In a 1988 Village Voice article “The Land of The Sick,” Paul Cowan spoke of his experience of illness and declared, “It is a world that has its own language, its own geography, its own authority figures and its own calendar dictated by the changes in one’s body or by results of medical tests–most of all its own emotional demands.”
Most of us live with the awareness that life is a random affair in which we have only so much control. This knowledge is usually pushed safely to the back of our minds until a serious diagnosis or other life crisis brings it to the fore. In my work as a medical humanist, I’ve witnessed patients and families startled out of the security of good health and unexpectedly thrust into a world where there are no recognizable guideposts to help navigate what it is uncharted territory.
Although those with health literacy issues face greater challenges in navigating the healthcare system, I have come to learn that regardless of one’s education, occupation or socio-economic status, it can be an overwhelming challenge to fully comprehend the language of medicine. You may be surprised what Apple Computer founder Steve Jobs said in his address to the 2005 graduating class at Stanford University. He confessed, “A few years ago I was diagnosed with cancer. I had a scan and it clearly showed a tumor on my pancreas. I didn’t even know what a pancreas was.”
I also recall that during a panel discussion at the November 2, 2022 SpeakSooner Community Education Program “Illness Is Tough on Everyone: How Do We Talk About It,” Col. James Baker, a former Director of the Vermont State Police, talked about feeling overwhelmed by his cancer diagnosis and not fully understanding what would be the best treatment options available. He felt lost until a physician friend opened the door to a well-known cancer hospital, which allowed him access to new treatments that would have not been available to him at community cancer centers. He acknowledged that privilege probably saved his life.
Although Col. Baker was grateful for an opportunity to receive cutting-edge care, there was still a breakdown in communication with a doctor that led to unnecessary pain and emotional distress. Even with connections that opened the door, his repeated calls for help were not returned. Weeks later he communicated his disappointment in a face-to-face visit with the doctor. His suffering was acknowledged with an apology and promise that the breakdown in communication would not happen again.
Even those of educational and socio-economic privilege like Jim Baker, Paul Cowan and Steve Jobs can face challenges with medical language and communication. Yet, we must not lose sight of how much more overwhelming it can be for those who struggle with health literacy to navigate the healthcare system. I can’t solve the problem of the healthcare access inequities. However, in developing SpeakSooner: A Patient’s Guide to Difficult Conversations, I intentionally used language that takes into account health literacy issues. By helping patients identify and communicate their questions and concerns, it was my hope that the guide would open conversations about what may have been misunderstood so that healthcare providers could offer clarifying information and advice. In doing so, guideposts could be established for the emotionally demanding task of weighing options in planning of care.