Life really goes a full circle.
We are born as babies, then we grow up and walk. We walk through the entire
life and then we are babies again, just this time bigger and wrinkled.
This is a story of 2 dads who I
happened to take care at the same time. I will call them Mr Leon and Mr
Stevens. (I will use fake names and will alter the illnesses to protect their privacy)
Mr Leon is a dad of a 42 yrs old
daughter Myra who also has a 10 month old infant. He had an oropharyngeal
cancer and history of stroke that changed his life overnight. Stroke left half
of his body paralyzed. Moreover, he had a contagious infection that could be
very harmful for the people taking care of him. Despite this, the daughter took
care of him religiously. Having lived like this for a couple of years with
numerous hospital and Nursing Home stays, Mr Leon was at the end of his
patience and was desperate to reach to an end of his sufferings.
Mr Stevens is a dad of a 45 yrs
old daughter. He was up and about until 4 weeks back. He was afflicted with
Parkinson’s disease and Alzheimer’s disease which were progressing gradually
until 4 weeks back when his condition deteriorated markedly, to an extent that
he became bedbound. Mr Stevens is 4 weeks into this condition and is hopeful
that he might get better.
Both of them were awake, alert
and oriented but could not speak clearly. It was very hard to understand what
their meaningful mumbles meant. Both of them were unable to eat on their own,
Mr Leon being slightly worse than Mr Stevens. Both of them needed a nasogastric
tube for feeds. Mr Stevens willfully cooperated and got his NG tube and hence
his treatment. Mr Leon didn’t …
Seldom do we see a bed ridden
patient like Mr Leon with all organs functioning. Mr Leon’s heart, liver and kidneys
were all in good condition. But his hemiplegia and history of oropharyngeal
cancer left him debilitated with inability to eat, move or speak clearly. Over
a period of time, he became very frail and weak. He was depressed and tired of
his prolonged sufferings. He couldn’t get a PEG tube because of suspected
perforation and infection. He needed an NG tube at the minimum.
The daughter loved her dad. She
was all in tears. She had been taking care of her dad and her infant diligently
for many years and was finding it very hard to let go of her dad. She wanted to
keep him alive and comfortable. She respected her father’s wish and with a
heavy heart, agreed to DNR/DNI. But she still wanted to keep going with the
basic measures to keep him alive.
Mr Leon’s love for his daughter didn’t
let him say ‘no’ in her presence and would agree to all sorts of physical exam,
blood draws and medical treatments. One morning her daughter was able to talk
him into agreeing for NG tube as well.
I went to his room, smiled at him
and asked him ,’how are you Mr Leon? Now where is that beautiful smile. He
attempted to smile. After explaining him the procedure , I started preparing to
insert the tube. He looked reluctant. I asked him if it is okay for me to put
the tube. He said “No” in his frail mumbles. Then he said. I don’t want this. I
am a man of merit. I’d rather be dead than have another tube. I have had enough.
It was very hard to decipher his mumbles. But he used all his strength and made
gestures with his entire frail body to make me understand what he was saying.
It almost made me feel like a butcher with that NG tube in my hand. I kept it
on the side and patted his shoulder. I told him, “Mr Leon, I am with you. I
will not do anything to you that you would not like. I will talk to your
daughter.“
My other patient , Mr Stevens
willfully swallowed the tube but Mr Leon was uneasy even at the sight of it.
Both daughters wanted best for
their dads. Mr Stevens and his daughters goals were aligned. They had just been
4 weeks into this situation and were very hopeful to come out of it. It was
optimal to do every possible thing for them because the patient wanted it too.
He wanted to live and be able to return to his previous functional level!
On the other hand, Mr Leon was
tired of several years of suffering and didn’t want to lead a miserable life
any more. He had lost all hope and wanted to go. But his daughter could not let
him go. She was respecting some of his wishes but was trying to compel him to
agree to other measures to have a few more days with him. She did not realize
that she was just prolonging the suffering for her father. Convincing him for
more procedures were hurting his self esteem and causing him more physical
pain. His love for his daughter forced him to say yes but deep down he wanted
to be left alone.
It is very important for us to
remember that patient comes first. No matter how much we love someone, true
love is loving what our loved ones want, respecting their wishes and honoring
their decisions.
Everybody likes independence. No
body likes being compelled into doing something they don’t like. And that’s exactly
what the terminally ill patients want. The best thing we can do to them is
agree with them and tell them that we are with them in whatever decisions they
make. At the end of life, extra few days don’t matter. The quality of time
spent does. Spending some time with them, diverting their mind from illness,
cracking a joke when eyes are in tears, remembering good times together and
telling each other how much they love matters more. I remember when I told one
of my terminally ill patients that his daughter called in to say that she loves
him a lot and is on her way, brought a smile on his face despite his
excruciating pain.
Mr Stevens is still struggling to
get his life back while Mr Leon finally got hospice at home. It is still a happy ending because both of
them are getting what they want and not what they are forced into. May God
comfort both of them!
-Jaya Sonkar MD MPH
©All rights reserved. Jaya Sonkar 2016
