By ANISH KOKA, MD
It took some doing, but I had finally made it to Bobby’s home.
It was a rowhome tucked into one of those little side streets in the city that non-city folks wouldn’t dream of driving down. As I step in, I’m met by the usual set up – wooden steps that hug the right side of the wall leading up to the second floor. Bobby certainly hasn’t made it up to the second floor in some time. At the moment she is sitting in her hospital bed in the living room. The bed is the focal point to a room stuffed to the gills with all manners of stuff. At least three quarters of the stuff seems to be food. Cinnamon buns, Doritos, donut holes, chocolate frosted Donuts, crackers, Twinkies. The junk food aisle at Wawa would be embarrassed by the riches on display here.
Bobby weighs in at four hundred pounds, 5 foot 5 inches. She has a tracheostomy from multiple prior episodes of respiratory failure that have required ventilatory support. I’m here at the request of a devoted primary care physician that still makes home calls. I’ve looked through the last number of hospital stays. The last few discharge summaries are carbon copies of each other. Hypoxemic respiratory failure related to pulmonary edema complicated further by morbid obesity. Time on the vent. Antibiotics. Diuretics. Home. Return to the hospital 2 weeks later. The last echocardiogram done was 3 admissions ago. A poor study. Not much could be seen due to ‘body habitus’.
I sit on the side of the bed trying to acquire my own images of her heart. I talk to her as I struggle. Bobby is 58, the youngest of three sisters, and the only surviving member of the family. Her elder sisters died of respiratory complications as well. They both died with tracheostomies. The conversation is circular. The problem according to Bobby is the tracheostomy. Everything was fine before that. I explain that a prolonged period of time on the ventilator on a prior admission prompted the tracheostomy, and that the multiple recent admissions to the hospital that required a ventilator seemed to validate that decision. She doesn’t waver. Both her sisters died shortly after they got tracheostomies. Bobby thinks the physicians taking care of her sisters had a hand in their demise. “They didn’t care.” “We told them they were sick.”
The picture on the nightstand suggests Bobby was the smallest of the three sisters.
It doesn’t take much to get Bobby talking. Her favorite holiday is July 4th because she makes the family favorite tuna casserole, and her favorite niece, April, helps her with the casserole every year.
Meanwhile, the echocardiogram shows a large right side of the heart. Her pulmonary pressures are elevated, and she seems to be fluid overloaded. Review of her bloodwork from the hospital also strongly suggests her weight may be hampering her ability to expel carbon dioxide. She really needs to be on a ventilator nightly. In other more normal contexts there are additional diagnostic steps to take, but trust won’t be built in a day. She’s heard variations of these recommendations before. She is adamantly opposed to any other invasive tests.
But a small victory. She agrees on the higher diuretic dose.
Bobby is black. I’m brown. We hail from very different zipcodes. She clearly harbors a deep mistrust of the medical system. But I’m hopeful to make some inroads. It doesn’t seem to matter to Bobby that I’m brown, or that I was born in Delhi, or that I reside in a much different zipcode than her. At the moment, I’m just another caregiver in her living room.
I sense a thaw. As I pack up, she asks me when I’ll see her again.
Hopefully soon, Bobby.
Hussain Chalhoubi is in the office with one of his three devoted daughters. It’s a different daughter every week and I can never keep their names straight. I met him after he had suffered a stroke that leaves him frustratingly aphasic. He enjoys food and drink, and like clockwork would appear in my office in the early years frequently with swollen hands and feet days after a dietary indiscretion. He always had a sheepish look on his face as his exasperated daughters would tattle on him.
At some point I learned there was little point to piling on. Scolding only gets you so far. Instead, I asked him about Syria. Boy do those eyes light up. His family had fled shortly after Syria had been plunged into civil war.
I’m curious who he blames for the mess. Assad, the dictator who the US has held responsible? He vigorously shakes his head. His daughter chimes in.
“We are Christians.”
Not much more needs to be said. Assad may be the boogie-man to many, but he is an Alawite, a minority sect of Islam in a sea of Sunni Muslims that makes up the Levant in the Middle East. The rebellion against the Alawite Assad is of the behead-first-ask-questions-later extremist Sunni kind that scares the Syrian Christian minority much more than the ruling dictator accused of his own share of atrocities.
As the conversation comes back to the medical, he forwards through his daughter that he has been trying to flush out his kidneys by drinking copious amounts of water. I try to explain to him that his kidneys and his heart don’t function normally, so they can get overwhelmed.
Over time, he’s started to listen more. He doesn’t skip his medications, avoids drinking too much. He used to be in the office monthly, but now every 3-4 months for routine visits.
Serving patients, or populations?
It is now a rather quaint idea that outcomes for patients are best improved one doctor-patient relationship at a time. I understand the sentiment. For most patients ,the outcome is decided well before their encounter with me. Your zipcode seems to be a lot more important to your outcome than your doctor, and unsurprisingly a movement to address matters that have traditionally lived outside of the health care system has gained steam.
In an earlier era, the doctor’s mission was to recognize and manage diseases. Medical students were taught to hear the severe aortic regurgitation that was causing the progressive shortness of breath. The advances in the management of disease over the last half century have been nothing short of magical. Crack open a chest, arrest the heart, replace an aortic valve, bring the heart back to life. The power of medicine realized was to change the natural history of disease for the ill patient that arrived in distress seeking help.
And here the very reasonable human desire to address systemic inequities in society found synergy with a darker current of thought within medicine that felt the resources expended to care for the very ill are resources poorly spent. The focus, the theory goes, should be on preventing illness in the much larger healthy population. The scope of keeping the healthy well, of course, extends well beyond the medical, and puts everything in play. Sanitation, transportation, air quality, climate change, access to the means to pay for healthcare are just the start of a long list of priorities for those in charge. These programs need scarce budgetary dollars, and so it was only a matter of time after the government started paying for healthcare that politicians and the public health gurus they empowered to manage the health of the population began to voice their disdain for the care of those deemed “too ill”.
The tension here is that medicine’s greatest strides in the last half century have come in those with afflictions that brought them to death’s door. The inroads in this group of unfortunates have come by way of super-specialists far removed from the concerns of the worried well. Richard Lamm, the former governor of Colorado famously derided the work of Thomas Starzl, the father of organ transplantation, questioning the great surgeons use of public health resources to attempt to save individual patients at death’s door. These were the early days of transplantation, when successes were a far cry from the results enjoyed today. As the passage of time made transplantation success rates north of 90% and the public watched children destined for death skipping down hallways, Lamm’s cold calculus came to easily be rejected.
Yet in 2000, writing for Health Affairs, Lamm doubled down.
“Colorado’s doctors were constantly reminding me that in medicine, ‘cost was never a consideration.’ But health care was the fastest-growing segment of my budget, demanding increasing amounts of public funds for the medical school, for new equipment at the hospital, and for Medicaid. Daily, if not hourly, hospitals in my state would effectively appropriate state funds for a high-risk, low-benefit procedure, while I knew that those funds could easily save more lives elsewhere in the health care system or outside of it, say, by buying three new teachers, fixing a broken sewer main, or adding two police officers to a high-crime area for a year. How could cost not be a consideration in making a public budget?”
“How can patient advocates feel so good about the system they work in when I, as public advocate, feel so guilty for having so many people without even basic health care?”
It never strikes Lamm that the citizens he is so desperate to ‘cover’ with health insurance may want to choose not to die and opt to receive an organ transplant. What good is a health insurance plan that doesn’t pay for life-saving therapy when you actually need it? This would be akin to paying for a fire-suppressing sprinkler system, but not paying to have firefighters come to battle a structure threatening blaze.
The kinder, gentler, smarter society the ideology Lamm represents is a society that turns its back on the tangible, acute needs of the sick for hypothetical needs of the well. In a perfect world, perhaps one could do both. Unfortunately, when it comes to interventions for the worried well, controversy abounds for how exactly one accomplishes this. Does one advocate for zoning and tax policy to allow fresh produce and groceries to be sold in poor zip codes to address ‘food deserts’ so Bobby has more healthy options? Should we advocate for sin taxes on alcohol, tobacco and sugar containing products that by their very nature are meant to be regressive taxes that affect the behavior of patients like Bobby? Does caring for Mr. Chahloubi mean taking a position on US foreign policy interventions in that country, or perhaps advocacy for immigration for asylum seekers?
In an age not so long ago, it was easily recognized that the answers to these questions were to be wrestled with well outside the purview of the medical field. That a growing number in the medical community think medical training gives us special expertise to solve these problems speaks to a self-important medical echo chamber that believes society’s values should mirror its values.
We would be wise to heed the words of C.S. Lewis – “Of all tyrannies, a tyranny sincerely exercised for the good of its victims may be the most oppressive. It would be better to live under robber barons than under omnipotent moral busybodies… those who torment us for our own good will torment us without end for they do so with the approval of their own conscience… This very kindness stings with intolerable insult. To be “cured” against one’s will and cured of states which we may not regard a disease is to be put on a level of those who have not yet reached the age of reason or those who never will; to be classed with infants, imbeciles, and domestic animals.”
Bobby and Mr. Chalhoubi aren’t particularly interested in my views on sugar taxes or my feelings about Bashar al-Assad. They want someone invested in them, not in some abstract population. Advocacy by physicians has its place. It’s just not in the exam room.
Anish Koka is a physician in private practice in Philadelphia.
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