Great questions! In fact, the same questions came up when I did my muscle biopsy because they were putting me under they asked me if I had a will, trust or advanced directive. I was like "no", but it really got me thinking and I think I am going to do it. I have spoken to my mom and sister about what I want, but it would probably resolve a lot of issues should the time ever come (heaven forbid). Unlike most people, I don't want to be recessitated and I do not want to be on any machine to help me breath or otherwise. I rather just die naturally and not prolong the next step on my journey. Sounds morbid, but I am really at peace with death and am not scared. I accept it if it's in my path. I have a feeling though, that there is a long time before that day will come. ( =
Quote:
Originally Posted by AnnieB3
There's a story in the news here that simply is too much for me to handle. It cuts too close to "home." This could easily have been my Dad, for he was "cared for" at this hospital as well, having dialysis there on a weekly basis. My Dad, thankfully, was coherent, which I guess is a determining factor by these HMO "gods" as to when life should end. 
http://www.startribune.com/lifestyle...UoD3aPc:_27EQU
I have to wonder if this is yet another case of an elderly person getting misdiagnosed, as his wife says in the video. They say he has dementia. Is that instead a B12 deficiency? He had episodes of choking and you have to wonder if he has a neuromuscular disease. I have no idea what is his state of health. Maybe he is near death but I know of people who live into their 90's or past 100, with the right care. But his situation brings up some important issues for those of us with MG.
Do you guys have a health directive, which is often within a living will?
Do you have a "regular" will?
Apparently, even if you are very specific and have a proactive family member or friend, an HMO can come along and "declare" that you can't get any more care but hospice care. This hospital has gotten it "wrong" so many times in the past and not only with my care. What if I end up in an MG crisis again and can't speak? This is the place that made me wait four days for treatment (other than oxygen) during my MG crisis.
If HMO's can override a patient's wishes, what else can they do to us? Do you understand how serious this move by the HMO is? This sets the precedent that a doctor or a group of them can do whatever they want because "They said so." Very dangerous. There have been other precedents about "forcing" care, like forcing a teen to have chemotherapy. But to completely ignore the wishes of an adult patient, when it is in writing and legal? Scary.
This is a serious breach of ethics, in my opinion. And there are none more vulnerable than those of us who are sick and may not be able to speak for ourselves. This hospital's daily mantra probably is: "Save money, not patients." When those in power, absolute power in this case, abuse it, that should not be tolerated.
If you guys do not have a health directive/living will and a regular will in place, it might be a good idea to get one. I'm working on mine, which is long overdue. Though I think I may have to move to another state, or country, to get unprejudiced care.
Annie |