Continuing our series, The Arts in Palliative Care, where we look at how the arts in palliative care settings can be a powerful and effective way of addressing the practical, psychological, social and spiritual issues that face people at the end of their lives.
The Department of Palliative Medicine, University Hospital Bonn, Germany, invited medical and literature students to collaborate in an innovative storytelling project with patients. Michaela Hesse MSc explains.
Literature can have an impact on a single reader but equally on the thinking of a whole generation – for example, Dostoevsky’s The Brothers Karamazov or Hesse´s Steppenwolf. Books often invite us on a journey to unknown realms. In the project at our palliative care unit, we put it the other way around. We wanted to open a new world by inviting students of comparative literature and linguistics and medical students to collaborate with each other and to interview a patient receiving palliative care. They were asked to write a story based on what the patient told them. This pilot study ran from October 2016 to June 2017.
We admitted 16 students from each discipline: comparative literature and medicine, and paired them up. The 16 pairs of students attended four workshops dealing with an introduction to palliative care, interview techniques, transcribing and writing. The workshops were facilitated by both medical and literature professors and gave insights into two intellectual domains: humanities and science – both operating with a very disparate set of technical terms and vocabulary. This was the first challenge for all of us. Each pair interviewed a patient who was receiving palliative care – either in the palliative care unit or from the home care team. We offered supervision and a workshop for reflection and evaluation of the project.
I want to share some quotes from the evaluation of the project:
- Student: “Most impressive to me was how open and honest patients were reflecting on their lives.”
- Student: “I’ve gained the insight that every life in itself is important (also my own) and that behind every patient’s story is a unique, truly-lived life.”
- Student: “I’ve learned that many things get a new significance with a life-limiting disease. I want to take this into my own life and start to appreciate the small things.”
The 16 stories written by the students took a wide range of different approaches; some start like a novel, some are more like a biography. To give an idea here are some of the stories’ beginnings:
“I always wanted to be different. That sounds a little arrogant but that is why I always felt different and that is what mainly made up my life.”
“H., where are you hanging around? The horses do not feed themselves! H. stood in the haze of the shedrow [stables] and sighed thinking of the hard day’s work.”
“The telephone was ringing again and W. jerked. The short but piping tone made him jump. He put down the wrench and though the phone was not far away it seemed to be an endless time till he got there.”
“It is still one of the most beautiful places, said C. to her husband while sitting down at the table in the small restaurant.”
I don’t know how you feel about it, but I am curious and would love to read one or more of these stories. We wanted to ask patients for permission to publish their story, but sadly many of them died quite soon after the interview before they were able to grant permission. However, to us, it was a successful pilot study and we think it is worth doing it again. Patients enjoyed spending time with the students and with narrating their story. Students told us they learned a lot about themselves and were pleased to have this experience with the patients. We are still analysing the material and will publish the results.
- Contact Michaela Hesse by email.
- Read more post in the Arts and Palliative Care series on the EAPC Blog. Look out each week in January for most posts in the series …