Dear Doctor (pt 2 - to Dr. Rob)

This is part two of a series I'm exploring. It was started by a post from Dr. Rob over at Musings of a Distractible Mind. Part one is basically the intro and link to the original post. This is the extremely long-winded reply I sent to him via email.

A Response from a Patient:

I am not angry with you (throughout this, interpret "you" to mean "my PCP" or PCPs in general). Most of the time, I'm not even frustrated with you. To the contrary, I want to do everything in my power to make your job easier because then I believe you will do your job better. The problem is... I don't know how to do this. And most likely, the majority of your patients who struggle in these areas aren't the ones to read blogs with excellent posts that address this topic. So a question to ponder: how can you get your information into the hands of those who would most benefit from it? Maybe a FAQ brochure next to your check-in/check-out counter? I don't know.

I do have a few clarifying questions/comments on your points...

1. Someone to trust: If I make an appointment with my PCP, I am required to state THE problem for which I am visiting. The message this sends to me is that I am only allowed to have one topic of concern per visit. This leaves me unsure what to do when I have 5 - 6 little questions pile up to the point I finally make an appointment. My solution to this is to make the appointment for the most critical or time sensitive issue. I then bring a complete list of what I wanted to talk to him about. When the nurse brings me back, I hand her my list, point out the one I made the appointment for and tell her I would like to go over as many of them as I can and need to know how many appointments I need to schedule. Since I began doing it this way, my PCP has never requested I make additional appointments. But that doesn't mean he isn't saying rude things about me because of it; I have no idea.

So my question for you is: with PCPs being so busy and so bogged down in red-tape, what is the most effective way to deal with lots of small issues? Does my method work? Or should I be calling his phone nurse? Or...? (A typical laundry list might include, "When do I need to get my thyroid checked again?" + "I'm having pain my knee when I do x activity" + "I read an article advising strep throat NOT be treated with antibiotics - can you shed light on this?" + "Do I need my asthma meds still?" + "My mother is convinced all of my depression symptoms are from my microwave; can I tell her that's not true?" --- The point being they are all unrelated and relatively small. PS - I'm NOT asking YOU those questions; they are just examples. LOL)

2. On fragmenting... My PCP's office does not have an x-ray machine. If I've fallen and injured a body part that is now swelling, I go to the urgent care center instead of my PCP's office because I can go right then and they DO have an x-ray. Likewise, when my daughter wakes up in the middle of a Saturday night shrieking because her ear hurts, I take her to the urgent care center in the morning because the PCP isn't open on Sundays. Are these the kind of visits you are talking about that cause fragmented care? Or do you mean the patient who rarely bothers with the PCP, instead going to the urgent care center or ER, whichever is closer at that exact moment? Should I be calling the PCP before I go to the urgent care center if it means using the answering service? For that matter, how do we know when it's appropriate to use the answering service?

3. Being my own keeper... I am fine with this. I ask all my specialists to send my PCP a copy, though half of them don't half the time. The only question I have is timing of updating the PCP. If I go to the ER with a surgery-worthy broken bone, do I call and let the PCP know during the next convenient set of business hours or just update them on the various comings and goings since I last saw him? Do you want to know that I went to Specialist X and we decided NOT to change anything? Or that I went to the urgent care center but it turned out to be a nasty bruise and not broken? If I end up in the hospital for medical stuff, do *I* need to call you or will they? What if I end up on the psych ward - do they tell you then? How do I know what to call you about and the timing on being notified?

One problem I have with the "don't assume that no news is good news": as a patient I feel this is a double-edged sword. If I call, the nurse acts like I'm wasting her time. If I don't call, I risk the results having fallen through the cracks. If I request they call me with the results regardless of outcome, they get positively snippy and don't call half the time anyways. Is there a specific set of magical words to use on the nurse so she doesn't bite my head off?

4. No PR work: This is extremely difficult for me as a patient. There are a couple of reasons (for me) why this is a tall order.


Firstly, I want to understand the whys and hows, not just follow directions blindly. I read a lot and I've seen a lot and I tend to be more medically literate than most people I know. But I am no MD. I have found it is a VERY thin line to walk between asking the questions I am thinking/worrying about and putting the doctor on the defensive. For example, when my daughter's doctor wanted to start her on Zoloft for anxiety and panic attacks, I was concerned about effects of SSRIs on kids. (She was 9 at the time.) I said, "I have read a lot of information that raises concerns about SSRIs in kids." (Politely, not sarcastically or rudely or challenging.) To which he replied, "Let me guess, you read it on the internet?" (making "internet" into a whole new class of swear word.) Reluctantly, I backed down. I also switched doctors. The point is that I want to be as much a part of the process as possible but this seems to make most of my doctors uncomfortable, like I am challenging them, when that is not my intention at all. So I guess my question to you would be, how do I become part of the decision-making process and let my doctors know that I read and research these topics without putting them on the defensive and/or being ridiculed?

Secondly, sometimes I feel just plain silly. For example, I have chronic headaches and have not been able to find the cause or trigger for them. At one point I went to my PCP about them, armed with about a million "possibilities" including everything from my mother's assertion that microwaved food is the cause of all of my problems to fears of a brain tumor. Some potential causes were anecdotal, some were results of internet research. But it really does sound silly and melodramatic to ask a PCP if I could have a brain tumor and it is the kind of thing that I have been laughed at (by a medical professional) for saying. So how do I ask about the possibilities running through my head without being mocked or dismissed? I have resorted to some creative tactics to ask my questions. In the case of my chronic headaches, I made a list of the "Top 10 Suspected Causes of my Headaches" and included, in random order, such things as hypertension and vitamin deficiency but also wacky things like squirrels chewing on my spinal cord. He got a real kick out of the list and it opened a dialog for brainstorming reasons. Now, every time I come in, he asks me how the squirrels are doing. (I love my PCP! He's HUMAN!!) I guess this one can be resolved with a combination of increased communication - making sure you know that I want to be included in the brainstorming for a cause process - and vigilance on the part of the PCP - you may hear "suggestions" (which are more often fears) that are so far out of the realm of possibility as to be funny to you, but to your patients, we may think it could be that very thing. So don't laugh, even when you want to, or we will stop talking to you.

A third thing that leads me to put on a PR face is a defense mechanism, pure and simple. I know that you see a billion patients every day. I can't help but fear a potential comparison between how one or more of them handle the same symptoms I am having as opposed to how I am handling them. When I come in with sun rash all up and down my arms, on my face, my legs, even my ears and scalp and I itch so bad I can't sleep or sit still, I judge myself and project that judgment on to you. *I* knew the sun would give me a rash but I stayed outside all day to watch my son's championship baseball game anyways. Do you blame me for now needed a round of steroids? Are you thinking, "It serves her right; she should have known better." Because *I* am thinking it. Are you thinking about the guy you saw that morning with poison ivy head to toe that was in much worse shape than I am in and only mildly ruffled it? Are you thinking that I should suck it up and stop whining? I worry that you are thinking that because *I* am thinking that. When you see my name on the schedule for the third time this month, are you thinking, "Oh, God! Not again. What a hypochondriac, what a wuss!" I worry that you are thinking that because *I* am thinking it. Even if I feel like crawling under a bush and dying, I want to seem strong and in control because I feel that you are judging me by the same criteria that I am judging myself. Now, I know my PCP doesn't judge me like this; it's not his style. But I still make sure I can find a smile and a joke for him somewhere in me even when half-blind with migraine pain. It is human nature to want to appear competent. You are in the unique position of seeing me almost exclusively when I am at my worst. So out comes the PR face. I'm not sure how to "fix" this except to ask you not to weigh my demeanor too strongly in the criteria for making a diagnosis. If I say I hurt, don't judge how badly by the expression on my face, ask me for a 1 - 10 number. If I say I hurt at a 7 even though I greeted you with a smile, either believe me or ask me other questions to narrow it down. (When my kids say something hurts, I ask what kind of pain, I poke and prod even in places that shouldn't be affected - like the tip of the chin for a headache - and I base my conclusions on those rather than the statement that something hurts and the look on their face.)

As far as me not saying I'm not going to follow your directions (like taking the prescribed med), I guarantee there will be a reason. I recently read a poll asking doctors if they address cost with their patients. I strongly urge you to do this, always. I'm not in the least bit concerned that you are buying into Big Pharma when you do this; I think you are checking for barriers to compliance. I think there are a few standard questions that should take care of 99% of the concerns your patients may have remaining when you think you are done... "Do you understand why I said XYZ?" "Do you understand our game plan for treating XYZ?" "What other questions or concerns do you have about XYZ?" (Asking what questions I have is preferable to asking if I have any because it is more inviting of a dialog as opposed to be slightly paternalistic and patronizing.)

5. Idiots - I agree that famous people can be idiots. But they can also be right. And because I don't know the difference, I need to trust you to tell me. If I bring up something that Oprah said, please tell me if she is right or wrong in that case, without mocking me. The same goes for when I read something that I don't know if it's BS or not. In the movie "The American President " with Michael Douglas, his advisor tells him, "People want leadership, Mr. President, and in the absence of genuine leadership, they'll listen to anyone who steps up to the microphone. They want leadership. They're so thirsty for it they'll crawl through the desert toward a mirage, and when they discover there's no water, they'll drink the sand." To which he replies, "Lewis, we've had presidents who were beloved, who couldn't find a coherent sentence with two hands and a flashlight. People don't drink the sand because they're thirsty. They drink the sand because they don't know the difference." Try to bear with us as we attempt to decipher which water and which is sand.

6. You can't "fix" everything - I know that sometimes it seems like I go to my PCP for every little thing. I try hard not to pester him but I truly don't know where else to go for information. I typically take a wait and see approach unless something has me in tears, interferes with my sleep, or scares the bejeebers out of me. Truthfully though, there are so many mixed messages out here, I don't know when I should call you or not. My daughter had a headache and an upset stomach for two days. She also had a science test and no fever or vomiting. I sent her to school. She called afterwards wanting to skip play practice because her throat hurt. I called the PCP to see how long to let it go before making an appt. They said come in for a strep test. Thinking they were insane and test happy, I dragged her to the office for a test, thinking "Dude! No fever and mostly a headache and stomach-ache. WTH?" She had strep. That isn't what bugs me. What got to me is that the doctor (her dr's partner, not her regular ped) reamed me out for not bringing her in sooner and sending her to school. This same doctor reamed me out for bringing her in when she had a fever and icky-sounding cough for 3 days. One article says treat strep or risk heart trouble, one says don't bother treating it as it will go away. One doctor says a fever is over 100 degrees, another says 101. And then there are all the tv ads that says to ask my doctor if this med is right for me.

The point to that rant is that I don't expect my PCP to fix everything. I am quite content if he says, "Don't worry about this. It's caused by XYZ and will take care of itself." The reason it sometimes seems as if I want you to fix all problems is because I don't know the difference between a nasty cold that won't away and pneumonia that will land me in the hospital if not treated. (I've had both.) Please don't feel like you have to throw a prescription at me to keep me happy. I've come to you to find out a) what is wrong with me? and b) what do I do about it? Sometimes you can fix it, sometimes you can't fix it, and sometimes it doesn't even need fixed. But knowledge is power and sometimes it is the only cure I need.

Wow. This got REALLY long, REALLY fast. Sorry about that. If I could sum it all up and offer a suggestion from this patient's POV, I would tell you it's all about communication. If we know each other's expectations of each other and reasons for them, we can be a team. Neither of us is perfect but I think we are both working towards the same goal: healthy, happy lives. Our relationship is built more on whether or not we are heading towards that goal together rather than whether or not we reach that ideal.

Sincerely,

[me]