Inspecting the links: Knowledge, evidence and value in healthcare

Abstract

Since its inception, the Journal of Evaluation in Clinical Practice has been all about providing a forum for serious, critical interdisciplinary debate regarding matters of practical importance in healthcare.¹ Through early editions focussing on issues in health management, quality and audit,^2-4 and the numerous thematic editions focussing on evidence-based healthcare^5-9 we have given authors the opportunity to challenge dominant ideas and to raise pertinent questions that they feel are not being discussed elsewhere.

This forum has proved to be an important resource, with the dialogue generated playing a significant role in advancing our understanding of issues absolutely fundamental to good practice across the globe. The lengthy (and still on-going) critical discussion of evidence-based practice is a fine illustration of this process. As argued in a previous special edition of this journal, the ‘great debate’ about research, practical reasoning, evidence and clinical decision-making has very much ‘moved forward’.¹⁰ The edition brought together contributors previously classed as either ‘critics’ or ‘protagonists’ of evidence-based medicine, demonstrating the shared understandings and common ground that have developed between what were once two ‘camps’, due to open and frank debate over several years. Mutual understanding really can be achieved by open dialogue, when contributors from different starting points are willing to engage, and it is our hope that further progress can be made via future editions, to resolve outstanding differences and clarify remaining areas of uncertainty.

One of the essential features of this process is a willingness to identify and analyse assumptions of an underlying nature. Practitioners, researchers, managers, patients and carers from diverse intellectual and cultural backgrounds will often bring with them different understandings of such key ideas as evidence and value. The question ‘what do we mean by evidence?’ is by no means a trivial or merely ‘academic’ question. Only by asking it, and critically interrogating the answers given in a range of contexts, can we uncover, discuss and evaluate our different understandings and the conceptual frameworks that shape our thinking and practice.

For this reason, in 2010, the journal published its first thematic edition dedicated specifically to exploring health philosophy. The stated goal of the edition was ‘to bring depth and clarity to the discussion of topics too often addressed superficially’ by promoting philosophy as the activity of critical thinking and dialogue, applied to pressing problems confronting health professionals, service users and policymakers.¹¹ Authors from an impressive range of academic and professional disciplines examined assumptions about the nature of scientific and causal reasoning, explaining their role in shaping dominant ideas affecting clinical decision-making and the research–practice relationship.^12-18 Papers examined the connections between epistemic, ethical and broader social and political questions, analysing their implications for our current understanding of clinical reasoning, judgement and the nature of health itself.^19-23

Subsequent instalments of this annual health philosophy thematic have returned to this crucial, underlying and deeply challenging question of the relationship between clinical epistemology, ethics and practice.^24-27 The understanding of science, research and diagnosis as social activities, located in cultural and historical contexts, has led authors to initiate stimulating and timely discussions regarding objectivity, bias, narrative evidence, lived experience and epistemic injustice.^28-31 Related debates concerning professional and patient expertise, phenomenology, personal perspectives and values, and the relationship between judgement, rationality and trust, have helped to shift such ideas as shared decision-making and person-centred care from the peripheries of health discourse, to being broadly regarded as central components of any genuinely integrated, realistic and conceptually sound account of healthcare practice.^32-34

None of these debates are truly ‘concluded’, which perhaps is no surprise given the importance and complexity of the foundational issues they address. The current health philosophy edition (the 15th in the series) consists of articles that invite us to scrutinize our contemporary conceptual frameworks, the distinctions and overlaps between knowledge and value, epistemology and ethics, and the theory-practice relationship.^35-53 It opens with three articles that illustrate most effectively the integrated nature of epistemic and ethical considerations in medical reasoning and practice.

The first article revisits a theme that was the focus of a recent special edition: the role of artificial intelligence in clinical decision-making.⁵⁴ Sune Holm identifies the ‘high hopes’ that decision-making in medicine can be improved by the use of AI devices designed to estimate the probability of a patient suffering a specific condition.³⁵ Noting that such devices rely on purely statistical evidence, Holm illustrates the serious problems with the claim that such evidence can provide us with good reasons for decisions about the allocation of health resources. His argument draws on work in legal epistemology that establishes demonstrably reasonable doubt regarding the epistemic value of such evidence. Ethical concerns about our reasons for judgements regarding the treatment of persons are integral to the account of epistemic value in both the legal and medical contexts, and the argument has implications that go beyond the use of AI, requiring reconsideration of ‘the use of statistical evidence in medical practice more generally’.

Shane Neilson's contribution employs ethical arguments to reframe medical epistemology in a strikingly different way, explaining the ‘contrasting epistemologies’ of Biomedicine, Western Narrative Medicine and Indigenous Story Medicine.³⁶ After outlining the reductionist philosophy underlying traditional Western Biomedicine, the article focuses on the different conceptions of a ‘story’ and its role in the healing process in both Western and Indigenous variants of Narrative Medicine. Neilson argues that the Western variant developed as a ‘reaction’ to the dominant biomedical model, and that Indigenous Narrative Medicine might afford new ways of relating and receiving stories that would enrich medical knowledge. The article effectively makes the case that it is impossible to understand crucial epistemic questions in any meaningfully objective sense, without analysing issues of social, political and ethical context—otherwise one risks dismissing alternative epistemological approaches because they do not coincide with the dominant approaches of colonial culture.

In their analysis of acute stroke decision-making, Michel Shamy and colleagues set out explicitly to examine the intersection of ‘two systems’: ‘scientific evidence’ and ‘ethical evidence’.³⁷ The former incorporates ‘evidentiary standards and epistemic models of clinical care, especially those of evidence-based medicine’, while the latter consists in conceptual systems that can ‘be used to frame, interpret, and analyze the ethical characteristics of clinical cases’. There is no basis ‘for creating an operational distinction between the ethical and the non-ethical aspects of determining how best to care for patients with stroke’. Both systems are essential to understanding clinical practice, and both are well researched: the ‘evidentiary basis’ for the ethical aspects of decision-making is theoretical work in philosophy, economics, history and the social sciences, in particular work explaining and evaluating distinct ethical approaches, ‘including naturalism, virtue ethics, feminist bioethics, and consequentialism’. Only by establishing a ‘deep and rigorous understanding’ of the ethical frameworks that are as intrinsic to clinical judgement as scientific systems, can we enable clinicians to understand their own practice, and to convey that understanding to patients.

Their paper is followed by a good illustration of the attempt to make such underlying frameworks explicit, and to present arguments concerning which aspects of these frameworks should shape our approach to practice in a given area or situation. Marco Azevedo and colleagues propose guidelines for the fair allocation of scarce intensive care units and ventilators in a pandemic.³⁸ Their guidelines incorporate elements of egalitarianism and utilitarianism. Thus, in contrast to Holm's approach, they include an element of probabilistic reasoning in their decision-making system, but they attempt to do so in a way that avoids ageism and ableism, which they recognize are forms of discrimination often associated with such approaches in public debate. The authors provide a detailed explanation and defence of their system, which they had previously discussed publicly during the Covid pandemic. Their goal in doing so was, precisely, to make the decision-making process more transparent, and to create a frank and open dialogue regarding the terrible decisions confronting practitioners throughout the crisis. Such a dialogue is needed not only to enable the public at large to understand the dilemmas facing professionals but also allow a truly informed and inclusive debate about processes that could, in principle, directly affect any of us.

Sandra Monteiro and colleagues describe an extensive and ambitious project to generate open and inclusive discussion that grounds the debate about fundamentals—underlying conceptions of clinical reasoning—in the pressing and urgent challenges facing contemporary societies.³⁹ The project incorporates a ‘ReThink Clinical Reasoning Conference’ but crucially includes numerous pre- and post-conference activities involving diverse groups of participants. Noting that ‘health inequities’ do not stem from ‘the lone physician’ but from systemic issues, participants are tasked with developing ‘innovative strategies’ to enhance ‘clinical reasoning outcomes within complex systems’. The authors argue that ‘the future of clinical reasoning requires an interdisciplinary multicultural decolonized version of medicine’ and present their project as an important stage in what they hope will be an on-going and fruitful journey.

The challenge that practice presents to theory, including the ethical theories discussed in several of the preceding articles in this edition, is neatly illustrated by the first contribution to this edition from the practitioner Richard Armitage.⁴⁰ Dominant ethical theories (most notably principlism but also the liberal utilitarianism advocated by JS Mill) defend conceptions of patient autonomy as incorporating not only the right to be informed of important issues and problems potentially affecting their health but also the right ‘not to know’ about problems and situations they find distressing. The paper focusses specifically on challenges presented to practitioners when it comes to respecting this ‘right’ in the age of digital technology, but then draws out the numerous conflicts it creates regarding clinicians’ duties to patients, family members and the broader community. This is followed by an interesting debate between Armitage and Ben Saunders^{41, 42} regarding nondirected, altruistic kidney donation. The authors consider arguments and analyses concerning donation, insurance, risk and gambling—analysing decisions with reference to broader social, economic and evaluative contexts.

A thoughtful analysis of evidence from practice provides the basis for a challenge to dominant theories regarding diagnostic reasoning. Geoff Norman and colleagues explain the prevalence of dual process models, which identify two distinct components of the reasoning process: ‘an early phase where the clinician advances one or more diagnostic hypotheses, and a later phase where these hypotheses are systematically tested’.⁴³ Due to typically unexamined background assumptions, it seems simply self-evident to most commentators that phase 1—‘fast, unconscious, intuitive’—will be the source of diagnostic errors while phase 2—‘slow, methodical, analytical, and rational’—will be error-resistant. While this diagnosis of the problem for clinical reasoning has become ‘a mantra in medicine’, the authors’ own methodical analysis of the evidence regarding diagnostic error suggests that the dominant theory fails in its own terms. They then offer a ‘reformulated’ theory which implies that: ‘Clinicians, learners, and educators need to recognize that increasing contextualized, experientially-based clinical knowledge holds the key to enhancement of both systems of diagnostic skill.’

Diagnosis in psychiatry is the focus of the paper by Diogo Telles-Correia.⁴⁴ The author presents a detailed explanation and discussion of the ‘operational/diagnostic criteria’ in psychiatry, generalized since DSM-III. A detailed analysis of the epistemological context in which the operational criteria (OC) emerged leads him to concede that they include ‘a component based on the best expert opinion and not just on empirical data’ and, indeed, that this component is ineliminable—as the OC develop further this component will still be there, making the criteria irreducibly normative. However, he contends that this is the case for ‘all data related to human behaviour and the social and human sciences’. He argues that a particular philosophy of science, Neopositivism, has ‘pervasively shaped present-day thinking’ in psychiatry. Once this influence has been identified, ‘it must be analysed so that new alternatives can be proposed’. The paper concludes that ‘different ways of classifying and ordering mental illnesses can and should be developed according to specific objectives’.

A striking alternative to the positivistic framework is described and employed by Edina Toman and colleagues in their analysis of the role of the lived body during the integration of the traumatic experience of the sternotomy scar.⁴⁵ The article presents a detailed case study of a 42-year-old woman who had undergone open heart surgery, using both qualitative interviews and drawings to understand the woman's lived experiences. The method of interpretive phenomenological analysis provides an invaluable insight into her trauma, alienation and the healing process, revealing the dissociation and then the eventual integration of the traumatic experience through the perspective of the lived body. The authors helpfully explain their methodology, including the elimination of bias via researcher reflexivity, enabling the researchers to discover and record her experiences and meanings associated with the disease, the heart operation and the postoperative period. The paper helps us to understand the ‘objective reality of the heart’ as requiring ‘integration’ into the lived body experience to meaningfully inform practice. This is a shift in focus that is fundamental—a classic example of a philosophical ‘reframing’ of an issue and a fine illustration of how such a reframing enhances our understanding of a real case.

The reframing proposed by Ognjen Arandjelovic concerns our concept of disease⁴⁶ discussed in the context of an approach that has been the preoccupation of numerous contributions to the philosophy thematic editions of this journal: patient-centred care.^{26, 27, 30, 32, 33} Despite its centrality to biomedical discourse, Arandjelovic argues that there is no consensus on its ontological status—‘what disease actually is’. Reviewing arguments about a range of conditions including obesity, deafness and numerous actual or alleged ‘mental health disorders’, the author argues that the concept is not only irreducibly value-laden, but that its utility in future healthcare discourse is highly questionable. Claiming that ‘the notion of disease is at best superfluous, and likely even harmful in the provision of compassionate and patient-centred care’, he advocates a radical revision of health discourse. The paper outlines an approach grounded in sentience—the subjective experience of conscious beings—treating this concept as foundational to how we understand health and illness, making the ethical nature of our understanding fundamental. By spelling out the implications of this approach for diagnosis, the author gives an effective illustration of the sense in which the approach qualifies as genuinely ‘patient-centred’.

The paper by Benjamin Smart and Herkulaas Combrink⁴⁷ provides an impeccable illustration of the role of applied philosophy in health discourse. Discussing a topic of demonstrable and urgent practical significance, they explain in detail the underlying philosophical issues concerning the relationship between ontology and ethics—our views about the nature of reality, what there is, and our views about value and the status of ‘normative’ judgements. The paper offers an account of the ontology of epidemics, noting the serious limitations of approaches that attempt to provide an account that is ‘naturalistic’ in a sense meaning ‘value-free’. They then consider the opposing view defended by ‘normativists and social constructivists’, which embraces the value-laden nature of our conceptions of ‘epidemic’ and ‘disease’ and, as an apparent logical consequence, treats the status of such conditions as inherently ‘subjective’ or ‘relative’—their usage reflecting personal preferences or social norms.

What both views have in common is the underlying assumption that value judgements cannot be correct or incorrect. The severe limitations of each account of the ontology of epidemics require us to question this underlying assumption. The authors provide their own, alternative ‘value-dependent realist account’ of epidemic status. The account draws on ideas derived from complexity theory, and the view that human populations can be regarded as complex systems. Epidemic status can then be categorized as an emergent property of a complex system.⁴⁷ The paper explains with admirable clarity the advance such an approach presents to our understanding of epidemics, including their beginnings (when a disease becomes an epidemic) and their endings—when ‘the burden of disease drops below an objective but distinctly normative epidemic threshold’.

The three papers to follow focus on communication and an issue that was the theme of the previous philosophy thematic edition: sense-making.³⁴ Contributors to that edition argued for the need to understand patients’ personal philosophies to deliver adequate care, treating the idea of ‘sense-making’ as a key component of our broad understanding of health. Authors such as Luis de Miranda presented a model of health as having three key aspects: a physical aspect— bodily functioning; a psychological aspect—our sense of wellbeing; and a philosophical aspect—how we ‘make sense’ of our experiences in our broad understanding of our lives.³⁴

In this edition, the insightful commentary by Paul Garner and Henrik Vogt examines the relationships between these aspects, arguing that ‘the personal philosophy of patients, the way they conceptualize and act towards their illness, not only affects quality of life; it may affect the health problem itself.’⁴⁸ Looking specifically at ‘long covid’, they note that medical information about this condition has an ‘iatrogenic potential,’ meaning that ‘health professionals can inadvertently amplify and prolong symptoms by the information they convey to patients’. A better understanding of public health requires us to look carefully at the relationships between science, social context, communication and sense making, to understand that ‘the way individuals make sense of their bodies… can create, modulate, shorten and prolong symptoms and influence bodily physiological reactions’.

Thea Beate Brevik and Knut Willy Sæther approach the issues of communication and sense-making from a different direction, considering the tensions between certain religious and cultural beliefs and values on the one hand, and public co-operation with health initiatives on the other.⁴⁹ Citing studies identifying religious fatalism as a barrier to cancer screening attendance, the authors note that several of these studies suggest interventions to decrease fatalism, as a means of improving public health. Brevik and Sæther accept that religious fatalism presents a problem for health education, but they are keen to explore options to overcome this problem that ‘work with cultural and religious values’ rather than directly challenging them. Outlining a pedagogic strategy in which religious fatalism is ‘both taken seriously and constructively approached’, they argue that it is not necessary to decrease religious fatalism to increase screening. Their alternative educational strategy requires health educators to engage with the belief systems of the populations with whom they hope to communicate. There is a need to understand the complexity of religious fatalism and how to combine its way of making sense of the world with clinical understanding.

In another insightful and challenging analysis, Richard Hassall examines sense-making in the particularly problematic area of psychiatric diagnosis.⁵⁰ Appealing to narrative theory, Hassall explains the importance to our sense of identity of having a narrative that connects and gives meaning to our experiences over time. He argues that our ‘self-narratives represent to us who we have become and how we make sense of our lives’. They are particularly important when we are dealing with challenges and problems in life, including serious illness. However, in the case of psychiatric diagnosis, Hassall argues that a biomedical narrative ‘can conflict with the recipient's previous self-narratives’, reducing the recipient's sense of self-efficacy, resulting in feelings of hopelessness about recovery. Using Fricker's work on epistemic injustice,⁵⁵ Hassall argues that such patients are vulnerable to hermeneutical injustice: there is a danger that the diagnosis can deprive them of the ability to understand or articulate their experiences in ways that make sense to them.

He concludes that this makes it particularly important to emphasize that the ‘diagnosis’ is not the ‘explanation’ of the condition.⁵⁰ Reading his paper in light of the one by Telles-Correia,⁴⁴ it is to be hoped that the more open discussion of the values involved in psychiatric diagnosis advocated there might present more possibilities for meaningful communication with patients in future.

In a return to the issue that (as noted above) generated some of the earliest debates in this journal, Henrik Berg gives a discerning critical analysis of evidence-based practice.⁵¹ Criticizing the lack of an explicit epistemology in much of the discourse on evidence-based practice, the author presents a detailed exposition of the underlying assumptions the discourse on this topic reveals to make transparent its implicit epistemology. Tracing the assumptions of authors about knowledge to their foundations in the history of ideas, Berg identifies the empiricist philosophy of thinkers such as David Hume as determining its conceptions of causality. However, it is also strongly influenced by the mathematization of nature found in the work of rationalists such as Descartes and a form of Progressivism associated with thinkers including Bacon and Mill. Berg illustrates how these underlying assumptions are not only in tension with each other but (contrary to a common understanding of being progressive) may also lead to epistemic injustice.

In search of more positive applications of EBM epistemology and the associated GRADE system (Grading of Recommendations Assessment, Development and Evaluation), Tudor Baetu and Marco Azevedo discuss how GRADE can be used to resolve differences between practitioners.⁵² The paper describes some particularly serious disagreements that arose during the Covid-19 pandemic, leading to accusations of medical malpractice. Providing another excellent illustration of the interplay between ethical and epistemic considerations in the context of pressing practical problems, the authors perform an intriguing exercise in conceptual mapping. By examining how the recommendation categories in the GRADE framework map onto deontological classifications in medical ethics, they argue we can gain a better understanding of the decisions made in controversial cases. They hope this greater understanding may ‘help promote a more tolerant and less polarized attitude in situations of medical crisis’ in future.

The edition concludes with Pat McConville's review of The Healing Body: Creative Responses to Illness, Aging, and Affliction by Drew Leder.⁵³ McConville helpfully locates this work in the context of Leder's broader project, an extensive phenomenological investigation into embodiment. By outlining the preceding works in the trilogy, McConville conveys a good sense of the overall picture, which bears some interesting points of comparison with the process discussed in the piece by Toman and colleagues in this edition.⁴⁵ Despite his extremely positive review of the work, McConville is sceptical of the book's attempt to combine two different philosophical traditions in the context of health practice.

The debate, it seems, must go on.