Zoe Fritz

There is a widespread perception among academics, doctors and patients that the common law can effectively drive the development and incorporation of patients’ autonomy-based rights into medical practice. However, there is reason to doubt that this is correct. We present a critical analysis of this view, prompted by themes that emerged from interviews with n=31 lawyers and n=24 doctors as part of a larger interdisciplinary study. We focus on the limitations of case law in driving autonomy-respecting clinical practice. Part I examines how the development and impact of decided cases is dominated by practical and economic considerations. It also considers the lack of understanding of case law among clinicians and the extent to which this limits its ability to drive change. Part II sets out our reasons for treating these limitations as a cause for concern. In Part III, we conclude by considering different levers for supporting case law in creating or confirming autonomy-respecting norms in medical practice, suggesting ways in which these might be developed further. We argue that clinical negligence litigation is important as a guide to clinical practice and a means of enforcing autonomy-based patient rights but that it cannot be relied upon to drive changes in practice. Both professional guidance and legislation can augment case law but, for them to be effective, proper communication between doctors and legislators, courts, lawyers and insurance organizations is essential.

Background/aims Although diagnostic uncertainty is common, patient-focused research examining its communication is lacking. We aimed to determine patient preferences for the communication of diagnostic uncertainty, and examine the effects of such communication on patients. Methods We applied an empirical ethics approach, integrating the data collected with ethical analysis to form normative recommendations about diagnostic uncertainty communication. In this randomised crossover study, n=111 members of the public sequentially watched two video vignettes depicting either high or low communicated diagnostic uncertainty, in one of two clinical scenarios. After watching videos, participants completed online questionnaires. Primary outcome was preferred video (high vs low communicated uncertainty); secondary outcomes included satisfaction, trust, worry and understanding. Quantitative data were analysed using logistic regression and a linear mixed effects model; qualitative data were analysed thematically. Results Quantitative analysis demonstrated that participants preferred greater diagnostic uncertainty communication, even though these vignettes were more worrying. Qualitative data revealed heterogeneous participant views justifying their communication preferences. These data raise issues relating to how doctors might balance harms versus benefits in diagnostic uncertainty communication and how doctors might communicate in the face of heterogeneous patient information preferences. Conclusions We argue that doctors should err on the side of greater diagnostic uncertainty communication: to not do so (eg, based on benign paternalistic ideas about avoiding patient worry) or to do so variably (eg, based on unevidenced assumptions about patient information preferences) risks depriving patients of information they may value and may create or exacerbate inequalities.

Doctors are often motivated by a desire to avoid causing their patients worry. In this paper, we provide a defence of disclosing diagnostic uncertainty information to patients, even if such disclosures are worrying. We first consider whether making a patient worry harms them, arguing that worry can be harmful in some—but not all—situations. Although worry is an aversive emotion, sometimes, worry can be beneficial (e.g., if the worry drives adaptive behaviours that are ultimately good for the patient's well‐being). In contrast, worry that is excessive, or is related to events outside the patient's control, can be considered harmful. Even if worry is harmful, communicating worrying information can still sometimes be justified—for example, by applying a consequentialist harm–benefit analysis to consider whether the other benefits of the disclosure (broadly defined) might outweigh the harm created by the worry. We summarise the growing empirical evidence that suggests that patients often prefer their doctors to communicate transparently throughout the diagnostic process, even if the acknowledgement of serious but uncertain diagnoses induces some worry. We do, however, note the difficulty in predicting how an individual patient will respond to the disclosure of potentially worrying information (as the preference for greater communication of diagnostic uncertainty may not be universal). We conclude that a holistic consideration of the expected consequences of communication—including self‐assessment by the doctor to avoid unwitting bias or unwarranted projection of their own values—often supports the communication of diagnostic uncertainty information, even if it worries the patient.

Medical ethics is not known for being a fast-paced discipline; many of the principles we draw on are 2000 years old. And yet, during John McMillan’s 7 -year tenure as editor of the Journal of Medical Ethics ( JME ), the journal has changed a great deal and has in turn changed the discipline. The issues discussed and the ethical concepts in play have broadened while the purpose itself has been refined to publish excellent medical ethics articles that are both philosophically sound and of practical use to clinicians, patients and policy makers. Under his leadership, the journal remained committed to the idea that bioethics is not merely an academic exercise but a normative enterprise—concerned, at its core, with how we ought to respond to the ethical challenges that arise in medicine, science and public life. John’s vision of good bioethics is rooted in a belief that philosophical clarity and real-world relevance should not be seen as competing aims but as mutually reinforcing. As he argued in a 2018 editorial, good medical ethics is defined not just by its analytic sharpness or theoretical sophistication but by how well it is framed, how transparent it is about its normative commitments and how seriously it takes engagement with diverse perspectives.1 For John, good medical ethics needs to be open to input from law, social science and clinical experience but without losing sight of the responsibility to make reasoned ethical judgments. Good medical ethics needs to take a normative stand. In this spirit, John has encouraged work that grapples with moral complexity without retreating into abstraction and that draws on a wide range of disciplinary tools while maintaining a clear normative focus. He has also been attentive to how bioethical arguments are presented—not only in terms of structure and clarity but also in terms of …

The suitability of doctors as agents of assisting dying remains debated, although it is common in many jurisdictions, and forms part of the proposed assisted dying legislation for England and Wales. We examine the established philosophical and legal role of doctors in England and Wales and compare it to the active role required of doctors under proposed assisted dying legislation. For clarity, we refer to the latter role as ‘assisted dying practitioner’ (ADP). We interrogate two common claims: that (a) the role of doctors and ADPs holds normative conceptual analogy by virtue of shared goals to uphold autonomy and reduce suffering and (b) the practical skills required of ADPs are specific and exclusive to a doctor’s training. Examination reveals that neither claim is justified and, despite both roles prioritising patient welfare, identifies significant conflict between their primary goals. The role of an ADP is philosophically and legally singular. To add a duty to the role of the doctor which is antithetical to their overall goal of cure and disease prevention disrupts the defining characteristic of being a doctor: this may have repercussions on who applies to medicine, how doctors are trained, interact with patients and are regulated. We do not advocate for or against assisted dying but propose that if it is to be taken forward in England and Wales, society would be more appropriately served by considering the role of an ADP as a novel profession whose goals, competencies, research base and regulation can be established independently.

The editors of the _Journal of Medical Ethics_ support the call of the UK Health Alliance on Climate for urgent action to ensure that the current Conference of the Parties to the United Nations Framework Convention on Climate Change ‘finally delivers climate justice for Africa and vulnerable countries’. 1 As they note ‘Africa has suffered disproportionately although it has done little to cause the crisis’. The burden of climate change has thus far fallen disproportionately on Global South countries. The monsoon in Pakistan this year killed over 1100 people and the public health implications of the flooding might affect the health of over 5 million people. 2 The South Asian monsoon impacts the lives of a billion people and the flooding associated with wet seasons is likely to occur eight times more frequently in future years than at present. 3 For many pacific islands such as Kiribati,...

We have all become used to the rapid change around us, and with it, the shifting landscape of medical ethics. It appears, however, that the acceleration phase of change in biomedical sciences is only just beginning, and we need to be prepared for new challenges ahead. This issue of the journal considers several of them: in epigenome editing, 1 in bioprinting 2 and in cryonics. 3 With all of these developments, we need to be doing our ethical thinking proactively rather than reactively; and we need to consider not only what we think the ethical problems might be but what frameworks we have for arguing how we should address them. There are several approaches that could be taken 4 each with their own advantages and limitations. The most fun—and the one we are perhaps best at—is to consider hypothetical scenarios, the ethical controversies associated with...

Our topic here is uncertainty, especially as this arises in medicine. We are concerned with the uncertainty of diagnosis and of prognosis, and about how this should be communicated and shared between a doctor and patient. We are concerned with the idea that the doctor might rightly take responsibility for some of that uncertainty, in the sense that they may manage it when the patient is unwilling or unable to do so. And we are concerned with the implications that this has for informed consent, for shared decision making, and for other normative dimensions of the doctor–patient relationship. Most centrally we argue that it is best understood, not in terms of informed consent, but in terms of informed trust.

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 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, 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. No data are available.

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.

With new technologies come new ethical challenges. Often, we can apply previously established principles, even though it may take some time to fully understand the detail of the new technology - or the questions that arise from it. The International Commission on Radiological Protection, for example, was founded in 1928 and has based its advice on balancing the radiation exposure associated with X-rays and CT scans with the diagnostic benefits of the new investigations. They have regularly updated their advice as evidence has accumulated and technologies have changed,1 and have been able to extrapolate from well-established ethical principles. Other new technologies lend themselves less well to off-the-peg ethical solutions. In several articles in this edition the ethical challenges associated with the use of artificial intelligence in medicine are addressed. Although multiple ethical codes and guidelines have been written on the use and development of AI, Hagendorf noted that many of them reiterated a ‘ deontologically oriented, action-restricting ethic based on universal abidance of principles and rules’. 2 Applying pre-existing ethical frameworks to artificial intelligence is problematic for several reasons. In particular, AI has two characteristics which are very different from the current clinical practice on which traditional medical ethics are based: 1. The so called ‘black box’ of deep learning, whereby a deep neural network is trained to iteratively adapt to make …

Both ethicists and lawyers accept that a provider – be it a researcher or a clinician – should provide sufficient information for a reasonable person to make an informed decision about whether they wish to go ahead with the proposed intervention or treatment.1 They are bound to do so both because they have an ethical responsibility to preserve the individual’s autonomous decision making, and, in many countries, because the law obliges them to. In this month’s issue of the JME, three articles tackle ethical issues relating to consent in different contexts. Overarching these analyses is the pragmatic question of whether the process of taking consent in itself might alter the outcomes, and whether, in doing so, it can undermine the initial therapeutic or research goal – so creating another ethical question of what to prioritise. Psilocybin is entering Phase III trials to evaluate its effect on treatment resistant depression and cancer related depression and anxiety; earlier trials have shown sustained symptom reduction in these populations. Smith and Sisti examine whether a form of enhanced consent is ethically required for these drugs.2 They explore how to adequately consent for ‘therapeutic touch’ in a future altered state; the rare but significant mental health risks including trauma re-exposure; and the potential for a personality change given the intense experiences which many subjects have reported. They illustrate the potential for personality change with an example regarding the spiritual experiences which can occur with serotonergic psychedelics, and suggest that ‘agnostic or atheist patients may take the development of a newfound sense of spirituality or belief in God to …

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.

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.

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, 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.

BackgroundInternationally, 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.MethodsThis 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.Results3954 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.ConclusionsThe 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.

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.

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, it is not intended to be a detailed analysis of the place of bioethics in the REF.

Since their introduction as ‘no code’ in the 1980s and their later formalisation to ‘do not resuscitate’ orders, such directions to withhold potentially life-extending treatments have been accompanied by multiple ethical issues. The arguments for when and why to instigate such orders are explored, including a consideration of the concept of futility, allocation of healthcare resources, and reaching a balance between quality of life and quality of death. The merits and perils of discussing such decisions with patients and/or their relatives are reviewed and the unintended implications of ‘do not attempt resuscitation’ orders are examined. Finally, the paper explores some alternative methods to approaching the resuscitation decision, and calls for empirical evaluation of such methods that may reduce the ethical dilemmas physicians currently face

Background Doctors and the Sri Lanka Medical Association recognise the importance of do not attempt cardiopulmonary resuscitation decisions and disclosure; however, few previous studies exist examining these practices in Sri Lanka. Resuscitation decisions have seen significant changes in the UK in recent years, with a legal imperative for clear communication and a move to understand patients’ preferred outcomes before recommending clinical guidance. Methods Participants from two Sri Lankan hospitals were selected purposively to represent a range of specialties and seniorities for semi-structured interview. Results Fifteen participants of varying seniorities were recruited. Practice of do not resuscitate and informing patients is highly variable; there is no definitive guidance published on best practice of these issues in Sri Lanka. Participants felt that inpatients were generally not aware of their medical conditions or treatments. With the poor social and palliative care service provision in Sri Lanka comes a pressure to involve families in the patient care, particularly at the end of life. This feeds into a culture where patient autonomy plays a subordinate role to family involvement. Participants understand the ethical need for do not resuscitate, however, it is viewed to be a consideration for when the patient is close to death. Conclusion Do not resuscitate does not appear to be a prominent feature of end-of-life care in Sri Lanka and thus consideration of the appropriateness of resuscitation is commonly left late in a patient’s deterioration. Education, inclination and respect for doctors are suggested barriers to effective inclusion of patients in their healthcare and end-of-life decisions.