My special needs sister, Marylynn, 61 years old, choked on January 30 on a piece of steak. She went into cardiac arrest and was revived three times. I was told in the course of those three times it was a total of 20 minutes of her not having oxygen to her brain. I do not have any reports to confirm this.

She was then taken to Lakeland Regional Hospital in Florida and was put in the ICU on a breathing machine and placed into a cold therapy coma. They claimed that she was having seizures, so they kept her heavily sedated. After 72 hours, it was determined, by the staff at the hospital, that she was severely brain damaged and did not have "quality of life". We were talked into discussing removing the breathing tube to let her die. When we decided to do that, all of a sudden, an Organ Donation Team was sent to our room to discuss that my sister was a candidate for organ donation. My sister never expressed wanting to be an organ donor, so her daughter spoke for her when asked if we would consider it. After we agreed to do this, (which I highly regret), they kept her on the breathing machine for about 24 to 30 more hours to be sure she got antibiotics and a blood transfusion, and everything they could possibly do, so that the recipients would be able to have her liver and her kidneys. (I actually feel bad for the people they found to match.)

I was told that if she did not die within an hour that they would not be able to use her organs. I asked many questions because I did not want her to go into palliative care. I knew then that the next step would be dehydration and starvation. The doctor in the ICU told me that would not happen because "euthanasia was illegal in Florida". He explained that palliative care was there to help her recover, if need be, and I believed him.

My sister didn't die within an hour after being brought into the OR (operating room) and having been removed from the breathing machine. She actually started breathing on her own, 18 breaths per minute, so of course they sent her to palliative care. Immediately I was pushing for hydration, but they kept saying that she would "aspirate". Please tell me how one can aspirate with an IV fluid?

I kept pushing for hydration, because my sister's primary care doctor told me that I could fire the palliative team and get another if they didn't listen to my requests. It was then I discovered that my proxy was taken away from me. My youngest brother, who didn't want her hydrated, convinced my niece to take proxy away from me. Then, proxy was given to my niece who did not want her hydrated because she believed everything that the palliative team was saying as well.

From Jan 30- Feb 9 my sister had no nutrition. From Feb 3-Feb 9 no hydration, just morphine and medicine to keep her in a sedative state (because of the seizures). Her oxygen had dropped down to 80 and they would not give her oxygen. My worst nightmare came true!! Everything I was promised by the ICU doctor would not happen! The conversation I had in the ICU with her doctor was that my sister was not going to be another Terri Schiavo, yet? This is exactly what happened.

Palliative care pitted my family against me and convinced them that my recommendations were harmful. Now my family thinks that I am cruel and uncaring. I am not allowed to look at the medical records. According to my niece, she said, I caused enough harm. The only harm that I caused was wanting my sister to die with dignity "if" it was her time to die. Her organs were perfectly fine and ready to be given away on Saturday and by the next Friday they said that her organs had shut down.

When I was growing up we called her disability "retarded", yet society did not have the term "autism". She could read, write, express herself well, but decision making was absolutely underdeveloped. She was born that way. She had 2 children that she didn't raise when a couple took advantage of her because they couldn't have kids. They raised the kids with my sister in and out of their life.

Marylynn couldn't manage money, she lived in a trailer in Florida with many cats in an unsuitable environment, yet she was happy to be independent and feared institutions. This is why her daughter believed the hospital and followed their protocol because they said she'd be in a nursing home on a breathing tube for the rest of her life, and her daughter knew her mom was so scared of that and would be horrified if she woke up and was aware.

Marylynn was one of seven children. She knew she was not "normal". It hurt her deeply because people called her stupid and made fun of her many times in her life. The system failed her her entire life and the worst was at the end of her life. I couldn't be by her side at the end. I live in another state and I was assured my oldest brother would be right there with her, with me making the best decisions, but that was not as promised either. When I did fly down while she was in ICU, I held her hand, talked to her, prayed over her, and stayed days with her. I advocated for her and fought for her right to life until the very end. She will be forever missed.

Ludlow, MA