Consider the impasse between the patient and the clinician in the following case:
A male radiologist is called to the emergency department (ED) to perform a transvaginal ultrasound to evaluate a possible ectopic pregnancy. The patient has come to the ED with bleeding and abdominal pain. Her beta-HCG is around 250—not yet high enough for a transabdominal ultrasound to be effective. When the radiologist arrives in the patient's room, he finds her covered in a burqa. Her husband explains that she needs to remain covered and that the male radiologist will not be allowed to perform the necessary exam. The patient says nothing. There seems to be no language barrier.
In the context of the recent movement to provide patient-centered care, cases like this one present a serious challenge to the clinical team: What the patient—or at least the person speaking for the patient—considers necessary to protect her values is in direct conflict not only with the standard of care but also with standard operating procedures in contemporary U.S. medical settings. The standard of care in a suspected ectopic pregnancy is a diagnostic vaginal ultrasound, and the standard operating procedure is that the clinician (of whichever gender) who is assigned to the case will perform the exam while the patient is wearing a hospital gown. Against the backdrop of the almost unmanageable clinical load in U.S. EDs, what type of attention and accommodation does patient-centered care demand when that effort threatens to cause significant strain in a service already stretched thin? And even if certain accommodations can be made, is the extra effort ethically warranted?
Patient-Centered Care: The New Mantra
Stakeholders in all arenas of U.S. medicine—professional organizations, public advocacy groups, hospital administration, medical school leadership, insurance carriers, and nursing—invoke “patient-centered care” as a mantra. As just one example, the American Academy of Family Physicians, the American Academy of Pediatrics, the American College of Physicians, and the American Osteopathic Association all committed to patient-centered care in their 2007 “Joint Principles of the Patient-Centered Medical Home,”1 which the American Medical Association voted to adopt in November 2008.2 There is hardly a statement issued about health care quality improvements that does not appeal to patient-centered care as the guiding principle and goal. But, as bioethicist Howard Brody3 points out in his recent critique of the field of bioethics, the movement toward patient-centered care often neglects the more fundamental questions of what patient-centered care really demands or requires. He writes, “For all the good intentions of patient-centered care and the medical home, it may be too easy to become overly focused on which electronic health record program works best, or on how to get properly reimbursed for group meetings for diabetic care and education.” Rather than focusing on such logistics, he ponders the obligations of hospitality that the idea of a medical home entails, asking, “What has to happen in a medical office so that patients feel welcomed on arrival and throughout the visit?”3 Extending this line of questioning into the inpatient setting, we need to ask what patient-centered care obligates us to do, especially if we are to make good on the Joint Principles promise that calls for care to be “culturally and linguistically appropriate.”1
Altering clinical practice so that it is welcoming and satisfying to patients in ordinary settings and situations is difficult; achieving this is all the more challenging when the needs of the patient conflict with the deeply held values and priorities of the providers. But patient-centered care cannot be reserved only for the easiest, most compliant, most mainstream patients. If patient-centered care requires attending to patients' culturally sensitive needs, we need to determine what obligations we have to meet those needs when doing so is inconvenient, challenging, or, at the extreme, offensive to clinical values.1,4–10
Cultural Differences We Already Accommodate
In certain circumstances, providers are already quite comfortable meeting religious or cultural demands, even if these demands conflict with the standard of care. Consider, for example, widespread policies that recognize and respect diverse belief systems, such as religious-based dietary accommodations and even blood transfusion policies for patients who are Jehovah's Witnesses, or “publishers” as adherents call themselves. What sets these categories of cultural or religious demands apart from the requests of the patient and her husband in the ectopic pregnancy case is that mainstream U.S. medicine does not consider them to be (1) disruptive to the workflow of the service, (2) antithetical to mainstream U.S. values and thus unsupportable, or (3) ad hominem, that is, perceived as a personal insult or affront to the provider. Let's examine each of these problems in turn to see if any of them constitutes an exclusion criterion whereby accommodating patient-centered care would exceed that which can reasonably be expected of providers and institutions.
Consider first the issue of disruption to the workflow. Care providers do not deem the accommodation of cultural or religious demands in some instances (e.g., providing [or not providing] blood transfusions or honoring dietary requests) to be detrimental to either productivity or the delivery of care. But the acceptance of these requests may be better explained by their structural incorporation into institutional and clinical practice rather than by any inherent aspect that makes them easy or convenient to honor. Early on, when such demands were novel, they probably did cause significant interruption to clinical care. Providers and institutions likely had to struggle with how and whether to meet those demands, but now they are simply included in the menu (sometimes, literally) of clinical care and patient services. Now there is a standard protocol of accommodation, so these requests are not viewed as disruptive or inconvenient. One lesson to learn, then, about our ability to meet patients' needs in cases of cultural or religious difference is that when demands are relatively novel, they may cause interruption in a way that they might not once we develop a standard method for handling them. We cannot refuse an accommodation merely because a system for accommodating that request has not yet been worked out.
Providers and institutions routinely accommodate not only requests for which there are established protocols but also those not deemed antithetical to mainstream U.S. values. Do we sanction some requests “worthy” because they are inherently reasonable and justifiable—religiously, culturally, or morally—or because we are accustomed to these categories of demands?11,12 The demands we are currently used to accommodating may not be more justifiable in any way than the demands newer immigrant or religious groups are making. Take, for instance, the case of a patient who is a Jehovah's Witness and refuses a blood transfusion. Every medical student learns about the right to refuse unwanted transfusions; in fact, this example is one of the standard clinical ethics cases medical students study during training. From the very beginning of medical school, then, clinicians understand that honoring a patient's request to forego a blood transfusion is standard and appropriate, even though the patient's choice may result in a preventable death. On the face of it, nothing seems less reasonable than losing a patient who has a very good prognosis, yet we define blood refusal in this population as a justified religious choice. “Worthy,” then, is not a matter of what can be justified on grounds of the dominant culture's values but, rather, what we have come to accept in the range of cultural or religious difference in the United States. Given the U.S. commitment to religious pluralism and tolerance, if one religious or cultural belief or value is deemed justified and worthy of respect, then they must all be.
Finally, we routinely accommodate requests if they are not ad hominem with regard to the provider; that is, if the requests do not discriminate against certain categories of providers on the basis of race, gender, sexual orientation, etc. In the United States, the dominant culture's commitment to equality and nondiscrimination makes it difficult—on principle—to accommodate a demand that whole classes of clinicians be barred from providing care. Most physicians would view a patient's refusal to be treated by a fully qualified caregiver—due simply to a particular demographic quality—as an affront to deeply cherished national values. A patient's refusal to be seen specifically by a man or a woman, by someone of a particular ethnicity or sexual orientation, feels like prejudice and discrimination; a patient demanding a specific diet or declining a certain treatment strikes no such nerve.
But this sort of demand, like that made by the patient in our clinical scenario, is precisely the kind of request that can reveal a profound cultural conflict. In just such circumstances—when one person's values are incommensurate and incompatible with another's—the questions we have about our obligations to patient-centered care become most urgent and most challenging. Keeping these three characteristics in mind, let's return to our case.
Otherness Versus Commonality
The patient in the ED adheres to an institution called Purdah, which literally means “curtain” (written in Persian and Urdu as SYMBOL and in Hindi as SYMBOL). It is the practice of preventing men from seeing women through both physical segregation and the covering of women's bodies.13 Some populations in parts of the Middle East, Pakistan, and India practice Purdah. A woman living under Purdah would likely wear a burqa, and only close male relatives and other women would see her hands, eyes, arms, neck, face, and hair. Given this history, the patient in the burqa and her husband seem to subscribe to values incommensurate with those held by mainstream Americans.14–17
Part of why incommensurable values seem to create an unbridgeable chasm between individuals is that, in such conflicts, each person is regarded as radically “other,” too different for the kind of kinship that engenders empathy and understanding. Deep cultural conflict originates with this focus on “difference,” on how “they” seem different from “us.” It is hard to overcome the impasse that disparate values generate, especially when the interpretation of radical difference stands. But if we can understand that underlying those very real cultural and religious differences is a commonality that runs deeper, the divide will no longer seem as wide. I want to argue that, indeed, a set of universal values does underpin the claims of those whose views seem entirely different from our own. If we can see that what matters to “them” also matters to “us,” then we'll realize we don't have the gaping differences we first seemed to have. If we can see commonality in our values, then we can find solutions to patient–provider conflicts that are truly patient-centered, and we will be more likely to think the effort worth our time.
Before we consider the commonalities we share with the couple in the ED, it is worth laying bare the story we might tell if we focused wholly on difference. We might make a host of assumptions that would create a divide that seems very wide indeed. We might think, for example, that because the husband is speaking for the patient, he is robbing her of her autonomy; that he is refusing necessary medical care on the basis of a parochial modesty and thereby jeopardizing his wife's health (and even life); that if he were not there, she would consent to the exam; and, even possibly, that the husband and wife are uneducated or illiterate. I want to present an alternative story about this couple that focuses on shared values and calls into question these interpretations, which instead focus on their otherness.
The framework that I want to use to tell this alternative story is articulated by the 18th-century philosopher Immanuel Kant, who believed that a foundation of universal values underlies or is at the root of all of our particular and disparate moral commitments. Kant's central tenet is that all human beings share the same basic moral law which he named the “categorical imperative.”18 Leaving the nuances aside, this moral claim amounts to a version of the popular Golden Rule: “Do unto others as you would like them to do unto you.”19,20 Kant's formulation of this principle is slightly more abstract, but the essentials are the same: “Act in a way that your action can be willed at the same time as a universal law of nature.”18 The Kantian view is an antirelativistic position that holds that common, universal values are simply instantiated differently in different times and places; they all emanate from the very same principle of the categorical imperative. When we see these very different instantiations, we can easily recognize the differences that distinguish one set of values from another and miss entirely the commonalities they share. But focusing on the differences without noticing the commonalities may make those value differences seem greater than they actually are—to the point that the other's value system seems too foreign or alien to be considered legitimate.
With that as the background, then, we again turn to our case to examine the underlying values and beliefs that anchor the couple's requests in an effort to determine whether their values really are that different from our own. I want to look at two values in particular that I believe are universal and merely instantiated differently: autonomy and bodily privacy.
A focus on commonality: The universal of autonomy
To make the case that all human beings value autonomy, I want to offer a fairly general working definition: Autonomy is the “right of self-governance.”21 I also want to clarify that autonomy is not to be confused with “patient autonomy,” a distinctly U.S. concept that is significantly different and quite specific: “the right of patients to make medical decisions and exert control over their medical care.”
What is important to understand about autonomy is that one can self-govern by making decisions, or one can self-govern by deferring to someone else's superior expertise. A satisfactory expression of my autonomy does not necessitate that I always be the one who actually makes all decisions; deferring to someone else who is more expert does not result in the feeling that my autonomy has been compromised. Superior expertise is a justified and rational ground for putting the responsibility of decision making in another's hands. To willingly hand over a decision, though, is quite different from having decision-making rights taken away against one's will or express wishes. When a person's autonomy is compromised in this way, he or she feels oppressed, forced, or coerced as opposed to situations in which an individual is gladly unburdened of a decision he or she feels unqualified or incapable of making. Take an institution that is not well understood in mainstream U.S. culture: the arranged marriages common in certain Middle Eastern or Asian cultures. Two parties consensually entering into an arranged marriage is a very different circumstance than a marriage that occurs against the will of one or the other party. In cases in which the two individuals do consent, not only have they exerted their autonomy in giving their consent, but also they likely feel that appropriate (i.e., competent, qualified) persons have made the decision in an appropriate way. What seems oppressive and an affront to autonomy to one person may not seem oppressive or an affront to another. We all have a vested interest in having our autonomy respected, but what that means across different people, cultures, and times can differ significantly.
Returning to our case, then, from the mainstream U.S. view, we worry that the patient's lack of participation in the decision making about her illness indicates that her husband is thwarting her autonomy. But another possibility exists: She is comfortable (maybe even relieved) yielding to her husband in this matter; that is, she defers to him because she perceives his wisdom in this arena to be superior. Assuming malevolence on the part of the husband is premature and makes him into a moral villain without justification. And there are stakes involved in this villainizing: It can undercut the providers' resolve to work cooperatively with him in finding a patient-centered solution to this dilemma.
A focus on commonality: The universal of bodily privacy
Finally, the value that seems to be most at odds with contemporary U.S. mores is bodily privacy. Perhaps no other aspect of this case makes the couple look more parochial than this one. And yet, as with autonomy, I want to argue that bodily privacy—defined for our purposes as “a concern that parts of the body remain concealed from the view of strangers”—is a universal value and that all cultures take great care to protect it.
To understand the context of the woman in the ED, we need to think about the relationship of Purdah to the U.S. teaching hospital. Think about how casual we are in that setting with regard to the number of people who interact with, examine, question, and simply view a patient: a triage nurse, other nurses, medical students, residents, phlebotomists, ED techs, an attending, specialists—The list goes on and on. A conservative estimate of the number of individuals who will interact with the patient is 10 to 15. How many of these individuals will be men? Conservatively, let's put the figure at 5 to 10. Now imagine what this patient is experiencing: It is the first time her body is exposed to a man not related to her, and the exposure is not just to one man, but many. The radiologist performing the ultrasound may be the 5th (or 10th) man to come into her room.
The natural objection to putting ourselves into this woman's position is that we cannot even imagine having this level of bodily modesty. We understand that in the context of medical care the body needs to be exposed. We might conclude, then, that we are incapable of feeling what this woman feels.
To counter this conclusion, I want to conduct a “thought experiment,” in which we take a turn being “them” in that “us–them” dichotomy. For this thought experiment, I want to take us to Germany, to a typical gynecology practice.
If you were a patient coming for an annual gynecological exam, the nurse would escort you to a room with a curtained area in the corner where there would be a stool on which to place your clothes. The nurse would instruct you to take off all of your clothes and lie on the examining table, placing your feet in the stirrups. And then, without offering a gown or drape, the nurse would leave. The gynecologist (the “Frauenarzt”) might be in the room while you disrobe and walk to the table, but more typically he would come in once your feet are already in the stirrups. (In Germany, more women are now entering the field of gynecology, but men still outnumber the women in this specialty.) No nurse would be present for the exam. The physician would conduct the exam, health history, and postexam discussion all while you remain naked. How would you feel in this exam room: embarrassed, vulnerable, ashamed, mortified, humiliated, violated, powerless? Now to exacerbate a situation already difficult for you—a U.S. patient—imagine that five (or more) male clinicians had come into the room at various times during your appointment.
One powerful objection might be that the two cases are not analogous: The experience of a U.S. woman in a German gynecology practice is not the same as the experience of a Muslim woman living under Purdah in an ED in the United States. The objection would run thus: The level of exposure is not at all comparable in the two cases—The woman in Germany experiences complete bodily exposure, whereas the woman in the burqa case experiences almost no exposure. I argue that the level of exposure, relative to the respective cultural boundaries, is exactly the same.
What constitutes the “public body”—defined as the parts of the body that strangers in ordinary public settings may typically view—differs in Germany, in dominant U.S. culture, and under Purdah. We might name these different standards for the public body the “sauna standard” in Germany, the “bathing suit standard” in the United States, and the “burqa standard” under Purdah. “Sauna standard” gives us a good understanding of how liberal typical German culture is regarding the public body. Public saunas are almost universally mixed gender, and full nudity in the sauna is the norm; in fact, nudity is often strictly enforced in saunas because it is considered to be most hygienic. No wonder, then, that medicine takes the same approach to nudity. The practice of gownless medical exams mirrors bathing-suit-less sauna participation exactly. In contrast, the hospital gown typical in U.S. medical settings reflects the bathing suit standard. The body parts routinely exposed by someone wearing a hospital gown—hands, arms, neck, face, hair, back, legs, feet—are exactly the body parts revealed by a bathing suit. This level of exposure is allowed on any public beach or at any public pool in the United States. None of these body parts are part of the public body of a woman living under Purdah. For the patient who subscribes to the burqa standard, the level of exposure in a hospital gown is just as much a violation of bodily privacy as the sauna standard is for a typical U.S. woman. Unsurprisingly, this conservative Muslim woman resists wearing a hospital gown—just as a U.S. woman would resist total and constant nudity during a German gynecology visit.
What Might Patient-Centered Care Look Like in This Case?
With this new focus on the commonality between us and this couple, recognizing an overlap in our common core commitments to autonomy and bodily privacy, can we move past “us versus them” thinking? How do we honor the couple's values while providing quality medical care? How do we deliver patient-centered care, given the possible limitations in a busy, already overstretched ED?
Because our dual goal is to safeguard the patient's health and to respect her values, we should look at each of her requests to see how we can best meet them. Let's consider her autonomy. Whether she wishes she could exert control over her own medical care but is being prevented or whether she gratefully defers to her husband, she is in the marriage (and the culture) she is in, and the husband seems to be the decision maker. Ideally, someone on the team could ask her whether she wants to speak to the clinical staff without her husband present, but it is hard to imagine her saying “yes” given the fact that she will remain in her marriage when this health care crisis has passed. The role in health care is not to change cultures, and, short of addressing abuse, it is not to change marriages.
Then, with her implicit consent that he is the surrogate decision maker, the medical team must give the husband a carefully, sensitively described picture of the medical facts of his wife's case, including the risks she is facing, the purpose of the diagnostics, and the consequences of an undiagnosed ectopic pregnancy. Of course, this suggestion does not seem to be any different from what any clinician would do in any circumstance, and, in the essentials, it isn't. There is, however, a world of difference between discussing care options with a surrogate who seems to be unreasonable and self-interested and one who seems to have his loved one's best interests at heart. In talking respectfully with the husband, the clinical team might solicit his concerns, ask about the parameters he sees for her care, and ultimately request his help.
Protecting the patient's need for a high level of bodily privacy means both working to minimize the degree to which her body is exposed and controlling the gender of the providers who see her. Can the number of people who interact with this patient be minimized? Can a female ED resident or attending do the pelvic exam? Can a female tech or radiologist do the pelvic ultrasound? Can these exams be done behind additional drapes while the patient is still wearing her burqa?
Discriminatory Request or Protecting the Patient?
Before closing, I want to return to the ad hominem concern in this case. Providers may resist accommodating this couple's demands because they object to bowing to any kind of discriminatory request for a certain demographic of clinician. My response to this objection (perhaps controversially) is that ignoring or dismissing the couple's request is tantamount to being complicit in a kind of psychological or emotional assault, so concerns about discrimination must yield here. It is naïve to believe that no harm will come to this patient if she is forced to submit to strange men seeing and examining her naked body. The duty “to first do no harm” forbids this type of injury to patients and trumps the otherwise governing value of nondiscrimination. But what if no female techs, radiologists, ED residents, or attendings are available on the service? We cannot, as Kant22 persuasively argued, be obligated to do what is impossible, so if no female providers are present, then the patient must be offered the option of transferring to another hospital or accepting the providers at hand. Patient-centered care can obligate us only to provide the options we actually have to offer.
Patient-centered medical care is not only a rejection of “my way or the highway” thinking; it is also a commitment to meeting patients on their own terms and respecting their values. We need to enhance our focus on commonality, rather than on difference, especially as the United States becomes more diverse. Providers must avoid thinking in “us versus them” terms—not only because “us versus them” is a false dichotomy but also because such thinking decreases the resolve to meet patients where they are. Patient-centered care is a progressive step forward in meeting the needs of patients in U.S. clinics, and all patients are deserving of it.