Meds Compliance: Our Window of Opportunity
My blog Knowledge is Necessity features two posts on staying well, inspired by two studies five years apart that surveyed "successful" bipolar patients for what worked for them. We will go into these studies in more depth in a future post here. Right now, we will focus on one salient point involving medications.
Eighty-five percent of the patients in the first study were on meds, but it was clear that the meds did not figure so prominently in these patients' overall wellness. For instance, one patient had Zyprexa handy as a standby med with the permission of his psychiatrist. He had used the Zyprexa twice in the past year. More important to this patient were meditation and exercise and other practices.
The authors of the second study identified six key strategies that corroborated the stay well practices in the first study. Successful patients, for instance, paid attention to sleep, rest, diet and exercise, closely monitored their moods, engaged in reflective and meditative practices, educated themselves and others, connected with others, and had various emergency plans on tap.
Note that meds management was not on the list. It is reasonable to assume that most of the patients in the second study would have been on meds. It was just that there were more important things these patients had to contend with. Getting one's sleep right, for one. Taking time out when stressful events threatened to overwhelm the brain, for another. Choosing to change careers or friends to accommodate living with a severe chronic illness, for yet another.
What is fairly obvious from these studies and my own experiences listening to patients in support groups and other venues is the diminishing role of meds in our lives as we learn to manage our illness. We may still have to remain on meds, but they are no longer doing all the heavy lifting. Unfortunately, psychiatrists appear largely ignorant of this fact of life.
Psychiatry excels at getting patients out of crisis and into stabilization. Over-medication and onerous side effects are not major issues when our lives are in danger. Things change soon change. The patient is better and wants to move on to being well, hopefully on much lower meds doses. He or she is in a position to intelligently discuss his or her illness and treatment options, but is a long way from mastering the recovery tools involved in getting to well.
This means the patient may have to stay on overly high meds doses for much longer than he or she wants to, and this poses a major problem that psychiatry is not addressing. Two years ago, I gave a grand rounds to a group of clinicians in Princeton, NJ in which I observed that the drop-out rates over the long term for the cancer med tamoxifen were much lower than for Zyprexa (which was fairly representative of other psychiatric meds studies).
In fact, the drop-out/compliance rates in both studies were almost exact opposites. Nearly eight in ten stayed on the cancer drug. Nearly eight in ten stopped taking the Zyprexa. Here's the kicker: the makers of tamoxifen stopped the study in its second year as they felt the drop-out rates were unacceptable.
What was different about the two groups of patients? Could it be that cancer patients were simply much smarter than psychiatric patients? Or could the difference lie in what their doctors were telling them? I was just guessing, but the clinicians in my audience went along with this:
What oncologists may be telling their patients is this: "It's going to be hell, but there is an excellent chance your cancer will go away."
Contrast this to what I know too many psychiatrists are telling their patients: "What are you complaining about? These meds work. Something must be wrong with you. You're much better off than you were before. You need to stay on these drugs the rest of your life."
I was greeted with frozen cold Kelvin grade silence when I put up that PowerPoint. Then I went to the cancer patient. What is he or she thinking? I asked. Perhaps this: "One year of hell - if that's what it takes to get my old life back, I'm willing to put up with it."
Contrast this to what I know the psychiatric patient is thinking: "This is the best you can do? You mean I'm going to have to spend the rest of my life - like this?"
Here is where I am coming from: A lot of us are willing to put up with a year of no sex drive, provided we see light at the end of the tunnel. Or of feeling like a zombie or of putting on weight or a whole host of other complaints. But we need to know that our doctor is in our corner, that he or she is going to work with us on our recovery, that as our knowledge and skills improve our doctors will be in a better position to help us and that we will be in a better position to help ourselves.
The clinicians in my audience all bolted for the exits as soon as my lips stopped moving. The problem, it seems, is that doing what is best for the patient would involve major changes in the way they practice medicine and therapy. As a friend of mine, Willa Goodfellow, who is coincidentally investigating the issue of meds compliance on her blog, Prozac Monologues, commented in response to my second staying well post:
I am now at the stage that if I complain to my doc that my meds aren't working, all she has left in her toolbox are things that would make me feel worse.
So here we are - stable, better, but not well, on meds that tend to make us feel worse, needing the incentive to keep taking them, but not receiving any encouragement from the people who write out our prescriptions. Ironically, patients can get that encouragement from patient support groups such as DBSA. So you would think that doctors would refer their patients to these groups, right?