Learning, together, to talk about death
Ipulled up the CT scan. Bright-red blood had washed over the patient’s left frontal lobe like water colors running down a canvas. A man, the patient’s husband, blinked back the tears welling up the front of his eyes. I was too afraid to break his gaze.
He choked as he voiced the question. Though he was a grown man, he appeared to me small and sounded like a child.
“Will she recover?” he asked. “Just tell me. Can she live through this?”
I inhaled. A million words flooded into my mind; I had to choose carefully.
“Just say it. Tell me,” his desperate voice pleaded with me.
My feet were in quick sand. In the back of my mind I heard my attending physician’s voice, as he put it to me: “She has very little chance for meaningful recovery. We can offer them surgery, but tell them she will never be the same again.”
This was the right thing to say, I told myself. But I felt crushed by the responsibility of talking to this family. They were strangers to me, but I was thrust into a completely intimate and emotional moment with them.
What if I chose the wrong words? What if my facial expression was wrong? What if I seemed insensitive? They might remember this moment for the rest of their lives.
As it turns out, many doctors often feel a similar anxiety. In a national poll conducted earlier in 2016, nearly all physician participants agreed end-of-life health care discussions are significant, but almost half reported they feel unsure of what to say. In fact, less than one-third of the doctors reported having any formal training on these sensitive topics.
Even Medicare recognizes the importance of these discussions; at the start of this year, Medicare began covering advance care planning as a separate and billable service.
These policy changes were intended for outpatient office settings, but the substance of the conversation is no different for inpatient hospital-based clinicians, who often encounter unexpected tragedies, when emotions run high and often uncontrolled.
And while end-of-life care choices rely heavily not on doctors themselves but on the loved ones who make decisions in these circumstances, I am still haunted by the fact that the way I frame these discussions may change the outcome.
Researchers at the University of Pittsburgh explored this phenomenon in a randomized study in which community volunteers were presented hypothetical scenarios that involved making critical decisions for sick loved ones.
They found in some scenarios in which doctors that led the conversations engaged in specific framing strategies, participants were less likely to choose CPR for a sick patient. Framing strategies included how CPR was described and possible alternatives.
For example, using the phrase “allow for natural death” as opposed to using the phrase “Do not resuscitate” altered the way families and patients reacted to the question. Also, framing the social norm as not choosing CPR resulted in fewer surrogates choosing CPR.
Doctors are granted a unique privilege to care for patients in their last hours and to help guide families through very difficult decisions. However, this influence generates a grave responsibility, and we must carefully navigate the fine line between being realistic and being paternalistic.
Patients and doctors are tasked with two important undertakings. For patients, honestly discussing what we physicians call “code status” is critical so that surrogate decision-makers, often the family, may avoid having to make difficult and life-altering choices, allowing them to deliver a patient’s end-of-life wishes rather than inserting their own desires.
For doctors, preparation and practice, both formal and informal, should become the norm. Just like any skill acquired in medicine, end-of-life conversations must be learned through coordinated efforts. In situations where a simple discussion can mean the difference between prolonged stress and increased costs or even the end of a human life, sensitive word choice and contextual framing can make all the difference.
Corley is a neurological surgery resident at Duke University Medical Center and writer.