If a patient with severe TBI is in a coma, in intensive care, unresponsive and on a ventilator, but is not brain dead, when is it time to remove life support? A small study of the fate of people in this situation suggests that doctors and patients' families may be able to make better decisions if they wait even a few days longer than usual.
Doctors often meet with family members within 72 hours of a patient's admission to the intensive care unit to discuss the patient's prognosis and whether they want to keep their loved one alive or remove life support.
Experts say many doctors would describe the future as bleak, possibly death or severe disability. Reported outcomes for patients with severe TBI indicate that in most cases the decision is to remove life support. the patient dies.
Researchers behind the new study say limited data suggests that doctors' predictions immediately after an injury are frequently wrong.
The study, published Monday in the Journal of Neurotrauma, used a national database that included 1,392 traumatic brain injury patients.
After reviewing the data, the researchers ended up comparing 80 seriously injured patients who died after life support was removed with 80 similar patients whose life support was not removed. .
In their analysis, the researchers found that most patients who were kept on life support died within about six days in the hospital anyway. However, 42% of those who remained on life support recovered to some degree of independence the following year. Some have returned to their old lives.
Despite the study's limitations, “this data is really helpful,” said Dr. Walter Korosietz, director of the National Institute of Neurological Disorders and Stroke, who was not involved in the study. (The institute, part of the federal National Institutes of Health, initially funded the database used by researchers, but is now funded by grants from multiple sources. ) The longer the family waits for a decision, the better the doctor's prognosis. he pointed out.
But uncertainty always exists.
Dr. Koroshetz noted that doctors know that recovery is slow, typically taking months or even years. But some patients who needed ventilators and were expected to live a life of extreme disability are still coming to the hospital a year later after “talking to the nurses,” he said. Told.
“That's the problem,” he added. “People can recover well.”
But those are rare exceptions. Most survivors have permanent disabilities.
Recovery is not easy. Patients often have to spend several months in a rehabilitation center, and for some their final destination is a nursing home.
Dr. Claude Hemphill of the University of California, San Francisco, said there is no scientific basis for making a decision within 72 hours. That time frame is customary because “when these people come in, they look really sick,” he says. As a result, “many doctors feel they have to make decisions early,” he added.
Although Dr. Hemphill was part of the research group that provided the data, he did not enroll or analyze patients for the study.
Elena Bodien, a neuroscientist at Massachusetts General Hospital and Spaulding Rehabilitation Hospital, said she and her colleagues were motivated to conduct this study based on their own experiences.
Families visiting patients at the rehabilitation center told her that doctors would tell them, “Your loved one will never be able to walk, talk or return to work.”
But her colleagues had a different view, telling her, “If we don't make a decision early, we may end up pushing our patients into a life they don't want.''
She said she could see the problem.
“Doctors are in a very difficult situation. Patients are incredibly injured and on the brink of life or death,” she said. “Doctors are under tremendous pressure to provide accurate diagnoses to families.”
Families are asked what kind of life the patient accepts. There may be no easy answer. Healthy people may say that living with a severe disability is completely unacceptable, but researchers speak of the “paradox of disability.” People often report that they still lead meaningful lives even after becoming disabled.
That's important when advising families, Dr. Hemphill says. That means physicians must be humble not only about the uncertainty of prognosis, but also about what kind of life is acceptable.
He hopes doctors take this new research to heart.
“Doctors need to be open-minded,” he says. “Maybe the data-based truth is a little different than what was taught in medical school 20 to 30 years ago.”