Healthy Skepticism Library item: 11654

Warning: This library includes all items relevant to health product marketing that we are aware of regardless of quality. Often we do not agree with all or part of the contents.

Publication type: Journal Article

Kukla R.
How Do Patients Know?
Hastings Cent Rep. 2007 Sep 26; 37:(5):27-35
http://www.medscape.com/viewarticle/563286_1

Abstract:

The way patients make health care decisions is much more complicated than is often recognized. Patient autonomy allows both that patients will sometimes defer to clinicians and that they should sometimes be active inquirers, ready to question their clinicians and do some independent research. At the same time, patients’ active inquiry requires clinicians’ support.

Full text:

Introduction
Bioethicists typically understand patient autonomy as having an explicit epistemic component: they equate patient autonomy with informed free choice in the management of one’s own health care. According to a traditional picture, the epistemic component of patient autonomy is a necessary condition for autonomy, but no more than that: patients cannot choose autonomously unless they are well informed, but they can exercise their autonomy only through the act of choosing once they are already informed. In their classic work on informed consent, Ruth Faden and Tom Beauchamp claim, “So long as the understanding is substantial, it makes no difference whether this understanding is self-taught, reflects prior experiences and history, is derived from a videotape, or finds its inspiration in divine reflection.“1 However, this essay argues that laypeople’s practices of inquiry and information collection play a more integral and complex role in autonomy than this. In order to understand the relationship between autonomy and knowledge in the domain of health care, we need to see how laypeople’s autonomy can be enhanced or compromised in the course of their attempts to collect, understand, and reason about medical information.2

Patients as Active Inquirers
We have recently witnessed a radical proliferation of sources of medical information for laypeople, as well as a major transformation in the methods available for gathering and assessing it. Most of us in developed countries now have easy access round-the-clock to health programming on television,3 a huge selection of health magazines and guidebooks, and, most importantly, a vast array of medical and health resources on the Internet. These resources include sites produced by professional health associations; online, peer-reviewed journals; commercial sites; sites produced by advocacy groups, both radical and mainstream; and layperson-run, participatory sites like message boards and chat rooms. We are also bombarded by advertisements from pharmaceutical companies, messages from advocacy groups, medical stories in the media, and public health campaigns. The sources of medical information available to laypeople are not hierarchically ordered or centrally organized and packaged for consumption. Rather, the information available to us forms an organic, multilayered array through which we must negotiate a path. This space of information is complicated, unregulated, and fraught with the potential for deception and conflicts of interest. We rarely, if ever, encounter “pure” information uninflected by voice and cultural context, and the skills we need to read, interpret, and assess all the information available to us are sophisticated indeed.

The impact of these changed opportunities on laypeople’s actual practice of medical inquiry has been profound. By 2005, over two-thirds of North American adults were regular Internet users,4 and 80 percent of users sought health information online.5 Seeking online health information is the single most popular use of the Internet after e-mail.6 Researchers with the Pew Internet and American Life Project have found that on an average day, more Americans look for health information online than see a doctor,7 and those with limited access to the traditional health care system are particularly likely to use online sources in lieu of doctors. Most North Americans have managed to develop a level of skill in searching and sorting for relevance and reliability that was unimaginable a few years ago. Aided by staggering advances in search engine technology, average users now navigate with reasonable competence through millions of search hits on any given health topic.8 We are adept at using sources like WebMD.com, which combines advertisements, interactive tools, indexes of health topics, news stories, and more in a single, highly complex interface that we would have found visually incomprehensible ten years ago. At the same time, of course, we can be misled in our inquiries by distorted information, the idiosyncratic “received wisdom” of an online community, or simply the overwhelming quantity of information available to us.

These changes in laypeople’s practices have gone hand in hand with changes in cultural expectations surrounding patients’ responsibilities for informing themselves. In the West at least, private individuals now live under a cultural imperative to seek out and consume health information, and indeed sites like WebMD.com refer to their lay users as “consumers,” not patients. Online calculators, journals, polls, “ask the expert” chats, and bulletin boards invite laypeople’s active participation in the quest for medical knowledge. Practices of self-informing are represented as part of responsible health care management essential to the expression of personal agency. For instance, the homepage for www.diabetes.com announces, “You are stronger than diabetes. Find tools and information you need to control your diabetes.” Laypeople’s knowledge is thereby granted the power to control disease. Users of health-related bulletin boards describe themselves as empowered by their ability to access health information without being dependent upon their doctors.9

Online health forums such as message boards, which are participatory and mostly nonhierarchical, are often used to supplement the traditional clinical encounter with advice, emotional support, confirmation of information received in the clinic, and help with decision-making. They can also serve as sites for collaborative knowledge-making practices that would not occur during a clinical visit. For instance, on one bulletin board for women struggling with infertility, users sometimes post digital photos of ambiguous ovulation and pregnancy test results that are then collectively interpreted.10

These forums can also develop into sites of resistance to medical authority. Sometimes they just allow users with quirky views to find agreement and approval. In cases where access to a medical intervention is in high demand and medical professionals function as “gatekeepers” who control access to the intervention, online communities often share medical knowledge for the express purpose of strategically subverting professional medical expertise. Transgender communities were quick to begin using the Internet for sharing detailed knowledge about how to offer doctors the right self-descriptions in order to obtain an official clinical diagnosis of gender dysmorphia, along with the access to medical interventions that such a diagnosis affords. Recently other groups-including obese people seeking bariatric surgery and pregnant women seeking relatively obscure prenatal tests like the Fluorescence In Situ Hybridization (or FISH) test for aneuploidy-have adopted this communal strategy.

In bioethical discourse, patients are generally portrayed as passively receiving expert medical knowledge in the clinic. Bioethics literature depicts “informing the patient” as something that clinicians do to patients and assumes that patients accept their doctors as authoritative experts, with the exception of notorious “fringe” cases like Jehovah’s Witnesses and oppressed groups scarred by deep distrust of the medical establishment. Accordingly, bioethicists have focused on how clinicians can get patients to understand the information they are giving them so that the patient can make an informed choice. There has been vastly less bioethical concern with whether and when patients will accept this information as authoritative, even if they understand it perfectly.

Yet we have seen that contemporary North American laypeople often enter the clinic as active inquirers who have already consumed a great deal of medical information and employed a variety of skills and strategies in the course of their investigations, including often imperfect skills at judging which information they can trust and how it is marked by private interests, ideology, and ignorance. The space of medical information that now surrounds laypeople requires active negotiation, not just passive reception. Furthermore, given how fast medical knowledge changes and grows, to expect any but the most specialized doctor to have current and exhaustive knowledge in all the domains in which she may be called upon to give care and advice is unrealistic. Often, a layperson’s independent research can give her information about a particular narrow topic that is more comprehensive and up to date than that possessed by her doctor. For these reasons, we should not expect patients to function as passive recipients of medical information, nor to hear their physician as speaking in a unilateral voice of unassailable authority. Given the active picture of laypeople’s practices of inquiry that we now have on the table, we can ask what it means for these practices to display-or fail to display-autonomy in their own right, and what role they play in patient autonomy more generally.

Trust, Expertise, and Autonomous Inquiry
Social epistemologist Alvin Goldman points out that philosophy typically presumes agents with “unlimited logical competence and no significant limits on their investigational resources.“11 Richard Moran adds that we have inherited from classical empiricism a “picture of genuine knowledge basing itself either on direct experience of the facts or on working conclusions out for oneself.“12 Together, these viewpoints give us an understanding of the inquirer as someone who uses his own sense organs and reason to figure out the facts without help or error.

In fact, however, laypeople do not generally try to function as self-sufficient knowers when it comes to health and medicine. Rather, the skills and strategies they exercise in inquiry involve accessing, assessing, and balancing competing knowledge claims. They look to various kinds of experts to help form beliefs, set goals, develop preferences, and make choices.

Responsibility and competence in inquiry require that we intelligently delegate authority and defer to experts. John Hardwig points out that “because the layman is the epistemic inferior of the expert (in matters in which the expert is expert), rationality sometimes consists in refusing to think for oneself.“13 If we were to insist upon functioning as self-sufficient knowers, he claims, we “would succeed only in holding relatively uninformed, unreliable, crude, untested, and therefore irrational beliefs.“14 Furthermore, we have to trust and depend on others not just as authorities, but as collaborators in our inquiries. The collaborative character of knowledge is explicit in the domain of scientific research, where articles and grants almost inevitably involve multiple investigators. But everyday practices of inquiry more often informally mimic such collaborative enterprises than they do Descartes’ independent reflections in his stove-heated room.

We could insist, as a matter of stipulation, that autonomous inquirers are those with the capacity to successfully engage in self-sufficient, independent inquiry. However, from what we have seen so far, such self-sufficiency seems neither the norm nor the ideal in most inquiry. Feminist philosophers have criticized our traditional understanding of autonomy as unencumbered independence and have argued instead for an account that takes our interpersonal relations of dependence, responsibility, and collaboration as conditions of autonomy, rather than compromises of it.15 Similarly, we need a relational understanding of autonomous inquiry.

I believe that our massive dependence on the expertise, trustworthiness, and collaboration of others in our inquiries is not only unavoidable, but rational.16 I propose that we understand autonomous inquiry as skilled and competent coping in the course of our investigational practices-our attempts to discern, know, predict, and make appropriate guesses and decisions, for example. Such competent coping is manifested not only in gathering data and in inference, but in various material and social skills, including strategies for finding relevant information, skills at assessing the authority of various sources, and the ability to participate appropriately in the epistemic division of labor, to name a few. In order to be a skilled, competent inquirer, a person must be able to find the information she needs, assess its reliability, revise her beliefs appropriately in response to new evidence, and take responsibility for her own knowledge and judgments. On the other hand, she need not be the self-sufficient source of all of her knowledge; indeed, depending on others appropriately is an essential component of skilled, competent inquiry.17

One important consequence of this account so far is that the capacity for autonomous inquiry does not inhere in isolated individuals, but instead depends in part upon our social, institutional, and material position. This will sound surprising to most epistemologists, but it fits nicely with the common bioethical intuition that other people-such as clinicians and genetic counselors-have an active and ethically important role to play in fostering autonomy. When those around us are trustworthy and helpful, when we have good access to information, and when we have the support we need to help us exercise good judgment, then we are better able to cope competently and responsibly as inquirers.

Widespread cultural representations can position people in ways that compromise (or, conversely, enhance) their capacity for autonomous inquiry. Consider the following quotation from the omnipresent monster bestseller, What to Expect When You’re Expecting: “Every bite counts: Before you close your mouth on a forkful of food, consider, ‘Is this the best bite I can give my baby?’ If it will benefit your baby, chew away. If it’ll only benefit your sweet tooth or appease your appetite, put your fork down.“18 This attitude towards consumption during pregnancy is widely disseminated and enforced. It threatens to undermine pregnant women’s competence as inquirers and knowers in two ways. First, even though it does not strictly speaking misinform, it demands a completely inappropriate level of vigilance, encourages distorted risk judgments, and uses guilt and shame to link an unreasonable epistemic practice with good motherhood. Second, like many other cultural messages surrounding pregnancy, it calls for a peculiar erasure of maternal subjectivity. Notice that there are three possible subjects of need in this passage: the baby, the sweet tooth, and the appetite, and none of these are the mother. Only a self with needs and desires can engage in practical deliberation on her own behalf, so cultural messages that call for such self-erasure undercut our deliberative capacities.19

The capacity for autonomous inquiry, as it has been described here, is not a capacity for liberty or independence, but for competence and responsibility: it is a component of our positive freedom to act on our intentions and to own our actions, rather than our negative freedom to act without constraint or help from others. In the health care domain, patients’ ability to inquire competently and responsibly-to form beliefs about their medical options and situation and to deliberate effectively about their choices-bears directly upon the autonomy of whatever choices they make as a result of this process. Regardless of how free and uncoerced a patient’s eventual choice of a medical path might be, we cannot “measure” the autonomy of this choice without attending to whether it resulted from a competent, responsible process of inquiry-that is, whether the patient manifested autonomy not only during the moment of choice itself, but also in the epistemological process that led up to that moment.

Some Components of Autonomous Inquiry
We can identify a number of interlocking conditions that contribute to laypeople’s capacity for autonomous inquiry in the domain of health and medicine. These conditions involve a complicated combination of inherent and learned abilities, interpersonal relationships, and material, social, and cultural situations. This list is not intended to be either systematic or exhaustive, but merely illustrative.

Competent inquiry requires basic health literacy and statistical literacy. A 2004 report by the Institute of Medicine20 showed that half of all American adults did not have enough health literacy to follow doctors’ and pharmacists’ orders. All of us are notoriously terrible at understanding and reasoning about risk. Whether we are sufficiently “literate” to comprehend a particular piece of information depends not just on our cognitive skills and education, but also on how the information is packaged and presented. Bioethicists have focused extensively upon the importance of this epistemic skill.

We cannot understand information unless we can access it, but not all of us have equal access to information. We differ not only in our access to health care professionals, but also-at least as importantly in 2007-in our access to the Internet, our access to scholarly journals, and our skills at finding relevant information. While differential access to information is a social inequality with clear ethical consequences, bioethicists have presumed that the clinical encounter is the privileged site for information dissemination and have therefore had little to say about the consequences of such access inequalities outside of the clinic. At the same time, in some domains of health care, we might worry about having too much access to information-we can be overwhelmed and paralyzed by a bombardment of information, particularly when we feel responsible for consuming this information and disciplining our bodies accordingly. Reproduction and weight control are two domains that leap to mind.21

Given our access to multiple, conflicting sources of information-many of which are unregulated and interest-driven-competent vernacular inquiry requires more than comprehension: it calls for skills and strategies for judging the trustworthiness of a source and adjudicating between competing claims. Indeed, studies show that Internet users exhibit well-developed and complex strategies for sorting through health information and judging its legitimacy. For example, women who seek pediatric health information on the Web trust different kinds of sources on different topics. They are dismissive of recognizably industry-sponsored sites and have developed strategies for adjudicating between conflicting sources of information, such as looking for frequently repeated information that cannot be traced back to a common source.22

Since most inquiry and knowledge-building is collaborative and sustained by trust, those with the capacity to form and maintain strong relationships of trust and collaboration will be more competent inquirers. This capacity is partly a product of our social skills and personalities, but it is also a product of our social positions and opportunities. If patients from racial and linguistic minorities are labeled as stupid or untrustworthy by their health care providers, this undermines their opportunity to build such relationships. When women’s reports of their own symptoms are dismissed as psychosomatic, exaggerated, or attention-seeking, they cannot trust those who dismiss them to provide them with relevant guidance. In general, when others doubt our competence as inquirers and knowers, they cannot serve as trustworthy collaborators in our quest for understanding.

We cannot make high-quality, informed decisions about our own health care unless we have access to an expert who can provide a synthetic assessment of our particular medical situations. However, even financially secure North Americans face a health care system that is increasingly fractured by specialization, discontinuity of caregivers, and elaborate divisions of labor among health professionals. Hence there may be no one person who is in a position to make a judgment about a patient as a whole. In one case brought before a hospital ethics board, a physician whose newborn daughter had multiple health problems was asked by the hospital to decide whether to terminate life-sustaining treatment. He did not feel that he could make an informed decision because although he had detailed information about the prognosis of her kidneys from her nephrologist, and of her heart from her cardiologist, and so forth, no one was able to tell him what kind of prospects she had as a whole person. An understanding of someone’s medical status cannot be derived from the sum of the status of different body parts. Despite his own health literacy, the father’s agency as an inquirer was compromised by the structure of the hospital, and in turn his epistemic difficulties undermined his ability to make a responsible and confident choice. Women routinely face such a fracturing of the body on a smaller scale, in that their primary care is split between doctors specializing in their reproductively relevant body parts and doctors specializing in the rest of their bodies. The emergence of “fetal medicine” as a distinct specialty creates a further fracture in women’s bodies as objects of medical care and attention.

Autonomous inquiry depends upon the capacity to critically interrogate the legitimacy of the information and advice we are given by others, including by experts. But when a medical intervention is represented to patients as routine, a patient will rarely question the reasons for the intervention. Indeed, acquiescing to a “routine” procedure can easily feel like the only responsible thing to do. It may be no important compromise of our autonomy that we are not encouraged to critically interrogate our children’s routine vaccination schedule. However, recent medical history is littered with examples of procedures-from hormone replacement therapy to episiotomies to various screening tests-that became routine for serendipitous reasons but were ultimately proven to be overused at best, and seriously damaging at worst. Arguably, hardly any interventions ought to be presented to healthy laypeople as simply routine, for such a presentation inherently discourages critical interrogation. On the other hand, it might well be appropriate to present a given intervention as strongly recommended, or even-in cases where public health is at stake-compulsory. There is an important difference between describing a procedure as strongly recommended and describing it as routine-the first description invites a conversation about the reasons for the recommendation, whereas the second discourages such conversation.23

The Fact-Value Division of Labor
We have seen that patients’ acquisition of medical knowledge is a collaborative enterprise involving laypeople’s active participation and a complicated role for experts. However, according to one prevalent bioethical model of the physician-patient relationship, the division of knowledge labor in the medical domain is actually quite clean. In their classic article, “Four Models of the Physician-Patient Relationship,” Emmanuel and Emmanuel argued that according to a dominant picture, medical decision-making is based on a “fact-value division of labor” in which doctors provide the medical “facts” while patients are the authorities on their own “values,” and decisions are based on an application of the patient’s “values” to the doctor’s “facts.“24 On such a model, decision-making is collaborative, but there are only two collaborators, and each has a well-defined domain and contribution: the doctor is the authority on the facts, and the patient is the authoritative judge of how to attach values to those facts. Carolyn McLeod suggests her commitment to a version of this picture in her recent response of an article of mine: “Patients defer to the technical and experiential knowledge of the physician. But . . . if what patients rely on when deferring to providers is not technical knowledge or experience, but moral values, then their deference does not promote autonomy. . . . Whatever lures them into deferring to health providers on moral matters is likely misguided. Providers are in general no better placed to make good judgments about moral choices than patients are.“25

Now we have already seen that accepting doctors’ univocal authority on the facts is inappropriate. And it seems highly naïve to assume that patients are always authoritative experts on their own values and preferences. But here are three quick arguments for the stronger claim that moral and factual expertise are not as neatly separable as this model presupposes:

Medicine is not a value-neutral science. Medicine’s goals are normative through and through. It seeks to promote health and to cure and prevent illness. Despite many attempts to give statistical or naturalized definitions of health and illness, they remain irreducibly normative notions, as do the concepts of risk and benefit. When clinicians become experts in the practice of medicine, they become more than repositories of facts and technical skills-they become experts at a set of activities that can only be described as governed and constituted by particular values and ends: the badness of pain, a picture of human flourishing and wellness, the nature of dignity, and more. One cannot exercise clinical judgment without exercising various kinds of value judgments; likewise, becoming an expert at practicing clinical medicine involves becoming an expert at making such judgments. There is, then, no extractable core of value-neutral knowledge that forms the essence of the clinician’s skilled expertise.

Clinicians may be better placed to make good moral judgments. Contrary to McLeod’s belief, there is reason to expect good clinicians to have special capacities for moral insight and wisdom when it comes to their own area of specialization, so they may in fact have some specialized moral expertise, even though they of course cannot claim any generalized moral authority. Many contemporary medical choices-whether to pursue fertility treatment, whether to take an aggressive or a conservative approach to advanced cancer, or whether to donate an organ to a family member, for example-do not wear all of their moral and social complexities on their sleeve. Clinicians have lots of opportunities to think through the moral complexities of the procedures and options that make up their daily practices, whereas patients are likely confronting these complexities for the first time. If we accept that moral discernment and judgment must be honed through experience,26 then we have good reason to think a clinician will be in a better position to see clearly the moral contours of a patient’s situation than she is, and likewise that a clinician may serve as a trustworthy guide in some matters of moral judgment.

Storytelling can convey valuable knowledge. Shared storytelling among laypeople-of the sort that happens so easily and with such volume online-can impart valuable narrative and emotional knowledge of the repercussions of various medical possibilities and situations. It can give us an understanding of the real practical and emotional impact of living with a particular disability, or of undergoing certain procedures-fertility treatments or chemotherapy, for instance. A physician cannot provide such understanding during a clinical encounter no matter how hard she tries because this is not the kind of understanding that she gains from clinical experience-she is an outsider whose contact with her patients’ lives is sporadic and mediated by a specific professional relationship. But such narrative and emotional knowledge is often crucial to high-quality, practical deliberation and decision-making. This is a form of expertise that cannot be neatly categorized as either “factual” knowledge or knowledge of “values,” but it is certainly a kind of medical knowledge that is highly relevant for patients.

Hence the fact-value distinction does not track a distinction between the forms of expertise that are relevant to high-quality decision-making in medicine; likewise, there is no clean fact-value division of labor in medicine. The texture of laypeople’s medical knowledge is rich and complex, as are the roles that trust, deference, and collaboration play in supporting our autonomy during our inquiries.

The Role of the Clinical Encounter
The basic structure of the clinical encounter has not changed to accommodate our new knowledge practices. This structure involves the clinician’s delivery of information to a patient who is assumed to be a passive vessel, followed by an opportunity for the patient to ask questions that clarify what he just learned. At this point, we have reason to think that clinicians are not clamoring to change this format; 84 percent of clinicians rate their patients fair to poor at appraising the quality of the information they find on the Web, and almost three times as many clinicians believe that patients’ independent research hampers the efficiency of clinical visits than believe that this research improves efficiency.27 Against this background, patients who probe their clinicians’ reasons for their beliefs or ask them to respond to rival studies or schools of thought can appear challenging or aggressive. Within the confines of a traditional clinical encounter, the behavior of patients who attempt to exercise agency as independent inquirers can appear pathological. Of course, the idea that patients who seem to challenge medical authority may be labeled as problematic and even penalized is nothing new.28 However, the more specific point here is that patients who try to function within the clinical encounter as competent, skilled inquirers-rather than as passive recipients of information-may ironically appear to be manifesting dysfunctionality or incompetence.

To take a dramatic example, consider Munchausen Syndrome By Proxy (MSBP), a psychiatric disorder recognized by DSM-IV.29 MSBP sufferers either fabricate obscure physical symptoms for their children or intentionally inflict physical damage on them to get attention from medical professionals. A series of exposés over the past few years has shown that MSBP is overdiagnosed and sometimes used as a clinical weapon against “pushy” mothers. A 2004 New Yorker article on this phenomenon pointed out that independently researching possible diagnoses, failing to accept physicians’ diagnoses and treatment suggestions, and putting forth one’s own hypotheses are all among the typical diagnostic criteria for MSBP.30 Partly because of their increased opportunities for independent research, well-educated mothers whose children have rare, hard-to-diagnose diseases are now disproportionately diagnosed with MSBP. In the case of one Ottawa mother who fought a diagnosis of MSBP in 2002, her proper use of medical jargon was counted as evidence of her “unhealthy” interest in her child’s condition.31 Hence MSBP is not merely one more in our litany of diagnoses-along with hysteria, hypochondria, and chronic fatigue syndrome-that effectively discredit some women’s clinical testimony and pathologize their attempts to get medical help32-although it is that, too. Rather, it specifically feeds off contemporary changes in laypeople’s knowledge practices and competencies and their mismatch with the institutionalized structure of the clinical encounter.

Respect for patient autonomy requires supporting patients’ autonomous inquiries. The relativist view that everyone’s knowledge practices are equal, and that “authoritative” knowledge is always bad because it devalues “other ways of knowing,“33 is a poor route to promoting responsible, competent inquiry. Good medical decision-making requires the judgment and skilled expertise of practiced clinicians. But at the same time, clinical practices should reflect an expectation that patients may be active inquirers who bring relevant expertise and a healthy critical distance from the authority of their physicians’ voice into the clinic with them. Clinicians should respect and recognize their patients’ capacity for autonomous inquiry and give these patients reasons to trust their expertise when appropriate, rather than assuming that their voices will be heard as unilateral and immediately authoritative. Correspondingly, clinicians should be aware of the extent to which patients may have already had their understanding distorted by misleading, socially available information.34 This requires some restructuring of the clinical encounter and its institutionalized roles.

To this end, clinicians could routinely begin appointments by asking patients not only what their symptoms are, but also what they have found out so far about those symptoms, and whether they have run across any confusing or conflicting information. That is, they could begin the clinical encounter with the recognition that patients may already be active inquirers. They could also suggest productive independent research strategies and good sources for patients and warn them away from misleading or illegitimate sources in order to help them increase their investigational skills and judgment. Finally, clinicians can acknowledge that patients hear their voices within the context of a larger medical discourse. Consider a patient who has heard from her online community that side effect X is a risk with treatment P. Her clinician, however, believes that X is not a real risk with this treatment. If her clinician merely informs her that X is not a risk with treatment P, she does not develop any tools with which to adjudicate between the authority of her doctor and her peers. If, instead, her clinician tells her that he believes X is not a substantial risk with treatment P based on his long experience prescribing P and a workshop he did on P last summer, and that the few studies suggesting a risk of X are unconvincing in his opinion because of their small size and retrospective methodology, then he accomplishes several things. He gives the patient tools to situate and assess the authority of his voice; he demonstrates respect for her capacities as an autonomous inquirer; and he helps to teach her, by example, how to reason well about statistics and study designs, thereby fostering an important form of competence. Of course, doctors are always woefully short on time and rightly suspicious of bioethicists’ attempts to tell them about all the extra things they should be doing. However, the suggestion here is not to add an extended conversation to the clinical encounter, but rather to shift the structure of the clinical visit so as to embed different expectations about patients’ roles and needs as knowers, even if each part of this conversation is usually brief.

The domain of medicine is distinctive in that an essential relationship between knowledge and autonomy, along with a set of epistemic duties that experts have toward laypeople, are already recognized in medical theory and practice. We have legal and professional norms in place designed to ensure that health professionals play an appropriate role in providing patients with the informational resources they need to be autonomous managers of their own health care. As laypeople’s practices of medical inquiry and information collection change, we must ask how we can institutionalize norms that will adequately reflect the real character of patients’ needs and abilities as active inquirers. The goal of this essay is not to either romantically valorize or to demean laypeople’s medical knowledge and practices of inquiry. Nor is it to either augment or undermine the importance we attach to clinicians’ expertise and their guiding role in patient decision-making. While I have warned that clinicians should not expect their patients to hear them as unilateral and automatically authoritative sources of information, I have also argued that clinicians have moral as well as technical expertise to offer their patients, and a crucial role to play in enabling their patients to function as autonomous knowers and choosers. The increasingly active role that laypeople are taking-and indeed, are asked by our culture to take-as medical inquirers and as participants in collaborative knowledge-building is riddled with both empowering possibilities and the danger for distortion and peer pressure. This essay offers no evaluation of this trend, but instead calls for sensitivity to how such changes alter the physician-patient relationship, inflect the meaning of patient autonomy, and put new pressures on the clinical encounter that may call for some changes to its structure.