What it means to care for a person with a chronic disease: integrating the patient’s experience into the medical viewpoint
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In this contribution, we intend to shed light on the challenges involved in the requirement for greater medical attention to the meaning of chronic illness for the person affected by it. Two philosophical approaches dating from the twentieth century, hermeneutics and phenomenology, are especially pertinent to this questioning about the meaning of chronic illness for the patient. After making a clear distinction between merely listening to the patient in order to improve diagnosis and treatment and applying interest to the actual meaning of the disease for the person who has it (I), our contribution presents the ideas of H. Gadamer and S. K. Toombs, demonstrating the grounds for these approaches and the structure of their reasoning (II). These approaches underscore the fact that there is a gap between the way each agent, doctor and patient, views the disease. They suggest bridging the gap by recommending that doctors integrate the viewpoint rooted in the patient’s first-person experience of the disease into their own viewpoint as health-care professionals. We shall examine this ambition, its conditions and limitations. Is it possible to integrate a medical viewpoint and patient experience? How would these recommendations be implemented, in daily practice? What issues will arise from such an integration (III)?
KeywordsChronic condition Lived experience (of the illness) Hermeneutics Phenomenology Medical action
In the past several decades, all over the world, the number of diseases described as “chronic” has increased sharply (Coste 2014; Weisz 2014). Because these pathologies are characterised by “uncertainty, long course, and management as opposed to cure” (Baszanger 1986), the patient is an “essential agent” in the management of the disease. In fact, “chronic diseases are usually discussed in terms of months and years; actually, in most cases, the disease will last for the remainder of the patient’s life. As a result, the disease cannot be seen as a parenthetical episode—even a nasty one—in the private and social life of these patients and their families” (Baszanger 1986). As the same author notes, “crisis becomes routine” (Baszanger 1986). Moreover, chronic diseases challenge health-care professionals’ pathology-management procedures: “instead of the usual progression, symptom-diagnosis-treatment-cure” (Baszanger 1986; Mol 2006), an ever-open, uncertain process unfolds, with its ups and downs. The onset of a chronic disease implies a destabilisation, perceived as radical and irreversible by the patient. No solace can be found in taking the type of action that is usually associated with fighting an acute pathology: namely, the search for effective treatment. The pathology could even be said to be chronic precisely because treatment fails to cure the person. In daily life, the person with the illness must make constant adjustments to his or her way of life. Some of these changes are so profound that chronic disease has sometimes been called a “biographical disruption” (Bury 1982; Gisquet 2008).
According to Bury, it is appropriate to examine the responses society has developed to deal with chronic illness and the issue of the patients’ social inclusion, along with strategies, or “coping abilities”, conceived by patients exploring the fuzzy contours of such a disease and the lack of established treatment protocols (Bury 1982, 1988, 1991; Thomas and Davis 1963; Davis 1973; Gisquet 2008). Taylor and Stanton have studied patients’ reactions and initiatives, and the reasons why they respond (or not) to the demand they become involved in the management of the disease. Their study also shows that persons diagnosed with a chronic illness may describe the quality of their life as good. The experience of chronic disease is not necessarily negative (Taylor and Stanton 2007; see also de Ridder et al. 2008). However, Nordenfelt has pointed out a broad spectrum of suffering associated with chronic disease (Nordenfelt 1995). Some of the pain is related to the effects of treatment, but the fear of being forced to undergo treatment is also a factor. So are the negative feelings generated by the disease, the diagnosis, and prognosis, whether they are uncertain or, on the contrary, well known. The impact of the disease and its management on daily life and social and emotional relationships may also lead to suffering. Nordenfelt has chosen to focus on the work of the doctors, and the implications of chronic disease for medical practice.1 His thinking is based on a conceptual analysis of the idea of suffering, and he emphasizes the need for medical practitioners to address the patient’s psychological condition: to be attentive to his or her distress and anxiety and the effects of the disease on his or her conception of life. Nordenfelt sees a need to invent an art of health care which confronts, alongside the patient, the challenge of years of life with a disease that may be incurable.
In this contribution, we intend to shed light on the challenges involved in the requirement for greater attention to the meaning of the disease for the person affected by it. Two philosophical approaches dating from the twentieth century, hermeneutics and phenomenology, are especially pertinent to this questioning about the meaning of chronic illness for the patient. Our contribution presents the ideas of H. Gadamer and S. K. Toombs, demonstrating the grounds for these approaches and the structure of their reasoning. These approaches underscore the fact that there is a gap between the way each agent, doctor and patient, views the disease. They are an invitation to bridge this gap, suggesting that doctors integrate the viewpoint rooted in the patient’s experience of the disease into their own viewpoint as health-care professionals.
The following essay takes the reader through three phases of reasoning. First of all, it is appropriate to make a clear distinction between merely listening to the patient in order to improve diagnosis and treatment, on the one hand, and applying interest to the actual meaning of the disease for the person who has it, on the other (I). Once we have established this distinction, we shall see how these two approaches consider a medical viewpoint and a viewpoint associated with the experience of the disease; how they define each viewpoint; and the claims they put forth for the distance they assert (II). Lastly—and this will be the main focus of our contribution—we shall examine their suggestions for bridging the distance between doctor and patient viewpoints, and their limitations. Is it possible to integrate a medical viewpoint and patient experience? How would these recommendations be implemented, in daily practice? What issues will arise from such an integration (III)?
Applying interest to the patient’s discourse on his or her disease: a tool for the doctor
Taking an interest in one’s patient, and not only in the disease, or taking as much interest in each, does not necessarily mean that one ponders the meaning of the disease for the patient, and the patient’s experience. To begin with an example, when diabetologist G. Reach formulates the crucial issue of therapeutic observance, asking “What makes a person commit to treatment?” (Reach 2007), his subject is certainly the patient. However, examining the meaning of the illness for the patient does not really fit into this context. This meaning can only be grasped for each unique situation, a level of analysis which is totally irrelevant to G. Reach’s argumentation. As a matter of fact, his approach, based on the categories of the mind and psychological conditions, provides insight into the relationship to the disease that is not the same as questioning the meaning of the disease for the patient and the patient’s experience. Reach aims to define the rational foundations for therapeutic observance, and to identify the reasons why certain patients decide not to comply with the doctor’s advice. He asks the following questions: How do our beliefs enable us to justify our actions? Does our relationship to time have an impact on our behaviour? Is there a connection between certain mental states and our decision to accept treatment (or not)?
More generally, attention to the patient’s words can be associated with the goal of improving the diagnosis and prognosis. This type of listening sharpens medical skill, because the patient’s perception of his or her illness, the “subjective body” (Canguilhem 2002), and the words the patient finds to describe such and such a symptom help the doctor identify the ill causing the suffering. Aiming for knowledge is fundamental, and it is in relation to this knowledge that the “body experience” is relevant (Canguilhem 2002). As followers of G. Canguilhem’s observations, we could call this the “exegetic” dimension of medical practice. In the case of chronic illnesses, this “exegesis” is valuable, because doctors sometimes struggle to establish a diagnosis; early detection of a disease is even more difficult. As Baszanger reminds us, the symptoms of most of these diseases appear in an “insidious” way, “creeping up” on the patient (Baszanger 1986). They have been described as “silent” disorders, or ones that develop “quietly”. In fact, individuals who are already ill without knowing it do not always visit the doctor, because they do not interpret such or such a sign as the symptom of a disease. Certain signs are misleading, moreover. As for the doctors, they do not always have the tools at their disposal to enable them to establish a diagnosis with certainty. The clinical categories they use or forge can accommodate uncertainty to varying degrees. These categories are provisional and perfectible by nature. The consequence of this de facto state is the long temporality leading to the expression of a diagnosis, in the course of which the patient sometimes becomes the doctor’s collaborator: “the patient organises his or her symptoms in such a way as to make them recognizable by the doctor” (Baszanger 1986).
In chronic-illness situations, we also find a function of listening to the patient from the therapeutic point of view. The chronic disease never leaves the individuals who have contracted it; instead, it evolves. As a result, the patients are not the passive receivers of a treatment aimed at a cure; on the contrary, they themselves often appear to be administering therapeutic functions “generally reserved for doctors” (Baszanger 1986). This point goes beyond the question we raised earlier, of adherence to the medically-prescribed treatments. Because the disease and its development have a sometimes significant impact, which changes as time goes on, on the patient’s way of life, the patient’s thinking about the latter is an integral part of their first-person perception of the pathology: what are they ready to accept? How do they envisage their employment, and the way they work? Have their family life and social life been disrupted? And so on. In other words, how does the patient evaluate the treatments that are offered, on the basis of an overall consideration of life (Baszanger 1986; Strauss et al. 1984; Waterlot 2010)? In this perspective, it is essential for the doctor to listen to what the patient says about the illness, in order to understand what treatment will readily be accepted, and to orient the patient wisely in relation to the development of the disease and possibilities for providing care.
On the patient’s experience from the medical viewpoint: asserting the distance
Separate from this listening to the patient motivated by diagnostic and/or therapeutic reasons, certain analyses emphasize, on the basis of hermeneutic and phenomenological approaches, the necessity to consider the patient’s first-person experience in and of itself, and to grasp the distance that separates this viewpoint from the consideration of the disease from a medical viewpoint. Without claiming to be exhaustive, we shall present both approaches. For hermeneutics, we refer to the writings of H. Gadamer; for phenomenology, we draw on the work of S. K. Toombs. Their reflection illustrates an attempt to reach two goals. On the one hand, they may demonstrate the distance between two points of view on disease: one associated with the physician’s perspective; the other, with the patient’s experience. Secondly, by modifying the meaning of medical practice, they seek to bridge the distance. But they also elicit some discussion. The elements of this discussion will be presented after we outline these writers’ viewpoints.
These two approaches are similar in that they conceptualise a figure different from that of the “patient”: that of the “ill person” (Le Blanc 2010). They are also alike in that they reject M. Bury’s proposal to make a distinction between two separate meanings of chronic illness: one associated with the consequences of the illness on the individual’s daily life, and the other with the symbolic impact of the illness on the person’s identity (Bury 1988). True, in order to classify objects in a sociological study, it could be productive to distinguish between these two aspects. However, the philosophical reflections presented here consider the meaning of the illness to be indivisible. The ill person conceives of the symbolic impact of the pathology on his or her identity on the basis of, and in, its consequences for his or her daily life, and how it affects his or her body, activities, and relationships.
Although both of these approaches explore the relationship between the medical viewpoint and the patient viewpoint, one of the first salient characteristics of H. Gadamer’s hermeneutical proposal is that he does not seek arguments to support his claim that there is a gap between the patient’s first-person experience and the medical viewpoint. His reflection takes this gap for granted, as a fact which is the source of the meaning of the interpretative work and the dialogue he wishes to elicit. Actually, according to him, there is a way of envisaging the illness that is unique to the ill person. The very choice of the term “ill person” rather than “patient” is significant. By adopting it, H. Gadamer intends to dissociate the ill person from the patient-physician relationship, thereby restoring an autonomy that had gotten lost in the relationship. According to Gadamer, the ill person’s consciousness of the illness does not fit into the way the physician conceives of the pathology: “the ill person becomes conscious of his illness by a feeling of deficiency” (Gadamer 1998).
As for S. Kay Toombs, she has sought to make the reasons for this gap evident. Having suffered from multiple sclerosis diagnosed in 1973, she has reported on her condition several times, and made it the starting point for her philosophical reflection on the lived experience of chronic illness and disability (Toombs et al. 1995, 2009; see also Carel 2010, 2012, 2014, 2015; Carel and Macnaughton 2012). She has found in the phenomenological tradition resources which H. Gadamer did not perceive, though he is a disciple of M. Heidegger and E. Husserl. According to H. Gadamer, “Heidegger was himself forced to admit that he had not reflected precisely on the problem of the body”; and this problem remained “marginal” for Husserl, although he did acknowledge that “the sphere of individuality and all that, for us, correlates to the experience of the body and its given reality” were a crucial issue (Gadamer 1998).
As we shall see, the viewpoint of S. Kay Toombs is altogether different on the resources offered by phenomenology. Let us review her approach and what she has borrowed from phenomenology. She starts from the observation that physicians and patients are apparently unable to understand each other and communicate:
My interest in exploring the nature of the patient’s and the physician’s understanding of illness has grown out of my own experience as a multiple sclerosis patient. In discussing my illness with physicians, it has often seemed to me that we have been somehow talking at cross purposes, discussing different things, never quite reaching one another. This inability to communicate does not, for the most part, result from inattentiveness or insensitivity but from a fundamental disagreement about the nature of illness. Rather than representing a shared reality between us, illness represents two quite distinct realities—the meaning of one being significantly and distinctively different from the meaning of the other (Toombs 1987 and 1992).
Phenomenology, which she sometimes calls “psychological phenomenology” (Toombs 1987), intervenes to analyse this distance, by virtue of its descriptive abilities and its orientation towards the activity of the consciousness (Toombs 1987). In order to produce this analysis, she combines several phenomenological references. The reference to E. Husserl is above all a means of accounting for the way the patient elaborates the meaning of the illness for him or herself. Then S. K. Toombs turns to A. Schutz, who opted for a vision of the individual as from the outset socialised and intersubjective. Her reading of Schutz leads her to examine specifically the question of the “shared world” of the patient and the physician (Toombs 1987). According to her, this “shared world” does not exist sponte sua. It must be willed into being and constructed by both agents in the healthcare situation. This is because the idea of illness has several meanings, and patient and doctor do not share the same understanding of it. In particular, Toombs is careful to insist on the fundamental distinction, in her eyes, between a meaning anchored in lived experience and a meaning that is elaborated on the basis of an abstraction of the lived experience.
To conceptualise this distinction, S. K. Toombs mobilises J. P. Sartre who, in Being and Nothingness, distinguished four levels of analysis of suffering and disease (Sartre 1943). First of all, disease is apprehended through a pre-reflective sensory experience: as a pain, for example, which becomes the very filter of the person’s relationship to the world at a given time. When I begin to think about my pain, it becomes an object of my consciousness. A second level of analysis is thereby constituted: that of the pain as a mental object. The third level corresponds to the time when I represent to myself the pain or illness affecting me as a “disease”. At this level, the disease no longer belongs to the field of lived experience: it is an abstract idea. The fourth and last level that exists refers to the way medical science apprehends my disease: as a pathological condition, described on the basis of an explanatory device grounded in the state of the medical art. Here, the disease is construed as a “natural” phenomenon (Toombs 1987), and the symptoms are understood as physical signs of the disease state.
S. K. Toombs has drawn upon her own experience with disease and the disorders it causes to illustrate these four levels of understanding:
It is important to emphasize that the “disease state” conceptualized by the physician is not identical with the “disease” which is apprehended by the patient. A concrete example may serve to illustrate this distinction. Suppose one has a neurological disorder: At the pre-reflective level the disorder is immediately experienced as a dragging of the leg which manifests itself in terms of the inability to climb the stairs without difficulty, a propensity for tripping up the curb, and so forth. At the reflective level, the dragging of the leg is apprehended as “suffered illness.” It signifies or points to a more complex entity of which the dragging of the leg is but one part. Furthermore, it is experienced not simply as the inability to climb the stairs but as a disorder which is located “in the leg” or “in my leg.” When the illness becomes further construed as “disease,” the dragging of the leg is experienced as “a dragging of the leg which may indicate neurological disease” or as “possible multiple sclerosis” or “possible brain tumor.” If a visit to the physician confirms, say, “multiple sclerosis” then from that point on one thematizes the dragging of the leg as “multiple sclerosis.” Consequently, if asked how one is faring, one is likely to say “the multiple sclerosis is progressing” or “I’m having problems with the M.S.” It is important to recognize, however, that even though, as a patient, one may understand one’s “disease” as “multiple sclerosis” and, consequently, as involving a disruption of the nerve pathways which control motor functioning, one does not experience the disruption of the nerve pathways directly (i.e., one does not directly experience the lesion in the central nervous system which is the disease known by the physician) (Toombs 1992).”
Following M. Merleau-Ponty, S. K. Toombs makes a special focus on the pre-reflective level to stress the idea that the body is not an object: I am my body, I am an essentially embodied subject and, what is more, this body, my body, is the centre of reference from which I orient myself in the world; it is my point of view on the world (Merleau-Ponty 1945). This lived body is the primary vector of our knowledge about the world. Its relationship to the world precedes any thinking activity or conceptualisation. From the viewpoint of pre-reflective perception, when the body is ill, an entirely different relationship to myself and to the world is formed (Merleau-Ponty 1945). Bodily intentionality is frustrated. Simple actions become complicated or even impossible.
In this perspective, Toombs gives an account of the development of her own illness, and its impact on her existence:
Over the past twenty-eight years (since the age of 30) my physical capacities have altered in a startling number of ways. At one time or another my illness has affected my ability to see, to feel, to move, to hear, to stand up, to sit up, to walk, to control my bowels and my bladder, and to maintain my balance. Some abilities, such as sensing the position of a limb, I have lost abruptly and then slowly regained. Some, such as clear vision in one or the other eye, I have lost and regained numerous times. Other physical capacities have disappeared and never returned. I can, for example, no longer walk because I am unable to lift my legs. This latter change has, however, been gradual. For a number of years, although the muscles in my legs gradually weakened, I was able to get around “on my own two feet” using first a cane, then crutches, and finally a walker for support. Several years ago I was forced to give up the walker and begin full-time use of a wheelchair for mobility (Toombs 2001).”
Her statements illustrate how the sphere of bodily action and practical possibility gradually wanes. Correlatively, a multiplicity of emotions, feelings, and questions suddenly assail the ill person: The “I can do it again” can never be taken for granted (Toombs 1992). The body-image of the self changes; certain things or actions become unattainable; for example, when I become unable to avoid or go around an obstacle, I may feel that my body no longer interprets the world correctly. This body, my body, may become uncanny to myself (Svenaeus 2000, 2001); my condition forces me to pay more attention to it than I used to; I have an unpleasant feeling that I have lost all control of it; it seems to me that my body’s integrity is no longer something I can take for granted; and unanswerable questions arise: did I cause my illness? Is it something I deserve? When will I ever regain the evidence of my relationship to and familiarity with the world, and my ease of movement? (Toombs 1992; Charmaz 1983).
In comparison with this description, there is a substantial difference in the way I apprehend my body as object. Illness then corresponds to an organic dysfunction. From a scientific viewpoint (the fourth level of analysis defined above), the body is construed according to a “mechanistic” or “naturalist” perspective (Toombs 1992). Instead of being apprehended in situ, in the world, it is understood as an object separated from it. Illness understood from this angle does not correspond to the patient’s lived experience (Toombs 1992). If we follow the assertions of S. K. Toombs, we are dealing on the one hand with a medical viewpoint, scientifically elaborated and structured, which approaches illness as a pathological state, and on the other hand, with a viewpoint associated with the patient’s experience (bodily and worldly).
If S. K. Toombs was able to draw on phenomenological thought for her reflection, unlike H. Gadamer, who believed he could not, it is doubtless because she has a style of reasoning that leads her to move freely within the phenomenological tradition, borrowing the arguments she needs to support her case from a variety of authors, without limiting herself, in fact, to M. Heidegger and E. Husserl.2 Despite this difference of approach, Toombs and Gadamer agree when they state the need to lessen the distance between the medical viewpoint and the point of view rooted in the patient’s lived experience: that is, the need to reform the medical approach to the chronic condition by integrating the patient’s point of view into the medical one.
Making the lived experience of the chronically ill an object of medical care
H. Gadamer’s thinking directs our attention to the human being as subject, to self-understanding, and to the ethical question of the purpose of human existence. Insofar as the chronically ill must learn to live with their disease, attention to subjectivity must play a central role, in his eyes, in the medicine of chronicity. According to him, acceptance of the illness, when no cure is in sight, poses a special problem to the patient (as well as to the doctor, whose scope of action is limited to offering treatments that stop the pain and the illness). He insists that “psychological care” be part of the treatment of chronic illness, in order to help, as much as possible, the patient dealing with an incurable illness (Gadamer 1998). He does not develop this idea any further, simply suggesting that the doctor draw upon the resources of dialogue with the patient (Gadamer 1998). For Gadamer, appropriate treatment for chronic illness includes caring for the ill person as such, confronting the challenge to “live with” and accept the illness (Gadamer 1998).3
S. K. Toombs focused on qualifying the figure of the physician mindful of bridging the gap between the medical viewpoint and the one associated with the lived experience of illness. She suggested a redefinition of medical care as “healing”, the main aspects of which we shall present below. According to her, as soon as the difference between the way the physician and patient apprehend the illness is taken into account by the former, it becomes possible for the physician to face certain questions with his or her patient. In other words, gaining an awareness of the gap has immediate consequences for the caregiving relationship, in the sense that the physician can choose to no longer consider the illness only as a scientific category. This then leads the physician to address the disruption of bodily experience caused by the chronic disease, as much as, if not more than, the organic dysfunction:
“To achieve optimal treatment goals and to relieve suffering, it is appropriate to direct attention to the bodily disturbance experienced by the patient rather than limiting our understanding to the objective pathophysiology of the disease state” (Toombs 1992).
The physician also then joins the patient in facing his or her “fundamental anxiety”, no longer seeing it as an issue ancillary to the illness, outside the realm of his professional skills: “a dysfunction in the biological body represents a concurrent disruption of the patient’s being-in-the-world. (…) When the body breaks down, so does the life” (Toombs 1992). Here, S. K. Toombs builds on the perspective developed by E. Cassell, who differentiates between “curing”, an exclusively organic medicine, and “healing”, a medical practice that takes the experience of disease into account, understanding “suffering” as the patient’s existential anxiety (Cassell 1978, 2004, 2012, 2014). To go from curative treatment to healing care, the physician must be willing to break away from his “habits of mind” (Toombs 1992); in other words, doctors must give up their “naturalistic” attitude, which tends to objectify the world and to neglect lived experience. Moreover, they must no longer be satisfied with a treatment relationship in which listening to the patient has a place but where, by virtue of habits of mind, what the patient says is reinterpreted and translated into “scientific language” (Toombs 1992).
For S. K. Toombs, this care understood as healing is especially appropriate to the management of chronic illness. Healing is actually aimed at restoring a relationship to the world which, although it is not necessarily identical to the one previous to the illness, helps the patient find a place in the world that is as fulfilling as possible. Moreover, chronic illnesses belong to the category of diseases in which “the disintegration of self and world is felt most profoundly” (Toombs 1992). The effort to restore a comfortable relationship with the world is therefore all the more important. It signifies that the physician seeks not only “to reassure” the patient, to enable the person to accept the illness with patience, but also to regain a feeling of bodily integrity and control, as opposed to the anxiety of helplessness and loss of freedom (Toombs 1992). In caring for a person with chronic illness, S. K. Toombs suggests that the physician revise his or her ambitions, and aim chiefly to strengthen the patient’s ability to cope with the disturbances of the self.
To our way of thinking, these new proposals for the optimal medical treatment of chronic conditions, based on hermeneutical or phenomenological approaches, prompt a crucial issue for medical practice. However, certain points deserve further clarification. The first concerns the description of the medical viewpoint, seen here as “the culprit” because it fails to apprehend the patient’s lived experience and the implications of this experience for medical care. This article is not the place to develop the point at length, but in the case of chronic diseases, just as for non-chronic ones, it is important to note that this viewpoint—which sees the disease as a scientific category—is not self-evident in the least. It is undeniably a filter, but an elaborate and structured filter, open to evolution, in fact, depending on the state of the medical art. In the argument which advocates integrating the viewpoint associated with lived experience, a revision of the medical viewpoint’s position as “the guilty party” is necessary, in our opinion, in order to make progress towards an alliance between medicine and philosophy, rather than an opposition.
The second point also concerns the relationship between philosophy and medicine. The assertions of H. Gadamer and, even more, those of S. K. Toombs, may leave the reader with the impression that demonstrating the distance between the physician’s view of the disease and the view associated with lived experience is above all a matter of philosophical insight: an outside observation, pinpointing a problem in medical practice. However, it would be worthwhile to undertake a study surveying the attempts doctors have made, within their clinical practice, to bridge this gap and redefine their medical practice as a function of the patient’s lived experience. Such a catalogue would enable us to identify the times, specialties, health systems, and medical training curricula that promote an awareness of this gap and aim at overcoming it.
Here, we shall limit ourselves to citing a single example, that of the neurologist and psychiatrist K. Goldstein. His work is quite relevant to our subject, because it involved patients who, although they do not fit the usual definition of “chronically ill”, were described as persons who had sustained such severe damage that they would never recover. K. Goldstein himself elaborated on how his clinical practice led him to pay attention to the patient’s first-person experience, and make it a central element of his conception of medicine. He mentioned the beginning his career in a university hospital specializing in psychiatric illness. There, he observed that the results were satisfying in terms of research, but disappointing in terms of therapy, especially for war veterans who had suffered brain injuries for which there was no known treatment:
Only a few neurologists, including myself, protested against the inadequate treatment of these patients, and put forth the idea that their condition could be improved so much that they might again believe their lives were worth living, despite irreversible deficiencies (Goldstein 1971).
He suggested the following analysis of their condition: according to him, the principal effect of these injuries was a temporary or permanent difficulty with or inability to accomplish certain mental or physical tasks. As a result, the injured person’s relationship to the world and others was weakened and precarious; and her personality had changed to some degree. Goldstein described this phenomenon as “functional disintegration” (Goldstein 2000). To characterise his patients’ relationship to the world, he proposed a distinction between two types of behaviour: “orderly” or “normal” behaviour, and “disorderly” or “catastrophic” behaviour. The first was associated with “a feeling of activity, ease, well-being, relaxation, adaptation to the world, and pleasure” felt by the patient, while in the second case, “the patient feels hindered, pulled in different directions, vacillating, and he has the inner experience that both the world around him and his own body are shaken up” (Goldstein 2000).
This analysis had a decisive impact on the way he construed medicine and disease states. It convinced him that brain damage could not simply be understood as injury to the brain. He noted, in fact, that a person might have a stroke which did not alter his or her ability to attain his or her goals in relation to the world and others. Goldstein maintained the terms pathological condition or disease state were not justified unless such an alteration had occurred, and the person felt constant free-floating anxiety, a feeling that he was in danger. Moreover, according to K. Goldstein, to deal with any disease or condition from which the patient would never fully recover (Goldstein 1971), medicine had to adopt a “holistic” approach to human nature, by contrast with a practice based solely on the “atomistic” method which had enabled medical researchers to develop knowledge (Goldstein 1971). More precisely, according to K. Goldstein, the two had to be combined: medical research would continue to “isolate” brain lesions in order to understand their biology, but the doctor at the patient’s bedside, facing the human being’s feelings of anxiety, had to focus his therapy on those, in order to help the patient go from catastrophic to orderly behaviour in his relationship with the world and others.
Here, the source of the effort to bridge the medical viewpoint and the one associated with the lived experience of illness was a neurologist’s dissatisfaction with the medical viewpoint, arising within clinical practice. To us, this conception of pathological states and the medical practice resulting from it stands out as an exemplary attempt to integrate the patient’s lived experience into the doctor’s viewpoint. It suggests the possibility for a medical eye keen enough to perceive the gap between scientific understanding of illness and the first-person experience of it, and to propose an entirely new vision of clinical practice. It is true that this example cannot be generalised, since K. Goldstein was a physician with a philosophical and anthropological ambition: that is, to care for patients taking into account the nature of man and human beings’ relationship to themselves and to the world. For further investigation on the efforts made to bridge the medical viewpoint and the one associated with the lived experience of illness, we may thus formulate the hypothesis that such efforts are possible on the basis of both a philosophical and a medical perspective, or to say it in other words, of an alliance between philosophy and medicine (Mol 2006).4
The third point of discussion is related to real-world, practical solutions that might be offered, to foster the integration of the patient’s lived experience on the perimeter of medical care. From the ambition to foster such an integration, we cannot jump to the conclusion that the same solution will apply to a whole range of diseases, nor that every pathology demands this care in the same way, nor that every patient will express such expectations. Mainly, it must be pointed out that elaborating such solutions is not an easy task. Like the second point, this particular subject must be construed as a field that is still being explored rather than a question to which we can provide immediate answers. As a result, the following analysis will be confined to a single clinical experiment with integrating the patient’s lived experience into the medical viewpoint.
This example is based on the work of a French medical team at the Pitié-Salpêtrière hospital in Paris, which offers patients with Parkinson’s disease neurosurgical treatment with deep brain stimulation. In 2006, this team published the results of an implementation study to understand the dissonance occurring between the team’s satisfaction, in view of the results obtained from the treatment (reduction of motor disabilities; absence of the side effects related to dopamine treatment; no negative impact on cognitive abilities, relief for symptoms of depression or anxiety) (Agid et al. 2006). As a consequence, to the doctors, it seemed that thanks to this neurosurgical procedure, daily activities were facilitated, and the overall quality of life seemed to improve. However, to the surprise of the medical team, it was observed that patients faced greater difficulties in their social, family, or professional life: they became apathetic, and faced conflicts in their private lives or forms of instability in the context of their careers. The study, published in 2006, tracked the patients over a 24-month period, before and after the surgical procedure. It concerned 29 patients who underwent psychiatric and psychological evaluations. It noted the absence of problems of a psychiatric nature, underscoring difficulties described as “psychological” instead, involving the relationship to the self (bodily) and to others (members of the immediate family or people associated with work and social life). The study concluded by wondering about this discomfort, which was difficult to understand and presented strong contrasts with “the undeniable success of this type of neurosurgery” (Agid et al. 2006). The hypothesis put forth to account for the difficulty emphasized an indirect connection to the complexity of fitting back into a social, family, and professional life rather than a “personality change” (Agid et al. 2006). The study concluded with a recommendation that, in the future, prior to administering deep brain simulation, the psychosocial status of the patient, his family and friends, and work associates, be taken into consideration (Agid et al. 2006).
Next, the medical team that published the study took part in a psycho-educational program designed to avoid these “psychological” difficulties. The results of the program, published in 2017, show that the team did not stop at the idea according to which these patients were feeling “the burden of normality” or “of health”. Instead, they kept trying to account for this difficulty, within the conception of patient follow-up, upstream and downstream of the neurosurgical procedure. A “psychoeducational” program was set up, on an experimental basis. Its primary objectives are to transmit information, to identify the expectations (medical, personal, and relational) of the patients and caregivers, and to prepare them for the coping process in the aftermath of the surgical procedure (Santos et al. 2017).
This approach clearly illustrates the steps taken by a medical team who, after achieving a “medical” success—significant improvement in the symptoms of Parkinson’s disease—was surprised and dismayed to observe patient dissatisfaction. The team then explored ways to explain and remedy this dissatisfaction. To do so, it had to reconsider patient preparation and follow-up procedures, and test a psychoeducational program intended as an appropriate response to the difficulties the patients had encountered. It is notable that the success of the study was in part due to the fact that the medical team was able to describe patient dissatisfaction in terms that enabled it to conceive of more suitable medical care. Such an endeavour is not at all simple. The question remains open as to what happens when medical teams do not succeed in describing their patients’ difficulties according to categories that can be addressed by some form of care.
This attempt to integrate the patient’s lived experience into the medical viewpoint brings us to the fourth and last subject of our discussion: how should this type of endeavour be qualified? Although the fact cannot be generalised, we see that the psychoeducational program in the above experiment was presented as part of patient “perioperative” care. What is more, the program came into being in hindsight; but the possibility remains that in other contexts, an action aiming at the same effect (taking the patient’s lived experience into account, in care) may be conceived from the outset. The question is less that of its timing than that of how to designate it. Should attempts like these be qualified as elements of medical procedure, or in another way—perhaps as a form of psychosocial “support” (Gaille and Horn 2016) that supplements the “medical” treatment? L. Nordenfelt, whose reflections we mentioned in the introduction, believes that a doctor facing a chronic illness, unable to offer curative treatment, must develop other ways of practicing medicine. He differentiates these from medical skills, suggesting that, in his eyes, they refer to an ability to communicate and to a practical ethics wisdom, which make it possible for the physician to help the patient “make do” with the illness, its effects, and those of the treatment. If necessary, the physician and the patient may sit down together to redefine the goals for the patient’s quality of life (Nordenfelt 1995). This issue of designation does not appear to us to be easy to resolve. It concerns the boundaries that are assigned to actions denoted as “medical” and the professional identity and the skills of the persons involved in these action—today, in medical teams, most probably not only the physician. Once again, we seem to be dealing with a realm that still needs to be explored. Terms are used to signify a difference between two types of action (in this case, “medical” and “support”). Is this difference due to the nature of things or is it forged in large part by a set of social, historic, and economic circumstances, along with the construction of professional identity?
Regardless of its diversity of forms, a chronic pathology appears above all to be an “attack” launched on the person’s body, on his or her personal identity. In other words, it is an insult to his or her self-esteem and self-confidence in social interactions. The disease may be perceived as corresponding to a “biographical disruption”. Hence, the issue is to cope with the disease and, as much as possible, to withstand it: to confront it, to tolerate or make do with its effects, to learn to decipher the signs which herald a crisis, and to regain a certain ability to take positive action day-to-day, and claim a place in the various spheres of one’s life in society (Bury 1991).
This description of the chronic condition has led to differentiating between listening to the patient for the purpose of suggesting a diagnosis or treatment, and the type of listening aimed at demonstrating the gap between the medical viewpoint of the illness and the perspective associated with the first-person experience of illness. Hermeneutical and phenomenological approaches prove to be especially appropriate for making this gap manifest. Moreover, the authors we have mentioned in this article go beyond pointing out the gap. By suggesting a conception of medical practice as “healing”, S. K. Toombs shows that her ambition aims at reformulating the very idea of medical care. In a way, the point is to integrate the question of the meaning of the illness for the person who has it into medicine and, on that basis, to redefine medical action. In the same sense, by insisting on the disorientation that plagues a person with a chronic illness, Gadamer indicates that the disorientation is the problem the doctor should fight, alongside his or her patient (Gadamer 1998).
To our understanding, their thinking on the chronic condition does not offer us a conclusive statement. It rather lays the groundwork for further investigation. As a matter of fact, it indicates a normative horizon, a direction to follow, rather than offering a concrete solution for filling the gap between the medical viewpoint and the viewpoint rooted in the first-person experience of illness. The example we mentioned above illustrates a way to elaborate on this issue: that is, to look for and reflect on the attitudes doctors adopt to modulate their approach to illness, when they integrate actions related to the first-person experience of their patients; to clarify their reasons for initiating—or not—these actions, and the extent to which they consider that it is their duty, as doctors, to “take care of” the patient’s experience of illness.
Here, we use the term “doctor” generically, applied to all health-care professionals.
In North America, the phenomenological current emerged in the philosophy of medicine at least as early as the 1970s. Therefore, chronic illness has been analysedaccording to a phenomenological perspective within a theoretical context that was already familiar with and hospitable to this approach (Spicker 1975, 1976, 1986, 1990; Zaner 1971, 1981).
J. Quintin asserts that this hermeneutic perspective is of obvious relevance in the field of psychiatry. According to him, it is a means of reintroducing the question of subjectivity to therapeutic practice and, in particular, to make room for the portion of experience that escapes “conceptualization” and the effort of “objective and methodical knowledge” (Quintin 2005). The reference to hermeneutics also makes it possible to implicate the psychiatrist in the patient’s situation, and not leave him or her outside, in the posture of caregiver-witness, in front of a situation. Moreover, this reference clearly points out the endlessness of the interpretative quest for the meaning of the experience to the patient. Finally, because madness is that which cuts off dialogue, resorting to hermeneutic practice is a valuable tool for psychiatry. Even if it is not effective in every single case, it does support “the patient’s reintegration into shared meaning”.
In this sense, it should be noted that a reading of K. Goldstein nurtured the attention to the ill subject recommended by G. Canguilhem and M. Merleau-Ponty, the former, within his philosophy of the normal and the pathological and the latter in his analyses of the lived world (Gaille 2018).
For their comments and questions, I would like to thank: Charlotte Gilart de Keranflec’h and the participants in the workshop “L’expérience du patient: Sens and implications pratiques” (Projet ANR NormaStim, December 6, 2016, Université Paris Diderot), where an earlier version of this essay was presented. I am also grateful to Joël Coste and Alain Leplège.
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