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ACADEMIA AND CLINIC

QUALITY GRAND ROUNDS

Series Editors: Robert M. Wachter, MD; Kaveh G. Shojania, MD; Sanjay Saint, MD, MPH; Amy J. Markowitz, JD; and Mark Smith, MD, MBA

A Hospitalization from Hell: A Patient's Perspective on Quality

right arrow Paul D. Cleary, PhD*

7 January 2003 | Volume 138 Issue 1 | Pages 33-39

Patients usually cannot assess the technical quality of their care; however, examining a hospitalization through the patients' eyes can reveal important information about the quality of care. Patients are the best source of information about a hospital system's communication, education, and pain-management processes, and they are the only source of information about whether they were treated with dignity and respect. Their experiences often reveal how well a hospital system is operating and can stimulate important insights into the kinds of changes that are needed to close the chasm between the care provided and the care that should be provided.

This article examines the case of a patient admitted for ankle arthrodesis due to severe hemophilia-related arthritis. The surgery was successful, but the hospital stay was marked by inefficiency and inconveniences, as well as events that reveal fundamental problems with the hospital's organization and teamwork. These problems could seriously compromise the quality of clinical care. Unfortunately, most of these events occur regularly in U.S. hospitals. Relatively easy and inexpensive ways to avoid many of these problems are discussed, such as reducing variability in non-urgent procedures and routinely asking patients about their experiences and suggestions for improvement.


"Quality Grand Rounds" is a series of articles and companion conferences designed to explore a range of quality issues and medical errors. Presenting actual cases drawn from institutions around the United States, the articles integrate traditional medical case histories with results of root-cause analyses and, where appropriate, anonymous interviews with the involved patients, physicians, nurses and risk managers. Cases do not come from the discussants' home institutions.

The patient, Mr. Q., and his wife, Mrs. Q., were interviewed by a Quality Grand Rounds editor on 4 October 2000. The hospital's Director of Nursing was interviewed by a Quality Grand Rounds editor on 23 October 2000. The hospital's Chief Executive Officer was interviewed by a Quality Grand Rounds editor on 7 November 2000.


The Case
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Mr. Q., a 50-year-old man with hemophilia, was admitted to a university hospital for ankle arthrodesis due to severe hemophilia-related arthritis. The operations manager of a metropolitan transit system, Mr. Q. had been a patient at the university's hemophilia clinic since moving to the area 5 years previously. The surgery was successful, but Mr. Q's hospital stay was marked by inefficient clinical care and numerous inconvenient and unpleasant interactions.

Mr. Q experienced sharp pain in his right ankle and difficulty walking, and his orthopedist recommended surgical fusion of his right ankle in July 2000. The morning of the surgery, Mr. and Mrs. Q. arrived at the surgical check-in center at 6:00 a.m., as directed, and found approximately 100 patients and family members in the preoperative waiting area.

Mr. Q.: The whole room was full. There was an overflow into the main waiting area by the door, with one person checking us all in. Then, all of a sudden, it was time, and [they started] hauling this big group around. There must have been 10 elevator-loads of us—we got up to the floor, signed in, and they just threw you into your little cubicle, told you to get undressed, and then all of a sudden, it starts happening. The only thing we were worried about was getting factor VIII because the hematology nurse coordinator doesn't get to work that early. She had told us well in advance, "Make sure they give you the factor before they put you out."

The available clinicians, an operating room nurse, and the anesthesiologist appeared to be unfamiliar with the procedure for mixing the factor, so Mr. and Mrs. Q. directed the process.


The Admission and Surgical Experience
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Unfortunately, poorly coordinated hospital care is not unusual. Recent data indicate that more than one fifth of patients hospitalized in the United States reported hospital system problems, such as poor organization of the admission process, staff not knowing which physician is in charge of the care, tests and procedures not being done on time, and staff providing conflicting information. Surveys in Germany, Switzerland, and the United Kingdom indicate similar problems (1).

Waiting with 100 people and being herded about probably did not have a negative effect on the outcome of Mr. Q.'s ankle surgery. On the other hand, this experience was unnecessary. Simple strategies, such as staggering admissions, could reduce crowding in the waiting room and the amount of time that staff devote to confused patients. More important, the fact that Mr. Q. was scheduled for surgery at a time when a hematology nurse was not available indicates a lack of coordination that could have had an important effect on the outcome of his hospitalization. The best predictor of care quality is expertise and experience, particularly for complex or highly specialized care (2-8). Appropriate administration of factor VIII before surgery was critical, and this hospital system was not designed to address the issue adequately.

Hospitals can develop systems that anticipate and accommodate patient needs (9-11). Systems can ensure that appropriate personnel are available and provide critical decision support. For example, the primary care physician could indicate any special medical needs on an admission request that would be entered into the scheduling system to ensure that an appropriately trained clinician is available. At the Mayo Clinic, patient age, sex, functional status, and other clinical information are incorporated into the scheduling system (12). Such a system helps anticipate the needs of patients such as Mr. Q.


The Case, Continued
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Mrs. Q. watched as Mr. Q. was wheeled to the operating theater, on schedule at 7:20 a.m. In the surgical waiting area, family members read magazines, watched the one television, and awaited the call that surgery was complete. At about 9:30 a.m., Mrs. Q. was notified that Mr. Q. was out of surgery. After 2 more hours, Mr. Q. still had not been assigned a room on the orthopedics ward. Mrs. Q. left the hospital to take care of some things at home and returned to the waiting room at about 1:30 p.m. At 2:00 p.m., she managed to talk her way into the postoperative recovery room, which she described as being "like the set of M*A*S*H, crowded, with hordes of people." Yet she was reassured, as "a wonderful nurse" was taking care of Mr. Q. There was still no room available.

Mr. Q.: The nurse was [joking around] and actually saying [to a colleague in charge of bed control], "I'll pay you 50 bucks [for a room]—I gotta get him outta here."

Finally, at about 3:30 p.m., a hospital room was assigned on the internal medicine floor, not the orthopedics floor. When Mrs. Q. arrived at the designated room, it was vacant. She wandered the ward and, finally, found her husband.


The Postoperative Experience: Operational Problems
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Just as the crowded and disorganized admission process probably did not affect the clinical outcome of Mr. Q.'s treatment, making Mrs. Q. wait for several hours and sending her to the wrong floor are unlikely to have affected Mr. Q.'s clinical status. However, the delays in finding Mr. Q. a room and the inability to place him on the most appropriate floor reveal operational problems that could have affected the quality of clinical care.

Mr. Q.'s assignment to a less-than-optimal floor was undoubtedly a result of unanticipated bed demand on the orthopedics floor. Such variation in hospital demand regularly results in problems with bed availability on the general ward and in the intensive care unit, as well as emergency department diversions (13, 14).

Many assume that variability in bed demand is primarily due to unanticipated admissions and surgeries, but scheduled procedures often account for more variation than unscheduled admissions (14, 15). One solution to unpredictable demand is to reduce the day-to-day variability in elective admissions (13, 15). When this is done, variations in unanticipated admissions are less disruptive. Operations researchers (16) have developed models that can suggest the best number of scheduled admissions to allow when there are fixed resources (such as beds) and fluctuating demand. Such strategies could improve the quality of care by making staff needs more predictable (13, 14). Unfortunately, these techniques rarely have been applied in health care (13, 17).

With a highly specialized problem such as hemophilia, it is crucial that staff with appropriate experience be involved in the patient's care throughout the hospital stay. Staff do not have to rely on specialists to provide care directly. This might unduly fragment the care of patients with many problems. Generalists with appropriate experience can provide high-quality care (4), and collaborations between generalists and specialists can result in quality of care that is comparable to that provided by specialists (2, 18, 19). If a patient must be placed on a floor where nursing staff are not experienced in the type of care required, the system should ensure that nurses and physicians with the necessary expertise consult regularly (2, 18). No matter which solution a hospital chooses, the hospital should anticipate and plan for the need.


The Case, Continued
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Mrs. Q.: I think one of the most egregious things was this annoying light over the bed. One of the cleaning ladies was walking by, [Mr. Q.] rang and asked, "Can you turn the light off?" She said, "It's not my job," and proceeded to push the nurses' call button. Twenty minutes later, the nurse had a chance to tend to him and he said, "I just wanted the light turned off." ... Either there are just too many patients or the level of staff interested in doing a job is just simply not there.

Hygiene was also an issue because no one offered to bathe Mr. Q. between Monday afternoon and Wednesday morning, even though he was diaphoretic and feverish the first night. Moreover, the linens were never changed and the room was not cleaned during the several days of his stay.


Further Evidence of Teamwork Failures
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The light episode and dirty linens are more than an inconvenience. Mr. Q. was a systems operations manager. Mr. and Mrs. Q. may have told these stories because they understood that the problems were indications of pervasive system failures and lack of teamwork (10) that could lead to serious negative consequences. Studies of "high performance" work systems suggest that strategies such as teamwork and decentralized decision making can facilitate flexibility, innovation, and quality improvement efforts (20, 21). In health care, communication and coordination are related to better outcomes (22-26). Redesigning work processes, redefining staff roles, implementing systems to facilitate team communication, and providing better information systems can substantially improve quality (27, 28).

There are also simple solutions to the inefficiency and confusion that led to the light being left on and using a nurse's time to address a minor request. Mercy Hospital in Oregon, for example, trained ward clerks to know the appropriate person to respond to any problem, and such clerks are available 24 hours a day. When a problem arises, a clerk can alert the appropriate person since all personnel are required to wear beepers (12). At Baptist Hospital in Florida, when an employee interacts with a patient, the employee asks whether there is anything else that he or she can do and adds, "I have the time." This strategy led to a dramatic drop in call-light use. (Edgman-Levitan S. Personal communication.)


The Case, Continued
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Mr. Q. was accustomed to taking a great deal of pain medication and needs unusually high doses for adequate analgesia. Despite his request during his first postoperative night to increase the level of analgesia, it was not until the next morning that a pharmacology resident responsible for pain management arrived and new medications were provided at effective doses.


Pain Management
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Mr. Q. had to wait an inexcusable period for adequate pain relief. We have known for decades that pain is often not adequately recognized and managed (29-32), but improvements have been slow (33). A survey of U.S. hospital patients found that about 11% had moderate or severe pain that could have been eliminated by prompt attention (34). In a recent study of hospital care in five countries, patients in U.S. hospitals reported the highest frequency of problems with physical comfort, including pain management (1).

Although improving pain management probably will require better clinician training (35), involving patients in this aspect of their care might yield positive results. Clinicians may have different perceptions of adequate pain control than do patients (36), and routinely asking patients about their experiences might help reduce these dissonances. Directly involving patients in the delivery of pain medication (for example, with patient-controlled analgesia [PCA]) can result in better pain control without an increase in adverse effects (35, 37). Proper pain management, one of the fundamental aspects of patient-centered care (Table), can result in better outcomes (38, 39).


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Table. Dimensions of Patient-Centered Care

 


Reduced Human Resources
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Director of Nursing: The public needs to be aware that there is a major nursing shortage ... that is reaching public health crisis proportions ... . I think that [nurses] ... are working really hard ... . Pressures are such that people are pushed beyond what is doable and what they think is safe. It's interesting that patients' perceptions of what health care should be have not declined. In fact, I think they have increased. Meanwhile, the insurance companies come to big organizations like ours and drive down the price they are willing to pay us. We are very close to not being able to continue to provide [highly satisfying care] because we simply can't cover those costs any longer.

The Director of Nursing explains that cost pressures and understaffing (40, 41) have made it harder to provide care; such problems may have led to the deficiencies in Mr. Q.'s hospital stay: inability to get a light turned off, poor hygiene, dirty facilities, and poor pain management. Cost pressures have led to lower nurse-to-patient ratios, and staffing levels are related to the quality of care (42-47). There is so much concern about this issue that California may mandate minimum ratios of nurses to patients (41). Although it might be desirable to have more nurses for patient care, this might not have guaranteed that Mr. Q.'s light would have been turned off sooner. The staff increase needs to be accompanied by a fundamental reorganization of the way staff work together to ensure that they meet patient needs. Some hospitals have restructured only to find that their nurses were spending even less time providing care and comfort for patients and more time doing documentation, care planning, and administration (48). Revising work roles and processes and modifying facilities in one Pennsylvania hospital improved satisfaction, quality, efficiency, and costs of care (27). The University of Illinois Medical Center began implementing a paperless medical record in 1995. This has allowed them to "reallocate" $1.2 million of nurses' time away from manual documentation. Unfortunately, fewer than 10% of hospitals have such systems (49).


The Case, Continued
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Mrs. Q.: [Recalling Mr. Q.'s previous hospitalization 2 years before] The discharge process was so confusing. Before we could be discharged, we needed to make sure that we had the prescriptions ... [and] that the physical therapist had given the approval because we needed a wheelchair ... . Unless you know how to push the right buttons, and really be, if not assertive, then downright aggressive, you are going to just lie there for hours.


Discharge Services: Continuity and Transition
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The word "discharge" is an apt metaphor for how many hospitals treat their patients when the hospital stay ends. Rather than establishing a smooth transition to home and other systems of care, hospital personnel often focus on getting the patient "out of the house." When asked about their hospital experience, patients typically report the most problems with continuity and transition (1, 34). A national study found that 30% of recently discharged patients said they had not been told about important side effects of their medications, 27% said they were not told what danger signals to watch for at home, and 24% said they were not told when they could resume normal activities (34).

Increasing use of hospitalists to provide care (50, 51) has led to a heightened interest in continuity between inpatient and outpatient care. Suggestions for maintaining continuity include increased telephone contact between the involved clinicians and between clinicians and patients (52); faxing progress notes to primary care providers; and visits to hospitalized patients by primary care providers, even when hospital care is handled by a hospitalist (51, 53). Such visits and contacts can reassure patients (54), while improving both communication and continuity of care.


Improving the Experience: Patients Are the Best Source of Suggestions
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Mrs. Q.: The chaos ... [was] absolutely horrific. It might have been helpful to have videos of the preop procedure, explaining the kind of things you might expect, or providing materials in written form. As part of the video, provide some explanation that a waiting time of X hours is not unusual ... There should be absolutely no question that rooms need to be adequately cleaned, the patient needs to be bathed, the linens need to be changed regularly.

Patients are an excellent source of ideas on how to improve care. A video presentation about the admission process could have provided information effectively and efficiently. Such an approach with patients also can have a range of beneficial effects, such as reducing the distress associated with procedures (55, 56) and reducing length of stay.

Partners of hospitalized patients most frequently report problems obtaining emotional support and also relate dissatisfaction with discharge planning, family participation, communication, and education (57). A video would not provide all the emotional support needed, nor would it provide all the information that family members need to assist recovery. However, providing information in the waiting room would be an easy and effective way to relieve some family concerns and, perhaps as important, signal the hospital's recognition of the need to provide family members with information.


The Case, Continued
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Mrs. Q.: As far as the hospital rooms, blow them up and start again.

As described by Mr. and Mrs. Q., the hospital room and much of the equipment in it were substandard. It was a struggle to raise the bed to elevate Mr. Q.'s leg, and the bed fell immediately after Mr. and Mrs. Q. managed to raise it. Electrical equipment was duct-taped to the wall. The telephone was situated such that each time Mr. Q. reached for it, he knocked it onto the floor. The room was hot and the windows barely opened. Mr. Q. explained, "The only thing that came out efficiently, other than the fact that the doctors were terrific, was the bill: The bed doesn't work, and the phone is on the floor, for $1600 bucks."


Service or Systems?
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Many of these infrastructure problems are related primarily to comfort, but it is likely that Mr. and Mrs. Q. are also concerned with what these problems say about how the hospital is run. Patients will complain about poor food and facilities (58), but if asked about care quality, they rarely mention amenities (59). Rather, they focus on issues such as being given appropriate and timely information, knowing who to ask about clinical concerns, shared decision making, and receiving information on managing their condition (34, 59, 60).


The Case, Continued
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The Hospital's Follow-up

After discharge, Mr. and Mrs. Q. wrote to the hospital's chief executive officer (CEO) to describe their experience. The CEO personally responded by e-mail, and Mr. Q. received three or four additional follow-up telephone calls from various staff members.

CEO: When issues come to me I try to always make sure that I respond to people, or there is a prompt response on my behalf. In the course of that response, I will usually copy others, and ask for responses ... . Occasionally I call patients and ask them more details about their issue, which has a very profound effect ... . But I also make sure that we are trying to solve the problem.

The CEO then described how decisions are made about scarce resources that must be divided between strictly clinical measures and service improvements:

CEO: How do we prioritize between improving the look of a waiting room versus buying a piece of equipment ... . Those choices aren't easy. We have historically tried to do both, but increasingly we must get the clinicians involved in helping to make those choices ... . We are in a special kind of service business; it is the most intimate of service businesses and with that intimacy goes special obligations and responsibilities. Not only do we need to be doing the best that we possibly can clinically, and always be working to improve that, but all of these other issues around service are just as important to patients, and really make up the totality of their experience here.


The Hospital's Response
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The hospital now sends a questionnaire to every discharged inpatient and a large sample of outpatients and carefully reviews patient correspondence. It has made the preoperative holding area more patient- and family-friendly. The hospital is also considering a plan to bring patients to the preoperative holding areas in smaller groups or possibly individually. In addition, the hospital has undertaken a major project to construct new intensive care units, remodel operating room suites, and order new furniture for patient rooms.

CEO: Many people coming to our hospital, knowing its reputation, are probably disappointed, saying, "My God, this is a great institution, but this is the state of some basic equipment?" I often feel that people use surrogates to measure quality and so, probably lurking in the back of their minds [is the thought],"If this bed is broken, what's the state of the anesthesia equipment?" The health care economic system has pushed us to optimize staffing, but the optimization of staffing does not translate into an optimization of experience for patients.


The Hospital's Core Mission
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The CEO's responses and comments highlight several issues. First, the rapid and detailed attention to Mr. Q.'s case argues that most care problems are not the result of bad people or motives but rather of faulty systems. Mrs. Q. commented on the "wonderful" intensive care unit nurse, Mr. Q. noted that his doctors were "terrific," and both were impressed by the attention they received from the CEO.

Second, important improvements can be based on patient feedback. In addition to responding to complaints, hospitals can gather important information about care experiences through routine surveys (34, 59, 61-63). The Centers for Medicare & Medicaid Services (formerly the Health Care Financing Adminstration) has announced that it will develop a standardized, public domain survey about patient experiences that can be used by all U.S. hospitals. Analyzing and responding to such information will greatly decrease the likelihood that other patients have experiences similar to those of Mr. Q. Follow-up interviews or focus groups with selected patients can provide important information about the system's functions and yield suggestions for improvements.

Third, the CEO's well-intended remarks reveal a common tendency to view such problems as "service quality." Although there were abysmal failures in service, Mr. Q.'s experience provides disturbing evidence about system failures. It is laudatory that the hospital plans to develop waiting rooms that are more attractive and to order new beds, but new facilities alone will not address the fundamental issues raised by this case.


Conclusions
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The core mission of hospitals is to meet patients' needs. Patients need to be treated with dignity and respect and feel confident that procedures are designed to optimize safety and outcomes. Patients have an important and unique perspective on how well hospitals are run. No medical record or administrative data would indicate that Mr. Q.'s admission process was chaotic. He and his wife observed and described numerous instances of poor coordination, poor communication, and lack of sensitivity to Mr. Q.'s needs that could have had devastating consequences. Other issues that Mr. Q. reported, such as poor pain management, also indicate lapses in attention to patient needs that reflected fundamental problems with his care.

Everyone in a hospital needs to understand that inefficiencies, inconveniences, and breakdowns in processes of care are not inevitable but rather are consequences of the way the hospital is organized and run. In addition to signaling that he cares a great deal about "service," the CEO needs to convey to all staff that it is a priority to redesign their parts of the system to meet patient needs, including the provision of safe and effective care. In addition, staff should be given tools to test their ideas for improving care (9, 64). Such tests should include routine queries of patients about care experiences. By acknowledging that the experiences of this hospitalization and the functioning of the system are unacceptable, and by relying on the observations and insights of patients such as Mr. Q., the physicians and staff will be able to close the gap between Mr. Q.'s experience and what they can achieve.


Questions and Answers from the Conference
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A Nurse: Dr. Cleary, you alluded to the fact that there are answers to some of these problems, such as technological solutions to the nurses' paperwork issue. If that is common knowledge, why is it that hospitals don't access the answers?

Dr. Cleary: I don't know. Don Berwick [an expert on quality improvement] will tell you that he has not yet seen a medical organization that has truly transformed itself the way a number of other industries have. One answer is that we haven't had to ... until very recently there hasn't been a sense of impending catastrophe.

Dr. Robert M. Wachter, Quality Grand Rounds editor: We see more and more boutique practices and hospitals that are marketing themselves as doing "the patient experience thing" very well. Looking at the airplane analogy they say, "maybe what hospitals need is to have a ‘first class,’ for which you pay some extra money for some fancy features and nice phones and freshly painted walls, and then you have ‘coach.’ They all end up at the same place, the safety is the same, but the amenities are different." In a system that does not have enough dollars to do everything, what do you think of that concept?

Dr. Cleary: I think this boutique issue is a red herring; an epiphenomenon. Ask anyone in this room: If you knew there was serious variability in airline safety, would you go to the one with better food, better seats, or better service? No. If you thought there was a hospital with better quality, would you go to the one with better rooms? No. I think there hasn't been competition on quality. That should be our first focus. I think that it is fine if there are two-tiered systems in terms of amenities. People are willing to pay for extras. But that's a completely separate issue from the fundamental issues of consistent quality and performance.

A Physician: You mentioned a discrepancy between academic and nonacademic hospitals. What are the specific areas in which academic hospitals are not doing as well as community hospitals, and how can we get there?

Dr. Cleary: The Picker Survey assesses dimensions of care, such as information and education, continuity of transitions, and comfort, which includes pain management and so on. When you look at the total Picker score, academic health centers do worse. If you look at the different dimensions, academic health centers actually do well on some. For example, on pain management, they do as well or better. In education, they often do as well. The one area where they tend to do the worst is care coordination or discharge and continuity. I often do focus groups with physicians. I say, "Think about the care you provided last week and think about an instance where you thought the care was substandard." Every one of you will come up with an example. Sometime it will be very technical, but most of the time, it is not. It was a hand-off between the attending and the resident or the resident and attending, or it was a problem with communication. If I were to ask you for ideas on how to fix it, most people would come up with examples. If you actually bring patients in the room—if you bring in Mr. and Mrs. Q.—they have some very good ideas about how to make these things work better and how to coordinate care.

Dr. Mark Smith (Moderator), Quality Grand Rounds editor: Dr. Cleary said earlier that he has never met a clinician who didn't want to provide high-quality care and I've never met a hospital administrator who didn't want to run a high-quality institution. Mr. Laret, do you have a comment?

Mark Laret, CEO, UCSF Medical Center (site of the Quality Grand Rounds Conference): One reason that hospitals haven't made changes is that hospitals have been run—the whole health care industry has been run—like a cottage industry, and it's been designed around provider interest rather than around patient interest. The big failing of the airplane analogy is that in the hospital, if we were in the airline business, we would have 80 people in the cockpit making course corrections all the way through, trying to figure where we are headed and hoping that things would work out. I completely agree that quality has to be the very first issue for all of us.

A Physician: A lot of the things we talked about in terms of quality measures look at subjective interviews and focus groups and things like that. For example, I would think that if you wanted to compare academic centers with community centers, one thing you would do is find some sort of objective correlates. Instead of measuring whether patients feel that the nurses took care of their needs, you might measure the time from when they buzz their buttons to when the nurses come, or the ratio of nurses to patients. These things would be a lot more dependable and would give you many more suggestions of how you can improve.

Dr. Smith: The California HealthCare Foundation has been involved in publicly supporting quality, and we define quality as clinical, technical quality (which is what professionals tend to think of as quality), but in addition to that dimension, there are some aspects of real quality that all of us would agree on, that can't be measured by looking at the medical record. The only way to get the information is to ask patients. We all think that being treated with dignity and respect by our providers is a real aspect of the quality of care. There is nothing that will give you the answer to that, you have to ask the patient. We don't yet have the capacity to measure technical outcomes of hip surgeries that I hope we soon will have, but we can ask people who have had hip surgeries, "Did you know where to go for follow-up? Do you know when you can resume exercise?" My plea is that these things are not mutually exclusive, they are complementary.


Author and Article Information
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From Harvard Medical School, Boston, Massachusetts.

*This paper was prepared by Paul D. Cleary, PhD, for the Quality Grand Rounds series. Kaveh G. Shojania, MD, prepared the case for presentation.

Grant Support: Funding for the Quality Grand Rounds series is supported by the California HealthCare Foundation as part of its Quality Initiative.

Requests for Single Reprints: Paul D. Cleary, PhD, Department of Health Care Policy, Harvard Medical School, 180 Longwood Avenue, Boston, MA 02115-5899; e-mail, cleary{at}hcp.med.harvard.edu.


References
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