Tuesday, December 1, 2015

Brain death 3

Several doctors, many pre-eminent ethicists and a California judge all pronounced Jahi McMath “brain-dead” almost two years ago, and a county coroner issued her death certificate. But a document filed this month in the Superior Court of California claims a world-renowned pediatric neurologist has spent hours with the 15-year-old girl and determined that she “no longer fulfills standard brain-death criteria” because she responds to verbal commands.

If proven true, the case will be the first in which a person correctly declared “brain-dead” according to accepted diagnostic criteria was then shown to have improved to no longer meet the conditions of death — and is alive. As such, McMath’s case is potentially explosive in the medical, legal and ethical end-of-life arena, where a host of diagnoses, including “brain-death,” are increasingly untenable...

At the time of the tragedy, the family was criticized publicly for failing to accept Jahi’s death. New York University ethicist Arthur Caplan called the efforts to treat Jahi “ghoulish” and said doctors and facilities treating her should be “charged with desecrating a corpse.”

“She’s very frail,” Caplan told CNN. “Her body is falling apart. At least, this can’t go on much longer.”

A Facebook update, posted last month, shows Jahi a few days before her 15th birthday. “Thank you for your continued prayers. The Power of Prayer. The Grace of God,” it says under a picture of the girl wearing heart-shaped eye covers, lying beneath a wall plastered in cards and her name in pink glitter. Her ventilator tube, inserted in her throat, is not visible. “Our little sleeping beauty is doing great and progressing. She is moving more on her mother’s command. As you can see, she is still alive and just as beautiful as ever. Flawless skin!”

Jahi’s mother’s testimony is now supported by an internationally recognized specialist in neurology. UCLA pediatric neurologist Dr. Alan Shewmon confirmed to the Register it is his expert opinion, paraphrased in the malpractice complaint filed this month in California, stating, “I still stand by my amended court statement.”

The paper states: “In the opinion of the pediatric neurologist who has examined Jahi, having spent hours with her and reviewed numerous videotapes of her, that time has proven that Jahi has not followed the trajectory of imminent total body deterioration and collapse that was predicted back in December of 2013, based on the diagnosis of brain death.”

“Her brain is alive in the neuropathological sense, and it is not necrotic. At this time, Jahi does not fulfil California’s statutory definition of death, which requires the irreversible absence of all brain function, because she exhibits hypothalamic function and intermittent responsiveness to verbal command.”

The complaint also claims that Jahi began menstruating eight months following her diagnosis of brain death. “The female menstrual cycle involves hormonal interaction between the hypothalamus (part of the brain), the pituitary gland and the ovaries,” it states as the opinion of the examining physician. “Corpses do not menstruate. Neither do corpses undergo sexual maturation.”...

“Regardless of one’s views about brain death, if these developments are correct, then this is a bombshell,” commented Robert Truog, a pediatrician at Boston Children’s Hospital and Harvard Medical School. He is a leading proponent of doing away with the dead-donor rule to allow doctors to take organs from living people who are beneath an acceptable quality of life.

“Given the intensive scrutiny that this case received, I have to believe that she fulfilled all of the standard criteria for the diagnosis of brain death when she was initially diagnosed. In spite of all of the cases reported over the years in the media about patients who ‘recovered’ from brain death, I think we have always been able to say that there has never been a patient correctly diagnosed as being brain dead who has developed neurological functioning inconsistent with that diagnosis, and I think we have all found that reassuring. But this changes all that,” said Truog.

“Furthermore, unless her parents had pushed (to an unreasonable extent, in the minds of many) for continuation of life support, we would never have known that this potential existed,” added Truog. “Hence, it is not sufficient to say that this is a ‘one-off’ case that we can ignore, because we do not know how often this might occur if such support was more often provided.”

“It is obvious that, if the lawyer’s claims are true, Jahi is not now and never has been dead,” Robert Veatch, professor at the Kennedy Institute of Ethics at Georgetown University, told the Register. “This means the tests performed in California leading to the pronouncement of death must either be done erroneously or that the tests themselves, even if properly conducted, are in error.”

“It’s a big deal,” Pope told the Register, because the case could significantly undermine public trust in medical diagnoses — especially at a time when so many assumptions about brain conditions are being challenged. Researchers at the University of Western Ontario, Canada, have begun communicating with patients in so-called “vegetative states,” who were supposed for decades to be completely incapable of conscious thought, using functional MRI technology.

“Statistically, there are already increasing numbers of brain-death disputes, and that is largely a consequence of the Jahi McMath case,” he said.

Read more: http://www.ncregister.com/daily-news/top-neurologist-jahi-mcmath-is-no-longer-dead/#ixzz3t78vo1hB

10 comments:

  1. A Nevada father is in a legal battle with a hospital after doctors declared his 20-year-old daughter brain dead in May and tried to remove her from a ventilator.

    The situation is the latest in a series of tragic cases between parents of children declared brain dead and hospitals trying to remove life support in the past few years. In the new case, Aden Hailu, a student at the University of Nevada, had exploratory surgery in April after experiencing abdominal pain, according to the Telegraph Times. During the surgery, she suffered brain damage from a lack of oxygen and never woke up from the anesthesia, reports state.

    People reports that while doctors said her condition was “rapidly declining” in April, they also said she showed some eye response and arm movements. Early EEG tests showed that Hailu had some brain function; however, a later test showed that the signs of brain function no longer existed, the report states. On May 28, doctors labeled Hailu brain dead after determining that she could not breathe on her own without a ventilator, the report states.

    Her father, Fanuel Gebreyes, is suing Saint Mary’s Regional Center to keep his daughter on life support, reports state. The family reportedly understands that the young woman’s condition is not good, but they are hanging onto hope that she could recover.

    The Nevada Supreme Court recently heard the family’s case and ruled that a lower court judge erred in rejecting the family’s request to order the hospital to keep the young woman alive, according to People...

    Aden Hailu is on life support at Saint Mary’s Regional Medical Center while the question of whether she is legally brain dead is resolved. Gebreyes has refused, instead insisting she be given thyroid medication and a tracheostomy so she can receive nutrition through her throat, not just fluids through an IV.

    “Aden needs treatment, not tests of her brain,” he wrote in a November 20 letter to the hospital that he demanded be attached to her patient chart. Gebreyes declined to comment after the hearing. “The Nevada Supreme Court ruled… that Aden Hailu is alive.” His attorney said in a letter to the hospital that Gebreyes won’t allow brain tests until his daughter is given a tracheostomy, nutrition and thyroid medication. She remains alive with the assistance of a ventilator and feeding tube.

    http://www.lifenews.com/2015/12/07/father-sues-keep-his-daughter-alive-hospital-threatens-to-pull-the-plug-without-consent/

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  2. Regarding the prior entry, see comment of July 27, 2015, under Brain Death April 12, 2015.

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  3. (see Brain death 2 10/17/15 comment December 23, 2015 at 10:40 AM) At his San Francisco law firm on Wednesday, attorney Chris Dolan announced the suit claiming Jahi's civil rights have been violated by those who refuse to heed evidence that she is alive.

    The attorney said that over the past year he has filed suits and requests with California courts and state departments seeking to reverse the brain-death diagnosis and revoke Jahi's death certificate, which keeps her from coming home to California. But every agency said the same thing: You can't get relief here. So, he is headed to federal court.

    "The complaint is designed to restore Jahi McMath's life, to give her the most basic dignity and freedom to be called a human being and not a corpse," said Dolan, who has represented the family since December 2013.

    What has followed is a nearly two-year legal battle, with Dolan issuing multiple court filings seeking to have a judge hear testimony from the family's team of experts, who say Jahi shows signs of life. Such declarations challenge the findings by two doctors at Children's Hospital -- later renamed UCSF Benioff Children's Hospital Oakland -- that were reaffirmed by a respected and court-appointed Stanford neurologist, Paul Graham Fisher.

    As in previous news conferences, Dolan said videos of Jahi show she moves limbs when commanded by family members. In the latest lawsuit, a physician currently treating Jahi gave a statement saying she had witnessed Jahi move her fingers at the command of her mother, Nailah Winkfield, according to Dolan. Alan Shewmon, a respected neurologist from UCLA, has also reviewed hours of videotape of Jahi making similar movements when asked, Dolan said.

    Experts have previously told this newspaper it is not uncommon for brain-dead patients to have spontaneous reflexes and have asked to see prolonged videos of Jahi being told to move body parts. The family has not publicly released videos of that length.

    Sandra Chatman, Jahi's grandmother who lives in Oakland, said she recently returned from a three-week visit with Jahi.

    "I asked her to give a thumbs-up, and she does it. If I play music she wiggles (her fingers) to the rhythm," Chatman said...

    "Jahi is healthy from the neck down, she just has a brain injury, and I understand those things do take time to heal," Winkfield said. She said her life has changed since her daughter's surgery went wrong. "I did have a house and a job. I don't have a house anymore. I don't have a job anymore. I don't have my other children (with me) anymore. I don't have family holidays celebrated at home. I don't get to go out with my friends anymore. I don't get to see my daughter's smile anymore. I'm devastated."

    http://www.contracostatimes.com/breaking-news/ci_29305579/jahi-mcmath-family-sues-federal-court-get-brain

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  4. It's been two years since Jahi McMath's tonsil surgery went wrong, she suffered brain death, and was declared dead, and now her family wants that death certificate revoked for the now-15-year-old who remains on life support. Jahi's mom, Nailah Winkfield, is suing in federal court various entities that include the state of California to have her daughter declared legally alive, reports Courthouse News Service, saying she "wishes to have her daughter's basic human right, to life, restored to her so that she can return to California" from New Jersey, which is the only state that requires life support for patients such as Jahi.

    "I want her to have the same rights as any other disabled kid," says Winkfield, per the AP. Should Jahi leave New Jersey without such a declaration, per the suit, "she could be refused treatment, unplugged, even shot, without repercussion as she is legally dead in California." Winkfield says in her lawsuit that Jahi shows signs of life, including what she calls "uncontroverted and overwhelming" evidence of brain function and has begun to menstruate.

    http://www.newser.com/story/218096/jahi-mcmaths-family-wants-her-declared-alive.html

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  5. As Jahi McMath, declared brain-dead in 2013, remains hooked up to machines in New Jersey, her family is filing suit against the Oakland hospital where her surgery for sleep apnea went terribly wrong, the San Jose Mercury News reports. The suit against UCSF Benioff Children's Hospital Oakland and surgeon Frederick Rosen presents a disturbing account of the family's experience: Vast quantities of blood poured from the teen's mouth after her tonsillectomy and requests for a doctor were delayed before the hospital insisted McMath was dead and urged the family to donate her organs. Rosen, the suit alleges, didn't tell nurses that McMath had an abnormal throat artery that made surgery more dangerous.

    Within half an hour of the surgery, the girl was coughing up "buckets of blood," according to the Mercury News account of the suit. When she began to bleed, the filing holds, nurses said it was "normal," the San Francisco Chronicle reports. A nurse said the blood should be suctioned, but an hour into the process, another nurse said that was highly dangerous, the suit says. Hours after the family sought a doctor, one arrived, allegedly saying "(expletive), her heart stopped." Days later, tests showed no brain function. Hospital workers, the suit says, pushed the family to donate McMath's organs, even raising the matter while her mother was praying in a hospital chapel. "What is it you don't understand?" the hospital's pediatrics head allegedly said at one point. "She is dead, dead, dead, dead."

    http://www.newser.com/story/203519/jahi-mcmath-suit-tells-brutal-tale-of-surgery-gone-wrong.html

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  6. Lewis A, Varelas P, Greer D. Prolonging Support After Brain Death: When Families Ask for More. Neurocrit Care. 2015 Oct 21. [Epub ahead of print]

    Abstract


    BACKGROUND:

    The manner in which brain death protocols in the United States address family objection to death by neurologic criteria has not been explored.

    METHODS:

    Institutional brain death protocols from hospitals in the United States were reviewed to identify if and how the institution addressed situations in which families object to determination of brain death or discontinuation of organ support after brain death.

    RESULTS:

    Protocols from 331 institutions in 25 different states and the District of Columbia were reviewed. There was no mention of how to handle a family's objections in 77.9 % (258) of the protocols. Of those that allowed for accommodation, reasons to defer brain death declaration or prolong organ support after brain death declaration included: (1) religion; (2) moral objection; (3) nonspecific social reasons; or (4) awaiting arrival of family. Recommendations to handle these situations included: (1) seek counsel; (2) maintain organ support until cardiac cessation; (3) extubate against the family's wishes; (4) obtain a second opinion; or (5) transfer care of the patient to another practitioner or facility. Protocols differed on indications and length of time to continue organ support, code status while support was continued, and time of death.

    CONCLUSIONS:

    The majority of protocols reviewed did not mention how to handle circumstances in which families object to determination of brain death or discontinuation of organ support after brain death. The creation of guidelines on management of these complex situations may be helpful to prevent distress to families and hospital staff.

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  7. Smith ML, Flamm AL. Accommodating religious beliefs in the ICU: a narrative account of a disputed death. Narrat Inq Bioeth. 2011 Spring;1(1):55-64.

    Abstract


    Despite widespread acceptance in the United States of neurological criteria to determine death, clinicians encounter families who object, often on religious grounds, to the categorization of their loved ones as "brain dead." The concept of "reasonable accommodation" of objections to brain death, promulgated in both state statutes and the bioethics literature, suggests the possibility of compromise between the family's deeply held beliefs and the legal, professional and moral values otherwise directing clinicians to withdraw medical interventions. Relying on narrative to convey the experience of a family and clinical caregivers embroiled in this complex dilemma, the case analyzed here explores the practical challenges and moral ambiguities presented by the concept of reasonable accommodation. Clarifying the term's meaning and boundaries, and identifying guidelines for its clinical implementation, could help to reduce uncertainty for both health care professionals and families and, thereby, the incremental moral distress such uncertainty creates.

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  8. To borrow from bioethicist Wesley J. Smith writing in November, her family had been given the opportunity to file an amended complaint in their medical malpractice action against Oakland Children’s Hospital and one of its physicians “showing that Jahi is alive, with the assurance that if properly pleaded, evidence of life could be brought. She seems to have done just that.”

    While I do not know the subsequent ins and the outs, we learn in a recent story in the San Francisco Chronicle that “The family of Oakland teen Jahi McMath has filed a federal lawsuit to get her death certificate revoked after an unsuccessful attempt to do so at the state level, attorneys for the family said.”

    Reporter Jenna Lyons explains:

    In the suit, Jahi’s current physician claims the 15-year-old has shown brain activity several times in her presence in the past few months.

    At a news conference at the law offices of Christopher Dolan in San Francisco, Jahi’s mother, Nailah Winkfield, addressed the media in an online video from New Jersey, insisting her daughter is alive.

    “There’s no way in the world I’d be holding onto a dead person,” she said. “I want her to have the same rights any other disabled child has. I definitely believe that God will heal her. I’ll pull a trigger on myself before I pull a plug on her.”

    Jahi’s grandmother, Sandra Chatman, said she had visited Jahi and that she was progressing.

    “I ask her to give me a thumbs-up, and she does it,” Chatman said, speaking from Dolan’s law office. “She’s just doing awesome. I couldn’t be more proud of Jahi.”...

    However it is not Jahi’s family alone that believes she is not brain-dead. “Declarations from respected physicians have concluded she exhibits neurological functions that are inconsistent with a deceased person,” Wesley wrote.

    Lyons reports that Jahi’s current doctor, Dr. Alieta Eck, has made a declaration in the suit that she believes the teen is alive. This after caring for her for months.

    “While Jahi McMath has suffered a serious, and significant brain injury, and exhibits the presentation of one who has suffered serious brain trauma, and exhibits signs and characteristics of serious brain damage, Jahi McMath is not dead,” Eck stated. “She exhibits signs of brain function.”

    http://www.nationalrighttolifenews.org/news/2016/01/jahi-mcmaths-family-files-federal-suit-to-have-her-death-certificate-revoked/

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  9. (see 12/7/15 4:36 pm above)A young woman declared brain dead at a Nevada hospital in May died Monday while on life support.

    The Associated Press reports that Aden Hailu, the 20-year-old college student at the center of a legal battle after the hospital attempted to remove her from a ventilator, died about 4:30 p.m. Monday at Saint Mary’s Regional Medical Center in Reno, Nevada.

    David O’Mara, an attorney for the family, told the AP that the young woman died of respiratory failure.

    The University of Nevada student had exploratory surgery in April after she began experiencing abdominal pain, LifeNews previously reported. During the surgery, she suffered brain damage from a lack of oxygen and never woke up from the anesthesia, reports state.

    Her father, Fanuel Gebreyes, sued the hospital after it declared Hailu brain dead in May and tried to take her off a ventilator. Gebreyes fought the case all the way to the Nevada Supreme Court, which ruled that the hospital had been too hasty in its decision about Hailu.

    People reports that while doctors said Hailu’s condition was “rapidly declining” in April, they also said she showed some eye response and arm movements. Early EEG tests showed that Hailu had some brain function; however, a later test showed that the signs of brain function no longer existed, the report states. On May 28, doctors labeled Hailu brain dead after determining that she could not breathe on her own without a ventilator, the report states.

    In tragic cases like Hailu’s, families often fight for their children’s chance to recover, no matter how slim the chance or expensive the treatment. There are cases where individuals have lived and recovered because their families refused to give up on them; however, many cases do end in the child’s death.

    In November, LifeNews reported a similarly tragic story of a 7-year-old from New York City who doctors also declared brain dead after a choking accident. Her family fought to keep the young girl on life support, but she died several days later.

    http://www.lifenews.com/2016/01/05/woman-dies-after-hospital-declared-her-brian-dead-and-threatened-to-pull-the-plug-without-consent/

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  10. The mother of the California girl who has been cared for in New Jersey after being declared brain dead more than two years ago has filed a federal lawsuit to get her daughter's death certificate declared void.

    Nailah Winkfield, the mother of Jahi McMath, filed a civil rights complaint in California's Northern District last month, arguing that McMath has some brain activity, which would contradict a "brain death" diagnosis.

    Winkfield wants to move back to her home in Oakland, Calif., but fears that with the state recognizing the death certificate, McMath would not be able to receive ongoing medical care there...

    Citing their Christian faith, the family fought to keep McMath from being disconnected from life-sustaining equipment, the lawsuit says. They moved her to New Jersey in 2014 because the state has a religious exemption for those who object to terminating medical support based on a brain death diagnosis.

    According to the suit, McMath can move a finger on her mother's command. It also says that since she came to New Jersey, McMath, now 15, began to get her menstrual period and her breasts developed.

    The maturation of her body, the suit said, could only have happened with a functioning hypothalamus, the portion of the brain that regulates the release of hormones.

    Aside from her brain injury, McMath "is in excellent health with no skin or organ breakdown," the lawsuit said. She receives "minimal in-home support."

    Dr. Alieta Eck, McMath's primary care physician from Franklin Township and a former candidate for Congress, was among five medical professionals to sign affidavits saying McMath did not meet the threshold for brain death, the lawsuit says.

    With the affidavits in hand, the family last year began asking officials in Alameda County, where McMath lived, to change the death certificate that had been issued on Dec. 12, 2013.

    Beginning in May, the lawsuit says the family tried to get a number of county officials to address their issues until Oct. 9, when a lawyer for Alameda County said they had no basis to change or nullify the death certificate.

    The suit says McMath's civil rights were violated, including her right to due process, the right to exercise her religion and her right to privacy. The suit also says officials violated the federal Rehabilitation Act and the Americans With Disabilities Act.

    http://www.nj.com/somerset/index.ssf/2016/01/family_of_brain_dead_girl_sue_to_change_death_cert.html

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