One case is one too many

I have been attending the annual meetings of the American Society of Anesthesiologists since 2004.  These are huge meetings with hundreds of individual sessions, necessitating some hard choices about which sessions to attend out of so many choices.

I was lucky to be accompanied by long-time friend and fellow choir singer, Anne Black.  She was invaluable in helping me get around, figure where to go, and graciously serve as constant companion.  So many people help me accomplish the work of this Campaign!

This year I was privileged and humbled to be a Refresher Course lecturer.  I spoke for 24 minutes of a 2-hour panel on Sunday afternoon, October 18.  The panel was titled Best Practices:  It’s Not Just Science, and my speech was titled Be Aware:  The

Role of Patient Advocates. The session was opened and moderated by Dr. Dan Cole; and other speakers included Dr. Jeffrey Apfelbaum (past president of the ASA) and Dr. Karen Domino (head of all of ASA’s registries, including the awareness registry).  The session, held in a double room, was very well attended. Both the moderator and Dr. Apfelbaum said they had searched the records of ASA meetings, and this was the first time “a patient has addressed the Society.”  Being unable to see any of the audience, I had no visual feedback as I spoke, and while being repositioned after my speech, was unaware of what I am told was sincere and sustained applause.  The panel did not have time to accept the hoped-for 30 minutes of Q&A.

We had some terrific meals with various friends and organizations.

Relationships were renewed, established, and strengthened during these evenings.  It seems to be assumed that there is much free time at ASA meetings, but in reality, I had exactly 2 hours of “tourist” time before we caught our plane home after 6 very busy days!  The convention hall was just short of a mile (according to hall officials) and many were the times we had one meeting at one end (which Anne named Florida) and the next at the other end (a.k.a. Texas!).

I spoke at a book signing of a friend, Dr. Fred Ernst, on Tuesday night.

A special experience was being the “subject” of two Problem-Based Learning Discussions moderated  by Dr. Don Mathews.  These are small groups (about 12) where the discussion is interactive.  At one of the sessions there was another awareness victim/anesthesiologist and also an anesthesiologist who had had a known awareness victim (both international attendees); at the other there were two anesthesiologists with known awareness victims, besides myself.

There was a tremendous number of sessions having something to do with awareness or consciousness in some form or other.

Thinking back to 2004, when a guard tried to deny me admission to a meeting, and most meeting moderators reminded their audience that there were “non-anesthesiologists in the audience,” this year’s meeting showed amazing progress.  In those early meetings, my website was often projected on the lecture screens with disdain and ridicule; this year the Campaign was on many screens as a significant force in a positive manner.

The last 11-1/2 years have not been easy for me or for the ASA to accept.  The last 3 years have been ones of great progress, trust, and collaboration.  The 2009 meeting was historic and humbling.  Those who heard me speak listened politely and intently, and in my opinion, many of them “got it!”

I’m happy that I see my work as a God-given mission.  It certainly hasn’t been easy, and my heart breaks each time a new victim calls.  I’m not at my goal yet:  that of being obsolete.  We’re not at the goal of “One case is one too many.”  We all are certainly moving toward home base.  Never, ever give up!

Passion, persistence, and personal experience yield a positive partnership in patient advocacy.

An unusual event will take place in New Orleans at the annual meeting of the American Society of Anesthesiologists, October 17-23, where a lay person/patient advocate, Carol Weihrer, will be a lecturer in a two-hour refresher course titled Intraoperative Awareness Best Practices:  It’s Not Just Science. After almost twelve years of work educating medical professionals and the public and conducting patient outreach and support, Weihrer will address some of the 15,000-18,000 attendees at the ASA annual meeting.

Anesthesia awareness is the very real phenomenon of being left fully awake and aware, yet completely paralyzed, during general anesthesia surgery.  This happened to Carol Weihrer during the 5½-hour removal of her eye.  Medical research suggests that awareness also happens to100-200 people per day in the US alone.

Immediately after experiencing what is now commonly known as anesthesia awareness in 1998, Ms. Weihrer, working alone, found a mission in life to find ways to prevent and treat this terror of all terrors.  The result was the founding of The Anesthesia Awareness Campaign, a nonprofit patient advocacy organization.

“I never expected to be needed this long, and we still have a long way to go in bringing awareness to awareness,” said Weihrer.  “The goal of ‘STOP Anesthesia Awareness:  One case is one too many,’ has not yet been reached.”

The Anesthesia Awareness Campaign works with victims of awareness, attempts to effect change in the anesthesia system, tries to make the public aware of awareness, and advocates for the use of brain activity monitors in every general anesthesia surgery.

For more information on anesthesia awareness, please visit www.anesthesiaawareness.com.

Surgeon’s arrogance leads to bad patient experience.

A 58-year-old woman is referred to one of the most prestigious eye clinics in the Northeast corridor for cataract removal evaluation.  Her case is difficult, to say the least.  The referring doctor trained under the specialist to whom he has referred this patient.  The referring practice is the most well-known in the city where the patient lives.

Patient has had one eye enucleated 11- ½ years ago due to recalcitrant corneal erosions, at which time she also experienced anesthesia awareness.  Patient speaks both ophthalmology and anesthesiology fluently for a layperson.

Patient has suffered from recurrent corneal erosion syndrome since 1984, undergoing 17 procedures on the right eye, and after a failed alcohol injection had an enucleation in 1998.  Both puncta were surgically sealed shortly after the enucleation.

Within a couple of years of enucleation, patient started suffering erosions in left eye.  A bandage lens has been fitted and worn, with monthly changing, for many years.  Patient is legally blind, extremely photophobic, cornea is unstable, and there is intermittent debilitating pain.  She also suffers anesthesia awareness-induced PTSD.

A cataract has been developing in the left eye and is now rock hard.  There is also macular degeneration.

This patient has worked with one of the referring practice’s physicians since 1987, a specialist who has suffered recurrent erosions personally.

Patient’s vision has deteriorated to the point that there is little to lose by considering surgery; deemed by everyone to be risky at best.

After waiting two months for a referral appointment, traveling to another city, arriving for the appointment one hour early and patiently waiting, the patient was called about 40 minutes after the scheduled appointment time.  An extensive workup is performed by a thorough and pleasant tech.  The bright lights and number of tests is tiring for the patient.

A Fellow comes in, her first words that enucleation for recurrent erosions ‘makes no sense’.

When the referred doctor enters the examination room, he spends about four minutes with the patient, which includes his telephone dictation of the case.  He tells the patient to go back to the two referring physicians and “tell them to do it themselves.”  He mentions Fuch’s syndrome among other known diagnoses.  Patient asks for an explanation of what that is; the reply, “I don’t have time to explain it.  I have a plane to catch.  My Fellow will do it.”

No goodbye.  No apology for being in such a rush.  No bedside manner.  Tell the patient to tell the doctors what he says for them to do.  No discussion of risk/benefit, except that it could put the patient “on a downward slope.  I’ll think about it.”   No follow-up appointment is ordered.

This well-informed patient is appalled by the rushed atmosphere and callous treatment.  This patient knows the complexity of her situation, and is fully prepared to hear, ‘I won’t touch it,’ or ‘Here are the problems and the risk/benefit.’  The patient is not prepared for a four-minute consult and instructions to tell her current doctors what the respected expert said for them to do.

When you make a referral, do you speak with the referred doctor about the patient?  Do you have an idea about how that patient will be treated?

The most disturbing part of this visit, outside the personal feeling of brokenness by the patient, is that this respected doctor is teaching his Fellows how to be arrogant.

Response on Preventing Intraoperative Awareness

In response to the June 3, 2009, article Preventing Intraoperative Awareness,  I am disappointed with this article because I see it as one-sided.  The clause but caution must be used when discussing this controversial trend makes no sense to me.  Anesthesia awareness is not a “trend”: it is real; it is devastating; it causes tremendous emotional sequelae, it is often denied; and it needs to be prevented by any means possible.  The only caution I see in discussing anesthesia awareness is in NOT discussing it – before or after surgery or an actual occurrence of awareness.

Dr. Johnstone’s statistic of .1-.9% incidence of unintended intraoperative awareness shows a significant increase from previous statistics of .1-.2% of awareness during general anesthesia surgeries (quoted later in the same article).  These new statistics increase the real numbers to 100-900 reported cases per day in the US alone.

For over 11 years, the Anesthesia Awareness Campaign has advocated for victims of awareness and worked in every way possible to increase awareness of awareness and acknowledgment of awareness by the anesthesia profession.

The fact that the use of brain activity monitors was only fleetingly referred to in your article is disappointing.  While not universally accepted as the answer to the prevention of over- or under-dosing of anesthetics, brain activity monitoring may well be the best currently available non-invasive tool to significantly decrease anesthesia awareness, and it is becoming more and more widely used.

Indeed, while the ASA has funded an awareness registry and does provide literature on awareness, there is still much to be done.  In the last year, the ASA, AANA, and this Campaign have been working together on the problem — one would never know it from this article.  I appreciate the opportunity for The Anesthesia Awareness Campaign to present another side of the story.

The Joint Commission (JCAHO at the time) Sentinel Event Alert #32 of October 2004, states, as cited in your article, Factors contributing to the risk of anesthesia awareness include the increasing use of intravenous (IV) delivery of anesthesia, as opposed to inhalation, and the premature lightening of anesthesia at the end of procedures to facilitate operating room (OR) turnover. The Anesthesia Awareness Campaign agrees with these statements.

Consistent use of brain activity monitors, with alarms left on, during all general anesthesia procedures is, at present, the best way to monitor level of consciousness in intravenous anesthesia. The most disturbing, but true, part of the statement is the premature lightening of anesthesia at the end of procedures to facilitate operating room (OR) turnover. How can anyone justify risking something as serious as anesthesia awareness in order to facilitate OR turnover?  Every patient should be given the dignity and patient safety of remaining anesthetized until the procedure is completed.

As Dr. Moore correctly said, Stop Anesthesia Awareness.  One case is 1 too many. Why is every possible step not being taken to avoid this trend?  Awareness continues to happen every day.

Many prominent anesthesia providers have told me that up to 95% of non high-risk cases of awareness are due to human error. Patients can’t know which providers will fail to check their equipment, administer drugs in the wrong amount or frequency or order, or allow other lapses of care.  Patients place their trust in providers, but patients are vulnerable.

I have spoken with anesthesia providers from all surgical situations who tell me, I’ve done xx,000 anesthesias’s and never had a case of awareness.  The statistics suggest that these providers just don’t know who or how many have experienced anesthesia awareness.  First-time victims of awareness don’t wear signs saying, it’s going to be me.

What is your facility doing to prevent anesthesia awareness?

About the Author:

Carol Weihrer is the President & Founder of the Anesthesia Awareness Campaign, Inc… She can be reached atanesawareness@aol.com, or visit the website at www.anesthesiaawareness.com.