How and why do doctors communicate diagnostic uncertainty: An experimental vignette study.

BACKGROUND: Diagnostic uncertainty is common, but its communication to patients is under-explored. This study aimed to (1) characterise variation in doctors' communication of diagnostic uncertainty and (2) explore why variation occurred. METHODS: Four written vignettes of clinical scenarios involving diagnostic uncertainty were developed. Doctors were recruited from five hospitals until theoretical saturation was reached (n = 36). Participants read vignettes in a randomised order, and were asked to discuss the diagnosis/plan with an online interviewer, as they would with a 'typical patient'. Semi-structured interviews explored reasons for communication choices. Interview transcripts were coded; quantitative and qualitative (thematic) analyses were undertaken. RESULTS: There was marked variation in doctors' communication: in their discussion about differential diagnoses, their reference to the level of uncertainty in diagnoses/investigations and their acknowledgement of diagnostic uncertainty when safety-netting. Implicit expressions of uncertainty were more common than explicit. Participants expressed both different communication goals (including reducing patient anxiety, building trust, empowering patients and protecting against diagnostic errors) and different perspectives on how to achieve these goals. Training in diagnostic uncertainty communication is rare, but many felt it would be useful. CONCLUSIONS: Significant variation in diagnostic uncertainty communication exists, even in a controlled setting. Differing communication goals-often grounded in conflicting ethical principles, for example, respect for autonomy versus nonmaleficence-and differing ideas on how to prioritise and achieve them may underlie this. The variation in communication behaviours observed has important implications for patient safety and health inequalities. Patient-focused research is required to guide practice. PATIENT OR PUBLIC CONTRIBUTION: In the design stage of the study, two patient and public involvement groups (consisting of members of the public of a range of ages and backgrounds) were consulted to gain an understanding of patient perspectives on the concept of communicating diagnostic uncertainty. Their feedback informed the formulations of the research questions and the choice of vignettes used.

Creating and administering video vignettes for a study examining the communication of diagnostic uncertainty: methodological insights to improve accessibility for researchers and participants.

BACKGROUND: Studying clinician-patient communication can be challenging, particularly when research seeks to explore cause-and-effect relationships. Video vignettes - hypothetical yet realistic scenarios - offer advantages to traditional observational approaches by enabling standardisation and manipulation of a clinician-patient encounter for assessment by participants. While published guidelines outline stages to create valid video vignette studies, constructing high quality vignettes which are accessible to a wide range of participants and feasible to produce within time and budget restraints remains challenging. Here, we outline our methods in creating valid video vignettes to study the communication of diagnostic uncertainty. We aim to provide practically useful recommendations for future researchers, and to prompt further reflection on accessibility issues in video vignette methodology. METHODS: We produced four video vignettes for use in an online study examining the communication of diagnostic uncertainty. We followed established guidelines for vignette production, with specific consideration of how these might be applied pragmatically to save time and resources. Scripts were pilot-tested with 15 laypeople, and videos with 14 laypeople; pilot-testing involved both quantitative and qualitative analysis. RESULTS AND DISCUSSION: We demonstrate the usefulness of existing guidelines, while also determining that vignette production need not necessarily be expensive or time-consuming to be valid. Our vignettes were filmed using an iPhone camera, and featured a physician rather than a professional actor; nonetheless, pilot-testing found them to be internally and externally valid for experimental use. We thus propose that if care is taken in initial script development and if pragmatic choices are made regarding filming techniques and pilot-testing, researchers can produce valid vignettes within reasonable time and budget restraints. We also suggest that existing research fails to critically examine the potential benefits and harms of online video vignette methodology, and propose that further research should consider how it can be adapted to be inclusive of those from underserved backgrounds. CONCLUSIONS: Researchers creating video vignette studies can adapt the video vignette development process to suit time and budget constraints, and to make best use of available technology. Online methods may be harnessed to increase participant accessibility, but future research should explore more inclusive vignette design.

What is in the toolkit (and what are the tools)? How to approach the study of doctor-patient communication.

Doctor-patient communication is important, but is challenging to study, in part because it is multifaceted. Communication can be considered in terms of both the aspects of the communication itself, and its measurable effects. These effects are themselves varied: they can be proximal or distal, and can focus on subjective measures (how patients feel about communication), or objective measures (exploring more concrete health outcomes or behaviours). The wide range of methodologies available has resulted in a heterogeneous literature which can be difficult to compare and analyse. Here, we provide a conceptual approach to studying doctor-patient communication, examining both variables which can controlled and different outcomes which can be measured. We present methodologies which can be used (questionnaires, semistructured interviews, vignette studies, simulated patient studies and observations of real interactions), with particular emphasis on their respective logistical advantages/disadvantages and scientific merits/limitations. To study doctor-patient communication more effectively, two or more different study designs could be used in combination. We have provided a concise and practically relevant review of the methodologies available to study doctor-patient communication to give researchers an objective view of the toolkit available to them: both to understand current research, and to conduct robust and relevant studies in the future.

The frontiers of medical negligence and diagnosis: an interview-based analysis.

While errors in medical diagnosis are common and often litigated, the different dimensions of diagnosis-formation, communication, recording-have received much less legal attention. When the process of diagnosis is differentiated in this way, new and contentious legal questions emerge that challenge the appropriateness of the Bolam/Bolitho standard. To explore these challenges, we interviewed 31 solicitors and barristers and asked them: (i) whether Montgomery should apply to information about alternative diagnoses; and (ii) whether the Bolam/Bolitho standard should be rejected in 'pure diagnosis' cases. Our qualitative analysis of the interviews sheds light not only on the two questions posed, but also on three cross-cutting themes. First, Bolam/Bolitho is criticised on two grounds that are often conflated: its paternalism for patients and its deference to medical professionals. Second, adopting different standards for different aspects of treatment and diagnosis may be justified in principle, but it can sometimes be difficult or not make sense in practice. Third, new conceptions of patients, doctors, and courts are being articulated in terms of rights or responsibilities over risks. In mapping these issues at the frontiers of medical negligence, this empirical study identifies potential pressure points for future legal developments.

In defence of our model for just healthcare systems: why an explicit philosophy is needed in addition to the law, and how Scanlon helps derive just policies.

In a recent response to our paper on developing a philosophical framework to guide the design and delivery of a just health service, Sarela raises several objections. We feel that although Sarela makes points which are worthy of discussion, his critique does not undermine either the need for, or the worth of, our proposed model. First, the law does not negate the need for ethics in determining just healthcare policy. Reliance on legal processes can drive inappropriate focus on ensuring policies avoid judicial review, as opposed to ensuring they are truly just; the law affords protection against unjust policies but does not put a commitment to avoiding them at the heart of policy-making. We defend the need for Scanlonian supplementation by emphasising the practical value of adding a step based on reasonable rejection, particularly in ensuring that the views of vulnerable stakeholders are robustly considered. We discuss the similarities and differences between the work of Daniels and Sen in considering the relationship between health and opportunity, concluding that Sen's capability approach is both valuable and compatible with our proposed model. Finally, the practical use of our model requires consideration of what constitutes a reasonable person. Our model is explicitly intended to help develop a healthcare system which is just to all its users. With this in mind, we suggest that those involved in decision-making should meet Scanlon's definition of reasonable: they should be motivated to justify their actions to, and seek agreement with, others.

Towards cataloguing and characterising advance care planning and end-of-life care resources.

BACKGROUND: Resources for healthcare professionals, patients and those important to them relating to planning and coordinating treatment and care at the end of life are abundant, and can be difficult to navigate. However, they have not been systematically collated or catalogued in terms of their purpose, scope or intended audience. AIM: To collate, categorise and characterise advance care planning and end-of-life treatment and care (EoLT + C) resources directed towards healthcare professionals, patients and their families. METHODS: Rapid review and thematic synthesis of resources available in the United Kingdom. Google searches and reviews of websites belonging to selected organisations that develop and publish materials relating to EoLT + C, and advance care planning were used. Materials were included if they were intended for those over 18 living in the UK and pertained to five domains of EoLT + C: identifying those approaching end of life; accessing EoLT + C services; conducting important conversations about EoLT + C and preferences; advance care planning, including recording of preferences and plans; and ensuring that plans and preferences are accessed and used by health and social care services. RESULTS: 246 resources directed at healthcare professionals, patients and their families were identified, collated, catalogued and made internationally available for clinicians, researchers, patients and the public. 61 were classified as interactive, providing decision support in EoLT + C that went beyond simply providing information. Of these, there was notable content overlap among tools for identifying patients in their last year of life. There was variation in the development of tools across all domains of end-of-life care by geography and patient group. Few interactive resources integrated seamlessly with a digital interface or healthcare provider workflows. Incentives for the adoption of best-practice appeared rare. CONCLUSIONS: We present a repeatable and scalable approach to the cataloguing and characterisation of palliative care resources. The identified resources will be of benefit not only to those in the UK but to those in other countries, developing or evaluating their own resources for aiding professionals and patients to plan and deliver excellent treatment and care at the end of life.

Differentiating Negligent Standards of Care in Diagnosis.

Diagnosis lies at the heart of the medical encounter, yet it has received much less attention than treatment. It is widely assumed that negligent diagnosis claims should be governed by the Bolam test, but we demonstrate that this is not always the case. First, we disaggregate the diagnostic process into three different acts: forming the diagnosis, communicating it to the patient, and recording it. Second, we consider alternatives to Bolam for defining negligence, including less deferential profession-led standards, patient-led standards, and even a reasonable person standard. Third, bringing together these distinctions-within the diagnostic process, and between standards of care-we reveal the unappreciated complexity of negligent diagnosis. Analysing the standard of care that might apply to the three different acts in the diagnostic process, we identify reasons to think that Montgomery should apply to the communication of a diagnosis. We also argue that even in areas where the law is well-established, such as the application of Bolam to the formation of a diagnosis, challenging questions arise that require further attention. Throughout, the framework and analysis that we develop have significant implications for a set of negligence cases, as well as for medical education, clinical guidelines, and patient care.

Diagnostic uncertainty in primary care: what is known about its communication, and what are the associated ethical issues?

BACKGROUND: Diagnostic uncertainty (DU) in primary care is ubiquitous, yet no review has specifically examined its communication, or the associated ethical issues. OBJECTIVES: To identify what is known about the communication of DU in primary care and the associated ethical issues. METHODS: Systematic review, critical interpretive synthesis and ethical analysis of primary research published worldwide. Medline, Embase, Web of Science and SCOPUS were searched for papers from 1988 to 2020 relating to primary care AND diagnostic uncertainty AND [ethics OR behaviours OR communication]. Critical interpretive synthesis and ethical analysis were applied to data extracted. RESULTS: Sixteen papers met inclusion criteria. Although DU is inherent in primary care, its communication is often limited. Evidence on the effects of communicating DU to patients is mixed; research on patient perspectives of DU is lacking. The empirical literature is significantly limited by inconsistencies in how DU is defined and measured. No primary ethical analysis was identified; secondary analysis of the included papers identified ethical issues relating to maintaining patient autonomy in the face of clinical uncertainty, a gap in considering the direct effects of (not) communicating DU on patients, and considerations regarding over-investigation and justice. CONCLUSIONS: This review highlights significant gaps in the literature: there is a need for explicit ethical and patient-centred empirical analyses on the effects of communicating DU, and research directly examining patient preferences for this communication. Consensus on how DU should be defined, and greater research into tools for its measurement, would help to strengthen the empirical evidence base.

Doctors have an ethical obligation to ask patients about food insecurity: what is stopping us?

Inadequate diet is the leading risk factor for morbidity and mortality worldwide. However, approaches to identifying inadequate diets in clinical practice remain inconsistent, and dietary interventions (on both individual and public health policy levels) frequently focus on facilitating 'healthy choices', with limited emphasis on structural constraints. We examine the ethical implications of introducing a routine question in the medical history about ability to access food. Not collecting data on food security means that clinicians are unable to identify people who may benefit from support on an individual level, unable to consider relevant dietary risk factors for disease and disease progression and unable to monitor population trends and inequalities in dietary access in order to design effective policy interventions. We argue that the current lack of routine screening for food insecurity is inconsistent with our approach to other health behaviours (eg, smoking and alcohol use), as well as with doctors' frequent informal role as gatekeepers to the food aid system, and recent calls for governmental action on food insecurity and health inequalities from individual clinicians and professional bodies. Potential ethical barriers to asking patients about food security are addressed, including concerns about stigma, limiting autonomy, fair resource allocation, unclear professional remits and clinicians' ability to offer effective interventions. We suggest that there is an ethical imperative for doctors to ask patients about their ability to access healthy food. Gathering this data provides a valuable first step in re-framing the social determinants of health as modifiable risks, rather than inevitable inequities.

Family members, ambulance clinicians and attempting CPR in the community: the ethical and legal imperative to reach collaborative consensus at speed.

Here we present the personal perspectives of two authors on the important and unfortunately frequent scenario of ambulance clinicians facing a deceased individual and family members who do not wish them to attempt cardiopulmonary resuscitation. We examine the professional guidance and the protection provided to clinicians, which is not matched by guidance to protect family members. We look at the legal framework in which these scenarios are taking place, and the ethical issues which are presented. We consider the interaction between ethics, clinical practice and the law, and offer suggested changes to policy and guidance which we believe will protect ambulance clinicians, relatives and the patient.

Custodians of Information: Patient and Physician Views on Sharing Medical Records in the Acute Care Setting.

In the UK, in the acute in-patient setting, the only information that a patient receives about their medical care is verbal; there is no routine patient access to any part of the medical record. It has been suggested that this should change, so that patients can have real-time access to their notes, but no one has previously explored patient or clinician views on the impact this might have. Semi-structured interviews were conducted with 12 patients and 13 doctors about their experience of information sharing in the context of the acute care setting, and their views on sharing all of the medical records, or a summary note. Interviews were transcribed verbatim, double coded and analyzed using the constant comparative method. Patients were not given written information and did not ask questions even when they wanted to know things. Patients and doctors supported increased sharing of written information, but the purpose of the medical record - and the risks and benefits of sharing it - were disputed. Concerns included disclosing uncertainty, changing what was written, and causing patient anxiety. Benefits included increased transparency. Use of a summary record was welcomed as a way to empower patients, while doctors felt they had a responsibility to curate what information was given and when. A clinical summary for patients would be of benefit to doctors, nurses, patients and their relatives. It should be designed to reflect the needs of all users, and evaluated to consider patient-relevant outcomes and resource implications.

Integrating philosophy, policy and practice to create a just and fair health service.

To practise 'fairly and justly' a clinician must balance the needs of both the many and the few: the individual patient in front of them, and the many unseen patients in the waiting room, and in the county. They must consider the immediate clinical needs of those in the present, and how their actions will impact on future patients. The good medical practice guidance 'Make the care of your patient your first concern' provides no guidance on how doctors should act when they care for multiple patients with conflicting needs. Moreover, conflicting needs extend far past simply those between different patients. At an organisational level, financial obligations must be balanced with clinical ones; the system must support those who work within it in a variety of roles; and, finally, in order for a healthcare service to be sustainable, the demands of current and future generations must be balanced.The central problem, we propose, is that there is no shared philosophical framework on which the provision of care or the development of health policy is based, nor is there a practical, fair and transparent process to ensure that the service is equipped to deal justly with new challenges as they emerge. Many philosophers have grappled with constructing a set of principles which would lead to a 'good' society which is just to different users; prominent among them is Rawls.Four important principles can be derived using a Rawlsian approach: equity of access, distributive justice, sustainability and openness. However, Rawls' approach is sometimes considered too abstract to be applied readily to policymaking; it does not provide clear guidance for how individuals working within existing institutions can enact the principles of justice. We therefore combine the principles derived from Rawls with Scanlonian contractualism: by demanding that decisions are made in a way which cannot be 'reasonably rejected' by different stakeholders (including 'trustees' for those who cannot represent themselves), we ensure that conflicting needs are considered robustly.We demonstrate how embedding this framework would ensure just policies and fair practice. We illustrate this by using examples of how it would help prevent injustice among different socioeconomic groups, prevent intergenerational injustice and prevent injustice in a crisis, for example, as we respond to new challenges such as COVID-19.Attempts to help individual doctors practise fairly and justly throughout their professional lives are best focused at an institutional or systemic level. We propose a practical framework: combining Scanlonian contractualism with a Rawlsian approach. Adopting this framework would equip the workforce and population to contribute to fair policymaking, and would ultimately result in a healthcare system whose practice and policies-at their core-were just.

A systematic review of patient access to medical records in the acute setting: practicalities, perspectives and ethical consequences.

BACKGROUND: Internationally, patient access to notes is increasing. This has been driven by respect for patient autonomy, often recognised as a primary tenet of medical ethics: patients should be able to access their records to be fully engaged with their care. While research has been conducted on the impact of patient access to outpatient and primary care records and to patient portals, there is no such review looking at access to hospital medical records in real time, nor an ethical analysis of the issues involved in such a change in process. METHODS: This study employed a systematic review framework in two stems, to integrate literature identified from two searches: Medline, CINAHL and Scopus databases were conducted, (for (1) hospitalised patients, patient access to records and its effects on communication and trust within the doctor-patient relationship; and (2) patient access to medical records and the ethical implications identified). The qualitative and quantitative results of both searches were integrated and critically analysed. RESULTS: 3954 empirical and 4929 ethical studies were identified; 18 papers representing 16 studies were identified for review (12 empirical and 6 ethical). The review reveals a consensus that our current approach to giving information to patients - almost exclusively verbally - is insufficient; that patient access to notes is a welcome next step for patient-centred care, but that simply allowing full access, without explanation or summary, is also insufficient. Several ethical implications need to be considered: increased information could improve patient trust and knowledge but might transfer an (unwelcome) sense of responsibility to patients; doctors and patients have conflicting views on how much information should be shared and when; sharing written information might increase the already significant disparity in access to health care, and have unforeseen opportunity costs. The impact on medical practice of sharing notes in real time will also need to be evaluated. CONCLUSIONS: The review presents encouraging data to support patient access to medical notes. However, sharing information is a critical part of clinical practice; changing how it is done could have significant empirical and ethical impacts; any changes should be carefully evaluated.

U.K. Intensivists' Preferences for Patient Admission to ICU: Evidence From a Choice Experiment.

OBJECTIVES: Deciding whether to admit a patient to the ICU requires considering several clinical and nonclinical factors. Studies have investigated factors associated with the decision but have not explored the relative importance of different factors, nor the interaction between factors on decision-making. We examined how ICU consultants prioritize specific factors when deciding whether to admit a patient to ICU. DESIGN: Informed by a literature review and data from observation and interviews with ICU clinicians, we designed a choice experiment. Senior intensive care doctors (consultants) were presented with pairs of patient profiles and asked to prioritize one of the patients in each task for admission to ICU. A multinomial logit and a latent class logit model was used for the data analyses. SETTING: Online survey across U.K. intensive care. SUBJECTS: Intensive care consultants working in NHS hospitals. MEASUREMENTS AND MAIN RESULTS: Of the factors investigated, patient's age had the largest impact at admission followed by the views of their family, and severity of their main comorbidity. Physiologic measures indicating severity of illness had less impact than the gestalt assessment by the ICU registrar. We identified four distinct decision-making patterns, defined by the relative importance given to different factors. CONCLUSIONS: ICU consultants vary in the importance they give to different factors in deciding who to prioritize for ICU admission. Transparency regarding which factors have been considered in the decision-making process could reduce variability and potential inequity for patients.

Too much medicine: not enough trust?

As many studies around the theme of 'too much medicine' attest, investigations are being ordered with increasing frequency; similarly the threshold for providing treatment has lowered. Our contention is that trust (or lack of it) is a significant factor in influencing this, and that understanding the relationship between trust and investigations and treatments will help clinicians and policymakers ensure ethical decisions are more consistently made. Drawing on the philosophical literature, we investigate the nature of trust in the patient-doctor relationship, arguing that at its core it involves a transfer of discretion. We show that there is substantial empirical support for the idea that more trust will reduce the problem of too much medicine. We then investigate ways in which trust can be built, concentrating on issues of questioning, of acknowledging uncertainty and of shouldering responsibility for it. We argue that offering investigations or treatments as a way of generating trust may itself be an untrustworthy way of proceeding, and that healthcare systems should provide the institutional support for facilitating continuity, questioning and the entrusting of uncertainty.

Conflicting demands on a modern healthcare service: Can Rawlsian justice provide a guiding philosophy for the NHS and other socialized health services?

We explore whether a Rawlsian approach might provide a guiding philosophy for the development of a healthcare system, in particular with regard to resolving tensions between different groups within it. We argue that an approach developed from some of Rawls' principles - using his 'veil of ignorance' and both the 'difference' and 'just savings' principles which it generates - provides a compelling basis for policy making around certain areas of conflict. We ask what policies might be made if those making them did not know if one was patient, doctor, nurse or manager - in this generation or the next. We first offer a brief summary of Rawls' approach and how we intend to extrapolate from it. We examine how this adapted Rawlsian framework could be applied to specific examples of conflict within healthcare; we demonstrate how this framework can be used to develop a healthcare service which is both sustainable (in its training and treatment of staff, and in encouraging research and innovation) and open (to protect the powers and opportunities of those using the health service). We conclude that while Rawls' approach has previously been rejected as a means to address specific healthcare decisions, an adapted veil of ignorance can be a useful tool for the consideration of how a just health service should be constructed and sustained. Turning the theoretical into the practical (and combining Rawls' thought experiment with Scanlonian contractarianism), managers, doctors, patients, carers and nurses could come together and debate conflicting issues behind a hypothetical veil.

Institute of Medical Ethics Guidelines for confirmation of appointment, promotion and recognition of UK bioethics and medical ethics researchers.

This document is designed to give guidance on assessing researchers in bioethics/medical ethics. It is intended to assist members of selection, confirmation and promotion committees, who are required to assess those conducting bioethics research when they are not from a similar disciplinary background. It does not attempt to give guidance on the quality of bioethics research, as this is a matter for peer assessment. Rather it aims to give an indication of the type, scope and amount of research that is the expected in this field. It does not cover the assessment of other activities such as teaching, policy work, clinical ethics consultation and so on, but these will be mentioned for additional context. Although it mentions the UK's Research Excellence Framework (REF), it is not intended to be a detailed analysis of the place of bioethics in the REF.