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My own personal Schiavo.
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What I am about to share is probably a violation of State and Federal law (HIPAA), but it's eating me alive like a cancer.
quote:
I happen to be in the position to work with someone in Terri's condition and just so happens to be profoundly retarded. Generally speaking there are only two people who are guardians of our residents: someone in their family, or a legally appointed guardian (which tends to be a direct care staff member that is willing to take on the task).
Either way each side is kept informed of the patient's health and overall quality of life. There are layers upon layers of policy and procedure that prevents your hypothetical. In fact, the farthest you can push the right to die with the retarded is a DNR order, or to order someone off of life support systems because they are dying. Which has to go through human legal rights, a physician, the social worker, and about a few thousand other overpaid "professionals" before the final okay is given. I've been through the death of two individuals in the last year. I know the process.
And now I can add that I am now going through a Schiavo.
The resident that I spoke of above wasn't 100% like Schiavo at the time, but his capacity of functioning in any way was reduced to blinking his eyes and feeble attempts at voluntary movement of a limb. He was that way because of a severe case of hydrocephaly had gradually destroyed his brain. Unlike Mrs. Schiavo, Jon was still very much there. No imagined responses on a video tape propped up by the Culture of Life. Jon could respond to yes and no questions through an established set of eye blinks (1 = yes, 2 = no), and tried to make contact with the outside world. With physical assitance he could still blow kisses to the staff, but only once or twice a day because it was so exhausting. He would even try to talk like he used to, and still tried to mouth the names of familiar staff.
A couple months ago Jon got unusually bloated around the abdomen. A bladder scan revealed his bladder contained approximately 1,000 ml of fluid. He was catheterized and the nurse reported an extracted total of 1,100 ml of urine in the charting and other assorted paperwork required by protocol. He started bleeding, but it was expected that some bleeding would happen. You just can't cath a man without running the risk of some bleeding. I've seen the quick-cath kit for both ladies and men, and let me tell you: you've got it good gals. So there was bleeding after the cath and nobody was all that excited. And then it continued into the next day. Slightly bothersome, but we were assured that it still wasn't outside the realm of normal. The day after caused more concern.
Every time Jon urinated his body was wracked with pain. The urine wasn't really urine at all at this point. It looked like a 60/40 mixture of blood and piss. Clots. The man was screaming (as much as he could, which was a faint groan) with every void. After a brief call with the doctor on duty it was decided that it would be best to place a Foley catheter in to help make urination more easy. The catheter would also prevent blood from clotting up in his urethra and causing more hardship.
I think it was only a matter of about 48 hours before the gritty stuff started coming. We were concerned and so we brought it up with our living unit RN. She said that those were just little blood clots and we shouldn't worry. This lady has gone to nursing school, has been a nurse for at least ten years, and I would make a better nurse than she is. I have no formal training as a nurse and even I know that the gritty stuff at the bottom of the drain bag is kidney stone precipitate. Of course nobody could convince her of that because she's an RN and we are just lowly DT staff. This is a fairly regular thing between the staff and her, by the way. She is always right even though she is patently wrong and there is empirical evidence to prove so.
We finally got the bug planted in enough ears that they got a doctor to order a scan of his urinary tract, and guess who was right? Not Merriam fucking Kelle the Infector of Urinary Tracts RN, that's who. The guy had kidney stones like traffic backed up on the freeways of LA. In the urethra, in the bladder, and every other place one could think they could be.
Time goes by. Consults are done. Finally they place the idea before his parents: We can leave them be and he can be in incredible pain for a very long time, or we can operate and there's like a 99.9999999% chance he'll die due to his condition.
Parents decided to go ahead with the operation.
He had the operation eight days ago. Things went reasonably well the first couple of days. Jon is incredibly resilient and has, up until now, lived for some 12 years longer than he was supposed to. His initial life expectancy was somewhere in his twenties and he is now somewhere in his thirties. Someone said 36, but I wouldn't know without checking his record. Then at some point he thought it would be fun to get pneumonia. In both lungs.
That brings us to sometime in the last couple of days. His parents have decided to stop all treatments with the exception of his pain medication and seizure medication, and to stop his g-tube feedings.
As I have made it clear during discussions about Terri Schiavo I'm am all for a person's right to die. I feel that if you run out of options and there is no hope you shouldn't prolong someone's life just because you don't want them to die.
I was fine with the decision until we were told they wanted to bring him back to our living unit to die. Hospice is only paid for five days with our people and if they haven't died by then, oh well. You were too slow to die. so get the fuck out.
There are staff that I work with that have taken care of this man for nearly the entirety of his life. Some of us haven't worked with him that long, but we still love him. They had the nerve to even ask if we would allow him back on the living unit. As much as I respect a person's right to die I will not be party to that person's death, even if it is my job by some twisted fate. The general response by the living unit staff was that if he came back to the unit we would: resume his tube feedings even if it means losing our jobs and serving jail time, or we would all quit en masse. It was made pretty clear that if he were brought back to the unit we could not guarantee that his family's wishes would be complied with, but that the hospital downstairs would be a far more appropriate place because the staff down there are largely people that have never worked with him.
I never in my life have ever thought I would be involved in such a situation. I wouldn't wish it on anyone. I'm ashamed that I can't help my friend die in comfort because I'm so selfish that I can't bear to watch. Even if it is my job.
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