In contrast to standardized guidelines, personalized medicine and person centered care are two notions that have recently developed and are aspiring for more individualized health care for each single patient. While having a similar drive toward individualized care, their sources are markedly different. While personalized medicine stems from a biomedical framework, person centered care originates from a caring perspective, and a wish for a more holistic view of patients. It is unclear to what extent these two (...) concepts can be combined or if they conflict at fundamental or pragmatic levels. This paper reviews existing literature in both medicine and related philosophy to analyze closer the meaning of the two notions, and to explore the extent to which they overlap or oppose each other, in theory or in practice, in particular regarding ethical assumptions and their respective practical implications. (shrink)

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

Background The significance of medical implants goes beyond technical functioning and reaches into everyday life, with consequences for individuals as well as society. Ethical aspects associated with the everyday use of implants are relevant for individuals’ lifeworlds and need to be considered in implant care and in the course of technical developments. Methods This scoping review aimed to provide a synthesis of the existing evidence regarding ethically relevant psychosocial and cultural aspects in cochlear, glaucoma and cardiovascular implants in patient-centered (...) empirical research. Systematic literature searches were conducted in EBSCOhost, Philpapers, PsycNET, Pubmed, Web of Science and BELIT databases. Eligible studies were articles in German or English language published since 2000 dealing with ethically relevant aspects of cochlear, glaucoma and passive cardiovascular implants based on empirical findings from the perspective of (prospective) implant-wearers and their significant others. Following a descriptive-analytical approach, a data extraction form was developed and relevant data were extracted accordingly. We combined a basic numerical analysis of study characteristics with a thematically organized narrative synthesis of the data. Results Sixty-nine studies were included in the present analysis. Fifty were in the field of cochlear implants, sixteen in the field of passive cardiovascular implants and three in the field of glaucoma implants. Implant-related aspects were mainly found in connection with autonomy, freedom, identity, participation and justice, whereas little to no data was found with regards to ethical principles of privacy, safety or sustainability. Conclusions Empirical research on ethical aspects of implant use in everyday life is highly relevant, but marked by ambiguity and unclarity in the operationalization of ethical terms and contextualization. A transparent orientation framework for the exploration and acknowledgment of ethical aspects in “lived experiences” may contribute to the improvement of individual care, healthcare programs and research quality in this area. Ethics-sensitive care requires creating awareness for cultural and identity-related issues, promoting health literacy to strengthen patient autonomy as well as adjusting healthcare programs accordingly. More consideration needs to be given to sustainability issues in implant development and care according to an approach of ethics-by-design. (shrink)

In recent years the literature on bioethics has begun to pose the sociological challenge of how to explore organisational processes that facilitate a systemic response to ethical concerns. The present discussion seeks to make a contribution to this important new direction in ethical research by presenting findings from an Australian pilot study. The research was initiated by the Clinical Ethics Committee of Redland Hospital at Bayside Health Service District in Queensland, Australia, and explores health professionals’ understanding of the nature of (...) ethics and their experience with ethical decision-making within an acute medical ward. This study focuses on the actual experience, understanding and attitudes of clinical professionals in a general medical ward. In particular, the discussion explores the specific findings from the study concerned with how a multi-disciplinary team of health professionals define and operationalise the notion of ethics in an acute ward hospital setting. The key issue reported is that health professionals are not only able to clearly articulate notions of ethics, but that the notions expressed by a multi-disciplinary diversity of participants share a common definitional concept of ethics as patient-centred care. The central finding is that all professional groups indicated that there is a guiding principle to address their ethical sense of the ‘good’ or the ‘ought’ and that is to act in a way that furthered the interests of patients and their families. The findings affirm the importance of a sociological perspective as a productive new direction in bioethical research. (shrink)

BackgroundPatient-centred care and patient autonomy is one of the key factors to better quality of service provision, hence patient outcomes. It enables the development of patients’ trusts which is an important element to a better doctor-patient relationship. Given the increasing number of patient disputes and conflicts between patients and doctors in Chinese public hospital, it is timely to ensure patient-centred care is fully and successfully implemented. However, limited studies have examined the views and practice in different aspects of (...) patient-centred care among doctors in the Chinese public hospitals.MethodsA quantitative approach was adopted by distributing paper-based questionnaires to doctors and patients in two hospitals (Level III and Level II) in Jinan, Shandong province, China.ResultsIn total, 614 doctors from the surgical and internal medicine units of the two hospitals participated in the survey yielding 90% response rates. The study confirmed the inconsistent views among doctors in terms of their perception and practice in various aspects patient-centred care and patient autonomy regardless of the hospital where they work (category II or category III), their unit speciality (surgical or non-surgical), their gender or seniority. The high proportion of doctors (more than 20%) who did not perceive the importance of patient consultation prior to determining diagnostic and treatment procedure is alarming. This in in part due to the belief held by more than half of the doctors that patients were unable to make rational decisions and their involvement in treatment planning process did not necessarily lead to better treatment outcomes.ConclusionThe study calls for the development of system level policy and organisation wide strategies in encouraging and enabling the practice of patient-centred care and patient autonomy with the purposes of improving the quality of the service provided to patients by Chinese hospitals. (shrink)

VAN MOSSEL C, ALFORD M and WATSON H. Nursing Inquiry 2011; 18: 278–289 Challenges of patient‐centred care: practice or rhetoric.

The philosophy of patient-centred care has become widely embraced but its implementation is dependent on interrelated factors. A factor that has received limited attention is the role of policy tools. In Ontario, one method government can use to promote healthcare priorities is through health regulatory colleges, which set the standard of practice for health professionals. The degree to which government policy in support of patient-centered care has influenced the direction provided by health regulatory colleges to their members, and (...) ultimately impacted actual patient care, remains unclear. This study investigates the extent to which Ontario’s health regulatory colleges have provided explicit written guidance to members related to the importance of patient-centred care. It also explores applied and theoretical explanations that may further our understanding of why patient-centred care has not been more fully embraced. Findings reveal that guidance provided by Ontario’s health regulatory colleges varies widely. Institutional barriers and the choice of policy tools for disseminating government preferences may hinder full implementation of the principles of patient-centred care. More fully understanding the role health regulatory colleges’ play in facilitating the implementation of health policy will contribute positively to dialogue and to efforts to achieve positive health system reforms. (shrink)

Policy reforms implemented in Saudi Arabia in recent years aim to modernize the culture and infrastructure of healthcare delivery and are expected to integrate person‐ and patient‐centered care principles throughout the national healthcare system. However, in a complex multicultural environment where most nurses are international migrant workers, unique challenges emerge that frame the delivery of care. Better understanding is needed about what nurses perceive to be high‐quality, person‐centered care in Saudi Arabia and how they manage to enact (...) it in practice. Semi‐structured interviews were conducted with 21 nurses working in two tertiary hospitals in Riyadh, the capital city. Participants included Saudi citizens (n = 9) and expatriates (n = 12) who were asked to describe their perceptions of quality nursing care and explain the obstacles that they encounter in providing such care. Nurses reported extensive efforts to achieve individualized, empathetic, developmentally appropriate care. Their descriptions of care aligned with principles of patient‐centeredness in care but were not separable from challenges at the patient, organizational, and regional levels, including staffing and supplies shortages, gaps in regional care coordination, inadequate language translation services, variability in cultural beliefs about healthcare communication, and overt discrimination against expatriate workers. Nurses reported creative strategies to achieve professional nursing values while navigating a dynamic landscape of constraints. The findings add to literature suggesting that person‐centeredness in care cannot be understood outside the social and organizational conditions that shape it. (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)

Clinical Ethics, Ahead of Print. It could hardly be denied that healthcare should be patient-centred. However, some of the practices commonly described as patient-centred care may have ethically problematic consequences. This article identifies and discusses twelve ethical conflicts that may arise in the application of person-centred care. The conflicts concern e.g. privacy, autonomous decision-making, safeguarding medical quality, and maintaining professional egalitarianism as well as equality in care. Awareness of these potential conflicts can be helpful in finding the (...) best way to ensure that healthcare has its focus on the needs and interests of the patients. Patient-centred care may have to take different forms, depending of the nature of the disease, the patient’s life situation, and the economic, organizational and technological resources available to the healthcare unit. (shrink)

This essay critically evaluates the claim that competition in medicine destroys the moral integrity of the traditional patient-physician relationship. The author argues that the traditional patient-centered ethic is indefensible on moral grounds, and that it should be jettisoned in favor of a fiduciary ethic. A fiduciary ethic is found to provide the best defensible account of the patient-physician relationship because it takes seriously the roles economic efficiency, competition, and respect for individual self-determination play in fashioning moral health care delivery. (...) Keywords: competition, patient-physician relationship, fiduciary ethic, patient-centered ethic CiteULike Connotea Del.icio.us What's this? (shrink)

Background An increasing number of studies on physicians’ professionalism have been done since the 2002 publication of Medical Professionalism in the New Millennium: A Physician Charter. The Charter proposed three fundamental principles and ten responsibilities. However, most studies were done in developed countries, and few have been done in China. Additionally, few studies have examined the effect of patient-centered hospital culture (PCHC) on physicians’ professionalism. We aimed to investigate physicians’ medical professionalism in public hospitals in China, and to assess mediating (...) effect of professional attitudes in the relationship of PCHC with professional behaviours. Methods Self-administered questionnaires including professional attitudes (20 items) and behaviours (10 items) survey and PCHC scale (22 items) were given to clinical physicians in five public hospitals, China. The mediating effect of professional attitudes in the relationship of PCHC with professional behaviours was tested. Result 232 valid questionnaires were collected. More than 90% (208) respondents agreed with 15 of 20 specific statements on medical professionalism. As for the responsibility of improving quality of care, 54 (23%) respondents disagreed with reporting of incompetent colleagues and as for the responsibility of maintaining professional competence, 49 (21%) disagreed with recertification. More than 185 (83%) respondents reported that they sometimes, usually, or always showed the four positive behaviours on the questionnaire, and 173 (77%) reported that they never showed the six negative behaviours. Mediating effect analysis revealed that two dimensions of PCHC (i.e. value/institution culture and behaviour/material culture) had a significant positive impact on physicians’ professional behaviour, and professional attitude played a complete mediation role between them, but another dimension of PCHC (i.e. negative evaluation of hospital) directly affected professional behaviour without influencing professional attitude. Conclusion Chinese physicians showed positive professional attitudes and behaviours. Different dimensions of PCHC affected physicians’ attitudes and behaviours in different ways. (shrink)

An ethically sound discharge from the hospital can be impeded by a number of factors, including a lack of payor for a patient’s care, a lack of appropriate discharge options, and a lack of authority to sign a patient into a long-term facility. In some cases, the primary barrier involves the patient’s lack of financial decision-making capacity.When a patient’s income comes primarily from government assistance, financial decision making is connected to both the individual’s well-being and to fair allocation of (...) resources. Taking away another person’s financial independence is a substantial intrusion on autonomy and should not be considered lightly. However, poor management of funds can lead to homelessness, medical noncompliance, vulnerability to financial exploitation, and other threats to human flourishing. As with medical decision-making capacity, poor decisions alone do not invalidate an individual’s right to self-determination. And as with medical decision-making capacity, such determinations should not be made ad hoc or be capricious, but should rely on sound assessment criteria. When there are justified concerns that a patient may be vulnerable due to limited financial decision-making capacity, an evaluation should be completed and a surrogate payee be sought, when appropriate. (shrink)

Howard Brody identifies “drug-centered care” as a contrast to “patient-centered care” and asks whether drug-centered care promotes the same outcomes that justify patient-centered care—health and dignity for patients and virtue in providers. Answering in the negative, Brody provides a sobering account of how the pharmaceutical industry molds our disease concepts and our perspectives on medications as medical tools. Brody’s new concept was set up to fail, much as if he had named it “money-centered care” or (...) simply “bad care.” This essay asks whether there is a way to reconceptualize drug-centered care such that, even if it does not promote health, dignity, and virtue, it is at least not obviously at odds with these goals. I identify four ways to show that drug-centered care has, in limited cases, morally legitimate application. I show that whether the morally legitimate application of drug-centered care is in the service of health per se, enhancement or quality of life depends on the theoretical background adopted. (shrink)

This article provides a new argument and a new value-theoretical ground for person-centered care and shared decision making that ascribes to it the role of enabling rational choice in situations involving clinical choice. Rather than referring to good health outcomes and/or ethical grounds such as patient autonomy, it argues that a plausible justification and ground for person-centered care and shared decision making is preservation of rationality in the face of comparative non-determinacy in clinical settings. Often, no alternative treatment (...) will be better than or equal to every other alternative. In the face of such comparative non-determinacy, Ruth Chang has argued that we can make rational decisions by invoking reasons that are created through acts of willing. This article transfers this view to clinical decision making and argues that shared decision making provides a solution to non-determinacy problems in clinical settings. This view of the role of shared decision making provides a new understanding of its nature, and it also allows us to better understand when caregivers should engage in shared decision making and when they should not. (shrink)

Whereas evidence-based medicine (EBM) encourages the translation of medical research into decision-making through clinical practice guidelines (CPGs), patient-centred care (PCC) aims to integrate patient values through shared decision-making. In order to successfully integrate EBM and PCC, I propose a method of orienting physician decision-making to overcome the different obligations set out by a formally-rational EBM and substantively-rational ethics of care. I engage with Weber’s concepts “the ethic of responsibility” andverstehenas a new model of clinical reasoning that reformulates the (...) relationship between medical knowledge and social values, while demonstrating the relevance of the classical sociological cannon to contemporary medical humanities. (shrink)

Even the most scientifically reductionist view of the individual reveals that we are complex systems nested within complex systems. These interactions within and among systems are based and depend on numerous variables of our environment. If we define ethics as a system of moral decision making, then it becomes clear that these decisions ultimately affect the situation of managing our activities and relationships with others in our environment. Given that ecology literally means “a study or system of wisdom and reasoning (...) about the interrelation of organisms in their environment or place of inhabitance,” Owen Flanagan's description of ethics as “human ecology” takes on considerable relevance and importance. (shrink)

Background In current Western medical ethics, patient-centered medicine is considered the norm. However, the cultural background of collectivism in East Asia often leads to family-centered decision-making. In Japan, prior studies have reported that family-centered decision-making is more likely to be preferred in situations of disease notification and end-of-life decision-making. Nonetheless, there has been a recent shift from collectivism to individualism due to changes in the social structure. Various personal factors have also been reported to influence moral decision-making. Therefore, this study (...) examined whether the current trend in attitudes of healthcare decision-making in Japan is family-centered or patient-centered among the general public and physicians. In addition, the personal factors that influence this tendency were examined.Methods Three vignettes on disease notification and two vignettes on decision-making during end-of-life care were created, and 457 members of the public and 284 physicians were asked about their attitudes (behavioral intentions) regarding these vignettes.Results Approximately, 95% of physicians were patient-centered in explaining the patient’s severe medical condition. However, approximately 80% of physicians emphasized the wishes of the family over patient wishes when making life-sustaining decisions. Nearly half the general public emphasized the patient’s wishes in the explanation of a severe medical condition and in life-sustaining decisions. In both the public and physician groups, personal factors, particularly the presence or absence of a disease under treatment and prior caregiving experience, influenced ethical attitudes toward medical treatment decisions.Conclusions In relatively low-conflict situations, such as the announcement of a patient’s medical condition, physicians tended to be patient-centered, while they tended to be family-centered in situations of strong conflict in withholding life-sustaining treatment. The fact that personal factors influenced the family-centered response in situations of strong conflict highlights the importance of not only acquiring knowledge of medical ethics but also learning to fairly apply this knowledge in practice. (shrink)

This book provides the reader with a theoretical and practical understanding of two health care delivery models: the patient/child centred care and family-centred care. Both are fundamental to caring for children in healthcare organizations. The authors address their application in a variety of paediatric healthcare contexts, as well as the ethical and legal issues they raise. Each model is increasingly pursued as a vehicle for guiding the delivery of health care in the best interests of children. (...) Such models of health care delivery shape health care policies, programs, facility design, resource allocation decisions and day-to-day interactions among patients, families, physicians and other health care professionals. To maximize the health and ethical benefits these models offer, there must be shared understanding of what the models entail, as well as the ethical and legal synergies and tensions they can create. This book is a valuable resource for paediatricians, nurses, trainees, graduate students, practitioners of ethics and health policy. (shrink)

There is an increasing recognition internationally of the critical impact of communication within healthcare. The link between ineffective communication, patient dissatisfaction and critical incidents is well established. Family Planning New South Wales has sought to address patient-centred care and communication in its policy platform. This article reports on research conducted within FPNSW, which analysed the discourse features that constituted effective doctor–patient1 communication in sexual and reproductive health consultations. The principal aim of the research was to understand how effectively messages (...) were conveyed and received and to what degree patients were active participants in their own sexual healthcare. Analysed consultations were characterised by extremely high levels of communicative competence on the part of the doctors who integrated medical expertise with the development of interpersonal relationships with patients, thus positioning patients as active contributors to the consultations and to decisions about their ongoing treatment. The detailed linguistic analysis identified characteristic features of patient-centred communication that are essential to patient-centred care. These interactions demonstrate that communicating care is just as important as delivering care and involves a drawing together of the medical and the interpersonal in consultations. The article details strategies for interweaving medical knowledge and establishing rapport that can inform practitioner communication practices across different healthcare contexts. (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)

This systematic review identified and evaluated instruments measuring patients' perceptions of patient‐centred nursing care. Of 2629 studies reviewed, 12 were eligible for inclusion. Four instruments were reported: The Individualized Care Scale, the Client‐Centred Care Questionnaire, the Oncology patients' Perceptions of the Quality of Nursing Care Scale and the Smoliner scale. These instruments cover themes addressing patient participation and the clinician–patient relationship. Instruments were shown to have satisfactory psychometric properties, although not all were adequately assessed. More (...) research is needed regarding test–retest reliability, convergent and discriminant validity, validity with known groups and structural validity using confirmatory factor analysis. (shrink)

Person‐centred care is founded on ethics as a basis for organizing care. In spite of healthcare systems claiming that they have implemented person‐centred care, patients report less satisfaction with care. These contrasting results require clarification of how to practice person‐centred ethics using Paul Ricoeur's ‘Little ethics’, summarized as: ‘aiming for the good life, with and for others in just institutions’. In this ethic Kantian morality is at once subordinate and complementary to Aristotelian ethics because the ethical (...) goal needs to be critically assessed and passed through the examination of the norm in each care situation. This paper presents examples that describes a person‐centred care practice that balance a critical review of care activities based on a conviction of aiming for patients' wellbeing. In contrast to patients' experiences of person‐centred care in real life, research projects have shown that if the clinical performers comprehend and apply the practice of person‐centred ethics, patients report positive outcomes. The implementation of person‐centred care therefore demands that stakeholders and managers enables and requires that healthcare staff study ethics in the same way as studying for example pharmacology is required when handling patients' medicines. (shrink)

Rationale: Patients with advanced dementia experience multifaceted vulnerabilities because of their diminished capacities for decision making. The dominant versions of person-centred care (PCC) emphasise patient preferences and autonomy, which often undermines a recognition of their distinct unfulfilled needs. Determining whether an individual autonomy conception of personhood applies to patients with advanced dementia is morally problematic from various theoretical perspectives and leads to the one-approach-fits-all problem when caring for this patient population. -/- Aims and Objectives: The availability of patients' advanced (...) directives varies depending on their cultural backgrounds. The goal of the study is to argue that PCC, with a focus on relational autonomy, should be the first step for caring for patients with advanced dementia. -/- Method: The study engages in a critical exploration of inclusivity and diversity in ethical thinking within a framework of PCC and uses philosophical argumentation to assess the viability of a relational autonomy conception of PCC. -/- Results and Conclusion: By taking relationality seriously, especially in caring for patients with advanced dementia in a multicultural society, and by considering the moral nexus of unmet needs through the perspective of PCC, we can resolve the problem of one-approach-fits-all in dementia care. (shrink)

This study investigates the role of language in cross‐sector collaboration between mental health hospitals and municipalities, focusing on the challenges of maintaining continuity of care and integrating patient‐centered approaches. Using Fairclough's framework for critical discourse analysis, we examined focus group interviews with 21 healthcare professionals, including nurses, social workers, and psychiatrists, to identify key themes and patterns in how cross‐sector collaboration is discussed. The analysis revealed a dominant medicalized discourse in hospital settings, which often emphasized structured care processes (...) like treatment plans and medication management, overshadowing more flexible, patient‐centered approaches common in community‐based services. Power dynamics were evident, with hospital professionals frequently positioned as active agents, while patients and community‐based workers were portrayed in more passive roles. Although efforts to involve patients in decision‐making were noted, these were often controlled by professionals, reflecting a mediated approach to patient empowerment. The findings highlight the cultural and structural divides between hospital and community services and suggest the need for improved communication strategies, integrated care pathways, and a shift toward more inclusive, patient‐centered care models. Addressing these discursive barriers is crucial for achieving more effective, integrated, and patient‐centered care, ultimately improving outcomes for patients. (shrink)

Patient centred diagnosis is best practised through shared decision making; an iterative dialogue between doctor and patient, whichrespects a patient’s needs, values, preferences, and circumstances. -/- Shared decision making for diagnostic situations differs fundamentally from that for treatment decisions. This has important implications when considering its practical application. -/- The nature of dialogue should be tailored to the specific diagnostic decision; scenarios with higher stakes or uncertainty usually require more detailed conversations.

Person-centred care is a cornerstone of contemporary health policy, research and practice. However, many researchers and practitioners worry that it lacks a 'clear definition and method of measurement,' and that this creates problems for the implementation of person-centred care and limits understanding of its benefits. In this paper we urge caution about this concern and resist calls for a clear, settled definition and measurement approach. We develop a philosophical and conceptual analysis which is grounded in the body of (...) literature concerning the theory and practice of person-centred care. We consider a range of influential definitional frameworks of person-centred care, highlighting their differences and showing that they do not correspond to a clearly circumscribed and consistent underlying concept. We argue that a degree of indeterminacy and vagueness should not be seen as a problem with the concept of person-centred care; these are features of a rich and contested concept which exists prior to and outside of practical and technical operational definitions and applications. We defend the value of operating with multiple accounts of person-centred care, arguing that what counts as being person-centred can vary across different care contexts, in relation to different patient groups, and as a reflection of different, defensible ethical perspectives. Although the idea of a single, agreed definition is attractive and may seem to be a practical or even necessary step towards meaningful and coordinated action, we argue that this is only the case in a qualified sense. Comprehensive attempts to narrow down the concept in this way should be resisted, as they risk undermining what it is that makes person-centredness a valuable concept in healthcare. (shrink)

The ethical pre-condition of randomised controlled trials is, at present, the presence of equipoise. This refers to an opinion of the investigator that there is uncertainty as to the merits of the treatments being compared. It is argued that since the decision to enrol is the potential subject’s, the investigator’s opinion is not ethically relevant. It is proposed instead that equipoise be patient-centred, and that a trial is in equipoise for a patient when enrolling gives them the same chance of (...) a good outcome as not enrolling. It is shown that trial enrolment is normally easily the best strategy for achieving a good outcome, and that trials currently thought to be unethical may be in patient-centred equipoise. This is so for three reasons: (1) patients in trials receive superior care, (2) trial enrolment minimises the risk of being a victim of a therapeutic disaster and (3) health professionals make mistakes, and a 50% chance of receiving the worse treatment until a trial reports is always better than any chance of receiving the worse treatment indefinitely. It is concluded that so long as the standard of professional conduct is the furtherance of patients’ objective interests randomised controlled trials are ethical. (shrink)

Despite the prominence of person‐centred care (PCC) in nursing, there is no general agreement on the assumptions and the meaning of PCC. We sympathize with the work of others who rethink PCC towards relational, embedded, and temporal selfhood rather than individual personhood. Our perspective addresses criticism of humanist assumptions in PCC using critical posthumanism as a diffraction from dominant values We highlight the problematic realities that might be produced in healthcare, leading to some people being more likely to be (...) disenfranchised from healthcare than others. We point to the colonial, homo‐ and transphobic, racist, ableist, and ageist consequences of humanist traditions that have influenced the development of PCC. We describe the deep rooted conditions that structurally uphold inequality and undermine nursing practice that PCC reproduces. We advocate for the self‐determination of patients and emphasize that we support the fundamental mechanisms of PCC enabling patients' choice; however, without critical introspection, these are limited to a portion of humans. Last, we present limitations of our perspective based on our white*‐cisheteropatriarchy** positionality. We point to the fact that any reimagining of models such as PCC should be carefully done by listening, following, and ceding power to people with diversity dimensions*** and the lived experience or expertise that exists from diverse perspectives. We point towards Black, queer feminism, and critical disabilities studies to contextualize our point of critique with humanism and PCC to amplify equity for all people and communities. Theory and philosophy are useful to understand restrictive factors in healthcare delivery and to inform systematic strategies to improve the quality of care so as not to perpetuate the oppression of groups of people with diversity dimensions. *We purposely capitalize Black and use lower case for white to decentre whiteness and as an intentional act of antiracism (see White Homework a podcast series by Tori W. Douglas). **Cisheteropatriarchy describes people with intersecting identities of dominant social groups; cisgender is the gender identity that aligns with the gender you were assigned at birth, hetero means heterosexual, and patriarchy refers to structural systems of power based on maleness where women are often excluded and hold less power. ***With diversity dimensions, we refer to subjective lived experience and material realities of people that exist outside the ‘dominant minorities' of white‐cisheteropatriarchy, meaning groups of people in society who historically and currently hold more power and through this, structurally dominate the norms and possibilities of living for other people. (shrink)

The prospective robots in healthcare intended to be included within the conclave of the nurse-patient relationship—what I refer to as care robots—require rigorous ethical reflection to ensure their design and introduction do not impede the promotion of values and the dignity of patients at such a vulnerable and sensitive time in their lives. The ethical evaluation of care robots requires insight into the values at stake in the healthcare tradition. What’s more, given the stage of their development and (...) lack of standards provided by the International Organization for Standardization to guide their development, ethics ought to be included into the design process of such robots. The manner in which this may be accomplished, as presented here, uses the blueprint of the Value-sensitive design approach as a means for creating a framework tailored to care contexts. Using care values as the foundational values to be integrated into a technology and using the elements in care, from the care ethics perspective, as the normative criteria, the resulting approach may be referred to as care centered value-sensitive design. The framework proposed here allows for the ethical evaluation of care robots both retrospectively and prospectively. By evaluating care robots in this way, we may ultimately ask what kind of care we, as a society, want to provide in the future. (shrink)

Perkin and Resnik advocate the use of muscle relaxants to prevent the “agony of agonal respiration” arguing that this is compatible with the principle of double effect. The proposed regime will kill patients as certainly as smothering them would. This may lead some people to reject the argument as an abuse of the principle of double effect. I take a different view. In the absence of an adequate theory of intention, the principle of double effect cannot distinguish between the intentional (...) and merely foreseen termination of life, and cannot rule out end-of-life decisions that are often regarded as impermissible.What Perkin and Resnik are in effect saying is that there are times when physicians have good reasons to end a patient’s life—deliberately and intentionally—for the patient’s sake. Why not say so—instead of going through the agony of trying to match sanctity of life and patient-centred medical care? (shrink)

In this paper three models of teaching and learning medical ethics are discussed critically, the traditional and revised vocational models, and the patient-centred model. The autonomy-oriented patient-centred ethics of Beauchamp and Childress is rejected in favour of a hermeneutic practical ethics. A performative conception of ethics teaching is recommended as the most appropriate model for use in the theory and practice of ethics pedagogy.

Our goal was to explore self‐care practices among men who have sex with men in the context of Mpox in Brazil. This study used qualitative research methods, including interviews and thematic analysis, to collect and analyze data from male participants across the Brazilian territory. The narratives unveil men's perspectives on self‐care, risk reduction, and health beliefs during the Mpox pandemic. Our findings highlight a multifaceted approach to self‐care among men, encompassing hygiene, physical contact management, mask usage, skin (...) lesion vigilance, and adherence to official guidelines. Men's attitudes toward sexual behaviors emphasize the importance of reducing sexual partners, practicing safe sex, and combating misinformation through accurate information dissemination. The development of these behaviors and self‐care practices can be facilitated by nurses guided by Dorothea Orem's Self‐Care Theory, supported by patient‐centered care, with strategies to address and confront the stigma associated with the disease and provide emotional support. Thus, the study underscores the pivotal role of self‐care in mitigating infection risks, especially in the context of emerging infectious diseases. It acknowledges the impact of socio‐cultural factors and healthcare policies on men's preventive measures. However, it also recognizes limitations, such as potential bias due to stigma concerns and a nonrepresentative sample. Ultimately, the research advocates for tailored education, promotion of gender equity, and healthcare empowerment to effectively manage health risks in such contexts. (shrink)

Background End-stage renal disease (ESRD) is the final stage of chronic kidney disease. Yet dialysis is not suitable for all ESRD patients. Moreover, while shared decision-making (SDM) is the preferred model for making medical decisions, little is known about SDM between nephrology nurses and ESRD patients in Israel. Research Objective Assessing the views, attitudes, practices, and ethical dilemmas of nephrology nurses in Israel regarding SDM with ESRD patients. Methods Using the descriptive quantitative approach, questionnaires were completed by 444 nephrology nurses (...) in Israel. In addition to conducting descriptive statistics, t-tests for independent samples, f-tests for analysis of variance, and both tests for independence were also performed. Ethical Considerations The research aims, expected advantages and risks have been explained to respondents before completing the questionnaire to secure informed consent. Anonymity and confidentiality were ensured throughout the study. The study was approved by the Research Ethics Committee at the University of Haifa (Approval # 411/21). Results About one-third (30%–36.5%) of nurses reported discussing quality of life issues with ESRD patients, asking about their advance directives/power of attorney, exploring cultural/religious beliefs in end-of-life care, and ask about their preferred place of death. Nurses who convey high levels of patient-centered care (68.9%, p<0.0001), have high end-of-life training (76.2%, p<0.0001), and report cooperating with interdisciplinary teams (63.8%, p = 0.0415), also reported higher SDM practices than others. Nurses who refer less patients to palliative care (70%, p<0.0001) reported higher involvement in SDM compared to other nurses. Conclusions Nephrology nurses in Israel do not tend to implement the SDM model, despite its potential for improving quality of life for ESRD patients and their families and increasing conservative care options. Policy makers and educators in Israel should develop and implement training programs and support in the workplace, to enhance SDM between nephrology nurses and ESRD patients. (shrink)

In 2013, in accordance with a provision in the Patient Protection and Affordable Care Act, the U.S. government began fining hospitals with “excessive” patient readmission rates. Those working to respond to this issue have identified discharge communication with patients as a critical component. In response to this exigency and to contribute to the conversation in the medical humanities about the field’s purview and orientation, this article analyzes studies of and texts about communication in health and medicine, ultimately arguing that (...) the on-going circulation of compliance rhetoric and assumptions has limited efforts to improve patient communication. The article, furthermore, considers that humanist ideals of agentic action, the patient-centered care movement’s emphasis on the patient, and biomedicine’s tendency to treat evidence-based knowledge as fixed and given may have combined to support a rationale for using patient adherence to treatment guidelines as metrics in measurement studies designed to identify effective communication strategies. Finally, the article proposes that those working in the medical humanities consider the value of interdisciplinary posthumanist scholarship—specifically, its treatment of agency and knowledge as emergent, distributed, and contingent—and its potential to transform or extend in productive ways the conversation about what constitutes effective communication with patients. (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)

Background: Advance care planning gives patients and their family members the possibility to consider and make decisions regarding future care and medical procedures. Aim: To explore the view of people in the early stage of dementia on planning for future care. Research design: The study is a qualitative interview study with a semistructured interview guide. The data were analyzed according to the Qualitative Analysis Guide of Leuven. Participants and research context: Dementia nurses assisted in the recruiting of (...) people with dementia for participation in the study. Study information was mailed to 95 people with early stage dementia. Ten people with dementia and eight caregiver spouses participated in the study. Ethical considerations: People with dementia belong to a vulnerable patient group, and care was taken in the areas of informed consent and accessible information. Findings: The views of people with dementia are characterized by a complex storyline involving tensions and movement within the themes of wants, beliefs, and levels of insight. Participants wanted to think about the future but also wanted to live in the here and now. Discussion: High demands are placed on the advance care planning process for people with dementia and their family caregivers. A dignity-enhancing approach in dementia care emphasizes the dignity of and respect for this vulnerable and care-dependent patient group. Conclusion: The process of advance care planning in dementia care needs to go beyond person-centered care to a relationship-centered process. The illness trajectory and the impact on autonomy need to be taken into consideration. (shrink)

Calling on the methodology of psychology, the authors explore the way illness alters the self-image of the sick person, and the way the experience changes the person who is ill. The reader is taken through the psychological impacts of the first clinical moment when the patient realizes he or she is in the altered state of illness, as well as the subsequent effects of pain, hospitalization, being bed-ridden, fatigued or disabled. The central thesis is that an integral picture of medicine (...) must include social-cultural aspects, the institutionalization of health care, and an attempt to provide patient-centered care. The approach taken is the empirically based psychosocial reflection of the disturbances to a person's self-image caused by various kinds of illness. Focusing on the world of the patient, the authors relate to problems concerning self-image, pain, exhaustion, isolation, handicaps, aging, dying and death. The relationships between patients and medical personnel are also examined. Concluding the work is an excellent bibliography keyed to the chapters of the text. (shrink)

The aim of this analysis was to examine the concept of time to rejuvenate and extend existing narratives of time within the nursing literature. In particular, we hope to promote a new trajectory in nursing research and practice which focuses on time and person‐centred care, specifically of older people with cognitive impairment hospitalized in the acute care setting. We consider the explanatory power of concepts such as clock time, process time, fast care, slow care and time (...) debt for elucidating the relationship between ‘good care’ and ‘time use’. We conclude by offering two additional concepts of time, plurotemporality and person‐centred time (PCT) which we propose will help advance of nursing knowledge and practice. Nurse clinicians and researchers can use these alternative concepts of time to explore and describe different temporal structures that honour the patient's values and preferences using experiential, observation‐based nursing research approaches. (shrink)

The values of individuals who have never had the capacity to express their preferences are often overlooked or even ignored in the decision-making process. The case of “Michael,” a non-verbal young adult with a genetic condition and intellectual disability, is presented to challenge the traditional approach of relying solely on clinical indicators and the “best interest” standard narrowly construed in healthcare decision-making. Michael's interaction with his environment, gleaned through his family's input, illustrates that values and quality of life can be (...) discerned through observed behaviors and preferences, even in the absence of communicative ability. We argue for a broader definition of “values” that encompasses any aspect of life that brings meaning or enjoyment to the individual. This model not only personalizes care for never-capacitated individuals but may also be applied to other incapacitated populations, such as those with dementia, suggesting that past directives may not always align with their evolving values and interests. Underlying this expanded understanding of values in healthcare is a patient-centered approach that accounts for personal elements that contribute to an individual's sense of purpose and satisfaction. (shrink)

The prospective robots in healthcare intended to be included within the conclave of the nurse-patient relationship—what I refer to as care robots—require rigorous ethical reflection to ensure their design and introduction do not impede the promotion of values and the dignity of patients at such a vulnerable and sensitive time in their lives. The ethical evaluation of care robots requires insight into the values at stake in the healthcare tradition. What’s more, given the stage of their development and (...) lack of standards provided by the International Organization for Standardization to guide their development, ethics ought to be included into the design process of such robots. The manner in which this may be accomplished, as presented here, uses the blueprint of the Value-sensitive design approach as a means for creating a framework tailored to care contexts. Using care values as the foundational values to be integrated into a technology and using the elements in care, from the care ethics perspective, as the normative criteria, the resulting approach may be referred to as care centered value-sensitive design. The framework proposed here allows for the ethical evaluation of care robots both retrospectively and prospectively. By evaluating care robots in this way, we may ultimately ask what kind of care we, as a society, want to provide in the future. (shrink)

In patient centred care, shared decision making is a central feature and widely referred to as a norm for patient centred medical consultation. However, it is far from clear how to distinguish SDM from standard models and ideals for medical decision making, such as paternalism and patient choice, and e.g., whether paternalism and patient choice can involve a greater degree of the sort of sharing involved in SDM and still retain their essential features. In the article, different versions of (...) SDM are explored, versions compatible with paternalism and patient choice as well as versions that go beyond these traditional decision making models. Whenever SDM is discussed or introduced it is of importance to be clear over which of these different versions are being pursued, since they connect to basic values and ideals of health care in different ways. It is further argued that we have reason to pursue versions of SDM involving, what is called, a high level dynamics in medical decision-making. This leaves four alternative models to choose between depending on how we balance between the values of patient best interest, patient autonomy, and an effective decision in terms of patient compliance or adherence: Shared Rational Deliberative Patient Choice, Shared Rational Deliberative Paternalism, Shared Rational Deliberative Joint Decision, and Professionally Driven Best Interest Compromise. In relation to these models it is argued that we ideally should use the Shared Rational Deliberative Joint Decision model. However, when the patient and professional fail to reach consensus we will have reason to pursue the Professionally Driven Best Interest Compromise model since this will best harmonise between the different values at stake: patient best interest, patient autonomy, patient adherence and a continued care relationship. (shrink)