By MHAUS President Henry Rosenberg, MD
Shortly after MHAUS was formed in 1981 and the basic outline of the mission and vision of the organization was enunciated, the question of helping clinicians deal with MH in real time was discussed. Of all the different suggestions, the idea of a 24/7 service was suggested by one of the original Board members (most likely Suellen Gallamore) and we all agreed. Thus the concept of the MH Hotline was born.
However, In order to establish such a service several obstacles had to be overcome. First and foremost a group of experts familiar with MH had to be identified. The experts had to be willing to be available on a rotation schedule to answer calls. Since the MHAUS organization was first being run out of the basement of Mrs. Gallamore's house, a telephone service had to be identified to accept the calls and connect the caller to the expert. A scheduling coordinator had to arrange the schedule and issues of liability had to be settled. We also wished to have the experts document the calls with the hopes of learning more about the presentations and management of MH.
Through contacts that I had with those physicians who were either in charge of MH testing centers, performing research in MH or having a strong interest in MH in addition to being respected anesthesiologists I began to seek experts to serve as consultants. Much to our surprise we were very quickly able to identify sixteen experts willing to serve as hotline consultants (See list below). Some remained as consultants for many years, others dropped off because of retirement, change in jobs, etc. They all however stated how much they valued serving on the hotline and sharing their knowledge with other practitioners. Although the issue of financing the hotline was raised, there was never any hesitancy in deciding that the service needed to be free. None of the consultants received compensation for their service at any time since then until now. After a time, it became a mark of distinction to be asked to serve on the hotline. In the mid 1990's we were able to secure partial support for the hotline through the generosity of the American Society of Anesthesiologists which continues to this day. General support for the activities of the organization including the hotline was derived from many other sources, but the manufacturers of Dantrium IV, first Procter and Gamble, and more recently JHP Pharmaceuticals have been especially generous.
We began spreading the word about the hotline through our publication, The Communicator, as well as by word of mouth at many meetings. We also developed stickers with the hotline number to place on telephones and those of us who were invited to speak on MH made the community aware of the service.
Since the small staff at MHAUS was not available 24/7, a call center needed to be identified. Naturally we thought first of the MedicAlert Foundation since they were well known to provide information to doctors and hospitals for those patients who purchased ID tags indicating that they had one or another medical conditions. In those days, the caller to the hotline would be connected to a MedicAlert operator who would give the caller the names and phone numbers of the three consultants on call. It was up to the caller to make the connecting call. That system worked well enough, but was cumbersome. So, after about 10 years MHAUS made arrangements with the Poison Control Center located at Upstate University in Syracuse. This was a natural fit. Poison control nurses were specially trained in handling emergency calls and were able to triage calls according to severity. In addition, the poison control center nurses were required to document each call and make at least one follow up call. The Poison Control Nurses were trained in differentiating an MH crisis or emergency and finding one of the three on call consultants and making the phone connection directly. Other, non emergent calls were either referred to the MHAUS office or the nurse was able to refer to our printed material to give advice. For example, if someone called to ask if a specific drug was a problem for MH-susceptible people, they were able to answer the question by reference to material provided by the MHAUS. This was a vast improvement in efficient handling of calls. It also helped that the Poison Control Center was headed by a toxicologist and was located close to the MHAUS office in Sherburne, NY. This arrangement worked exceedingly well until the funding for poison control centers was cut in NY State and other states and the center in Syracuse was required to handle calls that were formerly handled by other centers.
So, in 2009, after a search process the MH hotline moved to Denver Health in Colorado which also ran a poison control center. Because of personnel changes and an increase in cost for handling the calls (MHAUS pays for each call to the hotline), we began to search for another home. We learned by then that MedicAlert Foundation had grown and evolved over the years and was being led by a forward looking health care executive, Andrew Wigglesworth. So in August 2012 , we were back to the organization we started with! Life is like that. So far the arrangement has worked out very well. In addition, there are opportunities for developing programs that will be mutually supportive for each organization. Look for essays and information about MH on the MedicAlert web site (www.medicalert.org).
Meanwhile the anesthesia and surgical community discovered the hotline and soon the hotline was receiving hundreds of calls per year, of which anywhere from 400 to 800 were connected to one of the MH experts (see figure). Taking even a modest estimate of calls to the hotline consultants of 300 per year, the hotline has handled at least 9,000 calls involving a patient directly and immediately. I cannot say how many lives were saved or morbidities prevented, but I know that many patients were saved by our hotline experts.
The number of hotline consultants has also grown over the years and we now average about 30 active consultants in the panel. The entire list of hotline consultants may be found on the MHAUS web site, www.mhaus.org
To handle the scheduling, credentialing and tracking of calls along with a quality assurance program, one of the MHAUS staff was designated as the hotline coordinator. Gloria Artist has carried out that function for many years. Of course the hotline work is not a full time job, and she has many other tasks related to MHAUS. We are indebted to Gloria for her diligence and commitment to the proper functioning of the hotline.
The hotline has served a valuable function both in terms of providing guidance and support to anesthesiologists, nurse anesthetists, intensivists, surgeons, nurses and many other clinicians from every part of the country and sometime from other countries. There have been many lessons learned from the hotline as well concerning the presentations of MH and MH like disorders.
We request that each call is documented by the consultant. Many of the calls led to patients being entered in the North American MH Registry. The hotline documentation is not meant to be a detailed database but nevertheless the information has served as the basis for abstracts at national meetings, for presentations at national and local meetings as well as teaching exercises for anesthesia trainees. In addition, one of the consultants summarizes the hotline calls handled over three to four months for each issue of the publication, "The Communicator". Several years ago, MHAUS also instituted a web based case of the month based on calls to the hotline. The answers are posted after about a month with an explanation of the answers.
Hotline experts share their experience concerning difficult, challenging and interesting cases in several ways. The most immediate method is via a closed discussion list serve. All the postings of course preserve confidentiality of the patient. Here hotline consultants will provide comments and information concerning puzzling cases. For example, a patient who develops rhabdomyolysis after uneventful surgery, or a patient who develops an MH-like syndrome after ingesting drugs such as Ecstasy lead to many comments concerning management of the patient and subsequent diagnostic testing. In addition, each year a breakfast meeting is held during the American Society of Anesthesiologists meeting to discuss new issues related to MH and provide feedback to the MHAUS office. In 2010 a meeting of hotline consultants and professional advisory council members was held in Chicago to develop consensus statements on a variety of commonly asked questions, including: Advice on preparing the modern anesthesia workstation for the MH-susceptible person; Advice for the MH susceptible concerning heat and exercise; Management of the patient with mitochondrial myopathies. These and other consensus statements are posted on the MHAUS web site.
In addition to the occasional presentation on lessons from the MH hotline at national meetings, individual consultants are often asked to present their experience with the hotline at local and regional anesthesia meetings. A few years ago, a team of hotline consultants presented findings concerning management of the pediatric patient with a myopathy at the Society for Pediatric Anesthesia.
A quality assurance program was initiated over 10 years ago whereby a selected group of consultants review advice provided on 10 randomly selected hotline cases each quarter. The findings and comments are shared with all the hotline consultants and have formed the basis for abstracts and publications.
How are hotline consultants selected? How are they oriented to the hotline? Consultant recommendations derive in almost all cases from other hotline consultants. A letter of support and CV is reviewed by the Quality Assurance Committee of the hotline. The new consultant is provided with a handbook of guidelines, FAQs and a series of typical cases. A mentor for the consultant(usually the person who recommended the individual) is required to review all consultations offered by the new consultant for the initial two weeks that the person is assigned to the hotline.
The Board of Directors of MHAUS regards the hotline as the jewel in the crown of services that offered by MHAUS. We receive many compliments from callers, ranging from "You really helped me out of a difficult situation" to "I really needed the reassurance that what I was doing was correct." Even though the hotline consultants meet once a year, and not all consultants attend the meeting, we all feel as if we are colleagues and are proud to serve the medical and patient community.
We all have gained from our service on the hotline. We have learned how challenging it is to distinguish the cause of hyperthermia, acidosis and rhabdomyolysis in the perioperative period. Years ago, we learned that sudden cardiac arrest in a young male is usually secondary to hyperkalemia in a patient with an undiagnosed myopathy; we have learned that some patients respond to an initial dose of dantrolene immediately and recover quickly, while others require 10mg/kg or more and suffer from muscle weakness or muscle pain for weeks. (What we don't know is how to differentiate those that will suffer complications from those that don't.) We have learned that not all MH crises are marked by hyperCKemia and rhabdomyolysis; we have learned that some patients who develop hyperthermia and cardiac arrest harbor an MH mutation in their genome; we learned shortly after the introduction of laparoscopic surgery that hypercarbia from insufflation of carbon dioxide can be mistaken for a sign of MH; we have learned that MH may present early in the post op period, but not beyond the first hour or so of recovery; we have learned that MH susceptibles who have an uneventful non- trigger anesthetic may be discharged from a facility within two hours of end of surgery; we have learned that mortality from MH is higher when it occurs in an out of hospital facility. These are only some of the things we have learned from the hotline.
These observations have driven revisions in our educational material including recommended treatment for MH and also development of Recommendations for Preparedness for MH in an Ambulatory Center.
The MH hotline in my opinion, is unlike any other service. It is free to the users; it is available 24/7; it is staffed by physician experts; the service functions efficiently and effectively; the information from the hotline is shared with the medical community on a regular basis and has served to improve quality of care.
Naturally, such a service is not really free. For example, the call center is paid each time there is a call. The hotline coordinator is salaried. The MHAUS office oversees the operations of the hotline and trouble shoots any problems. There is a cost for the annual meeting of the consultants. There is a cost for maintaining the web site and publishing information derived from the hotline.
Your support of this life saving service is important. MHAUS is proud of all that has been accomplished and all of us associated with the hotline are proud that the consultations have helped hundreds avoid major complications or death from MH. In addition the lessons learned from the hotline have helped providers avoid many problems related to MH.
All of us associated with MHAUS, including the consultants, the professional advisory committee, the staff and the Board of Directors are dedicated to continuing and expanding the work of the MH hotline. I hope my narrative has given you some insight into the functioning and value of the MH hotline. Thirty years has gone by very quickly. We certainly hope and intend to continue this valuable service for many more years!
Some of you may read this before the American Society of Anesthesiologists meeting . IF so, and if you are attending the meeting, please be sure to join us on Sunday the 14th of October for the MHAUS reception honoring thirty years of service by the hotline. If you cannot attend, by all means stop by the MHAUS booth at the ASA and say hello.
Tom Blanck, Beverly Britt, Trey Flewellen, Carolyn Greenberg, Patricia Hartwell, Richard Kaplan*, Sheila Muldoon, John Ryan, Robert Reynolds, Henry Rosenberg*, Linda Stehling, Claude Taylor, Peter Waterman.