Discarding Information

We draw a retina with vessels tracking from the optic disk to the periphery. Their child, if she survives, may have trouble with vision. We draw3 stick figures of equal size and color one in. About one-third of children with hypoxic ischemic encephalopathy and no clear clinical sequelae will still have problems with development. The images emerge, black lines on white paper. If we communicate clearly, they will understand. If they understand, this information will be important to them. They will take it with them and make good decisions.

Yet here I am, sitting in a hospital meeting room, when a father poses the question “What are we supposed to do with this information?” The room is crowded with geneticists, neonatologists, and 2 parents; all are here to discuss the results of a DNA microarray test. This father’s child has micrognathia, or a small jaw, which obstructed his breathing until plastic surgeons placed devices to lengthen both jawbones. As a neonatologist, I am caring for him while he recovers from the procedure.

The microarray was sent a week prior to evaluate the etiology of micrognathia and revealed a gene deletion never previously reported. The geneticist explains that she is uncertain whether the deletion explains this child’s micrognathia, but she recommends numerous pituitary and kidney tests for other conditions with overlapping deletions (ultimately, the results will all be normal). The geneticist counsels that the child may have developmental disability, ranging from mild to severe. First, the father asks for clarification about the function of a pituitary gland. We draw the gland. The father asks about the probability of various developmental outcomes. We tell him no data exist to answer these questions.

After the meeting, I walk both parents back to their child. The father seems frustrated and, on our way, he quietly slips the stack of printed results into the trash. I am struck by this simple act. Both parents focus on progress day by day as their child learns to eat by mouth. They celebrate each step toward going home. When it is finally time for discharge, they seem to purposefully leave behind the genetic testing results and, particularly, the neurodevelopmental uncertainty.

Discarding information is not easy. As physicians we try to infuse information into the minds of patients and families. When parents can recall information just as we give it to them, we count it as a success.¹ If they make the choices we expect based on the information provided, we count it as an even bigger success. When they recount things differently or make unexpected decisions, we say “they don’t get it.” But what if information is uncertain or ends up being wrong? What if families understand information and it still is not important to them? What if they intentionally work to forget our information? My own family’s experience with medicine, over generations, leaves me wondering what constitutes success.

In 1992, my mother was diagnosed with likely toxoplasmosis early in her second pregnancy. Toxoplasmosis serologies had recently been added to the routine prenatal panel at her obstetrician’s practice. The positive result came as a shock. Her obstetrician recommended she terminate the pregnancy, even prior to the confirmatory testing. She had conceived quickly, so he counseled that she could save worrying about a potentially affected child and go on to have another less complicated pregnancy. My parents were not sure what to do with this information at first. Yet, they felt they should be thankful for the information, which just a few years prior would not have been available, and better do something with it. They terminated the pregnancy.

A week later, the confirmatory test for toxoplasmosis, run by the reference laboratory in California, showed that the fetus was likely unaffected. My mother remembers being angry—that medicine is imperfect, that she had received unconfirmed information, and that she had acted on it. She felt she never had permission to do nothing. Her obstetrician’s stalwart faith had made the medical information seem impossible to ignore. My mother told me this story when I was young, long before I became a neonatologist. I remember wondering why she had acted so quickly. A few years later, my mother told me about her brother Richard. She never said that her parents’ story influenced her pregnancy decision, but I think it must have.

Richard was my grandparents’ first child and was born in 1953, 4 years before my mother. At birth, he was diagnosed with severe hydrocephalus of unknown etiology. In accordance with the recommendations of the time, he was removed quickly from the delivery room until a “decision” had been reached. The physicians predicted profound disability and painted a picture of constant suffering for Richard and burden for my grandparents and any future children they might have. The physicians urged my grandparents to send Richard to a group home and do so as promptly as possible to avoid emotional attachment. This recommendation was standard practice, based on ideas about disability and supporting families that were progressive for the time.² My grandfather, whom my family called Posie, a cardiac surgeon with an almost boundless confidence in medicine, agreed.

However, over the next 15 years, Posie must have come to doubt the efficacy of the intervention to avoid attachment. Soon after Richard’s birth, my grandparents moved from Philadelphia to Brooklyn. My mother remembers Posie making unexplained trips back to Philadelphia, where Richard remained in a group home, with increasing frequency as the years went on. As far as my family knows, my grandmother, Mosie, never saw Richard again. My mother and her sisters learned of their eldest sibling only at the time of his funeral.

I remember Mosie as the baker of butterscotch cookies and the host of our one-of-a-kind Christmases. I also remember an inexplicable sadness that sometimes surfaced when Mosie stared off from the dinner table or became silent on otherwise cheery car rides. Perhaps the avoidance of attachment was unsuccessful for her too.

I can imagine how my grandparents made the decisions they did. They received information from physicians and they followed recommendations. I believe my mother hoped that having even more information—newer information—would save her such suffering.

I wonder how the fate of my unborn brother and hidden uncle may have been different if physicians had explicitly acknowledged my parents’ and grandparents’ right to discard information. What if physicians had acknowledged that the information might be wrong, that information may always be questioned? What if they had acknowledged that the information they provided may not be that important to my parents and grandparents?

Physicians owe patients the best information modern medicine can provide. We owe them the clearest communication possible. Yet, when we look back at medical history, we often observe that information was wrong. We take comfort in how much better our information is today. Prenatal testing is more accurate and genetic counseling is less overtly ableist. We have tests that can diagnose thousands of conditions that would previously have remained unnamed. Physicians have more long-term outcome data now than before. Acknowledging that information today is still imperfect is more difficult. Some information remains uncertain. Some information will ultimately be wrong. Information remains of different importance for different families.

Patients deserve physicians’ humble assessment of the accuracy and importance of medical information, an acknowledgment that the information that seems cutting-edge today may not appear accurate tomorrow. We owe them the respect and space to decide the value of information themselves. Next time I am drawing a retina with vessels spreading from optic disk to periphery or drawing 3 stick figures and coloring one, I will also draw a trash bin in the corner of the page. This is the best information we have right now. Time may reveal it is less accurate than we believed. Your child may have a disability, but she may not. You may care about vision loss, but you may not. You deserve this information, but you also deserve to know it is not perfect. You can choose to discard it.