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)

Ce texte reprend une conférence faite par H.-J. Wirth à Washington (États-Unis) en octobre 2005. Ces réflexions pourraient facilement se transposer sur la relation entre le thérapeute et le patient ; de la même façon, elle se caractérise par des positions de pouvoir différentes. Jurg Willy, se référant à Dicks et à son concept de collusion dans le cadre de la thérapie de couple, en a élargi la formulation dans la mesure où il a placé les attentes inconscientes, réciproques et (...) le jeu inconscient des deux partenaires, au centre de sa réflexion. (shrink)

_The Concept of Analytic Contact_ presents practitioners with new ways to assist the often severely disturbed patients that come to see them in both private and institutional settings. In this book Robert Waska outlines the use of psychoanalysis as a method of engagement that can be utilised with or without the addition of multiple weekly visits and the analytic couch. The chapters in this book follow a wide spectrum of cases and clinical situations where hard to reach patients are provided (...) with the best opportunity for health and healing through the establishment of analytic contact. Divided into four parts, this book covers: the concept of analytic contact caution and reluctance concerning psychological engagement drugs, mutilation, and psychic fragmentation clinical reality, psychoanalysis and the utility of analytic contact. Analytic contact is demonstrated to be a valuable clinical approach to working analytically with a complicated group of patients in a successful manner. It will be of great interest to all practitioners in the field of psychoanalysis and psychotherapy. (shrink)

Influential holistic analyses of patient perspectives assume that the concepts that patients associate with medical terms are formed by their total social and cultural contexts. Holistic analyses presuppose conceptual role semantics in the sense that they imply that a medical term must have the same role for a nurse and a patient in order for them to associate the same concept with the term. In recent philosophy of mind, social externalism has emerged as a non‐holistic alternative to conceptual role theories. (...) According to social externalism, a nurse and a patient express the same concept by a term if they both have a minimal or better understanding of the term. Three arguments in favour of social externalism are presented in connection with nurse–patient interaction. The first concerns successful communication, the second focuses on belief reports made by patients and the third centres on the need for including medical terms in medical discourse. Finally, the practical implications of the arguments are clarified. The most important of these is that, in cases of misunderstanding, a nurse should not conform to a patient's idiosyncratic understanding, but instead correct the mistaken applications of the term in question. (shrink)

The importance of patients taking an active role in their healthcare is recognized internationally, to improve safety and effectiveness in practice. There is still, however, some ambiguity about the conceptualization of that patient role; it is referred to interchangeably in the literature as engagement, involvement, and participation. The aim of this discussion paper is to examine and conceptualize the concepts of patient engagement, involvement, and participation within healthcare, particularly nursing. The concepts were found to have semantic differences and similarities, although, (...) from a nursing perspective, they can be summoned to illustrate the establishment of a mutual partnership between a patient and a nurse. The individualization of such processes requires the joint effort of engagement, involvement, or participation, represented by interactive actions of both the patient (asking questions, telling/speaking up, knowledge acquisition, learning, and decision‐making) and the nurse (recognizing, responding, information sharing, teaching, and collaborating). Suggesting that the concepts can be used interchangeably comes with some caution, requiring that nurses embrace patients playing a role in their health and healthcare. Further research and practice development should focus on how patients and nurses receive and respond to each other to establish patient engagement, involvement, and participation. (shrink)

In the principles of informed consent we state that each person ought to be free to make his or her own decisions regarding his or her life and health — provided that he or she is mentally competent to do so. Here, the concept of competence plays a crucial role. Where one is competent our moral goal is to promote his or her freedom; if he or she is not, our priority must be to protect and help him or her. (...) In this paper I discuss three different notions of patient competence. The first, rational competence, concerns the basic ability to make a decision. The second, performance competence, concerns one's ability to make decisions and perform skills in ways that measure up to certain external standards. The third, reflective competence, concerns one's ability to identify and critically to scrutinize one's own values — one's ability, that is, to formulate and to evaluate one's own internal standards of decision and action. This richer analysis of the concept of competence enables us to formulate more precisely the moral difficulties we face when competence is impaired. (shrink)

“Bodily autonomy” has received significant attention in bioethics, medical ethics, and medical law in terms of the general inviolability of a patient’s bodily sovereignty and the rights of patients to make choices (e.g., reproductive choices) that concern their own body. However, the role of the body in terms of how it can or does contribute to a patient’s capacity for, or exercises of their autonomy in clinical decision-making situations has not been explicitly addressed. The approach to autonomy in this paper (...) is aligned with traditional theories that conceive autonomy in terms of an individual’s capacities for, and exercises of rational reflection. However, at the same time, this paper extends these accounts by arguing that autonomy is, in part, embodied. Specifically, by drawing on phenomenological conceptions of the experience of autonomy, we argue that, in principle, the body is a necessary component of the capacity for autonomy. Secondly, through the presentation of two different cases, we highlight ways in which a patient’s body can contribute to the autonomy of treatment choices. Ultimately, we hope to encourage others to explore additional conditions under which a concept of embodied autonomy should be employed in medical decision making, how its underlying principles might be operationalised in clinical situations, and its consequences for approaches to patient autonomy in healthcare practice, policy, and law. (shrink)

Hilary Putnam’s influential analysis of the ‘division of linguistic labour’ has a striking application in the area of doctor–patient interaction: patients typically think of themselves as consumers of technical medical terms in the sense that they normally defer to health professionals’ explanations of meaning. It is at the same time well documented that patients tend to think they are entitled to understand lay health terms like ‘sickness’ and ‘illness’ in ways that do not necessarily correspond to health professionals’ understanding. Drawing (...) on recent philosophical theories of concept possession, the article argues that this disparity between medical and lay vocabulary implies that it is, in an important range of cases, easier for doctors to create a communicative platform of shared concepts by using and explaining special medical expressions than by using common lay expressions. This conclusion is contrasted with the view that doctors and patients typically understand each other when they use lay vocabulary. Obviously, use of expressions like ‘sickness’ or ‘illness’ does not necessarily lead to poor communication, but it is important that doctors have an awareness of how patients interpret such terms. (shrink)

In May 2013 a new Assisted Dying Bill was tabled in the House of Lords and is currently scheduled for a second reading in May 2014. The Bill was informed by the report of the Commission on Assisted Dying which itself was informed by evidence presented by invited experts.

Due to new developments in prenatal testing and therapy the fetus is increasingly visible, examinable and treatable in prenatal care. Accordingly, physicians tend to perceive the fetus as a patient and understand themselves as having certain professional duties towards it. However, it is far from clear what it means to speak of a patient in this connection. This volume explores the usefulness and limitations of the concept of ¿fetal patient¿ against the background of the recent seminal developments in prenatal or (...) fetal medicine. It does so from an interdisciplinary and international perspective. Featuring internationally recognized experts in the field, the book discusses the normative implications of the concept of ¿fetal patient¿ from a philosophical-theoretical as well as from a legal perspective. This includes its implications for the autonomy of the pregnant woman as well as its consequences for physician-patient-interactions in prenatal medicine. (shrink)

Hilary Putnam's influential analysis of the 'division of linguistic labour' has a striking application in the area of doctor-patient interaction: patients typically think of themselves as consumers of technical medical terms in the sense that they normally defer to health professionals' explanations of meaning. It is at the same time well documented that patients tend to think they are entitled to understand lay health terms like 'sickness' and 'illness' in ways that do not necessarily correspond to health professionals' understanding. Drawing (...) on recent philosophical theories of concept possession, the article argues that this disparity between medical and lay vocabulary implies that it is, in an important range of cases, easier for doctors to create a communicative platform of shared concepts by using and explaining special medical expressions than by using common lay expressions. This conclusion is contrasted with the view that doctors and patients typically understand each other when they use lay vocabulary. Obviously, use of expressions like 'sickness' or 'illness' does not necessarily lead to poor communication, but it is important that doctors have an awareness of how patients interpret such terms. (shrink)

Managed care employs two business tools of managed practice that raise important ethical issues: paying physicians in ways that impose conflicts of interest on them; and regulating physicians' clinical judgment, decision making, and behavior. The literature on the clinical ethics of managed care has begun to develop rapidly in the past several years. Professional organizations of physicians have made important contributions to this literature. The statements on ethical issues in managed care of four such organizations are considered here, the American (...) Medical Association, the American College of Physicians, the American College of Obstetricians and Gynecologists, and the American Academy of Pediatrics. Three themes common to these statements are identified and critically assessed: the primacy of meeting the medical needs of each individual patient; disclosure of conflicts of interest in how physicians are paid; and opposition to gag orders. The paper concludes with an argument for a basic concept in the clinical ethics of managed care: physicians and institutions as economically disciplined moral co-fiduciaries of populations of patients. (shrink)

Purpose – The purpose of this paper is to analyse the current status of ownership of patient information from a Lockean perspective and then present Datenherrschaft as a new model for patient ownership of patient information. Design/methodology/approach – This paper is theoretical in approach. It is based on arguments derived from Locke’s Two Treatises of Government. Legal examples of the current situation are derived from Finnish, UK and Swedish legislation. Findings – Current legislation concerning patient information is not clearly formulated (...) and so recognising a new right on the part of the patient, Datenherrschaft, would be an ethically justifiable way of remedying the issue. Research limitations/implications – The legal analysis was limited to Finland, the UK and Sweden, and so other legislation should be looked at in future research. Datenherrschaft is used as an example of an ethically justified way of regulating patient information ownership and should be analysed further. Originality/value – Patient information ownership is an issue that is not unambiguously solved in many countries, nor has it, in our view, been ethically justified. The potential solution presented in this paper is clear and has strong ethical justifications. (shrink)

PurposeIn this paper, patient information is approached from a Heideggerian perspective with the intention to gather an understanding about the personal nature of the information. The purpose of this paper is to analyse the ownership of patient information and then present Datenherrschaft as a suitable model for patient ownership of patient information.Design/methodology/approachThis paper is theoretical in approach. It is based on arguments derived from Heidegger’s work in the Being and Time.FindingsBased on this Heideggerian approcah, a proposal for using the special (...) definition of ownership of patient information – Datenherrschaft – given to a patient is suggested. From a Heideggerian perspective, it can be stated that the patient has the strongest rights towards patient information because this information is crucial for a patient to have an understanding about their Dasein.Research limitations/implicationsDatenherrschaft is used as an example of an ethically justified way of regulating the patient information ownership and should be analysed further. Especially the practical implications of implementing Datenherrschaft need more research.Originality/valuePatient information ownership is an issue that is neither unambiguously solved in many countries, nor has it, in our view, been ethically justified. The potential solution – Datenherrschaft – presented in this paper is clear and has strong philosophical justifications. (shrink)

The nurse–patient relationship is of great significance for both nurses and patients. The purpose of this article is to gain an understanding of how the individual is constituted through a focus on the execution of the patient’s and nurse’s role in the joint relationship. The article represents a social-constructionist consideration using Kenneth Gergen’s concept of multi-being. Gergen’s notions of the self as a multi-being focuses on the individual’s relational character through former relationships and social interactions. Gergen’s concept is applied onto (...) nurses and patients as individuals to gain an understanding of the broader institutional and social context of each role and their interactions within the nurse–patient relationship. The article focuses on the nurse–patient relationship in general with regard to specific challenges in the home care setting. Various demands and experiences from a myriad of past relationships merge as potential actions for nurses and patients during the forming of a relationship. Nurses as multi-beings see themselves confronted with guidelines and legal conditions, their own as well as the patients’ expectations and the actual possible forming of a relationship in the light of daily nursing care. Patients as multi-beings experience an extended social environment that comprises the nurse–patient relationship while simultaneously having to cope with illness and increasing care dependency within their own homes. Discrepancies can be observed in the relationship with regard to the inherent human qualities, the demands of forming a relationship, and the actual relationship arising due to framework conditions. (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 nurse-patient relationship involves complex attitudes and behaviours with ethical and deontological implications. It has been linked to improvements in patient health outcomes, although there is still no consensus in the scientific literature as to the definition and characterisation of the concept. This article aim to define the concept of the nurse-patient relationship. A concept analysis was conducted using the Walker and Avant method to identify the attributes defining the nurse-patient relationship. An integrative review of the literature was conducted using (...) the PubMed, Web of Science, Scopus, and Cumulative Index to Nursing & Allied Health Literature databases. A review of the grey literature and other minor non-indexed publications on the topic was also conducted. A total of 36 articles were included in the review. A model case, a contrary case, a related case, and empirical references were produced to clarify the concept and identify its essential attributes. The concept is defined as a helping relationship involving interaction between different players. It is the basis of nursing care and is intended to meet the healthcare needs of the individual receiving this care. It is also viewed as an intervention in itself, requiring a specific training process just like any other nursing skill. The essential attributes of the relationship are empathy, presence, contact, authenticity, trust, and reciprocity. In conclusion, the nurse-patient relationship is a helping relationship established with the patient and/or their family based on interaction, communication, respect for ethical values, acceptance, and empathy in order to encourage introspection and behavioural change. Key components include communication, active listening, and respect. Bioethical values and confidentiality must also be present to ensure that the relationship is built on equality and intimacy. (shrink)

The goal of this paper is to propose a relational turn in healthcare professionalism, to improve the responsiveness of both healthcare professionals and organizations towards care of patients, but also professionals. To this end, it is important to stress the way in which difficult situations and vulnerability faced by professionals can have an impact on their performance of work. This article pursue two objectives. First, I focus on understanding and making visible shared vulnerability that arises in clinical settings from a (...) triple perspective: patient and family, health professionals, and institutions. Second, to address this challenge for professionalism, in this paper I articulate the term "relational centered-patient professionalism", which has two main axes. The relational approach means taking into account how the relationships among professionals, patients and institutions determine the constitution and evolution of those professional values. The focus on patient centered care is indispensable, because it is the ultimate goal pursued by the development of these professional values, and must always be at the center. (shrink)

There is a gap between, on the one hand, the tragic character of human action and, on the other hand, our moral and legal conceptions of responsibility that focus on individual agency and absolute guilt. Drawing on Kierkegaard’s understanding of tragic action and engaging with contemporary discourse on moral luck, poetic justice, and relational responsibility, this paper argues for a reform of our legal practices based on a less ‘harsh’ (Kierkegaard) conception of moral and legal responsibility and directed more (...) at empathic understanding based on the emotional and imaginative appreciation of personal narratives. This may help our societies and communities to better cope with unacceptable deeds by individuals who are neither criminals nor patients, to make room for praise as well as blame and punishment, and to set up practices and institutions that do not rely on a conception of responsibility that is hard to bear for all of us. (shrink)

Empirical studies have now established that many patients make clinical decisions based on models other than Anglo American model of truth-telling and patient autonomy. Some scholars also add that current medical ethics frameworks and recent proposals for enhancing communication in health professional-patient relationship have not adequately accommodated these models. In certain clinical contexts where health professional and patients are motivated by significant cultural and religious values, these current frameworks cannot prevent communication breakdown, which can, in turn, jeopardize patient care, cause (...) undue distress to a patient in certain clinical contexts or negatively impact his/her relationship with the community. These empirical studies have now recommended that additional frameworks developed around other models of truth-telling; and which take very seriously significant value-differences which sometimes exist between health professional and patients, as well as patient's cultural/religious values or relational capacities, must be developed. This paper contributes towards the development of one. Specifically, this study proposes a framework for truth-telling developed around African model of truth-telling by drawing insights from the communitarian concept of ootọ́ amongst the Yoruba people of south west Nigeria. I am optimistic that if this model is incorporated into current medical ethics codes and curricula, it will significantly enhance health professional-patient communication. (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 (rights) and the clinician’s role to promote the well-being of the patient (duties). In this paper we argue that (1) the use of manipulative strategies, albeit considered beneficent, defeats the purpose of patient education and therefore should be rejected; and (2) 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)

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)

The puzzling case of the broken arm -- Hernias, diets, and drugs -- Why physicians cannot know what will benefit patients -- Sacrificing patient benefit to protect patient rights -- Societal interests and duties to others -- The new, limited, twenty-first-century role for physicians as patient assistants -- Abandoning modern medical concepts: doctor's "orders" and hospital "discharge" -- Medicine can't "indicate": so why do we talk that way? --"Treatments of choice" and "medical necessity": who is fooling whom? -- Abandoning informed (...) consent -- Why physicians get it wrong and the alternatives to consent: patient choice and deep value pairing -- The end of prescribing: why prescription writing is irrational -- The alternatives to prescribing -- Are fat people overweight? -- Beyond prettiness: death, disease, and being fat -- Universal but varied health insurance: only separate is equal -- Health insurance: the case for multiple lists -- Why hospice care should not be a part of ideal health care I: the history of the hospice -- Why hospice care should not be a part of ideal health care II: hospice in a postmodern era -- Randomized human experimentation: the modern dilemma -- Randomized human experimentation: a proposal for the new medicine -- Clinical practice guidelines and why they are wrong -- Outcomes research and how values sneak into finding of fact -- The consensus of medical experts and why it is wrong so often. (shrink)

Kant's concept of autonomy and the Kantian notion of autonomy are often conflated in bioethics. However, the contemporary Kantian notion has very little at all to do with Kant's original. In order to further bioethics discourse on autonomy, I critically distinguish the contemporary Kantian notion from Kant's original concept of moral autonomy. I then evaluate the practical relevance of both concepts of autonomy for use in bioethics. I argue that it is not appropriate to appeal to either concept toward assessing (...) which patients we ought to respect as autonomous. Finally, I sketch criteria for what I take to be a more promising concept of autonomy for patients. (shrink)

CITATION: Ewuoso, C., Hall, S. & Dierickx, K. 2017. How do healthcare professionals manage ethical challenges regarding information in healthcare professional/patient clinical interactions? a review of concept- or argument-based articles and case analyses. South African Journal of Bioethics and Law, 10:75-82, doi:10.7196/SAJBL.2017.v10i2.610.

BACKGROUND: Patient autonomy has gradually replaced physician paternalism as an ethical ideal. However, in a medical context, the principle of individual autonomy has different meanings. More knowledge is needed about what is and should be an appropriate understanding of the concept of patient autonomy in clinical practice. AIM: To challenge the traditional concept of patient autonomy by applying a discourse analysis to the issue. METHOD: A qualitative case study approach with material from one consultation. The discourse is interpreted according to (...) pragmatic and text-linguistic principles and provides the basis of a theoretical discussion of different concepts of patient autonomy. RESULTS: The consultation transcript illustrates how the patient's wishes can be respected in real life. The patient, her husband and the doctor are all involved in the discourse dynamics, governed by the subject matter, namely her mental illness. CONCLUSION: We suggest a dynamic and dialogue-based conception of autonomy as adequate for clinical purposes. These perspectives, based on mutual understanding, take communication between patient and doctor as their starting point. According to this approach, autonomy requires a genuine dialogue, an interpersonal mode of being which we choose to call "authentic interaction". (shrink)

The principle of patient autonomy dominates the contemporary debate over medical ethics. In this examination of the doctor-patient relationship, physician and philosopher Alfred Tauber argues that the idea of patient autonomy -- which was inspired by other rights-based movements of the 1960s -- was an extrapolation from political and social philosophy that fails to ground medicine's moral philosophy. He proposes instead a reconfiguration of personal autonomy and a renewed commitment to an ethics of care. In this formulation, physician beneficence and (...) responsibility become powerful means for supporting the autonomy and dignity of patients. Beneficence, Tauber argues, should not be confused with the medical paternalism that fueled the patient rights movement. Rather, beneficence and responsibility are moral principles that not only are compatible with patient autonomy but strengthen it. Coordinating the rights of patients with the responsibilities of their caregivers will result in a more humane and robust medicine.Tauber examines the historical and philosophical competition between facts and values in medicine. He analyzes the shifting conceptions of personhood underlying the doctor-patient relationship, offers a "topology" of autonomy, from Locke and Kant to Hume and Mill, and explores both philosophical and practical strategies for reconfiguring trust and autonomy. Framing the practicalities of the clinical encounter with moral reflections, Tauber calls for an ethical medicine in which facts and values are integrated and humane values are deliberately included in the program of care. (shrink)

Bipolar affective disorder (BPAD) can be a devastating disorder for both sufferers and their relatives. In addition to the variety of distressing and severe affective symptoms, the consequences of illness onset may be equally debilitating, particularly as the illness may commonly present in early adulthood. As such, the developmental trajectory between late adolescence and early adulthood is commonly interrupted. Relationships with family, friends and partners may deteriorate, employment or studies may be interrupted, and criminal histories may be acquired. In turn, (...) such events worsen stress, reduce self-esteem, and may make the recovery process more difficult.... (shrink)

This book explores patient safety themes in developed, developing and transitioning countries. A foundation premise is the concept of 'reverse innovation' as mutual learning from the chapters challenges traditional assumptions about the construction and location of knowledge. This edited collection can be seen to facilitate global learning. This book will, hopefully, form a bridge for those countries seeking to enhance their patient safety policies. Contributors to this book challenge many supposed generalisations about human societies, including consideration of how medical care (...) is mediated within those societies and how patient safety is assured or compromised. By introducing major theories from the developing world in the book, readers are encouraged to reflect on their impact on the patient safety and the health quality debate. The development of practical patient safety policies for wider use is also encouraged. The volume presents a ground breaking perspective by exploring fundamental issues relating to patient safety through different academic disciplines. It develops the possibility of a new patient safety and health quality synthesis and discourse relevant to all concerned with patient safety and health quality in a global context. (shrink)

The clinical application of the concept of patient autonomy has centered on the ability to deliberate and make treatment decisions (decisional autonomy) to the virtual exclusion of the capacity to execute the treatment plan (executive autonomy). However, the one-component concept of autonomy is problematic in the context of multiple chronic conditions. Adherence to complex treatments commonly breaks down when patients have functional, educational, and cognitive barriers that impair their capacity to plan, sequence, and carry out tasks associated with chronic care. (...) The purpose of this article is to call for a two-component re-conceptualization of autonomy and to argue that the clinical assessment of capacity for patients with chronic conditions should be expanded to include both autonomous decision-making and autonomous execution of the agreed-upon treatment plan. We explain how the concept of autonomy should be expanded to include both decisional and executive autonomy, describe the biopsychosocial correlates of the two-component concept of autonomy, and recommend diagnostic and treatment strategies to support patients with deficits in executive autonomy. (shrink)

Phenomenology gives rise to certain ontological considerations that have far-reaching implications for standard conceptions of patient autonomy in medical ethics, and, as a result, the obligations of and to patients in clinical decision-making contexts. One such consideration is the phenomenological reduction in classical phenomenology, a core feature of which is the characterisation of our primary experiences as immediately and inherently meaningful. This paper builds on and extends the analyses of the phenomenological reduction in the works of Husserl, Heidegger, and (...) Merleau-Ponty in order to identify and explain its implications for our current understanding of the principle of respect for patient autonomy and the norms of clinical decision making. (shrink)

The “patient perspective” serves as an analytical tool to present patients as knowing subjects in research, rather than as objects known by medicine. This paper analyses problems encountered with the concept of the patient perspective as applied to long-term mental health care. One problem is that “having a perspective” requires a perception of oneself as an individual and the ability to represent one’s individual situation in language; this excludes from research patients who do not express themselves verbally. Another problem is (...) that the idea of “talk” as a representation of the world ignores the fact that talk is also performative in the world: it requires, at least, the ability to deal with an interview situation. To think up alternative ways of including patients as subjects in research, I develop an approach that takes this performativity as a starting point. Analysing practical situations and activities, I argue that patients enact appreciations, making known what they like or dislike by verbal or non-verbal means in a given material environment, in situations that are co-produced by others. Thus, subjectivity is linked to situations and interactions, rather than just to individual characteristics; to “patient positions,” rather than “patient perspectives.”. (shrink)

An increasing number of older patients have to decide on a treatment plan for advanced chronic kidney disease, involving dialysis or conservative care. Shared decision-making is recommended as the model for decision-making in such preference-sensitive decisions. The aim of SDM is to come to decisions that are consistent with the patient’s values and preferences and made by the patient and healthcare professional working together. In clinical practice, however, SDM appears to be not yet routine and needs further implementation. A shift (...) from a biomedical to a person-centered conception might help to make the process more shared. Shared should, therefore, be interpreted as two persons bringing two perspectives to the table, that both need to be explored during the decision-making process. Starting from the patient’s perspective will enable to determine the mutual goals of care first and, subsequently, determine the best way for achieving those goals. To perform such SDM, the healthcare professional needs to become a skilled companion, being part of the patient’s relational context, and start asking the right questions about what matters to the patient as person. In this article, we describe the need for a person-centered conception of SDM for the setting of older patients with advanced CKD. (shrink)

Various kinds of user and patient involvement are spreading in healthcare in most Western countries. The purpose of this study is to critically assess the actual conditions for patients’ involvement in healthcare practice in Greenland and to point to possibilities for development. Patients’ perspectives on their own conduct of everyday life with illness and their possibilities for participation when hospitalized are examined in relation to the conditions in a hospital setting dominated by biomedical practice. On a theoretical level, it is (...) argued that the concept of ‘participation’ is preferable to the concept ‘involvement’ in healthcare. The study shows that there are several interconnected areas for development: the structural frames of hospital practice, including professionals’ possibilities for handling patient participation, and the agency of the patients conducting their everyday lives when hospitalized. Consequences of the biomedical hegemony are discussed in relation to WHO ́s broader approach to disease, illness and health and the still existing postcolonial traces of power and hierarchy. Finally it is argued that patient participation during hospitalization will promote the patients ́ conduct of everyday life, the cultural knowledge of the professionals, and the democratization of the healthcare sector. Such changes might be connected to a more encompassing democratic societal development – in Greenland as well as globally. (shrink)

Patient-centred communication is widely regarded as a best practice in contemporary medical care, both in terms of maximising health outcomes and respecting persons. However, not all patients communicate in ways that are easily understood by clinicians and other healthcare professionals. This is especially so for patients with non-speaking intellectual disabilities. We argue that assumptions about intellectual disability—including those in diagnostic criteria, providers’ implicit attitudes and master narratives of disability—negatively affect communicative approaches towards intellectually disabled patients.Non-speakingintellectually disabled patients may also be (...) taken to lack decision-making capacity and resultingly, may be given very little role in determining their care. But, given evidence of the heterogeneous communicative practices available to non-speaking patients, efforts should be made to extend patient-centred communication to them. We offer four suggestions for doing so: (1) treating those with non-speaking intellectual disabilities as potential communicators; (2) lengthening appointment times to develop relationships necessary for communication; (3) disentangling capacity from communication in concept and in practice; and (4) recognising the bidirectional connection between supported decision-making and patient-centred communication. (shrink)

How patients and nurses experience the acute care psychiatric environment The concept of the therapeutic milieu was developed when patients’ hospitalizations were long, medications were few, and one‐to‐one nurse–patient interactions were the norm. However, it is not clear how the notion of ‘therapeutic milieu’ is experienced in American acute psychiatric environments today. This phenomenological study explored the experience of patients and nurses in an acute care psychiatric unit in the USA, by asking them, ‘What stands out to you about this (...) psychiatric hospital environment?’ Three figural themes emerged, contextualized by time, which was a source of stress to both groups: for patients there was boredom, and for nurses, pressure and chaos. Although they shared some themes, nurses and patients experienced them differently. For instance, nurses felt caged‐in by the Plexiglas‐enclosed nursing station, and patients felt caged‐in by the locked doors of the unit. The findings from this US study do not support the existence of the therapeutic milieu as described in the literature. Furthermore, although the nurse–patient relationship was yearned for by nurses, it was nearly absent from patients’ descriptions. The caring experienced by patients was mainly derived from interactions with other patients. (shrink)

Governments are increasingly inviting patient organizations to participate in healthcare policymaking. By inviting POs that claim to represent patients, representation comes into being. However, little is known about the circumstances under which governments accept POs as patient representatives. Based on the analysis of relevant legislation, this article investigates the criteria that self-help organizations, a special type of PO, must fulfil in order to be accepted as patient representatives by governments in Austria and Germany. Thereby, it aims to contribute to the (...) discussion on the role of governments in steering SHOs. There are different degrees of regulation. Governments in both countries not only formulate explicit criteria for SHOs with respect to patient representation but also guide SHOs representing patients through implicit criteria for associations. We discuss the findings against concepts of responsiveness, authorization, and accountability. Our findings indicate that governmental steering is not negative per se as indicated by previous research but—depending on legislative criteria—can promote transparency and democratic quality in patient representation. (shrink)

The fundamental standard of health care is health. Theories of health affect how we conceive of good health, ill health, Good patients, and Good providers. They also profoundly affect how we go about attempting to solve health problems once we’ve identified them. In this chapter, I argue that the way health care providers, bioethicists, and public health experts approach health relies on ideal theory despite the heavy knowledge that this world will never be ideal. We need a conception of health (...) that accounts for this. I outline the weakness of ideal theory in general and with respect to theories of health, and argue in favor of a nonideal approach to health that is rooted in intersubjectivity, empiricism, inclusivity, contextual specificity, and reflexivity which are not entrusted to any one set of knowers. Throughout, I use the example of how we approach fatness, and medicalize obesity, to illustrate where we’ve gone wrong and to chart a path toward how we can go right. (shrink)

As Next Generation Sequencing technologies are increasingly implemented in biomedical research and care, the number of study participants and patients who ask for release of their genomic raw data is set to increase. This raises the question whether research participants and patients have a legal and moral right to receive their genomic raw data and, if so, how this right should be implemented into practice. In a first step we clarify some central concepts such as “raw data”; in a second (...) step we sketch the international legal framework. The third step provides an extensive ethical analysis which comprehends two parts: an evaluation of whether there is a prima facie moral right to receive one’s raw data, and a contextualization and discussion of the right in light of potentially conflicting interests and rights of the data subject herself and third parties; in a last fourth step we emphasize the main practical consequences of the ethical analyses and propose recommendations for the release of raw data. In several legislations like the new European General Data Protection Regulation, patients do in principle have the right to receive their raw data. However, the procedural implementation of this right and whether it involves genetic counselling is at the discretion of the Member States. Even more questions remain with respect to the research context. The ethical analysis suggests that patients and research subjects have a moral right to receive their genomic raw data and addresses aspects which are also of relevance for the legal discussion such as the costs of release of raw data and its impact on academic freedom. Taking into account the specific nature and implications of genomic raw data and the contexts of research and health care, several concerns and potentially conflicting interests of the data subjects themselves and involved researchers, physicians, biomedical institutions and relatives arise. Instead of using them to argue in favor of restrictions of the data subjects’ legal and moral right to genomic raw data, the concerns should be addressed through provision of information and other measures. To this end, we propose relevant recommendations. (shrink)

This article explores the patient experience of medically unexplained symptoms (MUS) from an existentialist standpoint. Drawing on the work of Jean-Paul Sartre and Simone de Beauvoir, I explore their concepts of existential situation, existential project, authenticity, and praxis. I then analyze the situation of MUS patients in the current cultural and institutional context, elucidating that a lack of explanation for their symptoms puts MUS patients in an existential bind. I illustrate the effects of the experience of MUS on patients’ existential (...) projects. Last, I develop an ethical response in the existentialist tradition from the perspective of patients, providers, and society at large. I argue that there is a collective responsibility to foster conditions more conducive to authentic patient well-being and to improve the experience of patients with medically unexplained symptoms. (shrink)

In recent philosophy of mind a non-holistic view on concept possession, originally developed by Tyler Burge, has emerged as an alternative to holistic analyses of language mastery. The article discusses the implications of this view for analyses of communication in doctor—patient-interaction. The central question Burge's theory gives an answer to is this: to what extent must a doctor and a patient understand a medical term in the same way in order to communicate in the sense that they express the same (...) concept by the term? Many empirical studies have shown that patients do not, typically, understand medical terms in the same way as doctors they encounter. Holistic approaches therefore imply that doctors and patients seldom communicate. Burge's position, on the other hand, implies that it is sufficient that patients have a minimal understanding. In an important range of cases doctors can make sure that patients have a minimal understanding by being explicit about common dictionary definitions of the terms in question. (shrink)

Advance patient directives are various forms of anticipatory medical directives made by competent individuals for the eventuality of future incompetence. They are therefore appropriate instruments for competent patients in the early stage of Alzheimer's disease to document their self-determined will in the advanced stages of dementia. Theoretical objections have been expressed against the concept of advance patient directives (problems of authenticity and identity) which, however, cannot negate the fundamental moral authority of advance patient directives. Therefore, patients, family members, and physicians (...) should make use of the appropriate form of advance directive as part of common treatment and care planning. Advance directives, when utilized intelligently, represent appropriate instruments for shared decision-making by patient, family members and physician. They should be utilized to a greater extent, particularly for the treatment planning of demented patients. (shrink)

Virtue theory in philosophical bioethics has influenced clinical ethics with depictions of the virtuous doctor or nurse. Comparatively little has been done with the concept of the virtuous patient, however. Bioethicists should correct the asymmetry in virtue theory between physician virtues and patient virtues in a way that provides a practical theory for the new patient-centered medicine—something clinicians and administrators can take seriously.

Background In recent years, patient advocacy has emerged as a prominent concept within healthcare. How nursing students decide what is best for their patients is not well understood. Objective The objective is to examine nursing students' views on doing what is best for patients during their clinical experiences and how they seek to establish patient interests when providing care. Research questions guiding the interview were as follows: (1) What are nursing students' perceptions of patient interests? (2) What factors influence nursing (...) students' perceptions of advocating for patient’s interests? Research design Qualitative descriptive research using thematic analysis. Participants and research context Data was collected through individual online interviews with nine nursing students with clinical experience. Ethical considerations The study was approved by the University Research Ethics Committee. Participants provided digital informed consent. Results The students asserted that they are able to understand the patients' interests by placing emphasis on the patients' needs. They believe that it is crucial to adopt a collaborative strategy for the provision of care to meet these requirements. In addition, some of them expressed concern over the most effective methods of advocating for the interests of patients. Three themes were identified. (1) Focussing on patient needs first, (2) taking a collective approach, and (3) learning how to advocate. Conclusions Students understand and value the ethical commitments associated with advocating for the patient's best interest by considering factors such as prioritising the patient's needs, adopting a strategy that involves everyone, and acquiring the ability to undertake the advocacy role. Additionally, nursing education strategies in clinical contexts require additional study to inspire students to do what is in their patient’s best interests. (shrink)

This paper aims to critique the phenomenon of advanced patient autonomy and choice in healthcare within the specific context of self-testing devices. A growing number of self-testing medical devices are currently available for home use. The premise underpinning many of these devices is that they assist individuals to be more autonomous in the assessment and management of their health. Increased patient autonomy is assumed to be a good thing. We take issue with this assumption and argue that self-testing provides a (...) specific example how increased patient autonomy and choice within healthcare might not best serve the patient population. We propose that current interpretations of autonomy in healthcare are based on negative accounts of liberty to the detriment of a more relational understanding. We also propose that Kantian philosophy is often applied to the healthcare arena in an inappropriate manner. We draw on the philosophical literature and examples from the self-testing process to support these claims. We conclude by offering an alternative account of autonomy based on the interrelated concepts of relationality, care and responsibility. (shrink)