Communicating with First Responders

According to the Centers for Disease Control, accidents are the fifth leading cause of death in the United States. While it is easy for people with VHL to focus their attention on that condition, we should not forget the other events that may occur in our lives.

I spoke with Rod Brouhard on the Powerful Patient about the special needs for people with rare diseases to communicate with first responders and Emergency Rooms. Rod is the Guide to First Aid at about.com, which is owned by the New York Times. He is a full-time paramedic, serving on an ambulance in Northern California. He writes a column for about.com, and articles for a number of magazines.* 

In that interview, Rod helps us understand what information is really needed by an emergency worker in the field, where they are likely to look, and how to connect emergency workers and Emergency Room personnel with the key information from your medical history. Medical alert bracelets are still the most widely recognized device you can carry with you. There are techniques for using that bracelet to refer to more information when you reach the Emergency Room.

The easiest thing for all of us to implement is to define a telephone number in our phone named ICE (for In Case of Emergency). Emergency workers are trained to check for this. If there is room to write additional information in this entry, list the name of the person they need to call, and the most essential bits of emergency information. Some phones have security locks which would make that info unavailable. If so, carry a wallet card.

Rod advises working with your doctor to compile a one-page “history and physical assessment” to be passed to another medical professional. This is the normal quick handoff information that doctors routinely pass to one another, so it will make sense to your physician to compile such a document with two possible scenarios in mind:

  • What kinds of predictable crises might occur as a result of my medical condition? Is there anything about my condition that might cause me to lose consciousness? (e.g., lack of adrenal glands, low insulin production, or other pancreatic dysfunction)
  • If I were in an accident, what is the most important information that the ambulance personnel should know about my medical condition?
For example, some first aid practices must be modified for patients with chronic medical conditions. Medications, blood clotting disorders, decreased pain tolerance, and chronic dehydration all complicate attempts to render first aid to those with chronic illness. Drugs you are taking might interact badly with emergency meds; allergy information might be critical.

Think of it this way: if you are unconscious or unable to speak up yourself, what would you need to communicate to make sure you are treated correctly?

Work with your doctor to compile a one-page “history and physical assessment” to be passed to another medical professional.

There are a number of high-tech solutions being marketed these days, some of which are listed at the end of this article. Not all ambulances have a way to read a USB drive. The first line of defense is a wallet card with the most essential bits of information—allergies, diabetes, medications, lack of adrenals or one or both kidneys. Similarly, this information might be posted on your refrigerator or in the medicine cabinet, two places that ambulance personnel are trained to look if they are called to your home. If you have an issue that might cause you to lose consciousness, a bracelet or other wearable item might be a good idea. These might refer people to a service, device, or file of information that would provide additional information needed by the hospital.

This would give you an opportunity to provide additional important information such as:

•  Whom to notify
•  Living Will or Advance Directive
•  Health Care Proxy
•  Authorization to treat a minor
•  Organ donation wishes
•  Copies of recent scans and/or radiology reports showing your latest health status, so that the hospital can compare them with your status following the incident.

In some accidents or disasters, there is a risk that anything you are carrying with you might be lost or damaged. For example, in hurricane, flood or fire, a USB drive might be made unusable. For this reason, a backup system that houses data on the internet might be the safest place to keep your records. A bracelet or wallet card might lead emergency personnel to that repository.

Where you live and where you are likely to travel may also influence the way you house this information and the service you choose. There are programs specially designed for runners, for children with autism, or for adults with Alzheimer’s or other dementia. There are fewer services that operate in multiple countries.

And as Bob learned following Becky’s experience (see page 1), having the latest set of scans and radiology reports available can assist emergency personnel in evaluating your scans following an accident. In addition to seeing what you look like AFTER the incident, emergency personnel can then have a picture of what you looked like BEFORE, and understand what “normal” looks like for you.

Here are some resources you may like to consider for keeping your medical information on file in the event of an emergency:

MedicAlert Foundation—founded 1956, has branches in many countries including Canada, the UK, Australia, and South Africa. They sell medical ID jewelry including bracelets, necklaces, dogtags, children’s wristbands, watches, shoe tags, etc. MedicAlert Membership, for adults 18 and above, allows you to manage your own emergency medical information record (EMIRSM). The live 24/7 MedicAlert emergency response center transmits medical information to emergency responders and will speak for you when you cannot—anywhere, in over 140 languages. Their “gold” service allows for storage of documents via fax, and even the scans themselves. http://www.medicalert.org or 888-633-4298.

EmergenTAG—a USB drive you can wear on a chain or keep in your pocket or purse. It has an installed program that allows you to enter your medical information. Nothing is stored on
any computer, so you can fill in the form even on a public computer and it will not be stored there. The information is not stored on the internet. http://www.emergentag.com, 888-660-6367.

Road ID—a wristband designed for runners, with seven lines for custom engraving. http://www.roadid.com or 800-345-6336 or +1-859-341-1102. Road ID interactive is an optional associated service. You build a fully updateable, secure Emergency Response Profile (ERP) that is available to first responders via telephone and internet. You can also personalize the first 2 lines of text on the bracelet; the remaining lines and a secure code on the back of the bracelet guide responders to the ERP. http://www.roadid.com or 800-345-6336 or +1-859-341-1102.

*See http://firstaid.about.com. Joyce’s interview with Rod can be found at http://powerfulpatient.org/emergency.

As printed in the VHL Family Forum 19:1, January/February 2011. For permission to reprint, please contact VHL Family Alliance, editor@vhl.org. Further information is available from the VHL Family Alliance, info@vhl.org.