In a crowded restaurant, I'm unintentionally eavesdropping as a woman describes in glowing superlatives her mother's physicians. Then she sighs, “I only wish that when my mother's oncologist stopped the chemo, he'd told my mother, ‘It's okay.’”
The provocative phrase—It's okay—catches my ear one too many times. I wonder what “it” is and what she means by “okay.” Thinking back to conversations with others who voiced the same regret after the death of a loved one, I can't help but wonder what people want from oncologists who are transitioning patients to end-of-life care.
Obviously, as oncologists you can't just say “It's okay” and leave it at that. Doing so would infuriate some patients who'd respond (silently or aloud): “No! It is not okay that you have nothing more to treat my cancer. It is not okay for me to die.”
With no more treatments or scans scheduled, patients who are told “It's okay” may feel abandoned. They may fear you are not trying hard enough and are giving up too soon, especially if other physicians are offering additional therapies.
Other patients may conclude you never really cared about them, assuming your “okay” means you consider a failure to cure acceptable or satisfactory.
While mulling over possible meanings, I hear of a patient for whom treatment became futile. Before leaving what she knew would be her final visit, the patient asked her nurse to relay a message to her longtime oncologist: “Please tell him it's okay.”
As told to me, the patient sensed her oncologist's distress about the limits of what he could do. In a poignant reversal of roles, the patient wanted to reassure her physician that she didn't blame him, and she didn't want him blaming himself.
Maybe in the setting of stopping cancer treatment, “It's okay” from the oncologist would similarly reassure the patient that the outcome is not the patient's fault. It's not because the patient didn't do enough or hope enough.
When it's time to stop cancer treatments, patients' confidence that they've done their best brings a measure of comfort. So, too, does patients' knowledge that both quality of life and length of survival may be improved when off all cancer therapies.
While oncologists make the judgment calls and write the orders to discontinue cancer therapies, it's usually the nurses, chaplains, and social workers who lean in close to these patients to gently give permission. “It's okay. You can let go now.” Could it be that the woman in the restaurant felt her mother needed permission from the chief himself to stop fighting?
There's another, more primal function of this two-word phrase to consider: To calm down someone who feels vulnerable and threatened. Whether it's a mother calmly cradling her child on the Titanic as frigid waters encroach or it's a mother calmly cradling her child as a nurse administers a routine vaccine, the mantra whispered over and over is the same: “It's okay.”
As if to prove the point that people use this phrase instinctively to calm loved ones in distress, I awoke at 2 am this morning, acutely ill. My husband (who knew nothing about this almost completed column) put his hand on my shoulder as I vomited, saying softly, “It's okay. It's okay.”
Smiling at the irony, I noted what I was feeling: “He's right here. He's not leaving me to do this alone.”
When patients fear “doing this alone”—whether “this” is chemo, surgery, radiation, watchful waiting or any other challenge—they look to their physicians for clues about what to think and feel, as well as what to do. Your calm demeanor communicates to patients: “It's okay. This is familiar territory for me, and I know you can do what needs to be done.”
In oncology one of the toughest tasks is helping patients accept that the time has come to stop cancer treatments in order to maximize the quality of their remaining time. The key lies in educating patients to shift their focus from the narrow perspective of what's happening with their cancer to the broader medical and philosophical views of what is possible once chemo and radiation therapy are no longer beneficial. If you say “It's okay” without explaining what “it” is and what “okay” means, the risks of misunderstandings and hurt feelings are great.
One approach to helping patients face the inevitable involves taking a moment to acknowledge that you wish things were different and then spelling out the applicable meanings behind the shorthand of “It's okay.”
“This is nobody's fault. You and I did everything we could.”
“You can stop fighting. It's time to let go, so you can embrace what time you have.”
“You are making a wise decision by stopping cancer treatment now. There is still much we can do to make sure the days ahead are as good and as many as possible.”
“I know you can do this, just as you've done everything that led us to this point.”
“I'll be here with you, whatever happens.”
At the limits of science to contain cancer, patients look to you for guidance and encouragement. Your calming words of compassion—and, maybe, a hand squeeze or hug—help patients begin the final stage of their survivorship journey. And while saying good-bye, you may help yourself, too, by reminding yourself that “It's okay.”