Patient Engagement

Decision-making on the Learning Curve

Being an engaged patient is a natural extension of my work in healthcare safety and quality, so when a friend was told he might need a coronary stent, I responded by searching for information and asking questions. I was glad to be able to help and to see my friend engaged in his care. In the end, the experience reminded me how challenging making decisions and influencing care can be, even in optimal conditions.

My friend is a good communicator, an engaged patient in his own right and has support and coaching from me. No doubt, all of that helped him receive good care, but it didn’t mean we learned everything we needed to know at the right time or managed to ask all the questions we would ask now if we had it to do-over.

A big deal by our standards

Having experienced brief episodes of shortness of breath and chest pain, my friend consulted his primary care physician and then a cardiologist. After some testing, the cardiologist recommended cardiac catheterization for further diagnosis and possible treatment, which might include a stent to keep an artery open or bypass surgery.

A few weeks later, I accompanied him to a Boston hospital for outpatient catheterization, angioplasty and the installation of a drug-eluting stent. He received excellent care and recovered quickly, with barely any visible sign of a medical event that was a big deal by our standards. A few hours later, moving through the mundane habits of a quiet evening at home, he said, “I feel like I just went in for an oil change.” Plumbing repair was the metaphor that came to my mind. We were grateful that invasive cardiac workups are now routine.

During the weeks before the procedure, as my friend talked with the cardiologist’s office, I recalled being aware of questions about the wide use of stents and reports of problems with the devices themselves. My friend’s PCP and cardiologist were understanding when, armed with articles from the New England Journal of Medicine, he asked questions about the benefits of coronary stenting vs. medication therapy.

My friend now wishes he’d asked a couple more questions and drilled down a little deeper about the choices he had. Having a drug-eluting stent means he must take a blood thinner for at least a year, with significant risk of a heart attack for noncompliance (my word, not theirs). Dependence on the blood thinner introduces a risk that was not discussed prior to the procedure, at least not explicitly or effectively.

It turns out, he may have been a good candidate for a bare-metal (vs. drug-eluting) stent, with which he’d have avoided the strict blood-thinner regimen. He plans to talk with his cardiologist about that at an upcoming follow-up visit, to understand better and inform the cardiologist that he wishes he’d understood better earlier. He now recognizes that he was focused primarily on addressing the blockage that caused him pain. The longer-term implications of which device was used didn’t seem as important at the time.

Continual learning

I wonder if I could have done more to coach him through the process. He and I learned a lot, but in the end, accepting the physician’s choice of stent seemed the only option. It may have been exactly the right thing to do, but we both experienced the decision-making process like a fast-moving train beyond our control.

As an engaged, informed patient – and advocate, in this case – I don’t always feel confident and fully satisfied while making my own medical decisions or coaching someone else. Being engaged and informed doesn’t mean decisions come easily. If anything, understanding that uncertainty is often part of the deal complicates decision-making.

This experience reminds me how difficult it can be for patients and their advocates to be full partners in medical decision-making. Sometimes, the science involved is complex or uncertain, making the physician’s expertise welcome and incontrovertible. Even in those cases, patients and their advocates must and can be informed and included. The degree to which they want to take an active role in decision-making will vary. In this case, we had good but incomplete information and accomplished, cooperative clinicians. And yet, we still feel we could have done better.

I know that patient engagement is an exercise in continual learning, always a work in progress, but it’s unsettling knowing that we’re making important decisions while still on the learning curve.


Susan Carr Susan Carr is a medical editor and writer specializing in patient safety and engagement. In addition to curating the EngagingPatients blog, she produces publications for the Betsy Lehman Center in Boston and the Society to Improve Diagnosis in Medicine. Susan lives and works in Lunenburg, Massachusetts.

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