One study suggests waiting longer before withdrawing life support

When a patient with a severe traumatic brain injury is in a coma, in intensive care, unresponsive and on a ventilator, but not brain dead, when is it time to withdraw life support? A small study on the fate of people in such situations suggests that doctors and patients' families might make better decisions if they waited even a few days longer than usual.

Often, a doctor meets with family members within 72 hours of the patient's admission to the ICU 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 outlook as grim: most likely death or severe disability. Results reported on patients who have had severe traumatic brain injuries show that most of the time the decision is to remove life support. The patient dies.

The researchers behind the new study say their limited data suggests that doctors' predictions so soon after injury are often wrong.

The study, published Monday in the Journal of Neurotrauma, used a national database that included 1,392 patients with traumatic brain injuries.

Analyzing the data, they ended up comparing 80 severely injured patients who died after life support was withdrawn, with 80 similar patients whose life support had not been withdrawn.

In their analysis, the researchers found that most patients who were maintained on life support died in the hospital anyway, within about six days. But the 42% who continued life support recovered enough in the following year to have some degree of independence. Some even returned to their previous lives.

Despite the study's limitations, “this data is really useful,” said Dr. Walter Koroshetz, 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, originally funded the database used by the researchers, but is now funded with grants from multiple sources.) The longer the family waits to decide, the better the doctors' prognosis , he noted.

Uncertainty, however, is always present.

Doctors know, Dr. Koroshetz noted, that recovery is slow and usually lasts months or even years. But, he said, some patients who needed ventilators and were expected to lead lives of extreme disability enter the hospital a year later “talking to the nurses.”

“That's the problem,” he added. “People can get a good shot.”

But these are the rare exceptions. Most of those who survive end up with permanent disabilities.

Recovery is not easy. Patients often have to spend months in rehabilitation centers, and for some, the final destination may be a nursing home.

There is nothing scientific about making a decision within 72 hours, said Dr. Claude Hemphill of the University of California, San Francisco. That time frame became a convention because he, he said, “these people look very sick when they come in.” As a result, he added, “many doctors felt forced to make a decision in advance.”

Dr. Hemphill was part of the research team that provided the data, but did not enroll patients or analyze them for the study.

Yelena Bodien, a neuroscientist at Massachusetts General Hospital and Spaulding Rehabilitation Hospital, said she and her colleagues were motivated to conduct the study based on their own experiences.

Families visiting patients at the rehabilitation center told her that doctors would say, “Your loved one will never be able to walk, talk or go back to work,” she said.

But her colleagues had a different perspective, telling her: “If we don't make a decision early, we could be committing these patients to a life they don't want.”

He said he saw the problem.

“Doctors find themselves in an extremely difficult situation. Patients are on the brink of life or death with incredibly devastating injuries,” she said. “Doctors are under enormous pressure to provide families with an accurate diagnosis.”

Families are asked what kind of life the patient would accept. There may not be an easy answer. While healthy people may say that a life with a severe disability would be completely unacceptable, researchers talk about the “disability paradox”: Often when people become disabled, they report still having a meaningful life.

This is important in counseling families, Dr. Hemphill said. This means that doctors must be humble not only about the uncertainty of prognosis, but also about what kind of life is acceptable.

He hopes doctors take the new study to heart.

“Doctors need to have an open mind,” he said. “Maybe the truth based on the data is a little different than what we were taught in medical school 20 or 30 years ago.”

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