A message to leave behind
A medical student’s project exemplifies the importance of legacy work in palliative care, and at any stage of life.
When I arrived at the hospice around 10 a.m., “Please pass me a beer” was the first thing Lucio said. That wasn’t how I was expecting to begin the conversation about the Making a Legacy project, but then again, it wasn’t about me. The elderly Italian gentleman, reclined in his hospice bed with half of his breakfast still sitting on the tray in front of him, was still living life on his own terms. I passed him a Peroni (after checking with the nurses like a typical nervous medical student), and sat down to explain the project.
I began the Making a Legacy palliative care project in March, as part of my Flexible Learning project at UBC medical school. After the sudden death of my father a year prior, topics surrounding death and bereavement caught my attention easily. I met Dr Pippa Hawley, the leader of the project, who explained the importance of legacy work in palliative care. Legacy work is simply the act of creating something to leave behind after your death—whether it’s a video, letter, or art piece. Dr Hawley introduced me to a computer application called RecordMeNow (www.recordmenow.org), created by Vancouverite Gaby Eirew, that allows people to create their own legacy in the form of a video. RecordMeNow is easy to use, free for anyone, and can be used at any stage of life, whether or not the person already knows what they want to say. There are approximately 40 preset questions on topics such as childhood, career, and advice and wishes for the future. It’s also easy to create your own questions. Once you select a question, the app records your answer as a video clip using your phone or computer’s camera. It then compiles the video clips and formats them to be transferred onto a CD or USB to be given to loved ones.
Lucio seemed interested in creating a legacy project, so we replaced his breakfast tray with the laptop and got started. RecordMeNow starts with the easier questions: What is your full name? Who are your parents and where were they from? What was your home life like as you grew up? To create the questions, Ms Eirew asked 100 adults who had lost one or both parents when they were young what they wished they knew about their parents. Going through the questions in order feels like taking a short trip through the person’s life, starting from their childhood through to their career and the birth of their children, and onto wishes they have for their loved ones. Lucio didn’t have too much to say at the beginning, but as we chatted and went through various questions that he found interesting or funny, his answers began to blossom. To the question, “What words or phrases do you use often?” he answered, “Jesus! I shouldn’t say it often, but I just do!”
We worked on the project over a couple weeks because he found the sessions fairly tiring. On the third visit we came to the question, “Is there a place you go where you like to think and reflect?” Lucio started tearing up as he spoke about how much he loved Queen Elizabeth Park, and how he would like his family to bring a photo of him to the park after he dies. We segued from there to more of the difficult questions, where he spoke directly to his wife and children about how proud of them he was, and how he wished for them to still enjoy life after his death. It is amazing how during the most difficult circumstances people can often feel the most grateful. Lucio talked about how lucky he has been in his life, and how much he appreciated and loved his family. His eyes were not the only teary ones in the room.
While I used RecordMeNow in a hospice setting for my project, it is intended to be used by anyone, as a sort of emotional life insurance. It could also be suggested to patients who are discussing advanced care planning with their family physicians. I did my own recording recently; even though I’m not planning on dying anytime soon, neither are most people who write wills and purchase life insurance. Unfortunately, I know all too well that our lives can end suddenly even when we think we’re perfectly healthy; arrhythmias and accidents do happen. Creating a legacy project forces you to confront your own mortality, which can create clarity for the future, especially if unexpected illness or death occurs.
I am grateful to Dr Pippa Hawley and Ms Gaby Eirew for developing this project, and to the patients I worked with for teaching me how much strength and love can be present at the end of life.
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The patient’s name and identifying details have been changed for confidentiality. Ms Wind’s project and the application RecordMeNow are not for profit.
This article has been peer reviewed.
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Ms Wind completed her BSc (Hons) degree in biochemistry at the University of British Columbia, with a focus on diabetes research. She is currently a second-year medical student at UBC. Her professional and research interests include women’s health, developmental pediatrics, and palliative care.