By MHAUS President Henry Rosenberg, MD, CPE
The death of Stephanie Kuleba from MH in March, 2008 during cosmetic surgery in an office-based operating room was a striking reminder that MH may occur wherever anesthesia is administered. This event has caused anguish, pain and grief for the family and friends of this young woman as well as the providers of care. As a result of this tragedy, Stephanie's family has developed a web site and campaign to increase awareness of MH.
One of the Kuleba family's concerns was that there was no discussion of the possibility of MH occurring during surgery. Without a family or personal history of MH, few surgeons or anesthesia providers include a description of this syndrome when obtaining informed consent for surgery. Certainly, unless there is an awareness of MH, few patients will ask their health care professional, 'Are You Prepared for MH? MH Kills.'
Given that the data from genetic research shows that as many as one in three thousand people are potentially at risk for MH, it is time that the blindspot regarding MH changes. I believe that the promotion of preparedness and awareness of MH will be assured when patients are asking the right questions.
Times are changing, and there are many new initiatives in the interest of patient safety which will affect how patients communicate with their doctors. One of these initiatives is being spearheaded by The Joint Commission (JC), the hospital and outpatient center accrediting organization. The JC has developed a 'Speak Up ' Campaign encouraging patients to become actively involved in medical decision making for themselves and their loved ones (http://www.jointcommission.org/PatientSafety/SpeakUp/). Patients are encouraged to speak up, to not be reticent about asking challenging questions, and to be open and honest with their caregivers.
There is another major initiative (proposed regulation) underway in medical care that will cause providers to want to be aware of MH. Medicare and several insurance companies and States have developed a list of medical events and negative outcomes that will not qualify for reimbursement. These so-called 'never events' include such obvious problems as surgery on the wrong limb or leaving a foreign body in a patient during surgery. To see the full list, go to : http://www.cms.hhs.gov. Of note: one of the listed events is: Intraoperative or immediately post-operative death in a normal healthy patient (defined as a Class 1 patient for purposes of the American Society of Anesthesiologists patient safety initiative.
It so happens that three MH deaths in the past 2 years have taken the lives of young healthy individuals undergoing cosmetic surgery. Hence this proposed regulation provides an impetus for health care providers to ask patients the right questions, and it may even encourage the providers to be more receptive to patients' questions about MH.
Does this mean that death from MH should never occur under any circumstances?
Our expert clinicians agree that at this point, we do not know enough about MH and its presentation(s) to make this statement. However, it is entirely reasonable to claim that death from MH in a patient who is known to be at risk for MH should not occur.
Because it is rare for there to be outward signs of MH susceptibility or a family history of MH, I believe all patients about to undergo surgery should ask, 'Are you Prepared for MH?' If the answer is a blank look, then ask more questions and consider alternatives.
By asking this question, you will encourage all facilities using general anesthesia trigger agents to have a full supply of dantrolene, a well rehearsed protocol for treating MH, and to spread the awareness of this potentially fatal disorder.
To assist you with your conversation with your doctor, here is a list of some questions that should be answered prior to you or your loved one having surgery:
1. Who will provide the anesthesia and what is his or her qualifications?
A physician anesthesiologist?
A Nurse Anesthetist?
An Anesthesia Assistant?
2. Is the facility licensed by the State?
3. Is the facility accredited by the Joint Commission or other accrediting agency?
4. Is there a written protocol for managing Malignant Hyperthermia?
5. Does the facility have 36 vials of dantrolene?
6. Does the facility have a cart or other location where additional supplies are kept to manage a case of MH?
7. Does the facility perform drills to prepare for MH each year? Have all current employees been trained?
8. What Hospital is back up for the ambulatory center?
9. Is there a written protocol for transfer to a hospital in case of emergency? How long does it take to transfer?
10. Does the facility perform blood tests on site?
11. How many physicians, nurses or other trained personnel are immediately available to care for a patient in case of emergency?
12. Is there a recovery area and is it staffed by a nurse?
13. Is there an anesthesia machine that is used? If so, who maintains the machine?
14. Are patients undergoing general anesthesia monitored by ECG (electrocardiogram)? Is Oxygen saturation measured by using a pulse oximeter? Is exhaled carbon dioxide measured? Are the concentrations of anesthesia gases monitored?
15. Is body temperature measured during anesthesia? How?
16. Is there a defibrillator present?
17. Are my records maintained by the facility? For how long?
In addition, the patient's obligation is to provide complete and adequate medical history. Be sure to provide the following:
1. Dose and frequency of all medications that are taken
2. Mention all herbal medications and performance enhancing medications that are being taken
3. Provide contact information for your physician
4. List all allergies
5. Describe any problems that you or family members may have experienced during or after anesthesia.
6. Describe any history of heat stroke
7. Describe any personal or family history of muscle disorders
8. Describe any history of muscle weakness, severe muscle pain after anesthesia
9. Describe any history of brown or dark urine following anesthesia and surgery or occurring spontaneously with exercise.
Your comments and thoughts are always appreciated.