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 CareDepartment of Family Medicine Faculty of Health Sciences  McMaster University Sample Narratives 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 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 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 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. “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 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 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 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