Tackling disrespect in health care: The relevance of socio-relational equality.

Disrespect in health care often persists despite firm commitments to respectful service provision. This conceptual paper highlights how the ways in which respect and disrespect are characterised can have practical implications for how well disrespect can be tackled. We stress the need to focus explicitly on disrespect (not only respect) and propose that disrespect can usefully be understood as a failure to relate to people as equals. This characterisation is consonant with some accounts of respect but sometimes obscured by a focus on respecting people's autonomy and dignity. Emphasising equality is consistent with connections patients draw between being (dis)respected and (in)equality. It readily accommodates microaggressions as forms of disrespect, helping to understand how and why experiences of disrespect may be unintentional and to explain why even small instances of disrespect are wrong. Our view of disrespect with an emphasis on equality strengthens the demand that health systems take disrespect seriously as a problem of social injustice and tackle it at institutional, not just individual levels. It suggests several strategies for practical action. Emphasising relational equality is not an easy or short-term fix for disrespect, but it signals a direction of travel towards an important improvement ambition.

A wide vocabulary for person-centred care.

Many different words and phrases are used to describe healthcare that treats patients as people. Do terms such as 'person centred', 'patient centred', 'people centred' and 'personalised' mean broadly the same thing or do they refer to distinct concepts? Should we prefer one over the others? In this essay, we set out the value and limitations of some of the different terms used to describe what we broadly refer to as 'person-centred care'. We offer a critical conceptual analysis of the most commonly used words and phrases in this domain, exploring how they differ from, and relate to, one another. We argue that there is value in retaining a wide vocabulary: the distinctive emphasis and connotations of different terms allow us to communicate about this multifaceted area of research and practice with nuance and context sensitivity.

Implementing and evaluating care and support planning: a qualitative study of health professionals' experiences in public polyclinics in Singapore.

BACKGROUND: Two polyclinics in Singapore modified systems and trained health professionals to provide person-centred Care and Support Planning (CSP) for people with diabetes within a clinical trial. We aimed to investigate health professionals' perspectives on CSP to inform future developments. METHODS: Qualitative research including 23 semi-structured interviews with 13 health professionals and 3 co-ordinators. Interpretive analysis, including considerations of how different understandings, enactments, experiences and evaluative judgements of CSP clustered across health professionals, and potential causal links between them. RESULTS: Both polyclinic teams introduced CSP and sustained it through COVID-19 disruptions. The first examples health professionals gave of CSP 'going well' all involved patients who came prepared, motivated and able to modify behaviours to improve their biomedical markers, but health professionals also said that they only occasionally saw such patients in practice. Health professionals' accounts of how they conducted CSP conversations varied: some interpretations and reported enactments were less clearly aligned with the developers' person-centred aspirations than others. Health professionals brought different communication skill repertoires to their encounters and responded variably to challenges to CSP that arose from: the linguistic and educational diversity of patients in this polyclinic context; the cultural shift that CSP involved; workload pressures; organisational factors that limited relational and informational continuity of care; and policies promoting biomedical measures as key indicators of healthcare quality. While all participants saw potential in CSP, they differed in the extent to which they recognised relational and experiential benefits of CSP (beyond biomedical benefits), and their recommendations for continuing its use beyond the clinical trial were contingent on several considerations. Our analysis shows how narrower and broader interpretive emphases and initial skill repertoires can interact with situational challenges and respectively constrain or extend health professionals' ability to refine their skills with experiential learning, reduce or enhance the potential benefits of CSP, and erode or strengthen motivation to use CSP. CONCLUSION: Health professionals' interpretations of CSP, along with their communication skills, interact in complex ways with other features of healthcare systems and diverse patient-circumstance scenarios. They warrant careful attention in efforts to implement and evaluate person-centred support for people with long-term conditions.

Patient Safety and the Question of Dignitary Harms.

Patient safety is a central aspect of healthcare quality, focusing on preventable, iatrogenic harm. Harm, in this context, is typically assumed to mean physical injury to patients, often caused by technical error. However, some contributions to the patient safety literature have argued that disrespectful behavior towards patients can cause harm, even when it does not lead to physical injury. This paper investigates the nature of such dignitary harms and explores whether they should be included within the scope of patient safety as a field of practice. We argue that dignitary harms in health care are-at least sometimes-preventable, iatrogenic harms. While we caution against including dignitary harms within the scope of patient safety just because they are relevantly similar to other iatrogenic harms, we suggest that thinking about dignitary harms can help to elucidate the value of patient safety, and to illuminate the evolving relationship between safety and quality.

Varieties of improvement expertise: Knowledge and contestation in health-care improvement.

The 'improvement' of health care is now established and growing as a field of research and practice. This article, based on qualitative data from interviews with 21 senior leaders in this field, analyses the growth of improvement expertise as not simply an expansion but also a multiplication of 'ways of knowing'. It illustrates how health-care improvement is an area where contests about relevant kinds of knowledge, approaches and purposes proliferate and intersect. One dimension of this story relates to the increasing relevance of sociological expertise-both as a disciplinary contributor to this arena of research and practice and as a spur to reflexive critique. The analysis highlights the threat of persistent hierarchies within improvement expertise reproducing and amplifying restricted conceptions of both improvement and 'better' health care.

Truth and consequences.

In his 1987 paper "Truth or Consequences," Dan Brock describes a deep conflict between the goals and virtues of philosophical scholarship and public policymaking: whereas the former is concerned with the search for truth, the latter must primarily be concerned with promoting good consequences. When philosophers are engaged in policymaking, he argues, they must shift their primary goal from truth to consequences-but this has both moral and methodological costs. Brock's argument exemplifies a pessimistic, but not uncommon, view of the possible shape and nature of applied philosophy. The present paper paints a richer and more optimistic picture. It argues that the difference between theoretical philosophy and applied philosophy is not best understood as a choice between truth and consequences. On the contrary, applied philosophers engage in forms of truth-seeking that are properly concerned with consequences-including the consequences of philosophical practice itself.

Unifying and universalizing Personalised Care? An analysis of a national curriculum with implications for policy and education relating to person-centred care.

OBJECTIVE: To examine the Curriculum of England's Personalised Care Institute as a national initiative to promote person-centred practice. METHOD: Analysis of Curriculum content and discourse RESULTS: The Curriculum describes an educational framework which aspires to unify approaches and universalize provision of Personalised Care. It presents 8 "models and approaches" and 6 "components" within the "whole" of Personalised Care. It locates their unity in an underlying common core repertoire of professional capabilities and values and an anchoring belief in people's strengths, resourcefulness and ability to develop their own solutions with appropriate support. The Curriculum indicates some complexity in the provision of Personalised Care but leaves unanswered questions about the theoretical coherence of the concept. It also neglects some important aspects of person-centredness (especially values beyond empowerment and choice); the implications of entrenched social inequalities and systemic prejudices; and other practical-ethical implementation challenges that can be difficult for health professionals. CONCLUSION: The Curriculum signals a national commitment to person-centred practice, but its practical potential is limited by its neglect of the value tensions and diverse situational challenges involved. PRACTICE IMPLICATIONS: The Curriculum and similar policy-education initiatives could be strengthened by more explicit attention to the normative complexities of person-centred practice.

Vagueness and variety in person-centred care.

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.

Implementing shared decision-making in UK: Progress 2017-2022.

Shared decision making has been on the policy agenda in the UK for at least twelve years, but it lacked a comprehensive approach to delivery. That has changed over the past five years, and we can now see significant progress across all aspects of a comprehensive approach, including leadership at policy, professional and patient levels; infrastructure developments, including the provision of training, tools and campaigns; and practice improvements, such as demonstrations, measurement and coordination. All these initiatives were necessary, but the last, central coordination, would appear to be key to success.

What, how, when and who of trial results summaries for trial participants: stakeholder-informed guidance from the RECAP project.

OBJECTIVE: To generate stakeholder informed evidence to support recommendations for trialists to implement the dissemination of results summaries to participants. DESIGN: A multiphase mixed-methods triangulation design involving Q-methodology, content analysis, focus groups and a coproduction workshop (the REporting Clinical trial results Appropriately to Participants project). SETTING: Phase III effectiveness trials. PARTICIPANTS: A range of participants were included from ongoing and recently completed trials, public contributors, trialists, sponsors, research funders, regulators, ethics committee members. RESULTS: Fewer than half of the existing trial result summaries contained information on the clinical implications of the study results, an item deemed to be of high importance to participants in the Q-methodology study. Priority of inclusion of a thank you message varied depending on whether considering results for individuals or populations. The need for personally responsive modes of sharing trial result summaries was highlighted as important. Ideally, participants should be the first to know of the results with regard to the timing of sharing results summaries but given this can be challenging it is therefore important to manage expectations. In addition to patients, it was identified that it is important to engage with a range of stakeholders when developing trial results summaries. CONCLUSIONS: Results summaries for trial participants should cover four core questions: (1) What question the trial set out to answer?; (2) What did the trial find?; (3) What effect have the trial results had and how will they change National Health Service/treatment?; and (4) How can I find out more? Trial teams should develop appropriately resourced plans and consult patient partners and trial participants on how 'best' to share key messages with regard to content, mode, and timing. The study findings provide trial teams with clear guidance on the core considerations of the 'what, how, when and who' with regard to sharing results summaries.

Talking it better: conversations and normative complexity in healthcare improvement.

In this paper, we consider the role of conversations in contributing to healthcare quality improvement. More specifically, we suggest that conversations can be important in responding to what we call 'normative complexity'. As well as reflecting on the value of conversations, the aim is to introduce the dimension of normative complexity as something that requires theoretical and practical attention alongside the more recognised challenges of complex systems, which we label, for short, as 'explanatory complexity'. In brief, normative complexity relates to the inherent difficulty of deciding what kinds of changes are 'improvements' or, more broadly, what is valuable in healthcare. We suggest that explanatory and normative complexity intersect and that anyone interested in healthcare improvement needs to be sensitive to both. After briefly introducing the idea of normative complexity, we consider some contrasting examples of conversations, reflecting on how they do and might contribute to healthcare quality. We discuss both conversations that are deliberately organised and facilitated ('orchestrated conversations') and more informally occurring and routine conversations. In the first half of the paper, we draw on some examples of orchestrated and routine conversations to open up these issues. In the second half of the paper, we bring some more theoretical lenses to bear on both conversations and normative complexity, summarise what we take to be the value of conversations and draw together some of the implications of our discussion. In summary, we argue that conversations can play a crucial role in negotiating the normative complexity of healthcare quality improvement because of their capacity to hold together a plurality of perspectives, to contribute and respond to emergence and to help underpin institutional conditions for empathy and imagination.

Pushing poverty off limits: quality improvement and the architecture of healthcare values.

BACKGROUND: Poverty and social deprivation have adverse effects on health outcomes and place a significant burden on healthcare systems. There are some actions that can be taken to tackle them from within healthcare institutions, but clinicians who seek to make frontline services more responsive to the social determinants of health and the social context of people's lives can face a range of ethical challenges. We summarise and consider a case in which clinicians introduced a poverty screening initiative (PSI) into paediatric practice using the discourse and methodology of healthcare quality improvement (QI). DISCUSSION: Whilst suggesting that interventions like the PSI are a potentially valuable extension of clinical roles, which take advantage of the unique affordances of clinical settings, we argue that there is a tendency for such settings to continuously reproduce a narrower set of norms. We illustrate how the framing of an initiative as QI can help legitimate and secure funding for practical efforts to help address social ends from within clinical service, but also how it can constrain and disguise the value of this work. A combination of methodological emphases within QI and managerialism within healthcare institutions leads to the prioritisation, often implicitly, of a limited set of aims and governing values for healthcare. This can act as an obstacle to a genuine broadening of the clinical agenda, reinforcing norms of clinical practice that effectively push poverty 'off limits.' We set out the ethical dilemmas facing clinicians who seek to navigate this landscape in order to address poverty and the social determinants of health. CONCLUSIONS: We suggest that reclaiming QI as a more deliberative tool that is sensitive to these ethical dilemmas can enable managers, clinicians and patients to pursue health-related values and ends, broadly conceived, as part of an expansive range of social and personal goods.

Providing trial results to participants in phase III pragmatic effectiveness RCTs: a scoping review.

BACKGROUND: There is an ethical imperative to offer the results of trials to those who participated. Existing research highlights that less than a third of trials do so, despite the desire of participants to receive the results of the trials they participated in. This scoping review aimed to identify, collate, and describe the available evidence relating to any aspect of disseminating trial results to participants. METHODS: A scoping review was conducted employing a search of key databases (MEDLINE, EMBASE, PsycINFO, and the Cumulative Index to Nursing & Allied Health Literature (CINAHL) from January 2008 to August 2019) to identify studies that had explored any aspect of disseminating results to trial participants. The search strategy was based on that of a linked existing review. The evidence identified describes the characteristics of included studies using narrative description informed by analysis of relevant data using descriptive statistics. RESULTS: Thirty-three eligible studies, including 12,700 participants (which included patients, health care professionals, trial teams), were identified and included. Reporting of participant characteristics (age, gender, ethnicity) across the studies was poor. The majority of studies investigated dissemination of aggregate trial results. The most frequently reported mode of disseminating of results was postal. Overall, the results report that participants evaluated receipt of trial results positively, with reported benefits including improved communication, demonstration of appreciation, improved retention, and engagement in future research. However, there were also some concerns about how well the dissemination was resourced and done, worries about emotional effects on participants especially when reporting unfavourable results, and frustration about the delay between the end of the trial and receipt of results. CONCLUSIONS: This scoping review has highlighted that few high-quality evaluative studies have been conducted that can provide evidence on the best ways to deliver results to trial participants. There have been relatively few qualitative studies that explore perspectives from diverse populations, and those that have been conducted are limited to a handful of clinical areas. The learning from these studies can be used as a platform for further research and to consider some core guiding principles of the opportunities and challenges when disseminating trial results to those who participated.

An international core outcome set for evaluating interventions to improve informed consent to clinical trials: The ELICIT Study.

OBJECTIVE: To develop a core outcome set for the evaluation of interventions that aim to improve how people make decisions about whether to participate in randomized controlled trials (of healthcare interventions), the ELICIT Study. STUDY DESIGN: International mixed-method study involving a systematic review of existing outcomes, semi-structured interviews, an online Delphi survey, and a face-to-face consensus meeting. RESULTS: The literature review and stakeholder interviews (n = 25) initially identified 1045 reported outcomes that were grouped into 40 individually distinct outcomes. These 40 outcomes were scored for importance in two rounds of an online Delphi survey (n = 79), with 18 people attending the consensus meeting. Consensus was reached on 12 core outcomes: therapeutic misconception; comfort with decision; authenticity of decision; communication about the trial; empowerment; sense of altruism; equipoise; knowledge; salience of questions; understanding, how helpful the process was for decision making; and trial attrition. CONCLUSION: The ELICIT core outcome set is the first internationally agreed minimum set of outcomes deemed essential to be measured in all future studies evaluating interventions to improve decisions about participating in an randomized controlled trial. Use of the ELICIT core set will ensure that results from these trials are comparable and relevant to all stakeholders. REGISTRATION: COMET database - http://www.comet-initiative.org/Studies/Details/595.

How should the 'privilege' in therapeutic privilege be conceived when considering the decision-making process for patients with borderline capacity?

Therapeutic privilege (TP) is a defence that may be available to doctors who fail to disclose to the patient relevant information when seeking informed consent for treatment if they have a reasonable belief that providing that information would likely cause the patient concerned serious physical or mental harm. In a landmark judgement, the Singapore Court of Appeal introduced a novel interpretation of TP, identifying circumstances in which it might be used with patients who did not strictly lack capacity but might be inclined to refuse recommended treatments. In this paper, we explore the conceptual and practical challenges of this novel interpretation of TP. We propose that more emphasis should be placed on forms of shared and supported decision-making that foster the autonomy of patients with compromised mental capacity while being mindful of the need to safeguard their well-being. The kind of privilege that doctors might need to invoke is one of time and supportive expertise to ensure a flexible, responsive approach calibrated to the individual patients' needs. The provision of such service would extinguish the need for the novel TP proposed by the Singapore Court of Appeal.

Made to Measure: The Ethics of Routine Measurement for Healthcare Improvement.

This paper analyses the ethics of routine measurement for healthcare improvement. Routine measurement is an increasingly central part of healthcare system design and is taken to be necessary for successful healthcare improvement efforts. It is widely recognised that the effectiveness of routine measurement in bringing about improvement is limited-it often produces only modest effects or fails to generate anticipated improvements at all. We seek to show that these concerns do not exhaust the ethics of routine measurement. Even if routine measurement does lead to healthcare improvements, it has associated ethical costs which are not necessarily justified by its benefits. We argue that the practice of routine measurement changes the function of the healthcare system, resulting in an unintended and ethically significant transformation of the sector. It is difficult to determine whether such changes are justified or offset by the benefits of routine measurement because there may be no shared understanding of what is 'good' in healthcare by which to compare the benefits of routine measurement with the goods that are precluded by it. We counsel that the practice of routine measurement should proceed with caution and should be recognised to be an ethically significant choice, rather than an inevitability.

The Patient Activation through Community Empowerment/Engagement for Diabetes Management (PACE-D) protocol: a non-randomised controlled trial of personalised care and support planning for persons living with diabetes.

BACKGROUND: Personalised care and support planning (CSP) has been shown to improve diabetes outcomes, patient experience and provider morale in the care of persons living with diabetes. However, this has not been confirmed in controlled studies. Patient Activation through Community Empowerment/Engagement for Diabetes Management (PACE-D) is a pragmatic controlled trial that evaluates the effectiveness of personalised CSP in persons living with diabetes in the public primary care setting in Singapore. METHODS: Teamlet-empanelled patients with diabetes at four polyclinics are recruited for this study. Participants who attend either of the two Intervention clinics are sent their investigation results in a care planning letter (CPL) to prepare them for the CSP conversation. This conversation is facilitated by a trained CSP practitioner who engages them in discussion of concerns, goals and action plans, and documents their plans for subsequent review. Participants in the two Control clinics will receive standard diabetes care. Participants will complete two or more CSP conversations (Intervention) or regular consultations (Control) at the annual review visits within the 18 months of the study. The sample size is calculated at 1620 participants, with glycated haemoglobin (HbA1c) as the primary outcome measure. Secondary outcome measures include patient activation (as measured by PAM-13) and changes in healthcare utilisation and cost. DISCUSSION: This study is a pragmatic trial that evaluates the effectiveness of personalised CSP in persons living with diabetes in a real world setting. It promises to provide insights with regard to the implementation of this model of care in Singapore and the region. TRIAL REGISTRATION: ClinicalTrials.gov Identifier NCT04288362. Retrospectively registered on 28 February 2020.

Revisiting the equity debate in COVID-19: ICU is no panacea.

Throughout March and April 2020, debate raged about how best to allocate limited intensive care unit (ICU) resources in the face of a growing COVID-19 pandemic. The debate was dominated by utility-based arguments for saving the most lives or life-years. These arguments were tempered by equity-based concerns that triage based solely on prognosis would exacerbate existing health inequities, leaving disadvantaged patients worse off. Central to this debate was the assumption that ICU admission is a valuable but scarce resource in the pandemic context.In this paper, we argue that the concern about achieving equity in ICU triage is problematic for two reasons. First, ICU can be futile and prolong or exacerbate suffering rather than ameliorate it. This may be especially true in patients with COVID-19 with emerging data showing that most who receive access to a ventilator will still die. There is no value in admitting patients with poor prognostic indicators to ICU to meet an equity target when intensive critical care is contrary to their best interests. Second, the focus on ICU admission shifts focus away from important aspects of COVID-19 care where there is greater opportunity for mitigating suffering and enhancing equitable care.We propose that the focus on equity concerns during the pandemic should broaden to include providing all people who need it with access to the highest possible standard of end-of-life care. This requires attention to culturally safe care in the following interlinked areas: palliative care, communication and decision support and advanced care planning.

Some Unresolved Ethical Challenges in Healthcare Decision-Making: Navigating Family Involvement.

Family involvement in healthcare decision-making for competent patients occurs to varying degrees in many communities around the world. There are different attitudes about who should make treatment decisions, how and why. Legal and professional ethics codes in most jurisdictions reflect and support the idea that competent patients should be enabled to make their own treatment decisions, even if others, including their healthcare professionals, disagree with them. This way of thinking contrasts with some cultural norms that put more emphasis on the family as a decision-making entity, in some circumstances to the exclusion of a competent patient. Possible tensions may arise between various combinations of patient, family members and healthcare professionals, and healthcare professionals must tread a careful path in navigating family involvement in the decision-making process. These tensions may be about differences of opinion about which treatment option is best and/or on who should have a say or influence in the decision-making process. While some relevant cultural, legal and policy considerations vary from community to community, there are ethical issues that healthcare professionals need to grapple with in balancing the laws and professional codes on decision-making and the ethical principle of respecting patients and their autonomy. This paper will highlight and propose that a partial resolution to these issues may lie in relational understandings of autonomy, which in principle justify interventions by healthcare professionals and family that support patients in decision-making.

Health professionals' experiences and perspectives on food insecurity and long-term conditions: A qualitative investigation.

Estimates suggest that over 10% of the UK population are affected by food insecurity. International evidence indicates that food insecurity is a risk factor for many long-term health conditions, and can adversely affect people's ability to manage existing conditions. Food insecurity is thus not only a serious social concern but also a healthcare issue requiring the attention of UK health professionals. An exploratory qualitative study was undertaken to investigate the experiences and views of health professionals in north east Scotland, with a particular focus on support for people with long-term conditions whom they believed were affected by food insecurity. Two focus groups and nine semi-structured interviews were undertaken with a total of 20 health professionals between March and July 2016. Thematic analysis generated three main themes. The health professionals had (a) diverse levels of understanding and experience of food insecurity, but between them identified a range of (b) negative impacts of food insecurity on condition-management, especially for diet dependent conditions or medication regimes, and for mental health. Even for those health professionals more familiar with food insecurity, there were various (c) practical and ethical uncertainties about identifying and working with food insecure patients (it could be difficult to judge, for example, whether and how to raise the issue with people, to tailor dietary advice to reflect food insecurity, and to engage with other agencies working to address food insecurity). This study indicates that health professionals working with food insecure patients have learning and support needs that warrant further investigation. Debates about health professionals' responsibilities, and interventions to guide and support health professionals, including tools that might be used to screen for food insecurity, must also reflect the diverse lived needs and values of people who experience food insecurity.