To ensure HIPAA compliance, personally identifying information has been omitted/changed and certain details of these encounters have been modified to protect the patients and their families.
What Did You Just Say? One day in Neurology clinic, I had a follow-up appointment with a patient for tremor. He was 80 years old and from rural North Carolina (about a two-hour drive away). Let's call him Mr. S. He always brought his daughter to the visits. "How are you doing today, Mr. S?" I greeted the patient and his daughter warmly upon entering the room. Ie made my way over to the chair with the computer and we proceeded with our visit. I was glad to hear that he was doing well on the topiramate (an anti-seizure medication that is considered second or third-line for essential tremor). Initially, he tried propranolol, but he did not tolerate it due to gastrointestinal upset. Primidone was not tried because it could interfere with another medication he was taking for long-term immunosuppression after a transplant. Mr. S was pleasant, though oftentimes he went on tangents about random topics, such as the part-time work he was still doing in construction and his family (he always bragged about his 18 grandchildren. Yes, 18). He could also be quite interruptive whenever I spoke (but not as interruptive of our male supervising attendings, might I add), so today I tried hard to keep us on track. Just as we wrapped up our chat and I began to stand to do the neurological exam, Mr. S started another story, this time about his previous neurologist. He spoke with disdain about this physician, who practiced closer to Mr. S's hometown two hours away. "The propranolol he gave me helped at first, but it really made me sick," Mr. S said. I wasn't quite sure why we were rehashing something that was already established several visits ago, but I quietly listened anyway. "You know, I don't like that neurologist. He was dark-skinned, from India." Whoa. All I could do was stare at Mr. S. A million thoughts ran through my mind: Is he even hearing what he's saying?! And to ME, no less? If he doesn't like this other physician who is dark-skinned, then what is he trying to say to me about me? How is this at all relevant to the visit? Should I just cut him off and get back to the exam? The neurologist might not be from India, maybe he's from another South Asian country, the Middle East, or even somewhere in Europe or Africa. Why the automatic assumption that this "dark-skinned" physician with "Indian" features is from India? The latter thought was, in the grand scheme of things, an irrelevant response to Mr. S's completely inappropriate comment. I decided to counter with, "But I'm dark-skinned, Mr. S." Then I stared at him while resting my chin in my hand to see how he would respond to that. I just wanted him to have some semblance of self-awareness about the words that were coming out of his mouth. Mr. S stumbled a little. "No, I know you're dark-skinned. But that's different. He's a foreigner, from Iraq or India or something like that. He was born out there. You're from here." I noticed that the daughter was completely silent this entire time. I couldn't help but wonder what she was thinking. Was she embarrassed about her father's behavior? I didn't have time for this nonsense. We were getting too far off track and I needed to see my next patient. I immediately changed the subject and brought us back to the issue at hand. When he returned to the clinic months later, we carried on as if he'd never made any racist comments and revealed his true self. I shared the story with a few of my colleagues and my family. My colleagues were astonished, and my family found it humorous. "Well, you're in the South, Deb," they told me. When I told my mother the story, her immediate question was, "Did your patient have any mental or cognitive issues?" In fact, he did not. All of his cognitive faculties were intact, but given his overt racist ideology, I'd argue that my mother wasn't too far off to wonder if he had some issues with his mind. Racism is a reflection of moral failure, likely lack of education and enriching exposure to cultural diversity throughout one's life, and quite frankly, utter stupidity. The foundation of racism is the belief that a group of people are inferior to another simply because they have more melanin in their skin.... and look "different". That's really what it comes down to. And that is foolishness. It is easy for us to recognize the faults in our patients who might come to us with this ideology, but it's just as important for us to recognize any biases within ourselves. I'm personally passionate about addressing health disparities among groups that have experienced socioeconomic disadvantages historically, but I'm far from perfect myself. It should be our goal as providers to practice constant self-reflection and strive to recognize any ounce of bias within ourselves that can potentially impede our interactions with our patients or the care we're providing for them. "The only way to prevent unconscious biases from influencing our actions is to scrutinize our social behaviors, even in situations when we believe ourselves to be above discrimination." - Donald Barr, MD, PhD, Health Disparities in the U.S. (2019).
Why So Stubborn? Earlier this spring 2022, I saw a 70-year-old male patient in the Neurology clinic at the VA Hospital with one of our well-known attendings in the Department. When asked why he presented to our clinic for the first time, his response was a shrug and a "I don't know. It should be in the records." (I can't tell you how often we hear this, especially at the VA). Review of his medical records revealed that his primary care physician was concerned about memory and walking issues. The description in the note was scarce, but it did mention that he had a heavy drinking history. There was no other contact information in the chart. No one was listed as an emergency contact. The patient, who we will call Mr. M, came to the clinic visit alone. Whenever a patient is coming in with "memory issues", he/she should always come with a loved one who can provide collateral information.
I learned that Mr. M lived alone, was not married, had no children, did not have many friends, and did not speak to his family. Unfortunately, trying to speak with Mr. M about the memory issues was like a painful climb uphill. I was not getting anywhere, and the information he provided was not helpful.
I started off open-ended. "Mr. M, tell me about these memory problems you have been having."
"My memory is fine," he shrugged.
Great start.
I thought that offering some examples might be useful. "Have you been having any difficulty remembering things like conversations from earlier in the day, tasks that you need to complete throughout the day, or perhaps words that used to come quickly to your mind when speaking with others?"
"No."
"Have your family or friends ever expressed any concern about your memory?"
"I don't have no friends. And I don't talk to my family. My sister owes me $5,000."
"Do you have a support system around here?" I asked.
"I used to have friends. They would always just call me "crazy" whenever we went out to drink. So I don't hang out with them no more."
I waited for him to offer more information but none came. "What do you mean by 'crazy', Mr. M?"
He shrugged. "I don't know, they just called me crazy."
Dear Lord. I began to feel like I was being punished. Again, I provided some options. "Did they call you crazy because of something you did? Was it the way you were dressed? Your speech? Did you drink too much? Why were they calling you crazy?"
"It wasn't because I drank too much. I don't know why."
"Can you think of anything at all, Mr. M?" I felt myself trying to control my annoyed tone. This was probably the best I was going to get for collateral information.
He paused. "Well, they thought I stumbled on my feet a lot, and that I'd say things that don't make sense."
OK maybe this was going somewhere. I decided to address the stumbling first. "Have you noticed that you've been stumbling on your feet too?"
Mr. M proceeded to describe, with more painful prompting, a picture of syncopal episodes; in his mind, however, the "blacking out" and frequent falling were due to vertigo. (Vertigo, by definition, refers to a sensation of false motion, which he did not at all describe). He refused to use a cane or any assistive walking device because it "made him feel old". (You are 70 years old, Mr. M, I wanted to say). “I just don’t have to fall backward and I’ll be good."
As for "saying things that don't make sense", he explained that months ago, his friends told him he'd forget conversations and had word-finding difficulties from time to time. Throughout all of this, he continued to dismiss his friends' concerns and adamantly state that his memory was fine. I couldn't help but wonder if a denial of the memory problems led him to cut off his friends.
He denied having any problems with his activities of daily living (bathing, dressing, toileting, eating) or instrumental activities of daily living (managing finances and medications, going grocery shopping, driving, etc). Truthfully, I didn't believe some of this because I could already tell that the information he provided wasn't very reliable. He reported drinking only 2 beers/day and 4 on the weekends (also didn't quite believe this given a significantly documented heavy drinking history). He scored a 16/30 on the Montreal Cognitive Assessment (MoCA), our most commonly used neurocognitive test in the Neurology clinic. 16/30 is a poor score, but the MoCA has cultural, language, and educational biases. His highest level of education was high school.
My attending (who has practiced neurology for over 40 years) and I spent a long time trying to convince Mr. M to speak with our Social Worker and see the cardiologists for his episodes of loss of consciousness that were consistent with syncope. He spent 20 minutes alone insisting to my attending (again, who has practiced neurology for over 40 years) that his "blackout" episodes were due to vertigo, not syncope. I grew frustrated after we spent a long time (and multiple times) trying to patiently explain the difference to him. This also wasn't the primary reason for the visit in the first place.
While writing the note after the visit, I couldn't help but feel discouraged. My initial frustration turned into sadness. We diagnosed the patient with mild cognitive impairment and insisted that he speak with our Social Worker for resources (including an assistive device to help protect against the falls, and get plugged in to a VA support program for individuals with cognitive impairment. We felt particularly strongly about getting him connected to these resources because he had no family or friends around. I was discouraged because he was refusing help (which made me wonder why he even came to the appointment in the first place), and because there was a possibility in the near future he'd suffer another syncopal episode that could result in a massive head injury. Or continue to decline in his cognition, impairing his ability to even take care of himself and complete activities of daily living.
How do you help someone who doesn't want to be helped? This was a particularly challenging case because it hit close to home (I have had many personal experiences with struggling to help loved ones who do not wish to be helped), but I also found it galvanizing to strive to advocate for patients (especially those that have historically suffered from many social disadvantages) even when they cannot or refuse to demand for themselves the things they need to be in good health.
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The annual meeting for the ANA was held this year in Boston! It was such a great time. The IDEAS (Inclusion/Diversity/Equity/Anti-Racism/Social Justice) committee held a reception one evening during the conference. As one of the recipients of the IDEAS Junior Member Award, I gave a brief presentation about my research. Admittedly, I was much too excited while preparing the PowerPoint and added more preliminary data than necessary :) We were also given the opportunity to share a little bit about what inspired us to pursue our respective areas of research.
Dan Dan Noodles: I ordered Shrimp Fried Rice and vegetables :) Super delicious.
