"So, someone like this, who is already on the borderline of having her husband take care of her at home, with a major cerebrovascular incident, it's unlikely she'll be back...it looks like she's headed for", count them off on fingers, "trach, PEG, and SNF".
As in a tracheostomy, because she can't breathe, a PEG tube, which allows us to dump food directly into her stomach, and a SNF, or skilled nursing facility, which some used to call nursing homes.
She can blink, but can't tell her right from her left. She easily coughs with the whole-body-but-silent cough of necrotizing pneumonia on a ventilator; the sound doesn't come out, but all the lines on the ventilator go crazy. When she came in she couldn't even move; she was in a seizure that wouldn't let her move that lasted forever and a day. Status epilepticus.
She has infarct upon infarct upon infarct in her brain, three, layered, all of which could result in her waxing and waning weakness on one side; one way it is described is as an anamnestic respose, literally an 'unforgetting' that the brain engages in when put under stress. Old strokes become new again.
I keep wondering where mercy lies. The triad, the trach PEG SNF triad, an epithet, a plan, an epitath--would I want to be kept alive? Are these still people who can live meaningful lives? The same question comes up again and again for the 30-yo in an earlier post, off ventilator, on ventilator. He's strong, responsive, too. He can open his eyes sometimes, squeeze fingers, communicate. He was trached and PEGed today also.
The choice to withdraw care is somewhat like the choice to have an abortion. People who haven't stood in that circumstance can't know what it's like, and that includes me. If it were my parent, or aunt, or uncle, or spouse, I might want to keep them alive as long as humanely possible and longer. If it were me, I might be more cognitively aware than I thought. Would I feel trapped and ready to go, or would I cherish every flicker of light I could see through the skylight of the intensive care unit?
I guess we'll have to wait and see. My only advice from three weeks of seeing people vanish into their own bodies is that judgement on any decision about end of life care is not something to be taken lightly. Someday, we all might be trached, and PEGed, and SNFed.
3.06.2007
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