Inspiration for this page goes to Ann McCampbell, MD, of Sante Fe, New Mexico. She has worked very closely with Barak Wolff, M.P.H. (505/476-7000 ext. 102) and the EMS system in her state and was gracious enough to share information about how MCS people can take advantage of emergency services without being harmed. I hope that posting her work on the web will let a world-wide audience know about her good deeds.
I have not reproduced the entire article, as most of the information she wrote is already on other pages on this website. I am excerpting the relevant portions of her article, "First. . .Do No Harm: The Challenge of Patients with Multiple Chemical Sensitivities (MCS)."
My own personal experience has taught me that making friends with the local EMS team has been one of the smartest things I have done. A couple of batches of chocolate chip cookies, holiday cards, offers to help with computer problems, and EXPLANATIONS TO ALL THE SHIFT CAPTAINS about MCS has been invaluable. A little bit of effort on my part has paid off in spades when it comes to needing their help. I go so far as to send thank you notes after each difficult encounter--you can never be too kind to the people who may save your life and keep you from further harm!
On with the information from Dr. McCampbell now. . .
. . .Like all people, those with MCS occasionally find the need to access emergency care, perhaps at an even greater rate than others because of their precarious health. But many with MCS have a deep fear of calling for help. Probably the biggest reason for not calling for help is the fear of having a serious, even life-threatening, reaction to an administered drug. They also do not want to worsen their condition by being exposed to ambulance exhaust (especially diesel), perfume, cologne, scented laundry products and cigarette smoke residue emanating from the EMTs, and various emergency equipment such at plastic oxygen masks, intravenous fluids in plastic bags and latex gloves. People with MCS also worry about being transported to a hospital against their will.
Another element of concern has more to do with the sometimes insensitive approach of health care providers when faced with an MCS patient. Although many EMTs have been reported to be kind, courteous and respectful of MCS patients, others have been rude and ready to assume the person they are treating is "crazy." These fears within the MCS community has unfortunately led patients to prolong calling for help through 911 until their condition has deteriorated drastically.
Knowing how to provide emergency treatment to a chemically sensitive person who is in active distress is admittedly difficult and presents a great challenge to the EMT. The most important thing for an EMT to do is to listen to the patient, accept what they are saying, and respect their limits. This, of course, has to be balanced with providing life-saving measures as taught in EMT training and authorized through treatment protocols. Bear in mind, too, that MCS patients may have difficulty communicating verbally if they have been, or continue to be, chemically exposed.
The following are the important issues for the emergency treatment of MCS patients who access EMS:
- Listen to the patient--reassure patients that you understand they are chemcially sensitive and that you will work with them in providing care. Continually communicate with them regarding their environment, the treatments you plan, and respect the patient's limitations in possibly refusing some interventions.
- Because vehicle exhaust fumes are so toxic, use all methods to minimize exposure to the patient--ideally, avoid idling of the ambulance at the scene of an emergency response, at least turn off the motor when loading and unloading a patient, and close the windows to reduce fumes entering the vehicle during transport. This should be a practice with all patients.
- Refrain from wearing perfumes, cologne, or other strongly frangrant products while on duty--In the closed environment of an ambulance compartment, the over-powering scent of fragrance can be extremely hazardous to an MCS patient.
- Refrain from smoking while on duty or wearing clothes that have smoke residue--If you must smoke, please do it in an open area so that residue does not accumulate.
- Remove patients from hostile environments--as with hazmat protocols, remove the patient from the source of danger by moving them out of offices, stores, theaters, etc.. and into fresh air whenever possible. Quickly remove patients from areas of gasoline spills or leaks, smoke, and exhaust fumes. This measure alone, which is good practice with all patients, may improve the patient's ability to communicate with you.
- Use the patient's own medical equipment whenever possible--some patients with severe MCS have their own air filters, oxygen tubing, ceramic face masks, and toxic-free sheets/towels which should be used in lieu of similar equipment on the ambulance (with the patient's permission). Many personal air filters can easily be plugged into the DC outlet in the ambulance. If the patient desires to take their own medicines-such as vitamins, sublingual antigens or homeopathic medicines--contact medical control for advice and concurrence to allow the patient to self-administer those agents.
- Intravenous fluids in plastic bags may be harmful--ideally, those with MCS should receive IV solutions from glass bottles, but since these are not standard in ambulance vehicles because of safety concerns, consider that an IV may not be best for the patient unless critically life-threatening conditions exist. Also, avoid glucose solutions if possible and use isotonic solutions.
- Avoid of the use of drugs if possible--there needs to be a balance between what is life-saving and what may potentially harm a patient. MCS sufferers are often sensitive to many drugs and preservatives. Listen to the patient's concerns, history of reaction to medicines, and contact medical control for advice on administration of any medicine.
- Avoid the use of latex gloves whenever possible--it is understood that universal precautions are of great importance to EMT care, but if alternatives to latex [i.e. vinyl] gloves are available, these should be used.
There are scores of other suggestions that may improve the EMS environment in treating MCS patients, such as cautious use of disinfectants in the vehicle, hypoallergenic tapes and dressings, and the cleaning practices for linens or towels. Details on these factors can be obtained by contacting Barak Wolff at the EMS Bureau in New Mexico.
It is unfortunate that most MCS patients do not wear identification bracelets that would notify the EMT of their condition, but many are unable to wear metal bracelets due to allergies and sensitivities. Hopefully, a standardized method of identification can be developed in the future that will be helpful for emergency providers and patients alike. When I fly on airplanes, I write my itinerary on a 3 x 5 card and pin it to my shirt; this strategy can be used if you have to go out without an escort and you need people to know what your illness is.
In summary, MCS is a serious and complex illness that is poorly understood by most health care providers. People with MCS may have to access emergency services because of an exacerbation of their MCS symptoms or from an unexpected accident. In either case, it is important for EMTs to be familiar with MCS so that care can be balanced between what is life-saving and appropriate versus what can actually produce more harm to the patient. Listening to the patient, keeping an open mind, and being flexible within guidelines goes a long way towards making it a positive experience for all involved. Utilizing direct medical control when conflicts arise between standard emergency practices and the wishes of an MCS patient are of utmost importance.
As more is discovered in the future about this complicated disease, EMS will undoubtedly adjust its protocols to provide better procedures and treatements for MCS patients, while continuing to strive to "do no harm."
The above text is taken directly from Dr. McCampbell's article from "Focus" magazine (October 1996). For a more personal view on this subject, please take a look at an article that I wrote for "Our Toxic Times" (October, 1997), Refusing Medical Attention. Dr. McCampbell was kind enough to mail a copy of her article to me after she read my article; I can't thank her enough for her kindness and intelligence.
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