Close up of stethoscope and gavel on white background.

Close-up of stethoscope and gavel on white background. Photo courtesy of Coprid via Shutterstock

UPDATE: The Alameda County coroner has issued a death certificate Friday stating Jahi McMath died on Dec. 12, according to the San Francisco Chronicle. The Oakland Hospital where McMath remains on a ventilator has reached a mediated agreement with the girl’s mother. Nailah Winkfield will be allowed to have a critical care team move Jahi to a care facility, knowing that the girl may suffer cardiac arrest during the transfer, the Chronicle reports. Winkfied reportedly said her daughter is “showing me improvements.”

ORIGINAL POST:

(RNS) Is Jahi McMath, the 13-year-old whose entire brain has ceased to function, dead or alive?

Must doctors at a California hospital operate to prepare her for a move to a care facility in New York even though the hospital insists she is dead? No doctor can be compelled to treat the dead.

Or is she alive now and wanting to live on? Her mother, Nailah Winkfield, insists that removing the life-support machinery, which is performing all Jahi’s bodily functions, is the same as killing her daughter. Only a court order keeps Jahi still on life support, and that order expires on Tuesday (Jan. 7).

On Friday, a federal magistrate was expected to begin mediating the three-week-long dispute between Children’s Hospital & Research Center in Oakland and Jahi’s parents. But the battle goes beyond the courtroom, the hospital, and Jahi’s family because American society still struggles with defining death.

Jahi, a once-healthy girl who only went to the hospital for a simple tonsillectomy, cannot make a choice.

Thinking and speaking come from the cerebral cortex. According to doctors’ testimony, Jahi’s cerebral cortex stopped functioning after a cascade of post-surgical complications left her brain without oxygen. Her brain stem, which controls involuntary actions such as breathing, was also destroyed, the doctors testified.

In this critical way, Jahi’s medical situation differs from the headliner case of Terri Schiavo in March 2005.

Although the brother of Terri Schiavo has rallied to Jahi’s parents’ side, Schiavo was not brain-dead. She had some brain stem functioning. The life-support-or-death fight over Schiavo turned on the issue of her quality of life without consciousness.

Such distinctions are a 20th-century dilemma, said William Colby. He is the ethicist and attorney who successfully argued for the parents of Nancy Cruzan to be permitted in 1990 to remove life support for their permanently unconscious daughter. The case turned on testimony by someone who said Cruzan would not have wanted to endure on machines.

“It is so hard to communicate the legal definition of death because, for most of recorded time, we didn’t have one and we didn’t need one. Your heart, your brain and your lungs all stopped at the same time. Technology has changed that equation,” said Colby, who is now general counsel for Truman Medical Centers in Kansas City, Mo.

Colby acknowledged it is hard for a parent to look at a child who appears, even mechanically, to breath, and accept that the law and society view this as a dead body.

The 1980 Uniform Determination of Death Act defined death as “the “irreversible cessation of all functioning of the brain, including the brain stem.”

But technology can keep people apparently “alive,” leaving patients or their families with wrenching decisions. Two states, New Jersey and New York, allow religious exemptions for people who refuse to accept brain death criteria. 

Research shows Americans have mixed views on when to let go of life. Two in three U.S. adults (66 percent) say there are circumstances when a patient should be allowed to die, according to a Pew Research study released in November.

However, the answers are flipped if the question is asked about babies:  57 percent say an infant should receive as much treatment as possible in the case of a life-threatening birth defect, even if parents want to refuse treatment.

Whether society considers adults, babies or teens, Colby sees overarching questions: “What is the purpose of medicine, when do we use it and when do we stop?”

John DiCamillo, staff ethicist at the National Catholic Bioethics Center in Philadelphia, says humans have “no way to know when there’s been metaphysical death — the separation of the soul. But we can trace the signs in the body.”

“If there is any lingering uncertainty, it must be medically resolved” beyond doubt, DiCamillo said.

“If there is any sign of brain stem function, even if someone is in a persistent vegetative state like Schiavo, that is sufficient to say this person is alive. And this person deserves the full dignity of the human person and must be sustained with proportionate medical treatment.”

That was the ethical argument behind Catholic support for Schiavo’s parents and brother when they fought her husband over maintaining the woman’s artificial feeding and hydration. Every court found for the husband, and Schiavo died in 2005.

In Jahi’s situation, DiCamillo said if rigorous testing showed there was no medical doubt that her entire brain no longer functioned, “there would be no Catholic ethical objection to ending mechanical support for her.”

Children’s Medical Center did not return a request for comment. Federal privacy laws do not allow the center to release specific information on Jahi’s medical situation. The hospital has issued press releases expressing sympathy, calling her deceased and linking to doctors’ statements to the court that repeatedly say her entire brain is irreversibly destroyed.

Not all ethicists agree, however, with the very idea of a uniform legal standard for death.

Dr. Griffin Trotter, professor of health care ethics and of surgery at St. Louis University, said: “The idea that there is a uniform conception is, to me, tyrannical. To enforce a conception of life and death is an overstepping by government.”

“Existentially, you could ask why would you want to continue treatment for someone whose brain is no more biologically functional than a fern. But ferns are alive and these people’s cells are alive, even if only by artificial means.”

Still, Trotter sees the moral distress of the hospital’s position. It is the antithesis of the medical mission to impose futile treatment, he said.

Meanwhile, Jahi’s family clings to hope for their daughter’s life. That hope can sustain them or it can prolong their agony, said Dr. James Salwitz, a New Jersey oncologist who teaches courses on death and dying at Rutgers University and writes a blog on end-of-life issues.

Over decades of bringing difficult news to patients whose lethal cancers cannot be halted, Salwitz said he’s seen false or misdirected hope exact a terrible price. It can transform into a powerful force — denial.

“Denial is an important survival mechanism we all use. But when denial becomes false hope, bad decisions get made and people suffer significantly more.”

But if people face difficulties clearly, Salwitz said, “they can be incredibly powerful, incredibly strong. If they have the tools to approach the challenges of death, they can share, they can teach, they can love.”

KRE/AMB END GROSSMAN

18 Comments

  1. There’s a petition to try to get Jahi’s case looked at by the White House–please sign if you feel led to do so (quick and easy sign up process of name and email and then verify email): https://petitions.whitehouse.gov/petition/publicly-address-inhumane-treatment-jahi-mcmath-and-protect-her-life-accordance-her-1st8th-amendment/M5GJMX7T

    • So you are saying that doctors/hopsitals should be able to exercise greater rights than a child’s parents when it comes to health/life issues simply because they are Catholic?

      The arguments about “a uniform standard for death” is a useless strawman. The real issue is hospital overriding the rights of a parent to make decisions concerning the care of their child. It is always within the rights of a parent to withhold treatment for a child which is not medically necessary or likely to change their condition.

      • Cathy Lynn Grossman

        Larry, are you saying that individuals can compel a hospital or physicians to perform surgeries or treatments on corpses in violation of medical ethics? Can they be compelled to maintain cases of medical futility — no treatment is going to lead to improvement — on the wish of people who do not want to accept that no progress can be made? If so, then, in about a month, every bed in the ICU will be occupied by people on machines who will never improve, never go home, while their loved ones linger in unending limbo, demanding miracles of man and God as if they could order them off a fast food menu. A hospital ethicist once told me that when the family of medically futile patients who are physically dying say they want to stay for God to work a miracle rather than shift the patient to hospice or custodial care, she says she, too believes in God. But she believes God can do what God pleases whereever and whenever God chooses.

        • No. You are right.

          Medical necessity is medical necessity. I vigorously oppose going against bringing religious ideas into the mix here. If the doctors are willing to declare someone dead, in good conscience and to the best extent of their knowledge, that should be it.

          The idea that we should always keep people on life support or that someone would even consider such things for religious reasons is horrific.

  2. We can rightly ask when we can sensibly ignore what science tells us about human life. I don’t think there are any examples of people who have been declared brain-dead regaining consciousness and returning to normal life.

    And then there’s the question of motivation for prolonging what isn’t even life. Who is paying the material cost? Is the family paying for keeping the blood flowing through the girl’s vains? Somehow I doubt it.

    For certain, however, those telling us the story with the agenda being “support this battle to save Jani” will say nothing about these costs. Doing so would cause them to lose public support. I wonder whether the organizers of this petition have given a moment’s thought about this. Are they willing to help defray the costs? I doubt it.

    Facing the terrible fact of a loved one’s death is most difficult. None of us wants to lose a loved one. That does not mean it should be ignored, denied.

    Financial risks have a marvelous way of testing commitment. How about it, Shirley?

  3. Stem cell treatments have been shown to restore some of the brain tissue of victims of cerebral palsy victims. There seems the possibility that the family of this child could attempt to treat their daughter with stem cells. Also, high doses of Omega 3′s have been shown, in at least two cases, to restore function and allow a person to wake from a coma.

    The family of this child has a right to pursue some of these treatments. It might not bring back the child with her memories and abilities fully intact, but there may be some hope to restore some function.

    The hospital has only itself to blame for creating this situation, and while I understand their views, their treatment of this child’s family has been abominable.

    • Cathy Lynn Grossman

      Everyone is unsettled by these difficult circumstances. But, it’s not a matter of whether her parents will be able to share life with Jahi, even if she cannot communicate any idea, wish or will.
      Jahi is not in a coma or a vegetative state. Unfortunately, Jahi’s entire brain — the thinking parts and the involuntary action parts, cerebral cortex to brain stem — no longer function. Her entire brain has been shut down with no signals since mid-December. A parade of physicians, including one selected by the family, made statements to the judge that her brain death is irreversible. There are no accepted clinical treatments, or even experimental ones, for total brain death.
      It is terribly sad for her parents.
      It is also terribly difficult for the Oakland hospital staff.
      And somewhere out there are young people who might have benefited from an organ donation so it’s terribly sad and hard for them and their parents, as well.

  4. I certainly feel for the family. I can’t imagine having something as routine as a tonsillectomy go this wrong.

    But I can’t help but feel emotions are ignoring facts. No activity is no activity. This is no coma. This isn’t a “persistent vegetative state.” Terry Schaivo could breathe on her own. There’s nothing keeping this girl “alive” except machines. As someone earlier pointed out, no one has ever come back from complete brain death, and even if one did, what would come back? Her smiling, happy daughter? I seriously doubt it.

    I remember during the Schaivo case her parents were saying she never expressed her wishes, but has anyone ever expressed a wish to live as a very expensive vegetable? Has anyone ever said “yes, spare no expense to keep me laying in a bed for decades with a feeding tube and perpetual pajamas”?

    • As a medical student, I was taught that there is no “routine” surgery.
      And there is no simple surgery, just simple-minded doctors and nurses. Every surgery has risks, just as driving your car has risks. A lot of people don’t make it to their intended destinations.

      In this case, there were significant, obvious risks. Sleep apnea patients have compromised (think smaller) airways to begin with. Fat is distributed throughout the body, and some people accumulate a lot of it beneath the lining of their throats and in the neck region, pushing inward and compromising the air passages. Congenitally adverse anatomical features can add to the compromise. Surgery initially produces swelling and bleeding, which when uncontrolled can lead to further airway compromise, even obstruction and death. (Incidentally the success rate for sleep apnea surgery is in the range of 30-50%, and there is a significant rate of complications, including abnormal speech, stricture or stenosis, reflux of liquids into the nose, and others. It is also some of the most painful surgeries that are performed. The much safer and simpler alternataive to surgery is to LOSE WEIGHT! I do not perform or advocate sleep apnea surgery.)

      Nor is there any “routine” recovery from anesthesia, especially for children, and especially for children with compromised airways who have just had surgery on those airways. As a practicing ear, nose, and throat surgeon, I have difficulty impressing this, even on recovery room nurses. (Recovery rooms have been re-labeled PACU’s, or “post-anesthesia care units,” in recognition that not all patients recover and that they are there for care.)

      The appropriate way for a patient such as Jahi to be “recovered” in a PACU is with one-to-one coverage by an RN who is standing at the head of the bed or guerney, with a working suction at hand, constantly judging the movement of air, visually by movement of the chest, by listening to movement of air, and by feeling movement of air with the hand, until the patient’s vital reflexes return. The working assumption has to be that the patient is NOT going to recover and that the airway needs constant observance visually and by ear. These responsibilities have been delegated to the pulse oximeter, which sometimes only alarms AFTER the airway is obstructed (IF it is still properly located on the patient) and can unfortunately be a late notification of the result of a chain of events that have occurred unnoticed, timely recognition of which would have precluded the now tenuous situation in which seconds are made all the more precious and time left for action to prevent disaster is shortened.

      What a surgeon gets in the typical recovery room or PACU is a nurse who assumes that the patient will recover, because every patient they’ve ever attended did recover. So she stands or sits at the foot or side of the bed, filling out near-useless paper forms in the chart, documenting routine events, being lured away from the patient to help care for other PACU patients, answering the phone, etc., but NOT attending the airway. Typically the suction tubing and suction tips remain in their respective packages, so that when they are urgently needed, precious seconds, or even minutes, are lost. The result is delayed recognition of an airway problem when it does develop, and delayed ability to handle it appropriately and timely.

      In my experience, the surgeon’s insistence on the proper conditions and technique to recover a patient, especially a child, who has a much smaller and more easily obstructed airway, is met with resistance, even defiance by the PACU nursing staff. It is received as criticism, accusation of incompetence and/or ignorance, and interference by the surgeon. The nurse typically sees herself as competent, caring, and knowledgable, and any suggestion to the contrary is threatening and offensive. “How dare he tell me how to do my job…” Consequently most surgeons accept the status quo, rather than acquire a reputation as an overly demanding, complaining, “disruptive” rebel-rousing doctor.

      So these are the factors that create a scenario such as Jahi’s. It is another case of politicial correctness (being non-disruptive) gone awry, potentially working to the great disadvantage of the patient. My attitude has always been that I am the patient’s only advocate, especially when he/she is unconscious in the hospital, and that that is my primary role. But that attitude can get you in front of a hospital committee for investigating “disruptive” doctors, and can even lead to loss of practice privileges. My position would be that the loss of a patient is thousands of times more disruptive than a demanding doctor.

      The answer is education, but when the people in charge refuse to be educated, this scenario will repeat itself. Very unfortunate.

  5. This just demonstrates a couple of things things:

    1. Its never too early to write a living will. Instead of making people fight over what they think your wishes would have been in such a situation, a simple statement would have told everyone.
    [I know its not applicable to a child in a hospital, but it is good advice for everyone]

    2. Don’t trust Catholic hospitals! They value adherence to religious dogma over medical necessity, ethics, or competence. The only reason why this situation exists is because the hospital committed malpractice which caused brain death in the first place. They are refusing to follow the demands of the person legally responsible for her life.

    Somehow being Catholic is seen as being given the right to run roughshod over the consideration others.
    [See also ACA contraception nonsense]

    • Larry – there are a number of reasons she coded, it is NOT without doubt that it was someone’s “fault”. You are jumping to conclusions without facts.

  6. Correction to your article: This was the third surgery the child had undergone and she was not going for a “simple tonsilectomy”.

    No one goes to surgery without signing dozens of forms acknowledging you understand ALL surgery is risky and DEATH is a complication that could happen.

    Instead of putting the child on a diet – or never having over fed her – they took the lazy way that guaranteed to put the child at risk and that is the addition of obesity with fat all over your organs as obesity does.

    No such thing as a “simple” surgery and you do many a disfavor who will blindly believe that it is possible to have a “simple” surgery all the “possible death” warnings aside. MANY doctors push surgery to patients, I had one do so almost criminally – NO real reason to do so – other than she wanted the practice or additional fees it would generate. Nothing about my situation was not going to resolve itself with a little time. Which it did.

    After two previous surgeries mucking about in her throat – any hope for “simple” was probably out the window as well.

  7. There are cases in the literature over the last several decades of supposed brain death reversal – mainly in infants and fetuses (where you may still have an active neurogenesis niche) – none ever had positive long term outcome, but the papers do exists in PubMed if you look for them – and they are hotly contested amongst thought leaders – like this one – http://www.ncbi.nlm.nih.gov/pubmed/19818943 – And do keep in mind, the brain death diagnosis does NOT constitute zero cerebral activity as is commonly mentioned in the press – it is “no cerebral activity greater than 2 micro-volts” – most thought leaders in the space acknowledge residual “nests” of neuronal activity and residual blood flow do indeed exist in the brain dead – just not enough to support an “integrated whole person” – Since 1968 and the Harvard Ad Hoc Committee on Brain Death, the definition of death has remained static, in spite of 1) the major thought leaders in the space acknowledging that brain death is a process, not an event, and 2) the continued development of new technologies, including those of regenerative medicine – and on top of that, even in the year 2014 we really have no widely accepted idea on how memories are truly stored in the brain, and how much of the brain can be destroyed while maintaining identity – Ira S Pastor, CEO, Bioquark Inc. – http://www.bioquark.com – pastor@bioquark.com

  1. […] Family, ethics, medicine and law collide in Jahi McMath's life — or death (RNS) Is Jahi McMath, the 13-year-old whose entire brain has ceased to function, dead or alive? Must doctors at a California hospital operate to prepare her for a move to a care facility in New York even though the hospital insists she is dead? No … Read more on Religion News Service […]

Leave a Reply

Your email address will not be published. Required fields are marked *

Comments with many links may be automatically held for moderation.