Helping Parents Manage Uncertainty

March 5, 2011

How comfortable are we with uncertainty?  I struggle with this question every day.  I treat children with abdominal pain.  Some of these children suffer with crohns disease, eosinophilic esophagitis, and other serious problems.  Some children struggle with abdominal pain from anxiety or social concerns.  I see all kinds.

But kids are tricky and sometimes I can’t pinpoint the problem.  Trudging forward with more testing is often the simplest option since it involves little thinking.  And some parents perceive endless testing as ‘thorough.’

The question ultimately becomes:  When do we stop?  Once we’ve taken a sensible first approach to a child’s problem and judged that the likelihood of serious pathology is slim, when and how do we suggest that we wait before going any further?  This requires the most sensitive negotiation.  It’s about finding a way to make a family comfortable despite the absence of absolute certainty.  This is easier said than done.  Parents can unintentionally advocate for themselves and their worries by insisting on the full court press.  Alternatively they may refuse invasive studies when absolutely indicated.

All of this is for good reason: You can’t be objective with your own kids.

Pediatrics is tricky business and managing parental uncertainty is perhaps my biggest preoccupation.  As I’ve suggested before, sometimes convincing a family to do less represents the most challenging approach.

Image: iStockPhoto


peter elias March 5, 2011 at 10:52 am

All too often we abdicate our role and make NO decision in the setting of uncertainty, relying instead on a protocol or algorithm.

(Evidence based) protocols and algorithms are designed to be tools we can use to inform our decisions. They should not be used as a sort of ‘get out of jail free card’ that excuses us from thinking and then collaboratively crafting a situationally appropriate approach.

Peter Elias, MD

DrV March 5, 2011 at 11:51 am

Agreed. Such guidelines make fodder for plaintiff attorneys when ‘proving’ negligence.

And the decision not to pursue exhaustive evaluations represents a decision, for what it’s worth.

CardioNP March 5, 2011 at 12:46 pm

I think that managing uncertainty applies to any patient or diagnosis.
I personally had an undiagnosed problem, and was basically told by my PCP “you know, you’re in the field, sometimes we don’t know the answers.” That would have been acceptable to me if my pain could have been controlled or my symptoms hadn’t progressed, unfortunately neither was true. I kept pushing for answers and finally got the right diagnosis and the right treatment to fix my problem.
Using this as my background, I now feel better when I tell pts that while I am not always sure exactly what is causing their symptoms, I can reassure them that certain life threatening things or serious things have been ruled out.

Cheryl Handy March 5, 2011 at 4:00 pm

My (admitted) limited experience with peds gastroenterology has involved helping parents through the prepping for upper & lower gi tests. The kid poops (not a technical term) a lot, arrives at the clinic with a pristine clean bowel. No kinks or twists. And the doc comes out with a happy face telling parents the kid is fine. Parents are relieved, go home a bit nervous but don’t want to bother the doc.

Kid goes home, eats food. Belly ache, vomiting and belly swollen. I try to convince parents to get the kids to the ED or doctors’ offices when the kid is an acute condition. But, again, parents don’t want to bother the docs.

I went through similar issues years ago. Born with too much bowel that was not attached to my abdominal wall. Years of stomach aches but no Dr Bryan in 1970s. GPs said I was just a “nervous little girl.” It took college, an acute volvulus that did untwist & emergency surgery when I was 20.

All the testing in the world can’t beat a parent that keeps a journal of symptoms (that the specialist considers significant), focuses on an acute change in condition and moves fast to an ED.

DIY Health March 6, 2011 at 8:03 am

Yes, it is indeed critical what the doctors says. Because parents usually pray that their children are alright. That’s why when the doctors say to them not to worry, they just feel so relieved and hold on to those words and sometimes not willing to get second opinion if the symptoms recur. I don;t know perhaps it’s because they don;t want to spend more money or they are just to confident with Doc.

Seta March 10, 2011 at 12:17 am

That’s right. Parents are supposed to be biased towards getting to the bottom (no pun intended) of a problem their child has (or they perceive he has). Especially if the problem is NOT going away, most parents are not going to give up. Maybe your anxious patients need a referral to a psychiatrist to manage their anxiety? Or maybe they should videotape one of the tummy ache episodes. This happened with my daughter when she had what looked to be a movement disorder. I took her to the neurologist many times and she did a bunch of tests to no avail. No diagnosis…ultimately another, more senior neurologist told us, don’t worry, movement disorders don’t cause brain damage, they’re just a nuisance. He wanted us to stop investigating. Um okay fin. During her next episode, I finally got the video camera out and went to the ED of another hospital. They took a look at the repetitive movements and told me that they looked more like seizures. And thus a diagnosis was born…
It might be better to ask your patients to videotape symptoms or keep a journal, so you can make a better judgment before you ask them to give up? I’m sure a videotape smells better than a specimen, too! I would have appreciated it if our neurologist asked me to videotape instead of letting me get to the point where I had to do it out of frustration from his lack of support.
Ask them to partner with you in their child’s care. You’ll get further. Ask them to do some google research on the things that they find the most upetting. They will feel better, like they are doing something to help to be part of the solution.

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