Heart Failure

One would expect that working in the emergency room would be a really cool job. In a rush of activity, experts think on their toes to save lives. It is medicine at its best:  maintain their airway by shoving a plastic tube down through their vocal cords, ventilate, apply 30 chest compressions, 2 breaths. Repeat. Until spontaneous return of circulation. But in the inner city ER you quickly realize there is much more to medicine than the exciting, fast paced, think on your toes medicine. Here in the second most segregated city in America, you are more likely to deal with a different breed of crisis. It requires a different kind of care.

When I tell people I am at the downtown ER for my final semester of nursing school, those who are even a little familiar with the place will make a face or offer a comment that shows they are both fascinated and disgusted: “You never know what can walk through the door there.” There is great variety of conditions, ranging from traumatic to just plain weird (i.e. “you stuck what, where?” “why are you streaking in the hall with your gown open in the back?” etc). You get the idea by spending a few hours walking the halls that the population can be quite challenging.

The social determinants of health, which the World Health Organization defines as the “conditions in which we grow, work, live and age,” are determining the fate of inner cities. If you are looking for the third world, stateside, you’ll find it here. The ER acts as a barometer of public health and policy efforts aimed at addressing these conditions, and the pressure is high. The odors alone tell a vivid story of a population that is not coping well with homelessness, poverty, and chronic disease. There is a nauseating combination of alcohol, marijuana, old socks, and infected diabetic ulcers. You see it most clearly here, that your likelihood of dying from a chronic illness depends more on your zip code, where you grow up, than the choices you make.

Since the Emergency Medical Treatment and Labor Act was enacted in 1986, ERs are prohibited from turning anyone away if they cannot pay. Now the poorest and uninsured use the department as an access point to fulfill a variety of needs. Unlike the nearby Trauma hospital, this ER treats more than life threatening conditions. It is more of a social safety net where people come sometimes on a daily basis to get needs met that are not being met elsewhere. They know they will never be turned away and they will probably be treated within several hours even if they come for high blood pressure or pregnancy tests. Some people are known to lie about being suicidal to secure a warm, safe bed, and clean socks for the night when the shelters are filled up.

The ER nurse, an altruist at heart caught in the middle of a broken system tries to do the right thing but is kept from it. She resorts to either blaming the patients she treats or blaming the broken system that perpetuates the patient’s disease. How does she stay true to her ideals while facing the threat of burnout? 

Meet Mr Jay

(Disclaimer: all personal identifiers have been changed for patient privacy. While the conditions are likely and have been true to my experience of many patients, they are fictional and non-specific. Any similarities are coincidental.)

I have met many patients that illustrated this problem, but I met Mr Jay on my first day orienting to the emergency room. As his name posted to the waiting room track board, the mood change in the department was tangible. As a student with immense amounts of freedom I was able to investigate why the nurses grumbled and the doctors visibly braced for impact.

Mr Jay is a small, middle-aged African American man who shuffles along with his eyes fixed on his feet, seemingly docile and quiet. But while he waits to be seen, he stands in the doorway of his room peering out from behind the curtain, scowling at the staff and threatening them. Naturally the hatred goes both ways, as he is well known for lashing out about how dissatisfied he is with the care he receives.

He is well known because he comes around a lot. He had a heart-attack a decade earlier. The progressive scarring on his heart has weakened the muscle so that it can’t pump blood around his body very well. For the past eight years, his lungs have slowly been filling up with fluid. His chief complaint is the same every day: shortness of breath

On my very first day in the ER, a seasoned nurse encouraged me to meet the infamous Mr Jay and listen to his abnormal lung sounds. Since I have limited experience with belligerence, and Mr Jay was in an especially sour mood that day, the nurse decided to go into the room with me. As we entered, the doctor was there discussing his medication regimen. She asked “have you been taking your water pill and blood pressure pill?” to which he replied,  “Of course I ain’t! They aren’t working at all. They don’t get rid of the water in my feet and I still ain’t breathing right.” She tried to explain that the medications only work if you take them consistently, but he acted very offended that she would suggest as much.

We approached and ask if he would let me listen to his lungs, meaning that he would need to sit upright for us; he exclaimed “would you just let me go at my own pace!?” He moved very slowly, maybe to spite us, but also maybe because he was truly uncomfortable with all the water in his lungs. I heard wheezes in the upper lobes and coarse crackles in the bases indicating of chronic bronchitis and pulmonary edema.

After we left the room, the nurse explained that this was the third time he visited this ER this week and the second time he had been at the hospital that day. According to his chart, he was at hospital on the south side earlier that morning. There are also detailed notes in his chart about his care plan. For example, the nurses should never give him socks, or any rewards whatsoever, including food. He was recently homeless, but his case manager set up a home for him last month which apparently he hates, because there “isn’t enough oxygen there!” Early in the mornings he leaves his house and wanders to multiple ERs and free clinics throughout the day, always with the same complaint: shortness of breath.

(Medical note: pulmonary edema is one of the most uncomfortable, often fatal symptoms, of poorly managed congestive heart failure. It feels like you are drowning in your own water, you can’t lie flat, and you can barely walk 50 feet before feeling immensely short of breath. Usually the discomfort can be reduced by taking a diuretic every day and eating very little salt. Diuretics need to be taken with food to prevent stomach upset).

Mr Jay is what ER workers call a “frequent flier,” or more technically, a “high-utilizer” defined as a person who visits the ER 11 or more times in 6 months. When members of the medical culture hear that term, they usually think “abuser.” Like the woman who checks into the ER daily with odd complaints, because she knows that if she does, the Medical Transport service is obliged by law to take her anywhere within a 15 mile radius free of charge. She often goes to the mall on their dime. But Mr Jay is atypical. He is no abuser, as I soon discovered.

Meeting with Social Work

Determined to understand the reason for Mr Jay’s daily visits, I decided to make an appointment with an associate who specializes in social care of high-utilizers: the ER social worker.

I did this because I felt that there is more to the story than that he is a grumpy middle-aged man with heart failure who uses the ER despite hating the doctors and nurses who try to care for him. He knows, and we know that all we can do is order the same tests as yesterday- always an EKG, IV, and lab tests. We can listen to his lungs and clear him medically for discharge. This is the routine. Always the doctor asks him to take his medications. But it is clear from his tattered clothing, the smell of marijuana, and his constant requests for a sandwich, that other needs are not being met. 

Secretly I hoped this meeting would resolve the moral distress I was feeling about his situation, and imagine how the hospital, how the community, could actually help him. There must be a reason he comes in, despite knowing we will not provide “comfort measures.” I am pretty much used to being told that my idealism will not fix anything, but I wanted to at least comfort myself with a theoretical solution so I could blame the right people.

I wrote out a detailed interview for the meeting to learn about the hospital’s particular efforts to address social determinants of health. But I did not carry out this plan because the social worker had an urgent meeting with a patient, which I discovered shortly was the infamous Mr Jay! The SW said I could sit in on this encounter if the Mr Jay was ok with it.

The social worker brought Mr Jay back to his office and ask him if a “friend” (me) could sit in on the meeting. Knowing that people who want to listen to his lungs is a trigger for him, I stealthily slipped my stethoscope into my cargo-pant-size scrub pockets. Thankfully, he consented.

The room was dimly lit and quiet. Mr Jay sat slouched over leaning on his knees. He spoke in short quick burst separated by long pauses during which he audibly gasped for air. Gradually, his humanity came into focus as I learned his story.

He abbreviated as if to save his breath. He explained in his own way that the reason he comes to the ER so much is to feel in control, which he has not had much of in his life. He was born in Arkansas and came to Milwaukee when he was 15 with his mom and his brother. His mom was a “crook,”  and “bless her heart, she gave me nothing and left me alone.” Both his mom and brother died two years ago, leaving him with no living immediate family in the area.

“I have no friends I like,” he said, “it turns out people just want things from you and leave when you can’t give ‘em. I have trust issues. I need people to respect me.”

The social worker asked him “what do you consider to be respectful treatment, Jay?”

“Don’t raise your voice and don’t get jazzy with me. That really sets me off. People just keep repeating the same things over and over and asking questions that concern them, but not me. It makes me angry. I’m gonna keep coming back here because I need to be treated right. I need something to change.”

“What needs to change, Jay? What is the feeling you hope that coming back here every day will get you?”

“I come here because I feel that someone I know might see me, someone might care and help me.”

“People aren’t caring for you in the way you think is right. So, do you think you play a part in this?”

“I know I’m stubborn. I get mad easy. I know I’m not perfect, and I don’t trust people. But honestly, I’m just in a bad situation and I need all the help I can get.”

We discovered very quickly that he had not eaten anything that day. It was 10 in the morning. In fact he did not even have daily meals he could count on because Meals on Wheels had apparently “cut him off.” He left his house around seven in the morning and came to the ER. Naturally when Meals on Wheels comes around, he was never home, so they just stopped coming. The SW implored him to stay around his house either in the morning or the evening so that he could get a meal and take his medications. He asked Mr. Jay to name a time that worked for him so he could close the loop and ensure the meal service was back on.

A Sick System

Nurses are presumably committed to an ethos of caring, what theorist Jean Watson defines as “the moral ideal of nursing whereby the end is protection, enhancement, and preservation of human dignity.” When it comes down to it, no matter what physical treatment we are giving you, our raison d’etre is caring. It is somewhat drilled into our heads from the cradle that the essential aspect of providing real bona fide care is seeing the whole person, including the spiritual, social, and emotional aspects that make them who they are, that makes their suffering what it is. Even if one wants to care in the ER, where the failures of the system are so blatantly laid bare, it can be very hard to do so.

As I prepare to enter the workforce, I can see the idealism of our first year of nursing school drowned out by a high dose of reality. Final semester classes in Organizations and Systems of Healthcare presumably teaching me about “leadership” only bring to light the colossal failures of the healthcare system to provide the caring atmosphere it promises to patients and caregivers. These classes make me feel small and powerless as these invisible, self-serving forces work behind my back to keep me from truly living my ideals. Systemic barriers stand between my intention to care and what the patient actually gets.

There are three major barriers that make caring so hard: An effectively absent public health system, a weak primary care system, and the staffing training on the job that poorly equips us to address the needs of the whole person. Why people keep coming back to the ER to get their basic needs met may be attributed to one of these three aspects that make it hard to care.

Public Health and Primary Care

Without getting into the complexities of policy-writing aimed at make our system work, I’ll recommend an excellent piece of journalism that shows how the piecemeal laws put in place by capitalism-driven politicians may risk losing sight of the end toward which healthcare strives.  Several studies by Bradley and colleagues have shown that both local and national governments that spend more on social services and public health have fewer medical expenditures per capita. This is an age-old truth that my grandma used to repeat to me almost daily: It is much easier to stay well than get well when you’re sick. I may go so far as to say cheaper and less traumatic too.

There is a great deal of literature advocating for new public health systems. But there is also so much stigma associated with socializing our health system, that this public health overhaul is a long time coming. We will know we have achieved a good system when acute care doctors and nurses are working themselves out of jobs by referring out to non-medical resources. For now, we benefit quite a bit from keeping people sick, or making them think they are. More monitoring, tracking, technology, consumption of healthcare goods comprises 20% of our GDP! A system that is incentivized to increased intake and revenues while simultaneously punishing high-utilizers for coming to a place mandated by law to care… A system that benefits by keeping people sick is a sick system.

Now that’s a dose of reality! As long as money matters and motivates, it seems that people will stay sick. It hits me like a blow to the gut every week: that sixth breathing treatment this week you are giving Mr Jay for his bronchitis means so little (to him) if his basic needs are not first met;  if he does not first have food or housing or support that he can rely on. These are needs that can theoretically be met outside of the hospital, but for which he keeps coming to the hospital to fulfill.

But hospitals are not equipped to do public health, we are equipped to do medicine. This distinction makes a world of difference especially as the ERs start to take the brunt of the chronically ill and aging population. If people can’t get care elsewhere, it makes sense that they come where they can get it. One study found that patients attempting to follow up with a primary care provider after a visit to the ER could secure an appointment within 7-days only 30% of the time, and this rate was even lower for Medicaid recipients. The low reimbursement rates by Medicare and Medicaid for this population does not afford ample financial incentive for doctors to provide primary care. Those who choose to do primary care inevitably feel overburdened by a large patient load and eventually work themselves out of a business. This culminates in patients using the emergency room for non-urgent needs: back pain, bug bites, constipation, strained muscles… Another study showed that many patients do not even know that primary care exists, or how to get it.

So we can get mad at people for “abusing” the system by showing up at the ER, or we can meet them where they’re at by giving them primary care! Unfortunately ERs are neither established nor equipped for this purpose either. Still, we are compelled by law to serve everybody. We have to give everyone something, even it is isn’t the right thing. So we draw labs, perform scans, give fluids and medications because we have to do something by God! But this same-treatment-for-everyone approach is not working very well because the same people keep coming back with the same problems. Surgeon-writer Atul Gawande argues that it is not so much about providing resources per se, but providing the right resources. Following the example of Jeffrey Brenner and associates, this means prioritizing social care and environmental and lifestyle risk assessment at the same time as addressing the physical need. This means literally going out of the institution into the community and addressing the issues that cause asthma (i.e. crappy housing), heart disease (i.e food insecurity), trauma etc where people live, work, and breathe.

Pointing to the important role of the community in health, a “public-health first” mindset fueled the 2016 legislation that allows ER physicians to write a prescription for housing for homeless patients rather than freeing a hospital bed for them. The health outcomes are still being analyzed, but I think both the system and patients may heal with more things like this. (Ahem, and save money, since that matters too).

Staffing and Training

So Mr Jay comes in and I want to care for him. What can I do about it? Every time I ask a nurse or preceptor this question, I am met with a shrug and a sigh. We all see the problem, but something else real and pressing is keeping us from doing anything about it. The most immediate barrier that effects nurses on a day to day basis is staffing and training. We have too many other tasks, and we have a very specific scope of practice. The role of the nurse in caring for social needs in the ED is not clearly defined in our schooling, and providing primary care is outside our scope of practice. Staff nurses aren’t actually trained for referral and followup. Whatever time is free to spend on being present to really care, is filled with a heavier patient load (often up to seven at a time assigned to one nurse!).  Again, this has to do with money–admitting more patients to the rooms, turning the hospital into a factory, leads to increased revenues.

Nurses have to deal with an impossible patient load, leaving so little time to care, to assess in depth the barriers to health that lead people back to the ER again and again. The patient’s chief complaints are always physical, but not only physical. It is evident that many of them are lonely, cold, hungry, and just in a lot of emotional pain. Their physical symptoms are real manifestations of otherwise invisible root problems. And nurses, bless their hearts, often have a “not my job” attitude about it.

Social work is like a beautiful holy force that moves like the wind in the background, unusually siloed from the more concrete “medical” aspects of care. Even after all this time, it is still unclear to me what all social work does. In the terms of Maslow’s Hierarchy of Needs, nurses are taught that there is the physical need, and then there is everything else (what social work takes care of?). There are five nurses on staff during the day, and three at night to address the physical crises. There is one social worker present at any given time, and only during the day, to address the rest.  When I asked the social worker what he thought nurses could do to help the high-utilizer population with complex social needs (since we outnumber him 7 to 1), he confessed he did not have an answer. The cop-out in my community health class was something like “request a social work consult.”

The staffing  ratio in hospitals is a problem felt by all, but one that makes clear what the real priorities of hospitals are. Unmet social needs are the unintended consequences of medicine’s good intentions to “heal the sick.” But the medical culture that silos social needs as “unrelated” or “not my job” is just making people sicker. Our priorities should match the real need, right? Perhaps what we need is a change in scope of training for medicine and nursing that aims, either directly or through interdisciplinary collaboration, to prioritize basic needs of clients before, or even at the same time, as devoting medical resources to treat their condition. Instead of nurses and doctors, what if we had more social workers and public health nurses?

Caring is our job, but sometimes we are kept from doing it. Doctors in Hawaii and other states have made it their job by advocating various “housing first” initiatives. And this is just one example. The social determinants of health are at their worst in the inner city and rural areas- food insecurity, housing, social support, safe neighborhoods and schools–these suffer in these areas, and so does population health. This is evidence enough that the physician (and I will add in here, the nurse) will always necessarily be, as Rudolph Virchow says, “the natural attorney of the poor,” whether they embrace that role or not. As long as we fail to embrace that role, the people we swear to serve and care for will continue to suffer.

Hardened Hearts

As a student, my position on the clinical totem pole is the lowest of the low. Yes, I empty a lot of bedpans. But I also have this strange and beautiful advantage. I have time to spare, to learn, and to care.

This advantage afforded me to opportunity to see Mr Jay in different light. From one perspective, he is a crotchety old non-compliant semi-homeless cognitively delayed disease who is easily aggravated and ungrateful for the help that is there for him. He is an archetypal “difficult patient.” This is how a broken healthcare system sees him, how burnt out nurses and doctors see him, how even I saw him the first day.

The advantage I had as a student allowed me to dive a little deeper into the situation where I discovered a completely new perspective.

Mr Jay, human being.

What I noticed in Mr Jay is what I imagined I would become if I had been abandoned on the street by my mother, left to fend for myself at 15; what I would become if I were subtly and grossly discriminated against every day for the color of my skin; what I would become if my chronic high blood pressure turned into a heart attack at 35 and progressed into heart failure; what I would become if the system who was supposed to help called me “difficult” and “non-compliant.” What I found in Mr Jay was essentially myself. What I saw that he needed was so simple, so easy to give.

At the end of my investigation, I found only myself and my profession to blame. People are driven into the healthcare profession where they find an outlet for their altruism. It is a profession that is devoted solely to other people’s good. We are challenged to discover for ourselves what we believe that good to be, then we are challenged to live it, sometimes in spite of the system.

The day after my meeting with the social worker and Mr Jay, I was working the triage booth with a seasoned nurse. At 9am, like clockwork, Mr Jay shuffled in. Just like every other day he was hungry, smelling like marijuana. To be honest, I felt immense frustration and distress and I almost cried. I thought, haven’t we been over this already, a million times!? Why aren’t you at home waiting for your meal? Instead, I smiled at him and asked what brought him in that day. He said, as usual, “shortness of breath.”

Mr Jay is so representative of how hard it is to truly care. The system is not solely to blame. He said it himself, he is a stubborn man. In his case, the resources were there for him, and it was up to him to make a choice. But old habits die hard, much to the chagrin of those who truly make the effort to help. You can imagine how seeing Mr Jay day after day watching your efforts to help go to waste would make you tired. You might begin to think “if he isn’t going to care for himself, why should I care anymore?” Hence the tangible grumbling when Mr Jay shuffles in.

It all starts with a healthy dose of outrage that arises from a heart true to its ideals. A good bit of righteous anger can be good for a soul. But, like the chronic stress in Mr Jay’s life turned his heart into a big scar that has now failed to pump his blood, chronic outrage that turns into moral distress and burnout can harden the heart against the good it first loved.

After working in this setting for a while it becomes apparent, as we are exposed to the worst of human suffering and injustice, that the value of caring risks losing its significance altogether. Hearts become hardened against the first nursing ideals we learn as baby nurses in school. You might even forget that initial feeling you got when you first helped someone to the bathroom and saw not only their vulnerability, but your own. After a while it just becomes the thing you do and you just put your head down and survive the day without breaking down.

The barriers to care not only exist in the system. Caring– and might I say, love, for they share many characteristics — hinges on our ability to keep ourselves open at all times to human fragility. Research on burnout in healthcare consistently shows that healthcare provider’s attitudes toward socially disadvantaged clients play a role in the client’s adherence to their care plan. The reason Mr Jay does not take his medications, besides not having food to take them with, could be that he associates that responsibility with the insensitivity of his physician. One study showed that these attitudes develop over time, that medical students have more positive attitudes toward treating the poor and homeless than do seasoned physicians. Hardening is a chronic process, and like many chronic diseases, it may be preventable. 

What we find in this profession is that the suffering that motivates us to care is precisely what threatens our ability to care in the end. It is love that drives us into this profession, especially into a job like nursing in the ER. But that is the mystery of this love. It is not love unless it risks becoming hardened against the thing it aims to love. What Mr Jay truly needs is someone to care, but who can (who has the time to!) take that risk day after day to encounter his suffering, and their own, and provide what he needs. 

As a system, we have a lot of healing to do. But I think it is dangerous to expect that healing to come from the top down. Perhaps the Catholics express this best: 

“No legislation could by itself do away with the fears, prejudices, and attitudes of pride and selfishness which obstruct the establishment of truly fraternal societies. Such behavior will cease only through the charity that finds in every man a ‘neighbor,’ a brother.” (Read the Catechism 1931-1942)

My mind naturally goes to the figures who affected culture through individual acts of compassion and care. People like, Florence Nightingale, Dorothy Day, and Mother Teresa, Oscar Romero.

The issue in the human heart, the lack of solidarity, is deeper than the culture, but is fed by it. This is our social sin, the sin we all must answer for. Will we say “I could not clothe the least of your brethren because my culture, my society, did not promote it.”? Saints always meet resistance.

In the end

Last night I had the most fun in the ER I have ever had. It really is a cool job. Fortunately I did not need to resuscitate anyone, but I did assess a patient who was in a car accident, triaged a victim of an alleged assault, and witnessed the doctors sedate a patient and put a dislocated shoulder back in its socket. The true fun I have, though, is making someone’s “worst day ever” a little less bad. I can be present in the extra time I have as a student to listen to their story. Soon, maybe, I can do more than that.

And as I near the end of school, with the letters RN after my name now, I am feeling less like a bystander each day. Consequently, I am feeling more and more personal responsibility for my patients and less justified in my outrage against the system and culture I find myself entering. My focus now is inward on what I can do to care for one person at a time, and hope that somehow that will make a ripple.

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