This article was published in the October 1997 issue of, "Our Toxic Times." I have received nothing but supportive mail from readers who were kind enough to share their thoughts with me. I have made a few changes to it since I learned pertinent information.
People with MCS who live alone, or who occasionally venture outside the safety of our homes by ourselves, are in a difficult quandary. What happens if we have a severe reaction, are unable to speak (or aren't believed) and some well-intentioned person tries to help us? What if we are taken to a hospital in an ambulance full of chemicals, latex and scented EMTs? How can we exercise our rights NOT to be subjected to medical care that we donšt want?
While there are plenty of legal documents that cover refraining from "heroic measures" these only go into effect once you are in a hospital and under a physicianšs care. How is it possible, in a legally binding manner, to convey the wish that you donšt even want to GO to a hospital--that youšd rather take your chances with Mother Nature and/or God--than with your local emergency room? Laws vary from state to state, but allopathic medical care is pretty much forced upon us in emergency situations; consent is considered to be by default. Those of us who donšt want this kind of care havenšt found a way to protect ourselves. I have been batting this dilemma around in my head for quite awhile because I have been at the mercy of the conventional medical system and have come extremely close to being killed by it because my "treating" (I use that word loosely) physician didnšt believe in MCS many times; it was only by the intervention of a friend that the doctors were stopped. Also, like it or not, a man is more likely to be taken seriously (whether he's the patient or the friend) than a woman is. That's life.
I have spoken to MCS support group leaders, lawyers, the ACLU, the Hemlock Society, medical associations and doctors, and, as far as I can determine, the idea that someone DOESNšT want medical care hasnšt been broached in a legal setting. Interestingly enough, one of the Hemlock Society representatives mentioned that women with osteoporosis have a similar issue as folks with MCS; their bones are very fragile, and, under certain circumstances, they may have no way of conveying to someone that CPR could easily break a rib and puncture a lung, thus doing much more harm than good.
The folks at Medic Alert made a frightening fact very clear. As much as we would like to think that a bracelet would protect us, this method of conveying information is often ignored, especially if the instructions say anything more complicated than "Diabetic" or "Allergic to Strawberries." How is it possible to convey the concept of MCS on a small bracelet to someone who doesnšt already know about it (or believe in it)? Even more enlightening was the fact that a Medic Alert bracelet simply gives SUGGESTIONS as to how to treat someone in an emergency situation; the information given is not legally binding. Since there is no screening by a physician when you get a bracelet, the information is often ignored in an emergency room, especially if you are conscious. Just because something is on a bracelet, it doesnšt mean that a doctor has to read it, much less follow the directions. Once again, the information on a Medic Alert bracelet is NOT legally binding.
Since there appears to be no ready-made solution to this dilemma, I had to come up with my own answer. I tried to be creative and think about what I could, and couldnšt, control. I have no control over people wanting to hover over me should I collapse and not be able to speak, but I could have control over what was on my bracelet. The smart thing seemed to be to write a new Health Care Power of Attorney document naming my aunt as my agent, providing her with a list of specific instructions about what should, or should not, be done for me, and buying a pager for her (the pager was not effective FOR ME, as it's too easy to forget to wear it, so I stopped that tactic). All that Medic Alert backup can provide is a statement that I have a health care proxy and give her phone number. They will not keep a copy of the document; they can only inform the caller that the document exists, and I carry a NOTARIZED copy with me at all times. I have written a script for my aunt that is easy to follow and understand, and we have had some "rehersals" about what to say and do. I made it clear that I donšt want any medical care unless I give my express verbal consent. She has an original copy in her possession at all times, as do I. Like many people with MCS, I have learned that most doctors are pretty uninformed about petrochemicals, and I am savvy enough to direct my own health care in an emergency. With a legal document behind me, I can refuse treatments that I know will be harmful to me, even if a doctor doesnšt agree. I made it clear in the document that I wasnšt refusing ALL medical care, and I was authorizing SPECIFIC medical care, like setting a broken arm, provided I give my consent. Included in the Health Care Power of Attorney document are lists of substances that I can't tolerate, down to such specific things such as Liquid Paper and hair spray, as well as a list of substances that I CAN tolerate, such as Neurontin and saline IV solutions from glass bottles and sodium bicarbonate. If I am with a friend, I ALWAYS tell my friend NOT to call an ambulance if I get sick and show them where they can find my papers and my sodium bicarb/potassium bicarb pills that help me tremendously.
This was the only way I could think of to protect myself from the "allopathic medical care by default" system in our country. For most of the population, this system is fine, and it prolongs the lives of many people. However, those of us with MCS (as well as those with asthma, emphysema and other respiratory illnesses) are exceptions to "the system". Can you imagine having a medical team, all wearing latex gloves, trying to put a brand new plastic oxygen mask on you, or trying to put an un-outgassed plastic tube down your throat so you can breathe? Twice, I have had the distinct displeasure of having oxygen from a plastic mask put on my face despite my objections, and becoming violently sick both times. One nurse even had the nerve to tell me that I was "making up" my reaction; she emphatically stated that there was "no way" the oxygen mask could have made me sick! Despite being an educated professional with a Ph.D., articulate and knowledgeable of medical lingo, I could not prevent the ER personnel from forcing treatments on me, claiming they were for "my own good." The staff was willing to take directions from a MALE friend in the waiting room whom no one knew, yet they wouldnšt listen to me. I donšt understand what part of "no" they didnšt understand when it was clear that I was conscious and sane. Sadly, once you pass through the ER doors and become a "patient", all the rules change, and they donšt necessarily go in your favor. When you go to a hospital, you lose your civil rights faster than you can imagine.
If anyone else has found another way to prevent being hauled off to the ER when they have a reaction, I would love to hear about it. This is not a simple problem to solve. MCS is not a simple problem to solve, either. It canšt be easy for a relative to agree to his/her niece's wish not to go to a hospital if there seems to be a life-threatening situation. I would rather die in my home or outside on a sidewalk on my own terms rather than be tortured in a chemically-laden hospital. I am fighting for the legal right to make my own informed choices about my health care, be they right or wrong. I want these decisions to be left up to me, not to the prevailing state and/or federal legislation.
If you wish to share comments or information about this subject, please contact me by mail at PO Box 89231, Charlotte, NC, 28220 or via e-mail at the address at the bottom of the main page. I welcome suggestions and solutions that have helped others. I feel like I am in uncharted waters here, and will follow this up with my state legislators. Just as people have the right to have emergency medical care regardless of their ability to pay, we should have the right NOT to have emergency medical care if that is our informed decision. This is an issue for the legislature to decide. If onešs wish to be an organ donor can easily be put on a driveršs license, why can't an informed decision to decline emergency medical care be noted likewise?
I am not asking that anyone agree with this opinion and solution. It is only offered as ONE possibility of a way to protect yourself.
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