Caring for People with Multiple Chemical Sensitivities: Creating Access to Health Care

Townsend Letter for Doctors and Patients,  Jan, 2001  by Louise Kosta

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chief writer, The Human Ecologist

Human Ecology Action League, Inc., Atlanta Georgia [*]

What happens to patients with multiple chemical sensitivities (MCS) when they seek health care for conditions not related to MCS? Thirteen years of close association with the Human Ecology Action League, Inc. (HEAL), and ongoing analysis of HEAL member surveys, have led me to draw several conclusions. The most important of these is that people with MCS need their environmental physicians to facilitate high quality health care from providers who may be neutral -- or even skeptical -- about MCS.

Consider the following incident. A 70 year-old patient with long-standing MCS (20+ years since diagnosis) as well as yeast-related gastrointestinal disease has experienced bouts of abdominal pain over a period of several months. Many years ago she underwent double mastectomy and hysterectomy. She has not had a colonoscopy for over five years. Her environmental physician, who practices in a far away city, recommends that she have a colonoscopy from a provider local to her.

Her family physician agrees to order the test, and refers the patient to the only gastroenterologist in the small town where the patient lives. When she arrives for her initial consult, the gastroenterologist subjects the patient to a diatribe in which he pours scorn on the MCS diagnosis, ridicules the diagnosis of yeast-related illness, and strongly advises the patient to seek care from a mental health professional. Nearly speechless, the patient leaves the office resolved not to receive treatment from this physician.

This decision, though understandable, means that the patient may not obtain a colonoscopy at all. Or it may mean a long delay until she finds a provider who will perform the test without subjecting her to a scolding. She will need to locate a provider in another town. If she finds one, chances are that neither her family physician nor her environmental physician will know much -- or indeed anything -- about the provider or his practice. If she's lucky, she will be able to learn of an out-of-town provider through her personal network of friends and associates, who will convey their impressions of the provider, his demeanor, and his service. If she's not lucky, she may simply rely on the Yellow Page directories for the nearest towns and cities, and arrive at the office "cold."

Either way, the new provider will probably ask why she is seeking care away from her nearest local provider. Her answer to the question may provoke another scolding from the new provider, or at least raise questions in the new provider's mind about how difficult the patient maybe to treat.

This is not an extreme example of what happens to people with MCS when they seek care from providers who are convinced that MOS is either not a problem at all, or if it is a problem, is of psychological origins. Since 1977, HEAL has received many letters and phone calls from individual HEAL members who describe similar situations -- and worse.

In all these situations, the focus of the interaction switches from a focus on the patient's need for care, to a focus on the patient's MCS diagnosis. The skeptical provider, who often has little understanding of MCS, may view the patient as a potential source of continuous, unreasonable and unrealizable demands. Faced with what appears to be a no-win situation, the provider may respond emotionally. The result is a direct attack on the patient's diagnosis, and in some cases, a verbal attack on the patient. Care for the patient ceases to be an issue, as the skeptical provider seeks self-protection by going on the offensive about a diagnostic controversy.

This is a highly unusual situation. I can think of no other clinical situation in which patients are expected to defend their diagnoses. Rather, patients with noncontroversial chronic conditions who seek care for other, unrelated, health concerns simply state their diagnosis, and provide the physician with the name and phone number of the physician who cares for their chronic condition. If necessary, the physicians can then confer about how best to care for the patient. Any disagreement about the patient's condition takes place away from the examining room, and out of the patient's hearing. All proceed with a basic agreement that patients are patients, people in need of care.

Is it good professional conduct for physicians to attack patients about their diagnoses? Of course not. But there is another component to this situation: Physicians who diagnose patients with MCS also have an obligation to these patients to facilitate good health care for their other, non-MCS health conditions.

Environmental physicians, like other specialists, do not provide primary care medical services, nor do they typically staff emergency rooms, provide reproductive health services, or deliver babies. Most do not practice in surgical, cancer, or heart disease specialties. Nor do many treat diabetes, dental or oral disease, degenerative bone conditions, or neurological disease. People with MCS are likely to need the care of those who do treat these conditions, however. Although they cannot (and do not) expect their environmental physicians to provide these services, they should be able to rely on their environmental physicians to consult with their general medicine and specialist care providers about how best to provide care appropriate for the patient with MCS. When it comes to caring for individual patients, physicians have the primary responsibility to provide appropriate care.