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About Medical Records

If your child is “medically complex,” hundreds of pages of records will be generated about him or her each month or two.  Thanks to computerization, you won’t have to decipher the doctor’s handwriting and you will be able to read most of the records.


It may be useful to request copies of all records, so that as you go from one hospital or doctor to another you can explain what has been done.  Sometimes it is difficult for one doctor to get records from another.  Having the records sometimes prevents duplication of painful tests, or duplicate trials of treatments that previously didn’t work.


As you read the records, you will probably discover some obvious factual errors, some opinions treated as fact, and some statements that simply don’t make any sense.


Remember, as always, that doctors and nurses and everyone else in the hospital are regular humans working under tremendous stress on a rushed schedule.  Malpractice fears are endemic.  Therefore, a custom exists of masking bad news in the medical record.  Hospital workers in many countries, including the US,  have no special training in asking good questions or recording information well.  They are sometimes required to record information that they actually don’t have access to, or forgot to ask, and fabrication becomes the only way they can meet the standard.

One parent of a “medically complex” adult told us:

At first I was obsessed with getting the details right, and I spent an absurd amount of time correcting my son’s records.  After a few years I realized I didn’t have time to make all the corrections, and so I limited my effort to ten hours a month.  Now, after 30 years, I have just given up. I don’t know why it’s impossible for most doctors and nurses to keep good notes, but it is.


An accurate record is useful, and the best way to get it is to keep your own.  Even records of our daughter’s medications were sometimes flawed: 4 mg, 4mg per kilo or 40mg?  It’s a big difference but the record was unclear.   Some people ask every single time a medication is given for the details, and record it.  This is one way to help your child avoid an overdose, too.


Photographs are a quick way to record some kinds of history, like how a wound is healing, or how a certain kind of therapy is performed.  If you are allowed to, take pictures, and date them


Of course, you are so tired and worn down from the hospital experience that you may not be able to do this.  Forgive yourself and don’t worry about it.