Stories from the End of Life

We are a group of people from seven hospices, four universities and various community and health organisations across SW England that want to improve people’s experiences at end of life. We wanted to find out the views and feelings of people living in rural and coastal areas, and those living on a low-income, about what is needed to enable living well, dying well, and grieving well. Understanding what is difficult for people dealing with end-of-life will help to develop the right kinds of support, and future research, to better meet people’s needs.

 

Who are we and what are we doing?

We are a group of people from seven hospices, four universities and various community and health organisations across SW England that want to improve people’s experiences at end of life. We wanted to find out the views and feelings of people living in rural and coastal areas, and those living on a low-income, about what is needed to enable living well, dying well, and grieving well. Understanding what is difficult for people dealing with end-of-life will help to develop the right kinds of support, and future research, to better meet people’s needs.

Our aims

We spoke to people from different rural, coastal and low-income communities in the South West to find out:

 

  • What issues are important to people when they think about death and dying?
  • Are there issues particularly related to being in rural, coastal and low-income communities that affect people’s experiences when they have a life-limiting illness, or that affect their families or carers?
  • What information do people find useful and what kinds of support are people seeking?
  • How accessible, useful and relevant do people find the resources and services available locally?

How did we find out?

Over nine months. from January to September 2022, we gathered people’s views and experiences, using four different methods:

 

1. Departure Lounge

We took ‘The Departure Lounge’, a pop-up installation about end of life, into nine different settings, including community cafes, community groups, a health centre, charity shops. We had conversations and shared information with people who were interested in talking about their experiences and thoughts.

2. Community Conversations

Torbay Communities and Filament worked together to create a ‘Community Conversation suitcase’ – a tool containing different creative activities and prompts to help facilitate conversations. The suitcases were used by Community Connectors to have conversations with individuals in their own homes. People took part who had experience of living with, or caring for someone living with, a life-limiting illness.

If you work within the community, or a healthcare service, and would like to trial using the Community Conversations suitcases with community members, please get in touch. We would be delighted to loan the resource in return for some brief feedback.

 

Contact Amanda Lynn, Community Builder Lead Coordinator, Torbay Communities: [email protected].

3. Real stories from the end of life

Storyteller Sara Hurley worked with three participants to explore their experiences in more depth and co-create a story for each person. This moving collection illustrates a range of experiences.These personal stories are verbatim adaptations of longer conversations with people who cared for loved ones at the end of their lives. Each has its own poem inspired by a special song. They have been anonymised and are voiced by actors. The contributors have been closely involved in the process and hope that their story will go on to help others, and we would like to thank them for being willing to share their experiences and generously give their time.

The In-Between Guy (The One Who Can Deal With All Of This)

The story of a son who cared for his father at the end of his life. A palliative care nurse himself, he reflects on the very different and personal impact of caring for his father, and on the emotional difficulties faced by his wider family. His story describes the challenges of accessing the support his father needed, and the realities of caring for his father at home.

Secretary of the Illness

The story of a wife who cared for her husband at the end of his life. She reflects on relationships with different health professionals – on those who made the time to listen and get to know her husband, and those who did not. She describes the help and information she would have wanted, and the support she needed following his death.

Someone Like You

The story of a daughter who cared for her parents at the end of their lives. She describes the many barriers she faced trying to care for her parents, both in hospital and at home. She reflects on the personal and emotional cost, on her changing relationship with her parents and her wider family due to her caring role.

We are now considering how these stories could be used, for example for training health and social care professionals, or to advocate for better support services. If you have any thoughts, ideas or suggestions for how these stories could be used, or would like to use them with your work / organisation, please let us know using this link: audio stories feedback form.

4. Focus Groups

A researcher from Exeter University (Lorraine Hansford) ran four focus groups within community settings, to discuss in more depth the issues and themes that had been raised.

What did we learn?

We gathered together all of the information that people told us about their experiences of living, dying and grieving in the south west and the findings are available in the report available here: Community Engagement Report Nov 2022

People expressed their views about the difficulty of accessing healthcare, support and information. They explained what support was important to them, and described the role that communities can play in supporting people at end of life.

What next?

The findings are helping us to decide on areas of research that are important for the future, to address the needs identified by communities. Individual organisations within the network are also using the findings from the research to help shape their services. The South West Palliative Care Research Network was funded to run for 15 months by the National Institute for Health Research. Member organisations (listed below) are continuing to meet to discuss opportunities for future joint research opportunities.

Get in touch

For more information about the work of the network please contact Professor Katrina Wyatt, University of Exeter, [email protected].

SW Palliative Care Research network: Member organisations

The organisations involved in the partnership are:

 

  • Cornwall Hospice Care
  • Devon & Cornwall Police
  • Health Watch Devon, Plymouth & Torbay
  • Hospiscare
  • King’s College London
  • Marie Curie
  • North Devon Hospice
  • NIHR Clinical Research Network South West Peninsula
  • NIHR Research Design Service South West
  • Plymouth Octopus Project
  • Rowcroft Hospice
  • SWP Palliative Care Research Partnership Patient and Public Involvement group
  • St Luke’s Hospice
  • St Margaret’s Hospice
  • Torbay Communities
  • University College London / St Christopher’s Hospice
  • University of Exeter
  • University of Plymouth

Thank you

Thank you to all of the partner organisations and the members of the Patient and Public Involvement Group who were key contributors to this work. We also thank all of the Community Conversation, Focus Group and Storytelling participants for being willing to share their experiences and views.

 

This project was funded by the National Institute for Health and Care Research Palliative and End-of-life Care Research Partnerships programme. See the NIHR Journals Library website for further project information.