Unless Something Goes Wrong: Making Art to Understand and Mitigate the Risk of Therapeutic Inertia in the Treatment of Multiple Sclerosis.

In the long-term management of a degenerative illness there is a risk that the approach we take to treatment can be characterized by therapeutic inertia (TI). With no evidence of disease progression clinicians can be reluctant to make a change to treatment regimes. This can lead to less choice and suboptimal outcomes for people with multiple sclerosis. The risk of TI is however greater when clinicians have an aversion to ambiguity and a low tolerance for uncertainty. (1) This article is an art-based inquiry into the possibility of TI in decision making when the advice from my neurologist was to stick with the treatment unless something goes wrong. (2) Through a unique process of rusting an existing canvas, the article reveals that the phrase, unless something goes wrong, is an expression of openness to uncertainty and ambiguity. (3) Art making offers the artist an opportunity to lean into and grow and capacity for tolerating uncertainty and ambiguity, thereby minimizing the risk of TI.

Reimagining Person-Centred Care-In the Public Square.

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.

Seeing and Being Seen: The Impact of Art Making on the Experience of Isolation and Fear in Patient Care.

A positive diagnosis for COVID-19 is a threat not only to the health of an individual but also to the community where the disease manifests. Rather than being the discreet experience of a few or some, many people now appreciate our shared vulnerability with the threat of uncontained and incurable illness in our midst. "In this era of unspecified isolation, contagious disease, and with no sign of returning to normal life soon, coronavirus is putting an adverse effect on people's mental health" (1). While managing the spread of COVID-19 has necessitated the use of social distancing and isolation a means of expressing care, equating care with the experience of fear and isolation can place unseen mental health burdens on inner resources for supporting the well-being of patients and those who care for them. Art can offer a remedy for this experience, lending the quality of durability to our fragile human experience and inviting us to extend the ways in which we see, think, and make sense of the world.

Healing in the Absence of a Cure.

This article offers a series of 3 vignettes exploring how art making has enabled me to understand my experience of the psychological and spiritual questions that have arisen throughout my diagnosis and subsequent treatment of multiple sclerosis (MS) in the private hospital system in Australia. The findings of the article indicate that the challenge to maintain a sense of identity that is separate to the experience of illness is critical for people who are living with MS and the language employed by health-care workers has a profound capacity to help or hinder this. Opportunities to make art in hospital supports the efficacy of prescribed medical treatments by enabling patients to exercise power in the midst of a process over which they have little or no control.

"Life Within the Person Comes to The Fore": Pastoral Workers' Practice Wisdom on Using Arts in Palliative Care.

BACKGROUND: Pastoral care (also chaplaincy, spiritual care) assists people to find meaning, personal resources, and connection with self, others, and/or a higher power. Although essential in palliative care, there remains limited examination of what pastoral workers do. This study examined how pastoral workers use and consider the usefulness of art-based modalities. METHODS: Qualitative research was used to examine the practice wisdom (tacit practice knowledge) of pastoral workers experienced in using visual arts and music in palliative care. Two focus groups were conducted. Thematic analysis was informed by grounded theory. RESULTS: Six pastoral workers shared information. Three themes emerged. First, pastoral workers use arts as "another tool" to extend scope of practice by assisting patients and families to symbolically and more deeply contemplate what they find "sacred." Second, pastoral workers' art affinities inform their aims, assessments, and interactions. Third, pastoral workers perceive that art-based modalities can validate, enlighten, and transform patients and families through enabling them to "multisensorially" (through many senses) feel recognized, accepted, empowered, and/or close to God. Key elements involved in the work's transformative effects include enabling beauty, ritual, and the sense of "home" being heard, and legacy creation. DISCUSSION AND CONCLUSION: Pastoral workers interpret that offering art-based modalities in palliative care can help patients and families to symbolically deal with painful memories and experiences, creatively engage with that deemed significant, and/or encounter a sense of transcendence. Training in generalist art-based care needs to be offered in pastoral education.