Caring for People with Multiple Chemical Sensitivities: Creating Access to Health Care
by Louise Kosta
Chief writer, The Human Ecologist
Human Ecology Action League, Inc., Atlanta Georgia*
*Identification for affiliation disclosure only.
Opinions expressed are those of the author.
The Human Ecology Action League, Inc. (HEAL), founded 1977, is a national nonprofit information
and education organization with many chemically sensitive members.
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 may be 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 MCS 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.
This means that the environmental physician must play a central role in the general medical care of patients with MCS. When necessary, patients should be able to simply state that they have the MCS diagnosis, and refer the practitioner to their environmental physician. They should be able to make this referral with full confidence that the environmental physician will be able to provide their non-environmental medicine practitioner colleagues with information that will enable provision of good medical care for the patient with MCS. The physician who diagnoses MCS in a patient is keenly aware of the burdens that MCS imposes. However, defending the MCS diagnosis when seeking treatment, and educating physicians about MCS in the treatment room, should not be among those burdens. Rather, the environmental physician should be prepared to inform MCS patients’ care providers about how best to provide care for these patients.
If the focus is kept on caring for the patient, neither the environmental physician nor the patient’s other care providers need quarrel about MCS. No time need be spent on whether or not MCS is real, whether the patient has MCS, whether MCS is a psychological condition, or any other ideological consideration. Focus on the patient means that the physicians confer only about how best to care for the patient. They should confine their concern to identifying the treatments, devices, and surroundings that are appropriate for this particular individual patient.
In the case of the patient in need of a colonoscopy, the MCS diagnosis and the diagnosis of yeast-related illness need not even arise except as peripheral issues. The patient’s non-environmental illness history alone is adequate to justify the need for the procedure (age, cancer history, recent abdominal pain, no colonoscopy for over five years). The patient’s prior history of drug reactions, if any, is relevant, as is any history of allergy or asthma. The latter may be of particular interest if latex avoidance is indicated, or if fragrance exposure during the procedure could be problematic. All of these issues could be addressed without reference to MCS. The services of the gastroenterologist could have been obtained for the patient, without subjecting her to a humiliating experience, or involving her in a dispute that, properly speaking, is a controversy between professionals outside the clinic, not between physicians and patients inside the clinic.
HEAL members with MCS are very concerned about this situation. Many report that they do not have a primary care provider, because they are unable to find one who understands the treatment ramifications of MCS. They are convinced that without such understanding, no physician can care for them. They do not indicate that they have ever been told by their environmental physicians that questions about treatment can be referred to them directly.
When a provider challenges them about their diagnosis, they feel obliged to defend both it and the diagnosing physician. They do not feel competent to do this, and often they are not well enough to do this when they are in need of medical care. They also feel obliged to provide all the relevant information about MCS that could affect diagnostic and treatment choices. I can think of no other medical situation in which the patient in need of medical care must provide this information. Most patients are unable to do this, and they know it.
Understandably, HEAL members turn to HEAL to help them with this situation. They ask that HEAL encourage physician education about MCS. The organization has done a great deal over the years to increase awareness of MCS and its burdens, and has distributed hundreds of thousands of brochures, articles, public comments and bibliographies related to chemicals and health.
However, HEAL has always been aware that individual patients need individual care that takes into account their entire state of health. This means that for individual patients with MCS, the answer to the question of how to obtain needed appropriate care is a treatment question, and only those qualified and authorized to treat the patient can provide the right answer for that patient.
In an ideal world, all physicians would be knowledgeable about MCS, and amenable to accommodating it. In a better world than the one we currently have, the patient with MCS could avoid practitioners hostile to the idea of MCS, and consult only those who do not share such negative views. In the real world as it currently exists, however, patients with MCS must seek care from providers who, however competent in their fields, are mostly uninformed about MCS, or may be openly hostile to it.
Facilitating medical care for patients with MCS is not the sole responsibility of the MCS patient, nor is it a function of organizations like HEAL. In my view, the primary responsibility for this function rests with physicians who diagnose patients with MCS. Only they can confer with other care providers on an equal, collegial basis. Only they have access to the relevant specialized information about both the patient and the patient’s ability to withstand specific medical treatments. Most important, only they can offer patients with MCS relief from the apprehension that a needed treatment may conflict with limitations imposed by MCS, and result in injury or incapacitation.
Environmental physicians counsel their patients with MCS to avoid exposures likely to incite adverse reactions. When a patient with MCS requires health care, however, this advice may directly conflict with the requirements of needed care. In this situation, the patient needs protection from unnecessary exposures related to treatment, and reduction of risks inherent in treatment. These needs are best met by cooperation between physicians who are focused on the appropriate care of the patient with MCS.
Whose fault is it that this critical need of patients with MCS is not being met? I do not think that there is time to argue about this. The need for health care is urgent for some patients with MCS. Physicians who diagnose MCS should encourage their MCS patients to obtain timely health care, and they should clearly communicate their willingness to assist their patients’ other care givers in providing appropriate care in tolerable settings.
Environmental physicians will inevitably find themselves conferring with colleagues who are uninformed about MCS, or hostile to it. It is important for all to understand that they need not agree about MCS to provide care to a patient with MCS. What they do need is agreement that they share a professional obligation to provide effective treatment with as little risk as possible to the patient.
The patient in need of a colonoscopy also reported that, during her consultation with the gastroenterologist, a medical student was present. He witnessed the physician’s attack on the patient’s diagnosis, and the “off the cuff” recommendation that the patient seek mental health care. He no doubt recognized that the patient was upset by this treatment. But what else did he learn? The answer is clear, and it does not bode well for patients with MCS.
Obtaining appropriate health care will always be a challenge for patients with MCS – the nature of the condition dictates that this must be so. However, the task of obtaining appropriate care will continue to be harder than necessary for patients with MCS as long as environmental physicians fail to become involved with the general medical care of their MCS patients.
Meanwhile, we can only hope that the patient who needs the colonoscopy will soon find a less judgmental physician to perform it. We must hope, too, that if on examination she proves to have a condition that requires treatment, that it will be detected when the least invasive treatment will be both appropriate and effective. If she fails to find a provider, delays having the test, and is later found to have a condition that requires more extensive, more risky, and more debilitating treatment, who will provide for her care?
c/o Human Ecology Action League, Inc.
PO Box 509
Stockbridge GA USA