Who has the say?

What do you do?

She’s in her 20’s.  She’s battled sickle cell disease all her life, with a list of hospital stays that would fill a notebook.  In fact, she even had a baby while in the ICU. That’s right, hooked up to a vent, on blood pressure medicines; they did an emergency c-section last year in the unit!  They told her family at that time, they didn’t think she’d make it out of the hospital.

But she did.  She was even able to get off the trach (breathing hole in her neck).  So when she came in this time with pain, and called her sister from the ER in a panic saying, “Tell everyone I love them, I think this is it”, no one really believed her.  She even told her sister whatever happened she wouldn’t want to wind up stuck on machines.

But she is.  This time in the hospital she had an arrhythmia and her brain had some time without the proper amount of oxygen. She not only wound up on the ventilator, this time she didn’t wake up.  All the scans and tests show severe brain damage.

We sat down with the family- a confusing mix of people.  A biological mom who gave up custody, a foster parent whom the patient verbally said she wanted making decisions, and 2 sisters who are now raising our patient’s child.  We gave them the bad news about her brain injury.  We let them know the neurologist thinks she has only a 5% chance of getting any better.  We painted the bleak picture of putting in another trach, of placing a feeding tube into her stomach and of moving her to a nursing home for people in vegetative states.

We reminded them of what she told the sister, about the premonition of dying and not wanting to be stuck on machines.  Still, the family said, proceed with all the things that will keep her stuck.

What to do.  They are making decisions, but maybe not the decisions the patient wanted them to make.  Yet, who are we to take away that hope they have, that 5% chance of her improving from the blank stare, body rigid, hooked up to machines existence that she’s currently in.

What to do?

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