I was both pleased and relieved to read “Shifting to Serious Illness Communication,” an article recently published in the Journal of the American Medical Association (January 7, 2022). Drs Juliette Jacobsen, Rachelle Bernacki, and Joanna Paladino reference a recent study that showed the shortcomings of advance care planning as an accurate predictor of end of life care decisions. In light of the findings, the authors advocate for a communication intervention to “ensure that patients and families feel respected and supported, and retain a sense of purpose and control despite living with the uncertainties of serious illness.”
In addition, they note, “Although facing challenging circumstances, patients who have engaged in serious illness communication can better understand difficult prognostic information, recalibrate hopes and priorities, and, when the time comes, make medical decisions consistent with their values.” The authors emphasize the need for ongoing structured patient-centered conversations throughout the course of illness.
For me, this is a welcome perspective and reflects an approach to healthcare communication that was at the core of my role as a medical humanist at Southwestern Vermont Regional Cancer Center (2003-05). Through this work I learned the importance of helping patients to focus attention on identifying questions and concerns about their diagnosis, prognosis, treatment plan, supportive care needs and how illness was affecting themselves and their loved ones. This intervention prompted self-reflection and helped patients prepare themselves for discussing these topics with their oncologist, a process oriented approach beginning at diagnosis and continuing through the course of illness. My medical humanist note documented the patient’s responses, which was included in the medical record so it could be available to all the cancer care staff.
The medical humanist intervention model and subsequently SpeakSooner: A Patient’s Guide to Difficult Conversations were designed to prompt patients to identify their questions and concerns prior to meetings with physicians. Based on what I’ve been told by patients, “being prepared” did not necessarily make difficult conversations easier but served to clarify issues that were meaningful to them. As a result, I have observed that patients who open channels of communication often have more candid conversations about health status, risks and benefits of treatment options and quality of life issues.
The article’s authors conclude, “By guiding decision-making based on patients’ understanding of illness and their priorities, clinicians provide personalized medical care and emotional support that is highly valued by patients.”
Of course, physicians should listen to and thoughtfully consider patients’ priorities but what I’ve come to learn is the importance of those who are facing serious illness initiating conversations about health status and planning of care, which sends a powerful message about wanting to be actively engaged in decision-making. Whose life is it anyway?
With the authors calling for new serious illness communication interventions, I can envision a model where physicians, nurses, social workers and chaplains use SpeakSooner: A Patient’s Guide to Difficult Conversations as a tool to prepare both patients and their loved ones to identify and communicate questions and concerns, which would offer treating clinicians valuable insights into what a person living with serious illness is ready to hear and discuss. To be sure, this intervention empowers patients to place themselves at the center of care.