Is your patient’s home or work environment causing a disability?
Is your patient’s home or work environment causing a disability?
Here’s how to help chemically sensitive patients remain productive
Many clinicians and employers remain skeptical about illness reactions reported by chemically sensitive patients. This skepticism surrounding multiple chemical sensitivity (MCS) often delays treatment and accommodation, leading to increased disability and delays in returning to work. Case managers must exercise their advocacy role in helping such patients receive the necessary modifications to their work and home environments. Those modifications, say clinicians and advocates, will minimize the exposures that prevent patients from being able to return to work.
What makes MCS such a hard sell for some payers, employers, and clinicians is that the symptoms of MCS are diverse and unique to each individual, says Ann McCampbell, MD, chair of the Multiple Chemical Sensitivity Task Force of New Mexico in Santa Fe. "The same chemical exposure may trigger different symptoms in different individuals. The unifying factor in people with MCS is that their symptoms come and go in relation to chemical exposures that do not ordinarily affect others."
(The wide range of symptoms and the way they disappear and return lead some clinicians to view MCS as a primarily psychological disorder. For other views of MCS, see Case Management Advisor, April 2000, pp. 60, 65-68. For more on MCS diagnosis and accommodation, see stories in this issue on pp. 111-114.)
The MCS phenomenon generally begins with an initiating exposure. Over time, the chemically sensitive individual reacts to more and more substances at lower exposure levels. Most patients can identify a specific exposure that appears to have initiated their illness; for example, a pesticide application or remodeling project. Once chronically ill, patients experience a wide range of increasingly disabling health problems. McCampbell says the following are common symptoms of MCS:
• headache;
• fatigue;
• sleep disturbances;
• arthritis/joint pain;
• dizziness;
• poor coordination;
• heart palpitations;
• respiratory difficulties.
In addition, she notes that chemically sensitive patients may experience difficulty in concentrating, memory loss, learning problems, and aphasia after a problematic exposure.
"There is no one single test that can confirm a diagnosis of MCS. However, there are several guidelines for diagnosing MCS," McCampbell says. "In fact, the diagnosis of MCS is primarily a clinical diagnosis requiring no testing. The patient comes in and gives a typical history and course of illness. You basically confirm the diagnosis with response to therapy beginning with avoidance of chemicals. It’s a matter of trial and error."
One useful tool in confirming a diagnosis of MCS is to ask patients to keep a journal, says McCampbell. "If the patient says, I think perfume makes me dizzy,’ have the person keep a journal and record their response to different exposures. Are they fine on the weekend at home and then feel dizzy again when they return to work on Monday and are exposed to the perfume of co-workers?"
Testing to evaluate symptoms
In fact, physicians who specialize in treating the chemically sensitive say testing should be limited to evaluating specific symptoms. "I don’t do a lot of testing unless there are symptoms that seem amenable to testing," notes Michael B. Lax, MD, MPH, medical director of the Central New York Occupational Health Clinical Center and associate professor of medicine at State University of New York Upstate Medical University in Syracuse.
"If the patient complains of shortness of breath, it may be useful to take a chest X-ray and perform a pulmonary function test," he advises. "There is no test that makes the diagnosis. Any testing that’s done is only to make sure nothing else is going on that could explain some or all of the symptoms."
He adds that evaluating chemically sensitive patients is like evaluating any other patient. "If a chemically sensitive patient complains of chest pain, I work them up for heart disease like I would any other patient with chest pain. I use a traditional health approach to chemically sensitive patients beginning with a detailed job history. It’s like playing detective — figuring out what the person has been exposed to and connecting it to the symptoms."
Several years ago, Lax and his colleagues reviewed the charts of the first 40 patients they treated for MCS. "We analyzed the cases for types of exposures that seem to be associated with onset of symptoms and the kinds of measures that seem to improve or worsen those symptoms," he says. "We found that many people are getting sick from preventable exposures."
The two most common preventable exposures in Lax’s small study were construction and renovation projects and pesticide applications. "The most obvious thing we saw in this population was that construction and renovation of buildings that are occupied while the work is being done lead to illness," he notes. "We also found that when pesticides are applied in occupied buildings, people get sick. In fact, this is such a widespread problem that many schools and public agencies in New York are now using an integrated pest management program which eliminates the use of pesticides in buildings. I think these types of measures are reasonable in terms of trying to prevent this illness."
Limiting and preventing exposures when possible is definitely the best way to improve the health of chemically sensitive patients. However, McCampbell notes, there is a wide range of treatments that bring relief to some MCS patients. "Not all MCS patients are relieved by the same treatments. What helps one MCS patient may have no effect or even worsen the condition of others," she explains.
Treatments McCampbell says have helped many MCS patients include:
• nutritional supplements given orally, intramuscularly, intravenously, or rectally;
• digestive aids;
• hormone supplementation, such as thyroid, adrenal, estrogen, progesterone, and melatonin;
• antidepressants;
• anticonvulsants;
• antiparasite treatments;
• supplemental oxygen;
• exercise;
• replacement of silver/mercury dental amalgams.
Call to arms
Case managers who step forward as advocates for chemically sensitive patients can mean the difference between employment and total disability and even homelessness, say MCS advocates.
"People who don’t have this disease can’t understand it. The minute someone admits they have this disease, anything else they say becomes suspect," notes Susan Molloy, MA, BA, a disability advocate who counsels MCS patients for an independent living center in Prescott Valley, AZ, and who has served on numerous state and national policy committees for MCS, including the National Coalition for the Chemically Injured.
"No one would ask a wheelchair-bound individual to explain why they can’t walk up the steps to their house before funding a chair ramp," she says. "However, case managers are being asked to extract enormous amounts of medical, technical, and legal information to prove that many chemically sensitive individuals are disabled. In addition, payers don’t cover the testing necessary to prove disability."
Molloy says case managers could improve the health and increase the productivity of their chemically sensitive patients by educating housing authorities, landlords, employers, and schools on how to make their indoor environments less toxic.
Case managers also can explain to employers and landlords that the accommodations necessary to make a living or working environment more comfortable for chemically sensitive patients often are relatively inexpensive, says Mary Lamielle, executive director of the National Center for Environmental Health Strategies in Voorhees, NJ. "There was an insurance claims adjuster who became ill, and the accommodation that made it possible for him to return to work was a simple modification of the ventilation system and a request that his co-workers not use scented products," she says. "In addition, he was allowed to attend staff meetings and training sessions by speaker phone, or wear a mask. The total cost of the accommodation was $650. That is a doable thing."
Lamielle adds that sometimes just modifying a person’s work schedule can mean the difference been productivity and disability. "For example, many buildings shut down their ventilation systems over the weekend or at night. Unfortunately, to make matters worse, this is the same time when many cleaning activities that cause reactions in the chemically sensitive take place," she notes. "Simply allowing employees to delay their return to work until the ventilation system is fully operational and the air has had time to clear can greatly eliminate illness."
Addressing the workplace
Patients sometimes can take action in their own behalf. Several employees in one public library in New York City became ill after exposure to certain cleaning products, notes Lamielle. "The employees made a list of less toxic cleaning products, bought samples, and tested them. They went to 200 employees in the building and asked whether the products would be acceptable to them. Then they went back to management and asked whether the cleaning staff could switch to the less toxic cleaner. Management agreed, and the problem was solved with no noticeable expense."
Unfortunately, once individuals are identified as chemically sensitive, they often face harassment from co-workers, adds Lamielle. "Case managers can educate employers and employees about MCS. Too many times, a well-meaning employer will ask employees to refrain from wearing perfume to work because it’s making Bonnie sick.’ This only serves to draw attention to Bonnie and [invite] both subtle and overt harassment."
Lamielle recalls one case where a guidance counselor was forbidden to open her window in order to improve the air quality in her office. "Not only that, but the window was nailed shut. We’ve also heard of cases of name calling and of chemically sensitive individuals having perfume sprayed in their faces in the workplace."
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