Then and Now

As I think of Virginia Wolf looking for “diamonds in the dustheap,” I dig through piles of materials that sit not far from my desk.

 

What I recently found was an Associated Press story published February 3, 2003 titled “Institute Emphasizes Human Side of Medicine,” which describes a program that I developed to facilitate doctor-patient communication at a cancer center in Bennington, VT. I’m quoted as saying, “The language of medicine and the language of the patient’s lived world of illness are not the same” and highlights my role in “bridging the communication gap between the patient’s experience of illness and the doctor’s approach to care.”

 

I think about what I learned from patients, families and clinicians. Each faces challenges in communicating with one another about issues surrounding a serious diagnosis, prognosis and making decisions about care. When that program ended in 2005 due to budgetary considerations, I hoped there would be an opportunity to partner with another cancer center to implement what patient surveys indicated was a very successful intervention. It turned out more difficult than I thought. I would hear enthusiasm from cancer clinicians at other locations about the need to improve communication but told that hospital administrators would not allocate funds or staff to implement the program.

 

With the communication model was no longer located in a medical setting, I decided to create SpeakSooner: A Patient’s Guide to Difficult Conversations, a communication tool based on my work. By using the guide, patients could identify questions and concerns in preparation for office visits. At that point in time, we were relying on news stories, social media and community education programs for patients and families to learn about the guide’s availability on our website. Yet, there was no giving up on finding a home at a cancer center for our SpeakSooner model.

 

Then, in 2021, Dr. Eric Pillemer, the oncologist who opened the door to an innovative communication model at the Bennington cancer center, was serving as medical director of the Merrill Oncology Center at Adirondack Health in Saranac Lake, NY. When Sara Ames, an oncology nurse practitioner, was talking with him about a quality-of-care initiative being rolled out in their healthcare system, the conversation turned to health literacy and the importance of effective clinician-patient communication. Dr. Pillemer told her about the program in Bennington and introduced us. As they say, the rest is history.

 

It has taken many years for us to form another partnership with a healthcare institution but a communication model based on SpeakSooner: A Patient’s Guide to Difficult Conversations is now being integrated into cancer care at Adirondack Health. This time, however, a team is doing what one person did at the Bennington cancer center. The practice’s clinicians have been trained in the use of the SpeakSooner Guide, empowering patients to ask questions and express concerns about difficult topics, including prognosis and risks and benefits of treatment options. As a result, patients are helping clinicians understand what they are ready to talk about, leading to meaningful conversations surrounding planning of care. I am humbled by the success of the program at Adirondack Health. And, the guide is still available for free at speaksooner.org. As my mother would say, “If you live long enough…”