Monday, September 21, 2009

Second Guessing the Doctor

It is challenging as a parent to get medical advice from doctors that you don't believe you need to follow. Not that you believe it would be harmful to follow the advice, just wasteful. How can you avoid feeling like a terrible parent if you choose to ignore the physician's advice? What if the improbable occurs? It will be all my fault!

That psychology costs us a lot of money in health care. I've felt it many times in dealing with my own children.

My third child has spina bifida. This health condition carries a lot of risks. On the spectrum of spina bifida kids, my child is very blessed and is in excellent condition. When therapists tell us we should engage or this or that treatment or should have visits on a weekly basis, my wife and I look at each other and shake our heads. We suspect that some of the treatments are unnecessary, but we don't dare say no since we aren't experts. What if we're wrong?!

My fourth child was affected by jaundice after he was born. That is a high level of bilirubin in the blood that causes the skin to turn yellow and can result in brain damage. Yikes! Fortunately, the treatment is well known and simple. The child is placed under special blue lights that break down the substance in the blood and keeps him safe. In nearly all cases, the condition is temporary.

However, the hospital only had these lights in the ICU. That meant that the cost of his hospital stay was through the roof. ICU isn't cheap. And they gave him the attention that a baby in the ICU should receive! But he didn't need it. We would have been just fine in taking the lights home (as they eventually allowed us to do) and brought him in for daily blood tests. But the doctors had to be excessively cautious and so they ran a lot of tests that, in hindsight, didn't provide any value.

How could I tell them no, even though my wife and I agreed that the situation was absurd? We didn't dare! What if something DID go wrong? Would they sue us for being bad parents and take away our children? We had good insurance and so we just rode it out, bit the bullet, and paid our share. In the end, though, a lot of money was spent providing medical care that didn't enhance or prolong life.

How can we empower patients to say no? Unless we address this psychological challenge, we can't.