An Advocate Is A Hospital Patient’s Best Friend

An Advocate Is A Hospital Patient’s Best Friend

If you ever have to go to the hospital, don’t go it alone. Have a friend or loved one with you. It is the best possible health insurance.

From first entering the hospital waiting room, to being ensconced in a hospital bed, your advocate is indispensable. First of all, you are feeling poorly and probably can’t think clearly, at least not as clearly as usual. Secondly, there is a lot of paperwork that must be done, and your advocate can do most of it for you. And if there is a long wait, there is nothing like having a friend with you.

Important as all this is, the need for an advocate can be critical once you are admitted and in your room. Vital signs will be taken, blood drawn, nursing staff will have questions about special needs. My wife, Julie, has severe chemical sensitivity and does have special needs. But even if you do not, an advocate can interface for you, saving your strength and reducing your anxiety. What if you do not have all your medications? What if you have special dietary rules? What if the room (or roommate) is not suitable? What if you are allergic to alcohol or latex, but not “with it” enough to tell anyone? What if a doctor or nurse is rude to you or ignores your requests? And when you call for the nurse, what if no one comes for a long, long time? These are just some of the situations – special needs or not – that make an advocate indispensable.

Julie has been hospitalized several times in the past five years and I was with her every time. Slept there. Ate there. Ran down the hall looking for things she needed when nurses were too busy. Went home for things we forgot. Julie has an environmental illness called “chemical sensitivity” from exposure to chemicals in a sick building back in 1989. This means that her immune system is no longer able to process the chemical soup we are all immersed in daily. When exposed to common chemicals, she becomes symptomatic: flushed face, difficulty breathing, unable to process information at a normal rate. And if exposed to pesticide, she will, after some hours, have a gran mal seizure.

For example, scented products affect her badly, and you know how common they are, both for personal care and for cleaning. But wouldn’t you think that in the Emergency Room, or the regular hospital rooms for that matter, no one would be wearing perfume, cologne, or hair spray? After all, even the AMA has identified perfume as a respiratory irritant. Well, you’d be wrong about that. Nursing staff, from top to bottom, technicians who take the vital signs, folks who clean the halls and rooms with products that themselves contain fragrance, even doctors and occasional medical students, almost to a person are wearing fragrant personal care products. To further complicate matters, in most hospitals, staff is now required to use a fragrant hand sterilizer when entering a patient’s room.

As Julie’s advocate during one hospital stay, I first decided to speak with the Charge Nurse to inform her of Julie’s sensitivities and ask for help. This was a good idea and I recommend this strategy to everyone. The Charge Nurse can do a lot. First of all, we got a private room. Then we got assurances that staff would be informed about her problems, and a sign appeared on the front door of her room: “The patient in this room is chemically sensitive. No perfume, please.”

Until all this got sorted out, I ended up giving each person the “sniff test” before they came through the door. This worked but was awkward for a while and some staffers took offense. But it protected Julie from unnecessary exposures. Initially, very few staff passed the sniff test and often we had to ask for another person to do the work. At one point I took her temperature and blood pressure myself while the technician waited by the door. Fortunately, there were a few nurses and technicians who did not use perfume, and several others whose use was minimal. They became our regulars, whenever they were on duty.

I finally contacted a hospital social worker who became an “inside advocate” and was very helpful, but even she was scented.

As with most cases of special needs, even nurses who empathize usually don’t “get it.” If you are sick enough to be in the hospital in the first place, how could you possibly get all your needs met and protect yourself from things that are dangerous to you if you are alone?

So, who should be your advocate? If you are married or in a committed relationship, your partner would be a logical first choice. Others include family members who are old enough (and mature enough) to act with discretion but also stand up for you in the face of some opposition, and trusted friends. If these choices are not available to you, then the hospital social worker is whom you should contact before being admitted, if possible, or as soon afterward as possible.