Proposed bill would end government role in determining brain death

Doctors would have more say in determining brain death, rather than having to adhere to state regulations requiring a series of outdated tests, under a bill advancing in the state Legislature.

Physicians and state officials agree that the mandated tests are not keeping up with technology. The bill would give doctors leeway to apply more up-to-date methods for determining brain death.

A few critics, however, expressed concern about patient rights, wondering if doctors might, for example, be pressured to declare brain death too hastily in order to facilitate organ transplants.

An Assembly committee recently approved the change, which would affect some of the most sensitive and difficult moments that a patient’s family can experience..

The bill, A-3586, would prohibit the use of a specific criteria, test or procedure to determine “death by neurological criteria,” also known as brain death. Instead, doctors would use their best medical judgment, in accordance with current medical standards.

Defining the line between life and death has long been controversial in New Jersey, which uniquely allows an exemption from declarations of brain death for patients based on religious belief.

Groups representing neurologists, neurosurgeons and other specialists who determine brain death are promoting the change. They say that tests currently required by the state are out of step with medical standards. In addition, any new standards that are written into law could soon become obsolete, according to supporters of the change.

These possible new standards include a multipart test of reflexes, including whether a patient’s pupils respond to light, that must be repeated after six hours. Current medical standards don’t require that tests must be repeated, which can reduce the time it takes for a doctor to declare brain death.

However, a legislator and an activist raised questions about whether the change would be in the best interests of patients with minimal brain activity.

Currently, the state Department of Health and Board of Medical Examiners regulate the standards for determining brain death. The board has voted on a measure saying that it doesn’t see the need to keep its regulatory authority.

Dr. John J. Halperin, a neurologist, said medical science on brain-death standards is evolving. The medical director of neurosciences of Atlantic Health System, he said he has 30 years of experience dealing with both the technical aspects and the human tragedy surrounding declarations of brain death.

“It’s something very near and dear to my heart,” said Halperin, who also is a professor at Mount Sinai School of Medicine.

“The fundamental challenge we face has to do with the differences between medical science and the legislative process,” Halperin said.

Halperin said trying to reconcile state law with medical standards can lead to “confusion, delay and consternation” for families.

“Although medical science can help us update what we as a profession do, getting those changes through things that are carved in not quite stone but close in law, is a much more challenging and time consuming process,” Halperin said. “So that today, if I were called to see a patient with brain death, I would have to decide if I want to abide by the national professional standards of the American Academy (of Neurology) or do I want to go by New Jersey law.”

Halperin said it would greatly simplify the decision if doctors “could do what we do with everything else in medicine,” using evolving medical standards rather than an outdated legal definition.

The proposal to change the law was put forward by doctors’ groups to state officials reviewing whether state laws are up-to-date. State legal research found that changes in technology have resulted in regulations lagging behind medical standards, according to Marna L. Brown, counsel for the New Jersey Law Revision Commission. She said the commission supports the bill’s intent.

In addition, state officials could not find any other state that sets legal criteria for determining brain death, Brown said.

Brown also informed legislators of the position of the State Board of Medical Examiners that “any established criteria must include adequate and sufficient safeguards to ensure that a declaration of brain death could not be made on a patient who is not in fact brain-dead.”

Christina Strong, counsel for the New Jersey Neurosurgical Society, said the legal standards are wrong.

“It’s possible to be deceased in New Jersey, in a hospital, and not be legally deceased,” she said, describing the viewpoint of doctors: “I have to jump through hoops while the family is waiting for closure, I have to do medically unnecessary testing.”

She said an earlier effort to change standards, beginning in 2004, took three years. Strong said the change isn’t a “lowering of the clinical standards, it’s instead making them appropriate, so that doctors can follow the latest in accepted standards.”

Strong said that as a result of federal requirements governing organ donations, New Jersey hospitals now struggle to reconcile “legal diagnostic language, which doesn’t really exist, and clinical diagnostic language, which really does.”

Assemblyman Herb Conaway Jr. (D-Burlington), the bill’s sponsor and a doctor, said state government “should not be in the business of practicing medicine. Medical care should be driven by medical science and medical standards.”

Conaway said lawsuits could change medical standards, “but the government can’t properly keep up, nor should it.”

Assemblyman Erik Peterson (R-Hunterdon, Somerset and Warren) was the only member of the Assembly Health and Senior Services Committee to vote against the bill.

Peterson expressed concern that the doctors were seeking to declare patients dead more quickly.

“If they’re saying we’re making people wait unnecessarily to have their loved one declared brain dead, I’m just curious about how long we’re talking this difference would be,” he said.

Strong said doctors are seeking clarity and closure for patients’ families, noting that a doctor who conducts the second round of tests a few minute earlier than required by current regulations may result in another doctor having to start the entire six-hour testing process over again.

John Tomicki, executive director of the League of American Families, expressed concern about the future direction in determining brain death, saying that he has seen standards change, “sometimes unfavorably, because there is no patient advocacy.”

Tomicki said some patients declared brain dead later had “some degree of recovery.”

“There should also be somebody who is an advocate for the patient,” Tomicki said, adding that the state “should always err on the side of life.”

He later said doctors might feel pressure to declare brain death to aid with organ donation.

“We’re fighting to see that people are not declared dead before they are in fact dead,” he said.