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SALT LAKE CITY — No rule exists that says when families must decide whether to remove life support for a loved one with a traumatic brain injury. But at 72 hours, some hospitals' staff members start pressuring families to make decisions about stopping life support interventions.
That may be too soon, cutting short some lives that might have "recovered some level of independence" within months of injury, according to research from Mass General Brigham published in the Journal of Neurotrauma.
In a release, Mass Brigham reported that severe traumatic brain injury is a "major cause of hospitalizations and deaths around the world, affecting more than 5 million people a year." The researchers acknowledge that it's hard to predict who will recover and to what degree, "yet families are asked to make decisions about continuing or withdrawing life-sustaining treatment within days of injury."
None of the research or the study findings apply to patients who suffered brain death.
The researchers noted that families are more likely to choose to end life support when a health care provider offers a prognosis of brain damage or poor neurologic function than for other reasons. "However, there are currently no medical guidelines or precise algorithms that determine which patients with severe (traumatic brain injury) are likely to recover," according to the research.
Matched pairs, different outcomes
The researchers studied the issue by using seven-and-a-half years of data from 1,392 patients in intensive care units at 18 U.S. trauma centers. Each of the people had sustained a traumatic brain injury and been placed on some kind of life support, such as a ventilator, to breathe. From that, they looked at demographics, socioeconomic factors and the injury itself to create a mathematical model "to calculate the likelihood of withdrawal of life-sustaining treatment."
They then winnowed the large number of cases down to 80 matched pairs of people with similar patients, one from whom life support was removed and the other who continued on life support.
"We found that a significant proportion of patients who died after life support was removed may have died anyway, even if their life support had been continued," study investigator Yelena Bodien, of Massachusetts General Hospital, Spaulding Rehabilitation Hospital and Harvard Medical School, told Medscape Medical News.
"But the remarkable and unexpected finding was that among patients who were estimated to have survived if life support was not withdrawn, as many as 40% were predicted to recover some level of independence by six months after injury," she added.
Importantly, the research showed one of the potential dreaded outcomes of severe traumatic brain injury, "remaining in a vegetative state was an unlikely outcome by six months after injury," even in those with severe injury. Lower severe disability is not common, either.
A few of the brain injury patients made robust recoveries and returned to their former lives.
Per the release, "The findings suggest there is a cyclical, self-fulfilling prophecy taking place: Clinicians assume patients will do poorly based on outcomes data. This assumption results in withdrawal of life support, which in turn increases poor outcomes rates and leads to even more decisions to withdraw life support."
"Our findings support a more cautious approach to making early decisions on withdrawal of life support," said Bodien in a prepared statement. "Traumatic brain injury is a chronic condition that requires long-term follow-ups to understand patient outcomes. Delaying decisions regarding life support may be warranted to better identify patients whose condition may improve."
About the study
In the study, 75% were men admitted to the intensive care unit for severe brain injuries. On average, those with life support withdrawn were older than those where it was not, 59.2 years old versus 43.5. Withdrawal of life-sustaining equipment was less common among Black participants, compared to Asian participants. It was also less common among Hispanics, compared to non-Hispanics of all races.
The study found by the one-year mark, most of the patients had either died (most often during acute hospitalization) or achieved at least some degree of independence.
Is that good enough? The study acknowledged that the prior expressed wishes of a patient are important, and some would not choose a particular outcome if they could decide.
"The relationship between functional recovery and quality of life, which may be a more meaningful outcome measure, is complex, especially in the absence of pre-injury data," the report said. But it added that even among those who don't regain independence, "a substantial proportion ... nevertheless report normative quality of life."
Take some time
Despite limitations like being a very small study, Dr. Walter Koroshetz, director of the National Institute of Neurological Disorders and Stroke, who was not involved with the study, told The New York Times that "this data is really helpful."
He said the longer the family waits to decide about withdrawing life support, "the better the doctors' prognostication will be," per the Times.
He, too, noted challenges with predicting final outcomes. Koroshetz told the Times that recovery can take months or years. Then again, sometimes a patient who was on a ventilator and was predicted to be extremely disabled walks in a year later "chatting it up with the nurses."
Those are, however, the exceptions. As the article noted, most do end up with permanent disabilities.
