1. Introduction: Understanding clinical medicine
Diagnosing is a central feature of clinical medical practice. This article explores the aims and characteristics of clinical medicine by asking what is lost when diagnosis is absent and, in turn, what this tells us about clinical medical understanding. We start from a puzzle: If effective treatment has been identified and made available without a diagnosis, why would patients still ask for one? If clinical medicine aims at cure, and this is attainable without a diagnosis, it seems that nothing should be lost in its absence. Yet patient requests for a diagnosis and their disappointment in the absence of one indicate that there is more to be said.
When patients express disappointment with the lack of a diagnosis, even if already in effective treatment, it reflects a failure to meet the expectations we hold for a successful clinical encounter and, I suggest, thus reveals something significant about what medicine is (meant to be). I will argue that the dissapointment arises from an unfulfilled epistemic expectation of understanding (sec. 3) and bodily intelligibility (sec. 4). Symptoms can leave patients with a sense that their body is alien and unrecognizable and, by extension, that they no longer inhabit the world in a proper sense. Addressing this experience is a central task of clinical medicine. I will argue that beyond explanatory, mechanistic understanding—helping us to predict or intervene on patient ailments—successful clinical medicine also requires regained bodily understanding and reintegration. I end by noting that diagnosis can be an important and efficient tool for making patient bodies (re-)appear as intelligible, although it is neither necessary nor sufficient in this endeavor.
The article progresses by way of synthesis. It starts from an empirical qualitative case prompt and then integrates insights from analytic philosophy of medicine and phenomenology of illness. This approach reorients discussions of medical understanding away from theories of disease and toward patient bodies by emphasizing the importance of symptoms as both biological and existential. By doing so, I do not suggest that existing literature on understanding in medicine is faulty but rather that it does not capture the full scope and potential of clinical medical practice because it is too narrowly focused.
2. “But … what’s wrong with me?”—a case prompt
In January 2022, I was working as an assistant on a research project developing a clinically assisted internet-based self-help program for patients with persistent physical symptomsFootnote 1 in general practice (the project was called eASY—eHealth and Assisted programme for persistent Symptoms Footnote 2 ). The program provides patients with a range of behavioral management tools directed at sleep, stress, exercise, and diet, as well as informational videos about systemic, medical theories of body-stress-symptom response. It was designed to provide better support for individual patients in a modern health-care system, where face-to-face time is costly. Access to the program is provided through a general practitioner (GP) after they have evaluated the patient. The patient then has 6 weeks of engagement before the patient and the GP meet for a face-to-face follow-up session.Footnote 3 I was involved during the development of the prototype program, and my task was to conduct interviews with patients and GPs about the practical functionality of the interface—evaluating technical features and usability to improve day-to-day integration between the program, patients, and clinicians. However, an interview with a GP that was meant to be about practical issues and technical tweaks turned into a conversation on philosophical issues of disease management, diagnosis, patient frustration, and doctor time. This conversation, and the case that triggered it, became the starting point for the article.Footnote 4
The patient that the GP had prescribed the program for was a young woman—let us call her Emily—suffering, over many years, from severe exhaustion, fatigue, headaches, and body aches. Prior to being enrolled in the prototype study, Emily had gone through several diagnostic attempts, but with no clear answers. After the 6-week engagement with the program, the GP had a follow-up consultation with Emily, during which—the GP told me—Emily reported a reduction in symptoms and a better balance between illness and lifestyle. Both doctor and patient were happy and satisfied with the process. However, said the GP, when the 20-minute consultation was almost up, Emily said, “But … what’s wrong with me?” This was followed by an additional 20 minutes of a now more complicated conversation—while time was taken from other patients—about a variety of diagnoses and explanations of illness and illness identities.Footnote 5 The conversation revolved around diagnostic labels such as fibromyalgia, bodily distress syndrome (BDS), moderate functional disorder, chronic pain condition, and other related symptom diagnoses, but the GP would not identify one of these as “the diagnosis.” The GP explained—to me, as she had to Emily—that it would not make a difference to the approach and process of treatment and that committing to one or the other of these terms would come with various controversies and uncertain frameworks. After this extended explanation of various available diagnoses, how they fit and diverged from Emily’s case, and the reasoning for the lack of diagnostic outcome, Emily seemed satisfied; the GP, however, was frustrated by the time-consuming character of this exercise.
When I retell this story to practicing clinicians, nodding usually spreads in the room—the patient request for a diagnosis is well known. So much so that a chapter in Jutel’s sociology of diagnosis is indeed called “What’s Wrong with Me?” (Jutel Reference Jutel2011). In Jutel’s account, what is at stake in this request from the patient to the doctor is the question of legitimacy: A diagnosis turns the (patient) illness experience into a legitimate (scientific) medical disease (Jutel Reference Jutel2011, 63). Jutel also highlights how the explicit request for a diagnosis can be a political act, resisting medical authority, especially in cases of medically unexplained symptoms (Jutel Reference Jutel2011, 94). Other accounts add that requests for diagnostic categories may arise from medically “external” roles that diagnoses play, such as excusing one from responsibilities, triggering access to benefits, and so forth (e.g., Maung Reference Maung, Tekin and Bluhm2019)—for example, needing a diagnosis to receive sick-day compensation. Recognizing that all of these factors may be important forces in the dynamics of clinical diagnosis, they do not seem to be the motivation in Emily’s case: The GP already recognizes Emily’s symptoms as severe and worthy of medical attention and treatment, Emily expresses no disagreement with the GP’s judgment, and relevant structures of exemptions and benefits are already in place. Rather, what Emily expresses is an epistemic request—a request for medical insight.
3. Understanding and curing disease
What is troubling in Emily’s case is that while we seem to have enough of a grasp on her ailments to bring about improvement, there is no available disease category. And so, on the one hand it seems that the 40-minute conversation was a waste of clinical resources. On the other hand, the latter 20 minutes, even if a source of clinical frustration, seem to have provided something of importance, addressing, at least to some degree, her question. A better sense of what difference these 20 minutes made may help reduce the time span or, if not, at least provide a sense that it is time well spent. To get this sense, we need a better grasp of the purpose of Emily’s question. This is what I will try to offer.
3.1 Diagnosis as a step toward cure?
The usual story about diagnosis goes that we need to identify and understand the problem in order to fix it, hence the view that diagnosis is a step toward cure: an assertion that forms the basis for an informed clinical decision about interventions and treatment options. If we fail to obtain a diagnosis, this is an issue because it will make the following steps—solving the problem—less clear or even potentially misguided. This does not mean that diagnosis is a simple or even a static matter; there can be an iterative relation between treatment attempts and diagnosis. However, it does mean that if we could (reliably) decide on the appropriate intervention without a diagnosis, diagnosing would become superfluous. In this conception, diagnosis is “subservient to the overarching [medical] goal of cure” (Broadbent Reference Broadbent2019b, 43). Broadbent argues that this view is broadly assumed in the philosophy of medicine, and he calls it the curative thesis (Broadbent Reference Broadbent2019b, 40). As indicated earlier, we may, of course, have “external” reasons to care about the diagnosis even if we could cure without it, but if we take Emily’s request as “internal” to medicine, the case provides a challenge to the curative thesis, and in fact, it prompts support for Broadbent’s alternative inquiry thesis. That is, Emily’s case indicates that even when a cure is available, understanding, in the form of naming, may still be expected. Emily is not exactly cured, of course, but there are signs of effective intervention and improvement without the diagnosis, and thus an account that sees medical practice as only oriented toward cure—or “reasonably effective intervention,” as Broadbent (Reference Broadbent2019b, 39) puts it—will struggle to make sense of her request.
As indicated, the curative thesis can be upheld if Emily’s request is seen as a request for extra-medical purposes, motivated by the question of legitimacy or resource allocation. This is often how cases like Emily’s are discussed (as we saw with Jutel). Such “external” roles are, of course, by no means less valid or valuable; it is a crucial, burdensome, and highly complex activity to navigate the power dynamics of medical structures and societal resource distribution. And debates about their significance in medical practice are important. While important, however, we cannot expect medical professionals to be particularly skilled on “external” matters.Footnote 6 Conversely, it is exactly in the area of “internal” roles of diagnosis that patients can reasonably expect the clinician to be an expert. Emily’s frustration and expectation to have her question answered indicate that her request operates within the medical sphere: She is asking for medical expertise rather than challenging it.
Broadbent’s inquiry thesis says that while the ultimate goal of medicine may be cure, the “business” of medicine—what it does—is “understanding and predicting” (Broadbent Reference Broadbent2019b, 62). Broadbent then has a story about how these relate, but for the purposes of this article, I focus on understanding. The claim is motivated by the observation that a successful clinical encounter does not require cure, but it does require demonstrable understanding, or as Broadbent writes: “Patients hope for a cure, but they expect a diagnosis; and a doctor who cannot cure them will not necessarily be regarded as incompetent, if she can explain to the patient why cure is impossible” (Broadbent Reference Broadbent2019a, 106).Footnote 7
So, we might take it that Emily is asking the doctor to demonstrate understanding, but how would a diagnosis do the trick? And how might a 20-minute conversation also, to some degree, satisfy her expectation? While the inquiry thesis gets us some way in making sense of Emily’s case, we still need to specify what kind of understanding we expect in a clinical encounter and what role diagnosis plays in this.
3.2 Understanding disease?
In his recent article “Understanding in Medicine,” Varga (Reference Varga2023) argues that clinical medicine requires two kinds of understanding that are combined into “clinical understanding”—namely, biomedical understanding and personal understanding. One secures the clinician’s understanding of disease; the other is the clinician’s ability to apply this appropriately to individual patients. In this subsection, I focus on his account of understanding disease.
Biomedical understanding, Varga argues, is an objectual understanding of disease(s). By this, he means to say that biomedicine aims at grasping medical conditions “in a reasonable level of detail” such that we understand not just why symptoms occur but also “why intervening on one variable makes a difference to the value of the other” (Varga Reference Varga2023, 3038). The goal of medical inquiry is thus more demanding than a single-event causal explanation; it requires that we understand the phenomenon (the disease) in a systematic and integrated way (Varga Reference Varga2023, 3029), providing a coherence-making theory that makes “symptoms now stand out as a coherent whole” (Varga Reference Varga2023, 3036). Varga includes elements that are not strictly explanatory—such as classification and diagnosisFootnote 8 —in this kind of understanding (Varga Reference Varga2023, 3030); however, the central player for Varga remains a form of holistic mechanistic explanation (Varga Reference Varga2023, 3038). In other words, the target of biomedical understanding is the disease, and the understanding of this disease is constituted by a grasp of the mechanism that explains the phenomenon as a whole. In this context, the diagnostic moment is part of objectual understanding—although not explanatory—insofar as it enables us to identify the whole, that is, the disease or the phenomenon and its relevant factors.Footnote 9
While it is not clear what Broadbent’s position on understanding is,Footnote 10 Varga’s characterization of biomedical understanding works well for at least some of Broadbent’s claims. Broadbent characterizes medicine under the inquiry thesis as “an inquiry into the nature and causes of health and disease, for the purpose of cure and prevention” (Broadbent Reference Broadbent2019b, 64)—highlighting disease as the target of understanding. Like Varga, Broadbent emphasizes explanation, sometimes literally using the term explanation as interchangeable with understanding (see, e.g., the passage in Broadbent [Reference Broadbent2019b, 64] where “understanding” has been swapped with “explanation” in the “explanations and predictions” pair) (Broadbent Reference Broadbent2019b, 65).Footnote 11
While the biomedical-mechanistic inquiry characterization of medicine may be accurate for medicine as a broader discipline or as a large-scale scientific enterprise that works from bench to bedside toward abstracted knowledge production, it seems less plausible that this is the right way to characterize inquiry in clinical medicine. Clinicians usually do not send patients for an X-ray in order to learn something about bone fractures as a phenomenon or ask patients about their family history to learn about the mechanisms of hereditary breast cancer. They inquire in order to gain an understanding of the individual patient’s body and to advise on the appropriate means of intervention or predict likely outcomes for that patient. The target of understanding in clinical medicine thus is not disease entities but patient bodies.Footnote 12 And while theoretical understanding of generalizable disease entities is undeniably a very useful resource in this endeavor, it is not the full story.
3.3 (Not) targeting the patient
Both Broadbent and Varga recognize, of course, that it takes more than biomedical understanding to be a skilled clinician. Broadbent notes that successful medical practice requires (1) “having (or having access to) a substantial body of medical knowledge” and (2) “being able to apply it to the particular patient in question, to work out where in that large body of knowledge the particular case fits” (Broadbent Reference Broadbent2019b, 69). And Varga emphasizes that clinical understanding requires a combination of biomedical and personal understanding.
In Broadbent’s account, the translation into the clinic seems subsumed under genuine medical understanding: Understanding a disease includes being able to recognize it in patients and understanding what things to look for in patients to place them in different locations of the medical landscape. This is a rather standard view of patients as instancing the particulars of a general disease, which tells us why diagnosis may, in Broadbent’s eyes, both require and demonstrate understanding. It aligns with Varga’s point that objectual understanding also involves classificatory understanding, that is, the ability to identify the phenomenon in concrete instances.
For Varga, on the other hand, personal understanding is something quite different from biomedical understanding. He highlights that without personal understanding, clinical practitioners will not be able to grasp (a) the illness descriptions provided by the patient, (b) the values and wishes expressed and necessary for respecting patient autonomy, and (c) the kinds of solutions that would help the patient in their particular life circumstances (Varga Reference Varga2023, 3041). He is undecided as to whether personal understanding is a form of skill or practical understanding that the clinician should have—an ability to empathize and engage socially—or a special kind of second-person explanatory understanding that is gained in the course of the clinical encounter, but with a focus on (psychological) reasons rather than causes (Varga Reference Varga2023, 3042).Footnote 13 Whether it is one or the other, the important point is that clinicians must employ an interpersonal understanding to get at the illness (i.e., the personal experience of the disease), and only then can they act in accordance with medical ethics, respecting patient wishes and enabling patient autonomy, and more pertinently for this article: Only then can they draw appropriately on their objectual, mechanistic understanding of disease (Varga Reference Varga2023, 3041).
While there is more to be said on the role of empathy in clinical medicine—and much has already been said (see, e.g., Svenaeus Reference Svenaeus2014; Whitehead and Woods Reference Whitehead, Woods, Whitehead and Woods2016; Betzler Reference Betzler2018; Guidi and Traversa Reference Guidi and Traversa2021)—its role for Varga is primarily one of ensuring that biomedical understanding can be “adequately contextualized and supplemented” (Varga Reference Varga2023, 3038). Varga is careful to state that personal understanding is indeed a necessary component of clinical understanding, but in an instrumental way. Reading Varga’s account, one is left with the impression that personal understanding is an activity quite like that of experimental calibrations in the sciences—essential as a means of getting at and manipulating the target phenomenon in a responsible way, but not in itself of epistemic interest. In other words, personal understanding is not the core competence of medicine—its “business,” as it were. While clinicians must indeed be able to understand their patients, the target of clinical medicine for Varga remains the disease.
This view addresses the previous observation that clinicians do not send patients for X-rays to learn about bone fractures because it frames the clinical medical encounter as a domain of application. Understanding is a matter of identifying the disease, of diagnosing. My grievance here is that this necessitates a generalizable object—a disease—in order for medicine to do what it does. This leaves Emily and other patients like her out of reach for clinical medical understanding because we do not yet have a holistic grasp of the mechanisms of her condition, perhaps because her condition is not one that lends itself to mechanistic explanation (Eriksen et al. Reference Eriksen, Kerry, Mumford, Lie and Lill Anjum2013). I want to argue for a conception of clinical medicine and clinical understanding that helps us see how and why the GP can address the epistemic request that Emily posed, even if not with a diagnosis.
To sum up: Understanding is central to medicine, with doctors having, demonstrating, and gaining it. Philosophers of medicine characterize the target of this understanding as “disease(s)” and argue that the understanding works through grasping holistic mechanisms—or sometimes, merely through causal explanation (Maung Reference Maung2016). In the context of the clinic, Broadbent and Varga emphasize the ability to identify diseases in particular patients and the ethical and communicative ability to understand patient values, perspectives, and explanations. While this seems mostly uncontroversial, such a characterization of clinical medicine leaves a large group of patients outside of the scope of clinical understanding. In the following, I reframe the view on clinical understanding to encompass the existing accounts while providing a wider scope of possible successful clinical encounters.
4. Understanding symptoms
Instead of the distinction Varga suggests between understanding the disease and understanding the person or illness, I think it is useful to see the clinical medical encounter as an inquiry into symptoms—that is, bodily or mental phenomena that appear as signs or traces of pathology in the specific patient bodies. I use symptom here in a commonsense meaning, arising from the 19th-century tradition (Aronowitz Reference Aronowitz2001, 803) meaning that for this article, I do not distinguish between symptoms and signs. Other scholars have captured a similar notion as something that “warns against possible disease” (Eriksen and Risør Reference Eriksen and Bech Risør2014, 89), an “indicator of bodily malfeasance” (Staiano-Ross Reference Staiano-Ross2012, 34), or as a prompt for meaning attribution (Malterud et al. Reference Malterud, Guassora, Graungaard and Reventlow2015). This latter emphasis on meaning attribution will be important later; for now, the main gist of the term is that symptoms are seen broadly as expressions—subjectively experienced or observed by others—of some form of pathology.Footnote 14
While biomedical and personal understanding may be powerful resources that help us understand symptoms—the same way that acquaintance with established theory and calibrations are in the experimental sciences—neither disease nor personal values are the target for the clinician. Taking clinical medicine as an endeavor to understand symptoms means the separation between biomedicine and patient perspective becomes less clear. This helps us break with the stereotypical bifurcation of disease and illness, and of medicine proper as biomedical knowledge and the rest as add-ons—“art” or humanities. It also opens up a range of resources as legitimate tools of clinical understanding in cases where we do not know the underlying mechanisms or cannot point to identifiable disease labels, thus providing a framework for us to better see how medicine may be a successful epistemic activity across a wider range of cases.
4.1 Symptoms as signs of underlying causes
The standard biomedical way to understand symptoms is to see them as signs of underlying disease—or at least of some underlying cause. This conception follows the same sentiment as Varga’s biomedical view outlined earlier, where understanding symptoms reduces to a question of coherently grasping causes or mechanisms, with the one difference that these mechanisms provide a coherent explanation of the patient’s symptoms rather than a generalizable disease. From this perspective, we might take it that when Emily asks for a diagnosis, she is asking for her symptoms to be causally explained, assuming that a diagnosis would do the job. Maung argues a position along these lines.Footnote 15 In particular, he posits that diagnoses are explanatory because they provide a coherent causal explanation of “the patient data” (Maung Reference Maung, Tekin and Bluhm2019, 509).
As already stated, however, we do not have such an explanation available for Emily and patients like her, neither in the strong sense that Varga may insist on, in terms of understanding the constitutive mechanisms of her condition as a whole, nor even in a thinner sense of understanding the initiating cause or single causal relations. Perhaps, then, this is just a case where medicine cures but does not provide understanding. However, Maung argues that all is not lost, even if we cannot get the causal explanation. One kind of understandingFootnote 16 we might gain, he says, is negative casual explanation: We can exclude certain causes (Maung Reference Maung2016, 19). This might be what Broadbent has in mind when he states that the ability to explain why we cannot explain also counts as understanding. Another kind of understanding we might gain, is probabilistic/disjunctive explanation: having some grasp on the notion that patients with x symptom have some asserted probability of y, even if we cannot explain the relation (Maung Reference Maung2016, 22). And finally, we can come to understand relations between symptoms, even if we do not know their underlying cause (Maung Reference Maung2016, 22), for example, that low mood may be a downstream result of fatigue, or the other way around—the direction of this relation can be tricky if we do not know the mechanism. That is to say, even if we cannot presently understand mechanisms, we can understand something biomedical about symptoms in the patient. Note that if the target of understanding was disease, none of Maung’s suggestions would hold as contributions towards medical understanding.
Here, I will need to add some further detail to the case prompt. Part of the intervention that Emily went through with the online program in fact provides the kind of statistical-disjunctive understanding of patients with persistent physical symptoms that Maung discusses. In addition, Emily already had a lot of prior negative causal understanding from her many diagnostic tests. And so, while Maung’s observations are pertinent and useful in making sense of how clinical medicine can successfully provide understanding even if we do not know the mechanisms of a lot of the ailments, it does not get us to what Emily is asking about.
It might be worth stating again that I agree that both causal and mechanistic understanding of symptoms are central to medicine and that when we lack positive accounts, we may gain something from the attempt to decipher the patient data in terms of their lack of match with known diseases, the statistical correlations we might expect, or the plausible surface-level relations. But while the accounts I have highlighted so far do get a lot of things right, I think they narrow in too quickly on causal explanationsFootnote 17 and thus miss out on broader existential aspects of medicine that are not merely of an ethical, communicative, or “external” kind. Let me clarify in the next section.
4.2 Symptoms as bodily insults
In a parallel literature that has developed in the phenomenological tradition, philosophers have explored other dimensions of illness, disease, and the nature of symptoms. Here, there is deliberate opposition to the idea that symptoms from the body are merely bounded dysfunctions (e.g., Aho Reference Aho2018). I highlight Havi Carel and S. Kay Toombs, both of whom live with serious disorders (lymphangioleiomyomatosis [LAM] and multiple sclerosis, respectively).
In their work, Carel and Toombs both describe the initial phases of their illness—the phase before they sought medical attention—as an experience of their body suddenly calling attention to itself, where previously it had been “transparent.” For example, Carel describes how one day hiking up a mountain she was suddenly overcome by a severe shortness of breath and fatigue that she had not previously experienced on similar hikes: “The first time I realized I couldn’t do something, I felt surprised. It came as an insult, an affirmation of my limited existence” (Carel Reference Carel2008, 1). As time went by, she experienced more and more of these “insults”—which in medical terms might be called symptoms—from her body.
To unfold these experiences, Carel draws on Heidegger’s analysis of tools. When tools break, they change character from being ready-to-hand, that is, ready for use and in themselves not something we notice, to being present-at-hand, that is, the object of our gaze and focus. Heidegger’s own example of an object of use is the hammer (Heidegger Reference Heidegger2007, paras. 15, 33). As long as the hammer works, we are absorbed in the world, in building—focusing on the nails rather than the hammer itself. If the hammer breaks, however, it becomes the focus of our attention as a useless object that now seems difficult for us to do anything with. Similarly, Carel writes: “The [sick] body turns from being a ready-to-hand entity, poised to act and immersed in a world, to a present-at-hand that has lost its capacity for intentional action and is suspended from the world” (Carel Reference Carel2016, 99; see also Carel Reference Carel2008; Toombs Reference Toombs1993).Footnote 18 This may seem consistent with a mechanistic view of medicine as dealing with physically “broken” bodies. However, Heidegger’s analysis differs from a classical mechanical understanding of the world in highlighting how the present-at-hand does not merely imply some physical breakdown and halt of current activities but also invokes existential change. The breakdown radically changes the object for the experiencer—not only its physical form but also its meaning, in the sense that it loses it: The hammer that cannot hammer no longer is a hammer. And the physical leftovers of it take on an alien appearance. In the context of the body, Toombs writes: “What is peculiar about bodily objectification in illness is that the apprehension of body-as-object is such that it renders the experience of ‘uncanniness’ explicit, often resulting in a profound sense of alienation from the body” (Toombs Reference Toombs1993, 75).
To this, both Carel and Toombs add the Merleau-Pontian point that human beings are embodied beings: We are first and foremost bodies, and our thinking and understanding of the world take shape through our bodily interaction with it (Merleau-Ponty Reference Merleau-Ponty2012). Bringing these points together, Carel writes: “Whereas my malfunctioning car [or hammer] can be sold and a new one bought, my body is me. This is an essential feature of our embodied existence that is brought out by illness” (Carel Reference Carel2008, 27). While there is similarity between the defective tool and the dysfunctional body, there is also an essential difference: The body is hers, and she is it. A symptom—the body’s insult—then, is not just an expression of some underlying pathology that interrupts a specific activity. The breathlessness on the mountain does not just slow down Carel’s walk; she is “put before” both the mountain and her body as incomprehensible or meaningless objects. She is alienated, and her focus shifts from an engagement with the world to a distrustful monitoring of her own body. As Toombs puts it: “As a malfunctioning physical entity the body is not only disclosed as hidden and alien presence in an overt and persistent manner but, additionally, in a manner which is necessarily perceived as threatening to the self” (Toombs Reference Toombs1993, 100).
4.3 Understanding bodily symptoms: Regaining the world through bodily reintegration
If we take Carel and Toombs’s descriptions seriously, the “insults” that first appear as surprises and then perhaps become permanent features of patients’ lives are not just practical challenges (e.g., not being able to walk up the mountain) or limited discomforts. They constitute a breach of trust and alienation from oneself, one’s body, and the world. This is not the case, of course, for every minor “dysfunction.” Our lives as bodies are filled with small inconveniences that we accept as a kind of standard deviation. A single day when the knee creaks or the head is heavy might not trigger existential rupture. Some scholars draw a distinction here between bodily sensations and symptoms in order to analyze more closely when and why some sensations take on a symptom character (e.g., Eriksen and Risør Reference Eriksen and Bech Risør2014; Staiano-Ross Reference Staiano-Ross2012). Toombs writes: “If the immediate experience of bodily disruption is sufficiently unusual, prolonged, uncomfortable, and so forth, then it must be explicitly attended to by the patient and reflected upon. Consequently, at this point the experience becomes one that must be given meaning” (Toombs Reference Toombs1993, 33). For the purpose of this article, the dynamics of this change are not important. Patients who seek out medical help in the clinic typically come because the sensations are of a severe or prolonged nature and have already taken on a symptom character, constituting the kind of obstacle Carel and Toombs discuss. Note that the quote from Toombs does not frame the symptom as a call for cure but as a call for meaning—for understanding. When symptoms, or insults, are persistent or of a particularly severe nature, they not only invoke short-term loss of meaning that can be written off (“I wonder why my head hurts—oh, never mind; it’s gone now”) but also necessitate conscious and purposeful attempts at making sense: What is happening to me, and what can I expect for the future? Will it happen again? Will my body continue to fail? It is usually at this point—that is, when bodily sensations become prompts for meaning attribution—that people seek medical attention, and they expect the clinical encounter to address this.
As noted, two things are lost with such symptom insults: The most obvious one is the practical ability to engage in the activity—hammering or building when the hammer breaks, inhabiting the world when the body does. But the second one, which brings about Carel’s anxious bodily monitoring and Toombs’s desire for meaning, is the ability to see the now alienated object as meaningful, that is, as open to being understood. We might call them the practical and the existential bodily loss, respectively. Medicine can help with the first, insofar as it can repair the damages—cure—as well as provide means and guidance for how to live with the condition and advise on what to expect from its progression. That is, exactly as Broadbent highlights, even without cure, understanding is important to the business of the clinic because it allows the clinician—along with a host of other medical professionals (physio- and occupational therapists, dietitians, nurses, etc.)—to support the patient in regaining their practical ability to inhabit the world. That is, returning to the example of the hammer, even if we cannot fix the hammer, we may be able to advise on how to go about building with a broken hammer or how to adjust the building project to one that is doable without a hammer. However, this first practical ability cannot be regained without the latter existential loss being addressed.
Carel and Toombs both suffer from identifiable diseases, which will, however, not go away, and so when they receive their diagnoses and their bodily symptoms can take shape as meaningful patterns, they focus on symptom management and readjustment. In Emily’s case, there is a promise of efficient intervention. However, while this intervention may address the “dysfunctions,” it does not address the loss of ability to see her body as understandable. The persistence of her symptoms comes with a worldly alienation and a rupture of her embodied integration with the world; merely removing the insults ignores the existential impact and the breach of bodily trust that has already taken place. The question “But … what is wrong with me?” can thus be heard as grounded in a need to make sense of what Emily’s body—and by implication, she—has gone through in order to reestablish a body that is meaningful and “poised to act and immersed in a world,” as Carel puts it.
If we accept the phenomenological account of symptoms as bodily insults, a central task of clinical medicine, in its aim to understand symptoms, is also to see their existential aspect. That is, a successful clinical encounter involves aiding the patient in practically mitigating symptoms but also conveying the symptoms, or insults, as intelligible events. In other words, the task is also to reestablish what we might call a “feeling of intelligibility” or a sense of understanding that counters the existential body alienation of the patient. Admittedly, the epistemic value of something like a “sense of understanding” is controversial in the philosophical literature (Trout Reference Trout2002). The controversy lies in the question of whether a sense of understanding is a reliable way to tell that actual understanding has occurred (see also de Regt et al. Reference Regt, Leonelli, Eigner, Regt, Leonelli and Eigner2009, 8), the worry being that we sometimes feel we understand something only to discover minutes later that we did not, and so it appears that the (mere) sense of understanding is not a reliable indicator of correctness. However, in the context of Emily, Carel, and Toombs, as well as other patients, the function of the feeling that their bodies are intelligible is not to confer or indicate correctness on the particular understanding demonstrated by the clinician. Rather, it is to address the sense of alienation—the anxious monitoring and the loss of meaning—that is, to convey a sense that there is a possibility of understanding at all, that the body is not an alien threat but a resource in regaining the world.Footnote 19
In order to help the patient relearn how to skillfully reinhabit their surroundings, clinicians need to reframe the patient’s body as intelligible by demonstrating that the symptoms can be understood. They need to do this, of course, in a relevant and robust way. For example, if clinicians provide explanatory frameworks that are too generic for the patient to feel it is about their bodyFootnote 20 or provide explanations or meaning-making tools that do not match the experiences of the patient once they step outside the consultation room, the bodily reintegration will not be successful. I grant, and in fact am entirely on board with, the idea that demonstrating or conveying biomedical or causal-explanatory understanding can be very strong tools for conveying such a robust feeling of intelligibility. As such, I am not arguing against the kinds of understanding explicated by Broadbent, Varga, and Maung. However, they are not the only ways to reestablish the body as intelligible, and they fail if they explain abstract diseases rather than symptoms specific to the patient’s body. In the phenomenological conception of a symptom as something that renders one’s own body alien and the world incomprehensible, the understanding we require from clinical medicine is thus not merely an objectual understanding of the underlying disease applied to the patient case, nor necessarily a causal explanation of the “patient data”—although both may be helpful. Instead, I suggest we think more broadly that the business of medicine is to provide means of bodily reintegration by way of conveying a robust sense of intelligibility along with more theoretical or generalizable kinds of understanding that can guide the patient in practically getting back to grips with the world.
5. An intelligible body and diagnosis as a means of worldly reintegration
Returning to Emily’s request, what remains is to address what function diagnosis could have had in the picture I have painted. I have argued that although Emily sees effective intervention, allowing a restoration of her body’s practical abilities, cure without understanding misses out on the element that addresses the restoration of a sense of ownership and trust in one’s body and one’s world—it does not address the existential loss. Emily and patients like her may feel physically better but still be left alienated and thus feel disappointed with the clinical encounter. How might diagnosis help dispel alienation and restore a sense of intelligibility?
As mentioned at the outset, there is a host of diagnostic functions—Maung lists nine, including the “semiotic” meaning-making function for patients, which relates to some degree to the existential reintegration I have discussed here (Maung Reference Maung, Tekin and Bluhm2019, 511; see also Brinkmann Reference Brinkmann2014). While Maung’s errand is to show that most functions gain justification by reference to the (biomedical) explanatory function—noting, for example, that “[p]art of why a diagnosis serves as a meaningful sign for the patient [i.e., has a ‘semiotic function’] is because it is taken to provide an explanation of why he or she has been suffering from his or her symptoms” (Maung Reference Maung, Tekin and Bluhm2019, 514)—he is also careful to say that this reliance on biomedical explanation is not necessary, even if desirable. One other important function of diagnosis is what Maung calls the “classificatory” function (Maung Reference Maung, Tekin and Bluhm2019, 510). A diagnosis sorts items of the world into entities of one or the other class. Again, in a standard view, this function is important because it points us to the causal explanation of the disease that we need to understand. However, classification involves more than invoking an abstract concept of a disease (the intension); it also involves an extension, that is, labeling concrete items as being or not being of that class. When a diagnosis is asserted for a patient, it picks out their body as an instance of a larger group. This is what is lacking in the disjunctive/probabilistic explanations which Emily has had access to prior to her clinical consultation: The disjunctive/probabilistic explanations are generic and anonymous, they provide information that helps the patient address the practical symptom, but they do not address the own-body alienation because they are not about the patient’s body.
Naming a class for one’s body offers the possibility of bodily intelligibility in at least two ways. First, it signals familiarity, conveying to the patient “we recognize what is happening to your body,” even if, as a matter of fact, we don’t know much else. Second, even if we do not have explanatory understanding, a class provides access to a network of cultural and social resources for meaning making in patient groups of different kinds, as described by Brinkmann (Reference Brinkmann2014) in the case of attention deficit hyperactivity disorder. Jutel writes: “Receiving a diagnosis is like being handed a road map in the middle of a forest. It shows the way—but not necessarily the way out. It indicates what the path ahead is going to look like, where it will lead, the difficulty of the climb, and various potential turnoffs along the way. Perhaps it identifies the destination, but not necessarily. With a diagnosis, things don’t necessarily get better, but they become clearer. The unexplained becomes explained, and management is defined” (Jutel Reference Jutel2011, 1). In other words, a diagnosis is a tool that helps both patients and practitioners organize many pieces of information into meaningful, coherent patterns—making a complex situation graspable and the body manageable, both practically and existentially. This way of describing diagnosis might sound akin to Varga’s objectual understanding, with the addition that this kind of understanding is not merely valuable for the medical professional but also for the patient. It is hopefully clear that my view is not one that disagrees with the content of Varga’s analysis: that standard clinical understanding is about connecting the biomedical understanding and knowledge we have to the patient’s body in a meaningful way. A diagnosis can be a very efficient and convenient way to do this. However, my claim is that to some extent, Varga gets the priority the wrong way around: Biomedical understanding is of instrumental value in aiding a sense of bodily intelligibility and worldly reintegration (both practical and existential), rather than personal (communicative) understanding being instrumental in ensuring correct biomedical identification. Returning to the map metaphor: Clinical medicine does not aim at map-making but at understanding landscapes. The upshot of seeing it this way is that there is still a task for the clinician in cases where we do not have maps.
Of course, maps are efficient aids in this practice, and here, the denotive character of diagnosis is clinically relevant. Just as we can hand over a map from one person to another, so does a diagnosis allow different actors to transfer information efficiently to others (Maung Reference Maung, Tekin and Bluhm2019, 510). In other words, a diagnosis, like a map, is an efficient and useful way of conveying understanding, quickly conveying “this is familliar”, “these are the cultural ressources available”, and “this is what we know biomedically”. However, it is possible to convey and aid skillful orientation and navigation without maps—it may just take longer or require more extended interactions. While the GP from the case prompt is unable to provide Emily with a diagnosis and unable to provide anything like the mechanistic explanation that Varga and Maung value, Emily finds some comfort in the 20-minute conversation. In light of what I have argued in this article, this might be because the conversation translated and synthesized a complex set of information—about probabilistic knowledge of people with similar symptoms, about previous negative diagnostic attempts, about our generalizable biomedical knowledge or theories of disorders related or partially relevant, and potentially about other patients with similar experiences—into something specifically about Emily and the symptoms she has lived with. And so, even if the GP did not have a road map she could easily hand over, she might have still been able to provide some means for worldly reintegration. Just as cure is possible without diagnosis, so is worldly reintegration. However, both become much harder without it.
Before I end, it is worth noting that just as diagnosis is not necessary for bodily reintegration, diagnosis may not guarantee it, either. For example, a diagnosis may be entirely correct but highly unfamiliar to the patient—perhaps they are traveling, and their diagnosis is given in a foreign language—in such cases, whether or not the clinician manages to convey to the patient that their body is intelligible will depend on other clinical and interactional cues. It may also be the case that the diagnosis itself is the cause of bodily distrust or alienation, such as in cases of asymptomatic findings or the ascription of a “silent disease” like hypertension—in such cases, we might argue that the “diagnostic finding” is what triggers the existential rupture, while it may still be the case that the diagnosis itself comes with a potential bodily reintegration (see also footnote 14 and 22). More radically, diagnosis as a classificatory and explanatory act can cause existential rupture when the diagnostic category carries severe symbolic meaning, such as cancer (e.g., Pascal and Endacott Reference Pascal and Endacott2010; see also Manderson Reference Manderson2020 for more general reflections). In such cases, demonstrating bodily intelligibility may not be sufficient for the reestablishment of bodily trust, and in the best scenario, supplementary support in the form of counseling, therapy, or health-care professionals trained in existential care should be provided. Finally, of course, it is the case that a nonrobust diagnosis will only provide very temporary benefits. This can be the case either because a diagnosis is not fitting or because the variation within a diagnostic category is not sufficiently explained to the patient, such that they quickly find a mismatch between their own body and what they were told in the clinic. Such mismatches are problematic because they reinforce the bodily monitoring and reactivate the need for explanation while also undermining the trust in health-care professionals and hence the means to redress this.Footnote 21 In Emily’s case, the GP’s resistance toward asserting any of the diagnostic categories discussed during the consultation may stem from two of these risks: the symbolic meaning attached to some of the options—such as fibromyalgia and functional disorders, which both come with controversy and a notion of incurability. Given the limited interventionist difference these diagnostic categories would offer Emily in her current situation, asserting a diagnosis that may cause further existential rupture rather than help address this problem is not beneficial. In addition, the possible mismatch between each of the potential diagnostic categories and the full symptom picture in Emily’s case raises a risk that an assertion of one category may, in the face of discrepancy, lead to questions and doubt rather than bodily reintegration. And again, because Emily is already seeing improvement, addressing the practical reintegration, there seems to be less benefit in making such an assertion. However, the need to address the existential rupture remains, and the GP needs to draw on other resources.
In summary: Drawing from phenomenology, we can characterize the clinical encounter as occasioned by a patient seeking medical help because something persistently (or severely) insults their habitual bodily integration into the world—and so, what they expect from the clinician is a means of reintegration.Footnote 22 This involves, of course, interventions and predictions based on biomedical knowledge and an objectual understanding of disease. It also involves interpersonal communicative understanding to practice medicine ethically and avoid misunderstandings. But in addition to this, it involves an aspect of providing the means for regaining a grasp on one’s own body in the world, that is, for seeing the body as intelligble. I agree, then, with Broadbent and Varga that understanding is central to medicine. I think Emily’s case supports this claim to the point where understanding is requested even in the face of a cure without it. However, Broadbent and Varga get it wrong, or at least they are not getting it quite right, when they center their account of understanding on disease and on providing mechanistic explanation. While this biomedical conception may work from the point of view of medical science and scientific reasoning about disease, it does not fit clinical practice, where the target of understanding is not generalizable disease but individual patient bodies and the symptoms that affect them. While biomedical objectual understanding and mechanistic explanatory understanding are undoubtedly key contributors in regaining control of and understanding the patient body as a whole, they are so only insofar as they contribute to two kinds of bodily reintegration—namely, a practical reintegration and an existential reintegration, which renders the body intelligible in the first place.
Acknowledgments
I am indebted to the eASY research team at Aarhus University Hospital for inviting me into their research project, as well as to the doctors and patients who participated in interviews and shared their experiences, joys, and frustrations. The idea for the article developed in early conversations with Simone Grytter. Marianne Rosendal provided useful input on the case aspects of the manuscript. And Hasok Chang and Oscar Westerblad provided vital philosophical critique and support when the ideas were still fuzzy. Chang, Westerblad, and other members of the Hasok Chang research group also provided helpful feedback on later drafts of the article, as did two anonymous reviewers. Work on this article was supported by Innovation Fund Denmark, TrygFonden, and the Carlsberg Foundation.
Open access
