If only it were so easy...
Via our Family-to-Family Resource Network, the most active support system on the web for families faced with a diagnosis of hydranencephaly, there have been many instances of families receiving such horrible, devastating news from doctors who really seem to have a different outlook on little ones with hydranencephaly... an outlook that really isn't much of an outlook at all, but rather a pretty dismal prediction. We all realize that doctors exist to provide a medical perspective on all things that ail us, but why should it be so horribly delivered each and every time? And even more puzzling is why the many "miracles" that exist are written off as figments of imaginations that run wild in parents that are clearly (according to the professionals) in shear denial of the "facts"...
I'm not entirely sure that doctors always know how to be honest, without being overly critical and/or harshly demeaning. For example, if they do not know the answers, why not just admit it... why can't they simply say, "I don't know!" I wouldn't be offended, they're human and not Google... they're not expected to know everything on the planet. And being the parent to a child living with a rare condition, affecting one in 10,000 births such as hydranencephaly, I expect most people to not be entirely sure of the circumstances and especially to not have all of the answers. Instead of feeding me a full paragraph of nonsense that doesn't really accomplish anything beyond totally ticking me off, and stripping me of the strands of hope I'm clinging to, please just swallow your egotistical pride and admit that you haven't got the slightest clue what to expect and you definitely do not know how, why, or when so-and-so is going to happen! It's perfectly ok by me...
So, here's an article explaining Why Good Doctors Give Useless Answers from Dr. D, MD... that's right, straight from the horse's mouth:
Why good doctors give useless answers
by Doctor D, MD
Before he tells you how to get a straight answers from physicians, Doctor D is going to stall for time by explaining why doctors give vague answers.
Why would a good doctor give useless answers?
1. There is an answer, but your doctor doesn’t know it. Don’t be hard on doc for this one. There is no MD in the world that knows the entire breadth of medical knowledge. Some docs pretend they do. Trust me, they’re faking it. While it may not help you “I don’t know” is a refreshing answer to get from a doctor. MDs don’t often admit this.
2. Your doctor knows the answer, but it is too complicated to explain. A lot of the physical processes doctors think about are pretty complex. Translating all the technomedical concepts into layman’s terms to sensibly explaining it would just take a lot of time and bore you to tears, so the doc just gives you a vague answer instead.
3. The answer depends on a lot of variables. Predicting the course of an illness or recovery can be tricky. A lot of things that are in our control and out of our control can make a straightforward “here’s what to expect” answer impossible. Doctors are busy. It would take a lot of time to explain all the variables. So they often dodge any answer that asks they explain the future.
4. There is no answer. You’d be surprised how many of your questions just don’t have have answers. Doctors have no idea of the answer and no good way of finding out. Sorry! Most patients (and quite a few doctors) get unnerved at the amount of real uncertainty in the world of medicine. We often cover the uncertainty with total bullshit. We make up things that sound intelligent. For example: “Probably a virus …” is secret doctor code for “I have no idea why you feel this way, but it probably isn’t serious.”
5. The answer went right over your head. The doctor did answer your question. Doc just said the answer in technomedical jargon that made no sense to you. While you may have technically gotten a “straight answer”, the doc replying in a foreign language you don’t speak really doesn’t count.
6. The answer doesn’t matter. “Look, you patient, I give out info on a need-to-know basis, and you don’t need this answer!” This is probably the root of all vague, dodgy answers given by doctors. We don’t think the answer is important for you to know. It won’t make a difference. Answers take time and energy that might be spent on something productive. “Trust me, if you needed to know the answer I would have told you already!”
All doctors dodge questions!
Doctor D does it too. Some questions really aren’t as important as others. We are busy and if we took all the time to answer every question we wouldn’t be able to actually help many people with with what’s wrong.
And not everyone wants the full answer.
As a young physician, Doctor D actually tried to fully answer every patient’s question. He looked up answers. He explained complex medical processes and variables. He educated people on uncertainty. And you know what … nobody liked it! Patient’s eyes would glaze over. Doctor D was constantly running late. His patients didn’t always want to get the full answer.
When he switched to need-to-know answering his efficiency improved and his patients were happier. Yes, a lot of people are very satisfied with vague meaningless answers. Not everyone needs the full truth. Some people just needed to know I heard their concerns.
But, obviously not everyone is happy with non-answers from doctors. Doctor D’s email is full of desperate patients complaining that their doctors really aren’t answering their burning questions.
So we have a problem.
Full, straight answers to every question would take so much time and energy that the medical system would grind to a halt, but some of your questions need full answers.
Doctors try their best to help filter what answers you need most, but in the end it is only you who can say what you really need to know.
To the doctors I see: I assure you, that if I take the time to ask the question... it's a need-to-know basis, not for my waste of precious time or energy expulsion! I do not believe that the doctor should determine what I do and do not need to know, especially when it comes to my medically fragile child. How do you feel about this? Would love your input in the comments below...