Premature Withdrawal of Life Sustaining Treatment for People in Disorders of Consciousness

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How do doctors approach the decision to withdraw life-sustaining treatment for people in disorders of consciousness?
With Joseph Giacino, PhD

Lower Third
Joseph Giacino, PhD
Project Director,
Spaulding-Harvard Traumatic Brain Injury Model System

One of the, I think, most concerning issues faced by patients with disorders of consciousness and their families is that there is a rush to judgment that occurs, not just in the United States, but in many places in the world, where there is the need to make a decision about whether we're going to treat this person aggressively after the severe injury. And, again, we're talking about people who are not responsive. Or we're going to let the person, nature take its course and in all likelihood the person die because we're not going to intervene. So the problem is that that decision most often gets made within 72 hours of injury. Part of the reason for that is that there's a reticence to make decisions about putting a tracheostomy in to help with breathing or a g-tube in to help with feeding after that decision is made.

The mean time to a decision to withdraw life sustaining treatment is 72 hours. And withdrawal of life sustaining treatment after traumatic brain injury is the most common cause of death. So most people who die after TBI die because life sustaining treatment has been withdrawn. The problem is that the neurobiology of recovery doesn't follow that timeframe. We know now that it takes substantially longer than 72 hours for people to begin to express signs of consciousness. They're just not there yet. The brain's not ready to manifest those signs. It's still in the period of spontaneous recovery, but it's premature. So we have a situation where operationally we're making the gravest decision one can make about a human being in a timeframe that doesn't match the biology of recovery.

One way to combat that is through awareness that, making sure that providers are aware that even though the patient is not responsive that early on, there is time. There is substantially more time for them to show improvement. And we're not talking about, again, in many cases, subtle improvement, nuance. We're talking about major changes in function that those individuals can show, again, getting to the point where they can live independently at home. They may still have trouble getting back to work or school. Some may not ever do that, but they're engaged socially. They're back into the flow. But we can't figure out whether a given person is going to be able to do that or not do that within 72 hours. But it is the mean time to that decision.

So on average it is 72 hours from the time of injury to making a decision to withdraw life sustaining treatment. That is way too early. We haven't taken enough time yet allowed enough time for that individual and that individual's brain to express its ability to recover. We know that the timeframe is much longer than that. So we have to do a better job in matching up the neurobiology with the demands on healthcare systems to make sure we can provide treatment to everybody comes through the door. Anybody who's in a bed at any given time means that somebody else can't be in that bed. So we do have to deal with that throughput problem, but not at the expense of an individual who has a decision to withdraw life sustaining treatment prematurely made.