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					                                                                                                                       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
                                                                                                                                                                                                                                              Sample Narratives
          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

				
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