MHAUS is a Patient Safety Organization!

As part of my “day job” I am in charge of graduate medical education (i.e. residency programs) as well as medical student education at a large academic medical center.  In that capacity I and my colleagues who are supervising educational programs are required to keep up with the evolving standards that govern the training of the physicians of the future. The agency that creates such standards and accredits these programs is the ACGME, the Accreditation Council for Graduate Medical Education, a not for profit agency.  Based on the quality of the training programs as verified by the ACGME through reports and site visits, hospitals and medical centers are permitted to offer such training.  In return, the hospitals receive reimbursement for a certain number of programs and resident positions from Medicare/Medicaid also called CMS, the Center for Medicare and Medicaid Services.  The criteria for accreditation are stringent and the oversight is close, however Congress is concerned that the teaching programs are not doing all they could to teach and implement patient safety, quality improvement programs and reduce medical errors.  The data show that there has been only a small improvement in delivery of safe, effective, quality and cost-effective care to the American public in recent years.  One of the most visible and talked about changes in medical education implemented in an attempt to prevent or reduce patient errors, is the introduction of mandatory restrictions on the number of hours residents may work.  At present the limit is 80 hours/week averaged over four weeks, one day off from responsibilities per seven days and no more than 24 hours of continuous duty.  This in order to mitigate fatigue which has been shown to contribute to medical errors.  There will be a further reduction of duty hours as of July 2011 for interns.  There are other examples of efforts to improve patient safety and quality care, but Congress, who ultimately approves the funding for graduate medical education wants results, not just changes in process.  So the emphasis of this four day meeting has been on how to effect an improvement in quality of care by educating the doctors of the future. The ACGME is not alone in this effort.  The equivalent organizations responsible for accreditation of medical schools are also embarking on a similar initiative.  Furthermore, embedded in new regulations governing Medicare is a reduction in reimbursement to all hospitals and eventually to teaching programs if quality benchmarks are not met.

This conference and the high level presentations led me to think about malignant hyperthermia and MHAUS.  A number of years ago we realized that MHAUS is not only a patient advocacy organization but also a patient safety organization dedicated to improving care of the MH susceptible and his/her family.  It was one of the reasons that we asked Dale Micalizzi, a patient safety advocate and national speaker on patient safety, to join our Board.  Just about every initiative that is undertaken by MHAUS is carefully thought out with the goal of preventing poor outcomes from MH and MH -like syndromes and helping providers and patients realize that goal.  It is hard for us to know how many lives our educational programs, conferences and workshops have saved, but we know that so long as there is patient harm related to MH our work is not done.

It would take me many pages to enumerate the patient safety initiatives that we have introduced but here are just a few:

Our MH hotline provides immediate, directed, patient /provider specific advice regarding MH or MH-like syndromes without charge. Our volunteer hotline consultants handle about 400 patient related calls each year although many other calls are handled by other hotline professionals. Although we sponsor a meeting of our consultants each year for an hour or two, the issues that we deal with are often too complex to handle in a short time. Hence in May of this year we will gather our hotline consultants and professional advisory council members for a whole day meeting to address a variety of issues, such as:

What advice should be given to MH-susceptibles concerning heat exposure and exercise?  Which patients should be advised to undergo biopsy testing and which genetic testing? How should new anesthesia machines be prepared to insure that MH susceptibles are not exposed to “trigger” agents? Can MH patients have outpatient surgery without problem?

For many years, we have recommended that all facilities that perform surgery using MH trigger drugs have a full supply of dantrolene sodium for injection and perform annual drills to be prepared for MH.  We therefore developed a video and a kit to specifically guide facilities in preparation for and conduct of a drill.  The drill kit and video has been enormously successful.

We also learned to our great satisfaction that agencies that survey and accredit hospitals and outpatient surgery centers specifically inquire as to whether the facility stocks a full supply of dantrolene sodium for injection and that it is available within minutes. Some even ask if annual MH drills are carried out. Not everyone necessarily agrees with this recommendation, but in the absence of data to show that lesser amounts of dantrolene would be as effective as the full supply, we support the stand of the accrediting agencies. Imagine that; a small patient advocacy/patient safety organization has influenced the policies of major accrediting agencies. We could not have done it without the assistance of our members, volunteers and our many supporters.

We have known for a long time that patient safety and delivery of medical care requires a team and teamwork. One of the most important clinicians caring for the MH patient are the operating room nurses, same day surgery nurses, and post anesthesia care nurses. Therefore last year we invited representatives of the Association of Operating Room Nurses to attend our annual planning retreat. We found that both AORN and MHAUS were on the same page when it comes to being prepared for MH and managing the MH crisis. Now one of the leaders of that organization, Bonnie Denholm has agreed to join our Board of Directors. We are thrilled to work with this dynamic organization.

An early project of MHAUS was a treatment guide for MH that was easy to use and implement.  This became a wall poster which we advise facilities to post on the wall of their OR’s.  When MH strikes there often is not time to start looking for policies and procedures. We have distributed thousands of these posters and they can be found in almost every operating facility in the US and elsewhere. When MH related deaths began to be reported following the development of MH in a non hospital facility, particularly office operating rooms, we partnered with the Ambulatory Surgery Foundation to create a guide for preparing to transfer a patient who develops MH outside the hospital and requires transport to a hospital. Because of the amount of time required to produce this guide and the high quality of poster design, we have had to charge a modest amount for the poster. Nevertheless several hundred of these advisory guidelines have been distributed. We are now surveying those who acquired the guide to determine how they have changed their practice based on the recommendations for transfer of care.  One of the projects that we placed on our to-do list is the development of a simulation or drill to be conducted in conjunction with the annual MH preparedness drill that would include steps in transfer of the MH patient.

Patient safety and quality improvement is always on the mind of our hotline consultants, board members, professional advisory committee members. That is why we have a quality improvement subcommittee for our hotline that reviews a random sample of hotline reports every 3-4 months.

That is why we survey attendees at national meetings concerning their preparedness for MH, their experience, good and not so good related to MH.

Patient safety and quality improvement is a process that is never completed, it is always evolving. We at MHAUS realize that and take our responsibility to MH patients, their families, the clinicians who care for the patients, the facilities where care is delivered very seriously.

We sometimes hear that some practitioners look at MH in a simplistic manner. No problem. A patient develops MH, you give dantrolene sodium for injection and the patient gets better. End of story. But that is not true. It is just the beginning of the story. Following an MH episode there should be an in depth review of what went right and what could have been improved. There should be discussions with the family and other practitioners as to the follow up of care of the patient and advice for his or her family. 

Even though there may “only” be about 1000 episodes of MH each year in the US, because of the unpredictable nature of the syndrome, every facility where general anesthesia with “trigger” anesthetics are administered, needs to be familiar with MH, have a plan to identify and manage those who are susceptible, and incorporate the advice of our MH experts in care plans.

MHAUS is committed to the helping clinicians, administrators, equipment and pharmaceutical companies ensure that MH patients receive the best, evidenced based care when they require surgery and anesthesia. We are always interested in examining the results of our programs as well. The MHAUS board and I would be pleased to learn of your experiences, both good and not so good, in regard to MH as well as your ideas on how we can improve our programs.