Participants
We issued an open call for artists to work with a hospital. Through our Hospice Friendly Hospitals and Care at End of Life Network, we also connected with hospices and hospitals to identify healthcare settings that would value an artist in a service role.
Two artists with the requisite skills, interest, experience, and qualifications, were commissioned. Visual artist Caroline Schofield was embedded at St Luke’s General Hospital Kilkenny, and BAFTA-winning writer and bardic poet Kevin Toolis at University Hospital Limerick.
Caroline Schofield was supported by the End of Life Care Coordinator and Arts in Healthcare Programme Manager at St Luke’s Hospital. Kevin Toolis was supported by the End of Life Care Co-ordinator at University Hospital Limerick.
Aims
Operating somewhere between an artist-in-residence and an artist “on call” in an acute hospital, we wanted to find out what would happen if people were given the opportunity to explore creativity to the end of life. Through positive engagement with patients, families, and staff, we hoped to provide a unique outlet for self-expression and to encourage compassion in an acute system amongst all who work in, or use it.
Methods
The starting point for this project was drawing on the experience of artists working in hospitals and hospices who are regularly approached by people at the end of life to document something. Alongside this are nurses’ reports of people finding unexpected reserves to complete a painting, or a craft or creative project before they died. Other artists testing work in this area have described their work as being about waiting for someone to call them in, and about their role being supporting people to create love letters to the earth. Finally, we drew some inspiration from programmes like Stories for Life and The Hospice Biographers memorialisation project.
Following introduction sessions with Irish Hospice Foundation, both artists began their residencies with introductory briefing sessions for wider staff and hospital groups before settling into a regular pattern of being on site for a few days every week. In Limerick, Kevin led a reading and writing group for cancer patients and spoke at Bereavement Network events. Caroline was connected to interested patients in St Luke’s Hospital and to the Home Care Team. As well as regularly meeting online as the project developed, we also built a support system around these artists and participating hospitals. This included further training and allocating a counsellor for each artist.
The project was continuously supported throughout by Irish Hospice Foundation’s Arts and Cultural Engagement staff as well as bereavement and healthcare teams. From the outset, everyone involved recognised issues existed that could only be resolved in a “learning by doing” process. Examples include ethical issues of permission and patient rights, of sensitivities to the healthcare setting and family. Alongside these are the rights of patients and people to self-expression and creativity. There were also questions about self-determination relating to medication and health and ability to communicate. There was the reality that a schedule for dying isn’t predictable and dying is messy and unpredictable.
Artistic Outputs
To date Kevin has written three poems inspired by the experience and Caroline has produced many drawings, both in partnership with patients and on her own.
We also commissioned three animators – Ivanna Dacheva, Michael Lomon and Emma Fisher – to respond to stories from Caroline and Kevin about their experiences. Each animator set out, in their own unique style, to illustrate the complex experience of working creatively with people at end of life. These are available on the Irish Hospice Foundation website.
There is a book reflecting on the process, available as a digital book or hard copy. There is also a video of reflections from healthcare staff.
Evaluation Methodology
Almost all Irish Hospice Foundation arts projects to date have been established within Peer-to-Peer research frameworks. We recognised from the beginning there was little practical precedent for this work, even less during the pandemic when it began, so the opportunity for apprenticeship was small. We would need to learn from each other.
Therefore, at the start of each project Irish Hospice Foundation’s Education Department provide a grounding in current understanding of grief and bereavement theory, and in Ireland’s healthcare systems and supports, including NGOs. We share knowledge of related practice. All artists are contracted to maintain a diary for their own benefit. At the end of projects, this diary is used to write a reflection for internal use. Project leads also write a report, along with a reflection.
Aligned to this are evaluation processes for staff, for those who engage, and those who support a project. We also produce short documentaries on most projects, including this video about the residency at St Luke’s General Hospital Kilkenny. Then there is the art made.
The Artists in Residence in Service to People at End of Life project is a prototype. Our concerns were the support and wellbeing of everyone involved. Irish Hospice Foundation staff provided the grounding education, and we (the “cultural engagement” team) established the Peer-to-Peer process for artists and the healthcare teams, individually within each location, and between the two sites. Project leads checked in with the artists, the care workers, and all together.
On each site the artists were embedded within the healthcare teams. In turn, the healthcare teams were connected directly with patients and families, and were their point of instant feedback. Having an Irish Hospice Foundation supported End of Life Care Coordinator made all this possible. In St Luke’s Hospital Kilkenny an Arts Office supplied an additional beneficial layer. We provided a counsellor to each artist as part of their contractual agreement, and while anything discussed was confidential, they worked as a check and balance to our duty of care. Because of this when projects were not working, we were made aware, and could adapt.
At Irish Hospice Foundation we have been able to use external researchers and informed academics to assist in developing this. We are seeking ways to lead multi-year projects with wraparound evaluations and multiple approaches. However, it’s always going to be a work in progress. The notion of an Ethically Approved Randomised Control Trials approach to creative intervention for the dying kind of misses the point.
Knowledge making about dying is not a process of engineering. Nor is it simple pharmacological healthcare. It is an art.
Evaluation Outcomes
The publication ‘Art by Their Side’ reflects on this programme of work. The aim of this publication is to share learning and encourage further residencies. Specifics were removed with consideration for the individuals involved and all who contributed did so with permission. It’s structured to present multiple voices and multiple perspectives from concentric circles of care – the professional care staff, the artist’s team, and various support staff. At the centre of these circles were those who were dying.
It also features creative work, along with reflection and advice from hospital staff, artists, and support teams who reported both they and patients involved benefitted hugely from the project. This included better communication and a more personalised stay for patients. As Consultant Geriatrician at St Luke’s, Dr Rory McGovern, said:
“For us, it’s all about the process and trying to make patients better. But for those who come in, you can feel they’re completely at sea. I’ve seen Caroline work with patients with multiple medical and psychological issues. I’ve seen them engage with her and then suddenly smiling and finding themselves as people again.”
Dr McGovern’s sentiments were echoed repeatedly in feedback from others, such as Margaret Ryan, St Luke’s End of Life Care Coordinator:
“It showed us what’s important. Dame Cecily Saunders, the founder of the modern hospice movement, encapsulated very well that you can live well right to the end. It doesn’t have to be big gestures – small little things can make a major ripple effect.”
However, as ‘Art by Their Side’ and our documentary video illustrate, this is emotional labour of high order requiring compassion, courage, creativity, and consistency in equal measures from all involved. Our enduring lesson is that many voices and many disciplines need to work together in service to people at the end of life to ensure a good death.
Documentation and Dissemination
The core ambition of Irish Hospice Foundation’s Arts and Cultural Engagement is to make art “ordinary in its quantum” — readily available to everyone who might benefit from creativity in services to people at the end of life. Which is why we have made ‘Art by Their Side’ available to read and share online, along with the documentary and animation videos.
We are also distributing copies of the book through our Hospice Friendly Hospitals, Caru, and Care at End-of-Life networks, among others. Lead artists on this project spoke at our Arts and Creative Engagement Roundtable Gathering in June 2023, and at our Forum on End of Life in February 2024.
For more see: www.hospicefoundation.ie/arts
Partners
The Creative Ireland Programme
St Luke’s General Hospital Kilkenny
University Hospital Limerick
