October 2022 Communication Tip
Prognostic Awareness
Truly understanding one’s prognosis takes time for most.
Over time, clinicians can help patients cultivate “prognostic awareness” (a capacity to understand one’s prognosis and the likely illness trajectory).
In 2013, Vicki Jackson, MD, the Chief of Palliative Care at Massachusetts General Hospital, wrote a seminal paper with her colleagues about “the cultivation” of prognostic awareness (J of Palliative Care. 2013:16,894). The idea is for patients to truly and accurately understand their prognosis (and then make the best decisions for their care), patients must develop, over time, not just an accurate cognitive understanding, but also an open, realistic emotional understanding and acceptance of the prognostic estimate.
“Early in the course of illness” Jackson writes, “although most are provided with statistical information about their prognosis by their oncologist, many patients react to the information they have received in ways that leave them unable to make personal or medical decisions. Some patients react by not wanting to think or talk about their prognosis. Others feel the information does not apply to their situation or cognitively integrate the information but feel too emotionally burdened and decide to put off dealing with their mortality until a future point.”
Clinicians must recognize that it is normal to integrate serious prognostic information over time. This is a part of normal coping—letting the information sink-in, over time, and adjust. How much the patient has been told is key to know, but it is equally important to understand how well patients have been able to integrate what they’ve heard. It is typical for patients to need time (often, many visits) to integrate the information shared with them. It is not necessarily that the patient “just doesn’t get it.” It is more likely that they are requiring time to let it in and incorporate the information. We must expect that and accept it.
Denial is often an effective coping mechanism. It is an important coping mechanism and allows us all the protection we need to integrate harsh realities over time. Jackson summarized the work of psychiatrist Avery Weisman, noting that “denial is not a sign of unhealthy coping but rather a tool for patients to safely and slowly integrate the reality of death over time…. Patients move in and out of both denial and acceptance of impending death frequently and often in one conversation.” Weisman called this “middle knowledge.”
Jackson conceptualized middle knowledge as a swinging pendulum of awareness, swinging back and forth from integrated/realistic knowledge to less integrated/unrealistic understanding.
We clinicians must not be confused or frustrated by the swings in and out of denial, but rather recognize this as part of normal coping, a type of adaptive pacing. Patients can grow in their ability to integrate prognostic information, but along the way, clinicians must try to avoid being put off by the variability and the pace of change.
A patient’s need to use denial as a coping mechanism changes over time. Clinicians communicating well over time can help patients make incremental improvements in their ability to hear, accept, tolerate, and process their prognosis (and then patients can use this knowledge to make the best decisions for themselves). In their paper, Jackson and her colleagues go on to describe a step-wise approach to cultivating prognostic awareness in patients that “begins with the clinician determining the likely prognosis, then assessing the patient’s current understanding of the illness and inviting discussion of attainable hopes, and providing a place to grieve hopes that are likely unattainable.”
Ultimately, the opportunity is to begin to blend-in thinking about what is, for many initially, unthinkable. Gently, respectfully, compassionately, we can begin to ask scared patients to consider “What would it look like if you got sicker.”
All my best,
mike