“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.