What Kind of Patient I Am

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.

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What I Look For in a Doctor

I read this article in the New York Times this morning and I loved it, so, naturally, it's the story I'm going with today. It's all about how a doctor can and should become a partner rather than a dictator when it comes to medicine, should be letting the patient call the real shots and, rather than demanding compliance, the doctor should be educating the patient so that the patient can make the best decision.

Now, I'm not a doctor. I don't doubt that it's likely not that easy and that any number of patients aren't going to do the right thing no matter how carefully their educated. But I understand and encourage this concept anyway.

Let me tell you one reason why. People in my family get weird stuff. We get shingles when we're children. We get mold that grows in one's lungs. We get meningitis that attacks heart valves instead of the brain, drastically delaying diagnosis. We are weird. When I got married the second time, I married into a family that, oddly enough, had the same sort of unusual diversity - just different problems.

I've learned the hard way that I better be an informed patient, question doctors, insist on knowing what they're suggesting and why and objecting if I know better. Why? Because they can't know my family history, my history as well as I do. Because, in the end, I'm still responsible for what happens to me. Because my children can pay the price if I'm not careful.

I have dozens of stories (I suspect most of you do, too). Like when my cousin almost died from an infection after an in-grown toenail operation and my aunt insisted on taking him to the hospital when his doctor said NO (he had a fever over 106). She'd been trying to get the doctor's attention for two days and the poor kid was on IV antibiotics for six months afterwards.

But there's something more as well. There's something empowering in being part of the decision, to being listened to. Now, you're part of your recovery, your treatment. That's certainly part of it. More, though, you don't sacrifice your humanity, your dignity. That may sound like a small thing, but I think it's a big thing.

There's a favorite movie of mine starring the ever-charming Carey Grant called People Will Talk. It wasn't just that he played the kind of doctor referred to in the article I linked, it's that he never forgot these were living breathing people with minds as well as body needing nurturing. A little bit of dignity can go a long way. Let me give you an example.

My husband's great grandmother was diabetic and blind, a remarkable woman. With eleven children (ten of them girls), she worked as a seamstress and managed to take care of all of them even after her husband shot himself to death when they were teenagers. Books were her great pleasure. So the blindness was kind of a double blow. As it was described to me, most of her daughters went into nursing and, for the last decade or so of her life, she was passed from daughter to daughter, told what to eat and what to do, managed and coddled as if she were a child. Her brain worked fine, mind you, but she was glad to go, I think, when she left. She was quite a woman, but all of her capable children dismissed her as if she were incapable of thinking for herself.

Counter that with my aunt Sue and my grandparents. My grandfather died of asbestosis five years ago or so. Before he died, he couldn't walk to the door without his oxygen, but my aunt reworked the house so it would have ramps, got him a scooter and a portable oxygen tank. When issues for the house or anything else came up, she talked to him. She let him look through the mail first. His brain worked fine and she made sure he knew she knew it. He never lost his dignity. My grandmother, who's brain hasn't faired quite so well, is still listened to, is still cherished, is still given choices and control. One thing she asked Sue is never to go to another hospital and Sue has moved heaven and earth to get her the medical care she needs without going to a hospital. I find it particularly interesting that there's no bitterness at the restrictions and extra work for Sue. She's happy my grandmother is still there to be loved and cherished.

Sue would have made one hell of a doctor.

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