Knowing When to Start, Knowing When to Stop

— Discussions about screening recommendations can be difficult, but they're worth having

 A photo of a young male physician in his office talking to his senior male patient
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    Fred Pelzman is an associate professor of medicine at Weill Cornell, and has been a practicing internist for nearly 30 years. He is medical director of Weill Cornell Internal Medicine Associates.

No matter what we do, there never seems to be a perfect answer. That's why they call it "the art of medicine."

Built into our electronic health record (EHR) are multiple best practice alerts, recommendations based on a patient's age, medical conditions, and other criteria.

Guidelines are collected and evaluated from multiple different organizations and societies, and a consensus is usually decided on by our institution as to when we should start suggesting things be tested for or screened for, and when we should consider stopping.

Well-Established Guidelines

When it comes to screening, this makes a lot of sense. There are well-established rules for what makes a good screening test that we should all be living by, although there are always exceptions. No guideline is perfect; every patient is different.

When we enter a patient's chart, based on who they are and what their medical conditions are, we may see recommendations for vaccines, cancer screenings, disease-specific testing, and more.

The recommendations on when to start are usually based on when it is reasonable to start screening or testing, and when the prevalence is high enough that screening whole populations of patients like this will be safe, effective, and economically sound. Here, for instance, is the recommendation from the for screening for cervical cancer:

"How often should I have cervical cancer screening and which tests should I have?

"Cervical cancer screening is an important part of women's healthcare. You should start having screening at age 21, regardless of when you first start having sex. How often you should have cervical cancer screening and which tests you should have depend on your age and health history:

  • Women who are 21 to 29 should have a Pap test alone every 3 years. HPV testing alone can be considered for women who are 25 to 29, but Pap tests are preferred.
  • Women who are 30 to 65 have three options for testing. They can have a Pap test and an HPV test (co-testing) every 5 years. They can have a Pap test alone every 3 years. Or they can have HPV testing alone every 5 years."

No Perfect Recommendations

I remember being told by many gynecologists that the fixed starting age was put into place because even if a woman reported that she had never been sexually active (and thus potentially not exposed to HPV), the fear was that some women, for a multitude of reasons, might not feel safe or comfortable reporting that they had been sexually active in the past.

But given that there are no perfect guidelines, and we are always discovering -- sometimes too late -- that the guidelines are wrong or misleading, very often we stray beyond the edges, go beyond the borders.

Recommendations from different organizations for breast cancer screening with mammography have multiple ages at which it's recommended to start screening, the intervals with which to screen, and when it's recommended to stop.

Just recently, recommendations were made to lower the age to start screening for colon cancer -- due in part to rising cases of colon cancer in younger and younger people -- from 50 to 45 for most populations, but even this may someday prove to be not soon enough.

And how often to screen after a colonoscopy, depending on the number, size, and types of polyps found, seems to be an ever-changing science, and one we'd hate to be wrong about. It's a bit of a wild, wild West.

Many of the guidelines from professional societies recommend having discussions with patients about when to stop screening for certain things, based on their comorbid medical conditions, the patient's and their family's preferences, and their life expectancies.

This makes an enormous amount of sense, and if this is done well, with a fully engaged patient and their families, it can prevent a lot of harm from being done.

Far too often, we've seen patients screened far too late in life, sometimes even without their knowledge of what they were having done, or even actively against their wishes, and they end up having to have invasive procedures such as surgery or chemotherapy for something that probably wasn't going to impact their quality of life or their life expectancy.

Figuring Out What's Best

Since we promised to do no harm, we need to find a way to do what's best for each patient, to make sure that we are looking at them as a whole, not just as a number that meets a guideline's thresholds for starting or stopping.

This conversation, that perhaps it's time to stop screening for certain things, can often be a difficult conversation, but is almost always a rewarding one.

I love telling my really healthy vital older patients, who the EHR has told them that it's time to stop doing something like colon cancer screening, that I think we should reconsider, that they seem to have so many good years ahead of them that continuing on might make a lot of sense.

And for patients who question this message, when the EHR told them they no longer need a mammogram or PSA test, sometimes this leads to really healthy discussions about what they want to plan for their remaining time, how to rethink their later years in a healthy way.

Someone once said that as long as you stick with the guidelines, you're "protected" from someone later saying you missed an opportunity to prevent the disease.

While this is important, and the need for good documentation to support your medical decision-making to start and stop screening should always be there, engaging the patient and their family so that everyone knows what's going on is critical to having everything go right.

We've all seen cases where this has gone wrong, in both directions, either stopping screening when someone later claimed they didn't want to stop, or continuing screening that probably shouldn't have been done and then having a patient be subjected to probably unnecessary harms.

The bandwidth and the time to go over everything with patients -- all of these different guidelines and recommendations with patients, and their implications for their long-term health and outcomes later in life -- is probably more than any of us have to give, especially in a 20-minute office visit full of multiple issues and other competing priorities.

Maybe by creating really useful educational modules that help explain this to patients, and providing them with counselors and other resources that can clearly go over all of the information and the reasons for and against doing a certain test or procedure, for stopping it or starting it, we can move towards the best way to make sure that everything goes right for our patients.

Don't get me started. Stop me if you've heard this before.