Encounters with Rurality in Clinical Ethics Consulting

I do clinical ethics consulting for a hospital that serves a huge rural area to its north, basically 2/3 of the entire state of Maine. Unlike a lot of other clinical ethicists, I don’t do this full time. So getting an ethics call feels sort of like someone has put a tiny pinprick in a movie screen where my day is unfolding as a university professor. Through the pinprick comes a very narrow shaft of light with some information about a patient: usually who they are, how long they’ve been in the hospital, their condition on admission and today, and what the ethics concern is.

The vast majority of ethics cases in my hospital involve patients or families from rural areas. After I get an initial phone call, I make the hole in the screen bigger by trying to learn more about the patient, from the medical record, other staff, maybe his PCP, and, once I get to the hospital, the patient and family, or friends. A patient who started out as just a name and a condition slowly gets fleshed out. Adding layers to my own understanding of who this person is, was, and hopes to be is a really interesting and important part of my work. Over the years, I’ve gotten a little better at figuring out how rurality fits into that process of discovery.

I had a suburban upbringing in a small state with a very dense population. What I knew about rurality came from a steady diet of popular culture that either problematized the rural (Deliverance, Texas Chain Saw Massacre) or hid it from view (Dynasty, Hill Street Blues). Sure, I could appreciate rural areas as heritage sites (tiny towns dotting a bucolic landscape), or as multifunctional recreational spaces, but I’m embarrassed to admit how many times I’ve muttered, “How can people live out here?” as I gazed out the window of a swiftly moving car. As a transplant to Maine “from away,” patients’ hometowns initially meant very little to me. Boy, has that changed.

One of my first cases involved “Roland,” a man from Piscataquis County, where there are fewer than six people per square mile. His uncontrolled diabetes contributed to the heart attack that sent him to his small local hospital for stabilization, after which he was transferred to our cardiac intensive care unit. There was a question about medication and treatment adherence. So I did some research on rural health, and I learned that rural residents tend to be poorer, are more likely to experience diabetes and heart disease, are less likely to be employed or have health insurance. They often have to travel greater distances to access health care due to factors such as shortages of primary physicians. They are less likely to own a car but also less likely to have access to reliable public transportation.

This information about rural health disparities gave me a perspective on Roland’s nonadherence and helped me to think around that term. Sure, “nonadherence” is better than the old term “non-compliance” but it still reminds me of something inert, like tape on a wall. “Nonadherence” makes us focus on what a patient is not doing, rather than on what he is doing. It sets up the idea that autonomy for Roland is following the plan, and when he doesn’t, he’s being irrational or driven by bad habits. I wanted to think about Roland’s health by his own lights.

One of the issues turned out to be that Roland’s wife’s brother and his family had come to live with them in their small trailer. Roland’s wife thought having her brother around would help with rides and Roland’s care, but the opposite was true. Roland disliked his brother-in-law, whom he accused of making and selling drugs—a big issue in Maine. He wanted nothing to do with his in-laws, who made him anxious and stressed, so he shut himself in. In effect, he was doing something for his health, at least from his point of view.

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