New Film Challenges Misconceptions About Disorders of Consciousness and Recovery
In This Article
- Current guidelines for recovery from TBI and disorders of consciousness focus on the first few weeks to a year after injury, leading to low expectations for patients who don't recover quickly
- However, studies show that the trajectory of recovery is much longer, and patients can continue to improve 10 to 15 years after injury
- Joseph Giacino, PhD, discusses a documentary about patients whose recovery is either much longer or much shorter than conventional expectations
The management of patients experiencing coma, vegetative state, and other disorders of consciousness (DoC) presents important and complicated questions for clinicians. How long will recovery take? What will recovery look like? When is it appropriate to withdraw life-sustaining care?
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A new documentary, "Recovering from Disorders of Consciousness," sheds light on these issues while following two patients on very different recovery trajectories. The short film features insights from rehabilitation specialists and neurologists at the Spaulding-Harvard TBI Model System (SH-TBIMS).
Joseph T. Giacino, PhD, SH-TBIMS project director, wants the film to help correct misconceptions—and reset expectations—about recovery for patients with traumatic brain injury (TBI) and DoC.
"When someone with TBI initially appears catastrophically injured and looks irrecoverable, there's a sense of nihilism if they don't awaken and become responsive during their 14 days or so in the ICU," he says. "We start to think it's too late; there's no hope for a meaningful recovery. That's flatly wrong."
Covering the two extremes in the recovery trajectory
The SH-TBIMS is one of 16 centers that the National Institute on Disability, Independent Living, and Rehabilitation Research selected to receive federal funding for TBI research for the 2022-2027 funding cycle. The Model System Knowledge Translation Center (MSKTC) is responsible for translating research findings from these 16 centers into lay-friendly language for people living with TBI and their caregivers.
Each year, the MSKTC and WETA-TV, a public broadcasting station in Washington, D.C., commission a film on a topic related to the MSKTC's mission. After selecting DoC as the focus for this year's film, the two organizations invited SH-TBIMS to collaborate on the project.
"Recovering from Disorders of Consciousness" features two young adults with TBI who received intensive care at Massachusetts General Hospital and rehabilitative care at Spaulding Rehabilitation Hospital Boston. Hannah was in a near-fatal car crash in 2020 that caused devastating injuries and left her unconscious for weeks. Theo was injured in a downhill skiing accident that also resulted in loss of consciousness. However, he recovered quickly and was able to communicate with others within weeks of his injury.
"We were trying to cover the two extremes in terms of recovery," Dr. Giacino says. "When it comes to DoC, you have some patients who take months to years to recover and others who get back or close to their baseline much faster."
The documentary focuses primarily on Hannah, who has had a much longer road to recovery than Theo. Following six days in a Florida ICU, she was airlifted to Mass General in a medically induced coma. Her long-term prognosis was unknown, but her family and care team didn't make the mistake of giving up on her.
"The most frequent cause of death in someone who has had a traumatic brain injury is withdrawal of life-sustaining treatment," Dr. Giacino says. "The median length of time to this decision is about 72 hours. That's alarming because we don't have predictors of recovery that are anywhere near accurate enough to support that decision."
Prompt treatment upon arrival at Spaulding Boston
After showing encouraging signs at Mass General, Hannah was transferred to Spaulding Boston. Her recovery continued there under the watch of the Disorders of Consciousness program, which Dr. Giacino leads. Although Hannah was only minimally conscious, the team began treating her right away. Her care included the use of a tilt table to help her body acclimate to being more upright again.
According to Dr. Giacino, a federal regulation issued by the Centers for Medicare & Medicaid stipulating that a patient must be able to actively participate in three hours of intensive rehabilitative services per day can make it difficult to obtain authorization for admission to an inpatient rehabilitation program. Many commercial payors also adhere to that guidance.
"What happens if you have a disorder of consciousness? You can't actively participate in rehab, so you're out of luck—you're not getting into inpatient rehab," Dr. Giacino says. "Even though there's no evidence to support this rule, it's one of the main reasons that less than 15% of people with moderate-to-severe TBI ever get into inpatient rehab. The rest are generally discharged to long-term care and skilled nursing facilities, which typically lack staff with the knowledge and skills to provide the specialized care required."
The film captures major milestones from the almost five months that Hannah spent at Spaulding Boston, from squeezing her father's hand to regaining consciousness and talking again. It also covers her return home, where she received at-home care from Spaulding Rehabilitation. Hannah now lives on her own and has worked several summers as a rehabilitation aide at Spaulding Outpatient Center in Plymouth.
About 1 in 5 people who suffer a severe TBI will regain their functional independence like Hannah. But the trajectory of recovery is much longer than is traditionally thought.
"The old wisdom was that you had a 12-month window to recover following a traumatic brain injury; after that, your brain doesn't get any better," Dr. Giacino says. "We now know that isn't true. We now have studies that go out 10, even 15 years post-injury that demonstrate a significant portion of these patients are still improving.
"Too many people don't know the facts, and that drives ill-advised decisions to withdraw life-sustaining treatment after 72 hours when we have no business doing so."
"Recovering from Disorders of Consciousness" is available at MSKTC.org (which also includes 19 short video interviews exploring key DoC-related topics) and on YouTube.