A doctor just told us that my dad’s doctors think he’s in a permanent vegetative state and will never come out of the coma. He has been in a coma since June 1, had GBS since May 7, and ADEM diagnosis came along maybe mid-June based on MRI. Since then he’s had IVIG, no change, and now they just started him on ritalin and on low dose prednisone, as they are reluctant to try anything strong due to a major GI bleed he had in July. He does open eyes and respond to pain and moves hands and head very slightly, sometimes seemingly in response to voices, turn head to follow voice sometimes. They are pushing us to put him in a skilled nursing facility where they say he will likely not improve and eventually succumb to an infection.
We know he would not want us to persist in keeping him alive with such a prognosis, where we sure. But we’ve heard so many accounts of ppl being told this and surviving. And two weeks ago the neurologist on rotation said that if this were his father, he would be continuing to be hopeful and seek treatment.
What would you do at this point? We are overwhelmed and have no idea. We don’t want to give up on him if there’s hope, and we don’t want to persist if we are causing suffering.