How Frail the Human Heart
Eli needed a new heart valve. Would he get one?
By Zoe Adams
Image by Adrian Russo.
When I met Eli, a man in his early 40s, he had already been turned away by two hospitals. Eli had endocarditis, an infection where bacteria from the bloodstream latch onto and disfigure the valves of the heart. Like skin and soft tissue infections and viral hepatitis, endocarditis is common among people who inject drugs. Once bacteria enter the bloodstream–from used syringes, filters, or tap water–they set up shop on the surface of prosthetic joints, heart valves, and pacemaker wires. “Sticky areas,” a medical school professor once told me.
Eli, who has a long history of injecting heroin and fentanyl, developed high fevers and shaking chills. He was profoundly tired, barely able to stand up at work. He recognized these symptoms. A few years ago, he developed endocarditis and needed his mitral valve replaced. The doctors made him swear to never use drugs again. Sort of like how a cardiac surgeon in Knoxville, Tennessee told a young mother that her first valve replacement from endocarditis would be “a one-time deal.”
A “one-time deal.” As if not using drugs was about sheer willpower. As if support systems or relationships would magically appear. As if poverty, affordable housing, and the toxic drug supply were irrelevant.
After his first valve replacement, Eli enrolled in a methadone program, but he couldn’t stand showing up to the clinic every day. The program–with its frequent urine screens, inflexible hours, and strict take-home policies–took over his life. He felt surveilled, out of control, like his life was defined by treatment. So, he began injecting fentanyl again, or heroin if he could find it. But injecting again meant Eli risked developing another case of endocarditis. Once damage to a valve has occurred, and especially if you have a prosthetic valve, the tissue remains prone to reinfection.
What Eli needed was another valve. But it wouldn’t be so easy to get one.
***
Doctors have historically shied away from performing second or third valve replacements on people who continue to inject drugs after their first operation. A valve replacement is a high-risk procedure: it requires breaking open the sternum, and mortality increases when it’s a second or third operation. But most patients with endocarditis from IV drug use are young with few comorbidities, increasing their likelihood of a speedier recovery. And for many patients, the alternative is death.
Some physicians feel it is a question of resource allocation and unnecessary spending. To be sure, valve replacements are costly and complex operations. But, unlike organ transplants, mechanical or bioprosthetic valves are not necessarily in short supply. In a 2014 piece in Annals of Thoracic Surgery, two cardiologists introduce the case of Mr. X, a “recidivist intravenous drug user” who needs another valve replaced after a second bout of endocarditis. Mr. X’s story sounds a lot like Eli’s. The authors call on their readers to “consider the imperative to treat all patients justly and fairly regardless of their societal transgressions, while at the same time knowing when to say, ‘enough is enough.” But who had Eli transgressed against? What had society ever offered him? And was addiction a manifestation of societal transgression?
That piece was published eight years ago. How do doctors feel in 2022, the year that marks the highest number of overdoses ever recorded in U.S. history?
In 2021 and 2022, Max Jordan Nguemeni, a resident physician at Brigham and Women’s Hospital and Peste Magazine’s Editor-at-Large, along with researchers at Yale School of Medicine, published two surveys on cardiac surgeons’ perceptions of patients with IV drug use endocarditis. In 2021, over eighty percent of cardiac surgeons stated that they would limit the number of surgeries for patients with recurrent endocarditis from IV drug use. Over sixty percent of surgeons reported having declined to operate on patients like Eli.
Many surgeons, though, don’t know the diagnostic criteria that define addiction. In 2022, a quarter of cardiac surgeons across America considered substance use disorder to be an individual choice, as opposed to a chronic medical condition. This moralizing — and inaccurate — stance is not just politically incorrect. If an infected heart valve goes untreated, complications like abscesses and arrhythmias can occur, which often lead to death. The definitive treatment for patients like Eli is a valve replacement.
But things may be getting better. Some larger medical centers like Jackson Memorial Hospital, Yale New Haven Hospital, and Massachusetts General Hospital have established multidisciplinary IV drug use endocarditis teams made up of cardiac surgeons, addiction medicine providers, and infectious disease specialists. Addiction medicine providers help patients get linked to follow-up care and offer highly effective treatments like buprenorphine or methadone while in the hospital. Like a tumor board, meetings are convened to discuss a particular patient’s case. In the meetings I’ve had a chance to witness, providers advocate for their patients, educate, and correct one another. Because addiction medicine remains siloed from the rest of the medical field, many physicians are not aware of what patients must go through to access treatment, or what it means to have a substance use disorder.
The unpredictability of addiction is status quo. People use, they stop using, they use again. They’re in treatment, they stop treatment, they’re in treatment again. The twists and turns of addiction should not preclude a patient’s chance at another valve. Even if it’s costly, even if it’s risky.
***
Eli curled into a ball, sinking into his hospital mattress. He had lost his edge in the face of uncertainty. He whispered, voice shaky, “You’re going to advocate for me, right?” It was like he was asking me for another human’s heart, a scarce resource, when what he needed was a prosthetic valve processed in a lab from the heart of a pig.
“I need to know you’re on my side,” he said. On his side? What other side was there?
“‘I need to know you’re on my side,’ he said. On his side? What other side was there?”
A couple days before the interdisciplinary meeting, Eli developed a life-threatening arrhythmia. The abscess around his prosthetic valve was encroaching into his atrioventricular node, a small structure in the heart responsible for initiating a coordinated squeeze of the ventricles. He had developed complete heart block — his atria and ventricles were no longer talking to each other — and needed a temporary pacemaker. Several doctors would soon join a Zoom call to determine whether he was a surgical candidate. He certainly needed surgery, but would anyone operate on him?
When I clicked the blue box to join, my stomach turned. What ensued felt like playing God. Doctors interrogated the prognosis of his addiction, tacitly evaluating whether he was deserving of hospital dollars and resources. Others spoke to his strengths, his willingness to commit to treatment, the support systems in his life.
These multidisciplinary meetings are not standard-of-care in hospitals across America. A recently retired attending told me that fifteen years ago the decision to operate on patients who needed a second or third valve replacement was up to one cardiac surgeon. No room for pushback, no time for advocacy. Patients would have to shop for surgeons, beg at their doorsteps, pray a hospital fifty miles over might be more sympathetic.
The committee came to a consensus and did the right thing. Eli got his second valve replacement, and the operation went smoothly. But the hesitancy providers felt about pursuing a second operation made me pause. When I talked to younger colleagues about Eli’s situation, they were similarly enraged. An operation isn’t a magic trick that will make the social determinants of health disappear, but why did giving up on patients like Eli seem so business-as-usual? When I spoke to older physicians, they nodded their heads and shrugged, having taken care of these patients countless times. “Many of them just die,” an attending told me.
But there was a double-standard here that I couldn’t help but notice. Few question whether patients who continue to smoke cigarettes or eat high-cholesterol diets should receive another stent or bypass graft. We don’t just give up on patients who have uncontrolled diabetes and are repeatedly hospitalized. Oncologists and other specialists pursue invasive, expensive procedures to extend a patient’s life for a month, six months, a year. If a patient wants to press on despite a poor prognosis, we press on alongside them. As we should. But when we’re caring for a 40 year-old with severe addiction, we get stingy about our resources.
If we interrogate that stinginess, we find assumptions, inaccuracies, biases, and the inclination to punish patients, not care for them or meet them where they are. If an oncologist extends a cancer patient’s life for one year, it’s a victory. If we extend Eli’s life for a year or three, some would consider it a waste: wasted resources, wasted time, wasted care. What makes Eli’s life less worth living? Even if he uses again, who’s to say the way we cared for him wasn’t valid, wasn’t worth it?
Author’s Note: Eli’s name has been changed and his identity has been protected throughout the piece. The essay is based on real events, but pertinent details have been changed.
Zoe Adams is a resident physician in Internal Medicine at Massachusetts General Hospital. Her writing and research have appeared in Urban Omnibus, the Journal of the American Medical Association, and the Journal of General Internal Medicine, among other publications. Follow her on twitter at zoe_m_adams. Thank you to Anna Reisman, Kenneth Morford, and Asher Levinthal for their help thinking things through with me.