Telltale Hearts, page 8
Maintaining his intent stare, bayonet cocked, he asked, “Tuy Zhid?” (Are you a Jew?)
When my great-uncle didn’t reply, the Russian asked in Yiddish, “Zenen ir a Yid?”
When Aladar vigorously nodded, the Russian quickly looked left and right, winked at my great-uncle, grabbed the lapels of his long coat, and hoisted him up and out of the trench in what felt like one fluid, superhuman motion. Now out of the trench, in no-man’s-land, the Russian threw him to the ground and hugged and kissed him, telling him he would make him his prisoner and shelter him. Together, they soldier-crawled back to the Russian’s trench. In this way, my great-uncle spent the next eighteen months as a Russian POW, saved by his captor—a fellow Jew.
Twenty-six years later, Aladar was murdered in Auschwitz, the end result of a pseudoscientific movement that purported that Jewish blood was not only tainted but was toxic to the health of society and therefore must be destroyed. In the midst of the bureaucratic efficiency and human processing that culminated in the gas chambers, there was not even room for one Jew to save another.
INSIDE THE TRENCHES
Seventy-seven years after my great-uncle was spared by his landsman, saved by the culture of blood, our team was on call again. I was called to the ER at 3:00 a.m. with the news that the shooter with a fever whom we discharged five days prior was back, now in profound heart failure, with a dangerously slow heart rate of forty-four beats per minute and a high fever. When I approached him, he was sitting on the gurney, bolt upright, breathing at thirty-two breaths per minute. His wrinkled forehead was beaded with sweat, his face exhibiting a look of desperation. I was painfully reminded of the aphorism that “when the patient is sweating, so too should the doctor.” His eyes were wide-open, locked onto mine, like a suffering child looking into his parent’s eyes in disbelief. But when he was unable to respond to my simple queries and could not demonstrate that he was oriented to person, place, or time, it became apparent that he was staring less at me than at the unknown world visible only to the delirious.
Working as if in a fog, I placed pacemaker pads on him, pushed more IV diuretics, and rushed him up to the cardiac care unit (CCU), transferring his care to the more senior resident in charge of that unit. At 5:00 a.m., I was called by the CCU, who informed me that my patient had expired. Racked with potential guilt, I approached the senior resident physician in the CCU—who was completing the death certificate—and advocated that an autopsy be done. He soundly squelched my request, quipping that “these guys die all the time. It’s a no-brainer.”
At 1:00 p.m., eight hours after the death, I got paged by the microbiology lab: a new set of blood cultures, obtained by the ER during this second admission less than twenty-four hours earlier, were both growing Staph. aureus.
I was shaking. Filled with dread, I found a computer and logged on. I braced myself and scrolled back through the computer record to results from eight days earlier. In disbelief, I discovered that only one set of blood cultures had been obtained on the first admission. The second set of blood cultures that I had reported as coming back negative had never existed. Rather, they had belonged to the first nameless shooter we had admitted that day. I ran to the on-call room and buried my head in the pillow, exhausted, moaning.
We are born into a world where differences matter. A world in which we seek the comfort of the familiar amid the danger of variance. We are a species engineered to recognize difference and to defend against it. We are hardwired to protect our tribe, to shelter and nurture those who are the “us,” those from our common bloodline. But to be a civilized person engaged in service requires always being mindful of our inclination against the “other.” We must be vigilant so that our breeding and our socialization to neglect or do violence against the “other” do not dictate our actions. These protective and violent inclinations—always present—become dominant during times of stress, when we are threatened, or when our basic humanity is in jeopardy. Being human means favoring the culture of blood, yet being humane requires resisting this innate tendency.
It took me many months to disentangle the complex web of personal and systems issues that led to this death—including my own complicity. It took me some years to learn about and recognize the role that implicit bias played in this fatality, to realize that my marginalization of this man due to his race, his drug habit, his HIV status, and his insufferable suffering all led me to a place where I determined that he was less than human, that he was the “other.” It took me years to understand that this devaluing had dehumanized me. And that I needed to come to terms with what I had done to reconcile this act with my values and my beliefs regarding who I was and who I wanted to become.
CHAPTER 5
Man and Bird
In 1971, a British family doctor by the name of Julian Tudor Hart made an observation based on his clinical experience working in the National Health Service (NHS) in Wales. He cared for a geographic swath of patients that had been assigned to him, a population that came from low-income neighborhoods. He noticed that while he worked nonstop from 7:00 a.m. to 7:00 p.m. Monday through Saturday, his colleagues assigned similar-size populations in the wealthier neighborhoods took Wednesdays off to golf, were home by 5:00 p.m. and dined with their families, and had both Saturdays and Sundays off. Cross-trained as an epidemiologist and therefore skilled in recognizing patterns related to health and disease, he carried out a formal study of the NHS in London and discovered that this pattern was replicable across all of London’s municipalities and sectors. In essence, he discovered that doctors were far busier in low-income neighborhoods than in high-income neighborhoods both because of a much greater burden of illness in these neighborhoods and because of an undersupply of health care providers relative to this need. He first coined this phenomenon the inverse care hypothesis, and later, as the pattern was found to hold across the globe, the inverse care law. Tudor Hart’s law states: “The availability of good medical care tends to vary inversely with the needs of the population it serves. This… operates more completely where medical care is most exposed to market forces, and less so where such exposure is reduced.”
Physicians, nurses, social workers, and pharmacists who work in safety net settings in underserved regions are familiar with the inverse care law; we feel it in our gut. Always aspiring to reverse the inverse care law, we often feel as though we struggle like Sisyphus, pushing with all our might to roll the giant boulder up the mountain, only to witness it roll back down again and having to push it up again and again.
THE MAN
One morning in 2002, I entered my outpatient clinic, twenty minutes early for my morning session. The clinic’s waiting room was already filled beyond capacity: the elderly, the uninsured, and the disabled, all wedged together. The odor of unwashed clothes, soiled with layers of sweat and soured by urinary incontinence, mixed with the repugnant fragrances of cheap cologne and cheaper alcohol, came together to create a prototypical public hospital olfactory concoction. The smell of poverty, sickness, and neglect.
I carefully navigated through the already overcrowded waiting room, past the searching eyes and around the wheelchairs, and gravitated toward the back of the clinic, spotting the chin-high stack of charts that my medical assistant had obtained from the Medical Records Department and set up for my review. Volumes upon volumes of charts from the fourteen patients on my morning schedule that contained decades of visits, countless blood tests, x-ray reports, specialist consultations, vaccination records, and hospital discharge summaries.
Making the most of my prep time, I quickly leafed through any notable clinical events that had transpired in the interval between today’s upcoming visit and the last. I spent most of my pre-rounding time on Mr. Garcia’s chart, rereading my notes, reviewing interval data, and collecting my thoughts. A handsome and well-built, fifty-six-year-old, Spanish-speaking immigrant from Guatemala, he had spent the last twenty years working construction in San Francisco for a large, local construction company, as well as doing some side jobs as an individual contractor. Like 40 percent of our patients, he was uninsured. Because our city has a public hospital, I had had the privilege of caring for him for many years. Over this time, he had proudly shown me photos of the houses he had helped to build, the kitchen remodels he had done, and even a downtown high-rise he helped to construct.
The recent years had been less productive for him, as arthritis in his hands and knees had made it increasingly challenging for him to “keep up with the youth” and consistently put in the hours of hard labor required of the immigrant construction worker. He had to step away from some jobs, declined others, and—for his solo contractor gigs—he had been unable to deliver on time. He hadn’t accrued enough income to hire help and participate in construction jobs in a more supervisory role, and his lack of English proficiency had made it impossible for him to get his contractor’s license, further restricting his opportunities.
As I flipped through his chart, I recalled our prior visit. At that time, Mr. Garcia’s chief complaint had been fatigue—a profound fatigue that left him unable to walk long distances, a fatigue that hit him the moment he awoke, making him feel as if he hadn’t slept at all. Multiple potential medical diagnoses to explain the symptom of fatigue instantaneously peppered my mind. Yet before I fully gave in to them, I reminded myself that the most common cause of fatigue was depression. So, after eliciting more details on his fatigue and carrying out a quick review of symptoms related to organ systems whose failure could result in fatigue, I had gently queried him about his mood. He acknowledged that he was increasingly concerned about his ability to pay the rent for the two-bedroom apartment in the Mission District that housed him and his wife, their three children, and one grandchild while also needing to pay for food, clothes, and school supplies for the kids.
He then reminded me that he also had a family back in Guatemala, from a prior wife, and that he had become unable to send them the small amounts of money he had been sending them each month for two decades. He told me that things were beginning to look grim for him, that he wasn’t sleeping well, and that his arthritis was bothering him more and more, making it harder and harder for him to work. He felt caught in a cycle. He began to weep silently, turning his face away to shield himself from my witnessing his suffering. I too teared up, looking away and down to my chart.
After expressing my compassion for the situation in which he had found himself, my confidence in his ability to manage this challenge, and my commitment to do my best to help him get through this, I quickly explained the common causes of fatigue, including depression and anxiety, and ordered the routine blood work to evaluate fatigue (thyroid function tests, blood count, etc.). Since he was reticent to go deep with a discussion about a diagnosis of depression and any associated treatment options, I simply asked him to take the next few weeks to consider whether he would like to receive some professional counseling, and to let me know at our upcoming visit whether he felt he wanted to talk to me more about it and get some treatment.
As I continued to leaf through his chart, I was reminded that his blood work had been notable for a fairly profound anemia, one that could very well explain his fatigue. I read my note that documented the telephone call in which I had informed him of the anemia and instructed him to obtain additional lab studies just before our upcoming visit to evaluate whether he had the type of anemia caused by iron deficiency (which prevents the adequate production of red blood cells) versus a type caused by red blood cell destruction. The day’s visit would allow us to discuss the results of this second battery of tests and consider any further workup.
After we greeted each other, I asked him about his symptoms. He told me his mood and his fatigue were about the same, but his arthritis pain was worse, especially the pain in his back. I told him that I didn’t recall his arthritis affecting his back.
“Well, I guess it does now,” he responded.
He asked me about the most recent lab tests. Since these had not yet been filed in his paper record, I called them up on my late-twentieth-century office computer. While his anemia persisted, there was no evidence of iron deficiency. Instead, it appeared that his bone marrow was not producing new red blood cells at a pace to make up for the anemia.
As I interpreted these results for him, my brain interrupted my speech with an associative phrase: “Anemia and new back pain. Anemia and new back pain… anemia and new back pain.” The connection between these two entities led my mind straight to cancer. And while many cancers can spread to the bone, there was one that originates within the very progenitor cells of the bone marrow, taking over the space where blood cells are produced, and over time seeding themselves in many parts of the skeletal system, especially the spine. Known as multiple myeloma, this cancer is not curable but can be treatable. Treatment can prevent suffering and prolong life. Multiple myeloma can be detected with a blood test or a urine test and is confirmed with a bone marrow biopsy, a painful but definitive procedure.
“This back pain of yours, is it new for you?”
“Well, you know, I always have pains, but yes, I guess it’s kind of new.”
I told him we needed to keep looking for the cause of his anemia, and I ordered a spinal x-ray, another set of blood tests, and a urine test. I asked him to return in one week, squeezing him onto a schedule that was already fully booked.
THE BIRD
I finished my morning clinic at 1:45 p.m. As I exited the building and took a deep recuperative breath, glad that I had that intense flurry of activity behind me, my pager went off. It was the babysitter of my four-year-old twin boys. I called back. She was hysterical. I was unable to understand what she was trying to tell me, other than something about my son Eytan. My heart was racing. She couldn’t answer my simple questions. I directed her to put Eytan on the phone. A moment later:
“Hi, Daddy.”
Putting on my calmest voice, I said, “Hello, Eytan. What’s going on over there? Are you okay?”
“I think Dulce is sick. He just sits there on the bottom of his cage. He just stares at me. I took him out now. He’s in my hand. He doesn’t even fly away.”
Dulce was the twin of Guapo, my other son Gabriel’s parakeet. The twin boys and the two Guatemalan birds had been inseparable for over a year.
“I’m sorry, Eytan. We’ll figure it out. Can you put Yasmin back on the phone?
“Yasmin, everything will be all right. Just put Dulce back in his cage. I’ll call a vet and see if I can get an appointment. I’ll hurry home by 4:00. For now, please read some books with the boys, but in a different room.”
THE MAN
While Mr. Garcia’s x-ray was normal, both the blood and urine tests were highly suggestive of multiple myeloma. As always, he arrived promptly for his visit, and I shared with him my concerns. I told him that the next step was to submit to a bone marrow biopsy, a somewhat painful procedure that was done by our blood cancer specialists, and that if the biopsy showed that he did not have bone marrow cancer, that we would have to follow him very closely to make sure it didn’t develop in the future. But if it did show cancer, we would want to quickly start him on chemotherapy to prevent any progression. I acknowledged that this must be particularly tough to hear, especially since he had been grappling with his work and financial difficulties. He looked me in the eye and told me he was not scared and that he would do whatever needed to be done.
I gave him a firm squeeze on the shoulder and told him I needed to step out of the room to make a phone call to the cancer specialists to try to get him seen quickly. I looked at my watch; I was already thirty minutes behind, and he was only my second patient of the day. I paged the Oncology fellow, and a few minutes later, I got her on the phone. She told me we had to be quick because she was dealing with a very busy clinic day. After I shared with her the clinical scenario of Mr. Garcia, she informed me that their next available appointment was not for three months and offered to connect me to their clerk to get him that appointment. I calmly pressed her, as I had been through this dance before. First, they say no, then you kick and scream, and then they cry “Uncle!” and bend.
But she was different; she persisted with her hard line. Our dialogue escalated as I informed her that I was well aware that any delay could jeopardize my patient’s well-being and declared that it was unacceptable that he should have to wait three months to get a bone marrow biopsy and start treatment.
She flippantly retorted that I should “just send him to California Pacific Medical Center,” a chic private hospital up the road. Since we both knew that the uninsured are not welcome anywhere else in the city or Bay Area, I accused her of being stonehearted and demanded to speak to the chief of the oncology clinic. She told me she would pass my message on, that I’d get a call back at some point, and wished me and my patient good luck. I reentered Mr. Garcia’s room and told him, in as soothing a voice as I could muster, that I was still working on getting him a timely appointment, that he could go home, and I would call him in a few days with the date, time, and location.
Early that afternoon, I was called by the chief of the hematology/oncology clinic. She confirmed that, indeed, she had absolutely no availability before the three-month appointment I was offered. When I forcefully pushed back, she told me about the metastatic breast cancer patients, the lung cancer patients, and the advanced colon cancer patients who were also in line, how many of their patients didn’t speak English or didn’t have a home, which made care even more complicated and time-intensive, how their service was swelling beyond capacity, and how one of their oncologists just quit because of the working conditions. She too was dealing with an “acute on chronic” problem of inadequate supply relative to the demand. She suggested that if I had a genuine complaint about her clinic, then I should submit it to the director of the Department of Public Health and do it on behalf of all the patients that are in line, because the department held the purse strings.
