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 paper examines the power relations in “patient-centred communication”. Drawing on the work of Michel Foucault I argue that while patient-centred communication frees the patient from particular aspects of medical power, it also introduces the patient to new power relations. The paper uses a Foucauldian analysis of power to argue that patient-centred communication introduces a new dynamic of power relations to the medical encounter, entangling and producing the patient to participate in the medical encounter in a particular (...) manner. (shrink)

Person‐centred care, with its central focus on the patient in partnership with healthcare practitioners, is considered to be the contemporary gold standard of care. This type of care implies effective communication from and by both the patient and the healthcare practitioner. This is often problematic in the case of the paediatric population, because of the many communicative challenges that may arise due to the child's developmental level, illness and distress, linguistic competency and disabilities. The principle of universal design put (...) forth in conventions and legislation means that the design of products and services should be usable by all people, to the greatest extent possible. Augmentative and alternative communication encompasses strategies, for example pictures and apps, that are typically used with people with communication disability. In this position paper, we argue for the universal use of augmentative and alternative communication to support person‐centred communication and care for children, regardless of age or potential disability. Clinical examples are shared from three different paediatric care settings where pictorial supports were applied universally. Interviews were conducted with children and adolescents (with and without disabilities), parents and healthcare practitioners, and the principles of universal design were used as a framework to demonstrate how person‐centred communication is supported in paediatric care. (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)

Individuals with intersex variations fall outside the normative sex binary of male and female for various reasons. These individuals are highly stigmatized and discriminated against in the legal, medical and social spheres. In this paper, we analyze manifestations of such discrimination in the healthcare context and hypothesize that Patient Centred Care (PCC) and Shared Decision Making (SDM) approaches are improperly practiced with intersex individuals. Through a narrative review of current literature, we present evidence of improper practice of PCC and SDM (...) and its effects on intersex individuals and, in the pediatric context, their parents. Misinformation by medical practitioners to parents of intersex individuals promotes the perpetuation of unnecessary surgical interventions. We propose strategies to improve intersex medical care, including better adherence to SDM and PCC guidelines as well as the sociocultural normalisation of intersex identity. Current perceptions of surgical interventions done on intersex infants and children need to better align with evidence-based physical and psychological health risks. All these strategies are part of preserving the autonomy and physical integrity of intersex individuals and ensuring that their well-being remains at the heart of their care in the medical context. (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)

Objectives: To assess whether according to healthcare providers, the creation of an ethics service responds to a need; assess the importance of an ethics service for healthcare providers; determine what ethics services should be offered and the preferred formats of delivery; and identify key issues to be initially dealt with by the ethics service.Design: A survey of healthcare providers in Québec’s Centre Local de Services Communautaires , healthcare institutions dedicated to community health and social services.Findings: 96 respondents agreed that an (...) ethics service was needed, and on average the ethics service project was judged to be very important. Preferred formats for ethics consultation and education were identified, as well as key concerns such as the need of respect for the patient as a person, elder abuse and ethical issues in home care.Conclusion: This survey is helping in the implementation of an ethics service and can guide others in similar healthcare institutions. (shrink)

The Treatment Escalation Plan (TEP) was introduced into our trust in an attempt to improve patient involvement and experience of their treatment in hospital and to embrace and clarify a wider remit of treatment options than the Do Not Resuscitate (DNR) order currently offers. Our experience suggests that the patient and family are rarely engaged in DNR discussions. This is acutely relevant considering that the Mental Capacity Act (MCA) now obliges these discussions to take place. The TEP is a form (...) that the doctor completes, ideally with the competent patient or close relative, documenting what treatment options would be appropriate if that patient were to become acutely unwell. Ventilation of the lungs, cardiac resuscitation, renal replacement therapy, intravenous fluids and antibiotics are all discussed. The study evaluated patient and relative experiences with the TEP. 55 patients or their relatives were interviewed regarding their experience of the TEP and thoughts regarding the process. 96% of patients and relatives evaluated thought that the TEP was a good idea. Free text comments were all positive and only 34% of patients claimed to feel anxious when completing the form. Following this study, the TEP has been expanded hospital wide and into the community within our trust. Discussions are currently taking place in hospitals within our region to introduce the TEP form into other local trusts. (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)

Communicating genetic information to family members has been the subject of an extensive debate recently in bioethics and law. In this context, the extent of the relatives’ right to know and not to know is examined. The mainstream in the bioethical literature adopts a liberal perception of patient autonomy and offers a utilitarian mechanism for solving familial tensions over genetic information. This reflects a patient-centred approach in which disclosure without consent is justified only to prevent serious harm or death to (...) others. Based on a legal and bioethical analysis on the one hand, and an examination of empirical studies on the other, this paper advocates the adoption of a relational perception of autonomy, which, in the context of genetics, takes into account the effect that any decision—whether to disclose or not to disclose—will have on the familial relationship and the dynamics of the particular family. Adding this factor to the criteria usually advocated by lawyers and ethicists will facilitate reaching a sensitive decision, which recognises the various interests of family members beyond the risk to physical health. Taking this factor into account will require a process of deliberation both between doctors and patients, and in the family. It will also require a relaxation of medical confidentiality, as the family rather than the patient is gradually perceived as the unit of care. Moreover, adopting such a relational approach will accord with current views of doctors and patients who base their decision primarily on the nature of the familial relationship. (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 development of person‐centred practice is inextricably linked with the debate about being a person and personhood. This debate takes on a particular relevance when certain prerequisites, which are often used as defining characteristics of persons, can no longer be autonomously fulfilled. This is the case, for example, with intensive care patients who are often (temporarily) impaired in their responsiveness and consciousness due to their critical state of health. Due to sedation, severity of illness and loss of voice, delivery of (...) person‐centred care in the intensive care setting is described as challenging. Despite far reaching implications on the therapeutic, ethical, and legal handling of patients in the intensive care setting, a definition of personhood at the stage of briefly diminished (by anesthetic measures), limited, or absent consciousness and ability to communicate has so far been discussed only superficially. To meet this challenge and to develop an understanding of person‐centred practice suitable for the context of intensive care, Emmanuel Levinas’ relational ethics and his understanding of radical alterity is discussed. We uncover the implications of Levinas Ethics of Radical Alterity on the care of the unconscious and unresponsive patient in the intensive care unit and further on the person‐centred approach to practice. The perspectives proposed in this paper provide an opportunity for the ontological embedding of a person‐centred care approach, which makes it possible to meet and care for these patients in a person‐centred manner. (shrink)

Compulsory psychiatric treatment is the norm in many Western countries, despite the increasingly individualistic and autonomous approach to medical interventions. Community Treatment Orders are the singular best example of this, requiring community patients to accept a variety of interventions, both pharmacological and social, despite their explicit wish not to do so. The epidemiological, medical/treatment and legal intricacies of CTOs have been examined in detail, however the ethical considerations are less commonly considered. Principlism, the normative ethical code based on the principles (...) of autonomy, beneficence, non-maleficence and justice, underpins modern medical ethics. Conflict exists between patient centred commentary that reflects individual autonomy in decision making and the need for supported decision making, as described in the Convention on the Rights of Persons with Disabilities and the increasing use of such coercive measures, which undermines this principle. What appears to have been lost is the analysis of whether CTOs, or any coercive measure in psychiatric practice measures up against these ethical principles. We consider whether CTOs, as an exemplar of coercive psychiatric practice, measures up against the tenets of principalism in the modern context in order to further this debate. (shrink)

This article explores the communication challenges faced by health professionals working with patients from high-context cultures (i.e. those that emphasize non-verbal communication), particularly in Southeast Asia, and proposes strategies to enhance interaction and patient care. Attention should be put on the impact of cultural dimensions such as high power distance and collectivism on patient behaviour and decision-making. In high power distance cultures, patients may be passive and reluctant to voice concerns, while collectivistic values often influence decisions through family (...) or community input. To address these challenges, communication guides designed to improve interactions include observing subtle non-verbal and para-verbal cues, practicing active listening, encouraging patient participation, providing adequate consultation time, and discussing care plans collaboratively. Additionally, using familial terms of address and incorporating Kleinmann’s eight questions are recommended to bridge cultural gaps and facilitate a better understanding of patients’ perspectives. The proposed strategies aim to foster a culturally sensitive and patient-centred approach, enhancing communication, improving patient satisfaction, and leading to better health outcomes. By implementing these practices, health professionals can navigate cultural complexities more effectively and deliver high-quality, respectful care. (shrink)

This study examined variation in medical practitioners’ practice-based conceptions of what it means to be a doctor, based on interviews with 30 clinicians who were also medical educators. Participants included general practitioners, surgeons and physicians (non-surgical specialists). Participants were asked to draw a concept map of ‘being a doctor’, followed by semi-structured interviews using a phenomenographic research design. Three conceptions were identified, varyingly focused on (1) treating patients’ medical problems; (2) maximising patients’ well-being; and (3) maximising community health. Each conception (...) was distinguished by variation in awareness of six underlying dimensions of being a doctor: (1) doctors’ actions; (2) treatment success; (3) patients’ actions; (4) patients’ well-being; (5) community needs; and (6) social justice. Whilst all participants included dimensions 1 and 2 in their described practice, numerous participants did not include dimensions 3 and 4, i.e. did not take the patients’ role and the impact of patients’ psychosocial context into account in their practice. This is concerning, especially amongst medical educators, given the widely acknowledged importance of patient-centred care in medical practice. Similarly, only some of the participants considered community health needs and felt a broader social responsibility beyond their responsibility to individual patients. These findings highlight aspects of the medical profession that need to be further emphasised in medical training and continuing professional development. (shrink)

In this paper we argue that the responsibility for systematic community-based preventive medicine should not be made part of the role of the general practitioner (GP). Preventive medicine cannot be shown to be more effective than curative or supportive medicine. Therefore, the allocation of the large amount of general practice staff time and resources required for systematic preventive medicine should not come at the expense of the care of the sick and the suffering. The traditional healing role of the GP (...) requires a cooperative patient-centred approach, whereas systematic preventive medicine is driven by rigid pre-set protocols and is intrinsically paternalistic. Trying to merge the two approaches is detrimental to the doctor-patient relationship. Furthermore, a number of potential pitfalls are identified that may be encountered in the implementation of preventive medicine programmes in general practice: interference with the course of the consultation; inadequate explanation and consent; distortion of practice priorities as reflected in quality indicators; temptation to record inaccurate data; conflict of interests where the doctor is rewarded for performance; patient blaming; exacerbation of the health gap. We suggest that a more justifiable strategy would be for GPs to identify patients at high risk and offer them specific preventive advice when the opportunity presents itself and at a time when the patient is likely to be most amenable to cooperate. Opportunistic health promotion offers higher expectations of benefit, as well as a more equitable allocation of the risks associated with preventive medicine, than a systematic community-based approach. (shrink)

The fair distribution of health resources is critical to health justice. But distributing healthcare equitably requires careful attention to the existing distribution of other resources, and the economic system which produces these inequalities. Health is strongly determined by socioeconomic factors, such as the effects of racism on the health of communities of colour, as well as the broader market-oriented healthcare and pharmaceutical systems that put the pursuit of profit above the alleviation of suffering. Two papers in this issue confront health (...) injustices at different scales, and make far-reaching recommendations for more just healthcare allocation policies. Orphan drugs are those that pharmaceutical companies are unwilling to develop unless they are offered financial incentives to do so. When a target patient group is very small, or very poor, producing drugs is unprofitable. If patients are to benefit from these drugs in a marketised pharmaceutical regime, governments must step in to provide incentives for research and development. Yet government spending ought to prioritise value for money, and is generally guided by a utilitarian framework. In the case of neglected tropical diseases, there is no moral conflict: large numbers of people would benefit greatly from these treatments. However, there are practical limitations: the governments of affected populations are often unable to fund incentives for research and development, and solidarity from elsewhere is limited.1 2 In the case of rare diseases, Global North governments usually can afford to incentivise the development of treatments to serve their populations, but given the small numbers of beneficiaries, doing so seems a questionable use of resources. Many Global North governments make an exception to the general utilitarian heuristic to accommodate the moral intuition that the claims of a person with a rare …. (shrink)

Some patients, following brain injury, do not outwardly respond to spoken commands, yet show patterns of brain activity that indicate responsiveness. This is “cognitive-motor dissociation” (CMD). Recent research has used machine learning to diagnose CMD from electroencephalogram (EEG) recordings. These techniques have high false discovery rates, raising a serious problem of inductive risk. It is no solution to communicate the false discovery rates directly to the patient’s family, because this information may confuse, alarm and mislead. Instead, we need a procedure (...) for generating case-specific probabilistic assessments that can be communicated clearly. This article constructs a possible procedure with three key elements: (1) a shift from categorical “responding or not” assessments to degrees of evidence; (2) the use of patient-centred priors to convert degrees of evidence to probabilistic assessments; and (3) the use of standardized probability yardsticks to convey those assessments as clearly as possible. (shrink)

We describe the teaching programme in ethics, law and communication skills for clinical medical students which is being developed as part of the Oxford Practice Skills Project. These three elements of practice are approached in an integrated teaching programme which aims to address everyday clinical practice. The role of a central value of patient-centred health care in guiding the teaching is described. Although the final aim of the teaching is to improve actual practice, we have found three 'sub-aims' helpful (...) in the development of the programme. These sub-aims are: increasing students' awareness of ethical issues; enhancing their analytical thinking skills, and teaching specific knowledge. (shrink)

Adjustments of everyday life in order to prevent disease or treat illness afflict partly unconscious preferences and cultural expectations that are often difficult to change. How should one, in medical contexts, talk with patients about everyday life in ways that might penetrate this blurred complexity, and help people find goals and make decisions that are both compatible with a good life and possible to accomplish? In this article we pursue the question by discussing how Habermas’ theory of communicative action can (...) be implemented in decision-making processes in general practice. The theory of deliberative decision-making offers practical guidelines for what to talk about and how to do it. For a decision to be rooted in patients’ everyday life it has to take into consideration the patient’s practical circumstances, emotions and preferences, and what he or she perceives as ethically right behaviour towards other people. The aim is a balanced conversation, demonstrating respect, consistency and sincerity, as well as offering information and clarifying reasons. Verbalising reasons for one’s preferences may increase awareness of values and norms, which can then be reflected upon, producing decisions rooted in what the patient perceives as good and right behaviour. The asymmetry of medical encounters is both a resource and a challenge, demanding patient-centred medical leadership, characterised by empathy and ability to take the patient’s perspective. The implementation and adjustments of Habermas’ theory in general practice is illustrated by a case story. Finally, applications of the theory are discussed. (shrink)

__Neurotechnology and Direct Brain Communication__ focuses on recent neuroscientific investigations of infant brains and of patients with disorders of consciousness, both of which are at the forefront of contemporary neuroscience. The prospective use of neurotechnology to access mental states in these subjects, including neuroimaging, brain simulation and brain computer interfaces, offers new opportunities for clinicians and researchers, but has also received specific attention from philosophical, scientific, ethical and legal points of view. This book offers the first systematic assessment of these (...) issues, investigating the tools neurotechnology offers to care for verbally non-communicative subjects and suggesting a multidisciplinary approach to the ethical and legal implications of ordinary and experimental practices. The book is divided into three parts: the first and second focus on the scientific and clinical implications of neurological tools for DOC patient and infant care. With reference to these developments, the third and final part presents the case for re-evaluating classical ethical and legal concepts, such as authority, informed consent and privacy. Neurotechnology and Direct Brain Communication will appeal to researchers and postgraduate students in the fields of cognitive science, medical ethics, medical technology, and the philosophy of the mind. With implications for patient care, it will also be a useful resource for clinicians, medical centres and health practitioners. (shrink)

Changes in technological and economic aspects of society have impacted on how we understand professional and client relationships. These relationships are constructed in terms of patients/users requiring care, and customers whose complaints have become a yardstick of satisfaction. A consequence of these changes is an interest in the related concepts of emotional labour and emotion work. For nurses, caring for people in illness and in health is central to their work, and it is this aspect of emotion at work that (...) distinguishes nursing from other occupational groups. This paper is concerned with emotion work in a National Health Service Direct (NHS Direct) call centre in the United Kingdom. Drawing upon theoretical perspectives from organizational psychology and sociology it focuses upon the social processes that narrate emotion events in a specific context. It is based on a qualitative study exploring the experience and emotion work of nurses working in a call centre. Issues in caring without the face‐to‐face contact using communication technology were crucial to the way nurses perceived their work. These factors contributed to nurses’ orientation to work and to the way that conflict and dissonance with expectations of callers and managers impacted on nurses’ emotion work. (shrink)

Systematic study of the intersection of ethics consultation services and solid organ transplants and recipients can identify and illustrate ethical issues that arise in the clinical care of these patients, including challenges beyond resource allocation. This was a single-centre, retrospective cohort study of all adult ethics consultations between January 1, 2007, and December 31, 2017, at a large academic medical centre in the north-eastern United States. Of the 880 ethics consultations, sixty (6.8 per cent ) involved solid organ transplant, thirty-nine (...) (65.0 per cent) for candidates and twenty-one (35.0 per cent ) for recipients. Ethics consultations were requested for 4.3 per cent of heart, 4.9 per cent of lung, 0.3 per cent of liver, and 0.3 per cent of kidney transplant recipients over the study period. Nurses were more likely to request ethics consultations for recipients than physicians (80.0 per cent vs 20.0 per cent, p = 0.006). The most common reason for consultation among transplant candidates was discussion about intensity of treatment or goals of care after the patient was not or was no longer a transplant candidate. The most common reason for ethics consultation among transplant recipients was disagreement between transplant providers and patients/families/non-transplant healthcare professionals over the appropriate intensity of treatment for recipients. Very few consultations involved questions about appropriate resource allocation. Ethics consultants involved in these cases most often navigated communication challenges between transplant and non-transplant healthcare professionals and patients and families. (shrink)

Academic health centres have historically treated patients with the most complex of diseases, served as training grounds to teach the next generations of physicians and fostered an innovative environment for research and discovery. The physicians who hold faculty positions at these institutions have long understood how these key academic goals are critical to serve their patient community effectively. Recent healthcare reforms, however, have led many academic health centres to recruit physicians without these same academic expectations and to partner with non-faculty (...) physicians at other health systems. There has been limited transparency in regard to the expertise among the physicians and the academic faculty within these larger entities. Such lack of transparency may lead to confusion among patients regarding the qualifications of who is actually treating them. This could threaten the ethical principles of patient autonomy, benevolence and non-maleficence as patients risk making uninformed decisions that might lead to poorer outcomes. Furthermore, this lack of transparency unjustly devalues the achievements of physician faculty members as well as potentially the university they represent. In this paper, it is suggested that academic health centres have an obligation to foster total transparency regarding what if any role a physician has at a university or medical school when university or other academic monikers are used at a hospital. (shrink)

Pulmonary rehabilitation has demonstrated patients’ physiological and psychosocial improvements, symptoms reduction and health-economic benefits whilst enhances the ability of the whole family to adjust to illness. However, PR remains highly inaccessible due to lack of awareness of its benefits, poor referral and availability mostly in hospitals. Novel models of PR delivery are needed to enhance its implementation while maintaining cost-efficiency. We aim to implement an innovative community-based PR programme and assess its cost-benefit. A 12-week community-based PR will be implemented in (...) primary healthcare centres where programmes are not available. Healthcare professionals will be trained. 73 patients with CRD and their caregivers will compose the experimental group. The control group will include dyads age- and disease-matched willing to collaborate in data collection but not in PR. Patients/family-centred outcomes will be dyspnoea, fatigue, cough and sputum, impact of the disease, emotional state, number of exacerbations, healthcare utilisation, health-related quality of life and family adaptability/cohesion. Other clinical outcomes will be peripheral and respiratory muscle strength, muscle thickness and cross sectional area, exercise capacity, balance and physical activity. Data will be collected at baseline, at 12 weeks, at 3- and 6-months post-PR. Changes in the outcome measures will be compared between groups, after multivariate adjustment for possible confounders, and effect sizes will be calculated. A cost-benefit analysis will be conducted. This study will enhance patients access to PR, by training healthcare professionals in the local primary healthcare centres to conduct such programmes and actively involving caregivers. The cost-benefit analysis of this intervention will provide an evidence-based insight into the economic benefit of community-based PR in chronic respiratory diseases. The trial was registered in the ClinicalTrials. gov U.S. National Library of Medicine, on 10th January, 2019. (shrink)

This paper explains Viktor von Weizsäcker’s Gestaltkreis model as a reinterpretation of Jakob von Uexküll’s Funktionskreis. Also derived from the Funktionskreis is Thure von Uexküll’s Situationskreis model. Both Weizsäcker’s Gestaltkreis and Thure von Uexküll’s Situationskreis have evolved in the context of integrated medicine in Germany throughout the twentieth century. Focusing on the role of language in health and medicine, this paper addresses important concepts associated with the project of integrated medicine in Germany, especially the biographical approach practiced by Viktor von (...) Weizsäcker and developed by Thure von Uexküll through the concept of the biographical organ. While their efforts to reform the practice of medicine and the training of physicians were unsuccessful, recent research in the psychology of language and health and recommendations for more patient-centered communication resonate with the principles underlying Viktor von Weizsäcker’s and Thure von Uexküll’s integrated medicine. (shrink)

Clinical ethics consultations exist to support patients, families and clinicians who are facing ethical or moral challenges related to patient care. They provide a forum for open communication, where all stakeholders are encouraged to express their concerns and articulate their viewpoints. Ethics consultations can be requested by patients, caregivers or members of a patient’s clinical or supportive team. Althoughpatientsand by extension their families (especially in cases of decisional incapacity) are the common denominators in most ethics consultations, these constituents are (...) theleastlikely to request them. At many healthcare organisations in the USA, ethics consultations are overwhelmingly requested by physicians and other clinicians. We believe it is vital that healthcare institutions bridge the knowledge gaps and power imbalances over access to ethics consultation services through augmented policies, procedures and infrastructure. With enhanced education and support, patients and families may use ethics consultation to elevate their voices and prioritise their unique characteristics and preferences in the delivery of their healthcare. Empowering patients and families to request ethics consultation can only strengthen the patient/family–clinician relationship, enhance the shared decision-making model of care and ultimately lead to improved patient-centred care. (shrink)

BackgroundWhile most studies on HIV/AIDS often identify stigmatization and patients’ unwillingness to access health care as critical problems in the control of the pandemic, very few studies have focused on the possible consequences of accessing health care by sero-positives. This paper examines the socio-psychological trauma patients experience in their desire to access health care in two health facilities in the Ashanti Region of Ghana.MethodsThrough participant observation, informal conversation and in-depth interviews, data were collected from health workers and clients of the (...) voluntary counselling and antiretroviral therapy units in the two hospitals.The data gathered were analysed and categorized into themes and supported with illustrative quotes obtained from health workers and clients.ResultsThe study found that the mere presence of a person at the HIV counselling centre or clinic is enough for the person to be labelled as or suspected to be HIV patient. It demonstrates that stigmatization may occur not only in the community but also overtly or covertly, in the health facility itself. Consequently, for many HIV/AIDS patients, access to antiretroviral therapy and treatment of related nosocomial infections are problematic. Besides, the study found that many clients and potential users of services were uncomfortable with the quality of care given by some health workers, especially as they overtly and covertly breached confidentiality about their clients’ health status. This has compelled many patients and potential users of the services to adopt a modus vivendi that provides them access to some care services while protecting their identity.ConclusionThe paper argues that by examining issues relating to privacy and confidentiality in the provision of care for and use of services by seropositives, more light will be shed on the whys of the limited uptake of HIV-related health care services in Ghana. (shrink)

Truth-telling for terminally ill patients is a challenging ethical and social issue for Chinese health care professionals. However, despite the existence of ethical and moral standards for nurses, they frequently encounter moral dilemmas when making decisions about truth-telling to patients with end-stage diseases in China. This article aims to provide ethical strategies for clinical nurses in China regarding truth-telling decisions for terminally ill patients on the basis of their individual autonomy. This article first presents a common case scenario in China (...) and then critically discusses ethical issues related to ethical principles and philosophical theories. The aim is to provide the much needed strategy for truth-telling for nurses who are terminally ill rather than to focus on attitudes toward disclosure. This article focuses on nursing morality, ethics, norms, and philosophy in health care and discusses countermeasures taken by nurses in truth-telling decision-making in combination with Chinese Confucian culture. The analysis identifies key ethical strategies tailored to Chinese nurses’ practices, emphasizing individual autonomy, cultural sensitivity, and family dynamics in truth-telling decisions. The complexity of end-of-life illness requires Chinese nurses to strengthen the communication training needed to deliver bad news, as well as critical and autonomous thinking and good communication skills when implementing patient- and family-centered care, to achieve true delivery of bad news, thereby increasing patient autonomy and promoting more successful collaboration among patients, families, and providers. To improve the quality of care. Chinese nurses should integrate ethical principles with Confucian values to enhance patient-centered communication, respecting autonomy while adapting to cultural nuances in end-of-life care. (shrink)

BackgroundInternationally, patient access to notes is increasing. This has been driven by respect for patient autonomy, often recognised as a primary tenet of medical ethics: patients should be able to access their records to be fully engaged with their care. While research has been conducted on the impact of patient access to outpatient and primary care records and to patient portals, there is no such review looking at access to hospital medical records in real time, nor an ethical analysis of (...) the issues involved in such a change in process.MethodsThis study employed a systematic review framework in two stems, to integrate literature identified from two searches: Medline, CINAHL and Scopus databases were conducted, (for (1) hospitalised patients, patient access to records and its effects on communication and trust within the doctor-patient relationship; and (2) patient access to medical records and the ethical implications identified). The qualitative and quantitative results of both searches were integrated and critically analysed.Results3954 empirical and 4929 ethical studies were identified; 18 papers representing 16 studies were identified for review (12 empirical and 6 ethical). The review reveals a consensus that our current approach to giving information to patients – almost exclusively verbally – is insufficient; that patient access to notes is a welcome next step for patient-centred care, but that simply allowing full access, without explanation or summary, is also insufficient. Several ethical implications need to be considered: increased information could improve patient trust and knowledge but might transfer an (unwelcome) sense of responsibility to patients; doctors and patients have conflicting views on how much information should be shared and when; sharing written information might increase the already significant disparity in access to health care, and have unforeseen opportunity costs. The impact on medical practice of sharing notes in real time will also need to be evaluated.ConclusionsThe review presents encouraging data to support patient access to medical notes. However, sharing information is a critical part of clinical practice; changing how it is done could have significant empirical and ethical impacts; any changes should be carefully evaluated. (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)

The introduction of nurse‐led telephone helplines for patients to have access to information and advice has led to the development of a new kind of practise for nurses. This study focuses on the ways NHS Direct (NHSD) nurses construct a nursing identity and shape their work in a call‐centre environment. The empirical findings are drawn from a study investigating the impact of NHSD on professional nursing issues that was part of a wider evaluation of the service in South Wales, UK. (...) Data were gathered from responses to free text questions included in a questionnaire sent to nurses in three NHSD sites. Further data were collected from focus groups held with NHSD nurses. The nurses defend their identity as nurses rather than call‐centre workers. The discourses of the nurses show a strong alignment with the traditional values of nursing, encompassing holistic and empathetic practise that has moved with the nurses across locales. We argue that the nurses frame a nursing identity in NHSD around the importance of previous experience and claim to practise holistic nursing. However, the development of new skills and adaptation of old skills in response to the demand of NHSD work challenges normative notions of traditional ‘hands‐on’ models of practise and indicates a possible movement towards a cognitive model of nursing based upon knowledge, analytical and communication skills that reflects the transformative and dynamic nature of professional identity and boundaries. (shrink)

Communicating an unfavourable prognosis while maintaining patient hope represents a critical challenge for healthcare professionals. Duty requires respect for the right to patient autonomy while at the same time not doing harm by causing hopelessness and demoralisation. In some cases, the need for therapeutic privilege is discussed. The primary objectives of this study were to explore HPs’ perceptions of hope in the prognosis communication and investigate how they interpret and operationalise key ethical principles. Sixteen qualitative semistructured interviews with HPs (...) from different positions and experience, including doctors and nurses in four different departments, were conducted in the Ticino Cantonal Hospital, Switzerland. The interviews were recorded, transcribed verbatim and analysed using thematic analysis. HPs defined prognosis and patient hope as interdependent concepts related to future perspectives for subjective quality of life. Two main factors allow HPs to maximise the benefits and minimise the harm of their communication: respecting the patient’s timing and sharing the patient’s wishes. Time is required to reframe needs and expectations. Furthermore, communication needs to be shared by HPs, patients and their relatives to build common awareness and promote a person-centred approach to prognosis. In this process, interprofessional collaboration is key: doctors and nurses are complementary and can together guarantee that patients and relatives receive information in the most appropriate form when they need it. Organisational aspects and the HPs’ emotional difficulties, particularly in coping with their own despair, are barriers to effective communication that need further investigation. (shrink)

Entrustable Professional Activities (EPAs) are widely utilized in competency-based medical education (CBME) to assess clinical readiness, yet their application in bioethics remains less explored. This study introduces Entrustable Professional Ethical Actions (EPEAs) to address the ethical complexities faced by medical professionals transitioning to residency or postgraduate training. A structured framework for EPEAs was developed through a systematic review of bioethics literature and the UNESCO Universal Declaration on Bioethics and Human Rights. Competencies were categorized under seven domains, including ethical decision-making, patient-centered (...) communication, and sustainability. Using these competencies, ten core EPEAs were formulated with measurable milestones for entrustment. Validation involved an international panel of 35 experts, who evaluated the EPEAs through a 47-item online questionnaire. Consensus was defined as ≥ 80% agreement on relevance, clarity, and feasibility, with iterative revisions informed by expert feedback. Validation demonstrated high global consensus, with 86.49% of experts rating the EPEAs as highly relevant, 82.86% agreeing on milestone differentiation, and 81.76% endorsing measurability. Content validity indices (S-CVI/AVE: 0.80, I-CVI: 0.85, S-CVI/UA: 0.92) and reliability (ICC: 0.87) confirmed the robustness of the framework. The final set includes ten EPEAs covering critical domains such as informed consent, privacy, confidentiality, shared decision making, equity, sustainability etc. The EPEAs represent a pioneering framework for integrating bioethical decision-making into medical education. By aligning with global ethical principles, these actions equip trainees to navigate complex moral dilemmas in clinical practice while fostering trust among educators, peers, and patients. (shrink)

BackgroundThe Patient-Centered Outcomes Research Institute is obligated to peer review and to post publicly “Final Research Reports” of all funded projects. PCORI peer review emphasizes adherence to PCORI’s Methodology Standards and principles of ethical scientific communication. During the peer review process, reviewers and editors seek to ensure that results are presented objectively and interpreted appropriately, e.g., free of spin.MethodsTwo independent raters assessed PCORI peer review feedback sent to authors. We calculated the proportion of reports in which spin was identified (...) during peer review, and the types of spin identified. We included reports submitted by April 2018 with at least one associated journal article. The same raters then assessed whether authors addressed reviewers’ comments about spin. The raters also assessed whether spin identified during PCORI peer review was present in related journal articles.ResultsWe included 64 PCORI-funded projects. Peer reviewers or editors identified spin in 55/64 submitted research reports. Types of spin included reporting bias, inappropriate interpretation, inappropriate extrapolation of results, and inappropriate attribution of causality. Authors addressed comments about spin related to 47/55 of the reports.Of 110 associated journal articles, PCORI comments about spin were potentially applicable to 44/110 articles, of which 27/44 contained the same spin that was identified in the PCORI research report. The proportion of articles with spin was similar for articles accepted before and after PCORI peer review.DiscussionJust as spin is common in journal articles and press releases, we found that most reports submitted to PCORI included spin. While most spin was mitigated during the funder’s peer review process, we found no evidence that review of PCORI reports influenced spin in journal articles. Funders could explore interventions aimed at reducing spin in published articles of studies they support. (shrink)

Consent remains a crucial, yet challenging, cornerstone of clinical practice. The ethical, legal and professional understandings of this construct have evolved away from a doctor-centred act to a patient-centred process that encompasses the patient’s values, beliefs and goals. This alignment of consent with the philosophy of shared decision-making was affirmed in a recent high-profile Supreme Court ruling in England. The communication of information is central to this model of health care delivery but it can be difficult for doctors to (...) gauge the information needs of the individual patient. The aim of this paper is to describe ‘core information sets’ which are defined as a minimum set of consensus-derived information about a given procedure to be discussed with all patients. Importantly, they are intended to catalyse discussion of subjective importance to individuals. The model described in this paper applies health services research and Delphi consensus-building methods to an idea orginally proposed 30 years ago. The hypothesis is that, first, large amounts of potentially-important information are distilled down to discrete information domains. These are then, secondly, rated by key stakeholders in multiple iterations, so that core information of agreed importance can be defined. We argue that this scientific approach is key to identifying information important to all stakeholders, which may otherwise be communicated poorly or omitted from discussions entirely. Our methods apply systematic review, qualitative, survey and consensus-building techniques to define this ‘core information’. We propose that such information addresses the ‘reasonable patient’ standard for information disclosure but, more importantly, can serve as a spring board for high-value discussion of importance to the individual patient. The application of established research methods can define information of core importance to informed consent. Further work will establish how best to incorporate this model in routine practice. (shrink)

In this paper, I examine the rhetoric employed by court judgements, with a particular emphasis on the narrative construct of the ‘passive patient’. This construction advances and reinforces paternalistic values, which have scant regard for the patients’ preferences, values, or choices within the legal context. Further, I critique the rhetoric employed and argue that the use of this rhetoric is the basis for a precedent that limits the understanding and respect of patients. Through this paper, I present the contemporary use (...) of the ‘passive patient’ construct in the context of the Indian legal system and describe how such constructions have become a source of normative justification for legal reasoning that jeopardizes the patient’s agency. I argue for the primacy of ‘respect for persons’ within Indian law and the need to treat each patient as a person who has agency, preferences, and values during clinical interactions. I conclude by suggesting that laws that adopt narratives that acknowledging the significance of patient engagement and the relevance of effective communication during clinical encounters would help cultivate a culture of patient-centred care, by moving beyond the rhetoric of ‘passive patient’ and the ‘health/choice’ dichotomy. (shrink)

In vitro fertilisation (IVF) daily practice reveals that couples are willing to take greater risks than doctors if there is a higher chance of pregnancy. Arising from this is a frequently addressed issue regarding the embryo transfer strategy: single or double embryo transfer? The dilemma is faced by patients, as well as physicians, who are caught between the possibility of no pregnancies at all and facing the prospect of iatrogenic twin gestation. How could the couple's preferences concerning how many children (...) they would like be taken into account in determining the number of embryos transferred? How should the physician exercise his medical responsibility towards his patients and the unborn child? An effective approach could be to enhance a couple’s autonomy by advocating a medical beneficence that incorporates patients’ values. This can be achieved through a case-by-case approach in a deliberative process of decision-making which includes real patient-centred communication. (shrink)

A collegial procedure refers to the fact that, before making a delicate medical decision, the opinion of the entire care team responsible for the patient is sought, including nurses and orderlies, among others. The Claeys-Leonetti end-of-life law (2016) enshrines this in French law as mandatory when implementing deep and continuous sedation until death (DCSD). The aim of the study was to take stock of the awareness of this aspect of the law among all the healthcare staff of a cancer institute (...) and to identify how collegiality was established for a DCSD decision, depending on the department. We administered an anonymous online questionnaire to all those involved in healthcare (knowledge of the Claeys-Leonetti Act), and then met healthcare workers from the various departments in discussion groups (managers, nursing staff and orderlies) or in individual interviews (doctors). The results show that young healthcare staff (with less than 5 years’ experience) are more familiar with the law, across all professions, and that nurses and orderlies are more likely to assert their rights than doctors. We report on the diversity of the implementation of collegiality for sedation decisions, in terms of formalisation, standardisation and inter-professionalisation. We conclude that the implementation of collegiality in advance of a decision broadens the methods of multi/inter-professional communication and helps to alleviate the suffering of patients, doctors and care givers. (shrink)

The dual-continua model of mental health provides a contemporary framework for conceptualising and operationalising mental health. According to this model, mental health is distinct from but related to mental illness, and not the opposite or merely the absence of psychopathology symptoms. To examine the validity of the dual-continua model, previous studies have either applied variable-based analysis such as confirmatory factor analysis, or used predetermined cut-off points for subgroup division. The present study extends this contribution by subjecting data from an African (...) sample to both CFA and latent class analysis to test the dual-continua model in Africa. We applied CFA separately for the Mental Health Continuum—Short Form and Patient Health Questionnaire—9 ; and LCA on combined item responses. College students from Ghana, Kenya, Mozambique, and South Africa completed the MHC-SF and PHQ-9. With minor modifications to the measurement models, the CFA results of this study confirm the three-factor structure of the MHC-SF, and a unidimensional solution for the PHQ-9. LCA results show the presence of three distinct latent classes: languishing with moderate endorsement of depressive symptoms, flourishing with low endorsement of depressive symptoms, and moderate mental health with high endorsement of depressive symptoms. These findings further contribute to affirming the evidence for the dual-continua model of mental health, with implications for the assessment of mental health, to inform policy, practise, and future research in community and clinical settings in Africa. (shrink)

Patient-and-family-centered care (PFCC) is critical in end-of-life (EOL) settings. PFCC serves to develop and implement patient care plans within the context of unique family situations. Key components of PFCC include collaboration and communication among patients, family members and healthcare professionals (HCP). Ethical challenges arise when the burdens (e.g., economic, psychosocial, physical) of family members and significant others do not align with patients’ wishes. This study aims to describe the concept of vulnerability and the ethical challenges faced by HCPs in (...) these circumstances. Further, it assesses the contribution of clinical ethics consultation (CEC) in assisting HCPs to face these difficult ethical conundrums. Two clinical cases are analyzed using the Circle Method of CEC. The first regards the difficulty faced by the doctor in justifying treatments previously agreed upon between the patient and his/her friends. The second regards the patient’s concern about being a burden on their family. Family burdens in EOL settings challenge PFCC in that patient autonomy may be disregarded. This compromises shared decision-making between the patient, family and HCPs as a core component of PFCC. In their ability to promote a collaborative approach, CECs may assist in the successful implementation of PFCC. (shrink)

Next SectionPurpose The importance of recognising patient dignity has been realised in recent years. Despite being a central phenomenon in medicine, dignity is a controversial concept, the definition of which in healthcare centres is influenced by a multitude of factors. The aim of this study was to explore the perspective of Iranian patients on respect for their dignity in healthcare centres. Methods With the use of purposeful sampling, 20 patients were interviewed over an 11-month period in three educational hospitals affiliated (...) with the government. They were questioned about experiences related to respect for their dignity during their hospital encounter. Data were processed by qualitative content analysis. Results Data analysis identified nine categories and four themes. Respondents expressed their expectations and attitudes about dignity by the following themes: seeking a haven; disrespecting privacy; communicating in a vacuum; and disregard for secondary caregivers. They described how respect for their privacy, effective communication, access to facilities, and a regard for the requirements of their companions made them feel that their dignity had been conserved. Conclusions The findings indicate that almost no patient is satisfied with the quality of services with respect to maintenance of their dignity. Regardless of their hospital location and state of health, most participants had common complaints. These findings agree with the literature and confirm that grounds should be provided for conserving dignity in the healthcare system. To reach this goal, healthcare professionals should be aware of the factors that violate or preserve dignity from the patient's perspective. (shrink)

The current international healthcare focus on ensuring the perspectives and needs of individual persons, families or communities are met has led to the core tenet of person‐centred care for all. The nurse–patient relationship is central to the provision of care, and enhancing this relationship to ensure trust and respect supports optimal care outcomes for those accessing healthcare services. Engaging authentically is one of the recognised key approaches in person‐centred practice, and this scoping review of the literature aims to gain an (...) understanding of the role this process plays in developing effective relationships between nurses and the people they care for. A systematic search of databases and grey literature was undertaken, and twenty‐one research papers met the inclusion criteria. A thematic analysis revealed four themes: ‘getting to know the patient as a person’, ‘the complexity of relationship building—it takes time’, ‘the nurse: characteristics and behaviours that support the nurse–patient relationship’ and ‘the patient voice’. Nurses and patients both benefit from effective relationships, feeling valued and experiencing greater satisfaction with care. Key elements of engaging authentically were revealed as a nurse–patient relational process through this literature review; however, further research is needed to gain a greater understanding of this concept. (shrink)

It describes and explains the patient-centered model examining and evaluating qualitative and quantitative research. It comprehensively covers the evolution and the six interactive components of the patient-centered clinical method, taking the reader through the relationships between the patient and doctor and the patient and clinician. All the editors are professors in the Department of Family Medicine at the University of Western Ontario, London, Canada.

Advanced AI systems are rapidly making their way into medical research and practice, and, arguably, it is only a matter of time before they will surpass human practitioners in terms of accuracy, reliability, and knowledge. If this is true, practitioners will have a prima facie epistemic and professional obligation to align their medical verdicts with those of advanced AI systems. However, in light of their complexity, these AI systems will often function as black boxes: the details of their contents, calculations, (...) and procedures cannot be meaningfully understood by human practitioners. When AI systems reach this level of complexity, we can also speak of black-box medicine. In this paper, we want to argue that black-box medicine conflicts with core ideals of patient-centered medicine. In particular, we claim, black-box medicine is not conducive for supporting informed decision-making based on shared information, shared deliberation, and shared mind between practitioner and patient. (shrink)

The healing and preventive powers of people's health resources and self-assessed knowledge have so far been grossly underestimated in medicine. In this article, we call attention to ethical and epistemological dilemmas related to knowledge, values, communication, and autonomy embedded in the prevailing risk-oriented epidemiology, and suggest a patient-centred salutogenetic approach to promote a better balance between resources and risks in medicine. Identification and intervention upon risk factors can provide hypotheses about origins of disease and predict and sometimes prevent disease (...) at a group level. However, there are several pitfalls related to this perspective concerning causal factors, group level based possibilities, adequate end points for intervention, informed consent, and medicalization, especially in the individualized context of the clinical encounter. By introducing a salutogenic perspective, we urge to shift the attention toward resources, agency and strength, which may counteract risk of disease and empower the patient. Talk can mediate oppression as well as empowerment. A communicative key question approach, and self-assessed health resources identified through this strategy, are briefly presented as examples of empowerment through dialogue. (shrink)