By now, most readers of this blog are probably familiar with the story of Jahi McMath, a 13-year-old girl who underwent surgery on December 9, 2013 at Oakland Children’s Hospital. During post-op recovery, she started bleeding. Eventually, she went into cardiac arrest. She was then put on a ventilator.
Two days later doctors made a determination that she was brain dead.
Between now and then, the family has been involved in legal battles to keep their daughter on the ventilator, and followed that with demands to be able to move her to a long-term care facility. As of yesterday, the family reports that their daughter has been transported to a long-term care facility that was willing to take her.
During this time, there has been a huge amount of angry, condescending commentary from bioethicists. Art Caplan, Division of Medical Ethics at NYU Langone Medical Center, has been the most prominent bioethics pundit and writer on the situation.
(Note: several articles combine commentaries on Jahi McMath’s situation and the Texas case of a family fighting to have life-sustaining technology removed from a young woman – she carries a fetus and Texas law mandates that life-support be maintained until the fetus can be delivered, even in the case of brain death of the mother. It’s received less attention and we’re not addressing the issues in the case, which fall outside of NDY’s policy range.)
Here is some of what is being said about Jahi McMath, her family, and brain death in general:
From an Editorial in the Oakland Tribune: “There is no recovery from brain death. Ever. It is a uniform standard for being legally dead in California and nearly every other state.”
From a CNN story: “In Caplan’s view, it doesn’t do any families any good if hospitals ask them about mechanically continuing biological function in a brain dead patient. He says doctors should be more transparent about the finality of brain death.
“It just creates the possibility of a terrible scenario like the one that’s unfolded (in Jahi’s case), where the parents don’t really understand and then start to resist any removal of machines because they just want to hope that the worst possible thing did not happen,” he said. “I don’t think it’s kind to not be clear when death happens.”
Art Caplan and David Magnus in Times Ideas: “Jahi and Marlese are not injured or comatose or vegetative. They are deceased. They have been pronounced dead by multiple physicians who have conducted standard tests and diagnostic procedures. When a person is dead there is no longer any possibility of ‘life support’ by any technology or machine. When a person is dead there is nowhere to transfer them to recover. When a person is dead, life support has to end since regardless of what parents, judges or legislators might want to believe, no physician can do anything to treat death.
When doctors say ‘brain dead’ instead of dead they confuse family members, the media, judges and the public. Calling someone brain dead makes it sound like they are almost dead, sort of dead, kind of dead but not really dead—which they are.”
Finally, in what he referred to in an email as a “screed,” Caplan cited the events and coverage involving the battles over Jahi McMath as one more example of growing ignorance about science in the American population.
I don’t really want to unfairly dump on Caplan here. There have been plenty of other bioethicists commenting in the media. And Thaddeus Pope has been covering developments regularly, sometimes with titles that refer to Jahi McMath as a “corpse.”
With all due respect, I’d like to suggest that almost every bioethicist weighing in on this story has added to the ignorance and confusion surrounding brain death.
There’s a lot the public should know in order for us all to have an informed and rational discussion about brain death and how to talk about it.
In 2012, I wrote an op-ed with NDY President and CEO Diane Coleman that was published in the Wall Street Journal.
We described one major problem with the statutes regulating brain death
What most people are unaware of is that, under the Uniform Determination of Death Act (UDDA), hospitals get to set their own standards and specific protocols to use in making that determination.
A study published in 2008 in the journal Neurology found widespread variation in protocols used in top neurology centers.
Imagine allowing individual housing contractors to decide what parts of the plumbing code they choose to implement. That’s what the UDDA has done with hospitals and determination of brain death—and it leads to the possibility that someone could be determined “brain dead” and eligible for organ procurement in Hospital A, and diagnosed as a severely injured person needing evaluation and treatment in Hospital B.
(FWIW, I know that Caplan has a copy of this op-ed and presumably read it.)
For those interested, the abstract of the 2008 Neurology study cited, “Variability of brain death determination guidelines in leading US neurologic institutions”, can be accessed here — http://www.neurology.org/content/70/4/284.abstract .
The article paraphrases a key part of the ironically named “Uniform” Determination of Death Act regarding who gets to set the standards for determining brain death:
“In accordance with the Uniform Determination of Death Act, guidelines for brain death determination are developed at an institutional level, potentially leading to variability of practice.”
To a layman like myself, it would seem that problems in “quality control” would be an inevitable result of this deference to individual institutions.
A lot of the rhetoric being spun conflates science and law. Editorials and bioethicists have both proclaimed that saying Jahi McMath is alive is absurd because legally she became a corpse in the eyes of the law the minute the determination of brain death was made.
I guess we’re not supposed to notice that this logic is circular. The law says that when a determination of death is made, the person is deceased in the state’s eyes. But the state lets individual hospitals set their own varying standards in regard to making those determinations, which means that no matter how sloppily, unprofessionally, or minimal the standards used to make the determination – a person becomes a corpse even if another facility would determine that the same person is alive.
Who would have thought that individual hospitals held – or deserved – such a high degree of autonomy?
There have also been repeated claims that there is “no recovery from brain death,” which evades the reality of those individuals who have been determined to be brain dead and “miraculously” recovered.
In 2008, there was the “miraculous” story of Zack Dunlap [http://www.notdeadyet.org/2008/03/brain-dead-man-comes-alive-miracle.html], who showed signs of movement shortly after being declared brain dead and being readied for organ harvesting. His recovery at the time was hailed as a miracle – and the hospital staff that made the declaration didn’t seem to inclined to argue. Here was my take at the time:
Me, I’m a little bothered by that particular leap of faith. Does this use of the word “miracle” simply give us permission to avoid asking bothersome questions about diagnostic procedures at the hospital – or maybe even about the “certainty” attached to the diagnosis of “brain death?”
Because calling it a “miracle” lets medical people off the hook. Calling it a “miracle” prevents us from asking if others who have been declared “brain dead” might have been like Zack Dunlap – only not as lucky as Zack, because they had no one looking to see if maybe they might be alive after all.
There have been others, too. A 2011 article by Carol Bengle Gilbert on Yahoo.com is one of the best mainstream articles I’ve read on the complexities surrounding brain death. She mentions Dunlap’s case – and 3 others from 2011, although not from the U.S.
Here is an excerpt from the article [ http://news.yahoo.com/brain-dead-doctors-said-yes-patients-proved-otherwise-221600587.html ] citing some research I was unfamiliar with:
Doctors are not consistent in declaring brain deaths. “Determining Brain Death,” published by the American Association of Critical-Care Nurses in 1999, cited a study demonstrating that only 35% of 165 doctors likely to have to assess brain death could accurately describe the legal standard. Only 42% were consistent in applying their concept of death.
I guess that those people who claim no one who was truly brain dead has ever recovered would say that Dunlap and others were misdiagnosed and don’t count. That evades the fact that any determination of brain death – misdiagnosis or not – means that the individual becomes a corpse in the eyes of the law. Zack Dunlap was a corpse until his “diagnosis” was revised. When making sanctimonious statements about what brain death means, we should remember that.
Another feature of the coverage of the Jahi McMath story has gone largely unmentioned. That may be understandable since most of the commentators have been white professional males. The vast majority of the articles, columns, blogs, etc. carry a picture of Ms. McMath – with or without her family – a young Black teenager. You’d think that might give white professionals pause for thought about the history, mistrust, discrimination, etc. between people of color in the U.S. and the field of medicine. It hasn’t.
So I want to share parts of “Jahi’s Family Reflects Deep Mistrust of End-of-Life Decisions” written by Janell Ross and published on The Root:
But where Moreno sees evidence that hospitals are doing a better job communicating with black patients and their families, University of Pennsylvania legal scholar and sociologist Dorothy Roberts does not.
Hospital officials have publicly referred to Jahi as a “dead body,” insisting that treating her would be unethical, Roberts said. Stories about Jahi’s situation have implied that the family’s position is connected to scientific ignorance, irrational combativeness and superstition.
The reality is that African Americans are aware of the often limited value of black life in America, Roberts said. In early America, the value of African-American life was typically defined by what sort of loss their death or injury would cause a slave owner, said Roberts, who studies race and bioethics.
Some of the country’s earliest human experiments were conducted on enslaved black women [http://newamericamedia.org/2010/12/dr-marion-sims-statue-where-should-it-stand.php].
Beginning in the 1930s, government-funded researchers withheld treatment from patients suffering from syphilis to study the disease’s effects. And until the 1970s, several states maintained programs that forced poor, disabled and African-American women to undergo sterilizations.
In 2002 the Institute of Medicine found that African-American patients — even when insurance status, income, age, and severity of conditions are comparable — are more likely to receive undesirable medical treatments, such as lower-limb amputations for diabetes.
According to this IOM study, minorities are less likely to receive even routine medical procedures, appropriate cardiac medications, lifesaving cardiac bypass treatment, dialysis, transplants, and other treatments than white patients with the same health challenges, insurance status, income and age [http://www.iom.edu/Reports/2002/Unequal-Treatment-Confronting-Racial-and-Ethnic-Disparities-in-Health-Care.aspx ]
[This really is an excellent article – and a sadly missing part of the discussion until now. Please go read it — http://www.theroot.com/articles/culture/2014/01/blacks_don_t_trust_end_of_life_decisions.2.html ]
Meanwhile, all that the leading bioethicists think is necessary for the public to know is that “brain death is death” and that once you’re brain dead you’re a corpse – because the law says so. Any of the messy debates, embarrassing misdiagnoses, professional conflicts, etc. are unnecessary for us to know, apparently. This seems less to me like education than preaching a gospel to large audience of potential converts whose souls you want to save.
To be fair, the American Academy of Neurology issued new guidelines regarding determination of brain death in 2010 [“New Guidelines for Determining Brain Death – But Will Hospitals Actually Follow Them?” http://www.notdeadyet.org/2010/06/new-guidelines-for-determining-brain.html ] in an apparent attempt to correct this confusion.
Somehow, the Academy believes this will reduce the alarming variability that was found among institutions in the 2008 study. The rest of us – we’re supposed to take the efficacy of the “fix” on – pardon the expression – “faith.”
[Comment: Really interesting points made in this article from a disability rights view. Brain death has been controversial for a long time in bioethics circles but these discussions rarely reach the public. (I wrote 2 articles about this years ago: “Death and the Organ Donor” online at www.wf-f.org/09-01-Valko.html and “Was Zach Dunlap’s Recovery a Miracle?” online at www.wf-f.org/08-2-Valko.html)
However in my opinion, the case of the “brain dead” mom in Texas also has a disturbing component involving disability: The expectant dad has been quoted as saying that he wants life support withdrawn despite the Texas law because he is worried about the health of his unborn baby because the baby may have been oxygen deprived during the effort to save the mom.
Ironically, most people are unaware that there are many prospective adoptive parents who would be happy to take any baby even if he or she had disabilities. I noticed this during the 1982 Baby Doe case involving a newborn with Down Syndrome whose parents decided to withhold a simple but life-saving surgery so that he could eat and drink. Many people including myself and my husband were willing to take the baby and have the surgery performed but the parents refused and Baby Doe dehydrated to death while lawyers were trying to get a court order to permit the surgery. I’ve also noted this outpouring of support from prospective adoptive parents happening since then whenever there is a publicized case in which abortion or withdrawal of treatment decisions by the parents are made because of potential or actual disabilities. Some groups like the Down Syndrome Association have even had waiting lists of potential adoptive parents.
In the end, I believe that discrimination is discrimination whatever the age or status of a human being.
By the way, I now have a daughter-in-law who desperately needs a kidney transplant but she has decided to only accept a living donor because of ethical concerns about brain death and Donation after Cardiac Death. N. Valko RN ]
[7 Jan 2014, Stephen Drake, http://www.notdeadyet.org/2014/01/lets-have-a-real-discussion-bioethicists-preach-fail-to-teach-on-brain-death.html ]