Life and Death: Thoughts on Jahi McMathPosted: January 8, 2014
If my son, who has 47 chromosomes, were to have a life threatening emergency in a hospital, what would happen? Would his fate be the same as every other child in the same situation?
In Oakland, California (where we live) at Oakland Children’s Hospital (where we take LP for most of his medical care), a little girl underwent surgery to help with her sleep apnea. Even though she seemed fine after waking up, soon afterwards she went into cardiac arrest after starting to bleed. The hospital declared her brain dead. To the hospital, the question wasn’t whether to not take that girl off life support, but when. Her family disagreed, and they’ve been in the news ever since.
I’ve been sad and occasionally horrified with the public commentary that has swirled around this family. There are implications that they are too ignorant to know what being brain death means, too religious to understand logic. Too selfish to do what the hospital insisted was right.
Then I read this article, which lead me to this article. (Yes, go on, click on the links please. Just come back, ok?) These articles really outline the very problematic way in which most have analyzed this situation, as well as its troubling racial backdrop.
If my child had gone into a hospital for a fairly commonplace surgery, suffered complications, and I’d been told afterwards that my baby was brain dead and would never wake up, I sure as hell would have some questions. I don’t know, I might even raise a fuss about the fact that I’d been calling for help while my child bled, feeling that something was wrong, yet getting no help until it was too late. I might need more than a couple days to digest the events. And yes, my views on faith and God might inform my choices, and I don’t think there is anything wrong with that anymore than it is for someone to make choices without belief in a god. Even after time, I might simply disagree with the hospital’s opinions. Brain death is a diagnosis, let’s not forget. There is room for disagreement.
Why was the hospital so intent on forcing this family to see things on the hospital’s terms, and on the hospital’s timeline? The situation was not at the point I’d think it was appropriate to legally compel the family to do anything. And let’s not forget that McMath suffered the bleeding and cardiac arrest while under the hospital’s care. Where are the ethics there? Where is the compassion? What kind of doctor tries to strong-arm a family into accepting a diagnosis?
I don’t know whether or not Jahi McMath is truly brain dead in the way that the hospital insists, or is something else in a way that the family’s current doctor insists. I know that if I believed my daughter was responding to me, I’d fight anyone who told me otherwise, and that would be a normal reaction. I think that talk of medical costs, ethics, and supposed corpses was entirely too early and robbed that family of something that can’t be quantified, during what is probably the hardest time of their lives. I hope that the McMath family finds strength, no matter what lies ahead of them.
Last year Jack Adcock, a little boy with Down syndrome, died because a doctor mistakenly thought the boy had a “do not resuscitate” (DNR) order. In fact, a later inquest has determined that his heart attack itself could have been prevented but for the substandard care he got leading up to the medical emergency. Frankly, these two stories feel very similar except that Adcock didn’t end up on a ventilator.
When I think about Adcock and McMath’s cases, I can’t help but wonder what kind of unconscious calculations went into their care. How much did disability, skin color, class, or education matter? One can’t dispute that studies show that these do impact health care accessibility and outcomes on the whole.
LP has sleep apnea. There is a good chance that we will consider having his tonsils and adenoids out in the next couple of years. So given that I might consider sending my son to the same hospital, for the same procedure as McMath had, I can’t help but wonder. How quickly would they come running if I called for help? How hard would they try to save him if something went wrong? If I resisted the hospital’s opinion of brain death, would I be treated with respect, or shoved out the door? Would I be called delusional, irrational, and selfish?
Some implications are not new to me, but I’m feeling them quite keenly. Financial considerations seem to trump human decency. Not everyone gets equal respect. Some life seems to slip through our hands a little faster, a little easier. Some life gets left in neglect. Some life gets pushed out the door.