Have you ever heard of patient profiling? It takes place when medical–and mental health–professionals make an assumption about someone seeking care based on their appearance, race, gender, financial status or even the kind of illness they have, such as mental health or substance use problems. The first time I came across this was in an article written by Pamela Wible, MD, who recounted patient stories where the personal judgment of a medical person resulted in poorer care. She worried that, similar to racial profiling by police, patient profiling is more common than we want to admit. And it undermines care.
When I first heard about patient profiling, I immediately thought of my younger son. A few years ago (when he was in his early 20s), he woke up on a Sunday morning with horrible vertigo, He couldn’t stand, couldn’t focus and couldn’t drive. I took him to the local emergency room where they asked a series of routine questions: Are you on any medication? (No.) Have you ever experienced this before? (No.) Have you had anything alcoholic to drink? (Yes, one beer last night with friends. I was the designated driver.) Unfortunately, the questions stopped after he said he had had that beer the night before. He was given intravenous fluids, allowed to rest and sent home. The next day, his very irate primary care doctor sent him to a different emergency room where he was treated for inflammation of the inner ear.
For my son, staff at the first emergency room decided that a young adult in his 20s experienced vertigo because he had been drinking. They made a snap judgment and his treatment was delayed. To this day, he feels a general mistrust of emergency room staff.
For children and youth with mental health needs and their families, patient profiling happens far too often. It happens in the emergency room and it happens in visits to medical specialists. One mom, whose daughter had both a diagnosis of depression and frequent migraines – for which she was seeing a specialist – waited four days recently in the emergency room because no inpatient beds were available. She was told that her daughter couldn’t receive migraine medication while waiting because that was drug seeking behavior And it was probably part of the bipolar anyway. The mother was frantic when she called us and very frustrated that her daughter’s care was all being lumped under mental health. She felt the emergency room staff had stopped their assessment of her daughter’s needs after they heard about the bipolar disorder.
This doesn’t just happen in emergency rooms. It happens with medical specialists who think that mental health concerns have caused medical symptoms. It happens when doctors call parents “enmeshed” or “co-dependent” and don’t see them as a resource and partner but instead as part of the problem. It happens when young people are seen as their diagnosis and not as a valuable self-reporter and critical thinker.
That said, there is a fine line between patient profiling that can help or harm. Doctors, nurses, therapists and other workers often form an initial impression based on their experiences or their training. They often need this starting point to determine a course of action. But – and this is the crucial piece – that starting point needs updating as new information comes in. A second impression or a third is often in order. When the initial judgment is incomplete or inaccurate and it is not revised, it can be harmful.
A cornerstone of good care is excellent communication. While this is often characterized as the doctor or medical professional communicating to the patient, it should be a two-way street. Mutual exchange of information is critical but so is mutual listening. In any human interaction, the only way we can truly connect is when we get past our snap judgments and see who is actually there.
When a child is in crisis or when her need for care is urgent, parents are rarely at their best. Most often, there have been many stressful days or weeks before this point which have worn them down. We rely on medical staff to see beyond the diagnosis to the whole child, teen or young adult. We trust them to see our committment and strength in the midst of the frenzy. We hope they will see us as a key member of the team, not as a “less than” parent to be held at arm’s length.
When this doesn’t happen due to patient profiling, we all lose.