Have you experienced patient profiling?

emergency roomHave 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.

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7 thoughts on “Have you experienced patient profiling?

  1. About 2 yrs ago I got a call from my son’s school tellIng me
    that as a precaution he needed to be seen by his doctor. At his
    job site he drank water from a water bubbler that had been initially taped off due
    to something in the pipe, however the sign had been taken down by mistake. Unfortunately
    our PCP was out of town so they said we needed to go to the ER. During intake we went thru his
    diagnosis’s and got oh hmmm. I said look we don’t want to be hear either. I noticed no one was there but yet it took a long time to be seen. Finally they put him in the hall right near the nurses station. A security guard appeared although all my son was doing was Playing on his iPhone. At one point I got up to use the restroom when I noticed 5 of six beds were available in the patient area. I thought was isn’t he in there. I sat back down and looked up to see a camera over his gurney. After 2 hours of waiting to see the doctor I got up and said the blood work must be back and if we don’t see a doctor in 15 minutes we are leaving. I reported this to our PCP who was livid at the care we received. I strongly believe we were left in the waiting room to see how he was going to act and then put under the camera due to his mental illness.

  2. My grandson turned 19 in February. He was diognosed with a number of mental and behavioral problems at an early age. He was part of Mental health for many years. He went through numerous clinitians, mentors, doctors because they were always changing and moving on in their careers. Now that he is 19 everything stopped. He no longer has the clinitian etc that he had. He has had a bad year. His younger brother died, his mother was diagnosed with MS and now he loses his support. He feels totally lost. He has an adult mental health clinitian. That is it. It is sooo sad that he is just forgotten because he turned 19. Mentally he is 19 going on 10. If you have any suggestions on what is out there for him please let me know. Thanks, Lydia

    1. Dateline just had a special yesterday (Sunday) on this subject but specifically for Autism.

  3. Doesn’t just happen to the mentally ill, and doesn’t just happen at ERs. I switched PCPs after a particularly offensive incident in February where I went to be checked out for damage to my back after falling on the ice. I was treated suspiciously like a junkie looking for a fix. It culminated with my doctor adopting a very put-upon attitude and telling me that she “didn’t think I was being fair” by asking her for pain medication.

    “Being fair? It’s not my job to be fair with you,” was my response. “I’m your patient and I’m advocating for effective treatment.”

    So I fired her.

  4. Throughout his life, my now 15yr old son has had mental health crises. On occasion, we have sought help at an emergency room. This is always a horrible experience. On one such occasion, my son became very agitated, trashing his room and I found him rolled up in his closet. I was very concerned and asked him if he was safe, would he hurt himself? He could not tell me he would not hurt himself. I contacted his Behavioral Pediatrician and was instructed to bring him to the hospital. After many bad experiences at our local ED, I decided to bring him to Children’s Hospital. I was quite upset and concerned– but, was shocked when I was profiled! My son was placed in a psych room with security outside and, over and over again, I was instructed to leave his room and various staff members asked my son if I was a threat to him! When I questioned why they would think this, I was asked, “why would you ask your son if he was ‘safe’?” I explained that I was concerned and, as a nurse, this is something we ask patients all the time. All of a sudden, I had a room full of “professionals” saying, “oh, so you’re a nurse…” …not sure what that is supposed to mean… any parent should ask that question and not be suspected of child abuse. We were eventually sent home(without any help). Since then, I am terrified to bring him for assistance to any ED.

  5. I live in Western MA and was told that the law for SPED patients is a space of 30-45 minutes (estimate) to be viewed by a Doctor. It upsets me because many times it limits my time options to choose my emergency visits. I let them know it’s a dumb law and its not their fault, however, I like mornings and don’t want to waist my time if unnecessary. My opinion is that someone else may need the allocated time but we (my family) doesn’t.

  6. Once, I had a very severe migraine which took me to a suburban ER. While going through my list of medications, I listed one that could be taken for medical or psychiatric reasons. The ER Nurse asked me why I took it, and I said the psychiatric condition. Up until then she was very kind, empathetic, and concerned. She then said “wait a minute” and came back with 2 security guards outside my room, and her entire demeanor changed. I was still the same, and in acute pain, but she turned cold, and was spending a lot of time asking me about painkillers. I have never listed that medication again, the few times I went to the ER since.

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