Originally published: Association of Patient Experience
Carly is getting jaw surgery later this month. According to her doctor and to Google, the procedure is minor. She can find videos of the procedure, list after list of exercises to do during recovery, conflicting information about how quickly she will be able to eat normally, and a few scientific papers on the efficacy of the procedure.
As an MPH and health communications expert, she’s struck by how little there is about pain, recovery, and the overall experience she’s about to face. What lies ahead of her is more than just the two hour outpatient procedure, but almost all of the information ignores what the next few months will be like for her.
- How long until she can open her mouth again?
- Can she drink with a straw? Can she sleep on her side?
- What’s this going to feel like post-op? How about in 4 weeks?
- What does she need to know in order to have the easiest possible recovery?
- What is the actual experience like?
As someone in the health field, it is startling to feel so stuck. So what about people who don’t have the same background and access to resources?
It’s human nature to find comfort in an understanding of what to expect. For a patient, a lot goes into making a medical decision and into mentally preparing for a test or treatment. And our expectations color our experience almost as much as the experience itself.
Even though clinicians have great insights, if they haven’t gone through it, there’s only a partial understanding of the lived realities. Interestingly, as patients become more and more active in their care, they have higher expectations of the care that they will receive.
One way to get insight into each patient’s expectations is to simply ask people what they expect or ask them to write it down before your next conversation. Many people may not realize they even have expectations until they’re asked to verbalize or write them.Then dialogue with them to ensure their expectations are realistic. Patients don’t always feel they have the time or enough of their doctors’ attention to ask questions that are burning in their minds.
There’s no replacement for the empathy created by experience. An bronchologist who had been practicing and teaching for years agreed to volunteer as a practice bronchoscopy patient. Going through a bronchoscopy forever changed the way he now describes it to patients. Clinicians often can’t and don’t need to go that far. But to understand the realities of a procedure or health condition, take a couple minutes to ask patients to help you help future patients. After they’ve been through a procedure and recovery or have been living with a health condition for a while simply ask:
- What was/is the experience like?
- Did anything surprise them?
- What do they wish they’d known or done differently?
In fact, sometimes the most important expectations to set aren’t physical. When creating a multimedia program to set expectations for patients and families going home with a left ventricular assist device (LVAD), one of the most important things we heard from patients was how it can change someone’s identity -- especially if it affects their ability to work, or limits activities like basketball with friends. But knowing these changes can affect their identity can normalize it and help families prepare for it. You can see a short clip here:
But without experiential information, patients often turn to Dr. Google. There’s some good information out there, but wading through it is often overwhelming or a trip down rabbit holes. Patient groups and peer forums can be helpful - but it’s not uncommon to run into people who had especially bad experiences and want to sound the alarm or people who had especially good experiences and want to evangelize.
Building an experience library
Clinicians are sitting on a goldmine of experiential information that could help patients both understand what’s to come and avoid the Google trap. By asking questions of their patients and building an experience library, they can gain valuable insights to help set realistic expectations for others and provide effective patient engagement. This library will not only empower the patients by providing them clarity on the experience they are about to have, but it will empower physicians, who will now be able to describe patient experiences with insights and details unavailable to them before.
Carly Thanhouser, MPH is a behavioral scientist and health communications expert with a background in Health Behavior Health Education and Quantitative Methods. She currently focuses on applying innovative strategies to bridge the gap between research on health and wellness and the real world.
Geri Lynn Baumblatt is the Executive Director of Patient Engagement at Emmi. She is on the board of the Journal of Patient Experience, a regular contributor to the Association for Patient Experience, and regularly participates in health literacy and shared decision making, patient engagement and experience conferences at organizations like AHRQ, the Brookings Institute, the Society for Medical Decision Making, the Beryl Institute, Stanford Medicine X, and the Center for Plain Language. Catch her in October at MedCity Engage, HARC, and the Partners Connected Health Symposium.