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*

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

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.

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.

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.

continued at http://www.tldp.com/issue/210/caringfor.htm