Background Shared decision-making in healthcare is a collaborative process where patients are supported to make informed decisions according to their preferences. Healthcare decisions affect patients' lives which necessitates patients to participate in decisions concerning their health. This study explored experiences and ethical issues related to shared decision-making in a rural healthcare setting. Methods An exploratory qualitative study was conducted at Budumba Health Centre III and Butaleja Health Centre III in rural Eastern Uganda. In this (...) study, 23 in-depth interviews were conducted among 12 healthcare providers and 11 patients. Data was analyzed thematically using NVivo-12 plus software. Results Four themes emerged which included: Paternalistic cultures of care, challenges, strategies for improvement, and ethical issues. Patients at both facilities expressed the need to be involved in decision-making processes. However, many stressed that they are not engaged in decision-making about their health. Many healthcare providers noted that shared decision-making could improve patient prognosis but are faced with challenges related to low male involvement and the influence of cultural and religious practices, including myths and patriarchal attitudes which impact effective patient engagement. Ethical issues identified include concerns about informed consent, privacy and confidentiality, deception, and harm. Conclusions This study highlighted the need for better sensitization of patients and comprehensive training for healthcare providers to minimize and resolve ethical issues that emerge during shared decision-making processes. Therefore, targeted interventions are needed to enhance decision-making processes in rural healthcare including but not limited to developing shared decision-making manual and continuous training of healthcare providers to ethically engage patients. Further research is needed to explore larger facilities with a bigger scope including patients under 18 years of age and and their surrogates. (shrink)

The aim of the paper is to reconsider Habermas’ discourse approach in terms of its usefulness in the realm of public healthcare where, on a microscale, intersubjective communicative situations arise between defined participants, i.e., patients and healthcare providers, patients’ family members, and further eligible contributors to patient-related decision making. A need for more “communicative interaction,” and explicative and practical discourse, is illustrated by two empirical examples of medical decision making which reveal both communicative and (...) discursive deficits. To empower and enable the patient as a rational and autonomous speaker and discourse participant, a Habermasian emancipatory argument and ‘the power of the better argument’ is recalled. The possibility of equal communicative and discursive rights in the light of real inequalities is discussed in the context of a ‘competence gap’ between participants. Further sections focus on the importance of informed consent on the side of the patient and the communicative competences as an important factor of healthcare system. (shrink)

Background: Many nursing homes appear as multicultural workplaces where the majority of healthcare providers have an ethnic minority background. This environment creates challenges linked to communication, interaction and cultural differences. Furthermore, the healthcare providers have varied experiences and understanding of what quality care of patients with dementia involves. Purpose: The aim of this study is to illuminate multi-ethnic healthcare providers’ lived experiences of their own working relationship, and its importance to quality care for (...) people with dementia. Research design: The study is part of a greater participatory action research project: ‘Hospice values in the care for persons with dementia’. The data material consists of extensive notes from seminars, project meetings and dialogue-based teaching. The text material was subjected to phenomenological-hermeneutical interpretation. Participants and research context: Participants in the project were healthcare providers working in a nursing home unit. The participants came from 15 different countries, had different formal qualifications, varied backgrounds and ethnic origins. Ethical considerations: The study is approved by the Norwegian Regional Ethics Committee and the Norwegian Social Science Data Services. Findings: The results show that good working relationships, characterized by understanding each other’s vulnerability and willingness to learn from each other through shared experiences, are prerequisites for quality care. The healthcare providers further described ethical challenges as uncertainty and different understandings. Discussion: The results are discussed in the light of Lögstrup’s relational philosophy of ethics and the concepts of vulnerability, ethic responsibility, trust and openness of speech. Conclusion: The prerequisite for quality care for persons with dementia in a multicultural working environment is to create arenas for open discussions between the healthcare providers. Leadership is of great importance. (shrink)

Background: The nursing community in the Nordic countries has become multicultural because of migration from European, Asian and African countries. In Norway, minority health care providers are recruited in to nursing homes which have become multicultural workplaces. They overcome challenges such as language and strangeness but as a group they are vulnerable and exposed to many challenges. Purpose: The aim is to explore minority healthcare providers, trained nurses and nurses’ assistants, and their experiences of challenges when working (...) in a multicultural team in a Norwegian context. Research method: The study has a qualitative design, using narrative interviews, and a phenomenological–hermeneutic analysis method to explore the experiences of challenges in dementia care. Ethical considerations: The study was approved by The Norwegian Regional Ethics Committee, and the Norwegian Social Science Data Services. Participation and research context: Five informants from different African, Asian and European countries participated in the study. The study was conducted in a Norwegian nursing home, in a dementia care unit. Findings: The results show that minority health care providers experience and find meaning in being a member of a team, they overcome challenges, characterized by the interdependency in the team, appreciating new cultural experiences and striving to belong. They must overcome challenges such as language problems and the feeling of strangeness. Discussion: The findings are discussed considering Løgstrup’s ethic of proximity, the ethical demand of trust, and interdependency. The ethical demand is an answer to a common, transparent, unspoken agreement to be met, seen, and understood. Conclusion: The study shows that cooperation in a multi-professional and multi-ethnic team is important, and secures the quality of care to persons with dementia. Further research is necessary to examine the relation between a multi-ethnic staff and the patients experiencing dementia. Further research is necessary to examine ethnicity, the relation between a multi-ethnic staff, the patients experiencing dementia and next of kin. (shrink)

Background Patient-centeredness, respect for patient autonomy, and shared decision-making have now made it to center stage in discussions on quality of care. Knowing what actually counts in care and how it should be accomplished from the patients’ and nurses’ perspective seems crucial. Aim To explore how patients and their nurses perceive the importance and enactment of values in their healthcare. Research design An observational, cross-sectional study using a self-developed questionnaire, consisting of 15 items related to seven values (...) (e.g. uniqueness, autonomy, professionalism, compassion, responsiveness, partnership, and empowerment) as described in the taxonomy of Bastemeijer et al. Participants and research context The survey was completed by 384 patients and 81 nurses. Participants were recruited on eight internal medicine wards of a 1000-bed university hospital in Belgium. Ethical considerations This study was approved by the ethical committee of the Ghent University Hospital (B670201836799). Findings (1) Patients and nurses prioritize values of care differently; (2) nurses report not being able to enact the values they prioritize in actual practice as much as one would like to; and (3) there is a gap in experienced delivery of a comprehensible explanation of all treatment options, a conversation based on equality, making shared decisions, and being non-judgmental between nurses and patients. Discussion Our findings challenge nurses’ overemphasis on professional compassion and uniqueness while arguing for increased attention on authentic shared decision-making and empowerment. The first step to a patient-centered culture truly involving patients in their healthcare is communication and information provision, rather than focusing on tangible and normative constructs. Conclusion Our findings revealed differences in prioritization and actual enactment of values in care between patients and nurses. This was especially so for values related to communication, provision of complete unbiased information, and shared decision-making. Nurses should prioritize providing comprehensible information and using conversations based on equality to make decision together with patients. (shrink)

As physicians encounter an increasingly diverse patient population, socioeconomic circumstances, religious values and cultural practices may present barriers to the delivery of quality care. Increasing cultural competence is often cited as a way to reduce healthcare disparities arising from value and cultural differences between patients and providers. Cultural competence entails not only a knowledge base of cultural practices of disparate patient populations, but also an attitude of adapting one's practice style to meet patient needs and values. (...) Gender roles, relationship dynamics and boundaries are culture specific, and are frequently shaped by religious teachings. Consequently, religion may be conceptualised as a cultural repertoire, or dynamic tool-kit, by which members of a faith adapt and negotiate their identity in multicultural societies. The manner in which Islamic beliefs and values inform Muslim healthcare behaviours is relatively under-investigated. In an effort to explore the impact of Islam on the relationship between patients and providers, we present an Islamic bioethical perspective on cross-gender relations in the patient-doctor relationship. We will begin with a clinical scenario highlighting three areas of gender interaction that bear clinical relevance: dress code, seclusion of members of the opposite sex and physical contact. Next, we provide a brief overview of the foundations of Islamic law and ethical deliberation and then proceed to develop ethicolegal guidelines pertaining to gender relations within the medical context. At the end of this reflection, we offer some practice recommendations that are attuned to the cultural sensitivities of Muslim patient populations. (shrink)

In this paper we aim to discuss a theoretical explanation for the positive relationship between patients’ knowledge and their trust in healthcare personnel. Our approach is based on John Dewey’s notion of continuity. This notion entails that the individual’s experiences are interpreted as interrelated to each other, and that knowledge is related to future experience, not merely a record of the past. Furthermore, we apply Niklas Luhmann’s theory on trust as a way of reducing complexity and enabling (...) action. Anthony Giddens’ description and analysis of the high modern society provides a frame for discussing the preconditions for patient-healthcare personnel interaction. High modernity is dominated by expert systems and demands trust in these. We conclude that patient knowledge and trust in healthcare personnel is related because both knowledge and trust are future- and action-oriented concepts. The traits of high modernity provides opportunities and challenges as the personnel can and must perform discretion. This discretion must be made in a context where knowledge is considered uncertain and preliminary. (shrink)

As physicians encounter an increasingly diverse patient population, socioeconomic circumstances, religious values and cultural practices may present barriers to the delivery of quality care. Increasing cultural competence is often cited as a way to reduce healthcare disparities arising from value and cultural differences between patients and providers. Cultural competence entails not only a knowledge base of cultural practices of disparate patient populations, but also an attitude of adapting one's practice style to meet patient needs and values. (...) Gender roles, relationship dynamics and boundaries are culture specific, and are frequently shaped by religious teachings. Consequently, religion may be conceptualised as a cultural repertoire, or dynamic tool-kit, by which members of a faith adapt and negotiate their identity in multicultural societies. The manner in which Islamic beliefs and values inform Muslim healthcare behaviours is relatively under-investigated. In an effort to explore the impact of Islam on the relationship between patients and providers, we present an Islamic bioethical perspective on cross-gender relations in the patient-doctor relationship. We will begin with a clinical scenario highlighting three areas of gender interaction that bear clinical relevance: dress code, seclusion of members of the opposite sex and physical contact. Next, we provide a brief overview of the foundations of Islamic law and ethical deliberation and then proceed to develop ethicolegal guidelines pertaining to gender relations within the medical context. At the end of this reflection, we offer some practice recommendations that are attuned to the cultural sensitivities of Muslim patient populations. (shrink)

Participatory sense-making is already an established concept within enactivism. It is used to define the participatory nature of cognitive relations, designating that humans and other organisms make sense of their surrounding environments not just on their own. They build cooperative networks, working together, to create ways of making sense of the world. However, so far little attention has been paid to how enactive concepts, such as participatory sense-making, may apply to the field of bioethics, understood here as health care (...) ethics. In this paper, I examine health care practices cases of participatory sense-making. The paper aims to show that relations between patients and health care providers (HCPs) can be understood as participatory sense-making relations. To make my case, I discuss the so-called phenomenological interview, as proposed technique in health care. I argue that this interview technique has essential features that can be viewed also as features of participatory sense-making. More specifically, the phenomenological interview is an open-minded, a critical, and pro-active dialogue between patient and health care provider that is meant for the patient to raise self-awareness of their body and medical condition, as well as of the social conditions that may affect that experience and condition. I will argue that phenomenological interviews are exemplary cases of patient-health care provider relations in which both parties actively work together to make sense of what the patient is going through and to find adequate medical responses to that experience. I will conclude by proposing normative guidance based on my analysis of health care practice as participatory sense-making. I argue that viewing patient-HCP relations as participatory sense-making may be helpful for both patients and health care providers in that it shows that health care practice is not just a technical exercise or routine task, but essentially relational and patient-oriented. (shrink)

A volume with 14 chapters on various aspects of the relationship between responsibility and healthcare, plus a substantial introduction that offers a comprehensive overview of the relevant debates and how they relate to one another. Questions of responsibility arise at all levels of health care. Most prominent has been the issue of patient responsibility. Some health conditions that risk death or serious harm are partly the result of lifestyle behaviours such as smoking, lack of exercise, or extreme sports. (...) Are patients with such conditions responsible for them? If so, might healthcare providers, be they state-run systems or private entities, be justified in treating such patients differently? And if they are, which forms of differential treatment are justified? Responsibility isn’t just relevant for patients. Even when individuals affect their health through voluntary behaviour, other influences are also at work before, during, and after the patient’s interaction with the health care system. What are the responsibilities of individual clinicians and other medical professionals, when thinking about individual and public health? What about institutions such as governments or national health care services, or society as a whole? This collection brings together work by world-renowned experts in population ethics, distributive justice, philosophy of action, cognitive science, and medical ethics in order to push the debate forward by elucidating our understanding of these questions, their possible answers, and how they are related. (shrink)

Background: Little is known about U.S. healthcare provider views and practices regarding evidence, counseling, and shared decision-making about in-hospital versus out-of-hospital birth settings. Methods: We conducted 19 in-depth, semistructured, qualitative interviews of eight obstetricians, eight midwives, and three pediatricians from across the United States. Interviews explored healthcare providers’ interpretation of the current evidence and their personal and professional experiences with childbirth within the existing medical, ethical, and legal context in the United States. Results: Themes emerged concerning risks (...) and benefits, decision-making, and patient-provider power dynamics. Collectively, the narratives illuminated fundamental ideological tensions between in- and out-of-hospital providers arising from divergent assignment of value to described risks and benefits. The majority of physicians focused on U.S.-specific data demonstrating increased neonatal morbidity and mortality associated with delayed access to hospital-based interventions, thereby justifying hospital birth as the standard of care. By contrast, midwives emphasized data demonstrating fewer interventions and superior maternal and neonatal outcomes in high-income European countries, where out-of-hospital birth is more common for low-risk birthing people. A key gap in counseling was revealed, as no interviewees offered anticipatory counseling regarding birth setting options. Providers directly and indirectly illustrated the propensity for asymmetric power relations between birth providers and pregnant people, especially in hospital settings. Conclusions: The narratives highlight the common goal of optimizing maternal and neonatal outcomes despite tensions arising from divergent prioritization of specific maternal and neonatal risks. Our findings suggest opportunities to foster collaboration and optimize outcomes via mutual respect and improved integration of care. (shrink)

ObjectiveDignified care protects the patient’s rights and provides appropriate ethical care while improving the quality of nursing care. In this context, the opinions of nurses and patients who receive nursing care about dignified care are important. The aim of this study was to explore the opinions and experiences of Turkish patients and nurses about respectful care of human dignity.MethodsThis descriptive cross-sectional study was conducted in Turkey. Participants were inpatients at cardiology, neurology and neurosurgery clinics and nurses working in (...) these clinics. The data for the study were collected from face-to-face interviews using questionnaires. The percentages of characteristics and preferences of the participants were calculated, and the results were analysed using statistical tests.ResultsA total of 150 patients and 78 nurses participated in the study. The patients stated that the protection of their rights was the most important factor for dignified nursing care. The nurses stated that being careful to not expose the patients’ body and being respectful of the patients’ privacy were important in dignified nursing care. The age of the patient, duration of the disease, number of hospitalisations and length of time the nurses had been working at the clinic caused significant changes in the factors considered important in dignified care.ConclusionsOur findings provide a perspective on dignified care in the Turkish healthcare setting. There were some differences between patients and nurses in the factors considered important for dignified care. The discussion with patients and nurses related to care and practices that protect or detract from human dignity can provide insights to ethics. (shrink)

There is a growing interest in aggregating more biomedical and patient data into large health data sets for research and public benefits. However, collecting and processing patient data raises new ethical issues regarding patient’s rights, social justice and trust in public institutions. The aim of this empirical study is to gain an in-depth understanding of the awareness of possible ethical risks and corresponding obligations among those who are involved in projects using patient data, i.e. healthcare professionals, regulators and policy (...) makers. We used a qualitative design to examine Swiss healthcare stakeholders’ experiences and perceptions of ethical challenges with regard to patient data in real-life settings where clinical registries are sponsored, created and/or used. A semi-structured interview was carried out with 22 participants between July 2014 and January 2015. The interviews were audio-recorded, transcribed, coded and analysed using a thematic method derived from Grounded Theory. All interviewees were concerned as a matter of priority with the needs of legal and operating norms for the collection and use of data, whereas less interest was shown in issues regarding patient agency, the need for reciprocity, and shared governance in the management and use of clinical registries’ patient data. This observed asymmetry highlights a possible tension between public and research interests on the one hand, and the recognition of patients’ rights and citizens’ involvement on the other. The advocation of further health-related data sharing on the grounds of research and public interest, without due regard for the perspective of patients and donors, could run the risk of fostering distrust towards healthcare data collections. Ultimately, this could diminish the expected social benefits. However, rather than setting patient rights against public interest, new ethical approaches could strengthen both concurrently. On a normative level, this study thus provides material from which to develop further ethical reflection towards a more cooperative approach involving patients and citizens in the governance of their health-related big data. (shrink)

Background Little is known about communication between patients, families, and healthcare providers regarding ethical concerns that patients and families experience in the course of illness and medical care. To address this gap in the literature, we surveyed patients and family members to learn about their ethical concerns and the extent to which they discussed them with their healthcare providers. Methods We surveyed adult, English-speaking patients and family members receiving inpatient care in (...) five hospitals in the Washington DC-Baltimore metropolitan area from July 2017 to March 2020. Descriptive statistics were used to determine the frequency, comfortableness, and helpfulness of discussions regarding ethical concerns experienced when sick or receiving medical care. Univariable and multivariable stepwise logistic regression models were used to identify associations between healthcare provider and respondent characteristics and attitudes and (1) the likelihood of speaking to a healthcare provider about their ethical concern and (2) their level of comfort during these discussions. Results Of 468 respondents who experienced ethical issues, 299 (64%) reported discussing the situation with a member of their healthcare team; 74% (197/265) of respondents who had such a discussion found the discussion comfortable, and 77% (176/230) of respondents found the discussion helpful. To make discussions more comfortable and helpful, respondents proposed suggestions in open-ended responses involving (1) content and quality of communication; (2) positive healthcare provider qualities such as empathy, open-mindedness, knowledge, honesty, and trustworthiness; and (3) other contextual factors including having adequate time and available resources. Conclusions Patients and families often have ethical concerns that they discuss with clinicians, and they want clinicians to be routinely receptive and attentive to such discussions. (shrink)

BACKGROUND: There is a growing interest in aggregating more biomedical and patient data into large health data sets for research and public benefits. However, collecting and processing patient data raises new ethical issues regarding patient's rights, social justice and trust in public institutions. The aim of this empirical study is to gain an in-depth understanding of the awareness of possible ethical risks and corresponding obligations among those who are involved in projects using patient data, i.e. healthcare professionals, regulators and (...) policy makers. METHODS: We used a qualitative design to examine Swiss healthcare stakeholders' experiences and perceptions of ethical challenges with regard to patient data in real-life settings where clinical registries are sponsored, created and/or used. A semi-structured interview was carried out with 22 participants (11 physicians, 7 policy-makers, 4 ethical committee members) between July 2014 and January 2015. The interviews were audio-recorded, transcribed, coded and analysed using a thematic method derived from Grounded Theory. RESULTS: All interviewees were concerned as a matter of priority with the needs of legal and operating norms for the collection and use of data, whereas less interest was shown in issues regarding patient agency, the need for reciprocity, and shared governance in the management and use of clinical registries' patient data. This observed asymmetry highlights a possible tension between public and research interests on the one hand, and the recognition of patients' rights and citizens' involvement on the other. CONCLUSIONS: The advocation of further health-related data sharing on the grounds of research and public interest, without due regard for the perspective of patients and donors, could run the risk of fostering distrust towards healthcare data collections. Ultimately, this could diminish the expected social benefits. However, rather than setting patient rights against public interest, new ethical approaches could strengthen both concurrently. On a normative level, this study thus provides material from which to develop further ethical reflection towards a more cooperative approach involving patients and citizens in the governance of their health-related big data. (shrink)

_Background:_ Weight-related stigma is reported frequently by higher body-weight patients in healthcare settings. Bariatric surgery triggers profound weight loss. This weight loss may therefore alleviate patients' experiences of weight-related stigma within healthcare settings. In non-clinical settings, weight-related stigma is associated with weight-inducing eating patterns. Dietary adherence is a major challenge after bariatric surgery. _Objectives:_ (1) Evaluate the relationship between weight-related stigma and post-surgical dietary adherence; (2) understand if weight loss reduces weight-related stigma, thereby improving post-surgical (...) dietary adherence; and (3) explore provider and patient perspectives on adherence and stigma in healthcare settings. _Design:_ This mixed methods study contrasts survey responses from 300 postoperative bariatric patients with ethnographic data based on interviews with 35 patients and extensive multi-year participant-observation within a clinic setting. The survey measured experiences of weight-related stigma, including from healthcare professionals, on the Interpersonal Sources of Weight Stigma scale and internalized stigma based on the Weight Bias Internalization Scale. Dietary adherence measures included patient self-reports, non-disordered eating patterns reported on the Disordered Eating after Bariatric Surgery scale, and food frequencies. Regression was used to assess the relationships among post-surgical stigma, dietary adherence, and weight loss. Qualitative analyses consisted of thematic analysis. _Results:_ The quantitative data show that internalized stigma and general experiences of weight-related stigma predict worse dietary adherence, even after weight is lost. The qualitative data show patients did not generally recognize this connection, and health professionals explained it as poor patient compliance. _Conclusion:_ Reducing perceptions of weight-related stigma in healthcare settings and weight bias internalization could enhance dietary adherence, regardless of time since patient's weight-loss surgery. (shrink)

_This paper will explore two strands of Vilhjálmur Árnason’s extensive body of work: his analysis of dialogue ethics within medical ethics and his analysis of ethics in the Icelandic sagas. The central thesis is that combining these two strands, bioethics and literary analysis, can provide valuable insights to further the discussion of ethics among citizens in multicultural communities. _ _Vilhjálmur’s 1 analysis of the Icelandic sagas shows that the sagas have a specific value foundation, specific virtues as well as narrative (...) in how to present the ethical aspects. In the field of bioethics, he has developed the study of dialogue ethics in several aspects, such as between patient and professional, in interdisciplinary research, and in public deliberation. By integrating insights from historic literary studies with contemporary bioethical research we gain an interesting platform for a discussion on Western assumptions of what constitutes a good dialogue. One of the core aspects in dialogue ethics is how to develop the procedure for a fair, open-minded, and oppression-free discussion in ethical issues. Vilhjálmur’s contributions are summarized here, but could they also be extended beyond the Icelandic and Western horizon?_ _I will compare his ethical framework to a recent parallel discussion on the claims of indigenous peoples for a fair dialogue. That is, a dialogue that must be inclusive with a carefulness about deciding the foundation of inherent values and the procedure of how to perform the dialogue. Finally, I draw conclusions on what dialogue ethics will gain from this explorative work._ _Keywords: _dialogue ethics, one health approaches, Indigenous peoples, bioethics, interdisciplinarity, ethics in the Icelandic sagas, medical ethics, literary analysis, multicultural communities. (shrink)

Relation between physicians and pharmaceutical industry is required for the benefit of the patient. But it may turn into business and overthrow the patients’ benefit. The relation might be in question at present and in future. Several questions are flowing in Bangladesh. To solve these queries we have explored the situation in developed and developing countries. The physicians and associations of pharmaceutical industries developed several ethical guidelines in those countries. They have addressed the long lasting issues on gift (...) provided to physician, cash back, sample, industry sponsored scientific meetings, research and hospitality. There are huge restrictions to ensure the right of the patient’s e.g. limitation of inexpensive gift by the pharmaceuticals, avoiding expensive medicine instead of equally effective low priced medicine. We are lacking behind to protect the patient right properly: regulation, adherence to existing guide line, lack of guidance from statutory bodies. The current scenario is far behind the right of patient. In Bangladesh it is not yet addressed either by professionals or by pharmaceutical associations. It is the immediate need to construct a guide line for physicians and pharmaceutical industry of Bangladesh.Bangladesh Journal of Bioethics 2015 Vol.6 (1):1-5. (shrink)

BackgroundCancer patients often suffer from psychological distress during or after cancer treatment, but the use of psycho-oncological care among cancer patients is limited. One of the reasons might be that the way psycho-oncological care is organized, does not fit patients’ preferences. This study aimed to obtain detailed insight into cancer patients’ preferences regarding the organization of psycho-oncological care.Methods18 semi-structured interviews were conducted among cancer patients. Patients completed psycho-oncological treatment between 2015 and 2020 at (...) the psychology department in a general hospital or a center specialized in psychological cancer care in the Netherlands. The interview comprised questions related to preferences regarding the institute where to receive treatment, the psychologist who provides treatment, and the type of treatment, as well as questions related to experienced barriers and facilitators to receive psycho-oncological care. Interviews were digitally recorded and transcribed verbatim. Data were analyzed individually by two coders into key issues and themes.ResultsRegarding the institute, easy accessibility and prompt availability of psychol-oncological care were considered important. Regarding the psychologist, most participants had a strong preference to be treated by a psychologist specialized in cancer or other somatic diseases. Individual face-to-face therapy was preferred above other types of treatment. Several barriers were mentioned to receive psycho-oncological treatment, among which poor accessibility to psycho-oncological care, lack of knowledge on the possibilities for psycho-oncological treatment, and stigma. Most frequently mentioned facilitators were being assertive to ask for help, having a good relationship with the healthcare professional, and the integration of psycho-oncological support within medical cancer care.ConclusionFrom the patient’s perspective, the organization of psycho-oncological care for cancer patients should focus on easy accessibility and availability, delivered by specialized psychologists, and integration in medical cancer care. Online and group therapy are acceptable, but individual face-to-face therapy is preferred. It is warranted to increase awareness on psycho-oncological care targeting both patients and healthcare providers. (shrink)

Delivering healthcare to undocumented migrants presents a complex challenge for healthcare providers. Integrating advocacy efforts into their daily practices can be ambiguous in practical terms, stemming from the intricate task of addressing the health needs of this population while simultaneously advocating for their health rights within the constraints imposed on them. This study seeks to consolidate findings from literature regarding the advocacy approaches employed by healthcare providers and the correlated ethical challenges. We conducted a scoping (...) review of qualitative literature by systematically searching four databases—PubMed/Medline, Embase, Cinahl, and Cochrane Library. For developing our search strategy, we employed the PICO (Population, Intervention, Comparison, Outcome) scheme. Our analysis followed the qualitative content analysis approach proposed by Graneheim and Lundman. 30 studies were included, revealing a cumulative total of 915 healthcare providers who were interviewed. A total of 30 themes emerged comprising 14 advocacy approaches and 16 ethical challenges. Healthcare providers made a deliberate choice to engage in advocacy, responding to injustices experienced by undocumented migrants. The spectrum of advocacy initiatives varied, encompassing voluntary participation in healthcare provision, empathetic understanding, and healthcare-focused strategies. We also identified numerous correlated ethical challenges, necessitating healthcare providers to strike a balance between their eagerness to assist and their professional competence, respect the autonomy of undocumented migrants, and establish trust with them. These findings not only offer practical guidance for healthcare providers to enhance accessibility to healthcare services for undocumented migrant patients but also foster awareness of the ethical challenges that may arise in their advocacy roles. (shrink)

Healthcare provision, like many other sectors of society, is undergoing major changes due to the increased use of data-driven methods and technologies. This increased reliance on big data in medicine can lead to shifts in the norms that guide healthcare providers and patients. Continuous critical normative reflection is called for to track such potential changes. This article presents the results of an interview-based study with 20 German and Swiss experts from the fields of medicine, life science (...) research, informatics and humanities of digitalisation. The aim of the study was to explore expert opinions regarding current challenges and opportunities related to data-driven medicine and medical research and to provide a methodological framework for empirically grounded, continuous normative reflection. To this end, we developed a heuristic tool to map and structure empirical findings for normative analysis. Using this tool, our interview material points to a polarisation between individualistic and collectivistic orientated argumentations among experts. The study shows that a multilevel analysis is required to deal with complex normative implications of data-driven approaches in medical research and healthcare. (shrink)

Objectives: The aim of this study is to find and compare the current situation between common people and healthcare providers’ preferences for a good death in the context of Chinese culture. Methods: A cross-sectional anonymous questionnaire survey covering 190 ordinary Chinese people and 323 healthcare providers was conducted. An inventory of the good death was translated and the subjects were surveyed about their attitude toward it. Ethical considerations: Permission to conduct the study was granted by (...) department chiefs, nurse managers and the participants themselves. The participants were informed that they took part on a voluntary and anonymous basis, that they could withdraw at any time, that they had the right to ignore questions they did not wish to answer, and that whatever they chose to do would not jeopardize their employment conditions. Results: The attributes that were perceived as important by major respondents for a good death were maintaining hope and pleasure, good relationship with medical staff, good relationship with family, independence, environment comfort, being respected as an individual, preparation for death, physical and psychological comfort, dying in a favorite place, and not being a burden to others. And some relatively less important characteristics were life completion, receiving enough treatment, natural death, controlling over the future, unawareness of death, pride and beauty, feeling that one’s life is worth living, and religious and spiritual comfort. We also found that healthcare providers were more likely than general out-patients to perceive “physical and psychological comfort,” “dying in a favorite place,” “good relationship with medical staff,” and “natural death” as important for a good death. Conclusion: This study offers healthcare providers in China a fundamental understanding of the normal expectations of the general public for a good death. It is believed that these findings in our study are valuable to improve palliative care in China. We compared the attitudes of Chinese and Westerners and found some differences, which suggested that cultural difference should be an important consideration to achieve a good death in China. We also found that healthcare providers see good death differently from general public, indicating that the criteria for good death warrant further study. (shrink)

Patient engagement in healthcare is increasingly discussed in the literature, and initiatives engaging patients in quality improvement activities, organizational design, governance, and research are becoming more and more common and have even become mandatory for certain health institutions. Here we discuss a number of ethical challenges raised by this engagement from patients from the perspectives of research, organizational/quality improvement practices, and patient experiences, while offering preliminary recommendations as to how to address them. We identified three broad categories (...) of ethical issues that intersect between the different types of patient engagement: (1) establishing a shared vision about goals of patient engagement and respective roles; (2) the process and method of engaging with patients; and (3) practical aspects of patient engagement. To explain these issues, we build from our personal, professional, and academic experiences, as well as traditions such as pragmatism and hermeneutics that stress the importance of participation, empowerment, and engagement. Patient engagement can be highly valuable at numerous levels, but particular attention should be paid to the process of engaging with patients and related ethical issues. Some lessons from the literature on the ethics of participatory research can be translated to organizational and quality improvement practices. (shrink)

This paper considers what concept of accommodation is necessary to identify and address discrimination, disadvantages and disparities in such a way that the plurality of religious people with their beliefs, values and practices may be justly accommodated in healthcare. It evaluates threats to the possibility of such accommodation pertaining by considering what beliefs and practices might increase the risk of unjust discrimination against and disadvantage for religious people, whether as individuals or as groups; and the risk of disparities (...) class='Hi'>between the care provided to religious people. The claim is that there is an important cluster of risks that are political in kind and emergent within philosophical bioethics. While not amounting (yet) to a trend, they are sufficiently threatening to a just civic life for patients and healthcare staff as to warrant scrutiny. After an Introductory Section 1, Section 2 evaluates a criticism of ‘accommodation’ and the apparently additional health-related requirements that those of religious faith demand, when compared with other people. It does so by comparing Lori Beaman's idea of agonism with that of a distinct and somewhat complementary approach in Jonathan Chaplin's political philosophy, before examining the role of established religion in setting the conditions for the accommodation of religion and belief in healthcare. Section 3 examines risks to such accommodation by engaging critically with three health-related instantiations of political philosophy that differ radically from both Beaman and Chaplin. A concluding Section 4 focusses on appropriate modes of communicating about religious and other beliefs in healthcare. (shrink)

Background In 2021, Spain became the first Southern European country to grant and provide the right to euthanasia and medically assisted suicide. According to the law, the State has the obligation to ensure its access through the health services, which means that healthcare professionals’ participation is crucial. Nevertheless, its implementation has been uneven. Our research focuses on understanding possible ethical conflicts that shape different positions towards the practice of Medical Assistance in Dying, on identifying which core ideas may be (...) underlying them, and on suggesting possible reasons for this disparity. The knowledge acquired contributes to understanding its complexity, shedding light into ambivalent profiles and creating strategies to increase their participation. Methods We conducted an exploratory qualitative research study by means of semi-structured interviews (1 h) with 25 physicians and nurses from primary care (12), hospital care (7), and palliative care (6), 17 women and 8 men, recruited from Madrid, Catalonia, and Andalusia between March and May 2023. Interviews were recorded, transcribed, and coded in Atlas.ti software by means of thematic and interpretative methods to develop a conceptual model. Results We identified four approaches to MAiD: Full Support (FS), Conditioned Support (CS), Conditioned Rejection (CR), and Full Rejection (FR). Full Support and Full Rejection fitted the traditional for and against positions on MAiD. Nevertheless, there was a gray area in between represented by conditioned profiles, whose participation cannot be predicted beforehand. The profiles were differentiated considering their different interpretations of four core ideas: end-of-life care, religion, professional duty/deontology, and patient autonomy. These ideas can intersect, which means that participants' positions are multicausal and complex. Divergences between profiles can be explained by different sources of moral authority used in their moral reasoning and their individualistic or relational approach to autonomy. Conclusions There is ultimately no agreement but rather a coexistence of plural moral perspectives regarding MAiD among healthcare professionals. Comprehending which cases are especially difficult to evaluate or which aspects of the law are not easy to interpret will help in developing new strategies, clarifying the legal framework, or guiding moral reasoning and education with the aim of reducing unpredictable non-participations in MAID. (shrink)

Recognition that the Principle of Respect for Autonomy fails to work in family-centric societies such as Singapore has recently led to the promotion of relational autonomy as a suitable framework within which to place healthcare decision making. However, empirical data, relating to patient and family opinions and the practices of healthcare professionals in Confucian-inspired Singapore, demonstrate clear limitations on the ability of a relational autonomy framework to provide the anticipated compromise between prevailing family decision-making norms and adopted (...) Western led atomistic concepts of autonomy. Evidence suggests that despite a growing infusion of Western influence, there is still little to indicate any major shift to individual decision making, particularly in light of the way society and healthcare are structured. Similarly, the lack of employing a shared decision-making model and data that discredit the notion that the complex psychosocial and cultural factors that affect the decision making may be considered “content neutral” not only prevents the application of relational autonomy but questions the viability of the values behind the Principle of Respect for Autonomy. Taking into account local data and drawing upon a wider concept of personhood that extends beyond prevailing family-centric ideals along with the complex interests that are focused upon the preservation of the unique nature of personhood that arises from the Ring Theory of Personhood, we propose and “operationalize” the employing of an authoritative welfare-based approach, within the confines of best interest decision making, to better meet the current care needs within Singapore. (shrink)

Euthanasia and physician assisted-suicide are terms used to describe the process in which a doctor of a sick or disabled individual engages in an activity which directly or indirectly leads to their death. This behavior is engaged by the healthcare provider based on their humanistic desire to end suffering and pain. The psychiatrist's involvement may be requested in several distinct situations including evaluation of patient capacity when an appeal for euthanasia is requested on grounds of terminal somatic illness or (...) when the patient is requesting euthanasia due to mental suffering. We compare attitudes of 49 psychiatrists towards euthanasia and assisted suicide with a group of 54 other physicians by means of a questionnaire describing different patients, who either requested physician-assisted suicide or in whom euthanasia as a treatment option was considered, followed by a set of questions relating to euthanasia implementation. When controlled for religious practice, psychiatrists expressed more conservative views regarding euthanasia than did physicians from other medical specialties. Similarly female physicians and orthodox physicians indicated more conservative views. Differences may be due to factors inherent in subspecialty education. We suggest that in light of the unique complexity and context of patient euthanasia requests, based on their training and professional expertise psychiatrists are well suited to take a prominent role in evaluating such requests to die and making a decision as to the relative importance of competing variables. (shrink)

Disorders of consciousness (DOC) are a family of related neurological syndromes characterized by deficits of varying degrees of wakefulness (e.g., sleep–wake cycles and arousal) or awareness (e.g., reacting to stimuli, interacting with the environment). Although coma rarely persists for more than a few weeks, some patients remain in a subsequent vegetative state or a minimally conscious state for months or years. Caring for patients with DOC raises ethical questions, but the perspectives of healthcare providers on these (...) questions remain poorly documented. We conducted a qualitative study involving healthcare providers with different backgrounds. Semistructured interviews were used to explore attitudes toward ethical issues. We found that contextual (e.g., time, resource allocation) and relational aspects (e.g., communication process, families) shaped how ethical challenges surfaced and were managed. We call for greater awareness of contextual, institutional and social aspects and focus on these issues in training programs. (shrink)

This article aims to contribute to healthcare communication literature by providing factors that result in mistrust and miscommunication for Deaf people. Deaf people experience a lot of health inequity, which can be, in large part, attributed to being a result of communication and misunderstanding between Deaf people and healthcare staff, resulting in mistrust. Presenting outcomes of practical experiments as well as theoretical reasons for the misunderstanding and mistrust allows to make suggestions about how to improve communication for (...) the future. This review can serve as guidance for factors that contribute to miscommunication that should be avoided by healthcare staff and for lessons learned from positive experiences that should be scaled up and applied to ensure more clear and supportive communication. (shrink)

Background: The concept of patient advocacy is still poorly understood and not clearly conceptualized. Therefore, there is a gap between the ideal of patient advocacy and the reality of practice. In order to increase nursing actions as a patient advocate, a comprehensive and clear definition of this concept is necessary. Research objective: This study aimed to offer a comprehensive and clear definition of patient advocacy. Research design: A total of 46 articles and 2 books published between 1850 and (...) 2016 and related to the concept of patient advocacy were selected from six databases and considered for concept analysis based on Rodgers’ evolutionary approach. Ethical considerations: This study was approved by the Research Ethics Committee of Tarbiat Modares University. Findings: The attributes of patient advocacy are safeguarding (track medical errors, and protecting patients from incompetency or misconduct of co-workers and other members of healthcare team), apprising (providing information about the patient’s diagnosis, treatment, and prognosis, suggesting alternatives of healthcare, and providing information about discharge program), valuing (maintaining self-control, enabling patients to make decisions freely, maintaining individualization and humanity, maintaining patient privacy, and acting in the patients’ values, culture, beliefs, and preferences), mediating (liaison between patients, families, and healthcare professionals, being patients’ voice, and communicate patient preferences and cultural values to members of the healthcare team), and championing social justice in the provision of healthcare (confronting inappropriate policies or rules in the healthcare system, identifying and correcting inequalities in delivery of health services, and facilitating access to community health services and health resources). Discussion and conclusion: The analysis of this concept can help to develop educational or managerial theories, design instruments for evaluating the performance of nurses in patient advocacy, develop strategies for enhancing patient advocacy, and improve the safety and quality of nursing care in the community and healthcare system. (shrink)

Background: Truth-telling toward terminally ill patients is a challenging ethical issue in healthcare practice. However, there are no existing ethical guidelines or frameworks provided for Chinese nurses in relation to decision-making on truth-telling of terminal illness and the role of nurses thus is not explicit when encountering this issue. Objectives: The intention of this paper is to provide ethical guidelines or strategies with regards to decision-making on truth-telling of terminal illness for Chinese nurses. Methods: This paper initially present (...) a case scenario and then critically discuss the ethical issue in association with ethical principles and philosophical theories. Instead of focusing on attitudes toward truth disclosure, it aims to provide strategies regarding this issue for nurses. It highlights and discusses some of the relevant ethical assumptions around the perceived role of nurses in healthcare settings by focusing on nursing ethical virtues, nursing codes of ethics, and philosophical perspectives. And Confucian culture is discussed to explicate that deontology does not consider family-oriented care in China. Conclusion: Treating each family individually to explore the family’s beliefs and values on this issue is essential in healthcare practice and nurses should tailor their own approach to individual needs regarding truth-telling in different situations. Moreover, the Chinese Code of Ethics should be modified to be more specific and applicable. Finally, a narrative ethics approach should be applied and teamwork between nurses, physicians and families should be established to support cancer patients and to ensure their autonomy and hope. Ethical considerations: This paper was approved by the Ethics Committee of The Second Affiliated Hospital of Guangzhou Medical University. The authors have obtained consent to use the case study and it has been anonymised to preserve the patient's confidentiality. (shrink)

Reality medical television, an increasingly popular genre, depicts private medical moments between patients and healthcare providers. Journalists aim to educate and inform the public, while the participants in their documentaries—providers and patients—seek to heal and be healed. When journalists and healthcare providers work together at the bedside, moral problems precipitate. During the summer of 2010, ABC aired a documentary, Boston Med, featuring several Boston hospitals. We examine the ethical issues that arise when (...) journalism and medicine intersect. We provide a framework for evaluating the potential benefits and harms of reality medical television, highlighting critical issues such as informed consent, confidentiality, and privacy. (shrink)

Background The growing number of older people worldwide poses challenges for health policy, particularly in the Global North, where policymakers increasingly expect seniors to live and receive care at home. However, healthcare professionals, particularly in home-based care, face dilemmas between adhering to care ideals and meeting external demands. Although they strive to uphold ethical care standards, they must deal with patients’ needs, cooperation with colleagues and management guidelines. Home-based care is an essential part of healthcare services (...) in Norway, but staff struggle with high patient numbers and time management. This article focuses on how staff deal with ethical challenges related to contextual and organisational constraints. Methods An ethnographic fieldwork in three municipalities in South-East Norway. The first author conducted three to four months of participant observation in each municipality. In addition, she conducted in-depth interviews with key informants in two municipalities and a focus group interview with seven home-based care workers in one municipality. The data was analysed by using a reflexive thematic analysis. Results Staff in home-based care are frequently more loyal to the patient than to the system and to their own needs. To provide good care, all informants disregarded the patient’s formal decision, i.e. they provided more care than the formalised decision stipulated. To prioritise beneficence to patients, informants also disregarded some of the rules applicable in home-based care. In addition, staff accepted risks to their own safety and health to provide care in the patient’s home. Conclusion The loyalty of home-based care staff to their patients can go beyond their loyalty to the rules of the system and even their own safety. This commitment might be attributed to a sense of doing meaningful work, to providing relationship-based and individualised care, and to strong moral courage. However, the staff’s emphasis on flexibility and individualised care also brings challenges related to unclear boundaries related to patient care. (shrink)

Background: Privacy is one of the key principles in health care and requires understanding of the cultural aspects of patients’ privacy. In Western cultures privacy is focused on the individual, however, in some non-Western cultures, privacy is linked to the collectivism of the community or religion. Objectives: The objective of this study is to describe the factors related to the realisation of privacy of Somali refugees in health care by describing the factors related to the patient, healthcare professional (...) and interpreter. Research design: The data were collected from Somali refugees (N = 29) using a qualitative questionnaire and were analysed by deductive content analysis based on factors related to the patient, healthcare professional and interpreter. Ethical consideration: Ethical approval was obtained from the University of Turku, and research permissions were obtained from all participating institutions. Findings: Factors related to the patient were as follows: privacy was realised when the patient had self-determination; was able to act according to Somali culture; had knowledge and understanding of treatment; and trusted the healthcare professional. Factors related to the healthcare professional were as follows: the healthcare professional was expected to be of the same gender as the patient, act professionally, focus on the health issues, and to have knowledge and understanding of the Somali culture. Factors related to the interpreter were as follows: the presence and Somali background of the interpreter decreased privacy; the interpreter was expected to be of the same gender as the patient; to have competence and to behave professionally. Discussion: Gender congruence, professionalism and caring attitude and common understanding between the Somali patient and Finnish provider increase the privacy of Somali patients. Conclusion: Somali patients’ privacy can be improved by increasing healthcare professionals’ understanding of Somali culture, acknowledging the importance of gender concordance in relation to healthcare professionals and interpreters, and the effect of the presence of the interpreter on patients’ privacy. (shrink)

Background In an effort to improve the quality of medical care, the philosophy of patient-centered care has become integrated into almost every aspect of the medical community. Despite its widespread acceptance, among patients and practitioners, there are concerns that rapid advancements in artificial intelligence may threaten elements of patient-centered care, such as personal relationships with care providers and patient-driven choices. This study explores the extent to which patients are confident in and comfortable with the use of these (...) technologies when it comes to their own individual care and identifies areas that may align with or threaten elements of patient-centered care. Methods An exploratory, mixed-method approach was used to analyze survey data from 600 US-based adults in the State of Florida. The survey was administered through a leading market research provider (August 10–21, 2023), and responses were collected to be representative of the state’s population based on age, gender, race/ethnicity, and political affiliation. Results Respondents were more comfortable with the use of AI in health-related tasks that were not associated with doctor-patient relationships, such as scheduling patient appointments or follow-ups (84.2%). Fear of losing the ‘human touch’ associated with doctors was a common theme within qualitative coding, suggesting a potential conflict between the implementation of AI and patient-centered care. In addition, decision self-efficacy was associated with higher levels of comfort with AI, but there were also concerns about losing decision-making control, workforce changes, and cost concerns. A small majority of participants mentioned that AI could be useful for doctors and lead to more equitable care but only when used within limits. Conclusion The application of AI in medical care is rapidly advancing, but oversight, regulation, and guidance addressing critical aspects of patient-centered care are lacking. While there is no evidence that AI will undermine patient-physician relationships at this time, there is concern on the part of patients regarding the application of AI within medical care and specifically as it relates to their interaction with physicians. Medical guidance on incorporating AI while adhering to the principles of patient-centered care is needed to clarify how AI will augment medical care. (shrink)

Objective Moral distress is a complex phenomenon experienced by healthcare professionals. This study examined the relationships between key dimensions of Organizational Culture in Healthcare (OCHC)—perceived psychological safety, ethical climate, patient safety—and healthcare professionals’ perception of moral distress.Design Cross-sectional surveySetting Pediatric and adult critical care medicine, and adult hospital medicine healthcare professionals in the United States.Participants Physicians (n = 260), nurses (n = 256), and advanced practice providers (n = 110) participated in the study.Main outcome (...) measures Three dimensions of OCHC were measured using validated questionnaires: Olson’s Hospital Ethical Climate Survey, Agency for Healthcare Research and Quality’s Patient Safety Culture Survey, and Edmondson’s Team Psychological Safety Survey. The perception of moral distress was measured using the Moral Distress Amidst a Pandemic Survey. The hypothesized relationships between various dimensions were tested with structural equation modeling (SEM).Results Adequate model fit was achieved in the SEM: a root-mean-square error of approximation =0.072 (90% CI 0.069 to 0.075), standardized root mean square residual = 0.056, and comparative fit index =0.926. Perceived psychological safety (β= −0.357, p <.001) and patient safety culture (β = −0.428, p<.001) were negatively related to moral distress experience. There was no significant association between ethical climate and moral distress (β = 0.106, p = 0.319). Ethical Climate, however, was highly correlated with Patient Safety Culture (factor correlation= 0.82).Conclusions We used structural equation model to test a theoretical model of multi-dimensional organizational culture and healthcare climate (OCHC) and moral distress.Significant associations were found, supporting mitigating strategies to optimize psychological safety and patient safety culture to address moral distress among healthcare professionals. Future initiatives and studies should account for key dimensions of OCHC with multi-pronged targets to preserve the moral well-being of individuals, teams, and organizations. (shrink)

Background: COVID-19 pandemic has led to heightened moral distress among healthcare providers. Despite evidence of gendered differences in experiences, there is limited feminist analysis of moral distress. Objectives: To identify types of moral distress among women healthcare providers during the COVID-19 pandemic; to explore how feminist political economy might be integrated into the study of moral distress. Research Design: This research draws on interviews and focus groups, the transcripts of which were analyzed using framework analysis. Research (...) Participants and Context: 88 healthcare providers, based in British Columbia Canada, participated virtually. Ethical Considerations: The study received ethical approval from Simon Fraser University. Findings: Healthcare providers experienced moral dilemmas related to ability to provide quality and compassionate care while maintaining COVID-19 protocols. Moral constraints were exacerbated by staffing shortages and lack of access to PPE. Moral conflicts emerged when women tried to engage decision-makers to improve care, and moral uncertainty resulted from lack of clear and consistent information. At home, women experienced moral constraints related to inability to support children’s education and wellbeing. Moral conflicts related to lack of flexible work environments and moral dilemmas developed between unpaid care responsibilities and COVID-19 risks. Women healthcare providers resisted moral residue and structural constraints by organizing for better working conditions, childcare, and access to PPE, engaging mental health support and drawing on professional pride. Discussion: COVID-19 has led to new and heightened experiences of moral distress among HCP in response to both paid and unpaid care work. While many of the experiences of moral distress at work were not explicitly gendered, implicit gender norms structured moral events. Women HCP had to take it upon themselves to organize, seek out resources, and resist moral residue. Conclusion: A feminist political economy lens illuminates how women healthcare providers faced and resisted a double layering of moral distress during the pandemic. (shrink)

We explore whether a Rawlsian approach might provide a guiding philosophy for the development of a healthcare system, in particular with regard to resolving tensions between different groups within it. We argue that an approach developed from some of Rawls’ principles – using his ‘veil of ignorance’ and both the ‘difference’ and ‘just savings’ principles which it generates – provides a compelling basis for policy making around certain areas of conflict. We ask what policies might be made if (...) those making them did not know if one was patient, doctor, nurse or manager – in this generation or the next. We first offer a brief summary of Rawls’ approach and how we intend to extrapolate from it. We examine how this adapted Rawlsian framework could be applied to specific examples of conflict within healthcare; we demonstrate how this framework can be used to develop a healthcare service which is both sustainable (in its training and treatment of staff, and in encouraging research and innovation) and open (to protect the powers and opportunities of those using the health service). We conclude that while Rawls’ approach has previously been rejected as a means to address specific healthcare decisions, an adapted veil of ignorance can be a useful tool for the consideration of how a just health service should be constructed and sustained. Turning the theoretical into the practical (and combining Rawls’ thought experiment with Scanlonian contractarianism), managers, doctors, patients, carers and nurses could come together and debate conflicting issues behind a hypothetical veil. (shrink)

Background Partnering with patients in healthcare research now benefits from a strong rationale and is encouraged by funding agencies and research institutions. However, this new approach raises ethical issues for patients, researchers, research professionals and administrators. The main objective of this review is to map the literature related to the ethical issues associated with patient partnership in healthcare research, as well as the recommendations to address them. Our global aim is to help researchers, patients, research (...) institutions and research ethics boards reflecting on and dealing with these issues. Methods We conducted a scoping review of the ethical issues and recommendations associated with partnering with patients in healthcare research. After our search strategy, 31 peer reviewed articles published between 2007 and 2017 remained and were analyzed. Results We have identified 58 first-order ethical issues and challenges associated with patient partnership in research, regrouped in 18 second-order ethical themes. Most of the issues are transversal to all phases and stages of the research process and a lot of them could also apply to patient-partnership in other spheres of health, such as governance, quality improvement, and education. We suggested that ethical issues and challenges of partnered research can be related to four ethical frameworks: 1) Research ethics; 2) Research integrity; 3) Organizational ethics, and 4) Relational ethics. Conclusions We have identified numerous ethical issues associated with the recent approach of patient-partnership in research. These issues are more diverse than the issues associated with a more traditional research approach. Indeed, the current discussion on how we address ethical issues in research is anchored in the assumption that patients, as research participants, must be protected from risk. However, doing research with, and not on, the patient involves changes in the way we reflect on the ethical issues associated with this approach to research. We propose to broaden the ethical discussion on partnered research to not only rely on a research ethics framework, but to also frame it within the areas of research integrity, organizational ethics and relational ethics. (shrink)

This clinical vignette stems from French research into sedative practices and their influence on bereavement in spouses of cancer patients. We worked with hospital departments to recruit participants. They were offered a questionnaire and were invited to a research interview. This led us to explore the various issues that palliative care providers may face, including their relationship with the patient’s loved ones, questions about bereavement, and how best to support the bereaved. Feelings of bereavement are difficult to put (...) into words, and there is often concern that talking about it may increase the suffering of the person concerned. The question we raise in this case study is whether fears about talking about bereavement come from the bereaved person or from the caregiver. In other words, for whom is talking about bereavement more painful? This point relates to two ethical challenges in our study: first, we seek to better understand the relationship between spouses of cancer patients and healthcare providers, starting with how to narrate the experience of grief. The second question relates to the ethics of research and specifically the possibility of including patients and family members in the research process. (shrink)

BackgroundSocial support plays an important role for health outcomes. Support for those living with chronic conditions may be particularly important for their health, and even for their survival. The role of support for the survival of cancer patients after receiving an allogeneic hematopoietic cell transplant is understudied. To better understand the link between survival and support, as well as different sources and functions of support, we conducted two studies in alloHCT patients. First, we examined whether social support (...) is related to survival. Second, we examined who provides which support and which specific support-related functions and tasks are fulfilled by lay caregivers and healthcare professionals.MethodsIn Study 1, we conducted a retrospective chart review of alloHCT patients and registered availability of a dedicated lay caregiver and survival. In Study 2, we prospectively followed patients after alloHCT from the same hospital, partly overlapping from Study 1, who shared their experiences of support from lay caregivers and healthcare providers in semi-structured in-depth interviews 3 to 6 months after their first hospital discharge.ResultsPatients with a dedicated caregiver had a higher probability of surviving to 100 days than patients without a caregiver, OR = 2.84, p = 0.042. Study 2 demonstrated the importance of post-transplant support due to patients’ emotional needs and complex self-care regimen. The role of lay caregivers extended to many areas of patients’ daily lives, including support for attending doctor’s appointments, managing medications and financial tasks, physical distancing, and maintaining strict dietary requirements. Healthcare providers mainly fulfilled medical needs and provided informational support, while lay caregivers were the main source of emotional and practical support.ConclusionThe findings highlight the importance of studying support from lay caregivers as well as healthcare providers, to better understand how they work together to support patients’ adherence to recommended self-care and survival. (shrink)

In line with recent proposals for experimental philosophy and philosophy of science in practice, we propose that the philosophy of medicine could benefit from incorporating empirical research, just as bioethics has. In this paper, we therefore take first steps towards the development of an empirical philosophy of medicine, that includes investigating practical and moral dimensions. This qualitative study gives insight into the views and experiences of a group of various medical professionals and patient representatives regarding the conceptualization of health and (...) disease concepts in practice and the possible problems that surround them. This includes clinical, epistemological, and ethical issues. We have conducted qualitative interviews with a broad range of participants (n = 17), working in various health-related disciplines, fields and organizations. From the interviews, we highlight several different practical functions of definitions of health and disease. Furthermore, we discuss 5 types of problematic situations that emerged from the interviews and analyze the underlying conceptual issues. By providing theoretical frameworks and conceptual tools, and by suggesting conceptual changes or adaptations, philosophers might be able to help solve some of these problems. This empirical-philosophical study contributes to a more pragmatic way of understanding the relevance of conceptualizing health and disease by connecting the participants’ views and experiences to the theoretical debate. Going back and forth between theory and practice will likely result in a more complex but hopefully also better and more fruitful understanding of health and disease concepts. (shrink)

Frequently heard among healthcare providers, administrators, students, and educators, especially within the context of interprofessional collaboration, is the phrase: learning with, from, and about the other. Our purpose in writing this article was to explore the relational aspects of interprofessional collaboration and provide a conversational perspective on how this phrase may be co-constructed by members of the interprofessional team, to achieve a contextual understanding for enhanced practice. It is through understanding and analysing the meaning of commonly held words (...) and phrases that we can begin to understand the differences between transactional ways of gaining knowledge and begin to understand how a transformational shift in attitude, identity, and practice can promote learning with, from, and about the other. (shrink)

Background: Ethically difficult situations are frequently encountered by healthcare professionals. Moral case deliberation is one form of clinical ethics support, which has the goal to support staff to manage ethical difficulties. However, little is known which difficult situations healthcare teams need to discuss. Aim: To explore which kinds of ethically difficult situations interprofessional healthcare teams raise during moral case deliberation. Research design: A series of 70 moral case deliberation sessions were audio-recorded in 10 Swedish workplaces. A descriptive, (...) qualitative approach was applied, using thematic content analysis. Ethical considerations: An advisory statement specifying no objections to the study was provided from an Ethical Review Board, and consent to be recorded was assumed by virtue of participation in the moral case deliberation. Findings: Three themes emerged: powerlessness over managing difficult interactions with patients and next-of-kin, unease over unsafe and unequal care, and uncertainty over who should have power over care decisions. The powerlessness comprised feelings of insufficiency, difficulties to respond or manage patient’s/next-of-kin’s emotional needs or emotional outbursts and discouragement over motivating patients not taking responsibility for themselves. They could be uncertain over the patient’s autonomy, who should have power over life and death, disclosing the truth or how much power next-of-kin should have. Discussion: The findings suggest that the nature of the ethically difficult situations brought to moral case deliberations contained more relational-oriented ethics than principle-based ethics, were permeated by emotions and the uncertainties were pervaded by power aspects between stakeholders. Conclusion: MCD can be useful in understanding the connection between ethical issues and emotions from a team perspective. (shrink)

In the issue of futile treatments, patients and healthcare professionals tend to disagree. We conducted an Internet questionnaire survey and explored the Japanese nurses’ attitude toward this topic, comparing with that of laypeople. In total, 522 nurses and 1134 laypeople completed the questionnaire. Nurse respondents were significantly less in favor of providing potentially futile treatments in hypothetical vignettes and stressed quality of life of the patient for judging the futility of a certain treatment. Of them, 85.4% reported having (...) experienced providing such treatments. Reasons for providing them included factors related to not only patients but also healthcare teams. Our results indicate that attitudes among Japanese nurses toward the issue of futile treatments are different from patients and that their actual practice is influenced by several situational factors. (shrink)

Political interaction among citizens who hold opposing moral views commonly requires reaching beyond toleration, toward actual co‐operation with policies one opposes. On the more personal level, however, regarding (e.g.) interactions between healthcare providers and patients, several authors emphasise the importance of preserving integrity. But those who oppose any ‘complicity in evil’ often wrongly conflate instances in which the other's position is (and should be) totally rejected with instances of legitimate, although deep, disagreement. Starting with a striking (...) example from the context of a particular tradition, I argue generally that in the latter sort of disagreements, talk of ‘complicity’ should be largely replaced with a more co‐operative moral stance, grounded in a pluralistic framework. Co‐operation Despite Disagreement (CDD) should be sought either for institutional reasons – akin to the political – or for relational reasons. CDD involves sharing another's perspective and sometimes calls for adopting another's moral judgements in preference to one's own. I seek to identify some of the conditions and circumstances that would justify such a shift, particularly in scenarios involving assistance, such as physician‐assisted suicide (PAS) or the role of an anaesthesiologist in abortion. This discussion is meant to provide examples of the kind of second‐order reasons appropriate for determining the terms for CDD – in distinction from first‐order considerations (e.g., the much‐contested ‘active/passive’ distinction) which are likely to be the subject of the initial disagreement and hence cannot serve to resolve it. (shrink)

A placebo is a substance or intervention believed to be inactive, but is administered by the healthcare professional as if it was an active medication. Unlike standard treatments, clinical use of placebo usually involves deception and is therefore ethically problematic. Our attitudes toward the clinical use of placebo, which inevitably includes deception or withholding information, have a tremendous effect on our practice regarding truth-telling and informed consent. A casual attitude towards it weakens the current practice based on shared decision-making (...) and mutual trust between patients and healthcare professionals. Issues concerning the clinical use of placebo are thus intimately related to patient-provider relationships, the public's trust in medicine, and medical education. A review of recent survey studies suggests that the clinical use of placebo appears to be fairly well accepted among healthcare professionals and is common in clinical settings in various countries. However, we think that an ethical discussion is urgently needed because of its controversial nature. If judged to be ethically wrong, the practice should end. In the present paper, we discuss the ethicality of the clinical use of placebo with deception and argue against it, concluding that it is unethical and should be banned. We will show that most arguments in favor of the clinical use of placebo can be refuted and are therefore incorrect or weak. These arguments will be presented and examined individually. Finally, we will briefly consider issues relevant to the clinical use of placebo without deception. (shrink)

In preparation for the development of a rapid tissue donation programme, we surveyed healthcare providers in our institution about knowledge and attitudes related to RTD with lung cancer patients. A 31-item web based survey was developed collecting data on demographics, knowledge and attitudes about RTD. The survey contained three items measuring participants’ knowledge about RTD, five items assessing attitudes towards RTD recruitment and six items assessing HCPs’ level of agreement with factors influencing decisions to discuss RTD. Response (...) options were presented on a 5-point Likert scale. Ninety-one HCPs participated in the study. 66% indicated they had never heard of RTD prior to the survey, 78% rated knowledge of RTD as none or limited and 95.6% reported not having ethical or religious concerns about discussing RTD with patients. The majority were either not comfortable or not sure if they felt comfortable discussing RTD with cancer patients . 56.1% indicated their knowledge of RTD would play an integral role in their decision to discuss RTD with patients. 71.4% reported concerns with RTD discussion and the emotional state of the patient. Physicians and nurses play an important role in initiating conversations about recruitment and donation to research that can ultimately influence uptake. Increasing HCP knowledge about RTD is a necessary step towards building an RTD programme. Our study provides important information about characteristics associated with low levels of knowledge and practice related to RTD where additional education and training may be warranted. (shrink)

This book focuses on two important, interlinked themes in psychiatry, i.e., the relation between self (or: person), context and psychopathology; and the intrinsic value-ladenness of psychiatry as a practice. -/- Written against the background of scientistic tendencies in today’s psychiatry, it is argued in Part I that psychiatry needs a clinical conception of psychopathology alongside more traditional scientific conceptions; that this clinical conception of psychopathology must be based on a fundamental rethinking of the interaction between illness manifestations, contextual (...) influences and the patient as person, such that psychopathology is conceived as the product of this interaction rather than as the outward manifestation of a broken mechanism within the patient. -/- In Part II, it is shown that self- and context-related factors have a large impact on who one is as a professional. I argue that an analysis is needed of the normative aspects of the relations that sustain and frame professional role-fulfilment. This analysis culminates into a so-called normative practice model (NPM) which distinguishes between qualifying, conditioning and foundational principles (or: rules, norms). The normative practice model helps to locate and resist scientistic defenses of the legitimacy of psychiatry and to replace them by a positive account that provides clinicians (and scientists) the conceptual tools they need to justify what they do in broader contexts. The main thrust of the argument is to show that psychiatry needs a value-sensitive account of its legitimacy, in which other normative dimensions are recognized than those that sustain the expert role. Psychiatrists should in other words not defend the legitimacy of their profession by referring to the expert role solely but provide a broader account in which justice is done to the broader social, legal, and economic contexts of professional activity. The analysis of this inherent normativity begins within clinical practice, it extends to the concept of disease as well as to wider domains of psychiatric care and the sociology of professions, and, finally, amounts into an analysis of the value-ladenness of interactions between healthcare institutions, the government, professional organizations and patient groups. (shrink)

The arts provide openings for symbolic expression by engaging the sensory experience in the body they become a source of insight through embodied cognition and emotion, enabling meaning-making, and acting as a catalyst for change. This synthesis of sensation and enactive, embodied expression through movement and the arts is capitalized on in The BodyMind Approach®. It is integral to this biopsychosocial, innovative, unique intervention for people suffering medically unexplained symptoms applied in primary healthcare. The relevance of embodiment and arts (...) practices in TBMA are discussed in relation to the views of participants in the pursuit of self-management. If widely employed TBMA could have an enormous impact, reach, and significance for patients and global health services. This original pre-clinical trial of qualitative research reports on the perceptions of participant patients with generic MUS, a world-wide issue usually treated by either psychological therapy or physiotherapy. TBMA is not a therapy but a health education program founded upon the concept of an integration of psychological elements with physiological, bodily, and sensory experiences. Thematic analysis of qualitative data sets from open-ended questions in semi-structured interviews and a written questionnaire post intervention is presented. Five aspects which appear to be key to learning self-management were derived from analyzing the data: body with mind connections; importance of facilitation; potential benefits; preparedness for change; self-acceptance/compassion. This article advances the discourse on the nature of self-management for MUS through changing the mind-set and the relationship participants have with their bodily symptom/s through employing embodied methods and arts practices, challenging current, and solely verbal, psychological conceptual frameworks. Rigor lies in the method of data analysis using cross verification of credibility between reported findings and scrutiny by stakeholders. We conclude that facilitated TBMA groups employing embodied methods and arts practices can act as a method for developing the self-management of MUS and improving wellbeing. (shrink)