Families chafe at physicians' power to give up
The Atlanta Journal-Constitution
Published on: 02/10/08
Nonnie Hawkins remembers standing beside her daughter's hospital bed, steeling herself for a final goodbye.
She turned to physicians at DeKalb Medical Center, who minutes earlier had disconnected a machine that was breathing for 18-year-old Tara Bottoms-Hawkins. Hawkins thought her daughter was in a coma, as she had been for four months. But doctors said the young woman was brain-dead.
It was March 18, 2004, two days after Tara gave birth to a premature son, bucking the predictions of some doctors who said the fetus wouldn't survive.
Hawkins said she looked at the four doctors, the hospital administrator and the respiratory therapist. She called each of them by name. She thanked them individually for everything they had done to bring her grandson, Emmanuel, into the world.
Then she told them, "Tara's blood is on your hands, because you just killed my child."
Hundreds of people die daily in Georgia, almost all before they're declared brain-dead. That designation usually comes into play when a person suffers a traumatic injury or stroke and is attached to devices that maintain organ function.
When doctors determine the brain is not working anymore, families and hospitals usually agree that life support should then be removed, said Dr. Richard W. Cohen, chairman of the ethics committee for Wellstar Health System for more than 20 years.
Sometimes, however, the family disagrees with the diagnosis.
That was the case with Nonnie Hawkins. Hawkins says her daughter was alive and responding —- albeit minimally —- to people in the hospital room. On one occasion a doctor had noticed Tara was breathing over the ventilator on her own.
The hospital kept Tara on the ventilator for four months —- as long as her unborn baby was alive. They couldn't perform certain tests to determine the extent of Tara's brain damage without damaging the fetus, said Hawkins' attorney, John Crongeyer.
After Emmanuel was born, however, doctors evaluated Tara several times over the next two days. They determined that she was brain-dead, but Hawkins was not convinced.
About 10 minutes before her daughter was taken off the ventilator, Hawkins says people were gathered around the bed praying and pleading aloud "Please wake up, the baby needs you," when Tara moved her hand. When Hawkins went to get the neurologist, he said it was just a reaction from the spine, she said.
"It was like their mind was already made up," Hawkins said. "There was nothing besides Tara opening her eyes and sitting up that she could've done to stop them from taking her off life support."
Hawkins filed a lawsuit against DeKalb Medical Center, the doctor and DeKalb Neurology Associates on May 15, 2006, on behalf of her grandson. The lawsuit alleges medical malpractice, wrongful death and negligence. Hawkins said she never consented for the hospital to take her daughter off the ventilator.
At the crux of the case is whether Tara was brain-dead or just brain-damaged.
Georgia law leaves the final decision on discontinuing treatment for brain-dead patients to doctors, not family members.
DeKalb Medical Center tried to have the case dismissed, but the Georgia Court of Appeals said no, noting that for "incompetent adult patients" who may have some brain function remaining, the decision to terminate life support rests with the family.
The court has not yet ruled whether Tara's brain had ceased functioning, or whether a glimmer of life remained.
DeKalb Medical Center maintains she was brain-dead, and that the decision to stop treating her was appropriate.
The medical center appealed to the state Supreme Court.
"While we grieved with the family, the patient's death was determined by powers far greater than we possess prior to the discontinuance of treatment," the hospital's statement says. "In this case of a brain-dead patient, where there was no life present, we followed the guidance of Georgia law."
Beyond that, the hospital declined to comment for this story.
From a legal standpoint, being brain-dead is the same as being dead.
Before a patient can be declared brain-dead, two doctors must evaluate the patient on two occasions.
Dr. Michael Hartman, a neurologist at Emory Eastside Medical Center, routinely removes patients from machines that support organ function after he declares brain death.
Hartman said the physicians have to make the tough decisions when families can't.
"If you let them take control, they will never let go," Hartman said. "I realize this lack of control families must feel when we go in, but it's part of the job."
Hawkins' lawyer, Crongeyer, says that stance is "kind of a scary [thing]."
"There seems to be a misconception by some health providers that once they make a brain death determination, there is no power left that the family holds," Crongeyer said. "You can imagine the abuse that could occur with an ill-intentioned doctor or even if they just make a mistake."
Medical experts say that continuing to treat a brain-dead person is irresponsible and unethical. Nurses and doctors are already in short supply, as is hospital bed space.
It comes down to money, too. Insurance companies won't pay for treatments to a brain-dead person, Hartman said, so hospitals have to eat those expenses.
"Hospitals don't send bills for care given after death," Hartman said.
Seeds of discord
Bottoms-Hawkins was injured by a homeless boy she had befriended as an outgrowth of a ministry she and her mother organized in 1999 to provide services for the poor and homeless.
The boy either pushed or threw her down while they were hanging out at a mutual friend's apartment.
Bottoms-Hawkins suffered severe head trauma. The boy later pleaded guilty to voluntary manslaughter and was sentenced to three years in prison.
Hawkins says she began to distrust DeKalb Medical Center doctors almost immediately after her daughter was hospitalized.
Her response is not uncommon, says John Banja, a medical ethicist with the John and Susan Wieland Center for Ethics at Emory University.
"Maybe they've had a bad communication experience, but oftentimes families are not in a very good psychological situation to objectively weigh what is going on with their loved one," Banja said. "Especially if they've already felt as though they were being dismissed and not being communicated with."
A similar problem arose in December between the family of a Florida man and Emory Eastside Medical Center in Gwinnett County.
Donald Fennell was visiting his daughter in Snellville after Thanksgiving when he suffered a massive stroke. Doctors at Emory Eastside declared him brain-dead, but Fennell's wife and other family members held out hope he would recover.
The Fennell family went to court to bar the hospital from taking him off a ventilator. Gwinnett County Superior Court Judge Tom Davis authorized the hospital to discontinue treatment Dec. 6 after traveling to Donald Fennell's bedside and hearing testimony from the hospital's chief medical officer.
Alicia Fennell still harbors resentment against the hospital.
She said doctors never clearly explained her husband's condition or showed her CAT scans until they were hauled into court.
People avoid discussing their end-of-life wishes until it's too late, says Beverly Tyler, executive director of Georgia Health Decisions.
The nonprofit organization educates Georgians about health care options and helps people prepare advanced directives.
"They always say it's important, but getting them to take action is really difficult until something dramatic happens in their own families," Tyler said.
Disputes between families and hospitals crop up because both sides think they know what's best.
An advanced directive clarifies the patient's wishes. It tells caregivers whether to withhold or maintain life-sustaining treatment if a person is terminally ill, in a coma or in a persistent vegetative state.
Tara Bottoms-Hawkins and Donald Fennell did not have advanced directives. Advanced directives probably wouldn't have affected doctors' decisions —- they considered the patients brain-dead —- but they might have given the families solace.
Advance directive: A legal form or statement made by an individual to express preferences about life-sustaining treatment in the event they become unable to make such decisions or communicate them in the future.
Brain death: Irreversible cessation of all functions of the entire brain, including the brain stem. The brain stem controls involuntary bodily functions such as breathing, blood pressure and heart rate. The other, far more common type of death as defined by Georgia law is cardiopulmonary death, in which a person's heart stops beating and the person stops breathing.
Coma: A state of profound unconsciousness (may be reversible).
Life support: Medical techniques and associated devices used to sustain the body's biological functions, such as a ventilator, intravenous fluids and medications to maintain blood pressure.
Persistent vegetative state: When brain stem functions are intact and involuntary bodily functions such as breathing are sustained, but the patient shows severe mental impairment and no awareness of self or environment.
Sources: "The Last Dance: Encountering Death and Dying," a best-selling textbook in the field of death studies, and Dr. Richard Cohen, chairman of the ethics committee for Wellstar Health System.