Adrienne Barnes, a nurse diagnosed with pancreatic cancer, was featured in “Voices From The Lived World of Illness,” a video produced by the Center for Communication in Medicine. During the interview she shared her frustrations when her doctor tells her “there’s really nothing I can do for you.” She was then asked what would be the best way for doctors to understand the importance of timely and compassionate communication about patients’ concerns. Adrienne replied, “Get sick.”
Dr. Marie Archambault Carlson, an internist at the Durham (NC) VA Medical Center, offers a personal account of living with debilitating side effects from cancer treatment in the Journal of the American Medical Association article “You Did Not Teach Me What You Thought You Did.” She shares how this experience has influenced her perspective about life and as a physician caring for patients.
“Sometimes the battered, suffering patient with a poor prognosis can rise again, not fully cured, but enough to regain a life. It is letting my colleagues see my weakness, see my value, and hold me up. Perhaps my job is not teaching pathophysiology but how to think about the person inside of patients, to recognize their fears and questions, to link their humanity to ours.”
There is something paradoxical about doctors and nurses being patients. Perhaps, that is why it is so compelling to hear their stories about what it’s like on the other side of the hospital bed. With this in mind, several SpeakSooner® Community Education Programs over the past 18 months featured panel discussions with healthcare providers who have faced serious illness. The panelists often talked about feeling scared and overwhelmed with difficulty navigating the healthcare system, even though they’re familiar with language and procedures inherent in the medical world. Like other patients, they were looking for a doctor to care for them with compassion.
I certainly don’t believe that healthcare professionals being diagnosed with a life-threatening illness is the answer for prompting open and honest communication. However, I do believe that our responsibility as patients is to remind those who are imparting medical advice about the lived experience of illness. We need to ask questions and invite them into conversations about worrisome issues and concerns. As Dr. Carlson suggests, these personal accounts can help doctors understand and consider the “person inside the patient.”
Adrienne also talked about what she was looking for from her doctors. She said, “I was looking for a medical companion that could say we can do this. This is a really bad disease but you’re young— link arms with me and my husband—and tell us ‘there’s lots of stuff out there we don’t know about and see what we can do.’”
Is that asking too much?