Collective Power: Tracing Autonomy, The Prince & Princess of Wales Hospice, Glasgow

| Anna Eaton

This year we have been part of the Culture, Health and Wellbeing Alliance’s Collective Power Award which recognises a project or programme in which partnership working has improved the health and wellbeing of individuals or communities using the arts and culture. 

We are big believers in collaborative working and the power of doing things together. We are running a blog series up until Christmas celebrating each of the brilliant projects nominated for the Collective Power Award. People from the heart of each project tell us in their own words what they’ve learnt along the way, what surprised them and what have been their favourite parts.

The seventh in our series is about Tracing Autonomy, from The Prince and Princess of Wales Hospice, Glasgow.

Tracing Autonomy is a resource for practitioners working within healthcare, and arts and healthcare settings. It offers a reflective holistic framework for thinking about how we interact and relate to others.

Tracing Autonomy grew out of a series of conversations around autonomy, creativity and end of life care, between artists Jeni Pearson and Kirsty Stansfield from the Creative Arts Service at The Prince & Princess of Wales Hospice and philosopher Prof. Ben Colburn, University of Glasgow. The project foregrounds autonomy as a model for supporting reflective practice for clinical and arts and health practitioners.

Input from practitioners working in the areas of palliative care, clinical practice, learning disability, autism and the creative arts have been key in shaping two transferable resources: Tracing Autonomy Framework and Tracing Autonomy Workshop Guide, available to download here.

Tracing Autonomy was piloted as a means for service evaluation with a group of patients at The Prince & Princess of Wales Hospice in Glasgow. Practitioners who have used the resource have reported it has had a big impact on them, broadening their understanding of holistic care and making them really consider what the word ‘autonomy’ means.

The project has been a collaborative effort between artists, hospice staff, academics, disability service organisations and art centres.

We asked artists Jeni Pearson and Kirsty Stansfield, the joint project leads, some questions to learn more about Tracing Autonomy. Here are some of their answers:

What has been your favourite thing about the project?

Our philosophical conversations with Ben have been the highlight for us. Ben has been so generous in spending time with us in the art room at the hospice.

Sometimes we would deliberately bring issues to the table to be discussed; something that we were grappling with in some way, and Ben would offer bite size pieces of philosophy that would be so helpful for offering a perspective that helped us move through the particular issue in a way that was appropriate and supportive.

We have both been working in the arts and health field for a number of years and these conversations really helped us move our thinking forward in a constructive way. It also challenged us to rethink certain aspects of our work with a new-found confidence.

Having an understanding of the central ideas of relational autonomy gave us confidence to articulate what approaches to practice either supported or undermined autonomy. We were able to apply this thinking while developing the Creative Arts Service’s recruitment process.

We were also able to apply some of the underlying principles of autonomy while offering choice to patients and when gathering feedback from the people we worked with.

Creatively we were able to ensure that a different approach to producing a professional, public exhibition of patients’ artwork at The Studio Pavilion at House for An Art Lover was in support of the autonomy of the people involved. We were able to monitor the effectiveness of this approach to supporting 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 that they recognise as coming from them, then you can be sure that this process has been in support of their autonomy.

We covered several related philosophical themes over our meetings: autonomy at end of life, threats and ideals to autonomy, voluntary and involuntary choices, conflict, authorship and responsibility and the distinction between limitations and parameters, particularly in relation to disability.

Another highlight for us was our conversations around autonomy with clinical practitioners at the hospice. In particular Liz Smith, Education Facilitator and Fiona Wylie, Lead Nurse for Strategy Implementation. Fiona is responsible for setting up a new service for young people living with life-limiting illness who are transitioning out of paediatric palliative care services into adult palliative care.

Through Liz and Fiona we were able to identify a huge amount of common ground in striving for the autonomy of an individual facing a life-limiting or terminal illness, and the word ‘autonomy’ began to be commonly used in multi-disciplinary team meetings at the hospice as a way of ensuring holistic care, where the patient is truly at the centre.

Around the same time the hospice were reviewing the “holistic patient assessment” to make sure that the needs of younger people were met. The Hospice’s new assessment tools includes GIRFEC / SHANARRI indicators and a new sensory communication tool, which has been incorporated into Crosscare, the digital clinical records recording system used by the hospice.

We were asked to contribute a session on autonomy as part of a training session for clinical staff on the hospice’s new holistic assessment tools and to contribute to the development of the new Sensory Communication Tool itself.

As we began to share their work with clinical staff at the hospice we found that environment, dialogue and sensory experience were areas that clinical staff had perhaps not always thought about as having the potential to either support or undermine a patient’s autonomy. The hospice had just moved into a newly designed £21 million building situated in landscaped grounds, so environment was particularly relevant.

It was great to be able to contribute to this important work. The clinical staff have so much experience working in such challenging circumstances, and we learned so much from them. The bringing together of creative and clinical practices has been of such value. It is something that we will keep building on within the education programme at the hospice and beyond through our links with Sense and Enable Scotland.

Have you made and learnt from any mistakes along the way?

We’re still working on making the language around autonomy more accessible. The idea of autonomy is generally understood but a lot can be revealed in the details. When working in a multidisciplinary team, and as artists within a clinical healthcare setting, we need to work hard to find the right language to talk about embodied or felt experience. Language can so easily exclude people and this is something we are still working on.

Early on in the process we had to work hard to figure out what people’s understanding of autonomy was and how it related to their professional practice. Even within a relatively small organisation it was really mixed so a lot of time went in to making sure we were presenting the material in the right way. It evolved as time went on and we were so lucky to be able to work in partnership with the hospice clinical team during this.

Has anything surprised you during the project?

I think we are very aware that the work has wider relevance beyond that of end of life care. Initially the project was quite focused on this sector and it was surprising when we began to realise that it could respond and have an impact elsewhere.

Initial conversations with Sense Scotland and Enable, and also artists working with Woman’s Aid were integral to this new understanding of the work and its potential to work in different settings. We have also started building links with public health and health inequalities.

We are living through such a difficult time at the moment, but our starting points are not all the same and that means that this situation is more difficult for some. The global pandemic has uncovered a lot in relation to health inequalities – BAME, gender inequalities, domestic abuse, death and dying and we find ourselves talking about these issues. We are able to think about these inequalities in relation to individual and relational autonomy and it is helping us think through these complex areas. Whilst this can be challenging at times, it feels exciting that potentially the work has this reach.

To find out more about Tracing Autonomy visit their website and read their journal blogs about autonomy and care during the pandemic. Including a powerful account of telephone conversations between Jeni and a patient at the start of lockdown.

Image provided by Tracing Autonomy, ‘Impressions of the Sea’ by Sean O’Hagan

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