Life and Death: Thoughts on Jahi McMath
Posted: January 8, 2014 Filed under: disability, Down syndrome, The System | Tags: brain death, disability, Down syndrome, End-of-Life, medical intervention, race 15 CommentsIf 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.
Kimchi Latkes 
I am weeping reading these reports and your blog, Jisun. Thank you for bringing them to my attention. I do not know how people cope without advocates when they are incapacitated; it’s tiring to think of how hard one has to fight the power sometimes.
I’ve really been chewing on this for a while, there’s so much about these cases that bother me. And I have to say, a couple years ago I think I would have questioned the events so much. I never considered the complicated biases at play. :(
Thank you for writing about this case. I was just talking about it yesterday with a friend whose adult daughter is medically dependent after a stroke. Had the neurosurgeon who performed emergency life-saving surgery on her known that she was already developmentally delayed from a chromosomal disorder, it’s fairly clear he would not have gone to as much trouble. There is a disturbing arrogance from hospital specialists sometimes and I think it needs to be countered by a movement demanding more respect for patients and their families. Most disturbing of all is the fact that many who are in the business of making these ethical decisions base them on their own prejudices of who has a worthwhile “quality of life.” My friend reports that the hardest thing for her to deal with is the knowledge that so many people write off her daughter as a “vegetable” and would want to euthanize her. She’s responsive, makes eye contact and has some limited communication ability… but that’s just not enough for some people to offer basic human kindness.
Basic human kindness, exactly. It feels so lacking in the McMath story, irrespective of whether the family is right or wrong. Thank you for your comment. Despite the high traffic of this post, people have been eerily silent on this. I’m never one to shy away from a good debate, but I wonder if people just don’t think this is an important issue? It saddens me.
I have to go throw up.
Yes, it is upsetting isn’t it? I’ve had my eyes newly opened to what happens in this country over end-of-life disputes. It is deeply perturbing to me.
Urrgh. I can’t imagine having to question whether any medical treatment Wade might receive has been “discounted” based on his diagnosis.
This really opened my eyes to the issue and everything you said made perfect sense – which is disgusting. I understand that doctors make mistakes, and they save a whole lot more lives than they ruin, but how horrible to think their own personal biases might be precisely what is leading to substandard care of the disabled, etc. This is a shame. Like the other comment says, I have to throw up too. :(
I’m still upset about this case but I’m heartened that someone outside my usual circles finds it upsetting too. I think there’s room for improvement when it comes to unbiased care, I wish the medical community seemed more open to it…
Yes, well you are doing great work in informing others on the issue. I look forward to reading more on your blog. All the best.
When Lyra has had her eye surgeries (four surgeries in three events), the recovery room was always filled with kids who’d had tonsils and/or adenoids removed. Their pain was heart-achingly clear as they cried hoarsely. If you have to have your son’s removed, beware that it is far from painless and, as you now know, not risk-free.
Maybe consider going to a children’s hospital, even in another state, that has a Down syndrome clinic and (presumably) greater awareness.
I know a couple kids who have had this surgery (didn’t have T21), the recovery was rough for both. I do know that after watching what happened to this family, we certainly will never be comfortable with Oakland Children’s, despite its good reputation. :(
I’ve struggled to understand this case and its implications as well. There are just too many details that are unknown at this point, though. The hospital couldn’t release information other than what the family allowed and their comments, while very harsh sounding with the matter-of-fact diagnosis, were all they could comment on due to the privacy restrictions. I have read the articles from Jahi’s family and they are heartbreaking. I still feel like we’ve only heard one side to the story and it’s the side that is heartbroken and seeking answers (or, perhaps blame?) over the unexpected loss of their daughter.
Either way, we know the reality is that personal biases come into play in a hundred tiny ways in decisions about care every day. There have been studies that have shown that doctors treat obese patients differently than “normal” weight patients. http://well.blogs.nytimes.com/2013/04/29/overweight-patients-face-bias/?_r=0
I don’t doubt that the same happens with patients because of their skin color, age, disability, sex, orientation, language/heritage, wealth (or lack thereof), addiction, and other factors. We can pretty easily assume that discrimination in the real world carries into the operating room too and that’s a sad and difficult reality to mitigate.
I’ve struggled to understand this case and its implications as well. There are just too many details that are unknown at this point, though. The hospital couldn’t release information other than what the family allowed and their comments, while very harsh sounding with the matter-of-fact diagnosis, were all they could comment on due to the privacy restrictions. I have read the articles from Jahi’s family and they are heartbreaking. I still feel like we’ve only heard one side to the story and it’s the side that is heartbroken and seeking answers (or, perhaps blame?) over the unexpected loss of their daughter.
Either way, we know the reality is that personal biases come into play in a hundred tiny ways in decisions about care every day. There have been studies that have shown that doctors treat obese patients differently than “normal” weight patients. http://well.blogs.nytimes.com/2013/04/29/overweight-patients-face-bias/?_r=0
I don’t doubt that the same happens with patients because of their skin color, age, disability, sex, orientation, language/heritage, wealth (or lack thereof), addiction, and other factors. We can pretty easily assume that discrimination in the real world carries into the operating room too and that’s a sad and difficult reality to mitigate.
Thanks for that link. Yes, i can definitely see how one’s weight would unfairly be part of the calculation. How awful.
I dunno, I think there seems to be legitimate reason to look for blame. But you’re right, how could we know. I’m still so perplexed that people seem to cruel hearted to want to jump all over this family and declare that they are without any right to their feelings and doubts (not you, of course).
I think mitigating all those biases can only begin to happen if doctors and medical professionals are more willing to admit that they happen.