(1)
Department of Medicine, Primary, Vanderbilt University, Nashville, TN, USA
4.1 Appeal and Response
Encountering another person who is afflicted—whether from illness, injury, or the result of some genetic or congenital disorder—one comes into or happens on the moral order. This occurs, of course, in distinct ways in different sorts of relationships: in the present context, it occurs within the clinical encounter with its characteristic asymmetric relationship of power and vulnerability. The ground of ethics, I have thus only barely suggested, is the reflexive relatedness to and with the other person—perhaps most poignantly presented when we come upon the other-as-stranger, and even more so when the stranger is ill, when in both cases a form of strangeness comes to invade the ongoing interrelationships with other people.
Illness itself is a type of strangeness. Even while we are familiar with the variety of human afflictions, to encounter someone who is sick is to find oneself ineluctably facing something both unknown and a challenge, a dare and an appeal. With the terminally ill person, the scene can be quite dramatic: Are you still there in that body? When you become unconscious, where have you gone? Who, what, are you now? What can and should I do or say? Standing bodily before a dying person whom you do not know, what can you do or say? Perhaps all that can and even should be done is simply to be there with the individuals: mutually interrelated by means of touch, feel, word, look. Each of these only apparently simple gestures is an affirmation of the vulnerable individual as worthwhile. You make a difference; you matter.
There is more to this, for the sick individual’s challenge or appeal is for a response. Most basically, the appeal is to be-with the sick person, to be an affirming presence of his or her continued worth despite impairment—which is not only alienating and debilitating, but at the same time is experienced by the ill person as demoralizing. Being with the sick person is, or can be, therefore, a remoralizing (Kleinman 1988). As many studies have shown, patients want most of all to know what’s wrong, but equally, whether those who take care of them also care for them—do I still matter, am I still worthwhile?
Being-with others is so pervasive in our daily lives that we rarely give it a second thought. But it has another ethically significant side to it, equally taken for granted without thinking. Especially when you encounter an impaired individual, there is a genuine appeal that you sense: ‘put yourself in my shoes!’ or ‘look at it from my point of view!’ Each of us knows this well and often takes up that perspective, as even a little reflection shows. The patient especially presents this challenge, but in so doing the patient is not asking you to be the patient in any literal sense. Nor is she asking you to think and feel what things would be like if you were impaired like her—though such imaginative acts can be instructive. The fact is that you are not that patient, and she is not you. None of us truly knows anyway what we would do, think, or feel, were we in that patient’s circumstances literally, not unless or until illness strikes us.
To ‘put yourself in my shoes’ is, quite simply, an appeal to do what is most natural. Each of us is what he or she is solely within the multiple, reflexive relationships with others, each of us has been enabled-to-be what and how and who we individually are only because of those relationships. The presentation of the impaired individual is for just this reason a kind of invitation to us to be precisely be with him or her just as ourselves, as what and how and who we are—and from and with that to try and think and feel what this patient faces.
Each of us is always and essentially with and by means of others, including this unique other individual who is impaired. As mutually interrelated (as in the example of friends above), the appeal is a challenge for each of us to recognize that even in the relation to a desperately sick individual, or to one with a difficult pregnancy or an injured child, there is an intimacy, an embodied knowing that can, if permitted, affirm the what and how and who of this person, and thereby yourself. This seems to me the core of that “special occasion,” that “other sense” of ethics, Albert Schweitzer identified by means of which our usually dormant moral sense can be brought to the surface (Spiegelberg 1986, pp. 219–30). More on this as I proceed.
Another word for this responsiveness to the patient’s perspective is trust (even if, as in most clinical situations, all that is possible is a kind of temporary trust). Her words and demeanor are an appeal for us to feel-with her; they invite (and thus challenge) us to affiliate with her—and this act, I am led to think, is at the core of the moral order, at least within medicine. In more modest terms, this affiliative feeling or felt mutuality, the dyad care-and-trust, is compassion. To take care of a patient is, if only minimally, to care for the patient, to affirm that he or she matters, and this invokes affiliative feeling with the patient. It may assume quite specific forms, such as respect with its correlative enablement of dignity or integrity, allowing and enabling the other to be precisely what and how and who she is: Mary, with all her blemishes and failings, John with his tactlessness and, yet, dignity. She is one who matters; his life is worthwhile. These specific forms of affiliation, moreover, take on highly individual, embodied gestures: talking and listening, touching and being touched, looking and being looked at, thereby affirming the other’s humanity and worth—in turn receiving affirmation of oneself and one’s own worth. The ‘matter’ of embodiment, if you will, is the ‘stuff’ of value, not the merely measurable stuff of physical extension.
To meet the other who is ill and thereby vulnerable is to encounter a challenge to embody and enact the moral order, in the most concrete ways of the flesh. It is to enter, to ‘come-upon,’ the moral order, to recognize and affirm the other’s appeal by means of responses tuned into the specific other person vividly, being bodily with the other who is bodily with me, in an act that constitutes the core sense of community. We, thou and I, matter to one another while we grow older together (Schutz and Luckmann 1973).
4.2 The Fiduciary and the Professional
In the last Chapter, the significance of trust was broached; it is time to look into this phenomenon more directly. Most who write about trust in clinical encounters conceive it as a fiduciary relationship (Pellegrino et al. 1991). In the following, I want to take exception to that.
The concept of the fiduciary denotes a relation that is commonly assumed to be central to professional ethics. Too often, however, discussions of the relation treat the professional in abstraction from those served (clients, patients, students, etc.). Indeed, those who are served by the professional are conceived as secondary, if not actually extraneous, to the fiduciary relation. Indeed, for some authors, the assumption of the primacy of the professional is often followed by another assumption: the fiduciary is typically taken for granted as a form of paternalism for which beneficence is the governing principle. For instance, in one of his books, H. T. Engelhardt takes both assumptions for granted. The fiduciary appears simply as an adjectival qualifier: “fiduciary paternalism,” that is, the “professional judgment to determine what forms of therapeutic intervention would maximize the patient’s best interests” (Engelhardt 1986, p. 281).1
James Childress seems similarly persuaded. The fiduciary is “another basic value in the medical sphere;” (Childress 1970) it expresses the expectation that the professional’s actions will show respect for the person, and thus is understood as a form of beneficent paternalism. The main question for Childress is thus “whether trust in health care professionals to act as paternalists, that is, as beneficent decision-makers on our behalf, is warranted” (Childress 1982, p. 47).
This position is even clearer in Ruth Faden and Tom Beauchamp’s study of informed consent. Contending that traditional codes of ethics in medicine are focused on the physician’s duties or virtues, they argue that “a paternalistic or authoritarian ethics easily flowed form this.” The emergence of a “language of rights,” however, “abruptly turned the focus in a different direction,” (Faden and Beauchamp 1986, p. 94). That is, away from a fiduciary relation and toward informed consent, to discourse centered more on autonomy, entitlement, and rights than on beneficence. In any event, to think about the fiduciary is for such scholars to think about paternalism, and this concerns the professional first of all, if not exclusively.
It may be that the initial emphasis on the place of the professional, and the de-emphasis on that of those served, is key to the tendency to treat the fiduciary as a matter of paternalism. The danger in this approach is that it risks conceiving professional ethics as unilateral, whereas it is to the contrary reciprocal: clients or patients are quite as essential to the relation as are professionals. In somewhat different terms, client or patient trust is crucial, indeed fundamental, to the understanding of professional trustworthiness.
4.3 Trust and the Trustworthy
With some qualification, Robert Sokolowski’s analysis seems to make the same assumptions; it thus risks muting the place of initial trust in favor of trustworthiness and the fiduciary. That the professional and client relation is fiduciary means for him that the client subordinates some limited part of himself, his prudence, to the professional. The main question thus concerns professional trustworthiness, which can most often “in principle” be assumed from the fact of his/her having been certified as a professional. Thus, Sokolowski believes that there is
an elegant anonymity to professional trustworthiness; if I get sick away form home and must go to the emergency room of a hospital, I can in principle trust doctors and nurses I have never met before…because they are presented as members of the medical profession, persons who are certified by the profession and who can, prima facie, be taken as willing to abide by its norms. (In Pellegrino et al. 1991, p. 31)
Thus, the fiduciary concerns the professional first of all, specifically his or her trustworthiness, which can “in principle,” be trusted precisely because of the “elegant anonymity” of socially approved certification. It thus is clear that client trust is a function of professional trustworthiness; it is, in a way, the guarantee for the former: a patient can trust the professional in view of the elegant anonymity of the latter’s trustworthiness. For all that, however, the client remains the “ultimate agent” since “the professional assumes responsibility for only a limited part of the client’s life” (In Pellegrino et al. 1991, p. 27).
It might be noted that Childress may seem an exception: at one point, for instance, he argues that “if it is effective, paternalism presupposes trust… .” (Childress 1982, p. 47). It is not precisely clear, on the other hand, just how “presuppose” or “effective” are meant, and much depends on that. Nor is it at all obvious that the fiduciary relation is necessarily paternalistic; this is simply taken for granted by these authors. In any event, the more cogent analysis surely ought to focus on the relation itself; that there is a relation is presumed by the relata—that is, by the presence of a professional and a patient or client—hence in some sense client trust and professional trustworthiness are, minimally, both necessary to the relation and are reciprocally related. What needs clear and cautious analysis, however, is what is too often simply taken for granted, the place of the client or patient in the relation: the phenomenon of trust itself. This must not be swallowed up by the professional’s place in the relation, for then there ceases to be a relationship.
4.4 Patient Trust
It is necessary to emphasize the usual way of conceiving these matters, for then it is becomes very clear what is taken for granted: the fiduciary relation from the perspective of the patient or client, that is, the phenomenon of trust itself. As I’ve pointed out elsewhere, in fact, the Hippocratic tradition in medicine places patient trust at the heart of the physician-patient relation. For just this reason, moreover, I’ve taken the mythic figure of Gyges as the polar opposite of the core Hippocratic discipline. Given that the patient is at a distinct disadvantage, and the physician at a distinct advantage, the one with power on his/her side is the physician, who is as such constantly haunted, even tempted, by that power. Why not take advantage of the vulnerable sick person? The Hippocratic tradition is perfectly clear: precisely because of the patient’s vulnerability. For whatever reason the patient turns for help to the would-be healer—whether in light of that “elegant anonymity” that impresses Sokolowski, or something else—there simply can be no relationship, fiduciary or not, with the healer. Hence the relationship must needs have already been initiated by the patient turning to the healer, and that act of initial and initializing trust is the crucial aspect of the phenomenon that requires understanding. More on this significant theme at a later point.
I take it that it is just such considerations which lie behind Edmund Pellegrino and David Thomasma’s key idea: after showing that medicine is an inherently moral discipline, they insist that an “ethics of trust” is its essential feature (Pellegrino and Thomasma 1981, p. 67). With its focus on the vulnerable, sick person, indeed, the classical axiom of medicine since Hippocratic times—“to help or at least to do no harm” (In Jones 1923, p. 165)—makes the initial trust by the patient the central requirement of the fiduciary relationship. To paraphrase Kant, the fiduciary without patient trust is empty; and, it may also turn out that trust without the fiduciary is blind: as suggested, these are strictly reciprocally interrelated.
Elsewhere, Pellegrino argues that the physician “takes upon himself” the responsibility of taking care of the sick, injured, or debilitated, “not as a negotiated task but as an imperative built into the very nature of clinical medicine” (Pellegrino 1983, p. 164). This imperative, I am suggesting, derives from the essential vulnerability of the patient, who places himself (or is placed by others) “in the hands” of the physician in a total response of initial trust, and that it is at once uninvited and sourced in the patient’s vulnerability gives it all the more force and depth.
These matters are, however, more complicated. This is perhaps clearest when it is recognized that what Pellegrino apparently grants at one point he then seriously qualifies. The physician probes and even violates the patient’s body in ways not permitted even to those whom the patient loves, and because of this Pellegrino understands trust as grounded on the trustworthiness of the physician, but does not go on to appreciate the fact that the patient must, as I will shortly point out, place trust in the physician without in the first place knowing whether or not the physician is indeed trustworthy—hence, trust cannot be grounded on the latter.
In their book, Pellegrino and Thomasma argue, “the axiom of care for the vulnerable individual is the ground for an ethics of trust…between doctor and patient” (Pellegrino and Thomasma 1981). The crucial phenomenon, therefore, is quite clearly the vulnerable person’s act of placing himself “in the hands” of the professional: this act receives it proper emphasis only when seen as based in the “axiom of care,” that is, physician trustworthiness.
I will return to this specific point later. For now, it is important to note that, in order to enter into a professional relationship with a physician or other professional providing some form of expert help to others, is to enter a domain that is already textured by multiple forms of trust on the part of the vulnerable individual. Here, a distinction of some significance is needed. In a sense, it is true enough to say that one can trust doctors, lawyers, teachers, and the like, even when they are total strangers, thanks to that “elegant anonymity” of professional trustworthiness noted by Sokolowski and captured by that signed official document regularly found on the doctor’s office wall. The sheer fact of having been socially “certified” as professionals means that clients, patients and the like will typically take it for granted that professionals are “willing to abide” by the norms of the profession.
But note that this omits something quite crucial: the phrase, “I can in principle trust,” can only mean that the professional’s trustworthiness is typified and thus typically taken for granted. In other words, here, “trust” refers strictly to what is taken for granted as part of the typified knowledge each of us has just so far as we are members of the same social world and culture. Probing into specific clinical encounters, however, invariably confronts us with a quite different sense of trust. With illness, injury, handicap or other compromising condition that prompts a visit to a physician, for instance, the patient presents not only specific sorts of bodily and/or mental distress, but also personal suffering and anxiety: any disease is at the same time a “dis-ease.” An essential component of that personal dimension is that, to one degree or another, the person can no longer, by the very fact of illness, take for granted much of what he or she had hitherto been taking for granted: precisely this is compromised and brought into explicit awareness by the debilitating condition. Indeed, that this occurs is a key part of the meaning of the illness experience.
To undergo illness or other form of need sufficient to bring one to a professional is to find that one does not know or cannot do for oneself, and can no longer take just that knowing and doing for granted—whether the action is mowing a lawn, writing a letter, or conversing smoothly with a friend. In fact, one of the most common themes of the fiduciary relation is that even the professional’s typically taken for granted (and “elegantly anonymous”) trustworthiness is itself an issue, a question, for the patient.
Accordingly, a key part of what the illness experience means to the patient is whether trust, even though in many ways unavoidable, is actually warranted; at the very least, this is a question at the outset of the relation to the professional. While it may be that this theme tends to become a more explicit question with more grievous illness—or when the sick person believes things are serious—that is not always the case. Even when the need for help seems or is in fact less serious, many people still express the question, albeit often in more subtle and muted ways.
Illness or being in need of help from the professional other, furthermore, invariably includes various types of uncertainty, which texture every individual encounter. The essential component of the uncertainties any patient experiences arises from the experience of one’s own vulnerability, of having little if any choice but to trust or place oneself “in the hands” of the professional.
4.5 Forms of Unavoidable Trust
From the patient’s perspective, therefore, the professional’s trustworthiness is closely tied up with various forms of unavoidable trust, the very fact of which can only enhance the tensions already ingredient to illness, including no longer being able to take for granted one’s typical ways of relating to other people—who, very often, are strangers and thus who unavoidably enhance those tensions. This phenomenon needs more careful explication, as it has considerable significance for the fiduciary relation.
Consider merely some of the circumstances a sick person faces. As illness variously impairs the ongoing, integral connection of body and self, so too does it alter the ordinary relationships with other people and the surrounding world of things and events. As any of these relationships are more or less disrupted, the patient finds him/herself involved in various kind of unavoidable trust.
Patients have no choice, in a sense, than to trust not only their doctors but a multitude of others as well: nurses, laboratory technicians, researchers, administrative personnel, manufacturers, transporters, and countless (mostly anonymous) others (Hardy 1978). They also have no choice but to trust a great many things: for instance, any healthcare professional must trust that the material used to repair body-parts is appropriate, as also the bandages, drugs, surgical equipment, and still others. They also have to trust in the efficacy of numerous procedures: sterilization, administering of anesthesias, surgical techniques, referrals, preparations of drugs, and so on.
Having no choice but to trust in these and many other ways, communication among those involved in any clinical encounter thereby becomes highly important. A man with lung cancer, for example, emphasized: “when the doctor told me I had this tumor, frankly, it alarmed me, but he did it in such a way that it left me with a feeling of confidence” (Hardy 1978, p. 9). A diabetic patient underscored the point: “if you can’t communicate and you can’t understand your disease, then you don’t have confidence in the medical help you are getting” (Hardy 1978, p. 236).
4.6 Unavoidable Trust and Uncertainty
Illness of itself provokes a need to know and to understand: what’s wrong? Is it serious? What does it mean to and me, for my family, now and in the future? Is my condition curable or only treatable? If treatable, by what means, at what risk, and at what cost? What should I do?
Clinical judgment includes several distinguishable (although inseparable) phases or moments. In Pellegrino’s analysis, clinical judgment answers to three major questions: what is wrong? (diagnosis), what can be done about it? (therapeutic determination), and what ought to be done about it? (prudence) (Pellegrino 1979). To these, however, it is imperative to add the classical sense of prognosis, for every illness renders the future into sharp questions: what’s going to happen? How long with I hurt? How will my family be affected? Will I be able to work? Am I dying?
Each of these moments involves some form of uncertainty and ambiguity—which signify necessary fallibility on the part of the professional. As Robert Hardy (a hospital administrator) discovered in his numerous interviews with patients and their loved ones—before, during and after hospitalization—most were concerned not only to know and understand their medical problems, etc., but equally to know that those who take care of them also care for them. More particularly, the sick person concretely experiences his or her body as a source of uncertainty: for instance, what is causing pain, how long it will last, what it signifies now and for the future, and so on. Precisely in view of these multiple uncertainties, there is always an initial, serious question for every patient: with so much at stake, is trust in this physician truly warranted?
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