Readers familiar with the concept of brain death will spot obvious errors in this news dispatch. The story suggests that a patient could be brain dead without being really dead. But if doctors actually diagnosed Flip Harrow as brain dead soon after the accident, he was dead—and should have been declared legally dead. He was no less dead than if his heart had stopped beating first. The story also intimates that the surgical removal of organs was the cause of death—in violation of the "dead donor rule" followed by all hospitals and organ procurement organizations—because brain death did not really count as death.

This account is an extreme but not isolated example of inaccurate reporting about brain death. Such stories perpetuate widely held misunderstandings. In one study, healthcare professionals, including physicians, displayed significant confusion about the concept of brain death and its application in practice.²

Such misunderstandings have real consequences. Families already in distress may suspect that the brain-dead patient is not really dead. Moreover, the terminological confusion contributes to ethical confusion. A brief review of the concept of brain death and factors behind its adoption can help frame these issues.

Physicians have long determined death by observing the absence of breathing and pulse and the fixation of the pupils. "Irreversible cessation of circulation and respiration," known as the "cardiopulmonary criterion" of death, tacitly presupposes that death entails the loss of the integrative functions of the brainstem, which are necessary for spontaneous respiration.

The advent of ventilators and vasopressor medications that could support cardiopulmonary functioning "artificially" for extended periods created two insistent questions. First, in cases where these technologies succeeded only in sustaining vital functions that would cease once technological assistance ended, then life support was, indeed, artificial. But how could clinicians be certain that death had occurred if the heart continued to beat?

Second, and ironically, this same technology could maintain organs for transplantation even when it could no longer benefit the patient. But organs could be recovered only after death. To safeguard the integrity of organ retrieval and permit life support technology to become organ preservation technology at the appropriate time, new criteria for determining death were required.

Eventually the term brain death—defined as the irreversible cessation of all brain function, including that of the brainstem—was accepted medically and legally as the neurological counterpart of the cardiopulmonary criterion. This whole-brain concept was preferred to the higher-brain concept that some advocated. In the higher-brain concept, irreversible loss of consciousness is the neurological criterion of death even when the brainstem sustains vital functions. This option proved problematic, since it could mean burying human beings who still have a pulse and breathe spontaneously.

Applying the brain-death concept in the clinic has proven challenging, both ethically and practically. Families may struggle to believe that a loved one who "looks so alive" because of technological support has actually died. And unclear or inconsistent communication by clinicians may compound family members' misconceptions about brain death.

Even using the terms brain death and brain dead can cause confusion. Distraught family members may infer that the brain is dead but the rest of the person is still alive. Staff members may unwittingly suggest that the patient is somehow less dead than he would be if the ventilator were removed.

A second problem arises when compassionate clinicians cushion the news of the brain-injured patient's death by equivocating in some way. They may refer to the patient as brain dead, yet ask the family when to discontinue the respirator. Or caregivers may fail to correct a family's obvious misimpression that the brain dead patient is still alive. They contribute to the confusion by speaking and acting in ways incongruent with the overt message of the patient's death.

In such communication, it is preferable to avoid the term brain death altogether. Instead, as neurological testing proceeds the physician may refer to "serious brain injury," and later to the possibility that the patient's brain no longer functions and, if so, the reality that the patient has died.

It is especially important that no clinician ask the family about discontinuing life support. There is no life left to support. Such an offer burdens the family with a pointless decision and delays appropriate grieving. The physician and other caregivers should simply inform the family that the respirator will be disconnected, unless a decision to recover organs is pending or has been made.

When physicians determine death by neurological criteria, they can convey this information both compassionately and clearly. Through their own consistent communication, staff members can reinforce this reality. If family members are helped to understand that their loved one has died, they can mourn without needless confusion or nagging questions.

For additional suggestions about communication and practice in such situations, see the Advocate pocket guide, Advance Care Planning: Raising End-of-Life Issues, now available in all Advocate hospitals.