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12/04/2015

The Bell Tolls for Death by Neurologic Criteria: Aden Hailu

by Craig Klugman, Ph.D.

A judge in Reno, Nevada this week denied a request by St. Mary’s Regional Hospital to conduct an evidentiary hearing to determine that a patient is dead. Aden Hailu was a 20-year-old student at the University of Nevada, Reno (UNR) when she was hospitalized April 1 with abdominal pain. During exploratory surgery, she had a heart attack that led to low blood pressure and lack of oxygen to the brain. Hailu never awoke. A ventilator is now maintaining her body, an IV introduces fluids and nutrients, and medications are maintaining blood pressure.

In mid-April, doctors declared her dead by neurologic criteria (brain dead). Brain death means that the patient has failed such medical tests as apnea (can the patient breathe on her own without mechanical assistance) and response to painful stimuli. When a person is dead, normal practice is to remove the body from sustaining measures and/or to donate organs to other patients. And that was the hospital’s plan on July 2 until the family went to court and stayed that action.

Hailu’s family claims that she is not dead and that the hospital wants to get rid of her because of money. As evidence they support EEGs of the brain taken before the declaration of death. The family has a GoFundMe campaign that has raised nearly $37,000.

In July, a county court ruled that the hospital could remove the ventilator and an IV tube but on appeal, the Nevada Supreme Court overturned that ruling (November 16). The higher Court ordered the lower court to determine whether the standard of medical practice and American Association of Neurology guidelines in determining death conform with Nevada law. That law requires that death be determined “in accordance with accepted medical standards.” In 37 states including Nevada, death is determined based on the Uniform Determination of Death Act written by the Uniform Law Commission in 1980. The law holds that death can be determined by “irreversible cessation of circulatory and respiratory functions” or “irreversible cessation of all functioning of the brain, including the brain stem.” The test to make this determination should follow “accepted medical standards.”

In 2010, the American Association of Neurology (AAN) published its updated guidelines on accepted medical standards for testing for death. For death by neurologic criteria, this means “presence of unresponsive coma, the absence of brainstem reflexes, and the absence of respiratory drive after a CO challenge. To ensure that the cessation of brain function is ‘irreversible,’ physicians must determine the cause of coma, exclude mimicking medical conditions, and observe the patient for a period of time to exclude the possibility of recovery.”

As someone who taught bioethics at UNR for 7 years and worked with Nevada state offices on end-of-life issues, this case seems to be another family in grief that cannot accept a beloved daughter has died, and a government that has decided to make medical decisions.

Hailu reminds me of another recent court case, Jahi McMath in Oakland, California. McMath was declared dead after complications from surgery. Her mother refused to accept neither the death determination by experts nor the coroners’ death certificate. She took Jahi’s body to New Jersey, which has en exception to the Uniform Law: If a family has religious or philosophical objections to death by neurologic criteria, then they can use the cardiovascular standard. Court hearings in California are awaiting the presentation of evidence to back the family’s claim that Jahi is alive and the death certificate should be rescinded.

Or one could even look back to the 14-year saga surrounding Terri Schiavo whose parents rejected the diagnosis of a persistent vegetative state and in a very public case tried to maintain their daughter’s artificial nutrition and hydration against the wishes of Terri’s legal guardian–her husband Michael. In 2005, after several court hearings at both state and federal levels, Michael was permitted to consent for the removal of her feeding tube. Despite her parent’s claims that Terri could track objects with her eyes and listen to commands, an autopsy found that she lacked an optic nerve (meaning she could not see) and 50% of her brain had been reabsorbed (meaning that she was incapable of following directions).

All three cases concern young women who experienced sudden and unexpected tragedies. In McMath and Hailu, the patients have been diagnosed as dead by standard medical tests. The death of a loved one, especially when they were healthy before hospitalization is difficult to understand, nevermind, accept. But judges, elected officials and lawyers are not trained in medicine. Doctors are. And doctors determine if a person is dead.

What is important in all of these cases is money—if the body maintained was dead, then the family is responsible for all costs. If the body is found to be alive, then insurance and pubic assistance would be responsible. Plus if there were lawsuits in these cases, a living patient with a lifetime of care needs could net more money than one who is dead.

In the longer term, such a finding could lend doubt to every determination of death since 1980. That also means the end of organ donation from the dead because death could then only be declared once a body began to decay.

These cases brought private, family issues to a national stage. They properly should be settled through an ethics committee in the hospital that can facilitate conversations between health care practitioners and family members. The families need grief counseling and support, not an attorney supporting their denial of reality.

The county judge scheduled hearings for end of December and the end of January. In the meantime, the family has asked for a feeding tube, nutrition, and thyroid medication for their daughter. Such actions would provide no benefit to a deceased body. The hospital wants to force the father to consent to tests that would confirm death, an action that he has refused even though the family has cited the lack of such tests post death declaration as a reason to believe Hailu is still alive. However, if the confirmatory tests were performed, then the family might have to face the death of their loved, something they seem unwilling or unable to do.

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