Thursday, December 22, 2016

Imposing (Narrative) Structure on Chaos

I planned to write more about habits today, but then it got really nice in the middle of the day, and I went for a walk, and I found myself listening to Part I of the 3-part Freakonomics series on Bad Medicine like WHOA.

Medicine, and bad medicine (shake it up) are topics about which I have a LOT to say. So, habits and Question of the Day will have to wait until next week.

The focus of this episode was on the switch that’s really only happened in the last 25 years, from “eminence-based” medicine to evidence-based medicine. Stephen Dubner commented early in the episode that most of us want to think that our doctors are “If not infallible, then at least reliable” — but is that really true, he asked?

Boy, howdy do I have thoughts. Lots of them! So, let’s impose a little narrative structure on this post by way of a list. I give you…

Five Things I Have Learned About Doctors and Medicine By Living My Life

1. Doctors are people.

My dad is a doctor, and to this day I call him with basically all my medical questions, from “Why is my finger doing this weird clicky thing?” to “Please call me in a prescription for antibiotics I may or may not need” to “They think my son has cancer.” Other people were probably intimidated by my dad (every Israeli who has ever met him has told me, “You know, he could TOTALLY be the President of the United States”), but for me, he’s my dad. He’s really smart, but he’s my dad, and I kind of extended that to all doctors, everywhere. They’re people. They’re not deities, though they often behave as though they are.

2. Doctors are sometimes unwarrantedly arrogant.

I’m not sure that unwarrantedly is actually a word, but it explains exactly what I’m trying to say. Yep, you went to medical school and you know a lot of stuff. Cool. You don’t have to be a jerk and tell me things like, “Your baby may not ever learn to sit up” when he is not even one week old. (Spoiler: my kid sits, walks, runs, talks, and KICKS ASS). I am really, really lucky that my husband and I are educated consumers, because instead of hearing this doctor’s pronouncement as a fact, I took it as a challenge and took my baby home and got him (and me) lots of therapy. I am horrified when I think of what could have happened if we had taken the gloom and doom path this doctor wanted us to take. If we hadn’t pushed Adi. If we hadn’t believed that he would sit up.

3. A doctor who doesn’t want you to ask questions or get a second opinion is not a good doctor.

A doctor should definitely encourage you to ask questions and to fully understand the information you are getting. If you are being treated by a doctor who gets impatient when you ask him or her to explain medical terminology or concepts is a jerk, and you should find a new doctor.

A good doctor will never be afraid of a second opinion.

I have met a LOT of doctors. I have spoken to extremely experienced professionals who were way high up on the totem pole and who still took the time needed to explain things so that I could understand them. I have also talked to doctors who couldn’t understand that the most important person in the room was THE PATIENT, my son, and that they would treat him with respect or they would GET OUT.

When Adi was diagnosed with leukemia, we asked about getting second opinions, about going to Rav Firer, whatever, they told us we could absolutely do that. They also explained to us that the treatment protocol for Adi’s type of leukemia exactly the same at every hospital in Israel and across Europe, and that it was extremely similar to the treatment protocol in the United States. They were happy to sit with us and review the written treatment protocol. They never made us feel like we had to do the treatment in their hospital, although they were extremely clear that we needed to start treatment immediately. Every question we asked was answered patiently and fully. And that was true throughout Adi’s treatment. All two and a half years of it.

4. Doctors don’t know everything.

See above, and also, during our cancer journey, Guy said that the thing he was most surprised to learn was how very little doctors know about some things. Like, for example, what the side effects of steroids will be. “Well, he might be totally manic, or he might be depressed. He could have a voracious appetite, or he might not want to eat at all. And next time, it might be totally different.” Awesome. How about, “Should we give our son cranial radiation?” Well, some studies say, yes, definitely! But other studies say, ABSOLUTELY NOT UNDER ANY CIRCUMSTANCES. There’s a reason they call it practicing medicine.

There was a really fun period of time where we had to stop treating the cancer because Adi’s intestines exploded and he needed emergency surgery and they gave him an ileostomy and he almost died and then he started recovering but not really so they kept not giving him chemo and we had a couple more emergency surges for bowel obstructions and the surgeons were all, “We need to reverse this ileostomy and let him heal and then go back to chemo” and the oncologists were like, “CHEMO IS SO COOL DUDE LET’S DO IT NOW,” and we were so, so helplessly lost, and Guy finally told our oncologist, “You guys need to get your stories straight, because you have destroyed all of our faith in the system by constantly telling us different things,” and there was a big, epic battle and oncology won. Turned out to be a good decision.

5. The best doctors are like the most learned rabbis.

Bear with me. If you are not of the orthodox jewish persuasion, you may not have ever had the experience of “asking a rav” a question. But it’s a thing. People do it. And when you ask a rabbi for permission to do something, the easy thing for the rabbi to do is say, “Nope, sorry, you can’t do that.” It’s super easy to say no. But the most learned rabbis know how to say, “Yes, if you do this, and you do it for this reason and this way, then yes.” And most of the time, people are happy to live with the reason and the explanation, because the answer is YES.

We found that many, many young, less experienced doctors, and even those who were simply not experienced in pediatric oncology, were very happy to say NO. No, you can’t take Adi to the mall for an hour. No, you can’t spend a weekend at home. No, we can’t disconnect him from the port for a bath. No, no, no.

Our oncologist was amazing. He always found a way to say yes. Oh, your son who just had emergency surgery and desperately needs to restart his chemo protocol wants to go to France for a week? Sure, we can do that. Oh, you want to move treatment to Saturday night so that you can be home for Shabbat? We’ll make it happen. Oh, you want to go home for four hours so your son can see his room and check that it’s still there? Go, have fun.

So. These are things I thought. Think. Yeah. And now you know.