Patient understanding: How should it be defined and assessed in clinical practice?

In order for patients to make autonomous decisions in a healthcare setting, they must understand relevant information. There is, however, a lack of consensus on how understanding should be defined or assessed in this context, despite the fact that in practice doctors are regularly required to judge whether a patient has understood medical information. Current accounts of patient decision-making often focus on the information which needs to be disclosed to the patient to support their autonomous decision-making. Far less attention has been afforded to questions about how we might determine whether a patient has understood the information disclosed to them. Theoretical approaches to the concept of understanding in this context, and practically useful frameworks for assessing it, are lacking. In this paper, I use a number of hypothetical clinical situations to explore the conditions that are required for a patient to adequately understand information in medical decision-making. Drawing upon the wider philosophical literature, I propose a number of criteria which are necessary for understanding in a medical context: patients must (1) grasp a body of information which (2) reasonably reflects a responsible body of medical professionals' best estimate of the truth, (3) to a degree which meets a context-specific threshold. These criteria may be helpful in guiding assessments of patient understanding in clinical practice.

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.

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.

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.

'Healthcare Heroes': problems with media focus on heroism from healthcare workers during the COVID-19 pandemic.

During the COVID-19 pandemic, the media have repeatedly praised healthcare workers for their 'heroic' work. Although this gratitude is undoubtedly appreciated by many, we must be cautious about overuse of the term 'hero' in such discussions. The challenges currently faced by healthcare workers are substantially greater than those encountered in their normal work, and it is understandable that the language of heroism has been evoked to praise them for their actions. Yet such language can have potentially negative consequences. Here, I examine what heroism is and why it is being applied to the healthcare workers currently, before outlining some of the problems associated with the heroism narrative currently being employed by the media. Healthcare workers have a clear and limited duty to treat during the COVID-19 pandemic, which can be grounded in a broad social contract and is strongly associated with certain reciprocal duties that society has towards healthcare workers. I argue that the heroism narrative can be damaging, as it stifles meaningful discussion about what the limits of this duty to treat are. It fails to acknowledge the importance of reciprocity, and through its implication that all healthcare workers have to be heroic, it can have negative psychological effects on workers themselves. I conclude that rather than invoking the language of heroism to praise healthcare workers, we should examine, as a society, what duties healthcare workers have to work in this pandemic, and how we can support them in fulfilling these.

Should non-disclosures be considered as morally equivalent to lies within the doctor-patient relationship?

In modern practice, doctors who outright lie to their patients are often condemned, yet those who employ non-lying deceptions tend to be judged less critically. Some areas of non-disclosure have recently been challenged: not telling patients about resuscitation decisions; inadequately informing patients about risks of alternative procedures and withholding information about medical errors. Despite this, there remain many areas of clinical practice where non-disclosures of information are accepted, where lies about such information would not be. Using illustrative hypothetical situations, all based on common clinical practice, we explore the extent to which we should consider other deceptive practices in medicine to be morally equivalent to lying. We suggest that there is no significant moral difference between lying to a patient and intentionally withholding relevant information: non-disclosures could be subjected to Bok's 'Test of Publicity' to assess permissibility in the same way that lies are. The moral equivalence of lying and relevant non-disclosure is particularly compelling when the agent's motivations, and the consequences of the actions (from the patient's perspectives), are the same. We conclude that it is arbitrary to claim that there is anything inherently worse about lying to a patient to mislead them than intentionally deceiving them using other methods, such as euphemism or non-disclosure. We should question our intuition that non-lying deceptive practices in clinical practice are more permissible and should thus subject non-disclosures to the same scrutiny we afford to lies.