Reimagining Person-Centred Care—In the Public Square

Abstract

In 2010, I began making monthly hospital visits to receive infusions of Tysabri, a drug designed to slow the progression of MS. Since that time, I have had many different experiences of Person-centered care in the public health system. As a patient I expect high-quality care that is safe and valuable in my treatment plan, however, the Australian Commission on Safety and Quality in Health Care goes so far as to describe Person-centered care as being an ideal experience for patients, their carers, and family. The focus of this respectful and responsive care is the preferences, needs, and values of individual patients. Since March 2020, I have been acutely aware of how a global pandemic shapes the experience of being in a hospital. As I attended my treatment in August 2021, news that our current lockdown was being extended to include a curfew, instigated a shift in the virtual boundaries I rely upon in the ward in my experience of Person-centered care and the hospital was briefly hybridized, becoming a virtual public square. I was called upon to see and care for others, rather than prioritize my own needs. In the following days, I made art to make sense of the experience and reimagine my expectations of Patient-centered care during a global pandemic. This paper employs image making in a Practice-led inquiry to consider the reciprocal nature of Person-centered care and addresses some of the implications for this kind of care from a patient’s perspective.

Introduction

In 2010, I began making monthly hospital visits to receive infusions of Tysabri, a drug designed to slow the progression of Multiple Sclerosis (MS) in my body. Since that time, I have had many different experiences of Person-centered care (1,2) in the public health care system. While I expect high-quality care that is safe and valuable in my treatment plan the Australian Commission on Safety and Quality in Health Care describes Person-centered care as being an ideal experience for patients, their carers, and family (3). The focus of this respectful and responsive care is the preferences, needs, and values of individual patients. Since March 2020, I have been acutely aware of how a global pandemic shapes the experience of being in a hospital. As I attended my treatment in August 2021, we were hearing the news that the current lockdown we were living with was being extended to include a curfew. As staff and patients both digested the implications of this shift in virtual boundaries the hospital was briefly hybridized, becoming a virtual public square for the airing of different emotional responses and political views. I was called upon to see and care for others, rather than prioritize my own needs. In the following days, I explored the nature of this experience and the emerging questions about person-centered care during a global pandemic within my Reflexive Studio Practice. Within this methodological framework, I engaged material and embodied knowing to make sense of the experience and to reimagine how I might participate in a healthcare system that prioritizes Patient-centered care. I am now finding words to articulate and communicate the realizations that have to unfolded within the creative process (4).

Taking Care, as a Patient

I receive my treatment as a day patient in a large public oncology ward, alongside a discreet grouping of 5 other people. The only semblance of privacy here are curtains that can be drawn to help us avoid seeing or be seen by other people. Of course, we can still hear, and in hearing, we remain witnesses to one another’s stories as they bleed through these makeshift boundaries. No one bothers to close the curtains in this ward and each time I am here I do my best to stay present to my own needs while bearing witness to the needs of others. This time the woman next to me is dozing in the chair and snoring. It’s not easy for her body to breathe while she sleeps and so she snores. I don’t know her name, but she is driving me crazy. I am increasingly annoyed each time she breathes, so I look away and don’t speak.

In the next chair there is a woman wearing a red winter coat and a wide brim black hat, trimmed with large feathers and bows. The hat really belongs at the Spring Racing Festival, but today it is here, on a winter’s day in an oncology ward. The wearer of the hat becomes self-conscious and speaks loudly, I probably look like a clown, but when I heard about the curfew I thought, I am wearing my hat! She sounds scared but goes on, and on. Let me know if I am talking too much! The nurse assures her that it’s fine for her to talk. I want to say, It’s not fine with me—I don’t want to hear your fear. But I don’t.

A man on the other side of the room inquiries about the safety of the COVID vaccine for people who are immune suppressed, and suddenly there is a forum for discussion about the impact of the new restrictions, the rights and wrongs of our situation. As nurses tell us about their families and children missing birthday parties, we are all wondering how we will cope. An argument seems to be breaking out as patients and staff are all upset about the injustice and wondering who to trust. Voices become louder, and stories shared become increasingly personal. Fear bleeds into this sterile place, entangles with nervous laughter, and the mood becomes hilarious. There is nothing ideal about the experience of being a patient here and now.

I don’t want to be here, but I can’t step away. I witness the boundaries between us dissolve and I wonder if I am safe. I feel the focus of our shared attention drifting away from my individual medical needs, as patients work to calm and care for the staff. My individual need for safety in the form of calm, clear attention to the medical procedure has been subsumed by a communal response to publicly generated fear of a global pandemic.

Taking Time, in the Studio

Once it is over, I am an artist again and I return to the studio to make sense of what just happened. Yi-Fu Tuan (5) claims that whilst our lived human experiences have immediacy they lack permanence. This means that there is an ephemeral quality to all of our human experience as it perpetually passes from the present moment into the past. Art lends the quality of durability to our transient lived experience and so we engage with art to render a sense of order and coherence amid chaos. While that moment of experience has passed, as I walk past a blank canvas in the studio, I feel a strong desire to make a mark, not a painting, just a mark. Before long it is a series of marks, dripping and bleeding into one another. I see my experience in the ward, my felt sense of what it was like when this reliably safe and clinical place morphed into something else, a virtual public square (Figure 1). We all make and leave our mark when we engage in the public health system.

Figure 1.

Drip, drip, drip, … (detail). Graphite and acrylic on canvas, 150 × 90 cm.

We all have an impact on the experience of other people. As a patient in a shared ward seeing other people suffer, my tendency is sometimes to shrink back and focus on taking care of myself, while the staff attend to other people. But when the virtual boundaries that exist between me and the other dissolve, we can explore new and different ways of being together (6). As I continued to work with materials to understand this experience, I tried to hold space for both yellow and blue, as they moved more freely over the surface of a board. Rather than sinking into the canvas, the colors swam past, over and around the other. When yellow and blue are in such proximity, I begin to see green. It’s that simple, and that wondrous. The layers of different colors shed light on the other and create opportunities that would never otherwise have been possible. In the same way, the layers of our different and yet shared experience of vulnerability in a global pandemic lead have been overlayed. I wonder if it is time for a form of person-centered care that has not been possible before; care that neither privileges the individual, nor the experience of many people over one person (7).

Care Taking, in the Public Square

It sometimes takes a global pandemic to remind us of our need to rely upon and care for other people in the world. Just as when blue and yellow meet we see green, so the experience of caring and being cared for suggests a new possibility of care as a reciprocal relationship, both for, with, and alongside other people, rather than a service delivered to and received by an individual. As a patient whose needs matter, I am also the caretaker of my own story. If I accept that responsibility, then I am challenged by the risks I take in privileging my needs over the needs of others. Ideal patient care can never really be an individual experience because I am an active participant in my own care. As I sit in a public ward in the middle of a pandemic, I am always actively engaged with whatever calls my attention, whether it is my own singular collapsed vein, a fancy hat in the corner, a snoring neighbor, or a communal response to a public lockdown. I can choose to be irritated and angry when the focus of shared attention is drawn away from me, or I can choose to simply be aware of what is real and happening for the people with whom I share the room. To choose to accept what is really happening is to caretake the moment (8) that we share, as side by side, we work towards solutions for whatever challenges our individual and communal health.

When I think about person-centered care in this way l can choose to live into any situation, with empathy and respect for other people, welcoming the experience of difference as a new way of seeing what is real (Figure 1) and what is here (Figure 2). As I reflect on this experience and the learning that emerged in the process of making art, I am wondering if this form of care requires both patients and carers to be willing to see each other as a whole people, making space for all the complexity and vulnerability that may entail. Person-centered care is about people, more than one person, and sometimes about many, so to be ideal, this care must be reciprocal. As a patient who calls upon the healthcare system throughout a global pandemic for regular and routine care of chronic illness, I need to both experience and express quality care. When the experience of being in a hospital is messy and chaotic, it is possible to lean into it rather than shrink back and learn to see one another simply as people who have unique experiences of giving and receiving care in the moment we share. The creative tension of these moments may well be enough to challenge our virtual boundaries and reveal new ways for us to be alongside one another, as people living, healing, and sometimes even dying, in the public square.

Figure 2.

A new way of being together. Acrylic and ink on board, 30 × 20 cm.