When Breath Becomes Air

In January of 2014, The New York Times published an essay, “How long I got left”
written by Dr. Paul Kalanithi, a 36 year resident in neurosurgery at Stanford University,
who had been diagnosed with metastatic lung cancer. He passed away, on March 9th
2015. He graduated from Stanford, with a BA in English literature, MPhil in history and
philosophy from University of Cambridge, an MD degree from Yale School of Medicine.
Abraham Verghese, a clinician and a literary genius, in the Preface to this book writes, “I
felt inadequate, there was an honesty, a truth in the writing that took my breath away”.
Those interested in knowing about the fear, frustrations, courage and great will do live
and achieve something must read this book.

This blog is not about his book or about the dying, but about what goes on in the minds of
people who are critically ill or terminal and how family copes up with the situation. In an
earlier blog on Mind and Body, I had written that no tow individuals have the same
thought process. We all have evolved differently, hence the reactions also differs
according to the status of our mind and its capacity. When one reaches ripe old age,
people think of this process and express their feelings differently. One senior individual
when asked how she was doing told me, that she was “just waiting” for it to happen. I
have seen others cry, get irritated or going into frustration. However, knowing that end is
coming and getting prepared for that day is totally different experience.

My memory goes back to 1964, when my father was diagnosed with esophageal cancer.
During those days they considered him to old for any surgery. He was just 64 years old.
My mentor who had a similar diagnosis underwent surgery at VA Hospital, Minneapolis
and is still alive after three decades. Anyway, my father knew his time was up and he also
got the information about the time and date of his death, through a known predictor of
future events. Once he came to know that he had only two weeks to live, he asked me to
come home and stay with him. He made all the needed preparations for the fatal day. The
specific event I want to narrate is about the impact of our culture on such events and how
we face such events. According to some astrological predictions, we were not to allow his
death to occur inside the house. In view of this belief, we had to take him to an outer
office and make him spend his last few hours outside the house, in which he lived for half
century. To this day, I cannot justify this act in my own mind. Whether I liked it or not
we had to do it, he was generous and accepted this decision, as he did not want to cause
any inconvenience to the family, because of this cultural hang-up.

The next event was my own experience in late 90s. I developed a low-grade fever of
unknown origin. I underwent all diagnostic tests available and we could not figure out the
cause for this illness. I had elevated inflammatory markers, elevated white cell counts and
enlarged mesenteric lymph nodes. Since it lasted for several months, I developed
depression, last considerable weight. I decided to take some time off and go to India, for
a change of scenery. More than anything, I was tired of diagnostic tests, which were not
giving us any clue of what was happening. My family physician did not want me to go to
India under such condition. I had made up my mind to go anyway. He gave me complete
folder with copies of all the diagnostic tests done in USA, in case some acute event
develops. At that time similar thoughts came to my mind also, how long I got left? Not
knowing what is in store for you is quite disturbing. It is OK when you are healthy. But
when you cannot diagnose what is happening with all the modern technology at your
disposal, it is frightening. I was working on my first book on the subject of Coronary
Artery Disease. I was not sure whether or not I would complete that task. I requested my
close friend Dr. Chandra Viswanathan, to make sure, that the book is completed. One
other friend that I met by chance in Bangalore also helped me with the book project.
Since that time, I am keeping an eye on the clock that is ticking away. I am in a mad rush
to do as many things as possible. Does it really matter? In a way it does. It gives some
motivation to do things and takes away the dark thoughts of an unknown future. It has
been close to sixteen years now. I have edited over 8 books under the aegis of SASAT
and still counting the time.

Just about four years ago, I had to face another situation, where it was hard to make the
best choice for the terminally ill individual and the family. My father-in-law was
admitted to the hospital and he had written in his will that no unwanted efforts should be
made to keep him alive, in case of a terminal condition. His kidney was failing and was
progressing towards a heart failure. Since none of us were doctors, we were unable to
make the correct decisions as to how he should be cared. In India, we still do not have
any idea of what comfort care is for the terminally ill. In the case of Paul Kalanithi, he
was surrounded by clinicians and in spite of his desire to go home, he opted for comfort
care at the end. My father-in-law also wanted to go home. However, as he required
critical care there was no way we could have taken him home. Those last few hours of
life posed very serious questions in my mind as it did fifty years ago when my father was
terminally ill. In spite of my repeated requests, the attending physicians refused to give
him comfort care. I can never forgive myself, once again, as I was not able to provide
him the needed comfort at his last moments of life.

The day my son got married in Manchester (Dec 28th, 2014), we got the news from India,
that his grand mother (my mother-in-law) was admitted to a hospital in Bangalore. We
rushed back to India, to see her and within few hours, found out that she had developed
leukemia. My wife being a radiation oncologist knew very well that at her age (85), it
was just a terminal condition and no treatment could save her. We as a family decided to
give her the best of the care and discussed the situation with my mother-in-law. She just
accepted the facts and requested that she should get comfort care. She did not want any
terminal life support. Looks like finally after fifty years, we had learnt to accept the facts
of life and how to cope up with the inevitable fatality. In other words, how to celebrate
the life than to make extraordinary efforts to hang on to it, for a few more hours or days
knowing that it will not help nay one. It requires courage, generosity of hearts.

What do we understand from these paragraphs about the care of terminally ill? For
instance, Abraham Verghese who met Paul just few months before his death did not go
often to see him and discuss his progress with writing or health, as he respected the
privacy of the individual at such a moment. Paul, knowing that he had such a short time
to left to live (He asks in his essay how much time is left, one day, one month or an
Year), decided to do his best and complete his book project. On the other day (last
Sunday), I was watching Fareed Zakaria on CNN (GPS). He had a guest by name Piers
Sellers an astronaut from NASA (Head of Earth Sciences). He was diagnosed with cancer
of the Pancreas. He was told that he has less than 500 days to live. Mr. Sellers told
Zakaria that he would spend rest of his life (500 days) in efforts to save the world from
hazards of climate change. Finally in the latest issue of the ASH Clinical News (March
2016), there is an article about how being diagnosed with blood disorders changed the
lives of hematologists. Dr. Lukas Wartman (Dept. of Med. Washington University) who
was diagnosed with Acute Lymphocytic Leukemia (ALL) has joined a research team
working on the genomics of cancer. He writes. “My goal isn’t to cure my own disease,
but instead, to find a niche within the research world, where I can make a significant
contribution”. In the same issue, there is a write up on David Fajgenbaum (U. Penn), who
went to U. Penn as a resident and was diagnosed with Castelman disease. He realized that
no one had answers about how to treat this disease. He has dedicated his efforts to
elucidate the etiology of this disease. He writes, “I work with a sense of urgency that any
moment wasted is a moment that could have saved someone’s life. When I’m looking at
research, I am focused purely on its impact”.

I started this blog with the article that was published in New York Times on January 24,
2014 by Paul, soon after he was diagnosed with cancer. Now he had to suddenly face this
terminal illness as a patient and not as a clinician. In his essay, he ponders about the path
forward after the diagnosis. He asks questions and tries to find answers, “Tell me three
months, I’d jus spend time with the family. Tell me one year, I’d have a plan (write that
book) Give me 10 years; I’d get back to treating disease. He says that, ”My Oncologist
would say only: ”I can’t tell you a time. You’ve got to find what matters most to you”. It
is left to each one of us, to find out what matters most to us. Let us find out how such a
news affected the life of one of the most successful entrepreneur the world has ever seen,
Mr. Steve Jobs, founder CEO of APPLE. Let us read, what he says (Stanford Report June
14, 2005), “If you live each day as if it was your last, someday you'll most certainly be
right." It made an impression on me, and since then, for the past 33 years, I have looked
in the mirror every morning and asked myself: "If today were the last day of my life,
would I want to do what I am about to do today?" And whenever the answer has been
"No" for too many days in a row, I know I need to change something.

In the last few paragraphs we have reviewed the life, moods, attitudes of terminally ill
people and their families. Paul Kalnithi, Piers Sellers, Lukas Wartman and David
Fajgenbaum. All of them felt the need to do something to contribute to the world. They
felt the need to do as much as possible in the time that is left, knowing that the time is
short and uncertain. All living things die one day or the other. We live for years without
even thinking about that final day. This is a subject that most of us want to avoid thinking
or discussing. Yet the fact remains, that we all have to face it one day or the other. The
question that I want to pose before, I conclude this blog is this; when we are about to
draw the final curtain of our lives, can we draw it with grace, satisfaction and a sense of
appreciation?

Gundu H.R. Rao, Potomac, Maryland, USA