Majority of Patients Don’t Understand Discharge Instructions

When your doctor discharges you from the hospital, the last thing you want is to end up back in the hospital. It makes sense that for the best outcome and to reduce your chances of a readmission, you need to follow your doctor’s instructions and understand what steps you must take for follow-up care. However, it turns out that the majority of patients don’t understand discharge instructions.

Why is it so important to understand your discharge instructions?

Importantly, you are vulnerable when you leave the hospital. Since most patients are still dealing with health issues after discharge from a hospital, there are many opportunities for problems to arise, including life threatening complications. In fact, almost 20% of patients experience an adverse event during this transition, nearly 3/4 of which could have been prevented or made better.

For example, adverse drug events, which can be caused by confusion over new medication regimens, are the most common complication after hospital discharge. Importantly, patients often receive new medications or have their medications changed while in the hospital. Additionally, hospital-acquired infections and complications from procedures cause a considerable number of deaths in patients recently discharged.

In addition to these dangers, almost 40% of patients leave the hospital while test results are still pending, and a similar percent are sent home with instructions to complete a diagnostic workup as an outpatient. In both of these scenarios, patients can be in danger if they do not receive timely follow-up.

Lastly, patients may face post-hospitalization syndrome, which can leave patients vulnerable to adverse events such as infections and falls.

Many patients don’t understand their discharge instructions.

Certainly, the transition from hospital to home is smoother if patients and families understand the discharge instructions. However, many patients go home without understanding important information about their hospital stay and transition to home. For instance, some patients might not understand their diagnosis, while others might not understand changes in medication regimens, and others might not understand what steps to take next. Without a clear understanding, patients have an increased risk of complications.

You may not believe this, but there is a chance you don’t understand your hospital discharge instructions as well as you think you do.

A study published in The American Journal of Surgery found that 65% of patients had functional reading skills that were at a grade level lower than the reading level of their discharge papers. Importantly, only 24% of the group had the reading skills necessary to fully understand the doctor’s summary and instructions.

The study also found that of the 40 people readmitted to the hospital within 30 days, 65% of them could not read at the required level to understand the doctor’s discharge papers.

Furthermore, a survey by The Leapfrog Group revealed that, on average, only 50% of people they clearly understood their transition to home.

Why do patients and families struggle to understand discharge instructions? 

Many patients lack the literacy skills to properly understand discharge instructions. According to the US Department of Education, 54% of US adults aged 16-74 – about 130 million people – lack proficiency in literacy, reading below the equivalent of a sixth-grade level.

However, high literacy might not be enough to help you! Importantly, doctors write discharge notes for other doctors, not just for patients and families. These notes are often full of medical jargon that is hard to understand in the best of circumstances.

Moreover, exhaustion, stress, and medications can make it harder for patients to understand discharge instructions. And families often feel overwhelmed and worried, which can impair their ability to concentrate.

Need more proof this issue may affect you?

A 2009 study published in Annals of Emergency Medicine evaluated patients’ understanding of 4 key issues as they were being discharged from the emergency department: diagnosis and cause; ED care; post-ED care; and return instructions. It turns out comprehension was quite low:

• 78% of the patients were not correct in at least one of these areas.
• 51% were incorrect in 2 or more areas.

Surprisingly, among the 78% who were incorrect about at least one issue, only 20% reported they felt unsure about how much they understood. The other 80% of this group were inappropriately confident about their mistaken understanding.

Language barriers compound the problem.

Of course, if the hospital provides discharge instructions in a language you do not fluently speak, it’s even harder to understand the proper next steps. To manage this communication gap, many US hospitals provide discharge instructions in other languages. However, the quality of the instructions may be significantly worse than those given in English.

For instance, a study of children’s hospitals found that 81% of the hospitals that responded have a written translation policy at their hospital. But, only 74% said they translate discharge instructions. Moreover, 87% reported they use pre-translated discharge instructions, which clearly may omit personalized instructions, although many also use staff interpreters when possible.

How can you make sure you understand discharge instructions?

I recommend you consider the following when the medical team is discharging you, or a loved one, from the hospital, emergency room, or day surgery. These tips are even helpful when finishing a doctor’s appointment:

• Don’t do this alone! If possible, have another responsible adult with you to go over discharge papers and instructions. This is particularly important if you are weak, exhausted, or recovering from anesthesia.
• Ask as many questions as you need until you are sure you understand what the doctor, nurse and/or discharge papers are stating.
• Write down every detail, no matter how small. There is a lot of information to process and it is easy to forget or get confused. If possible, record the conversation with your phone (ask first!).
• Repeat back a summary of what you heard and ask if you have the correct understanding of the information.
• If you will need someone to perform nursing tasks, such as changing catheters, using feeding tubes, or other potentially complicated tasks, make sure whomever will perform these tasks practices and feels comfortable — before discharge.
• Make sure you understand what symptoms and side effects warrant a phone call to the doctor or a trip to the emergency room. For example, ask about fevers, bleeding, signs of infections, etc.
• Make sure you know who to call, day or night, if something arises.
• Ask what follow-up appointments you should schedule. Importantly, get names and phone numbers. Make needed appointments as soon as possible upon arriving home.

My family’s story.

After my husband had minor surgery, he received discharge instructions while he was still under the influence of anesthesia. And they wouldn’t let me see him until they put him in the car to go home. Therefore, I never got the chance to ask questions about the discharge instructions.

Needless to say, my husband had no recollection of the conversations he had with the doctor and nurse. When the bleeding from his surgical site wouldn’t stop, I called the doctor. He reassured me that this kind of bleeding was normal.

If the written instructions were more clear, and/or I participated in the discharge conversation, we would not have worried unnecessarily. And I would not have interrupted the doctor during a busy work day.

Want to learn more?

For information on reducing the risk of complications after discharge, read my post Tips for Hospital Discharges.

NOTE: I updated this post on 4-29-24.