What Gauge Needle Do You Like For Your Arthrocentesis? Expert Patients, Paternalism, and the Politics of Clinical Knowledge

Why do medical practitioners only very rarely ask patients about their desires in regard to the specific clinical details of treatment, and what does this have to do with the relationships of knowledge, legitimate medical authority, and medical paternalism?  It is my contention that knowledge, both on the part of the patient and of the practitioner, is a central part of where lines between “paternalistic” and “legitimate” imposition of medical authority are drawn.  The politics of knowledge, and their connections to issues like competency, oppression, status, and power, have an important but underexplored role in the discussion on paternalism.  Considering the question of what thresholds medical practitioners expect to encounter when it comes to patients’ clinical knowledge provides us with a useful window into this issue.

For the purposes of this discussion I will first recognize that the definition of “paternalism” is contested, but also assume based on the historical evidence presented by the history of medicine as practiced in the US on the enslaved, women, children, LGBTQ individuals, African-Americans, and other politically and economically disenfranchised groups that Daniel Groll is correct in asserting that paternalism is not limited to cases in which one person exerts authority in order to act against the will of another.[1] History shows that this “acting against” is not required for paternalism to take place.[2]  Rather I concur with Groff that person X acts paternalistically toward person Y when, for the sake of what X perceives to be Y’s good, X does not take Y’s will or desires into consideration or decides against those desires.[3]

In examining the role of knowledge in determining where this line of consideration of Y’s wishes – Y in this case being the patient, X being the medical provider – I feel that it is instructive to look at the nature of informed consent as it is currently construed, and specifically, at the point(s) in the process of medical interactions consent is sought.  The mundane reality is that despite our culture’s current foregrounding of informed consent, countless treatment decisions are routinely made by providers not only without considering patient desires but in fact without any patient input whatever.  This authority is exerted on the basis of practitioners’ presumptions about the limits, whether actual or assumed or merely desired, of patients’ knowledge.  Patients and practitioners alike, however, become aware of these presumptions about the limits of patients’ knowledge when the presumed knowledge boundary is breached.   When this happens, it declares the existence of a real but typically unarticulated divide between a realm in which decisions where the imposition of medical authority in decision-making is presumed unproblematic and by definition uncompromised by potential paternalism, and a realm in which greater patient knowledge renders the imposition of practitioner authority a more complicated matter.

This is a separate problem in many ways from the problem of informed consent.  Patients are usually involved in decisions about whether treatment will happen, and in a large-picture way about the kind of treatment that will be pursued.  Because these are the customary realms in which informed consent is sought, these are also the customary realm in which patient knowledge is encouraged and provided. A patient with a potentially infected knee replacement might, for example, be asked whether she will consent to having the synovial fluid in the knee tapped and cultured, or whether she is content to simply begin a course of antibiotics and see whether the condition improves.  Regardless of which path the patient chooses, however, the clinical particulars will not be up to her.  Aside from checking her chart for possible allergies, she will not be asked her opinions on the type or dosage of drugs she might be prescribed.  Nor, if she agrees to the arthrocentesis, will she be asked what gauge of needle she prefers for the aspiration.  Why not?  Because her knowledge and expertise on these matters is presumed to be limited or nonexistent.  That is the doctor’s bailiwick.  The tacit assumption is that there are aspects of medical care about which it is at least appropriate and possibly desirable that the patient have no opinion, with the result that the practitioner will have few to no barriers to imposing what they perceive to be an appropriate choice.

But some patients do have (and express) knowledgeable opinions about such issues.  The patient with the knee problem might be a practicing nurse, or might be on her second knee replacement, or both, and have well-informed reasons for preferring one needle gauge over another for arthrocentesis on her own knee. Such high-knowledge patients, sometimes called “expert patients,” are virtually absent from the literature on doctor-patient communication, which tends to focus on patient information-seeking and the relationship of effective provider communications to patient compliance.  Despite this lack of representation in the literature, some patients do become very well educated about their needs and preferences through extensive patient experience, clinical education programs, or self-directed research.  Inevitably, some patients are themselves medical professionals.  Some patients, like the friend whose knee and expertise I have metaphorically borrowed to illustrate this essay, are both medical professionals and patients with extensive personal experience of their medical condition(s) and past clinical interventions.

The limited body of research on high-knowledge patients confirms anecdotal reports that the “expert patient” upsets the presumed hierarchies of knowledge and authority in clinical settings, with adverse results to the patient and their quality of care.  The answer to the question asked in the title of a BMJ Open study, “What happens when patients know more than their doctors?” appears to be not only social awkwardness, but the labeling of the “expert patient” as “noncompliant,” and sometimes to suboptimal or even dangerous outcomes including unnecessary hospitalizations and sudden changes to treatment regimens as medical practitioners seek to (re)establish what they feel is their rightful authority over the clinical situation.[4]

There is, in short, an underdetermined but provably extant point at which it is presumed that patients will lack the knowledge to participate in medical interventions, allowing provider authority to take over, and this is perceived as appropriate and proper to the medical environment. When such a customary imposition of authority is made in regard to a patient whose knowledge exceeds the presumed norm, however, it may well be a paternalist move in actuality.  A practitioner’s right to impose decisions is typically presumed in technical clinical contexts on the basis of the practitioner’s presumed superior knowledge.  The oft-cited “reasonable patient standard” appears, in other words, to encompass a “reasonable” expectation of patient ignorance:  a “reasonable patient” may know enough to consent to treatment and yet possess no knowledge specific enough to have formed desires about many aspects of that treatment.  Customarily, practitioners are not obligated to ensure that patients acquire that level of knowledge or even to ask if the patient wishes to do so.

Thus, although it is customary to acknowledge “competence” as a baseline for a patient’s participation in medical decision-making, this primarily means competence to understand information one is given and to make decisions based on that information.  But knowledge is literally power in contexts such as medicine wherein power is derived from expertise.   Competence to receive and understand a limited subset of medical information is not – and cannot be permitted to masquerade as – the only knowledge dynamic in the examining room. When a patient’s lack of knowledge is to be remedied by the practitioner, the informing of a patient’s consent is necessarily one means by which practitioners may routinely retain and enhance authority.  If the potential for abuse of authority is what concerns us about paternalism, then we must be concerned about this.  But we must also be concerned, perhaps especially so, about what happens when a high-knowledge patient challenges the boundaries around territory that has been customarily the practitioner’s own.

This is particularly relevant given the multiple ways in which the politics of knowledge intersect with the politics of sociocultural, economic, and legislative enfranchisement and disenfranchisement.  Suffice to say that the politics of knowledge at once undergird and reproduce the basis on which the desires, experiences, and knowledge of marginalized groups are routinely discounted, dismissed, and overridden: it is easier to behave paternalistically (and more probable that such paternalism will be overlooked) toward members of groups perceived as less likely to be competent, knowledgeable, or both. As a bellwether for the potential of problematic paternalism amongst medical practitioners, then, it may be that a practitioner’s ability to negotiate the challenge of the high-knowledge patient can tell us more than their performance as information supplier and consent broker with patients whose competence is stipulated but whose knowledge is no greater than the presumed norm.

 

Notes:

[1] Daniel Groll, “Paternalism, Respect, and the Will,” Ethics 122, no. 4 (July 2012): 695.

[2] For discussions of medical paternalism as practiced in regard to some of the groups mentioned please see e.g.: John C. Fout, ed. Forbidden History: The State, Society, and the Regulation of Sexuality in Modern Europe (Chicago: University of Chicago Press, 1992); G. Sophie Harding, ed. Surviving In The Hour of Darkness: The Health and Wellness of Women of Colour and Indigenous Women (Calgary, Alberta: University of Calgary Press, 2005); John Hoberman, Black and Blue: The Origins and Consequences of Medical Racism (Berkeley: University of California Press, 2012); Rosemary Pringle, Sex and Medicine: Gender, Power, and Authority in the Medical Profession (New York: Cambridge University Press, 1998).

[3] Groll, 694.

[4] Rosamund Snow, Charlotte Humphrey, Jane Sandall, “What Happens When Patients Know More Than Their Doctors?  Experiences of Health Interactions After Diabetes Patient Education: A Qualitative Patient-Led Study” BMJ Open 2013; 3:e003583. Accessed 15 September, 2016. doi:10.1136/bmjopen-2013- 003583.  See especially the discussion of “consequences,” pages 5-6.  Additionally, see David Badcott’s “The Expert Patient: Valid Recognition or False Hope” Medicine, Health Care, and Philosophy 8, no. 2 (2005): 173-178, in which Badcott dismisses (173) “the notion of ‘the expert patient’ as informed co-decisionmaker” as a “well-meaning but rather vacuous aspiration similar to that of informed consent.”

This post was originally written in the context of a bioethics seminar at the Emory University Center for Ethics.  My thanks to Dr. Jonathan Crane and Kathy Kinlaw for their constructive feedback.

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