Transcript Weaving the Narrative into an UG PC Curriculum

Division of Palliative Care
Department of Family Medicine
Faculty of Health Sciences  McMaster University
Why Study Narrative?
• Narratives provide meaning, context, and perspective
for the patient’s predicament.
• Study of narrative offers the opportunity to develop
unique understanding
• In the educational process, narratives are
memorable, grounded in experience, and encourage
reflection
Incorporation into Curriculum
• As of January 2005, students are required to write
about their experience with the palliative care site
visit
• The narrative exercises encourage trainees to reflect
on what patients experience in illness and what they
themselves undergo in the care of sick and dying
patients
• Discussion of narratives often act as springboards for
further dialogue during students’ second tutorial in
palliative care
Observations & Reflections
• Students have provided positive informal feedback on
the narrative exercise as an effective method to
facilitate making sense of the site visit experience
• Some students favoured the freedom of the story
format; others liked structure and guidance of senses
approach
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
Sample Narratives
Incorporation into Curriculum
• McMaster medical students currently perform one
half-day site visit to a palliative care setting in order to
have direct patient contact
• To date, the experience has largely been
observational with occasional opportunities to
interview patients
• The site visit is book-ended by an introductory tutorial
on pain & symptom management and a second
tutorial on broader end-of-life issues (e.g. ethics,
goals of care, personal death awareness)
Two Formats
• Story: Students write about the site visit in prose,
encouraged to comment upon what struck them,
touched them, moved them in “It was a dark and
stormy night” format
• Senses Approach: Students write brief descriptions
under the headings: “What I saw”, “What I heard”,
“What I felt”, “What I thought”
Observations & Reflections
• Most students reticent to read aloud their narratives
in small group tutorial despite general comfort with
tutorial approach to learning. We speculate their
narratives reveal the self and an intimacy atypical of
their usual tutorial content.
• Experience to date supports our supposition that we
not only live and die but learn through narrative.
Formal evaluation is still to be undertaken but
perhaps the words of our students already tell us the
true story.
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
patient’s 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
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 couldn’t 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
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 felt sad. As a medical student, I haven’t 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 dad’s illness.
Angela Novena, MD Class of 2006
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. I’m 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 he’d 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 wasn’t facing up to reality. Dr. M, however, said she was sure he knows what’s really going on. He’s
making plans, organizing supports for his family, as he always has.
When we go into his room, we put on gowns and gloves because he’s 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
room’s silence. Only after we find seats around the bed do we notice there is no white noise in the room.
There aren’t 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. He’s 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 he’s doing. She’s
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 don’t belong here. I’m a student watching a relationship progress. I likely won’t 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 I’m imagining he’s thinking dramatic things because
I’m 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 can’t 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.
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
“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.”
I wonder if he’s always asked little out of life. If he was always content. If he thought his life had been and still
was worth it.
Stella Lee, MD Class of 2006
I left the room feeling weird. I didn’t 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 doesn’t.
Carol Potter, MD Class of 2006