Roundtable on End of Life Care and Bereavement
On Feb 7th, NCCH and the All-Party Parliamentary Group for Arts, Health and Wellbeing hosted our fourth roundtable of the Creative Health Review on the theme of End of Life Care and Bereavement. This is an area where we know creativity can have a real impact, helping people to process and express emotion, maintain human connection and to make sense of their experiences, and we heard examples of this in practice from across a range of settings. However, death, dying and bereavement can be difficult subjects to talk about, and societal attitudes can inhibit open discussion. Our speakers highlighted the important role that creativity and the arts can play in facilitating these discussions, providing us with a language though which to express feelings around grief and bereavement, and normalizing public conversations around death.
Artists have an important part to play, because they can offer a different type of language, the language of metaphor – perhaps a non-verbal language, a visual vocabulary, which can express something of this emotional landscape.” – Anna Ledgard
We are very grateful to all our speakers who provided powerful testimonies on the importance of creativity in this context, often from their own personal experiences. These accounts can be viewed in full in the recording of the roundtable, available here.
Creativity in end of life care and bereavement
Dr Lucy Selman, Associate Professor of Palliative and End of Life Care at the University of Bristol, introduced the session, providing a summary of the way that individuals living with serious illness, caregiving or experiencing bereavement can use the arts as a personal resource, for sense-making, coping and as part of self-care, or through a formalised intervention such as art or music therapy, or in bereavement support programmes. Anna Ledgard described her experience of this in practice as an End of Life Doula, guiding people through the dying process. For Anna, the arts are integral as an alternative space in which people can express what is happening to them. In a society that may have become unskilled at dealing with death and dying, the arts and creativity can support people to be more comfortable with the process. Anna cited research that shows that in bereavement too, the use of metaphor and non-verbal language, such as symbols and photographs in reminiscence, can help people to react positively to the emotions that come with remembering someone that has died.
Justine Robinson, Therapies and Wellbeing Services Manager for Pilgrims Hospices in East Kent, described the use of creativity in hospice settings. With an occupational therapy background, Justine instils an understanding of the importance of meaningful occupation and the therapeutic benefits of arts and crafts across the interdisciplinary staff team. Regular ‘time to create sessions’ provide an opportunity for patients and carers to create positive memories together, doing something joyful. The creative activities provide a chance for people to reflect on their personal legacy, and create something to leave loved ones in the form of creative writing, memory boxes, scrapbooking or voice recordings.
“Creativity can help people engage with what can be quite frightening themes in a safe way. Looking at something through the lens of metaphor can help to take some of the fear out of the subject.” – Justine Robinson
One participant in the workshop, Frank, described the benefits for him;
“It gets me out of the house, it gives me something to focus on, and while I’m here and doing something creative, it’s almost a mindful activity because you are just focussed on what you are doing, and all of the other things that sit and lurk at the back of your mind you can just put aside for a couple of hours and just have a really quiet, pleasant time.”
Phillipa Anders’ very personal story reminded us that access to creativity is not a given at of end of life or in bereavement, particularly when death is traumatic or sudden and there is little time or energy available to seek out such support amidst the immediate challenges of navigating the system. Even for Phillipa, active in the arts world, finding creative support during grief and bereavement, in a format she felt relevant for her family, has been difficult. Phillipa believes the arts can and should provide community-based, supportive spaces for people experiencing bereavement, and this should continue beyond the immediate grieving period;
“Bereavement is something you live with for the rest of your life. You need like-minded people around you, where it’s OK to laugh, it’s OK to cry, shout, scream. Where you can ask awkward questions. Where you can rant, and not just for six months but for life. The arts can and must fill this space.” – Phillipa Anders
Lucy Turner and Laura Gallagher, who spoke to us about the Still Parents programme at the Whitworth Gallery in Manchester, recognised the challenges raised by Phillipa in the context of finding support that felt ‘for them’ after baby loss – an issue that although very common is rarely spoken of. For Lucy, the links with art seemed clear;
“Working in an art gallery, I just felt like it was a huge opportunity to use art as a way to productively work through experiences and make sense of these kinds of experiences.” – Lucy Turner
The Still Parents programme is a series of workshops, established in partnership with Sands, the stillbirth and neonatal death charity, using art and creativity to work through experiences of baby loss. In the workshops there is a focus on making and doing rather than taking, and conversations arise naturally during the art-making. Laura, who took part in the programme, echoed the importance of human connection, companionship, control and grounding offered through the group, without the need to talk explicitly about her loss.
“There comes a point where you’ve talked about it so much that you need something else. So having that physical thing to hold onto, to make something once a month, it made a huge difference to me.” - Laura Gallagher
Although the main aim of the group was to ‘create things and support each other in terms of healing’ the programme also led to an exhibition. The exhibition had two aims – to create a safe space for bereaved parents to come and honour their babies, and also to break the silence and change the narrative around baby loss. Over its 14 month run the exhibition received 200,000 visitors, many of whom were able to add their own baby’s name to the Memory Wall or contribute their own stories. Other outcomes include training for student midwives, and the provision of space for bereavement counselling within the gallery, meaning people do not need to return to the site of their loss, and can receive support in a comfortable, non-medical setting.
Opening up conversations about death, dying and grief
The Still Parents exhibition is one example of how the arts can help to open up discussions around death, dying and grief. This is something that Dr Lucy Selman has also researched and implemented through the establishment of the Good Grief Festival. Lucy notes that in addition to benefits of creative health for individuals, the arts can form a key part of a public health approach to death and dying, working with communities to increase confidence and empower people to express and share personal experiences. The free, online festival, founded in 2020, allows people to learn, talk and share experiences about grief with a focus on shifting social attitudes, improving grief literacy and developing compassionate communities. Previous festival content can be viewed here.
“A key ingredient of how we work has been integrating arts, culture and creativity as this provides a way into challenging topics like death and dying, and opens up new perspectives. It provides insights into the lived experience of grief – both its individual nature and cultural specificity as well as its universality.”- Dr Lucy Selman
This sort of approach can also help to reduce inequities in access to end of life care and bereavement support, which are experienced particularly by people living in deprived areas and minoritized communities. This is a priority for Hospice UK. Senior Campaign and Content Manager, Imogen Thomas introduced the Dying Matters Campaign, established to help place death and bereavement onto the national agenda, shifting the narrative away from a medicalised process to a societal conversation which takes place in a range of different spaces. They have found that the arts can provide a safe, alternative approach to discussing death and dying, and through the Dying Matters Community Grants Programme have funded community-based arts projects which address this in communities which may be overlooked or struggle to access end of life and bereavement support.
Myra Appannah and Simon Wilkinson from BRiGHTBLACK have used gaming technology to develop an interactive and immersive experience ‘1000 Conversations About Death’, which allows people to enter a risk free world where they can explore concepts around mortality and death, free from the usual societal expectations. The installation was originally hosted within a church in a deprived area of Brighton, but will tour globally thereby collecting conversations from diverse cultures and a multitude of perspectives. Conversations from the virtual encounter are collected and transformed into an electronic performance piece and subsequently a podcast, further extending its reach. Myra explains that the use of virtual spaces accesses a global community, connected in an online world, and is progressive, moving away from traditional hierarchies and representing non-establishment voices, with different ideas and rituals related to death and dying.
Single Homeless Project (SHP), a charity supporting people experiencing or at risk of homelessness in London, offered an opportunity through their in-house arts programme to explore feelings around death and dying through the creation of ceramic plaques. Plaques could represent participants’ own lives, or the lives of people lost. Meg O’Malley and Ruth Milne highlighted the disproportionately high mortality rates in this population, meaning many of their participants have experienced bereavement but may not have accessed support. Having anticipated some reluctance, SHP were surprised by the willingness of participants to join the programme, and found that through the process of art-making, within a safe space, discussions arose naturally.
“Bringing loved ones metaphorically into the room by creating art in their memory normalises discussion about that person, and gives others permission to enter into conversations about them. We also noticed that natural discussions around experiences of death came up whilst there was a practical creative task going on in the same room and therefore seemed to make this less intimidating.” - Meg O’Malley
Whilst there is clear potential for the arts to be a catalyst for normalising discussion and changing societal attitudes towards death and dying, providing a language for different communities to express their feelings around the topic, our panel discussion also reminded us that we must ‘meet people where they are’, and that the conversation will remain sensitive, painful and challenging. However, creative health offers a way to move in the right direction.
Embedding Creative Health
We asked our final speaker Tim Straughan from NHS England’s Personalised Care Team to consider how creative health could be embedded into heath and social care systems. Tim highlighted three priority areas to inform the panel discussion;
- Identifying the people that most need help, taking into account increasing inequalities
- Developing a personalised approach - finding out what matters most to people
- Capturing the opportunities available and systematically connecting people to support
Our panellists felt that a joined-up approach and improved signposting was vital to ensure people were able to access the resources that already exist, particularly considering that people may find it hard to seek out support during what can be an emotional and traumatic time. There may be further barriers for those who cannot access the internet, who do not have English as a first language or from communities that may need additional support to access services, so a proactive approach to connecting people with creative opportunities is necessary. This might include taking creative services into institutions such as the NHS, and developing a shared understanding between artists and healthcare professionals. From a hospice perspective it was noted that whilst innovative creative programmes are in place, as charities, funding can be a limitation. Further integration with the healthcare system could help to address this. Integrated Care Systems also offer the potential for more collaborative ways of working, allowing systems to connect to programmes in the community, such as the ones we heard about in the session.
With the aim of the Creative Health Review to make recommendations to further embed Creative Health across systems, the roundtable provided some excellent examples of the benefits of creativity in end of life care, and fruitful discussion around how we can make the most of its potential. The important contributions from this session will inform our commissioners, and the final set of recommendations.
The roundtable is available to watch back here and we welcome your own perspectives and experiences through our open call for contributions – find details of how to submit here.
Roundtable Agenda & Biographies: ncch.org.uk/uploads/End-of-Life-Care-and-Bereavement-Roundtable-Agenda.pdf
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