Balanced and Nuanced Medical Advice

Recently, a parent of a baby with a congenital hand difference shared this on social media after their first consultation appointment with a hand specialist: “He’ll be able to do everything with a thumb and pinky pincer grasp/grab…. The beautiful thing about being born this way is that he will adapt in his own way as he grows so no need for therapy…. Our docs best advice: forget he has it, allow him to do everything he wants, never limit him.”

In contrast, some older adults with limb differences have shared that when they were younger, hand specialists told their parents to expect that they likely would have difficulty with everyday tasks such as driving a car, participating in sports, performing self-care tasks, or typing.

In both of these cases, the doctor unfortunately is missing the mark due to lack of information and incomplete understanding of possible long-term effects of limb differences.Most parents not only can handle detail, nuance, and uncertainty, but typically prefer to have issues laid out on the table ahead of time rather than discover later that the rosy or doom-and-groom predictions they were given were inaccurate.

By contrast, an older friend recently received a diagnosis of a hiatal hernia from a gastrointestinal specialist. When discussing what she could expect, the doctor’s response was that it might never cause her problems, or that it might cause certain symptoms. He then reviewed interventions that could be taken, should those symptoms occur.

So the physician was neither saying that everything was likely to go wrong, nor that everything would go right. Instead, they laid out the possibilities along with a decision tree: perhaps you won’t have a problem, or perhaps you will. If you do have a problem, here are the types of problems you can expect, and if you encounter those problems, here the steps you might take.

Why is it that the GI doctor is able to give this kind of nuanced response with a decision tree, but the hand specialist could/did not?

At the very minimum, hand specialists should be able to advise families with some certitude that over the course of the child’s growing up, there likely will be some degree of social emotional issues for both the child and the adult and recommend resources and websites that address those issues. More immediately, the physician can focus on functional issues, predicting that the child likely will use the affected side(s). They can mention that if for some reason the child does not naturally incorporate the affected side into their movement patterns, occupational therapy could be very helpful in addition to certain kinds of adaptive equipment.

Beyond that, the physician can suggest that while the child will be able to do many things, there likely will be some things that they find more difficult than do other children. In those situations, adaptations may suffice, whether with or without adaptive equipment. In addition, the physician should be able to advise parents that they will want to watch what compensations the child uses for the missing digits or partial arm, both on the affected and unaffected sides, so that they do not compromise the biomechanical integrity of the stabilizing muscles. That is, the body is designed to be symmetrical and it is important for parents to understand from their child’s young age that compensations on both the affected and unaffected sides can have long-term consequences. Of course, this is a bit of a tricky thing because usage patterns get set early in the body and become ingrained, but they don’t always show their effects until much later in time. Unfortunately, by the time parents may become aware that the child has developed biomechanically taxing usage patterns, long-term damage may have already been done, potentially causing pain, functional limitations, and/or overuse syndrome. At that point, it can be very difficult to retrain the brain/body to reduce the strain.

Of course, with the exception of the social emotional issues, many of the above issues are possibilities, not certainties. But not allowing parents to understand potential aspects of the life long trajectory of adapting to a limb difference does them a significant disservice.

Maybe it’s unreasonable to expect that a hand surgeon on a consultation with the parents of an infant will be able to go into this amount of detail, but at the very least they should be able to refer parents to online and print resources. Perhaps a team approach would be preferable, where the parents would have follow-up visits with a nurse, social worker, or occupational therapist to review some of these issues. But at the very least, the hand specialist should be able to do better than deliver an oversimplified message to the family: “Forget he has it, allow him to do everything he wants, never limit him.”

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