Tracing Autonomy: a reflective approach in support of a person’s autonomy in life

Participants

For the purposes of this case study, Jeni and Kirsty are the key participants as mentees of Ben Colburn. In addition, the work was developed in close consultation with clinical palliative care staff (NHS band 7 and above) and arts and health practitioners. Working groups were also held with Enable and Sense Scotland, key organisations supporting people with learning disabilities and autism. Four patients accessing the Art Room at PPWH took part in a service evaluation of the Creative Arts Service using the Tracing Autonomy Framework.

Aims

The project has grown out of a reflection on small everyday gestures and conversations involved in creative mark making. What does it mean to make a creative mark, particularly at a time in life when a person’s independence and sense of control is diminishing due to deteriorating health and disability? And, as creative practitioners asking, how does the invitation to make a mark influence the mark that is made?

Aims:

• to develop a framework for reflecting on arts, health and clinical practice that foregrounds the concept of autonomy to ensure that the participant is author of their own creative experience.
• to offer arts and health practitioners a structured method to support new creative approaches and to challenge habitual modes of working by using autonomy as a guiding principle.

Methods

Tracing Autonomy emerged out of a process-based arts and health practice working with people living with a life-limiting illness and a series of reflective philosophical conversations on the subject of autonomy with Prof. Ben Colburn. Very practical concerns of what takes place in the art room were related to key philosophical ideas that underpin autonomy.

During this time we covered several related philosophical themes: autonomy at end of life, threats and ideals to autonomy, voluntary and involuntary choices, conflict, authorship, responsibility and the distinction between limitations and parameters, particularly in relation to disability. This provided us with a deeper understanding of what we practice on a day-to-day basis and the transformative potential of a process-based approach.

In addition to this, the holistic assessment used within palliative care that considers the physical, psychological, social and spiritual aspects of a person’s life offered us a framework to expand upon and tailor in relation to our creative practice. We did this by incorporating factors we considered to be important during the art sessions with patients and families, namely dialogue, environment and sensory factors. By considering these factors we were able to ascertain whether the creative approaches we offered in the art room were truly in support of a person’s autonomy or not. We referred to this expanded holistic tool as the ‘Holistic Terrain’ we and others were working within.

Creatively the artists see their role as being similar to that of supporting an individual’s self-directed studio practice. It is important for us to be able to adjust practice in relation to the person that sits in front of us. To be able to move into and out of a sphere of influence recognises that some may need more creative support, or a different kind of creative support, than others and that this may change day to day, moment by moment, as a person becomes less well. Central to this approach is supporting a person to direct and to be author of their own practice. The quality of dialogue that takes place around this process with a person shapes that experience. Our work with Ben provided us with a language and practical tools to ensure that a person’s autonomy was at the fore of this process. We asked what supported or undermined a person’s autonomy by considering four characteristics of autonomy: choice, value and relationships; and when these are supported well, the fourth characteristic of autonomy – authorship, when the person is author of their own experience.

A public exhibition of patients’ art work at The Studio Pavilion at House for An Art Lover enabled us to apply and review the effectiveness of this approach to supporting autonomy.

Artistic Outputs

‘all threads lead back to here’ was an exhibition of art work made by people who attend the Art Room, PPWH, held at the Studio Pavilion at House for An Art Lover, Glasgow, in October 2018. The making of this exhibition directly applied some of the key ideas around autonomy by considering how to bring a person on board with us as a colleague. In other words, as long as that individual can trace a thread back through the journey of making as one that they recognise as their own, you can ensure that this process has been in support of their autonomy.

Two Tracing Autonomy workshops were held at PPWH with invited practitioners and academics from a range of fields: Alzheimer’s support, palliative care (adult and paediatric), pre- and post-bereavement support for young people, young people’s oncology, anthropology, philosophy, social work, creative writing, visual art and performance.

A Tracing Autonomy workshop was held at Check In Check Up, Crawford Art Gallery, Cork in 2018 with arts, health and clinical practitioners from across Ireland.

Transferable resources: Tracing Autonomy Reflective Framework and Tracing Autonomy Workshop are available to download from www.tracingautonomy.net

Evaluation Methodology

Throughout the research process we reflected on our practice as artists working in a palliative care context using the concept of autonomy as a reflective methodology. Autonomy provided us with guiding principles to help ascertain to what degree our creative practice was in support of the autonomy of others.

Throughout the project we were keen to learn from the people we are working with, the patients themselves first and foremost, but also from clinical staff and other professionals working in the fields of palliative care, learning disability and autism. This involved a process of synthesising and editing written material to present appropriate information to a range of audiences, including a poster presentation at the 2019 Scottish Partnership for Palliative Care annual conference ‘Provocation, Innovation and Eternal Truths’ in the Royal College of Physicians, Edinburgh.

Evaluation Outcomes

As artists working in a palliative care setting, the opportunity to be mentored by a philosopher has been hugely beneficial, particularly in gaining a very practical understanding and application of philosophical ideas in relation to creativity and the context of working with vulnerable people.

The project offered the opportunity to gain insight into our own working practices and to see how these cusped the experiences and practices of clinical practitioners working with people at the end of their lives. We found many areas in common with clinical colleagues, and by highlighting dialogue, environment and sensory factors we were able to offer a deeper understanding of autonomy and an awareness of the wider context of the person being supported.

In addition, Tracing Autonomy helped to inform the development of PPWH’s new clinical assessment tools to include GIRFEC / SHENNARI indicators and a new sensory communication tool. A mandatory staff training session on autonomy was attended by 70% of clinical staff at the hospice.

‘Any discussion around autonomy is very important and key to best practice. It enhances the quality of interaction between people.’

– Comment made by clinical practitioner, PPWH.

‘It goes beyond art. Because all those words in the holistic terrain are important and that is what takes you beyond art, it is expansive. There is the creative focus on what you are making, but these words relate to the person as a whole.‘

– Comment made by patient during Tracing Autonomy Service Evaluation.

It was an opportunity for us to critically reflect on our practice. How do we ensure choice and control when people face serious emotional, physical, cognitive and communication difficulties? Autonomy has the ability to shape the context of these choices so that they are in line with what matters to you as a person. It is important we consider the reasons people act or make decisions. For example, is someone doing something because they’re grateful, or they don’t want to offend you? As artists, these are important questions when embarking on a participatory exchange.

‘A meaningful small gesture is only meaningful if it allows itself to be seen as a self-critical, self-reflective process. The moment it starts to take its aims, acts and habits for granted, it slips quickly further away from being a meaningful act.’

– Mika Hannula, The Politics of Small Gestures: Chances & Challenges for Contemporary Art (2006)

Documentation and Dissemination

www.tracingautonomy.net

Instagram, Twitter, Facebook: @tracingautonomy

Partners

Prof. Ben Colburn, University of Glasgow; Studio Pavilion at House for An Art Lover