his article stems from a new collaborative effort between the Anesthesia Awareness Campaign and ASA with ASA Immediate Past President Orin F. Guidry, M.D., serving as the main contact person. Our goal is the prevention of, public and medical community education about, and treatment of anesthesia awareness. I am grateful for Dr. Guidry’s establishment of a long-standing goal of the Anesthesia Awareness Campaign. In our first meeting, Dr. Guidry said, “We can both agree that one case of awareness is one too many.” His second statement was, “We may, however, go about reaching our goal in different ways.” These wise and compassionate statements made it clear that we were on our way to a positive collaboration to benefit patients.

I’ve heard the stories from the mouths of well over 2,700 real patients who say they have suffered awareness. I hope each of you will search your hearts and find some way to support the goal of eliminating anesthesia awareness — a problem whose time for attention has surely come!

Patient Accounts
I wrote to selected patients in my database, asking them what they would like the members of ASA to know. These letters have been left unedited to show that awareness may be happening to all types of people. There are thousands of such accounts, and I continue to hear from awareness sufferers on an almost-daily basis.

“I would like someone to tell me why I awoke on a respirator from a simple cleaning of the shoulder bursa. I was awake in my mind but totally paralyzed for one agonizingly/horrific hour, feeling as though I was not getting enough oxygen. I could hear people around me, but there was no reassurance or explanation as to why I was in this ‘state.’ Occasionally, someone asked if I could squeeze their hand. I was terrified — for a time I believed I was brain damaged. When finally able to communicate (some), I was told I had a “difficult time” coming out of the anesthetic. I have had at least 25 anesthetics in my life — and never had such an experience.

“In speaking with people (professional and lay) about this I get a very quizzical look. There are some people with whom I would not share this experience — they would not believe it. One cannot understand this until one has the experience. Has a study ever been done where an anesthesiologist actually has the experience?

“A day or so later I asked to speak to the anesthesiologist who profusely apologized saying it should never have happened and that I was on the ‘wrong side of the bell curve.’ That is an unacceptable explanation. The following are the areas in which I am having difficulty: sleeping, nightmares, concentrating, easily startled, noises, generalized anxiety, fearful of another anesthetic. No one should ever have to go through such an ordeal.

“There is a NOT so silent epidemic out there; listen to what people are telling you. There is technology, why isn’t it used? Are you able to explain why there is resistance to using brain activity monitors? From what little I know, it does not appear to be overly complicated. What would you do without a blood pressure reading? I filed a complaint with JCAHO on September 8, 2006.”

 

“I am still after 2 years not my normal self, and will need more surgery and am too scared to get treatment.”

 

“On June 12, 2006, I had total hip joint replacement that lasted 1 and one-half hours. I was not put totally to sleep but felt such pain that I cannot find describing words to tell how this felt, I have tried to and could only come up with nightmare.

“This was way too much for me. I have suffered mentally and feel like I’m on a roller coaster ride and can’t get off which makes me feel like I’m in that operating room having the surgery over and over. This has changed me. I’m now spending time with a counselor for PTSD and having to recover from surgery plus the pain.

“I don’t have describing words to tell you how important it would be to have relief from this except, help ,help, help to get this kind of pain from becoming someone else’s nightmares that will change them.

It is probably fair to say that as a victim and patient advocate for anesthesia awareness, I have a unique relationship with awareness sufferers compared to anesthesiologists and other health care workers. While you, as an anesthesiologist, would never say anything that would later sound ridiculous, here are some quotations that patients have attributed to physicians when patients have asked about or reported awareness:

• Why didn’t you tell me you were awake?

• You need to stay off the Internet!

• Oh, you have Irish lineage? Well, that’s why you woke up: You have an Irish liver.

• You couldn’t have been awake.

• You’ll get over it in a couple of days.

• Well, at least you’re alive.

• I had no way of knowing. It’s not my fault.

• I don’t need a brain activity monitor. After all, anesthesia is an art, not a science.

• You were just dreaming.

• You’re obese; that’s something we can’t control.

Suggestions From an Awareness Victim (Me)

1. The words “I’m sorry” have a tremendous healing effect on an awareness victim. An explanation and/or investigation of what allowed awareness to happen should be the right of every victim.

2. Please start using brain activity monitoring NOW — and on more than just “high-risk” surgeries. Of course this assumes such monitors are available. Make your administrators aware of the necessity of having brain activity monitors available in all facilities where general anesthesia occurs or paralytics are used. I am aware of the controversy over the efficacy of brain activity monitoring; but I fervently believe that 80 percent-plus effectiveness is a whole lot better than nothing. In fact, by informing your patients that you take this important precaution to avoid awareness, you are showing concern for the welfare of the patient — something important to the patient/consumer. It might make sense to announce the use of this patient-centered technology as a part of your or your facility’s advertising. You must realize that “awareness of awareness” is expanding all the time.

3. Make anesthesia awareness an integral item in any informed consent.

4. To refer to awareness as a dream is a slap in the face of an awareness victim. At the very least, awareness is a nightmare, a night terror, a panic attack or the most frightening thing that can ever happen to a person. Many victims tell me they no longer fear death or anything except anesthesia. One Hurricane Katrina victim, who lost everything and lived on her roof for several days, said that catastrophic event didn’t hold a candle to experiencing awareness!

5. PTSD has become a commonly used term, but its effects on people’s lives are not to be taken lightly. PTSD sufferers lose jobs, family and friends and try to cope with chronic sleep disturbance and sleep deprivation. They suffer lack of focus, memory loss and have short-term memory problems, in addition to all of the other symptoms of PTSD.

6. Understand that awareness is always a possibility and that your patient may hear every word. Speak to the patient by name.

7. Never doubt, deny or downplay a patient’s account of awareness. Better to exhibit belief and compassion before they start quoting you or anyone else verbatim.

8. Assume the vaporizer tank is more likely empty than full; a large number of victims find out that the canister was empty! To a patient, this seems truly inexcusable.

9. Be in the postanesthesia care unit when your patient wakes up! You were the last person he/she saw before undergoing surgery, and you should be the first he/she sees when waking up. Most of the victims with whom I speak never see their anesthesiologist after surgery.

10. Ask all patients if they remember anything from their surgery. The risk of finding out a patient was aware — and treated properly and promptly — far outweighs the travesty of doing nothing. Recall of awareness can come in stages, become clearer with time, and even be repressed for days, weeks, months or decades. Many ask their patients, “What is the last thing you remember and the first thing you can recall about your surgery?”

11. If you believe that sooner or later you will be forced to use brain activity monitoring, it’s to your personal advantage to do so now. Put some teeth in your Society’s Practice Advisory for Intraoperative Awareness and Brain Function Monitoring by making monitors available in all facilities (hospitals, surgery centers or other settings) for “individual practitioners to use at their discretion.” If a patient requests a monitor be used – for whatever reason – that request should be honored if monitors are available; likewise, the patient has the right to know if brain activity monitors are not available at all.

12. If you see one of the Anesthesia Awareness Campaign’s MedicAlert bracelets on a patient, please remember that studies have shown that awareness can be repetitive and familial.

13. Anesthesiologists should make themselves available to patients weeks/days before surgery to explain anesthesia and answer patient questions. Increasingly anesthesiologists should not be surprised if patients “shop” for a facility that offers brain activity monitors and easily obtainable presurgery consultations.

14. Nonanesthesia colleagues probably need to be educated about anesthesia awareness. Surgeons and others in the O.R. may not know about, understand or believe in anesthesia awareness. This education also needs to be extended to the psychiatric/mental health community.

15. Don’t say things like, “If you wait long enough, [the patient/victim] will forget about it.” Let me assure each of you that victims of anesthesia awareness NEVER forget the day of the week, month, date, year, time, place, what they felt, what was said to them afterward or the “living death” they wake to each and every day. They don’t forget the way their claims were treated either.

16. Every awareness report by a victim (or suspicion of awareness by an anesthesiologist) requires immediate and informed psychiatric intervention. Every hour that passes without help increases the likelihood of permanent PTSD.

17. Administration of additional paralytic drugs will not resolve awareness. Be aware that the administration of a paralytic to a “conscious” patient is like sending ignited fuel through the veins; it is excruciating!

18. Right now the only available established means of patients “filing a complaint” is the Joint Commission. If ASA is going to institute a database of “awareness accounts,” a defined format is critical. Patients must feel confident that their accounts will be taken seriously and will result in further study and possible positive changes in anesthetic administration.

19. The victims of anesthesia awareness are overwhelmingly willing to take part in studies and be included in meaningful databases, including the release of their medical records. They don’t want this to happen again or for anyone else to ever experience such horror.

It remains my hope and mission to educate all who are willing to listen about the consequences of anesthesia awareness.

Carol Weihrer is President and founder, Anesthesia Awareness Campaign, Inc., Reston, Virginia.