A Low Cost Solution to a Difficult Problem

September 2, 2010

by Mark Dunning

Jennifer wrote about vitamin A in her last post and gave her opinion on whether or not the studies done to date were enough to warrant prescribing vitamin A in supplement form to patients. My first thought on reading her post was 'Hmm. I respectfully disagree with her.' I know the studies and came to a different conclusion. My daughter takes vitamin A supplements under the supervision of a physician. Please note the last part of the sentence. You should not take my advice on this. Nor, I know she would agree, should you take Jennifer's advice. You should take that of your physician.

That brings me to my second thought. 'Why the heck didn't any doctor ever explain their opposition to vitamin A supplementation to me as well as Jennifer did?' I've talked to a lot of physicians that don't prescribe vitamin A, some who are strident opponents of prescribing it, and none of them explained their reasoning as clearly as Jennifer. On the one hand I'm proud of my blog mate for her thoughtful review but I'm also terribly concerned about it. Like I said, you shouldn't take the advice of Jennifer or me. But if you're not getting lucid advice from your physician, what do you do?

Looking back at our decision, the reason we chose to use vitamin A supplementation was because one doctor took the time, much like Jennifer, to go through the studies with us and explain why he thought these studies supported using supplementation. We spoke to other doctors that did not agree with supplementation, but none of them went through the studies that supported their position. In fact, most of them didn't mention any other studies done at all. They were just worried vitamin A wasn't safe in large doses.

Now being worried that vitamin A isn't safe is a justifiable concern, but they came to that conclusion somehow. They didn't just pull it out of the air. Why couldn't they, like Jennifer, tell me how they came to that conclusion? This left us with the opinion that they either 1) didn't know about the studies and were just winging it or 2) didn't really have anything to support their opinion. But if you read Jennifer's post, you can see that there certainly is an argument to be made against it. So how come, in my experience, was only one side able to make their case?

All of this brings us back to another of Jennifer's recent postings. We have to educate physicians on Usher syndrome and the treatments that are currently available, or might soon be, so they can advise patients accurately and appropriately. But we also desperately need to train them on how to appropriately communicate with patients and that is the focus of this post.

I have a little experience in this area. I have been fortunate enough to be asked to speak on a number of occasions to doctors, nurses, professional staff, and medical school students at Harvard Medical School, Children's Hospital Boston, and M.I.T. These are some of the most prestigious institutions in the country. I'm not pointing that out to brag (OK, maybe a little) but rather to illuminate a fact which I will get to in just a bit. First, here are the things I usually tell them:

We live in a Google world. As soon as you hint that you, Mr. Doctor, suspect Usher syndrome as a diagnosis that family is going to go home and Google it. Even if you don't breathe the term Usher syndrome, they are going to go home and Google all of the symptoms they saw you scribble down and come up with Usher syndrome on their own. Be prepared before you meet with them and give them 'safe' web sites for information on Usher syndrome so you can be confident that they are finding out the information from accurate, credible sources instead of reading it from some crackpot blog. Oh, wait, that didn't come out right...

Make sure the family understands when they will receive the results of tests. This is a personal bugaboo for me. I didn't go for the ABR test of my daughter's hearing because I thought it was like a blood test. I didn't realize we would get the results right then. So I learned about my daughter's deafness over the phone from my sobbing wife. On the flip side, there is no need to get a family all worked up over having blood drawn for a genetic test when the results will not be known for weeks. It's just a blood draw, nothing more.

Schedule a time to meet with the family to discuss the test results when you schedule the test. In other words, don't wait until you get the test results to call the family and schedule a time to talk. Why? See below.

Never give the test results over the phone. Look, I know a negative test for Usher can be given over the phone, but you really need to talk in person with someone if it is a positive result. Heck, given the sensitivity of some of these genetic tests (50% accuracy) even a negative test result might not eliminate Usher completely. This brings me back to point number 3. If you call up a family and say 'Hi, I have your test results. I'd like you to come in to discuss them' the family is going to read in to that. It must be bad. Why wouldn't they just tell us over the phone? So solve the problem up front and tell them before they have the test that they will have to come in to get the results, good or bad, because you never give results over the phone.

Never tell a family their loved one 'failed' a test. This one drives me batty because I know it's used with the newborn hearing screen all the time. Right when mom and dad are basking in the promise of their newborn child, they are told their baby is a failure. No, it's not. You don't fail a hearing screen or an ABR or a blood test. The results are positive or they indicate that we should do more testing. This isn't calculus. You're not a failure if you have Usher syndrome or hearing loss.

After you give the diagnosis, schedule a follow-up appointment with the family. When a family gets the diagnosis they go numb. That first appointment is not the time to discuss how the myosin-7a protein chain operates. Even if you are speaking to a family of genetic engineers, they are not going to hear you or be able to absorb all you are telling them. Answer every question they have but encourage them to ask the same question again later if they need clarification because they will. Then schedule a follow-up appointment with them for a week or so later when they've had time to digest the diagnosis and clear their heads. That's when they will have the best questions and it's a time when they will remember the answers. This follow-up appointment, by the way, could be by phone. Whatever method will most encourage the family to show up.

Tell them what they might do next. Just because there are no more tests to be done and a diagnosis is made isn't the end of the line. Sure, in the case of Usher syndrome there are no certain treatments, but don't shrug and tell them to come back next year to see if their vision has deteriorated. Give them options (like vitamin A) along with your opinion on it. Tell them where to find the studies, the supporters and the opponents. Tell them about research under way or where to find out information about it, like the Usher Coalition site or the Foundation Fighting Blindness. It's alright to give them hope for the future.

Tell the family what that future might hold. This isn't 'you'll meet a tall dark stranger' stuff. I mean tell them the truth and not just about the diagnosis. In fact, the stuff beyond the diagnosis is more important (I'll explain why in a bit). You can and should tell them, Ms. Doctor, about the normal prognosis for someone with RP, and with hearing loss, both with an implant or hearing aid and without, and about the vestibular component. But you should also tell them that most people with Usher syndrome who want to go to college, get married, have kids, and have a challenging career do just that. Again, it's alright to give them hope.

Physicians are responsible for physical well being. They work with the body. But the diagnosis of Usher syndrome is not traumatic for families only because it may portend a life of deaf-blindness in the future. It is traumatic for families because they interpret deaf-blindness to mean a life of isolation and limitation. It's not just the physical results of Usher syndrome that are frightening, it's the potential social and psychological results. Physicians need to recognize this and address it as part of delivering the diagnosis.

Now the list above, to me, seems like pretty obvious stuff. The first time I presented it I thought I was going to get a 'no duh!' type response. I didn't. In fact, I've heard from a number of people that after attending the talk they fundamentally changed their approach to some of their processes. If these prestigious institutions that I mentioned and those that attend them or work for them find this illuminating enough to change their way of doing things, we've got a big problem. If they aren't teaching doctors this stuff, no one is. These are the most forward thinking institutions who, to their credit, are willing to not only listen to some dumb parent but act on what he says. I shudder to think what is going on in the rest of the world.

So back to Jennifer's point about educating physicians. One of the problems is how to do it at a reasonable cost. We could, for instance, hire a blimp to drop Usher syndrome flyers on the next AMA convention. I don't think that's our most cost effective approach. More to the point who is the 'we' that might write up the flyers and hire said blimp?

I think that gets lost in all of these discussions. We all fall in to the 'someone should do something' trap sometimes. We see pictures of floods in New Orleans or unemployment statistics or polar bears swimming where there once was ice and say 'someone should do something.' But who, exactly, is the 'someone' who is going to do something to help educate physicians about Usher syndrome?

Well, I have seen that someone and he (or she) looks a lot like you. You see that list above? Talk to your doctor about it. Make sure he or she is thinking about it. Send them a link to this post. Or the next time you see them tell them that you read this fascinating article by this brilliant author who suggested that you should never give test results over the phone and ask them for their thoughts. Put the bug in their ear. Make them think about it. They might not agree with all of it, but don't assume they are thinking about it. They weren't thinking about it in the group I met at the places I've spoken, I can tell you that, and they are just about the best in the world.

The point to all of this is that there is a low cost way to educate the physicians that are diagnosing Usher syndrome that can began immediately. It's you.

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