The next milestone in ICD therapy: Improving patient education

Jan 28, 2013 16:01 EST

If you implant internal cardiac defibrillators (ICDs) and you care about how well patients understand their devices, you will be disappointed in the results of a study released today in JAMA Internal Medicine.

Dr Roy Dodson and colleagues at Yale University set out to understand patient preferences for deactivation of ICDs. It's an important and timely topic, one that addresses (in my mind at least) the greatest risk of an ICD: the transforming of a peaceful painless death to one that is not.

High-voltage ICD shocks delivered in patients with advanced and debilitating diseases act to increase pain and prolong suffering. These are important outcomes to prevent. The best way to avoid this complication is deactivation of the ICD before it delivers a useless shock. This in turn means getting permission from patients to turn off the ICD shocks.

The problem that any real-world ICD doctor will attest to is that many patients don't want their ICDs shut off, regardless of comorbid conditions. As the Yale researchers tell us, this experience is backed up from surveys that show, even in setting of terrible diseases, people still value their ICD.

So why would a patient with advanced dementia, physical debilitation, or incurable cancer not want deactivation?

Dodson and coworkers study of 95 patients implanted with ICDs for a primary-prevention indication teach us that the issue is patient education.

In phone surveys, researchers asked patients two simple questions: "What do you feel are the potential benefits of your ICD?" and "What do you feel are the potential harms of your ICD?" Then, before asking about preferences on deactivation scenarios, patients were read a "standardized script" providing the best current evidence regarding the benefits and harms of the ICD.

I see four main findings:

• One in three patients could not name a single benefit of the ICD.
• Of those that listed ICD benefits, only 27% answered correctly—that the ICD was implanted to make them live longer. (We can give partial credit to 31% who answered, "restart the heart"; but 11% gave overtly incorrect answers.)
• Almost two-thirds of patients (61%) could not name a single harm from the ICD.
• After being read the standard script, 71% of patients wanted deactivation in one or more scenarios, although only 24% wanted deactivation if they were permanently unable to get out of bed.

 

These striking findings emphasize the need for improvement in patient education in ICD care.

How can a patient share in the decision to have an ICD (or deactivate it in appropriate settings) if they can't name a benefit or harm from the device? And of course patients will not want deactivation if they don't understand the device's mechanism of action.

The research team wrote that they believe that these findings " emphasize the importance of incorporating patient-centered outcomes in advance care planning for ICD patients."

I enthusiastically agree.

Having lived through the "irrational-exuberance" era of ICD implantation, I can't help but think: better late than never. The EP community must see these results as a wake-up call. Improving ICD therapy isn't just about technology and engineering. It's about patient education.

We are the teachers and our patients the students. It doesn't look good when most of our class fails a simple test. And it's not just about getting questions correct on a survey; it's about preventing complications and maximizing the good that we do with these complex and invasive machines.

A final word on realism: In fairness to regular doctors, a great barrier to improving patient education is the effect of healthcare reform. There is a paradox at work here. As intrusions to the patient-doctor relationship (EMR systems, precertifications, checklists, and mandated reviews of systems) collide with declining reimbursements for face time with patients, it becomes harder to fit the important stuff into a short office visit.

Perhaps studies like these will help pave the way for more widespread acceptance and financial support of a multidisciplined approach to patient education?

Let's hope for that.

JMM

See also Most ICD patients know when they'd choose device deactivation, survey says