Nazi Extermination of Mental Illness

IIn 1922 Alfred Hoche a German psychiatrist co-authored a document demanding the extermination of persons he believed were a burden to society. In 1933 Adolph Hitler followed up on this by introducing obligatory sterilization of people with diseases he believed to be inheritable including mental retardation, schizophrenia, affective psychosis, and alcoholism. In July 1939 a plan was developed with the assistance of leading psychiatrists for the extermination of this group of people. Torrey and Yolken in their analysis of the literature believe that the entire population of people with schizophrenia (between 220,000 and 295,000 people) living in Germany at the time were either sterilized or killed. After the invasion of Poland the systematic murders of patients in various psychiatric hospitals were carried out. There are reports of only two psychiatrists who chose to stay with their patients and both perished. This plan to eliminate schizophrenia did not succeed probably because it is not entirely a genetic disease. We should never forget those whose lives were taken during this time and how and why they they were killed.

Year End Reflection on Those Taken From Us

There are certain times of the year such as religious holidays, anniversaries and the New Year where I find myself reflecting on those people who are no longer with us. As we come to a new year and the end of the first decade of the 21st century that is one of those times. As a son, I think about my parents which leads me to remember other relatives and dear friends who have died and whom I miss. As a Jew I think of the Holocaust and the extermination of millions of people who were murdered because they were  born Jewish. I know history is filled with other similar events which have occurred even in the recent past and may approach the evil nature and magnitude of Hitler’s work.

E. Torrey Fuller
E. Torrey Fuller

People with Schizophrenia Also Targeted by Hitler

As as a psychiatrist,  I also find myself  reflecting at these times on the systematic murder by the Nazi’s  of people because they had a mental illness! This addition to my personal memorial list is relatively new to me since I only recently became aware of the details of Hitler’s systematic singling out mental disease,  especially schizophrenia due to recent writing of E. Fuller Torrey, Robert Yolken and others. Yes,  I had  known how the Nazi’s in their attempt at racial purity were targeting other groups in addition to the Jews but I did not appreciate how people with Schizophrenia were being especially chosen. I was originally alerted to this piece of history by an article in Psychiatric News by Mark Moran in November of this year which also referred to an article by Torrey and Yolken in the September 2009 issue of the Schizophrenic Bulletin

Psychiatrist May Have Given  Birth to this Plan

Alfred Hoche
Alfred Hoche

Some further review turned up  additional information which suggested that Hitler’s thought process on this may have had it’s roots in events that occurred in 1922. At this time the psychiatrist Alfred Hoche and the lawyer, Karl Binding, published a document titled “Extermination of Life Unworthy Creatures” , using that ominous term for the first time and demanding extermination of persons who constituted “a burden” to the society, ravaged by World War I. They argued, in this document, that excessive humanitarian ideas be abandoned in the interest of what they called  “the higher state morality” implying that the existence of an individual is worthless if unfitting to the interest of society.  Shortly after Adolf Hitler took power in 1933, an act was passed, translated as Act on Preventing an Inheritable Burdened Progeny” The act introduced the obligatory sterilization of persons suffering from inheritable diseases, including, among others, mental retardation, schizophrenia, affective psychoses, epilepsy, and alcoholism. Implementation of the act, associated with the sterilization of approximately 350,000 persons in Germany, induced a wide discussion during which only the Catholic Church expressed a negative attitude toward the act.

Physicians Including Psychiatrists Participate in Extermination Plan

The next stage was the elimination of these people as well as the Jews. The approach to the Jews is well documented. However how Hitler utilized physicians including psychiatrists to approach the eliminations of psychiatric patients was not as well understood at least by myself. In July of 1939, an agreement between Hitler, the Reich Chancellory head, Lammers and the leader of the Reich’s physicians, Dr. Leonardo Conti, resulted in the formation of a strictly secret commission for the extermination of patients, directed by Philip BouhIer and called T4 (according to its official address at Tiergartenstrasse 4, in Berlin). The commission included, among others, recognized professors of psychiatry and neurology: Carl Schneider from Heidelberg, Paul Nitsche from Halle, Werner Heyde from Wurzburg. The commission was to choose methods of extermination (at the beginning carbon monoxide was used) and provide opinions on the lists of patients submitted for extermination by psychiatric hospitals, using official questionnaires. This occurred two months before the invasion of Poland. Apparently gold fillings were removied from the teeth of the deceased and used to partially pay for this program. Torrey and Yolken in their analysis of the data estimate that between 220,000 and 295,000 people with schizophrenia were either sterilized or killed which according to them represented all of those people with schizophrenia living in Germany at the time.

Extermination Plan Continued After the Invasion of Poland

After attacking Poland in September, 1939, the Germans began in the very same month a systematic murder of patients in Polish psychiatric hospitals that were situated in the captured parts of the country. The action of murdering these patients  took a similar course in all psychiatric hospitals.HItler The schedule was typical of Nazi mass crimes, followed a specific plan, and was performed scrupulously. After taking control of a hospital under a German director, no patient could be released from the hospital under threat of the death penalty. All the patients were counted and transported out in lorries to an unknown destination. Each transport was accompanied by armed soldiers from special SS detachments, who returned without the patients after a few hours. The patients were said to be transferred to another hospital, but circumstances showed that they had been killed.

In October, 1939, approximately 1,000 patients (children and adults) of the psychiatric hospital in Owinska, near Poznan, began to be transported out in an unknown direction. At the same time, a chapel and a rich, 100-year old medical library were destroyed. The hospital was turned into SS barracks and burned at the end of war. Extermination of patients from the hospital in Owinska requires special attention since on that occasion for the first time new methods for the mass killing of people were implemented. Investigations conducted after the war by the Commission for Examination of Nazi Crimes demonstrated that the special Gestapo unit  took care of the patient evacuation. The patients, dressed only in worn clothes, were transported out in lorries, each lorry accommodating 25 patients and some armed SS men. Distressed and protesting patients were quieted with injections of narcotics. According to witnesses, the lorries drove first toward Poznan where the patients were crowded into an old fort.  Each of the bunkers accommodated approximately 50 persons. The gates were sealed up with clay, and carbon monoxide was fed into each bunker, killing the patients within 10-20 minutes. Corpses of the murdered patients were dragged out by a group of prisoners of the fort, and other prisoners transported them and buried them in a forest close to Oborniki.

On December 7, 1939, approximately 1,200 patients were transported out of the neighboring psychiatric hospital in Dziekanka, near Gniezno. Selection of the patients for the transport was made personally by the hospital director, Ratka, who had just changed his citizenship to German and put on an SA uniform. Later on, the hospital kept providing psychiatric services for patients of German nationality and also served other, peculiar aims. On orders from Berlin, the hospital was disguised to represent a place of burial of the exterminated patients even if most of them had never visited the hospital. Families of the patients were falsely informed that the patients being searched for were buried at the hospital cemetery, and the families were even charged for the care for these graves. After the war, it was found that the psychiatric hospital in Pruszkow near Warsaw played a similar role. Families of the murdered patients were referred to the hospital and told that their relatives had been brought to the hospital, but died natural causes.

The sanatorium in Koscian for neurological and psychiatric patients lost approximately, 500 patients who were murdered and the institution then appropriated for other purposes. Patients in psychiatric hospitals in Warta (approximately 580 patients), Gostynin (approximately 100 patients), and Choroszcz (564 patients) were shot in the neighboring forests while patients of Kochanowka hospital (approximately 540 patients), Nazi loading on trainnear Lodz were killed in the sealed lorries using engine exhaust. In the psychiatric hospital of Lubliniec, 194 children were killed with high doses of luminal. The existence of the psychiatric hospital in Kobierzyn, near Cracow ended on June 23, 1942. The hospital was surrounded by soldiers in helmets and SS uniforms, the patients were loaded into lorries and cattle trucks, and the patients were transported to Auschwitz to gas chambers. Severely ill patients were transported to the hospital cemetery and shot there. A total of 566 patients died in that action.

The above data that originated from individual hospitals do not unfor­tunately create a complete image of the extermination of patients. It is difficult to estimate, e.g., how many of the psychiatric patients in the hospitals died due to drastically lowered food rations. Systematic starvation increased the mortality of patients several fold. It should be mentioned that this statistic does not pertain to patients of German origin who were fed better. The numbers of known victims also fail to include crimes which have not been documented. At the end of the war, the Nazi authorities destroyed evidence of their own crimes, as they pulled back from the captured territories. In most cases, extermination of patients was executed with no preliminary formalities (in the Reich it was preceded by filling in of questionnaires) and unexpectedly. The data quoted above originated from hospital registers that escaped destruction or from secretly prepared lists of those patients who were transported out of the hospitals.

Most Psychiatrists Don’t Protest but Two Psychiatrists Chose to Stay with Their Patients

I apologize for somewhat wordy unpleasant detail of this blog but I felt the story had to retold. My source for much of the above detail which I have shortened comes from the previously mentioned reference  Project Inposterum.

Torrey made the  point of emphasizing how while psychiatrists played a leading role in these horrendous events, he is not aware of any protests against the policy from organized German psychiatry. He notes “if you wanted a bright future in Nazi Germany you would not be enhancing your prospects by saying “we shouldn’t be doing this.” However the above link  gives two instances in Poland where psychiatrists chose the path of staying with their patients. Dr. Józef Bednarz, (see date of 1932 in this link ) Director of the Psychiatric Hospital  in Swiecie in Wisla, who rejected the chance to escape, did not want to leave his patients, and was shot with them in November of 1939.

Grave of Dr. Halina Jankowska
Grave of Dr. Halina Jankowska

Dr. Halina Jankowska, the eminent psychiatrist, and her nurses on  August 23, 1944, during the Warsaw Uprising rejected the chance to leave their patients in the Hospital of Saint John of God and died with them in the ruins of the bombed hospital

How Did This  Extermination Effect the Future of Schizophrenia ?

Torrey and Yolken also make the point that the Nazi reasoning  for killing patients with schizophrenia was also founded on an erroneous notion that the disease was entirely genetic. In fact the number of existing cases or the prevalence of the disease after the war was low as expected, because of the killings.  However the incidence or number of new cases was high suggesting that factors other than genes played an important role in schizophrenia. Studies have  found that the incidence rate in Germany 20 years after the last patient was sterilized or killed were 2 to 3 times the rates in the US and England . It was postulated that the most likely explanation is that social conditions after the war produced environmental factor such as famine, illnesses  and poverty which led to an increase in new cases of schizophrenia

Of course what ever we can glean from the results of this horrible “experiment “ will never provide any justification for what was done. I do that believe that we are obligated to use  any data that emerges from this event to better help people in the future just as we can use the data from other unspeakable Nazi experiments on helpless victims  to make people’s lives better in the future. In doing so we need to never  forget those whose lives were taken including  why  and how they were killed.

May This Be A Good Year for All of You

While I chose to write the last blog of the year on a somber topic, I do want to also end with an optimistic greeting to all of you.  I appreciate the interest and encouragement that many of you have given me as I have undertaken this weekly blog . I know that there are many people who share my interest and concern about educating the public about all aspects of  mental illness.

I wish everyone of you a most Happy New Year.

Comments Are Always Welcome

Condolence for Soldier Suicide

At the present time if a U.S. soldier who served in Iraq or Afghanistan is physically and/or psychologically injured and subsequently commits suicide, his or her family will not receive a Presidential letter of condolence as will soldiers who die by other means. This is unfair and hurtful to the families with loved ones who have volunteered to serve their country and die as a result of their service. A spokesperson for President Obama said that the policy in regard to who should receive a letter of condolence is currently undergoing a review. This issue is discussed and it is suggested that letters be written to the President, Secretary of Defense and members of Congressas well as professional organizations such as the American Psychiatric Association which could influence these people, urging that the above policy be changed so Presidential letters of condolence will also be written to soldiers who have died from suicide.

There is No  Presidential Condolence if a Soldier Commits Suicide

Obama at deskIf an American soldier is wounded and then dies or is killed immediately in Iraq or Afghanistan,  the President of the United States and The Secretary of Defense write a condolence letter to the family. However, if an American soldier is wounded physically and /or psychologically during his action in Iraq or Afghanistan and then commits suicide there is no letter of condolence written to his or her family by the President and the Secretary of Defense.

There are now more suicides among our combat troops than all those killed by enemy fire in Iraq and Afghanistan together according to a recent CNN Report on this topic. There have been 354 suicides thus far in the year 2009 which is more than the 335 total of combat deaths which occurred in Iraq and Afghanistan combined . While most of the suicides don’t occur until the soldiers have returned to the states at least one third have taken place in Iraq and Afghanistan. The US Army and the National Institute of Mental Health are partnering to assess risk and resilience in service members in an epidemiologic study of mental health, psychological resilience, suicide risk, suicide-related behaviors, and suicide deaths. While this is quite important, it does not address the failure of our leaders to knowledge the sacrifice of those psychologically injured soldiers who commit  suicide. This is a serious defect in our moral fabric.

While Presidents since Lincoln have been writing letters of condolence to families, there is apparently unwritten policy that this does not include families of soldiers who have committed suicide. Lincoln at deskmagesIt is easy to imagine how hurtful that must be to a family who is burying a son or daughter who came back from war with psychological problems and then committed suicide or perhaps killed themselves while still overseas. The New York Times recently wrote a story about one such family. After Gregg and Janet Keesling’s son, Chancellor, killed himself in Iraq in June, the family received a folded flag, a letter from the Army praising their son, a 21-gun salute at his burial and financial death benefits, but not a letter of condolence from President Obama.

A spokesperson for President Obama said that the policy in regard to who should receive a letter of condolence is currently undergoing a review.

What is Going on Here?

I heard one report state that many soldiers would feel that their comrades combat death would be somehow demeaned if the families of soldiers who suicided were given an equal letter of condolence. Another view is that treating suicide the same as other war deaths might encourage mentally frail soldiers to take their lives by making the act seem honorable. These ideas may be influencing the thinking of some our military leaders and perhaps the President. I hope not.

If this is the case it is misguided thinking which resurrects the stigmatization of mental illness. These conditions are not something that anyone chooses to have. This includes depression, post traumatic stress disorder and traumatic brain injury all of which can be secondary to combat experiences.Depressed Soldier_AFP,0 Soldiers cannot will themselves to avoid these conditions anymore than a soldier can avoid a bullet aimed at their head or an explosive device that goes off under their vehicle.  While training and good support can reduce the odds somewhat but once you are in a combat zone you are vulnerable to injury. I also know of no evidence that people on the verge of suicide would be driven to do it because their family would get a letter of condolence.

There is a famous cartoon which shows a therapist giving a patient a large slap in the face while saying “Snap out of it”  and the title of the cartoon is “One Session Therapy”. If there is humor in this, it is because some people have the phantasy that it is that easy to put aside psychological injury. Anyone with knowledge about mental illness and clinical experience knows that it is not true.

A soldier who suffers to the point of  ending his or her own life, has to be recognized as someone who has suffered as much as anyone can imagine.

As far as the idea that some deaths deserve a letter of condolence and some don’t, consider this. If a soldier in Iraq is working in the kitchen and the stove catches fire leading to his demise, would this death be any less deserving of a letter of condolence than a soldier who was caught in an enemy ambush? Would the loss be any less deserving of the latter soldier if it turned out that he made a foolish tactical error leading to his being killed as compared to someone who was brave enough to fall on a grenade to save others lives? Of course not. Similarly, would you compare a soldier who faced many horrific combat situations and developed PTSD with another soldier who became severely depressed shortly after his  plane just  touched down in the combat zone if both ended up having intolerable suicidal feelings which led to their death? Would one family be deserving of a letter of condolence and another not? I don’t believe that we judge some soldiers deaths as being more worthy than others.

Yes, we do give out special medals and recognition  for unusual acts of bravery but these in no way diminish the sacrifice that others have made.

They Are All Heros
They Are All Heroes

All of the soldiers that we have discussed above would have volunteered to serve in the military and today everyone knows that this most likely could mean exposure to combat. For this they deserve our thanks and when they and their families have made the supreme sacrifice they deserve at least a letter of condolence.

Action to Fix This Situation

What can we do to see that the families of soldiers who have suicided be given the same letter of condolence as families of other soldiers who have died in the military?

We can a write a letter to the President of the United States, Secretary of Defense and our Congressperson and US Senator. Those of you who are mental health professionals should clearly state this in such correspondence and explain how you feel about this situation especially based on your understanding of mental illness. The email address to write to the President is :       president@whitehouse.gov       There is every indication your email would be read by his staff and a sample of them are often shown to the President.  If many of the readers of this blog were to write him a note it is bound to make an impression as this issue is under consideration by the President at present. If you would like some tips on how to write to the President I found this brief article .

We should also ask our professional organizations if they have not done so already to weigh in on this matter. I am writing a letter to my colleague Dr. Alan Schatzberg, President of the American Psychiatric Association (APA), requesting him to consider asking the Board of Trustees to pass such a resolution if this has already not been done. This last November I finished my term as Past Speaker of the Assembly of the American Psychiatric Association and left the Assembly. So while I cannot sponsor such a resolution myself anymore,  I will ask my former colleagues there to also consider doing so . Both the Board of Trustees and the Assembly must approve position statements in the APA. I would hope that once this organization takes it on they will be able enlist the support of our colleagues in the American Medical Association as well as other professional groups.

By all indications President Obama is a compassionate person and I believe that once he has the facts and has heard from the public including mental health professionals, he will do the right thing.

I welcome your comments on this issue.

Extra Rx Meds for Disaster Preparedness

After recently moving to California and experiencing a mild earthquake I decided to obtain an extra month supply of prescription medication for my family and myself as this is recommended for disaster preparedness. I found out that this is a very difficult thing to do and furthermore most insurance companies won’t pay for it. Experts working in disasters know that people frequently don’t have access to their everyday medications. While there may be some exceptions such as concern about addiction or suicidal tendencies, most people should have the ability to obtain an extra month supply of their medication above that which is usually prescribed for them. The author co-authored a resolution at the Assembly of the American Psychiatric Association that would have this organization work with other medical groups and interested parties to advocate that laws and regulations be changed to allow individuals to have extra medication on hand for emergencies and disasters. The readers of this blog were asked to check the situation where they live in the U.S. or internationally in regard to this problem and to report in the comment section of this blog.

Rock and Roll with A California Earthquakeseismogram

About a year ago my wife and I relocated from New York to Southern California. After many months of remodeling our new home , building a home office and setting up my practice I thought we were  settled and I  was now a Californian. Then I experienced my first earthquake. It was a relatively mild one I am told. But for 15-20 seconds it was a little rock and roll in our new house. We had lived in San Francisco many years ago during my internship but I had forgotten what these shakes feel like and how helpless you actually are during these occasions.

Sorry Your Insurance Won’t Pay For Extra Medication

BAG-SUPPLIES-EARTHQUAKE-W12So not surprisingly, I was mobilized to action as people often are when they experience an episode of helplessness. I ran out and  bought flashlights , a crankable radio, picked up a months supply of water and a first aid kit. I even bought “museum putty”  a product I never heard of before which fastens objects on bookcases and shelves to prevent damage during a shake.  Then I went to my local pharmacy to be sure we had at least an extra  month supply of our prescription medications for our emergency kit.  By this I mean an extra month that would be in place even if the usual month supply or 90 day supply was running down. My pharmacist says sorry you are not authorized for such . Well of course I could get my physician to write it for me or being a licensed physician I could write the prescription myself. However the pharmacist informed me, of what I should have realized, that even if I had a prescription for an emergency supply of medication, my insurance prescription coverage wouldn’t pay for it. The same rules apply to online purchases.

People Can Run Out of Medication  During A Disaster

I am not a newcomer to the study  of disasters. I  had served on the Dimensions of Disasters Committee of the American Psychiatric Association.  For the past several years I have taught a course for psychiatrists at the annual meeting of the American Psychiatric Association  with a New Jersey psychiatrist Dr. Joe Napoli . I also edited a book in this area with Dr. Bob Ursano Chair of the Department of Psychiatry of the Uniformed Services School of Medicine . We taught the participants of our course about the common knowledge among disaster experts that the most frequently dispensed medication to people in the aftermath of a disaster is not a tranquilizer or a sleep medication but rather prescriptions for the everyday medications, which they take and now no longer have access to or have run out of them.

Just recently I read the position statement of the American Association for Geriatric Psychiatry about Disaster Preparedness  sent to me by Dr. Morty Potash, a psychiatrist from New Orleans . In it was mentioned the fact that during Hurricane  Katrina  more than 56% of the persons who went to the Astrodome for shelter, 5,846 persons, were older than  65 year of age. Similarly, access to needed prescription medications represented a significant problem. Obviously, it can also be a problem for people of every age. Furthermore, the most common visits to Houston  Texas Emergency Rooms by people displaced by Katrina were for refills of existing medications suggesting that the usual resources for refills were absent. It stands to reason that there is a possibility of medical offices  being made unavailable by the disaster, physician and staff being injured or predisposed caring for other victims.

A Reserve Supply of Medication is Needed

Patients will need to have at least a month supply of their medications. We are talking about  the common heart medications, blood pressure medications, thyroid , insulin and other hormonal treatment , pill_bottlesantibiotics, medication for prostate and urinary  problems as well as cancer therapies and many less common types of treatment

Psychiatric patients will need access to their medications of course. Patients taking medication for panic disorder would be likely to have an exacerbation of attacks should they run out of medication and certainly the stress of an emergency situation would make this even more likely. Patients taking medication to stabilize a mood condition such as one of the bipolar mood disorders could decompensate as could a person with schizophrenia who no longer has access to antipsychotic medication . While it can take a few weeks, depression can reoccur after cessation of antidepressants.  The result of the return of serious depressive symptoms can be suicidal behavior . Research demonstrated that psychiatric medication among Manhattan residents following the World Trade Center Disaster increased.

As I mentioned, many people do get a 90 day supply of medication and may even have a prescription for three renewals .The ability of physicians to write prescriptions is regulated by the states with federal laws governing certain type of controlled medications. There may be some variations in different parts of the country . It appears to me that most states will not allow a full month supply of medication to be held on a continued basis ( with rotation if meds become outdated.) Also most if not all  insurance  plans do not allow or will not pay for  a renewal until a short time before the drugs run out which means that you can’t guarantee that you can put away a supply of medications for emergency planning.

It would seem logical that a physician should have the ability to write a prescription for an extra month supply of medication and provide instructions for rotations of the drug if there is concern about it being outdated. It also seems appropriate that insurance companies should pay for this extra supply of medication even though in most cases it won’t be used and will just be out there being rotated. ( I am sure the pharmaceutical companies won’t mind this situation.)

There Can Be Exceptions

It also is true that under some circumstances a physician may not want the patient to have more than a limited supply of a particular drug. This could be because the effects need to be evaluated before more meds are prescribed or perhaps because the physician may be concerned about potential addiction problems or even suicidal tendencies. In such situations the physician  properly might not write a prescription for extra medication  even if he or she were authorized to do so.

Can We Change the Regulations and Laws?

As a recent Past Speaker and therefore a member of the Assembly of the American Psychiatric Association I co-authored with several other psychiatrist including Dr. Napoli, mentioned above and Dr. Arshad Hussain from  Missouri who is  past Chair of the APA Committee on Dimensions of Disaster, a resolution to have the American Psychiatric Association to investigate this situation and advocate with other groups such the American Medical Association on the national level and State Medical Associations on the local level  so legislative regulations are altered to facilitate this aspect of disaster planning. This was approved by the Assembly in November in Washington D.C and I am hopeful that this organization will take up the advocacy with other interested parties mentioned above as well as with government agencies and.  insurance companies. I also spoke with my California State Assemblyman ( who happens to be my son ) who will look into this issue further in my state. These types of changes don’t occur quickly or easily.

Can You Survey Your Local Situation  ?

Although this weekly blog has only been up for a little more than two months we know that we are read in many states throughout the US as well as many countries. Can those of you who are iFinger pointinginterested in this issue check it out and determine if the average person can get an extra supply of medication for emergency preparedness where you live and would most insurance companies pay for it? Please send a comment on your findings to this blog ( below ). We will put it on within 12-24 hours. Perhaps we can get the data that will motivate those who make the laws and regulations. The power of the Internet can also help us get such information to the people who can make differences on  this issue both in the US and elsewhere. Lives could even be saved in the next disaster event.

Your Comments and Data on this Topic is Welcome

The Genome and Psychiatric Care

This blog discusses how the understanding of the human genome and the construction of the human chromosome may be able to influence psychiatric care. Psychiatrists have previously relied on history ( including family history ) with a mental status evaluation to make a diagnosis and develop a treatment plan. Unless the patient had an identical twin with similar symptoms, family history only has a limited value in providing assistance in making the diagnosis or in predicting response to medication. The author originally hoped that this would radically change with the breaking of the genetic code and the human genome project. However thus far the research has limited value in the application to current psychiatric care. There is some promising research in regard to schizophrenia and genetics as well as some recent work concerning bipolar disorder and post partum depression, which is reviewed. The use of biomarkers particularly in brain imaging and the use of the EEG for the prediction of effectiveness for antidepressants are discussed. Several ethical considerations related to this type of research are also raised.

How Understanding the Human Genome Can Influence the

Practice of Psychiatry

The Human Genetic Sequencing Project

In April 2003 the human genetic sequencing project was completed.  This meant that the 25,000 genes  (which are made up of 3 billion chemical bases) in the human DNA were defined and stored in computers. dna_530I am far from being a biochemist and am in no way an expert in this area. In fact I didn’t even understand that it would take another three years until we understood the  construction of the first  human chromosome. However that did not stop me from imagining what the future of psychiatry and all medicine would be like after this great accomplishment.

The Decision Process Before The Genetic Code Was Broken

When a patient comes to me I take a detailed history and do a mental status examination (the psychiatrist equivalent of the physical examination except it is by talking). I inquire about the patient’s family history including medications used by the patient and any medications  used by close family members who have the same illness. I make a diagnosis of the patient’s condition and then I  may suggest psychotherapy or medication or a combination of both.

Let us say that the patient has a major depression and required an antidepressant medication. I would have many choices from which to choice. I would base my decision on the latest research. Job+InterviewI may be influenced in my choice of which medication to use if the patient were highly anxious or had insomnia since some medications are more activating than others and some are more sedating.  I would inquire about the patient’s sexual functioning since many of these medications can have sexual side effects. Some medications might help various types of pain or obsessive symptoms which could  influence my first choice of a medication. I may have to take into account the patient’s financial status in regard to a choice of a less expensive generic medication or if there were a list of medications, which are less expensive in regard to their insurance coverage. All these factors need to be considered  not only with the first choice of medication but very often a medication may be changed or a second one is added and these factors would all be reconsidered.

Very rarely would genetic factors be taken into account in deciding on which medication should be used. (Family history would be helpful in making the diagnosis.) If the patient should be an identical twin with the exact same genetic make up than I would pay exquisite attention in considering a similar diagnosis and choosing the same medication. This occurs only once in every 250 births. If such a person needed a medication I could be pretty sure that their side effects and efficacy probably would be identical or nearly the same as their twin. Of course even identical twins  can have different life experiences  and therefore their total psychological make up and environmental exposure would not be the same. If a sibling, parent or child  had a good or a bad experience with a particular medication that might influence my decision but it would have no where near the significance to me as the situation where  the patient would be an identical twin.

How I Imagined the Decision Process Would Be  After the Genetic Code was Broken

I had this vision which I told my residents and students  how, in the future,  patients would come to doctors and would have a card in their wallet with their entire human genetic makeup encoded . Elecom-Magnetic-Card-ReaderThe physician would put the card  into a device on his or her desk, which would  read it and provide information as to any illnesses for which  the individual had a clear genetic propensity. It would also tell us the exact medications, which would target and cure these illnesses. In fact it would be possible to construct viruses ( which are DNA particles ), which could alter genetic structure and eliminate the diseases or even the propensity for them. Not only would cancer be cured or prevented but also so would the major mental illnesses  I had read about these possibilities in he past and now that the secret of the human genome had been unlocked , I thought that it was just a matter of time before this became a reality.

How Things Now Stand

I am sorry to report that my fantasy has not yet become a reality.  The journals and scientific meetings are filled with various pieces of research that might contribute to the puzzle . There are new companies, which offer saliva or blood tests, which will examine DNA. However,  there are no genetic research  tests, which have substantially changed clinical practice in the past several years.

I would like to give you a sample of some the latest genetic research so you can get a glimpse of where we might be heading with the expansion of our understanding of the genome.

Schizophrenia

Even before the genome was completely mapped there were many connections to various regions of the  chromosomal structure that suggested linkage to schizophrenia.chromsome

More recently the International Schizophrenia Consortium pooled genomic data from various data bases and analyzed 8000 schizophrenic patients and 19,000 healthy controls. They found differences in a region on Chromosome 6 between schizophrenics and the controls. This chromosome area is related to the immune system response to infections and autoimmune diseases.

Bipolar

Research by the same group demonstrated that  there were genetic similarities in the genome of schizophrenic and bipolar patients that were not shared by nonpsychiatric diseases such as coronary artery disease and rheumatoid arthritis which suggests that these genetic variations are specific to psychiatric disturbances.

Post Partum Symptoms

In still another  study, published in the  American Journal of Psychiatry November, 2009,  showed that genetic variation on specific chromosomes may increase the susceptibility to post partum mood symptoms.

The researchers were able to show some  polymorphisms or  variations of Chromosome 1, 2, 9 and 14 which could indicate susceptibility to postpartum  symptoms . There is a wide range of postpartum symptoms as I outlined in a previous blog. It is essential that evaluation of such symptoms  be a part of the pre and post natal care of all women. It may be that the these findings will be helpful in the future for diagnosing and treatment of this condition.

Effectiveness of Antidepressant Medication

There  has been some preliminary research to suggest that people with certain alleles related to the serotonin transport system had positive or negative responses to SSRI antidepressant medication . However  the latest research which I could find in regard to whether genes and chromosomes will allow us to predict the effectiveness of particular antidepressant therapy was far from conclusive and suggested that there would most probably be multiple interacting genetic factors.

As promising as all this research seems to be, it has not yet changed the way psychiatric diagnosis is made or how treatment is plans are developed. I hope that this will happen in the next few years. Down the road  researchers may also be able to design drugs to correct the chromosomal variations that are  due to dysfunctional protein arrangements.

Biomarkers May Have to Do if We Don’t Have Complete knowledge of Genetic Makeup

Research has also been moving forward ( perhaps even faster than genetic research)  in the area of biomarkers.  We have known for a long time that an elevated serum  cortisol level, could indicateEEG an emotional state such as anxiety and/or depression . This is not specific enough to be of great help in making a diagnosis which we could make without these tests. However more specific biochemical tests might be helpful in making the diagnosis even though we don’t have the specific genetic markers.

Similarly, if we can use brain imaging to see changes in the brain structure with various psychiatric conditions such as schizophrenia, this may help make the diagnosis.

We may be able to  even use various tracing devices to follow the uptake distribution and utilization of various medications in the brain, which should be able to help us in our decision making processes. Even a non evasive procedure such as an EEG may tell us if an antidepressant is working.

The research described above is just a small sample of the explosion of work that is being done .

Ethical Considerations in Utilization of Genetic Research

Even before the sequencing of the human genome , questions have been raised about  the ethical considerations that sophisticated knowledge of genetics as well as advanced biomarkers  will bring up.

For example with genetic engineering, not only might physical and mental illnesses be avoided but also so might psychological traits where genetic links were discovered. Could this create adverse impact on future generations?

There are also important questions as to how genetic information will be acquired and used. Will individuals be giving full informed consent for this testing and use of their genetic material ?  Will there be mandatory genetic testing? Will all newborns have to undergo genetic testing for various conditions?

Also will the knowledge that one has an illness which hasn’t shown it self yet  or the propensity to have an illness create problems for people? This may be especially true if there is not an adequate treatment for an illness. For example, not everyone would choose to be tested to determine if they are likely to get Alzheimer’s Disease especially if there were nothing to do to prevent it.

What will happen if the insurance industry gets hold of  genetic testing results?

Fortunately the new healthcare legislation is supposed to prevent any discrimination on the basis of preexisting conditions . I assume this will also apply to preexisting genetic variations, which are expected to  create various physical and mental conditions.

It looks as if we have a long road to go before physicians will have  a genetic code reader on their desk  and there may be some important ethical questions along the way.

I welcome your comments of this topic.

Mental Health & The Developmentally Disabled

Tierra del Sol is a non profit organization serving people who are developmentally disabled. It has a small campus in Sunland, California where each day 250 adults are bussed in to participate is an individually designed curriculum. The programs include farm work, computer learning, art classes and kitchen training. People with developmental disabilities have a high prevalence of mental health problems, which can be difficult to diagnose. Mental health services for this group are more time consuming and therefore more expensive. As we are reevaluation our health care system in the U.S., this is the time to be sure that adequate mental health care for this is group is included in our health care program.

Tierra del Sol art

computer_lab_01aAre the Mental Health Needs of the Developmentally Disabled Being Met?

Tierra del Sol – Model Center for People with Developmental Disabilities

I recently met Steve Miller, the Executive Director of Tierra del Sol a non profit organization that works with developmentally disabled adults in order to train and help them function better in the workplace and in life. I accepted his offer to visit their beautiful campus in Sunland, California just outside of Los Angeles.

The atmosphere seemed to me to be a mixture of a small tranquil estate and a community college. I learned that one of the  beautiful buildings was once a training school for Catholic nuns that had its origin in the 1900s. In the last 15 years it has evolved into a productive training program where people with significant disabilities pursue a range of interests and training which will expand their options for participating in their local communities.

Personalized Curriculumequestrian_01a

Each day about 250 of adults with moderate to severe disabilities are bussed to the campus. Each of them has their own specifically designed curriculum. I walked through a barnyard area with farm animals where some of the people will tend the animals, learning skills, which can be useful in the still vibrant farm industry in California.

Upon entering the school building, I saw a series of comfortable class rooms humming with busy interested students although this was obviously not your typical college population. There was a computer class with older but functioning computers recently donated, which connected to the Internet. There was a knowledgeable instructor called “coach” and the activities ranged from doing the simple task  of connecting words with pictures to a very bright but dyslexic women who was trying to learn to write poetry. The art class which included ceramic making was an eye opener as among the busy diligent students using various media were some who were producing some outstanding drawings and paintings. The coach told me that most prefer to copy various pictures or images rather than draw from live models although they clearly bring in their own interpretations. There was one pencil drawing of an American Indian that I thought showed sensitivity and great depth of felling.  I learned that Tierra del Sol maintains a renowned gallery in the community called First Street which has earned some of these artists tens of thousands of dollars in commissions.food_service_01a-2

We detoured to the kitchen which reassembled a commercial set up of a moderate size restaurant. The students under the supervision of the coach were learning the workings of the kitchen at the same time that they were preparing meals to be used at the center. Many of them would be learning relatively simple tasks but along with their diligent work ethic, this would allow them to do work and make contributions to the community.

Students Provide Volunteer Service to the Community

As I chatted with Mr. Miller and his staff I learned that nearly everyone currently served on the  campus is engaged in community service – or “service learning” as colleges and universities refer to it. They will assist others to distribute food and clothing for impoverished seniors and children; care for abandoned pets, maintain community parks and assist understaffed hospitals, daycare centers, museum, libraries etc.

Many of the students move from volunteer service to wage paying employment at more than 35 private employers throughout the San Fernando Valley.  Additionally their newest program, NEXUS, is currently serving more than 50 young adults by supporting their enrollment in community colleges and other mainstream post-secondary education venues. In total they serve about 500 hundred people split about 50/50 between campus based preparatory programs and actual mainstream community life endeavors.

What are the Mental Health Issues?

I was particularly interested in how the mental health needs of this population were being addressed. I was not surprised to find out that it was not easy to arrange mental health and psychiatric care for those who needed it.

People with developmental disabilities have a high prevalence of mental health problems often at 30% in many studies and can be as high as 60-67% if aggressive and disruptive challenging behavior is included.

When we consider the autism spectrum disorder, the current thinking conceptualizes it as brain dysfunction with many underlying etiologies. Mental retardation is present in 65% -85% of this group. The onset of mental illness as a secondary disorder  is also a relative frequently. It is also known that persons with mental retardation, autism and other pervasive developmental disorders may exhibit co-morbid anxiety disorders, such as generalized anxiety disorder, obsessive-compulsive disorder, phobia and other anxiety symptoms at much higher rates than in the general population

Persons with developmental disabilities are more likely than the average person to have experienced abuse in their childhood which is known to contribute and complicate psychiatric disorders. There are often co-morbid medical problems which can lead to psychiatric symptoms. Furthermore medication taken for epilepsy as well as other medical conditions can cause psychiatric symptoms and complications.

Problems in Diagnosing Psychiatric Conditions in Persons

with Developmental Disabilities

Due to the nature of many developmental disabilities, there are inherent difficulties in diagnosing psychiatric disorders in this group. There are many reasons for this problem. Cognitive and communication difficulties can lead to unique modes of coping which can be mistaken for a psychiatric disorder. For example a person with such a condition might “self sooth” by talking to themselves which could easily be mistaken for a psychosis.

A person with a limited ability to communicate would not be able to provide information which would allow a mental health professional to easily make a diagnosis of a psychiatric disorder such as depression. Information such as changes in weight, sleep, feelings of sadness or even suicidal thoughts is necessary information for diagnosis and treatment. However a person with developmental disability might not be able to communicate these things. Similarly such information is required for follow-up in order to change medication or therapeutic techniques i.e. behavioral therapies could not be readily provided.

In order to make a psychiatric diagnosis in this population, develop a proper treatment plan and follow up it often requires close consultation with family, teachers and other care takers. In an environment of a program such as Tierra del Sol, the staff is often in the best position to facilitate the meetings which are necessary. They also can provide information needed for diagnosis and follow-up as well as be part of any behavioral treatment plan since they are people in the patient’s environment for most of the day.

Mental Health Services for this Group Time Consuming and  Expensive

Psychiatric services are usually time sensitive. Fees are at least in part determined by the time spent with a patient. Obviously working with this population requires an enhanced time commitment. These are some of the most difficult patients to treat and often requires special expertise and as described above, the use of many collateral interactions which of course is time consuming  MediCal or Medicaid or some other state insurance are often the only insurance which many patients have available to them. It is not surprising that it is difficult to find psychiatrists and other mental health professionals to provide the needed services to this population if the fee imbursement turns out to be relatively low as compared to the non disabled populations.

Now is Time to be Sure that Mental Health Care for this Group is Included

in our Health Care Programs

We are at time in history where we are reevaluating our health care system. We need to be sure that the people who are at the table in formulating our new health care plan understand all aspects of health care including psychiatric care and the delivery of this care to special populations such as those with developmental disabilities. The decisions that are going to be made will be based on cost issues as well as what is ethically and morally right. It is hard to believe that anyone would disagree that it is only right to provide needed services for those who with no fault of their own are developmentally disabled. Our society has a tradition of providing medical care for this group but appears to balk and come up short when we have to come forth with the funding needed to meet the cost of necessary mental health care. The prevailing thought is often that we don’t have an unlimited source of funding. However, if you look at the big picture, providing sufficient funding for mental health care in this population may very well in the long run be a very good investment. The result of proper outpatient treatment will prevent costly inpatient care. Psychiatric treatment which can diminish disruptive behavior or incapacitating symptoms will allow people to better participate in the type of programs described above at Tierra del Sol. This will allow many of them to be productive people doing some work or volunteering in worthwhile service. The impact reverberates on families, schools and on our entire society in a very positive manner.

I welcome your thoughts and comments on this important issue.