Thank you for this very well written essay. All of us in medicine can take some wisdom from your words.
Like one of the other readers who commented, I could not help but notice the similarities between your piece and gender dysphoria in pediatric patients in the US since roughly 2012. I am baffled by the confidence with which children are given the diagnosis when the interventions currently being used to treat it in this cohort are very high stakes, and the lack of long term outcomes data is striking.
Dr. Az Hakeem, a psychiatrist in the UK, has done extensive work with adults with gender dysphoria by facilitating a support group through NHS that ran for over 12 years. Only about 2% of the patients in his group opted to pursue any medical or surgical intervention to treat their dysphoria. Time and support in a nonjudgmental environment (watchful waiting) were effective for them and/ or allowed them to get to underlying issues/ diagnoses that were causing their distress.
His observation of the current large cohort of children presenting with distress about their gender is that they are actually taking part in a new subculture as a way to manage their feelings & find belonging. He notes that most kids have some underlying issue they are trying to deal with. Most often: Neurodivergence/Autism, trauma, or internalized homophobia.
I wish we would try to replicate that treatment approach in the US.
An amazing article with truths that apply to the entire practice of medicine. Unfortunately, time is the least thing any of us has and it’s going to get worse. Families, facing a crisis with a child, are also not exactly known, understandably, for patience. They want answers and an effective treatment yesterday. What a quandary. I sincerely hope that unit at NIMH is still funded and up and running.
Dear Dr. Ditto, thank you. You've named the real quandary: families in crisis need help now, and the honest answer sometimes takes months. I've come to believe that we can offer treatment and support right away without asking the diagnosis to carry more certainty than it has yet. As for the unit, sadly the study ended some years ago and was never recreated. I wrote about why here: https://beneaththediagnosis.substack.com/p/why-this-study-was-never-recreated
Thank you for sharing this really important perspective. My clinical experience with mental health in peds is that there is great pressure from the child's circumstances to come up with a diagnosis. Sometimes it's social and other times legal. The pressure is on the medical team and the consequences are often financial or legal.
Thank you, Dr. Ashori. You're right, and it is one of the least discussed forces in child mental health. A diagnosis often opens a door: school supports, services, insurance coverage, sometimes a court's attention. So the pressure to name something early is real, and usually well meant. I have come to believe we can separate the need for help from the need for a name. A child can get support while we are still working out what is going on.
I just re-subbed after being a Substack lurker the past several years based on this article. Thank you so much for reinforcing being careful and fluid in the diagnosis and treatment of mental illness. When I did my work in addiction I was as careful as I could be about diagnosing personality disorders that caused stigma in medical charts - and never diagnosed unless a person had been chemical free for at least 6 months. Sobriety either calms many mimicked diagnoses or “lets them out” with time. The fluidity in diagnostics and treatment is rare, and I appreciate how you handle the truth about being willing to be wrong. Bravo for a brilliant essay and thankfully you are still in the game!
Thank you, and welcome back. Your rule is a perfect example from a different field. Sobriety gives you what our ward gave us: a clean baseline, and time to see what remains. "Calms them or lets them out" is exactly it. I may borrow that phrase.
Please do; I’d be honored! Subbed to you, too. I’ve learned personally that a label does not do much but allow insurance companies to pay…😉. My own label in 1965 would have made euthanasia acceptable. Thankfully my father’s Irish catholic temper label didn’t allow it, and at 61 I’ve had the most amazing life!!
Thank you, Jim, for trusting us with that information. It is a powerful reminder of what a label can do, and of what a life can become when someone refuses to let it be the last word. I'm glad you're here, and glad you're reading.
This speaks to diagnostic humility, capacity for saying “I don’t know”, and avoidance of cognitive biases like anchoring and premature closure. These are concepts and lessons that are applicable to any clinician in any specialty.
But it also speaks to a practical limitation, and (dare I say) a luxury most clinicians don’t have: time. Who has the time to devote to hours and hours of observation?
And it also points to the dangers of EMR slop. I’m as guilty as the next person of copy/paste of PMH without giving a second thought. Now, some things are what they are…you don’t really need to re-litigate whether someone has diabetes all that hard. But “CHF” is one such ubiquitous but troublesome label in my field. It is so easy to perpetuate falsehoods in a chart these days.
Thank you, Dr Cheung. You've named the two forces I worry about most. Time is a luxury, and I don't pretend most clinicians have it. But the copy-forward problem may be the one we can do something about. Once a label is in the problem list, it tends to be carried forward rather than checked. Your CHF example shows it isn't only psychiatry. Even a small habit might help, especially in psychiatry: note in the chart when a diagnosis was made and on what evidence, so the next clinician sees the reasoning behind the label, not just the label.
Thank you for a thoughtful post. I am struck by your real confidence in arriving finally on a correct final diagnosis. My concern is that uncertainty may be intrinsic to the very definition of the diagnosis itself, as human behavior changes over time. Anyway, I applaud you for understanding and exploring the vagaries of the very tough specialty you chose.
Thank you. I agree with you more than the essay may have let on. Even the diagnoses we reached after weeks of observation were ones we kept testing. We brought every child back every two years, precisely because behavior changes and we could have been wrong. What gave us some confidence was not the day of the diagnosis but what we saw over the years that followed. In the care of an individual child, I think the most honest approach is to hold a diagnosis firmly enough to act on, and keep checking that it still fits.
Thank you!! When I was in medical school (this incident would have occurred in about 1988) I witnessed an evaluation a child psychiatrist did on a girl of about 5 or 6 years old. This "doctor" just couldn't understand "what was wrong with this child" because she was unable to repeat what he was doing. He wanted her to use a xylophone mallet to repeat the pattern of the 5 or 6 strikes he did with the mallet. But he was using the mallet with a beautiful movement of his wrist making a very melodic sound. She, being young, was unable to mimic the beautiful movement and sound. Her strikes were very clunky. It was obvious to me as a mere medical student that she clearly understood the pattern, she was focused on mimicking the sound. I don't remember what diagnosis he ended up giving her - but he clearly thought her comprehension skills were low. I thought she was more intelligent than he was. It was heartbreaking to watch. To this day I wish I would have had the courage to speak up for her. I sometimes wonder what her life was like after she received some "diagnosis" this doctor gave her.
Thank you, Dr. Clemens, for sharing this. You saw what the evaluation missed: she understood the task, just not the one he thought he was testing. Moments like that highlight how quickly one reading gets written down and becomes the thing every later clinician sees first. I don't think you should carry that as a failure of courage; always hard for a medical student to speak up. But you noticed it, and you've remembered it for nearly forty years, which says a lot about the kind of physician you became.
Oh the labels…we are so quick to label everything and create identities around it.
Second, I see so many adult patients in my practice with polypharmacy, and I often wonder who they really are behind the cover of effects and side effects.
Thank you. You've put your finger on it: a label can become an identity before anyone has checked whether it fits. Your question about polypharmacy is one I think about often. When medications have been layered on over the years, which may be necessary as well, it gets very hard to see the person underneath. Taking a careful second look and ongoing evaluation is worth it - but always slowly, carefully, and only together with the patient's own clinician.
As a dentist, I often see my patients more frequently than many of their medical clinicians. And I see the changes over time quite profoundly both in the oral cavity and in their persona and general wellbeing. The many medications are from multiple practitioners who do not seem to communicate. I am usually powerless to help the patient in the system as it is. As I said, I so often wonder who the real “person” is and sometimes it feels heartbreaking.
That's an important vantage point, and one we rarely think about. You may be the only clinician who sees the same patient regularly over years, which means you notice change before anyone else does. When no one owns the whole medication list, a note from you to the primary care doctor or the prescriber saying "I've noticed this change" can matter more than it seems. I wrote about this problem, where no one is holding the whole picture, for The Frontier Psychiatrists: https://thefrontierpsychiatrists.substack.com/p/understanding-kids-with-schizophrenia
Touching essay to say the least. Thank you for your wise words. I struggle with these very similar battles against insurance and school policy to assign a psychiatric diagnosis to a child.
What worries me though is the other 70% of the children in your project who remained diagnosed/labeled "schizophrenia" for the rest of their life.
Would you give them the same re-assessment opportunities in the future? Especially once they finish the study
Thank you for asking. It's an important question. We didn't stop assessing the children who kept the diagnosis. We brought them all back every two years and re-evaluated them each time to reconfirm. I agree with you that every child should get that kind of second look (or third, fourth, and so on, as in our case), whatever the label, and especially once a study or a treatment episode ends. That's the hardest part to build into ordinary care.
Hear! Hear! I really appreciate the diagnostic caution expressed so well here by Dr Gogtay. I wonder if the proportion of childhood schizophrenia misdiagnosis is 'only 30%'. A referral bias may make the real rate of misdiagnosis higher. And I bet it's far greater for patients with labels such as ADHD and ASD, among others. The point of a (mis)diagnosis 'hardening into a fact' obtains across much of medicine these days, especially under the malign influence of pharma and time pressures placed on clinicians by corporate medicine.
Thank you and your point is important. You're right that referral bias matters, though it can cut both ways. The children who reached us had already seen several clinicians and were a highly selected group, so I want to be careful about applying the 30% figure to other settings. I don't know what the rate is for other diagnoses, and I wouldn't want to guess. What I'm more confident about is the mechanism: once a label is in the chart, it tends to get copied forward rather than tested again. Time pressure makes that the norm. The fix I keep coming back to is simple, if not easy: treat a diagnosis as a working hypothesis and build in a moment to ask whether it still fits.
Taking meds off is to some akin to just disregard for the pts health or bravado. When you see the med list and the meds prescribed are ordered at “ homeopathic “ doses like losartan 25mg a day, and the BP is below 130 systolic, properly measured with a aneroid or mercury sphygmomanometer, following the standards, is it really hypertension treatment ? This patient had just taken over full responsibility of caring at her house, for her mother with dementia. Two weeks later, she herself is diagnosed with breast cancer ! Good reason for elevated BP at the time of her visits. Two yrs later, on obtaining the history and making this correlation, the treatment for HTN was stopped and the response was monitored. She remained normotensive, but the diagnostic code sticks like …
Always obtain a thorough history and try to see a rationale for treatment and the treatment choices made. If the chart went through you and you didn’t act, you are not part of the solution. Slow down, think, that’s your Mom on the chair, Primum non nocere.
Thank you, Dr. Lopez-Santini. Your example makes the point better than I could: the reason for the reading was in the history, and once the code was in the chart it outlived the reason.
I do want to be careful about one thing for readers here. In our study some children did come off medication, but only on an inpatient unit, with nurses and physicians present around the clock, to reach diagnostic certainty. It was never routine practice, and I would not recommend it outside that setting. Most of those children resumed medication once the diagnosis was clear. No one should stop a psychiatric medication except with their own clinician.
Thank you so much! Fantastic piece! After 40 years as a family physician, I completely agree with watchful waiting and made my encounter times longer, bringing people back again to further evaluate and brainstorm with the patient.
Agree with the sentiments expressed.
That said, should I expect more AI-generated articles (and comments) on Sensible Medicine going forward?
Thank you for this very well written essay. All of us in medicine can take some wisdom from your words.
Like one of the other readers who commented, I could not help but notice the similarities between your piece and gender dysphoria in pediatric patients in the US since roughly 2012. I am baffled by the confidence with which children are given the diagnosis when the interventions currently being used to treat it in this cohort are very high stakes, and the lack of long term outcomes data is striking.
Dr. Az Hakeem, a psychiatrist in the UK, has done extensive work with adults with gender dysphoria by facilitating a support group through NHS that ran for over 12 years. Only about 2% of the patients in his group opted to pursue any medical or surgical intervention to treat their dysphoria. Time and support in a nonjudgmental environment (watchful waiting) were effective for them and/ or allowed them to get to underlying issues/ diagnoses that were causing their distress.
His observation of the current large cohort of children presenting with distress about their gender is that they are actually taking part in a new subculture as a way to manage their feelings & find belonging. He notes that most kids have some underlying issue they are trying to deal with. Most often: Neurodivergence/Autism, trauma, or internalized homophobia.
I wish we would try to replicate that treatment approach in the US.
An amazing article with truths that apply to the entire practice of medicine. Unfortunately, time is the least thing any of us has and it’s going to get worse. Families, facing a crisis with a child, are also not exactly known, understandably, for patience. They want answers and an effective treatment yesterday. What a quandary. I sincerely hope that unit at NIMH is still funded and up and running.
Dear Dr. Ditto, thank you. You've named the real quandary: families in crisis need help now, and the honest answer sometimes takes months. I've come to believe that we can offer treatment and support right away without asking the diagnosis to carry more certainty than it has yet. As for the unit, sadly the study ended some years ago and was never recreated. I wrote about why here: https://beneaththediagnosis.substack.com/p/why-this-study-was-never-recreated
Thank you for sharing this really important perspective. My clinical experience with mental health in peds is that there is great pressure from the child's circumstances to come up with a diagnosis. Sometimes it's social and other times legal. The pressure is on the medical team and the consequences are often financial or legal.
Thank you, Dr. Ashori. You're right, and it is one of the least discussed forces in child mental health. A diagnosis often opens a door: school supports, services, insurance coverage, sometimes a court's attention. So the pressure to name something early is real, and usually well meant. I have come to believe we can separate the need for help from the need for a name. A child can get support while we are still working out what is going on.
I just re-subbed after being a Substack lurker the past several years based on this article. Thank you so much for reinforcing being careful and fluid in the diagnosis and treatment of mental illness. When I did my work in addiction I was as careful as I could be about diagnosing personality disorders that caused stigma in medical charts - and never diagnosed unless a person had been chemical free for at least 6 months. Sobriety either calms many mimicked diagnoses or “lets them out” with time. The fluidity in diagnostics and treatment is rare, and I appreciate how you handle the truth about being willing to be wrong. Bravo for a brilliant essay and thankfully you are still in the game!
Yes, welcome back. I have missed your comments.
Adam
Great to be reconnected, Adam!!
Thank you, and welcome back. Your rule is a perfect example from a different field. Sobriety gives you what our ward gave us: a clean baseline, and time to see what remains. "Calms them or lets them out" is exactly it. I may borrow that phrase.
Please do; I’d be honored! Subbed to you, too. I’ve learned personally that a label does not do much but allow insurance companies to pay…😉. My own label in 1965 would have made euthanasia acceptable. Thankfully my father’s Irish catholic temper label didn’t allow it, and at 61 I’ve had the most amazing life!!
Thank you, Jim, for trusting us with that information. It is a powerful reminder of what a label can do, and of what a life can become when someone refuses to let it be the last word. I'm glad you're here, and glad you're reading.
Fantastic post on a fascinating topic.
This speaks to diagnostic humility, capacity for saying “I don’t know”, and avoidance of cognitive biases like anchoring and premature closure. These are concepts and lessons that are applicable to any clinician in any specialty.
But it also speaks to a practical limitation, and (dare I say) a luxury most clinicians don’t have: time. Who has the time to devote to hours and hours of observation?
And it also points to the dangers of EMR slop. I’m as guilty as the next person of copy/paste of PMH without giving a second thought. Now, some things are what they are…you don’t really need to re-litigate whether someone has diabetes all that hard. But “CHF” is one such ubiquitous but troublesome label in my field. It is so easy to perpetuate falsehoods in a chart these days.
Thank you, Dr Cheung. You've named the two forces I worry about most. Time is a luxury, and I don't pretend most clinicians have it. But the copy-forward problem may be the one we can do something about. Once a label is in the problem list, it tends to be carried forward rather than checked. Your CHF example shows it isn't only psychiatry. Even a small habit might help, especially in psychiatry: note in the chart when a diagnosis was made and on what evidence, so the next clinician sees the reasoning behind the label, not just the label.
Thank you for a thoughtful post. I am struck by your real confidence in arriving finally on a correct final diagnosis. My concern is that uncertainty may be intrinsic to the very definition of the diagnosis itself, as human behavior changes over time. Anyway, I applaud you for understanding and exploring the vagaries of the very tough specialty you chose.
Thank you. I agree with you more than the essay may have let on. Even the diagnoses we reached after weeks of observation were ones we kept testing. We brought every child back every two years, precisely because behavior changes and we could have been wrong. What gave us some confidence was not the day of the diagnosis but what we saw over the years that followed. In the care of an individual child, I think the most honest approach is to hold a diagnosis firmly enough to act on, and keep checking that it still fits.
Thank you. Applicable to gender dysphoria in spades. And the rush to label children as transgender.
The AAP has explicitly discouraged watchful waiting (Rafferty et al, 2018).
It would be great if you would look at what is happening in this subfield.
Wonderful article with principles applicable to every specialty in medicine.
Thank you so much and fully agree about broader application.
Thank you!! When I was in medical school (this incident would have occurred in about 1988) I witnessed an evaluation a child psychiatrist did on a girl of about 5 or 6 years old. This "doctor" just couldn't understand "what was wrong with this child" because she was unable to repeat what he was doing. He wanted her to use a xylophone mallet to repeat the pattern of the 5 or 6 strikes he did with the mallet. But he was using the mallet with a beautiful movement of his wrist making a very melodic sound. She, being young, was unable to mimic the beautiful movement and sound. Her strikes were very clunky. It was obvious to me as a mere medical student that she clearly understood the pattern, she was focused on mimicking the sound. I don't remember what diagnosis he ended up giving her - but he clearly thought her comprehension skills were low. I thought she was more intelligent than he was. It was heartbreaking to watch. To this day I wish I would have had the courage to speak up for her. I sometimes wonder what her life was like after she received some "diagnosis" this doctor gave her.
Thank you, Dr. Clemens, for sharing this. You saw what the evaluation missed: she understood the task, just not the one he thought he was testing. Moments like that highlight how quickly one reading gets written down and becomes the thing every later clinician sees first. I don't think you should carry that as a failure of courage; always hard for a medical student to speak up. But you noticed it, and you've remembered it for nearly forty years, which says a lot about the kind of physician you became.
Oh the labels…we are so quick to label everything and create identities around it.
Second, I see so many adult patients in my practice with polypharmacy, and I often wonder who they really are behind the cover of effects and side effects.
Thank you. You've put your finger on it: a label can become an identity before anyone has checked whether it fits. Your question about polypharmacy is one I think about often. When medications have been layered on over the years, which may be necessary as well, it gets very hard to see the person underneath. Taking a careful second look and ongoing evaluation is worth it - but always slowly, carefully, and only together with the patient's own clinician.
As a dentist, I often see my patients more frequently than many of their medical clinicians. And I see the changes over time quite profoundly both in the oral cavity and in their persona and general wellbeing. The many medications are from multiple practitioners who do not seem to communicate. I am usually powerless to help the patient in the system as it is. As I said, I so often wonder who the real “person” is and sometimes it feels heartbreaking.
That's an important vantage point, and one we rarely think about. You may be the only clinician who sees the same patient regularly over years, which means you notice change before anyone else does. When no one owns the whole medication list, a note from you to the primary care doctor or the prescriber saying "I've noticed this change" can matter more than it seems. I wrote about this problem, where no one is holding the whole picture, for The Frontier Psychiatrists: https://thefrontierpsychiatrists.substack.com/p/understanding-kids-with-schizophrenia
Touching essay to say the least. Thank you for your wise words. I struggle with these very similar battles against insurance and school policy to assign a psychiatric diagnosis to a child.
What worries me though is the other 70% of the children in your project who remained diagnosed/labeled "schizophrenia" for the rest of their life.
Would you give them the same re-assessment opportunities in the future? Especially once they finish the study
Thank you
Thank you for asking. It's an important question. We didn't stop assessing the children who kept the diagnosis. We brought them all back every two years and re-evaluated them each time to reconfirm. I agree with you that every child should get that kind of second look (or third, fourth, and so on, as in our case), whatever the label, and especially once a study or a treatment episode ends. That's the hardest part to build into ordinary care.
Hear! Hear! I really appreciate the diagnostic caution expressed so well here by Dr Gogtay. I wonder if the proportion of childhood schizophrenia misdiagnosis is 'only 30%'. A referral bias may make the real rate of misdiagnosis higher. And I bet it's far greater for patients with labels such as ADHD and ASD, among others. The point of a (mis)diagnosis 'hardening into a fact' obtains across much of medicine these days, especially under the malign influence of pharma and time pressures placed on clinicians by corporate medicine.
Thank you and your point is important. You're right that referral bias matters, though it can cut both ways. The children who reached us had already seen several clinicians and were a highly selected group, so I want to be careful about applying the 30% figure to other settings. I don't know what the rate is for other diagnoses, and I wouldn't want to guess. What I'm more confident about is the mechanism: once a label is in the chart, it tends to get copied forward rather than tested again. Time pressure makes that the norm. The fix I keep coming back to is simple, if not easy: treat a diagnosis as a working hypothesis and build in a moment to ask whether it still fits.
This is a remarkable article. I will share it with others. Well thought and well said.
Thank you, Kate. I'm grateful you'll pass it on.
Taking meds off is to some akin to just disregard for the pts health or bravado. When you see the med list and the meds prescribed are ordered at “ homeopathic “ doses like losartan 25mg a day, and the BP is below 130 systolic, properly measured with a aneroid or mercury sphygmomanometer, following the standards, is it really hypertension treatment ? This patient had just taken over full responsibility of caring at her house, for her mother with dementia. Two weeks later, she herself is diagnosed with breast cancer ! Good reason for elevated BP at the time of her visits. Two yrs later, on obtaining the history and making this correlation, the treatment for HTN was stopped and the response was monitored. She remained normotensive, but the diagnostic code sticks like …
Always obtain a thorough history and try to see a rationale for treatment and the treatment choices made. If the chart went through you and you didn’t act, you are not part of the solution. Slow down, think, that’s your Mom on the chair, Primum non nocere.
Thank you, Dr. Lopez-Santini. Your example makes the point better than I could: the reason for the reading was in the history, and once the code was in the chart it outlived the reason.
I do want to be careful about one thing for readers here. In our study some children did come off medication, but only on an inpatient unit, with nurses and physicians present around the clock, to reach diagnostic certainty. It was never routine practice, and I would not recommend it outside that setting. Most of those children resumed medication once the diagnosis was clear. No one should stop a psychiatric medication except with their own clinician.
Thank you so much! Fantastic piece! After 40 years as a family physician, I completely agree with watchful waiting and made my encounter times longer, bringing people back again to further evaluate and brainstorm with the patient.
Thank you, Dr. Gross. Bringing people back to look again is exactly what I mean. Time is part of the examination.