Let’s Have a REAL Discussion: Bioethicists Preach, Fail to Teach on Brain Death

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 study cited can be accessed here.  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, 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 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. 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 are more likely to receive undesirable medical treatments, such as lower-limb amputations, and less likely to receive lifesaving cardiac bypass treatment, dialysis and other treatments than white patients with the same health challenges, insurance status, income and age.

(This really is an excellent article – and a sadly missing part of the discussion until now. Please go read it.)

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.  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.”

12 thoughts on “Let’s Have a REAL Discussion: Bioethicists Preach, Fail to Teach on Brain Death

  1. I have not reviewed guidelines on brain death from any society or particular group of physicians or practitioners. Regretfully, once there is a yes at one gate, the rest “administratively” follows and reifies what is probably wrong in the first place. A brief discussion is in my book, Personnel preparation in disability and community life (Racino, 2000) on assisted suicide because the disability fields need to come in when indeed it is abstractly known that “severely disabled” persons would be killed as opposed to given a choice of “assisted suicide”. Major point is that is against the Hippocratic oath of 1,000 years for a physician to begin that way.

  2. I agree that the sanctimonious and condescending attitudes of the doctors, and other so-called professionals, has done nothing to help this family heal at all. They have done exactly the opposite. And let’s remember, that this girl was allowed to bleed out, as her mother cried out for help, and was ignored by the staff. They need to get off their high horses because they have a major lawsuit coming for their medical negligence. My sister, who was two at the time, almost bled to death after a tonsillectomy, because her doctor had forgotten to give her a vitamin K shot to clot her blood. (This was in the early 60s.) The doctor felt so bad, that he sat by her bedside constantly, and pulled out the blood-clots to keep her from choking. She is fine now. I know that something similar happened to Jahi. I am praying for this family. Thank you so much for writing about this important issue.

  3. Thank you, Stephen Drake, for these reasoned and excellent comments! I agree with your assessment that the bioethicists have not educated the public about this particular case of a young teenager who is dead –been declared dead by the coroner of the County —yet is still breathing because she is on a ventilator and has NOT “expired” —which is the legal definition of a “corpse” isn’t it? (I feel sure that Prof. Pope wouldn’t have been so insensitive if he thought that the Mother would see his comments and was just emphasizing that in a legal sense, the state and the hospital had legally declared JaHai McNath to be a corpse.

    Wasn’t there some talk about an autopsy, as wanted by the coroner to determine the cause of death?. Doesn’t an autopsy then render a body to be “cadaver” who can be cut open to find the cause of death or be used by medical professionals to gain knowledge and to teach medical students. And, as you indicate, the organ transplant programs depend upon keeping patients (who agree to donate their organs) alive on ventilators to harvest organs from patients etc.. and that there are conflicts of interests etc… that can lead to abuse when life vs. death is debated.

    Looks like the LAW needs to catch up with the reality of “life and death” and “medical futility” and “medical necessity” and the higher courts will not be able to stay out of this debate and will have to clarify the right to live and the right to die for the people. .

    Obviously, the hospital and others have been very insensitive to the feelings of this Mother and the others who love this little girl. I am happy that the court has given this family some relief so that they can come to terms with whatever the outcome will be in the care center and that their faith in God will then comfort them if and when they let her go.

    From my perspective, I wonder if ALL the noise that this case has generated about “medical futility” and death with the American public and the media and the physicians/hospitals and the insurance companies to include Medicare will result in clarification of the current laws, Hopefully, such a clarification will support the autonomy of the individual patient, no matter age and co-morbidities, to determine when and if the patient wants to hasten death and terminate his/her life based on an honest diagnosis and prognosis by physicians/hospitals OR wants to continue to fight death by all of the technological procedures available under the law. .

    Won’t the envisioned IPAB of the ACA depend upon the laws already on the books and new laws clarifying the right to die and the right to live to be successful? . .

    I, of course, feel that the bioethicists have failed the general public completely about the subject of “medical futility” and “fiscal futility” and patients’ rights under the law —-especially about rights under Medicare/Medicaid law. As I have indicated, I have no doubt that there is an epidemic of unilateral covert and overt (default) DNR code status being extrapolated into the charts of the elderly/disabled on Medicare for the purpose of hastening death to CAP the costs of life-extending treatments that the hospitals KNOW will not be reimbursed.

  4. I have read through Thaddeus Pope’s comments about Jahi McMath, and a couple of other “futility” cases, and, frankly, the man just creeps me out. I commented on his blog, but he doesn’t have the guts to publish anyone who disagrees with his sick views.

    1. I’d wait a bit to see if there’s been a delay due to moderation. Pope’s been pretty good about letting criticism through in the past – including some from me. He might be moderating posts now – he wasn’t for a long time and was getting frequent spam posts.

  5. Diane —I agree with your comments about malpractice and that it was probably a bleed out. I, as a little girl, had a serious hemorrhage after my tonsillectomy a week AFTER the surgery. This was in the old days —–when family physicians routinely removed tonsils, etc… It so frightened our doctor that I almost died that he went into Dermatology. The only memory I have of it is a vision of much blood on the Nun at Holy Cross Hospital where I was admitted.

    Don’t be too hard on Thaddeus Pope! His scholarship on “medical futility and the LAW” is unequalled and he didn’t mean to be insensitive to the pain of the Mother. He has children of his own, I believe. He just wanted to make the point that under the LAW this patient IS a corpse and that it is “medically futile” to treat a corpse. .

    I have found him to always be very fair and neutral and he has published most all of the comments I have made. He even published a Blog recently called “Medical Futility — Medical Murder” and shared another Blog Article with those who read his blog about a unilateral DNR in Tennessee. The writer had lost his father to a unilateral DNR and the DNR was protested to the hospital before his father died but they ignored him. He then tried to get help from attorneys who refused him. He reported it to the Attorney General I believe, and he would do nothing! . .

    Professor Pope knows, because of my experience in Missouri with a unilateral DNR, that I have been trying to expose the epidemic of unilateral DNR Code Status, both overt/default status, and covert status, that removes the autonomy of the patients to decide when they are better off dead. This unilateral DNR is really against the criminal law in most states —unless medical futility is invoked, but since it is never prosecuted, the law has been ignored since 1991 when The Patient Self Determination Act was passed into law. .The elderly and the disabled are hastened into death without their informed consent with these unilateral DNRs when the Hospitals/Physicians KNOW that Medicare/private insurance will not reimburse for non beneficial over treatments, mistakes, errors, or exceeding the Diagnosis Related Group Caps. .

  6. It all boils down to the point that this is a valueable life and we should always give life our first priority. Put yourself in these parents place. To give up that fast, because of people’s negligence, you may never hear your little girls laugh again. You’re supposed to trust people that are calling your little girl a corpse? The very people responsible for her death? Give me a break. I’m not a sue happy person, but there should be severe consequences for, not only this little girls death (if that’s God’s will) but the way this hospital handled the family.

  7. Just for a moment, putting aside all the intellectual great arguments and discussion, I have a question to put all of this into perspective: (make that 2 questions):

    1. Who gets slated/targeted for “aid in dying”/ “assisted suicide”/”mercy killing” in relation
    to fame and economic status?

    2. Gen. Ariel Sharon died a few days ago, after 8 years in a coma, also called “brain dead” in the media, in Israel. Do you recall
    ever hearing/seeing/knowing of any discussion that his machinery be turned off?

    And finally, back in the U.S.A. (thank you Beatles), has anyone ever suggested that
    Dick Cheney, former Vice President, should consider “assisted suicide” as he has had
    numerous expensive procedures including heart transplant?

    Last week, I heard a chilling interview on NPR: a woman was telling of her mother’s
    poor health. She blamed it on her father’s getting a heart pacemaker and then having
    a stroke afterward. Her mother was his sole caregiver. She had to stay at home, pull him
    up the steps by his belt buckle….Finally, he died.

    The woman interviewed about her father and mother came to this conclusion: Her
    father should not have had a pacemaker. Old people, she said, should just be left to die.
    Then her mother’s health would not have been ruined,etc.
    NO ONE SAID ATTENDANT CARE AT HOME. Nada. Shocking, almost, to me. It’s part
    of the propaganda stream in media to get us dead rather than give us a decent life, sometimes
    portrayed as saving money or “helping us to die with dignity”.

  8. Thanks! Sandra Aronson, for pointing out that there is a double standard here and no protection of the elderly/disabled provided by our so called Free Press who could educate the people as to what is going on, but instead are bought by the “special interests” in our for-profit system who have the dollars to influence law and public policy and the corporate media and our Congress.

    Big Insurance who are the partners of Medicare/Medicaid have, of course, targeted the elderly and the disabled for budget constraints and cuts because the elderly and the disabled are the easiest targets. They have invaded the Medicare purse and dishonestly advertise that they will give you more than original Medicare because, of course, they influence original Medicare/Medicaid to give the “customer patient” less on Medicare/Medicaid in order to protect the profits of Big Insurance. . How can Big Insurance afford these big ads and afford to send sales people, who work on commission, into the homes of elderly individuals to sell Advantage and Plus policies unless they influence Medicare/Medicaid to hasten the death of the elderly/disabled and CAP or AVOID the costs. of end-of-life care that can’t legally be deemed to be “medically futile..” Then, of course, the hospitals fight back with DNR Code Status that is part of palliative care to cap their unreimbursed costs by sending the elderly/disabled to eternity earlier than necessary to cap unreimbursed costs with the use of covert and overt/default DNR Code status.

    Who gets hurt? —the elderly and the disabled —who are invisible and have no loud voice or money to influence public policy that the bioethicists have developed to serve their best interests and not the interests of the public. When the “Academics” is a democracy are bought out, democracy is threatened. .

    While current federal law and state law would appear to protect the autonomy of the individual patient to determine when they are “better off dead” it appears that $$$$$ are at stake and public policy will be developed to deny life-extending and life-saving treatments to the elderly and the disabled, even as these denied treatments aren’t deemed to be “medically futile” under some due-process procedure.

    The bioethicists and academics have hidden behind the 22 year discussion about “medical futility” and have enabled the medical profession and the hospitals to over treat patients for profit and under treat patients for profit, as necessary, to protect their profits

    The bioethicists have protected the autonomy of physicians at the expense of cruelly over treating the elderly on Medicare for the PROFIT motive. The People’s Medicare Purse is the subject NOW of control either by Big Hospital or Big Insurance who will NOW decide who lives and dies. The autonomy of both the individual patient and the individual physician will now be removed because of the greed of those physicians who did rob Medicare blind for many years because they could. That is over NOW. Big Insurance and Big Hospital will be at the table, and will Medicare/Medicaid and the individual physicians even be invited? .

    We, the people, sure need “single pay” to protect all of our people. We need to get BIG Insurance out of the Medicare Purse and in the meantime, the elderly and the disabled are in great danger of having their deaths hastened for the fiscal expediency of the for-profit sector of Big Insurance and Big Hospital. The individual physicians are losing their autonomy as the Hospitals buy out the private practices of physicians and become employees of the hospitals. The Department of Justice together with HHS are prosecuting “over treatment for profit” and the big FEAST on Medicare dollars is over, but who will protect us, the patients, against Big Insurance and Big Hospital who will manage us for their profits? .

  9. Interesting points at the end of the article. When my son, who I had to fight to keep alive initially, had a transplant as a baby; we were told that as an infant he would only get the organs from a gunshot victim under the age of 20. Since we lived in Chicago at the time, you pretty much knew what that meant…gang related and minority. I nearly puked on the floor. So some poor, minority gang victim would have his life truncated so that my white son could live. We elected to donate via living donor, twice in order to avoid dealing with that scenerio. BTW. Same hospital and doctor told us that they were only allowing us to keep our kid alive in the first place because we were educated, and had good insurance and family support structure. Racial profiling is alive and well in our hospitals.

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