Annelise Camp was found unconscious in a swimming pool in Texas on Memorial Day. She was only 2 years old, and it wasn’t clear how long she had been underwater.
Paramedics performed CPR to try to revive her. And finally, a faint heartbeat returned, but not enough to stimulate a pulse in her wrist. She was put on a ventilator at a Houston-area hospital, and doctors overseeing her care thought she was brain-dead.
But her family believed she could recover, and the Camps’ resistance to a test to confirm the brain death diagnosis reflects the newest front in a continuing legal and moral struggle over when life ends. Under Texas law, and in most states, hospitals can withdraw life-sustaining measures such as feeding tubes and ventilators after a patient is declared brain-dead, which is defined both in law and by the medical establishment as the irreversible cessation of brain function.
But to do that, they must first conduct a test for brain death, a status that itself is contentious. Right-to-life activists argue that a person is living so long as his or her heart beats — even if he or she is dependent on a ventilator for oxygen. The idea of brain death also conflicts with the religious beliefs of some that hold that a soul remains as long as the heart can pump blood, even if the person is on a respirator.
The opposition to a test, which many doctors say prevents them from conducting what they consider a noninvasive diagnostic procedure, has complicated what many once thought was more clear cut.
“You’d think what is life and what is death is scientific,” said Thaddeus Pope, who directs the Health Law Institute at Mitchell Hamline School of Law in St. Paul, Minn.
Questions about when a patient can be taken off life support have garnered widespread debate since technology emerged in the 1960s to sustain people’s bodily functions after they have lost consciousness.
The Camp case represents a new battleground, though. Instead of trying to block life support from being removed, the Camps are part of a wave of families pre-empting that by suing to stop physicians from even conducting a brain death test. They argue that the diagnosis is inconsistent with certain religious beliefs, though the procedure is considered standard medical practice.
“Every major children’s hospital in the country has had cases like this,” Dr. Robert D. Truog, a Harvard University bioethicist, said. “Most of these families are understandably in a state of denial.” Dr. Truog emphasized that no patient who has tested brain-dead has ever regained consciousness.
After the Camps sued Texas Children’s Hospital to block it from performing a brain death test, they found another hospital willing to treat her, Ochsner Children’s Hospital in Louisiana, and last month transferred her there.
That hospital did not return requests for comment, and it was not clear whether doctors there will perform a brain death test.
Heath Novosad, a lawyer for the Camp family, declined to speak about the case, saying he was bound by a court order. The family did not return requests for comment, and Mr. Novosad said the Camps were also prohibited from discussing the case.
In a statement provided by its lawyer after the transfer, Texas Children’s Hospital said it had reached out to more than 40 hospitals to try to transfer Annelise before Ochsner agreed to take her.
“This is a tragic and heartbreaking situation,” the hospital said, adding that it had exhausted all medically viable options.
Court challenges like the Camp family’s date back to at least 2016, when parents of a 2-year-old in Virginia sought to block a hospital from performing a brain death test after the child choked on a piece of popcorn. Part of the brain death exam involves an apnea test, in which a person is temporarily taken off mechanical ventilation that pumps air into lungs to see if the body is actively taking in a breath on its own. If the person makes no effort to breathe, he or she is considered brain-dead. In the Virginia case, the family said the test would lead to a dangerous buildup of carbon dioxide, but the court ruled against the family, and the child died before the Virginia Supreme Court could consider the appeal.
That challenge, like the Camp case, raised the question of whether physicians must obtain consent before evaluating a patient for brain death. According to guidelines from the American Academy of Neurology, there is no obligation to obtain consent because doctors have a professional obligation to report death accurately.
David Magnus, a Stanford University professor of medicine and biomedical ethics, said it was important for doctors who care for critically ill patients to be able to perform tests without consent. Otherwise, he said, “you’d have to get consent every hour.”
Mr. Pope, the law professor, said the number of challenges to brain death examinations has increased, though most do not unfold so publicly. The Camp family’s case drew the attention of anti-abortion organizations and politicians, who believe in the sanctity of life and have sought to rally more support.
Ken Paxton, the Republican attorney general of Texas and a candidate for Senate, wrote on social media last month before the transfer that he was “closely monitoring this case and will act to protect this child.” Liz Murrill, the Republican attorney general of Louisiana, said she visited Annelise after she was transferred to Ochsner and prayed over her with her family.
The idea of brain death has also become more disputed recently in part because of recent news coverage, including in The New York Times, about patients’ showing signs of life while their organs were being removed for transfer. Historically, most donated organs have come from people who are brain-dead and are temporarily kept on machines only to maintain their organs, though such organs don’t remain viable indefinitely.
Those types of stories, Mr. Pope said, have “sowed the seeds of distrust” in the medical system.
“There’s also a faith element to it,” he continued. Some people do not accept brain death as a concept while others believe in divine intervention. Mr. Pope added that people who are brain-dead do not necessarily appear deceased, since their bodies are still warm and their heart is still beating with the help of a ventilator. That can make it even harder for families to accept the diagnosis.
Texas Right to Life, a Christian organization that opposes abortion, worked with the Camp family to find Ochsner Children’s Hospital. John Seago, the president of the organization, said the convictions behind his stance on abortion also led him to reject that brain death is death.
Mr. Seago pointed to the state of New Jersey as a model for other states because of its law allowing for a religious exemption. There, health care providers cannot declare a person dead based on neurological criteria if they have reason to believe it would violate the patient’s religious beliefs.
“Annelise is being seen as less than other patients because she doesn’t have consciousness,” Mr. Seago said. “That is the same kind of discriminatory worldview we oppose in other situations.”
The concept of brain death was introduced in the late 1960s as advancements in resuscitation and ventilators posed new ethical predicaments. At the time, the field of organ transplantation was just beginning. In 1968, a Harvard committee published a report defining brain death. That document provided the foundation for the 1981 Uniform Determination of Death Act, a template for a law that could be adopted by states. It was developed by legal and medical groups and defined the end of life clinically as the irreversible cessation of circulatory, respiratory or brain function. Most states adopted that law over the next few years.
Since that template was created, though, some questions have persisted. For example, most states do not specify in their guidelines whether physicians must obtain consent before performing a brain death test, leaving open the possibility for challenges like the one the Camp family lodged.
Some states, including New York and California, require reasonable accommodations for religious and moral objections. That can mean allowing relatives time to look into transferring the patient, or allowing them time to gather to perform specific religious practices.
In 2023, the Uniform Law Commission paused its efforts to revise the Uniform Determination of Death Act because medical organizations and patient advocacy groups were too divided. Mr. Pope, who was on the committee charged with drafting the revision, said the change was supposed to address whether doctors needed to obtain consent before doing the brain death test, and whether the law should permit religious exemptions.
“The whole point was to create uniformity,” he said. “But they realized we are not going to get uniformity because there is no consensus.”
Kitty Bennett and Sheelagh McNeill contributed research.
The post A 2-Year-Old’s Drowning and a Fight Over the Line Between Life and Death appeared first on New York Times.
