Since this is the last edition of TTPMOT for 2013, and I didn't write one last week because I was busy with family and gratitude and holiday stuff, this one will be extra ranty. I hope you are wearing your big kid undies today.
Off we go.
Keeping People Alive When They Are Dead
There are two major stories in the news right now that involve patients being kept alive through the use of machines when they are very much dead. There are two ways to declare death, either through physical death of the body, cessation of the autonomic nervous system which regulates breathing, heart rate and so on or through the death of the brain.
The trouble is that it's usually pretty easy to tell when a person stops breathing, when their heart stops beating, but it's difficult to tell when a person experiences brain death. Brain death diagnoses are exceedingly rare and really only exist through the wonder of modern medicine. The patient is being kept alive through artificial means, which can include ventilators, intravenous fluids, enteral feeding tubes, medications and demands 24 hour care.
There is a difference between a comatose patient and one declared brain dead. For a brain death declaration to occur, the standard requires two independent medical doctors to perform thorough exams on the patient, testing for reflexes as well as reading brain activity tests. Comatose patients (and other patients with suppressed neurological function) have a chance of recovery, but someone who is brain dead has no chance.
Sorry for the long winded explanation, but it's important to this rant. I spent years studying bioethics and this is the kind of stuff that makes me crazy.
Anyhow, there are two people being kept alive, one against her wishes, in hospitals today. The first is Malise Munoz. 14 weeks pregnant, she suffered a pulmonary embolism at home in the middle of the night. She was rushed to the hospital, but doctors were not able to save her life. She was declared brain dead because of lack of oxygen. What doctors were able to do, though, is to keep her body alive, and therein lies the rub.
She was pregnant. She is pregnant. Even though she is legally dead, her body is being kept alive to incubate a baby that was barely past the first trimester at the time of her death. A baby that no hospital, no doctor would have ever attempted to save. The doctors aren't sure whether the baby suffered damage from oxygen deprivation, and it is too early to tell. Her husband wants her disconnected from life support. They had discussed life and death issues, but never wrote anything down formally. The state of Texas forbids removal of life support from a pregnant patient.
The doctors have said they will do more testing after the fetus reaches 24 weeks, but under Texas law that's past the acceptable time to perform an abortion. Letting her die would mean letting the baby die too. Her wishes and the wishes of her family have been deemed irrelevant. In the meantime, she is being kept alive to keep a baby alive that might be just as dead as she is.
As if that case isn't bad enough, there is a legal battle raging over the body of Jahi McMath, a 13 year old girl who died after a routine tonsillectomy in Northern California. Her body is still being kept alive, but she has been declared brain dead both by the doctors and the courts. Her family refuses to let her go, and they are in the process of trying to find a nursing home that will take her in.
The problem is that in order to transfer her, she needs a tracheotomy and a feeding tube put in permanently, and the hospital refuses to do it, saying that it goes against ethics to perform unnecessary procedures on the deceased. Even if the family can find a way to get the procedures performed, they have to get her body transferred which will require involvement of the coroner since she has legally been declared dead. Then you have to ask the question of who will pay to keep a dead girl alive.
I get it. I do. It's excruciating to see your baby lying in a bed. Hope is crippling when there is none. I can't imagine the heartbreak of a family being told that their child is dead. I've seen a few families unwilling to accept the conditions of their children in cases like this personally, and the outcome is always awful. Jahi isn't coming back, and keeping her hooked up to machines won't help her. The family seems to have grounds for a negligence suit because of the details of the case, and would have grounds as well for a wrongful death suit...but they have to let her go first.
Yesterday, the judge extended the order to prohibit the hospital from disconnecting life support until January 7th.
Privilege, Privilege Everywhere
From Justine Sacco and her tweet about how she won't get AIDS because she is white, to all the Duck Dynasty fans telling the gays and minorities to get over it (and WHY is everyone ignoring the fact that he thinks 15 is the best age to marry girls???), even to Ani DeFranco and the plantation concert that wasn't...it's becoming clearer and clearer in my head just how clueless people are about the power of privilege.
White privilege, male privilege, financial privilege, birth privilege, whatever privilege. It all gives whoever enjoys it (or them) some tacit benefits in our society. I don't labor under any delusion that the playing field can ever be completely leveled, but I also think it would do most people some good to recognize the fact that these privileges exist.
This is a subject that has been on my mind a lot lately, but I haven't really been able to formulate a coherent post about it. I'm waiting for my more articulate friends to go there. Then I read an article yesterday that was supposed to be about a woman fighting cancer and all the wonderful support she received, and I read it as something else entirely. It reeked of privilege.
If you so choose, you can read the article here.
As someone who has been to Cancer-ville, it stung. It stung a lot. It stung because what she describes as love in many instances isn't love at all, it's position, it's access, it's knowing the right people, it's privilege, it's wealth, it's luck.
It's as if to say that those who don't get their PET scans bumped fail to do so because they aren't loved enough. Those who die do so because they aren't loved enough. Those who get diagnosed and into treatment after long delays must then wait because they aren't loved enough. She was loved enough that she didn't have to.
I don't in any way intend to diminish the awfulness of her diagnosis, of her struggle. I don't fault her in the least for exploiting her access to save her own life. Where my issue lies is in the false way she presents it all. The fact that she is wholly oblivious to the real reasons she was treated the way she was.
My father wasn't diagnosed for months after he sought help. He died. It wasn't because he wasn't loved enough. It's not about love. Not at all.
It's been almost 28 years, but it's still too soon. It will always be too soon.
Beyonce, Beyonce, Beyonce....really?
She included audio recordings from the Challenger explosion in the song XO, which is about a troubled relationship.
No, I'm not kidding.
Why would anyone think this is okay? Actual real people died in this tragedy. It's the one that sticks in my memory the most from my own childhood. Their families weren't consulted before the song was released, and Beyonce's reps aren't returning phone calls.
You weren't the worst year, but you had some spectacular train wreck moments. You were far from the best. You were supposed to be awesome, you were supposed to be this fabulous new beginning and you failed to live up to my expectations.
You took my mom. You scared the crap out of me. You made me ugly cry way too many times. You locked me in a perfectly good bathroom in a perfectly good grocery store. You broke my heart a few times. You stomped on it and squished it between your toes at least twice.
Don't let the door hit ya.
See y'all on the flip side.
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