“They lied to me,” my patient’s wife said, staring out the window, avoiding eye contact. Mrs. J was pissed, I had been warned when I arrived at work. “They told me there would be a nurse helping us at home.”
Mr. J had been in the hospital with us for over two weeks. As the resident on six nights a week, I knew him and his wife better than I usually get to know my patients on day shifts. Night after night, I got called to his bedside to assess his bleeding foot or to fix his “wound vac” — a mess of sponge and tape overlying his partially amputated foot, attached to a machine suctioning out extraneous fluids. Whenever I came to Mr. J’s room, his wife, one of the least squeamish relatives I’ve encountered, would, without prompting, adjust the room lighting and grab extra gauze and tape for me. She peered over my shoulder, examining her husband’s foot as I worked, and frequently snapped photos to show him how things were progressing.
“Are you a nurse?” I asked early-on. She shook her head.
“How could anyone not be curious about this?” she replied.
Easily, I thought, remembering my own mother’s reaction to my father’s gaping chest wound. My mom couldn’t stand his wound vac changes, and would either leave the room or, at the very least, turn away every time I peeled back the tape, exposing his ribcage, muscle, and tissues. I sometimes worried more about my mom passing out during those dressing changes than I did about my dad’s pain with them.
“They lied to me,” Mrs. J repeated. “They said there would be a nurse to help with his antibiotic infusions every day, and now they say I have to do them? That doesn’t make any sense. I can’t learn this. I can’t do this.”
Mr. J was finally ready to be discharged home, but would still require weeks of intravenous (IV) antibiotics for his foot infection. We had been planning his discharge for days: threaded a semi-permanent IV line that he could go home with, obtained final recommendations from the Infectious Disease doctors regarding which antibiotics would best treat his infection, and set him up with a visiting nurse who would come to their home to draw his labs and check on his wound a couple times a week. On the first visit, the nurse would show Mrs. J how to inject antibiotics, but after that, the responsibility would fall on Mrs. J to administer her husband’s meds every 12 hours. But Mrs. J didn’t feel equipped to give the antibiotics, and was adamant that she couldn’t take her husband home without daily nursing support — a service I couldn’t offer her.
I tried to reason with her. I explained that we often discharge patients with IV medications and that their family members quickly learn how to give the infusions. I told her that it was a low-risk procedure. I pulled out a syringe filled with saline and showed her the steps. Still, she pushed back.
“There’s always risk,” she said. “You don’t just teach someone in a day what it takes nurses months to learn. I could kill my husband.”
While I doubted death made the list, she was right to think there are risks. For example, if she didn’t properly clean off the IV, she could theoretically introduce new bacteria into the bloodstream. If she didn’t store the antibiotics at the right temperature, the medication wouldn’t work. Or, in the least likely scenario, if she injected too much air into the bloodstream, she could, theoretically, kill her husband, but this would require high-volume and high-frequency infusions of air, unlikely with the small syringes of antibiotics. Setting user-error aside, with outpatient therapy, one might fail to recognize the adverse effects of antibiotics due to less frequent lab monitoring, or develop issues with the IV line itself such as a blockage or dislodgment.
I could empathize with Mrs. J. When my dad came home from the hospital after having emergency surgery resulting in his open chest wound, he too had to continue with IV antibiotics. As a medical student and the only medically-oriented member of my family, I was tasked with giving him his infusion, despite having never pushed meds before. The visiting nurse walked me through the steps, and left a piece of paper detailing them: wash hands, don gloves, clean the IV with an alcohol pad, remove the air from the pre-filled syringes, push saline through the IV, clean, slowly infuse the medication, clean, infuse more saline, push heparin to keep the line open, clean one last time, and replace the cap. I took my task seriously and was careful not to miss a single step. One time, my dad broke out in a sweat, became pale, and nearly fainted as I was infusing the antibiotics. I panicked thinking I had done something wrong. He perked back up with a cool washcloth on his forehead, but I felt on edge each time after that, acutely aware that I could hurt him.
At-home antibiotic administration began in the mid 70s. Like many things in health care, it was born out of insurance issues: gaps in coverage made it financially impossible for many patients to stay in hospitals or go to nursing facilities for long-term antibiotic courses. In addition to the system-wide cost savings, at-home antibiotics also have the potential to improve quality of life for patients and their families. When faced with several weeks of either sitting in a hospital, residing at a nursing facility, traveling to an infusion clinic (potentially multiple times a day), or getting antibiotics at home, most people would jump at the latter option.
“In a perfect world, we would have nurses come every single day to help you,” I told Mrs. J. Having built a relationship with Mr. and Mrs. J over several weeks, I let my guard down a bit more than usual, “Honestly, I wish I could come by and do it myself, but I can’t. I trust that, if anyone can figure it out, it’s you.”
Mrs. J pressed further: Why couldn’t they have a nurse come by every single day?
I didn’t have an answer for her. Was it nursing shortages? Limited insurance coverage? Just the reality of the deeply flawed American Healthcare system? These aren’t the things that are taught in med school. In fact, no one has ever even told me explicitly that it’s impossible to have daily nurse check-ins, but from my dad’s experience and from my first year as a doctor helping set up at-home services for patients, I knew it to be true.
Home care itself predates at-home IV antibiotics by more than 150 years. The first formal home care service was established by the Boston Dispensary in 1796. By the late 1800s, there were volunteer home nursing services that eventually evolved into the visiting nursing associations we have today, largely in response to the new health care technologies and needs that arose after World War II. These are no longer volunteer services. While researching, I learned that, on average, visiting nurses in my state earn over $77,000 annually, which is $17,000 more than the average resident physician salary. Insurance typically covers the cost.
I shook my head in response to Mrs. J’s question, a signal I’ve begun to employ when I, a relatively new doctor, am yet again forced to apologize on behalf of a deficient health care system. “I’m sorry, I wish there was something I could do for you.” I had Mr. J stay the night, buying us time to sort out a safe discharge plan. He went home the next day after agreeing to administer the antibiotics himself, which is rather technically difficult — using one arm to push meds into the other, but we sent him on his way nonetheless.
I called their house a couple days later just to check in. “Actually, we’re heading to the Emergency Department,” Mrs. J told me. “Will you be there?”
Mr. J had fallen at home and the IV line pulled out. This was one of Mrs. J’s fears come true: her husband was hurt under her watchful but inexperienced eye. I could barely bring myself to face her the night we admitted Mr. J back to the hospital, after their full-day wait in the Emergency Department. “I’m sorry,” I said again, a broken record, hiding my own frustration at the circumstances behind a series of empty apologies.
If the history and present-day reality of at-home nursing services demonstrates anything, it’s that we rely on a stopgap system to care for patients at home. When the hospital stay is too long and expensive, we send people out with infrequent nursing visits to cover the care that absolutely requires technical skills (like blood draws), but the bulk of the work falls on caregivers: family members, friends, or that neighbor who happens to be a nurse. As long as there’s someone at home, we, as doctors, call it a “safe plan,” and sign the discharge paperwork. Frankly, I doubt most of my colleagues know what it looks like when patients go home. How they have to Saran Wrap their IV lines just to shower, or keep a sealed box in their bathroom to dispose of Biohazardous waste, or store antibiotics in the fridge next to their eggs. We’re somewhat shortsighted in medicine, desperate to get hospitalized patients to the finish line of their inpatient stay, with little regard given to what happens beyond our walls.
We probably never should have sent Mr. J home, but hindsight is always 20/20. What I wish I could’ve offered them, more than assurances, was an extra layer of support: more nursing visits, more check ins, more help. That’s all they asked for in the first place. I wonder if it would have changed their course.
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