20 Years Later

It’s a new year but I find myself reflecting on times past. So much for the lyrics of Auld Lang Syne, “Should old acquaintance be forgot and never brought to mind.”

What catapulted me back in time was a recent article in the Journal of The American Medical Association (JAMA) that highlighted the patient’s perspective of illness. I found myself back in 1999 thinking about when I was unexpectedly invited to join the staff of Southwestern Vermont Regional Cancer Center as a patient navigator. I had no experience in the world of medicine but, like writers do, I observed doctor-patient interactions, listened to patients’ stories and read the medical record.

Over the next 2 years I observed how a communication gap between doctors and patients could have an effect on making informed decisions about care. These observations helped prepare me to create and implement the role of medical humanist, in which I documented the patients’ understanding of their diagnosis, prognosis, treatment plan and concerns that may not have discussed at the visit with their oncologist. My note was included in the medical record.

When I asked one patient about what she would have liked to talk about with her doctor, she was quick to say, “I want my doctor to understand what my quality of life means to me.” In another instance, a doctor reviewed my note and claimed, “They never told me that.” The intention of my note was to help facilitate communication between doctor and patient about what may have been misunderstood or unspoken at the office visit.

The JAMA article (January 2, 2020) has the cumbersome title of “Adding Patient-Reported Outcomes to Medicare’s Oncology Value-Based Model.” To my surprise, the authors confirmed what so many have said– the medical humanist model I implemented 20 years ago was ahead of its time. The article refers to the Centers for Medicare & Medicaid Services Innovation Center (CMS) study for improving quality of care for cancer patients. Without getting too deep in the weeds of the findings, what stood out was the importance of firsthand patient-reported outcomes about the effects of chemotherapy, i.e. physical, psychological, quality of life. Communication issues with providers were also documented. It’s worth noting that when patient generated information is delivered to providers in a timely fashion, there is improved symptom detection and control, quality of life and communication as well as increased satisfaction with care. In addition, there were fewer emergency room and hospital visits, lowered healthcare costs and improved overall survival.

The article notes that funding for these innovative programs can be an obstacle, as it was when my medical humanist position was terminated in 2005. So, it remains to be seen if patients, who are the real experts about their experience, will have a new communication platform. I must admit that it’s gratifying to see that core components of the model I created in Vermont are gaining traction at a national level.

Whether or not the CMS’s patient-reported outcomes model is implemented in the near future, the Center for Communication in Medicine will continue to offer SpeakSoonerâ programs and tools to prepare patients to identify and articulate needs and concerns. Now, we have data from the CMS study that shows timely and clear communication can lead to reduced treatment side effects, improved quality of life and lower healthcare costs, which is what we observed long ago.

You can say that I have been heeding the advice of Dr. Herb Maurer, an oncologist from my time at the cancer center, who told me, “Go give them some humanism.”


(3) Comments

  1. Kathleen McBeth

    Always enlightening to read and to see how innovative you have been. Patient’s experience needs to be heard and valued. thank you, Kathy

  2. Joe O’Donnell

    Beautiful piece! The world needs to catch up with you!

    Well done!

  3. Shelley Pazer

    Insightful, meaningful and clear-cut. Most upsetting to me is that lack of funding is holding back this crucial work. Things seem so upside down sometimes

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