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)

Recently adopted health care practices and policies describe themselves as “patient-centered care.” The meaning of the term, however, remains contested and obscure. This paper offers a typology of “patient-centered care” models that aims to contribute to greater clarity about, continuing discussion of, and further advances in patient-centered care. The paper imposes an original analytic framework on extensive material covering mostly US health care and health policy topics over several decades. (...) It finds that four models of patient-centered care emphasize: patients versus their parts; patients versus providers; patients/providers/states versus “the system”; and patients and providers as persons. Each type is distinguishable along three dimensions: epistemological orientations, practical accommodations, and policy tools. Based on this analysis, the paper recommends that four questions be asked of any proposal that claims to provide patient-centered care: Is this care a means to an end or an end in itself? Are patients here subjects or objects? Are patients here individuals or aggregates? How do we know what patients want and need? The typology reveals that models are neither entirely compatible nor entirely incompatible and may be usefully combined in certain practices and policies. In other instances, internal contradictions may jeopardize the realization of coherent patient-centered care. (shrink)

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

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)

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)

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.

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

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)

We discuss the role of prior authorization (PA) in supporting patient-centered care (PCC) by directing health system resources and thus the ability to better meet the needs of individual patients. We begin with an account of PCC as a standard that should be aimed for in patient care. In order to achieve widespread PCC, appropriate resource management is essential in a healthcare system. This brings us to PA, and we present an idealized view of PA (...) in order to argue how at its best, it can contribute to the provision of PCC. PA is a means of cost saving and as such it has mixed success. The example of the US demonstrates how implementation of PA has increased health inequalities whereas best practice has the potential to reduce them. In contrast, systems of universal coverage, like those in Europe, may use the cost savings of PA to better address individuals' care and PCC. The conclusion we offer therefore is an optimistic one, pointing towards areas of supportive overlap between PCC and PA where usually the incongruities are most evident. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Managing the Transition from Patient-Centered Care to ProtocolDavid SlakterI learned that I would need a kidney transplant in the summer of 2015. This was not a complete surprise to me, as I had been subjected to a number of tests and invasive procedures to investigate nephritis since I was a child. I had heard similar stories of clinicians performing repeated tests on my father for similar (...) reasons without any conclusions. Following my recommendation for transplant and consultation with genomics specialists, the cause of my kidney failure was determined to be Alport syndrome. What made Alport syndrome so difficult to diagnose in my case was that the associated mutation is a rare, autosomal-dominant one that has only recently been associated with the condition.After reviewing the data on survival rates for transitioning to dialysis versus a transplant, my family and I then considered the success rates for living versus cadaver donors, and the success rates at various transplant centers. The current data favor the long-term outcomes of transplant over dialysis and living over cadaver donors. Since we had decided to focus on searching for a live donor, my nephrologist recommended contacting Renewal, an organization that specializes in connecting those in need of a kidney transplant with live donors and providing support for donors to make the donation process less burdensome.On Renewal’s recommendation, my family and friends reached out across their social networks to search for potential donors. Many of those tested for compatibility were eliminated on basic matching criteria, others due to previously undiagnosed medical problems. Finally, the wife of a childhood friend came forward as an eligible donor and was also an incredibly close match on the antigens tested for kidney transplants.Having a living donor who was also a friend made the transplant experience somewhat less intimidating than it might have been. It meant the transformation of an existing relationship with someone already close to me, with fewer open questions about what may have motivated them to be so generous than if the donor had been someone I did not know. It also meant our families could be together in the waiting room, and that we shared in each other’s recoveries.Life post-transplant has been a significant improvement from what it was like immediately beforehand. Before my transplant, I regularly weighed food and consulted nutrition charts to gauge how much potassium I was consuming. To prevent too much potassium from building up in my bloodstream, I had to take sodium polystyrene [End Page 111] regularly. As one might guess from the name, it tastes much like burnt Styrofoam, and I could only ingest it with copious amounts of fruit-flavored syrup (strawberry covered up the awful flavor the best). There are other potassium binders on the market now, so fewer people with kidney failure will likely need to engage in such gustatory experimentation.I was also able to engage in more activities than what was possible even years before my transplant. I had long experienced difficulty with aerobic exercises, but assumed the reason was merely being out of shape. Though I have always walked regularly, even the one-mile walk from my office to my apartment had become a chore by the end. Within a few months after my transplant, I was riding a bicycle all over NYC, from Harlem to Brooklyn and back regularly, and hiking trails in nearby state parks. I began sessions with a personal trainer and attained a level of fitness I had not reached since I played soccer as a child.The transition from personalized care to one more driven by protocol has been a surprising and challenging aspect of the transplant process. While my previous experience with medical treatment has been individual meetings with physicians, my post-transplant care is managed by a team of nephrologists and other specialists in transplant care. My initial transplant nephrologist was automatically assigned to me. Because the standard of care for transplant patients is often driven by protocol, my assigned nephrologist recommended a biopsy on my transplanted kidney due to results in my recent lab tests. When pressed on the necessity of a biopsy in my case versus... (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)

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 patients guide care in patient-centered care, and 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 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)

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)

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)

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)

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)

The ideal moral standard for surgical informed‐consent calls upon surgeons to carry out a disclosure dialogue with patients so they have as full as possible an understanding of the procedure before they sign the informed‐consent form. This study is the first to empirically explore patient preferences regarding disclosure dialogue. Twelve Israelis who underwent life‐saving surgeries participated in a narrative study. Three themes emerged from the analysis: objectification of patients, anxiety provoking processes and information, and lack of information that was (...) essential for patients. Findings contribute to existing debates among surgeons regarding the scope and importance of some disclosure components. Analysis led to our formulation of an augmented subjective model of information disclosure that participants prefer, which extends beyond the immediate present of the surgery to the period after discharge, and until return to routine. Surgeons should be aware of patient preferences in disclosure, and gaps between perceptions of surgeons, and preferences and needs of patients. (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)

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)

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)

Shared decision making has become the standard of care, yet there remains no consensus about how it should be conducted. Most accounts are concerned with threats to patient autonomy, and they address the dangers of a power imbalance by foregrounding the patient as a person whose complex preferences it is the practitioner's task to support. Other corrective models fear that this level of mutuality risks abdicating the practitioner's responsibilities as an expert, and they address that concern by (...) recovering a nuanced but genuinely directive clinical role. Cribb and Entwistle helpfully categorize models of shared decision making as ‘narrower’ and ‘broader’ and praise the latter's ‘open‐ended and fully dialogical ways of relating’. However, they stop short of providing a philosophical account of how that dialogue works. In this paper, a nurse–midwife and a philosopher collaborate to argue that the Socratic model of dialogue offers a solution to the practitioner–patient dilemma. In the Theaetetus, Socrates compares dialogical reasoning to ‘midwifery with all its standard features’. By means of a three‐way analogy, elements of midwifery practice are used to illuminate features of Socrates' claim that his dialogue is like midwifery; those features are then translated into an approach to shared decision making as the ‘midwifery of good thinking’ which both midwives and physicians would do well to adopt. A key concept that emerges is the need for practitioners to make a risk‐confidence assessment of the particular content of any decision to appropriately modulate their role in the practice of shared decision making. (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)

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)

Chronic diseases are recognized as a leadingcause of mortality, morbidity, health careutilization and cost. A constant tailoring ofcare to the actual needs of individualpatients, complexity and long duration are thedistinguishing features of chronic diseasemanagement.

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

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)

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)

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)

Nursing policy and healthcare reform are focusing on two, interconnected areas: person‐centred care and fundamental care. Each initiative emphasises a positive nurse–patient relationship. For these initiatives to work, nurses require guidance for how they can best develop and maintain relationships with their patients in practice. Although empirical evidence on the nurse–patient relationship is increasing, findings derived from this research are not readily or easily transferable to the complexities and diversities of nursing practice. This study describes a (...) novel methodological approach, called holistic interpretive synthesis (HIS), for interpreting empirical research findings to create practice‐relevant recommendations for nurses. Using HIS, umbrella review findings on the nurse–patient relationship are interpreted through the lens of the Fundamentals of Care Framework. The recommendations for the nurse–patient relationship created through this approach can be used by nurses to establish, maintain and evaluate therapeutic relationships with patients to deliver person‐centred fundamental care. Future research should evaluate the validity and impact of these recommendations and test the feasibility of using HIS for other areas of nursing practice and further refine the approach. (shrink)

The aim of this study was to explore patients’ experiences of using the Integrated Palliative care Outcome Scale (IPOS) during specialized palliative home care. The study adopted a qualitative approach with an interpretive descriptive design. Interviews were performed with 10 patients, of whom a majority were diagnosed with incurable cancer. Our findings suggest that the use of IPOS as a basis for conversation promotes safe care by making the patients feel confident that the care provided was (...) adapted to them which gives them a sense of safety. IPOS facilitated discussions between patients and nurses about care needs. The patients believed that using IPOS enabled reflection on their well‐being and life situation. In conclusion, the study finds that using IPOS is beneficial and provide ways to enable person‐centered care and with advantage could be used in specialized palliative home care. The results may help overcome barriers and facilitate the use of patient‐reported outcome measures (PROMs). To enable the use of PROMs such as IPOS in palliative home care, nurses need education and opportunities to develop routines that enable patients’ voice to be heard and thereby compose a basis for care. (shrink)

Health services internationally struggle to ensure health care is “person-centered” (or similar). In part, this is because there are many interpretations of “person-centered care” (and near synonyms), some of which seem unrealistic for some patients or situations and obscure the intrinsic value of patients’ experiences of health care delivery. The general concern behind calls for person-centered care is an ethical one: Patients should be “treated as persons.” We made novel use of insights from (...) the capabilities approach to characterize person-centered care as care that recognizes and cultivates the capabilities associated with the concept of persons. This characterization unifies key features from previous characterisations and can render person-centered care applicable to diverse patients and situations. By tying person-centered care to intrinsically valuable capability outcomes, it incorporates a requirement for responsiveness to individuals and explains why person-centered care is required independently of any contribution it may make to health gain. (shrink)

Person-centered care offers a promising way to manage clinicians’ conscientious objection to providing services they consider morally wrong. Health care centered on persons, rather than patients, recognizes clinicians and patients on the same stratum. The moral interests of clinicians, as persons, thus warrant as much consideration as those of other persons, including patients. Interconnected moral interests of clinicians, patients, and society construct the clinician as a socially embedded and integrated self, transcending the simplistic duality of private (...) conscience versus public role expectations. In this milieu of blurred boundaries, person-centered care offers a constructive way to accommodate conscientious objection by clinicians. The constitutionally social nature of clinicians commits and enables them, through care mechanisms such as self-care, to optimize the quality of health care and protect the welfare of patients. To advance these conditions, it is recommended that the medical profession develop a person-centered culture of care, along with clinician virtues and skills for person-centered communication. (shrink)

Patients who leave the hospital prior to their medically recommended endpoint (i.e., a discharge against medical advice, or “AMA”) typically prompt considerable consternation among physicians and o...

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)

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

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)

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

Background Social justice is recognized by reputable international organizations as a professional nursing value. However, there are serious doubts as to whether it is embodied in Catalan nursing education. Objectives To explore what nursing students take away from two teaching activities led by expert patients (one presentation and three expert patient illness narratives) on the topics of social justice, patient rights, and person-centered care. Research design Qualitative study using a content analysis approach. The research plan included (...) (1) think-pair-share activities (additional faculty-assisted presentation and three faculty-assisted, semi-structured scripted narratives); (2) paired reflections; (3) focus groups; and (4) content analysis of paired reflections and focus groups. Participants and research context Fourth-year nursing degree students at the Autonomous University of Barcelona (UAB), Spain. Convenience sampling was used. Ethical considerations The UAB Research Ethics Committee did not deem it necessary to apply any specific measures. We fully explained to patients that they could decide what medical information they would share with the students that was relevant to their learning, and we provided students with guidelines about patient confidentiality, dignity, and respect. Findings/results The students engaged in reflection about their education (recognizing that it had been centered on the professional and not the patient) and their relationship with the patient, in which they reproduced low-involvement patient care by modeling behaviors of their nurse educator. Moreover, they valued a person-centered care model with an emphasis on the emotional part but left out decision-making as an individual right of people. Conclusions The think-pair-share activities were useful to spark self-reflection among students, who identified aspects to change in their own practice, and reflected about their own education process, both of which promote change. (shrink)

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

This 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)

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)

Palliative care is provided at a certain timepoint, both in a person's life and in a societal context. What is considered to be a good death can therefore vary over time depending on prevailing social values and norms, and the person's own view and interpretation of life. This means that there are many interpretations of what a good death can actually mean for an individual. On a more general level, research in palliative care shows that individuals have basic (...) common needs, for example physical, mental, social and spiritual well‐being. Therefore, in today's pluralistic Western society, it becomes important that palliative care is person centred to enable individuals to receive, as far as can be achieved, care that promotes as good a life as possible based on the person's own needs and preferences, and in accordance with evidence and current laws. For many years a research group, consisting nurse researchers together with nurses working in palliative care, has developed a model for person‐centred palliative care, the 6S‐model. The model's central concept is Self‐image, where the starting point is the patient as a person and their own experience of the situation. The other concepts: Self‐determination, Symptom relief, Social relationships, Synthesis and Strategies are all related to the patient's self‐image, and often to each other. The model's development, value base and starting assumptions are reported here, as are examples of how the model is applied in palliative care in Sweden. The model has been, and still is, constantly evolving in a collaboration between researchers and clinically active nurses, and in recent years also with patients and close relatives. (shrink)

Abstract“Patient-centred care” is the recent response to the malaise produced in the field of health care from the point of view both of a technical mentality and the paternalistic model. The interest in the story-telling approach shown by both the humanities and the social sciences has favoured a “narrative turn” in medicine too, where the new ethics of therapeutic relationship consider the hermeneutic method a means by which to integrate evidence and subjectivity, scientific data and patient (...) experience. The aim of this paper is to show how Ricoeur’s theory of “threefold mimesis” makes a conceptual contribution to the use of narrative interviews in nursing and also be successfully transferred into and applied in the field of healthcare in general. First, the paper examines how this narrative approach might open up new possibilities for the acquisition of in-depth knowledge of patients’ life experiences, a condition indispensable for the improvement of the quality of care. Secondly, it highlights how this Ricoeurian method seems capable of provide an opportunity for healthcare professionals to review their own understanding of the caregiver-patient therapeutic relationship, beginning with their confrontation with the patient’s world as revealed by the narrative they provide. (shrink)