Sunday, December 06, 2009

Learning To Be a Primary Care Patient

I do not subscribe to the saying, “There’s no such thing as a stupid question.”

There are many, many stupid questions. So opposed am I to the asking of stupid (by which I really mean unnecessary) questions that I go out of my way to acknowledge that a really good question is just that when I hear one. It’s a delicate balance, being accessible and approachable and trying to instill independent thought and accountability at the same time.

Asking to clarify a particular point in an assignment prompt? Totally valid question, and likely a question others have, too. Asking when that assignment is due, when that information has been available in four places, hard copy and electronic, for weeks? Less valid.

You might wonder what any of this has to do with primary care (though I did just have a long conversation about the culture of instant gratification and unwillingness to dig around for answers when it is so easy to text or e-mail someone to do it for you with a pediatric nurse practitioner in primary care, and she had a lot to say…)

I digress.

No, this post isn’t about the downsides of technology, or the ramifications of all kinds of information, vetted or not, being available with little effort on our parts. It’s about what happens when a rare disease patient enters primary care:

She asks stupid questions.

Guilty as charged. (See? Aren’t you glad I didn’t totally jump on my soapbox earlier?)

After years of floating between specialists, I love having a primary care doctor. More than that, I really like my specific doctor, and his whole group, and I love that my primary care doc and all my other specialists are all in communication with each other.

But I’m still learning how to be a primary care patient. I’m used to disasters and calamities; I’m used to avoiding the hospital merely because I already have all the equipment at home. So this week, when I had some progressively painful jaw symptoms that were likely something very minor, I was hesitant to make an appointment. However, with several dozen ear and sinus surgeries, a major mastoid surgery, and infections that have impacted my jaw bone several times under my belt, it seemed worth checking out.

The earliest appointment was two weeks away, or I could make an appointment in urgent care. I hung up without making an appointment, because this wasn’t urgent, and I didn’t want to take up an appointment slot when they are acutely ill patients out there. It is H1N1 season, after all.

I was told by several people I was over-thinking the term “urgent.” So I e-mailed my doctor, cringing at the knowledge I was now flooding someone’s inbox with a stupid question (remember, guilty as charged): should I just wait the two weeks, or make the appointment?

“Urgent” is all relative to me, to all patients with chronic or rare diseases. To me, it’s how much blood I am coughing up that makes me consider contacting my doctor, not blood itself. It’s how much lower my peak flows are, not just that they’re scary low, or how erratic my blood pressure or pulse is, not merely that they are erratic. I don’t go to the doctor every time I am sick because then I’d always be at the doctor. In fact, I try to avoid it, because I don’t need the exposure to other germs, and I’m at the hospital for tests and maintenance enough as it is. We have a plan set in place, and we follow the script unless things get very serious.

Of course, there are extremes to this, and times I should have gone to doctor and I didn’t (hello, trauma room, if only I’d avoided you) and times I erred on the side of caution and ended up wishing I’d just dealt with it at home like I normally do.

But the point is, for many of us, the baseline we use for “urgent” is totally skewed. I’m not totally sure how to behave appropriately in a primary care setting, but I’m figuring it out as I go.

My doctor assured me my question wasn’t stupid. Maybe the real issue isn’t that it was an unnecessary one so much as I simply didn’t know how to answer it on my own—my experiences didn’t speak to this kind of judgment call in a helpful way.

Luckily it’s not simply my call to make, and asking a professional made it a lot easier.

Anyone else out there been caught in this kind of over-thinking when it comes to “normal” health stuff?


Mary said...

Not necessarily the same as overthinking, but I have the skewed sense of pain because of a chronic joint pain problem. In the summer, I developed a new, unrelated condition - stomach pain. I kept complaining, and no one was taking me seriously. Eventually I realised part of the problem. I was saying "doctor, I am not well, I had to take a lot of painkillers one day last week" when the message should have been "I have taken extra painkillers every day of the week to deal with this pain, and I had to go to the highest possible dose of the strongest medication one day".

But it's so "normal" for me to have pain every day, and to take painkillers, that I was giving the doctors a false impression that I was mostly fine and having only occasional stomach problems, as opposed to something that was causing trouble every day.

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Never That Easy said...

I absolutely understand your point about not being able to tell when something is truly urgent, or if you should just wait it out. (Things I have tried - and failed - to wait out: Whooping cough, pnuemonia, appendix near to bursting.) I think part of it, for me anyways, is also having a "controversial" diagnosis - I have had doctors disbelieve my symptoms - or, at the very least, the severity of my symptoms - and that not only makes me second guess my own experience, but it makes me even more leery of going to the doctor for something that might wind up to be (relatively) minor. Often, this backfires on me - giving a minor infection time to blow up on me, for example. Having a good relationship with your doctor is so critical for those of us with chronic illnesses, and this is just another reason why.

Elizabeth said...

I can totally relate to this. Several times in the past few months I've encountered this situation with a primary care doctor, both for me and my son. I find it frustrating, actually, that determining what is "urgent" and what is not is left up to the patient. In my experience, 9 times out of 10 it pays to be aggressive about demanding an appointment sooner rather than later. I sometimes feel bad doing it, thinking like you that other people probably have more urgent situations than I. But I think it's the doctor's (or nurse's) job to determine whether your condition is urgent enough to warrant an immediate appointment. I've also noticed that the louder/more demanding patients get served first/faster, both in primary care and emergency situations. Unfortunately, after some experiences with a condition worsening unnecessarily because I held back, I've learned that when demanding appointments and other services, I need to be aggressive, and, sadly, out for my own needs.

Unknown said...

I mostly have skewed views toward "normal" health issues, on a purely emotional and non-rational level, assuming that every severe pain I get is going to be chronic, like my 20-year chronic headache. This happened when I had a C section in September giving birth to my second son; I was inordinately anxious afterward because of the severe pain I felt at the site of the incision that week. I couldn't imagine having such pain and it NOT going away. I was then astounded how fast this non-chronic pain diminished. It was an amazing experience, perhaps even refreshing, :) having pain that they actually KNOW how to treat!

Dianna said...

Of course I can relate to your post! I already have a part-time job attending various doctor appointments, having labs drawn, and MRI's run. Who wants to make an extra trip to the doctor for a cough? Well, that extra trip is necessary for someone like me with asthma and multiple sclerosis. After nearly being hospitalized with pneumonia two years ago, I have learned to be more pro-active about the illnesses that most people would simply wait out. Of course, it helps that I have found a great PCP who is available on a day's notice. I may not be able to get in with my specialists right away, but my PCP runs interference and hooks me up with appointments, tests, or medications as necessary.

Kairol Rosenthal said...

My husband and the 24 hour nurse line at my insurance company are my sounding boards for "Is this normal?" I admit I'm a bit of a hypochondriac. But years of time in drs offices for cancer treatment make me want to save a doctor's appointment as a last resort. I have a hard time judging urgency on my own and recommend that anyone else who does try to assemble a regular team of reasonable go-to people who can help you decide.

Also, I love that you think that some questions really are stupid. What a right on statement in a sometimes too politically correct world!


Laurie said...

Thanks, everyone! I do think because our personal "normals" are often so different that it can be really tough to judge.

Paula--I've been thinking of you, since I remembered you were due this fall. Congratulations on the birth of your second son!! I hope all of you are doing well!

(And yes, how refreshing is it when there is actually something finite we can treat and move past?)

Kairol, I totally hear you. My husband is a great sounding board for "what is normal?" Also, nice to hear feedback on the stupid question thing. I guess the more politically correct thing is to consider them unnecessary, rather than stupid, and we all do it. I know I do, and I hate it when I do. But when you get dozens of them the tolerance wanes a bit :)

Lissa said...

Just the opposite, actually. I recently found out that I had a stress fracture in my leg at some point. Honestly, I have no idea when or how it happened. I'm sure I just figured it was a pain flare up, and not worth a trip to the doctor.

Aviva said...

One more reason I have an e-crush on you, Laurie, is that you dare to contradict the folks who say there's no such thing as a stupid question. Of course there is! And you gave a great example, too.

I have a great PCP, whom I adore, but I still go back and forth between being very proactive and going to the doctor for any new little thing and putting it off assuming it's just a new flare or a new trouble spot.

I recently wrote about that difficulty in deciding when to go see a doctor (or go to the ER):

And of course even though I asked for advice and got several comments (and more private emails) telling me to either get myself to my doctor or head straight to the ER, I still ended up waiting it out and finally went to my regular appointment yesterday. Where, of course, my PCP asked why the heck didn't I call her. :-)

Congrats on finding a PCP you like in a practice you like. That's huge!!

thiru said...

Great Read.. Thanks for sharing....

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