Body
After a devastating car crash, 17-year-old Mason Ellis found himself in an Indiana hospital with multiple broken bones, a broken jaw and a traumatic brain injury. He was also completely paralyzed. “I couldn’t move anything except my eyes,” he remembers. Ellis spent 30 days in an acute care hospital in Indianapolis before transferring to a rehabilitation hospital where he had his jaws unwired and began to eat solid food again. He also regained partial use of his arms, but his fingers still didn’t work. His hands were balled into fists.
During the next 29 days, Ellis had plenty of occupational and physical therapy and he was making significant gains in function when he got bad news. His insurance company wouldn’t pay for any more days in the rehabilitation hospital. He was going home. “I was pretty nervous and scared,” Ellis said. “They kept saying things like ‘drink enough fluids to avoid urinary tract infections’ and ‘do this to avoid pressure sores,’ but there was so much to remember. I was overwhelmed.”
There’s no question that length of stays in U.S. hospitals have shrunk dramatically over the last four decades as federal legislators passed legislation to rein in healthcare costs. In fact, the average time a patient with a traumatic spinal cord injury (SCI) spends in acute and rehabilitation hospitals went from a median of three to six months in the 1980s to six to eight weeks today. That’s much less time than someone with an SCI in the United Kingdom, Australia or even China would stay in a hospital.
Some healthcare policy experts argue that the trend toward shorter stays has forced American hospitals to become more efficient while maintaining high levels of quality care. Many advocates for people with disabilities, though, say that patients are being pushed out of hospitals too soon, resulting in preventable complications and making community reintegration more difficult.
Researchers at the Center for Rehabilitation Outcomes Research (CROR) at Shirley Ryan AbilityLab in Chicago examined how individuals with spinal cord injuries and their care partners perceived readiness for discharge after inpatient rehabilitation — and how their views differed from those of doctors and therapists. In 2024, CROR organized a series of focus groups: one made up of people with spinal cord injuries, another with care partners of people with SCI and a third made up of clinicians who treat people with spinal cord injuries. The focus groups lasted 90 minutes and were conducted via Zoom.The work was funded by the National Institute on Disability, Independent Living, and Rehabilitation Research (NIDILRR) as part of a $4.2 million project comparing lengths of stays internationally for people with spinal cord injuries.
The participants in the group of people living with SCI averaged 47 years old and most of them had received inpatient rehabilitation care from a hospital that specialized in spinal cord injuries. Forty-four percent of them were female and 67% were white. Among the care partners, the average age was 48, and 55% were female. The clinicians were a bit younger, averaging 41 years of age. They had an average of 13 years of experience.
Perhaps not surprisingly, there was a large difference in opinion among the three groups.
The people with SCI felt there “was a pervasive lack of preparedness for discharge, emotionally, physically, and logistically, often due to rushed timelines, limited education on post-SCI adjustment, and a lack of personalized support,” the researchers wrote in an article published recently in the journal Rehabilitation Psychology.
Most of the participants in the SCI group said they were discharged before they were confident they could independently manage daily activities such as inserting a sterile catheter and preventing pressure ulcers. They also said they experienced anxiety about medical complications and frustration that key topics were not explained thoroughly or weren’t covered at all. Many said that the education they received felt rushed and generic, and some said they felt “disengaged” from the discharge planning process.
Many care partners, on the other hand, believed they were fairly well prepared for their loved one to be discharged but found out they really weren’t after the person was home. Many of the obstacles they encountered were physical ones such as narrow doorways that couldn’t accommodate wheelchairs and inaccessible kitchen appliances. Harder to remedy were the emotional obstacles. Numerous care partners talked about the mental strain they experienced over the need to provide continuous attention to the person with SCI.
“We heard pretty consistently from people with SCI and their care partners that they didn’t feel as prepared as they would have liked about living independently,” says CROR director, Allen Heinemann, PhD, who led the research. “Equipment wasn’t delivered by their discharge date. Caregivers felt unprepared to deal with bladder and bowel management as well as transfers in and out of beds and cars. Some people were successful in figuring it out on their own and others struggled longer.”
The clinicians in the third focus group sympathized with the concerns that many people with SCI and their care partners expressed about being discharged from the hospital too soon. They talked about pressure from hospital administrators to arbitrarily set discharge dates and find ways to shorten length of stays based on national metrics rather than individual patient needs. “We can barely scratch the surface on some patients because the psychosocial adjustment piece just doesn’t happen in the timeframe that we have with them,” said one clinician in the group.
CROR researchers concluded that the discharge process for people with SCI in the U.S. could definitely be improved. They urged healthcare facilities to employ an “interdisciplinary team that sets individualized, holistic goals that consider not only patient and care partner preferences but also the need for outpatient and community services and environmental factors.” They also noted that smooth community reintegration for people with SCI is a complex journey that will always extend beyond a discharge date.
Ellis, now 28, was one of the people with SCI who participated in the patient focus group. He remembers that when he arrived home from the rehabilitation hospital, he had to be lifted in his power wheelchair to the porch of his house by family members and contractors because a wheelchair ramp was still being built. He also hadn’t been shown how to insert a catheter by himself, so he researched the internet to find one he could use without assistance.
But Ellis overcame the short-term obstacles he faced and was able to finish high school with honors and graduate from Vincennes University summa cum laude. Ellis now works in information technology at a U.S. government facility in Indiana. “I feel that my life today is not that much different than it would be if I did not have a spinal cord injury,” Ellis says. “I would tell someone with a new SCI that they should only compare themselves to the day before. Keep working on becoming better at everything every day. Life is what you make it, not what your circumstances are.”