The development of electronic personal health records by independent vendors and national health systems is understood to empower patients and create a new kind of consumerism in healthcare. With more personal health information at hand, active participation in the management of health and rational purchasing of healthcare services will be possible. Healthcare systems will also be able to contain costs and achieve sustainability. Based on a careful examination of the literature, we argue that many of the declared benefits of this (...) technology are rather unattainable. As the boundaries between the public and private healthcare sectors become blurred and as employers struggle to reduce health insurance expenses, this proclaimed ‘consumer empowerment in healthcare’ is an attempt to introduce a technology and a business model for centralising all relevant PHI to render them economic. We reflect on the consequences for the ‘empowered’ user and we suggest that this new market device has to separate and individually address sufficiently issues of privacy, confidentiality and security before it can claim a place in the digital healthcare ecosystem. (shrink)

Many health care decisions depend not only upon medical facts, but also on value judgments—patient goals and preferences. Until recent decades, patients relied on doctors to tell them what to do. Then ethicists and others convinced clinicians to adopt a paradigm shift in medical practice, to recognize patient autonomy, by orienting decision making toward the unique goals of individual patients. Unfortunately, current medical practice often falls short of empowering patients. In this article, we reflect on whether the current (...) state of medical decision making effectively promotes patients' health care goals. We base our reflections, in part, on research in which we observed physicians making earnest efforts to partner with patients in making treatment decisions, but still struggling to empower patients—failing to communicate clearly to patients about decision-relevant information, overwhelming patients with irrelevant information, overlooking when patients' emotions made it hard to engage in choices, and making recommendations before discussing patients' goals. (shrink)

Discussions surrounding patient engagement and empowerment often use the terms “patient” and “consumer” interchangeably. But do the two terms hold the same meaning, or is a “patient” a passive actor in the health care arena and a “consumer” an informed, rational decision-maker? Has there been a shift in our usage of the two terms that aligns with the increasing commercialization of health care in the U.S. or has the patient/consumer dynamic always been a part of (...) the buying and selling of health care in the American system? Recent discussions of the issue exist in the popular press and in social media forums such as TEDMED, but few direct analyses of the ethical, legal, and policy ramifications of this possible shift in terminology are available in the academic literature. This paper analyzes our usage of the terms and any recent changes in the dynamic and discusses the ethical, legal, and policy implications of this simple terminology for the physicianpatient relationship. (shrink)

There has long been acceptance within healthcare that one of the roles that nurses fulfil is to do with patient advocacy. This has historically been positioned as part of the philosophical and inhe...

The philosophy of empowerment, which is based on the premises that clients must be active, equal and collaborative participants, who are aware and commited to change, has guided research in empowerment interventions. This article reports on a small part of a research study that sought to understand Chinese cancer patients’ conceptualization of empowerment. Qualitative delineation of the concept of empowerment by means of in-depth interviews was carried out with 12 Chinese patients with cancer. The findings showed (...) that empowerment is a process whereby patients develop a sense of inner strength through connection with others, including families, friends and health care professionals. It is also a process of transformation through which they actively develop new perspectives by reframing and reinterpreting their illness. Acceptance of illness was shown to result from a realization of a lack of control in the situation, which is then enhanced by the beliefs of Confucianism and Taoism. In the cancer context, personal control comprises both primary and secondary processes. Active involvement, awareness of the situation, partnership, self-determination and self-reliance are important values in empowerment. The concept and therapeutic foundations of empowerment provide ample legitimacy for its vigorous pursuit in nursing. (shrink)

The dominant discourse in chronic disease management centres on the ideal of person-centred healthcare, with an empowered patient taking an active role in decision-making with their healthcare provider. Despite these encouraging developments toward healthcare democracy, many person-centred conceptions of healthcare and programming continue to focus on the healthcare institution’s perspective and priorities. In these debates, the patient’s voice has largely been absent. This article takes the example of patient empowerment to show how the concept has been (...) influenced by a variety of competing and shifting influences that have led to conceptualisations and programming designed for the patient, but developed without the patient. The framework of epistemic injustice is proposed to unravel the complexity of these omissions. The concept can be defined as a wrong done to someone specifically in their capacity as a knower. It occurs when a person is ignored or not believed due to a prejudice of some kind. It has been applied to healthcare in order to better understand barriers for patient participation and will be used to better understand the problems with current empowerment definitions and implementation strategies. The article will end by proposing some methodologies to facilitate patient-developed concepts of empowerment. (shrink)

The fiduciary nature of the patient-physician relationship requires clinicians to act in the best interest of their patients. Patients are vulnerable due to their health status and lack of medical knowledge, which makes them dependent on the clinicians’ expertise. Competent patients, however, may reject the recommendations of their physician, either refusing beneficial medical interventions or procedures based on their personal views that do not match the perceived medical indication. In some instances, the patients’ refusal may jeopardize their health or (...) life but also compromise the clinician’s moral responsibility to promote the patient’s best interests. In other words, health professionals have to deal with patients whose behavior and healthcare decisions seem counterproductive for their health, or even deteriorate it, because of lack of knowledge, bad habits or bias without being the patients’ free voluntary choice. The moral dilemma centers on issues surrounding the limits of the patient’s autonomy and the clinician’s role to promote the well-being of the patient. In this paper we argue that the use of manipulative strategies, albeit considered beneficent, defeats the purpose of patient education and therefore should be rejected; and the appropriate strategy is to empower patients through patient education which enhances their autonomy and encourages them to become full healthcare partners as opposed to objects of clinical intervention or entities whose values or attitudes need to be shaped and changed through education. First, we provide a working definition of the concept of patient education and a brief historical overview of its origin. Second, we examine the nature of the patient-physician relationship in order to delineate its boundaries, essential for understanding the role of education in the clinical context. Third, we argue that patient education should promote self-rebiasing, enhance autonomy, and empower patients to determine their therapeutic goals. Finally, we develop a moral framework for patient education. (shrink)

We argue that while digital health technologies (e.g. artificial intelligence, smartphones, and virtual reality) present significant opportunities for improving the delivery of healthcare, key concepts that are used to evaluate and understand their impact can obscure significant ethical issues related to patient engagement and experience. Specifically, we focus on the concept of empowerment and ask whether it is adequate for addressing some significant ethical concerns that relate to digital health technologies for mental healthcare. We frame these concerns using (...) five key ethical principles for AI ethics (i.e. autonomy, beneficence, non-maleficence, justice, and explicability), which have their roots in the bioethical literature, in order to critically evaluate the role that digital health technologies will have in the future of digital healthcare. (shrink)

This paper examines the concept of empowerment and how it relates to nursing. It notes that empowerment is a concept used to describe most human activities. The fact that empowerment applies to almost any activity denotes its ambiguity rather than its parsimony. To clarify the concept a definition is offered together with some suggestions for its origin. Some examples of empowerment programmes are given, including the Freirian empowerment philosophy that has had a profound effect in (...) Brazil. The paper then focuses on nursing and discusses whether or not nursing can empower patients. It is argued that nursing cannot empower patients, at least at the present time. Two specific problems are identified as the main reasons why nursing cannot empower patients. It is argued that the first problem or reason is a philosophical one explored using the philosophy of existentialism. The second problem is the nurse–patient interaction and the psychological dynamics involved within such interaction. For example, the continued use of the term ‘patient’ by nurses and other healthcare professionals is seen as militating against empowerment. This is because of the traditional conception of a patient, which invariably assumes not only the patient's sick role but also the passivity associated with being a patient. Furthermore, the hierarchical nature of the profession makes it difficult to empower others. The paper examines some research studies related to patient empowerment. The findings suggest there are problems and some of them stem from the hierarchical and authoritarian nature of nursing. The paper concludes by suggesting ways by which the ideals of patient empowerment may be turned into reality. (shrink)

Founded upon the primacy of the principle of respect for autonomy, three methods of surrogate decision making traditionally have been promoted to help the family and friends of incapacitated patients. Unfortunately, the standards of advance directives, substituted judgment, and best interests are often inadequate in practice. Studies report that few patients have formal, written advance directives; that patients often change their minds about treatment over time; that many patients are simply not ready or willing to plan ahead—in part, because some (...) patients and families simply don’t believe in autonomy; that those patients who do plan ahead often do not communicate their plans; and that while some patients want their directives followed strictly, many prefer that their surrogates use judgment in making decisions. After reviewing articles describing a variety of alternative approaches, a new clinical standard of surrogate empowerment is proposed to reconcile and integrate these observations and concepts. The “procedure” for this clinical standard is presented. (shrink)

“Democratization” has recently become a popular trope in Western public discourses on medicine, where it refers to patient participation in the gathering and distribution of health-related data using various digital technologies, in order to improve healthcare technically and socially. We critically analyze the usage of the term from the perspective of the “politics of buzzwords.” Our claim is that the phrase works primarily to publicly justify the dramatic increase in the application of information and data technologies in healthcare and (...) therefore fosters the corresponding industry. As a buzzword, “democratizing healthcare” is characterized by vagueness, which is why it receives meaning only through a word collective—a group of words that provide it with a context and are often used together with it. We examine key terms associated with “democratization” in the healthcare discourse—participation, empowerment, and personalized medicine—and show that the buzzword receives rhetorical power through the ambiguous reference to these concepts. As a consequence, the idea of “democracy” becomes diluted into meaning merely “access to,” and “healthcare” is reduced to the notion of a preventive, nonacute, monitored form of medical care. (shrink)

Patient and citizen participation is now regarded as central to the promotion of sustainable health and health care. Involvement efforts create and encounter many diverse ethical challenges that have the potential to enhance or undermine their success. This article examines different expressions of patient and citizen participation and the support health ethics offers. It is contended that despite its prominence and the link between patient empowerment and autonomy, traditional bioethics is insufficient to guide participation efforts. In (...) addition, the turn to a “social paradigm” of ethics in examinations of biotechnologies and public health does not provide an account of values that is commensurable with the pervasive autonomy paradigm. This exacerbates rather than eases tensions for patients and citizens endeavoring to engage with health. Citizen and patient participation must have a significant influence on the way we do health ethics if its potential is to be fulfilled. (shrink)

Abstract.The United Kingdom Department of Health initiative on “The Expert Patient” (2001) reflects recent trends in political philosophy, ethics and health services research. The overall objective of the initiative is to encourage patients, particularly those suffering from chronic conditions to become more actively involved in decisions concerning their treatment. In doing so there would be (perhaps) an expectation of better patient compliance and (arguably) a resultant improvement in quality of life. Despite these anticipated beneficial influences on health outcomes, (...) there may be a danger that such initiatives are being carried along by the general swell of enthusiasm for recognising and facilitating the claims of disadvantaged or discriminated against groups. What more attractive than that patients should be “liberated” from what might be seen as the oppression of medical paternalism? To a great extent the potential for success of the Expert Patient venture turns on:(a) whether and to what extent a patient can be considered truly to be an expert and (b) full acceptance by the medical and heath care professions of allowing patients a more equitable and positive role.Whilst clearly the patient is an expert in the hermeneutic sense – it is they and they alone who experience their illness – there is nevertheless a risk of confusing experience with expertise. Experience limited to an individual does not of itself give rise to the generalisations that underlie reliable clinical treatment. Neither do the vast majority of patients possess the physiological and pharmacological knowledge to fully appreciate the biological nature of their illness nor the basis, risks or limitations of therapeutic measures. Might the notion of “The Expert Patient” as informed co-decision maker become a well-meaning but rather vacuous aspiration similar to that of informed consent? Even worse, could patient “empowerment” have a deleterious effect? The paper reviews some of the major issues and concludes that the expert patient initiative could have benefits for both patients and health professionals if operated on the basis of concordance: an informed collaborative alliance that optimises the potential benefits of medical care. (shrink)

Social prescriptions are one term commonly used to describe non-pharmaceutical approaches to healthcare and are gaining popularity in the community, with evidence highlighting psychological benefits of reduced anxiety, depression and improved mood and physiological benefits of reduced risk of cardiovascular disease and reduced hypertension. The relationship between human health benefits and planetary health benefits is also noted. There are, however, numerous barriers, such as duration and frequencies to participate in activities, access, suitability, volition and a range of unpredictable variables impeding (...) a comprehensive approach to their use on a wider scale. From a multidisciplinary perspective, this commentary incorporates a salutogenic and nature-based approach to health, we also provide a range of recommendations that can be undertaken at the patient level to assist in shifting the acknowledged systemic barriers currently occurring. These include using simple language to explain the purpose of health empowerment scripts, ensuing personal commitment to a minimum timeframe, enabling ease of access, co-designing a script program, providing ongoing motivational support and incorporating mindfulness to counter unexpected disruptions. (shrink)

Engaging patients in research conduct and agenda setting is increasingly considered as an ethical imperative, and a way to transcend views of patients as passive subjects by fostering their empowerment. However, patient engagement in research is still an emerging approach with debated definitional and operational frameworks. This song addresses the sometimes difficult encounter and elusive mutual understanding between researchers and patients. “What is PER?” is an impressionistic illustration of the challenges and issues that can be found in the (...) universe of patient engagement in research. (shrink)

Background Care is the basis of the nursing profession and nurse’s caring behavior is one of the important factors in patient satisfaction. On the other hand, psychological empowerment can improve the provision of care services, and leaders have a significant impact on the behavior of followers. This study determined the correlation between ethical leadership, psychological empowerment, and caring behavior from nurses’ perspective. Methods This cross-sectional descriptive study was conducted in 2019. A total of 200 nurses were selected (...) by stratified random sampling. Data were collected with ethical leadership, caring behavior and psychological empowerment questionnaires and analyzed with descriptive statistics and inferential statistics using SPSS20. Results The findings showed a significant correlation between ethical leadership, psychological empowerment and caring behavior of nurses. Also, there was a significant correlation between psychological empowerment and nurses’ caring behavior. The regression analysis showed that ethical leadership and psychological empowerment are a predictor of caring behavior of nurses. Conclusion Applying an ethical leadership style by nursing managers can lead to nurses’ improved psychological empowerment and caring behaviors and ultimately, patient care quality. Thus, considering guidelines at the team and organizational levels and programs such as providing workshops and periodic counseling to cultivate ethical nurse leadership can lead to better caring behavior. (shrink)

Engaging patients in research conduct and agenda setting is increasingly considered as an ethical imperative, and a way to transcend views of patients as passive subjects by fostering their empowerment. However, patient engagement in research is still an emerging approach with debated definitional and operational frameworks. This song addresses the sometimes difficult encounter and elusive mutual understanding between researchers and patients. “What is PER?” is an impressionistic illustration of the challenges and issues that can be found in the (...) universe of patient engagement in research. (shrink)

With healthcare systems under pressure from scarcity of resources and ever‐increasing demand for services, difficult priority setting choices need to be made. At the same time, increased attention to patient involvement in a wide range of settings has given rise to the idea that those who are eventually affected by priority setting decisions should have a say in those decisions. In this paper, we investigate arguments for the inclusion of patient representatives in priority setting bodies at the policy (...) level. We find that the standard justifications for patient representation, such as to achieve patient‐relevant decisions, empowerment of patients, securing legitimacy of decisions, and the analogy with democracy, all fall short of supporting patient representation in this context. We conclude by briefly outlining an alternative proposal for patient participation that involves patient consultants. (shrink)

A decade after the completion of the Human Genome Project, the widespread appeal of personalized genomic medicine's vision and potential virtues for health care remains compelling. Advocates argue that our current medical regime “is in crisis as it is expensive, reactive, inefficient, and focused largely on one size fits all treatments for events of late stage disease.” What is revolutionary about this kind of medicine, its advocates maintain, is that it promises to resolve that crisis by simultaneously increasing the ability (...) to be “personalized,” “predictive,” “preventive,” and “participatory.” Some call personalized genomic medicine “P4 Medicine,” inscribing these cardinal virtues into the movement's name. All of these putative virtues have interesting implications for the future of health care. In this essay, we are especially interested in the claims that personalized medicine will lead to a more “participatory” or “patient‐centered” approach to health care, in which patients are “empowered” to take more personal control over their care. The rhetoric of patient empowerment is nothing new in health care, but personalized medicine is an interesting case study because it portrays empowerment as one of its key virtues and as a mechanism for fixing the health care “crisis.”. (shrink)

The ethics of hope has often been understood as a conflict between duties: do not lie versus do not destroy hope. However, such a way of framing the ethics of hope may easily place healthcare professionals at the side of realism and patients at the side of hope. That leaves unexamined relational dimensions of hope. The objective of this study was to describe a relational ethics of hope based on the perspectives of palliative care patients, their family members and their (...) healthcare professionals. A qualitative longitudinal method based on narrative theories was used. Semi-structured interviews on hope were conducted with twenty-nine palliative care patients, nineteen friends or family members, and fifty-two healthcare professionals, which were recorded and transcribed. Data on hope were thematically analyzed. The researchers wrote memos and did member checking with participants. When participants spoke about hope, they referred to power and empowerment, like the powerful bonding of hope between patients and physicians. They also associated hope with the loss of hope and suffering. Several participating healthcare professionals tried to balance both sides, which involved acknowledgment of hope and suffering. Hope and power were reflected in the ethical concept of empowerment, whereas suffering and the loss of hope were reflected in the ethical concept of compassion. Empowerment and compassion can be balanced in solicitude. In conclusion, a relational ethics of hope requires solicitude, in which healthcare professionals are able to weigh empowerment and compassion within particular relationships. (shrink)

The birth plan has become an increasingly institutionalized tool of Western birth practices, used both in medicalized and midwifery settings. Limited empirical research has been done on the efficacy of birth plans in achieving a commonly-ascribed goal: empowering women in their birth experiences. Still, less work has been done on the ethical dimensions of birth plans. As such, this tool has become nearly ubiquitous in birthing practices, yet they warrant further reflection. In this paper, I articulate the ethical goals of (...) writing birth plans. I frame the birth plan as a narrative project: one that women are encouraged to write out, after careful consideration, as a kind of story that articulates the values, experiences, and relationships that are most important to shaping their experience of a “good birth.” Given the importance of the birth experience for many women, birth plans are ethical projects that the attempt to reframe and improve the deeper political dimensions of birth and patient choice. Birth plans are meant to structure the experience, guide women’s understanding of the process, and foster important clinical relationships. In this way, they are similar to advance directives, which are written to shape successful end-of-life care. Yet, the success of birth plans as tool for this ethical work is questionable. This tool aiming at women’s empowerment and ethical self-reflection often sets women up for a kind of ethical injury, in the attempt to avoid unwanted physical harms of labor and delivery. Birth plans are not legally binding, despite how they are framed as pseudo-contracts. Instead of resisting the challenges of a medicalized birth and to be empowered agreements, birth plans often set women up to fail, often aiming at unreasonable expectations. In my argument, I ask to identify for whom the birth plan works, and in which ways the birth plan experience can be improved. Finally, I address how the failure to give birth plans uptake during emergencies often undermines the patient-physician relationship, working against the primary goal of empowerment. (shrink)

Mobile health tools are often said to empower users by providing them with the information they need to exercise control over their health. We aim to bring clarity to this claim, and in doing so explore the relationship between empowerment and autonomy. We have identified three distinct models embedded in the empowerment rhetoric: empowerment as information, empowerment as control, and empowerment as values. Each distinct model of empowerment gives rise to an associated problem. These (...) problems, the Problem of Interpretation, the Value Alignment Problem, and the Priority Problem, show that mobile health tools in their current form are either insufficient for empowerment or are self‐defeating. These digital health technologies encourage users to adopt an individualized conception of autonomy, one that may weaken the doctor–patient relationship and undermine practices in shared decision making, and ultimately may not deliver on improving the health outcomes for those that need it the most. (shrink)

Ethics consultation is a novel paradigm in European health-care institutions. In this paper, patient involvement in all clinical ethics activities is scrutinized. It is argued that patients should have access to case consultation services via clearly defined access paths. However, the right of both health-care professionals and patients indicates that patients should not always be notified of a consultation. Ethics education, another well-established function of an ethics committee, should equally be available for patients, lay people and hospital staff. Beyond (...) access and utilization, lay membership on a clinical ethics service is a matter of transparency, equal participation, empowerment and democratization. Lay and patient perspectives will contribute to the quality of ethics services on all levels from case consultations to ethics education and policy development. (shrink)

The United Kingdom Central Council for Nursing, Midwifery and Health Visitors (UKCC) document, Exercising Accountability, states that the role of patient's advocate is an essential aspect of good professional nursing practice (1). The author examines the case for and against the nurse being the best person to act as advocate, and critically evaluates the criteria of advocacy. The problematic moral issues arising are discussed, and a case made for negotiation between the members of the multidisciplinary team and the (...) class='Hi'>patient/client (or a significant person to the patient) in order to promote the well-being of the patient and to minimise suffering. She concludes that the health care professional's (including the nurse's) role is to help people to assert control over the factors which affect their lives, that is empowerment, rather than advocacy. (shrink)

The word ‘empowerment’ has become a popular term, widely used as an important claim, also within the health services. In this paper the concept's philosophical roots are traced from Freire and his ‘Pedagogy of the Oppressed’ to the philosophical thoughts of Hegel, Habermas, and Sartre. An understanding of the concept, as a way to facilitate coping and well‐being in patients through reflection and dialogue, emerges. Within an empowerment strategy the important claim on the nurse and the patient (...) will be to reveal the patient's own resources and limitations in times with sickness and reduced functionality to promote the patient's choice to act and cope. From this point of view an education‐programme for the frail elderly is outlined. If the nurse wants to empower the elderly patient she has to be willing to be educated through the dialogue with the patient, and to look for the patient's own meaning of being frail and elderly. The coping and self‐care solutions for the patient may then even be different from the preferences of the nurse, and this does not mean that the empowerment strategy is a failure or that the patient then has to continue without the assistance from the nurse. Within an empowerment strategy, in the Freirerian sense, the important thing is that both the patient and the nurse together critically reflect on the meanings of the sickness so that the patient can be able to make his own conscious choices. (shrink)

Telemedicine is a complex field including various applications and target groups. Especially telehealthcare is seen by many as a means to revolutionize medicine. It gives patients the opportunity to take charge of their own health by using self-tracking devices and allows health professionals to treat patients from a distance. To some, this means an empowerment of patient autonomy as well as an improvement in the quality of care. Others state the dangers of depersonalization of medicine and the pathologization (...) of daily life. This paper examines the ethical implications of telehealthcare, focusing on patient autonomy and quality of care by analyzing metareviews, randomized controlled trials and narrative ethical analyses on the topic. As a result, we conclude that the technically enhanced encounter between patients and health professionals may mean an empowerment of patient autonomy when it goes along with a personal relationship based on trust, assistance and support. When it comes to the quality of care, telehealthcare may lead to an improvement as long it is adopted to the patient’s individual needs. (shrink)

The centrality of trust in traditional doctor–patient relationships has been criticized as inordinately paternalistic, yet in today's discussions about medical ethics—mostly in response to disruptive innovation in healthcare—trust reappears as an asset to enable empowerment. To turn away from paternalistic trust‐based doctor–patient relationships and to arrive at an empowerment‐based medical model, increasing reference is made to the importance of nurturing trust in technologies that are supposed to bring that empowerment. In this article we stimulate discussion (...) about why the move towards patient empowerment may not be able to keep clear of the criticism of trust in traditional patient–doctor relationships. First, we explore how such a shift in trust dynamics might corrode patient empowerment in the name of patient empowerment. Second, we examine how a translocation of trust may at best push the “trust issue” elsewhere and at worst make it harder to evaluate trustworthiness. (shrink)

The patient empowerment process that took place in France during the 20th century can, artificially, be divided into three major periods, marked by the principles of solidarity, agency, and authority. This tripartition makes it possible to better understand the challenges of this movement and to see how the advent of health democracy, which took place at the beginning of the 21st century, led, through its depoliticization of autonomy issues, to the dismissal of patients towards a form of subalternity. (...) Paradoxically, the new figures of the patient, the expert, or the partner bear witness to this subalternity. (shrink)

Background: Healthcare providers who are accountable for patient care safety and quality but who are not empowered to actualize them experience moral distress. Interventions to mitigate moral distress in the healthcare organization are needed. Objective: To evaluate the effect on moral distress and clinician empowerment of an established, health-system-wide intervention, Moral Distress Consultation. Methods: A quasi-experimental, mixed methods study using pre/post surveys, structured interviews, and evaluation of consult themes was used. Consults were requested by staff when moral distress (...) was present. The purpose of consultation is to identify the causes of moral distress, barriers to action, and strategies to improve the situation. Intervention participants were those who attended a moral distress consult. Control participants were staff surveyed prior to the consult. Interviews were conducted after the consult with willing participants and unit managers. Moral distress was measured using the Moral Distress Thermometer. Empowerment was measured using the Global Empowerment Scale. Results: Twenty-one consults were conducted. Analysis included 116 intervention and 30 control surveys, and 11 interviews. A small but significant decrease was found among intervention participants, especially intensive care staff. Empowerment was unchanged. Interview themes support the consult service as an effective mode for open discussion of difficult circumstances and an important aspect of a healthy work environment. Conclusions: Moral distress consultation is an organization-wide mechanism for addressing moral distress. Consultation does not resolve moral distress but helps staff identify strategies to improve the situation. Further studies including follow up may elucidate consultation effectiveness. (shrink)

Walter and Ross rightfully argue that healthcare providers need to employ a less authoritarian, more empowering approach if they want to support patients’ behavioral changes. They show how motivational interviewing (MI), informed by self-determination theory, engages patients and thus may inspire enduring changes. They ground these interventions in an important, new model of relational autonomy, emphasizing the patient’s self-respect and self-cohesion as well as self-determination, and they show how patient–provider interactions influence these three aspects of autonomy. It may (...) be surprising then, that in the first part of this essay, I argue that it is problematic for them to ground their empowerment model in the .. (shrink)

During the period of conflict that led to the dissolution of the former Yugoslavia, the Serbian healthcare system suffered greatly; as a result, relationships between physicians and their patients reached an all-time low. After cessation of the various wars, a group of medical students attempted to assess the state of the patient–physician relationship in Serbia. Their study showed a relationship characterised by very meek patients and rather arrogant physicians. Empowered by their engagement, the medical students constructed a set of (...) standards for achieving a proper patient–physician relationship; physicians should be capable of hearing and understanding patients, with the result that the ensuing empowerment can enable patients and physicians to create a tool for changing the relationship between both parties. (shrink)

Digital Health Tools (DHTs), also known as patient self-surveilling strategies, have increasingly been promoted by health-care policy makers as technologies that have the capacity to transform patients’ lives. At the heart of the debate is the notion of empowerment. In this paper, we argue that what is required is not so much empowerment but rather a shift to enabling DHTs as digital companions. This will enable policy makers and health-care system designers to provide a more balanced view—one (...) that capitalises on the benefits of DHTs, while minimising the risks of potential harms. -/- . (shrink)

Background Research has shown that moral distress negatively impacts nurses, patients, and organizations; however, several scholars have argued that it can be an opportunity for positive outcomes. Thus, factors that may mitigate moral distress and catalyze positive change need to be explored. Research aim The purpose of this study was to explore the relationships among structural and psychological empowerment, psychiatric staff nurses’ experience of moral distress, and strategies for coping with moral distress. Research design A descriptive cross-sectional correlational study. (...) Participants and research context A total of 180 registered nurses working in psychiatric hospitals in Japan participated. This study examined relationships among key variables using four questionnaires to assess structural and psychological empowerment, moral distress for psychiatric nurses, and coping strategies. Statistical analyses of correlations and multiple regressions were conducted. Ethical considerations The study was approved by the institutional review board at the author’s affiliated university. Findings Psychiatric nurses perceived moderate levels of structural and psychological empowerment, and their experiences of moral distress were related to low staffing. Structural empowerment was negatively related to the frequency of moral distress but not the intensity. Contrary to expectations, psychological empowerment was not found to mitigate nurses’ moral distress. Multivariate regression analyses revealed that the significant predictors of moral distress were the leaving issues unresolved coping style, the problem-solving coping style, and a lack of formal power, which explained 35% and 22% of the variance in the frequency and intensity of moral distress, respectively. Conclusions In psychiatric hospitals in Japan, nurses experience moral distress that compromises the quality of care they provide. Therefore, formal support for nurses in voicing and investigating their moral concerns is required to bestow formal power by establishing a ward culture that includes shared governance. (shrink)

ABSTRACT Patient self‐management (SM) of chronic disease is an evolving movement, with some forms documented as yielding important outcomes. Potential benefits from proper preparation and maintenance of patient SM skills include quality care tailored to the patient's preferences and life goals, and increase in skills in problem solving, confidence and success, generalizable to other parts of the patient's life. Four central ethical issues can be identified: 1) insufficient patient/family access to preparation that will optimize their (...) competence to SM without harm to themselves, 2) lack of acknowledgement that an ethos of patient empowerment can mask transfer of responsibility beyond patient/family competency to handle that responsibility, 3) prevailing assumptions that preparation for SM cannot result in harm and that its main purpose is to deliver physician instructions, and 4) lack of standards for patient selection, which has the potential to exclude individuals who could benefit from learning to SM. Technology assessment offers one framework through which to examine available data about efficacy of patient SM and to answer the central question of what conditions must be put in place to optimize the benefits of SM while assuring that potential harms are controlled. (shrink)

ZusammenfassungDie Einführung der Fallpauschalen-basierten Finanzierung der Krankenhäuser ist ein erneuter Versuch, die Kosten in diesem Bereich zu reduzieren. Folge dieses Anreizsystems ist u. a. eine deutliche Verkürzung der Verweildauer der Patienten im Krankenhaus. Das wiederum führt zu durchschnittlich kränkeren Patienten und einer deutlichen Arbeitsverdichtung für alle. Vor diesem Hintergrund wird anhand empirischer Daten die Situation der Pflege mit drastischen Einschränkungen beschrieben und es werden Hypothesen zur Begründung aufgestellt. Daran knüpft sich die Frage, welche Art der Versorgung die Patienten mit kürzer (...) werdender Verweildauer und immer häufiger auftretenden chronischen Krankheiten neben der ärztlichen Therapie benötigen. Dies baut auf der Theorie der Aufgaben zur Krankheitsbewältigung auf, die Patienten befähigen sollen, mit Krankheiten in ihrem eigenen Sinne umgehen zu können. Die Kernaufgaben der Pflege werden hier mit dem Ziel der forcierten Förderung der Entlassungsfähigkeit verbunden mit einem Empowerment der Patienten verknüpft. Organisatorisch bietet sich als Lösung der Einsatz von Primary Nurses an. Die derzeitige Situation in der Pflege widerspricht den genannten Sollvorstellungen diametral. Im Sinne einer sicheren und effektiven Versorgung von Patienten im Krankenhaus muss der Pflegedienst inhaltlich völlig anders aufgestellt und mit weiteren Kompetenzen ausgestattet werden. (shrink)

Efforts to counteract abuse in health care, defined as patient-experienced abuse, have mainly focused on interventions among caregivers. This study is the first to test an online intervention focusing on how patients can counteract such abuse. The intervention aimed at increasing patients’ intention and perceived ability to act in future situations where they risk experiencing abuse.

KNUTSEN IR, TERRAGNI L and FOSS C. Nursing Inquiry 2011; 18: 348–358 Morbidly obese patients and lifestyle change: constructing ethical selvesIn contemporary societies, bodily size is an important part of individuals’ self‐representation. As the number of persons clinically diagnosed as morbidly obese increases, programmes are developed to make people reduce weight by changing their lifestyle, and for some, by bariatric surgery. This article presents findings from interviews with 12 participants undergoing a prerequisite course prior to bariatric surgery that is intended (...) both as a preparation for further (surgical) treatment and as a tool to empower individuals regarding lifestyle changes. In this study, we investigate how power operates by looking at how the participants position themselves throughout the course. Findings reveal how participants construct their ability to act in line with norms of lifestyle change. They do this by positioning themselves as both included group members and as ‘morally’ acceptable individuals. Despite some resistance, the participants tend to glide into the role of ‘good patients’ acting in compliance with the aims of the course in their hope and striving for new positions as ‘normal‐sized’. The intention in the course is to empower individuals towards lifestyle changes. The findings provide a basis to question whether these kinds of courses create new forms of compliance and dependency. (shrink)

The idea of patient advocacy as a function of clinical ethics consultation (CEC) has been debated in the bioethics literature. In particular, opinion is divided as to whether patient advocacy inherently is in conflict with the other duties of the ethics consultant, especially that of impartial mediator. The debate is complicated, however, because patient advocacy is not uniformly conceptualized. This article examines two literatures that are crucial to understanding patient advocacy in the context of bioethical deliberations: (...) the CEC literature and the literature on advocacy in the social work profession. A review of this literature identifies four distinct approaches to patient advocacy that are relevant to CEC: (1) the best interest approach, (2) the patient rights approach, (3) the representational approach, and (4) the empowerment approach. After providing a clearer understanding of the varied meanings of patient advocacy in the context of CEC, we assert that patient advocacy is not inherently inconsistent with the function of the ethics consultant and the CEC process. Finally, we provide a framework to help consultants determine if they should adopt an advocacy role. (shrink)

Background:Moral distress occurs when constraints prevent healthcare providers from acting in accordance with their core moral values to provide good patient care. The experience of moral distress in nurses might be magnified during the current Covid-19 pandemic.Objective:To explore causes of moral distress in nurses caring for Covid-19 patients and identify strategies to enhance their moral resiliency.Research design:A qualitative study using a qualitative content analysis of focus group discussions and in-depth interviews. We purposively sampled 31 nurses caring for Covid-19 patients (...) in the acute care units within large academic medical systems in Maryland and New York City during April to June 2020.Ethical considerations:We obtained approval from the Institutional Review Board at the University of Maryland, Baltimore.Results:We identified themes and sub-themes representative of major causes of moral distress in nurses caring Covid-19 patients. These included (a) lack of knowledge and uncertainty regarding how to treat a new illness; (b) being overwhelmed by the depth and breadth of the Covid-19 illness; (c) fear of exposure to the virus leading to suboptimal care; (d) adopting a team model of nursing care that caused intra-professional tensions and miscommunications; (e) policies to reduce viral transmission (visitation policy and PPE policy) that prevented nurses to assume their caring role; (f) practicing within crisis standards of care; and (g) dealing with medical resource scarcity. Participants discussed their coping mechanisms and suggested future strategies.Discussion/Conclusion:Our study affirms new causes of moral distress related to the Covid-19 pandemic. Institutions need to develop a supportive ethical climate that can restore nurses’ moral resiliency. Such a climate should include non-hierarchical interdisciplinary spaces where all providers can meet together as moral peers to discuss their experiences. (shrink)

Power is an inescapable aspect of all socialrelationships, and inherently is neither goodnor evil. Doctors need power to fulfil theirprofessional obligations to multipleconstituencies including patients, thecommunity and themselves. Patients need powerto formulate their values, articulate andachieve health needs, and fulfil theirresponsibilities. However, both parties canuse or misuse power. The ethical effectivenessof a health system is maximised by empoweringdoctors and patients to develop `adult-adult'rather than `adult-child' relationships thatrespect and enable autonomy, accountability,fidelity and humanity. Even in adult-adultrelationships, conflicts and complexitiesarise. Lack of (...) concordance between doctors andpatients can encourage paternalism but may bebest resolved through negotiated care. Afurther area of conflict involves the `doubleagency' of doctors for both patients and thecommunity. Empowerment of all players is notalways possible but is most likely where eachparty considers and acknowledges power issues. (shrink)

The long-standing tradition of phenomenological psychopathology has been historically concerned with the nature of mental disorders, with a special focus on their basic experiential core. In the same way, much of the recent phenomenologically-inspired work in psychopathology consists in providing precise and refined tools for diagnosis, classification, and nosology of mental disorders. What is striking, however, is the lack of therapeutic proposals in this tradition. Although a number of phenomenological approaches refer positively to psychotherapeutic practices, psychopharmacological intervention has been mostly (...) neglected as a relevant field of attention. This work aims to fill this gap. We maintain that the convergence of phenomenological psychopathology and psychopharmacology exhibit a rich potential for mutual enlightenment, which unfolds into a more adequate psychopharmacological practice. Initially, after discussing Joanna Moncrieff’s drug-centered model of drug action we review some of the major findings in phenomenological literature regarding psychopharmacological treatment. Next, we suggest that Moncrieff’s drug-centered model can be seen as an important tool for improving clinical decision-making, by elucidating its inherent epistemic advantage when compared to mainstream models of drug action. As a result, the drug-centered model proves to be also patient-centered, by focusing on experiential alterations and helping to improve treatment outcomes. (shrink)

Digital communication between a patient and their clinician offers the potential for improved patient care, particularly for young people with long term conditions who are at risk of service disengagement. However, its use raises a number of ethical questions which have not been explored in empirical studies. The objective of this study was to examine, from the patient and clinician perspective, the ethical implications of the use of digital clinical communication in the context of young people living (...) with long-term conditions. A total of 129 semi-structured interviews, 59 with young people and 70 with healthcare professionals, from 20 United Kingdom -based specialist clinics were conducted as part of the LYNC study. Transcripts from five sites were read by a core team to identify explicit and implicit ethical issues and develop descriptive ethical codes. Our subsequent thematic analysis was developed iteratively with reference to professional and ethical norms. Clinician participants saw digital clinical communication as potentially increasing patient empowerment and autonomy; improving trust between patient and healthcare professional; and reducing harm because of rapid access to clinical advice. However, they also described ethical challenges, including: difficulty with defining and maintaining boundaries of confidentiality; uncertainty regarding the level of consent required; and blurring of the limits of a clinician’s duty of care when unlimited access is possible. Paradoxically, the use of digital clinical communication can create dependence rather than promote autonomy in some patients. Patient participants varied in their understanding of, and concern about, confidentiality in the context of digital communication. An overarching theme emerging from the data was a shifting of the boundaries of the patient-clinician relationship and the professional duty of care in the context of use of clinical digital communication. The ethical implications of clinical digital communication are complex and go beyond concerns about confidentiality and consent. Any development of this form of communication should consider its impact on the patient-clinician-relationship, and include appropriate safeguards to ensure that professional ethical obligations are adhered to. (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)

Efforts to improve patients’ understanding of their own medical treatments or research in which they are involved are progressing, especially with regard to informed consent procedures. We aimed to design a multisource informed consent procedure that is easily adaptable to both clinical and research applications, and to evaluate its effectiveness in terms of understanding and awareness, even in less educated patients.

Tōjisha research is a methodology intended to help psychiatric patients through dialogue. It was introduced in the context of community care in Bethel House (Hokkaido, Japan) in the early 2000s and later spread to other parts of Japan as well as abroad because of its originality and apparent therapeutic success. It offers patients a framework to investigate their own problems, symptoms, and delusions and to build a discourse around them. In this paper, I present a short account of tōjisha research (...) and I put it in the context of current debates over the benefits and drawbacks of narrative medicine. I argue that there is an original conception of the self and of empowerment of patients in tōjisha research compared to other models of narrative medicine. Finally, I mobilize these original aspects to address some rebuttals of narrative medicine. (shrink)