After the whirlwind that was last week, it was nice to have a relatively quiet week at home. We spent a lot of time doing chest PT to help Lemon get over his cold. He's most of the way there now, and at our clinic visit on Friday the doctor said that he thought Lemon was close enough to clearing it on his own that he wouldn't prescribe prophylactic antibiotics (to prevent a bacterial infection from taking root in the extra mucus from the cold). There isn't a whole lot of evidence that the prophylaxis does a lot in this case anyhow, so I was OK with skipping it for the time being. Since Friday Lemon has mostly kicked the cold, so I think it was the right call. Heck, I haven't even fully kicked the cold and I don't have any other health issues going on. I will be glad when both Lemon and I are finally free of it though. Then we can focus on the more important matters at hand, like teething, which is in full swing now. Lemon has a second tooth that has cut through on the lower jaw, and it looks like the two upper ones should be with us soon.
Since it was a relatively quiet week on the home front, I thought I would use this week's post to introduce a couple of topics that caught my attention at the weekly "Grand Rounds" meetings at the hospital where I work. Both of these have to do with the idea of patients and doctors working together to make decisions about care options. This is a topic I really never thought about until Lemon was born. Until that point, my limited experience with the medical profession was that if you thought something was wrong, you went to the doctor, the doctor told you what was going on, recommended a course of action, you did it, and that was that. It turns out that in almost every doctor-patient interaction, there are a lot of decisions to be made, and in many cases the way forward isn't obvious. Should another test be run? Should a one treatment be favored over another? Should something be treated immediately, or given some amount of time to resolve on its own? When you are in generally good health, and have generally uncomplicated medical problems, these things don't tend to come up much. But, when you have a complicated disease like CF, they come up all the time, at pretty much every doctor's visit.
The first talk I heard brought up a group called Informed Medical Decisions, currently conducting research on the best ways to provide patients with
information to allow them to participate in decision-making along with their care team (there is a video here if you're interested). The second talk I heard was about another organization, called Choosing Wisely. In a way, this organization is the mirror image of Informed Medical Decisions. Choosing Wisely is encouraging doctors to take an active role in reducing medical expenditures by reducing the use of tests and treatments that are unlikely to be productive. They are doing this by having doctors (in the form of professional organizations like the American Academy of Pediatrics) come up with lists of procedures that should not be the rote standard of care. The idea is that this will make it easier for individual practitioners to follow the age-old guidelines of "don't just do something, stand there" in cases where it's appropriate. Along the lines of helping patients make informed decisions, Choosing Wisely has also partnered with Consumer Reports Health to publish information sheets for patients and their caregivers on a variety of common medical situations, like lower back pain.
As someone who now has to make a lot of medical decisions, I think it
would be hugely helpful to have had someone else go through the research
literature on each issue that we're facing, summarize the best studies,
and give that to us in a neat little package to guide us. Of course,
now that I've begun delving into the medical literature myself, I can
see that there are some questions that seem to be pretty clearly
resolved, while others are still murky. But, even in the cases where
the possible benefits of a treatment are murky, the decision aide could
provide clear information on costs (I know, the very idea is
un-American) or risks associated with the procedure. Hopefully some day, resources like these will be available to members of the CF community. Right now, I feel like we're all flying by the seats of our pants.
I did have an interaction with Lemon's doctor at this most recent visit that reminded me very much of Choosing Wisely, though. Like many kids with CF, Lemon's vitamin D level was low when it was first tested back in Boston. So, it was on his schedule for this visit to have blood drawn for a follow-up test, to see if the extra Vitamin D supplements we've been giving him have boosted the level up to where it should be. I wasn't particularly eager to have the test, since I was pretty sure that even if they found the level was low again, the recommended course of action would be to test again in 3 months and see how things stood. So, I was very happy when Lemon's doctor said, "Let's just skip the Vitamin D test. Because I'll tell you what will happen--we'll test it and it will be low again. So let's wait until the poor kid has actually had a chance to be exposed to the sun, and then test it." And, lucky for us, it is forecast to hit 60F this coming weekend, so Lemon might actually get exposed to that great glowing orb in the sky for a sustained period. The last time that happened was literally half a lifetime ago, from his perspective!