When I took care of my Uncle John, there were many occasions when I had to take him to doctor appointments or the emergency room. I remember discussing Uncle’s medications with my brother John, who is a medical doctor. He suggested that I gather all the prescription medications and make a list with dosage. We discovered that Uncle John was taking two similar drugs with different names – one prescribed by an endocrinologist and another by his primary care doctor. Neither doctor was aware that the other had prescribed these drugs.
Later, I created a unique form for my use and for Uncle’s caregivers to track insulin injections, blood glucose readings, medication and meals. I put this daily form in with his medical records in a 3-ring binder with the Advance Directive and Power of Attorney. If I had to take him to the hospital or call an ambulance, I had his binder ready. On a few occasions, an EMT would ask to see the list of medications; and ER doctors asked to see a copy of his Advance Directive. Back then, what happened in the ER stayed in the ER. I’d have to share the same information again with the floor nurses once he was admitted.
Although these events were more than 12 years ago, you would expect that things have improved with medical record keeping. In many ways, they have. But despite the fact that many doctors use Epic, and many patients have access to MyChart, I discovered that not all doctors have access to all hospital records.
This year, an emergency hospitalization, I accessed my husband’s MyChart in order to link and view all hospital and doctor records. There was a huge disconnect, and I was surprised to learn that many doctors’ groups have their own portals, requiring patients to enter another a code to create yet another MyChart account.
After this recent episode, I went back to the 3-ring binder approach, downloaded all our test results, and categorized each binder section by bloodwork, CT-scans and MRI reports, medications, supplements, medical and dental insurance. I put the reports from the last two years in chronological order. I added a copy of the Advance Directive, sometimes referred to as a Living Will, Health Care Proxy, or Medical Power of Attorney.
I keep these binders in a safe place, where both of us know where to find it, and let our daughters know in case they ever have to step into the unexpected role of caregiver.
It’s up to you to be your own health care advocate and keep your family informed. You have, by law, the right to obtain copies of all your medical records, with the exception of psychotherapy providers’ notes. You could be charged for the mailing of records, but you cannot be denied copies of your records, even if you still owe payment to the doctor for previous service. Be aware that doctors and hospitals may only keep copies of older records for 6-7 years, depending on the state where you reside. Only you and your designated representative can obtain copies of records.
Consult an attorney in your state to update your will, your Durable Power of Attorney, and your Advance Directive. You should revise these documents as needed and at least every five years. You can view more information about HIPPA laws here: Your Medical Records | HHS.gov
Be prepared for an emergency. Organize your medical records for yourself, your spouse, your parent, or a friend who lives alone.
Medicare suggests:
When deciding how to organize medical paperwork for yourself or another as a caregiver, develop a system that works best for you and is easy to transport, store, and update. Consider using a three-ring binder or file folders. If you have the capability, make duplicate electronic copies of scanned or photographed documents and save them on your computer to mirror the organization of your paper files, or use a software tool made specifically for medical documents. The first page of your personal health record should include your name, date of birth, blood type, and a table of contents. How to Organize Your Medical Information in 5 Easy Steps | Medicare & Medicare Advantage Info, Help and Enrollment
For more organizational tips, view this article: Medical Records: Getting Organized | Johns Hopkins Medicine
- A family health history (particularly parents, siblings and grandparents)
- A personal health history (conditions, how they’re being treated and how well they’re controlled, as well as important past information such as surgeries, accidents and hospitalizations)
- Doctor visit summaries and notes
- Hospital discharge summaries
- Pharmacy printouts that accompanied prescribed medications. In a study of patients taking blood pressure drugs, about 40 percent were unable to name a single one of their medications.
- Test results (such as blood work, urine tests, X-rays, MRIs, bone density scans, mammograms and prostate screenings). If you or your loved ones have certain lab tests done regularly, a record will enable you to track changes from year to year and ask informed questions.
- Insurance forms related to medical treatment
- Legal documents such as a living will and medical power of attorney
I appreciate that this topic may be uncomfortable, and yes, it requires some time to assemble. However, it’s in our own best interest and the interest of our loved ones to have our binders ready to go.
♥ Susan L. Ward
Integrative Nutrition Health Coach