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)

BackgroundIn most Anglophone nations, policy and law increasingly foster an autonomy-based model, raising issues for large numbers of people who fail to fit the paradigm, and indicating problems in translating practical and theoretical understandings of ‘good death’ to policy. Three exemplar populations are frail older people, people with dementia and people with severe traumatic brain injury. We hypothesise that these groups face some over-lapping challenges in securing good end-of-life care linked to their limited agency. To better understand these challenges, we (...) conducted a scoping review and thematic synthesis.MethodsTo capture a range of literature, we followed established scoping review methods. We then used thematic synthesis to describe the broad themes emerging from this literature.ResultsInitial searches generated 22,375 references, and screening yielded 49, highly heterogeneous, studies that met inclusion criteria, encompassing 12 countries and a variety of settings. The thematic synthesis identified three themes: the first concerned the processes of end-of-life decision-making, highlighting the ambiguity of the dominant shared decision-making process, wherein decisions are determined by families or doctors, sometimes explicitly marginalising the antecedent decisions of patients. Despite this marginalisation, however, the patient does play a role both as a social presence and as an active agent, by whose actions the decisions of those with authority are influenced. The second theme examined the tension between predominant notions of a good death as ‘natural’ and the drive to medicalise death through the lens of the experiences and actions of those faced with the actuality of death. The final theme considered the concept of antecedent end-of-life decision-making, its influence on policy and decision-making, and some caveats that arise from the studies.ConclusionsTogether these three themes indicate a number of directions for future research, which are likely to be applicable to other conditions that result in reduced agency. Above all, this review emphasises the need for new concepts and fresh approaches to end of life decision-making that address the needs of the growing population of frail older people, people with dementia and those with severe traumatic brain injury. (shrink)

In the western healthcare, shared decision making has become the orthodox approach to making healthcare choices as a way of promoting patient autonomy. Despite the fact that the autonomy paradigm is poorly suited to paediatric decision making, such an approach is enshrined in English common law. When reaching moral decisions, for instance when it is unclear whether treatment or non-treatment will serve a child’s best interests, shared decision making is particularly questionable because agreement does not ensure moral validity. With reference (...) to current common law and focusing on intensive care practice, this paper investigates what claims shared decision making may have to legitimacy in a paediatric intensive care setting. Drawing on key texts, I suggest these identify advantages to parents and clinicians but not to the child who is the subject of the decision. Without evidence that shared decision making increases the quality of the decision that is being made, it appears that a focus on the shared nature of a decision does not cohere with the principle that the best interests of the child should remain paramount. In the face of significant pressures toward the displacement of the child’s interests in a shared decision, advantages of a shared decision to decisional quality require elucidation. Although a number of arguments of this nature may have potential, should no such advantages be demonstrable we have cause to revise our commitment to either shared decision making or the paramountcy of the child in these circumstances. (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)

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 discipline of knowledge translation (KT) emerged as a way of systematically understanding and addressing the challenges of applying health and medical research in practice. In light of ongoing and emerging critique of KT from the medical humanities and social sciences disciplines, KT researchers have become increasingly aware of the complexity of the translational process, particularly the significance of culture, tradition and values in how scientific evidence is understood and received, and thus increasingly receptive to pluralistic notions of knowledge. Hence, (...) there is now an emerging view of KT as a highly complex, dynamic, and integrated sociological phenomenon, which neither assumes nor creates knowledge hierarchies and neither prescribes nor privileges scientific evidence. Such a view, however, does not guarantee that scientific evidence will be applied in practice and thus poses a significant dilemma for KT regarding its status as a scientific and practice-oriented discipline, particularly within the current sociopolitical climate. Therefore, in response to the ongoing and emerging critique of KT, we argue that KT must provide scope for relevant scientific evidence to occupy an appropriate position of epistemic primacy in public discourse. Such a view is not intended to uphold the privileged status of science nor affirm the “scientific logos” per se. It is proffered as a counterbalance to powerful social, cultural, political and market forces that are able to challenge scientific evidence and promote disinformation to the detriment of democratic outcomes and the public good. (shrink)

This article addresses how health professionals should monitor and safeguard their patients’ ability to participate in making clinical decisions and making subsequent decisions regarding the implementation of their treatment plan. Patient participation in clinical decision-making is essential, e.g. in self-care, where patients are responsible for most ongoing care. We argue that one common, fact-oriented patient education strategy may in practice easily tend to take a destructive form that we call error trawling. Illustrating with empirical findings from a video study of (...) consultations between clinicians and adolescent patients with diabetes, we argue on independent grounds that this strategy not only risks to overlook significant weaknesses in patient decision competence, but also to undermine patient capacity for decision-making and implementing care. In effect, this strategy for clinically monitoring and addressing the problem of fragile decision-making capacity brings hazards in need of address. We clo... (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 centered care (PCC) invites ideas of shared responsibility as a direct result of its shared decision making (SDM) process. The intersection of PCC and psychiatric contexts brings about what I refer to as _the responsibility problem_, which seemingly arises when SDM is applied in psychiatric settings due to (1) patients’ potentially diminished capacities for responsibility, (2) tension prompted by professional reasons for and against sharing responsibility with patients, as well as (3) the responsibility/blame dilemma. This paper aims to do (...) away with the responsibility problem through arguing for a functional approach to mental illness, a blameless responsibility ascription to the person with mental illness, as well as a nuanced understanding of SDM as part of an emancipation-oriented PCC model. (shrink)

Family members do not have an official position in the practice of euthanasia and physician assisted suicide in the Netherlands according to statutory regulations and related guidelines. However, recent empirical findings on the influence of family members on EAS decision-making raise practical and ethical questions. Therefore, the aim of this review is to explore how family members are involved in the Dutch practice of EAS according to empirical research, and to map out themes that could serve as a starting point (...) for further empirical and ethical inquiry. A systematic mixed studies review was performed. The databases Pubmed, Embase, PsycInfo, and Emcare were searched to identify empirical studies describing any aspect of the involvement of family members before, during and after EAS in the Netherlands from 1980 till 2018. Thematic analysis was chosen as method to synthesize the quantitative and qualitative studies. Sixty-six studies were identified. Only 14 studies had family members themselves as study participants. Four themes emerged from the thematic analysis. 1) Family-related reasons to request EAS. 2) Roles and responsibilities of family members during EAS decision-making and performance. 3) Families’ experiences and grief after EAS. 4) Family and ‘the good euthanasia death’ according to Dutch physicians. Family members seem to be active participants in EAS decision-making, which goes hand in hand with ambivalent feelings and experiences. Considerations about family members and the social context appear to be very important for patients and physicians when they request or grant a request for EAS. Although further empirical research is needed to assess the depth and generalizability of the results, this review provides a new perspective on EAS decision-making and challenges the Dutch ethical-legal framework of EAS. Euthanasia decision-making is typically framed in the patient-physician dyad, while a patient-physician-family triad seems more appropriate to describe what happens in clinical practice. This perspective raises questions about the interpretation of autonomy, the origins of suffering underlying requests for EAS, and the responsibilities of physicians during EAS decision-making. (shrink)

Background Healthcare systems are increasingly struggling with resource constraints, given demographic changes, technological development, and citizen expectations. The aim of this article is to normatively analyze different suggestions regarding how publicly financed plastic surgery should be delineated in order to identify a well-considered, normative rationale. The scope of the article is to discuss general principles and not define specific conditions or domains of plastic surgery that should be treated within the publicly financed system. Methods This analysis uses a reflective equilibrium (...) approach, according to which considered normative judgements in one area should be logically and argumentatively coherent with considered normative judgements and background theories at large within a system. Results and conclusions In exploring functional versus non-function conditions, we argue that it is difficult to find a principled reason for an absolute priority of functional conditions over non-functional conditions. Nevertheless, functional conditions are relatively easier to establish objectively, and surgical intervention has a clear causal effect on treating a functional condition. Considering non-functional conditions that require plastic surgery [i.e., those related to appearance or symptomatic conditions ], we argue that the patient needs to experience some degree of suffering, which must be ‘validated’ in some form by the healthcare system. This validation is required for both functional and non-functional conditions. Functional conditions are validated by distinguishing between statistically normal and abnormal functioning. Similarly, for non-functional conditions, statistical normality represents a potential method for distinguishing between what should and should not be publicly funded. However, we acknowledge that such a concept requires further development. (shrink)

In contrast to standardized guidelines, personalized medicine and person centered care are two notions that have recently developed and are aspiring for more individualized health care for each single patient. While having a similar drive toward individualized care, their sources are markedly different. While personalized medicine stems from a biomedical framework, person centered care originates from a caring perspective, and a wish for a more holistic view of patients. It is unclear to what extent these two concepts can be combined (...) or if they conflict at fundamental or pragmatic levels. This paper reviews existing literature in both medicine and related philosophy to analyze closer the meaning of the two notions, and to explore the extent to which they overlap or oppose each other, in theory or in practice, in particular regarding ethical assumptions and their respective practical implications. (shrink)

There is a need for person-centred approaches and empowerment of staff within the residential care for older people; a movement called ‘culture change’. There is however no single path for achieving culture change. With the aim of increasing understandings about cultural change processes and the promotion of cultural values and norms associated with person-centred practices, this article presents an action research project set on a unit in the Netherlands providing care for older people with dementia. The project is presented as (...) a case study. This study examines what has contributed to the improvement of participation of older people with dementia in daily occupational and leisure activities according to practitioners. Data was collected by participant observation, interviews and focus groups. The results show that simultaneous to the improvement of the older people’s involvement in daily activities a cultural transformation took place and that the care became more person-centred. Spontaneous interactions and responses rather than planned interventions, analysis and reflection contributed to this. Furthermore, it proved to be beneficial that the process of change and the facilitation of that process reflected the same values as those underlying the cultural change. It is concluded that changes arise from dynamic, interactive and non-linear processes which are complex in nature and difficult to predict and to control. Nevertheless, managers and facilitators can facilitate such change by generating movement through the introduction of small focused projects that meet the stakeholders’ needs, by creating conditions for interaction and sense making, and by promoting the new desired cultural values. (shrink)

In recent years, the global need for clinical ethics consultation services (CECS) has increased to address ethical challenges, dilemmas, and moral distress in clinical environments. In Japan, many hospitals have introduced CECS over the past decade, but few such services work effectively because of the small number of consultations. To address this, we propose two proactive ethics consultation methods: inter-professional ethics rounds and patient note reviews. This paper provides a detailed explanation of these methods, complete with scenarios based on actual (...) cases. These methods can make CECS ‘well-functioning’ by shifting the starting points of consultation from consultees to CECS providers. We then examine the impact and value of proactive ethics consultation as well as four critical factors for its success including attitude, positioning, and competency of proactive consultation teams. We believe our suggestions will provide valuable insights for future clinical ethics consultations and stimulate academic debate about what constitutes a ‘well-functioning’ CECS. (shrink)