This past week has been a very difficult one for my family and me, and I thought I would enlist the help of all you wonderful and wise nurses out there. I'm in need of a little guidance.
Just a little background: my uncle was 57, and he had down's syndrome. He has been in group homes most of his life, and was pretty functional until about two years ago. He started to decline cognitively, and then physically. My mother moved him to a SNF closer to us in Dallas a few months ago, so that we could visit him and monitor him a little more closely, since he didn't get the best care in the small town SNF he was in. At the time of the move, he was pretty much debilitated d/t contractures he developed at the last place he was in, had multiple decubitus ulcers, had a peg tube, and was septic. The SNF we moved him notified us immediately that they were transferring him to a hospital nearby. He improved after a couple of weeks and went back to the SNF. My mother was very involved in his care, and was generally notified if anything was changing. The past couple of weeks she had not gotten a chance to visit, but got report from other relatives that he was doing well. On Thanksgiving, however, things took a turn for the worse. He was found at about 0300 by a CNA, with vomit on himself and shallow breathing. When the nurse came in, he had stopped breathing altogether and was sent by EMS to a hospital nearby. He died at 0413, and the nursing home was notified at 0423 of the death. I'm guessing he aspirated, though we will not know for certain what the COD was until the autopsy results are back.
Now, this is where it gets bad. When he was transferred to the ED, no one in my family was notified. The hospital did not receive next of kin information from the SNF when he was sent. When the hospital pronounced him, notified the SNF, and requested more information on him, someone said they would have the nurse call... no one ever did. At 0715 on Thanksgiving, my mother received a phone call from a nurse, who didn't even have the right name, to notify my mother of the death. My uncle died alone in the ED on Thanksgiving, and was sent to the morgue. When I cried and screamed and asked why no one even called to tell us he was being rushed to the ED, all she could say was "Sorry." No explanation. After we gathered my grandmother and my other uncle together to go see him, he had already gone to the ME's office for autopsy. We never even got the chance to say goodbye. My mother can't afford to have a viering and a burial, so we are doing cremation-- she still hasn't seen her brother, never got to hold his hand, and will only be able to see him through a window before he gets turned to ash. We got a call at 10 pm that same day from another nurse, who sent her condolensces, but still could not offer an explantion.
There is no explanation. There is no excuse. There is no reason on this green earth that my family should not have been notified that he stopped breathing and was en route to the ED. There's no reason the ED should not have been given next of kin info. There's no reason that the woman who notified us could not get his name straight before she called to tell us he was dead. There's no reason that she asked to put me on hold to get another line while I cried and asked for answers. There's no reason that our last chance to see and hold him was so horrible taken away from us.
Needless to say, we are furious and hurt. This was a complete miscarriage of trust in a facility that was supposed to care for my uncle. We understand that people fall ill and can die suddenly, and without warning. Obviously we are upset about the death, but more than that is the break in communication that followed. I just needed to see who I should report this to, and what actions I can take. I'm not looking for retribution, though disciplinary actions is most definitely warranted. Nothing is going to give us that time back, but I want to make sure that this doesn't happen to another family.
