Excerpted from Stroke Connection Magazine, May/June 2004.
First of a two-part Series by Jon Caswell
Many stroke survivors are patients for the rest of their lives. They remain under a doctor’s care, taking medicine and living with dietary, exercise and stress management prescriptions. Living this way is called “compliance” or “adherence.” It means “doing what your doctors tell you to do.”
Not following the doctor’s guidance is a huge, costly and growing problem in healthcare. A recent study by the World Health Organization found that half of all prescriptions written in developed countries like the United States were not taken as prescribed.
Of the 3 billion prescriptions written in the U.S. last year, 1.5 billion were either not filled or were used incorrectly. And that count doesn’t include how many lifestyle prescriptions, like getting regular exercise, were poorly implemented or simply ignored.
At first glance, compliance seems to be a patient problem. If patients would just do what they’re told, everything would be fine. The reality is much more complex, and when we began investigating why noncompliance is so widespread, we found that there are many barriers. While some are external barriers thrown up by the medical or insurance systems, many barriers are internal or psychological. In Part One of our two-part series on medication adherence, we look at the psychological challenges survivors face in following doctors’ orders. If you aren’t following doctors’ orders (and that’s about half of you), use this list to diagnose where the problem starts.
Internal Barriers for Complying
For many people, taking a prescription reminds them that they are sick. “Denial is not uncommon after a new diagnosis,” says Dr. Judith Bernardi, a licensed social worker and medical psychologist in private practice. “They take the drugs one day and miss a day to see if anything will happen.” For instance, many patients don’t feel appreciably better or worse taking blood pressure medication, but the long-term consequences of not reducing your blood pressure can be catastrophic.
- Stubborn refusal
Some patients simply refuse to cooperate. They may refuse to take their meds because of unpleasant side effects. Others expect immediate results, and quit when they don’t see them. If they doubt their treatment plan is effective, they are unlikely to cooperate. “Some may use refusal to comply as a way of taking control in circumstances where they seem to have little control,” says Dr. Bernardi. There are those, like cigarette smokers, who are unwilling to give up habits or foods they enjoy. And some people don’t comply with doctor’s orders because they get some benefit from their illness, perhaps using it to control those around them or to gain personal attention.
- Cognitive deficits
Stroke survivors often have short term memory loss that makes it difficult to maintain even a simple dosing schedule. Some patients have difficulty doing the complicated sequencing that multiple prescriptions require. Dementia or memory loss are especially serious problems for people with hypertension or diabetes, because the conditions have to be monitored constantly. “This can weigh heavily on the person in charge of care,” says Dr. Bernardi. “They may feel guilty or resentful if the person doesn’t comply.” “Which part of the brain is injured also makes a difference,” says Dr. Barry Jacobs, the Director of Behavioral Science at the Crozer-Keystone Family Practice Residency Program. “People with right-brain strokes are less cognizant of how they have been changed; they impulsively try to do things, such as walking or going to the bathroom on their own, that they may no longer be capable of managing independently. People with left-brain, frontal strokes are more likely to become depressed and to dwell negatively on their disabilities. They may not make much effort to do even those things that they are still capable of doing. Each type of injury has its disadvantages in terms of mood and insight for overall psychological adjustment.”
- Lack of knowledge
Many survivors leave the hospital before they understand how the stroke happened, and they often don’t know the therapeutic strategy or its goals. Some don’t understand the underlying condition that may have caused the stroke. They are often unprepared for the amount and complexity of information that comes with a new diagnosis. “Much of this information is provided at a time (immediately following the diagnosis or when being discharged from the hospital) when patients find it hard to focus on what is being said,” says Dr. James Rybacki, a clinical pharmacist and the author of The Essential Guide to Prescription Drugs 2004.
- Life gets busy and other priorities arise
It seems like taking a pill or two every day would be easy to do, but sometimes what is easy to do is easy not to do. And if there are no immediate repercussions for not taking your medicine or eating the wrong food, it may be even harder to remember. At first your medication may be the highest priority, but as you get further from the stroke, other priorities pop up and demand attention. A prescription bottle gets pushed behind something else, and without a symptom to signal that something is wrong, a patient may not remember that they have medicine to take until days or weeks later.