My friend is extremely bright, well-read, and certainly an educated healthcare consumer. I pushed for exactly how she knew the doctor was “good” and “talented.” She reiterated her previous comments, and then compared him with her previous physician, whom she did not consider very good, disliking his communication style. She felt he wasted a lot of time discussing trivial things. “I don’t want to have a relationship with the guy; I just want him to take care of business,” she said.
I observed that such practice characteristics have little to do with whether the physician is “good” or “talented.” My friend pushed back at me to define how a consumer determines whether a physician is good. My comment was an affirming “exactly!” When we have few ways to evaluate quality with certainty, we default to attributes we understand. My friend judged her doctor based upon her perceptions and how his practice characteristics aligned with her personal style.
Patients are unsophisticated healthcare consumers, not understanding what we do or the services we deliver. Even the highly educated are not medically sophisticated healthcare professionals. A layperson can spend days studying an illness, but a physician providing treatment can quickly dominate a conversation and delineate what patients don’t know.
Patients measure our effectiveness by making comparisons of what we do against things they understand. In other words, they use proxy measures. Proxies are things that patients understand and think are important, and they judge our effectiveness based upon them. My friend judged her physician’s quality based upon her interactions, which is what she perceived as important.
Cleveland Clinic has come a long way on its patient experience improvement journey by using standardized survey data. However, we often ask ourselves what we’re missing and what more we can do. To better understand the importance of patient proxies, we commissioned two studies in 2012 to gain additional insights.
At our main campus hospital, we randomly survey about half of our inpatient discharges with the HCAHPS survey. For the first study, we randomly sampled 900 patients from the other 50 percent of discharges, those not automatically receiving the survey. We administered the HCAHPS survey exactly how it’s done for Medicare, then asked the 900 patients why they answered each question the way they did. We wanted to know how their thinking influenced their responses.
The second study was ethnographic research on one of our inpatient floors, Ethnographic research captures insights by observing processes and subjects in their natural environment. Since we were having difficulties with the inpatient services experience, this type of research would help us better understand what was happening and identify what we might be missing so that necessary improvements could be implemented.
Four researchers were located on one of our floors for about six weeks. They interviewed 124 patients and families, followed them around the hospital, talked to their caregivers, and observed staff interactions with them in providing services. The research team also collected the observations, concerns, and opinions of patients, families, and staff regarding hospital treatment.
These two studies provided quantitative analysis of patient perceptions and ratings of our organization and care, as well as detailed qualitative analysis of the environment that led to those perceptions and ratings. The collective results were illuminating and surprising.
“Patients want more respect” was an early conclusion; when this was revealed, I worried that we had wasted money. Everyone in healthcare knows that. But the inference wasn’t so simple. Patients don’t merely want more respect from their doctors or nurses; patients want more respect from everyone they encounter in the healthcare environment. And it gets even more granular: It’s not just about respect. It’s actually about being recognized as an individual, not as a patient.
Hospital patients are bombarded by interactions with people whom they’ve never met before. Everyone is a stranger. The person most familiar, their “best friend,” is their doctor. In many cases, this physician is the only person a patient has met before being admitted. Everyone else a patient encounters—a lot of people—is essentially a stranger.
The number of people increases when patients share a room. Imagine that you’re a patient in a semiprivate hospital room. You’re not only deluged with a host of caregivers you’ve never met before; you’re also having first- or secondhand interactions with your unfamiliar neighbor in the next bed and his family, friends, and caregivers. From all these people, patients want respect as human beings.
I once heard it said that patients are a lot like prisoners. Fortunately, I’ve never been a prisoner, but the analogy resonates. Think about the similarities: You are brought to the building; do you really want to be there? No! We take your clothes, give you a gown, and attach a wristband. We put you into a small room with a stranger. There isn’t much for you to do. Strangers whom you don’t know, and may not like, tell you what to do. We serve you terrible food. There are long, boring periods with nothing to do, and you can’t leave. (Well, I suppose you could.) And you are frightened. We need to ensure that everyone in healthcare treats patients and their families with respect as individuals.
Patients use an array of proxy measures to judge us. In addition, a particular proxy judgment can color opinion about all the care patients receive. Physician-nurse communication is one example. When a doctor rounds on a patient at 6 a.m. and talks about the day’s plan, the patient expects the nurses on duty that day to know the plan. If the patient asks a nurse about the plan at 8 a.m. and he or she can’t answer questions, the patient, appropriately, finds this unacceptable and thinks, “How can they deliver high-quality medicine when the nurse and doctor can’t even talk to one another?” The patient uses the communication interaction as a proxy for how well the hospital functions.
Another example of a proxy measure is environmental cleanliness. If a patient’s room is cluttered or appears dirty or poorly maintained, patients and families wonder whether the hospital can deliver quality medicine: “They can’t even keep the room clean, so how can they perform a good surgery?” What the patient and family see and hear in the healthcare environment is processed against what they believe is important—in some cases, their values—and this directly impacts how they view their care or the organization. A stay-at-home mom who proudly worked hard every day for 30 years to keep her home spotless for her family would naturally be appalled at having to spend time in a dirty hospital room.
Patients also want caregivers to be happy, one of the most baffling findings. Critics of the patient experience movement will view this as validation that they are right: “See, it’s about making patients happy. They are focusing on the wrong thing, they don’t know how to judge quality, and they’re holding us to this ridiculous standard that has no impact on how well we perform our care.” The critics are wrong. It’s not about caregivers literally being happy; it’s about how we conduct ourselves in front of patients and how patients perceive caregivers’ actions. If I walk into a patient’s room and appear to be bothered by something, look sad, or display negative emotions, patients can have several responses. They may wonder if they did something wrong: “Did I do something to offend Dr. Merlino? Is he mad at me?” Patients are in a very submissive role relative to healthcare providers. Most are afraid to challenge nurses or doctors. They are very afraid of doing or saying something negative, concerned that they’ll be treated differently.
While on leadership rounds at one of our facilities, I went into the room of an elderly Hispanic woman. We asked about her hospital stay. Everything seemed OK at first, but the more questions we asked, the more upset she became. Finally she started to cry. Asked what was wrong, she said, “That person, that person.” The patient was very afraid of one of her caregivers, who was mean to her, ignored her, and made highly inappropriate comments. Apparently, while the patient, who needed assistance to ambulate, was on the toilet, the caregiver joked that she would just have to sit there all day! The patient didn’t want to complain out of fear tha
t the caregiver would retaliate or persuade other caregivers to treat her badly as well. My stomach turned as I listened; joking or not, it was highly inappropriate and, in my mind, was tantamount to neglect. We immediately addressed the situation and filed a patient complaint and grievance. That caregiver will have no other opportunities to treat our patients with such disrespect.
A caregiver’s negative expression may also make patients wonder whether there is something of concern with their condition or care: “Is there something Dr. Merlino is not telling me? He looks worried. Should I be worried about something?” Apply this finding to the story I relayed earlier about brain cancer. Patients sit in their hospital beds focusing exclusively on what’s happening to them. The more serious the condition, the more intently patients and families search for visual and verbal cues. They seek ways to supplement what we say to better understand their personal situations.
My own experience as a patient illustrates this point—and also strengthened my empathy. My wife, Amy, and I were in an automobile accident in 2010. A young woman, who was texting while driving, failed to yield right-of-way and turned her car into ours, which resulted in a head-on collision. But for the air bags, seat belts, and a well-constructed car, I’m quite certain I’d have been dead. I remember it vividly: as the crash approached, I turned my head to the right and put my arm out across my wife’s body. The steering wheel air bag deployed into my left upper chest, neck, and face. Fortunately, we were not seriously injured, and after helping my wife out of the car, I checked on the driver whose vehicle had hit us. I found her clutching her cell phone, a little dazed and crying, but seemingly uninjured. Still at the accident scene, I started to feel pain and swelling in the front left side of my neck. I soon began to have difficulty swallowing. My symptoms progressively worsened. When the paramedics arrived, we refused transport to the hospital—we were physicians; of course we were fine. The accident happened very close to our home, so the kindly police gave us a ride.
I covered trauma call while I was a surgeon at MetroHealth Medical Center, our region’s Level I trauma center, so I was familiar with these types of injuries. The differential diagnosis of my symptoms included a handful of possibilities, mostly benign. But one was a serious, life-threatening carotid artery dissection or aneurysm that is a traumatic injury to one of the large vessels of the neck that supplies blood to the brain. An acute dissection can cause critical loss of blood to the brain resulting in a stroke and possibly death. Of course, I immediately thought I might have that, as it is frequently caused by a direct blow to the neck. When we arrived home, I convinced Amy that we should go get checked out. Naturally, I did not reveal my worst fears.
I drove us to the hospital (something I don’t recommend). On the way, I called my friend and former colleague, Jeffrey A. Claridge, who is director of MetroHealth’s Division of Trauma, Critical Care, and Burns. MetroHealth is northeast Ohio’s only Level I trauma center, and part of the Northeast Ohio Trauma System in which the Clinic is a member. It is the appropriate hospital to manage the most severe injuries, such as a traumatic carotid artery dissection, which I feared I might have suffered. As luck would have it, he was in the hospital on call that night. I described my symptoms to him, and he immediately shared my concerns.
It took about 30 minutes to drive to the hospital and another 30 from the time I arrived to the reading of the computed tomography (CT) arteriography of my neck. From the time I first feared a serious diagnosis to the last seconds watching the images unveil on the CT monitor, I had a single focus: Would I need emergency surgery? Would I have a stroke? Would I die?
I remember very little of my time at the hospital before the point I received my diagnosis, which was no diagnosis! I vividly remember Claridge questioning me about my symptoms and examining my neck. I watched and listened intently, waiting for him to say I had nothing to worry about, but it never occurred. I studied his facial expressions, looking for a smirk to suggest I was a typical “doctor hypochondriac,” but … nothing. My entire life, everything I was, everything I thought about, collapsed around an immediate life-threatening situation.
I remember my relief as I watched the images unfold on the CT scan monitor, revealing there was no injury. In that instant, my life was returned to me and my anxiety and fear disappeared. This is how our patients feel and perceive their environments.
Patients want to know what’s going on. I know this sounds simple, and everyone in healthcare understands that patients need to know the plan of care and have appropriate follow-up. But patients’ craving for information is much more granular and comprehensive. Remember, all hospital patients have to do is think about what’s happening to them. If a physician walks in at 7 a.m. and tells the patient he needs an x-ray of the chest, and the patient goes to radiology at 9 a.m., he wants to know the results. If the physician does not come back until the afternoon with the results, the patient sits around all day brooding, “Did the doctor forget to check the results? Does the test show something bad that the doctor isn’t telling me?” Again, patients are stuck with time on their hands to worry about what’s going on. If we don’t provide information or manage patients’ perceptions, they will fill in the blanks themselves.
While patients traverse the healthcare environment, they are concerned and afraid. In some cases, they are terrorized. Triggers for their tremendous anxiety are everywhere and can be very little things. Patients are also confused and have tremendous uncertainty about what’s happening to them. We make this worse when we fail to communicate well or coordinate with other caregivers.
A final important point from our studies: patients don’t want to be patients. I once proposed a contest to a conference audience, with an expensive prize to the winner. I put up a slide of a private jet, and I told my audience to get ready to quickly raise their hands, because the first hand I saw would be the winner. It was pretty funny to see all their hands at the ready. I told the audience that Cleveland Clinic had the number one heart center in the United States, with outcomes second to none. The first person to raise his or her hand would get a free, all-expenses-paid trip to Cleveland on that private jet to have a heart operation. What a deal! The greatest heart center in the world, with the best outcomes! I implored the members of the audience to raise their hands. No one did, because no one wants to be a patient.
This may be our most obvious study finding, as well as one of the most obvious facts in healthcare. No one wants to be our customer. The studies Cleveland Clinic conducted are a trove of what hospital patients think and experience. If we would query caregivers about the findings, no one would disagree. But we don’t think about them. We don’t consider them.
Our challenge—our responsibility—is to ensure that everyone in the organization understands what it’s like to be on the other side. Think about what I said at the beginning of this chapter. Most organizations don’t take the time to really understand their customers. But when we get granular, when we try to put ourselves in their shoes, when we ask how patients think about things, we uncover extremely important information to guide our work.
Equally important to the point that no one wants to be in the hospital or visit a healthcare provider is that no one wants to come back. I see many patients with inflammatory bowel disease, specifically Crohn’s disease. It’s a chronic disease for which there is no cure, and sufferers can have mild manifestations to terrible, severe, and recurrent manifestations that require multiple hospital admissions. You can feel their anxiety and trepidation when they are told they should be admitted to the hospital. We typically fail to recognize or appreciate patients’ post-traumatic stress from previous life- or health-threatening events.
There’s no absolute need to hire survey companies like Cleveland Clinic did to help understand patients. Taking time to genuinely listen and understand their comments is what’s important, because it provides a wealth of information. Patients tell us things every day, but we frequently fail to listen and reap the knowledge to improve the
patient experience. If we take a little time to get to know our patients as people, we not only will establish better relationships; we will be better caregivers.
Healthcare organizations receive a wealth of information in comments expressed through letters, surveys, and personal interactions. We need to study them and absorb what they tell us. I’ve heard it sneered that the plural of verbatim is not data, but verbatims. No! Verbatims and anecdotal data are very powerful when evaluated thoughtfully, used in the context of the local environment, and pooled with other data. For example, one of our surgeons received patient comments that he was not seeing them after operations, that he was very short when he did see them, and that he was rude and did not answer questions. Similar comments from eight different patients about one physician over a short time period may not be randomized, validated data. But it provided a pretty accurate representation of what was happening.
This physician was shown the comments and counseled about how to improve his practice, and the negative comments ceased. Verbatim feedback must be used carefully. We cannot condemn a physician as a bad practitioner based on a single patient complaint. Furthermore, there may be local process issues that impact patients’ perceptions of what’s happening. Suppose patients are cared for by a team of physicians, and one doing a particular procedure does not see patients the next day, but another does. This may indicate not that the practitioner evades patients, but that we’ve failed to effectively communicate whom patients should expect to see. So just as quantitative data must be used in perspective, single comments can be windows of opportunity when appropriately evaluated.
There are severe limitations to quantitative data as well. For years, we reported a satisfaction measure called “appointment when wanted.” We tried new tactics, implemented new policies, and held managers accountable. But despite significant effort to improve access, we never raised the score. While we saw improvement in how patients rated our organization and their providers, we made no difference in how patients perceived access.
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