Wake up call (revised)

“Sometimes there’s nothing more we can do,” my attending physician warned me as I sat in her office after rounds. We were talking about to her about the seemingly insurmountable battle my patient “Jane” was fighting in regards to her health. Jane was homeless and living out of a hotel with her children and grandchildren. She was wheelchair-bound from multiple amputations due to a rare illness caused by an allergy-like reaction to nicotine. Her health was further complicated by heart failure, high blood pressure, depression, narcotic abuse, and nicotine addiction. Over the past year Jane had been in and out of the hospital and non-adherent with her medication and follow up. She was recently fired by her home health service for lack of communication and refusal of services. Her survival easily be measured in months, and she wasn’t even 50 years old. It didn’t take a medical education to see that stable housing and strong social support were necessary for her health care, and she needed more than just pain control and medical stabilization.

So back to “Sometimes there’s nothing more we can do,” a comment from a physician for whom I cannot overstate my respect, but with whom I completely disagree. I selfishly chose medical school over other healthcare work because of the power and social capital that an MD can wield in terms of social activism. Jane’s story further reminded me of need to use that voice to speak truth to power. Nine days out of ten she was joined in the hospital by her daughter and two grandsons. The small hospital room had become their most stable home. On hospital day three, I took her grandson up to the seventh floor of the hospital to play cards and because he wanted a view of the new Vikings stadium. So I took this homeless 9 year-old Minnesota boy up to look at the stadium, which he’ll most likely never afford to enter, that Minnesota state and local taxpayers paid approximately 498 million dollars to build. So again I disagree, I believe that there is something we can do for the roughly 10,000 homeless people in Minnesota, over 3,500 of whom are children. For starters, we can house our neighbors with our taxpayer dollars instead of spending it on football. These numbers should make you sick to your stomach. The cost of this one stadium, let alone the tax breaks, equals to almost 50,000$ per homeless Minnesotan.

Lawmakers argue that they’re investing in the future, which will in turn bring more money back to the state. However the numbers don’t back this up. A 2007 (Culhane et al) study found that the cost savings of housing homeless patients in Hennepin County was over 100,000$ per patient per year just in healthcare costs. Not to mention savings due to reductions in HIV incidence, jail bookings, and school costs. It should enrage you that instead of spending money on entertainment and leisure after taking care of our vulnerable people, we spent half a billion dollars building a stadium that statistically (when looking at other comparable stadiums and cities) will not recuperate its costs. A paper from the International Association of Sports Economists showed a strong consensus among economists that stadiums are not worth their price and that the benefits they bring don’t match their costs. Furthermore, a new Taxpayer Alliance report showed correlation between public subsidization of new stadiums and lower medium incomes and higher poverty rates in those same cities.

The responsibility of this ridiculous situation is on every one of us. It’s on us every time we talk about, support, or glorify football in its current iteration. We can’t stand by anymore and blithely support through our words, dollars, views, and actions a sport that destroys the brains of the men who play it and bullies weak politicians out of taxpayer dollars. Because it’s a fucking sport that doesn’t matter and the costs are too high. Every once in awhile, the veil needs to be pulled back so we can glimpse our collective insanity. Grown men in fancy suits sit next to each other on TV and talk seriously about other grown men playing ball games. There’s nothing inherently wrong with this, and it would be nothing more than kind of pathetic if we lived in a society that didn’t have homeless and hungry children, poor public education, rampant gun violence, and pervasive discrimination regarding race, gender, sexuality, and religion. But all of these things do exist, so we need to re-examine where what we stand for as a society.

Before finishing my rotation in Medicine, I spent 3 weeks caring for Jane who, like I mentioned, was living with Thromboangitis obliterans (Buergers Disease). Buergers is a devastating illness in which your body has a more or less allergic reaction to nicotine that causes your small blood vessels to fibrose, leading to rapid loss of extremities to gangrene and amputation. The first time I met Jane she was sitting up on her bed when I walked into the room, crying and asking for pain medication. Her right leg was amputated below the knee, all five of her toes were amputated on her left foot, and she had open draining ulcers on both legs and where her toes used to be. The sour smell coming from her ulcers was something I would get used to over the next three weeks. We started her on IV antibiotics and began to treat her pain with opiates. Her pain was a complicated soup of Buerger’s disease (the nicotine causes pain crisis), open wounds, edema and inflammation due to heart failure, and opioid tolerance and addiction.

I began to quickly learn more about healthcare than I’d learned in months of medical school classes. Medically we were managing congestive heart failure, Buergers Disease, pain, hypertension, and COPD. Emotionally we were managing depression, narcotic and nicotine addiction, and anxiety. Socially we were managing homelessness, dependent children and grandchildren, poor follow up, and medication non-adherence. And personally she taught me about interprofessional collaboration, managing my own expectations, and the absurdity in the idea that physical, emotional, mental, and social medicine can be separated.

On the morning of hospital day two I ran into Jane being wheeled out of the hospital by her 9 year-old grandson at 7:30 am. This was ten minutes after having a half hour conversation with her about her illness and the dangers of having even one more cigarette. Nothing I could do in that moment would stop her from going outside to smoke, not even a promise of tea and a backrub. Later on that night, I realized that I was angry with her. I was angry because she woke up a nine year-old to take her outside to smoke, angry that she couldn’t do what seemed obvious, angry that children had to suffer for the mistakes and illnesses of adults, angry that she didn’t do what I wanted her to do. This was a manifestation of my own weakness.

I need to let go of my own need for control and just be the best doctor I can be. I need to redirect my rage toward a system that methodically discriminates against against poor, immigrant, female, and patients of color. I need to sublimate that rage into care and love for the patient in front of me. The relationship that Jane and I developed over her three week stay was complicated but rich. I began to understand that beneath the pain, amputations, and medications, she was just like any mother trying to do the best for her little clan. To the embarrassment of both myself and her daughter, she mischievously tried to marry us off, and I was reminded that I’m still a young man working for a grown woman who has a lifetime of knowledge and experience.

Her hospital course was rocky. Some days I came home inspired after seeing over a dozen brilliant people from different specialties (hospitalists, care coordinators, social workers, nurses, cardiologists…) all working hard towards a shared goal of getting Jane and her family back on solid ground. Other days I’d stop by her floor only to hear someone bitching cattily about her, find out she’d taken her whole family outside to smoke at 3:00 am, and see her sitting in bed sobbing, snowed with opiates, and begging for more pain meds while her two grandsons fought over a cell phone in the corner of the room.

By hospital day eighteen however, she started to turn a corner. She had diuresed enough fluid that her legs were less edematous and therefore less painful, and she was requesting less pain medication. She was also nine days cigarette free. Then came the shattering news that a routine ECHO showed that her idiopathic cardiomyopathy had lead to an 11% ejection fraction (normal is 55-70%). This meant that every time her heart squeezed to pump blood to the rest of her body, it was only able to squeeze out 11% of the blood from her left ventricle. Jane was now faced with an entirely new and pressing death sentence that had nothing to do with her lifestyle or choices.

We discharged her from the hospital with improved pain and controlled heart failure. She was given a comprehensive education regarding her illness, and coordination with social services for housing and home health. Furthermore, she had a nicotine cessation plan and was eleven days without a cigarette. As a team we decided to hold off on broaching the subject of palliative care because forward-thinking and medication adherence might be her best palliative option. At the end of the day, Jane isn’t a character that exists to teach me lessons, she is a flesh and blood human being that tragically exemplifies our society’s twisted values, both good and bad. Furthermore her story should serve notice for us to re-examine what we support with our words, dollars, actions, and to remind us that we live in the same city as a homeless woman with multiple amputations and terminal congestive heart failure living in a hotel while supporting her 2 children and 2 grandchildren because she can’t afford stable housing.

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2 Responses to Wake up call (revised)

  1. Sonia says:

    Thank you for this powerful (and well-written) piece.

  2. Rick Cousins says:

    I have to admit, Collin, that reading this manifesto drew a tear from my eye. I love a appreciate your worldview.

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