Aviv.What Does It Mean to Die.2018

Jahi McMath Case: A Story of Brain Death, Belief, and Legal Battles

The Initial Surgery and Complications

Thirteen-year-old Jahi McMath underwent a tonsillectomy to address sleep apnea, which caused fatigue and social embarrassment due to loud snoring.
Jahi's mother, Nailah Winkfield, encouraged her to ask questions to the doctor, Frederick Rosen, before the surgery.
Post-surgery, Jahi experienced significant bleeding, with nurses noting the blood but not intervening immediately.
Nailah expressed concern that Jahi's treatment was affected by racial bias.
Sandra Chatman, Jahi's grandmother and a nurse, also voiced concerns about the lack of appropriate medical attention.
Oxygen saturation levels dropped drastically and Jahi went into cardiac arrest, requiring two and a half hours to stabilize her.

Declaration of Brain Death

Two days after the initial complications, Jahi was declared brain-dead based on the Uniform Determination of Death Act, following tests that showed no brain activity.
California law allows a brief period for family accommodation before ventilator disconnection.
The family requested an apology from the medical staff, but they were not satisfied with the response.
Nailah couldn’t accept Jahi’s death due to her warm skin and occasional movements, which doctors explained as spinal reflexes (Lazarus sign).
A critical-care doctor suggested that the family should consider the impact on Jahi's appearance for the funeral, which Sandra found offensive and distrustful.

Legal and Ethical Conflicts

The family sought legal intervention to prevent the hospital from removing Jahi from the ventilator.
Lawyer Christopher Dolan took the case pro bono, arguing that disconnecting the ventilator would violate Jahi’s civil rights.
Dolan requested an independent medical examination, citing a conflict of interest for the hospital due to potential malpractice liability.
California law caps damages for pain and suffering in wrongful death cases at $250,000, but there is no limit if the patient is alive.
Dolan argued that disconnecting the ventilator infringed on Nailah's religious beliefs as a Christian, who believed her daughter's soul inhabited her body as long as her heart beat.
Hospital officials denied requests to keep Jahi on the ventilator until Christmas or to provide a feeding tube, calling it an "absurd notion".

Public Response and Court Rulings

Church leaders and community members protested the hospital's decision and called for an investigation.
A judge appointed an independent expert, Paul Fisher, who confirmed the brain-death diagnosis.
The family set up a GoFundMe page and received over $50,000 in donations to move Jahi to another hospital.
The Terri Schiavo Life & Hope Network offered assistance in finding a facility.
The hospital's ethics committee deemed further intervention inappropriate and expressed concerns about moral distress among the medical staff.
A court agreement allowed Jahi to be released to the Alameda County coroner, who issued a death certificate with "Pending investigation" as the cause of death.

Relocation to New Jersey

Jahi was moved to St. Peter’s University Hospital in New Brunswick, New Jersey, a state where families can reject brain death based on religious beliefs.
New Jersey law was originally written to accommodate Orthodox Jews, some of whom believe breath signifies life.
Children’s Hospital hired a crisis communications expert to manage media relations, accusing Dolan of creating a hoax.
Bioethicists criticized the family’s decision, with some calling it a desecration of a body.
Robert Truog from Harvard Medical School noted the social context of the family’s decision, highlighting the fears of neglect among African-Americans in medical care.
African-Americans are twice as likely as whites to request life prolongation in cases of irreversible coma.

The History and Ethics of Brain Death

Before the 1960s, cardio-respiratory failure was the only recognized form of death.
The concept of brain death emerged with the advent of modern ventilators.
In 1967, Henry Beecher at Harvard Medical School formed a committee to define brain death.
The committee's report, published in JAMA, cited the Pope and aimed to relieve burdens on families and hospitals and to facilitate organ transplantation.
By the 1970s, most states adopted the Harvard committee’s conclusions, allowing for more organ transplants.
Peter Singer described brain death as an ethically desirable but scientifically shaky concept.
In 1981, the President’s Commission for the Study of Ethical Problems proposed a uniform definition, stating that death occurs when the body stops operating as an "integrated whole."
Daniel Wikler, the commission’s staff philosopher, admitted to fudging the report, acknowledging that the theory wasn't supported by scientific facts.

Treatment in New Jersey and Stabilizing Condition

Upon arrival in New Jersey, Jahi received a tracheal tube and a feeding tube at St. Peter's Hospital.
Nailah faced ostracism but formed friendships with some nurses.
Jahi's condition stabilized, with improved skin elasticity and blood pressure.
Medicaid covered the care, costing approximately $150,000 per week.
New Jersey's 1991 statute prevents insurance denial due to religious beliefs about neurological criteria for death.
Alan Weisbard, who drafted the law, advocated for humility rather than certainty in defining death, citing diverse cultural and religious views.
Nailah recalled Jahi expressing her wish to be kept on a ventilator if something happened to her.

Signs of Responsiveness and Neurological Assessments

Music therapy seemed to lower Jahi’s heart rate.
Nailah recorded videos showing Jahi making movements in response to commands.
In one video, Jahi cocks her right wrist upon the command to move her hand.
In another video, Jahi moves her toes and foot upon the command to kick her foot after a delay of a few seconds.
Seven months after moving to New Jersey, Jahi began menstruating, which doctors couldn't definitively explain.

Life in New Jersey and Scrutiny

Jahi was discharged from St. Peter’s with a diagnosis of brain death and moved to an apartment rented by her family.
Nurses provided 24-hour care, and a devoted nurse encouraged interaction with Jahi, believing she could hear.
Police investigated an anonymous tip about a dead body in the apartment.
Nailah faced accusations of child abuse and exploiting her daughter for money.
Nailah turned to the Bible for solace and questioned God's plan.
MRI scans, supported by the International Brain Research Foundation, were conducted at Rutgers New Jersey Medical School and analyzed by Calixto Machado.
Machado observed that while Jahi’s brain stem was severely damaged, large areas of her cerebrum were structurally intact.
Machado noted heart-rate changes in response to her mother’s voice.

Conflicting Medical Opinions and Legal Battles Contine

Dolan requested the Alameda County Coroner’s Bureau to rescind Jahi’s death certificate, but it was rejected.
Alan Shewmon, a neurologist, suggested Jahi might have ischemic penumbra, potentially allowing for some recovery.
Shewmon analyzed videos of Jahi and concluded she was in a minimally conscious state.
Shewmon analyzed forty-nine videos containing a hundred and ninety-three commands and six hundred and sixty-eight movements. He wrote that the movements occur “sooner after command than would be expected on the basis of random occurrence,” and that “there is a very strong correspondence between the body part requested and the next body part that moves.This cannot be reasonably explained by chance."
In one video, Jahi seemed to display a complex level of linguistic comprehension.
James Bernat, a neurologist, expressed respect for Shewmon’s assessment but remained skeptical of the videos.

Alan Shewmon's Perspective on Brain Death

Shewmon, once a believer in brain death, began to question the concept after encountering cases of long-term survival post-diagnosis.
Shewmon found evidence of cases where people lived for months or years after being declared brain dead.
In 1997, Shewmon disavowed his earlier views.
Shewmon’s research influenced a new President’s council on bioethics in 2008.

Financial and Personal Struggles

The I.R.S. rejected Nailah's tax return because she listed a deceased person as a dependent.
Nailah sold her house to pay for rent in New Jersey and was diagnosed with depression.

Malpractice Lawsuit

Nailah filed a malpractice lawsuit against Oakland Children’s Hospital, seeking damages for Jahi’s pain and suffering.
The hospital argued that deceased bodies cannot sue and that further interventions were futile.
Expert medical opinions clashed, with some emphasizing standard brain-death criteria and others highlighting Jahi’s responsiveness and neurological activity.
A judge ruled that a triable issue existed as to whether Jahi met the statutory definition of dead.

The Jahi McMath Shadow Effect and Organ Donation Concerns

Jahi’s case led to an increase in families seeking legal means to prevent hospitals from disconnecting ventilators, called the “Jahi McMath shadow effect”.
Concerns arose that such disputes could reduce organ donation rates.
Truog emphasized the need for honesty and truthfulness in discussing brain death to maintain public trust.

Family's Perspective

The family is not sure that they would keep her on a ventilator if she still fulfilled the expectations for brain death.
Sandra said that before Jahi was given the MRI scans at Rutgers, she told herself, “If her brain is jelly, we are going to have to accept that. I don’t think people should live on that way. If they’re gone, they’re gone.”
Nailah seeks Jahi’s consent and monitors her for signs of wanting to continue living.
Jahi's younger sister, Jordyn, was similarly devoted. Jordyn has learned that if she wants to have a conversation in her sister’s room she needs to stand on the same side of the bed as her mother. “Jahi doesn’t like when two people talk over her,” Nailah said. “Her heart rate shoots up.”
Nailah said, “Jahi, one day, I want to know everything you know and everywhere that you’ve been.’ ”

Conclusion

The Jahi McMath case underscores the complexities and controversies surrounding the definition of death, particularly in the context of religious beliefs, medical ethics, and legal considerations.