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

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

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

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

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

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

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

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)

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)

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

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

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

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

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)

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

The 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)

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

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

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

In this paper we offer an appreciation and critique of patient-led care as expressed in current policy and practice. We argue that current patient-led approaches hinder a focus on a deeper understanding of what patient-led care could be. Our critique focuses on how the consumerist/citizenship emphasis in current patient-led care obscures attention from a more fundamental challenge to conceptualise an alternative philosophically informed framework from where care can be led. We thus present (...) an alternative interpretation of patient-led care that we call ‘lifeworld-led care’, and argue that such lifeworld-led care is more than the general understanding of patient-led care. Although the philosophical roots of our alternative conceptualisation are not new, we believe that it is timely to re-consider some of the implications of these perspectives within current discourses of patient-centred policies and practice. The conceptualisation of lifeworld-led care that we develop includes an articulation of three dimensions: a philosophy of the person, a view of well-being and not just illness, and a philosophy of care that is consistent with this. We conclude that the existential view of well-being that we offer is pivotal to lifeworld-led care in that it provides a direction for care and practice that is intrinsically and positively health focused in its broadest and most substantial sense. (shrink)

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

The 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)

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)

In July 1993, the Scottish Highlands Centre for Human Caring sponsored a conference with the title Exploring the Spirituality in Caring. The papers given at the conference and included in this volume are offered as a contribution to the debate that must take place in nursing and in the wider context of health care provision. Ann Bradshaw's paper puts the debate in context arguing that nursing is fundamentally a loving response to the human being created in the image of (...) God. (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% : 55–69) of the patients indicated the highest possible rating of being involved in the decisions about their ongoing care. Self-reported SDM had a (...) positive predictive value of between 85% and 95% 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 idea that healthcare should become more person-centred is extremely influential. By using recent English policy developments as a case study, this article aims to critically analyse an important element of person-centred care, namely, the belief that to treat patients as persons is to think that care should be ‘co-produced’ by formal healthcare providers and patients together with unpaid carers and voluntary organizations. I draw on insights from political philosophy to highlight overlooked tensions between co-production and (...) values like equality and liberty. Regarding equality, I argue that co-production compounds both problems of gender inequality in the distribution of care labour and the challenges associated with securing equal access to care. Turning to liberty, I identify important commonalities between co-production and republicanism in political philosophy, given their shared insistence on common citizens’ civic virtue. Then, I use against co-production some liberal arguments against republicanism, to highlight a problem of over-demandingness. In bringing my argument to a close, however, I wish to caution against hastily rejecting co-production as a policy programme. (shrink)

:Influenced by the people-centered integrated care model, Healthy China 2030 was drafted recently with a special concern given to patient engagement. Although there are three levels of engagement, patients are more likely to be empowered and activated through an individualistic approach. Thus, engaging patients at the household level appear to have been overlooked so far. Supported by ethical values and practical evidence, this article attempts to address the importance of engaging patients at the household level in shaping the (...) Chinese healthcare system with the PCIC model orientation, and thus recommends four strategies for empowering and activating patients at the household level in the Chinese context. (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)

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)

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)

Objective: Contemporary ethical accounts of the patient-provider relationship emphasise respect for patient autonomy and shared decision making. We sought to examine the relative influence of involvement in decisions, confidence and trust in providers, and treatment with respect and dignity on patients’ evaluations of their hospital care.Design: Cross-sectional survey.Setting: Fifty one hospitals in Massachusetts.Participants: Stratified random sample of adults discharged from a medical, surgical, or maternity hospitalisation between January and March, 1998. Twelve thousand six hundred and eighty survey (...) recipients responded.Main outcome measure: Respondent would definitely be willing to recommend the hospital to family and friends.Results: In a logistic regression analysis, treatment with respect and dignity 3.4, 99% confidence interval 2.8 to 4.2) and confidence and trust in providers were more strongly associated with willingness to recommend than having enough involvement in decisions . Courtesy and availability of staff , continuity and transition , attention to physical comfort , and coordination of care were also significantly associated with willingness to recommend.Conclusions: Confidence and trust in providers and treatment with respect and dignity are more closely associated with patients’ overall evaluations of their hospitals than adequate involvement in decisions. These findings challenge a narrow emphasis on patient autonomy and shared decision making, while arguing for increased attention to trust and respect in ethical models of health care. (shrink)

The definition of ‘patient’ is commonly taken for granted and considered as obvious, but the term is rather underconceptualised in the literature. In this paper, it will be argued that the criterion of suffering can be considered a sufficient criterion for a parent to be considered a secondary patient when their seriously ill child is receiving medical care (i.e. not necessarily the parents themselves) – these parents are sufferers in virtue of the suffering of others. The nature (...) of parental and child health and well-being is clearly relational and bidirectional, thus also a bidirectional and relational integration of parental and paediatric patient care is necessary. A genuine expansion of the concept ‘patient’ to parents, both practically and theoretically, can help to bring awareness to the closely intertwining, interacting and interdependent vulnerabilities of both parties, the potential conflicts of interests involved, and also to demand support and reduce hurdles, for example, in reimbursement by health insurers. Treating parents as patients will (1) help the affected child (the primary patient), as unhealthy and/or mentally unstable parents are likely to negatively influence a child's treatment and (2) prevent the parents (the secondary patients) from becoming primary patients themselves due to their suffering because of their child's illness. (shrink)

The definition of ‘patient’ is commonly taken for granted and considered as obvious, but the term is rather underconceptualised in the literature. In this paper, it will be argued that the criterion of suffering can be considered a sufficient criterion for a parent to be considered a secondary patient when their seriously ill child is receiving medical care (i.e. not necessarily the parents themselves) – these parents are sufferers in virtue of the suffering of others. The nature (...) of parental and child health and well-being is clearly relational and bidirectional, thus also a bidirectional and relational integration of parental and paediatric patient care is necessary. A genuine expansion of the concept ‘patient’ to parents, both practically and theoretically, can help to bring awareness to the closely intertwining, interacting and interdependent vulnerabilities of both parties, the potential conflicts of interests involved, and also to demand support and reduce hurdles, for example, in reimbursement by health insurers. Treating parents as patients will (1) help the affected child (the primary patient), as unhealthy and/or mentally unstable parents are likely to negatively influence a child's treatment and (2) prevent the parents (the secondary patients) from becoming primary patients themselves due to their suffering because of their child's illness. (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.

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)

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

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)

PurposeScarce evidence exists regarding end-of-life decision (EOLD) in neurocritically ill patients. We investigated the factors associated with EOLD making, including the group and individual characteristics of involved healthcare professionals, in a multiprofessional neurointensive care unit (NICU) setting.Materials and methodsA prospective, observational pilot study was conducted between 2013 and 2014 in a 10-bed NICU. Factors associated with EOLD in long-term neurocritically ill patients were evaluated using an anonymised survey based on a standardised questionnaire.Results8 (25%) physicians and 24 (75%) nurses participated (...) in the study by providing their ‘treatment decisions’ for 14 patients at several time points. EOLD was ‘made’ 44 (31%) times, while maintenance of life support 98 (69%) times. EOLD patterns were not significantly different between professional groups. The individual characteristics of the professionals (age, gender, religion, personal experience with death of family member and NICU experience) had no significant impact on decisions to forgo or maintain life-sustaining therapy. EOLD was patient-specific (intraclass correlation coefficient: 0.861), with the presence of acute life-threatening disease (OR (95% CI): 18.199 (1.721 to 192.405), p=0.038) and low expected patient quality of life (OR (95% CI): 9.276 (1.131 to 76.099), p=0.016) being significant and independent determinants for withholding or withdrawing life-sustaining treatment.ConclusionsOur findings suggest that EOLD in NICU relies mainly on patient prognosis and not on the characteristics of the healthcare professionals. (shrink)

Malm and colleagues (2008) consider (and reject) five arguments putatively justifying the idea that healthcare workers (HCWs) have a duty to treat (DTT) during a pandemic. We do not have sufficient...

In patient-centred care, shared decision-making is advocated as the preferred form of medical decision-making. Shared decision-making is supported with reference to patient autonomy without abandoning the patient or giving up the possibility of influencing how the patient is benefited. It is, however, not transparent how shared decision-making is related to autonomy and, in effect, what support autonomy can give shared decision-making. In the article, different forms of shared decision-making are analysed in relation to five (...) different aspects of autonomy: (1) self-realisation; (2) preference satisfaction; (3) self-direction; (4) binary autonomy of the person; (5) gradual autonomy of the person. It is argued that both individually and jointly these aspects will support the models called shared rational deliberative patient choice and joint decision as the preferred versions from an autonomy perspective. Acknowledging that both of these models may fail, the professionally driven best interest compromise model is held out as a satisfactory second-best choice. (shrink)

One of the most basic understandings of nursing is that a nurse is a caregiver for a patient who helps to prevent illness, treat health conditions, and manage the physical needs of patients. Nursing is often presented as a caring profession, which provides patient care driven by ideals of empathy, compassion and kindness. These ideals of care have further been foregrounded through the development and implementation of stress on patient centred care (PCC) and/or (...) person‐centred practice (PCP). Although the idealisation of nursing as a caring profession is common, and one certainly seen as integral by nurses and written into the heart of regulatory documentation, we contend that the actual delivery of care is being undercut by the very regulatory climate that strives to professionalise care. As we outline, with specific reference to the context of Australian Nursing, this transformation delivers a commodified, even McDonaldized, model of patient management rather than care. It seems that even with its explicit stress on PCC and PCP, Australian Nursing cannot live up to its own care ideals. Having outlined this problem, the paper then demonstrates the ways in which PCC is thwarted at the coal face of nursing practice and that there must be an institutionalised change to be able to provide genuine patient‐centred care. (shrink)

The aim of this study was to increase understanding of how individual patient care and the ethical principles prescribed for nursing care are implemented in nursing documentation. The method used was a metasynthesis of the results of 14 qualitative research reports. The results indicate that individualized patient care is not visible in nurses’ documentation of care. It seems that nurses describe their tasks more frequently than patients’ experiences of their care. The results also (...) show that the structure of nursing documentation and the forms or manner of recording presupposed by the organization may prevent individual recording of patient care. In order to obtain visibility for good patient-centred and ethical nursing care, an effort should be made to influence how the content of nursing care is documented and made an essential part of individual patient care. If the content of this documentation does not give an accurate picture of care, patients’ right to receive good nursing care may not be realized. (shrink)