From the Doctor's Perspective
Lessons from a Patient
by Dr Aditi Chaturvedi
Ahuja: A changing force in my life who will always remain in me. Thank
you Palliative Care, for the lessons of life that you have re-enforced.
She smiled softly and asked, “How are you Madam?” It was not any casual
remark and she also did not expect any casual reply. She was truly
concerned about how I was doing, as the last visit I had made to her
house had brought tears to my eyes when she played the guitar and sang
the song—“Hai Tuti Sari Ki Sari Mein” (I am completely broken). Amazed
at the concern a patient could have in a situation when she herself is
suffering all the trauma of disease and treatment and not knowing what
to say, as I had prepared myself to ask this question to her, I replied
“I am doing fine, dear, and I want to assure you that please don’t
hesitate to share your problems with me because you saw tears in my
eyes last week and never think that I am weak from inside, the tears
come for that moment and later as I leave to see another patient I am
I was trying my best to dodge this
beautiful angel of 25 years of age who was leaving her mark on me. She
was diagnosed in 2011 with Left Leg Sarcoma and had it operated, she
had received 25 cycles of radiotherapy locally in the affected region.
She was advised to take pazopanib for few months. She developed lung
metastasis. Repeated PET scan revealed hypermetabolic lung nodules
which were not responding to pazopanib. She was operated on again,
Bilateral Metastectomy in the lungs in August 2015. She received 6
cycles of chemotherapy, gemcitabine and neurokine from May
In the last one and a half years of my experience in palliative care I
had learnt to deal with both the emotions of the patients and with my
own emotions but she seemed a challenge. She would often pose questions
such as, “Why are we born? Why do we have to suffer?” Having no
specific answers to these spiritual questions, I tried to bring some
spiritual books to her till I realized that it was not working for her
and something else needed to be tried. We both decided that as she
loved to play the guitar, she should pursue this passion on days when
the effect of pazopanib waned and she felt better. I had started
feeling stronger as she picked up guitar skills and would often play
for me and our palliative care nurse when we would visit her every
This went on but I started to feel weak again inside, weak with
amazement when Monika started to physically deteriorate in front of me
but her singing and guitar playing kept on improving conveying through
whatever she sang that how broken she is from inside and how deeply she
wishes that this suffering should come to an end. She would sing songs
preparing all of us for how to live and move on in life without her.
She would sing songs of what we should do when we remember her after
she has left us (“Mein Rahoon ya Na Rahoon Tu mujhme kahi Baki Rehna.
Mujhe neend aye akhari tum khwabon mein aate rehna. Kisi Roz Barish joh
aye samajh lena boondo mein mein hu. Subah Dhoop tumko sataye Samajh
lena kirno mein mein Hun”—Whether I remain or not, you remain in me.
When it’s my last sleep please come in my dreams. Any day if it rains
imagine that I am in the drops and when the sunshine disturbs you in
the morning imagine I am in the rays.). Such preparedness for death is
astonishing to all of us at the Hospice and we all wonder if we will be
able to prepare ourselves for our own end of life in the way Monika is
She has gradually become my inspiration and I often wait to learn more
from what she says and feels. She is different from the rest of
patients, concerned for everyone around, father, sister, brother,
friend, doctor, nurse, other patients. She is prepared for her end of
life and is preparing others for the same, as everyone around seem weak
in front of her ever increasing energy. She conveys intermittently-
“All this money and materialism is going to be left here, what remains
for ever is the love and concern that we have for each other. No one
can take money along up there but we can take along and leave behind
memories of love and fondness.” Recollecting these words again and
again, I realized that my personal life is turning too and I make
decisions which are more for the concern of my family and friends and
less for my personal interests.
singing keeps on improving and now her friend accompanies her in her
singing. They both started to perform in small concerts and people
would appreciate her and she started to feel like a little star. She
would share that as time is approaching for her end most of her wishes
seem to get fulfilled. She shared that she wanted to be known and
remembered –and that had started to happen.
How deeply this conveys human instinct to be loved, known and
remembered by all and how important it is in palliative care to convey
that I will remember you always.
She now wished that her parents should
drop their egos at least for her and would stop fighting over small
things conveying very strongly again to me that how important it is to
drop our egos for love. She requested the palliative care team to help
her share this with her parents and she took our help to convey to her
family her current disease status and that she has little time left.
She does not want to waste time in false assurances from father and
sister that everything will be fine.
Just as the palliative care team had started to feel incomplete to
handle emotions for Monika and her family, a palliative care
psychiatrist helped us to unfold the truth for the family, re-enforcing
the fact that help will always arise in need. I am so grateful to two
wonderful doctors who are supporting our team, who stand by with us
when Monika has now developed brain metastasis and oncologists share
that she has only a few months left. Monika is presently receiving
radiotherapy in the regional cancer centre and sets another example for
the palliative care team as she sings for the cancer patients while
waiting for her turn for radiotherapy. The Cancer Hospital doctors and
nurses are surprised to see her perform and congratulated our heroine.
We are now working with the fears which trouble Monika intermittently
about the future, of getting more pain near the end of life and about
getting paralyzed. Amidst her fears and concerns of death and dying she
stands alone inspiring people around her not to give up living till the
Monika has very strongly re-enforced the lessons of life to me which I
felt must tell to our friends, as we often forget in the race of life
of always wanting and achieving to sit back and think about concern and
care for our loved ones, about our over-concerns for wealth (how much
do we actually want), about dissolving egos, about thinking about why
suffering happens, about living life till the last and the desire to be
always loved and remembered.
Thank you Monika, for being an inspiration to me. I will always remember you.
of My Experiences at Ganga Prem Hospice
by Dr Madeleine Urstein
A beautiful moment, a beautiful
experience, and a different way for me to contemplate
as go back to my western land.
Mataji welcomes us: the house is simple and fresh.
Passing by a cracked door we see a man lying down,
paralyzed: her husband.
We sit down in the living room, "we",
the Ganga Prem Hospice Team, a masseuse, a social
worker, a nurse, myself and my daughter, both
(Right) with her daughter Dr. Dominique
speaks of her many surgeries, for the 3 different
types of cancer her body is suffering from.
She shows us her many scars, especially the
one in the leg that recently became painful
again. She has medication for the pain, but
doesn't dare take it. In the physical examination,
the leg shows inflammation, possibly from
a recurrence? It takes a lot to convince her
to have it checked by an oncologist at the
clinic: she is tired of being sick.
Around that topic her words become faster and
she starts sharing the many challenges of her
difficult life: her husband bedridden and needing
so much help, the sickness of her son, also fighting
with cancer, and the death of one of her grand
children, also from this terrible disease that
seem to spread in the family.
The whole story hurts, she is all pain.
During this time, the masseuse rubs her back,
the nurse checks her sugar level, we give medical
advice; but most of all, we are all around her,
allowing her to express herself, simply caring
for her and pointing to the courage needed to
endure so much.
Progressively, the atmosphere becomes relaxed,
a gentle smile shines again on her face. Mataji
sits back up, orders her granddaughter to bring
us chai and cookies, even though we tell her not
The consultation is transformed in a warm 5 o'clock
tea time. We chat and Mataji finally brings out
the bag of medicines we had wanted to check since
the beginning of our meeting. She shows us them
one by one, the one she might take, and the ones
she will not take. After some clarifications,
we get up to leave. To my great surprise, she
then took me and held me in her arms, warmly,
as if I were a daughter, in a bath of affection.
As during so many other moments during this time
in India, the gratitude expressed goes beyond
what had been given.
A beautiful moment, a beautiful experience, and
a different way for me to think about as go back
to my western land.
Experience at Ganga Prem Hospice
(by Dr Rajiv Kumar Saxena)
I am a novice to the field of
palliative care. My firsthand experience after
four days of home care visits has been very touching
was overwhelmed by the love and affection
received from the patients and their relatives.
In the era of ever growing queues at hospitals
and long waiting periods at consultants' chambers,
our home care visits were seen as a God sent
gift. Except for a few, most of the patients
were in great agony. Physical ailments (mainly
pain) have taken a toll on their confidence
|Dr Saxena examining
a patient in her home
We were seen as someone with the Midas touch
who could offer some miraculous cure. Primarily
I tried to boost their morale and dispense medicines
according to their complaints, but their needs
go beyond alleviation of symptoms and reassurance.
Some were unable to carry out further treatment
because of financial constraints and the high
cost of treatment involved. Even a minuscule percentage
of financial aid can make a drastic improvement
in the cancer patient's treatment by not just
improving quality of life but by prolonging it
Patience is a primary trait which we have to
develop. Listening, responding to concerns and
providing relief from physical ailments, as well
as dealing with social, psychological, cultural
and spiritual needs of patients and their family
members should be our primary objective. We can
not change their destiny but our efforts can make
an appreciable difference. Caring is as paramount
as curing. Our patients need and deserve our empathy.
Ours is a small but significant step in cancer
care. I hope that in time it will come to grow
to much bigger heights. It will help us to achieve
our goal of improving the quality of life of patients
and their families.
Do We Have Control Over
(by Dr AK Dewan)
I have witnessed the death
of people who have learnt to love fully. Such
deaths are peaceful, pain free, a letting go;
deaths in which no time is spent dying.
Many times, you might have observed elderly people
having a premonition about their dying. They are
at peace. They might announce their end a few
hours before their actual demise. I vividly remember
my grand father saying, Call my daughter in law
and my grand children. I may not see the sunset.