We've talked before about psychiatric diagnoses and whether the label can be part of the problem. See Diagnostic Labels that Change Lives, for starters.
Today, Dr. Allen Frances joins us to talk about whether a diagnosis with a poor prognosis can become a self-fulfilling prophecy. I'll leave you to decide.
The Dangers Of Premature Diagnosis
Psychiatric diagnosis is a serious business. Done well, it can significantly help a life, sometimes save it. Done carelessly, it can lead to disaster, even to premature death.
I have been witness to many thousands of patients who benefited greatly from psychiatric diagnosis and treatment. But I have also seen many hundreds who have been harmed by it.
When you lose a son partly as the result of a premature and wrong diagnosis, it ignites in you a painful and prolonged search for answers. Suzanne Beachy shares her deep and heartfelt perspective here.
Ms. Beachy writes:
I, along with a growing number of fed-up mental health consumers and family members, believe that disability and loss of hope can often be made worse by premature diagnosis that highlights weakness, ignores strengths, and predicts a dire prognosis based on meager evidence.
Jumping to a diagnosis of schizophrenia and starting long-term pharmaceutical treatments can turn a potentially temporary problem into a chronic one. In the not-too-distant past, a person reacting strangely to extreme distress was said to have a “nervous breakdown.” People who “broke down” were expected to become well again. Today, the diagnostic names are scarier and the prognosis is expected to be much grimmer- in a way that can become a self-fulfilling prophecy.
At age 21, my son Jake landed in the psych ward of a teaching hospital because he was having a 'psychotic episode.' Although he had no prior history of mental problems, the psychiatrists immediately emphasized that he had a life-long and serious 'mental disorder' with no hope of recovery. Among the staff, there seemed to be absolutely no interest in the possibility that his problem could be brief and temporary.
On only his second day on the psych ward, he was told that he probably had 'schizophrenia.' The next day, his doctors were leaning toward a diagnosis of 'bipolar disorder.' Why not the much less discouraging and more accurate 'brief reactive psychosis?' It was never even suggested as a possibility.
Jake was told that the stresses in his life (the potential loss of his home and his best friend, capped off by 9/11) would not bother a “normal” person. None of the clinicians expressed any willingness to help Jake reclaim his life. They were all laser focused on which chronic DSM diagnosis might best 'fit' him so they could assign him to a long-term drug protocol."
In hospital, a low dose of olanzapine helped him to finally sleep at night (for the first time in weeks), and he was steadily improving. But that was not good enough for the white coats. They insisted on titrating the dosage immediately to the 'therapeutic level' and adding lithium. Jake was told he needed these drugs like a diabetic needs insulin.
Alarmed by the staff’s refusal to engage in any sort of dialogue about the situation, Jake and I fought for his discharge (A.M.A), and he left the hospital with a diagnosis of 'Psychosis, NOS.' His outpatient psychiatrist, aptly named Igor, told us that Jake’s brain was 'just like a broken bone' and the drugs were 'like a cast.'
Unlike a broken bone, though, Jake’s 'broken brain' would need to be immobilized by the 'cast' of medication for AT LEAST a year in order for his brain to heal. And even though the drugs almost completely incapacitated Jake, and he requested a reduced dosage, Igor refused.
A doctor friend of mine says that when a psychiatrist tells a young adult he/she has a life-long mental illness, hope crumbles. Being told that mental illness is like diabetes is misleading and discouraging. This is not a fair comparison.
Diabetes is due to a well understood defect in a body part, the pancreas. Mental illness, on the other hand, literally means that your mind is sick. Your mind, unlike your pancreas, is not just a body part. Your mind enables you to relate, set goals, dream, and have hope. If you and the people around you believe that your mind will be defective and sick for the rest of your life, you are left without hope of ever having the agency to build a life.
The dire prediction of chronic disorder became a self-fulfilling prophecy for my son Jake. Being told he needed to 'set more realistic goals for himself' presumably because of his 'chronic mental illness,' Jake gave up on his goals and decided he might as well be homeless. And that’s the way he died in April of 2008, two weeks after his final birthday. (Happy Birthday, Jake).
What I have learned in the wake of Jake’s tragedy is that psychosis, mental breakdown, going bonkers – whatever you want to call it – need not be a self fulfilling prophecy of permanent illness.
We need not burden distressed young people with hope-sucking labels of chronic mental defect. There is a better way.
Thanks so much, Suzanne, for sharing with us your tragedy and your grief. Surely, your experience will be helpful to others faced with a similar situatIon.
Young people are particularly difficult to diagnose accurately. Their track record is so short; the future course is impossible to predict; developmental factors unpredictably affect the clinical picture; and substance use is so common.
We should preserve uncertainty when it is the most accurate prediction of the future. The most common mistake in psychiatry is to prematurely jump to conclusions and to mislabel someone with a inaccurate diagnosis that has a terrible prognosis.
It is much safer to under-diagnose than to over-diagnose and much better to encourage realistic hope than to shoot from the hip with unrealistically gloomy predictions that can become self-fulfilling prophecies.
Diagnosis most often helps, but sometimes hurts. The loss suffered by Suzanne Beachy reminds us just how high are the stakes. We must get it right and first do no harm.
Dr. Allen Frances was the Chair of the DSM-IV Task Force. He hasn't been so happy with the DSM-V. He is author of Saving Normal: an Insider's Revolt Against Out-of-Control Psychiatric Diagnosis, DSM-5, Big Pharma, and the Medicalization of Ordinary Life.