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Families Understanding Brain Death

The concept of brain death is difficult for most families to comprehend. However, it is important for families to understand that their loved one is dead before they are offered the opportunity to make decisions about donation. The following communication points may be useful in helping families understand brain death.

  • Provide frequent updates about the patient’s condition throughout the hospitalization.
  • Ensure that all hospital staff give clear and consistent information to the family. It is important for all hospital staff to know what the family has been told about their loved one’s condition.
  • Use visual aids (e.g. cerebral blood flow exam, cerebral angiogram or electroencephalogram) to describe the brain injury and death. Visual aids help the family understand what they cannot see, since the patient’s body remains warm and normal in color while maintained on the ventilator.
  • After declaration, refer to brain death as “death,” and tell the family the time of death. The patient is not in a coma. Refer to the ventilator and intravenous medications as “artificial or mechanical support.” Be aware that talking to the patient during care may mistakenly lead the family to believe their loved one can still hear and comprehend.
  • Use the word “death.” Avoid commonly used euphemisms (passed away, gone, expired) in your conversation about the death.
  • Encourage the family to ask questions and express their understanding of their loved one’s death. Allow moments of silence. Try not to fill in gaps in conversation with meaningless words or explanations.
  • When feasible, allow the family to observe parts of the neurological exams. Explain the medical equipment and its function in the care of their loved one.
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