Chicago Health is committed to publishing a diversity of opinions. The opinions expressed in this op-ed article are the author’s own.
If you were to recently set foot in our moderate-sized, urban community emergency department (ED), you might notice a pale, awkward, endearingly giggly teenage boy sitting next to the nursing station. He may have been watching Tom and Jerry cartoons on a mobile workstation or perhaps eating French fries from the hospital cafeteria.
And if, by chance, you returned a day or two later, you might note the same boy, sitting in the same chair, watching the same cartoon. And you may rightly wonder why the boy was still in the emergency department.
Ask some of the staff members nearby, and you’d learn that the teen has been there for days. He eats his meals, showers, sleeps, flirts innocently with female staff members, and laughs along with others, trying his best to belong. He sometimes calls out for his mother, although this happens less and less as the days pass and the staff assumes the role of his surrogate family.
After more than 30 days of taking up residence in the ED, the boy no longer has to try to belong; he has become ingrained into the fabric of its daily life. Now almost in his 20s, he has outgrown the ability of his family to manage his complex behavioral health issues at home, so he sits in the ED, waiting for placement.
Progressive cuts to inpatient and outpatient mental health care in this country have whittled away the options for those in need. For many individuals, the only way to receive care is to show up at the ED, where they must be stabilized and treated, regardless of their ability to pay.
Like many community hospitals in the Chicago area, our hospital has no inpatient psychiatric floor. Years of city and state funding cuts and closures of outpatient mental health clinics, particularly in poor and underserved neighborhoods, leaves few, if any, options for referring patients who are being discharged home. Our nurses spend hours exhaustively calling local behavioral health facilities, trying to find a long-term care facility, such as a group home, to admit the boy.
The requests are all met with a similar response: “I’m sorry, we don’t take autistic patients.”
Calls go out to increasingly distant facilities, some in neighboring states. Social workers coordinate with the Illinois Department of Children and Family Services (DCFS), caseworkers, and family members, but there are protective custody issues to work through, and the wheels of the system move slowly. It is often profoundly difficult to find placement for a young adult with his unique behavioral challenges.
Meanwhile, time inches forward. The unit secretary makes sure the boy has had his daily shower before she leaves for the day. A physician checks to see if he wants any hash browns during a morning trip to the lobby coffee shop. A technician walks the boy to the windows on the far side of the department so he can catch a glimpse of sunlight for a few minutes and smile with glee.
As medical director of the emergency department, I’ve asked myself how we’ve so thoroughly failed this boy. How could an autistic teenager with the developmental capacity of a 5-year-old wind up living for more than a month in a windowless room in an emergency department? How could he have been abandoned by the systems that were designed to ensure his well-being?
His is certainly not an aberrant case. Ask any emergency physician, and they will tell you stories of behavioral health patients living for days or weeks in their ED, drifting in the muddled intersection of mental health, jurisprudence, bureaucracy, and politics, invisible to all but those on the fringes, often left alone with no agency or advocacy.
Often, these patients have broken an already threadbare safety net simply by being too much of a burden. At home they are too volatile, violent, or need too much specialized care that caregivers aren’t properly equipped to provide. In the inpatient ward, they’re subject to pressures to quickly treat and stabilize, so they can be discharged to make room for the next patient.
Or the patient may be like this boy living in the ED: too difficult for home, denied by hospital after hospital because of his autism, and too complex for outpatient programs, which typically have a months-long waiting list anyway.
Once in this no-man’s land, the emergency department often becomes the last line of care. Untold energy is spent fighting the Sisyphean battle of trying to find someone, somewhere to care for these patients and provide them the mental health treatment they so desperately need.
I am also in the unique position of being father to a 6-year-old boy with autism. Fortunately, my wife and I recognized his behavioral challenges early on, and he has been the beneficiary of evaluations by autism specialists, thousands of hours of behavioral therapy, and carefully titrated medications.
It is not coincidental to note that my wife and I are white, upper-middle-class parents living in an affluent Chicago suburb. We are extremely lucky that our son did not land on the fringes of the system and that he had vocal advocates not only in us, but also in his extended family, therapists, teachers, and doctors.
He has been the recipient of immense privilege. It is a moral and ethical tragedy that this unearned privilege should so thoroughly dictate behavioral health outcomes. And it illustrates how our healthcare system and we, as a society, have failed patients.
We have all failed this boy and the thousands more like him who live in the margins of invisibility. We need to do better. We can do better.