Questioning psychiatry’s assumptions about lifelong medications

A few weeks ago, I was talking to a psychiatrist about one of his former patients whom I was interviewing for a book. The patient was hospitalized years ago for a single episode of mania. She spent a few weeks on an inpatient unit where she raised all hell and was in and out of seclusion, only to be heavily medicated, and still have it in her to raise Cain. She then spent a few weeks in a day hospital. She ended her single psychiatric episode by being discharged on three antipsychotic medications, one benzodiazepine, and Cogentin, all in sizeable doses.

The inpatient psychiatrist did not remember this patient; why would he? Aside from her unusual age (54) at the time of her presentation, the chart documented just another manic patient who was certified, committed for being gravely disabled, and authorized for medication administration against her will, and she recovered. The patient left the hospital settings and began to slowly taper her medications because the side effects were intolerable (perhaps because she was on enough medicine to drop a Clydesdale). She found a psychiatrist she could work with, one with a reputation for using medication only as a last resort, and she has been off medication, without a relapse, for 7 years now. I mentioned this to the psychiatrist who had seen her in the hospital and his response – without remembering the patient and without reviewing her chart – was swift: "She’ll get sick again." And she may; bipolar disorder is a recurrent illness, but since she presented following unusual circumstances, at an atypical age, and has done quite well in the intervening years, I am hoping his dismal prognosis will prove to be wrong. Perhaps a single episode of mania was just a single episode of mania – a few bad weeks in someone’s life precipitated by extreme stress. The patient believes her course was worsened by the medication she was given and the unkind treatment she received.

We were taught that if patients are diagnosed with certain psychiatric disorders, the recommendation is for them to remain on medication for life.

In clinical practice, we’ve also learned that as much as we may recommend that patients take their medicine, most patients try the experiment of going off, with or without our agreement, concession, or even our encouragement. And we certainly know that some of those people try this experiment over and over, only to land in the same bad place (often the psychiatric unit or jail) again and again. What we see less is that some of those people do just fine without the medications one might have predicted they’d need for the rest of their life. In private practice, a few will stop their medications – or refuse to take them in the first place – and do quite well. They may continue to come for supportive or insight-oriented psychotherapy. But the truth is that most patients who stop their medications and do fine just drift off, lost to the attrition of being well. They may never return or may come later when they have a recurrence, but we are left to wonder if the risks of prophylactic medication are worth the benefit given the following: These recurrences can be years or even decades apart, not all recurrences are catastrophic or difficult to treat, and the medications are often not benign. For patients who have repeatedly become psychotic, suicidal, and unable to function within weeks of stopping their medication, there is little choice; they need chronic treatment.

For the patient who gets delusional every 10 years, it may not be worth the tradeoff of chronic antipsychotics if that patient is one of the many who develop a metabolic syndrome. These are things we’ve known in clinical practice for a long time; not every teenager labeled "bipolar" needs lifelong lithium.

But what’s new, and what should shake us up, is the blog National Institute of Mental Health Director Thomas Insel posted on Aug. 28. Dr. Insel discussed the research that has shown that a subset of psychotic patients do significantly better if they lower or even completely stop their antipsychotic medication following the acute phase of treatment of schizophrenia. If you haven’t read Dr. Insel’s post, "Antipsychotics: Taking the Long View," it’s well worth the read.

He wrote: "Wunderink and colleagues from the Netherlands report on a 7-year follow-up of 103 people with schizophrenia and related disorders who had experienced a first episode of psychosis between 2001 and 2002. After 6 months of symptomatic remission following antipsychotic treatment, patients were randomly assigned to either maintenance antipsychotic treatment or a tapering off and discontinuation of the drug. As expected, the group that stopped taking their medications experienced twice the relapse rates in the early phase of the follow-up. But these rates evened out after a few years, as some patients in the maintenance group also stopped taking their medication. Most important, by 7 years, the discontinuation group had achieved twice the functional recovery rate: 40.4% vs. only 17.6% among the medication maintenance group. To be clear, this study started with patients in remission, and only 17 of the 103 patients – 21% of the discontinuation group and 11% of the maintenance group – were off medication entirely during the last 2 years of follow-up. An equal number were taking very low doses of medication – meaning that roughly one-third of all study patients were eventually taking little or no medication."

Our antipsychiatry foes will read this as saying that people do better without antipsychotics, and that’s not what this says at all. But what it does say is that a subset of people, whom we can’t identify beforehand, will do better over the long term with lower doses, or no, medication. Although we can’t identify who will do better beforehand, this does totally change the risk-benefit discussion we have with our patients, especially the more compliant of those patients, and it completely disrupts the idea that prophylaxis for all patients with schizophrenia is the right and only thing to do.

Psychiatry seems to have its own leagues of critics. Certainly, assumptions are made in all areas of medicine, but there isn’t an outspoken group of antioncology patients who take to the streets with signs and megaphones. And being a cancer survivor is a good thing, while being a "psychiatry survivor" is not.

But psychiatry is not alone in being faced with challenges to assumptions we’ve taken as gospel. The food pyramid is one example of a frequently changing ideal about what we should be consuming. Is coronary artery stenting good, bad, or just oversold? The Institute of Medicine released a 169-page report this year discussing how the evidence that a sodium-restricted diet, which does lower blood pressure, is short on proof that it also lowers the risk of stroke and cardiac events. Knee jerk hormone replacement therapy for postmenopausal women proved to be a big mistake. But we have been prescribing long-term antipsychotics without question for more than 50 years, and I applaud Dr. Insel for asking us to at least reconsider the status quo, whether it’s how we establish our diagnostic criteria or the assumptions we make about what treatments best help all patients.

Dr. Miller is a coauthor of "Shrink Rap: Three Psychiatrists Explain Their Work" (Baltimore: The Johns Hopkins University Press, 2011).

A few weeks ago, I was talking to a psychiatrist about one of his former patients whom I was interviewing for a book. The patient was hospitalized years ago for a single episode of mania. She spent a few weeks on an inpatient unit where she raised all hell and was in and out of seclusion, only to be heavily medicated, and still have it in her to raise Cain. She then spent a few weeks in a day hospital. She ended her single psychiatric episode by being discharged on three antipsychotic medications, one benzodiazepine, and Cogentin, all in sizeable doses.

The inpatient psychiatrist did not remember this patient; why would he? Aside from her unusual age (54) at the time of her presentation, the chart documented just another manic patient who was certified, committed for being gravely disabled, and authorized for medication administration against her will, and she recovered. The patient left the hospital settings and began to slowly taper her medications because the side effects were intolerable (perhaps because she was on enough medicine to drop a Clydesdale). She found a psychiatrist she could work with, one with a reputation for using medication only as a last resort, and she has been off medication, without a relapse, for 7 years now. I mentioned this to the psychiatrist who had seen her in the hospital and his response – without remembering the patient and without reviewing her chart – was swift: "She’ll get sick again." And she may; bipolar disorder is a recurrent illness, but since she presented following unusual circumstances, at an atypical age, and has done quite well in the intervening years, I am hoping his dismal prognosis will prove to be wrong. Perhaps a single episode of mania was just a single episode of mania – a few bad weeks in someone’s life precipitated by extreme stress. The patient believes her course was worsened by the medication she was given and the unkind treatment she received.

We were taught that if patients are diagnosed with certain psychiatric disorders, the recommendation is for them to remain on medication for life.

In clinical practice, we’ve also learned that as much as we may recommend that patients take their medicine, most patients try the experiment of going off, with or without our agreement, concession, or even our encouragement. And we certainly know that some of those people try this experiment over and over, only to land in the same bad place (often the psychiatric unit or jail) again and again. What we see less is that some of those people do just fine without the medications one might have predicted they’d need for the rest of their life. In private practice, a few will stop their medications – or refuse to take them in the first place – and do quite well. They may continue to come for supportive or insight-oriented psychotherapy. But the truth is that most patients who stop their medications and do fine just drift off, lost to the attrition of being well. They may never return or may come later when they have a recurrence, but we are left to wonder if the risks of prophylactic medication are worth the benefit given the following: These recurrences can be years or even decades apart, not all recurrences are catastrophic or difficult to treat, and the medications are often not benign. For patients who have repeatedly become psychotic, suicidal, and unable to function within weeks of stopping their medication, there is little choice; they need chronic treatment.

For the patient who gets delusional every 10 years, it may not be worth the tradeoff of chronic antipsychotics if that patient is one of the many who develop a metabolic syndrome. These are things we’ve known in clinical practice for a long time; not every teenager labeled "bipolar" needs lifelong lithium.

But what’s new, and what should shake us up, is the blog National Institute of Mental Health Director Thomas Insel posted on Aug. 28. Dr. Insel discussed the research that has shown that a subset of psychotic patients do significantly better if they lower or even completely stop their antipsychotic medication following the acute phase of treatment of schizophrenia. If you haven’t read Dr. Insel’s post, "Antipsychotics: Taking the Long View," it’s well worth the read.

He wrote: "Wunderink and colleagues from the Netherlands report on a 7-year follow-up of 103 people with schizophrenia and related disorders who had experienced a first episode of psychosis between 2001 and 2002. After 6 months of symptomatic remission following antipsychotic treatment, patients were randomly assigned to either maintenance antipsychotic treatment or a tapering off and discontinuation of the drug. As expected, the group that stopped taking their medications experienced twice the relapse rates in the early phase of the follow-up. But these rates evened out after a few years, as some patients in the maintenance group also stopped taking their medication. Most important, by 7 years, the discontinuation group had achieved twice the functional recovery rate: 40.4% vs. only 17.6% among the medication maintenance group. To be clear, this study started with patients in remission, and only 17 of the 103 patients – 21% of the discontinuation group and 11% of the maintenance group – were off medication entirely during the last 2 years of follow-up. An equal number were taking very low doses of medication – meaning that roughly one-third of all study patients were eventually taking little or no medication."

Our antipsychiatry foes will read this as saying that people do better without antipsychotics, and that’s not what this says at all. But what it does say is that a subset of people, whom we can’t identify beforehand, will do better over the long term with lower doses, or no, medication. Although we can’t identify who will do better beforehand, this does totally change the risk-benefit discussion we have with our patients, especially the more compliant of those patients, and it completely disrupts the idea that prophylaxis for all patients with schizophrenia is the right and only thing to do.

Psychiatry seems to have its own leagues of critics. Certainly, assumptions are made in all areas of medicine, but there isn’t an outspoken group of antioncology patients who take to the streets with signs and megaphones. And being a cancer survivor is a good thing, while being a "psychiatry survivor" is not.

But psychiatry is not alone in being faced with challenges to assumptions we’ve taken as gospel. The food pyramid is one example of a frequently changing ideal about what we should be consuming. Is coronary artery stenting good, bad, or just oversold? The Institute of Medicine released a 169-page report this year discussing how the evidence that a sodium-restricted diet, which does lower blood pressure, is short on proof that it also lowers the risk of stroke and cardiac events. Knee jerk hormone replacement therapy for postmenopausal women proved to be a big mistake. But we have been prescribing long-term antipsychotics without question for more than 50 years, and I applaud Dr. Insel for asking us to at least reconsider the status quo, whether it’s how we establish our diagnostic criteria or the assumptions we make about what treatments best help all patients.

Dr. Miller is a coauthor of "Shrink Rap: Three Psychiatrists Explain Their Work" (Baltimore: The Johns Hopkins University Press, 2011).

A few weeks ago, I was talking to a psychiatrist about one of his former patients whom I was interviewing for a book. The patient was hospitalized years ago for a single episode of mania. She spent a few weeks on an inpatient unit where she raised all hell and was in and out of seclusion, only to be heavily medicated, and still have it in her to raise Cain. She then spent a few weeks in a day hospital. She ended her single psychiatric episode by being discharged on three antipsychotic medications, one benzodiazepine, and Cogentin, all in sizeable doses.

The inpatient psychiatrist did not remember this patient; why would he? Aside from her unusual age (54) at the time of her presentation, the chart documented just another manic patient who was certified, committed for being gravely disabled, and authorized for medication administration against her will, and she recovered. The patient left the hospital settings and began to slowly taper her medications because the side effects were intolerable (perhaps because she was on enough medicine to drop a Clydesdale). She found a psychiatrist she could work with, one with a reputation for using medication only as a last resort, and she has been off medication, without a relapse, for 7 years now. I mentioned this to the psychiatrist who had seen her in the hospital and his response – without remembering the patient and without reviewing her chart – was swift: "She’ll get sick again." And she may; bipolar disorder is a recurrent illness, but since she presented following unusual circumstances, at an atypical age, and has done quite well in the intervening years, I am hoping his dismal prognosis will prove to be wrong. Perhaps a single episode of mania was just a single episode of mania – a few bad weeks in someone’s life precipitated by extreme stress. The patient believes her course was worsened by the medication she was given and the unkind treatment she received.

We were taught that if patients are diagnosed with certain psychiatric disorders, the recommendation is for them to remain on medication for life.

In clinical practice, we’ve also learned that as much as we may recommend that patients take their medicine, most patients try the experiment of going off, with or without our agreement, concession, or even our encouragement. And we certainly know that some of those people try this experiment over and over, only to land in the same bad place (often the psychiatric unit or jail) again and again. What we see less is that some of those people do just fine without the medications one might have predicted they’d need for the rest of their life. In private practice, a few will stop their medications – or refuse to take them in the first place – and do quite well. They may continue to come for supportive or insight-oriented psychotherapy. But the truth is that most patients who stop their medications and do fine just drift off, lost to the attrition of being well. They may never return or may come later when they have a recurrence, but we are left to wonder if the risks of prophylactic medication are worth the benefit given the following: These recurrences can be years or even decades apart, not all recurrences are catastrophic or difficult to treat, and the medications are often not benign. For patients who have repeatedly become psychotic, suicidal, and unable to function within weeks of stopping their medication, there is little choice; they need chronic treatment.

For the patient who gets delusional every 10 years, it may not be worth the tradeoff of chronic antipsychotics if that patient is one of the many who develop a metabolic syndrome. These are things we’ve known in clinical practice for a long time; not every teenager labeled "bipolar" needs lifelong lithium.

But what’s new, and what should shake us up, is the blog National Institute of Mental Health Director Thomas Insel posted on Aug. 28. Dr. Insel discussed the research that has shown that a subset of psychotic patients do significantly better if they lower or even completely stop their antipsychotic medication following the acute phase of treatment of schizophrenia. If you haven’t read Dr. Insel’s post, "Antipsychotics: Taking the Long View," it’s well worth the read.

He wrote: "Wunderink and colleagues from the Netherlands report on a 7-year follow-up of 103 people with schizophrenia and related disorders who had experienced a first episode of psychosis between 2001 and 2002. After 6 months of symptomatic remission following antipsychotic treatment, patients were randomly assigned to either maintenance antipsychotic treatment or a tapering off and discontinuation of the drug. As expected, the group that stopped taking their medications experienced twice the relapse rates in the early phase of the follow-up. But these rates evened out after a few years, as some patients in the maintenance group also stopped taking their medication. Most important, by 7 years, the discontinuation group had achieved twice the functional recovery rate: 40.4% vs. only 17.6% among the medication maintenance group. To be clear, this study started with patients in remission, and only 17 of the 103 patients – 21% of the discontinuation group and 11% of the maintenance group – were off medication entirely during the last 2 years of follow-up. An equal number were taking very low doses of medication – meaning that roughly one-third of all study patients were eventually taking little or no medication."

Our antipsychiatry foes will read this as saying that people do better without antipsychotics, and that’s not what this says at all. But what it does say is that a subset of people, whom we can’t identify beforehand, will do better over the long term with lower doses, or no, medication. Although we can’t identify who will do better beforehand, this does totally change the risk-benefit discussion we have with our patients, especially the more compliant of those patients, and it completely disrupts the idea that prophylaxis for all patients with schizophrenia is the right and only thing to do.

Psychiatry seems to have its own leagues of critics. Certainly, assumptions are made in all areas of medicine, but there isn’t an outspoken group of antioncology patients who take to the streets with signs and megaphones. And being a cancer survivor is a good thing, while being a "psychiatry survivor" is not.

But psychiatry is not alone in being faced with challenges to assumptions we’ve taken as gospel. The food pyramid is one example of a frequently changing ideal about what we should be consuming. Is coronary artery stenting good, bad, or just oversold? The Institute of Medicine released a 169-page report this year discussing how the evidence that a sodium-restricted diet, which does lower blood pressure, is short on proof that it also lowers the risk of stroke and cardiac events. Knee jerk hormone replacement therapy for postmenopausal women proved to be a big mistake. But we have been prescribing long-term antipsychotics without question for more than 50 years, and I applaud Dr. Insel for asking us to at least reconsider the status quo, whether it’s how we establish our diagnostic criteria or the assumptions we make about what treatments best help all patients.

Dr. Miller is a coauthor of "Shrink Rap: Three Psychiatrists Explain Their Work" (Baltimore: The Johns Hopkins University Press, 2011).