How can a patient be sure that their doctor understands what he or she expects?
First and foremost, a “working relationship” between a doctor and patient requires communicating about the lived experience of illness beginning at diagnosis, through changes in health status and when weighing preferences for end of life care. Doctors are not mind readers so patients must recognize that it’s their responsibility to open channels of communication. However, in order to accomplish true patient-centered care, it can be helpful to have a healthcare communication framework that strengthens a patient’s understanding of risks and benefits of treatment options, which can result in a sense of control over decisions that will impact their life and that of loved ones.
So, in my first attempt to meet the challenge of bridging the healthcare communication gap, I developed Writing Is Good MedicineÒ. The program, based upon expressive writing principles, spotlighted questions and concerns about health status and treatment options. In addition, the exercises helped identify changes that illness often bring to one’s sense of self and relationships to others. By prompting patients to step back and reflect upon their illness experience, they could take actions that were meaningful and doable, which could bring authority and comfort when an unexpected and unwelcome interruption enters one’s life.
What does the research say? Writing works!
For over 40 years, clinicians and social scientists have been investigating ways in which writing promotes health and well-being. Studies show that writing about emotionally stressful experiences has been proven to reduce symptoms in activities of daily living. In clinical trials, patients in expressive writing groups experienced increased vigor, less overall sleep disturbance, better sleep quality and less daytime dysfunction. A close look at those who benefited most were patients whose processing words included “I realize,” “I understand” and “now I see that.” Insights like these help patients cope better and even lessen symptoms of depression, anxiety, fatigue and tension. You can say that writing about the lived experience of illness can enhance quality of life.
I find it worth noting that the authors of a National Cancer Institute report concluded, “Structured and content-based interventions are needed to ensure that critical aspects of the patient’s physical, psychological and spiritual experience are not excluded from care.”
Interventions like Writing is Good Medicine and now the widely available SpeakSoonerÒ: A Patient’s Guide to Difficult Conversations (speaksooner.org) provide a “structure to foster healthy communication.” Patients who understand risks and benefits of treatment options and express concerns to their healthcare team tend to make thoughtful decisions and have fewer regrets. As a patient told me, “I am left with a sense of ‘I can do this.’”
It is through an interactive process that patients learn what they can expect of their doctors. No one can be sure about the outcome of therapies for cancer or other serious illnesses but actively participating in making decisions about care and building a healthcare partnership are essential for minimizing unnecessary and regrettable consequences.