We talked for hours in that little windowless room adjacent to the intensive care unit (ICU) during his final week.
A patient dying of a toxicity that should have been treatable, but is not.
The oncologist's tasks:
to care for the man in the ICU bed by caring for his family;
to knit up the raveled opinions of the many consultants;
to forge from these strands a family's understanding of status and prognosis;
to be a family's ambassador in the ICU, while others toil to adjust the machines and monitor the urine flow;
to make a plan that relieves suffering and preserves dignity; and
to do all this not with brute-force honesty but with patience, gentleness, and humility.
The reckoning process begins for a wife, three adult children, and a daughter-in-law. The youngest begins the questioning.
“So, if our prayers were answered and the lung cancer is shrinking, why are we here?”
“It happens this way sometimes,” I hear myself saying, instantly dismayed by my own banality.
This is not a physiologic or theologic explanation. Its only virtue is that it is factual. It does happen this way sometimes, no matter how fervent or broadly based the prayers. I have wondered why it is so for more than 35 years as a student of oncology. But the quest to understand is far older than my own period of seeking. Virgil's1
Aeneas in the underworld observes: The world is a world of tears and the burdens of mortality touch the heart
In the little windowless room my words, phrases, and metaphors, delivered solemnly, are studied as if they were physical objects one could rub with the fingers or hold up to the light like Mesopotamian pottery shards with strange carved words. My word choices are turned inside out, and compared with yesterdays', I can see the family struggling to understand; they are strangers in a strange land. How lost they must feel, barraged by a slew of new terms, acronyms, and dangerous conditions. The questioning resumes.
explain ‘stable failure,’
My first tries were themselves insufficient.
I try again; choosing carefully, using different metaphors:
-the heart as pump,
-the bone marrow as factory,
-the kidneys as filter,
-the immune system as … a loose cannon.
-the lungs as collateral damage
The soon-to-be widow restates my phrases to see if she has it right. Worn down by the exercise, I nod. Close enough.
Daughter-in-law, following carefully, is quick to interject,
“But yesterday you said the X-ray is ‘unchanged,’ so why does he need more oxygen?”
Did I say that? Yes, the notebook in her lap remembers all.
“You say now ‘rest the lungs’ on the ventilator, but last week, still on the oncology floor, you said get out of bed and work the lung as if they were a muscle.”
Carefully, I unwrap more of our secret lexicon:
“Proven infection” versus “infection”
“Less inflamed” is still dangerously inflamed.
Five sets of eyes, five sets of ears, five sets of questions. And the notebook.
I begin again, choosing carefully. The learning is a process and occurs incrementally.
I tiptoe around acronyms and jargon. I assemble the words and metaphors to build understanding. This is part of the oncologist's job; at times, the most important part.
But words are not all the tools we possess. There is also the language of the body.
The grave subdued manner, the moist eyes, and the trembling voice, none of it pretend. The widow-to-be slowly absorbs these messages in a way that she cannot grasp the strange wordscape of the ICU.
With time, understanding drips in, and the wife makes the difficult decision that all families dread, but some must make despite the fear.
And tears come to this anguished but gracious family who manage, amid their own heartache, to recognize the dismay and bewilderment of the oncologist who used the right treatment at the right time but still lost a patient. The family sensing this offers to the doctor powerful hugs and the clasping of hands that opens their own circle of pain to include one more in search of why.
To Jodi Maxwell for her gentle but skilled use of the red pen.