Understanding Your Prognosis

Until it becomes something a patient must think about firsthand, the word “prognosis” can seem unfamiliar, even abstract. Many patients feel uncertain about what their prognosis actually means, even after speaking to doctors.

 

In the Difficult Conversations video, produced by the Center for Communication in Medicine, Laura says that she didn’t recall being given a prognosis but admitted, “I didn’t really want one.” Laura identifies what are often barriers to communication about prognosis. That is, both patients and doctors may avoid these uncomfortable conversations, leading to a “collusion of silence.”

 

In SpeakSooner: A Patient’s Guide to Difficult Conversations (Guide), which accompanies the video, I developed prompts to help patients formulate and communicate questions about the meaning of words like prognosis, treatable and curable.

 

Now, the topic of prognosis will be addressed at a SpeakSooner community education program titled “Comfort or Conflict in End-of-Life Care: A Discussion About What’s Missing with Advance Directives.” The May 24 program includes the documentary film PROGNOSIS- notes on living, which has been hailed as “clear-eyed and unsentimental, what results is an emotionally raw, funny and profoundly intimate present-tense diary of a life fiercely lived, and a love worth fighting for.” The film will be the springboard for the panel to offer multiple perspectives on this critical community conversation about what matters at the end of life. (registration link)

 

What can’t be overlooked is how avoidance of discussing prognosis during the course of illness can leave patients and loved ones surprised and unprepared to face end of life care decisions. During my tenure as a medical humanist at a cancer center in Vermont, I observed how denial of a life-threatening illness, unfamiliarity of medical terms and anxiety about the future led to barriers for patients inquiring about prognosis. On the other hand, I witnessed healthcare providers avoiding the topic of prognosis for fear of upsetting patients with “bad news” and being personally uncomfortable talking about futile treatment options or limited survival time. Sadly, the avoidance of these conversations occur all too frequently.

 

What I’ve learned over the years is that there needs to be ongoing honest conversations about health status, prognosis and goals of care, which is the aim of the Guide’s chapter on “Understanding Your Prognosis.” I believe that patients need to be prepared to open conversations about prognosis throughout the course of illness. So, when that time comes to make decisions about preferences for care at end of life, they would have already been actively involved in weighing treatment options and quality of life considerations. None of us like to think about dying but, then again, none of us or our loved ones want to experience unnecessary suffering and regrets.

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