Notes from the Hotspotters: Finding Flow in Chronic Disease Management

Originally posted December 16, 2014

By Jake Quinton

Madeline – a nursing student and hotspotting teammate – and I got back in the car after our third home visit with “R,” a woman whose complications from diabetes have landed her in the hospital every one to two weeks for the past two years. She is so well-mannered that she shows concern over how much homework we’re able to get done while we’re working with her. As we drive, I’m struck by the discrepancy between R’s health challenges and her resources. 

In college, I took a philosophy class called “The Theory of Happiness.” In it, we studied Mihaly Csikszentmihalyi’s theory of “flow.” The University of Chicago professor and author of Finding Flow argues that it is not happiness that people should seek out in life, but rather flow. Flow happens when one’s skill aligns with the challenge of the situation. In other words, you achieve flow in situations in which you are challenged, but your skills are high enough to meet the challenge. Csikszentmihalyi says this situation requires “every ounce of psychic energy,” and offers the metaphor of a skier racing down alpine slopes, narrowly dodging trees, seemingly unaware of his or her surroundings. Think of athletes who describe being “in the zone.”
Low challenge situations that require only low skills breed boredom or apathy. Low skill in high challenge situations breeds anxiety. R, like almost anyone with multiple chronic conditions, little ability to pay, and a challenging home environment, faces anxiety-inducing, low-skill-high-challenge situations every day. They simply do not have the resources to rise to the extreme challenges that their conditions present. In care coordination, we have to help get them closer to flow. We have to advocate for our patients as individuals faced with tremendous adversity and assist in building their toolkit to get them the high skills to match the high challenge of their medical condition so they can begin to solve their own problems.
I met R in the hospital after her ninth admission in three months, all following the same pattern. She was emaciated, exhausted, and on IV fluid replacement. We talked about her goals, what her life was like before she started getting sick, and what it would be like for her to get back to that life. We talked about her insulin regimen, and I asked if she’d be interested in working with our student care coordination team.
She turned us down.
Three weeks later, back in the hospital, she turned us down again. A few weeks later, on our third try (and her third admission since we’d met in July), another student on our team convinced her that it might be worth working with us, given that her current strategy wasn’t working. She agreed.
Once she was out of the hospital, we had our first meeting, squeezed around the table under the fluorescent lights of her kitchenette. She appeared much better, and she had follow-up appointments scheduled with her primary care physician, dentist, podiatrist and ophthalmologist.
We planned for Madeline to text her daily, reminding her to check and record her blood sugar and the amount of insulin administered. This seemed to work for about a week, but then a few days after her dental appointment, she stopped responding.
A week later, R was back in the emergency department. Her dental appointment had actually been for an oral surgery that she did not tell us about. The surgery had prevented her from eating solid food for several days. She told us she’d been living on broth when her blood sugar dropped so low, she ended up back in the ER.
We added ourselves to the list of health care personnel who neglected to realize that her nutritional plan wasn’t exactly standard of care and that nutrition might be a challenge for an out-of-work, type-1 diabetic after oral surgery. We asked her to track her nutrition, blood sugar, and insulin and to supplement her meals with Glucerna shakes. She agreed, and we planned another home visit. We were on our way to meet her when she called to cancel, saying she wasn’t feeling well enough to see us. We confirmed she had enough shakes to get through the next few days, and she assured us that she did.
A week later, R invited Madeline and me back to her apartment. The woman sitting at the little kitchen table was noticeably different from the one in the hospital bed just two months earlier. Her cheeks were filled out, color had returned to her face, and she produced a small blue notebook — proof of blood glucose and insulin tracking. Now she was ready to face her hospital bills. Since the previous weekend when she was too weak to leave her bed, she had bounced back without going to the hospital for the first time since she could remember.
This was revolutionary.
A door opened, and it’s our job to make sure it doesn’t close. R has realized that student care coordinators can help her and that her problems are more solvable than she originally thought.
I wouldn’t go so far as to say that she’s “finding flow.” But R has established a trusting relationship with students who believe in her. She’s learning that she can have some control over the course of her illness. She is moving from a low-skill state to an intermediate state. The burden of handling her chronic illnesses, in addition to the financial burden of chronic unemployment, have weighed her down for quite some time, with no end in sight. The simplest of interventions (nutrition shakes and a food diary) have had a tremendous effect on her, and they are waking her up to other possibilities. Now she is asking for help with broader issues, setting up specialist appointments, thinking about financial issues, and slowly getting back on her feet.
Quinton JakeJake Quinton is a third-year medical student at LSU New Orleans, and a leader of the multi-institutional New Orleans student hotspotting team comprised of members from LSU, Tulane School of Medicine, and Xavier University College of Pharmacy. Jake hopes that the project lends insight into drivers of health care costs that aren’t helping anybody, despite the dedication and skill of our health care delivery system.