Navigating health care in the United States is challenging and challenged. Currently the 800+ insurance companies, each with multiple “products”, the 500+ electronic medical records that don’t talk to each other, the increasing volume of information and the decreasing number of physicians make getting care very challenging. Here are some steps to help you navigate.
1. Get your records and keep copies.
Get the disc of any radiology studies: MRI, xray, CT scan, echocardiogram. Keep them. Hand carry to your visit with the specialist. Yes, I know your doctor said they’d be sent and I know the specialist’s office said they’d get them, but I have two friends so far this week in two days who traveled 2 hours or more to a specialist who DID NOT HAVE THE STUDIES. Do NOT give your only copy to the specialist. Demand two. Either get them on different days or just pay for the second disc.
A clinic closed in our area a year ago. It was in three counties, 3400+ patients. The physician owner was not paying the bills, including the electronic medical record. We couldn’t get records, the emr company wouldn’t release them. Gone. Thirteen people called to be new patients with me the day the clinic closed and we took five new patients a week for 6 months. You need a copy of your records.
2. In the specialist’s office or ER, do NOT give your records to the receptionist.
Hand them to the physician only. Hand them copies, you keep copies. “When will you be getting back to me?” That is, if it’s two hundred pages of complicated records, when does the physician think they can read (some) of them? The real truth is that WE CANNOT READ ALL OF THE OLD RECORDS. We don’t have time. We have to sleep. We read what we can and there are MOUNTAINS of old records that we haven’t read. I have files of old records and I pull them for visits so we can look up specific things. I have asked patients to go through and find specific things: find me the MRI report of your back.
Because what is really happening in many offices is that the information is being scanned but not read. Truly. I think this is dangerous. I had a patient who had five specialists and me. I was sending updates to his rheumatologist, with letters, asking questions and not getting a word back. Finally the patient went for the two hour trip to see the specialist, who called me: “I had not read any of your notes! I didn’t know what was happening!” I saw RED. Oh, so my letters and the ER notes and the other specialist notes that I faxed to you MYSELF about a very sick, very complicated medicine WERE NOT READ? I wanted to scream at her, but I didn’t. I just said, “We really need your help and I have been trying to keep you informed.” Through gritted teeth. Then later I kick and hit my heavy bag. And at that point the specialist was finally helpful. It still makes me furious just to think about it, so I have to work on forgiveness once again.
In my office, if a physician (me) has not read it, it has not been scanned. There will NOT be surprises in the scanned chart. The unread old records are filed alphabetically and when I have a time turner, I will have time to read them all, right? And then in a visit, the person asks if I got their mammogram report. I have to LOOK, because I sign off on about a billion different pieces of paper a day and I really don’t remember the names of all the people who had normal mammograms. I don’t try to remember that: I know who has an abnormal one, because I am worrying about them.
3. Make a record trail that you can quote.
When you call the physicians office, get the name of each person you speak to. Write it down. Have them spell it. Ask how soon you will be called back. Ask what you should do if you do not get a call back. (That being said, every physician has to prioritize the calls. It’s sickest first, not first come first served. If your call really is an emergency, then you should be in an ambulance, not calling your doctor.)Our local mental health was in such disarray, understaffed, underfunded, that my instructions to non-suicidal patients were: “Call every day, be polite, and call until they make you an appointment. Do not wait for the call back. Call daily, they just don’t have enough staff.”
If you fax them the missing notes, keep a copy of the fax proof. Call after your fax the missing records. Ask if they received them and then write down the name of the person you spoke to, date and time. I put a computer message in the chart for 99% of the phone calls I have with patients. I may miss 1% because I get interrupted or a really sick patient arrives or another phone call or whatever. Ask when the physician or his assistant will be calling you back about the records or better yet, make an appointment: “He did not have the records, so I would like an appointment as soon as possible now that he has them.” This forces your physician to look at the old records, because the patient is coming in. I do not read old records before a new patient shows up. I used to, but then people no show for a one hour new patient visit and I feel used, abused and grumpy. So I don’t touch the old records until you show up. After two one hour new patient no shows we tell the person they need to find another physician. Two strikes on the new patient visit and they are out.
If a person is really really sick, family or friends should be there. Ask questions. Who is each person who comes in the room? Do they have the clinic notes? Don’t assume they do, I am not on our hospital’s EMR because it costs 2 million dollars. The inpatient hospitalist doctors almost never call for my notes. I fax my notes anyhow and call them, but the information gap is BIG ENOUGH TO DRIVE THE MOON THROUGH. Really. I am sorry to burst the electronic medical record bubble, but we have 500ish different EMRs in the US right now and they do not talk to each other, so every patient arrives accompanied by 2 years of paper records (or more), 200 pages or more. I joke that they need a bigger doctor because the paper is too heavy for my 130 pounds. And many many times, the hospital medicine list is wrong. It is old. It’s out of date. The person is sick as hell in the emergency room and they don’t remember that their lisinopril dose was changed three weeks ago. One person in the room with the sick person and keep a notebook and write down what the physicians and nurses say, time, date. Then if they start contradicting each other, ASK.
5. In clinic
Give your doctor the whole list right away: my foot hurts, my chest is really bad when I try to run up the stairs, there’s this thing on my arm and is my cholesterol too high? Don’t discuss one thing in detail and then bring up the next. I have long visits, but I can’t do justice to that list in one visit and I have to prioritize. This requires negotiation: the chest pain has my attention. You may be focused on your foot, but the number one killer is heart, so your doctor will worry about your heart first.
If the doctor asks you to bring in all your pills, bring them all in. There are three different types of metoprolol and five strengths of each. Do you know the type and strength of every drug? I want to see your vitamin bottles because vitamin B1 can cause neuropathy from too high doses and yes, they can sell high doses. I want to see the supplements: why are you taking bovine thymus/testicle pills? By the way, if the doctor actually looks at the supplements, keep that doctor. Most don’t.
6. Be careful out there. Good luck.