, as this article shows, they require thoughtful reflection and courageous action on the part of governments, policy makers, and managers responsible for national responses to the tuberculosis epidemic.

Haitian and international responders' and decision-makers' perspectives regarding disability and the response to the 2010 Haiti earthquake.

BACKGROUND: Following disasters, persons with disabilities (PWD) are especially vulnerable to harm, yet they have commonly been excluded from disaster planning, and their needs have been poorly addressed during disaster relief. Following the 2010 Haiti earthquake, thousands of individuals experienced acute injuries. Many more individuals with preexisting disabilities experienced heightened vulnerability related to considerations including safety, access to services, and meeting basic needs. OBJECTIVE: The objective of this research was to better understand the perceptions of responders and decision-makers regarding disability and efforts to address the needs of PWD following the 2010 earthquake. DESIGN: We conducted a qualitative study using interpretive description methodology and semistructured interviews with 14 Haitian and 10 international participants who were involved in the earthquake response. RESULTS: Participants identified PWD as being among the most vulnerable individuals following the earthquake. Though some forms of disability received considerable attention in aid efforts, the needs of other PWD did not. Several factors were identified as challenges for efforts to address the needs of PWD including lack of coordination and information sharing, the involvement of multiple aid sectors, perceptions that this should be the responsibility of specialized organizations, and the need to prioritize limited resources. Participants also reported shifts in local social views related to disability following the earthquake. CONCLUSIONS: Addressing the needs of PWD following a disaster is a crucial population health challenge and raises questions related to equity and responsibility for non-governmental organizations, governments, and local communities.

The Development of a Humanitarian Health Ethics Analysis Tool.

UNLABELLED: Introduction Health care workers (HCWs) who participate in humanitarian aid work experience a range of ethical challenges in providing care and assistance to communities affected by war, disaster, or extreme poverty. Although there is increasing discussion of ethics in humanitarian health care practice and policy, there are very few resources available for humanitarian workers seeking ethical guidance in the field. To address this knowledge gap, a Humanitarian Health Ethics Analysis Tool (HHEAT) was developed and tested as an action-oriented resource to support humanitarian workers in ethical decision making. While ethical analysis tools increasingly have become prevalent in a variety of practice contexts over the past two decades, very few of these tools have undergone a process of empirical validation to assess their usefulness for practitioners. METHODS: A qualitative study consisting of a series of six case-analysis sessions with 16 humanitarian HCWs was conducted to evaluate and refine the HHEAT. RESULTS: Participant feedback inspired the creation of a simplified and shortened version of the tool and prompted the development of an accompanying handbook. CONCLUSION: The study generated preliminary insight into the ethical deliberation processes of humanitarian health workers and highlighted different types of ethics support that humanitarian workers might find helpful in supporting the decision-making process.

An in-depth analysis of ethics teaching in Canadian physiotherapy and occupational therapy programs.

PURPOSE: The purpose of this study was to examine current approaches and challenges to teaching ethics in entry-level Canadian physiotherapy (PT) and occupational therapy (OT) programs. METHODS: Educators responsible for teaching ethics in the 28 Canadian PT and OT programs (n = 55) completed an online survey. RESULTS: The quantity of ethics teaching is highly variable, ranging from 5 to 65 h. Diverse obstacles to ethics teaching were reported, relating to the organization and structure of academic programs, student issues and the topic of ethics itself. Specific challenges included time constraints, large class sizes, a lack of pedagogical tools adapted to teaching this complex subject, a perceived lack of student interest for the subject and a preference for topics related to clinical skills. Of note, 65% of ethics educators who participated in the survey did not have any specialized training in ethics. CONCLUSION: Significant cross-program variation in the number of hours dedicated to ethics and the diversity of pedagogical methods used suggests that there is little consensus about how best to teach ethics. Further research on ethics pedagogy in PT and OT programs (i.e. teaching and evaluation approaches and effectiveness of current ethics teaching) would support the implementation of more evidence-based ethics education. Implications for Rehabilitation Ethics educators in Canadian PT and OT programs are experimenting with diverse educational approaches to teach ethical reasoning and decision-making to students, including lectures, problem-based learning, directed readings, videos, conceptual maps and clinical elective debriefing, but no particular method has been shown to be more effective for developing ethical decision-making/reasoning. Thus, research on the effectiveness of current methods is needed to support ethics educators and programs to implement evidence-based ethics education training. In our survey, 65% of ethics educators did not have any specialized training in ethics. Ensuring that educators are well equipped to support the development of necessary theoretical and applied competencies can be promoted by initiatives including the creation of tailored ethics teaching and evaluation tools, and by establishing communities of practice among ethics educators. This survey identified heterogeneity in ethics teaching content, format and duration, and location within the curriculum. In order to be able to assess more precisely the place accorded to ethics teaching in PT and OT programs, careful mapping of ethics content inside and across rehabilitation programs is needed - both in Canada and internationally. These initiatives would help advance understanding of ethics teaching practices in rehabilitation.

An investigation of how university sports team athletic therapists and physical therapists experience ethical issues.

STUDY DESIGN: Qualitative study using interpretive description methodology. OBJECTIVES: The purpose of this study was to better understand how ethical issues are experienced by university sports team athletic therapists and physical therapists. BACKGROUND: In clinical practice, sports teams are associated with a range of ethical issues. Issues commonly reported in the literature include confidentiality, return-to-play decisions, conflicts of interest, advertising, doping, and use of local anesthetic. To date, there has been limited examination of how athletic therapists and physical therapists involved with sports teams experience these ethical issues, and limited exploration of how these ethical issues, when encountered, are shaped by therapists' professional roles and responsibilities. METHODS: Semi-structured interviews were conducted with 11 athletic or physical therapists working with sports teams in 5 Canadian provinces. The data were analyzed inductively, using a recursive approach and constant comparative techniques. RESULTS: Four key themes were developed relating to the participants' experiences of ethical issues: establishing and maintaining professional boundaries, striving for respectful and effective collaboration, seeking answers to ethical concerns, and living with the repercussions of challenging decisions. CONCLUSION: While many ethical issues reported by participants resemble those faced by sports medicine physicians, they are experienced in distinctive ways, due to differences in professional roles and identities. Issues concerning professional boundaries were also more prominent for the study participants than the literature has reported them to be for sports medicine physicians. Effective communication and enhanced collaboration appear to be key elements in managing these ethical challenges.

Ethical considerations related to participation and partnership: an investigation of stakeholders' perceptions of an action-research project on user fee removal for the poorest in Burkina Faso.

BACKGROUND: Healthcare user fees present an important barrier for accessing services for the poorest (indigents) in Burkina Faso and selective removal of fees has been incorporated in national healthcare planning. However, establishing fair, effective and sustainable mechanisms for the removal of user fees presents important challenges. A participatory action-research project was conducted in Ouargaye, Burkina Faso, to test mechanisms for identifying those who are indigents, and funding and implementing user fee removal. In this paper, we explore stakeholder perceptions of ethical considerations relating to participation and partnership arising in the action-research. METHODS: We conducted 39 in-depth interviews to examine ethical issues associated with the action-research. Respondents included 14 individuals identified as indigent through the community selection process, seven members of village selection committees, six local healthcare professionals, five members of the management committees of local health clinics, five members of the research team, and four regional or national policy-makers. Using constant comparative techniques, we carried out an inductive thematic analysis of the collected data. RESULTS: The Ouargaye project involved a participatory model, included both implementation and research components, and focused on a vulnerable group within small, rural communities. Stakeholder perceptions and experiences relating to the participatory approach and reliance on multiple partnerships in the project were associated with a range of ethical considerations related to 1) seeking common ground through communication and collaboration, 2) community participation and risk of stigmatization, 3) impacts of local funding of the user fee removal, 4) efforts to promote fairness in the selection of the indigents, and 5) power relations and the development of partnerships. CONCLUSIONS: This investigation of the Ouargaye project serves to illuminate the distinctive ethical terrain of a participatory public health action-research project. In carrying out such projects, careful attention and effort is needed to establish and maintain respectful relationships amongst those involved, acknowledge and address differences of power and position, and evaluate burdens and risks for individuals and groups.

The ethics of engaged presence: a framework for health professionals in humanitarian assistance and development work.

In this article, we present an ethics framework for health practice in humanitarian and development work: the ethics of engaged presence. The ethics of engaged presence framework aims to articulate in a systematic fashion approaches and orientations that support the engagement of expatriate health care professionals in ways that align with diverse obligations and responsibilities, and promote respectful and effective action and relationships. Drawn from a range of sources, the framework provides a vocabulary and narrative structure for examining the moral dimensions of providing development or humanitarian health assistance to individuals and communities, and working with and alongside local and international actors. The elements also help minimize or avoid certain miscalculations and harms. Emphasis is placed on the shared humanity of those who provide and those who receive assistance, acknowledgement of limits and risks related to the contributions of expatriate health care professionals, and the importance of providing skillful and relevant assistance. These elements articulate a moral posture for expatriate health care professionals that contributes to orienting the practice of clinicians in ways that reflect respect, humility, and solidarity. Health care professionals whose understanding and actions are consistent with the ethics of engaged presence will be oriented toward introspection and reflective practice and toward developing, sustaining and promoting collaborative partnerships.

"How far do you go and where are the issues surrounding that?" Dilemmas at the boundaries of clinical competency in humanitarian health work.

Health professionals working in humanitarian relief projects encounter a range of ethical challenges. Applying professional and ethical norms may be especially challenging in crisis settings where needs are elevated, resources scarce, and socio-political structures strained. Situations when clinicians must decide whether to provide care that is near the margins of their professional competency are a source of moral uncertainty that can give rise to moral distress. The authors suggest that responding ethically to these dilemmas requires more than familiarity with ethical codes of conduct and guidelines; it requires practical wisdom, that is, the ability to relate past experience and general guidance to a current situation in order to render a morally sound action. Two sets of questions are proposed to guide reflection and deliberation for clinicians who face competency dilemmas. The first is prospective and intended to aid clinicians in evaluating an unfolding situation. The second is retrospective and designed to support debriefing about past experiences and difficult situations. The aim of this analysis is to support clinicians in evaluating competency dilemmas and provide ethical care and services.

A patient-centered care ethics analysis model for rehabilitation.

There exists a paucity of ethics resources tailored to rehabilitation. To help fill this ethics resource gap, the authors developed an ethics analysis model specifically for use in rehabilitation care. The Patient-Centered Care Ethics Analysis Model for Rehabilitation is a process model to guide careful moral reasoning for particularly complex or challenging matters in rehabilitation. The Patient-Centered Care Ethics Analysis Model for Rehabilitation was developed over several iterations, with feedback at different stages from rehabilitation professionals and bioethics experts. Development of the model was explicitly informed by the theoretical grounding of patient-centered care and the context of rehabilitation, including the International Classification of Functioning, Disability and Health. Being patient centered, the model encourages (1) shared control of consultations, decisions about interventions, and management of the health problems with the patient and (2) understanding the patient as a whole person who has individual preferences situated within social contexts. Although the major process headings of the Patient-Centered Care Ethics Analysis Model for Rehabilitation resemble typical ethical decision-making and problem-solving models, the probes under those headings direct attention to considerations relevant to rehabilitation care. The Patient-Centered Care Ethics Analysis Model for Rehabilitation is a suitable tool for rehabilitation professionals to use (in real time, for retrospective review, and for training purposes) to help arrive at ethical outcomes.

Beyond procedural ethics: foregrounding questions of justice in global health research ethics training for students.

Interest in global health is growing among students across many disciplines and fields of study. In response, an increasing number of academic programmes integrate and promote opportunities for international research, service or clinical placements. These activities raise a range of ethical issues and are associated with important training needs for those who participate. In this paper, we focus on research fieldwork conducted in lower income nations by students from more affluent countries and the ethics preparation they would benefit from receiving prior to embarking on these projects. Global health research is closely associated with questions of justice and equity that extend beyond concerns of procedural ethics. Research takes place in and is shaped by matrices of political, social and cultural contexts and concerns. These realities warrant analysis and discussion during research ethics training. Training activities present an opportunity to encourage students to link global health research to questions of global justice, account for issues of justice in planning their own research, and prepare for 'ethics-in-practice' issues when conducting research in contexts of widespread inequality. Sustained engagement with questions of justice and equity during research ethics training will help support students for involvement in global health research.

Ethical implications of diversity in disaster research.

Enhancing the effectiveness, efficiency, and fairness of interventions is an increasing source of concern in the field of disaster response. As a result, the expansion of the disaster relief evidence base has been identified as a pressing need. There has been a corresponding increase in discussions of ethical standards and procedures for disaster research. In general, these discussions have focused on elucidating how traditional research ethics concerns can be operationalized in disaster settings. Less attention has been given to the exploration of the ethical implications of heterogeneity within the field of disaster research. Hence, while current efforts to discuss the ethics of disaster research in low-resource settings are very encouraging, it is clear that further initiatives will be crucial to promote the ethical conduct of disaster research. In this article, we explore how the ethical review of disaster research conducted in low-resource settings should account for this diversity. More specifically, we consider how the nature of the project (what?), sociopolitical and physical environment of research sites (where?), temporal proximity to the disaster event (when?), objectives motivating the research (why?), and identity of the stakeholders involved in the research process (who?) all relate to the ethics of disaster research.

Promoting shared decision-making in rehabilitation: development of a framework for situations when patients with Dysphagia refuse diet modification recommended by the treating team.

To address the risks of aspiration pneumonia, patients with dysphagia may be prescribed a modified diet. The goal of diet modification is to decrease the risk of patients aspirating food due to their diminished swallowing reflex. Some patients may not accept diet modification or may not adhere to the treatments identified by the interdisciplinary team. Such scenarios may result in important moral uncertainty and concern for clinicians. As a result of several ethics consultations related to this issue, a working group of the Clinical Ethics Committee at the Jewish Rehabilitation Hospital in Laval, Quebec, Canada, developed a framework for responding to situations when patients do not adhere to recommended diet modification. The goal of this tool is to facilitate discussion and collaboration between clinicians and patients, to clarify assumed versus real risk, and to promote shared decision-making in dysphagia care. In this article we examine the clinical context of diet modification for patients with dysphagia in rehabilitation hospitals, explore ethical aspects of this topic, present the clinical algorithm, and discuss our experience with developing and piloting this tool.

Tragic choices in humanitarian health work.

Humanitarian healthcare work presents a range of ethical challenges for expatriate healthcare professionals, including tragic choices requiring the selection of a least-worst option. In this paper we examine a particular set of tragic choices related to the prioritization of care and allocation of scarce resources between individuals in situations of widespread and urgent health needs. Drawing on qualitative interviews with clinicians, we examine the nature of these choices. We offer recommendations to clinical teams and aid organizations for preparing and supporting frontline clinicians in their efforts to determine the least-worst option, and in their responsibility for making such choices.

Moral experience: a framework for bioethics research.

Theoretical and empirical research in bioethics frequently focuses on ethical dilemmas or problems. This paper draws on anthropological and phenomenological sources to develop an alternative framework for bioethical enquiry that allows examination of a broader range of how the moral is experienced in the everyday lives of individuals and groups. Our account of moral experience is subjective and hermeneutic. We define moral experience as "Encompassing a person's sense that values that he or she deem important are being realised or thwarted in everyday life. This includes a person's interpretations of a lived encounter, or a set of lived encounters, that fall on spectrums of right-wrong, good-bad or just-unjust". In our conceptualisation, moral experience is not limited to situations that are heavily freighted with ethically-troubling ramifications or are sources of debate and disagreement. Important aspects of moral experience are played out in mundane and everyday settings. Moral experience provides a research framework, the scope of which extends beyond the evaluation of ethical dilemmas, processes of moral justification and decision-making, and moral distress. This broad research focus is consistent with views expressed by commentators within and beyond bioethics who have called for deeper and more sustained attention in bioethics scholarship to a wider set of concerns, experiences and issues that better captures what is ethically at stake for individuals and communities. In this paper we present our conceptualisation of moral experience, articulate its epistemological and ontological foundations and discuss opportunities for empirical bioethics research using this framework.

Establishing moral bearings: ethics and expatriate health care professionals in humanitarian work.

Expatriate health care professionals frequently participate in international responses to natural disasters and humanitarian emergencies. This field of practice presents important clinical, logistical and ethical challenges for clinicians. This paper considers the ethics of health care practice in humanitarian contexts. It examines features that contribute to forming the moral landscape of humanitarian work, and discusses normative guidelines and approaches that are relevant for this work. These tools and frameworks provide important ethics resources for humanitarian settings. Finally, it elaborates a set of questions that can aid health care professionals as they analyse ethical issues that they experience in the field. The proposed process can assist clinicians as they seek to establish their moral bearings in situations of ethical complexity and uncertainty. Identifying and developing ethics resources and vocabulary for clinical practice in humanitarian work will help health care professionals provide ethically sound care to patients and communities.

Partners towards autonomy: risky choices and relational autonomy in rehabilitation care.

PURPOSE: A common source of ethical challenge for health care professionals (HCPs) in rehabilitation is situations when patients wish to make risky choices not related or contrary to rehabilitation goals. We explore the potential contribution of a relational understanding of autonomy for orienting clinical practice when patients wish to enact choices with associated risks for the patient or others. METHOD: We provide a theoretical analysis that is oriented by an examination of risk and a relational conception of autonomy, as relevant to rehabilitation care. We illustrate our analysis through the examination of a clinical case. RESULTS: Relational autonomy assumes that the patient, and the patient's decisional autonomy, is situated and shaped by relationships. From this perspective, HCPs can engage in a process of communication and deliberation with the patient about the risky choices at issue, leading towards improved patient autonomy. CONCLUSIONS: Relational autonomy can contribute to understanding patients' risky choices and guiding HCPs as they partner with patients towards autonomy. Such an approach supports patient-centred rehabilitation care. Ultimately, as clinicians respond to a patient who wishes to enact a risky choice, they should aim for a partnership towards autonomy with the patient and family.

Resources and constraints for addressing ethical issues in medical humanitarian work: experiences of expatriate healthcare professionals.

OBJECTIVE: International nongovernmental organizations frequently provide emergency assistance in settings where armed conflict or natural disaster overwhelm the capacity of local and national agencies to respond to health and related needs of affected communities. Healthcare practice in humanitarian settings presents distinct clinical, logistical, and ethical challenges for clinicians and differs in important ways from clinical practice in the home countries of expatriate healthcare professionals. The aim of this research was to examine the moral experience of healthcare professionals who participate in humanitarian relief work. DESIGN: I conducted a qualitative research study using interpretive description methodology. PARTICIPANTS: Fifteen Canadian healthcare professionals and three human resource or field coordination officers for nongovernmental organizations were interviewed. RESULTS: In this article, I present findings related to expatriate healthcare professionals' experiences of resources and constraints for addressing ethical issues in humanitarian crises. Resources for ethics deliberation and reflection include the following: opportunities for discussion; accessing and understanding local perspectives; access to outside perspectives; attitudes, such as humility, open-mindedness, and reflexivity; and development of good moral "reflexes." Constraints for deliberation and reflection relate to three domains: individual considerations, contextual features of humanitarian relief work, and local team and project factors. CONCLUSION: These findings illuminate the complex nature of ethical reflection, deliberation, and decision-making in humanitarian healthcare practice. Healthcare professionals and relief organizations should seek to build upon resources for addressing ethical issues. When possible, they should minimize the impact of features that function as constraints.

Patient-centered care and cultural practices: process and criteria for evaluating adaptations of norms and standards in health care institutions.

It is widely recognized that health care providers and health care organizations need to take into account the cultural frameworks of patients.Such an orientation is consistent with patient-centered care that focuses on the particularity of individual patients (Stewart, 2001). In a patient-centered approach clinicians individualize the care they provide to each patient, and seek to develop and promote partnerships with patients. Eliciting and engaging a patient's cultural values and perspectives is a key component of patient-centered care. An important body of scholarship has developed around the question of how attending to the needs of culturally diverse patient populations should affect the provision of clinical care and other health services (Betan court, 2004). This discussion has led to many practical changes in how health care providers are trained. Today, educational programs in faculties of medicine, schools of nursing and schools of allied health incorporate cultural competence training in their curricula.Despite the increased focus in education and clinical practice on providing patient-centered and culturally sensitive care, challenging situations can arise when patients wish to perform practices that do not fit within institutional or clinical norms. In many such situations, health care providers and hospital administrators adapt institutional or clinical norms and structures. In other cases it may be difficult to decide whether particular adaptations should be made or not. Such scenarios may be sources of important concern and stress for patients, families and health care providers. The assessment of a given situation is rendered more complex when the adaptation being considered has the potential to infringe on the rights of others (such as other patients,visitors to the hospital, or health care providers). In this paper, I propose a328 HEC Forum (2009) 21(4): 327- 339 process, including four evaluative criteria, for assessing such scenarios. This discussion is also relevant for considering practices that require adaptation of institutional or clinical norms, but which are not based in a specific cultural or religious framework. Given a commitment to respect autonomy,administrators and clinicians should also carefully consider requests for adaptation which patients associate with their own core beliefs and deeply held commitments.

Strengths and challenges in the use of interpretive description: reflections arising from a study of the moral experience of health professionals in humanitarian work.

Interpretive description is a qualitative research methodology aligned with a constructivist and naturalistic orientation to inquiry. The aim of interpretive description, a relatively new qualitative methodology, is to generate knowledge relevant for the clinical context of applied health disciplines. To date there has been little discussion in the literature of the particular merits and limitations of this methodological framework. In this article I draw on my experience of using interpretive description as methodology for an inquiry into the moral experience of clinicians in humanitarian work. I identify and discuss strengths and challenges that can arise in the application of interpretive description. Strengths identified include a coherent logic and structure, an orientation toward the generation of practice-relevant findings, and attention to disciplinary biases and commitments. Challenges include limited resources for situating the methodology, challenges in employing a lesser-known methodology, and uncertainty regarding the degree of interpretation to seek.

Moral experience of Canadian healthcare professionals in humanitarian work.

INTRODUCTION: Expatriate healthcare professionals frequently participate in international relief operations that are initiated in response to disasters due to natural hazards or humanitarian emergencies in low resource settings. This practice environment is significantly different from the healthcare delivery environment in the home countries of expatriate healthcare professionals. Human rights, public health, medicine, and ethics intersect in distinct ways as healthcare professionals provide care and services in communities affected by crisis. PURPOSE: The purpose of this study was to explore the moral experience of Canadian healthcare professionals during humanitarian relief work. METHODS: This is a qualitative study with 18 semi-structured individual interviews based on Interpretive Description methodology. There are two groups of participants: (1) 15 healthcare professionals (nine doctors, five nurses, and one midwife) with more than three months experience in humanitarian work; and (2) three individuals who have experience as human resource or field coordination officers for humanitarian, non-governmental organizations. Participants were recruited by contacting non-governmental organizations, advertisement at the global health interest group of a national medical society, word of mouth, and a snowball sampling approach in which participants identified healthcare professionals with experience practicing in humanitarian settings who might be interested in the research. RESULTS: Five central themes were identified during the analysis: (1) examination of motivations and expectations; (2) the relational nature of humanitarian work; (3) attending to steep power imbalances; (4) acknowledging and confronting the limits of what is possible in a particular setting; and (5) recognition of how organizational forms and structures shape everyday moral experience. DISCUSSION: Humanitarian relief work is a morally complex activity. Healthcare professionals who participate in humanitarian relief activities, or who are contemplating embarking on a humanitarian project, will benefit from carefully considering the moral dimensions of this work. Humanitarian organizations should address the moral experiences of healthcare professionals in staff recruitment, as they implement training prior to departure, and in supporting healthcare professionals in the field.