I've written to you in the past never imagining I would need your advice. I had surgery in August. (BTW IF you ever need abdominal type surgery run, don't walk, to the surgeon who uses the DaVinci robotic method. Fabulous! One surgeon (who fired me for asking too many questions!) was going to cut me from navel to pubis, I was to be in the hospital for 3-5 days, on pain meds for who knows how long, with six weeks' recovery time. My surgery? (same as the doctor who fired me with a little added extra fixing - a total hysterectomy and bladder fix). I was in the hospital only overnight, no pain meds necessary past day one post op, and felt as if I could go back to work the second day post op!
What happened: when the anesthesiologist came to me pre-op mere minutes prior to surgery to wheel me to the OR (he never asked if I had questions, never explained anything - noda, nothing, zip, zilch). I specifically said I wanted to be awake as long as possible and be 'put out' only when absolutely necessary. He verbally agreed. I am thrilled! When my husband had surgery 2 years ago, I noticed on his anesthesia record that anesthesia starts loooooong before surgery and I wanted to avoid not only the additional expense, but I wanted to experience all I could. I get on the table, an additional IV is started, I am asking questions as I am super curious about what is happening. The next thing I know I comment on a 'sensation' in my arm and he replies that that is the medication (did not name). I remember saying, "It's too early" and then blackness. Mind you - I was not anxious, I was not nervous, the prep was not painful, and I have endured much more embarrassing incidents so there was no medically necessary reason for me to be out or sedated.
Anyway, surgery went fine, BUT I believe I was given Versed against my wishes and in fact had it listed as an allergy on the advice of a pre-surgery nurse in order to ensure I would not get it. When I got my chart I noticed 'Midazolam' written and then crossed out. The jerk anesthesiologist didn't even bother to look at my chart or wristband for allergies before shooting me up! I have no proof that he gave it to me, however. Do you know if it is a 'controlled substance' for which a nurse or doctor has to sign for and records kept? How could I get access to the records for that day? Do I need a lawyer for that?
I got my complete hospital records. I took nurses training and was licensed for a time several years ago so I do have some medical knowledge. On the record of anesthesia page the anesthesiologist recorded that anesthesia was started a mere 5 minutes after I arrived in the OR - Propofol and an inhalant agent - which coincides with my recollection. I was soooo angry. Propofol was used and I do know it is called 'milk of amnesia' and can cause retrograde amnesia (how long a period of time does the amnesia go back, do you know?), but I was NOT told of amnesia (except for during the surgery itself), I was NOT told I would be awake for the prep only to be the entertainer of the hour. Plus the record states anesthesia started 5 minutes after my arrival - with the Propofol and an inhalant. I should have been out, right? Straight Propofol in lower dose is used for conscious sedation, tho, isn't it?
So....my case is the opposite of yours. I consented to general anesthesia and presumably got conscious sedation first, then GA. I did NOT consent to conscious sedation. I did NOT consent to amnesia. In fact, that word was NOT uttered or written anywhere by anyone.
At my post op appointment with my surgeon I commented on the fact that I REALLY wanted to be awake for all the prep and was SO angry, disappointed, absolutely livid that I was not. She replied, "Oh, you were awake. In fact, you were quite entertaining"!!! WHAT?! I believe she immediately realized she had let the proverbial cat out of the bag and quickly made an excuse to leave the room thinking that was the end of it. It took months to get another appointment to ask questions. During which time, I am sure, the legal department was consulted. Nobody in her office will even talk with me without there being two of them - even to tell me an appointment was cancelled!!
At my most recent appointment - to talk -just last week, I reminded her of what she'd said and asked point blank what it was I had done and/or said 'under the influence' that was so entertaining. I understand that Propofol is much like truth serum and that it releases inhibitions allowing one to say and do things they would not normally do. I am so upset to know I was out of control with no memory of what I did/said. She claims she can't remember. So, trying to jog her memory or get her to say what I did do because what I suggested was so far off the mark, I asked: Did I try to seduce the anesthesiologist? Did I try to seduce her? Did I entertain everyone with singing and striptease? Did I threaten to sue? What??? She said No. No. No. No. She did say she remembers talking with me as the ekg leads were being placed, she remembers the circulating nurse changing out and forgetting to hit the start button for my video (GRRRRRR), she remembers specifics about the following day, BUT she expects me to believe she cannot remember what I did that was so entertaining?! Information she volunteered! So I should believe what she said in January, but not believe her off the cuff remark in October?!
I did meet briefly with the anesthesiologist (I was shocked he would see me!) and told him how upset I was. His response? "Well you were awake when you went into the operating room, weren't you?! As if that consitutes 'until absolutely necessary'! I followed up with a letter detailing how angry I am, asking for an explanation and asking for answers to questions on what was used, why it was used, my reaction to same, etc. Not surprisingly I have not received an answer.
In the letter I also asked him to write a letter to his billing department as well as that of the hospital as I did not need nor want and in fact asked not to have the 43 minutes of anesthesia prior to surgery and that I was not going to pay for it. I have not received further billing from him which tells me he knows he did me wrong and, I believe, they are fearful of a lawsuit and are hoping this tiny concession will sidetrack me. NOT.
I have talked with and written to the 'patient advocate' - what a joke! When this is all done, I will most definitely write to not only the 'patient advocate', but her supervisors and/or superiors to tell them exactly what I think. Patient = person who was or is being treated. Advocate = supporter, defender; to speak, plead, or argue in favor of. The only person or entity they advocate for is the hospital, clinic, staff, and/or doctor! They do NOT call, they do NOT answer simple questions, they deflect, obfuscate, delay, tell half truths, out right lie. I was made to feel it was all my fault, that I was the only one who complained, they were shocked I had complained about so and so as they were one of their best, I was 'whacked' for even asking the questions I asked (many were not accusatory), I simply wanted to know what specific things were that were on the bill. When I ask questions I get attitude from everyone from the receptionist to the 'patient advocate' to the nurse to the doctor. Granted I am so upset I'm sure my tone of voice is less than pleasant, but I do try. I have concluded that the job of the patient advocate is to listen, make sympathetic sounds and then write a letter saying how sorry they all are for the perception of a problem, but that, of course, they find no fault whatsoever in anything that was done in their facility or by any of their exemplary employees.
The patient advocate did write back to say the anesthesiologist DID show me all the equipment in the operating room and DID answer all my questions and DID warn me he was putting me out, which if accurate, further reinforces what my surgeon said about me being awake. I consider that to be even worse behavior on their part - to act and talk with me as though everything is normal and I will remember, all the while knowing I am under the influence of an amnesia-inducing drug. Unconscionable!!! It must be quite entertaining.
It absolutely astounds me the callous cavalier dismissive way we patients are treated. I honestly thought I had asked all the pertinent questions and made all the right requests to ensure a good mental/emotional outcome for my surgery. Boy, was I ever wrong! In the letter I sent my surgeon after my last appointment I said, 'We are expected to endure all manner of procedures in the office that are embarrassing, uncomfortable and downright painful (the excuse for sedation prior to surgery) without benefit of medication, but once they have that IV in you in the hospital anything goes. Do they think we are all such wusses we cannot handle seeing the big bad operating room? Do they honestly believe none of us are curious about the goings on in the operating room? Why do they not at the very least ASK us to what extent we want to be awake and aware? We are NOT all the same. One size does NOT fit all. If 'most' are happy with this treatment (as they so eagerly point out), doesn't that mean there are some who are not? I do understand there are many who do not care and do not want to know anything, but for those of us who do........ I cannot for the life of me understand why we are not consulted. Actually, I do - it is just so much easier and more profitable to do as they please. AND if they were upfront and honest about the amnesia and being out of control how many would consent??!! It definitely is all about the staff rather than the patient - the paying customer.
My surgeon actually told me that in all her 20 years as a surgeon I was the first that had a problem with how I was treated and who wanted to know more than the mere crumbs they throw at you and complained when I was totally ignored. I replied that I sincerely doubt I was the only one to feel the way I do - I was just the only one to let her know! I'm sure many share my husband's opinion - that being "Why bother? It's over and done with and me saying something now won't change a thing." To his credit he is amazingly supportive of me tho he does not share my thoughts and concerns.
IF there ever is a next time I will NOT allow an IV to be started until and unless I talk to the anesthesiologist who will be administering my anesthesia and (s)he details what drugs will be used, when they will be used, for what purpose, and what my reaction will be. I know they cannot say with certainty what will be used as situations can arise necessitating other drugs, but I will, at that time, get in writing and have it signed by all involved what will not be allowed. PLUS what I do and do not expect to happen in the operating room.
Any advice on how to proceed? I'm sure I have no grounds for a lawsuit, but am going to continue to follow up with them all. I really wish I could get things changed, but being labeled a crazy disgruntled patient I am sure not to be taken seriously.
Thanks for letting me vent. I know you understand.