Positive claims about narrative approaches to healthcare suggest they could have many benefits, including supporting person-centred healthcare (PCH). Narrative approaches have also been criticised, however, on both theoretical and practical grounds. In this paper we draw on epistemological work on narrative and knowledge to develop a conception of narrative that responds to these concerns. We make a case for understanding narratives as accounts of events in which the way each event is described as influenced by the (...) ways other events in the narrative are described. This view of narratives recognises that they can contribute knowledge of different kinds of connections between events: not just causal, and not just of patient’s perspectives. Additionally, narratives can add further epistemic value by suggesting potentially useful lines of inquiry. We take narrative approaches to healthcare to include clinicians considering both patients’ informational offerings and their own professional understandings as narratives. On this understanding, our account is able to overcome the major theoretical and practical criticisms that have been levelled against the use of narrative approaches in healthcare, and can help to explain why and how narrative approaches are consistent with PCH. (shrink)

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

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)

In this paper we use the concept of the person to examine person‐centred dialogue and show how person‐centred dialogue is different from and significantly more than transfer of information, which is the dominant notion in health care. A further motivation for the study is that although person‐centredness as an idea has a strong heritage in nursing and the broader healthcare discourse, person‐centred conversation is usually discussed as a distinct and unitary approach (...) to communication, primarily related to the philosophy of dialogue—the philosophy of Martin Buber. In this paper we start with the concept of person to critically reflect on theoretical perspectives on communication to understand person‐centred conversations in the context of nursing and health. We position the concept of the person through the use of Paul Ricoeur's philosophy and follow by distinguishing four theoretical perspectives on communication before reflecting on the relevance of each of these for person‐centred communication. These perspectives are: a linear view of communication as transfer of information, communication as a relation in the sense of philosophy of dialogue, practice‐based communication on constructionist grounds, and communication as a practice to create social community. In relation to the concept of the person, we do not find transfer of information relevant as a theoretical underpinning for person‐centred conversations. From the other three perspectives that are relevant we distinguish five types of person‐centred conversations pertinent to nursing and health: problem identifying conversations, instructive conversations, guiding and supportive conversations, caring and existential conversations, and therapeutic conversations. Through this analysis it is argued that person‐centred communication and conversations are substantially different to transfer of information. We also discuss the significance of communication adjusted to specific situations, including emphasis on how we speak in relation to the aim or topic of a conversation. (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)

In this paper, I am concerned with certain phenomenological contributions to person-centred practices in healthcare. I propose a meaning-centred phenomenological approach to illness and contrast it with certain body-centred and feeling-centred accounts. I suggest that the proposed approach complements, rather than competes with, these other accounts in the area of phenomenology of illness. This is illustrated, for example, by the way the proposed meaning-centred approach tackles certain general challenges to the phenomenology of illness. (...) I pursue this approach to develop an account of illness as involving a loss of meaning. However, I point out that at the heart of illness lies the possibility of resilience. Resilience is existentially understood as enacting a reconstruction of meaning. I point out that resilience and certain related cognitive mechanisms make well-being possible. Here, to be well is existentially understood as being able to find meaning in life. The phenomenological analysis of existential resilience and well-being I offer in this paper indicates that resilient ways of being which enable well-being can be learned; the analysis thus brings to light deep motivations for supporting resilient learning through healthcare practices and policies. (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)

Person‐centred practice indubitably seems to be the antithesis of technology. The ostensible polarity of technology and person‐centred practice is an easy road to travel down and in their various forms has been probably travelled for decades if not centuries. By forging ahead or enduring these dualisms, we continue to approach and recede, but never encounter the elusive and the liminal space between technology and person‐centred practice. Inspired by Haraway's work, we argue that healthcare (...) practitioners who critically consider their cyborg ontology may begin the process to initiate and complicate the liminal and sought after space between technology and person‐centred practice. In this paper, we draw upon Haraway's idea that we are all materially and ontologically cyborgs. Cyborgs, the hybridity of machine and human, are part of our social reality and embedded in our everyday existence. By considering our cyborg ontology, we suggest that person‐centred practice can be actualized in the contextualized, embodied and relational spaces of technology. It is not a question of espousing technology or person‐centred practice. Such dualisms have been historically produced and reproduced over many decades and prevented us from recognizing our own cyborg ontology. Rather, it is salient that we take notice of our own cyborg ontology and how technological, habitual ways of being may prevent (and facilitate) us to recognize the embodied and contextualized experiences of patients. A disruption and engagement with the habitual can ensure we are not governed by technology in our logics and practices of care and can move us to a conscious and critical integration of person‐centred practice in the technologized care environments. By acknowledging ourselves as cyborgs, we can recapture and preserve our humanness as caregivers, as well as thrive as we proceed in our technological way of being. (shrink)

Healthcare in South Africa is in a crisis. Problems with infrastructure, management, human resources and the supply of essential medicines are at a critical level. This is compounded by a high burden of disease and disparity in levels of service delivery, particularly between public and private healthcare. The government has put ambitious plans in place, which are part of the National Development Plan to ward 2030. In the midst of this we find the individual person and their (...) family and community staggering under the suffering caused by disease, poverty, crime and violence. There is a more than 70% chance that this person and their family and community are trying to make sense of this within a spiritual framework and that they belong to a faith-based community. This article explores the valuable contribution of spirituality, spiritual and pastoral work, the faith-based community and faith-based organisations to holistic people-centred healthcare in South Africa. (shrink)

The phrase ‘person‐centred care’ (PCC) reminds us that the fundamental philosophical goal of caring for people is to uphold or promote their personhood. However, such an idea has translated into promoting individualist notions of autonomy, empowerment and personal responsibility in the context of consumerism and neoliberalism, which is problematic both conceptually and practically. From a conceptual standpoint, it ignores the fact that humans are social, historical and biographical beings, and instead assumes an essentialist or idealized concept of personhood (...) in which a person is viewed as an individual static object. From a practical standpoint, the application of such a concept of personhood can lead to neglect of a person's fundamental care needs and exacerbate the problems of social inequity, in particular for older people and people with dementia. Therefore, we argue that our understanding of PCC must instead be based on a dynamic concept of personhood that integrates the relevant social, relational, temporal and biographical dimensions. We propose that the correct concept of personhood in PCC is one in which persons are understood as socially embedded, relational and temporally extended subjects rather than merely individual, autonomous, asocial and atemporal objects. We then present a reconceptualization of the fundamental philosophical goal of PCC as promoting selfhood rather than personhood. Such a reconceptualization avoids the problems that beset the concept of personhood and its application in PCC, while also providing a philosophical foundation for the growing body of empirical literature that emphasizes the psychosocial, relational, subjective and biographical dimensions of PCC. (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)

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 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)

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)

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

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)

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

Engagement with the historical and theoretical underpinnings of measuring quality of life (QoL) and patient‐reported outcomes (PROs) in healthcare is important. Ideas and values that shape such practices—and in the endgame, people's lives—might otherwise remain unexamined, be taken for granted or even essentialized. Our aim is to explicate and theoretically discuss the philosophical tenets underlying the practices of QoL assessment and PRO measurement in relation to the notion of person‐centredness. First, we engage with the late‐modern history of the (...) concept of QoL and the act of assessing and measuring it. Working with the historical method of genealogy, we describe the development of both QoL assessments and PRO measures (PROMs) within healthcare by accounting for the contextual conditions for their possibility. In this way, the historical and philosophical underpinnings of these measurement practices are highlighted. We move on to analyse theoretical and philosophical underpinnings regarding the use of PROMs and QoL assessments in clinical practice, as demonstrated in review studies thereof. Finally, we offer a critical analysis regarding the state of theory in the literature and conclude that, although improved person‐centredness is an implied driver of QoL assessments and PROMs in clinical practice, enhanced theoretical underpinning of the development of QoL assessments is called for. (shrink)

Background:Person-centred care is often described as an ideal way of preserving vulnerable persons’ wellbeing and dignity and an essential component of quality-care delivery. However, the staff find that making the care dignified is the most challenging issue, often because of effectivity, everyday stress and overload. In the interests of making the care more person-centred, systematic intervention involving ‘one-to-one contact’ (resident – carer) was trialled for 30 min twice a week over 12 months in two units in (...) a nursing home in Eastern Norway.Objectives:The aim of the study was to elicit healthcare staff’s experiences of implementing ‘one-to-one contact’ between residents and carers in nursing homes.Methods:The study has a grounded-theory inspired design. Two groups of health care staff were each interviewed three times. Data were collected over an 18-month period.Ethical considerations:The study was approved by the Data Protection Official for Research under the auspices of the Norwegian Social Science Data Services.Findings:The core category is ‘One-to-one contact’ at a nursing home is possible, but requires open-mindedness. The core category indicates that open-mindedness is required, since it does not take much for scepticism to take over and cause reversion to habitual practices. The category Expectant but Sceptical describes staff thoughts and experiences before the implementation phase got underway. The category Positive but Undecided describes staff experiences 6 months into the intervention and after 12 months.Conclusions:This study has revealed that systematic ‘one-to-one contact’ between resident and carer in nursing home is achievable, and that such a simple action might be an important step towards achieving more person-centred care as the resident is seen more as a person. However, in order to make a more person-centred and dignified approach to care constant attentiveness and awareness is required, as there were ongoing factors counteracting it. (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...

Background Trust is an essential phenomenon of relationship between patients and healthcare professionals and can be described as an accepted vulnerability to the power of another person over something that one cares about in virtue of goodwill toward the trustor. This characterization of interpersonal trust appears to be adequate for patients suffering from chronic illness. Trust is especially important in the context of chronic cardiovascular diseases as one of the main global health problems. Research Aim The purpose of (...) the qualitative study was to gain a deeper understanding of how people with chronic cardiovascular disease experience and make sense of trust in healthcare professionals. Research Design Eleven semi-structured interviews with participants analysed using interpretative phenomenological analysis to explore in detail their lived experience of trust as a relational phenomenon. Participants and Research Context Participants with chronic cardiovascular disease were purposively recruited from inpatients on the cardiology ward of the university hospital located in central Slovakia. Ethical Considerations The study was approved by the faculty ethics committee. Participants gave their written informed consent. Findings Four Interrelated Group Experiential Themes Sense of co-existence; Belief in competence; Will to help; Ontological security with eight subthemes were identified. The findings describe the participants' experience with trust in healthcare professionals as a phenomenon of close co-existence, which is rooted in the participants’ vulnerability and dependence on the goodwill and competence of health professionals to help with the consequence of (re)establishing a sense of ontological security in the situation of chronic illness. Conclusion Findings will contribute to an in-depth understanding of trust as an existential dimension of human co-existence and an ethical requirement of healthcare practice, inspire patient empowerment interventions, support adherence to treatment, and person-centred care. (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)

Person Centred Medicine is a substantial and contentious view of healthcare that carries both ontological and epistemological presuppositions. This chapter examines two key aspects: that the person is a central, basic irreducible element in ontology and that person-level knowledge is both important and possible. Some reasons for holding both of these are sketched.

Low‐back pain can be invalidating physically as well as mentally. Despite professional help to treat and prevent low‐back pain, the pain often persists, and so do the problems related to low‐back pain. An intervention that made it possible for a significant part of patients with low‐back pain to improve health and well‐being raised the question: Why was it possible to help some and not others? The aim of the present paper was to achieve a deeper understanding of factors patients experienced (...) as helpful in professional support related to low‐back pain. This was explored using a hermeneutic‐phenomenological approach while analysing 20 interviews with patients with low‐back pain purposively chosen interviews conducted in relation to the intervention. An analysis was made using Ricoeur's interpretation theory. Data on both positive and negative experiences were read and reflected upon. We found that healthcare professionals’ adoption of a narrative approach facilitating the patient's perspective was perceived as helpful. Patients experienced this as being taken seriously; an experience that could be explained at a deeper, more nuanced level using Heidegger's philosophy. Facilitating the patient's perspective was conditional not only on the professional obtaining access to the patient's perspective but also on understanding and acknowledging the patient's existence. The challenge for healthcare professionals in this respect is to bridge the gap between the consultation's fact‐focused concern with the medical implications of low‐back pain and the patient's concern with the implications low‐back pain has for his or her personal identity and life. Listening to the patient's perspective in itself supports the subjective recovery process, while also supporting the quality of patient‐centred support and strengthening the patient's trust in its helpfulness. (shrink)

BackgroundIn childhood cancer care, healthcare professionals must deal with several difficult moral situations in clinical practice. Previous studies show that morally difficult challenges are related to decisions on treatment limitations, infringing on the child's integrity and growing autonomy, and interprofessional conflicts. Research also shows that healthcare professionals have expressed a need for clinical ethics support to help them deal with morally difficult situations. Moral case deliberations (MCDs) are one example of ethics support. The aim of this study was (...) to describe the MCD-related outcomes that healthcare professionals in childhood cancer care considered important, before MCDs were implemented, in order to facilitate the implementation of MCDs in childhood cancer care in Sweden.MethodsThis study is based on qualitative data. Healthcare professionals, mostly representing registered nurses, nursing assistants and physicians, working at childhood cancer care centres in Sweden, were invited to respond to the translated and content validated European MCD Outcomes Instrument, before participating in regular MCDs. Answers to the main open-ended question, included in the questionnaire, was analysed according to systematic text condensation.ResultsData was collected from 161 responses from the healthcare professionals. The responses included healthcare professionals’ perceptions of which MCD-related outcomes they found important for handling moral challenges. Three different themes of important outcomes from the analysis of the data are presented as follows:Interprofessional well-being in team interactionson a team level;Professional comfort when dealing with moral challengeson a personal level; andImproved quality of care for the child and the familyon a care level.ConclusionsHealthcare professionals in childhood cancer care considered it important that ethics support could enhance the well-being of interprofessional teams, support healthcare professionals on an individual level and improve quality of care. The results of this study can be used in current and future training for MCD-facilitators. When knowing the context specific important MCD-outcomes, the sessions could be adapted. Managers in childhood cancer care would benefit from knowing about the specific important outcomes for their target group because they could then create relevant working conditions for clinical ethics support. (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)

Dignity, usually considered an essential ethical value in healthcare, is a relatively complex, multifaceted concept. However, healthcare professionals often have only a vague idea of what it means to respect dignity when providing care, especially for persons with impaired autonomy. This article focuses on two concepts of dignity, human dignity and dignity of identity, and aims to analyse how these concepts can be applied in the care for persons with impaired autonomy and in furthering the practice of respect (...) and protection from harm. Three vignettes were designed to illustrate typical caring situations involving patients with mild to severely impaired autonomy, including patients with cognitive impairments. In situations like these, there is a risk of the patient’s dignity being disrespected and violated. The vignettes were then analysed with respect to the two concepts of dignity to find out whether this approach can illuminate what is at stake in these situations and to provide an understanding of which measures could safeguard the dignity of these patients. The analysis showed that there are profound ethical challenges in the daily care of persons with impaired autonomy. We suggest that these two concepts of human dignity could help guide healthcare professionals to develop practical skills in person-centred, ethically grounded care, where the patient’s wishes and needs are the starting point. (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)

The incidence of chronic illness is growing globally. As a result, there are fiscal and social implications for health delivery. Alongside the increased burden on health resources is the expectation that someone within the family will assume the responsibility of carer for those who are chronically ill. The expectation to assume the role of carer may be amplified for family members who are also nurses. Currently, there is little research that investigates the impact of nurses who are carers for family (...) with a chronic illness. Consequently, this qualitative study, based on face‐to‐face and telephone dialogue, was conducted using unstructured interviews. A phenomenological‐hermeneutic approach utilizing the hermeneutic circle was employed to understand the meaning of the transcriptions. Hermeneutic phenomenology inspired by Heideggerian philosophy was used as a framework to clarify themes and build ways of understanding the phenomenon of ‘Being’ a nurse and a family carer. Themes identified in the analysis of the study included a personal world, a professional world and a practical world. This paper explicates the findings from examination of the personal world of ‘Being’ a nurse who is also a family carer. Analysis revealed there were three facets to this way of ‘Being’: a shared experience, a caring experience and a fraught experience. The findings of the study disclosed that participants were informed by experiences that were both enriching and conflicting. These insights can enlighten healthcare professionals to the tensions which exist for nurses who care for family so that these considerations are incorporated into individualized and effective family‐centred care. (shrink)

Introduction The starting point is that ethical competence is the basis for ethical healthcare practices and quality of care. Simultaneously, there is a need for research and development from a holistic multi-professional perspective. Aim The aim is to create a proposed model for multi-professional ethical competence grounded in clarified meanings and dimensions of ethical competence studied from a multi-professional healthcare perspective. The research questions are, what is ethical competence from a multi-professional healthcare perspective and what strengthens a (...) multi-professional ethical healthcare practice? Research design The research has a qualitative approach and hermeneutic application research design. Two groups with six participants from clinical practice and two scientific researchers in each group met four times for dialogue. Thematic analysis was used as an analysis method. Ethical considerations The research is approved by the Declaration of Helsinki, the General Data Protection Regulations, and ethical permission was asked from the Norwegian Centre for Research Data (NSD). Results The proposed model for multi-professional ethical competence encompasses a three-dimensional ethical value base that is underpinned by: Ethical attitude – a personal desire to do good; Ethical basis – the best for the patient as a common goal and Ethical culture – common goals and values in the organization. Multi-professional ethical competence is strengthened by: Reflection – to see with new wondering eyes; Time for talk – interdisciplinary teamwork and Leadership – an ethical role model and support. Discussion Ethical competence has a strong link to the core of caring ethics and a deeper personal value base and attitude. Ethical competence involves the whole culture and is seen as a shared value base and a responsibility to do the best for the patient as a multi-professional team and organization. Ethical competence becomes active in healthcare practice by opening up for meaningful multi-professional talks and reflections. (shrink)

This paper presents a systematic account of ethical issues actualised in different areas, as well as at different levels and stages of health care, by introducing organisational and other procedures that embody a shift towards person centred care and shared decision-making (PCC/SDM). The analysis builds on general ethical theory and earlier work on aspects of PCC/SDM relevant from an ethics perspective. This account leads up to a number of theoretical as well as empirical and practice oriented issues that, (...) in view of broad advancements towards PCC/SDM, need to be considered by health care ethics researchers. Given a PCC/SDM-based reorientation of health care practice, such ethics research is essential from a quality assurance perspective. (shrink)

Advanced practice nursing is an expanding field within many healthcare environments around the world. The scope and particular focus of an advanced practice nurse’s role is highly variable and thus the ethical challenges they face are equally diverse. Yet, the dominant existing ethics pedagogies used in the nursing context have been described as not fit-for-purpose. Existing pedagogies do not adequately prepare APN candidates to meet the ethical challenges they will encounter in practice. Applying an arts-based pedagogy in ethics education (...) for advanced practice nurses has the capacity to provide effective ethics learning. This article reports on the value of a multidisciplinary pedagogy used in a graduate course in nursing leadership, law and ethics for advanced practice at an Australian university. Written in a multidisciplinary mode that allies with the pedagogy it presents, it addresses the key pedagogical challenges and opportunities of teaching ethics through an innovative arts-based pedagogy centred upon the changing depictions of the human person in works of art housed in a major state-funded art gallery. (shrink)

Advanced practice nursing is an expanding field within many healthcare environments around the world. The scope and particular focus of an advanced practice nurse’s role is highly variable and thus the ethical challenges they face are equally diverse. Yet, the dominant existing ethics pedagogies used in the nursing context have been described as not fit-for-purpose. Existing pedagogies do not adequately prepare APN candidates to meet the ethical challenges they will encounter in practice. Applying an arts-based pedagogy in ethics education (...) for advanced practice nurses has the capacity to provide effective ethics learning. This article reports on the value of a multidisciplinary pedagogy used in a graduate course in nursing leadership, law and ethics for advanced practice at an Australian university. Written in a multidisciplinary mode that allies with the pedagogy it presents, it addresses the key pedagogical challenges and opportunities of teaching ethics through an innovative arts-based pedagogy centred upon the changing depictions of the human person in works of art housed in a major state-funded art gallery. (shrink)

Advanced practice nursing is an expanding field within many healthcare environments around the world. The scope and particular focus of an advanced practice nurse’s role is highly variable and thus the ethical challenges they face are equally diverse. Yet, the dominant existing ethics pedagogies used in the nursing context have been described as not fit-for-purpose. Existing pedagogies do not adequately prepare APN candidates to meet the ethical challenges they will encounter in practice. Applying an arts-based pedagogy in ethics education (...) for advanced practice nurses has the capacity to provide effective ethics learning. This article reports on the value of a multidisciplinary pedagogy used in a graduate course in nursing leadership, law and ethics for advanced practice at an Australian university. Written in a multidisciplinary mode that allies with the pedagogy it presents, it addresses the key pedagogical challenges and opportunities of teaching ethics through an innovative arts-based pedagogy centred upon the changing depictions of the human person in works of art housed in a major state-funded art gallery. (shrink)

Indoor smoking bans in public places is usually held as a simple and straightforward example of the application of the harm principle in public health. However, implementing indoor smoking bans in mental health centres is difficult because of the potential neurological and social benefits of smoking for persons with schizophrenia, as suggested by some empirical studies. In this article, the ethical challenges related to smoking bans in mental health centres as justified by the harm principle are explored. Particular attention is (...) given to the case of R v. Nottinghamshire Healthcare NHS Trust . The article concludes by arguing that the possible benefits of smoking for persons with schizophrenia creates a rightful interest that cannot be ignored even if one applies the harm principle to protect others from the negative effects of second-hand smoke. Applying the harm principle in the case of smoking bans in mental health centres requires protecting the interest of persons with schizophrenia to smoke via the value of reciprocity. (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)

Background: Providing care for a home-dwelling person with dementia who resists care is an ethical and practical complex and challenging task. Faced with a growing number of persons with dementia, the healthcare professional’s understanding of how to best care for and prevent unnecessary use of coercion with persons with dementia is of key importance. Research aim: The aim of this study was to explore the use of trust-building interventions in home-dwelling persons with dementia resisting care, as described by (...) health professionals in documents of decisions of forced treatment and care. Research design: A qualitative thematic document analysis inspired by critical realism was conducted. Participants and research context: Descriptions of trust-building interventions were extracted from 88 documents of forced treatment and care for home-dwelling persons with dementia, receiving home healthcare, in 2015 and 2016. Ethical considerations: Approved by the Regional Committee for Medical and Health Research Ethics, reference number 2017/788, and controlled by the Norwegian Centre for Research Data, reference number 54897. The study adhered to the guidelines of the Declaration of Helsinki. Findings: We found that “balancing safe care with the person’s integrity” was an overarching theme that permeated the descriptions of trust-building interventions in the study. Three main themes were identified when the data were analyzed: safeguarding care, protecting integrity, and optimizing the environment. Discussion and conclusion: Health professionals balanced on a thin line between care and integrity when met with resistance from person with dementia. However, the trust-building interventions used in the most challenging situations did not differ from the interventions used in general in dementia care. Two knowledge gaps were identified: how to perform appropriate assessments of situations of home-dwelling persons with dementia when met with resistance to care, and whether environmental initiatives may also benefit home-dwelling persons with dementia who are not easily cared for. (shrink)

Osteopathy is a person-centred healthcare discipline that emphasizes the body’s structure-function interrelationship—and its self-regulatory mechanisms—to inform a whole-person approach to health and wellbeing. This paper aims to provide a theoretical framework for developing an integrative hypothesis in osteopathy, which is based on the enactivist and active inference accounts. We propose that osteopathic care can be reconceptualised under active inference as a unifying framework. Active inference suggests that action-perception cycles operate to minimize uncertainty and optimize an individual’s (...) internal model of the lived world and, crucially, the consequences of their behaviour. We argue that active inference offers an integrative framework for osteopathy, which can evince the mechanisms underlying dyadic and triadic exchanges and osteopathic care outcomes. We propose that this theoretical framework can underpin osteopathic care across the lifespan, from preterm infants to the elderly and those with persistent pain and other physical symptoms. In situations of chronicity, as an ecological niche, the patient-practitioner dyad provides the osteopath and the patient with a set of affordances, i.e., possibilities for action provided by the environment, that through shared intentionally, can promote adaptations and restoration of productive agency. Through a dyadic therapeutic relationship, as they engage with their ecological niche’s affordances—a structured set of affordances shared by agents—osteopath and patient actively construct a shared sense-making narrative and realise a shared generative model of their relation to the niche. In general, touch plays a critical role in developing a robust therapeutic alliance, mental state alignment, and biobehavioural synchrony between patient and practitioner. However, its role is particularly crucial in the fields of neonatology and paediatrics, where it becomes central in regulating allostasis and restoring homeostasis. We argue that from an active inference standpoint, the dyadic shared ecological niche underwrites a robust therapeutic alliance, which is crucial to the effectiveness of osteopathic care. Considerations and implications of this model—to clinical practice and research, both within- and outside osteopathy—are critically discussed. (shrink)

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

The global COVID‐19 pandemic challenged the world—how it functions, how people move in the social worlds and how government/government services and people interact. Health services, operating under the principles of new public management, have undertaken rapid changes to service delivery and models of care. What has become apparent is the mechanisms within which contemporary health services operate and how services are not prioritising the person at the centre of care. Person‐centred care (PCC) is the philosophical premise upon (...) which models of health care are developed and implemented. Given the strain that COVID‐19 has placed on the health services and the people who deliver the care, it is essential to explore the tensions that exist in this space. This article suggests that before the pandemic, PCC was largely rhetoric, and rendered invisible during the pandemic. The paper presents an investigation into the role of PCC in these challenging times, adopting a Foucauldian lens, specifically governmentality and biopolitics, to examine the policies, priorities and practical implications as health services pivoted and adapted to changing and acute demands. Specifically, this paper draws on the Australian experience, including shifting nursing workforce priorities and additional challenges resulting from public health directives such as lockdowns and limitations. The findings from this exploration open a space for discussion around the rhetoric of PCC, the status of nurses and that which has been lost to the pandemic. (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)

Advocates of the Person-Centered Healthcare (PCH) approach say that PCH is a response to a failure of caring for patients as persons. Nevertheless, there are many human subjects falling to fulfill the requirements of a traditional philosophical definition of personhood. Hence, if we take, PCH seriously, a greater clarification of the key terminology of PCH is urgently needed. It seems necessary, for instance, that the concept of the person should be extended in order to include those individuals (...) with insipient or immature levels of consciousness, as well as those who are severely and permanently mentally handicapped. In this article, we will depart from some well-known philosophical concepts of what it means to be a person and try to offer a broader and more inclusive meaning. We suggest that persons are human beings with a socially recognized biography, which implies to recognize as persons individuals with necessities, but also with narratives about their interests and claims, expressed sometimes by other people related to them. This is particularly the case of individuals that suffer from severe disorders of consciousness. For those, is not only care that matters; respect matters too. Caregivers should therefore not only sympathetically care for the well-being of these people; they should also be concerned to respect their interests and claims by interpreting them empathetically, in the light of their biographical story. Our conclusion is that, in order to be coherent, PCH must consider individuals with severe disorders of consciousness as persons and we think that our revised concept of personhood fits with this requirement. (shrink)