When the truth (literally) hurts

As a primary care internist, I’m often reminded that one of our biggest contributions to our patients is to act as interpreter. In this role, we interpret not from a native language to English, but rather from the technical language of medicine to words patients can understand. Our translation can change the way they approach an illness or decide on a course of treatment.

I’ve often encountered patients after a procedure who start our visit with, “Doc, I wish they’d told me what to expect.” Whether following a diagnostic study, stay in rehabilitation, joint replacement, or open-heart surgery, patients often wish they’d known more. They wish the process of  informed consent had been more about being informed and less about being just consenting.

Patients will occasionally tell me they’re glad they didn’t know the details of what they’d experience prior to undergoing a procedure. They’ll say, “If I’d known what this would be like, I’d never have gone through with it.” However, in my experience, that reaction is uncommon.

More often, patients will express disappointment that their surgeon didn’t tell them of the degree of pain and the experience of recovery following a major (or even minor) procedure. They didn’t like the surprise of experiencing things for which they weren’t forewarned. They express anger at the doctor who performed the procedure and sometimes will admit to loss of trust because they feel they’d been misled. 

So what can we do to help patients facing interventions? The following can help guide us:

1. Urge patients to have forthright discussions with the doctors who will perform their procedure.
Encourage them to think about the questions they want to ask before their visit, and to write them down so they don’t forget them.

2. Ask patients what their understanding is of the procedure they’re about to have, and also their understanding of the reasons why they need the procedure. 

3. Keep patients at the center of the discussion. Their goals and needs should guide the conversation.
Be available to facilitate conversations between surgeons and other proceduralists and patients. Following such discussions, I’ve often received words of gratitude from everyone involved.

4. Ask patients “How much do you want to know about what to expect? What will help you most to prepare for what’s to come?” 

While we may not be the physician wielding the scalpel or performing the biopsy, our role in shepherding patients through procedures and tests is invaluable and built upon a trusting patient-doctor relationship. 

This piece expresses the views solely of the author. It does not necessarily represent the views of any organization, including Johns Hopkins Medicine.