Resilience and Hope through Human Connection

By David Carlson, MS4

As with all writing published on Stories in Medicine, locations and names in this piece have been changed.

force of will
Force of Will, by Matt Stewart 

21 years old, T-cell lymphoma, on multiple chemotherapy agents, now presenting with new neurologic problems – slowed speech, shaking in both hands, and right leg shaking that could be suppressed. This is the kind of tragic picture that can affect even people who have studied medicine for years and witnessed many incredible and horrible cases.

For a birthday that people often celebrate by going out on the town for the first time, this young woman spent receiving chemotherapy.  In addition to her slowed speech, her mood had been affected too – she was struggling to deal with this information, and her family was too.

dave hairI decided to do something I rarely do – my new haircut (thanks Dominic!) exposed my craniotomy scar, so I showed it to them and pulled up the MRI on my phone. “My heart goes out to you, I was diagnosed with a brain tumor almost two years ago and went through a full year of chemo cycles. I know it’s not fun.”

I hoped they would just appreciate the gesture, but her dad immediately said, “that’s so inspirational right there” and I saw his eyes light up. “Thank you for telling us that, Doctor Dave.” I could feel goosebumps underneath my white coat. There’s no amount of medical training that can account for the human element of healthcare – forging a connection with someone through shared understanding of the deeper aspects of how our physical ailments affect us.

He asked me more and I told them – it was brutal, I went through 5 days of chemotherapy every month, and now I’m done with that and back in school. I lost vision in the left side of both eyes, had to relearn to drive, and retake my driver’s test. Just last week, I had passed my driver’s test!

Excitedly, her dad asked me “Can you show that picture to Jay? Take a look at this – he had cancer too, and now he’s right back in med school.” She saw the picture, and in her soft, trembling voice, said “wow, that’s big.”

As the visit went on, the dad felt comfortable asking me more questions. He wanted to look at the MRI of her head, hear more about the pathways that were being affected and about how the treatments were supposed to work.

That same visit, she uttered “well, maybe I can get better.” That moment of hope and optimism stuck with me:  Research has shown that optimism, resilience, and social engagement are all associated with improved outcomes in people facing serious illnesses. This is something we’ve long believed – proliferated through anecdotes and folk tales – but we have only recently begun to quantify this connection scientifically.

cancer cell no 11 angela canada-hopkin
… … . … . . .. . . . . . … … Cell No. 11, by Angela Canada-Hopkins from her Cancer Cell Art series

 

Despite this increasing knowledge, it is harmful and difficult to talk about cancer patients needing to find the will to survive. Surviving cancer is a far more brutal task than that. Your body is being harmed by your own cells, and the only ways to appropriately treat most cancers are through surgery, chemotherapy and radiation – all designed to remove or kill specific cell lines, but none completely efficient at this task. You lose some of your “good” cells, and the body responds as it would to any other major assault: with fatigue, nausea, hair loss, weight changes, and other losses specific to the type of treatment.

So there’s the physical stress and pain, the derailment of the “onward trajectory” of life that we all assume we’ll maintain, and the additional aspect of dealing with loss:

  • Loss of cash due to treatment costs
  • Loss of productive time – months to years of suffering, treatment, and follow-up
  • The loss (initially) of a sense of hope and well-being, which are battling the multi-headed giant of fear, sadness, uncertainty, anxiety, and having to rely on others (possibly parents), which raises myriad issues we thought we’d outgrown.

Over the next days, I continued to round on my group of patients but found myself spending a bit more of my “down time” with this young woman and her parents (one of whom was always present).

I spoke with her and reflected on the wisdom I had gained from battling cancer myself. 

I talked about being amazed by the people who came around to offer support – many whom I hadn’t seen in years or had only met briefly, students I had taught or tutored before medical school who recalled the impact I had on them, high school friends who thanked me for small gestures of kindness during those tender years over a decade ago, and friends of friends who knew someone else fighting this fight and wanted to share goodwill and support.

I shared how it reminded me of the importance of people and human connection. So often we get caught up chasing goals and tasks, and forget to cherish those rare moments in time when we share part of our finite life-span enjoying the company of others who are also grateful to spend some time with us. I don’t know for sure, but I can’t imagine on my deathbed remembering chance encounters with celebrities, but instead the timeless joy of connecting with friends and family.

We will all die with items in our to-do list and bucket lists, but I don’t believe that’s what matters most. I remember a time before learning mine was a lower-grade brain tumor (and thus gave me a much better prognosis) when I thought about life and was most grateful for good times spent with family and friends. And luckily I have a second chance at life, with that new level of awareness, a still-long projected life span, and the understanding it could all end tomorrow.

After discussing many options with Jay and her family, we went ahead with a treatment plan and she went home, to follow up in two weeks to gauge her response. She was still quite tired and tremulous, but had a slightly more optimistic outlook.

Unfortunately, I rotated off of that service before the follow-up appointment and didn’t get to follow up with them. But I’ll never forget those moments of hope and connection with this horrifically grief-stricken young woman and her family.

I’ll remember those mornings and afternoons in a cold hospital room when, as the med student – not the resident or attending physician – I became the person who could offer an extraordinarily important type of therapeutic treatment that no or few others in our 3.3-million-person county could offer. And where a struggling young woman, ten years my junior, and who had tragically lost most of the physical gifts we take for granted, gave me the greatest gifts of all – the chance to connect and bond with another person, the chance to process my thoughts and learn from a patient for whom I was providing medical care, and the feeling that I was maturing from a medical student trainee into a doctor and a healer.

I will always cherish those times when, in a busy and sterile hospital environment, a group of humans gathered together to help each other deal with the challenges of this gift called life. Thank you, Jay.

David Carlson is a fourth year medical student at UC San Diego School of Medicine. He is one of 19 students nominated by his peers to the Gold Humanism Honor Society’s class of 2019.  

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Thank You is an Understatement

By Ian Simpson-Shelton, MS4

Dear Dean Kelly,

Dean Carolyn Kelly, MD

I sat in your office unsure of my future. You were patient, calm, and collected while I sat there crying thinking about a new career path. However, you never let that dwindling flame die. You gave me a new sense of hope and encouraged me to continue chasing my dreams.

I am forever grateful for the opportunity you gave me and the day I heard your voice telling me I was accepted into medical school is still one of the happiest days of my life. That excitement only heightened when you told me one of your close colleagues had offered me a position in PRIME-HeQ. When reflecting on that moment, I still get emotional because I was on the verge of having another opportunity swept away from me. First, it was my mom. Then, it was my baseball scholarship. Then, my favorite aunt. Soon, I thought it was going to be medicine. Yet, something I understood was that from each process I grew and I think you knew I would grow from that point.

Dean Lindia Willies-Jacobo, MD

When I arrived on campus, you and Dr. Willies-Jacobo – another one of your colleagues that is going to depart UCSD – were the mother figures I needed at a time of uncertainty. We never spent an extraordinary amount of time with one another, but the two of you always spoke to me with a smile on your face. That’s all I needed to feel welcome in a very unfamiliar place. And, as I grew as a medical student, I truly came to understand how superhuman the two of you were.

You both taught classes, saw patients, sat in on several meetings, ensured medical students had everything you needed within reason, and most importantly kept your door open for everyone. I will never meet two women so influential to my life outside of the women in my family. I have to admit something though. I have stolen from you both. I stole your charisma, your calm demeanors, your willingness to lend an open ear even when time is scarce, and most importantly your desire to see the next generation of medical students succeed.

Ian Simpson-Shelton, soon-to-be MD

I am writing this because I want you both to know that I am forever grateful for your work at UCSD. I am thankful to have been students of such powerful, influential, intelligent, and compassionate individuals. If we as a student body can be as half as great as you two were, I guarantee we will be successful change leading physicians. It has been a privilege being one of your medical students and I wish you only the best moving forward.

Ian Simpson-Shelton is a fourth year medical student at UC San Diego School of Medicine. He is one of 19 students nominated by his peers to the Gold Humanism Honor Society’s class of 2019.  

 

When We Dream of Patients

Gilbert Williams
Visionary art by Gilbert Williams, https://www.facebook.com/gilbertwilliamsgallery/

By Shanon Astley, MS4

As with all writing published on Stories in Medicine, locations and names in this piece have been changed.

I met Mr. M after his second code blue. My team was on-call and surgery had been consulted. He was obtunded, intubated and bleeding internally following a myocardial biopsy. He was also young. His 5 o’clock shadow overlay jaundiced skin and his abdomen swelled with his and transfused stranger’s blood. Medical staff surrounded him, keeping him alive with tubes and lines while chatter of how to save him filled the room.

He would code a third time before coming to the OR. I stood at his table, scrubbed in, with suction in hand. By then, his face and limbs had been covered and all that was exposed was his hard and swollen abdomen – made orange by the PU surgical film. The incision was made and eight liters of blood erupted. As a medical student your overwhelming hope is that you are never in the way, and your best hope is that you are useful. I found middle ground between the two by scooping warm blood clots out of the field.

He had a liver laceration, which by no small feat, the surgeons were able to repair. With his liver and bowels abused too much in one day, it was decided he would be packed and closed later that week. The OR cleared out, Mr.M went to the ICU and with that, the pulsing electricity in the room fizzled out and time slowed. My resident asked for help spotting the blood splatters that the surgical gowns failed to protect against. Then I left to join the second case my team was on, and the day continued like any other.

It was hovering close 8pm, when we went to check on all our post-op patients. In a dimmed ICU room, a trauma-surg attending evaluated Mr.M. His pupils were fixed, dilated and devoid of pupillary reflex. A tap of a glove finger showed his missing corneal reflex. I listened to the attending and resident discuss the significance of these findings while my thumb nervously flicked back and forth over his right index finger. He felt cool to the touch, despite being buried under blankets.

That night I had a dream about him. Not how I had known him, jaundiced and unconscious with a belly full of blood – but in the way I wish I had. Moving around his hospital room laughing – he was having a conversation I couldn’t hear, with a family I never met. He gestured wildly as if telling a story, his face bright with life. I had overheard he had an ex-wife and daughter somewhere in the hospital, maybe that is who was in the room with him. Would they ever see him like this again?

I woke unsettled, thinking about Mr.M and what would happen. I carried those questions with me on rounds. When we arrived at his bedside, my resident told me his brainstem functions were present today – it was likely the anesthesia limiting his response. There’s not really a word for how I felt – relief, but something else. It was like standing at the door of a plane about to sky-dive with no parachute and then finding out you didn’t have to.  Nothing prepares you for when you almost lose a patient – and for the feelings that build up but then become inappropriate to let out. What do you do with them?

I struggled with those emotions. This was the best possible outcome, but still I couldn’t shake the weight of the moment. I felt its heaviness like a second set of scrubs – with me in every surgery and patient interaction, pressing down just enough to remind me it was still there.

Later in the week he returned to the OR and my team closed his abdomen. We signed off on his care shortly after. A few days later when we were no longer following him, I learned that as they weaned his sedative his extremities moved in response to pain stimulation. This would be the beginning of a very long journey of recovery for him, but it seemed like he was moving in the right direction.

Even though Mr.M was no longer in our care, I couldn’t stop my thoughts from returning to the dream I had. I don’t know the person he is when he is awake. I don’t know who his ex-wife and daughter are. And I don’t know what it is like to lose a patient. I do know that when I thought I had, my mind yearned for the opportunity to know the kind of person Mr.M was.

I can’t say how many times I had let my mind wander while retracting during surgery, or how many patient interactions I may have cut short so I could make sure to finish my notes. I don’t know if I missed out on opportunities to learn who my patients are as people. What I did learn from my patient, despite us never speaking, was a reminder of something I came into medical school innately knowing, but somehow lost during my third year rotations. The art of medicine isn’t puzzling through chief complaints, or knowing the most current guidelines or first line treatments. It’s in the small moments, when you learn your patient has a dog, or is a high school history teacher who traveled the world, or loves murder mystery novels, or has had trauma you can’t begin to imagine. It’s in sharing peer-reviewed publications with them because you know they have an inquisitive mind, in grabbing their hand and squeezing it to let them know you’re there, and in respecting how vulnerable they are.

When I dreamed of my patient, it wasn’t about the medical interventions necessary to save him – it was to understand who he was before his illness defined him.

 

Shanon Astley is a fourth year medical student at UC San Diego School of Medicine. She is one of 19 students nominated by her peers to the Gold Humanism Honor Society’s class of 2019.  

At Second Sight

By Meera Reghunathan, MS4

As with all writing published on Stories in Medicine, locations and names in this piece have been changed.

Le Sommeil - Dali
Le Sommeil (Sleep) by Salvador Dali, 1939. Dali described this painting as “The act of sleeping was a monster sustained on the crutches of reality”

The first time I came face-to-face with a pedophile was nothing like I expected. At first sight, the gentleman was in jail uniform, a demented old man with disheveled hair and beady eyes. He leaned on his walker as he hobbled in, putting his bagged breakfast aside so he could comfortably sit. Through steel grey vertical bars, he looked up at me. As soon as I met his aged, sunken eyes, a shiver ran down my back. I saw him see me and recoiled, resisting the urge to run out of the room. The words from his victims’ statements flashed in front of my eyes. I felt an indescribable disgust, my stomach boiling thinking of this man’s wrongdoings.

I saw a predator. I saw a monster.

What I saw built a lens by which I perceived the rest of the encounter. Thoughts flashed through my head, thoughts that felt righteous in the moment.

“Why are we wasting our time with this guy? He deserves whatever he gets.”

“Mental illness? This guy is sick and twisted, and is making a choice.”

“Why does he deserve our compassion, when he doesn’t give compassion to his victims?”

“He donates to charities to cure cancer for kids? Does he realize how twisted that is?”

The interviewing psychologist continued to amaze me, an ocean of calm, methodically interviewing the pedophile before us. Before I knew it, the interview was over and I, the observer, was still caught in a storm of negative emotions towards the patient.

A sense of unrest lingered with me. Later that week in a morning meeting, an attending psychiatrist asked if I had any interesting cases to discuss. This was the first patient to come to mind, something about him still unresolved in my mind. The ensuing discussion was profound.

“You exhibited negative countertransference”.

I learned that the emotions I felt towards the patient have a label in psychiatry, although the concept applies across many fields: countertransference. This patient exerted an influence on my conscious and unconscious feelings, and without proper recognition and resolution of these feelings, optimal health care could not ensue. Before this man had even opened his mouth, I had formed an impression of who he was and what I expected him to say. My walls were up before he said hello.

“Aggressors were often the victims”

How easy to forget the vicious cycle that feeds the darkest parts of our society—poverty, abuse, and crime. A child’s sense of “right and wrong” is crafted by the social and physical experiences he or she attains throughout childhood. My attending elaborates, “this doesn’t make it okay to be a pedophile, but…”. But you can’t help but have your heart ache for someone when you see the flash of the helpless kid they used to be, the kid whose norm was abuse.  

“Pedophilia is a mental illness.”

Like most mental illness, pedophilia is not a choice. It represents a complicated intersection of genes, environment, and neurology. In fact, the despise that much of American society holds towards pedophilia contributes to the counterproductive ways that criminal justice and mental health systems address this mental disease.

“Mental illness is defined by our societal and cultural norms”

It was not easy to zoom out of my societal and cultural norms and see the diversity of experiences that exist in this world. My attending reminded me that there are entire societies where pedophilic behavior is considered a norm. This was not offered to justify such behaviors, but to imply something much bigger – that judgment does not play a role in compassion. It is not our burden to determine right and wrong, but it is our privilege to show humanity without discrimination.  

Reflecting on these lessons, I realized that my journey towards compassionate care has a long way to go. It was stunning to introspect and realize I had a mentality of “giving to those who deserve it”. I enforced an expectation that the recipient of my time and skills be “worthy”.

But compassion has no place for judgment. Humanism isn’t something we get to pick and choose and give to “deserving” people. I want to see the best in people and aid them in their darkest times. We are neither the judge nor the jury, we are the givers, and that is a beautiful thing.

Henry David Thoreau may not have been referring to medicine when he said “It’s not what you look at that matters, but what you see”, but I can think of no field in which this mindset is more important. I have the honor and privilege of being in a healthcare profession, where my duty will be to improve the lives of those I care for. I must learn to see with compassionate eyes and know that I am looking at a human who deserves excellence, empathy, and respect.

So, please allow me to start over again.

The first time I came face-to-face with a pedophile was nothing like I expected. At second sight, the gentleman was in jail uniform, an elderly man suffering from dementia, with disheveled hair and sad eyes. He was an aggressor and a victim. He was a man plagued by his own demons. He was a man who suffered from mental illness. He was a human.

____

Meera Reghunathan is a fourth year medical student at UC San Diego School of Medicine. She is one of the two winners of the 2018 Gold Humanism Honor Society essay contest. 

Not Another Cirrhotic

by Evaline Cheng, MS4.

As with all writing published on Stories in Medicine, locations and names in this piece have been changed.

“It’s not what you look at that matters, but what you see.” – Henry David Thoreau

Statue
Statue of man. Source: Addiction Hope

I stood frozen, staring at the man on the hospital bed. This was my first night on call during my medicine rotation at the VA, and I was in the emergency department to evaluate and admit a new patient. “Another cirrhotic,” I was told. On my way down, I carefully recited the stigmata of cirrhosis in my head: jaundice, ascites, asterixis, among other physical manifestations. We had learned about cirrhosis in our pre-clinical years, and I knew what those words meant. Yet none of that had fully prepared me for this encounter.  

His face was yellow and gaunt, both temples and eyes sunken in. “Mr. V,” I said as I snapped back from my initial shock. He grunted.  

“Mr. V,” I called out again, louder. His eyes rolled back into his head as he mumbled in reply. Did he even know where he was?  

His feet hung off the bed. His limbs were cachectic while his belly protruded as if he were hiding a basketball under his jacket. I introduced myself and explained what was happening. As I attempted to take a history, he occasionally answered with bursts of phrases before his gaze and attention trailed away. In the physical exam, I held his arms up and watched as his hands rhythmically jerked back and forth. He seemed to have decompensated cirrhosis with signs of hepatic encephalopathy, which indicated severe liver failure.  

From the pieces of my history and his chart, Mr. V was a 31-year-old veteran with alcoholic cirrhosis, surprisingly young for his state. He also had a history of drug abuse and had been taking methadone daily. I was not surprised to learn that he had been in the emergency department before. As a former EMT, I realized that the emergency department had an unfortunate reputation as a revolving door for patients who lacked resources. The alcoholics, cirrhotics, and drug users were expected tenants among those rooms. Yet when I left the hospital that night, I could not shake the image of Mr. V lying on the hospital bed, his body visibly deranged with disease. How did someone so young end up with severe cirrhosis? I was frustrated that he had continued to return to the hospital in the same, declining state. What else would this admission accomplish? There was no cure for his cirrhosis, and he was not eligible for a liver transplant. He would be labeled as “another cirrhotic.”  

Over the next days, I watched as Mr. V responded to our treatments and slowly improved. We removed 6 liters of bright, yellow fluid from his abdomen with a paracentesis. By day two, he was conversing clearly and asking me for more string cheese. His anxiety, tremors, and sweating from opioid withdrawal began to subside after I tracked down his methadone clinic and confirmed his dose. He even liked the taste of lactulose, which was helping to clear his hepatic encephalopathy. While I was optimistic about his improvement, I was reminded that this was the same cycle as his prior admissions for cirrhosis.  

By next week, Mr. V was nearly recovered and it was almost time for his discharge. When I bumped into him in the hallway, he stood taller now, one hand carrying the bag of urine draining from his catheter. He seemed cheerful as he said, “I’m going out to the rec deck for a smoke.” “Would you mind if I joined you?” I asked.  

We sat face-to-face on the outdoor patio as I reviewed his progress and updated Mr. V on the plan for upcoming discharge. Then, I paused, wondering if my next question would be too personal. “May I ask… how did you get to this point?” To my surprise, Mr. V began: He had graduated early from high school and enlisted in the Marines, where his drinking began and escalated. After multiple deployments, he relied on alcohol and drugs to self-medicate for PTSD, and his addiction continued into civilian life. He was divorced with 2 young sons, including a 9-year old with autism. He was a Christian, and he had started going to methadone clinic daily. I marveled at his insight as he said, “I know that I don’t have long to live. I regret my choices, and my biggest regret is knowing that my sons won’t have a father.”  

I held back tears as I walked away. Mr. V had been the stereotype of “another cirrhotic” with his cycle of admissions and substance use. Yet, I did not consider how his personal struggles had led to this point— that trauma from his service and years of inner turmoil cumulated in his condition. Could there have been more opportunities to intervene before he deteriorated? I was frustrated that his decline had not been prevented. At the same time, I cried for the loss that his sons would experience and for the magnitude of his regret.  

In asking Mr. V about himself, I was trying to reconcile my shock at seeing a young man, not much older than I was, with severe disease. In the process, I learned that he was motivated by his role as a father. We laughed at stories he shared about his boys, even though he did not see them often anymore. For his family’s sake, Mr. V wanted his end-of-life to be peaceful, and later that day, I helped him start an advanced directive to clarify those wishes. By setting my judgements aside and listening to Mr. V’s story, I began to see him as another human being instead of “another cirrhotic.”  

On his day of discharge, I saw Mr. V in the hallway again, his thin frame towering over a walker. He saw me and smiled, “I guess I’m out of here now.” I complimented his tie, mismatched and slightly too long. This was not his first hospital admission, and the odds were that it would not be his last. But as I watched him push the walker along, I hoped that he would make it.

 

____

Evaline Cheng is a fourth year medical student at UC San Diego School of Medicine. She is one of the two winners of the 2018 Gold Humanism Honor Society essay contest. 

Building Trust after a History of Systemic Abuse

By Naeemah A. Munir, MPH

A physician draws blood during the Tuskegee Syphilis Experiment, c. 1953

I. Blood Transfusion

As the clock approached noon in the internal medicine resident workroom at Hillcrest Hospital, I eagerly awaited to hear a stimulating lunch talk, and to enjoy the free food!  Before lunch, my intern asked if I wanted to observe him consent a patient for blood transfusion. Although I wasn’t directly following the patient, I joined my intern for the consent.

A typical consenting process may take 1-5 minutes, but this was not a typical patient interaction.  The patient was in his mid-60s, with stage-4 colon cancer, and had been  transferred from a skilled nursing facility (SNF) to the emergency department for an upper respiratory infection.  The results of the respiratory pathogen nucleic acid amplification test indicated that the patient had a parainfluenza infection that was spread by droplets during coughing or sneezing, and thus was placed on droplet isolation precautions.  He was confined to a single bed, enclosed by glass doors, and healthcare workers were required to wear gowns and masks upon entry to his room.

During the consent process, the patient began to express his concerns regarding his hospital stay and questioned his placement in confinement. My intern patiently and empathetically addressed the patient’s concerns, which mainly surrounded his placement in  a SNF after being in confinement.  As a 3rd year student, I quietly stood in the corner and observed the 30 minute tense conversation.  From my observations, the patient felt trapped, caged, like he was being experimented on; he was not aware that his infection required this level of confinement.

After my intern had addressed his concerns and educated him on the plan of care, we reflected on the encounter and thought of ways to ensure that the patient felt cared for and aware of the continually evolving plan of care and discharge placement.  I concluded that the patient had developed a mistrust of everyone involved, healthcare providers as well the healthcare system in general.

The patient’s terminal condition, lack of patient autonomy during droplet precautions, and the rapid progression of care definitely contributed to the patient’s apprehension.  However, although we aren’t certain that race played a role in this scenario, we would be remiss not to acknowledge the history of deceit and experimentation that certain populations have experienced. The patient was African American.

II. Beyond Tuskegee

“It is a mistake to attribute African Americans’ medical reluctance to simple fear generated by Tuskegee Syphilis Study, because this study is not an aberration that single-handedly transformed African American perceptions of the health-care system.  The study is part of a pattern of experimental abuse, and many African Americans understand it as such, because a rich oral tradition has sustained remembrances of pain, abuse, and humiliation at the hands of physicians.” (1)   

Everyone knows about Tuskegee, right?  You may have learned about it during a medical humanities class in college or if you conducted human subjects research and paid attention to the online CITI training.  But in medical school, we do not have any formal training on the topic or other instances of unethical coercion of physicians; nor do we learn how the rippling effects of this recent history influence our relationships with patients of color.

I recently learned more about the Tuskegee/Syphilis Experiment, when I was reading Medical Apartheid by Harriet Washington.  The book provides a detailed historical account of the interaction of the health care delivery system and people of color.  Before Tuskegee, during the antebellum period, Black slaves were used as clinical material for physician researchers.  They were sold, kidnapped, and murdered, and their graves exhumed to supply medical schools with clinical material to further medicine.  Physicians such as Dr. J. Marion Sims withheld known and available anesthetics from Black patients while he tested gynecological surgical procedures.  When Sims perfected the vesicovaginal fistula repair, he administered anesthetics to White women. (1)

The Tuskegee Syphilis Study is the longest and the most infamous- but hardly the worst- experimental abuse of African Americans. It has been eclipsed in both numbers and egregiousness by other abusive medical studies.” (1)  

Such acts include the eugenics nature of the development of Planned Parenthood, providing or coercing minority and low-income individuals to receive contraception in order to better the American population by decreasing the Black population.  In the 1970s, many Blacks believed birth control to be a government ploy to eradicate blacks, comparing it to genocide.  Or in the 1990s, when a research institute received ethics review approval from Johns Hopkins University to evaluate cheaper lead-abatement techniques in low-income, minority housing units. Although the information provided to parents implied that the study was protecting children from lead, the researchers encouraged landlords to rent known lead apartments to families with young children.  Some children’s blood-lead levels increased fourfold during the study and researchers withheld this information from parents. (1)

Why is this history relevant today and to this patient interaction?   Because, as Washington stated, these atrocities are a pattern.  The pattern existed in the mid 19th century, when a physician decided to amputate a slave girl’s leg without considering other conservative treatments, as though the decision to amputate should be weighed differently according to a person’s race and class. (1)   And the pattern exists today: Blacks are two- to four-times more likely to receive limb amputation compared to whites–independent of comorbidities and insurance status–and are less likely to receive revascularization or wound debridement prior to amputation. (2)

III. Medical Mistrust

The physician-patient relationship may be compromised when medical mistrust is present.  When patients have mistrust they may feel uncomfortable in health care settings, fearful of health care professionals, doubtful of the intentions of diagnosis and treatment.  Individuals from communities of color that have been historically marginalized typically exhibit higher rates of medical mistrust. Current research has demonstrated that the influence of medical mistrust materializes in perceptions of provider communication regarding medication adherence and uptake of preventive services such as vaccinations and cancer screenings.

Among diabetic patients, individuals with greater mistrust had worse perceptions of provider communication. (3)   Mistrust predicted lower medication adherence among African American men living with HIV. (4)   Black Americans are more likely to go to emergency departments than outpatient clinics for primary care, compared to White counterparts. Mistrust accounted for racial differences in primary  source of care (emergency department vs. primary care clinic) between African-Americans and whites.5   Medical mistrust has also been studied among college-aged, racial and ethnic minority women.  Women without established primary care physicians and women who reported difficulty communicating with providers had higher mistrust scores.  Additionally, women who had not received the HPV vaccine had higher rates of mistrust compared to vaccinated counterparts. (6)

IV. Conclusion

As I reflect upon this patient’s interaction and the medical history of experimentation and abuse, I wonder what role, if any, medical mistrust played. A recent meta-analysis demonstrated that the majority of quantitative studies found negative associations between higher rates of mistrust and lower colon cancer screenings rates.  Additionally, among African American men, fear of experimentation and intrusiveness of screening methods were unique themes regarding mistrust and colorectal cancer screening literature. (7)   Without trusting relationships between physician and patient, patient interactions can be very frustrating and may contribute to further bias among providers towards ‘difficult’ or non-adherent patients.  What are medical schools doing today to address the persistent ripples of our profession’s past?   Conclusions from the majority of mistrust literature call for cultural competency training and policies to create equitable and safe spaces for African-Americans.  But does our cultural humility training include historical medical mistrust and how it influences health care delivery and outcomes among minority populations? How can we regain the trust of those that we have wronged?

References
UCSD SNMA Black History Month Movie/Reading List

Appreciate Recs

By Scott Nomura, MS4

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As with all writing published on Stories in Medicine, locations and names in this piece have been changed.

This past year, BEEPs and bzzzzs sometimes interrupted my talks with patients, the former from my pager and the latter from my watch, alerting me of a new text or email. To my chagrin, I could not silence my pager. But I often debated whether or not to put my watch to sleep: would the patient consider it disrespectful if I didn’t? Would it be best for my own privacy? Maybe it would startle someone and trigger an event? Ultimately, I chose not to touch it. And I’m glad I didn’t.

Watch: “Move! 3721 steps left”         //         Patient: 8 year old girl

“Lauren, what are you doing? Sit still, the doctor needs to listen to your heart.”
“Mommy, his watch told me to move!” Lauren continued to wiggle along the length of her bed, like a snake with a checkerboard grin, with little bits of applesauce peeking out.
“Lauren, please? You look like a worm.”
“It’s ok, I’m your pretty worm, Mommy…Mister, are there other watches like yours? I want one, but yours has cooties already.”
“Of course there are! Maybe your Mommy or Daddy can get you one for being so good?”
“Umm…I don’t know. Daddy used to be rich, but now he’s not.”
“What happened?”
“He married Mommy,” Lauren giggled.

Watch: “noReply@aamc.org”         //         Patient: 72 year old man with dementia

Current and recent 4th year medical students applying to residency programs know the nervous excitement when receiving an email from this sender. If the contents relay good news (an interview invite), the scramble to sign up for an interview date begins, and you might see a classmate run “to the bathroom,” phone in hand, with ERAS/Thalamus/other interview scheduling software open. If the contents are less ideal, there may just be a quick glance at the message, a pause, then a slow slide of the smartphone out of sight. Mr. R noticed me in this situation, and though he usually spoke off-topic on account of his dementia, this time he shouted a perfectly-timed statement:

“THE MICROSCOPE WAS INVENTED BEFORE THE TELESCOPE!”

After a quick bedside Wiki search, I was astonished to find that most historical accounts do agree that the microscope was first built in 1595, while the first telescope was invented in 1608.

“How weird,” Mr. R’s neighbor said from a nearby bed. And with all the cosmos towering above mankind, it is interesting that minuscule building blocks may have attracted our magnified eyes first. Yet the more the fact stewed in my mind throughout the day, the less “weird” it seemed. Perhaps especially amongst medical students, minds can get lost in minute details and forget the proverbial big picture: the well-being of both the patient and themselves. Medical school is a satisfying time of exponential growth but can also be constricting at times, a simultaneously expanding and collapsing universe. With so much to learn, it’s easy to forget about life outside of medicine if not for gentle reminders like the outburst from Mr. R. I thanked him for helping me remember what was important, hoping he had enough clarity to receive the gratitude. As I walked away, I could faintly hear once more, “How weird.”

Watch: “Incoming call: Mom”         //         Patient: 62 year old man, waiting for hospice

This patient noticed I ignored my Mom’s call while our team talked to him and later expressed his displeasure. As a former writer, he addressed this issue with a poem about his own relationship with his mother. With his permission, part of it is shared below:

“…I always hung up saying, ‘I’ve got to go, I’ve got to go, I’ve got to go.’
Until finally the place to go was home,
And face the face I had disowned, thrown
Away to ‘To-do’s’ of tomorrow,
‘I love you,’ ‘Happy Mother’s Day,’ ‘Are you okay,’ all delayed.

You were there for my first steps,
I should have been there for your last,
To catch you before you collapsed
Under the wait, too much to bear
Atlas, at last time to rest.

I filled a fountain with liquid lament
Collecting, cradling pennies for my wish
Of connecting once more by cord to you.
I would give it all back, for one minute.
Please, to amend my one regret?

Take my arms so that I may feel your embrace,
Take my eyes so that my tears can flow freely,
Take my ears so that you may hear, ‘I miss you’
And leave me deaf to ignore those words,
‘Darling, I have to go.’”