Debating another brain death test for Jahi McMath

[starfish]

3 hours ago, Cleopatra7 said:

This post from Skepchick sums up what I was trying to say upthread in a better manner:

http://skepchick.org/2018/03/racist-reasons-tiffany-haddish-drinks-turpentine/

“Even once slavery was abolished, black people in the United States had no reason to use or trust established doctors. You’ve probably heard of the Tuskeegee Experiment, in which hundreds of black men with syphilis were purposely left untreated for 40 years so that doctors could study the progression of the disease. The only reason it ended was because journalists found out and exposed it. That’s just the biggest, most well-known example, but Harriet A. Washington’s book Medical Apartheiddetails countless other examples from US history, including the still-pervasive myth that black people feel less pain than white people or that they need a stronger dose of x-rays. She even points out that some of our historical medical heroes have racist underpinnings, as with James Marion Sims, who pioneered techniques to help heal women after they gave birth. He tested those techniques first on slaves, operating on helpless black women without even giving them anesthetic.”

“It’s this horrific legacy of medical cruelty that has left many black people, particularly those who are poor and under-educated, to foster an entirely justifiable distrust of doctors, scientists, and the government.”

Given this background and what appears to be gross mismanagement of Jahi’s surgical aftercare, I can’t blame her mother to some extent for not trusting the doctors who were telling her her daughter was dead. At the same time, I do believe that Jahi is dead; even if her body continues to develop physically in some ways, she’s never going to be “normal” in any sense of the world because whatever made Jahi Jahi is long gone. I think one day this case will be a teaching opportunity in medical schools about how not to treat and communicate with the families of minority patients, just like the case of Lia Lee, a Hmong girl with severe epilepsy who went into a coma because of cultural differences between how the Hmong and American cultures viewed epilepsy:

https://en.m.wikipedia.org/wiki/The_Spirit_Catches_You_and_You_Fall_Down

I've been thinking about this book all week after reading the previous posts. I'm glad you mentioned it. I saw the author speak at the Mayborn Non-Fiction Literary conference a few years ago and it's a compelling and instructive narrative about culture and medicine. I recommend the book highly. 

 I will add that we don't know the hospital's side of Jahi's case though. There are always two sides. and I'd like to hear theirs. 

Having said that, I continue to think enough is enough. 

[melon]

Literally Bananas, I stayed with my son ,except at shift change,and also if I got too sleepy,no one was allowed to sleep there.His situation was a little different from Jahi's. I saw his nurses clean his mouth and a portion of his vent,every hour,just about,I assume because of bacteria...but he nearly rose out of his bed,and his blood pressure skyrocketed,his could no longer control his body temperature,or his blood sugar,they started giving him insulin..he wasn't a diabetic,before.They had given saline,at first,but that was depleting him,they had to do something else.On the fifth day,they brought in a machine for a brain scan,I was there,I saw,and it was blank.I knew he was brain-dead.We agreed to go forward with the organ donation.Mr.Melon,who had been in the accident,he had been driving,got so upset he had to go the ER..he has had a heart attack.We stayed all night in the ER.I got a call from one of my son's doctors...he said he needed to talk to me about my son.I was confused,he then told me that during the waiting period before they could proceed with the organ ,donation,my son began to over-breathe on  his vent,and moved his legs.They tried him off the vent,but within 15 minutes,he needed it ,again.But,by the law in my state,because he had moved  his legs and was over-breatheing his vent,they could not proceed with the donation,it's illegal,considered assault.The next day one of his respiratory care nurses? said she was having to give him more and more oxygen.We made the arrangement  to have him removed from his vent,and they honored my request to allow me to be with him,I didn't want him to die alone.They made an exception for us.Once,he was declared dead,and they waited 5 mintutes,they had to prep him for surgery,to harvest the donated organs.

[PennySycamore]

@melon, my heart breaks for you  and your family.  No one should have to go through the death of a child.   

[LiterallyBananas]

@melon you endured what no parent should have to go through. Your resilience shows through your writing about the experience, and I have so much respect for that.

The decision to withdraw care is so, so difficult, and I think some don't understand that it's ultimately done out of love. You obviously loved your son very much and wanted what was best for him, despite the horrific situation. Thank you for sharing your story.

Feel free to not answer as I know it's a personal question, but do you find comfort in knowing he was a donor? Did it help the grieving process? 

One of the units I work with has an exceptionally high rate of donation because of the quality of the organ procurement staff. They're exceptionally kind and empathetic and become a significant source of support to families, regardless of whether the patient becomes a candidate.

But it still seems like donation is a rarity and I have yet to witness it, which is why I asked about your feelings. From what I've been told, with staff it's an exciting moment amidst terrible loss. I think it's incredible that your son was able to donate, and I hope it somehow benefited you. (My apologies if it sounds like I'm minimizing the tragedy of the situation, as that's not my intention at all.)

[melon]

Yes,it does give me comfort that he was a donor,because he helped three people and because parts of him,are still here.

The people from LifeTouch (organ donation) were great.They were very kind and empathetic to us.

[melon]

Thank you <PennySycamore and LiterallyBananas.