The patient is the solution

We have learned over the years at our center that effective chronic illness
care requires two things. First, it requires a team with the patient at the
center. Second, it requires active, involved participants especially an
active, involved patient. This model of care can be described using various
terms empowerment, informed choice, patient centered but they all
have the same underlying concept: The patient is at the center and is
actively involved in his or her own health care.
The old model vs. the new
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But why can't we stick with the old models? Why does the patient need to
be so involved? There are several reasons.
First, most chronic illness care does not even involve physicians and other
health care professionals. Instead, it's estimated that between 95 percent
and 99 percent of chronic illness care is given by the person who has the
illness. On a day-to-day basis, the patient is in charge of his or her own
health, and the daily decisions people make have a huge impact on patient
outcomes and quality of life.
Second, as a family physician, you may know what's best for treating
diabetes or asthma or congestive heart failure, but that does not mean you
necessarily know what's best for an individual patient. Even in close doctor-
patient relationships, you can't always know the details of your patient's
lives: what's most important to them, what their other priorities are, what
motivates them, what their financial situation is, and so on. Each patient is
the expert in his or her own life.
Finally, we know from several studies that when patients are encouraged to
be more involved and when their physicians are less prescriptive, patients
do have better outcomes. We also know that this approach does not take
any more time but, in fact, can be more efficient because the health care
team is addressing the patient's agenda first and the patient's agenda is,
after all, the real reason for the visit.
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In addition to being a more effective approach, it can also be a relief. As a
physician, you may feel less frustrated because it is no longer your
responsibility to make change happen. It is a joint process. When you
create that partnership and get out of the role of simply telling patients what
to do, you pave the way for the patient to make significant, lasting change.
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, HbA
1c
) 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 real issue?
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.
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