We probably all feel somewhat lost in a hospital or nursing home (aka “rehab facility”). Unless you’ve been educated in or have been a part of the healthcare system yourself, it is like a foreign land. When an aging parent or other loved one goes there, you may experience an intimidating sense that you have no idea what’s going on. If you do ask anyone they may give you information in a foreign language, “medicalese” full of jargon, initials and other acronyms you do not understand.
This has been a concern of ours at AgingParents.com for some time and we’re doing our best to help you figure out a path if someone you love has to be in an acute hospital or any kind of facility after that. Our experience of the healthcare system from our own healthcare professional backgrounds and from having an aging parent in her 90s spend time there is that the system is a mess unless you have some idea of how to navigate it. They don’t communicate well with each other nor with you in many instances. Part of the problem is the way they talk.
Here’s a quick list of three things you need to do to understand the talk better. Whom you approach is part of the strategy you need.
- First, ask to speak to the charge nurse.
This is a person authorized to assign nurses to the patients on the day’s roster and who oversees the patient’s care through the other assigned workers. They change from day to day with some rotating in to cover for days off and other events but someone is always in charge. What you need to know is your loved one’s condition (in plain English, if they forge to speak it) and what you can do to support your aging parent or other. The person in charge can quickly look on the computer and pull up the record of all that has been noted at any time. They can explain if you ask.
- Get the name of the doctor overseeing the orders for care. This may be called a “hospitalist”. Theoretically, this person coordinates the medical team and authorizes certain matters. He or she works in the facility and is often more reachable than a specialist who has an office elsewhere. Find out who is directly responsible for your family member’s care and speak up. You need information; they have at least some of it. Ask to speak to the hospitalist or the medical doctor who is writing orders for care. That individual can tell you what is happening and what is next in terms of scheduled tests, treatment, changes in care and potentially, discharge plans. Let them know that you need it in plain language that anyone could understand, not just “PT, OT, ST, cath, stat, eval, and O2.”
- Call or visit daily and ask the nurse who is caring for your loved one for a report on what happened that day and how your loved one’s medical condition is currently. If they use jargon, do not just remain quiet. Ask them what that means. They use many standard abbreviations in their chart notes as they are entered into the computer. They tend to speak in the same abbreviations. Lay people have usually not heard of them nor do most people know what they mean. For example, if someone says your aging parent has a UTI, you may not know that these initials stand for urinary tract infection, which requires treatment with antibiotics. If they say someone is going to “d c” something you may not know that means discontinue it. There are dozens and dozens of these abbreviations making up “medicalese”. Healthcare personnel may use them without thinking that they need to translate for you.
The entire experience of having a family member in any kind of medical facility can feel frustrating for anyone trying to stay informed about their loved one. The best way to overcome your own frustration is to assert yourself (politely please) and get the information and explanations you need in a language you can understand. Don’t be embarrassed to say you do not “get” what they’re saying. Here’s a good sentence to use: “Dr. (or nurse or whomever), I didn’t understand what you just said. Could you put that another way so that a non-medical person like me can make sense of it please?” That may wake them up and remind the care provider to knock it off with the jargon and tell you what you need to know. The only way that happens is if you speak up. If you’re still struggling to understand all this and need some advice about your aging loved one, please contact us. We’re here to help!
Dr. Mikol Davis and Carolyn Rosenblatt
co-founders of AgingParents.com