There's a difference between being in a coma and a vegetative state. The stories confusing the two are hindering organ donor education.
A day rarely goes by that I don't read a few sensational headlines: "Man Declared Dead Feels 'Pretty Good'" or "Husband Celebrates Miracle as 'Brain Dead' Wife Wakes Up in Hospital." I recently read an article that seemed to describe a man on death row in Huntsville, Texas. It attempted to shock its readers with the claim that a college student had been declared brain dead and "just hours before he was slated to be killed and his organs given to another patient," he miraculously recovered. That's right, they said "killed."
As a neurologist who specializes in brain injury, I have cared for many brain-injured patients and there were times when they did better than I anticipated, but sensational articles like these only confuse the public. During the health care legislation debates, the mere mention of insurance coverage for consultation on end-of-life decisions brought forth hysterical cries of "death panels" from people like Sarah Palin who exhorted that "my parents or my baby with Down's Syndrome will have to stand in front of Obama's 'death panel'...." But if the headlines are fiction, what is the truth?
HOW OUR BRAIN ACTUALLY WORKS
Brains are far more complex machines than even the most sophisticated computer. We turn on our computer with a simple switch. The screen entertains us as it boots up and we start to check our email, linger on Facebook to catch up with friends, or read the latest headlines. Have you ever wondered what your brain is doing in the early morning as you awaken to your automatic coffeemaker brewing that first cup of joe?
The main part of our brain, the cerebrum, sits inside our skull and is attached to our spinal cord by the small, but critical, brain stem. Inside the brain stem is a small, but critical, group of nerve cells known as the Reticular Activating System (RAS) that send messages up into the brain, not only to wake us up, but also to keep us alert. We call this process arousal -- no, not that tingling that you get when you kiss the man or woman of your dreams, but stimulation that keeps you awake. But just being awake isn't enough.
We need an intact upper brain to be aware of ourselves and our surrounding environment. Awareness is a higher-level function that requires areas of the cerebrum to process the information we see and hear. A patient may have their eyes open and look like they're awake, but if the brain is severely damaged they may have no awareness of their surroundings. We call this a vegetative state.
On the other hand, people who are in a coma are not awake and have no awareness of themselves or their environment. You can talk to them, pinch them, show them pictures of their family -- they will not respond. However, these patients are not brain dead. This is the source of the confusion that leads to the sensational headlines and stories.
In 1976, Karen Ann Quinlan was in a vegetative state, but lived for nine more years after her ventilator was discontinued. Theresa Schiavo had been in a vegetative state for 15 years. After a protracted legal battle her husband was granted permission to withdraw her nutritional support and she died. Both young women, like the people in the headlines, were not brain dead. People in a vegetative state usually have extensive brain damage, but may blink their eyes and look around, breathe on their own, yawn, chew, and even withdraw their arms or legs to painful stimulation. They are not brain dead, and no one is going to take their organs.
WHAT, EXACTLY, IS BRAIN DEATH?
What is the difference between someone in a coma, who may or may not improve, and someone who is truly brain dead and may be a candidate to donate their organs? Brain death is the irreversible cessation of all functions of the entire brain, including the all-important brain stem that houses the RAS and the mechanism that controls our breathing. Dead is dead. Brain death isn't a different type of death, and patients who meet the criteria of brain death are legally dead.
There are strict criteria for brain death and these criteria (PDF) are carefully followed before a patient becomes an organ donor or their ventilator is unplugged. They must be in a coma with no brain stem or pupillary reflexes. They do not breathe on their own when taken off their ventilator, and an electroencephalogram (EEG) records a complete absence of brain activity. Although most states only require the diagnosis of one physician, the patient's family can always ask for a second opinion.
NO CAUSE FOR CONCERN
The sensational headlines hinder our efforts as physicians to educate the public about organ donation and cause unnecessary anxiety for families who are considering donating their loved one's organs. No one who has met the criteria for brain death has ever survived -- no one. It can be difficult to predict a person's outcome after a severe brain injury, but it can be said with certainty that a brain dead individual is dead, the same as if their heart was not beating.
In most hopeless situations, our society's current default is to continue all medical measures unless otherwise clearly stated. At the same time, there is a move afoot in state capitols to pass legislation that would make the withdrawal of nutrition and hydration impossible unless it is specifically stated prior to injury. As of 2007, only 41 percent of people had a living will and both living wills and advanced directives tend to be very general. Now is the time to sit down with your family and discuss what you want done if you were in a hopeless situation or brain dead. There is still a critical shortage of organs available for donation. If the concept of brain death is keeping you from becoming a donor, you can check that off your list and sign up now.