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The Fact About Facts

April 29, 2010

By Mark Dunning

Editor's note: This is the first salvo in a planned public debate between Mark Dunning and Jennifer Phillips, the two primary contributors to this blog. The ideas expressed in the posts during this debate will be purposely provocative and unfinished to invite a response from the other party. We hope you find the discussion valuable.

"Facts all come with points of view
Facts don't do what I want them to"
- Talking Heads, Crosseyed and Painless lyric

I know Jennifer will nod vigorously as she reads this, but I have a problem with facts. OK, that's not entirely true. While I've never met a footnote I like, I actually prefer facts to the alternative. My problem with facts is that, as the Talking Heads sang, facts don't do what I want them to. More specifically, facts don't give hope. At least that is true when the fact is that there is no cure for your loved one.

Many doctors and researchers don't do what I want them to do, either, which is give hope even if it is not fact. Now let me make clear that I'm not advocating false hope. I'm simply saying that just because something is not fact should not exclude it from the doctor/patient or researcher/affected person discussion. All too often, however, I find that doctors and researchers are like Dragnet. They just want the facts. But for Usher syndrome families, the facts are grim:

  1. The fact is that there are no proven treatments for Usher syndrome. There are some regularly prescribed treatments such as vitamin A, DHA, and sunglasses, but there are no definitive studies proving their effectiveness in treating individuals with Usher syndrome.
  2. It is also fact that while there are a number of potential treatments in development, none of those treatments have been used to successfully treat Usher syndrome. Not even in testing or clinical trials.
  3. The fact is that we don't even have a good animal model for the vision phenotype in Usher syndrome. So those potential treatments under development have not been proven to treat Usher syndrome successfully even in an animal.
  4. The fact is that these treatments under development are, depending on the treatment, 5-10 years away from helping you or your loved one, but we don't know for sure when, or if, they will ever arrive.
  5. The fact is that we don't know enough about the vision loss associated with Usher syndrome to know for certain the rate of deterioration that any individual faces. In short, we don't know when, or even if, you or your loved one will lose their vision.

So when a doctor communicates to a family using just the facts, it can lead to conversations like this:

Family: OK, I (or my loved one) have/has Usher syndrome. Is there a cure?
Doctor: The fact is, no there is no cure.
Family: Are there any treatments?
Doctor: The fact is, there are no proven treatments.
Family: Will there be any treatments soon?
Doctor: I don't know. There are treatments being developed but none have been proven to help even a lab animal with Usher syndrome. There may be something in the future, but I don't know when.
Family: Well, how long do we have before I (or my loved one) lose vision.
Doctor: I don't know.
Family: Well, is it five years? Ten years? Fifty years?
Doctor: It could be any of those. I don't know.

I know that little dialogue made Jennifer's blood boil, but the fact is, that is exactly the conversation a lot of families have with their physician. Look, doctors are generally good, kind people who want to help others. It is their zeal to do no harm that leads them to stick solely to the facts. If it can't be proven, it can't be trusted to be safe. I get that. My point here is not to make doctors appear inhuman or unkind because I have found them to be quite the opposite. The point here is that they appear inhuman and unkind when they stick solely to the facts.

I have found researchers to fall in to a similar trap. Researchers are loathe to discuss any research that is currently underway because until the results are not only in but have been peer reviewed, they can not be trusted to be fact. Understandable. This is especially true when discussing research done by someone else because, obviously, if you're not doing the research and the results have yet to be published, you can't possibly know the results.

Here's the problem. Many researchers take this secrecy to the point that they won't even discuss what they or others are working on. This secrecy leads families to one of two conclusions. Either 1) nothing is being researched or 2) by withholding information, the researchers are more concerned about their projects, their funding, and their legacies than they are about the families that could benefit from the research.

When you are dealing with a currently incurable disease, the only thing that keeps you going is hope. You live on the hope that there will be treatments in the future, that there will be a cure in the future, and that, ultimately, there will be happiness in the future. This dedication to fact builds a world where distraught families can not find out about current treatments or treatments under development from either their physician or from the very people doing the research. In other words, the doctors and researchers dedicated to improving the lives of these families in the long run, are doing exactly the opposite in the short run by sticking strictly to the facts.

Worst of all, when families figure out that they are not getting the full picture, they feel betrayed. This leads to families distrusting the 'experts' with whom they have spoken who either failed to mention certain treatments, whether they be underdevelopment, proven or not, or simply didn't know them. Either way, already vulnerable, emotional families get lost. After all, if you can't trust the experts in the subject matter to be, you know, experts, where do you turn? Talk about feeling hopeless.

OK, I'll stop ranting for a moment. As you probably suspect, I have a lot more to say on this matter, but I need to give Jennifer time to respond. Just so we're all clear on the sides we're taking. I support hope. Jennifer does not. Just kidding. You're turn, Jennifer.

Oh, and please note that no footnotes or references were harmed in the writing of this post.

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