(from A Letter To Patients With Chronic Disease, July 21, 2010 by Dr. Rob in Better Health Network)
This is from a piece in Better Health, a bloggers network on the internet. Dr. Rob opens by confessing he's just an ordinary guy who happens to be a doctor and he's really afraid of chronic patients because they know their illness better than he does. With someone seriously mentally ill, he's aware he can't do much more than practice pharmacy. He's up on that but knows its limitations. So we have this strange apology from Dr. Rob to his chronic patients: “You have it very hard. After spending 16 years listening to the stories, seeing the tiredness in your eyes, hearing you try to describe the indescribable, I have come to understand that I, too, can’t understand what your lives are like. “How do you feel?” when you’ve forgotten what “normal” feels like? How do you deal with all of the people who think you are exaggerating your pain, your emotions, your fatigue? How do you decide when to believe them or when to trust your own body?
Dr. Rob says he can’t imagine. He says “You scare doctors. I am talking about your understanding of a fact that we are normal, fallible people who happen to doctor for a job. We are not special. In fact, many of us are very insecure, wanting to feel the affirmation of people who get better, hearing the praise of those we help. We want to cure disease, to save lives, to be the helping hand. But chronic, unsolvable disease stands square in our way. You don’t get better, and it makes many of us frustrated, and it makes some of us mad at you. We don’t want to face things we can’t fix because it shows our limits. We want the miraculous, and you deny us that chance.”
OK, Dr Rob: Where is this going?
“So when you approach a doctor,” he continues, “especially one you’ve never met before--you come with a knowledge of your disease that they don’t have, and a knowledge of the doctor’s limitations that few other patients have. You see why you scare doctors? Let me give you advice on dealing with doctors:”
“Don’t come on too strong--yes, you have to advocate for yourself, but remember that doctors are used to being in control. All of the other patients come into the room with immediate respect, but your understanding has torn down the doctor-god illusion.
“Show respect--I say this one carefully, because there are certainly some doctors who don’t treat patients with respect, especially ones like you with chronic disease. These doctors should be avoided.
“Keep your eggs in only a few baskets--find a good primary care doctor and a couple of specialists you trust. Don’t expect a new doctor to figure things out quickly. It takes me years of repeated visits to really understand many of my chronic disease patients.
“Use the ER only when absolutely needed--Emergency room physicians will always struggle with you. Just expect that. Their job is to decide if you need to be hospitalized, if you need emergency treatment, or if you can go home. They might not fix your pain, and certainly won’t try to fully understand you. That’s not their job.
“Don’t avoid doctors--one of the most frustrating things for me is when a complicated patient comes in after a long absence with a huge list of problems they want me to address. I can’t work that way, and I don’t think many doctors can. .
“Don't mess with the wrong people--you should keep looking until you find the right doctor(s) for you. Some docs are not cut out for chronic disease, while some of us like the long-term relationship.”
My comment: the trouble with this is that there are patients arrogant enough to try to bamboozle the doctor into prescribing medicine they want in the amounts they want, rather than listen to the doctor. If doctors are this insecure they're missing something in the relationship. He's underestimating the role he plays in society as God. In our culture we bow down to doctors. Only if they reek of malpractice--poor prescribing, misdiagnosis and the like, do we complain and move on. People with serious mental illness have indeed had it hard with doctors, not because of what he says but because doctors don't trust the patient to accurately describe symptoms and history. And the docs don't have an awful lot to go on.
So how do you talk to your doctor? Just to take one example. Let's say you're overweight. Or you're switching from one drug to another because the drug you're taking isn't working. There's a great book that talks about this, by Peter J. Weiden, MD et al, called “Breakthroughs in Antipsychotic Medications--A Guide for Consumers, Families and Clinicians” (1999). Weiden says people get nervous talking to their doctor about medication. “The doctor is the expert and they don't feel comfortable raising the question of switching medications.”
He suggests a respectful approach that also lets you in on the decision. You might say, “I'm having a lot of side effects on the medication I'm taking now. Do you think I might have less trouble with one of the new atypical antipsychotics?”or “I've been taking this medication for six months and I'm still having a lot of symptoms. I'm wondering if it might be time to try a different medicine. What do you think?”
Weiden affirms, writing over 10 years ago, that “it's important for you and your doctor to reach a decision together. Be sure to give your doctor all the information you can about what is going on with your illness and your life at the moment. If your doctor says it's not the right time for you to switch medications, be sure you understand why.”
Let's say you and your family have already met with your doctor and decided that it's time to change your medication. “Make the switch,” he says, rather than hesitate. “It's impossible to know ahead of time exactly how your body and brain will react to going off your old medication and starting the new one.” You'll be taking the new medicine while staying on the old in what is called a cross-over. He goes on to talk about the effect of the change on your side effect medicines, how to avoid relapse, and deal with a temporary increase in symptoms. “Sometimes switching medicine is like doing road work,” he says. “When the highway department starts repairing a road, things usually get worse before they get better.” The doctor has good sense. His way of dealing with his patients has a lot more going for it than the hustlers who sell a message today that recovering patients should tell the doctor what is best. That won't work for long. Doctors are changing, too, we believe. They no longer act like God, or shouldn't. (Roy Neville)