AN is a 34-year-old male with a PMHx of spina bifida, hydrocephalus, and Arnold Chiari malformation. The patient has been wheelchair-bound his entire life. Like many with myelomeningocele who survive in adulthood, AN has acquired chronic ischial/decubitus pressure ulcers. His condition has been further compounded by infections and chronic osteomyelitis. Poor executive functioning is a known association in patients with SB, and this was apparent.
RD had been discharged from the ED after a bout of severe headaches. During his visit, he requested a referral for a homecare provider, repairs on his wheelchair, and a script for more catheters. After combing through the patient’s history and researching spina bifida I learned that poorly managed patients with severe SB tend to follow a predictable course. A preventable inciting event (i.e., infection) leads to a chronic pattern of deterioration. Despite good treatment, with each hospital visit their condition regresses. Finally, the patient succumbs to a complication.
On physical examination, it was obvious that AN’s wounds had been neglected. His time is divided up between three locales: at home with his mother and aunt, nursing home, and at the hospital. Over the course of the past few months, he received care in a nursing home. AN mentioned how it was boring and that he was always the youngest person there. During his stay, he failed to follow up with his wound care, as a return to the nursing home would entail a mandatory 14-day quarantine. He did not want that degree of isolation. Since his release from the facility, he was not able to find transportation to his wound care clinic because his brother’s girlfriend’s car broke down. He mentioned that his mom had diabetes and expressed gratitude that his aunt brought him a couple pieces of pizza the other day. I sensed that AN’s poverty of care at home was related to his frequent in-patient visits.
AN is dependent on the system. He does not have the benefit of the reliable middleman that is family. As he ages, his trajectory is becoming more apparent. His medical record is populated with intensive hospital visits, several times per month and for days on end. He has been admitted to the ED 14 times in the past two years. His Risk of Admission has reached 90%. EMS picked him up a couple days after our appointment. He is currently back in the hospital and is receiving IV fentanyl.
A 2014 article in the NEJM, “The Hospital-Dependent Patient,” helped put this patient’s story into perspective. HDPs are not on life support or ventilation. They are not necessarily old and do not have a terminal illness. Rather, HDPs are characterized by multiple chronic conditions and frequent readmission after less than 30 days. This is not an indictment of the care they receive in the hospital, but rather on its irreproducibility when they return home. A passing analogy here might be like an inmate who would rather return to the controlled environment of prison than the streets. HDPs are “precariously and transiently compensated while hospitalized.” The hospital becomes their home; doctors and nurses become family. There is no feasible alternative. The answer is not in skilled nursing facilities or more social work involvement or better transportation services.
This reflection does not aim to find any epiphanies regarding AN’s care. I have been looking for a meaningful intervention but could not find anything. Every measure has been taken to preserve his life. But even modern medical care has its limits. The increasing frequency of his hospital admissions and his inability to care for himself leads me to believe that AN is approaching a breaking point.
I expect to see AN in the hospital over the next couple of months. I hope to have the opportunity to get to know him and to better understand his wants and needs.
Benjamin Samuel Young 