Finding a Balance
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Most medical decisions 25 years ago were made almost exclusively by the physician, with very little input by the patient. Since then, changes in the American health care system have shifted to involve the patient more actively. There is a realm of medical decisions that are straightforward, such as determining what blood tests to order for a diagnostic workup or how to treat a broken bone. But when it is necessary to select the best option for a particular patient among a number of reasonable choices-that's when the physician needs to elicit the patient's opinion and preference, and that's when shared decision making is critical.
According to the latest report from the Institute of Medicine (IOM), Crossing the Quality Chasm: A New Health System for the 21st Century, "The ultimate test of the quality of a health care system is whether it helps the people it intends to help." The report suggests that the quality chasm between the health care we have and the health care we can have is due in part to patients having to accommodate the customs and procedures of health care organizations and professionals rather than receiving services designed to focus on their needs and preferences. Closing this gap, however, has to occur in increments. Before the old order can evolve, new procedures and processes have to be designed and substituted. A shift in attitude also has to take place-on the part of the providers and consumers as well as the third-party payers.
Shared decision making is a much broader concept than informed consent. The informed consent statements that patients are asked to sign only indicate that the patient has been thoroughly informed as to the potential benefits and harms of the planned procedure(s) and has agreed to proceed with treatment. Shared decision making suggests a mutually respectful exchange that recognizes the individuality of the patient and a process in which responsibility is divided between the patient and physician.
Areas for Improvement
The IOM report cites specific goals of improvement that are being emphasized to bridge the quality chasm: safety, effectiveness of services, patient-centered care, timely treatment, efficient use of resources, and equitable quality of care.
Shared decision making is part of patient-centered care. Assessment tools to gauge patients' experience of care have included formal instruments such as the Consumer Assessment of Health Plans Survey (CAHPS). These tools have formed the basis for health care organizations to identify opportunities for improvement.
The IOM report attempts to focus on which factors promote more effective ways to achieve clinician-patient partnerships. For example, in addition to a safe health care environment, ensuring patient safety requires patients who are informed and participate in their care to the extent that they wish and are capable. Effective care is based on the use of systematically acquired evidence to determine if an intervention results in outcomes that are better than the available alternatives-including doing nothing. Also, the needs, values, and expressed preferences of individual patients are responded to with compassion and empathy.
As Christine Laine, MD, MPH, Senior Deputy Editor, Annals of Internal Medicine, found in her research on patient-centered medicine at Jefferson Medical College in Philadelphia, patients are taking a more active role in their care than previously. They want to know not only their diagnoses but also details of the disease process, the available treatment options, and prognosis. "I think that one of the drivers of this interest on the patients' part is a sort of general consumerism," she said. "People feel that they have to be better informed and make more autonomous decisions about everything that they do, and medicine and health care are part of that whole movement of being educated consumers. "Also, the fact that there are so many options and often not one best answer or one best strategy for treatment. As options open up, I think that both the patient and the physician realize that there are no definitive answers. The evidence isn't always clear, for example, that this drug is going to be the best drug for this patient, or that surgery is going to be better than having balloon angioplasty or a stent or staying on medications. When there are more options and higher levels of uncertainty, there is a drive from both the physicians' and patients' perspectives to involve patients in deciding what is the best choice for the individual.
"Then I suppose," Laine said, "the medical-legal climate also generates some of this activity. When there are more options and more uncertainty, physicians may feel as if they are protecting themselves from liability if patients have some input into deciding between a number of imperfect options."
According to her research, sharing information with patients empowers the patients to make rational decisions about their own health. "A growing body of evidence," Laine found, "suggests that patients who actively participate in their own care have more favorable outcomes." Also, the results of participation suggest even larger benefits. "Patients who take increased responsibility for their health may have more appropriate demand for health services," she said.
Helen Darling, President, Washington Business Group on Health-a membership organization of predominantly very large employers based in Washington, DC-found that patient participation produced similar results. "Patients who are more knowledgeable and involved in their treatment are going to do better. For example, if they undergo surgery and they are more involved in their care, they could have a faster recovery because they are more likely to do what they need to in terms of self-care or taking medication appropriately. Research has shown that an informed, active patient does better in every way than one who is not," she said.
"I think that shared decision making has a very positive effect," Darling said. First of all, we know that more knowledge, involvement, and action on the patients' part are positive factors. Even if patients have a terminal disease, their quality of life in the last months is going to be very much affected by having accurate information about their course of illness. If people know, for example, that some additional tests or procedures are not going to affect their outcome and may in fact be painful or diminish their last months, they are much more likely to choose a peaceful route than not," she said.
"People very often make really good decisions when they know everything that is happening and they can figure it out for themselves," Darling said. "For the most part I have a good deal of faith in people to make appropriate choices."
Need for Tools
The ability to understand the necessary clinical information to make informed choices, however, can be time consuming and difficult. Kate Lorig, RN, DrPh, Director of the Stanford Patient Education Research Center, and Associate Professor of Medicine, Stanford University School of Medicine, Palo Alto, California, has been actively studying how to prepare patients with long-term and chronic illnesses to manage their disease on a day-to-day basis. "They ultimately have to make the choices of what they are going to do," Lorig said. "It doesn't mean that they don't work with the health care professionals or that they don't work within the health care system, but on a daily basis they have to make those decisions and work with their physicians. Unfortunately, today they also have to be the carriers of information between physicians. So it is to prepare them for those roles."
As Lorig's research disclosed, when acute care was primarily the cause of patient illness, patients were mostly inexperienced and passive recipients of medical care. But now, with chronic disease as the principal medical problem-responsible for nearly 70% of health care costs-the patient needs to become an active partner in the process. In this way health care can conceivably be delivered with greater efficiency and effectiveness. The keys to effective management, Lorig found, are understanding the various trends in the illness patterns and being able to use self-management tools such as problem solving to accommodate daily life to the disease course. The goal is not a cure of the disease but the maintenance of enjoyable and independent living, to the greatest extent possible.
"Strangely enough, age, education, and socioeconomic status make very little difference," Lorig said. "We have found that we can prepare almost anybody to be responsive partners in their own care. Those other factors are not as important as we once thought. What is important is that the patient education be culturally relevant. For example, our course for Spanish speakers was developed in Spanish and is a different program from our English program. Also, our programs were all based on patient-perceived problems. So rather than being formed from what health professionals think patients ought to know, we started with what patients perceive as problems. Then, within that context, we give them the content for what they need to know to manage their disease.
"For example, patients will tell you that a major problem is fatigue or pain. So then, we will teach them about exercise and how exercise can help both pain and fatigue and how they can judge how much exercise they do based on certain pain symptoms.
"One of the things that we try to do is to get patients to understand that they have to be the carrier of their own information. As much as we would like physicians to talk to each other and to read each other's charts, very often that does not happen. So the patient has to be informed in such a way that they can say, for example, Dr. Jones, here are all of my medications, or Dr. Smith told me this, or I just had a CT scan last week and this is where I had it done," Lorig said.
"Usually," she continued, "we teach patients that they cannot assume that information moves from one physician to another. It depends on the system. Those with good information technology have less of a problem than do systems with poor technical systems. And when you change health care systems, it is always a problem."
As Darling noted, everyone needs what she refers to as a medical home. It is very clear from consumer research that one of the biggest problems in the health care system today is the fact that there are multiple specialists who do not talk to each other. Often no one person is really in charge. Consequently, both the patients and their families get information from different "silos," without an overview, which can be confusing.
"Shared decision making can improve that," Darling said, "if all of the information can be in one place, with one person coordinating it. Patients need someone who knows them well enough and can help steer them through the complex system. Otherwise, patients have no one they can consult with when they have questions about their care or opinions on how good some new product might be for their situation. It helps to have a relationship with a physician.
"I don't know of any research or expert in the field who doesn't believe that it is extremely important for all people to have at least one physician who is enough of a generalist, either in internal medicine or pediatrics or family practice, who can help individual patients steer themselves or be steered through the system. A physician in that capacity has that kind of overview," Darling said.
Laine has found that patients select a physician as primary provider in different ways. "Sometimes it's a specialist and sometimes it's a generalist," she said. "If there are many doctors involved in a patient's care, some patients will go to the generalist to help them sort through all kinds of issues. Other patients, however, will gravitate to the person they perceive to have the highest rank among the team of providers. So the most subspecialized person will be the one with whom the latter patients will want to be compliant.
"Personally, I think that it is the primary care physicians who have the training and clinical culture who are much more attuned to talking over a variety of problems with patients. Their training definitely includes attention to shared decision making; I'm not sure that it is the same in the specialty physicians' world."
The Importance of the Message
As a Picker Commonwealth Scholar at Thomas Jefferson Medical College, Laine reported on research conducted on the quality of care for patients with chronic conditions. She interviewed about 800 patients after their visits with primary care physicians to determine if the patients had received basic information such as their diagnoses, what medications they are supposed to take, when they were supposed to return for a follow-up visit, and whether they were supposed to go for additional testing.
"That work," she said, "uncovered very basic problems. We didn't even ask, for example, if their diagnosis was congestive heart failure, what that meant or what was the prognosis or its implications. The goal was to find out, if the patients had enough information so that if they ended up in an emergency room in a distant place with none of their medication bottles and none of their medical records they would be able to tell those doctors about their medical needs."
Both groups of patients were seen by primary care internal medicine physicians in a hospital-based practice. One was the faculty practice, which generally had more insured, better-educated patients, and one was the residents' practice, largely composed of an uninsured or Medicaid insured, less socioeconomically advantaged population. According to Laine, "Some people thought that the patients in the residents' clinic were going to perform much worse because the doctors were less experienced.
"We found that what level of training the doctor had didn't really have any relationship to the levels of information that the patients went away with." Laine said. "Older patients, less educated patients, and men tended to leave the clinic with less good information. They were more likely to not be able to tell you what their medications were, what their diagnoses were, or when they were supposed to return for the next visit.
"If you review the literature about what patients want to know and whether they prefer shared decision making or having the doctors tell them what to do, the picture is not clear. It's probably less likely for older individuals or those less formally educated to want to participate in shared decision. But I think that the patient's personality is also a big factor and that assumptions cannot be made just on perceived demographics."
In the chronic disease-management programs that Lorig develops, breaking down the message is crucial to patient understanding. "Once we know what the kinds of problems the patients are having, we go to health professionals and ask them to provide some key messages. For example, 'If you can only teach a diabetic patient 5 things about food, what would those be?' or, 'If you look at the general population with chronic illness, and you can only teach them 5 things about exercise, what are they?' So we don't use a lot of messages, but the ones we use carry important messages that have been selected very consciously. We have found that it is possible to achieve excellent results if people can be given the information that they need to make informed decisions and judgments as very simple messages."
Alternative Communication Systems
Time is a major consideration in creating physician-patient relationships. Patients who have been seeing the same physicians for a number of years have built relationships with them. Yet time is also one of the critical aspects of the current health care system that can be curtailed in patient visits. Both physicians and patients become frustrated with trying to review too much information in short spurts of time.
Although the dialogue between the doctor and the patient provides the ideal decisionmaking tool, having the opportunity and the setting to talk about the diagnostic or therapeutic plan is not always possible for all health care encounters. Fortunately, a variety of adjunctive tools are available for very specific questions. For example, a patient with prostate cancer who is trying to decide whether to adopt a wait-and-see approach or choose radical surgery can view an interactive CD ROM. Often a skilled and specifically trained nurse sits with the patient to facilitate the process. These programs are increasingly being made for a variety of decision-making situations, but don't work for all kinds of situations.
One of the features that Lorig's chronic disease management programs emphasize is teaching people how you find their own resources. They learn how to use toll-free telephone numbers, for example, and how to locate social agencies as well as programs through local community centers. In fact, the local community center is where the disease-management program goes for outreach efforts, especially in Spanish-speaking areas.
Another piece of the program is the use of patient groups with peer leaders, who serve as models for the patients. The peer leader is someone who really knows what the patient is experiencing because they have gone through the same thing. Patients will tell things to peer leaders that they won't tell their physicians. (For further information about the Stanford Programs, see www.stanford.edu/group/perc.)
Darling finds it surprising how many otherwise educated people are still not aware of some of the information resources that are freely accessible to Internet users. "I think that services like MEDLINE Plus should have a consumer's version, not at a talk-down level. While it is true that a lot of people need information translated to a grade school level, there are also a lot of people who don't.
"Sometimes in a family setting a few members who have a higher level of education become the translators for other members of the family," she said. "I think having more sources of information that is written for a lay public but at a higher level is needed. If people knew that the source was reliable and that it was focused on the kinds of problems that real people have, then it would be very helpful.
"Of course the patient still needs the physician's support, but the physician doesn't have to start from the very beginning. If patients can get a lot of basic information during the treatment process, it would be helpful not just to have an understanding but also to enable them to ask the right questions-and understand the doctor's answers. It's really a twoway process that is made better by the fact that the patient is reading and gathering information, but also having a discussion with the doctor. It's synergistic."
The concept of shared decision making is closely aligned with a strong movement in this country for a consumer-driven and patient-centered health care system. A consumerdriven health care system requires greater investment in both the research and the tools of shared decision making. If better resources are available to consumers, the more help they have, which in turn makes the decision-making process better and produces enhanced results for the health care system.
Selected References
Agency for Healthcare Research and Quality. Patient-centered care: Customizing care to meet patients' needs. National Institutes of Health, Program Announcement No. PA-01- 124. July 31, 2001.
Committee on Quality Health in America: Institute of Medicine. Crossing the Quality Chasm: A New Health System for the 21st Century. Washington, DC, National Academy Press, 2001:39-60.
Coulter A, Entwistle V, Gilbert D. Sharing decisions with patients: is the information good enough? BMJ 1999; 318:318-22.
Holman H, Lorig K. Patients as partners in managing chronic disease. BMJ 2000; 320:326-27.
Laine C, Davidoff F. Patient-centered medicine. JAMA 1996; 275(2):152-56. Lorig KR, Sobel DS, Stewart AL, et al. Evidence suggesting that a chronic disease selfmanagement program can improve health status while reducing hospitalization. Medical Care 1999; 37(1):5-14.
Quill TE, Brody H. Physician recommendations and patient autonomy: Finding a balance between physician power and patient choice. Ann Intern Med1996; 125:763-69. Woolf SH. Editorial: The logic and limits of shared decision making. J Urol 2001; 166:244-45.
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