Pearl 3: How Can I Discuss Prognosis with My Patient?

“I’ll keep going until the patient tells me they want to stop,” the medical specialist tells me.

“I’ll keep going until the doctor tells me they think we should stop,” the patient tells me.

As a palliative care physician, I often act as a “communication facilitator” between healthcare providers or specialists and patients and family members, especially when it comes to discussing difficult topics. 

One of the most difficult topics is relaying prognosis.  Clinicians rarely receive education or training on discussing shortened prognosis with patients and family members.  And due to lack of mentorship, feedback, support, scheduled time, and reimbursement, there is at best apathy and at worst discouragement from the current healthcare system for clinicians to discuss prognosis with patients and family members (even when patients ask for this information!).

“I asked my oncologist how long I had,” the elderly lady with stage 4 breast cancer commented with frustration, “and he gave me a response I didn’t know what to do with.  He said, ‘Maybe you can surprise us and live another three years!’”

Below are three communication tips to assist you in delivering prognostic information (and for patients to receive prognosis) in the least emotionally distressing manner possible:

1.       Lead up to the prognosis with data supporting the prognostic estimate.

For example, “For people with severe stage dementia who were walking several months ago and are now bedbound, who are no longer eating like your mom who is taking in only two spoonfuls of applesauce and a sip of Ensure each day, who used to interact with family before but is now spending most of their time sleeping in bed…”

or

“For people with congestive heart failure that is worsening to late stage or end stage, where they are having difficulty getting out of the chair due to severe shortness of breath, losing appetite and losing weight like the 15 pounds you have lost in the past month, and now needing to go to the hospital every month and a half to get fluid off the body because pill diuretics are no longer effective…”

2.       Refer to the third person as if the prognosis information is for that third party (this also helps normalize the patient's worsening health condition, acknowledging that there are others who are going through the same).

For example, “their prognosis…”

3.       Provide prognosis in terms of time range without actual numbers nor absolutes.

For example, “…is limited weeks.  And if someone were to stop eating and drinking altogether, then even shorter to days.”

or

“…is transitioning from years on average to months on average.  An individual may live much shorter or longer than the average, but the average is months.”

Being present as a fellow human being becomes tearful or shuts down in disbelief is uncomfortable, especially when we are used to being able to provide answers and solutions as clinicians.  Part of relaying prognosis is preparing ourselves ahead of time that we may feel some amount of discomfort, helplessness, vulnerability, and/or mild distress ourselves; this is important so that we do not backtrack on the prognostic information we relay in an attempt to relay our patient’s or family member’s emotional suffering.  “But who knows?  Maybe your mom will start eating and live another six months!” or  “But you never know!  I took care of someone who lived five more years!  That could be you!”

Arguably just as important as relaying prognostic information in a gentle, straightforward way is allowing a bit of time for our fellow human being to process this information.  This often requires a willingness to pause and sit in the uncomfortable silence. It will often involve exploring and acknowledging their emotions. “Can I ask what’s running through your mind right now?” or “Can I ask if this is coming as a surprise?”       

I have discussed prognosis with thousands of patients and family members as a palliative care physician, specifically with those who wanted to discuss prognosis (many of whom had not known how to articulate this question), and almost all have expressed gratitude for answers to questions lingering in the back of their minds but never spoken out loud.

I hope the above communication tips give you the confidence to attempt to communicate prognosis, and to keep attempting despite the awkwardness and discomfort, to better serve our patients and family members during some of the most difficult times of their health journeys.