It’s a common complaint. A new client comes to my office for help with pain management for recurrent and severe headaches. Although she has been diagnosed and treated for migraine, she hasn’t responded to treatment. There is even some question about whether what she is dealing with is migraine after all.
In the course of getting to know her, I find that she is seeing many providers: a primary care physician; an ear, nose and throat (ENT) specialist; a neurologist; an allergist; and an acupuncturist. Although she has signed releases allowing each of her care providers to speak with the others, and although she knows that copies of her records have been exchanged, she is frustrated and angry that no one seems really to be coordinating her care. She reports a recent meeting with her neurologist who clearly hadn’t read the report from the ENT. “I only get 20 minutes with these people and I want to be talking about my questions, not watching them read,” she says. “Yesterday, the neurologist seemed to have forgotten that I already had an MRI only a few weeks ago.”
Before I can help this woman manage her pain, I need to help her manage her care. Indeed, some of her pain may be stemming from the stress of knowing that there is something seriously wrong and feeling that her doctors aren’t always working together.
Most of us are not at our best when we are afraid and hurting. Just when we would like to retreat to the comfort of bed and solitude, we find ourselves having to get to many appointments with many doctors, each with a specialty more scary than the last. Each body part seems to need a different doctor who speaks a different incomprehensible language. Illness has transported us to a new reality where we are confronted with mysterious Latin terms and recommendations for medical tests or procedures that seem to be derived from medieval tortures. If we are lucky, we have a partner or a good friend who can be an emotional support. Often enough, she or he is as mystified and concerned as we are.
When we are ill, most of us would like to be able to turn to a warm, comforting country doctor who has known us from birth and who can make it all better. Since most of us know just how complicated medicine can be, we would also like that same country doctor to be a world famous specialist! Needless to say, this is fantasy. Even if such a person did exist, she or he would be buried under a huge caseload and a mountain of paperwork in no time at all. Specialization is necessary because it is impossible for any one person to know all there is to know about the human body, illness, and interventions. But with the specialization around diseases and body systems has come a certain distance from the person who carries them.
My client knows this. She is also in pain. She understands the pressure that her doctors are under and even sees them as essentially good people who are trying to help her. She had thought that it was enough that she get to appointments and do what her doctors told her to do. She wasn’t prepared for the sheer volume of information that would come her way or for the fact that some of it seems contradictory. She had thought that her primary doctor would translate everything for her, but he isn’t as available to her as she needs for him to be. If she didn’t already have a headache when this whole process started, she would certainly have one by now! How can an ordinary person sort out what is going on and what to do? How do we get the best possible care?
7 Steps for Improving Your Healthcare
Here are some ways to work with your care providers so that you get good care:
- Be your own case manager. To get the maximum benefit from health care providers, we each need to learn to be our own case manager. When we become an active member of our own health care team, we are less likely to become depressed or anxious and we are more likely to get better. An essential factor in our resiliency is our ability to engage with the problem.
- Keep a record of your appointments. When things get complicated, it helps to write things down. Keep a record of appointments and what occurred at each one. Note what the doctor wants you to do. Write down medication names and dosages.
- Keep a daily log. When you are feeling sick, it is difficult to remember that today is still better than yesterday. Write down your symptoms and how they change from day to day. Keep track of when you take your medications and how they affect you. You might also want to track your eating and sleeping. This information can help your doctor see patterns of symptoms and reactions over time.
- Stay focused at appointments. Put your questions and comments on a notecard or piece of paper so that you can stay focused during your appointment. This will help ensure that you will use your time well when you are with your care provider.
- Take a friend with you to appointments. Sometimes, when we hurt so much or are so afraid, it is difficult to hear. It’s a good idea to have someone else at appointments who can listen, take notes, and help you remember the questions you wanted to ask.
- Remember that you and your care provider are on the same team. Yes, they are busy. Yes, it is frustrating when they don’t seem on top of things. But they are still your primary source of information. Doctors are human, too. If you vent your anger or state concerns in a challenging way, you aren’t going to get the caring response you want. State your concerns as questions. Ask your providers to help you understand.
- Follow the treatment plan. Once you and your doctors have decided on a course of treatment, give it a fair chance. Many medications take a number of days to reach a therapeutic level. You may not be able to control your illness but you can control how you are handling it. In general, follow the advice of the people you are paying to give you advice. Even if you don’t get the results you want in a few days, you will then know that the failure is due to the treatment plan, not to your unwillingness to follow that plan.
As we talked about how to be a more effective advocate for her own health care, my client visibly relaxed. She realized that she had been feeling quite helpless in the face of the complexity and sheer number of interactions with doctors that had occurred in the past few weeks. Having some ideas about how to be a better advocate for herself helped her feel more in control of the situation. Having accomplished that, we could move to working on pain management skills.