Since the inception of our Arts and Creative Engagement programmes in 2021, we have mainly focused on the bereaved and grieving. We have done this by exploring new ways to show why creativity is invaluable as a sense maker for people of all ages facing grief, loss and the uncertainties of death. These include leading over 50 collaborative projects exploring:
- Role of artists in bereavement and death
- Cultural understanding of grief and loss in a diverse society
- Importance of local community for bereavement support
- Impact on care staff where personal and professional grief combine
- Relationship between grief, mental illness, health and wellbeing
As a result, we are developing a deeper understanding of what creativity offers people at end of life. In parallel, we are developing a heightened awareness of how best to support artists, what best practice is, and how to work in care systems including the HSE, acute hospitals, and residential care settings. All this is being done in support of our raison d’être: ‘Every death matters and we only have one chance to get it right’.
In 2022 we secured funding from Creative Ireland to carefully explore how creativity can work for the dying through developing this new End of Life programme. We wanted to work with two artists, their local hospital and / or hospice, to offer an end of life service for 12 months. In essence the plan was for the artists to work somewhere between an artist in residence and an artist’s “on call” programme.
The starting point 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.
We issued an open call for artists to work with a hospital that don’t already have a substantial arts and health programme. Through our Hospice Friendly Hospitals and Care at End of Life Network, we also connected with hospice and hospitals to identify health care settings who would value an artist in a service role in their venue. Two artists with the requisite skills, experience, and interest were appointed. BAFTA-winning writer and bardic poet Kevin Toolis at University Hospital Limerick, and visual artist Caroline Schofield at St Luke’s General Hospital Carlow / Kilkenny. More information on both artists is available below. We then built a support system around these artists and participating health care settings. This included further training and allocating a counsellor for each project, which started in early 2023.
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 health care setting and family. Alongside these are the rights of patients and people to self-expression and creativity. There are questions about self-determination relating to medication and health and ability to communicate. There is the reality that a schedule for dying isn’t predictable, that people are nearly as likely to die in home or hospital, and that dying is messy and unpredictable. Then there is the question of what a momento-mori might look, feel or sound like.
We are currently exploring a research framework to assess the impact on artist, staff, and relatives of persons involved at end of life. We are also working with videographer and graphic capture artist and writer to engage with and document this process.
Kevin Toolis is a BAFTA-winning writer and bardic poet who is the author of three acclaimed works of creative non-fiction. He is the author of the creative memoir ‘My Father’s Wake’, a seminal work on Irish wakes, and is an internationally recognised TEDMED speaker and Death Thought Leader. His second death book ‘Nine Rules to Conquer Death’, was published by One World in 2020. ‘NineRules’ is a life manual to help us all navigate our way through our mortality in a Covid-19 world sprawling into chaos in pandemic. He is also the writer of a highly praised chronicle of Ireland’s Troubles ‘Rebel Hearts’ published by MacMillan. Kevin was awarded a Seed Grant to create Gone, a bardic poem on the losses of the Covid-19 pandemic. In addition, he is currently one of our Artists in Residence working “in service to people at end of life”. For more visit wondersofthewake.com/kevin-toolis
Caroline Schofield is a Visual Artist who studied Textiles in the National College of Art and Design, Dublin. She also holds a Masters in Art and Process from Crawford College of Art and Design, Cork. Over the past eight years she has worked with Waterford Healing Arts (now Reálta) on numerous projects. This includes developing Open Gallery, an ongoing arts project showing University Hospital Waterford’s Art Collection to patients and nursing homes – a pilot art programme with palliative care patients. Caroline’s work is found in public and private collections and has been exhibited nationally and internationally. She is currently one of our Artists in Residence working “in service to people at end of life”. For more, visit Caroline Schofield’s web site.