“XYZ…NOW I KNOW MY ABCs”

THE TRANSITION TO NONBINARY MEDICAL RECORDS

AND EMRs

It was hour 22 out of a potential 36 hour-long shift. Medical students, during third and fourth year, can be worked up to 36 hours straight without any legal backlash. The thought of this kept interrupting my sleep-deprived mind, halting my attention and shifting it away from the reading I wanted to get done before I had to do the entire shift over again the next day. Granted we were excused to return home for 6 hours to eat and sleep–they allowed us those minute luxuries–before heading back to resume the same drudgery on repeat.

I was seated next to six general surgery residents upstairs, and there was only one other medical student, a classmate, on the same exhaustive shift as the rest of us. All eight of us studied our screens still in silence, some of us too caffeinated and others not enough, across from the also never-resting glares of our computer screens which faithfully displayed our currently admitted patients on Epic—the almost universally employed Electronic Medical Record system. I was hoping by continually refreshing the home page or a phone call would bestow upon us the chance to escape the austerity suffocating the company of each other, would interrupt my attempts to absorb the linear words covering the pages of my textbook; there was no hope of me learning anything at this point and boredom became a dull aching symptom of this shift every night once 2 am rolled around. It was now 2:15. Then 2:30. The minutes were dragging mocking my exhaustion and reminding me, “you’ve got only 3 hours left until you have to pretend you’re not exhausted but jubilantly thrilled to enjoy this incredible privilege few are allowed to experience while internally cussing the residents and attendings as we treaded from patient room to patient room over the span of two hours during rounds…remember to prepare for any question they might ask you! Remember that these attendings will pimp you in front of the 4 other medical students who will show up for their shift at 5 am! LOL.”

I needed to get some of these words staring back at me from the page to sink in. The gallbladder…the pancreas. Two of my least favorite organs since they both tended to pull whatever shit they felt inclined to do so and mimicked the symptoms of all other abdominal organs. Pancreatitis, cholestasis, cholecystitis–my least favorite medical conditions. The symptoms differentiating them were so minute I really didn’t even care to learn about them.


Finally a device remembered now nostalgically as a landline telephone—an ancient relic sometimes seen in contemporary society mostly in hospitals and waiting rooms or your grandmother’s pungent house complete with a bowl of those strawberry candies no one else has ever once seen for sale at any grocery or 99 cents store—rang deeply and monotonously: an ornery tone. On the other end was one of the surgery interns who had 10 minutes previously left our cramped room to go check on his patients—or, more likely, attempted to find some form of respite from this stiff crowd of tired individuals.


On “nights” during general surgery, any page usually came from an ER physician requesting a consult—some ER resident who found an opportunity to pass the torch to some other resident in a different department and rarely did an emergent surgery ever result from such a consult. The surgeons would usually complain about this on our way down to respond to the page, grudgingly, and rightly so. The ER MDs were just as tired as the specialists but they had the option to defer action and shirk responsibility. If they didn’t have to deal with it–if it wasn’t a gunshot wound or a simple cut that required sutures–they would page infectious disease over a cold or surgery if a patient had diarrhea so they could continue sitting on their asses playing on their phones.

Thus we got paged for every headache or stomach pain. “Might be appendicitis,” the ER docs would say as if to justify their call. So we’d make the trek across the hospital at any hour of the night and morning to appease the ER residents, who when you were sleep-deprived, annoyed the fuck out of you with their laziness and immature shift of responsibility to whoever they could think of, any other MD because they knew any specialist resident would have to respond and take the responsibility for the patient the ER doctor should be caring for. So we’d walk past the ER residents, their feet up on their desk, on their phones watching videos, to provide a patient with whatever relief from “impacted bowels,” in layman’s terms constipation, which usually proved to be the underlying pathology. That was the “potentially life-threatening abdominal pain” ER would page surgery about for a “second opinion.” Granted sometimes a gunshot victim came in and that would suck to deal with but still, dude, constipation does not require a second opinion from surgery.


So the phone rang and indeed it was one of the surgery interns saying that he had just gotten a consult from the ER and would I and the resident to which I was assigned meet him in the ER. Of course. What was going on? He laughed. “I’d read up on the patient’s chart before you come down though.” “Well yeah but what’s so funny?” “You’ll see.” He made one last chuckle and then click. Confused but somewhat excited for the possibility of a particularly interesting case, we dragged our clogs down to the ER through the intricate maze of badge-protected corridors and hallways that architecturally made no sense and finally passed through the last automatic double door, and magically appeared in the ER. If I had been asked to find my way back alone I would’ve probably lived out my last days wandering the corridors of that hospital. I just followed my resident, who was always several steps ahead of me–never did we share a conversation–and hoped I didn’t fall asleep or lag behind far enough to where she’d turn a corner and be gone. Then I’d be screwed. So when finally the last set of doors opened and we were magically inside the heart of the the ER it seemed we had indeed fallen down the rabbit hole and into a sea of unexpected non-chaos. We passed all the residents, not once sharing a glance or making eye contact and plopped ourselves down in front of two computers next to each other. “Ok tell me what you find and I’ll look up the patient’s chart too. Last name is such-and-such MRN # 1234567.” We sat in what seemed like even more silence than we had shared before which lasted several minutes as we both poured over the ER resident’s admission note, the patient’s vitals, any labs that had come back, and the last 5 notes that had been written in Epic after previous medical encounters with this patient we were about to meet.

Well this was an interesting case but not for the reasons we were expecting. This wasn’t some episode of House, some perplexing and rare medical anomaly–a mysterious puzzle involving a vaginal tick and seizures. But there were an abundant amount of discrepancies in the patient’s medical chart, from one note to the next, and there were too many incongruences to make any sense of who we were about to meet.


First there was the patient’s name on top of the patient’s listed “gender,” which was displayed, as always, in the upper left corner of the EMR (electronic medical record.) When you pull up any patient on Epic, his or her name will appear in the top left and underneath the name will be his or her DOB (date of birth) and under that the letters XX or XY, indicating if the patient was female or male respectively. This was meant to be a broad overview of the patient—basic patient “identifiers,” as they are called in the world of medicine. Before reading any of past medical notes stored on the system or examining any labs or diagnostic images, the gender and the DOB serves to jumpstart the assigned MD’s cognitive process. The name, the DOB, the “gender” immediately invokes learned medical facts regarding associated risk factors based mostly on sex and age.

In fact, almost every medical note begins with something similar to the following: “Mr. Joffrey Baratheon is a 16 year old Caucasian male who presents with foaming at the mouth and bleeding from multiple facial orifices after consuming a glass of red wine. Of note, according to the patient’s fiancé, several of his acquaintances ‘have reason to want the patient dead.’ Significantly, the patient is the product of an incestuous relationship as his parents are siblings.” Something along these lines.


So each note starts with “identifiers” to call to mind any relevant risk factors—age, sex, race—as men and women, the young and the elderly, and different races of people carry personalized risks of developing certain medical conditions. This isn’t meant to subject patient’s to inequity or prejudice but are meant to ensure the polar opposite of unethical mistreatment: medically objective information regarding key risk factors that are essential in providing the most optimal medical care possible for each individual patient. Tailor a patient’s treatment around his or her risk factors and past medical history to help secure the best health outcomes of each patient as an individual.

Many readers already see where this is going, so I continue.


Our patient’s medical chart displayed a conventional female name but “XY” underneath it. Already I my thoughts whirled: was the name incorrect or was the listed “gender” incorrectly submitted into the EMR?

But it was the past medical notes contained within the patient’s file that created the most confusion. One note dated a month prior referred to the patient as “she” or “her” throughout its entirety while the following note identified the patient as a “he” or used the word “him” throughout its dictation. In fact, each note almost perfectly alternated from one to the next using those fundamentally different pronouns without any consistency.


Reviewing a patient’s chart before entering the room, which is always done by any MD before appointments or situations like ours, consults or Emergency Room visits, is intended to provide a quick overview of the patient’s medical history and his or her (or their) pre-existing medical conditions as well as any pertinent past surgical history, family history, and medication history. In our case, our patient’s family history was uncommonly absent from his/her/their chart and none of the notes, from either nurses or physicians, could clarify whether our patient was genetically male or female let alone if he or she had undergone any hormone replacement therapy.

Importantly, when examining a patient with abdominal pain it is crucial to read through the patient’s chart prior to the visit to see if he or she has any family history of inflammatory bowel disease or, even more seriously, colorectal cancer. MDs also scan for any medication taken by the patient that may cause abdominal bleeding, if he/she/they have ever undergone a colonoscopy, or if he/she/they have been the subject of any form of abdominal surgery in the past.


So we were about to walk into the patient’s room empty-handed. Ridiculously, it might have been better if we hadn’t even reviewed the parient’s chart ahead of time—a thought that very rarely occurs among MDs. A patient’s chart is usually majorly helpful in assessing the situation before the patient interview in order to zero in on the most likely cause of the patient’s condition, to provide the best services possible in the shortest amount of time.


We pulled back the easter-egg blue curtain and introduced ourselves. My resident was the night-shift surgeon and I was the third-year medical student that would be in the room as well during the encounter if it was okay with the patient. The patient smiled and said it was fine. In the rush to get to the ER, she looked tired, disheveled, and kept adjusting her wig with a hint of embarrassment and a troubling sense of anxiety: anxiety about her appearance and I think nervousness at how she might be treated by us as a result.


My resident’s anodyne demeanor and tone eased the patient’s tension and it was palpable. I watched my resident with both admiration and sincere deference. I had always looked up to this resident–she was one of my favorites–but it was this encounter alone that made me, almost, idolize her for her compassionate approach to an otherwise anxiety-provoking situation, for both us and the patient. She did what all MDs should do; she smiled and made eye-contact with the patient–not in some forced way but in true sincerity, seating herself down next to the patient’s bed so her eyes were level with those of our nervous patient’s, which kept shifting from the floor back up to her face with hesitation. My resident leaned in and this seemed to focus the patient’s sad eyes on her face. “What was going on?” my resident asked her. What brought her in tonight?

Her eyes focused on the floor below the examination table: Every now and then a severe stabbing pain would awaken her at night and she’d be forced to take the jolting bus to the ER, bearing the cold frost of Cincinnati winters, which, understandably, only exacerbated the already unbearable collywobbles, to sit for hours in horrible discomfort in the bright glaring lights of the ER waiting room. Our patient explained that she didn’t have much money and didn’t own a car. She couldn’t remember the last time she had seen a physician outside of the ER because she was uninsured and couldn’t afford the visits. Her eyes shifted around the room as she spoke of the diarrhea she would experience after the onset of the pain. And of course this made the journey on public transport even worse. My resident nodded with a look in her eyes of genuine empathy. Did she have any other chronic medical issues? Had the cause of the pain ever been diagnosed by anyone before? No. They could never figure out what was wrong. They kept suggesting a colonoscopy but she had never been able to successfully follow through with any scheduled procedure since any colonoscopy performed at any hospital requires a chaperone–to drop you off and return to pick you up once the ordeal was finally over. And she didn’t have any family or close friends with a car who she could ask. The hospital wouldn’t allow her to take a bus or cab. What was she to do? My resident nodded in genuine understanding, saying, without words, that these policies made it difficult for many to receive these important screening procedures.


Next my resident wanted to know, what was her past medical history? Had she ever been diagnosed with a chronic illness?

And at this juncture in the conversation the words which had finally begun to flow freely ebbed and became more forced and uncomfortable.


It was clear to us from our initial step into the small, fusty ER room–barred from the main lobby by a flimsy curtain, loud from the hustle and bustle of ER doctors moving from room to room outside and the sound of medical machines working fastidiously in rooms adjacent to ours–that the patient had been born “male, XY,” many years ago and was, probably for years, trying to transition to “female, XX”. It was clear since pulling the curtain back and introducing ourselves that this was the cause of all the discrepancies on the electronic records we had studied before meeting the patient ourselves. It was clear when the conversation took the turn towards her past medical history that she had most likely experienced negative reactions from her past treating MDs and she was reluctant to open this door, which might morph into a floodgate spilling in waves of additional pain for her yet again.

So my resident continued with caution and care. Her posture, facial expressions, and active listening alone were anodyne nonverbal reassurances. Our guarded patient eased up a bit. Slowly we were able to extract some information about her medical and family history that proved to be hugely significant.


Thus far we had gathered that she was a 54 year old Caucasian “male,” that is born with one X chromosome and one Y, who was in the process of transitioning to female, that is what her notion of female is, with a past medical history of abdominal pain and a family history significant for colorectal cancer. Her father had recently passed away from colorectal cancer and her younger brother had recently been diagnosed with the same terminal disease. Of note, the patient had never received a colonoscopy or rectal exam in the past due to her financial situation which had made access to medical care difficult. She had not yet began hormone replacement therapy.


What was difficult to explain next was that although the patient identified as female, the fact that she was born male with those XY chromosomes predisposed her to colorectal cancer. Men are more likely to develop colorectal cancer than females. Hence, men are medically directed to undergo colonoscopies every 10 years beginning at age 50 but even earlier, at age 40, if they have a family history of colorectal cancer.


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It was likely an amalgamation of varying factors that predisposed this particular patient to developing colorectal cancer: she was over 50, she had a family history of colorectal cancer, she had never undergone any type of screening for colorectal cancer, and she had limited access to healthcare and medical services. But, importantly, these predisposing factors were further compounded by the fact that she was born male, was transitioning to female, did not know that being born male—whether she identified as one or not—made her much more likely to develop colorectal cancer, and the overarching realization that the MDs who had seen her in the past were too uncomfortable to broach this topic with her was evidenced by the discrepancies permeating the medical notes regarding her past care that had initially confused us. While those notes may not have been intentionally captious they befuddled a medical record that could have otherwise been straightforward and efficiently thorough.


I sympathized with this patient because I can imagine that, throughout every medical encounter she had experienced, she was reminded that she was born male. Since I have not experienced this disillusionment with my own self myself—in this same regard—I can only surmise that it made her even more reluctant to seek medical care.

All physicians should be not only willing but eager to engage transgender patients in discussions like those we had with this patient that night. It saddened me that, since we were called from the surgery department for a mere consultation, there would be no follow-up with this patient from our end. The resident I was with so empathetically connected with this patient that I hoped this patient would find a similar physician, family practice or internal medicine who she could see regularly, who would be able to follow-up with her and track her medical care. Who would listen and would try to imagine the difficulties she has faced in tackling this unavoidable conflict between her XY chromosomes and the gender she internally identified with.


But just as it is important for physicians to understand patients from their perspective, from their life experiences, and from their internal struggles, I must emphasize that it is equally important for patients to do the same. I hope soon that the stigma surrounding transgender issues dissipates. I think when it does, transgender individuals will be more accepting of the fact that even though their genetics have dictated their medical, anatomical development, these chromosomes do not need to dictate their identity or life choices. They can accept that they are an XY or XX individual but happen to be female or male in their daily lives, respectively.

I think this acceptance is important for both physicians and patients. Because avoidance of these talks, either because the physician is too uncomfortable to touch on these topics or because the patient fears judgment, only hinders the best possible, effective and efficient medical care for them.


If the execrable medical charts had been instead clear that this was a genetic male who transitioned to female, if the patient had been aware of these risk factors and accepted those XY chromosomes as part of their identity—not their gender identity but their genetic makeup, if her past physicians had explained these risk factors to her, the two hours it spent my resident and I would have been used instead to tackle the most concerning medical issue for this patient–one that might have threatened her life. We would have been able to openly discuss the next steps with total acceptance and understanding. Instead, previous MDs who had seen her had taken a crabwise approach to discussing her transgender status and this only put this patient at an even further disadvantage than she already was medically speaking.

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Since this experience, I’ve thought about how this might be avoided in the future. The stigma will not disappear overnight but what can the medical community do to speed up this process? At least as far as optimal medical care is concerned.

Perhaps instead of listing a patient in medical charts as:

Joffrey Baratheon, DOB: 1/1/1000, XY

EMRs can instead make a minor adjustment to inform physicians of both the patient’s medical and emotional state at the time of treatment:

Why not:

Joffrey/Jessica Baratheon, DOB: 1/1/1000, XY/FEMALE

The first two letters identifying the patient’s genetic chromosomes—chromosomes that can never be modified regardless of hormone replacement therapy. Chromosomes which should be embraced by patients and physicians alike as part of one’s identity—part being the operative word. These chromosomes don’t define the individual. But they are part of any human being as much as the heart or brain is. XY or XX doesn’t make one “male” or “female.” It merely denotes which specific hormones affect one’s development.

In contrast, the designation “male” or “female” following the slash could symbolize an individual’s “true” identity, that is the gender they personally identify with the most. XY/female will denote to a physician that this patient born with one X chromosome and one Y chromosome has developed with a higher level of testosterone, among other hormones, regulating much of their growth for a significant amount of his or her life, much more so than those born with two X’s and no Y.


For nonbinary patienrs my suggestion is to use the letter Z. A patient with an EMR that displays XYZ will denote that the patient was born with one X chromosome and one Y chromosome. But Z is the non binary identify they feel closest to–neither male nor female. XYZ: someone born “male”–a societal label–but who identifies as neither gender. XXZ: someone born female but who, again, identifies as neither female nor male.


It is important for individuals to embrace their genes without shame. Two X chromosomes or one X and one Y chromosome doesn’t define one as male or female. XX is NOT equivalent to societal notions of females nor does XY specify what we interpret as male. The existence of these chromosomes and the idea of gender identity are incommensurable. XY or XX does not make one “male” or “female” in the conventional societal notions of the words; how one chooses to identify is his or her or their sole choice to make. No chromosome defines the sense of gender.

GENDER IS AND SHOULD BE SEPARATED FROM SEX. BOTH PATIENTS AND PHYSICIANS SHOULD ACKNOWLEDGE THIS DIFFERENCE.


Nevertheless, it is important to embrace these chromosomes as part of one’s identity–not necessarily gender identity but genetic identity because these chromosomes are and will forever be a part of any individual’s medical fingerprint. And for physicians, this relabeling of a significant “identifier” in medical records will only lead to broader understanding and expanded acceptance of individuals and thereby patients. Because EMRs can and should change how they “identify” patients. The more prevalent this becomes the less frequent it will become for an intern to page a senior resident laughing about a confusing medical chart; because it wasn’t the medical chart he was laughing at, it was the patient. By expanding how we “identify” patients in a medical chart we are improving medical care for transgender individuals. These individuals struggle with explaining their identity to others on a daily basis that a device as simple as an electronic medical chart does not need to make his or her or their process of gender-identification even more challenging for these individuals–by doing this we are constructing further obstacles for transgender patients instead of abolishing them.

By misidentifying patients on medical records, physicians are in fact exercising calumny in its highest degree. The burden of guilt for not undergoing a routine screening such as a colonoscopy then falls on the patient when in actuality the burden should fall on physicians who fail to explain the role hormones associated with these chromosomes play during development, who fail to adequately demonstrate the difference between genetic blueprints and gender identity, and who hide within their own zone of comfort because of societal stigma they vowed to disregard when taking an Oath upon entering medical school, an Oath to help others to the best of their ability achieve a life of health regardless of a patient’s “societal status.”


Whether one is born or identifies as XX, XY, XX/male, XY/female, XXZ, or XYZ all individuals are both similar and unique. We all have risk factors that when collated make us unlike any other human being alive. The snowflake cliche is overused but perhaps it is relevant here. We are all different. Let’s acccept our differences while also embracing them. This is what medicine has always been about: seeing the similarities but also the differences and using knowledge to tailor treatment so each patient has as best of an equal chance at a healthy life as possible. That is the duty of physicians and it is also our duty as humans to acknowledge and accept ourselves and others while not only accepting our differences but openly and freely embracing them.

Another addition to the “snapshot” demographic information listed at the top left corner of Epic medical charts should be “he,” “she,” or “they”–the pronouns by which the patient prefers to be identified.


An article published by the Journal of the American Medical Informatics Association (JAIMA) includes the following:

Transgender patients have particular needs with respect to demographic information and health records; specifically, transgender patients may have a chosen name and gender identity that differs from their current legally designated name and sex. Additionally, sex-specific health information, for example, a man with a cervix or a woman with a prostate, requires special attention in electronic health record (EHR) systems. The World Professional Association for Transgender Health (WPATH) is an international multidisciplinary professional association that publishes recognized standards for the care of transgender and gender variant persons.

Transgender people experience their gender identity as different from the sex which was assigned to them at birth. They may seek medical care such as hormone therapy or surgery to effect changes in their secondary sex characteristics toward those of the gender with which they identify, as part of a process referred to as gender transition. It should be noted that the terms ‘sex’ and ‘gender,’ while often used interchangeably, have specific medical and psychological meanings that may differ from general social—or even legal—usage. ‘Sex’ commonly refers to one’s physical sex characteristics (eg, facial hair, body fat distribution, breasts), whereas ‘gender’ represents one’s identity and self-image. ‘Gender transition’ can be thought of as the process through which one aligns one’s physical sex (through hormones, surgery, etc) with one’s gender identity, keeping in mind that not all transgender people will seek a medical transition but may simply focus on a social one; for any given individual, transition may or may not have a specific ‘end point’ and may represent a continued state of flux and exploration that varies by the individual.


From the same article:

In addition to concerns about demographic information such as listed versus preferred name, gender, and pronouns, providers require a means to maintain an accurate record of what organs a patient may or may not have; this record cannot be limited or defined by the patient’s assigned or apparent sex/gender as entered into the EHR. For example, a patient may have been assigned female at birth, and have transitioned to male through the use of testosterone and surgical removal of the breasts; they may also have obtained a court ordered name and sex or gender change and are registered in the EHR system under a male name and gender. However, since this patient still has a cervix, ovaries, and uterus, health care providers will require the ability to enter pelvic exam findings and gynecologic review of systems, and to order a cervical pap smear within the EHR system. EHR products that restrict or pre-populate an individual encounter with sex-specific history, exam, or ordering templates will prevent this patient’s provider from accurately and efficiently documenting their care.

As another example, a patient may have been assigned male at birth and have transitioned to female through the use of estrogen; however, this patient has not yet changed her government-issued identity documents and is currently listed with a male name and sex or gender. The patient has an outwardly female appearance and wishes to be referred to using a feminine name and pronouns. The patient also has breasts as a result of their hormone treatment and will require a breast examination and ordering of a mammogram. An EHR system should guide the administrative and clinical staff to use the patient’s chosen name and pronoun, which should serve to improve patient engagement and comfort while improving retention in care. An EHR system should also allow the provider to document a breast examination and order a mammogram—even though the patient remains registered as male.

The article concludes with several recommendations:

  1. It is recognized that the overwhelming majority of patients are not transgender, which has led to implementation of a binary male/female oriented system across multiple platforms such as EHR systems, billing and coding systems, and laboratory systems; however, this structure inhibits the collection of accurate medical information, and therefore such systems should be modified.
  2. Preferred name, gender identity, and pronoun preference, as identified by patients, should be included as demographic variables (such as with ethnicity). These would be captured in readily amendable, optional fields that are separate from the patient’s state-listed name and sex or gender designation, which may continue to be used for billing purposes in circumstances when the patient has not yet obtained legal change of name and/or sex or gender designation. Note that some patients may identify as ‘genderqueer’ and prefer the use of neither pronoun. While lists of current common gender identities, sex options (Table 2), and pronoun options (Box 1) are provided, ideally field parameters would be easily amended to reflect changing paradigms and social trends within transgender communities.
  3. Provide a means to maintain an inventory of a patient’s medical transition history and current anatomy. An anatomical inventory would allow providers to record into the chart (and/or update as needed) the organs each individual patient has at any given point in time; this inventory would then drive any individualized auto-population of history and physical exam templates. This inventory should be uncoupled from the patient’s recorded gender identity, assigned sex, or preferred pronouns. A list of recommended organs for inventory in transgender patients appears in Box 2, and commonly sought treatments and procedures which may not be listed in current systems but should be included as selectable items in the medical or surgical history, appear in Box 3. The following non-exhaustive list of procedures are not transgender-specific procedures and are omitted from Box 3 as they are already listed in existing systems: hysterectomy, oophorectomy, vaginectomy, orchiectomy, breast augmentation. These procedures, however, also should also be un-coupled from any gender-coded template so that an individual coded as male who has had a hysterectomy, for example, could have that history documented. In addition, sex-specific organ procedures and diagnoses relating to these organs should be un-coupled, so that (as an example) a prostatic ultrasound may be ordered on a patient registered as female, or a cervical pap smear ordered on a patient registered as male. Such practices would allow enhanced decision support for transgender-specific care, such as medication interactions, organ- and sex-specific preventive health alerts, or accommodations for sex-specific laboratory normal value ranges. For example, a patient with a female birth sex and male gender identity, currently registered as a female, who is taking testosterone, may have a hemoglobin of 17 g/dl flagged as ‘high’ by the interfacing laboratory system. A local flag driven by the patient’s birth sex, gender identity, and current testosterone prescription could alert clinicians to reconsider this ‘high’ flag and review laboratory male reference ranges.
  4. The system should allow a smooth transition from one listed name, anatomical inventory, and/or sex to another, without affecting the integrity of the remainder of the patient’s record. It should be noted that, in some cases, changes in name and sex or gender designation of record will come at different times, and that in some jurisdictions official recognition of a change of sex or gender designation is not possible.
  5. A system should exist to notify providers and clinic staff of a patient’s preferred name and/or pronoun (if either or both of these differ from the current legal documented name/sex). Systems should include an easily recognized notification or alert flag which appears at a time most consistent with the end-user’s workflow (figure 1).

JAIMA concludes in its article that:

As the care of transgender patients moves into the mainstream, the medical informatics field will be asked to respond to the unique needs of this demographic through the implementation of more accurate and appropriate data collection methods in a range of products and systems. It is hoped that these user-driven recommendations will better inform health information technology research and EHR vendors on the specific needs of transgender patients in this context. Future research should aim to explore current practices among both clinicians and vendors; ultimately this information would be used to drive developer implementation of feasible models which satisfy the recommendations presented here.

See the link at the bottom of this post for the entire article.


Let’s do away with desultory patient identifiers in favor of one’s that live up to modern-day expectations and realities. Peremptory rejection of improving EMRs will be disastrous. Physicians should take the first step ex cathedra in promoting the rights of transgender individuals, including equal access to optimal medical services and education. MDs should be societal leaders and the fact that EMRs still display such glaring discrepancies is incontrovertible evidence that physicians, in regards to transgender rights, are falling behind their responsibilities. Physicians should be the penultimate examples of meliorism.

XX/XY, XY/XX, XYZ. These are the retronyms we should be adopting as we advance towards an all inclusive society and medical system. We all know the alphabet by now. Let’s all begin to sing along together—in harmony.


Electronic Medical Records and the Transgender Patient: Recommendations From the World Professional Association for Transgender Health EMR Working Group

DEMENTIA VERSUS ALZHEIMERS: A POST TO REMEMBER 

“YOU DON’T STOP LAUGHING BECAUSE YOU GROW OLD, YOU GROW OLD BECAUSE YOU STOP LAUGHING”

My grandfather used to have a crude, erring on vulgar, blunt, but charming sense of humor. The stiff and frigid demeanor football fans remember him for, from the 1970’s-1990’s on the sidelines as an NFL head coach, as he scrutinized without expression his football players from kickoff to the last seconds of the fourth quarter, with his arms crossed tightly across his chest, while viciously chewing a piece of gum, his stark blue eyes sharply focused only on the field, shadowed by an intimidating set of eyebrows, stands in stark contrast to his tone at home. During the game he masked his thoughts with an unfaltering pokerface; he never let a quick smirk slip across his face or his posture slump. He wanted to be seen as the tough, takes no shit from anyone, head coach and his portrayal of this during games was impeccable. Never a chuckle or smile–he was definitely not a Pete Carroll. But in locker rooms, at the parties after the games, with colleagues, and even with his own football players (to a degree) he was personable and charismatic. “Chuck Knox was the best coach I ever had,” said one of his former Rams players, Tom Mack, a Hall of Famer.  “He always took the time to know each player well enough that he could talk to each player and hit their hot buttons. I never saw another coach like that.” So, while in the locker room, he was tough but loved, during games the fans mostly saw an austere coach with meticulous focus and dedicated persistence.



But at home he wasn’t that tough, intimidating coach. He was Pop-Pop, full of sharp dad jokes and witty cliches–not the Knoxisms he was known for but punny humor that would make us roll our eyes. He was always trying to make us laugh. And even if we didn’t, he would. He’d always chuckle after delivering a line and was always trying to be the funny Pop-Pop for my sister and I–embarassing us whenever there was an opportunity to do so. Not the Chuck Knox who, with 8 simple words, admonished 300 pound 6-foot tall Cortez Kennedy to get out of his office when the Tez mouthed back one day: “Get out of my office right now Cortez,” as quoted by Kennedy himself during his induction into Pro Football’s Hall of Fame.

No we didn’t see that growing up. I grew up with the Chuck Knox who was my Pop Pop that took me for golf cart rides and would surprise us by stepping on the cart’s horn button, located on the floor next to the brake pedal unbeknownst to us, “beep beep” causing us to shriek “where’d that come from Pop-Pop?” He’d just chuckle. Or musically reciting “open sesame” in a mysterious tone when we got to the gate that led to my grandparents’ home, and magically the gate would open. Our mouths would be open: “Pop Pop how did you do that?” “Magic,” he’d chuckle. The remote to the gate, I later learned, would be tucked out-of-sight in his pant pocket. But in high school I became that socially anxious teen and would duck below the windows when he came to pick me up in his tan Cadillac; I didn’t want any classmates seeing me in this horrible vehicular choice. It just screamed elderly uncoolness, even though looking back I’m sure many dads or football fans would have proudly ridden front seat of that car.



My grandpa’s chuckle–one that is so recognizable it should be called the “Chuck”-le–used to resonate from deep within his chest and was a perfect rendition of the ubiquitous “he he” texts we now send. He was always “Chuck”-ling. But he doesn’t anymore.

Read on to learn about various forms of dementia, and the type my grandfather has, or skip ahead if uninterested in the details of dementia’s wide-ranging presentations.


Dementia is not the equivalent of Alzheimer’s. Just as a square is a type of rectangle but a rectangle is not a square, Alzheimer’s Disease is a form of dementia but dementia is not necessarily Alzheimer’s.

And this is the case in a significant amount of patients to warrant discussion. Most MDs, from my experience, are too exhausted, too sleep-deprived and time-constrained, to explain the varied presentations of dementia. After all, they only have, on average, 30-45 minutes to review a patient’s chart, enter that staged examination room, and jump straight to the point: discuss any new symptoms, review the patients meds, prescribe any new meds, word the pros and cons of each pill in a way the patient (or his/her caregiver) understands, write the script, schedule a follow-up, followed by 15 minutes of hastily summarizing the visit in the electronic medical record system, the notes of which are always subject to higher review. There’s not much time for chit-chat let alone medical lessons.


So here’s what you should know about dementia: it’s widely diverse manifestations and underlying pathologies. Don’t worry, I’ll leave out as much medical jargon as possible.

First, let’s review what we know to date about the brain and it’s basic machinery. The brain can be broken up into specific areas and each area serves a distinct purpose. Nevertheless, while the parts of a car can be separated, a motor vehicle cannot function if one piece of machinery is missing, or if the wires have been cut. Because the car won’t be able to start unless its parts communicate with each other, through these wires, to allow for the engine to start, the radio to blast, and the brakes to halt the car’s forward momentum if a threat appears. The brain operates similarly. It’s a team effort that enables us to remember the names of our closest friends, what time we need to make that appointment, and recognize the feeling of fear when walking alone at night and faint footsteps, close behind us, trail our path. Collaboration is key to any meaningful bodily or cognitive action and impulse. And just like a car, while communication is key, each piece of machinery serves an essential purpose. The brain, composed of disparate lobes and structures, is constructed similarly. While car parts can be stolen and sold, they won’t be valuable unless wired into a car complete with all the remaining parts. So, fundamentally, the brain is useless when a lobe is damaged or its wiring is cut. The brain must be complete with all functioning lobes and structures wired together to form a circuit in order for the brain to be whole, capable of effective execution of purposeful action.


Wiring together the individual sections of the brain during infantile and adolescent growth is crucial to producing efficient and effective actions, decisions, thoughts, and, ultimately, a useful human being able to function properly–eat, laugh, socialize, correctly interpret the intent of others’ words or the subliminal message conveyed through facial expressions, develop relationships, reproduce, parent, cope with life’s ups and its downs, grieve, deny, challenge, accept, and prepare for our own disappearance from the world our brains built.

An abnormality in one area of the brain has a limited impact on one of these abilities–including speech and memory–specific to its assigned role in the circuitry that affords the brain as the body’s most powerful organ.


The lobes of the brain:

  • Frontal: thinking, memory, behavior, personality, decision-making, movement
  • Temporal: hearing, learning, emotions
  • Parietal: language and touch
  • Occipital: eyesight
lobes

Two anatomically and structurally separate formations that are critical to brain function are the brain stem and the cerebellum. You can think of these structures as similar to the pit of a peach: the peach is anatomically partitioned into pit and the pulp. And the pit can easily be removed before consumption. So we have other structures aide the brain in functioning prosperously:

  • Brain stem: breathing, heart rate, temperature
  • Cerebellum: balance and coordination

In the temporal areas of the brain reside the amygdala and hippocampus, cognitive “organs” that are embedded within the brain:

  • The Amygdala: nuclei within the temporal lobes important for memory, decision-making, and emotional reactions as part of the limbic system (don’t worry about this medical term–just remember that it’s our brain’s emotional wiring system.)
  • The hippocampus: located in the temporal lobes, functions within the limbic system, and is important for short-term and long-term memory (in Alzheimer’s Disease the hippocampus is the first area of the brain to suffer damage.)

OK so now–before I forget—back to dementia:

Alzheimer’s Disease

Most common type of dementia; accounts for an estimated 60 to 80 percent of cases.

Symptoms: Difficulty remembering recent conversations, names or events is often an early clinical symptom; apathy and depression are also often early symptoms. Later symptoms include impaired communication, poor judgment, disorientation, confusion, behavior changes and difficulty speaking, swallowing and walking.

Brain changes: Hallmark abnormalities are deposits of the protein fragment beta-amyloid (plaques) and twisted strands of the protein tau (tangles) as well as evidence of nerve cell damage and death in the brain

Vascular Dementia

Previously known as multi-infarct or post-stroke dementia, vascular dementia is less common as a sole cause of dementia than Alzheimer’s, accounting for about 10 percent of dementia cases.

Symptoms: Impaired judgment or ability to make decisions, plan or organize is more likely to be the initial symptom, as opposed to the memory loss often associated with the initial symptoms of Alzheimer’s. Occurs from blood vessel blockage or damage leading to infarcts (strokes) or bleeding in the brain. The location, number and size of the brain injury determines how the individual’s thinking and physical functioning are affected.

Brain changes: Brain imaging can often detect blood vessel problems implicated in vascular dementia. In the past, evidence for vascular dementia was used to exclude a diagnosis of Alzheimer’s disease (and vice versa). That practice is no longer considered consistent with pathologic evidence, which shows that the brain changes of several types of dementia can be present simultaneously. When any two or more types of dementia are present at the same time, the individual is considered to have mixed dementia.

Dementia with Lewy Bodies

Symptoms: People with dementia with Lewy bodies often have memory loss and thinking problems common in Alzheimer’s, but are more likely than people with Alzheimer’s to have initial or early symptoms such as sleep disturbances, well-formed visual hallucinations, and slowness, gait imbalance or other parkinsonian movement features.

Brain changes: Lewy bodies are abnormal aggregations (or clumps) of the protein alpha-synuclein. When they develop in a part of the brain called the cortex, dementia can result. Alpha-synuclein also aggregates in the brains of people with Parkinson’s disease, but the aggregates may appear in a pattern that is different from dementia with Lewy bodies.

The brain changes of dementia with Lewy bodies alone can cause dementia, or they can be present at the same time as the brain changes of Alzheimer’s disease and/or vascular dementia, with each abnormality contributing to the development of dementia. When this happens, the individual is said to have mixed dementia.

Frontotemporal Dementia

Includes dementias such as behavioral variant FTD (bvFTD), primary progressive aphasia, Pick’s disease, corticobasal degeneration and progressive supranuclear palsy.

Symptoms: Typical symptoms include changes in personality and behavior and difficulty with language. Nerve cells in the front and side regions of the brain are especially affected.

Brain changes: No distinguishing microscopic abnormality is linked to all cases. People with FTD generally develop symptoms at a younger age (at about age 60) and survive for fewer years than those with Alzheimer’s.

Briefly, for completeness, Parkinson’s Disease produces dementia symptomatically similar to Lewy Body Dementia. There are several other lesser-known types of dementia: Huntington’s Disease, Wernicke-Korsakoff Syndrome (the most interesting, in my opinion,) and Creutzfeldt-Jakob disease among others.


So patients with Lewy Body Dementia behave differently than patients with Alzheimer’s disease but similarly to those with Parkinson’s disease and it’s all explained by the underlying damage to the brain. Lumping all memory-deficit diseases together into a single category of “dementia” or assuming all patients with dementia have Alzheimer’s is hugely errant and detrimental to both patients and their caregivers since each type must be managed markedly differently. Further, caregivers should know which type of dementia their loved one or patient has in order to know what to expect.


I am the product of two very dissimilar families: football/sports and the highest level of education, consisting of doctors and lawyers. So, for a long time the Knox family, my mom’s side of the family who has no medical education, ignored the progressive decline in my grandather’s mental state–they wrote it off as simply age-related forgetfulness. Until he left $1000 in cash on the table of an NFL monthly alumni event and a month or so later crashed that beige Cadillac into another car while making a simple left turn at a minor four-way intersection. That’s when they started to listen to my father’s medical remarks and opinion.


My father, a family practice physician, has witnessed my grandfather’s mental decline from afar, as my parents divorced when I was 13 and my grandfather’s mental disabilities didn’t manifest until I was 16 or 17 years old. It wasn’t until my Pop-Pop made that error in judgment to turn left into oncoming traffic in his Cadillac that my grandmother took action, permanently revoking his access to the car keys. He still could drive the golf cart though, she gave him that–he didn’t have dementia, she said, it was just “age.” Even at 16 I didn’t agree with her “diagnosis.” I argued repeatedly with her: “he needs to see a doctor Mimi. He might have Alzheimer’s”; I didn’t know at that age the fundamental take-home message of this post that dementia is not necessarily always Alzheimer’s. Regardless, I printed off articles and pages describing support groups and handed them to my Mimi to read but she disregarded them and they ended up in the trash, literally. I think, in hindsight, she was going through the stages of grief as his wife. First, denial. Second, Anger. Third, bargaining. That’s what stage she was at: he couldn’t drive the Cadillac but he could drive the golf cart, he couldn’t drink hard liquor anymore but he could sip wine. She even thought he could still dress himself until it took increasingly longer for him to do so with one memorable occasion being his choice to wear his old Rams tracksuit to dinner at the Country Club, complete with the matching hat. “Chuck! You can’t wear that to the Club! Go back in and put on your Tommy Bahama shirt.” I couldn’t decide if it was total obliviousness or denial.


Then it got worse. And, since I lived with them, I saw the step-wise decline in his memory, speech, personal care, and what MDs call “ADLs” or Activities of Daily Living firsthand. First he couldn’t brush his teeth or shave. Then he couldn’t dress himself. Then he couldn’t use the bathroom by himself. That “Chuck”-le slowly dissipated. Then it was gone.


Finally a research group from UCLA made the trip to La Quinta and delivered their preliminary diagnosis of Lewy Body Dementia. So after years, my grandma’s denial, anger, and bargaining finally shifted. To acceptance.


Before I even enrolled in med school, I educated myself about Lewy Body Dementia. Those shuffling footsteps we used to joke about, “Well, here comes Pop-Pop,” got louder and that suddenly made sense. His gradual stooping posture, no longer that stiff board stance seen on sidelines, made sense. But it was his night terrors that, for me, incited anger in me, directed at my Mimi for not doing something sooner.

Recurrent nightmares, something that had always interrupted his sleep, became much more severe and frequent. I was often awoken in the middle of the night by my grandmother to help her calm my grandfather down as he unconsciously stood next to their bed, his arms raised, fists clenched–he would be reliving a fight from back when he was a teen in Sewickley, Pennsylvania with an abusive alcoholic father to drag home from bars when his mother ordered him to do so. They had no windows in their home they were so poor. No phone. Linoleum floors. And a rough neighborhood where you had to learn to be street-smart and tough to survive until you turned 18 and could finally work in the steel mills or join the army (my grandfather tried when he was 15 but they discovered his age and turned him away.)

The night terrors got worse. My Pop-Pop who used to take me for date shakes and golf cart rides and say to me “if you ever need anything who do you call?” “Pop-Pop” was suffering. And there was nothing I could do but dodge his asleep punches, make sure he didn’t fall–which he often did–and hit his head, and try to get him back to bed, reminding him that he wasn’t in Sewickley anymore. He was in a million dollar house he earned from years of hard work, and he was safe. But it took a lot of convincing and sometimes lasted hours, at 3 or 4 in the morning.


My grandma is a humble, modest, and strong woman. But eventually it was too much for her to handle alone with only help from my sister and I. So, the house my grandfather had built as a final demonstration, mostly to himself, that he had “made it,” a place to retire and live out the rest of his years in peace was sold and they moved; I don’t think his weakened brain was even able to process the transition. A multi-million dollar house, built on two lots and custom-designed and constructed, was traded in for a one-bedroom cottage in Anaheim.


My grandfather used to shoulder all familial responsibilities, which ranged from financial duties to making sure all of us in the family were thriving in our lives, fell to my grandmother who initially didn’t know anything about how to manage these newfound responsibilities. I think she was shocked then confused then overwhelmed–but she never showed it, out of shame would be my best guess since she has never complained and rarely have I seen her cry.

She still hides her emotions from everyone including me and purposefully conceals aspect of my grandfathers’s decline from anyone outside of our family and close-knit circle of friends. In fact, she’d be horrified if she knew I had written this post, especially online. But I don’t blame her. She grew up in a time when mental illness was always hidden and protected privately. At 83 I don’t expect her to suddenly develop the awareness that times have changed. That not only is dementia but mental illness overall is also frequently openly discussed and accepted.


So she continues to “protect” him from what she fears might be “judgment”; she says she wants everyone to remember him for how he used to be and not think of the state he is in now once he is gone. This weight of shielding him away from the public has taken its toll on her. She doesn’t laugh much anymore and my grandfather can now only speak a few sentences at a time–and that’s on good days. She still refuses to embrace the notion that he won’t be remembered for having dementia; even if everyone knew he would still be remembered for being a fucking talented NFL head coach who set records and might even make induction into that Hall in Canton one day.


But I wish she would acknowledge that times have changed and that the vast majority of people–fans, old acquaintances, former staff members–would be accepting of who he is now. They wouldn’t expect that same charismatic sociable Chuck Knox of the 1970’s. It’s ok for him to be around fans; that won’t change how they’ll remember him. Not only would allowing him to leave their gated community every once in a while, under the supervision of his caregivers, or attend an LA Rams game help stimulate his now mostly vacant mind but it would also help others struggling in similar situations with ill family members or friends. But she won’t and I don’t think ever will.


Whenever I visit, his blue eyes regain focus. He always kisses me and he always grabs my hand before I walk away. And he always meticulously whispers, “I love you.” That’s what he says now when I leave. But I know he’s trying to say what he used to always say, “I love you more than anything–you know that.” He recalls, he just can’t remember. The words are there but jumbled and it’s too hard for him to make sense of the mess; like a game of Scramble, the words are there but need to be sorted and made sense of before expressed. I always know what he’s trying to say and my Mimi does too; he’s always trying to tell her how much he loves her.


But, “It’s just too hard,” she says at any suggestion of wheeling him to familiar places or events–like football games. Instead he spends his days in a comfortable chair, pouring confusedly at old pictures, his face un-purposefully expressionless, across from a TV broadcasting a football game.


The laughter is gone but he’s still here. It’s OK for people to know that dementia, in all forms, can impact anyone and their family–even ones who led incredibly public and colossal lives.


Dementia is no laughing matter. But those who are still living with it should not be buried just yet. For the brain and for those who suffer from dementia, isolation is essentially burial.


CTE? Check out my other blog post.

WALL STREET JOURNAL: MED SCHOOL BURNOUT 

PROGNOSES FOR BURNT-OUT MED STUDENTS AND THEIR PATIENTS

https://blogs.wsj.com/experts/2017/09/12/how-medical-schools-can-better-fight-burnout/

MED SCHOOL BURNOUT PRODUCES INEFFECTIVE UNENGAGED MEDICAL STUDENTS AND ULTIMATELY POOR MDS.

A problem that needs to be addressed and appropriately managed. Open discussion and encouragement of such discussion should be implemented by all medical schools.

Better mental health care for medical students, ditching the mental health stigma, and employment of mental health resources for medical students will lead to better prognoses for not only burgeoning physicians but for their patients.

MY MEDICAL SCHOOL INTERVIEWS

HOW BOB DYLAN HELPED ME GET INTO MED SCHOOL

Applying to medical school is a long, arduous, complicated, and expensive process. Throughout undergrad, I constantly analyzed every choice I made–what courses “look good” on those sheets of paper submitted to medical schools, what community service activities or leadership roles would the admissions committee “want to see” more than others. I did this too often. 

And I regret it. I regret not taking that journalism class or that anthropology elective. Or that sociology lecture or that political science group discussion. Or joining that art club or swim group. Or taking the time to rally with other students around a political issue or campaign for a non-medical-related cause. The list could make a book. If it didn’t link directly or somehow creatively indirectly with medicine I probably didn’t do it–but I should have. I locked myself into a medical crate and quasi-permanently chained myself to a professional pole, without even once remotely realizing I had limited myself in, what now seems, an irrevocable way.


I did deviate a few times; there were a couple instances in which I did leap over this subconsciously constructed mental gate, but these deviations were mostly during my Freshman and Sophomore years when I had that wiggle room and not that load that comes with the looming deadline to dominate the MCAT. I took a human rights class. I loved it so I took a legal studies class next. But there wasn’t–or didn’t seem to be–enough time to be a legal humanitarian and a pre-med student so that was the end of my short-lived legal career. I took a philosophy course and loved it–but the concept that the inanimate objects around us might not actually exist conflicted too much with the “facts” I was learning in Physics. So, again, at some non-existent academic fork in the road, I chose science once more. I did stick with French for a year–until the course requirements to major in molecular biology, and their available time slots, barred me from continuing the only 5 unit class on campus, since all foreign language classes required an hour-long commitment at the same time every Monday through Friday. Whenever I tried to “explore” other realms of thought there was an inherent conflict during enrollment that forced me to choose: science or these other electives that might not take me anywhere professionally.

Same went for volunteering or leadership positions. No medical school wanted to admit a politician or columnist, did they? Not unless the columnist zeroed in on discussions based only on current healthcare issues, I thought. So I chose science time and time again, although sometimes I decided to swim upstream toward something that interested me instead of leisurely floating downstream in a scientifically inflated raft.


I diverged from the “perfect medical school application” stream in one significant way. I tangentially decided to found and instruct an English Department-sponsored course on the music and lyrics of Bob Dylan and their influence on American history, society, and culture. But I didn’t decide to do this in some conscious rebellion against my predetermined professional fate to become a doctor. I did it because it confused and infuriated me that there was a class on the Beatles and Pink Floyd but not Bob Dylan–how fucking ridiculous. How could there not be a class on Bob Dylan at fucking UC Berkeley of all places? Brown had a class and so did Columbia. But not Berkeley? Well then I was going to start one.


So I spent an entire summer re-reading every Bob Dylan book I owned, every interview with Dylan since 1961, every article about him I could find. And eventually compiled a class reader–it was thick–and course curriculum that spanned Dylan’s 50 year career that continued to dominate any contemporary band’s weak attempts at music, in my opinion. It took me all fucking summer and swallowed up all the time I wasn’t spending trying to wrap my head around biochemistry; I had wanted to get that difficult biochem class out of the way since I had heard it was much easier to get an A in this challenging pre-med pre-req when burnt-out professors just didn’t give two shits in the summer.

The final stamp of approval, before I submitted my curriculum draft to the meticulous eyes of the English Department, had to come from Greil Marcus. Per Wikipedia, “Greil Marcus (born June 19, 1945) is an American author, music journalist and cultural critic. He is notable for producing scholarly and literary essays that place rock music in a broader framework of culture and politics than is customary in pop music journalism.” He was a professor at Berkeley at the time and is still the leading Bob Dylan expert in the country. He’s written two books on Dylan and has even presented an award to Dylan in person.HAD TO meet Marcus and I wanted his approval. So we met at Caffe Strada and he told me his story. Marcus was the first Records Editor at Rolling Stone Magazine. Jann Wenner–the founder of Rolling Stone Magazine–was Marcus’s best friend–still is–and roommate when they were both Berkeley students years back. He shared so many immersive stories, I never wanted to leave that table at Strada. He told me the trouble him and Jann used to get into at Berkeley. How after he gave Dylan an award, he asked if Dylan had read his biography on him, how Dylan had said he did but “he got a few things wrong and should write another one.” So Marcus did. And when he did he sent Dylan’s manager a note, asking for a quote from Bobby. He got a letter back from Dylan’s manager: “Bob doesn’t have anything to add. He said: ‘you know more about his life than he does.'” I couldn’t believe who I was sitting across from but in the end what mattered most was Marcus’s approval. And after two tense silent minutes of anxiously sipping coffee across from my one direct link to Dylan, while Greil read over my curriculum and flipped through my reader, He finally spoke. He smiled and chuckled. And nodded in agreement. “I think Dylan would approve.” That was good enough for me.

loved creating that class out of thin air. I had decided I would abide by Dylan’s own rules and respect his spiteful remarks over the course of five decades and center the class around individual interpretation rather than on trying to “pigeon-hole”–in Dylan’s words–Dylan and his impact on music and society at large. Fortunately for me, Greil and the English Department agreed with my thoughts. And a Berkeley English professor who typically lectured on American literary culture decided to sponsor my initiative. I recruited my friend Natasha to help in the course’s actual execution and while we knew the class would be popular we didn’t anticipate how many other students wanted a class on Bob Dylan as well.

Initially, we had pitched the class to the English Department as a 2-unit upper division course with around 75 students enrolled. Instead, over 100 signed up and we thought “what the hell” and capped the class at 110 students. So 110 students showed up to an auditorium in the School of Journalism building once a week for 4 hours. It was awesome. After one particularly loud lecture, a professor at the School of Journalism actually burst in and threw a tantrum, threatening to report us to the school. We won that argument and received a signed email of apology a week later.

We hosted guest speakers I didn’t even initially imagine we’d be able to enlist–including THE Ben Fong-Torres. That’s right. Ben Fong-Fucking-Torres. Same Ben Fong-Torres you might’ve seen portrayed in the film Almost Famous. “Hello, this is Ben Fong-Torres calling from Rolling Stone Magazine. Is this William Miller?” THE former fucking editor of Rolling Stone Magazine, editor of Rolling Stone when it was in its glory days of the late 1960’s and early 1970’s. THAT SAME BEN FONG-TORRES. I still have him saved as a contact in my phone–just in case. I’ve always been concerned that I might make the poor decision to dial him early one morning after too many vodka sodas and an intoxicated run-in with other Dylan enthusiasts at a bar. But I haven’t–yet at least.


It was a fantastic experience and I’ve never regretted it. When I applied to medical school I, of course, included it in my application under “Leadership Experience,” but I mostly wrote it off as just another piece of cotton in my application–something to fluff up the pillow a bit. A little “off topic” but “hmm..interesting. I don’t think we have another Bob Dylan enthusiast in our applicant pool,” I hoped one admissions committee member would think to themselves when perusing the final submission of my every decision over the course of 4 years.

But it ended up not being just a minor application plumper. It actually was the one thing every single medical school asked me during that significant final step in getting into an MD program: The Interview.

At all five institutions that invited me to fly to their school–on my dime by the way–to put the final stamp on that envelope and mail it in to receive my MD, asked me about this class I had started–why had I started it? Did I enjoy teaching it? When did I first start listening to Dylan? Wasn’t I a bit young to be a Dylan fan? The interview would suddenly take an informal and cheerful turn and there was often several moments of shared laughter and mutual agreement between the interviewer and myself. All of them, not surprisingly (you’d have to be a fucking idiot not to and what are the odds that a high-up member of the staff at a top medical school in the US was entirely intellectually limited) were Dylan fans.

It ended up not being just a talking point but a way for me to take off that constricting conservative blazer and for the interviewer to shed the formality of his or her white coat and for us to, metaphorically, share a joint while enjoying some Dylan music as two human beings with a shared interest. Suddenly the situation would turn from some aging MD asking me routine questions to me sitting with someone who I just realized was a Dylan fan too and discussing which Dylan song was our favorite, as if over glasses of beer at a dive bar. It provided much needed comedic relief to the coldness that had moments before held the conversation in an uncomfortably stiff grip.


I wish, not just for that reason, that I had deviated from that typical pre-med student path more often. I wish that I had taken more varied courses, in a broader range of Berkeley academic departments. Because now, when I’ve finally closed that door on being a “fucking doctor” instead of some “fucking writer,” as my father would say, most of my experiences have only been medical-related. I should have spent more time exploring the different paths that were so opportunistically right in front of my eyes. This is one of the unavoidable faults of medicine; we admit students who lack the varied experiences that are often so important in being able to relate to others–specifically patients. I was blinded by the idea of becoming an MD and I let it consume most of the best four years of my life. College is the best four years of anyone’s life and you should appreciate every second of it without blinders on.


But I did start that Bob Dylan class. And with that deviation and experience came some of the most awesome memories of my life thus far. I actually think I’m prouder of starting that class than I am of getting into medical school.


Strange, isn’t it? How some minor decision can alter life in such a major way and leave an impressive imprint on your future?

In the end, when you’re on your deathbed, will you remember the names of every MD who ever treated you? Who added those days to your life? Probably not. Instead, you’ll most likely revive the names of every friend who made each of those days worth it. Because, we’ll “meet them all again on the long journey to the middle.”


“I always tell the girls never take it seriously. If you never take it seriously, you never get hurt. If you never get hurt, you always have fun. And if you ever get lonely, you can just go to the record store and visit your friends.”

DIAGNOSING TRUMP

THE PROGNOSIS OF ARMCHAIR DIAGNOSES

Whether you’re a staunch Fox News viewer or you herald Rachel Maddox on MSNBC, I think most of us agree that Trump’s approach to serving as the leader of our country has been a unique one.

There are the twitter posts. There’s the way he says “China” like “vagina.” I think he needs a better way to self tan. And his rhetoric is definitely unprecedented.

Even if you voted for him, swallow your pride–it will go down–and come on…you know you agree there have been reasons to question his methods–whether you agree with them or not. He’s a unique guy. He’s different. For my Riverdale fans: he’s a weirdo. I think most leftists will definitely agree and I think the rational right side agrees as well. The issue is: does his administrative “uniqueness” pose a threat to our country? Or is it benefiting our society, our citizens, and our position in the world?

Here’s where the psychiatrists have come in to vocalize their opinions–whether we’ve asked them to or not. But is this appropriate? Does this violate medical ethics? Can you diagnose someone with a disorder who you’ve never even met let alone professionally examined in your HIPAA-protected office?


People love diagnosing other people. Whether or not they’ve got that MD. People don’t know what they don’t know. And it gets frustrating.

But people who know maybe too much–too much for one person–oftentimes put themselves above others; they think they have earned the responsibility to lead or must lead since they’ve been given the responsibility of an MD.

But MDs should know better than to hand out armchair diagnoses as easily as a Starbucks Frappuccino. And that’s exactly what a group of them did last week.


There’s something called “The Good Samaritan Law” in medicine. If you’re an MD and you’re on vacation in probably someplace like Maui sipping a Mai Tai and trying to correct your Vitamin D deficiency from the endless days stuck inside a sterile, emotionally vacant building. And a toddler, who can’t swim even though they very well could if taught, slips and falls into the pool–no one notices for several minutes until he’s rescued from the cement bottom of the deep end and laid onto the pool deck, as if it’s a stretcher, next to perfectly aligned lawn chairs, holding visitors bathing in the sun’s rays. And the brave soul who dove to rescue this toddler from the oxygen-deprived waters to bring him back into the molecularly perfectly balanced atmosphere that sustains human life, begins to panic when the boy lays lifeless like a deflated raft, without movement or breath. And the brave rescuer, after unsuccessful attempts to remember any CPR training–if they ever received any–fails to compress the chest hard enough–hard enough to break the tiny boy’s ribs–and administered breaths lacking the correct rhythm of compressions to mouth-to-mouth oxygen administration, one human to another. And finally screams for a doctor–or anyone with medical training–yelling “is there a doctor here? A nurse? We need help here!”


If you’re an MD you have two options: ignore or respond. If you do the first, and later without intention, someone discovers you do have an MD and you didn’t respond–either because you’re a shitty human or because you’re afraid because emergency medicine isn’t your specialty and you haven’t done CPR in years or you’re on vacation 4 drinks deep and can’t think straight–then you’re fucked. You could get called to the medial review board. Why didn’t you act. Why didn’t you practice that oath of beneficence (doesn’t matter if that toddler isn’t your patient.)

Or you can be the decent human being you are, not just the decent MD, and act–it can go good or bad but at least your intentions were to save a life.

This is the Good Samaritan Law: any MD can try to help any individual in distress and regardless of outcome is immune to malpractice suits–essentially. This applies to non-MDs as well–you’re legally protected too.


Good Samaritan laws offer legal protection to people who give reasonable assistance to those who are, or who they believe to be, injured, ill, in peril, or otherwise incapacitated.


So how does this apply to this post: diagnosing Trump. Do MDs have a duty to speak out, to help, when they feel someone is in peril or a risk to others? Or is it unprofessional to diagnose someone with a disorder who is not your patient?

A fine line indeed.


This past weekend in New York City, 125 mental health professionals marched on Broadway to demand that Trump be declared mentally unfit and removed from office.

The American Psychological Association code of ethics states that mental health experts should never perform armchair analyses of persons with whom they’ve never met to conduct an in-person physician-patient evaluation.

Cornell University psychologist Harry Segal, according to an article published by the New York Post, was reported as asserting, “we can spends the power of Trump’s underlying fear that he is worthless and weak by how intensely he resists and retaliates against any criticism. No matter how minor,” Segal continued, “he can’t let anything go.”

Psychologist Michelle Golland agreed. “We’re actually suffering from his narcissistic personality. He has no empathy. You can feel it, the way he spoke about the San Juan mayor…She has PTSD and our president mistreats her. She is re-victimized. That is a narcissist.”


Free speech is one of our most fundamental rights as US citizens. Demonstration against injustices is paramount to our democracy. But, is denouncing the president from the position of medical authority, when one has nothing more than a mere casual observation of his behavior whether it be on TV or through social media, unethical and irresponsible? Or are these physicians adhering to the Good Samaritan Laws?


In 1964, a survey of psychiatrists found that almost half of the respondents believed GOP presidential candidate B carry Goldwater was mentally unfit to be president of the United States of America. The survey included many unequivocal quotes from licensed psychiatrists. Some declared Goldwater as a “dangerous lunatic,” “paranoid,” and a “counterfeit figure of a masculine man.” Other MDs described Goldwater as having an “impulsive quality” and  others asserted emphatically that he was being “emotionally too unstable” and accused him of holding a “Godlike self-image.”

Take note. This is a significant precedent. While Goldwater lost the election, he did win his defamation lawsuit against the now-obsolete Fact magazine, which had published those responses and the psychiatrist survey. The president of the American Psychiatric Association labeled the entire incident as a “very public ethical misstep” and the APA moved to institute a code, known as the Goldwater Rule, which states that psychiatrists are to refrain from offering diagnoses of persons based solely on casual observation and nothing more.


Saturday’s psychologist march on Broadway is reminiscent of this incidence almost 50 years ago. While psychologists are not MDs, the same ethical principles must obviously apply. Their demonstration in a series of ethically dubious anti-Trump actions as members of the medical community must be evaluated.

In February, 33 mental health experts sent a signed letter to the New York Times warning of the president’s “emotional instability.” The letter read:

“We fear that too much is at stake to be silent any longer. The president’s words and actions reveal he has an inability to tolerate views different from his own, leading to rage reactions. Trump is attacking facts and those who convey them.”

Their offhand diagnosis is just that: an armchair diagnosis performed on a couch, without dialogue, observing the actions of someone, they do not know or have ever met or evaluated in-person, on TV.


So almost 50 years have elapsed since the Goldwater remarks. The ethical code established then, technically, applies only to MDs–not psychologists. Their extreme reaction to the rise of trump is justifiable; they have a right to express their thoughts, opinions, stance. That’s the First Amendment. But does the crossing of their personal opinions with their professional judgment constitute a violation of medical ethics? Or are they just practicing the Good Samaritan Laws? Of helping those in distress.

Once you diagnose someone outside the examination room you are breaking professional medical ethical codes–but, in fine print, this does not apply to MDs. Psychologists are not MDs. Psychiatrists are. The march was a march carried out by psychologists.


But, regardless of the technicalities, no mental health professional should hold the belief that they are responsible for diagnosing those who they have not privately, HIPAA-protected, during an in-person appointment, evaluated.

Trump may have a personality disorder–Narcissistic Personality Disorder or some form of a Cluster A Personality Disorder. He may be Bipolar. He may have impulse control issues. But it is not our responsibility, as citizens, to make that diagnosis. I personally do not believe his actions fall under the protections of the Good Samaritan Laws. We gain nothing, we do not benefit, as citizens or as a society by throwing diagnoses out to the TV from our armchair at home.

That evaluation, diagnosis, treatment–if needed–is the responsibility of Donald Trump’s personal physician or medical staff. And this applies not only to the president. No MD, or medical professional, has the ethical right to diagnose someone they personally have not evaluated in-person.

AND, importantly, if you do not have an MD, I apologize for my bluntness, but you have no right to diagnose anyone at anytime with any disorder or disease. Would you like your doctor to show up at your office and take over your job with no qualifications? I highly doubt you’d be pleased.


I’m sure you can guess my own position on Trump. But to avoid political discussion, which is not the point of this blog, I will not state my voting history or my political endorsements.

What I will adamantly state is that I endorse proper medical diagnoses made by qualified MDs, who not only completed 4 years of grueling medical school exams and evaluations, followed by endless days and nights of years in residency, in HIPAA-protected in-person evaluations and appointments. Not by psychologists. Not by university graduates. Not by PhDs. By MDs ethically.


The prognoses of armchair diagnoses is poor. There is little–if no–chance of success. Leave the diagnoses to the professionals: to the MDs behind closed doors.


LINKS

American Psychiatry Ethical Code

STRANGER THINGS: THE MONTAUK PROJECT AND MKULTRA 

THE SCIENTIFICALLY STRANGE HISTORY BEHIND NETFLIX’S HIT SHOW

If you haven’t already binge-watched, with reproachfully debasing interruptions from Netflix (“are you still watching?” Your reflection glaring back at you in disappointment,) the cult phenomena that is Stranger Things, you should set aside an hour–or 10–to begin Season 1 of the series before your friends begin discussion of Season 2 over draft beers. For starters, because it’s inexplicably addicting even if you aren’t a sci-fi fan. And secondly because it’s deeply rooted in conspiracist-propagated “true” events that supposedly began in the early 1980’s. I won’t include any spoilers but will delve into the show’s inspiration and foundation: the Montauk Project. In fact, writers pitched the show under the working title “MONTAUK.” But what’s eerier is the show’s mirroring of actual government sanctioned experiments that occurred over the course of several decades: the CIA’s implementation of MKUltra. It’s probably even stranger.

Prepare yourself because both stories–if true–are disturbing, wholly unethical to be modest, and makes you think “fuck if this happened then was 9/11 really a conspiracy theory? Oh fuck what about JFK?” You might consider packing a small lightweight suitcase, putting it under your bed, and carrying your passport in your wallet from now on “just in case.” Then you’ll probably start applying tape over your MacBook’s camera while jacking off to porn and unscrewing all your lightbulbs and demantling your iPhone to search for tiny wiretaps too (OK one spoiler–sorry.) But before you walk yourself into paranoia and a diagnosis of psychosis just yet, take a Xanax (just kidding…but really you should consider getting some) and read on.

The first is another story not unlike Area 51, involving space aliens and outrageous experimentation–all performed on a U.S. military base.

The second details experimentation on human subjects without their consent, government cover-ups, and disappearing documents.

So let me open your curiosity door and let’s learn a little about “Papa”…


THE MONTAUK PROJECT 

The Montauk Project was an alleged series of covert United States government projects conducted at Camp Hero or Montauk Air Force Station located on Montauk, Long Island. The project’s purpose was, purportedly, to develop psychological warfare techniques and conduct “exotic” research, including exploring the concept of time travel. Believers say that people were kidnapped at said U.S. Air Force base and subjected to mind control and time travel experiments. And extraterrestrials all actively participated in it.

Clearly nobody has been able to actually prove these allegations and all that’s left of this “Montauk facility,” which is now a state park, are the above-ground remnants of the original Air Force base. According to a document issued by the Air Force Historical Studies office, the Montauk base, then known as Camp Hero, was decommissioned in the early 1980s.

The quaint town of Montauk is a small seaside resort community on the tip of Long Island that draws vacationers to its shores every year. Camp Hero, located a short distance outside of Montauk, has origina as far back as the Revolutionary War, during which it was used to test military cannons. Later, during World War II, Camp Hero operated as a coastal defense installation against any possible Nazi intrusions into America.


Three men, Alfred Bielek, Stewart Swerdlow and Preston Nichols, claim that Camp Hero instead ended up as an underground site for the execution of scientific atrocities and unethical medical experimentation.


Bielek, a retired electrical engineer, maintains he was part of the mysterious Philadelphia Experiment, where in 1943, the U.S. Navy reportedly attempted to assemble a small destroyer undetectable to radar. The test ended in disastrous results, including the ship vanishing from the Philadelphia Navy yard and — “allegedly”– traveling through time.

According to Bielek’s story, he was uprooted, abducted, from Philadelphia, and transported ahead in time. He claims extraterrestrials were responsible for the technology used in this so-called Philadelphia Experiment. He also affirms he was recruited in 1970 to work on mind control and time travel projects at Montauk Facility.


Swerdlow’s story involves being kidnapped as a teenager from his Long Island, N.Y., home, taken to the Montauk base, and subjected to a variety of experiments.
Swerdlow recalls being subjected to horrific experimentation while at the Montauk facility.

“Beatings, a lot of torture, electrical shock, burials, near-drownings,” Swerdlow asserts. “They’d bring you to the point of death, and then they would save you, and the person doing this would be your rescuer or god, and would say, ‘I’m the one that saved you and remember that.’ And that became your handler — your programmer.”

He insists, “The walls were very damp, oozing water, so it appeared to be deep underground or even underwater. I was always on this cold, hard table. Sometimes there’d be other people around, either my age or older, and electrodes were put into me and injections.”


All three men profess to have seen first-hand extraterrestrials while employed at the underground Camp Hero facility.

“Well, there were quite a number of aliens at Montauk,” asserts Bielek. “Some were there on a semi-permanent basis. A lot of them were just visitors that came in and looked at what they wanted to see and went back home. There were little grays there, which I suspected were degenerated humans from out of the future. Large gray aliens (which are a different species) were also at Montauk, and they were highly intelligent.”


Nichols, like Bielek, was an electrical engineer at the time. He says he worked with Bielek in the mind control and psychic aspects of the Montauk Project.

“There were definitely alien beings at Montauk,” Nichols claims. “We had the little grays and the larger grays as well as a variety of reptilian beings. The large grays didn’t want anything to do with me because they couldn’t reach me telepathically. When I entered a room they would leave. They were the strangest thing that I ever saw. At that point, I was beginning to doubt my own sanity.”

And Swerdlow also avows an alien presence at Montauk: “Most of the time my interaction was with human beings, but I did come into close contact with alien beings. I did see, occasionally, intelligent reptilian humanoid beings as well as gray aliens who were once human beings but were physically altered as a result of degeneration and radiation toxins in their system. Most of them communicated with mental telepathy.”


In addition to igniting the flame that is Stranger Things, the myths, or realities, of Montauk Facility have also served as a basis for an upcoming film, “Montauk Chronicles,” written by Christopher Garetano.

Garetano shot much of his project at the actual site of Camp Hero.

“When you walk through the area now, you see this giant, imposing radar tower that still stands,” Garetano told AOL Weird News. “The park currently has strange regulations: You’re not supposed to use any radio equipment there and you are cautioned about unexploded ordnance. While filming my movie here, I couldn’t understand why people are allowed to walk around a park where there are still unexploded devices or why radio equipment isn’t allowed if the radar tower is now defunct and the entire base is completely non-operational.”


That question may be answered by a brochure issued in 2001 for visitors to Camp Hero. It includes a section called Unexploded Ordnance (UXO) Warnings: “Please follow the following steps if you think you have come across Unexploded Ordnance:”

  • Never transmit radio frequencies (walkie talkies, citizen’s band radio) near UXO.
  • Never attempt to touch, move or disturb UXO.
  • Avoid any area where UXO is located.

Garetano has pondered the ordinance’s bizarre warnings, stating it’s “strange that they don’t want you to use radio devices that may set off unexploded bombs, yet they allow the public to walk around a potentially high danger area!”

In addition to the enormous, looming, abandoned radar tower at the Camp Hero site, there are also giant doors, or bunkers, cemented and sealed into the side of various hills dotting the forest area. Also strewn throughout the wooded park are numerous apparatuses that appear to be above-ground manhole covers.

“These are entrances that obviously go down into something,” Garetano stated in the interview. “There are claims from people that these are entrances to underground tunnel systems that ran beneath the military base that allegedly would take you to the true entrance of the facility.”


Among the unusual reports included in the assertions made by the individuals who insist their experience of the Montauk events is a device they called “The Montauk Chair.” According to these alleged participants, a powerful psychic would sit in this specified chair and could then inexplicably materialize objects out of thin air and transform them into physical reality.


After spending countless hours with the men who are the subjects of his film, Garetano says he didn’t always believe their stories and suppositions.

“At first I didn’t. These men have not benefited financially — they didn’t gain anything from this. And they’ve endured ridicule as they maintain their story,” Garetano said.


As for Netflix’s hit show Stranger Things, the creators were inspired by the repressed memories of those who survived the Montauk horrors:

“Described as a love letter to the ’80s classics that captivated a generation, the series is set in 1980 Montauk, Long Island, where a young boy vanishes into thin air. As friends, family and local police search for answers, they are drawn into an extraordinary mystery involving top-secret government experiments, terrifying supernatural forces and one very strange little girl.”

An article published by Thrillist highlights a man named Preston Nichols, who also claims to have memories of being involved in the experiment known as the “Montauk Chair,” which, as I mentioned before, purportedly manifested the ability to initiate and amplify psychic powers.

An excerpt from Nichols’ book “The Montauk Project: Experiments in Time” describes one specific experiment he experienced at the facility:

“The first experiment was called ‘The Seeing Eye.’ With a lock of person’s hair or other appropriate object in his hand, Duncan [Cameron, supposed psychic] could concentrate on the person and be able to see as if he was seeing through their eyes, hearing through their ears, and feeling through their body. He could actually see through other people anywhere on the planet.”

Sound familiar? Do any esoteric mental images come to mind? Maybe an Upside Down portal?

And in this excerpt from Nichols’ book he writes how Duncan summoned a monster while on the chair:

“We finally decided we’d had enough of the whole experiment. The contingency program was activated by someone approaching Duncan while he was in the chair and simply whispering ‘The time is now.’ At this moment, he let loose a monster from his subconscious. And the transmitter actually portrayed a hairy monster. It was big, hairy, hungry and nasty. But it didn’t appear underground in the null point. It showed up somewhere on the base. It would eat anything it could find. And it smashed everything in sight. Several different people saw it, but almost everyone described a different beast.”

MKULTRA

The series Stranger Things also echoes another governmental project–this one indubitably somewhat legitimate, although details vary–known as Project MK-ULTRA, the CIA’s secretive, illegal program. Throughout its operation, the government carried out scientific research on human subjects. During the Cold War, the CIA subjected ill-informed patients to experiments with drugs, most notoriously LSD. Some argue the program was for the sole purpose of mind control.

Project MKUltra, also referred to as the CIA Mind Control Program, was the code name given to a program and implementation of experiments performed–at times illegally–on human subjects. The program was designed and enforced by the United States Central Intelligence Agency. The intention of these experiments on humans was to identify and develop drugs and procedures for use during interrogations and torture, so as to weaken the victim to force confessions through “mind control.”


The project began in the early 1950’s and was officially sanctioned in 1953. It was subsequently reduced in scope in 1964, further curtailed in 1967, and officially halted in 1973. The program engaged in an extraordinary number of illegal activities, including the use of unwitting U.S. and Canadian citizens as test subjects, which obviously led to widespread controversy regarding the project’s legitimacy.

MKUltra employed numerous methodologies to manipulate people’s mental states and alter brain functions: the surreptitious administration of drugs (especially LSD) and other chemicals, hypnosis, sensory deprivation, isolation and verbal abuse, as well as other forms of psychological torture.


The scope of Project MKUltra was notably broad, with research performed at 80 institutions, including 44 colleges and universities, and even at multiple hospitals, prisons, and pharmaceutical companies. The CIA operated through these institutions using front organizations. Yet top officials at these institutions were oftentimes aware of the CIA’s involvement. As the US Supreme Court later noted in CIA v. Sims 471 U.S. 159 (1985) MKULTRA was concerned with:

“The research and development of chemical, biological, and radiological materials capable of employment in clandestine operations to control human behavior.”

The program consisted of 149 subprojects, which the Agency contracted out to various universities, research foundations, and other similar institutions. At least 80 institutions and 185 private researchers participated and because the Agency funded MKUltra indirectly, many of the participating individuals were unaware that they were under the direction of the CIA.

Despite the Supreme Court ultimately upholding the CIA’s insistence that sources’ names could be redacted for their protection, it nonetheless validated the existence of MKULTRA to be used in future court cases and confirmed that for 14 years the CIA performed clandestine experiments on humans to study human behavior.


So, between 1953 and 1966, the CIA financed a wide-ranging project, code-named MKULTRA, which was concerned specifically with the research and development of chemical, biological, and radiological materials. These materials were to be utilized in clandestine operations to control human behavior but the existence of Project MKUltra wasn’t brought to public attention until 1975 when the Church Committee of the U.S. Congress, and a Gerald Ford commission began investigating CIA activities within the United States.

Investigative efforts were, however, hampered by the fact that, in 1973, CIA Director Richard Helms ordered all MKUltra files destroyed. As a result, the Church Committee and Rockefeller Commission investigations were forced to rely exclusively on the sworn testimony of direct participants and on the relatively small number of documents that survived Helms’ order that all evidence of MKUltra’s existence be destroyed.


In 1977, a Freedom of Information Act request uncovered a cache of 20,000 documents relating to project MKUltra, leading to Senate hearings in the last few months of the year. Interestingly, in July 2001, some surviving information regarding MKUltra was finally declassified.

As mentioned previously, 44 American universities, 15 research foundations or chemical or pharmaceutical companies, 12 hospitals or clinics, and three prisons are known to have participated in the project that was MKUltra.


In case you were wondering the origins of the project’s intentionally obscure CIA cryptonym. MKUltra is made up of the digraph MK, meaning the project was sponsored by the agency’s Technical Services Staff,) followed by the word Ultra (which previously had been used to designate the uttermost secret classification of World War II intelligence.)


Headed by Sidney Gottlieb, the MKUltra project began on April 13, 1953, on the order of CIA director Allen Welsh Dulles. Its aim was to develop mind-controlling drugs for use against the Soviets, largely in response to alleged Soviet, Chinese, and North Korean use of mind control techniques on U.S. prisoners of war in Korea. The CIA thought the methods were novel ones and hoped to use similar techniques on their own captives. The CIA was also interested in developing the capacity to manipulate foreign leaders with such techniques and would later invent profuse schemes in order to intoxicate and mentally override Fidel Castro.

Experiments were too often conducted without the subjects’ knowledge or consent. Further, many academic researchers who were funded through grants from the CIA’s front organizations were unaware of the manipulative purposes of their work.


The project’s quintessential goal was to produce the ideal “truth drug” to use during the interrogations of suspected Soviet spies during the Cold War. However, the program’s intentions generalized to explore any other possibilities of human mind control.

Because most MKUltra records were deliberately destroyed in 1973 by order of then CIA director Richard Helms, it has been difficult, if not impossible, for investigators to gain a thorough and definitive understanding of the more than 150 individually funded research sub-projects sponsored by MKUltra and other related CIA programs.


Returning to the project’s birth, MKUltra materialized during a period of, what Rupert Cornwell described as, “paranoia” within the CIA; the U.S. had lost its nuclear monopoly and fear of Communism was at its height. James Jesus Angleton, head of CIA counter-intelligence, postulated that the organization’s protective shell had been infiltrated by a mole at the highest level.

So, the CIA poured millions of dollars into studies examining methods of manipulating and controlling the mind to enhance their ability to extract information from resistant subjects during interrogation.


One 1955 MKUltra document gives an indication of the size and range of the effort; this document refers to the study of an assortment of mind-altering substances described as follows:

  1. Substances which will promote illogical thinking and impulsiveness to the point where the recipient would be discredited in public.
  2. Substances which increase the efficiency of mentation and perception.
  3. Materials which will cause the victim to age faster/slower in maturity.
  4. Materials which will promote the intoxicating effect of alcohol.
  5. Materials which will produce the signs and symptoms of recognized diseases in a reversible way so that they may be used for malingering, etc.
  6. Materials which will cause temporary/permanent brain damage and loss of memory.
  7. Substances which will enhance the ability of individuals to withstand privation, torture and coercion during interrogation and so-called “brain-washing”.
  8. Materials and physical methods which will produce amnesia for events preceding and during their use.
  9. Physical methods of producing shock and confusion over extended periods of time and capable of surreptitious use.
  10. Substances which produce physical disablement such as paralysis of the legs, acute anemia, etc.
  11. Substances which will produce a chemical that can cause blisters.
  12. Substances which alter personality structure in such a way that the tendency of the recipient to become dependent upon another person is enhanced.
  13. A material which will cause mental confusion of such a type that the individual under its influence will find it difficult to maintain a fabrication under questioning.
  14. Substances which will lower the ambition and general working efficiency of men when administered in undetectable amounts.
  15. Substances which promote weakness or distortion of the eyesight or hearing faculties, preferably without permanent effects.
  16. A knockout pill which can surreptitiously be administered in drinks, food, cigarettes, as an aerosol, etc., which will be safe to use, provide a maximum of amnesia, and be suitable for use by agent types on an ad hoc basis.
  17. A material which can be surreptitiously administered by the above routes and which in very small amounts will make it impossible for a person to perform physical activity.

CIA documents indicate that “chemical, biological and radiological” methods were investigated for the purpose of mind control by MKUltra . An estimated $10 million USD (roughly $87.5 million adjusted for inflation) or more was spent in total.


LSD

Early CIA efforts focused on LSD9/589, which later came to dominate many of MKUltra’s programs. The CIA aimed to investigate whether or not they could make Soviet spies defect against their will and whether the Soviets could do the same to the CIA’s own operatives.

Once Project MKUltra officially commenced in April 1953, experiments included administering LSD to mentally ill patients, prisoners, drug addicts and prostitutes, or as one agency officer put it simply, “people who could not fight back.”

LSD, among other drugs, was usually administered without the subject’s knowledge or informed consent, an explicit violation of the Nuremberg Code (a code drafted to establish international human rights laws and signed by the US.)

The aim of administering such medications was to discover drugs which would irresistibly evoke deeply seated confessions or wipe a subject’s mind clean–deleting unwanted information–and subsequently re-programming the individual as “a robot agent.”

Some subjects’ participation was in fact consensual but in these cases they were specifically singled out for even more extreme experiments. In one case, seven volunteers in Kentucky were given LSD for 77 consecutive days.


Eventually, LSD was dismissed by MKUltra’s researchers as too “unpredictable” in its results. They gave up the notion that LSD was “the secret that was going to unlock the universe.” Nevertheless, the drug still remained within the CIA’s arsenal of potential interrogative methods of operation.


By 1962 the CIA and the army had developed a series of “super hallucinogens,” including the highly touted BZ which was thought to hold greater promise as a mind control weapon. This resulted in many academics and private researchers withdrawing their support and ultimately LSD research became less of a priority altogether.


HYPNOSIS

Declassified MKUltra documents prove that hypnosis was studied as  early as the 1950’s. Experimental goals included: the creation of “hypnotically induced anxieties,” “hypnotically increasing ability to learn and recall complex written matter,” investigating hypnosis and polygraph examinations, “hypnotically increasing ability to observe and recall complex arrangements of physical objects,” and studying the “relationship of personality to susceptibility to hypnosis.”

Experiments were conducted with drug induced hypnosis and with anterograde and retrograde amnesia while under the influence of such drugs.


DEATHS

Given the CIA’s purposeful destruction of most records, its failure to follow informed consent protocols with thousands of participants, the uncontrolled nature of the experiments, and the total lack of follow-up data, the exhaustive impact of MKUltra’s experimentations on human subjects, including resultant deaths, may never be known.

However some deaths associated with involvement in Project MKUltra’s experimental process have been reported. The most notable case is that of Frank Olson.

Olson, a United States Army biochemist and biological weapons researcher, was given LSD without his knowledge or consent in November, 1953, as part of a CIA experiment. One week later, while still under the influence of LSD, Olson committed suicide by leaping out of a window.

The CIA physician who was assigned to monitor Olson during these “trips” claimed to have been asleep in another bed in a New York City hotel room when Olson exited the window and fell thirteen stories to his death.

In 1953, Olson’s death was declared a suicide following a severe psychotic episode. The CIA’s own internal investigation concluded that the head of MKUltra, CIA chemist Sidney Gottlieb, had conducted the LSD experiment with Olson’s prior knowledge, despite the other men taking part in the experiment later asserting that they had not been informed as to the exact nature of the drug until approximately 20 minutes after its ingestion. The report further suggested that Gottlieb was nonetheless due a reprimand, as he had failed to take into account Olson’s previously diagnosed suicidal tendencies, which clearly might have been exacerbated by the administration of LSD to Mr. Olson.


The Olson family disputes the official version of events. They maintain that Frank Olson was murdered. According to their statements, Olson had become a security risk and was eliminated out of fear he might divulge state secrets associated with highly classified CIA programs, about many of which he had direct personal knowledge.

A few days before his death, Frank Olson quit his position as acting chief of the Special Operations Division at Detrick, Maryland (later Fort Detrick) because of a severe moral crisis concerning the nature of his biological weapons research. Among Olson’s concerns were the development of assassination materials used by the CIA. The CIA’s use of biological warfare materials in covert operations, experimentation with biological weapons in populated areas, collaboration with former Nazi scientists under Operation Paperclip, LSD mind-control research, and the use of psychoactive drugs during “terminal” interrogations under a program code-named Project ARTICHOKE.

Further, ensuing forensic evidence conflicted with the official version of events; when Olson’s body was exhumed in 1994, cranial injuries indicated that Olson had been knocked unconscious before exiting the window. The medical examiner subsequently declared Olson’s death a “homicide.”

In 1975, Olson’s family received a $750,000 settlement from the U.S. government and formal apologies from President Gerald Ford and CIA Director William Colby, though their apologies were limited to informed consent issues concerning Olson’s ingestion of LSD.

On 28 November 2012, the Olson family filed suit against the U.S. federal government for the wrongful death of Frank Olson.

A 2010 book by H. P. Albarelli Jr. alleged that the 1951 Pont-Saint-Esprit mass poisoning was part of MKDELTA, that Olson was involved in that event, and that he was eventually murdered by the CIA. However, academic sources attribute the incident to ergot poisoning through a local baker.


MKULTRA AND INFORMED CONSENT 

The revelations about the CIA and the Army prompted a number of subjects or their survivors to file lawsuits against the federal government for conducting experiments without the explicit consent of its subjects, which is required in all medical practice. Although the government aggressively, and sometimes successfully, sought to avoid legal liability, several plaintiffs did receive compensation through court order, out-of-court settlement, or acts of Congress. As previously mentioned, Frank Olson’s family received $750,000 by a special act of Congress, and both President Ford and CIA director William Colby met with Olson’s family to apologize publicly.

Previously, the CIA and the Army actively and successfully sought to withhold incriminating information regarding MKUltra, even whilst secretly providing compensation to the families.


The medical trials at Nuremberg in 1947 deeply impressed upon the world that experimentation with unknowing human subjects is morally and legally unacceptable. The United States Military Tribunal established the Nuremberg Code as a standard against which to judge German scientists who experimented with human subjects. In defiance of this principle, military intelligence officials began surreptitiously testing chemical and biological materials, including LSD through Project MKUltra.

Justice Sandra Day O’Connor wrote:

“As Justice Brennan observes, the United States played an instrumental role in the criminal prosecution of Nazi officials who experimented with human subjects during the Second World War, and the standards that the Nuremberg Military Tribunals developed to judge the behavior of the defendants stated that the ‘voluntary consent of the human subject is absolutely essential … to satisfy moral, ethical, and legal concepts.’ If this principle is violated, the very least that society can do is to see that the victims are compensated, as best they can be, by the perpetrators.”

In separate posts I will discuss the significance of informed consent in medical practice and its development through historical, often atrocious, events.


THE AFTERMATH OF MKULTRA

At his retirement in 1972, Gottlieb dismissed his entire effort for the CIA’s MKUltra program as useless. Although the CIA insists that MKUltra-type experiments have been abandoned, some CIA observers, disturbingly, insist there is little reason to believe it does not continue to operate today under a different set of acronyms.

Victor Marchetti, author and 14-year CIA veteran, stated in various interviews that the CIA routinely conducted disinformation campaigns and that CIA mind control research has in fact continued to remain a governmental experiment. In a 1977 interview, Marchetti specifically called the CIA’s claim that MKUltra was abandoned a “cover story.”


BACK TO STRANGER THINGS

Despite the series’ clear reflection of two separate but not entirely dissimilar apparent events, although the disputed legitimacy of each vary, the creators of Stranger Things, Matt and Ross Duffer, have been strangely coy about any connection the show’s theme has to the Montauk Project (or any other potential government covert experimental operations.) Instead, they have only remarked that ditching the original “Montauk” title was “very painful.”


Sounds strange to me. Have stranger things occurred? Probably. But this is definitely one of the strangest. Scientifically speaking.

What else might be stranger? Winona Ryder and her facial expressions…but that’s off-topic.

UPDATE: NFL USING BIOMECHANICAL RESEARCH TO IMPROVE HELMET TECHNOLOGY

THE LEAD DRAFT PICKS IN CHAMPIONING PLAYER SAFETY

DISCLAIMER: This is an update on my previous post “DEFLATE-GATE: THE MEDICAL FIELD VERSUS THE NFL.” To best refresh your knowledge on NFL, concussions, CTE, and the PBS documentary that hit the NFL hard, refer to my previous post before perusing this one.


On September 14, 2016, the NFL launched a website: playsmartplaysafe.com to highlight their involvement in CTE research and detail their efforts in protecting players.

It’s a huge website, packed with lots of info and long articles describing their playbook. I’m going to simplify it for you because who has hours to spend reading every word the NFL has to say about player safety and the research their involved with. Think of this blog like the New York Post: I’m your friend who read everything and now I’m texting you the highlights.


The website is headlined by a letter from NFL commissioner Roger Goodell. It’s long. But here are the important points and quotes.

200 million people call themselves football fans–NFL fans. Goodell makes sure to, politely, say “duh it’s a contact sport that’s why people watch. They love seeing the action and the big hits.” In his words: “because on any given game day, something incredible is going to happen.”

This is too true. I mean, even if you don’t watch football, you probably watch The Bachelor to turn to your friend and say “OMG I can’t believe she just threw that drink in that bitch’s face” or if you watch Game of Thrones…well just go to YouTube and watch Seth Myers watch an episode with Leslie Jones: “THE DRAGONS! HERE  COME THE DRAGONS!!! OH YEAH BABY!!! BURN THOSE MOTHERFUCKERS!!!”

Well, football fans do the same thing: “Why the FUCK didn’t they just do XYZ? Fucking idiot coach. NO the Patriots are not winning this game are you kidding me? I’ll bet you $50 the Seahawks will crush them.”

Ok so you get the point. Goodell says, in his letter, that the NFL has made significant steps in improving the health and safety of their players: safety-rule changes, advancements in equipment, improved medical protocols, blah blah blah. But then he makes a valid point:

“Rightfully, much of the public discussion is about concussions—how they happen, how they can be prevented and treated and what is known about their long-term impact. That is what I want to focus on here today.
The NFL has been a leader on health and safety in many ways, and we’ve made some real strides in recent years. But when it comes to addressing head injuries in our game, I’m not satisfied, and neither are the owners of the NFL’s 32 clubs. We can and will do better.”

Agreed. So the NFL launched Play Smart. Play Safe: an initiative to drive progress in the prevention, diagnosis and treatment of head injuries, enhance medical protocols and further improve the way the game is taught and played by all who love it,” according to its website.

$200 million: amount the NFL has pledged to research

  • $100 million pledged in 2016 to support independent medical research and engineering advancements
  • $100 million has already been spent on medical and neuroscience research since 2008

Goodell emphasizes he wants to keep players and the public informed about any efforts or advancements the NFL is making in making the game safer (but really to reduce the incidence of CTE, which has caused a whirlwind of public controversy since 2008–see my previous post.)


The NFL has also:

  • Hired a leading physician to serve as Chief Medical Officer of the NFL, who will work full-time with each team’s medical and administrative staff, the medical committees of the NFL and NFL Players Association (NFLPA,) and scientific and medical communities. Goodell states he wants to make sure the NFL has the most up-to-date info to advance research in science and sports medicine for injury prevention, diagnosis, and treatment.
  • Established a scientific advisory board (SAB,) composed of leading MDs, scientists, and clinicians to collaborate together to propose ideas for future research into concussions, head injuries and their long-term effects. The SAB is spearheaded by retired US Army General Peter Chiarelli who stated, “Our job is to take a commitment that the NFL has made of $40 million, and help them spend that money wisely,” he said. “To try to produce something that’s going to help us in the area of concussion or traumatic brain injury.”

“As we all learn more about concussions and take further steps to ensure our players are being properly cared for—and properly caring for themselves and their teammates—there may be an increase in reported concussions, as happened last season. So while no one wants to see concussion numbers rise, we firmly believe that more screening, self-reporting and collection of concussion data will inform increasingly reliable preventive measures. This is an important culture change for all of us.”

So the initiative is organized into four pillars:

  1. Protecting Players
  2. Advanced Technology
  3. Medical Research
  4. Sharing Progress

PROTECTING PLAYERS

“We commit to making changes on and off the field that will protect the health and safety of every player in the NFL.”

This includes 42 rule changes since 2002. Goodell underscores that data will drive future changes in the rule-book and guide potential options that may result in safer play.

Not all changes are just changes during the big games we watch on Sundays and Monday nights. Some include changes to reduce contact during practices.

NFL sidelines now have 29 medical personnel at every game: neurological consultants, trainers, etc.

There’s now a protocol in place to educate players and their teams. Goodell aims to focus on player safety education and ensure they have access to the best available information to protect themselves.

Further, “For the benefit of our retired players, the NFL reached an historic settlement with NFL retirees and their families. The agreement will provide significant monetary awards to former players diagnosed with neurocognitive and neuromuscular impairments, without regard to whether the conditions are related to playing professional football,” which might actually benefit my grandfather (future post.)


ADVANCED TECHNOLOGY

Goodell affirms that he is committed to championing new developments in engineering, biomechanics, advanced sensors and material science that mitigate forces and prevent injuries, including those that occur in the military.

The NFL has allocated $60 million to this effort. Building on the successful model used in the NFL’s Head Health Challenge with GE (scroll to bottom of post to learn more,) the NFL will “continue to crowdsource and support the best ideas from engineering experts around the world so that they can apply their expertise to these challenges.”

OK NOW FOR THE BIG HEADLINER: HELMET ENGINEERING

Goodell writes that better helmets can help tackle the issue of increasing concussion incidences (um obviously.) He references the automobile industry and advanced car safety techniques and suggests that a similar engineering approach could potentially improve helmets within 3-5 years. Sounds pretty good. But, first the inherent problems in current helmet designs must be identified before the marketplace can begin designing solutions.

Now he mentions “position-specific helmets,” which, when I read this, thought: “TOUCHDOWN!” Linemen experience different impacts than a wide receiver who experiences different impacts than a defensive back, and so on. The more data available on injury-producing conditions, and how they vary by position, the more targeted the engineering design of helmets can be. Crandall:

“Given that players experience different types of impacts depending on their position, what we’d ultimately like to do is have helmets that are designed specifically for each position.”

Optimizing and individualizing the design of helmets depending on the player’s position on gameday would be huuuuuge.

How else is the NFL using Biomechanical Research to support improvements in helmet technology?

Well, research with crash-test dummies for one. Biomechanical experts are measuring impacts with special sensors implanted on the dummies and capturing images of the dummies’ motions with high resolution motion cameras. The NFL has just recently committed $60 million to champion engineering success and ensure their advancement to the playoffs.

The NFL has just implemented an Engineering Roadmap (they should’ve called in a playbook don’t ya think?)

“The Roadmap, guided by engineers who advise the NFL and NFL Players Association (NFLPA), is creating incentives—and supplying new data—for sporting goods companies, manufacturers, small businesses, entrepreneurs, universities and others from around the world to develop new and improved helmets and protective equipment.”

Dr. Jeff Crandall, Director of The Center for Applied Biomechanics at The University of Virginia and Chairman of the NFL Engineering Committee, is leading the effort in gathering this data. “We’re going to use the data from these tests to design better laboratory experiments,” he said. “We want to understand the motions, the forces and the accelerations that occur during a game so we can recreate them in the laboratory.”

Forces may result from: helmet-to-helmet impacts, helmet-to-ground impacts, or helmet-to-shoulder impacts.

Researchers are also using computation models of helmets to study their design in precise detail and the exact motions of the head and body during impacts.

Here is the best part: Quanterix, one of the companies that won the first GE-NFL collaborative Head Health Challenge, is in the process of developing a BLOOD TEST to diagnose concussions. How amazing would that be, right? Simply take a vial, send it to the lab, read the report, and decide on a treatment plan? As simply as diagnosing high cholesterol? This would be an absolute win for the NFL and its players. It would be the equivalent of a medical SuperBowl championship ring.

The second GE-NFL collaboration, Under Armour Head Health Challenge, named Viconic as one of its finalists. This company produces an under-layer for artificial turf fields that can absorb a considerably higher amount of force than current fields (think about slamming your head against your wall–which you may occasionally do at home every once in a while after a rough day–versus stuffing your head in a pillow–which I bet more of you do when frustrated. Holes in walls are pricier to fix.) The product is still not available but Goodell reassures us that the company is in its final stages of testing it before it can be made commercially available.


MEDICAL RESEARCH

“We commit to investing in and partnering with preeminent experts and institutions to advance progress in the prevention, diagnosis and treatment of head injuries.”

More than $40 million in funding has been allotted by the NFL for medical research over the next five years. The amount is primarily delivered to the field of neuroscience. This is in addition to the $30 million that the NFL has already given to the National Institutes of Health.

Mainly, the NFL wants to examine the long-term effects of concussions, the incidence and prevalence of CTE (read my other post. Chronic Traumatic Encephalopathy,) and what the best defensive plays are in slowing the advancement of CTE towards its End Zone.

Goodell acknowledges that debate and disagreement will arise but welcomes both to promote the finding of solutions to optimize player health.


SHARING PROGRESS

Goodell wants to share the NFL’s research and findings to all levels of football and to other sports and to society at large.

“We wholeheartedly believe in the value of young people playing football and other sports. We embrace the opportunity to be leaders in athletic safety. We know that families across America grapple with whether to let their children play football. And we appreciate that there is real concern about tackle football.”

He ends with assuring that the NFL is committed  to funding new studies to examine how age, size, cognitive development, and other factors should impact athletic youths.

“Our goal will be to equip parents with the best available information to make decisions about their children’s participation in football and other contact sports.”

Some additional but noteworthy points:

The NFL and Football Research, Inc.—a nonprofit corporation formed and financially supported by the NFL—partnered with Duke University’s Clinical and Translational Science Institute (Duke CTSI) to create the HeadHealthTECH Challenges. TECH Challenge applicants receive constructive feedback from Duke CTSI biomechanical experts to help refine their innovations.

Some examples of winners of these challenges:

  • Vyatek Sports received a grant of $190,000 to support development and testing of its Zorbz technology, a series of highly efficient energy-absorbing modules added to a helmet system that can be removed and replaced after a significant impact.
  • Windpact received a grant of $148,000 to support prototyping and testing of its Crash Cloud™, an impact liner system using restricted air flow and foam in helmets and protective gear.

Good for you Goodell. Let’s hope we see a a reversal in the increased incidence of concussion observed last season in this year’s season and in the future.


LINKS

Using Biomechanical Research to Support Improvements in Helmet Technology

Engineering Roadmap