The subdued fluorescent lights in the room fail to illuminate the personal shadow
that a 25-year-old man has created around him. The ubiquitous COVID era mask and gloves
further act to make him feel much farther than the five feet difference between the
physician and patient chairs. He furtively looks toward the door, wishing he were
out of there in the next few seconds, and you squirm in your seat, never having been
more uncomfortable.
This is a 25-year-old man with Stage III Hodgkin's lymphoma, having finished four
cycles of doxorubicin, bleomycin, vinblastine, dacarbazine protocol, with a positron
emission tomography (PET) scan after two cycles showing almost complete disease resolution.
This should be good news and a rare moment when patient and doctor both share the
same positive tidings. You can see the set of data in front of you, young patient,
advanced-stage disease, no specific high-risk features, and good response on PET2:
this should translate to a 70%–80% long-term survival. The patient, however, is bogged
down by information from the internet. The 20% risk of relapse looms large in his
field of thoughts, and the theoretical risk of secondary malignancies and pulmonary
toxicity rears its ugly head. He had plans for the next year, but now it all appears
to be going downhill, even as you, as his physician, are disconcerted by this reaction
to seemingly good news.
As the patient sheds a quiet tear, you realize how out of your depth this situation
is. This is one thing that they never taught you in residency and fellowship. Sure,
there was the obligatory session with guidance on how to break bad news and how to
empathize, but that was always the 1 hour you could spend not being stressed out about
“actual” medical information and patient care. You are unsure of what to do now: should
you comfort him? Re-emphasize the “good” news on the PET scan? Tell him that he is
lucky to be in the 70%–80% of patients who respond to treatment? Or quote the meme
about confusing “my 20 years of experience with 20 min of Google search?”
This is probably the biggest disconnect we see when we compare the slim-figured, golden-haired,
long-coated, model-esque oncologists on popular TV with real life. Apart from the
flawless golden hair, of course. Have you noted a full episode dedicated to the piano
player who might lose his fingers, lumberjack who might not get to use his arms, the
mathematician who loses dominant brain function, or a dancer who has a serious muscle
disease? This likely serves to emphasize the effect of disease on human beings, magnifying
it tenfold by directly affecting the passion/vocation of the protagonist in question.
You must have also noted the elderly lady with lymphoma, who spiritedly plans to go
to Egypt and the Andes to see ancient ruins and Himalayas to see the Everest. Notice
how the doctor spends half an hour each day discussing her plans, reassuring her,
and knowing about the names of her children and nephews. If you grew up expecting
the same in real life, boy, are you in for a shock! On the other hand, if you are
seeing that in real life, wow, tell me how and where.
This disconnect is likely a product of necessity, and it is impossible to have the
same depth of clinical responses and emotional stockpile at the same time. Pragmatically,
a person can either see 20 (or 50) patients in a time-bound clinic or spend time going
into depths of social history and details for two patients. There must be a way to
balance it. You hear of old physicians who used to scribble the name of the patient's
siblings and pets behind the patient “file,” which would be an easy reference during
the next visit. Maybe, something similar to that? It is theoretically easier to add
such “medically irrelevant” information to a small note in your electronic records
for sure. Does it have something to do with the exponential rise in information? A
physician now has to deal with history, examination, laboratory tests, radiology,
molecular tests, family screening, and … insurance paperwork. Often relentless, information
is fired from all directions, and in many unfortunate cases, on email, phones, and
WhatsApp.
We are (a vast majority of us) guilty of the same. And for sure, treating the primary
illness is definitely a priority. Scratching beneath the surface is likely to reveal
more information than our cognition can handle. Maybe, it is the fear of opening the
floodgates, the fear that we won't know when to graciously exit the conversation and
divert the attention to medical reports. Maybe, scratching below the surface does
have its merits, but we are probably afraid to cut our armor too deep.
Declaration of patient consent
The authors certify that they have obtained all appropriate patient consent forms.
In the form the patient(s) has/have given his/her/their consent for his/her/their
images and other clinical information to be reported in the journal. The patients
understand that their names and initials will not be published and due efforts will
be made to conceal their identity, but anonymity cannot be guaranteed.
