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Brandon Peters, M.D.

Jahi McMath Died and What Followed Has Been Tragic

By December 31, 2013

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This afternoon the latest chapter in the demise and subsequent saga of 13-year-old Jahi McMath has been started when a judge granted an extension of life support through Jan. 7. Since her surgery and subsequent cardiac arrest on Dec. 9, this case has become the topic of conversation throughout the nation. The unusual situation has attracted the commentary of medical providers, lawyers, ethicists, public relations agents, and religious figures. It has sparked an intense, emotional debate across water coolers and dining room tables. It deserves our considerate reflection for what it can teach us about medical science, the end of life, and the responsibility of physicians.

There is a paucity of known facts in this situation. The family and their lawyer have released few specific details. Oakland Children's Hospital, bound by the privacy restrictions of the Health Insurance Portability and Accountability Act (HIPAA), has offered even less. Jahi underwent three surgical procedures for the treatment of her sleep apnea. This included a tonsillectomy, uvulopalatopharyngoplasty (UPPP), and removal of nasal turbinates. Though initially described as a "routine tonsillectomy," this degree of surgery in children is not routine. It is extensive. When performed on a child, the risk is high. Bleeding and death can occur, as it did in her situation.

In recovery from surgery, about 30 minutes after its conclusion, it seems that she began to bleed profusely before she went into cardiac arrest. What may have triggered this? It has not been publicly disclosed, and it may not be fully known until autopsy. It is possible that she may have choked on her own blood and that this may have led to asphyxiation, depriving her brain of oxygen. Another equally plausible explanation would be that she lost such a volume of blood that her blood pressure dipped and, in a state of decreased blood flow to the brain, it was irreparably injured. Either scenario may be associated with a heart attack, as has been described. Regardless, the insult was fatal.

After she was stabilized, it is inevitable that a neurologist was called in to evaluate her. This is a position in which I have found myself many times. After cardiac arrest, a cooling protocol is often initiated. This is meant to preserve brain function by decreasing the metabolic demands of the damaged tissues. Once rewarming occurs, typically after a few days, the neurologist is summoned to perform a formal examination. This is done off of all sedation. This is a critical assessment because it can determine to what degree brain damage has occurred.

Neurologists, more than any other doctor, are specialists that rely on an elaborate and sophisticated examination. It is a skill that is learned over 4 years of residency and even among intelligent, capable physicians, it can be challenging to master. There are seven parts, or categories, to the examination: mental status, cranial nerves, motor, reflexes, sensory, coordination, and gait. In the setting of a comatose patient, it is simplified to include the components that can be tested without cooperation on the part of the patient.

When I examine a comatose patient, as I would have done in the case of Jahi, I start by evaluating the mental state. This relies on assessing the degree of responsiveness to stimuli. The patient's name may be spoken loudly and any response is carefully observed. Someone who is simply asleep or lethargic may startle, open her eyes, or even respond by speaking. Someone who is in a coma, by definition, will never open her eyes. Commands are often given: asking to wiggle toes, give a thumbs up, or open the eyes. The key is that with each command a clear action follows. This must be consistent and reproducible. "Open your eyes." Eyes open. "Close your eyes." Eyes close.

If verbal stimulation is insufficient, physical stimulation may be applied. This might be done by pinching the nailbeds of the hands or feet. Again, any response is monitored for, and someone who is partially conscious may cringe or pull away from the stimulus. This part can be a little tricky because some movements are reflexive and not purposeful.

People with severe brain damage or even brain death may still have reflexive movements that are mediated not by the brain or brainstem, but by the spinal cord. One example is called the triple flexion response. In squeezing the big toe, for example, the foot at the ankle, leg at the knee, and leg at the hip may all draw up. This is a reflex, similar to testing the stretch reflex of the patellar tendon at the knee. It is an action of the muscle, peripheral nerves, and spinal cord, and doesn't involve the brain. To sort out purposeful movements, rather than reflexive ones, the painful stimulus is often applied to the top of the foot. If the person is conscious, they will move the foot away from the stimulus to escape the pain. The reflex will draw the foot towards it. These subtleties, and there are many, require the expertise of the neurologist to differentiate.

In performing a brain death examination, the functions of the cranial nerves are also carefully evaluated. These trace to the brainstem, which is required to breathe, wake, and to even have sleep. In particular, the loss of pupillary restriction to light, blinking with touching of the cornea, conjugate movement of the eyes with head movement (oculocephalic reflex), and the gag reflex would occur in brain death. Further testing of these functions might occur with caloric testing, in which water is squirted on the eardrums to test for a reflexive movement of the eyes (vestibulocochlear reflex). Finally, apnea testing in which the ventilator is stopped and the levels of carbon dioxide are allowed to increase while monitoring for effort to breathe is also typically performed during a brain death assessment. Someone who is brain dead will not breathe off the ventilator, ever. These tests may be repeated once, sometimes by a different examiner or often by the same person the next day, to ensure that the findings are the same. Brain death assessments in children are especially careful given the gravity of the situation.

There are other ancillary tests that may be done that are not routinely required for the declaration of brain death. Nevertheless, they may be used according to some hospital protocols. In large part, this determination is made by a physician (usually a neurologist) after a careful clinical examination. Supporting tests might include an electroencephalogram (EEG) that shows absence of electrical brain activity, blood flow studies that show no blood entering the skull, or even imaging tests like a CT scan or MRI.

Once brain death has been determined, in most states (including California) the person is legally dead. Brain dead is dead. This situation becomes more complicated when there are preserved functions of the cranial nerves or a diminished, but not absent, level of responsiveness. These individuals are not brain dead but often develop persistent vegetative state and may not fully recover. When the brain is damaged, but not dead, this may allow for sleep-wake patterns, roving eye movements, and varying degrees of interaction with the environment. For the brain damaged, the spectrum can range from minimal responsiveness to (rarely) normal outcomes. However, the zero point on this spectrum - brain death - is not something that can be recovered from and there is no chance of any return to consciousness.

Can the body function with a dead brain? Yes. Modern life support machines used in the intensive care setting can keep blood circulating, a heart pumping, and lungs inflating. When the brain is dead, when there is no chance of recovering the person who has been lost, it is not ethical to keep the body's tissues alive artificially. Once the machine is turned off, the body functions will also cease. Therefore, the machines are understood to be sustaining the function of tissues that cannot now, or will not ever, sustain themselves independently. Much like blowing air into an empty paper sack, when the effort to inflate the sack ceases, it stills.

Therefore, medical doctors are legally and ethically obligated to discontinue medically futile care when brain death has been determined. In most cases, the family will be informed of the situation, given a chance to gather and say goodbye, and the machines will be turned off. This is the standard of care. This is what happens in intensive care units throughout the world. For some reason, which is not fully apparent, this is not what happened to Jahi McMath in Oakland.

The window of opportunity was left open and ignorance flooded in. Belief that she could recover defied medical reason. Even despite multiple physicians attesting to her brain death, her family clings to the hope that she will come back to them. No one with brain death has ever done so. Lawyers took the place of doctors. Decision-making by those with the expertise, the experience, the understanding of medicine was undermined by legal wrangling. Religious figures, dubious ethicists, and a parade of attention-seekers marched into view.

The death of Jahi McMath is extraordinarily sad. Such a complication occurs rarely, thankfully, but when it does it shatters a family's world. It is not uncaring, unfeeling, or unbelieving for her medical providers to assert the fact that she died. When so determined, their role was to promptly turn off the unnecessary machines. A moment of loss has been prolonged into an enduring tragedy. It was the responsibility of her doctors to put an end to it. By deferring the termination of her life support, her death can be denied and the law can struggle with making decisions that should never have been offered to it. Her doctors failed her, in that moment of greatest need, and we fail her still the longer we perpetuate her inevitable end.

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December 31, 2013 at 2:26 am
(1) PatR says:

What a thorough explanation. Unfortunately, the hospital’s hands are tied by hippa and the family not permitting them to comment. The family is in denial through ignorance or sheer stubborness and one can only hope they are able to apply reason and begin the diffucult task of working through their grief.

December 31, 2013 at 5:39 am
(2) Barbara Spencer says:

Thank you for this informative article.

Sadly the family seems not to have benefitted from the additional time granted by the courts, and seems unlikely to do so in the future.

It is time to bring this very sad situation to a dignified, rational, and appropriate close.

December 31, 2013 at 7:57 am
(3) Steven E Frank MD MS FACP says:

Very well and eloquently stated

December 31, 2013 at 8:59 am
(4) UncleStuy says:

Outstanding Article!!!! Well, said…..Bravo!!

December 31, 2013 at 9:29 am
(5) Pealsmom says:

Great article. Reposting.

December 31, 2013 at 11:23 am
(6) claudis says:

My thoughts exactly. The experts have been removed, and the decision has been put in the hands of the uneducated. Because even though an attorney, a judge, are educated people, they are not experts in medicine. Lets keep doctors and nurses as the medical professionals, and they can deal with law. What’s the point in physicians learning this, becoming skilled in the medical field, when some john smithh with a law degree can say otherwise? The judicial systems has also failed this family.

December 31, 2013 at 2:53 pm
(7) Robin says:

Thank you, Dr. Peters, for this excellent article on an exceptionally tragic situation. What a shame that Jahi’s family are unwilling to let her rest in peace.

December 31, 2013 at 3:46 pm
(8) Snarkygirl says:

Thank you, Dr. Peters. What a thoughtful, eloquent article. It’s a pity that Jahi’s family have chosen to throw their support behind a legal remedy instead of accepting the tragic truth that she is dead; and, as hard as it would have been, to allow Jahi to die with grace and dignity instead of this spectacle that this situation has become. Attorney Dolan is in this for his own gain – there is nothing altruistic about his actions.

January 1, 2014 at 3:20 am
(9) Suzanne says:

Thank you for your article, which is very helpful and addresses a lot of issues that many of us have been wrestling with.

I’m definitely not disputing your “brain dead is dead” point, nor am I making an argument to keep Jahi on life support, but I wanted to offer you the perspective of a bereaved parent.

I lost my 12-year-old a year ago from cancer. I signed an order for her NOT to be placed on life support. As you will know, putting a child with terminal cancer on life support does not keep her alive (however we choose to define “alive”). But if life support had been presented as a reasonable option, what would I have preferred: my child’s cold body in a coffin six feet under (or her ashes in an urn) or my child’s warm breathing body for me to visit with, snuggle and touch. The latter for sure …

I’m not saying that life support should ever be an option for any brain dead child, but having lost my own child, I’m able to view this situation somewhat differently. I have sympathy with both Jahi’s family and Oakland Children’s Hospital.

January 1, 2014 at 6:48 am
(10) Amelia says:

This is a very thoughtful article. I know this family is crazed with grief. The court documents from the court appointed pediatric Neuro MD clearly states that the child has no blood flow to her brain. http://media.nbcbayarea.com/document…cted+Rpt_1.pdf Extension Granted to Keep Jahi McMath on Life Support | NBC Bay Area

My heart breaks for this family but she is gone.

January 1, 2014 at 5:00 pm
(11) Rosie says:

Well-written article. However, you are mistaken in your point that her doctors failed her by creating a window of false hope by keeping her on the mechanical ventilator after she was declared brain dead. After brain death occurs in California, there must be a “reasonably brief period of time” for family and relatives to gather prior to cessation of cardiopulmonary support. It was during that period that the restraining order against the hospital was filed on behalf of the family to prevent that from happening. The hospital has emphatically maintained their stance to discontinue the mechanical ventilation. It is purely the legal system that failed her and her grieving family.

January 1, 2014 at 5:50 pm
(12) LaurenG says:

I don’t think it’s right to blame the hospital for this. Their own court filing demonstrates they went through the process you describe, which is required by CA law. That’s when it got complicated. The family had the initial weekend, Dec 12-15, to come to terms, and apparently agreed. Then on Monday as the hospital proceeded to get the acknowledgment from the family that they were ready, the family demanded outside opinions and started looking for a lawyer. At some point there was a conversation about the insurance ending, with the family demanding the hospital pay for indefinite treatment of the deceased.

Now, if you had this family that just did. not. get. it, and did not trust you because they were alleging negligence in the first instance, and you knew outside opinion was going to concur and hopefully set them straight, is that an unreasonable course of action? They were working to get the family to “get it.” That’s the right objective, I think. That’s where the mother’s accusation of them being “insensitive” came from, because obviously they had to escalate their language to try to get through to these people and the head of peds said she was “dead, dead, dead” which unfortunately didn’t help them to get it. (nothing is going to help them get it but watching decomposition).

I think they were trying to do not only what was right for the family, but what was right for the hospital in the larger sense, neither of which I would call “failing Jahi.” Jahi was dead; the concern was for the family to process that. Who could have foreseen this circus? What was the alternative for CHO, to have these people going berserk in ICU and calling the media to accuse them of killing their child? The goal was acceptance, just like with every other family. I think they did the ethical and sensible thing and tried to give them extra help to understand and let go. It just didn’t work. They couldn’t foresee this kind of crazy. I don’t think that makes it their fault.

January 1, 2014 at 7:02 pm
(13) PedsNeuroMD says:

Great summary. Although I have done quite a few brain death exams on kids it remains one of the hardest parts of the job. I think part of the issue in the lay community (and even some nonneurologists) is that brain death is tossed around as a term with little understanding as a synonym for severe irreversible brain damage. I feel like every year I have the same discussion where I am telling some first year critical care fellow that I cannot just declare someone brain dead because they have respiratory effort, or some other brainstem function, because it is not just a medical and prognostic diagnosis but an actual legal one as well. If it is not whole brain death, they are not legally dead (it doesn’t mean the prognosis is necessarily any less bleak, which I make clear depending on the case).

This case worries me. I have not run into a case like this with brain death but once in awhile I have run into (blessedly very very rare) families like this who are sadly in massive denial and unmoored from reality. They have magical thinking and reason and logic may just not work, even with time I agree with the above poster that the hospital was probably trying to give them time to come to terms with what had happened, and it really backfired in this case. It is really a shame that valuable critical care beds, in the middle of flu season no less, are being used for this when they could be helping living and seriously ill children.

January 2, 2014 at 2:07 am
(14) Dawn says:

I sincerely feel bad for the family. But I can’t help to wonder if some of the false hopes come from guilt. The grandmother is an RN so there is some medical knowledge in the family verses speaking to family who does not understand any medical knowledge. I can’t help to wonder if the family is feeling guilt for electing to have a procedure with much higher risk verses looking at other options or for not intervening on the girls obesity at an earlier age. This would explain why the family continues to claim she had a tonsillectomy instead of stating she had a more extensive procedure.

January 2, 2014 at 8:41 am
(15) ziggy says:

granny is NOT an RN but supposedly an LVN (does that even exist anymore? it still requires licensing). i think when the facts come out (due to HIPPA) the only scenario i can figure is that the family did not follow post op orders explicitly – with that extensive surgery NO COLD LIQUIDS would be allowed, certainly nothing solid, and GRANDMA is reported to have suctioned the girl when staff was on shift change because she could not wait for staff to appear. i’ve been to MANY shift changes, and there is always someone available for AN Emergency… in PICU there would be always someone to respond. the fact that the family is ignorant about codes and emergencies in an intensive care unit is totally astounding.

January 2, 2014 at 5:56 pm
(16) Guest says:

“Modern life support machines used in the intensive care setting can keep blood circulating, a heart pumping, and lungs inflating.”

The mother has said that she will not believe that her daughter is dead as long as there is a heartbeat.

So, out of curiosity, if Jahi is forever supported on “life” support, how long would it take her heart to stop beating even if it were connected to “life” support? It’s really death support at this point but why does her heart keep beating? I assume if the support were removed, it would stop. But if it were not removed, how long?

I think insurance should stop covering the patient once the declaration of brain death has been made. After that, it should be the family’s personal responsibility financially to entertain their own grief process.

I personally believe the machines should have been turned off within a set period of days after the declaration of being brain dead (with a reasonable time for family to say their goodbyes for some closure but not an unreasonable amount of time that it invites this expensive crazy that is happening now)

January 3, 2014 at 9:39 am
(17) S. Sterling says:
January 3, 2014 at 11:01 am
(18) DocBastard says:

Very well written, Dr. Peters. I have been following this story since it first broke, and it’s heartbreaking and monstrously frustrating. As a trauma surgeon, I have declared numerous patients dead, and I’ve lost many head-injury patients to brain death. I fear that this scenario will set a terrible precedent that families can choose when a loved one is dead. My hope is that 1) the court (which should NEVER have been allowed to intervene in the practice of medicine in the first place) finally allows CHO to turn off the machines and 2) the family eventually finds peace.

January 3, 2014 at 6:30 pm
(19) Tashab says:

Very thorough article. Really wish someone would explain it to the family this way so that poor baby can rest in peace. I’m a mom and could not imagine making such a spectacle over my child’s corpse. I’d be more interested in knowing what happened than holding on to a body. For them to be so religious, the are certainly not trusting what God has done.

January 3, 2014 at 9:13 pm
(20) Nicey ELLER says:

Thank you. Impressive and clear. I am very sorry for what has happened and continues. Thank you again.

January 4, 2014 at 11:36 am
(21) IfItWereYourChild says:

I enjoyed reading this article, it did answer a lot of questions. However, the matter of fact comments are making me sick. People can be so sure in a situation that they have NOT been put in. If it were YOUR child, how do you know you would be so at peace with “letting them go”? None of was there to see what happened in post opp, so how do you say there is always someone on staff or that the family done something wrong? I doubt that a family member had a popsicle in their purse or something, I believe the popsicle was offered by the hospital staff. As a parent, I doubt think I would trust anything the doctors nor staff had to say after they showed no urgency as my child bled profusely (of that was indeed the scenario). I know there are many details that we don’t know. I just wish people were more empathetic since sympathy never seems to be in order when it comes to children of color. You don’t know how you would react if it were YOUR child until it IS YOUR child .

January 4, 2014 at 1:01 pm
(22) venomousfeminist says:

This is such a difficult situation for all involved. Medically and legally the child is dead. This is tragic. It is made more tragic by the mother’s understandable desire to deny the reality of her child’s death.

The determination of brain death was made by two doctors who were affiliated with the hospital. That should have been enough, but in the case of a child, the court made the decision to order an independent doctor to examine the child, which, statutorily, was an appropriate order based on the aforementioned affiliation of the examining doctors. The further delay in terminating life support was to allow the family to appeal the order. This is required by law.

Once the family filed in court, the legal system must allow due process. There is no way to circumvent that. The hospital has done what it is required to do by law, and I don’t think it’s appropriate to blame them. The courts are doing what is required by law.

The blame here lies with the legal advisors of the family who are wrongly encouraging hope to further a political agenda. And some of it lies with the family themselves who are encouraging the media circus this has become.

At the center of this tragedy lies a little girl who has died, and is being denied the dignity usually accorded to those who are deceased. It’s not a question of race, it’s not a question of empathy, it’s a question of affording this child the dignity to be released into whatever comes after the body has died.

January 4, 2014 at 9:20 pm
(23) BayAreaObserver says:

An excellent review of brain death. I would comment on one poster’s statement that “sympathy never seems to be in order when it comes to children of color.” While that is that poster’s impression of American society, I can tell you with great certainty, based on personal and professional experience with Oakland Children’s Hospital, including the Pediatric ICU, that that hospital cares for critically ill and injured children of any color with the utmost diligence, skill and empathy. To suggest otherwise is to impugn the reputations a superb hospital and the dedicated individuals who work there.

January 5, 2014 at 3:34 pm
(24) AaronRN says:

Dr. Peters,

Excellent analysis. You provided a great deal of insight to this tragic case. Thank you very much!

January 6, 2014 at 4:07 am
(25) Nurse Penny says:

Thank you, Dr. Peters! As a mother and a registered nurse, this case disturbed me on a number of levels and I wanted to learn more about what was actually happening from a medical standpoint.

Prior to finding your article, all I seemed to find were extreme personal opinions of lay people who were feuling this debate in the court of public opinion via social media sites.

This little girl needs to be laid to rest. This mother and her family need a kind, compassionate member of the healthcare team they can trust to help them face this very tragic reality. Perhaps it is a nurse or doctor or social worker or chaplain or anyone else…but someone needs to breakthrough her suspicious, grieving persona and connect with Jahi’s mommy inside of her

January 6, 2014 at 5:26 am
(26) Atticus FInch says:

While I have extreme compassion for anyone who loses a child,after the first day, it should have been clear to anyone (esp. people who are familiar with Oakland,CA, as I am) that this was little more than an attempt by the mother and uncle to use the body of Jahi to extort money from Childrens Hospital — e.g. “get on the media, make Children’s look bad, and get them to pay us to make us shut up and go away” When THAT ploy didn’t work, Plan B was announced…a “protest” at the hospital. If you know anything about Oakland, that was a threat to have every window in their bottom floor broken, the hospital’s functions disrupted for a day or two and a lot of damage – physical and to its reputation. Something went wrong with that plan, too — not enough people or fear they’d be implicated legally in violence or something. Plan C was to go online and prey upon the emotions of a lot of people who don’t understand science and/or don’t trust medicine and con them into contributing money to “keep Jahi alive.” The result of this macabre circus is now that the family is stuck wiht a corpse that no medical professional or facilitiy will treat as though it is still alive (there is a death certificate). Which means that pretty soon, the family is going to have to come forward with egg on their faces and admit that well, er, yeah, she IS dead as the doctors said. The creepy question now is where do they have her body stashed until they figure out how to make that announcement. The only place I can think of is a morgue…unless they have it in a hotel room somewhere… (“Little Miss Sunshine” runs through my head…)

January 6, 2014 at 11:14 am
(27) ICU&OR RN says:

Thank you for a compassionate and factual essay on this tragedy. It is cruel for this situation to be prolonged. The lawyers have subverted the law. Shameful.

January 6, 2014 at 12:51 pm
(28) michelle says:

It is possible that she may have choked on her own blood and that this may have led to asphyxiation, depriving her brain of oxygen. Another equally plausible explanation would be that she lost such a volume of blood that her blood pressure dipped and, in a state of decreased blood flow to the brain,
She should have been more closely monitored, if this is such a dangerous procedure, she should have never choked on her blood, and they should have been there to see if her blood pressure dropped they could take action.

January 10, 2014 at 1:17 pm
(29) Laurie says:

Very well written article with a thorough explanation of brain death exams and declaration. I am a healthcare professional who has spent the past 10 years working alongside RNs/MDs in many of the ICUs in Northern California, including CHO. My only point of disagreement is on your statement about placing fault/blame on CHO for delaying the discontinuation of mechanical ventilation (I refuse to refer to it as “Life Support” because that in turn creates an assumption that she is still alive and she is NOT) “It was the responsibility of her doctors to put an end to it. By deferring the termination of her life support, her death can be denied and the law can struggle with making decisions that should never have been offered to it. Her doctors failed her, in that moment of greatest need, and we fail her still the longer we perpetuate her inevitable end.”…………California law states that families are to be given reasonable amount of time to gather/say good-byes to their loved one. It is either up to the hospital to define what is a reasonable amount of time. Some hospitals have written policies in place with an actual amount of time i.e. “6 hours from the second brain death note”, but most hospitals leave it open to interpretation of each individual case. They look at what is best for this family in this particular situation. I truly believe that CHO was providing them additional time that they felt this family was going to need to come to terms with reality and acceptance of her death. Unfortunately, it backfired on them in an unimaginable way! In no way do I blame the doctors for failing her and for allowing this to escalate in such a manner. I place blame with the family’s attorney and the judge. Two individuals who apparently are ignorant to how the process occurs every single day in ICU’s around the country.

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