What Kind of Patient I Am

>> Friday, June 12, 2009


A week or so ago, I wrote a post about what I look for in a doctor. I used an article from the New York Times about a rather extreme example of what I was talking about and referenced a movie I liked. What I look for is a doctor that will explain what they want to do and why, that will listen when I have questions or issues. Someone who works with me rather than just "on" me. Someone who treats me with respect and dignity. Someone who is genuinely intent on my health. I maintain that's the kind of doctor I look for, what I think a doctor should be.

I should probably admit that effectively a professional skeptic, that I make my living questioning experts, challenging decisions, validating assumptions. Not because I don't respect experts, but because (a) everyone makes mistakes - the closer you are to something, the more easily you can mislead yourself (It's why I so treasure my novel reviewers.), and (b) if you're doing the right thing, you should be able to demonstrate why - which is really part of the scientific process, being able to hold up to scrutiny. In my world, an amazing (even frightening) proportion of decisions involve something called "engineering judgment" - like the "fact" that the foam impact couldn't have damaged the tile sufficiently to be dangerous on STS-107 (Columbia).

My father was a biologist. If there's one thing he taught me, it's that absolutes in biology are few and far between, so judgment is part of it. That doesn't mean that doctors aren't experts, who worked long and hard (amazingly so) at great expense in both money and time to get where they are. They absolutely are. It's just that people are amazing diverse critters and a jillion things that don't fit neatly with what's gone before.

When I wrote that post, the Mother, who is a doctor, pointed out that expecting to convince every patient of the right thing to do just wasn't feasible in many cases since many people were incapable of listening to reason or appreciating evidence no matter how compelling. And that a great deal of time can be wasted trying to do so. Almost immediately, on my other blog, Ask Me Anything, someone asked about the repercussions to other children of unvaccinated children. She could not have asked for a more excellent example for vaccinations are something that, for study after study, have been proven unconnected with autism, that have changed drastically the survival of children all over the world by protecting them from once ubiquitous disease, that still are seen as a bogeymen by people who should know better. She also pointed out this excellent rebuttal to the article I cited which, I might add, I agree with.

I have to concede the point.

So, I'll expand on my description of what I want in a doctor by what kind of patient one needs to be to make the partnership work. Because it's not a partnership if both aren't pulling their weight.

  • You have to respect their expertise. I question experts, but I shut up if I they have a solid story and I don't challenge them unless I have cold hard facts on my side or uncover a pretty sizeable hole on their part. If they got the data or a reasonable explanation, I thank them and move on. I never assume they're wrong and the same is true of doctors. If I get to the part where I find myself doing so (i.e. many screw-ups), it's time I looked for a second opinion or a new doctor.
  • I do my homework. I'm much more likely to ask worthwhile questions of a doctor (or an expert) if I know my symptoms, what my body's done before, my family history, did some information searching at reputable medical sites and took the time to get educated. If I've done so, they can save themselves the trouble of explaining the obvious and we'll both use our time more effectively. If I do have to question something, it will be for a valid reason.
  • I listen too. This kind of ties in with the first one, but it's worth noting. A treatment, no matter how well explained, is useless if I don't follow it. If I've come determined that I know more than the doctor, all of their knowledge and science won't do any good. If I refuse to hear what they tell me, I'm wasting both of our time. And I'm not doing my part of the partnership. I have to not be a moron.
  • I have to do my part. The appropriate treatment might actually be instructions for me to take to fix my own problem (lose weight, stop smoking, walk around once in a while, cut the salt); whether I like it or not, it's likely to help me help myself. They can't wave a magic wand and undo all the damage I do to myself. If I go into the doctor 80 pounds overweight, it's not the doctor's fault I'm short of breath or prediabetic or have elevated blood pressure. And they can't write a script to make that all better. I'm going to have to take steps to fix it or the end result is no one's fault but my own.
  • I have to speak up. Knowing I'm allergic to sulfa or that my daughter's already had shingles isn't going to make any difference to the doctor if they don't know it. It might be buried somewhere in my chart (my pediatrician's have been digital for years), but the doctor has dozens if not hundred of patients to keep track of and a limited time in which to do so. I, on the other hand, have first hand knowledge that won't help the doctor if I haven't fully shared it. If I'm prescribed an antibiotic I don't recognize for the ear infection, I should make sure it doesn't have sulfa in it (which has happened to me). They are experts, but they're only human. They have a mob of patients to look out for. I only have me and my closest family.
  • I have to be realistic. There's a limit to what they can do. If my father doesn't find out he has colin cancer until it's at stage four, I can't blame the doctors if he doesn't. He might, sure, but I need to appreciate that, in order attempt it, he's going to go through hell, it's going to be expensive and dangerous and uncomfortable. It's going to be a major factor in his life...and it still might not work. Or work indefinitely. If my baby is born weighing less than 19 oz, odds are good she won't survive and, in order to try to keep her alive, she'll spend months, maybe years, in intensive care, that it will be lonely and painful and miserable, a rough way to live your first year. If she survives, she'll likely to developmentally challenged and struggle all her life. And all that effort still might not be successful. Sometimes, when the situation isn't nearly that extreme, things happen and, despite our best efforts, someone dies. That's biology. There's an element of crapshoot despite all our modern medicine.
I still believe in a doctor who respects me, but I can't get there without respecting the doctor as well.

P.S., I read an interesting article in the New York Times today about getting support from others, even if you have something obscure, through the information superhighway.

14 comments:

  • Roy
     

    I had to learn a lot of that the hard way. I had two heart attacks in 1999; one in July and the other in December. The July one was so minor that by a week after I was out of the hospital I was back to my old behaviors.

    When I was in the ICU after (or during) the second one I learned that they were going to have to schlep me up to Miriam hospital in Providence, and I started to resist. Why couldn't they do this in Newport, how the hell was I gonna get back to Newport after they were done (at this point they were talking about doing a catheterization to check things out and maybe putting in a stent). I wasn't happy, but I didn't feel like I had a choice. But after they took their pictures via the catheter, it became obvious that I was going to need bypass surgery (it ended up being 5 arteries bypassed).

    It was at that point that I stopped resisting and let the system take over with my cooperation. It finally became clear that I could no longer control the situation, but they could, and to my benefit. As ithappens, everybody told me everything I needed to know, I was fully informed as to what was going to happen and what effect it would have on me.

    If anything, they were so matter-of-fact about it that it felt like nothing really major, nothing life-threatening, was going on; it was just routine surgery. It wasn't until it was all over and I was back home (again so routine; I only spent 5 days in the hospital after the surgery) that it dawned on me that this had been open heart surgery! When we were kids we watched Ben Casey and Dr. Kildare, and on those shows back in the long-ago '60s, open heart surgery was major, life-threatening stuff, and you could die on the operating table! But by the time I realized this it didn't matter any more; I was home, resting, and signing up for rehab.

    So by listening to the Dr.s and doing what they needed me to do, I saved myself a lot of stress and potential fear. I just had to learn that the hard way.

  • Stephanie B
     

    But did you make changes in your own behavior?

  • Roy
     

    Oh yeah! The big change was quitting smoking, and they helped with that - Zyban to counteract the anxiety caused by nicotine withdrawal, and threats from both my primary care doctor and my cardiologist to drop me like a hot rock if I ever took up smoking again. Heh, heh! Plus my eating habits are different, although I've always pretty much eaten a healthy diet,. The problem was genetic (a propensity to create too much cholesterol on my father's side of the family) rather than diet-induced. And of course you know about me and hiking all over the place; that happened before the heart attacks, too.

  • Stephanie B
     

    And that, Roy dear, is what I'm talking about. I'd be willing to bet (just as I knew patients had horror stories), that doctors will could come in with stories of patients trying to sneak cigarettes into an iron lung or angry young drug-using mothers blaming doctors for their underweight babies.

    I knew, before I asked you, what your answer would be. flit is doing the same thing now.

  • Aron Sora
     

    Off Topic:

    Will this effect you?

    http://www.spaceref.com/news/viewsr.html?pid=31495

  • Stephanie B
     

    Actually, Aron, I have a secret clearance and NEVER release anything proprietary or sensitive. I especially don't release operations data as it happens - that is a job for the Public Affairs Office (so, yes, it applies). Anything I tell you you can find in the public domain. I might just be able to put it in a different context.

    Except my opinions - those are mine and, until I put them here, aren't google-able.

  • Aron Sora
     

    Clearance must be the coolest thing ever.

    I'm sorry, I just saw some bloggers ranting about this new letter and got worried about this site.

  • Stephanie B
     

    Aron, that policy has been around for as long as I have (long before I had clearance). The only difference is that emails, IMing and twitter (and the like) are far more prevalent.

  • The Mother
     

    Horror stories? You want horror stories?

    There was a lady at the VA who blew her nose off when she lit a cigarette WHILE on her nasal oxygen.

    And the massively obese patient who showed up in hubby's office with a double-huge coke from KFC and tried to explain that she just never ate, she couldn't figure out why she never lost any weight.

    And the 12 year old I delivered, who had no idea she was pregnant.

    Yep, we have horror stories about the ignorant folks who take no charge of their own care.

  • Stephanie B
     

    I didn't doubt you had them, the Mother.

    Though I would have to ask how the parents were absolved with the twelve year old kid...

  • flit
     

    quitting smoking is going to be my next big challenge *sigh*

    still 50 lbs to lose in the meantime though

  • Stephanie B
     

    No kicking yourself in the butt. How much weight have you lost since you spoke to your doctor in April? 50 pounds? 60? You've done GREAT.

    Giving up smoking is a good plan, even though it's a big challenge.

    But you are taking steps to improve your health. AND you are reaping some of the rewards - how long since a FDGB?

  • Bob Johnson
     

    Hey I used to have Top Secret Clearance when I worked in a government building, it was actually called Top Secret Clearance. As far as the Doctor thing goes, we have very little choice up here in Canada, you get who is available, I used to have a very good one then she went into teaching and then I got a dude, who's manner was icky, lucky I don't see him but once a year.

  • The Mother
     

    I didn't absolve the parents of the 12 year old. I hold them absolutely, directly responsible. In that case, and up to the age of reason (in my experience, somewhere around 25), the parents are absolutely responsible for maintaining their children's health.

    That includes sex ed and the appropriate tools to deal with it (like CONDOMS). And don't get me started on the parents out there of massively obese kids, who just wring their hands.

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