Palliative Care Reflection

1
Weaving the Narrative into an Undergraduate
Palliative Care Curriculum Alan Taniguchi, MD,
CCFP, ABHPM, Palliative Care Physician Janet
Noble, MSW, Director, Hamilton Hospice Palliative
Care Network Amanda Jerome, MD Student, Class of
2006 Division of Palliative Care, Department of
Family Medicine, McMaster University
Division of Palliative Care Department of
Family Medicine Faculty of Health Sciences ?
McMaster University
Sample Narratives

• Palliative Care Reflection
• This man looked well. I never would have guessed
  that he was dying. Dying is a term I would use
  to describe frail ladies in their late 80s who
  have really bad COPD and CHF. This 49-year-old
  man lay in bed looking as though he could clock
  your average guy with one punch. And he was my
  first official palliative patient.
• Bone metastases. Im not even sure they knew
  where the cancer came from. But Joe had such
  bad pain in his back and neck that he had been
  operated on at least twice, the second time being
  called a failure. He was now paralyzed from
  the waist down. As far as his docs and nurses
  could tell, his future was bleak. But Joe always
  seemed happy with the treatment he was getting,
  optimistic that hed be getting better and going
  home to take care of his wife with an anxiety
  disorder and his 11-year son. Some nurses seemed
  irritated that he wasnt facing up to reality.
  Dr. M, however, said she was sure he knows whats
  really going on. Hes making plans, organizing
  supports for his family, as he always has.
• When we go into his room, we put on gowns and
  gloves because hes VRE positive. Yet another
  barrier between him and the outside world. The
  room is small and stark, painted a turquoise
  green colour. There is a flood of white light
  from the window, the morning after a snowstorm.
  For a time, the bright light drowns out the
  rooms silence. Only after we find seats around
  the bed do we notice there is no white noise in
  the room. There arent even sounds of breathing.
  Outside the room you can hear sounds of people
  and machines and phones they are part of
  another world.
• Joe is unshaven. He is a little chubby. Hes
  lying in his bed with the head tilted up like a
  Lazy Boy. No tubes, no lines, no monitors. Just
  the TV. He looks pleased that we are there. Dr.
  M asks Joe how hes doing. Shes gotten to know
  him, and I can see there is trust between them.
  He trusts that she is there to lessen his pain
  and treat him with dignity. She trusts that he
  will allow her the chance to help.
• I am a fly on the wall. I dont belong here.
  Im a student watching a relationship progress.
  I likely wont be seeing him again. I say
  nothing.
• The bedside TV is on but there is no sound. He
  is not paying attention anymore, but he was
  watching Fashion Television. As Dr. M and Joe
  discuss the option of starting a morphine pump,
  the TV plays scenes of thin, young, rebelliously
  bored-looking models strutting down a catwalk.
  Images of beautiful, immortal people flit by. I
  wonder if that makes him sad or resentful or
  indifferent. Or was he meditating on fashion as
  modern art? Or just thinking certain girls were
  hot and others not. Maybe Im imagining hes
  thinking dramatic things because Im more shocked
  than he is that he will not live long.
• I hear something about booking an MRI, and
  something about a pain pump. All I can remember
  is that somehow, without use of any words like
  death, the end, prepare, inevitable or
  sorry, Dr. M has nudged Joe to start thinking
  about how he will prepare his family for the
  future. It is so subtle on another occasion I
  might have completely missed it. As it is, I
  cant quite remember how she artfully guided us
  all there.
• Soon afterwards, I know it is almost the end of
  our visit. A pleasant silence fills the room.
• Would you like some music? I can bring in some
  live music! What? How unexpected. Dr. M is
  offering the services of a live music group to
  erase the silence for a time. Joe smiles. Just
  a radio would be nice.

What I saw I saw people in the process of dying,
some more prepared than others. I saw tears of
sadness and frustration and expression of grief
on the faces of patients and their families. I
saw smiles and laughter on the face of a patient
who, although in the stages of dying, is still
very much alive, hopeful and at peace with what
is to come. I saw compassion on the faces of
caregivers and looks of appreciation on the faces
of both patients and their families. What I
heard I heard the sobbing of a dying wife and
mother worried about who would take care of her
daughter when she is gone I heard the laughter
of the same dying wife and mother (still very
much full of life) as she joked about how she
molded her husband to her liking early in their
marriage. I heard the sobbing of her husband as
she mentioned, for the first time, that someone
should contact the parish priest, for it would
soon be time to administer the last rights. I
heard the sadness and frustration in the voices
of the grown son and daughter of a dying mother
as they struggle with the cold practicalities of
homecare and funeral arrangements, and who to
call for pronouncement of death. I heard a dying
man speak Italian. None of us understood
Italian, but the sadness and frustration in his
voice needed no translation. I heard compassion
in the words and voices of caregivers, and
appreciation in the words and voices of patients
and their families. What I felt I felt intensely
sad at times with one dying patient, especially
when listening to her express her feelings of
love for her husband and children, and her
feelings of sadness for having to leave them. I
felt sorry for her husband and her children who
would be losing their family pillar. I felt
frustrated that I couldnt communicate with the
Italian gentleman. What I thought I thought
about how difficult it is to deal with the death
of a loved-one. I thought about how useful and
often helpful it is to talk in a frank manner
about death. I thought about how we can affect
people in significant ways not only with
medications and elaborate, advanced, expensive
therapies, but with compassion in our words, our
acts and our touch. Michael Hickey, MD Class of
2006
Feeling tears fogging my eyes and threatening to
fall down my cheeks, I desperately started
looking at the floor. I am not going to cry.
Now is not the time to cry! I managed to
recompose myself by focusing back on the patient
and her family, and it was then that I first
realized that there was peace there, and that
they found their tranquility and acceptance, and
that the one who was tormented was actually me.
It made me realize that while there is a
tremendous sense of loss and sadness in death,
there can also be peace and blessing, and that it
actually is up to each of us to find and help
find that contentment and serenity. Diana Blank,
MD Class of 2006
I saw a sick woman crying alone in bed with a
barely audible voice, wishing just one of her
children would come see her. She is lonely and
afraid. I heard patients speaking intimate,
personal words of truth, honesty, and deep
feelings. I thought of how strong the families
of these patients must be trying to be how the
little things in each patients day impact body,
mind, and spirit. I felt honored that each
family allowed me to join in the care of their
loved one. I felt emotional seeing how truly
grateful our patients are for the care the team
provided. Amanda Jerome, MD Class of 2006
To be honest, I felt blessed that my loved ones
and I are healthy and alive. I felt sad to see
that all these people are dying, but at the same
time, I was encouraged by their strength to
continue to smile and live despite knowing that
death is so close. Then I started feeling a bit
immature and stupid to worry and obsess and get
upset over little things in life. I am going to
appreciate what I have. Purti Papneja, MD Class
of 2006
I thought about myself as a future physician and
where my place would be in a setting like this.
Will I be the busy type, too caught up in coughs
and colds to take the time to visit my dying
patients? I thought back to a kind doctor in my
hometown who took that extra trip out of the
office to visit my grandmother on her deathbed
and how my family still appreciates his kindness.
Will I forget about the dying since nothing I
will be able to do will lead to cure? Will I
simply sign a morphine script and rush off in the
other direction? I thought about the point where
medicine and humanity interact and pondered how
one can disconnect in so many situations and
forget about the burden of illness in our
patients lives. Mary Jane Smith, MD Class of
2006
I felt sad. As a medical student, I havent been
exposed to a lot of death yet. In my personal
life, I have never lost someone close to me, so
the dying experience is quite foreign to me. A
few weeks ago, my father was diagnosed with
metastatic colon cancer, and for the first time
in my life I have had to face mortality. I
always knew that learning to deal with death
would be the most difficult aspect of medicine
for me, and now it has become a very personal
experience. I realize that it will be much more
challenging to face these medical issues as I
learn to cope with my own feelings about my dads
illness. Angela Novena, MD Class of 2006
I left the room feeling weird. I didnt like to
have to be involved in the delivering of bad
news, but I felt like Dr. M had done a good job
of it. After seeing this patient and the role of
the palliative team, I left the hospital with the
feeling that I wanted to be able to deal well
with patients who could benefit from palliative
care. I thought about my Grandpa who had just
gone into hospital a couple days ago, 91 years
old with pneumonia. I felt like we should all
stop and think about our lives more and how
fragile they truly are. I felt like I had
experienced an emotional rollercoaster over this
couple of hours, and I could only imagine how he
would be feeling -- after all, I can go home to
my family and he can only worry about how his
family will survive if he doesnt. Carol Potter,
MD Class of 2006