In Search of Stories

The story of your life

People who have terminal cancer are often not just struggling with the disease, but with many complicated emotions as well. In a joint research project, UMC Hospital and HKU are exploring how art creation and experience can help patients to regain a sense of meaning.
Project duration: July 2018 – July 2023

Where to turn to when you know that your life will soon be ended by an incurable disease? Such a premature end comes with many diverse emotions, and many patients feel that life has become meaningless. Talking about it can help. But in some cases, it might be easier to find support through artistic imagination. Two oncologists from Universal Medical Centre Amsterdam (AMC) called upon HKU to explore this possibility. Nirav Christophe and Henny Dörr, both working for the professorship Performative Processes, have joined them in the research project ‘In Search of Stories’. Supported by KWF Dutch Cancer Society, they are currently running a five-year pilot aimed at stimulating interaction between text, art, and personal life stories.

Transdisciplinary

In a staged process, Henny and Nirav match patients who have terminal cancer to a fitting artist. These artists – from writers and expressive artists to theatre producers and musicians – have already gone through an intensive training course to prepare for working with the seriously ill, their family and healthcare professionals. ‘We offer them the tools for transdisciplinary working’, says Nirav. Mental healthcare workers are also involved in the training, so that experts from various domains are brought together. ‘The artist is asked to craft an artwork in cocreation with the patient, without letting the creative process be driven by feeling ‘pity’ for the other. They must learn to deal with all emotions involved and allow these feelings to become part of the artwork. Another possibility that the artists will have to keep in mind, is that there will be occasions where people pass away during the creative process. However, this does not have to mean the end of the creative process for the artist, which is comforting, yet also confusing.

Sensuous

The artist starts by entering a long-form interview with the patient, focusing on their personal life experience. First step is selecting a meaningful story from world literature, then adding more personal stories progressively, allowing the patient to gradually construct a personalised story. These can be stories in the literal sense, expressed in a book with stories, poems, emails and pictures – as one participant has recently created with a writer. Another patient matched up with a sculptor and created a large stone, illuminated from the inside, to be placed in the garden. A third joined a textile designer to seek a sense of safety and shelter: this led to a soft coat with a patchwork that depicted her life, in which she did a photoshoot for her family. Sensory experiences are an important part of the creative process: it’s how these projects significantly add value to the usual mental support through conversation.

Mixed impact

In Search of Stories has multiple purposes. For the people who know they are in their final days, the goal is to improve the quality of the time they still have left. The project offers them a creative tool to interpret their own life story and find new meaning. The fact that one participant stopped their chemo therapy to become fully dedicated to creating the art, illustrates the impact it can have. But there is also an artistic gain: the first works will be displayed in a museum early next year. And meanwhile, the researchers of HKU are discovering how transdisciplinary cocreation works and how to integrate this in the curriculum of academies. Nirav: ‘Eventually we will train artists more and more for this kind of practice. We are currently collecting the ingredients for innovation in education and healthcare. After finishing the pilot next Summer, we will publish more about this. And of course, this has to include a proposal for scaling up. It would be wonderful if any hospital will be able to offer this method on a structural basis.’

Partners

Universal Medical Centre Amsterdam, Maastricht University Medical Centre, Amsta, Spaarne Gasthuis Haarlem, Radboud University Nijmegen, HKU Utrecht University of the Arts, KWF Dutch Cancer Society, Stichting Genees-Kunst, Patient federation SPKS

(Lecturing )researchers HKU

Nirav Christophe, Henny Dörr, Marloeke van der Vlugt, Ruud Lanfermeijer, Daniela Moosmann, Tjallien Walma van der Molen, Marcel Dolman, Falk Hübner

Supported by

KWF Dutch Cancer Society