The most compelling way to show you care is to ask questions.
SIMON AUSTER
A LOT has been said about what doctors should feel. The Association of American Medical Colleges states that “physicians must be compassionate and empathic in caring for patients.” Compassion is defined variously as “sympathetic pity and concern for the suffering of others” and as “sympathetic consciousness of others’ distress together with a desire to alleviate it.” No patient, however, has ever benefited from what their doctor was feeling—only from how they translated those feelings into some sort of action or interaction. I may feel terrible about your illness, but if I don’t do anything to comfort you, how are you helped? And if I do act on those feelings with good intentions but without first finding out what you want, could I not make things worse?
What sort of physician emotions, then, facilitate effective care? Much has been written about the importance of empathy in patient care, an affective mental process described in Merriam-Webster’s Unabridged Dictionary as “vicariously experiencing the feelings, thoughts, and experience of another.” The term, which was first used in English in 1904 in an essay on art appreciation is the literal English equivalent of the German word Einfuhlung, which translates to “feeling into” a work of art. Empathy is often contrasted with sympathy. Whereas sympathy entails simply sharing the feelings of another, empathy entails sharing those feelings as a means of coming to an appreciation of the other.
Although there is disagreement regarding the exact definition, in a 2014 systematic review of studies to cultivate physician empathy, the authors conclude that “most constructions of empathy have in common . . . an understanding of the emotional states of others and expression of this understanding.” Jodi Halpern, who has written a book about empathy, as noted in chapter 2, argues that the term has both cognitive and affective elements. These include “imagining how it feels to be in another person’s situation,” and “emotional attunement.” Examples of the latter are “listening to an anxious friend, one becomes anxious” and “while talking with a coworker, one feels heavy, depressed feelings.”
How do these feelings influence our behavior? Does the heavy, depressed feeling you experience in the company of a coworker, in Halpern’s example, make you more or less inclined to reach out to them? If you do reach out, are your actions based on an accurate perception of what they need, or are they conflated with what you think you would want if you were in their situation? Might thinking you know what they need make you less inclined to ask? Without answers to such questions, how can one ascertain whether a physician’s empathy is going to be good or bad for a patient?
In 2007, Simon and I published a paper arguing that the term caring is preferable to empathy for describing the ideal state of mind of a clinician healer, and we raised concerns about the latter in a section titled “The Trouble with Empathy.” Now this distinction between two apparently similar words may seem like the ultimate “tempest in a teapot.” Many think of the two words as essentially interchangeable. Why make a fuss about which one is better? We concluded that a lot is at stake. One of the challenges we faced was disagreement about the distinctions we drew between the terms. Some argued that we were just misunderstanding what empathy is, and attributing some of its positive characteristics to caring.
The purpose of this chapter, titled “Caring,” is not to reengage that debate but to highlight attributes that are essential to a healer, attributes that I believe are better characterized by the term caring than by empathy. If some readers disagree about how I am using these terms and would say, “But you are describing empathy too,” that should not get in the way of the aim here, which is to consider how feelings and thoughts can constructively—or not constructively—influence how we respond to others in distress or suffering.
To care is “to look after and provide for the needs of.” Note that the definition specifies action, in contrast to empathize, which is experiencing a feeling. A recent story of a passerby who rescued a four-year-old boy dangling from a balcony vividly illustrates instinctive caring: Mamoudou Gassama, an illegal immigrant from Mali who had every reason to keep a low profile while strolling down a street in France, saw the child about to fall from the fourth floor. With athleticism fueled by adrenalin he scaled four stories and snatched the child from death, a feat captured by others on video. When interviewed about what motivated him, all he said was, “I like children, I would have hated to see him getting hurt in front of me. I ran and looked for solutions to save him and thank God I scaled the front of the building to the balcony.” His response to the immediate need of someone in a precarious situation exemplifies caring as action. Others might have empathized with the plight of the boy, but that would not have kept him from falling.
Mr. Gassama’s comment that he “looked for solutions to save [the boy]” illustrates the practicality of caring. Rather than drawing on what he was feeling inside as a guide, he looked at the situation analytically, asking himself, “What can I do to get to this kid quickly?” He then rapidly mapped a path up a vertical surface that he thought he could navigate and ascended from one outcropping to the next. Because he cared, all that mattered was finding a solution, whatever it would take.
Remarkable examples of caring do often happen in health care. They too are defined, however, by actions or gestures rather than by what someone might be feeling. In our essay, Simon and I described a perinatologist colleague who exhibits characteristics of an autistic spectrum disorder while exemplifying caring. His patients say that he rarely makes eye contact, staring instead at a notepad he uses to jot down what they say and then formulate questions. He doesn’t touch them except to conduct a physical exam, not even shaking hands. Nevertheless, his patients rave about him, saying, “He always seems to know the right questions to ask to find out what is worrying me.”
It also turns out that while he isn’t good at making eye contact, he notices clues and pursues them. One day a Latina woman who didn’t speak English came in for an exam, bringing along her five-year-old boy. The physician noticed that the child appeared hungry and got him a snack, even though he wasn’t the patient. The boy turned to his mother and said something that the Spanish interpreter in the room translated as, “This tastes better than the rat we had for supper last night!” With more questions, the perinatologist learned that the family was living in an abandoned building and scavenging for food. In addition to setting up a social work consultation, he and the residents in the clinic contributed money, and a volunteer went out and bought food for them to take before they left. The perinatologist worked out a plan to get them a continuous supply of food until social services support could be implemented.
The physician behaviors that aided this mother and child consisted of observations, questions, and then thoughtful interventions based on the answers to those questions by someone who doesn’t even make eye contact. In the way the term empathy is used in the literature, it would be hard to say that it was present here. Like the example of the man scaling a building, what we see is caring in action.
The case of Ms. G, described by Halpern and considered in chapter 2, of a woman who chose to forgo hemodialysis and die after her husband left her for another woman, illustrates the distinction between empathy and caring. On the one hand, Halpern considers how she might have taken “a more empathic” approach to addressing Ms. G’s “conflict between talking and not talking, thinking and not thinking,” presumably while reflecting empathically on what she may be feeling. On the other, Simon proposes openly expressing anger at the patient’s passively allowing herself to be victimized—anger that comes naturally to those that care about her, such as her friends waiting outside her door. Seeing how all these people react, including her physician, may help Ms. G reframe her situation, transforming her from victim to potential victor.
Caring rarely requires such dramatic action; more often it is evident in small but purposeful behaviors. I spend part of my time in a VA clinic, where I supervise residents and often stay late to finish reviewing medical record notes. A couple of the attending physicians in adjacent offices make phone calls in the evenings to their patients after a long day, typically to discuss findings of test results or to check in on them. As many of the veterans at our facility are elderly and hard of hearing, I frequently overhear my colleagues speaking loudly into the phone. I’m struck that they don’t seem to feel rushed to get off the calls. After explaining test results, they’ll ask if the patient understands them and if he has any questions. Then, just when I expect them to hang up, they’ll often ask if there is anything else the patient would like to talk about. From the tone of their voices it’s evident that these are long-standing relationships. Their final open-ended question reminds me of a son or daughter ending a call with an elderly parent who lives alone. They just want to be sure everything is going to be all right. They care.
Asking questions is, in fact, the hallmark of caring. Not just rote questions, the kind one asks in order to fill in all the checkboxes or elements of a note in the electronic medical record, or those required to do a standard diagnostic workup. Those are sometimes necessary and usually required (often for billing purposes) but demonstrate attention only to the essentials of the job. The question-asking one typically hears when people care is a kind of probing that indicates they are really trying to figure out something about the person or their situation so they can help.
When we don’t care that much, we tend to make assumptions rather than ask questions even when the stakes are high. Assuming someone is going to be okay rather than checking probably means one is not that invested in whether things actually turn out okay. On several occasions I’ve seen inpatient teams send a frail patient home from the hospital, assuming they have the social support and resources to get their strength back instead of finding out if that’s really the case.
Disregarding clues that a patient is struggling also points to a lack of caring. As noted in chapter 5, the staff that listens to the thousands of audio recordings we collect of physician-patient encounters often comment in surprise at the questions that doctors don’t ask. They’ll say, for instance, “I just heard a case in which the patient’s blood sugars have gone way up, and the doctor just added more insulin but didn’t ask them what’s going on,” or “Listen to this one in which the patient said he’d been at home too ill to eat for two weeks and hasn’t sought medical care, but the doctor never asks him why he didn’t come sooner.” On a lot of these audio recordings the physician seems preoccupied with entering data into the computer, based on their non sequiturs (for example, responding to “Doctor, it’s been tough since I lost my job” with “Uh huh, do you have any allergies?”). It doesn’t necessarily mean, however, that the electronic medical record is the only reason they aren’t asking follow-up questions. If the computer were taken out of the room, they might still not ask about clues that their patients are struggling if they don’t see it as their problem—if the sense of caring isn’t there.
What leads us to care? Why do we care for some people more than others? What is the relationship between caring, curiosity, and engagement? How does caring impact the way we feel about our work?
First, caring is not some saintly trait that only the most special among us express. It is a universal instinct found in social animals—including dolphins, elephants, and chimpanzees—as documented in numerous studies showing that they console each other after one is beaten in a fight, decline food if taking it would cause harm to another, and even assist injured members of other species. Dog owners know that their pets comfort them when they are distressed. A 2007 New England Journal of Medicine article describes a cat named Oscar who roams the hallways of a dementia unit and curls up with dying residents during their last hours.
Why, then, do some physicians exhibit a lack of caring, as when they don’t respond to signs that a patient is struggling with a life challenge that may be impacting their care? I think it’s because of a lack of engagement. It is as we form connections with others that we come to care about them. Our motivation for engaging, however, may depend on what we anticipate we’ll receive in return. In our personal lives we may engage because the positive feedback and emotional support are often reciprocated. We may see fewer benefits to engaging in the professional setting of patient care.
There may be cultural norms, too, that diminish our motivation to engage in the professional sphere. Our society sanctifies the nuclear family: first find a “soul mate”; then have kids around whom life evolves. Politicians and other high-profile figures proudly assert that “my family always comes first” or, if they are fired, give as an explanation for why they are leaving the standard line: “I want to spend more time with my family.” While “family comes first” may be a slogan, it sends a message about other relationships. And yet, becoming an engaged, caring physician really does require a broader perspective, akin to “It takes a village . . .” Otherwise one can have the impression that real connecting, engaging, and caring are only for family and close friends. That amounts to drawing a small circle around oneself that excludes people who happen to be patients. The result is a lack of engagement with the surrounding world.
The world feels safer and kinder when people come out of that cocoon. For over 15 years I’ve taken the same route to work each day and the same homeless man stands on a particular street corner where there is a long traffic light, either selling the newspaper Streetwise or simply begging. Occasionally people roll down their windows to chat with him, which he seems to appreciate as much as the money, as his face brightens up and he appears animated. They may have given him change on other mornings, but sometimes they just say hello. The conversations look relaxed, without expectation of transaction or evidence of awkwardness or pity.
Occasionally, I’m surprised by who cares about me. At work one afternoon, I was feeding patient documents into a shredder in view of the waiting room at the local VA where I work, and an elderly patient I’d never seen apparently got concerned about my fingers getting too close to the blades. He limped over to warn me that the protective safety shield was loose and that I should be more careful.
In medical training I’ve seen caring framed as sacrifice. A training module designed to teach residents about professionalism posed a scenario in which the family of a patient the physician knew well was asking him to come see her in the emergency room when the physician was about to leave the hospital for an anniversary dinner with his spouse. The “correct” answer was to delay leaving, in accordance with the imperative to “put patients first.” Cases like this one, designed to illustrate putting patients’ needs above one’s own, pit the personal against the professional, in situations where the physician has to make a choice that seems to be almost a referendum on their character. On the one hand there is the symbolism of an anniversary dinner, which commemorates the most personal of relationships, and on the other hand the commitment to the profession—almost a marriage unto itself. Over the past 25 years there has been a gradual shift in expectations, from putting work first to “work-life balance.” What hasn’t changed, however, is the perception that work and personal life are a zero-sum game; that time invested in one is time taken away from the other. Work is often regarded as depleting and personal time as replenishing. According to American Medical Association surveys, average burnout rates range from 40 to 50 percent across all specialties, and prime coping mechanisms center around personal time: talking with family and close friends, and sleep. But what if the problem is a lack of engagement at work?
A major factor in burnout identified on surveys is depersonalization, which shows up as cynicism, complaining about patients and their problems, and devaluing others in the work sphere. In an essay on burnout in a Canadian medical journal, Karen Trollope-Kumar describes overhearing the following exchange among three physicians in the doctors’ lounge:
I am sick and tired of the endless stream of complaining patients! Do they really value what I’m doing for them? Do they have any idea how hard I work?
You’re complaining about patients—what about the government? What the hell do bureaucrats know about medical practice? I’ve got a whole raft of patients waiting for essential surgery. But how much OR time do I get? It’s ridiculous!
On top of everything else, we have to take on medical students. The other day I had a real know-it-all who kept asking me if what I was doing was evidence-based. I’m really fed up!
What’s missing from the litany of complaints is “too many bureaucratic tasks,” which tops the list on US surveys but not Canadian ones, likely because the latter has a single-payer system that simplifies billing. Conversely, the second complaint—the one about waiting lists for patients—is not often heard in the United States because there are few caps on spending. The first and third, however, are not about system problems but about the state of mind of physicians. They reflect depersonalization: blaming patients and medical students for one’s miseries. Depersonalization is the antithesis of engagement. People are no longer experienced as individuals, but as particular types of problems. Patients become ingrates and medical students, irritants.
With regard to the first complaint, that patients don’t adequately appreciate their doctors: speaking personally, I’ve discovered that when I engage with a patient and then begin to care about them, any concerns about whether they appreciate me become superfluous. The moment a human connection is established I know they appreciate me as a person, because that is implicit in all positive, engaged interactions. For them to say, “Thank you very much, Doctor Weiner, you are so wonderful” is nice but unnecessary, and maybe even a bit awkward. On the other hand, to walk into the exam room and see their face light up when greeting me feels perfect. When that doesn’t happen, there are other ways I feel satisfaction: With angry, self-absorbed patients I find gratification in indications that they are moving in a positive direction—and if they haven’t changed yet but I’ve discovered a way to interact with them that may nudge them in a better direction and keeps them from getting under my skin, I feel accomplishment.
In sum, I’ve learned that if you care about your patients, you don’t need or necessarily expect their appreciation. And the very idea that patient appreciation is owed to physicians raises questions about what the relationship is for. Expecting ego gratification from patients reflects a lack of clarity about the boundaries of the medical context (see figure 5.1). The patient has health needs, is often feeling miserable, and comes to you for help and relief. You are there to respond to those needs. To expect them to tend to your personal need for appreciation is asking them to interact with you outside of the medical context.
Finally, when the physician quoted above asked, “Do they have any idea how hard I work?,” I’m left wondering whether some of that feeling of work burden comes from the effort of depersonalization itself. Engaging with patients is less work than holding them at a distance. For instance, when I’m open about my limitations—for example, that I’m not sure what’s going on with them medically and would like to discuss the situation with another doctor—I free myself of the burden of portraying myself as all-knowing when I am not. Engaging with patients also feels less isolating, because they become partners in solving their health problems.
With regard to the third complaint: medical students who ask challenging questions. As someone who works with medical students all the time, I find this gripe depressing. The wide-eyed, not-yet-cynical interest of curious medical students excited that they finally get to care for patients is always refreshing. If they challenge me with a good question, and I don’t have an answer, it’s a win-win to ask them to go look it up and let me know what they find: I learn something new and relevant to my work without any effort, and they get experience finding answers themselves. When clinician educators react negatively to student curiosity and questioning, they are undermining the vitality of the next generation of physicians. Medical students need the support of their attendings in order to get good grades and letters of recommendation required to advance, particularly if they aspire to a highly competitive residency. So if they get negative vibes, they will rapidly adapt their behavior to expectations by hiding or suppressing their curiosity.
That’s not to say that I find medical student education all fun. Students give endlessly long formal presentations of patients, often not proportional to the significance of the illness and without regard to the importance of particular symptoms. After listening for several minutes to a narrative that goes on and on, wondering what horrible disease I’m supposed to discern, I’ll realize that they are telling me that the patient has a cold. I have to remind myself that it’s a necessary part of the learning process. I suspect that the “fed-up” physician in the example above has no patience for student presentations and cuts them off after a few seconds. That was my experience as a student on a few occasions.
While these embittered doctors may come across as self-absorbed and entitled (to me they do!), it’s important to appreciate that they seem to be in real pain. It’s often hard to fathom that people who are earning good money, have high status, and are doing exactly what they set out to do are so unhappy. Burnout rates top 50 percent, and the suicide rate exceeds that of the population at large. Why are they miserable? I don’t think it’s for the reasons they give. It’s doubtful they’d be contented if their medical students stopped asking questions or they didn’t hear patients complain. They still wouldn’t have what they need, which is something they aren’t even aware is missing: human connection. They may not know what it is to engage, and they have little experience of caring about others with no strings attached.
It seems that many physicians exhibit a limited capacity to form human connections with others. Their detachment may reflect years of negative feedback when showing vulnerability, both during their upbringing and throughout the medical education process. They may have had little experience being nurtured by people who challenge and support them without expecting them to mirror their own image—that is, to conform. It’s not surprising that many detach, undermining their effectiveness as physicians. One can become a competent technician, but not a healer, when the capacity to form therapeutic connections is impaired.
I use the term impaired to convey that engaging is not a skill but a natural way of relating when two people interact without pretense. The impairment is an inability to be open. An openness to engage is not the same as having good social skills. The perinatologist described above is awkward to the point of not even making eye contact. Yet he noticed that his patient’s son looked hungry and got him a snack. As soon as he heard that the child’s family was scavenging, he began to ask questions, which soon led to a series of actions including spending some of his own money to get them food. At no point does he adopt a persona. His social deficits are part of who he actually is, not a withdrawal from others. His intervention is highly personal and unconventional: responding like a kind neighbor, as he reaches into his wallet. He engages (for example, offers the boy a snack), and he cares (asks a lot of questions to figure out how he can help when he spots a problem).
While engaging seems to be the precursor to caring, not every act of caring is preceded by engagement. For instance, Gassama’s rescue of the boy from a balcony was an impulsive act of caring, before which there was no opportunity to first engage. His stated motive for intervening was simply “I like children.” I suspect he is someone who is open to engaging in a wide range of circumstances. While many people may say, “I like children,” without meaning it, this guy showed he meant it! Individuals who don’t retreat into personas naturally engage throughout their lives, which inclines them to become instinctively caring people.
I don’t think of myself as a particularly empathic person. When I walk into an exam room and see an elderly man in a wheelchair who looks disheveled and seems slightly confused, I don’t imagine what it feels like to be in his situation, and I’m not attuned to experiencing his emotions. Rather, I get concerned about his home and social support situation. Does he live alone? Is anyone looking out for him? How does he shop, cook, and bathe? Has he fallen recently? Does he have an alert button he can use to call for help? As I listen to his answers, I’m also interested in how he responds, not just in the factual information he gives. How “with it” does he seem? If he is vague in his answers, I’ll get more specific: for example, “Can you tell me what you had for dinner last night?” I ask all these questions because I would not be comfortable ending the visit without knowing whether he’ll be okay. As far as I’m aware, that’s all I feel.
In those occasional interactions where I may be empathic, it seems to backfire. When I’ve identified with a patient’s pain—thought about what it must feel like—I’ve become preoccupied with what could happen to me! In particular, I see patients with chronic back pain, often accompanied by sciatica. Their suffering makes me think about how easily I could end up in their situation, to the point where I’m hesitant to lift even a suitcase and worry anytime I have minor discomfort in my lower back. I don’t see how having those feelings makes me a better doctor. In fact, my tendency to resonate too much with these patients inclines me to ask fewer questions because their responses make me personally uncomfortable. Delving into all their daily agonies makes me squirm, so that I’m less open to engaging. That’s a problem because it’s important to assess the impact of their condition on their life, including work, having sex, or cooking—whichever apply. In addition, because I’m imagining what they must be feeling, I’m not thinking about the ways in which people can learn to adapt and cope with chronic pain. What’s going through my head reflects my fears, not their reality. They may be developing coping mechanisms that I as their physician should know about and help them cultivate.
What I’m describing, in recounting my empathic response to patients with certain types of conditions, is not caring but a loss of boundary clarity. To deal with this response requires self-awareness that I have this tendency. I have to remind myself that my perception of their feelings is really about my anxieties, not their situation. Boundary clarity is knowing who you are: where you “end” and the other person “begins,” as schematically illustrated in figure 5.1. If you have boundary clarity, you appreciate that the feelings inside your head are just yours. As soon as you believe you know what another person is experiencing based on your own feelings, you have lost that clarity. Thinking you know what the other person is feeling is an overestimation of one’s capacities, a kind of arrogance. Even thinking that you know what a future “you” would feel were you to end up in the other person’s situation reflects an unrealistic self-assessment of one’s capabilities. All you can know is what you—and only you—are thinking and feeling in the present moment under a particular set of circumstances.
Such clarity points to just one option for learning about and helping others, which is asking them questions. If you have no illusions that you can feel their pain or know what it’s like to walk in their shoes, you’ll seek to find out by going directly to the source. The questions I pose, above, to the elderly man in a wheelchair stem from that sense of having no idea what’s going on with him. As the conversation advances, I start to form a picture of his situation and whether I should and can do anything to help.
Some might ask, “If you can’t empathize, then why would you care enough to try to help others in the first place?” I think caring follows from engaging. When you interact with someone with your boundaries touching theirs (figure 5.1), so that they are experiencing you and you are experiencing them, you naturally come to care about them. This is evident in the questions you ask, which reflect a genuine interest in figuring out what is going on rather than making assumptions.
At the two medical centers where I see patients, many are at the bottom of the socioeconomic strata. Some live in shelters or on the street. It’s struck me that I rarely engage with people experiencing homelessness who approach me on my way to work, but a few minutes later I welcome them in the urgent care clinic. They may not be the same people, but they have many of the same needs. Am I not the same person? The difference is that the second encounter occurs within rather than outside of the medical context (figure 5.1). I’m no longer trying to get to work on time, and the person coming toward me is no longer approaching me to ask for money.
Nevertheless, there is a risk that I will continue to hold them at arm’s length. When someone at the bottom of the social ladder seeks care, the question arises whether their physician will be as open to engaging and, ultimately, to caring as they are for a well-dressed professional who looks like them. The research on implicit bias and discrimination in health care strongly suggests they will not. While studies don’t specifically measure engagement or caring, they do compare both patients’ self-reported experiences and objective measures of quality, which show significant differences based on race and wealth, among other patient characteristics.
When interacting with someone experiencing homelessness, the physician may be repelled by the sight of disheveled clothing, the smell of an unwashed body, or the manifestations of severe mental illness and/or substance abuse if present. If a patient smells bad enough, I am distracted from engaging with and ultimately caring as much about the individual. I wish I were more like nurses I’ve worked with who don’t seem bothered by human stench or, if they are, don’t let it get in the way of engaging with patients. I also have trouble when someone is especially hard to understand. Perhaps related to my learning disability, I seem to have more difficulty than most others in processing garbled speech, as occurs among many with very low levels of education or severe dental problems. Without an effective channel for communication, engagement is limited.
At the same time, it is extremely important. Just as with other patients who seem to be barely getting by, there are things I want to immediately find out: Where is this person spending days and nights if they don’t have a home? Are they safe? Who do they have a relationship with, if anyone? Does our homeless veterans program know about them (if I’m at the VA that day)? Are they able to keep track of and take their medications? How did they manage to schedule this appointment and get here on the right day? As the conversation unfolds I notice how they communicate. Are they logical? Do they drift off on tangents? Do they seem anxious? As I formulate questions, I’m calibrating them based on what I hear. If the patient initially provides answers that are too vague, I get more specific, asking questions like, “What did you eat today?” and “Where did you sleep last night?”
I ask these questions to get a mental picture of the patient’s life context so that I no longer feel as if I am working in the dark, so to speak. I’ve come to realize, however, that quite a few of the residents I work with don’t seem aware that their patient even has a context. It’s as if the person popped up as a multiple-choice question. When they present a patient to me who comes in for diabetes management, they’ll rattle off a plan for ordering various labs and adjusting medications. When I question them, however, about the relevant backstory—what’s going on in the patient’s life that may be contributing to the poor diabetes control—they haven’t any information. What crosses my mind at those moments is the question, “Don’t you have an urge to know?” But I realize that in a busy clinic, an expectation of curiosity isn’t convincing unless I can show how it matters.
If I sense we are missing relevant context, I’ll follow the resident to the exam room and often uncover information that calls for a change in the original plan. At one recent urgent care visit I met an older man with poor diabetes control who had recently moved into a low-income assisted living facility, and it turned out that the transition had disrupted his routines. Among other things, he could no longer locate the calendar he used for keeping track of medications and appointments. We called his daughter, who was unaware of the mishap, and she agreed to get him a new calendar and help him back into a routine.
Later, when I asked the resident what she’d learned, the response was, “To figure out why he’s not compliant, I guess.” True, as far as it goes. But what she didn’t consider was the following: how keeping a calendar indicates that this man has a determination to maintain order in his life, that his personhood has been disrupted by a major transition, and that he has an offspring ready to help but who needs help herself in order to understand what her father’s needs are. These are strengths and opportunities we have to work with when caring for this man. And complimenting the patient on his resolve and his daughter on her readiness to step up will reinforce desirable behavior and show them that you are noticing—which is an indicator to them that you care.
Well-off, educated patients are less vulnerable in terms of lacking material resources, but they are still often frightened, confused, and emotionally distraught when a major acute or chronic illness sets in. And while doctors are more likely to take them seriously, they are also prone to another kind of bias, which is to assume “this patient is just like me.” I often get that sense when listening to audio recordings from a project in which my research team sent mystery shoppers into suburban practices across New Jersey. Several actors were healthy, middle-aged people who portrayed upper-middle-class lifestyles. At a new visit by a male patient in his 50’s, a male physician launched into a discussion about football, assuming his patient was a Giants or Jets fan, and carried on to a point that went beyond simple rapport-building. It sounded incongruous, given that we’d trained the actor to screen positive for depression and to decline a colonoscopy because his dad recently died of colon cancer despite having “seen doctors all his life.” In real life he had no interest in professional sports. The physician was making assumptions rather than finding out what his patient was like. The actor went along with it the way people do when they are trying to seem interested but are not. While there was a lot of chat, they weren’t engaged because the physician wasn’t tuning in to whatever the patient might need to talk about.
When someone cares, they are less likely to make assumptions, because they don’t want to take the chance that they might be wrong. Before chatting about football, a caring physician would find out what’s on the patient’s mind. That usually entails asking questions. This is especially easy to forget when we identify with a patient because they look like us. While there is a lot of emphasis in medical education on “cultural competence,” which refers to the ability to interact effectively with people of different cultures, the fact is that we all are, functionally, living on our own planets. While I don’t have anything against emphasizing cultural competence, I think it comes at the risk of forgetting how important it is not to make assumptions about those who apparently share our cultural identity. We are all unique in so many ways.
How does one go about discovering what’s important in a patient’s life that’s relevant to their care? What is the thinking process? As both a primary care doctor and a health care researcher, I’ve found an interesting parallel between getting to know patients and getting to know complex social systems, such as communities, as they relate to a particular question or challenge. In qualitative research there is an approach to explaining how the social world works called “grounded theory.” The aim is to arrive at a theory that is grounded in observations of whatever it is you are trying to explain. So, if you are trying to understand why certain minority groups are overrepresented among children referred for presumed attention-deficit/hyperactivity disorder (ADHD), you might observe and interview teachers, school administrators, parents, and clinicians until an explanation emerges that fits the data, refining your questions as you go along. I find this process analogous to trying to figure out what is going on in the life of a patient that is relevant to their health or health care. In either case, you don’t know where your questions will lead. In fact, it’s better not to have a hypothesis, but to keep your mind open. You are just trying to figure out what is going on.
A grounded theory approach stands in contrast to standard clinical reasoning, which is hypothesis-driven. For instance, if a patient comes to you with severe abdominal pain, you start with a relatively short list of possible causes and then, one by one, whittle the list down through a series of questions, physical exam maneuvers, and tests until you have a diagnosis. That’s what we mean by “narrowing the differential.” Whereas when someone has stopped taking their medications, you have to go into discovery mode rather than hypothesis-testing mode, because there is no list, meaning you don’t even know what is in the realm of possibility, because every life is unique. Discovering, as described above, that a patient’s poorly controlled diabetes was related to losing a calendar during a move to an assisted living facility and that the “treatment” was to engage his daughter to work with him and the staff required an open-ended approach to asking questions, followed by more questions, until it became clear what was going on and what to do about it. In the qualitative sciences this approach is called “constant comparison,” and arriving at the point where asking more questions no longer yields additional useful information is called “saturation.”
It may seem odd to call this process “caring” in the medical context, but I think that’s exactly what it is. Rather than just making assumptions about why your patient isn’t taking their medications, you seek to get to the bottom of the situation so that you can be sure you’re helping them. It starts with asking open-ended questions, and as you come to appreciate the particulars, you plan next steps, building on whatever strengths and resources they already have. If that’s not caring, then what is?
Questions for Reflection and Discussion
1. What are the differences, in your mind, between providing medical care that looks commendable based on a quality audit (for example, reviewing the physician’s note and orders) and medical care that reflects a personal interest in your patient’s well-being? Are they one and the same, or are there differences? If the latter, what do you see as differences? Can you give examples? How important do you think they are for a patient’s long-term well-being?
2. Think about a patient whom you became personally invested in or really look forward to seeing. What about the relationship led you to care so much? Is it that they remind you of someone you already know, that they have a positive attitude, or that you feel comfortable being yourself around them? Try to be as specific as possible. Can you think of changes you could make in how you approach patient interactions that would increase the frequency of these caring relationships?
3. What are things you would want to know about a close friend in another city who has been discharged to home following a serious car accident and who lives alone? Would you be concerned about depression? PTSD? Whether your friend can manage without help? What questions might you ask to assess the situation to your satisfaction? Now suppose that you learned that a patient of yours was in a similar situation. How might your questions be similar or different?
4. What is the path that leads you to care about patients at a personal level? Does it start out as curiosity, prompting you to learn something about them that intrigues you? Does it occur with engagement and boundary clarity, meaning you interact without holding them at any sort of distance, but keep the relationship within the medical context?