The tragic circumstances that left Jahi McMath brain-dead and in a coma following complications from surgery to treat sleep apnea created an ethical firestorm where the question became, who decides when dead is dead and whose definition of death is the binding one?
McMath was transported from Children’s Hospital Oakland to an undisclosed location in New York. Nailah Alexander, Jahi’s mother, retained attorney Christopher Dolan to represent the family in their fight to forbid the hospital from removing Jahi from a respirator. Dolan authored an editorial for the Los Angeles Times and defended the family’s decision to defy the opinions of doctors and prolong Jahi’s life.
It has been amazing to see how many people think they have a right to an opinion about this child, this mother, this family and the issues in this case. Self-righteous commenters and commentators who have no firsthand knowledge of the facts or the people involved pretend they can somehow know not only what’s best for Jahi but what’s best for society in such situations. They take it upon themselves to proclaim what will relieve or prolong the family’s suffering, what will desecrate Jahi or honor her, and they feel justified in sharing it with the world in mean-spirited terms.
For the most part, those who have attacked Jahi’s family argue these simplistic, uninformed points: The family is either stupid, misled by their lawyer or trying to exploit the system. Why can’t they simply accept the doctors’ decrees? Why should they be different?
What happened to Jahi at Children’s Hospital Oakland will most likely be a matter of litigation. But if you were Jahi’s mother, would you want the doctors and hospital authorities you believed had contributed to — or even caused — your child to be declared “brain-dead” making final decisions about her?
The final decisions to terminate further care should be made by both the family and the doctors based upon the facts and the best medical advice. The prognosis for Jahi is she is brain-dead. While physically her body remains “alive”, whatever it is that made Jahi who she was perished along with her brain activity. Medical professionals (who have not examined McMath) are grim about what will eventually follow.
“This is basically organ support; it’s not life support,” said Dr. Neal E. Slatkin, a neurologist and chief medical officer at San Jose’s Hospice Of The Valley. “Her organs are alive, but she’s not alive. Her organs are slowly dying. Her fate is written; it’s just a question of when everything fails.”
As the family’s spokesman, Dolan told a different tale on January 8, “Doctors are optimistic that her condition has stabilized and that her health is improving from when she was taken from” I can confirm the trach and g-tube procedure on Jahi McMath was a success and she is doing very well and now getting the treatment she should have gotten 28 days ago.”
I understand why the family is going to these extraordinary lengths for Jahi. In a similar situation I might do the same for my daughter or son. But at the Even IF Jahi were to waken from her coma, what of it? She will be dependent upon machines and 24-hour care for the rest of her life. There is no procedure, no process, no medicine and no cure that will resurrect her brain. Jahi McMath is a limbo where she is not fully dead, but neither is she entirely alive.
A small dose of skepticism of the medical community is healthy because doctors are human and humans get things wrong, but skepticism combined with pure reactive emotion and cynicism does no good. The experts are experts because they have the experience neither attorneys or families have. This is why I have asked for and received the permission of Dr. Christopher Johnson, an expert in the field of pediatric intensive care and the author of Your Critically Ill Child: Life and Death Decisions Parents Must Face to share his insights on the sad case of Jahi McMath:
This sort of thing — pediatric intensive/critical care — is what I’ve done for 35 years. I’ve been in this situation, or similar ones, many times. I have a couple of comments about this case. Bear in mind that we probably don’t have all the relevant information.
Regarding the child’s cause of death, I’d lay odds she had sudden bleeding from the tonsilar bed, a well-known complication after tonsillectomy if the clots fall off. After that I think she probably lost her airway, either from obstruction from blood clots or some other reason. She was a large girl undergoing the procedure because of sleep apnea. Such people often have difficult upper airways to access and control with a breathing tube in a hurry, and that was what she needed. The back of the throat is also a mess immediately after this kind of surgery and a rebleeding tonsil site can look like the Mississippi River back there. I know this from experience. It’s a difficult situation to manage. I assume she went 4-5 minutes without an adequate airway, leading to brain damage and subsequent brain death. This is a common progression after anoxic brain injury from any cause.
So what is brain death? It means no function at the level of the brain stem or above. Function stops where the spinal cord joins the base of the brain. How do we know somebody is brain dead? There are a series of standard and relatively low-tech bedside tests to determine that. We first make sure the patient has a normal body temperature and has no sedating drugs in their system. There should be no purposeful response to any stimuli. The muscles are flaccid. Then we test for brain stem reflexes. One of these is response of the pupils to light — there should be none. There needs to be absence of normal movement of the eyes to motion of the head (called doll’s eyes) or no movement when we put cold water on the ear drum (called cold calorics); both of these measure the same reflex. There should be no blink reflex, called the corneal reflex, when a wisp of cotton is brushed on the eyeball. There should be no gag reflex when we stimulate the back of the throat with a wooden tongue depressor. Finally, the last test of brain stem function is the apnea test: we allow the blood carbon dioxide level to rise and look for any reflex to take a breath.
What happens after the bedside brain death determination varies a little from hospital to hospital. Many hospitals require 2 tests 24 hours apart; if both show no brainstem function, the patient is legally dead at the conclusion of the second test. As an alternative, we can do the bedside test followed by a simple scan to determine of there is any blood flowing to the brain; that gives us an immediate answer, and many hospitals require this for children. If the bedside examination shows no brainstem function and the flow study shows no blood flow to the brain, the patient is legally dead. I write the time of death on the death certificate as the time of the scan.
When I do these things I always want the family with me and watching what I do as I explain what is happening.
That all seems straightforward. As with this case, sometimes it’s not. For one thing, not all cultural traditions recognize brain death as real if the heart is still beating. I’ve been in that situation. For another, sometimes there are reflexes at the spinal cord level that look as if the patient is alive. That’s a difficult thing to watch.
The upshot is that I have continued support — mechanical ventilation, often medicines to support heart and other organ function — on a brain-dead patient for some time. Usually this is because the family wants some time to cope with things, or else there is a family member traveling to the hospital. I’m always OK with that, up to a point. A key principle here is that a family cannot force me to behave unethically, and continuing organ support of a dead person is disrespectful of the dead — mutilating to the body. Many ethical traditions, including my own, refuse to do that.
The longest I have ever continued organ support on a dead person was 6 weeks. We had a huge court battle similar to this case, with the court ultimately allowing us to withdraw support. A family member then attempted to enter the hospital with a gun. It was ugly.
The bottom line is that, with the exception of the one case above, I have always been able to mediate the situation by listening to families, being frank about my own duties (both legal and ethical), and allowing them time to grieve. I have always regarded caring for dying people and participating in their death as an honor granted me by the family.
I think there is more going on in this case than we know. Why this case became so adversarial is probably a complicated issue, and these complexities do not translate well to the evening news.
There are some directly antagonistic ethical issues in play here. Patients, and their families, are in charge of medical decision-making. But they don’t have the right to demand whatever they want. This can be as simple as requesting a test that is not medically indicated or as complicated as this case. Futile care is unethical, particularly if it causes pain to the patient. Of course in this case the patient is already dead, so one could argue that there is no harm in persisting. But there is ethical harm, I think.
I have been in the situation once or twice of requesting, on behalf of a family, transfer to another facility when we have reached an impasse regarding what is appropriate treatment. That is my obligation. But no facility I have ever dealt with would accept transfer of a dead person, which is what is being pursued here.
At any rate, nature has a way of deciding these things no matter what we do.
Dr. Christopher Johnson has practiced pediatric critical care for over 30 years and is the author of several books including Your Critically Ill Child: Life and Death Choices Parents Must Face. His website is http://www.chrisjohnsonmd.com/