During my tenure as a medical humanist at a cancer center in Vermont, I was an eyewitness to the challenges that patients and healthcare providers faced in communicating about serious illness. What I learned became source material for the Center for Communication in Medicine’s (CCM) programs and tools to improve healthcare communication. Although the educational resources were aimed to help patients identify and voice their questions and concerns, I also recognized that its content could be adapted to help clinicians improve communication with those they care for.
To articulate how patient-centered materials could be adapted as a teaching tool for healthcare providers, Bernard Bandman, PhD, Nathan Pennell, MD, Lidia Schapira, MD and I co-authored “Patients as Real Time Teachers,” which was published in the Journal of Cancer Education (2007). The article described how our Voices from The Lived World of Illness video was developed into a medical education guide. This project was a collaboration between CCM and Drs. Pennell and Schapira.
The introduction to the Voices From The Lived World of Illness Guide (2006) described a conundrum in the training of doctors by stating, “Caring for patients with cancer is a challenging and rewarding task, both intellectually and emotionally. Modern medical education is very good at teaching the technical aspects of diagnosis and treatment but there are equally important aspects of patient care that cannot be gleaned from a textbook or a lecture.”
To emphasize the importance of the patient’s perspective in planning of care the introduction also noted “As we listen to their stories and the recurrent themes in the lives of four patients with incurable cancer, we hear what is often unspoken and see how patients can become the real time teachers of those of us who care for them.”
The medical education guide was designed so clinicians would view videos of actual patients describing their lived experiences of illness and then be asked questions about how these issues were addressed in their medical practice. For example, after viewing a video in which patients talked about the unfamiliar language of medicine, they were asked, “How can you be sure that patients hear, understand and remember important information?” This question was aimed at recognizing misunderstandings and could also offer insight into a patient’s health literacy level.
In summarizing the purpose of the guide, we concluded, “This video and medical education guide can help to bridge the communication gap between physician and patient in the decision-making process throughout the disease trajectory and, most importantly, at the end of life.”
I learned that tools to help patients identify and communicate their questions and concerns could also be used for training exercises to help providers improve listening and communication skills about hard-to-talk about healthcare issues. It is not lost on me how my medical humanist’s notes documenting the patient’s perspective were the original tool to prompt conversations about difficult topics.
On these pages I’ve often referenced SpeakSooner: A Patient’s Guide to Difficult Conversations, a tool I created to help patients identify and communicate questions and concerns. CCM has now developed a training program for healthcare professionals based upon this material. It is my hope that by patients and healthcare providers becoming familiar with and discussing the topics in the SpeakSooner guide, they can end up on the same page in planning of care.