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Recently, I fell, fractured my pelvis, and was admitted to the hospital. You have to go to a rehabilitation facility, my case manager told me. She handed me a list of facilities with stars next to them, so I chose the five-starred one near our home.
"What exactly is a rehabilitation facility?" I wondered as an ambulance took me over bumpy city roads to the facility I’ll call West of Boston. I imagined a small hospital with a gym attached.
I was wrong.
My experience of medical institutions -- some bad, mostly good — is privileged, as a white patient with good insurance in Boston. I have pancreatic cancer and have been treated at the Dana-Farber Cancer Institute for over two years.
At Dana-Farber, doctors and nurses treat me as a person. They respond thoughtfully to my questions. As they check my test results, examine me, or set up an IV, we sometimes discuss gardens, pets, books, family. And death. They’ve helped me face it with a sense of wholeness.
As an anthropologist, I learn by participating, listening, observing, conversing and connecting on-the-ground knowledge to wider realities. This helps me think through my cancer experience. It also helped focus my attention while I underwent rehabilitation.
It was a shock, after Dana-Farber, to arrive at West of Boston. I annoyed the unsmiling male nurse assigned to me by asking him to clarify the consent forms, and then by requesting a female nurse. I was wearing a catheter, I explained. He immediately lifted my gown and grabbed my catheter.
I spent the next four days trying to get out of West of Boston. On the third day, I spent a painful night after being told that my pain medication had run out. On the fifth day, as I left, my nurse didn't want to hand over my remaining medications. I discovered that several pain pills were missing.
I was transferred to a better facility, which I’ll call North of the River. Nobody there violated my bodily privacy or left me in pain after stealing my pain meds. But in both facilities there were other, less flagrant and often unintended institutional ways of stripping people of their personhood.
I felt more like an inmate than a patient in environments that were more authoritarian, less medically competent and more depersonalizing than anything I’d experienced before.
I learned some crucial differences between hospitals and rehabilitation facilities. Rehab facilities are often added on to nursing homes, sharing their institutional character. I felt more like an inmate than a patient in environments that were more authoritarian, less medically competent and more depersonalizing than anything I’d experienced before.
Both rehabilitation and nursing facilities pay nurses and their aides (or Certified Nursing Assistants) less than hospitals. They tend to be chronically understaffed, apparently both as a consequence of lower pay and as a means of lowering costs. The most qualified and experienced people are likely to leave for positions with better working conditions.
Although I found at least one superb nurse and several superb aides in each facility, the staff-patient ratio was stressful and double shifts or second jobs clearly exhausting. Low pay and bad working conditions are toxic to nurses, aides and patients alike.
At first I didn’t notice the gradual wearing away of self. Nurses and their aides are always busy in hospitals, but it’s still usually possible to build friendly relationships that humanize life as a patient. In the rehab facilities, those relationships were sometimes possible -- and much appreciated. But they were the exception.
An Awkward — And Unwashed — Object
Most staffers didn’t use my name, ask about my life or home, or talk much at all. Although they were friendly, many spoke in the voices adults reserve for children. I reminded myself of their work conditions, but still felt less like a person with a history and more like an awkward, heavy object.
An object, moreover, that went unwashed. There were no moistened washcloths, so no bed baths. After the first shower -- an important occupational therapy exercise -- I was told an aide would help me wash. When I asked, it was clear that this was difficult, given aides’ heavy schedules. I had four showers in my 18 days in these facilities.
These small, routine social erosions derived not only from cost structures and difficult work environments, but also from institutional hierarchies. I rarely saw administrators. The (excellent) physical and occupational therapists were not a central part of ward life, tending to work together in their office when not with patients.
Nurses’ aides spent the most time with us, answering call buttons, helping us to the bathroom, making beds, and much more. They worked hard. But they were also the only category of staff to be publicly chastised. In both facilities, I (and everyone else) heard charge nurses bawling them out in the corridor. This both marked their status difference and signaled to aides and inmates alike that intimidation was acceptable.
Perhaps If I Do What The Nurse Wants, She'll Be Kinder...
Nurses controlled our medications, evaluated our health, handled emergencies, and mediated our access to doctors. Some nurses worked with an unflagging kindness and competence. But with others, anything less than immediate compliance meant a patient was “difficult.”
Whenever my knowledge of my medication conflicted with what a nurse read or misread in my records, the full force of a stern parental voice was deployed. I had to argue until the nurse found the right record or the right dose. Once, exhausted, I gave in over an insulin dose. “Perhaps,” I thought, “if I do what this nurse wants, she’ll be kinder.” I ended up at the edge of the danger level for low blood sugar.
There were no daily doctors’ rounds. Doctors and nurse practitioners, I learned later, are paid per individual visit. Because more visits mean higher costs, you may never see a doctor between admission and discharge.
The everyday checks and balances between doctors and nurses in hospitals, then, disappear. A payment structure like this gives overworked, underpaid and lightly supervised nurses a lot of power over patients.
When I developed an infection, a nurse canceled the test a nurse practitioner had ordered, telling him I was feeling better. I wasn’t told. The nurse practitioner didn’t check with me, his patient. My test, its positive result and the treatment were delayed. If I hadn’t investigated and argued, again, for basic medical care, the infection could have become serious before it was found.
With this pay structure, nurse practitioners and doctors speak to nurses rather than listening to patients. This not only places enormous medical responsibility on overstretched nurses, but also reduces patients to bodies that speak mostly through their vital signs. It was no surprise to read, in a 2016 federal government report, that nearly a third of patients in rehabilitation facilities are harmed as a result of poor care.
“Rehabilitate,” from the Latin habilis, fans out into different meanings: a “making able” of the physical body, a “making proper” of behavior, a “making manageable” by others. These pull in opposite directions.
While my body was “made able” through physical and occupational therapy, I was “made manageable” through a stripping away of my history, knowledge and personhood in the ward. I was only in those facilities for 18 days. But through them, “rehabilitate” acquired, to me, the meaning of another word derived from habilis: the French deshabiller, “to undress.”
If There's A Next Time...
So what would I do if I found myself again in an acute-care hospital, in need of rehabilitation? Given how many of us will be sent to a rehabilitation facility (or nursing home) at some point, most of us know remarkably little about them, or how to find a good one.
Feedback mechanisms are weak. The star ratings on the list I was handed in hospital were misleading. Sick, injured or impaired patients, a social worker pointed out to me, can’t or don’t want to complain formally to state or federal official bodies. They also rarely use social media review sites. Some visitors do, but the social undressing and medical risk I experienced would have been invisible to a visitor.
It comes down to this. When facilities offer better pay and work conditions, they can hire better staff. And when staff are better treated, patients are better treated. In the current climate, these facilities are less easy to find. But not impossible.
Most doctors don’t know them. But many social workers and physical and occupational therapists have professional networks that include colleagues in rehabilitation facilities. Acute-care hospitals employ both. So now I’d ask to see them, and ask them to consult their colleagues. And I’d try not to feel pressured, as I did before, into leaving the hospital without finding out. I know what the stakes are now.
Rosalind H. Shaw is an associate professor of anthropology on long-term disability leave from Tufts University.
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