Weaving the Narrative into an Undergraduate Palliative Care Curriculum
Division of Palliative Care Alan Taniguchi, MD, CCFP, ABHPM, Palliative Care Physician
Janet Noble, MSW, Director, Hamilton Hospice Palliative Care Network
Department of Family Medicine
Faculty of Health Sciences McMaster University Amanda Jerome, MD Student, Class of 2006
Division of Palliative Care, Department of Family Medicine, McMaster University
Incorporation into Curriculum
Why Study Narrative?
Feeling tears fogging my eyes and What I saw: Palliative Care Reflection
• McMaster medical students currently perform one threatening to fall down my cheeks, I I saw people in the process of dying, some more prepared than others. I saw tears
• Narratives provide meaning, context, and perspective half-day site visit to a palliative care setting in order to desperately started looking at the floor. I of sadness and frustration and expression of grief on the faces of patients and their This man looked well. I never would have guessed that he was dying. “Dying” is a term I would use to
for the patient’s predicament. have direct patient contact am not going to cry. Now is not the time to families. I saw smiles and laughter on the face of a patient who, although in the describe frail ladies in their late 80s who have really bad COPD and CHF. This 49-year-old man lay in bed
• Study of narrative offers the opportunity to develop • To date, the experience has largely been cry! I managed to recompose myself by stages of dying, is still very much alive, hopeful and at peace with what is to come. I looking as though he could clock your average guy with one punch. And he was my first official “palliative”
unique understanding observational with occasional opportunities to focusing back on the patient and her family, saw compassion on the faces of caregivers and looks of appreciation on the faces of patient.
• In the educational process, narratives are interview patients and it was then that I first realized that there both patients and their families.
• The site visit is book-ended by an introductory tutorial was peace there, and that they found their What I heard: Bone metastases. I’m not even sure they knew where the cancer came from. But “Joe” had such bad pain in
memorable, grounded in experience, and encourage his back and neck that he had been operated on at least twice, the second time being called a `failure’. He
reflection on pain & symptom management and a second tranquility and acceptance, and that the one I heard the sobbing of a dying wife and mother worried about who would take care of was now paralyzed from the waist down. As far as his docs and nurses could tell, his future was bleak. But
tutorial on broader end-of-life issues (e.g. ethics, who was tormented was actually me. It her daughter when she is gone I heard the laughter of the same dying wife and Joe always seemed happy with the treatment he was getting, optimistic that he’d be getting better and going
goals of care, personal death awareness) made me realize that while there is a mother (still very much full of life) as she joked about how she molded her husband home to take care of his wife with an anxiety disorder and his 11-year son. Some nurses seemed irritated that
tremendous sense of loss and sadness in to her liking early in their marriage. I heard the sobbing of her husband as she 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.
death, there can also be peace and mentioned, for the first time, that someone should contact the parish priest, for it
blessing, and that it actually is up to each of would soon be time to administer the last rights.
When we go into his room, we put on gowns and gloves because he’s VRE positive. Yet another barrier
us to find and help find that contentment I heard the sadness and frustration in the voices of the grown son and daughter of a between him and the outside world. The room is small and stark, painted a turquoise green colour. There is a
and serenity. dying mother as they struggle with the cold practicalities of homecare and funeral flood of white light from the window, the morning after a snowstorm. For a time, the bright light drowns out the
Diana Blank, MD Class of 2006 arrangements, and who to call for pronouncement of death. room’s silence. Only after we find seats around the bed do we notice there is no white noise in the room.
I heard a dying man speak Italian. None of us understood Italian, but the sadness 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.
and frustration in his voice needed no translation.
I saw a sick woman crying alone in bed
Incorporation into Curriculum Two Formats with a barely audible voice, wishing just
I heard compassion in the words and voices of caregivers, and appreciation in the
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,
words and voices of patients and their families. no lines, no monitors. Just the TV. He looks pleased that we are there. Dr. M asks Joe how he’s doing.
one of her children would come see her.
What I felt: She’s gotten to know him, and I can see there is trust between them. He trusts that she is there to lessen his
She is lonely and afraid…. I heard pain and treat him with dignity. She trusts that he will allow her the chance to help.
I felt intensely sad at times with one dying patient, especially when listening to her
• As of January 2005, students are required to write patients speaking intimate, personal express her feelings of love for her husband and children, and her feelings of
• Story: Students write about the site visit in prose, words of truth, honesty, and deep
about their experience with the palliative care site sadness for having to leave them. I felt sorry for her husband and her children who 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
visit encouraged to comment upon what struck them, feelings…. I thought of how strong the seeing him again. I say nothing.
touched them, moved them in “It was a dark and would be losing their family pillar.
• The narrative exercises encourage trainees to reflect families of these patients must be trying
stormy night” format I felt frustrated that I couldn’t communicate with the Italian gentleman.
on what patients experience in illness and what they to be; how the little things in each The bedside TV is on but there is no sound. He is not paying attention anymore, but he was watching Fashion
What I thought:
themselves undergo in the care of sick and dying • Senses Approach: Students write brief descriptions patient’s day impact body, mind, and Television. As Dr. M and Joe discuss the option of starting a morphine pump, the TV plays scenes of thin,
I thought about how difficult it is to deal with the death of a loved-one. young, rebelliously bored-looking models strutting down a catwalk. Images of beautiful, immortal people flit by.
patients under the headings: “What I saw”, “What I heard”, spirit…. I felt honored that each family
“What I felt”, “What I thought”
I thought about how useful and often helpful it is to talk in a frank manner about I wonder if that makes him sad or resentful or indifferent. Or was he meditating on fashion as modern art? Or
• Discussion of narratives often act as springboards for allowed me to join in the care of their death. just thinking certain girls were hot and others not. Maybe I’m imagining he’s thinking dramatic things because
further dialogue during students’ second tutorial in loved one. I felt emotional seeing how I’m more shocked than he is that he will not live long.
palliative care I thought about how we can affect people in significant ways not only with
truly grateful our patients are for the care
medications and elaborate, advanced, expensive therapies, but with compassion in
the team provided. our words, our acts and our touch. I hear something about booking an MRI, and something about a pain pump. All I can remember is that
Amanda Jerome, MD Class of 2006 somehow, without use of any words like `death’, `the end’, `prepare’, `inevitable’ or `sorry’, Dr. M has nudged
Michael Hickey, MD Class of 2006 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.
To be honest, I felt blessed that my loved ones and I are healthy and alive. I Soon afterwards, I know it is almost the end of our visit. A pleasant silence fills the room.
felt sad to see that all these people are dying, but at the same time, I was I thought about myself as a future physician
encouraged by their strength to continue to smile and live despite knowing and where my place would be in a setting like “Would you like some music? I can bring in some live music!” What? How unexpected. Dr. M is offering the
that death is so close. Then I started feeling a bit immature and stupid to this. Will I be the busy type, too caught up in services of a live music group to erase the silence for a time. Joe smiles. “Just a radio would be nice.”
Observations & Reflections worry and obsess and get upset over little things in life. I am going to coughs and colds to take the time to visit my
Observations & Reflections appreciate what I have. dying patients? I thought back to a kind doctor 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
in my hometown who took that extra trip out of was worth it.
Purti Papneja, MD Class of 2006
the office to visit my grandmother on her
deathbed and how my family still appreciates Stella Lee, MD Class of 2006
• Students have provided positive informal feedback on • Most students reticent to read aloud their narratives his kindness. Will I forget about the dying since
the narrative exercise as an effective method to in small group tutorial despite general comfort with nothing I will be able to do will lead to cure?
facilitate making sense of the site visit experience tutorial approach to learning. We speculate their Will I simply sign a morphine script and rush off
narratives reveal the self and an intimacy atypical of I felt sad. As a medical student, I haven’t been exposed to a lot of death
• Some students favoured the freedom of the story in the other direction? I thought about the
their usual tutorial content. yet. In my personal life, I have never lost someone close to me, so the
format; others liked structure and guidance of senses point where medicine and humanity interact
dying experience is quite foreign to me. A few weeks ago, my father was
approach • Experience to date supports our supposition that we and pondered how one can disconnect in so 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
diagnosed with metastatic colon cancer, and for the first time in my life I
not only live and die but learn through narrative. many situations and forget about the burden of a good job of it.
have had to face mortality. I always knew that learning to deal with death
Formal evaluation is still to be undertaken but
would be the most difficult aspect of medicine for me, and now it has illness in our patients’ lives. 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
perhaps the words of our students already tell us the Mary Jane Smith, MD Class of 2006 deal well with patients who could benefit from palliative care. I thought about my Grandpa who had just gone into
become a very personal experience. I realize that it will be much more
true story. hospital a couple days ago, 91 years old with pneumonia. I felt like we should all stop and think about our lives more and
challenging to face these medical issues as I learn to cope with my own
how fragile they truly are. I felt like I had experienced an emotional rollercoaster over this couple of hours, and I could
feelings about my dad’s illness.
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
Angela Novena, MD Class of 2006
will survive if he doesn’t.
Carol Potter, MD Class of 2006