As I go through papers stacked on my office shelves, I heed Virginia Woolf’s words about paying attention to the “diamonds in the dustheap.” Just the other day I found a questionnaire used at a 2016 workshop that we organized to provide feedback on the original Difficult Conversations Workbook. Although the workbook was generally well-received by patients and healthcare providers, we wanted to know if it could be improved upon.
We invited physicians, nurses, mental health professionals, patients and loved ones to the workshop. Although open to suggestions, I must admit that I was also sensitive to what could feel like criticism of my work. The participants did what they were asked. They made it known that the workbook was well written but lengthy, noting that health literacy was a factor to consider in revising the content. Their comments also helped me realize that I missed the obvious in that seriously ill patients are often physically and emotionally compromised and have difficulty concentrating and absorbing a lot of information. They suggested that I use simple language that would make the content easier to understand.
The feedback led to a revision of the workbook. I removed large sections of the preface and fine-tuned the content of chapters. I changed language to meet health literacy criteria. What resulted was SpeakSooner: A Patient’s Guide to Difficult Conversations, which uses brief statements to introduce each chapter topic and simple questions that serve as prompts to help patients identify and communicate issues and concerns to healthcare providers and loved ones.
Let me provide an example of a revision in the chapter on “Understanding Your Choices.” Rather than introducing this topic with a descriptive paragraph using numerous patient quotes, the chapter begins with a simple statement, “Communicating your needs, preferences and goals makes it possible for your providers and support network to understand the reasons for your decisions.” This is followed by questions that include “What defines quality of life for you,” “What influences your treatment decisions?” and “Who influences your decisions?” What’s important here is to help patients think about their choices, clarify goals of care and be prepared to open conversations with healthcare providers about their health status and risks and benefits of treatment options.
I’m grateful to those who attended the workshop and offered suggestions to improve the original workbook. We’re finding that the revised SpeakSooner guide is user friendly and very effective in leading patients to ask questions and express concerns.
By the way, for the workshop feedback questionnaire we borrowed a quote from Kitchen Table Wisdom, written by physician Rachel Naomi Remen. Dr Remen said, “The most important questions don’t seem to have ready answers, but the questions themselves have a healing power once they are shared.” I couldn’t agree with her more.