Changing cultures where people are living and dying

A Pilot Public Engagement Programme

Alison Waller – Oxfordshire Palliative Care Network – April 2024

People in the UK are living longer with increasingly complex care needs (physical, mental, social, emotional, cultural, spiritual). While the population is ageing overall, matters of end of life – of dying, death, and bereavement – affect all of us, individually, and as part of family and community life. It is important that everyone can receive personalised, compassionate, and effective end-of-life care when they need it. But growing social and health inequalities mean that there are often hidden barriers to accessing such care. For palliative and end-of-life professionals to deliver excellent and equitable services, cultural changes are needed.

In 2022, the Oxfordshire Palliative Care Network (OPCN) received funds from the Oxfordshire Clinical Commissioning Group to devise a pilot public engagement project as part of its commitment to understand the needs and desires of the population it serves. The ‘Changing Cultures’ programme was designed to work with communities of people in Oxfordshire who previously may not have been reached by engagement activity. It ran in 2023-24 and had the following aims:

To open up conversations about dying, death, and bereavement within different communities in Oxfordshire.
To build mutual understanding between the county’s palliative and end-of-life care services and the public, particularly under-served or unheard communities, or those experiencing health inequalities.
To identify ongoing and sustainable engagement strategies and good practice for members of the OPCN and other professionals working in palliative and end-of-life care.

Three ‘Changing Cultures’ pilot projects were devised, using creative methods to engage people in conversations. The programme took a case-study approach, recognising the value of in-depth interactions and rich insights into diverse and complex responses to questions about dying, death, and bereavement. Where possible, engagement activities were co-designed with members and representatives of identified groups and findings were shared with these groups, along with follow-up training or resources.

Pilot Projects

The pilot projects were chosen to represent groups of different ages, abilities, and locations:

‘How Does it End?’ – young people.
‘A Good Death’ – people with learning disabilities and autism.
‘A Conversation about End of Life’ – people living and working in residential care.

Key Learnings

It is important and valuable to have conversations about end of life with people who are not actively dying or experiencing bereavement: death affects everyone.
Although there can be some resistance to, or discomfort in, talking about dying, death, and bereavement, organisations and communities welcome opportunities for facilitated activities on end-of-life topics and are eager for continues conversations and further resources.
Young people, people with learning disabilities, or those living in care, as well as professionals working with them, can gain confidence to talk about dying, death, and bereavement through sustained engagement work and can become ‘champions’ for continuing to develop awareness, understanding, good practice, and accessible services.
There are some gaps in training and support for teachers, support staff, and care home staff. Further guidance might be provided, particularly in the ‘softer’ skills required to help individuals facing end of life or experiencing bereavement, and in a greater understanding of personalised approaches to clinical, care, therapeutic, and wellbeing services.
Organisations and individuals can feel disconnected from a wider support network and do not always know who to approach for advice or services related to end-of-life matters.
Establishing and growing relationships with wider communities, particularly within demographics less likely to have previously engaged with healthcare initiatives and services, requires time, persistence, and cultural sensitivity. Meaningful work that enables people from all backgrounds and abilities to engage with end-of-life matters needs to be iterative and designed for the long term. It required dedicated personnel to design and direct strategy and undertake project work, and should be linked where possible to other regional and national initiatives.

About the Oxfordshire Palliative Care Network

The Oxfordshire Palliative Care Network is a voluntary, independent network of providers who come together to support the shared goal of continual excellence in palliative and end-of-life care for the population of Oxfordshire. For more information contact the Network Manager, David Savage: [email protected]

Network members are:

Helen & Douglas House.
Kate’s Home Nursing.
Lawrence Home Nursing Team.
Marie Curie.
Oxford University Hospitals NHS Foundation Trust (OUHT), including Sobell House & Katharine House.
Sue Ryder, South Oxfordshire Hub.

How Does It End?

A project run with young people.

We worked with a comics artist and a local community college to create a series of after-school workshops based on the theme of ‘endings.’ These were designed to help open up discussion about dying, death, and bereavement through drawing and storytelling. How Does it End? ran in June and July 2023 and involved three young participants aged 16-18.

We ran four afternoon workshops on different topics:

Endings.
Living well.
Death rites and rituals.
Bereavement, grief, and memories.

We explored each topic collaboratively, using creative and art-based exercises, before moving conversation to personal experiences.

In the first workshop we drew the story of Cinderella and discussed what would happen after the ‘happy ending’ if the prince became terminally ill.

In the second workshop, we learnt about figure drawing and asked what kinds of lives our favourite fictional characters have lived. We then thought about our own legacies or those of people close to us.

In the third workshop we built on the cohort’s interest in the character of Batman and used him as a starting point for thinking about planning for death. Participants then devised their own funerals and other rites.

The last workshop introduced participants to models of grief and information about palliative and end-of-life care, inviting them to think about support that people need at different ages.

Partners

Oxfordshire Youth advised on the project and suggested EMBS Community College in East Oxford as a partner. With EMBS we agreed on an approach that would involve working alongside a creative practitioner. With the help of Oxford’s Story Museum, we contracted comics artist Neill Cameron, who co-designed and helped to run the programme. EMBS staff were involved in recruiting and facilitating the workshops. All partners were offered a package of bereavement training designed for secondary schools provided by SeeSaw, a bereavement charity supporting young people in Oxfordshire.

Takeaways:

Young people recognise the value of exploring issues related to dying, death, and bereavement at an early age and appreciated having a safe space for discussion with their peers. Conversations do not always happen easily at home.
Thinking about death gave participants the opportunity to reflect on life and the meaning it holds for them.
Awareness of services and vocabulary related to end-of-life care was low amongst these participants, although those who have experienced loss are more aware. Hospices and the term ‘hospice care’ were unfamiliar.
Main sources of information about dying, death, and bereavement come from church, school, movies, and Google.
Cultural and familial influences play a large part in shaping understandings of death and preferences for end of life. The participants recognised where some obsolete customs reflected inequalities of class or gender.
These young people think deeply about practical and financial concerns related to end of life, particularly funeral costs, debt, and inheritance.
Participants found it useful to explore models of grief and could think critically about their limitations and benefits.
Some participants recognised that barriers to end-of-life care might include practical difficulties (for example, in returning to be buried in a community where they grew up). Migrant families may face challenges in maintaining traditions.
The arts-based approach was popular and is useful as a way of engaging young people and allowing discussion of complex issues to move from a common point of reference (such as wondering what would happen if Batman died) to more personal experiences (what happened when someone I loved got ill? What will happen when I die?).

Young participants reported back:

It has made me less fearful of death.
It has made me more comfortable about the subject.
It made it easier to open up and talk about death.

A Good Death: A project run with people with learning disabilities and autism.

We worked with a local charity supporting people with learning disabilities and autism to co-design a series of workshops combining creative activities with discussion on themes around end of life.

A Good Death ran in July and August 2023 and involved four people with mild and moderate learning disabilities and their support workers.

We ran four morning workshops on different themes:

Beliefs about death.
Care when dying.
Advance Care Planning.
Bereavement.

We used a playful storytelling method involving a rag doll called ‘Jack’ to explore these topics, as well as drawing, mind-mapping, and poetry.

During the workshops we imagined Jack (the rag doll) in various stages of illness, dying and death, as well as thinking about his bereaved friends and family. Projecting end-of-life experiences onto a toy was an effective way of safely exploring these topics together before moving onto personal experiences.

Participants collated information about the challenges Jack might face if he was very ill and what he might need in the final weeks, days, and hours of his life.

We listed and drew what is important to us now. This helped us think about how end-of-life
support can be shaped by personal comforts (such as families, pets, and hobbies) and a sense of life purpose (such as occupations and meaningful activities).

In the final workshop we discussed the need for people with learning disabilities to be involved in decision-making. We also made memory boards to remember people who have died.

Partners

We worked with Style Acre to set up an initial co-production meeting with people with learning disabilities and autism, their support workers, and key staff from the charity. This meeting helped us identify the approach and content of the subsequent workshops. We consulted with advocacy charity, My Life My Choice, and the Learning Disability Liaison Nurse at Oxford University Hospital, to ensure good practice in working collaboratively and accessibly. We fed back to the Style Acre community and presented an easy-read report.

Takeaways

People with learning disabilities can be experts in illness, healthcare, and bereavement through lived experience. They understand, or can be helped to understand, symptoms, care approaches, and practical decisions around end of life. They can also share some of their understanding with others.
People with learning disabilities want to have the choice to be informed and involved when someone close to them is ill, dying, or has died. They are also open to being a part of conversations about dying, death, and bereavement more generally.
When people with learning disabilities are left out of conversations, they can feel anxious, excluded, and upset.
There are ways to help people with learning disabilities feel involved in rituals around death and grief: for example, making funerals accessible, or facilitating rituals that can be performed personally or as part of a community.
People with learning disabilities have a diverse range of preferences, backgrounds, needs, and experiences. They all need to be heard, validated, and not marginalised, in order to receive appropriate support around end-of-life issues.
When making advance care plans, it is important to take into consideration how people with learning disabilities feel about the sense of purpose they have in their lives.
Some people with learning disabilities may have traumatic past experiences of death in institutional and care contexts that need to be understood.
It can take more time than with other people for people with learning disabilities to process complex or emotional information about someone dying and they may require support at a slower pace: according to staff, understanding and response can take at least 6-9 months.
Formal language used in healthcare settings and systems can be a barrier for users, including for caring staff who might prefer to express their strong bonds with people they support in more familiar and personal terms.
The use of the rag doll, Jack, and other creative activities provided a helpful way into discussion of sensitive topics.

A Good Death helped people with learning disabilities ‘learn’ and ‘understand… a bit more.’
They liked ‘remembering’ and ‘mak[ing] friends.’

A Conversation about End of Life: a project run with people living and working in care homes.

We worked with four residential care homes across Oxfordshire to run a range of activities exploring dying, death, and end of life with residents, relatives, and staff.

A Conversation about End of Life ran from May 2023 to March 2024. Activities included:

Getting-to-know-you visits with residents.
Group discussion sessions with residents.
Small-group memory work with residents.
Discussion sessions with relatives.
Forums, group discussion sessions, and 1-2-1 conversations with staff.

Group discussion sessions with residents – These were run with older residents (age 80+) and were designed to explore feelings and identify needs and preferences about end of life. Themes included: loneliness, the importance of family, pain-free experience, dignity, a sense of ‘waiting for the end’, missing old pleasures.

Where discussion took place in larger groups, some residents were uncomfortable discussing the ‘private’ matters of end of life or did not find the conversation useful.
Some residents expressed concerns about leaving people behind, about property they might still own, and about managing to pay care-home bills.
There can be confusion over whether information (for example advance care planning data) is written down, especially where residents are living with dementia or have other cognitive limitations: advance care planning therefore needs to be an ongoing and repeated activity that uses common terms and language that is easy to understand.

Small group memory work with residents – We worked with a small group of residents living with dementia to help them reflect on their lives and enable meaningful conversation. Phrases and pictures that emerged from discussion were used to create poems and story fragments.

Residents mostly appreciated opportunities to talk about their lives in depth and in meaningful ways, even in relation to end of life.
Small-group discussions about end of life encouraged new connections between long-term residents who had not previously known each other very well.

Relatives – We had one conversation/information-sharing session with relatives.

The advice and knowledge of families can be heard and used to create good end-of-life activities or environments for residents.

Nursing and Care staff/non-clinical staff – We ran informal focus groups with Nursing and Care staff and with staff from Maintenance, Wellbeing, Administration, Reception, and Management. We also offered a final workshop on ‘Talking about Life and Death in Care Homes.’

Care home staff often expressed a preference to not spend their own end of life in a care home.
Staff responses to death sometimes mean that families’ needs may not be met. Some staff feel uncomfortable talking to families when a resident has died. Others find it easy to remain detached during difficult conversations.
Providing time and space for reflection in the shape of a formal ‘debrief’ when a care-home resident dies is useful for all staff who were involved in their care and support.
Relationships between care home staff and specialists in palliative and end-of-life care can be delicate: in some cases there may be tension when care home staff perceive that specialists ignore residents’ specific needs in favour of less personalised palliative care.
Non-clinical staff, such as Wellbeing or Activities Coordinators, could benefit from training in holistic aspects of PEoLC and be involved in debriefing sessions when a resident dies.

We conducted thought experiments to help individuals think about their own end of life needs and preferences, and we used sticky notes to allow staff to reflect on their experiences anonymously in the sessions. We also made use of Marie Curie’s ‘Talk About’ cards to stimulate discussion.

Partners

We worked with the Oxfordshire Association of Care Providers to identify care homes who would be willing to take part in the project. We aimed to reach a cross-section of care homes where possible, working within different contexts and serving different parts of the population. We worked with four care homes across Cherwell, Oxford City, South Oxfordshire and West Oxfordshire. We also talked to the Care Home Support Service (CHSS) about how they support caseloads across the county.

Takeaways

Residents and care home staff who engaged in the project were generally very willing to discuss topics of end-of-life, dying, death, and bereavement. A key outcome of the conversations was a sense of the importance of individual meaning-making at end of life.
Care homes can be busy spaces, and social activities are often designed primarily with fun in mind. There might be room for quieter activities, including simple facilitated conversations that allow time for sadness as well as joy. Listening and repeating elements back can help residents reflect on their lives and any significant losses, and express their end of life needs.
More chances to share experiences and good practice throughout individual care homes and via wider care provider networks would be welcomed.

Changing Cultures where people are living and dying: reflections from the programme’s Public Engagement Manager

Significance

Dying, death, and bereavement will affect all of us at some point in our lives. It is important that we understand what these experiences mean for us, our families, and our communities, and that we can communicate our needs and preferences to healthcare professionals when we require help.

Starting Conversations

Changing Cultures was a way of helping individuals and organisations start to have crucial conversations about end-of-life matters. Unlike conventional patient involvement, this public engagement project programme enabled us to reach out to people who may or may not already be aware of palliative and end-of-life services, those who may need to access these in the future, and those who want to find alternative ways to support themselves and their communities when facing dying, death, and bereavement.

Hearing from Lesser-Heard Groups

The Changing Cultures projects also aimed to hear about the needs, wants, opinions and experiences of people from groups who are usually not included in discussions about end of life, as well as the staff or others who support them. It was important to be inclusive and collaborative, co-designing workshops and events with participants where possible. It was also crucial to be flexible and build relationships with individuals within organisations over time, so that we could build trust and possible to explore sensitive or emotive topics together.

Creative and Storytelling Methods

Using arts-based and narrative methods helped us to tell stories about individual experiences and enabled ‘tender conversations’. We explored fairy-tale endings, drew images of Batman’s funeral, thought about the palliative needs of a dying rag doll, and created poems as part of memory and legacy work. This creative approach helped provide the important human detail that lies behind data.

Meaningful Change

Changing Cultures was above all else meaningful. It engaged with a relatively small number of participants, but it made a big difference to their feelings about, and understanding of, dying, death, and bereavement. It also had an impact on creative practitioners who were involved in delivering activities. The programme provided groundwork for organisations and individuals to think more deeply about end-of-life issues, as well as beginning the work of putting people in touch with each other and with the services that can offer help and guidance in the future.

Practicalities and Future Work

This project was funded with a modest budget and costs were minimal, mostly covering salary for a Public Engagement Manager and fees for creative practitioners to be involved. Essential support for project management was provided by the Oxfordshire Palliative Care Network. More work can be done to help change cultures while also providing insights to palliative and end-of-life specialists: but sustained resources would be required to start new conversations with other groups, particularly marginalised ones, such as people living in areas of deprivation or under-served ethnic communities.

Alison Waller, April 2024
Public Engagement Manager for Oxfordshire Palliative Care Network
Pilot programme: February 2023 – April 2024