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10 Articles in Volume 9, Issue #4
Application of Spinal Segmental Physiology to Evaluating Chronic Pain
Dental Consequences of Pain Management
Facility Profile: Casa Palmera
Intellectual and Moral Tasks in Intersection—Part 2
Milnacipran: A New Treatment Option for Fibromyalgia
Neuroma Pain of the Foot Successfully Managed with Laser Therapy
Opioid Treatment Longevity Study: Interim Report
Pain Management in a Palliative Care Setting
Precursor Amino Acid Therapy
Prolotherapy for Sacroiliac Joint Laxity

Intellectual and Moral Tasks in Intersection—Part 2

Information, Consent, Autonomy, and Agency

What Is Sensed and What Is “Felt”

Pain originates as a sensory signal with unique adverse qualities, and the contribution of these qualities to the pain experience is inextricable to the concept of pain qua “pain.” As Nikola Grahek has stated “…the common and distinctive felt quality of pain is the essential or indispensable component of our total pain experience and why that experience is not pain experience when that component is missing.”1 Simply, without this sensation, the experience would not be “pain.” Suffering without the sensation is possible and perhaps even common, yet we do not universally classify this discomfort as pain. Other types of bodily discomfort such as nausea are imbued with an aversive motivational quality and have the potential to cause suffering; however, we can easily differentiate these discomforts from pain by the nature of the sensation. However, the raw sensation of pain is only pain when it provokes an emotional reaction. This component of the pain experience has been referred to by Melzack as the “affective dimension,”2 and it encompasses the ways which pain changes one’s relationship to the body, his/her existence, and “being-in-the-world.” Similarly, Grahek speaks of the “affective-motivational aspect”; Rodriguez notes the mental dimension of pain; Woessner, through Caudill, includes the psychological/cognitive dimension3; and Moskovitz holds that pain is experienced emotionally due to the “…habits, goals, desires, expectations, roles, and attachments threatened by the experience (of pain).”4 Pain changes the existential being of the patient through the intensity and discomfort of the sensation, its impact on normal and enjoyed activities, and the meaning that the patient ascribes to the pain, i.e. the patient’s evaluation of the pain. The problem of differentiating between mind and body is not one we wish to treat here but, if there is indeed a distinction to be made, it is clear that pain affects both body and mind in fundamental ways.

Expression and Expectation

A necessary correlate to the aversive, affective quality of pain is the pain behavior that it inspires. Woessner, Hardcastle, Turk, and Rudy all address the behavioral dimension of pain,5-7 and attest that to understand pain, it is necessary to note and appreciate its behavioral expression. Roselyn Rey states that “…the manner in which pain is expressed has a direct relation to the way in which pain is actually borne, how it is felt.”8 Clearly then, understanding a patient’s behavioral reaction to pain is essential to clinical assessment and diagnosis. A physician must learn the tendency of a particular patient toward stoicism or over-representation to correctly interpret pain behaviors and verbal ratings.

However, the way in which pain is behaviorally expressed often depends upon social, cultural, and environmental factors that interact with the nature of the internal pain experience. Different cultures have distinctly acceptable expressions of, and for, pain. In addition, cultural ideas and conceptions about pain are strongly tied to the psychological response and affect that is manifested.9 In some cultures, the experience(s) of pain are not seen as disintegrative, but as unifying and intensely spiritual occurrences. For example, the Harvest Festival of rural India includes a ceremony in which a celebrant swings from a platform to bless the crops, held up by metal hooks embedded in his back. Participants report feelings of exhilaration in lieu of pain. Rodriguez speaks to the social, cultural, spiritual, and historical dimensions of pain,10 highlighting the importance of language and the potential for tension as different values and interpretations of ethical principles come in conflict. Thus, both the meaning of pain, as well as outer manifestations of that meaning, are mediated by the socio-cultural environment and world-view of the person in pain.

It is important to note that these dimensions are neither comprehensive nor static. When put into practice, they should be integral to the pain being studied, yet remain distinct from one another, and defined relevant to one’s purposes. Turk and Melzack explain that these components do not always co-occur in time or the same configuration in all people.11 McGuire echoes the importance of defining the dimensions of pain on a case-by-case basis.12 Similarly, Clark employed a multi-dimensional scaling procedure to determine the relative intensity, as well as emotional and somatosensory qualities, of pain in various groups (of volunteers and patients) and found that, while the pain intensity dimension was primary for patients, it was the emotional quality that most affected volunteers.13 He concluded that the subjects, not the researcher, should determine the dimensions of pain. Transposing this construct to the clinical setting, we opine that the clinician should not assume that every patient’s pain can be explained by a single model. Rather, each patient’s pain is unique and is affected—to differing extents—by various combinations of physical and emotional dimensions.

Although behavioral expressions are important to interpreting the pain of an other, behaviors are by no means consistent—both in an individual, and across groups of individuals—given that socio-cultural norms provide a relative baseline for typical and/or accepted patterns of expression which can then vary within, and even between, these parameters. There are several tools that can help to depict the social and cultural factors contributing to pain expression; for example, the West Haven-Yale Multidimensional Pain Inventory (WHYMPI), while primarily a comprehensive affective survey, includes a section on the response of the patient’s significant other to pain behavior. Use of this section may help to illustrate any social or cultural pressures present in the home environment that mask, mitigate, and/or exacerbate pain expression.15 Additional insight to factors influencing a patient’s response to pain can be afforded by the Pain Self-Efficacy Questionnaire, which measures the patient’s confidence level relative to the extent to which pain impacts and interferes with the perceived capacity to engage in daily activities.16

The Role and Value of Information to Clinician and Patient: Philosophical Basis for Informed Consent

Information gained from the patient—both through objective assessment and subjective report—provides a basis from which the clinician can develop a diagnostic impression, literally a “seeing into” the nature of pain as a pathological process. Certainly, this is important to determining “what is wrong” but, as Edmund Pellegrino notes, this information must be further specified to the context of “this patient” (i.e., “what is wrong with this patient”)17, not only in the biomedical sense, but in appreciation for how the pathology of pain affects the life, world and actions of the pain patient as a person. In other words, what does pain—as physical disorder and subjective illness—“do” and what does that “mean” to, and for, a particular patient. In this way, the concept of diagnosis as “seeing into” is not abstract, but assumes personal worth as it allows the clinician to intuit the ways in which the clinical disorder might manifest experiential effect(s) within and upon the values, goals, and self of the patient.

From this arise two of the most prudential activities of the clinical encounter: 1) the decision of how much information can and should be provided to the patient so as to make him/her meaningfully aware of the nature and possible effect(s) of the disorder, and 2) what therapeutic options are available to treat not only the disorder but its manifest expression in this patient—given his/her values, goals, and expectations—and thus will be most useful to uphold his/her best interest(s) (i.e., the selection of what should be done from the range of viable treatment possibilities). These activities are not mutually exclusive; instead, we posit that together they allow for a reciprocal exchange of information between the domains of expert knowledge held by the clinician (i.e., biomedical expert knowledge), and the patient (i.e., expert knowledge of the first-person experience of his/her life and the effect of pain). It is their inter-relatedness that conjoins the patient to the therapeutic and moral fabric of the clinical encounter and establishes the basis of community.18

This prompts the question of what, and how much, information is necessary and/or sufficient to sustain this reciprocal responsibility. Without doubt, veracity—both on the part of the clinician and the patient—is vital to the fiduciary of the medical relationship, and we have addressed the basis and extent of veracity in practical, moral and medico-legal terms.19-21 To be sure, medicine is wrought with uncertainties and, as Sissela Bok has noted, physicians’ reluctance to communicate uncertainties22 may reflect a need to portray clinical confidence and/or avoid further denigrating a patient’s condition by incurring some form of “self-fulfilling prophecy” arising from a grave or uncertain prognosis.23 But we believe that this may, in fact, be contrary to the moral obligation(s) intrinsic to the physician’s stewardship of knowledge. As Bok has emphasized, the determination of what and how information is provided to patients requires a process of “reasoned discourse,” given that “…lies place [patients] in a position where they no longer participate in choices concerning their own health, including the choice of whether to be a “patient” in the first place.”24

Here again, we see the need for some form or level of inter-subjectivity, particularly as relates to the experience of pain and expectations for pain relief. Knowing how much, what type, and how information to provide a particular patient relies upon insight to the patient’s capacity to understand, process, and engage such information. Of course, Bok recognizes that “…some patients cannot understand, some do not want…knowledge of their condition,” but to be less than truthful in such cases—while perhaps in the patient’s best interest(s)—requires that the “…burden of truth must shift…to show why a patient may be harmed, or cannot cope with truthful knowledge.”25 In order to uphold the “good” of medicine, the patient’s capacity to make choices about receiving both information and care must be respected.26,27 Given the asymmetrical nature of the medical relationship, the responsibility rests upon the clinician to determine 1) what the patient requires, and 2) that the patient can understand information and interpret this knowledge as contextual to his/her life world, values, and goals, to consent to not simply receive, but to participate in the subsequent therapeutic steps of the clinical encounter.

Autonomy And Agency

This sustains respect for patient autonomy at the most basic level, as the negative right of refusal (of both information regarding diagnosis, prognosis, etc., and aspects of care). Such refusal is explicitly derived from the capacity for self-determination. This does not infer that patients must be free of any and all forces that could influence their decision-making. To the contrary, the notion of autonomy defines how a person is capable of acting—that is, that they are able to execute particular choices in response to various influences upon their options, values, and intents. Obviously, such determination must be free from manipulation and coercion, so as to sustain agency—i.e., the ability (and recognition) of having desires and intentions, and being able to act upon these.

In this way, the concept of truth-telling plays an important role for it facilitates communication of the circumstance(s), values and expectations of the agents involved and allows independent, self-determined action. However, as Bruce Miller has related, often “…the …autonomy of individual patients is in tension with the healthcare professionals’ obligation to benefit patients.”28 In this way, it is important that patient autonomy not trump that of the clinician. Daniel Callahan,29 David Thomasma,30 and Edmund Pellegrino31 have all contested the primacy of autonomy in shaping medical decisions and action. These authors note the importance of respect for patient autonomy, but are keen to point out that it cannot serve as the sole ethical precept and must be engaged in the larger picture of the clinician’s moral and therapeutic role and responsibilities to provide right and good care.

Thus, respect for the patient-as-person 1) dictates at least some level of inter-subjectivity, so as to apprehend the first-person dimensions of the person’s patienthood; 2) provides a basis for determining the scope and nature of information provided; 3) affords a ground upon which to base particular therapeutic options, and 4) can contribute to shaping the clinician’s role in clinical care. In these regards, we opine that the clinician can assume one—or a combination—of three possible stances: 1) solely posing the options (for providing information and care); 2) posing the options with some opinion about what each may incur or mean (both to the clinical trajectory, and to the patient), and 3) posing the options with varying degrees of suggested emphasis—based both upon the patient’s value(s) of the clinician’s viewpoint(s) and guidance, and the clinician’s values regarding viable treatments. Thus, while there is an obligation to respect the patient’s autonomy, the actual focus is upon the interactive agency of clinician and patient. As Niel Rosen has claimed, perhaps the therapeutic and moral agency of the clinician is, as matter of fact, to restore agentic capability to the patient. Given the definition of agency as active power, instrumentality, and/or a “doer,”32 then it is crucial to ask what needs (and is desired) to be done. For the clinician, it is the rendering of technically right and ethically sound care. However, the beneficent provision of such care (as an individual good) is only valid upon consideration and regard for the patient’s values, goals, and meanings.

There will be times when such values and goals may not be aligned with the clinician’s evaluation of the capacity of treatment to restore all of those dimensions that have been purloined by pain. At such times, the clinician bears the mantle of responsibility to inform the patient of what is possible and not possible, and discursively work to develop and implement care that will meaningfully sustain the patient’s agentic capacity. Without doubt, this differs for each patient, as does the process of evaluation and provision of information. These are iterative and reflect changes in the objective effects of pain and various treatments, and the subjective valuation and experience of the patient as the recipient of such care. Thus, assessment is fundamental: not as a single event that occurs to establish an initial diagnosis, but as an ongoing practice that strives to “see into” the intersection of pain as an objective, neurological event, and its impact upon the subjective experience, existence, and expectations of the person in pain.

Last updated on: February 21, 2011
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