It is commonplace that care should be patient-centered. Nevertheless, no universally agreed-upon definition of patient-centered care exists. By consequence, the relation between patient-centered care as such and ethical principles cannot be investigated. However, some research has been performed on the relation between specific models of patient-centered care and ethical principles such as respect for autonomy and beneficence. In this article, I offer a detailed case study on the relationship (...) between specific measures of patient-centered care and the ethical principle of respect for autonomy. Decision Quality Instruments (DQIs) are patient-centered care measures that were developed by Karen Sepucha and colleagues. The model of patient-centered care that guided the development of these DQIs pays special attention to the ethical principle of respect for autonomy. Using Jonathan Pugh’s theory of rational autonomy, I will investigate how the DQIs relate to patient autonomy. After outlining Pugh’s theory of rational autonomy and framing the DQIs accordingly (Part I), I will investigate whether the methodological choices made while developing these DQIs align with respect for autonomy (Part II). My analysis will indicate several tensions between DQIs and patient autonomy that could result in what I call “structural paternalism.” These tensions offer us sufficient reasons, especially given the importance of the ethical principle of respect for autonomy, to initiate a more encompassing debate on the normative validity of Decision Quality Instruments. The aim of the present paper is to highlight the need for, and to offer a roadmap to, this debate. (shrink)

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

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 (...) class='Hi'>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)

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)

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)

This discussion paper aims to explore potential ethical and moral implications of (patient) centredness in nursing and healthcare. Healthcare is experiencing a philosophical shift from a perspective where the health professional is positioned as the expert to one that re‐centres care and service provision central to the needs and desires of the persons served. This centred approach to healthcare delivery has gained a moral authority as the right thing to do. However, little attention has been given to its (...) moral and ethical theoretical grounding and potential implications for nurses, persons served and the healthcare system. Based upon a review of academic and grey literature, centredness is proposed as a value‐laden concept in nursing inquiry. Potential moral and ethical implications of centredness on nurses/healthcare providers, persons served and the healthcare system are discussed. These challenges are then considered within the context of normative and relational ethical theories. These perspectives may offer guidance relative to how one should act in those circumstances as well as an understanding as to how interdependency and engagement with the other person(s) can help navigate the challenges of a centred care approach. Viewing centredness through an ethical theoretical lens provides a valuable discourse to nursing in efforts to expand the knowledge base and integrate centred approaches into practice and policy. (shrink)

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)

In recent years, hospitals, clinics, and professional organizations have with increasing frequency pledged their commitment to “patient-and family-centered care”. The movement toward PFCC is especially pronounced in pediatrics, where the American Academy of Pediatrics has a long-held, explicit commitment to PFCC. However, the unified movement toward PFCC obscures differing conceptions of its purpose. First, patient-centered care, as opposed to provider- or disease-centered care, focuses on increasing patient involvement in care to (...) accomplish two related, but distinct objectives: improving health outcomes and better respecting patients’ wishes. The Institute of... (shrink)

Background Mental health nurses advocate for patients through a person-centered approach because they care for people experiencing mental distress who tend to be limited to exercising their human rights and autonomy through interpersonal relationships. Therefore, it is necessary to provide high-quality person-centered care for these patients by identifying the influencing factors. Aim This study aims to identify the factors affecting mental health nurses in performing person-centered care for patients. Research design This study had a (...) cross-sectional, descriptive-correlational survey design. Participants and method Nurses ( N = 166) working at psychiatric wards in Korea completed an online questionnaire on moral sensitivity, attitudes toward people with mental illness, and person-centered care. The t-test and stepwise multiple regression analysis were used. Ethical considerations Ethical approval for the study was obtained from the relevant ethics committee. Findings Moral sensitivity was a significant factor correlating with the provision and perception of person-centered care. Attitudes toward patients had no effect on person-centered care. The predictor variables for the provision of person-centered care (R2 = 0.247) were moral sensitivity (β = 0.33), having a professional qualification (β = 0.19), marital status (β = 0.18), and closed ward (β = −0.15). The predictor variables for the perception of person-centered (R2 = 0.150) care were closed ward (β = −0.25), moral sensitivity (β = 0.23), and marital status (β = 0.18). Discussion and conclusion Mental health nurses can strengthen person-centered care by improving moral sensitivity related to the ethical aspect of nursing and professional competence to address the complex needs of patients. Person-centered care needs to be applied more carefully in closed wards where human rights issues may arise. Through these efforts, the dignity of patients can be protected. (shrink)

Despite enthusiasm for patient-centered care, the practice of patient-centered care is proving challenging. Further, it is curious that the literature about this subject does not explicitly address patient autonomy, since (1) patients guide care in patient-centered care, and (2) respect for patient autonomy is a prominent health-care value. We argue that by explicitly adopting a relational conception of autonomy as an essential component, patient-centered (...) class='Hi'>care becomes more coherent, is strengthened, and could help practitioners to make better use of a principle of respect for autonomy. Hence, its use appears promising to narrow the theory–practice gap. (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 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)

BackgroundDespite the recognition that developing artificial intelligence (AI) that is trustworthy is necessary for public acceptability and the successful implementation of AI in healthcare contexts, perspectives from key stakeholders are often absent from discourse on the ethical design, development, and deployment of AI. This study explores the perspectives of birth parents and mothers on the introduction of AI-based cardiotocography (CTG) in the context of intrapartum care, focusing on issues pertaining to trust and trustworthiness.MethodsSeventeen semi-structured interviews were conducted with birth (...) parents and mothers based on a speculative case study. Interviewees were based in England and were pregnant and/or had given birth in the last two years. Thematic analysis was used to analyze transcribed interviews with the use of NVivo. Major recurring themes acted as the basis for identifying the values most important to this population group for evaluating the trustworthiness of AI.ResultsThree themes pertaining to the perceived trustworthiness of AI emerged from interviews: (1) trustworthy AI-developing institutions, (2) trustworthy data from which AI is built, and (3) trustworthy decisions made with the assistance of AI. We found that birth parents and mothers trusted public institutions over private companies to develop AI, that they evaluated the trustworthiness of data by how representative it is of all population groups, and that they perceived trustworthy decisions as being mediated by humans even when supported by AI.ConclusionsThe ethical values that underscore birth parents and mothers’ perceptions of trustworthy AI include fairness and reliability, as well as practices like patient-centered care, the promotion of publicly funded healthcare, holistic care, and personalized medicine. Ultimately, these are also the ethical values that people want to protect in the healthcare system. Therefore, trustworthy AI is best understood not as a list of design features but in relation to how it undermines or promotes the ethical values that matter most to its end users. An ethical commitment to these values when creating AI in healthcare contexts opens up new challenges and possibilities for the design and deployment of AI. (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)

Person‐centred care is a relatively new orthodoxy being implemented by modern hospitals across developed nations. Research demonstrating the merits of this style of care for improving patient outcomes, staff morale and organizational efficiency is only just beginning to emerge. In contrast, a significant body of literature exists showing that attainment of person‐centred care in the acute care sector particularly, remains largely aspirational, especially for older people with cognitive impairment. In previous articles, we argued that nurses (...) work constantly to reconcile prevailing constructions of time, space, relationships, the body and ethics, to meet expectations that the care they provide is person‐centred. In this article, we explore key concepts of neo‐liberal thought which forms an important back‐story to the articles. Economic concepts, “efficiency” and “freedom” are examined to illustrate how nurses work to reconcile both the repressive and productive effects of economic power. We conclude the article by proposing a new research agenda aimed at building a more nuanced understanding of the messy actualities of nursing practice under the influences of neo‐liberalism, that illuminates the compromises and adaptations nurses have had to make in response to economic power. (shrink)

The literature on the question of life’s meaning has primarily focused on agent-centred paths to meaningfulness. This path involves an individual making a concerted effort towards achieving meaningfulness in life. Thus, even in defining meaning or presenting a concept of meaning, philosophers often approach such a description from an agent-centred perspective. In this essay, I articulate a patient-centred approach to meaning particularly from the African philosophical perspective. Drawing chiefly from African relational viewpoints, I develop the “patient-centred variable”, (...) which ought to be contemplated by any definition of what meaningfulness entails. This patient-centred variable is the idea that a life can be meaningful (at least, momentarily) if it receives from other people acts that are considered (within a particular societal context) acts of love, communion and/or kindness, which transcend normal relationality among human beings and elicit personal feelings of esteem and worthiness. I begin by extracting clues from African metaphysics and from practical ethical values, which all suggest the plausibility of received meaning. Then I conceptualise what I call the patient-centred variable (PcV), and present it as a plausible and necessary addition (not a stand-alone concept of meaning) to any conceptual analysis of meaning. (shrink)

Background Recently, palliative care is increasingly important, with an emphasis on the process of dying with dignity. However, nurses who care for such patients experience the associated ethical dilemmas. Objective To explore the meaning of nurses’ experiences in dealing with ethical dilemmas in relation to palliative sedation. Research design A qualitative research design was employed with a thematic analysis approach. Participants and research context Using purposive sampling, 15 nurses, working at palliative care units for at least 1 (...) year, were recruited as participants. Data were collected using unstructured in-depth interviews, and data collection and analysis was performed simultaneously. Ethical considerations Ethical approval was obtained from the authors’ institutional review board. All participants provided informed consent. For the face-to-face interview, the South Korean standard COVID-19 quarantine guidelines, such as mandatory masking and social distancing, were followed. Results Dilemmas raised by patients, were related to concerns about appropriate drug dose; dilemmas raised by nurses, were related to passive care, sense of guilt for failure to predict death, and colleague’s disrespectful attitudes toward patients; dilemmas from patients’ families were related to demands for palliative sedation and reversal of those demands. Care actions to deal with ethical dilemmas comprised evidence-based care, person-centered thinking, reflecting on the death situation, compassion, providing explanation and help to family members. Conclusion Nurses’ ethical dilemmas were pre-dominantly influenced by themselves, rather than by the patients or their families, especially if they felt they could not do their best for patients. The core concept of care actions to deal with the ethical dilemmas, was person-centered care and compassion. Then, how patients and their family members perceive person-centered care and compassion, should be further explored to improve palliative sedation. (shrink)

Patient-centered care is now recognized as a clinical method and ideal model for patient – health professional relationships, and many definitions have influenced its evolution. Overall the patient-centered care literature has provided relatively little to define patient-centered care at the level of the patient-professional relationship. Additionally, patient-centered care lacks grounding in ethical theory. This thesis asserts that theoretical concepts from the ethics of care can (...) provide a stronger conceptual basis for patient-centered care.This thesis begins with a critical interpretive review of the patient-centered care literature, yielding 12 articles that previously introduced new theoretical and definitional work on patient-centered care and patient-centered communication. Six common themes and ideas were discovered, and include Engaging the Patient as a Whole Person, Recognizing and Responding to Emotions, Fostering a Therapeutic Alliance, Promoting an Exchange of Information, Sharing Decision Making, and Enabling Self-Management and Patient Navigation. These elements were then compared to key elements of the ethics of care. This thesis argues that feminists have good reason to consider care as a type of moral duty, and it describes how this duty functions. This thesis also argues that a duty to care is triggered when caregivers are presented with particular substantive forms of vulnerability. Specifically, this thesis argues that vulnerable subjects whose constitutive needs are at risk require particular moral obligations. The links between the ethics of care and patient-centered care are discussed, including how an ethics of care response ought to function in the health care context. Finally, the cases of J.J. and Makayla Sault, two aboriginal girls who refused chemotherapy in favour of traditional aboriginal healing practices, are analyzed. This thesis offers a short scoping review of the bioethics discourse surrounding these cases. A review of this discourse revealed several common themes, which included the peripheral importance of culture and history, the equating of best interests with survival, the supremacy of science-based medicine, and the impartial application of ethical principles. This thesis recommends that health care professionals apply an ethics of care approach to similar ethical dilemmas in the future, which involves shifting one's ethical focus to the central relationships of the case, understanding the unique perspective of the patient's narrative, and promoting a care-based rather than a justice-based approach to problem-solving. (shrink)

Burnout among physicians, nurses, and students is a serious problem in U.S. healthcare that reflects inattentive management practices, outmoded images of the “good” provider as selflessly ignoring the care of the self, and an overarching rubric of Patient Centered Care that leaves professional self-care out of the equation. We ask herein if expanding PCC to Patient and Professional Centered Care would be a useful idea to make provider self-care an explicit part (...) of mission statements, a major part of management strategies and institutional goal setting, and of educational programs. We offer several practical suggestions for PPCC implementation, including structuring healthcare systems so as to nurture professional meaning, integrity, and inter-personal reflective emotional processing as a buffer against burnout and as a key to better patient care. It should not bring into question the primacy of practitioner commitment to the good of patients, nor should it be taken to suggest in any way a shift in focus away from patients’ values and respect for patient autonomy. PPCC asserts that the respect for patient’s values and autonomous choices properly remains the ethical benchmark of modern healthcare systems, along with altruistic professional commitment to the optimal care of patients. However, it enunciates an explicit commitment to structuring systems that allow for and actively encourage the professional well-being and wellness upon which good patient care depends. (shrink)

This article addresses some critical aspects of the relationship between aesthetic medicine (AM) and ethics and proposes a possible deontological ethical line to pursue based on current practices. The role of AM has always been controversial and suffers from unclear practical and moral boundaries, even within academic settings, since it aims to improve the appearance of individuals, not to cure a disease. Today, it is essential and pertinent to discuss these issues, as AM specialists are dealing with a growing (...) and increasingly demanding patient population that has undergone profound evolution in recent years. Current challenges within the field of AM include a lack of global uniformity concerning the education of AM specialists, an increasing number of physicians practicing AM with diverse training backgrounds, the spread of AM being practiced outside of medical practice or hospital settings, and the influence of social media where the success is modelled and dictated by the identification of a youthful appearance). By the field of action enriched by technologies that aim not only at enhancement per se but also at the preservation and regeneration of tissues, it is necessary to establish an active multidisciplinary discussion on the definition of shared ethical limits. This discussion would allow AM to fully reclaim its identity as a specialty that aims to improve patient well-being whilst maintaining respect for patient aesthetic harmony, the expertise of specialists who practice AM, the essential role of safety, and awareness of the importance of a confidential doctor−patient relationship. (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.

Many clinical ethics support services do not involve patients. This is surprising because of the broad commitment to provide patient-centered healthcare. Clinical ethics support services are a component of the healthcare system and have an influence on patient care, and should therefore align with the regulatory and ethical requirements of patient-centered care, just process and cultural competence. First, in order to achieve good patient care, it is essential to involve (...) patients in making their own healthcare decisions. Second, just ethical deliberation requires that the deliberating parties have access to complete, accurate and unbiased information – this is best achieved through direct patient input. These arguments are especially compelling in the case of non-dominant cultural and ethnic groups. Here, we argue that when a clinician refers a case to a clinical ethics support services for consideration, and that case involves a conflict between the views or values of the clinician and the patient, the patient is entitled to, at a minimum: (a) be informed of the referral; (b) have the opportunity to speak directly to the clinical ethics support services prior to deliberation; (c) be provided with any opinion directly from the clinical ethics support services; and (d) have the opportunity to speak to a clinical ethics support services member after the deliberation. We use New Zealand as a case study to support and extrapolate the ethical principles and the minimum patient involvement requirements. We draw on our empirical research with senior doctors at a tertiary New Zealand hospital. Clinicians in our study indicated that they would feel bound by clinical ethics support service advice and that the clinical ethics support service has a significant impact on patient care in the case it reviews. (shrink)

Bioethics mediation training offers knowledge and skills valuable for clinical ethics consultants who are engaged in high conflict situations. Furthermore, clinicians with this training can support organizational efforts to create a culture that is centered on the values, needs, and care preferences of patients and their families, rather than on those of the clinician or organization. Patientcenteredness is a hallmark of quality and an essential component for patients’ safety. Clinicians with mediation training have the communication skills to (...) address the myriad needs of patients and their loved ones, needs that are challenging to meet in inpatient hospital settings. The author illustrates principles of mediation such as validating patients’ emotions, revealing the interests of all stakeholders, and shaping a shared solution to demonstrate how these skills have broad applicability in patient care settings. (shrink)

Patient-Centered Care and Cultural Practices: Process and Criteria for Evaluating Adaptations of Norms and Standards in Health Care Institutions Content Type Journal Article Pages 327-339 DOI 10.1007/s10730-009-9115-8 Authors Matthew R. Hunt, McMaster University Department of Clinical Epidemiology and Biostatistics Montreal Canada Journal HEC Forum Online ISSN 1572-8498 Print ISSN 0956-2737 Journal Volume Volume 21 Journal Issue Volume 21, Number 4.

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)

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

The 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)

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)

Over the past decade or so, the predominant patient-centered ethos in American bioethics has come under attack by critics who claim that it is morally deficient in certain respects, particularly when viewed in the context of acute-care decisionmaking. One line of criticism has been that the current ethic of patient autonomy gives an individual competent patient far too much decisional authority over the terms of his own treatment so that the patient is at complete (...) liberty to neglect the ways in which his medical decisions can drastically and negatively affect the lives of other family members. Given that family members must help shoulder the financial, emotional, and rehabilitative burdens involved in the patient's care, it has been argued that they too have a legitimate interest in choosing what sort of medical treatment the patient eventually receives. Another closely related line of criticism is that the prevailing focus on patient autonomy gives short shrift to the moral significance of the family as a genuine community. Echoing a view of the person advanced by most communitarian political theorists, some commentators have argued that the patient comes to the clinic so thoroughly embedded in a complex web of familial relationships and obligations that it does not make sense to identify him as the only person in the family to make decisions about treatment. (shrink)

Since the 1970’s epidemiological measures focusing on “health-related quality of life” or simply “quality of life” have figured increasingly as endpoints in clinical trials. Before the 1970’s these measures were known, generically, as performance measures or health status measures. Relabeled as “quality of life measures” they were first used in cancer trials. In the early 2000’s they were relabeled again as “patient-reported outcome measures” or PROMs, in their service to the FDA to support drug labeling claims. To the limited (...) degree that the philosophical literature addresses these measures, it tends to associate them with two major theories of well-being: subjective well-being and the capabilities approach. In this paper, I argue that philosophers ought to treat quality of life measures/proms as a distinct from these theories. I argue that quality of life/proms serve healthcare as vehicles for patient-centered care and this has important consequences for how we theorize these measures. To this end, two requirements set them apart from measures of subjective well-being and the capabilities approach: quality of life/proms need to be patient-directed and inclusive. (shrink)

Empowerment in healthcare is becoming increasingly popular, including in obstetrics, because of its benefits for both individual health and health promotion. Many authors and organizations, such as the World Health Organization, advocate it as a means of engaging communities in the adoption of health-promoting behaviors and fostering patient-centered care. It aims to enable patients to assert their decisions and choices while respecting their personal values. This desire to respect the uniqueness and autonomy of each individual echoes a (...) number of ethical principles and theories. In this article, the authors aim to answer the question, How can the concept of empowerment in healthcare contribute to bioethics? They argue that it has important links with feminist bioethics, notably the theory of relational autonomy, as well as with the capability theory of economist and philosopher Amartya Sen. (shrink)

This article explores an example of person-centred care: the work of so-called renal care coordinators. The empirical basis of the article consists of qualitative interviews with renal care coordinators, alongside participant observations of their patient interactions. During the analyses of the empirical material, I found that that one of the coordinators’ most fundamental ambitions is to get to know who the patient is. This is also a central tenet of person-centred care. The aim of (...) the article is not only to argue for the plausibility of this tenet, but also, and more importantly, to highlight and explore its implications in the context of healthcare, through the example of renal care coordination. By drawing on the philosophy of Hannah Arendt, the article shows that the disclosure of who the patient is that takes place in person-centred care requires speech and action, which are modes of human activity that initiate processes characterized by unpredictability, uncertainty, and irreversibility. This unpredictability, uncertainty, and irreversibility, found to be inherent in person-centred care, is then discussed in relation to the pursuit of certainty characterizing contemporary evidence-based medicine. At the end of the article the conclusion is drawn that, if healthcare is to be person-centred, it must find ways of accommodating the contradictory pursuits of certainty and uncertainty found in evidence-based medicine and person-centred care respectively. (shrink)

Background Home care nurses are central in providing holistic and compassionate care to patients in home-based palliative care. Ethical caring competency is essential for home care to sustain nurses’ integrity in the face of moral adversity. Interprofessional collaboration is vital for ensuring ethical decision-making and providing patient-centered care in home-based palliative care settings. Aim This study explored the predictive roles of interprofessional collaboration and moral resilience on ethical caring competency among home (...) class='Hi'>care nurses in home-based palliative care. Methods A cross-sectional survey of 400 nurses was conducted from October to December 2023, utilizing standardized scales to measure interprofessional collaboration, moral resilience, and ethical caring competency. A convenience sample of 400 home care nurses was also included in this study. Correlation and linear regression analysis were used to clarify the associative and predictive findings. Ethical Considerations Ethical approval from the ethics committee, institutional permission, and informed consent from the participants were obtained for data collection. Results Correlation analysis showed significant positive correlations between the ethical caring competency, interprofessional collaboration, and moral resilience constructs, with coefficients ranging from 0.482 to 0.967. Linear regression revealed that management of collaborative systems and total moral resilience significantly predict ethical caring competency, explaining 14.6% and 36.6% of its variance, respectively. Other variables, such as the effects of collaboration and communication, did not significantly influence ethical caring competency. Conclusion The study highlights the significant impact of interprofessional collaboration, particularly the management of collaborative systems and moral resilience, on enhancing ethical caring competency among nurses. Implications Enhancing interprofessional collaboration and moral resilience through targeted strategies in nursing practice and education can significantly improve ethical caring competencies. These efforts are essential for delivering high-quality, patient-centered care and for fostering a healthcare environment that respects the ethical principles guiding nursing practice. (shrink)

Women who suffer from fertility issues often use in vitro fertilization (IVF) to realize their wish to have children. However, IVF has its own set of strict administration rules that leave the women physically and emotionally exhausted. Feeling alienated and frustrated, many IVF users turn to internet IVF-centered forums to share their stories and to find information and support. Based on the observation of Dutch and Greek IVF forums and a selection of 109 questionnaires from Dutch and Greek IVF (...) forum users, we investigate the reasons why users of IVF participate in online communities centered on IVF, their need for emotional expression and support, and how they experience and use the information and support they receive through their participation in the online community. We argue that the emotional concerns expressed in such forums should be taken into account by health care ethics committees for IVF-related matters in order to promote more patient-oriented care and support for women going through IVF. (shrink)

Background: Family presence during invasive procedures and cardiopulmonary resuscitation (FPDR) is a highly controversial issue, with divergence of opinion among health professionals, with clinical evidence in favor, and with barriers to its implementation in comprehensive patient care. Many international organizations support health policies for its implementation, but it is not a widespread practice. Little research has been conducted on this subject from the perspective of patients and families. Objective: To learn opinions, perceptions, and desires of family members and (...) patients in terms of family presence during invasive procedures and cardiopulmonary resuscitation. Method: Qualitative descriptive study, using semi-structured interviews with relatives and patients regarding their experiences and perceptions about FPDR (n = 18) from 8 October 2017 to 8 March 2018. The interviews were recorded and transcribed verbatim for later analysis using the method of content analysis. Ethical considerations: This study has the approval of the Clinical Research Ethics Committee of the Fundació Unió Catalana d’Hospitals and ethical considerations were carefully regarded throughout the study. Results: Three significant categories were identified: knowledge, respect for rights, and accompaniment of the patient, relating FPDR to courage, emotional support, and trust in professionals. Conclusion: FPDR is an unusual practice; it is not offered to patients or their families, and it is not considered a patient’s right, although most of the interviewees support it. The desire for accompaniment is conditioned by the courage and knowledge of the accompanying persons, as well as the degree of invasiveness of the procedures. The results of this study provide information for a change of vision in patient-centered care. (shrink)

Background This study was designed to investigate how patient-reported shared decision-making relates to other aspects of patient centredness and satisfaction. Methods Questionnaire study with patients. Consecutive patients in primary care responding post visit. Associations are presented as proportions, positive predictive values, with 95% confidence intervals. Results 223 patient questionnaires were included. 62% (95% Confidence interval (CI): 55–69) of the patients indicated the highest possible rating of being involved in the decisions about their ongoing care (self-reported (...) SDM). Self-reported SDM had a positive predictive value (PPV) of between 85% (CI: 77–90) and 95% (CI: 90–98) for five other patient-centred aspects and satisfaction. Conclusion The results suggest that shared decision making is the patient-centred aspect hardest to achieve and that a patient-centred process leading up to the decision-making increases the chance of the patient being involved in the decision-making. (shrink)

The art of medicine stimulates the attitude of mind which concedes that on certain issues the patient knows what is right for him or her, and the public senses what is best for it. Not because they are right, but because on these issues there is no absolute right. —Anthony MooreThe benefits of fine literature, narrative analysis, and the listening to and telling of stories in education are well known (Carson 2001; Guillemin and Gillam 2006; Hunter 1996; Moore 1978; (...) Nussbaum 1990). Literature must not be overlooked in the planning or the delivery of health education and care. Narrative opens readers’ minds by promoting a plethora of viewpoints about stories and life. Through the facilitation of student-centred activities students can critically mull over central points of the story. In discerning meaning, conversations between students are generated around the crucial question, “Whose story is it?” Coincidentally this question drives, or ought to drive, medical integrity.Practitioners m. (shrink)

In response to cancer, patients may be thrown into precarious processes of remaking their purpose, identity, and connections to the world around them. Thoughtful and thorough responses to these issues can be supported by person-centered phenomenological approaches to caring for patients. The importance of perspectives on illness offered by theoretical phenomenology will become apparent through the example of the experience of nausea, or perhaps more accurately put—chemo sickness. The focus here is on how chemo sickness alters one's way of (...) relating to the world. I will examine the phenomenon of nausea through the lens of the phenomenological concept of mood—an existential feeling that engenders a diffused tone permeating through one's world and shapes the envisioned possibilities on one's horizon. (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)

There is an alarming trend in the field of medicine, whose portents are ominous but do not seem to shake the complacency and merry making doing the rounds. The wants of the medical man have multiplied beyond imagination. The cost of organizing conferences is no longer possible on delegate fees. The bottom-line is: Crores for a Conference, Millions for a Mid-Term. However, the problem is that sponsors keep a discreet but careful tab on docs. All in all, costs of medicines (...) escalate, and quality medical care becomes a luxury. The whole brunt of this movement is borne by the patient. Companies like GlaxoSmithKline, Bayer, Pfizer, Bristol-Myers Squibb, AstraZeneca, Schering-Plough, Abbott Labs, TAP Pharmaceuticals, Wyeth and Merck have paid millions of dollars each as compensation in the last few years. The financial condition of many pharmaceutical majors is not buoyant either. Price deflation, increased Rand D spending, and litigation costs are the main reasons. In the future, the messy lawsuits situation would no longer be restricted to industry. It would involve academia and practising doctors as well. Indian pharma industry captains, who were busy raking in the profits at present, would also come under the scanner. If nothing else, it means industry and docs will have to sit down and do some soul searching. Both short and long-term measures will have to be put into place. Short-term measures involve reduction in i) pharma spending over junkets and trinkets; ii) hype over 'me too' drugs; iii) manipulation of drug trials; iv) getting pliant researchers into drug trials; iv) manipulation of Journal Editors to publish positive findings about their drug trials and launches; v) and for Indian Pharma, to conduct their own unbiased clinical trial of the latest drug projected as a blockbuster in the West, before pumping in their millions. The long-term measures are related to the way biomedical advance is to be charted. We have to decide whether medicine is to become a corporate enterprise or remain a patient welfare centered profession. A third approach involves an eclectic resolution of the two. Such amount of patient welfare as also ensures profit, and such amount of profit as also ensures patient welfare is to be forwarded. For, profit, without patient welfare, is blind. And patient welfare, without profit, is lame. According to this approach, medicine becomes a patient welfare centered professional enterprise. The various ramifications of each of these approaches are discussed in this monograph. (shrink)

Based on Medicine as a human experience / David E. Reiser, David H. Rosen. c1984.

The structure, content, and orientation of the contemporary medical record inadequately reflect the appropriate influence of patients' rights and bioethics on health care. Most tellingly, the medical chart reveals a remarkable absence of attention to medical ethics, except in the case of crisis management. But medical ethics informs both crisis decision-making and virtually all clinical interventions. Indeed, clinical care embodies a complex array of choices influenced by individual and cultural values, themselves reflecting religious beliefs, personal histories, (...) psychologies, and social mores. But the typical medical chart, which records clinical descriptions, analyses, and rationales for treatment, rarely identifies or accounts for this value-laden dimension of care and thus both over-simplifies and distorts the depiction of a patient's illness and its treatment. To better reflect the complex moral domain of clinical care, and assist in organizing its complex structure, a systematic procedure is proposed here to evaluate the ethical status of every patient: As a routine part of the clinical evaluation, in a designated Ethical Concerns section of the medical record, an ?ethics work-uP? is designed to serve as a moral ?diagnostic? analogous to its scientific counterpart. Adapted to the needs of individual patients, such evaluations should identify ethical problems, coordinate related data, resources, and opinion, and define the rationale for choices made and actions pursued. In establishing improved integration of the ?epistemologies? of care and the ?ethics? of care, the goals of a more humane, patient-centered medicine may be better met. (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)

Edmund Pellegrino claims that medical ethics must be derived from a perception of the patient's damaged humanity, rather than from the self-imposed duties of professionals. This essay explores the meaning and examines the challenges to this patient-centered ethic. Social scientific and bioethical interpretations of medicine constitute one kind of challenge. A more pervasive challenge is the ascendancy of managed care, and especially investor-owned, for-profit managed care. A list of questions addressed to patients, physicians and (...) organizations is offered as one means of assessing this threat and moving toward morally trustworthy relationships. (shrink)

Purpose Engagement of healthcare professionals with patients from diverse cultural and religious backgrounds is crucial in our multicultural society, where miscommunication and errors in medical history taking can lead to incorrect treatment. In particular, Muslim patients may present unique considerations due to their specific cultural and religious beliefs, which can significantly impact treatment outcomes. This study focuses on perioperative medication therapy for patients undergoing upper and lower gastrointestinal tract and pancreatic tumor surgery, specifically examining whether Islamic beliefs were duly considered (...) in medication selection compared to a matching patient cohort. Materials and methods Data from January 2004 to July 2023 were analyzed. Muslim patients were identified using the onomastic method and matched with non-Muslim patients at a 1:3 ratio based on age, gender, and procedure. Analysis included examination of subcutaneous, oral, and intravenous medications, with attention to ingredients and compatibility with Islamic principles. Results Among 5272 patients, only 5 met the study’s inclusion criteria as Muslim patients, undergoing procedures such as anterior rectum resection, gastrectomy, and pancreatic head resection. Their religious affiliations were not documented in the admission records. According to the matched-pair analysis, consistent treatment was performed regardless of religious beliefs. All patients received subcutaneous medication, primarily enoxaparin, instead of fondaparinux, an Islam-compliant alternative. Intravenous heparin was used once for short period. Contrary to Islamic dietary restrictions and the availability of alternatives, capsules containing animal-derived gelatin and other non-compliant medications were administered orally. Conclusion This study underscores the importance of acknowledging Muslim patients’ cultural and religious backgrounds in the perioperative setting, as failure to do so may lead healthcare professionals to overlook their potential alternative medication needs, which are essential for providing tailored medical care in modern societies. Integration of diversity-related topics into medical curricula is essential for better preparing physicians for clinical practice and ensuring patient-centered care. (shrink)

The coronavirus disease (COVID-19) crisis provoked an organizational ethics dilemma: how to develop ethical pandemic policy while upholding our organizational mission to deliver relationship- and patient-centered care. Tasked with producing a recommendation about whether healthcare workers and essential personnel should receive priority access to limited medical resources during the pandemic, the bioethics department and survey and interview methodologists at our institution implemented a deliberative approach that included the perspectives of healthcare professionals and patient stakeholders in (...) the policy development process. Involving the community more, not less, during a crisis required balancing the need to act quickly to garner stakeholder perspectives, uncertainty about the extent and duration of the pandemic, and disagreement among ethicists about the most ethically supportable way to allocate scarce resources. This article explains the process undertaken to garner stakeholder input as it relates to organizational ethics, recounts the stakeholder perspectives shared and how they informed the triage policy developed, and offers suggestions for how other organizations may integrate stakeholder involvement in ethical decision-making as well as directions for future research and public health work. (shrink)

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