I am 38 and my twin sister suffered an anoxic brain injury 18 months ago. We don't know the exact cause of the ABI, other than it is related to a domestic violence attack which led to a heart attack and the police/911 was not called for several hours. It took first responders 45 minutes to resuscitate her at the scene, and she coded in the ICU after her tracheostomy. All of this happened before we were notified of the incident by her "husband," 10-days after the fact who refused to let her go at the advice of the medical team.
My mom and I are now her legal co-guardians, and her husband is out of the picture. My sister is completely immobile, and her arms/hands/legs and feet are permanently Contractured. She is in a lot of pain most of the time. She has no long or short term memory, although she does have moments where she will say your name and a second later she has no idea what she was saying.
She cannot physically eat, as her brain connection is gone - She doesn't understand what food is or why she needs to do it. She has had a peg tube for 14 months. She no longer receives ST/OT/PT as she has not progressed, and actually continues to regress. Medicare won't continue to pay.
She is a mother to 2 children, but she does not remember them. Sometimes (earlier after she woke up from the initial coma) she speaks about the DV, she says she watched herself die and wants to die, asks us to kill her, etc.
Over the last 3 months she has significantly changed - She barely speaks, moves, sleeps constantly.
She is now dealing with bladder and kidney issues.
My question is... at what point do you consider palliative care? When do you decide to remove the feeding tube?
She has NO quality of life. Whatsoever. But we didn't get to make the decision when it was critical after the incident, and now we are the ones caring for her. It feels wrong to stop her feeding and "let her die" after 1.5 years, but we don't want her to be in pain. She's in this weird "in-between" - I see a lot of ABI survivors who are in a coma, or survivors who recover physically with mental/emotional defects - My sister is like a vegetable physically, but is awake and minimally-moderately conscience.
Looking for advice from families or medical/care team who have seen this situation?
I can't imagine her living for another 20-30 years in a nursing home on a feeding tube. She can't eat or drink, can't watch TV (doesn't understand it). She just lays in bed.
May The Lord lead, guide and direct you in this difficult time.
My youngest son, aged 23, was assaulted and sustained a brain injury. He never regain consciousness although we had signs that he understood some things.
After they had done surgery to relieve the pressure on his brain, we had "the talk" with a doctor and were told that if he survived he would never be the same person again and would be immobile etc. and need much care. He was on a respirator and we, following their general recommendation, chose to remove that support. If he had survived we were prepared to care for him as long and as much as needed. He passed very quietly after the respirator was removed. It was some comfort in that he would have hated being bedbound or in a wheel chair as he was an active outdoor guy. Nonetheless it was a devastating loss.
It was not quite the same situation as you are in. My heart goes out to you. My God give you peace in what ever decision you make.
Then you turn around and tell us that she told you she watched herself die, and that she wishes to die.
Sorry, THAT isn't a vegetable. That is called communication.
I doubt that doctors would condone removing a feeding tube once that has been placed on a young woman with young children.
You say nothing of MRI or brain scans. But the fact your sister is VERBALLY communicating with you means that there is still a lot of brain activity there.
I believe that no one on a Forum should advise you now. This is between your sister, her family, and the MDs on the care team. They are the ones who best know the condition of your sister and her status.
This is purely a case needing the full consult of all doctors now treating your sister. We aren't medical doctors, nor do we have any real idea of what hopes your sister's doctors might have or improvement no or in the future. Some brain injuries are permanent, and some are not.
This is a great tragedy, is horrible, and I am so very sorry for your sister and your entire family.
It sounds like you’re not familiar with the stages of consciousness and quality of life being a decision making factor for severe ABI patients. If someone can talk, but cannot eat, drink, speak (aphasia), walk, is paralyzed, incontinent and in constant pain, is that not a consideration for taking her off of life support? Would you want to live that way?
Many would argue her talking about and asking to die is an indication to respect her wishes.
You should highly consider your responses. I hope you don’t chat much on this forum. You don’t get to talk to me in THAT way, and talk down as if you know anything about the situation and then at the end say I’m so sorry for your tragedy. People are here for best practices and personal experiences. I did not ask for your opinion I asked for experiences from somebody who has gone through the same situation.
Shame on you!