How to remember what the doctor said

You remember a doctor's appointment by deciding beforehand what you need to leave with, saying the plan back before you stand up, and writing it down the same day. Memory alone is not enough, and the part most likely to go missing is the instructions.

How much of a doctor's appointment do people forget?

People forget a large share of what a doctor tells them, and some of what they do remember is wrong. A 2003 review in the Journal of the Royal Society of Medicine put it this way: "40-80% of medical information provided by healthcare practitioners is forgotten immediately," and "almost half of the information that is remembered is incorrect."

The review is more than twenty years old and summarizes earlier studies, so treat the range as rough. Its conclusion is more useful than the number: patients "tend to focus on diagnosis-related information and fail to register instructions on treatment," and spoken information "should be supported with written or visual material."

So the thing to protect is the instructions: what changed, what happens next and who is doing it.

What should you do before the appointment?

Before the appointment, write your questions down and put them in order. The National Institute on Aging (NIA) says to ask about the most important ones first and not to leave what is really on your mind until the end. The US Agency for Healthcare Research and Quality (AHRQ) asks the same thing on its appointment tips page: what are the top three questions you want to be sure to ask?

A public tool builds the list for you: AHRQ's QuestionBuilder app.

Then pack what you will be asked for. NIA suggests a list of everything the person takes with the doses, insurance cards, and the names and phone numbers of their other doctors. Our guide to organizing a family's medical records covers where to keep them.

What should you do during the appointment?

During the appointment, do four things: ask when you lose the thread, say the plan back, bring a second person to take notes, and leave with something in writing.

Ask at the moment you don't understand. NIA's advice is that if you don't ask, the doctor "may assume you already know the answer or that you don't want more information." Its example of unclear instructions: does taking a medicine with food mean before, during or after a meal?

Say it back. Clinicians call this teach-back. AHRQ describes it as "asking patients to state in their own words what they need to know or do about their health." The same guidance tells clinicians that "Do you understand?" is not a teach-back question, because patients "are likely to answer 'yes' whether they understand or not." You don't have to wait to be asked. Try:

"Can I say that back to make sure I have it? What's changing is… This week we need to… We come back on… Have I got that right?"

One question AHRQ suggests clinicians ask is "When you get home, what will you tell your partner about this visit?" Answer it out loud before you leave, whether or not anyone asks.

Bring someone. NIA says a companion "can take notes for you and can help you remember what the doctor said." It adds a caution: the visit is between the patient and the doctor, so tell your companion beforehand how they can be most helpful.

Ask for it in writing. MedlinePlus says to ask for written instructions if you need them. NIA suggests asking the doctor to write down how often and for how long a medicine should be taken, and asking for a written copy of test results.

Can you record a doctor's appointment?

You can record a doctor's appointment when everyone in the room agrees and the clinic allows it. Ask before you press record, in a sentence that says why and who will hear it:

"Would it be alright if I record this? I want to make sure I remember everything properly and can share it with my family."

If the appointment is someone else's, ask them as well, and ask anyone who joins partway through. If anyone says no, or changes their mind, don't record. Take notes, and ask whether the doctor can give you a written summary of what was agreed.

The law depends on which state you are in. What follows is a summary of what others have published. It is not legal advice, and it may be out of date.

Federal law requires the consent of at least one party to the conversation, and states may set stricter rules. The Reporters Committee for Freedom of the Press, which keeps a state-by-state guide for journalists, counts about 11 states that primarily require the consent of all parties, and four more that require it for either in-person conversations or phone calls.

A hospital or clinic can also have its own policy against recording, whatever the law allows. Lifelong's Recording Consent Notice sets out the rule we ask everyone to follow: ask, and don't record if anyone says no.

What Lifelong does with a recording

Lifelong records an appointment of up to 60 minutes on an iPhone. When you stop, it produces a transcript, an AI summary and a list of suggested follow-ups, and saves them to the record of the person the appointment was about. That person's sharing settings decide who in the family can see it. The audio is deleted once the transcript is confirmed.

Use the transcript and the summary as a memory aid alongside the written instructions you were given, and confirm doses and dates with the clinic. The FAQ covers what happens to the audio.

What should you write down the same day?

Write up the appointment the same day, while two people can still check each other. Copy from the paper you were given wherever you can. A short template:

• Date, who was seen, which doctor and clinic, and who else was in the room
• Why we went, in one line
• What the doctor said, in their words where we have them
• What changed: anything started, stopped or altered, copied from the written instructions
• Tests and referrals: who books them, how the results arrive, and when
• What the doctor said to watch for, and the number they said to call
• Next appointment: date, time, and who is going
• Questions we didn't get to
• Not sure about: anything two of us remember differently, to check with the clinic

If you are unsure of a dose or a date, write that you are unsure and call the clinic or the pharmacist. A guess written down neatly looks like a fact to the next person who reads it.

Who in the family needs to be told?

Tell everyone who would act on the information, on the same day, in one place they can find again. That means the person who was seen, anyone who gives them their medicines or drives them to appointments, and whoever would be called in an emergency. Share only what the person whose appointment it was is happy to share.

Lifelong was shaped by in-depth interviews with more than 85 families. One thing I kept hearing about was contradiction: a medication list from the hospital, another from the primary care doctor, a third from the specialist, and the three don't agree. The family is the only party that can see all three.

A same-day write-up keeps a family from adding a fourth version. At the end of an appointment day I would ask who else in the family knows what was said. If the answer is nobody, send the write-up before you do anything else. The guide to caring for a parent with your family covers how siblings divide the rest.