Heartbroken

Tears fell down their cheeks. There was a long pause. “My heart broke and I’m just having trouble processing that,” the patient said. They’d been hospitalized for a heart attack several months earlier. I was seeing them at a primary care visit long after discharge. On paper they were recovering well, but they didn’t feel that way. They felt broken.

This interaction resurfaces in my mind periodically because it shows a side of illness that isn’t often seen in the hospital (where I’ve spent most of my time training). This patient had experienced an acute illness (heart injury). They had recovered their functionality. By medical definitions, they were a success story. Yet, they were miserable. How could that be?

In medicine we organize diseases into buckets with specific treatments and endpoints related to the organs affected by each disease. For example, this patient had a disease of the heart which might include endpoints like their ability to tolerate exercise or their heart rhythm. These endpoints are a simplicity required to synthesize something as complex as the human organism. However, as this story shows, looking at only specific endpoints can lead to missing things related to the illness that aren’t listed as clear endpoints to track. In the case of this patient, the heart is connected to the brain which is an organ of personality, mood, and feelings (among other things). While the functionality of this patient’s heart met all medical endpoints, their mood/feelings were severely affected by the experience of surviving a heart injury.

This patient’s experience reminds me that the diagnoses we make and interventions we do have lasting impacts on patients. Remembering this motivates me to provide information and support that I think will empower patients in their processing of what happened to them while they were hospitalized. I often wonder what conversations this heartbroken patient had with their care team while they were in the hospital recovering from their heart attack. Was there anything that their care team could have done differently to lessen the patient’s distress after discharge or was the patient’s feeling of heartbrokenness inevitable? I’ll never know the answer.

With this patient’s experience in mind, I try to ask myself if there is anything missing or left unclear before I discharge a patient. Healthcare is far from perfect (it’s quite broken actually) yet, even in a broken system, we can choose to communicate and help as best we can.

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Listening in Medicine

This patient was always cheerful. Despite approaching a month in the hospital. Despite extensive injuries for which they required multiple procedures, surgeries, and a long course of antibiotics. Every time I checked in, they had a visitor, were listening to mass, or were simply doing life things.

One day when I stopped in, the patient was different. Still as pleasant as ever, but their cheer was guarded. I noticed that their voice was heavier. That their eyes were drooping at the edges. Their smile seemed more effortful. “Is everything okay? Are you okay?” I asked. In the minutes I was with the patient, I asked these questions periodically. Interleaving with the normal questions about signs and symptoms and physical exams I needed to do. I’ve learned that if you create space for things that haven’t been said to be said, sometimes patients share what’s bothering them and you can do something about it.

I paused as I was preparing to leave and asked one more time if the patient was okay. They started crying. I waited. “It’s just I haven’t seen my children. I miss my children,” the patient said. I’d come to learn that they had two young children who they hadn’t seen since their admission. They video called them but, obviously, that wasn’t the same as seeing their children and giving them hugs.

Since COVID, hospital visitation policies have become more restrictive. There are reasons for these restrictions, however the unintended consequence is patient social isolation which is bad for patient mental health to put it simply. At the time when I was seeing this patient, the hospital I was in was not allowing children to enter the hospital as visitors. Rules, though, usually have exceptions. I spoke with the nursing staff, as they steward hospital floors, and they were able to arrange for the patient to see their children.

This patient interaction reminded me how listening is critical in medicine. The hospital is a difficult place to have a good conversation as patient. The hospital is confusing and foreign to most people; there are unintentional power differences that exist as medical knowledge and understanding are uncommon among those who didn’t study medicine; there are many faces with different roles in the hospital so it’s impossible to keep track of who is the right person to ask for what; and the hospital is busy and short-staffed, so healthcare workers are doing their best but they are always running behind. Given these barriers to communication, the burden falls not on the patient but on their care team to ensure that time to hear patients’ needs is made. To do this doesn’t necessitate longer patient interactions, necessarily, but it does necessitate listening for more than reports of a fever or bowel changes.

It can be hard to listen for things that don’t directly relate to changing a patient’s care plan. Yet, patients are more than carriers of disease and, therefore, to best support them in their journey to better health we in healthcare must listen to all ailments. Sometimes we can lessen a burden and sometimes we can’t. Arranging for a parent to see their children after weeks in the hospital is something we can solve easily. I was glad I was able to help this patient see their children, but I wondered how long the patient had suffered from missing their children. Perhaps, if one of us from their care team had listened more carefully earlier, the patient wouldn’t have had to wait almost a month before seeing their children. To me, it seemed unreasonable to add the burden of missing loved ones to this patient’s burden of healing from an accident that had almost killed them and injuries that would likely change their life. Being sick is hard enough; let us in healthcare not forget the human things, like social supports, that can help make healing less daunting. 

Windows to the Soul

I looked into the eyes of a patient for brief moments when they opened their eyelids before falling asleep again. Their eyes were like wells, but there was no sparkle in them like there is in a healthy person. The patient had a bacterial infection of the blood that had attacked their heart resulting in a large vegetation (collection of bacteria and other gunk) on one of their heart valves. Pieces broke off this vegetation, traveled through the blood vessels, and seeded infected clots in the patient’s lungs and spleen. That wasn’t all though. Their body was so inflamed some of the proteins in their blood were destroyed, consumed, or their production reduced. At first, the patient needed transfusions of red blood cells and platelets to survive.

In other words, the patient was sick. They were not just sick, their chance of death within 30 days increased by 16% each day their blood had bacteria in it according to one study.1 Their chance of death was about 40% by another estimate.2 It took us about a week of antibiotics to clear the infection from the patient’s blood, but that wasn’t the end of the patient’s need for antibiotics because of their heart infection and septic clots. They would need at least 6 weeks of antibiotics and likely several procedures and surgery to fix their heart.

I looked into the patient’s eyes each day, hoping to see a sparkle there that would suggest they were awakening from the depths of illness. I hoped and yearned to meet them rather than just examine their feverishness. I was rooting for them. I root for all my patients, but this patient’s eyes were so empty I knew they needed my thoughts more than the other patients I was caring for at the time.

It would take over a week, but one day the patient’s eyes shone with the flame that I think of as the soul, that spark of life. The patient was here with me. They could tell me their name and what was going on. They were awake! How the weeks ahead would unfold could not be predicted. In medicine, we don’t have a crystal ball that tells the future any better than a meteorologist can forecast the weather 10 days out.

My rotation would end before the patient was close to healthy enough to leave the hospital. They were sleepy when I last saw them because they were recovering from their first heart procedure. I touched their shoulder briefly and looked into their eyes. They were so strong and so brave. I reminded them of this and of how much they’d healed since we met. I told them to hang in there. It wasn’t much, I knew, but it was the best I could offer as I prepared to join a different medical team.

In the hospital, we often meet people at the worst crossroads of their lives. We do our best to help them navigate to a destination of better health, but we often don’t get to see where our patients end up after we care for them. We must be comfortable with unfinished odysseys. So, to conclude my telling of this patient’s story, the last time I saw the patient with the wells for eyes, their eyes shown with the brilliance of victory. I will remember them by that brilliance.  

References:

1. Minejima E, Mai N, Bui N, et al. Defining the Breakpoint Duration of Staphylococcus aureus Bacteremia Predictive of Poor Outcomes. Clin Infect Dis. 2020;70(4):566-573. doi:10.1093/cid/ciz257

2. Kuehl R, Morata L, Boeing C, et al. Defining persistent Staphylococcus aureus bacteraemia: secondary analysis of a prospective cohort study. Lancet Infect Dis. 2020;20(12):1409-1417. doi:10.1016/S1473-3099(20)30447-3

The Moments We Have Together

I would think of her often after we met as I hurried down the hospital walls. I always hurry down the hospital halls…rarely because I needed to hurry, usually just because it’s nice to stretch my legs. Sometimes the memory of her bright eyes would shoot across my mind as I opened the electronic health record system to work on different patients.

She had come to the hospital with a stroke. I followed her during the few weeks after she was diagnosed, during her acute recovery in the hospital. I met her on the medicine floor and then wandered the hospital until I found the rehabilitation center wing where she was moved one night.

After the first day when I conducted a thorough history and assessment of the patient, my visits were just “social visits” – the term for checking in with a patient or their family for the singular purpose of offering support rather than providing a medical update. She hated the hospital and visiting hours started late in the morning. I’d visit her before her family could be with her to help pass some time until they came.

Strokes cause a range of outcomes. Her outcome was good; long-term she was a little weak and a little off balance but still sharp as a tack. Strokes are injuries to the brain. In the first week I followed her, she was very depressed. Strokes can do that. I sat with her in the morning as she described her terrible dreams. Flashbacks to her childhood. She had been a Jewish child in Nazi territory. She described hard times. Her husband had also been in that situation – he had lost his whole family in the concentration camps.

As our days together continued, the patient talked less about WWII and more about her family in the US. She talked about how wonderful her children were. How hard it was now that she was old and her friends were dying. When you get old and people start dying, she told me through her stories, there are fewer people who remember your life experiences. Fewer people who truly know the world you knew.

We chatted about the hospital food. The boredom of sitting in a hospital bed. How playing cards with her children was nice, but barely passed the time. As I got up to go, she’d say, “Come back tomorrow.”

I went back until my school schedule sent me to clinics rather than the hospital. Medicine and the hospital are busy. Healthcare is frustrating and terrible sometimes, even often. When I find myself falling into the pit of work that is any job but especially a job that involves dealing with people and clunky systems all day, I push myself to pause and remember why I went into medicine. The weeks this patient was in the hospital she was my light. I like to think I also helped take the edge off her hospital stay. Seeing patients through sickness is the highlight of medicine in my opinion. Not all stories end as well as hers, but all hospital stays can be made better by our shared moments.   

Pride and the Human Experience

The patient was muscular and wore coordinated clothing, both uncommon for someone admitted to the hospital. One of my tasks was to deduce his age from observation; the moment I saw him I knew it’d be hard. He was one of those mystical people who appear much younger than their age.

There are a series of questions we always try to ask our patients in the hospital. They seem silly, but you’d be surprised how often patients can’t answer all of them. “What’s your full name? Where are we? Why are you here? What’s the date?”

This patient made great eye contact. He sat on the edge of his bed with his spine perfectly straight. He used his hands when he spoke. He said his name purposefully. He stated our location without pause.

“Why are you here?” I asked.

“I’m here to evaluate the hospital systems. I have a solution for your computers,” the patient said.

I looked at his wife who was sitting in a chair a surprisingly far distance from the hospital bed. She grimaced. “He’s been fixated on the idea of attending a business conference recently. I can’t seem to get him out of it.”

The neurology exam unfolded (an exam looking at nerve, brain, and muscular function). On the nerve and muscle function part the patient did well. He was nibble and coordinated. He was very strong. Especially for his age. However, his cognitive score was significantly below the normal level – low enough that despite our newness to testing cognitive function the other students and I were confident that he had scored low enough to count for a diagnosis of a memory disorder. How long had his memory been declining?

As I and the other medical students interviewed the patient, his wife interjected ever-so-politely when he denied he had any health concerns. She’d taken over multiple tasks to manage their household, slowly. Now she managed all the finances and everything else too. She mentioned that the patient would fly into a rage for almost no reason which was unlike the man she’d been married to for many years. He’d always been a calm man. He’d always been a connector and a successful man. He’d always been so well organized.

His memory and brain function were poor enough that the man could not complete all his activities of daily living (things like paying bills, buying groceries, among other things). This memory loss and brain function decline had been going on for over 6 months. In other words, the patient met the textbook definition of dementia.

~

The other medical students and I told the physician we were working with what we’d learned about the patient. The physician requested only the information that would change his management of the patient. So, in the end, we shared very little about what we’d learned about the patient. What makes medicine interesting (to me) is the story; however, diagnoses and treatment mostly depend on the distilled details of signs, symptoms, tests, and timeline.

~

The physician examined the patient. “What would you do if your house was on fire?” the physician asked.

“I’d go outside,” the patient said.

“Then what?” the physician asked.

“I’d communicate with people I know,” the patient said.

“Like who?” the physician asked.

“Well, I know some firefighters. They’re friends of mine. I’d probably talk to them,” the patient said. The room was silent for a few seconds. The physician watched the patient, but I watched the wife. Most of us would call 9-1-1 if our house was on fire. I hope.

~

When we left the room the physician said, “You didn’t tell me how bad he was!”

“You only asked for the information that would change your management of his condition,” I said.

As we discussed the patient in greater detail, the patient’s wife came out into the hall to show us a picture of her husband when he was still working. In the picture, he was dressed sharply and similarly to the physician I was working with. We all nodded and smiled. She looked at the picture with love, but her body was tense.

~

The vision of the wife holding up the picture of her husband stuck with me. I hoped she knew it was going to get harder. It was possible that her husband would have angry outbursts more frequently. It was certain that his memory and ability to function would decline. And it was unlikely that even that picture of him as a younger, healthy man would propel her through the remaining years of her husband’s decline if she didn’t have help. Dementia takes a toll on the loved ones of the person who is slowly losing their brain. There is no magic pill or procedure to fix the brain when it breaks in the way that causes dementia. Dementia is a progressive disease with a fatal end where, along the way, the person who began the illness is not the person who dies from it. Dementia reduces our ability to function and, also, transforms our personality.

Despite the frustration of memory loss, one thing that this patient illustrated and continues to strike me about people with dementia, is that they keep their pride much longer than many other aspects of their original personality. The vision of this patient sitting tall and answering our questions confidently floated in my mind next to the picture of him when he was younger. Why is pride something the brain clings to even as other functions are lost?

The patient’s wife noted that his outbursts most often occurred in moments when he realized he was forgetting things. In the beginning stages of dementia, many people are aware that their memory is going. I thought about how this patient’s wife must struggle to strike a balance between supporting the autonomy of her husband while also knowing he could not grasp the intricacies of complex concepts and decisions like he once could. When she looked at him, she seemed reflective. Perhaps she was recalling the grand times they’d had together. She also looked tired likely because their life together was more difficult at the time she brought him to the hospital than it had been previously.

The longer I stay in healthcare the more I come to realize that illness, while very personal to the person experiencing it, is not only an individual journey. For patients lucky enough to have friends and family at their side, their disease impacts their family and friends in profound ways. For patients alone in the world, their illness impacts those who care for them whether it be their primary care provider or their care team when they land in the hospital. And much like pride which clings on even as the brain becomes weak, the odd realization that illness is often a social experience lingers in my mind as a dark side of the human experience.

Medicine of the Mind

“It’s a privilege to learn their stories…really get to know people,” he said when I asked for his nugget of advice for us students as we continue our medical school journey. “In what time you think you have, try to know them [patients]…exercise your privilege.” Before we get into the weeds, let me clarify what he meant as this quote is just a piece of a longer conversation. By “privilege” he meant the honor of getting to meet patients and having the opportunity to hear their stories. By “exercise” he meant take the time to be a good doctor which includes getting to know people’s stories.

This piece of advice came from a retired psychiatrist who, as rumor has it, retired several times and each time his patients convinced him to come back to practice. The way he carried himself reminded me of my late grandfather – tall but not imposing, with straight white hair that covered just enough of his forehead, and a quiet voice. But more than how he carried himself, his curiosity caught my attention. He was an old human, an old physician at that, who the week before he gave the above advice had comfortably engaged in conversation about pronouns and transgender care. He was a physician who listened to learn when I offered a rudimentary definition of “nonbinary.” I’ve met many a young person, with far fewer years to settle into old ways, who showed less interest in uncovering the nuances of the human experience.

“Really get to know people.” His words made me hopeful because they showed that even at the end of a long career there are physicians who still have a passion for the human story as much as I do at the beginning of the Doctorhood Quest. Being only 5 weeks into working in the hospital as a medical student, I have a long way to go before I can offer advice to students. But, for now, challenge accepted good sir. Let’s see how I do in the coming weeks and years at uncovering stories while also learning labs, diseases, medications, and all the other factoids that will help me reduce symptoms and cure disease in the patients I see.

Loneliness Lab

It seems fitting to talk about loneliness now. Some things are opening but the COVID19 pandemic continues to close many social spaces and requires people to not only stay home but to physically distance themselves from those who live outside their home. It’s been interesting to watch the Facebook and Instagram evolution of my online network. The pandemic started with cutesy mask photos, ebbed into anger, and now includes random questions to spark online conversation and exercise videos.

There are those who have been gravely affected by the financial toll of losing work or of illness during COVID times. But setting more extreme circumstances aside, I’ve noticed that those who seem most impacted by social distancing are those who are very extroverted, those who live alone, and those who were lonely before the world shut down. I think for many, the slowed pace of life during a pandemic has unleashed an uncomfortable amount self-reflection. I imagine many are grappling with questions like: How do I occupy myself? And, how do I feel connected to those I care about if I can’t see them?

I think the silver lining of widespread feelings of loneliness during mandated social isolation is understanding. You or I may feel isolated today, but it took the extreme circumstances of a pandemic to get us there. Many are unluckier. They feel isolated daily, on normal days, or for long stretches of their lives. Many of those people are our family and friends. I think the pandemic has shown us that people feel loneliness at different thresholds and endure the feeling in varying ways.

We can observe the evolution of our own feelings during COVID, especially if they are new feelings, in the hope that they will provide greater insight into the feelings others in our lives may have at different times.

Thinking about my career as a physician and my role as a member of a community and family, I will always know and meet people who are lonely. I think it is easy to forget how common loneliness is. It is not something that is always worn outwardly and loudly like a football jersey. Often it is subtle. And while we might not be able to drive the loneliness someone else is feeling away, each of us can be an encouraging force for others. We can be present to listen when someone else needs to share. We can be a connection in their lives.

The nice thing about pandemics is they usually end. For many, the end of this COVID shutdown will be a return to normal. It will be easier to travel and socialize again. The feelings of isolation and stress and sadness many feel now will magically lift when social distancing is no longer required for public health. But, for those who feel isolated for other reasons, the struggle will go on. You and I should remember that. Not to be negative and pessimistic but, rather, to remain in touch with people beyond ourselves. Loneliness is a powerful force. If we are feeling it now for the first time, we should take note. We should take note so that we might be more empathetic later when we are not feeling isolated and someone in our network is.

When do we need heroes?

In movies and books with simple plots heroes have capes and big muscles. They drive decked-out cars and never compromise their morals. They are always good. The problem is, creatures like that don’t exist.

Heroes do exist though. They just aren’t as straight forward and flashy as blockbusters make them seem. We don’t usually notice them. As the saying goes, “A job well done goes unnoticed.”

Heroes use their precious time in selfless acts. Those acts need not be large, but sometimes are. Heroes don’t seek acknowledgement. They don’t expect thanks. They are driven by something within. They are driven by a belief that the world can be better and that helping others is worth some personal loss.

Being a hero always comes with a price. The price isn’t always steep, but sometimes it is. No one is always a hero. None of us are like superman.

Everyone has opportunities to be a hero at different points throughout their life. Those who become heroes step up and take those opportunities to help others more often than they let the opportunity go untaken. Those who can’t act on those hero opportunities aren’t bad—they’re just human.

Few can dedicate most of their time to others. Life is more complicated than that. Personal need is real. That’s why it’s amazing when someone goes out of their way to help others often. Being a hero doesn’t come with a job title. Becoming X doesn’t mean you are selfless. Becoming X may afford you more opportunity than becoming Y does to be selfless. Some jobs are centered around helping others, but only doing the job well achieves that goal. The bigger point is that we all can be heroes. Regardless of what profession we do or place we live or activities we undertake, choices are made every minute of every day in terms of how we act and treat others. What makes some people exceptional on the hero scale is how often they take a loss and lend a hand.

I think it is important to be grateful for acts of kindness and service. Not just now, but always. I also think little acts pile up. It’s worth noticing small acts just as it is worth acknowledging something large like a life saved. We can always thank those who are kind. We can always strive to be kinder. Times like these, when so many folks are sick, make it easier to notice how others are sacrificing for us or our family. But, truth be told, people are heroes every day. Just like someone could use our help always.

The circumstance of COVID19 remind us that we can make a difference in other’s lives. But, the need for heroes will not end with COVID19, just as it did not begin there. COVID19 has given us a window to view our inner strength. It has made us pause and observed those around us. I think hard times renewed our reverence for helping. Let’s keep the value of others sacred long past when the pandemic fizzles. Because, when the pandemic ends, all of life’s other troubles will continue.

People Get Sick – Some Rise and Some Fall When Faced With That Reality

As the COVID19 pandemic continues, it’s brought out the different sides of people directly and indirectly in my life. I continue to be impressed by the many folks who fearfully, yet generously, show up to work at the grocery stores, the hospitals, and the other businesses of service that we can’t live without and can’t be run remotely. I am equally surprised by those who had the opportunity to help and instead fled. Fear is powerful. It makes those who consider themselves generous selfish.

I’ve seen great efforts of humanity from handmade protective equipment to online hangouts bringing people who haven’t talked in years together. I’ve seen folks put on fitness, meditation, and medical school classes virtually—I’m amazed how much can be done over online video chat it a pinch.

I’ve also seen people lash out at people who are sick but not dying, in anger and fear. It is easy to blame those who are sick for their illness and label them as a threat but, like everything in life, it isn’t that simple. It’s worth remembering that pandemics are not the work of individuals; they are the work of collectives. What is more, viruses and other microbes are perfectly simple and wonderfully complex. Nothing made by humans can be quite as clever as they are, so no need to find human scapegoats to blame for a disease they could not have made.

The idea of not knowing if someone has an illness you can catch is scary. But, that’s the nature of many infectious diseases, not just COVID19. And while many of us born in America do not necessarily think of potentially deadly infectious diseases often, that is a luxury people in different parts of the world do not have. It helps give perspective to remember that millions of people die of infectious diarrhea and malaria, for example, each year. And their plight isn’t one the larger world community has committed to ending. It will go on…perhaps as long as humans exist.   

We are strained by social distancing today. Yet, we carry on because we have a sliver of hope that by limiting our interactions we can end COVID19. We believe that we can limit the number who die or get sick. As we hold on to these ideas, we should also remember that social distancing need not make us less compassionate for others. Protecting ourselves does not require that we compromise kindness. I would hope that we all see this time as an opportunity to discover creative ways to help those who are sick while also protecting those who aren’t yet. The infection count is not a numbers game of distant people we don’t know, it is happening right here, today, and to real people with families and a story. Just remember that those numbers you’re refreshing are humans. Don’t forget that, because if you do you just might become apathetic. We have a pandemic to end. It will take the actions of each of us to be successful. Stay engaged.

Why I Go Back for Each Shift

Not long ago, I walked into an emergency department room (a cube defined by some walls but mostly curtains) to place an IV. An elderly man was on the hospital stretcher. He was there with his son. I began my normal banter—introducing myself, explaining why I was there, and narrating what I was doing as I went. The man might have asked me about my name, about 30%-50% of patients do because it’s unique. He might have asked about my necklace, it’s a wolf and about 25% or so of my patients ask about it.

“I’m going to raise the bed so I don’t have to stoop,” I said. “I need my back for many years to come.”

The patient and his son laughed. “You know what you need, music. Do you listen to music?” the patient asked.

“Not here, it’s not the right place. But, I like to dance, so I do listen to music,” I said.

“My wife liked to dance. She died a year and a half ago,” the patient said.

“I’m sorry to for your loss, sir,” I said.

“We were together 60 years,” the patient said.

“That’s amazing! I don’t think I’ll be with anyone for 60 years at this point. Did you take her dancing?” I said. I maintained a jovial tone because he seemed merry when he mentioned his wife and dancing.

“I did,” the patient said. I looked down to find him crying. I paused and put a hand on his forearm. Giving him a squeeze. I’d recently visited my grandmother. A big part of our visit was discussing how my grandfather, who’d died 2 years prior, was still with us.

“How lucky she was to have you take her dancing! How amazing it must have been to have had so many years together,” I said.

“Sorry, I always cry when I think of her,” the patient said. He half-shrugged and looked away.

“It’s okay. She’s with us still and you’ll see her again, sir,” I said.

“I hope so,” the patient said.

“I know you will,” I said.

The patient and his son nodded. The tears ebbed. I placed the IV. All humans have stories. Sometimes they find space to share them when they visit us in the emergency department.