Talking to people in care homes about death and dying

Project overview

The Oxfordshire Palliative Care Network wanted to give more people the opportunity to discuss death, dying and end of life. They ran a series of programmes to engage with different groups of people in the community.

One of these programmes, ‘A Conversation about End of Life’, engaged with the residents, relatives, and staff of four residential care homes across Oxfordshire.

The programme ran for 10 months, between May 2023 and March 2024. Activities that took place in the residential care homes included: 

• getting-to-know-you visits with residents
• group discussion sessions with older residents (aged over 80) designed to identify their feelings, needs and preferences about end of life
• small-group work with residents living with dementia, helping them reflect on their lives using artwork and discussion
• an information sharing session with relatives
• informal focus groups with staff (nursing and care teams, maintenance, administration, reception, wellbeing team and management).

Outcomes

The Palliative Care Network aimed to reach a cross-section of care homes where possible, each with a different context and serving different communities. They worked with four care homes across Cherwell, Oxford City, South Oxfordshire and West Oxfordshire.

Most of the care home residents appreciated having opportunities to talk about their lives, even in relation to the end of life. Some shared concerns about leaving people behind, what would happen to their property, and how they would continue to pay care home bills.

Key themes in the discussions with residents included: 

• loneliness 
• missing old pleasures 
• the importance of family 
• wanting a pain-free experience at the end of life
• dignity
• a sense of ‘waiting for the end’.

In the small group discussions, new connections were formed between long-term residents who had not previously known each other very well.

A key outcome of the conversations was a sense of the importance of people being able to make meaning out of the end of their lives.

Key facilitators

During the sessions with staff, the facilitators used different ways to help individuals think about their own end of life needs and preferences. They used ‘thought experiments’ to get people talking, sticky notes to allow staff to share their thoughts anonymously and Marie Curie’s Talk About cards to stimulate discussion.

The Palliative Care Network worked with the Oxfordshire Association of Care Providers to identify care homes who would be willing to take part in the project. They spoke to the Care Home Support Service to better understand how they support caseloads across the county.

The residents and care home staff who engaged in the project were generally very willing to discuss end-of-life, death, dying and bereavement.

Challenges

Care homes can be busy places, and activities for residents often aim to help them have fun. It was important to explain to the care home staff that there is value in allowing time for sadness as well as joy.

Some residents were uncomfortable discussing the ‘private’ matters of end of life in a large group. They would have preferred a smaller group or a one-to-one conversation.

Some staff feel uncomfortable talking to residents about their wishes for the end of life, or to families when a resident has died. This can mean that people’s wishes are not recognised or met. To help overcome this, the Palliative Care Network offered an extra workshop on ‘talking about life and death in care homes’.

In some cases there can be tension between care home staff and palliative care specialists. Care home staff sometimes perceive that they know residents best, and can be worried that specialists will ignore an individual’s specific needs in favour of less personalised palliative care.