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Wednesday, April 6, 2005 - Page updated at 12:00 a.m.

Some patients try their doctors' patience

Seattle Times staff reporter

Enlarge this photoSUSAN JOUFLAS / THE SEATTLE TIMES

Every doctor has a story about the "bad patient."

There was the middle-aged woman who self-diagnosed her sniffles as a "sinus infection" and "borrowed" antibiotics from her friend. Another patient, a man in kidney failure who was supposed to show up for dialysis three times a week, only went once a month — and periodically developed such severe problems he had to be hospitalized.

Another patient, a diabetic, remained steadfastly opposed to eating and taking her medication on a regular schedule, and bristled when health providers intervened. One day, driving her car through a busy intersection, she passed out.

In medical literature, of course, no patient is actually "bad." They're only "noncompliant" or, in the latest jargon, "nonadherent."

Whatever they're called, they're everywhere. They may be living in your house — wearing your clothes, even.

Studies show that only about half the patients who leave their doctors' offices with a prescription take the medication as directed, according to the Merck Manual, a leading medical source. Thirty days later, more than 75 percent aren't following the treatment plan, says Paul Keckley, executive director of the Vanderbilt Center for Evidence-Based Medicine.

As a result, they often get sicker: According to an estimate from the Office of the U.S. Inspector General, in the cardiovascular area alone, 125,000 deaths each year can be attributed to noncompliance by heart patients, along with up to 23 percent of nursing-home admissions, 10 percent of hospital admissions and many doctor visits, tests and treatments.

Causes of patient noncompliance


The leading reasons why patients don't follow medication instructions include:

Misunderstanding of prescribing instructions

Forgetfulness

Denial of the illness or its significance

Reduction, fluctuation or disappearance of symptoms

Concerns about taking drugs (for example, adverse effects, addiction)

Financial concerns

Apathy

Physical difficulties (such as trouble swallowing tablets or capsules, opening bottles, getting prescriptions filled)

Complex regimens

Similar appearing drugs

Unpleasant taste or smell

Inconvenient or restrictive precautions (such as no alcohol or cheese)

Source: The Merck Manual

Apparently, fear of sickness or death isn't enough to motivate some patients. Here's a new reason for trying harder to be a "good" patient: Doctors increasingly are being rated and even paid based on how well their patients do, as "pay for performance" and "outcome-based" measurements tighten their grip on ever-expanding health-care costs.

Critics warn that doctors may be pressured to "cherry-pick" patients. At the very least, many in the health field worry that patients who thumb their noses at medical advice will have a hard time finding help, particularly for chronic conditions.

"Providers are going to become very picky about who they work with — they're going to want to work with people who want to be successful with their health," says Veronica Foster-Jones, clinical consultant for disease management for the state's Medical Assistance Administration. "I see that as becoming a big issue."

For an increasing number of patients, there's likely to be a pocketbook incentive for following medical advice. In this area, King County is planning to reduce health plan co-payments for its employees who follow their doctors' advice.

Very likely, one or the other of these scenarios is in your future. So why not practice being a "good" patient? It may help give you more choice of providers, reduce your health-insurance out-of-pocket costs, and make you feel better.

Start by thinking of the doctor-patient relationship as a partnership, say those who have studied the relationship. You — the patient — are the "managing partner," says Dr. Mary Starkebaum, a Green Lake-area internist.

These days, doctors are working to improve their role in the partnership, trying to understand how better to communicate, motivate and interact with patients. Some are coming to believe that there isn't any such thing as a "bad" patient, just a "bad" connection, perhaps a bad match of communication styles.

In any case, as Starkebaum notes, a doctor can't do the patient's part. "Only the patient can do that — or not."

So, how can you help yourself become a "better" patient?

Start by asking yourself: Do I want to be healthy or not? Foster-Jones, who has turned around many a prickly patient, starts with a simple question: "I ask up front: 'Do you want to be well? Yes or no?' " she demands.

"If they don't, there's nothing I can do. All the talk and education I can do won't help — I'm talking to a brick wall."

The next step, for many patients, is to realize that managing their disease may not be a "quick fix." It may involve many steps to find out what's needed — which medications work, what schedule, what lifestyle changes. As the "managing partner," are you doing your part? Starkebaum, in a newsletter, told patients how they could make appointments more productive: "Bring a List! Bring a Friend! Bring Bottles (of pills)!"

Ask yourself: What's in my way? For many people, the answer may be complicated. It may be denial: For example, some people don't like the idea of taking antidepressants, even though they may need them, because they believe having a "mental illness" is shameful, a sort of character flaw rather than the more modern view that such conditions are caused by chemical imbalances.

What's in my way, Part II: Do you understand how to work the system? How to get an appointment? What to do when the medication isn't working? Do you like your doctor? Communicate with him or her well? Are you just forgetting to take your medications? Are you having a side effect — or worrying about one — you haven't talked to your doctor about?

Be honest with your provider. Many patients will tell their doctors they're taking the medication, even when they're not, says Dr. Edward Benson, chief of endocrinology for Group Health Cooperative. If you tell the doctor you don't want to take the medication, he says, then you can discuss alternatives. If you say you're just forgetting to take it, he's got some strategies to help you remember, like taping your medicine bottle to your toothbrush — a routine you likely don't forget.

Be up front with yourself about the difficulty of taking a medication that doesn't make you feel better, but may extend your life. For example, says Benson, medication for high blood pressure or cholesterol may not make you feel better, but is important to your longevity. "What patients can do to improve their compliance is be open and honest with the doctor — say, 'I'm having a hard time with this medicine because it makes it hard to get out of bed in the morning,' or 'I just have the feeling it's doing something bad to me.' "

Ask questions of your provider about your medication, your treatment, timing and resources. Under the current system, it's not surprising that you have trouble following "orders," Keckley says: Doctors keep you stewing in the waiting room, give you mere seconds before they interrupt you and use words you don't understand. In that situation, Keckley notes, most patients — 72 percent — are totally incapable or unwilling to question what they're told. While doctors work on changing their own styles, patients will do themselves a favor if they start trying to change this dysfunctional interaction.

"I think people are much more likely to follow a plan that they understand and participate in," Starkebaum says. "I think explanations are really important, because I don't see how a patient can follow a plan they don't understand."

Get in touch with your feelings about being sick. Some people, Starkebaum says, expect that their natural state should be "well," and are indignant or angry when they're not. That may lead them to abandon treatments or medications when they shouldn't. "People have to remember that bodily perfection isn't natural," she says. "It's natural for people to get sick and die."

As a doctor, Starkebaum says, "my tools are pills. If you come in with a problem, I'm likely to offer a pill." But some patients, at that point, "suck on their teeth and say, 'I don't like to take pills.'" She assures them they don't have to. But, she adds, if they continually refuse her help, she has been known to suggest they might be happier with another provider.

Give honest feedback to your provider. "When we give a medicine, all we can know is general patterns, not an individual's specifics. So we don't want obedience from our patients, we want feedback," Starkebaum says. Doctors need to know that you aren't taking your medication, and why. If you stopped or started something, say so, even if it's an "herbal" remedy, a vitamin or a skin cream. If you have no faith in the medication to help you, say so. If you can't afford it, say that, too.

Think about what "styles" work best for you. Some researchers believe that when things go awry, it's often a mismatch of communication styles. Dr. Paul Ciechanowski, a psychiatrist at the University of Washington, says some patients are "self-reliant," and want more autonomy, while others are more "cautious," and need gentle reminders. If you're the type of patient who brings in a file of medical-journal articles, you're going to need a provider who doesn't bristle at your efforts.

Increasingly, there are choices for you, and the more aware you are of what you need, the easier it will be to find what works. For example: Would you work best with a doctor who will consult by phone or e-mail? Are same-day appointments about the only way you can actually show up? Do you want to read your medical records online? Group Health Cooperative offers these services; so do some retainer-fee practices and a smattering of others. Ask questions.

In the Brave New World of health care, Ciechanowski and Keckley predict, you're not just going to be a patient: You're going to be the "consumer."

Carol M. Ostrom: 206-464-2249 or costrom@seattletimes.com

Copyright © 2005 The Seattle Times Company


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