“There was one time when I wasn’t here for seven months in a row,” ”Pam” told me.
I sat with Pam in her third floor hospital room — the floor on which she always stays when admitted to the inpatient medicine service — as nurses, doctors, and janitors poked their heads in the door to say friendly hellos and “Nice to see you again, Pam!” A dining facility staff member entered with a tray, letting Pam know, “I brought you the usual, Pam, I missed you!” Pam smiled and joked with the parade of staff members as I pondered this oddly happy reunion.
I told Pam that the hospital seemed like Cheers for her, as it is a place where everybody knows her name as the show’s theme song says. She laughed and agreed. “I can’t go down the hall to the CT scan machine without someone stopping to say hello. It’s like home here.”
Later, looking through Pam’s chart, I found her medical problem list, rivaled in length by her list of medical providers, and topped by her number of recent inpatient admissions. I counted a dozen conditions at first glance. Her providers included primary care, urology, pulmonary, otolaryngology, social work, physical therapy, nutrition, nephrology, dermatology, rheumatology, endocrinology, in-home caregiver, Medicaid case manager. Number of inpatient admissions in four years: 42. I was impressed but disheartened and daunted by the number of providers involved in Pam’s care. How could someone attended by so many brilliant minds with world-class skills remain so sick? What could we, a team of six students, possibly contribute to her life?
When I first imagined hotspotting, I pictured working with stereotypical high-utilizing patients: individuals with complicated socioeconomic and psychosocial circumstances with no continuity of health care. I envisioned that we could help patients establish relationships with primary care providers, obtain bus passes for transportation to appointments, and organize their medications. However Pam didn’t seem to need any of these interventions. She had friends, family, financial resources, biweekly appointments with her primary care provider, and a brilliantly organized system to take her medications at the exact times prescribed. What more could anyone do, especially a group of students with good intentions but few real skills?
During the next several weeks after Pam’s discharge from the hospital, members of our team attended outpatient medical appointments with her and visited her when she was admitted to the inpatient medicine service again. We visited Pam at home and talked with her about her goals. We learned that she wished for greater mobility than she had in her electric scooter but struggled to walk more than several steps without sitting down to rest; this led her to avoid leaving the house to socialize in the neighborhood as she once enjoyed. She wanted to eat better and lose weight, but she relied on her in-home caregiver to cook, and the caregiver tended to cook cheap, unhealthy food. We saw that the kitchen was full of packaged foods and suffered a notable shortage of fresh fruits and vegetables. As we sat in Pam’s living room and explored her hopes, we also discovered that she was caring for her dying mother, often at the expense of her own health and well-being.
These details of Pam’s life would have been difficult to uncover during a 15-minute primary care appointment in an office far from her home. As students with time as our resource, we had the opportunity to understand the determinants of her health in a patient-centered context. Our multiple hour-long visits to her at home, combined with accompanying her to health care appointments, allowed us to better understand her goals and challenges to achieving them.
Accordingly, we are working with her to obtain a rolling walker with a seat so she can leave the house with an assistive device that not only helps her walk but also allows her to sit for rest at any moment. We are exploring how to help her obtain healthier food through Meals On Wheels. We can support her when she transitions through periods of grief related to her mom’s illnesses.
While I realize that we will not cure Pam of her chronic illnesses, I like to think that we can make a small impact on the trajectory of her life. For instance, by helping her obtain a walker, we can encourage exercise and socialization, which may decrease her risk of hospitalization for infections from pressure ulcers. The cost of one hospitalization offsets the cost of a walker many times over. By helping her make healthier food choices, not only can we promote weight loss, but also help her to develop a sense of self-efficacy around her health. This increased confidence may enable her to make other difficult lifestyle changes.
Perhaps most importantly, by listening to Pam’s life’s narrative, we can validate the difficult experiences she has survived. We can also show her that her perspective is valuable in teaching us about a patient’s experience in the health care system and how to live a meaningful life in the face of serious illness. In this way, I believe that the power of storytelling cannot be underestimated. As hotspotters, I see our role as bearing witness to our patients’ struggles and supporting them as they work toward achieving their goals.
Eliza Hutchinson is a medical student who blogs at Primary Care Progress.