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Art in Caring Spaces: Creative Transformation through Narrative, Performance, and Visual Design
Beauty in Death: Hospital Narratives as Forms of Care Aesthetics
Iris Parra Jounou & Pau Miquel i Diego
Every time a child dies in the pediatric palliative care service of Hospital Sant Joan de Déu (Barcelona Children's Hospital), the protocol recommends that one of the professionals from this service email the rest of the colleagues to share the news. Although palliative care professionals are routinely exposed to dying patients and death, some encounters can be emotionally and existentially problematic. With the aim to identify and understand the profound ethical aspects and emotional impact of these deaths on palliative care teams, we conducted a retrospective quantitative-qualitative analysis of 200 texts written by 56 professionals after a patient’s death between 2018-2023. One of the contents of the analysis was the narratives and descriptions of the scenario, the moment of death, the facial expressions, or the care that patients received while dying.
During the analysis, we found that the death and the scenario of care were often described in aesthetic terms. To interpret these results and understand why there seems to be a connection between aesthetics terms and care in those challenging moments, we use the theoretical frameworks of care ethics (Joan C. Tronto) and care aesthetics (James Thompson). According to the general definition of care given by Fisher/Tronto (1991), care is also defined as an act of reparation so we can live in the world as well as possible. Thus, we propose that these narratives contain a form of care aesthetics that can be understood as a reparation for the loss that these professionals are experiencing, which seems to be mitigated by the beauty and serenity described and an affirmation of the meaning of their professions. This groundbreaking contribution may help to create new understandings of healthcare professional care also in their aesthetic dimension as well as build bridges between bioethics, health, and the arts, blurring the lines between disciplines to comprehend something as delicate as profound as end-of-life care.
Iris Parra Jounou is a senior PhD candidate in moral and political philosophy at the Universitat Autònoma of Barcelona, where she is doing research on the ethics of care and its impact on end-of-life policies from a feminist and intersectional approach. She holds a degree in Nursing and a degree in Humanities. Her research interests include feminist bioethics, end of life, and the relations between arts and health. She is PI, along with Mar Vallès-Poch and Ramón Ortega-Lozano, of the research Project “Narratives of Patients who request Medical Aid in Dying” (BEC-2022-019). Apart from her academic research, she is a poet with five published books, a prologuist and translator, and a former member of the vocal group Ol'Green.
Pau Miquel i Diego is the head of the Spiritual and Religious Attention Service of the Hospital Sant Joan de Déu in Barcelona. He works in the pediatric palliative care unit as a spiritual counselor. He holds a degree in nursing and a degree in psychology and is a member of the Spanish Society of Palliative Care (SECPAL) and the Spanish Society of Pediatric Palliative Care (PEDPAL). He is the PI of the research project “Clinical Narratives of Death: An Opportunity for the Ethical Development of Healthcare Professionals?” funded by the Grífols Foundation.
The Beauty and Power of the Uniform in Theatre and Medicine (artistic/performative contribution)
Nora Korfker & Lotte van den Berg
We are an actress and a medical student/care ethicist. Our contribution is a performance in which we draw a comparison between the medical world and the theatre. In the performance, we will show the beauty and power of the uniform in these two worlds. The audience will watch two characters, a doctor and an actress, both performing their own morning routine. They move into the same room, but do not see each other. A conversation is held between the doctor and the patient (actress), highlighting first the doctor's perspective and then the patient's perspective. In this, it becomes clear that the patient is subordinate to the doctor and feels unacknowledged. Later, the two characters meet again: the doctor goes to a performance of the actress. There the doctor is confronted with how the actress experienced the conversation and thus with her own behaviour. The doctor, during that performance, also feels unacknowledged by the actress. As a result, she thinks back on the conversation and comes to the conclusion that the patient must have felt the same way she feels now. The message of the performance is that power is enclosed with wearing a uniform. (Doctor: white coat; actress: costume). It is important to be aware of this, break through it and reciprocate with the other. After the performance there will be a small piece for the audience to read in which the care ethic background of this performance will be explained in more detail.
Nora Korfker, 24 years old, graduated in 2022 from the acting department at HKU Utrecht University of the Arts, the Netherlands. She is active in the Dutch theatre and movie scene in the Netherlands. She is not only an actor, she also makes theatre herself. Theatre is about telling stories and making people aware of subjects they may have never thought about. She loves to combine her strengths with Lotte on this subject.
Lotte van den Berg, 25 years old, graduated from the Master in Care Ethics and Policy at the University of Humanistic Studies in Utrecht, the Netherlands, and is currently completing the master of medicine at Erasmus University. She will complete her final elective internships in (acute) psychiatry and rehabilitation medicine. For the Master's in Care Ethics and Policy, she wrote her thesis on having a chronic illness in the physician world, partly from her own experiences as a chronically ill doctor-to-be. She recently published an article on physicians living with chronic illness in the physician world. Co-written with Dr. Alistair Niemeijer and Prof. Alice Schippers, the article was published in the Dutch Journal of Health Care and Ethics.
Art in Hospitals: The Aesthetic-Social Turn of Caring Space
Eric Fan Feng
Visual art in hospital settings looks at the role of overlapping physical, social, and symbolic environments in producing a caring milieu. While architects have created spaces that help the inhabitants of hospitals, art has become another means of escalating the environment.
Appointed as the visual consultant in interior design and landscaping, I have been involved with the ongoing design work of the Chinese Medicine Hospital in Hong Kong. This paper uses first-hand working experience in creating art in this hospital, utilizing the creative process of five public art commission projects as an example to demonstrate how hospital artworks reveal today's caring space's aesthetic and social transformation. The aesthetics of Chinese Medicine Hospital is deeply rooted in Western caring tradition and Eastern therapeutic philosophy. In traditional Chinese medicine, healthcare is a delicate relationship between patients and medical professionals, requiring the application of medical skills tempered with sensitivity to the emotional human being. Fundamentally, art in the caring space has the same goals as therapy: socialization, communication, healing, appreciation of life, and even, in some respects, an affirmation of spirituality. The art projects in Chinese medicine hospitals are being developed with the principle of care. Its intrinsic value and instrumental worth give a renewed sense of community and civic pride. Disclosing the creation process of these art projects shows how hospitals have stepped outside their primary function as care-giving institutions to take on a broader social role. This may involve the artworks representing or reflecting existing community aspirations or promoting aspirations that need stimulation. With the help of the caring art projects, hospitals are developing a new social and cultural part of caring in their communities.
Dr. Eric Fan Feng is an artist and project officer of Comparative Cultures of Care: An Interdisciplinary Projectat the Faculty of Humanities at the Education University of Hong Kong. Before joining EduHK, he was an Associate Professor of Art at the Academy of Arts & Design, Tsinghua University. His work is in several public collections and has produced numerous public art commissions around China. His research interests include Ecological Art Practice, American Art history, Public Art & Visual Culture, Eco Criticism, and Environmental Humanities. In 2015, he was awarded the “East Asia Fellowship” by ARIAH (The Association of Research Institutes in Art History).
Location
23-25 January 2025
Kontakt der Kontinenten, Amersfoortsestraat 20
3769 AS Soesterberg
Online
23-25 January 2025
Kontakt der Kontinenten, Amersfoortsestraat 20
3769 AS Soesterberg
Online
Contact info Louis van den Hengel
Images homepage: Merel Visse, Christine Leroy
design website: Johanne de Heus and Marielle Schuurman