Think about the other caregivers who will see the patient after discharge. They benefit from having a discharge summary to review. Sure I’ll send a copy of the summary to the patient’s primary care doctor and to the cardiologist who consulted during the hospital stay. But what about the visiting nurse who will start seeing the patient the day after discharge? The patient can show the summary to the nurse instead of trying to recall what he was told about his illness and showing the nurse his pill bottles. Also, the patient may end up seeing doctors that I didn’t know about who won’t be getting a copy of the summary from me (my hospital). He may see other doctors in the community that he didn’t think to tell me about and can take a copy of the summary to those visits. This is why I usually tell patients to carry the summary around with them and show it to all the providers they see.
What about the patients with low health literacy? I think they might be the ones to benefit the most from getting the summary. A patient with low literacy may often get assistance from other and can show the report to these caregivers (often friends or family members). Not every patient will show the report to someone who can read it, but I think a lot of them will. So I think it’s worthwhile to give the report to everyone, just in case. If a patient is demented or otherwise incompetent, I try to get the summary into the hands of a family member or other caregiver. (Of course this can raise HIPAA-related privacy issues, and consent may be needed in some cases.)
I think that most lay people can make sense of most of what is in a discharge summary. As for the more challenging technical language in nearly every summary, sophisticated people can turn to the Internet for help. I want patients to have written reminders when they need things like a follow-up chest X-ray or results of tests that were pending at discharge. The need for specific follow-up like this gets reported directly to the PCP (via the copy of the discharge summary sent directly to him/her), and I hope that patients who have read the summary will help remind the PCP of these things.
There are two principle costs or barriers to making this standard practice. The first is that doctors tend to resist it. They worry that patients won’t understand the information or—worse—will become needlessly worried and stressed, and that the doctor will have to spend significant time “talking the patient down” from a worry that would never have arisen if the patient hadn’t been nosing around in a record that is written in “medicalese.” Or maybe the patient will read an unflattering portrayal of his situation and become angry at the doctor. (“He called me a drug seeker!”) Yet my experience shows that these are infrequent problems.
I can recall only one such incident out of the thousands of patients who have left my care with a copy of their discharge summary. One reason is that it’s now a habit for me to dictate each report while keeping in mind the idea that the patient is likely to read it. So instead of referring to a patient as a likely drug seeker, I’m apt to say something like “the patient had difficult pain management problems.” And isn’t this better language anyway? I might be wrong about his drug seeking, and any future provider who sees my report will probably still understand that drug seeking is a possibility. There are rare cases in which I think it is best not to automatically give the patient a copy of the report. These could include a proven unflattering diagnosis that the patient disputes. But remember, the patient may eventually end up seeing any report you create, so it’s worth keeping this in mind with all of your medical record documentation.