Service Fanatics

by James Merlino

  Family Members Are Uncomfortable as Advocates

  My father’s experience is a good illustration of this behavior. Dad never really liked going to doctors and, fortunately, was healthy most of his life, with only minor ailments. The family eventually convinced him to see an internist annually for a checkup. I remember sitting in my cubicle as a fellow at Cleveland Clinic when Dad called, saying how pleased I’d be of a recent step he took. Naturally, I was curious. He noticed blood in his urine, and instead of calling me, he immediately called his physician, who quickly saw him in the office. The doctor did a urine test, confirmed the blood, and prescribed antibiotics for a suspected bladder infection.

  My heart sank. In my surgical training, blood in the urine of a 77-year-old male is considered cancer until proven otherwise. My father immediately could read that I was unimpressed and asked what was wrong. Concealing my suspicion, I urged him to see a urologist to confirm the diagnosis. He was adamant about not doing so and was absolutely convinced there was no need. He trusted his physician and was unwilling to question his diagnosis.

  My personal anxiety grew because I also knew and trusted his physician. I wondered why he hadn’t made the same presumption and immediately ruled out the more serious diagnosis. I called the physician to express my concern and vividly recall this conversation and how I felt. I didn’t want to offend the doctor by questioning his medical judgment or suggesting that he had done something wrong. I ruminated about causing a stir if I were wrong about my suspected diagnosis. Being on the other side for the first time, I almost didn’t know how to help my father—whom to call or what type of specialist to consult. Should I push Dad to see someone else immediately, or should I allow this to play out? Maybe it was just an infection. My Type A personality and all my years of medical education and surgical training were suddenly reduced to ineffectiveness and garbled thinking as the potential “son of a newly diagnosed cancer patient.” I became a submissive victim of healthcare.

  While unintentional, the environment that we create—in which patients and their families feel submissive and powerless to challenge us—is dangerous. It’s dangerous for patients, and it’s dangerous for us, because we’re ignoring an important resource that can help us make the right decisions and ensure the delivery of safe, high-quality healthcare. Medicine today is very complicated and involves teams of highly skilled caregivers collaborating to deliver effective medicine and successful outcomes. Patients and families are as much a part of this team as the surgeon or anesthesiologist who performs the procedures.

  Patients Must Be Our Partners

  The concept of patient involvement has gone through several iterations and definitions in recent years. Healthcare leaders have considered how to better involve, educate, empower, and engage patients, and today’s buzzword is to activate patients. While there are nuances to these terms and how they apply to healthcare delivery, they all foster the same thing: greater participation by patients in their health.

  I prefer to characterize patient involvement as a partnership. A partner is defined as “a person with whom one shares an intimate relationship.”3 Or my favorite definition of partner is, “one that is united or associated with another or others in an activity or a sphere of common interest.”4 I can think of no better example of where people need to be partners than the working relationship that exists between caregivers and their patients.

  As a surgeon, when I examine patients with previous abdominal scars, I inquire about the surgery. I’m often stunned that patients frequently don’t remember or will say something like, “My prior surgeon took out a piece of my bowel, but I don’t recall exactly why he did.” It’s inconceivable that someone is admitted to a hospital, undergoes anesthesia, has something cut out of his or her body, and can’t remember what was done or why!

  While U.S. health literacy varies by education level, ethnicity, and age, it generally is low.5 As education level rises, a comprehensive understanding of complicated medical care and decisions remains difficult. Even physicians, given the increasing sophistication of medicine and super-subspecialization, cannot be expert in all diseases. As providers, we have a responsibility to help level the playing field by how we deliver information and interact with patients.

  Patients can help us and help themselves by being better educated about what’s going on in their lives. I’m not advocating that they need to be experts in healthcare or well-read about their particular problems. However, they are and become inherent experts in themselves. It can be very helpful for patients to understand the basics of their disease and treatment—keeping a comprehensive inventory of what has occurred, how they were treated, how they responded, and what their bodies “tell them.”

  Patients and family members can also be helpful in numerous other ways. Imagine if, before coming into the hospital, they all understood the importance of hand washing and were educated on how it decreases potential complications. We could then partner to help reduce these complications. If a caregiver coming into the patient’s room did not either wash her hands or “foam-up,” the patient, family member, or friend could ask the caregiver to do so before proceeding. Imagine how powerful and helpful this could be to improve compliance with the very important task of washing hands. Many providers would be annoyed at the challenge, but we should welcome it!

  The same type of partnered interaction is possible with medication delivery. At Cleveland Clinic, we instituted a program called Ask 3/Teach 3.6 We ask our patients to pose three simple questions when receiving a medication in the hospital: What is it? What’s it for? And what are the side effects? Likewise, we instruct nurses to deliver this information at the distribution of medication, teaching the patient what it is, what it’s for, and the possible side effects. We’re endeavoring to empower patients to assume a greater role in helping nurses create a safer environment for dispensing medications.

  I remember being annoyed as a resident in training when patients and their families asked multiple questions. Residents are often tightly scheduled, exhausted, and very task-oriented. They want to get their work done and go home. As caregivers, we often fail to realize that patients or family members who ask a lot of questions are offering us a gift, which we should gladly accept. They’re challenging us to make sure that we’re doing everything possible to provide effective care. Additionally, listening to patient and family questions actually validates whether we are communicating effectively. The questions that patients ask help us remember things. We should want all patients to be annoying “question askers.” It makes us better and helps them understand their case.

  We should encourage patients to be more involved in partnering with us because it is the right thing to do, but we also recognize that the world is different today. Patients are savvier and are leveraging new ways to get our attention and make sure that we involve them in their care. Morgan Gleason was 11 years old when she was diagnosed with juvenile dermatomyositis, an autoimmune disease that causes weak and painful muscles, skin rashes, fatigue, and fever. She was in the hospital, being treated for a complication of her disease, when she finally got fed up with people not involving her in her care. She complained that the medical team would come in really early in the morning when she was too sleepy to interact with them, but what really annoyed her was that too often the doctors and nurses would talk to her parents outside of her room, excluding her from the conversation because she was a child. She took action. She made a video called “I am a patient and I need to be heard” and posted it on YouTube. Overnight, she became a celebrity patient advocate. Morgan helped open the 2014 Patient Experience: Empathy & Innovation Summit. She was interviewed by Dr. Deirdre Mylod, executive director of the Press-Ganey Institute for Innovation, on stage in front of more than 2,000 people.7 Her comment to doctors: “You go to med school to become a doctor, but we don’t go to a patient school to become a patient”—implying that patients want to know what’s going on and be partners in their care.

  We Must Manag
e Patient Expectations

  Healthcare reform today is putting hospitals and providers at the center of a three-way squeeze, caught in an ever-shrinking triangle of decreasing reimbursement, tightening regulatory requirements, and increasing patient expectations. Heightened patient expectations result from greater consumerism in medicine. Leveraging patient expectations through patient partnerships will help us deal with diminishing resources and increasing regulatory burdens. To successfully leverage rising patient expectations, hospitals and providers must make two critical changes to improve how patients and their families interface with the healthcare system. First, expectations must be brought into line with reality, and second, patients must take greater responsibility for managing their care.

  Better aligning patient expectations with reality is critical. One of the most poorly recognized concepts in the patient experience is the idea of an experience-expectation mismatch, shown in Figure 12.1. Patients have preconceived notions of what will occur in the healthcare environment, and they often leave having experienced something very different from what they had expected (think of the patient referred to as “sunshine”). Patients gather these notions from their friends and family, the media, the Internet, and a variety of other sources. Our goal is to match the expectation with the experience, shown in Figure 12.2. But unless the individual has been a patient before, he or she will have no true understanding of what it’s like to be in the hospital.

  Figure 12.1 Experience-expectation mismatch.

  Figure 12.2 Matching expectation with experience.

  What patients expect vis-à-vis what they actually experience plays an important role in how they ultimately define or perceive their care. A longtime Cleveland Clinic leader, Joanne Zeroske,8 president of one of our community hospitals, was working with her physicians and nurses to improve patient satisfaction with pain control. She spent time observing two orthopedic surgeons who practiced at her hospital. One surgeon always informed patients that there would be severe pain; he would do everything possible to help relieve it, but he made no promises. The other surgeon told patients he was an expert in conducting a particular procedure and they would have minimal or no pain. Guess how patients rated each surgeon regarding his ability to effectively treat pain? The one who set level and honest expectations had higher scores, with patients more satisfied regarding the way their pain was managed. There’s nothing that truly prepares one for postsurgical pain. When patients are unprepared, or worse, expect not to have pain, they are surprised or disappointed. It’s important for caregivers to explain to patients exactly what they’re going to experience and how pain will be managed.

  The patient bedside nurse call button is another great example that demonstrates the importance of managing expectations. Patients often assume that when they summon the nurse with the call button, someone will respond immediately. I refer to this as the “nurse pop-up response system,” an unrealistic understanding and expectation of healthcare delivery on inpatient units. The nurse is likely taking care of four or five other patients in the typical med-surg unit. Despite the best nurse manager intentions regarding coverage and other tactics to mitigate slow response, it’s never immediately that someone arrives at the patient’s bedside.

  We often believe that patients score us low on surveys for response time because they get angry when we don’t come immediately. But that’s not quite what happens. Imagine you are a patient and push the call button for something relatively simple and nonurgent, like more water. If no one responds quickly to address the request, you don’t get angry because of the service failure; you become anxious and concerned, thinking, “If I only need water and no one comes, what will happen if I have an emergency? Maybe no one will come, and I could die.” Even if the unit secretary immediately answers the intercom and informs you that someone will be in soon, if it’s 20 minutes before the water arrives, you still get anxious because you don’t know what’s going on. There was an appropriate immediate response from the secretary, but you have no idea that the water request may have been triaged, that the nurse or nurse assistant knows about your request, but it was placed as a lower priority. You become angry, believing you were ignored.

  Nowhere is the experience-expectation mismatch potential greater than at hospitals spending tens of millions on amenities to deliver the “Ritz-Carlton experience.” At some hospitals, patients have an expectation that they are coming to a five-star hotel suite. This is unrealistic and nearly impossible to deliver, given the environment in which effective healthcare is delivered. Patients believe they come to the hospital for rest and are upset when nurses come in to check vital signs in the middle of the night or when blood draws happen early in the morning so they are available for medical rounds. Hospitals are not hotels, and we must be careful not to set this expectation. We certainly can do a better job of managing when vital signs are checked, medication is delivered, and lab draws occur, possibly allowing patients longer periods of rest during the middle of the night, but we must be careful to balance this with what’s right for patient care.

  A similar situation exists relative to the hospital quiet-at-night HCAHPS domain. There is a patient expectation that hospitals are quiet places. Some of us remember the Marcus Welby, M.D. television series, in which “quiet” was an essential aspect of the hospital experience. Overlay this with the “Ritz-Carlton of hospitals” analogy. I have news for patients: hospitals today are not Marcus Welby quiet, and they are not five-star hotels. Hospitals are noisy; there’s a lot going on. Thirty years ago hospitals were low-tech, and patients were much less ill. Today, hospitals have patients with much higher acuity demanding more attention. Care is complex, nursing ratios are stretched, and there is a great deal of activity that takes place on nursing floors. They aren’t quiet! We need to inform patients not to expect quiet so they don’t judge us as too noisy when they expect something else.

  If you review the verbatim patient complaints Cleveland Clinic receives about noise, they mostly relate to having a roommate; caregiver activities such as vital-sign checks, blood draws, and so on happening in the night; and loud conversation at the nursing stations. We may be able to reschedule blood draws until the morning, but patients must understand that under most circumstances, the nurses are supposed to come in at 3 a.m. to check vital signs. It’s a hospital, and it’s the nurses’ job to monitor patients’ condition.

  Patients and Families Must Also Be Reasonable

  Like other hospitals across the country, Cleveland Clinic has essentially eliminated specific visiting hours. This means that family and friends can visit patients at any time without restrictions, a move that is consistent with national nursing recommendations and patient standards as articulated by the Joint Commission and the Centers for Medicare & Medicaid Services. Eliminating restricted visiting hours is the right thing to do for patients. We want to ensure that patients’ families and friends are close by to provide comfort and support. I agree with the statement issued by the Institute for Patient- and Family-Centered Care that the family is “respected as part of the care team—never just visitors—in every area of the hospital, including the emergency department and the intensive care unit.”9

  Now that visiting hour restrictions have been lifted, family and friends have a responsibility, however, to be “professional” partners of the care team and to hold themselves to standards appropriate for a hospital. There are certain behaviors and actions that do not pass the test of reasonableness.

  Imagine patients sharing a room:

  1. Is it reasonable that a patient have multiple visitors late at night, potentially disturbing the patient in the next bed?

  2. Is it reasonable that a young female patient have her boyfriend sleep in the chair next to her bed, compromising privacy for her neighbor?

  3. Is it reasonable that family members bring young children and allow them to play in the room?

  4. Is it reasonable that one patient allow family members to eat a meal in the room, while th
e other patient may not be able to eat?

  I hope everyone reading this will agree that these actions are unreasonable. While we lack exact statistics on the number of semiprivate rooms in U.S. hospitals, a figure commonly cited is approximately 60 to 70 percent. This means that most hospital rooms are semiprivate and patients must share a room with a neighbor. We cannot rebuild our entire infrastructure to accommodate private hospital rooms, hence the need for guidelines on visitation.

  We have a responsibility to protect every patient’s privacy. Typically, enforcement of these reasonable visitation standards falls unfairly on bedside nurses. Actions that limit or restrict certain visiting behaviors can lead to a negative patient experience assessment. This is unfair to the hospital. Patients and their families have a responsibility to be considerate. They should apply the same standard we apply: how would they expect to be treated? Consider an analogy from the airlines, which purport to allow each passenger one piece of carry-on luggage and one personal item in the cabin. This standard is rarely enforced; passengers bring multiple items onto the plane, which slows the boarding process and hogs overhead compartment space. Patients, like passengers, need to be reasonable.