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Part 2- Helping Patients Take Charge of Their Chronic Illnesses

Empowerment through education
It's very difficult for patients to do what they don't understand, so the first step in equipping patients to take on a more active role in their health care is to educate them. Start by communicating to patients that education is perhaps as important to their health as getting their prescriptions filled. They need to know all they can about their disease.
But just as patient-centered care can be more effective, patient-centered education is better education. The old education program, where you bring people in, sit them down and lecture to them, doesn't work any better than bringing them in, sitting them down and telling them to lose 20 pounds. Instead, the patient's needs should drive the education. For example, our center is testing diabetes education courses based entirely on questions from the audience. We do have a checklist of topics we want to cover, but we address those topics in the context of patient questions rather than through an impersonal lecture. Patients aren't interested in their disease from an intellectual perspective, as we are. They want to know about themselves. What does this mean to me? How's this different for me? How's it going to affect my life?
Four of the most important lessons patients with chronic diseases need to understand are the following:
1.     Their illness is serious. There are still patients out there who believe they have the “not-so-serious kind of diabetes.” If they don't believe it is a problem, they will never make changes to improve their health.
2.     Their condition is essentially self-managed. Every decision patients make throughout the day, from what they eat to whether they walk or ride the bus, has an influence on their health. Communicate to patients that they are the most important individuals in managing their illnesses.
3.     They have options. There is rarely one perfect way to treat a condition. In the case of diabetes, for example, patients can be treated through diet and exercise, oral medication, insulin and so on. Patients need to understand the different treatment options available and should be encouraged to look at the personal costs and benefits of each. Only the patient can decide if the benefits are greater than the costs.
4.     They can change their behavior. Rarely do patients leave the doctor's office and immediately enact whatever change was recommended. The reality is that it often has to be spread out into a series of steps. Teach patients that significant behavioral changes can be made by setting goals, taking that first step and figuring out what you learn about yourself along the way.
Empowering patients with information
One way to help patients focus and begin thinking about their health care goals is to talk with them about their individual health measures (e.g., blood pressure, LDL, HbA1c) and what those numbers mean. At our center, for example, we give patients a handout that lists the critical measures for their condition (ideal and actual), explains what those numbers mean and offers strategies for improvement. When faced with this information, patients can see for themselves where they are struggling and what they can do to better their scores.
A sample page from our handout is shown here.
Blood Pressure
Actual: _________________ mm/Hg
Ideal: 130/85 or lower
My goal is: ______________
A blood pressure reading has two numbers. The top number is called systolic blood pressure. This is the amount of pressure against the blood vessel walls when your heart pumps. The bottom number is called diastolic blood pressure. This is the amount of pressure against the blood vessel walls when your heart relaxes, that is, between heart beats.
In general, high blood pressure means that systolic blood pressure, diastolic blood pressure or both may be too high. For people with diabetes, high blood pressure is 130/85 or higher. High blood pressure increases your risk for strokes, heart attacks, kidney damage and eye disease.
To lower your blood pressure you can:
·       Eat less salt,
·       Take blood pressure medicine,
·       Exercise,
·       Stop smoking,
·       Monitor blood pressure,
·       Drink less alcohol,
·       Maintain reasonable weight,
·       Other: _________________________________
Helping patients set goals
In the patient-centered model of care, the driving force behind each patient visit is the patient's agenda or goals related to his or her condition. Ideally, the goal is clearly displayed in the patient's chart, and each person who handles the chart plays a part in supporting the patient in that goal, asking, “How did it go? What have you done this week? How can we help you do better?”
You might be thinking, “My patients don't have goals,” but they do. Even “noncom-pliant” patients have goals. Probably the best definition of noncompliance is a doctor and patient working toward different goals.
The process of setting “self-management” goals with the patient involves essentially two steps.
1.     Start at the problem. Rather than beginning the patient encounter focused on lab values or weight or blood pressure readings, begin by saying, “Tell me what concerns you most. Tell me what is hardest for you. Tell me what you're most distressed about and what you'd most like to change.” You'll get to the lab values and other issues later, but it will be in the context of the patient's personal goal, which will make it more meaningful for the patient.
As you begin to get a sense of the patient's concerns, explore those issues together. Ask, “Is there an underlying problem? Do you really want this problem to be solved? What's the realissue?”
2.     Develop a collaborative goal. Once you have worked with the patient to identify the real problem, your instinct may be to try to solve it, but don't. Don't try to fix it. Don't just say, “It will be OK.” Instead, validate the patient's feelings and his or her capacity to deal with the problem, and continue asking questions that will lead the patient to his or her own solution. Ask, “What do you think would work? What have you tried in the past? What would you like to try?”
It's always more meaningful when patients find the “ah ha!” on their own, so give them that chance. Encourage them to come up with ideas first, then offer your own suggestions or additional information that they may need. You can say “this works for some people” or “have you tried this?” or “here's why I don't think that's a good idea.” The important thing is to give the patient the opportunity to say “no” and to make the final decision on what goal to try.
Ultimately, at the end of the conversation, the patient should be able to tell you one step he or she is going to take. It should be very specific. If the patient says, “I'm going to exercise more,” ask what that means. Will they exercise four times a week? What activity will they be doing? How far will they walk? Help them to come up with a specific plan that they have created for themselves. It may not be the ultimate goal you would have chosen for the patient, but it's one they are more likely to accomplish. At the next visit, then, you can build on that.
Who actually works with patients to set their goals, whether you or the nurse or the diabetes educator, is perhaps less important than the fact that patients are encouraged to be more involved. The emphasis on self-management goals suggests that the visit is for them. It is their agenda, and they are active participants in the outcome.
Series overview
This article is part of an FPM series that followed Family Care Network, a northwest Washington state group without walls, as it tackled a 13-month quality improvement project focused on chronic disease care. The project was headed by the Institute for Healthcare Improvement and involved approximately 30 organizations nationwide.
Articles in the series are:
Building a Patient Registry From the Ground Up,” November/December 1999, page 43.
Using Flow Sheets to Improve Diabetes Care,” June 2000, page 60.
Making Diabetes Checkups More Fruitful,” September 2000, page 51.
Unnatural instincts?
The patient-centered model of care, and the emphasis on empowering patients to find their own solutions, may go against your instincts as a physician. As health care professionals, we often feel most helpful when we've given advice. The truth is, however, that we don't really help people solve their problems or make lasting changes in their lives by telling them what they should do. Ultimately, patients need to find their own solutions and motivation and must take responsibility for their health. We must empower them to do just that.
Martha Funnell, a certified diabetes educator, is the director for administration at the Michigan Diabetes Research and Training Center, University of Michigan Health System at Ann Arbor. The MDRTC has been funded by the National Institutes of Health since 1977 and is one of six such centers in the United States.
1. Wagner EH, Austin BT, Von Koroff M. Improving outcomes in chronic illness. Managed Care Quarterly.1996;4(2):12–25.


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