Chapter 6–A Case for Humanistic Medicine: When the Doctor Himself Falls Ill
“When the doctor himself is wounded, he knows what suffering is. There is no better
training than the experience of illness.” (Arthur Kleinman: The Illness Narratives)
I believe that one of the most difficult experiences for a doctor is to fall ill and
have to delegate their own care to a colleague. During my many years of clinical practice,
I have cared for several colleagues and have unfortunately also fallen ill and been
attended to by colleagues.
The relationship between colleagues can be very educational and rewarding, yet it
is also very delicate. When we fall ill, our reasoning regarding our own illness becomes
illogical. There are profound fears and concerns, both familial and professional,
that arise with the onset of a disease for a doctor. This emotionally charged context
certainly clouds the objectivity of the sick doctor's reasoning. Questions and attitudes
that would be entirely understandable from a layperson must also be accepted when
coming from a sick doctor. This doctor, like any patient, loses objectivity when it
comes to their own illness. We need to understand this if we want to take good care
of this colleague-patient. We should never assume that our colleague will know what
to do in a given situation. We need to explain everything to them as we would to a
layperson, perhaps using slightly more technical language out of respect for their
knowledge. On the other hand, due to our colleagues' past experience, there will be
preconceived notions that we rarely encounter with lay patients. The layperson's ignorance
is sometimes a true blessing, as the stages of the disease can unfold without premature
fears interfering or even leading to reckless despair. There have even been cases
in which colleagues inadvertently committed suicide upon learning of a diagnosis of
serious diseases such as cancer or AIDS, often because they were unaware of the available
treatment options due to relying on their outdated views of diseases from other specialties
than their own.
The best thing is to never fall ill. However, if this almost inevitable experience
in all our lives afflicts us at a stage at which we can still learn and transfer this
knowledge to our daily practice, the lemon can turn into lemonade. The learning from
illness for the doctor is very broad. It ranges from how the colleague's secretary
should receive us to how the colleague should examine us and explain what treatment
we should receive. We also learn how our colleague attends to us outside of usual
hours when we have doubts or complications. This is a great source of learning to
nurture our arsenal of knowledge on how we will, from our own illness, improve the
care of our own patients.
I think that for those who have never gone through this painful experience of being
ill or for those who have already gone through it, the real question would be: when
we fall ill, what kind of colleague would we like to take care of us? What attributes
should this colleague have?
I will share with you, dear reader, some of my experiences as a doctor who fell ill
and also cared for several other colleagues to try to answer these two questions and
extrapolate this knowledge to non-medical patients as well.
About five years ago, while writing a paper on the use of prostate-specific antigen
(PSA) and other prostate cancer markers, I received the result of my own PSA, which,
although low, had shown a slight increase compared to the previous one. I was immediately
concerned because, based on my own studies, this small change seemed significant to
me.
I sought out a colleague of mine who, besides being a urologist, was also a personal
friend. He quickly saw me and reassured me, explaining that this PSA level was very
low and that I probably did not have cancer. I waited a few weeks according to his
guidance and repeated the test. The PSA had increased slightly. My friend then ordered
a biopsy, which I promptly underwent.
I remember that when I was subjected to the biopsy, as soon as I was given the fragments
on a Friday morning, I took them to another friend of mine, a pathologist, who, seeing
my distress, volunteered to study the material that very day and call me with the
result. I went to a house we have near São Paulo while I waited for the dreaded call.
After a few hours, the phone rang, and I sensed in my friend's voice the sadness of
giving me an unwanted result. In his sadness, I immediately felt the empathy and compassion
for my suffering. I called my urologist colleague right away and gave him the result.
He did not believe it. First, because I think he did not actually believe I had cancer.
Second, he was surprised by the speed of the diagnosis. I scheduled my surgery over
the phone.
Thus began the most difficult task of informing my closest relatives, the suggestions
for second opinions, and all the advice that my patients surely also receive from
their friends and relatives when their diagnosis is revealed to them. I paid no attention
to any of this advice. It was clear. I had cancer and wanted to be cured. With still
young children and a very supportive wife in everything I had experienced up to that
point and also in this difficult stage, I plunged into despair for a few days. Would
I be cured? Would the tests I was going to undergo before the surgery reveal something
that would seal my fate? Would I be able to work? How would my life be with my wife?
Should I tell my patients? Would they continue to trust me as someone with cancer?
What would the next years be like? Could I make plans?
Thanks to my religious upbringing, I turned to the Psalms of David, specifically to
the one that says, “Even though I walk through the valley of the shadow of death,
I will fear no evil, for You are with me.” I repeated this phrase countless times,
which became a true mantra for me. I was not alone...
I returned to my urologist colleague with my wife, and he analyzed all my exams very
carefully and kindly answered all my questions, which were very few compared to my
wife's. A man so busy was giving me his precious time to ease my anguish and, at the
same time, calm my wife.
The day of the surgery arrived. I spent the previous weekend in the same house where
I received the diagnosis, saying goodbye, so to speak, for at least some time, to
the self I knew.
I remember returning from the operating room and the days of weakness and pain that
followed the surgery. My colleague would come to visit or at least call me daily.
I was a person, someone he liked; I was not just a removed prostate. We talked a lot,
sometimes for hours.
The years passed. At first, every time I had a PSA test, I would get anxious about
the result. Gradually, I got used to the possibility that perhaps, thanks to the Almighty,
I might be free from this problem.
I told several patients whenever asked; I never lied. I think that sharing my illness
with them, who suffer in front of me, brings us closer together in a shared hard experience,
which is the questioning of our innate sense of immortality.
Some years later, I was diagnosed with thyroid cancer. I was also operated on and
subsequently received radioactive iodine. I was less worried this time but a little
more sensitive. I felt that I had to change something. I had to find an antidote to
so many problems. I bought a piano and started playing classical piano again.
About a year after my thyroid surgery, I suddenly received a request from my urologist
colleague to evaluate him. I did not understand why, as I had already called him that
day to discuss a case we had in common, and he seemed fine on the phone. I asked him
again if it was an evaluation for him or if it was for another patient of his.
My dear colleague explained to me over the phone that he had had prostate cancer for
about seven years and had kept it completely secret until that day because his blood
tests were very altered, and now he needed my help. I was honored that he had chosen
me to be his doctor.
I admitted him immediately, and we began to take care of him intensively for several
months, during which I learned much more from him than I could have imagined. Our
friendship deepened, and his immense wisdom of life and medicine, which had already
become legendary among his peers, began to radiate from his hospital bed, where all
his friends made a point of visiting him to talk. I met several doctors who came from
far away to visit him, college colleagues, eminent urologists from various states
of Brazil and abroad, who came to discuss with him everything from associative decisions
to more complicated cases. His enormous willpower made him do hydrotherapy between
chemotherapy sessions to try to walk, even with help.
His body, weakened by the disease that had progressed so much in secret, did not shake
his vitality and sense of humor. There were many days of conversations, jokes, and
exchanges of views that, often, lasted hours.
After some time, I understood why he kept it a secret. He wanted to protect his family
by working compulsively for as many years as he could. It was a noble ideal. Medicine,
a jealous lover of all of us, came before his own life. Even though the peculiarities
of his case would probably have made no difference in his outcome, this was certainly
an unusual attitude. By understanding his life story, a new dimension of the suffering
being opened up to me, his capacity for altruism and selflessness. The being who falls
ill can still teach much to those who are open to learning from him. From his choices,
I learned to see the man behind the disease.
Returning to the question: who, then, is the doctor we want to take care of us if
we fall ill? We want a compassionate, humanistic doctor who, competent in the science
of medicine, treats and understands our needs and the implications that the disease
has generated in our lives; advises us and comforts us in the context of his relationship
with us, and, above all, enjoys taking care of us.
