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Keeping Patients in the Loop


 

A few years ago, I cared for an unfortunate homeless patient who seemed incapable of managing his own affairs and was probably illiterate. When he left the hospital, I gave him a copy of his discharge summary and stressed that he should carry it around and always show it to anyone taking care of him. A lot went on in the hospital, and I worried he wouldn’t follow through with the subsequent care I had arranged and would instead wind up in another emergency department (ED) the next time he had a problem.

A few weeks later I got a call from another ED in the area and learned that the patient hadn’t been able to provide any meaningful details of his health history or where he had received care previously. But he did pull a wrinkled copy of the discharge summary from his pocket to show the staff. In our phone conversation, the ED doctor remarked how helpful it had been to have this information that he probably would have never found otherwise. It saved the need to pursue workup for things that I had already investigated.

Of course, a discharge summary can’t replace or reduce the need for the doctor to discuss diagnoses, treatment, and follow-up plans with the patient. But it is a great summary of the diagnoses, medications, and discharge instructions that the patient can review later. Research shows that many patients forget most of what they have been told by the time they get home, and my hope is that the discharge summary will serve as a reminder.

I tell this story because I think it would be great for hospitalists to ensure that all, or nearly all, of their patients receive a copy of their discharge summary as they leave the hospital—or soon thereafter. In fact, I suspect that if this became common for hospitalists, the idea might become de rigueur for all patients in the hospital.

I’ve been providing a copy for many of my patients for several years. I first started doing this for patients I cared for who lived out of my area (e.g., a different state) and I couldn’t rely on the hospital getting a copy of the summary to the patient’s primary care physician (PCP) at home. That experience convinced me it could be a good idea to give it to nearly all patients.

Giving each patient a copy of selected parts of the medical record and, when requested by patients, all of the medical record, is not a new idea. I think it is great that a number of clinics and other providers mail test results to patients, and neater still are the organizations that encourage patients to “visit our Web site to review your test results” and other such information. However routinely encouraging them to review all of the test results and other records generated during a hospital stay may be an idea that isn’t yet ready for prime time. Instead, I think it is useful to give the patient a copy of the discharge summary, which highlights relevant test results with accompanying explanation and analysis.

There are many reasons this can be a good idea. Of course, a discharge summary can’t replace or reduce the need for the doctor to discuss diagnoses, treatment, and follow-up plans with the patient. Still, it is a great summary of the diagnoses, medications, and discharge instructions that the patient can review later. Research shows that many patients forget most of what they have been told by the time they get home, and my hope is that the discharge summary will serve as a reminder.

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.

The second reason for resisting this idea is the perceived difficulty or cost of implementing it. I’m fortunate that most of my patients can get a paper copy of the discharge summary I’ve prepared as they are leaving the hospital. Of course, this requires that I dictate the report at the time of the discharge visit, and it is transcribed immediately. If you can’t pull this off, then I suggest that you have a copy mailed (or e-mailed if feasible) within a day or two of discharge. If the summary isn’t available when the patient is ready to leave, I wouldn’t have him stay and needlessly tie up a hospital bed. When this happens to my patients, I have them go ahead and leave, and a copy is mailed to them.

So I hope you will consider making this a routine practice in your hospital. The costs are small, and the potential benefit to quality of care and patient satisfaction could be significant. TH

Dr. Nelson has been a practicing hospitalist since 1988 and is a co-founder and past-president of SHM. He is a principal in Nelson/Flores Associates, a national hospitalist practice management consulting firm. This column represents his views and is not intended to reflect an official position of SHM.

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