New guidelines on assessing consciousness indicate a better prognosis for some patients than previously thought. This information could change how decisions on continuation of care are made.

• Twenty percent of traumatic brain injury patients could recover consciousness.

• A large majority of these patients die from discontinuation of care.

• Risk managers should anticipate challenges from families in light of the new guidance.

New guidelines on how to determine consciousness could affect how healthcare organizations address legal questions regarding intensity of care, discontinuation of care, and end-of-life decisions. Risk managers should be familiar with the changes and anticipate challenges from family members.

New research suggests that chance for recovery for some of these patients is better than previously thought.

The guidelines update the 1995 American Academy of Neurology (AAN) practice parameter on persistent vegetative state and the 2002 case definition on minimally conscious state (MCS) and provide care recommendations for patients with prolonged disorders of consciousness (DoC). Developed by the American Academy of Neurology in association with other professional organizations, the guidelines were published recently in the journal Neurology(An abstract is available online at: https://bit.ly/2B5pacp.)

Initial Diagnosis Is Key

The guidelines are divided into four subsections: diagnosis, prognosis, natural history, and treatment. Each section contains information that is pertinent to decisions regarding withdrawal of care, says lead author Joseph T. Giacino, PhD, director of rehabilitation neuropsychology and research associate at Spaulding Rehabilitation Hospital in Boston.

“It is essential to get the diagnosis right. We know that about 40% of people with disorders of consciousness are misdiagnosed,” he says. “That means someone has made the diagnosis that this person is not conscious, but this person does retain some level of conscious awareness. We also know that patients in minimally conscious states, relative to those in vegetative states, have significantly more favorable outcomes, particularly when they are diagnosed early.”

However, the difference between those two states can be very subtle. The signs can be missed and the patient easily can be misdiagnosed as being in a vegetative state. Understanding that is key to ensuring proper care and the accuracy of future decisions regarding continuation of care, Giacino says.

“It’s complex, not an easy differential diagnosis to make,” Giacino says. “These patients in a minimally conscious state do not show consistent signs of consciousness, so one might do a one-off examination and not show any signs of consciousness. But if one were to return to the bedside an hour later, you might find signs of consciousness.”

That is why the new guidelines call for “serial examinations” to assure the diagnosis is accurate, he explains. They also call for the use of standardized assessment scales, getting away from the current practice in which two different examiners may assess the patient with their own preferred tests and criteria using their own judgment to determine what qualifies as a response from the patient, he says.

“These standardized tools remove that subjectivity, to some extent, because they determine what tests should be administered and the criteria for what qualifies as a response,” he says.

Better Prognosis Than Before

Regarding prognosis, the guidelines note that the most recent research indicates the potential for late recovery is substantially better for patients with prolonged DoC than was previously understood.

“About 20% of those who have traumatic disorders of consciousness — a head injury from car accidents or falls, for instance — regain functional independence between two and five years post-injury,” Giacino says. “They get substantially better over a longer period of time than was previously understood. We now know that one in five people in that group are going to get a lot better.”

The question is which one, he says, and research has not yet pinned down the characteristics that could identify him or her.

“It’s essential to avoid statements dealing with family members of patients with prolonged disorders of consciousness suggesting a poor prognosis for these patients. There is still an air of nihilism around these individuals,” he says. “They remain minimally conscious for that period of time and people view that as the point of no return, but that is clearly not the case, particularly with traumatic brain injury.”

Those new facts are particularly important given that research from one study shows that, for traumatic brain injury patients, 70% of the deaths in the ICU were related to withdrawal of life sustaining therapy, Giacino says. (The study is available online at: https://bit.ly/2Mvd5xE.)

“The really compelling finding was that for about 65% of the patients who had care withdrawn, the decision to do so was made within 72 hours of admission,” he says. “You put those two things together and have these high rates of withdrawal of care alongside the knowledge that one in five of them will, with proper care, get to the point that they can function independently at home. That’s a problem for us now to deal with.”

Review Hospital Guidance

The new guidelines also call for abandoning the term “permanent vegetative state,” which was introduced in the 1995 guidelines. The term “chronic vegetative state” is less absolute and less likely to discourage continuing care.

For these patients, the guidelines say families should be told that the person is not fully conscious and there is a time period in which that could change, but they also should be told that there will be a point when there is a higher level of certainty that the condition will not change.

Giacino suggests that the new guidance could necessitate a review of a hospital’s or health system’s policies or guiding principles on how to make decisions regarding continued care for patients with DoC.

“These guidelines should prompt a lot of careful consideration now on how to make these decisions. We still don’t know how to identify which patients will recover with the proper care, but the approach needs to be systematic,” Giacino says. “A team working the ICU should be approaching this the same way.”


• Joseph T. Giacino, PhD, Director of Rehabilitation Neuropsychology and Research Associate at Spaulding Rehabilitation Hospital, Boston. Email: jgiacino@mgh.harvard.edu.