End of life care in the community

Healthwatch Leeds undertook research into people’s experience of end of life care and support in community settings to feed this into design of new services.  They undertook a survey and carried out in-depth case studies with 46 people altogether.

There was an almost even split between people that had a good end of life care experience and those that reported a negative experience. There were large variations reported between the end-of-life care and support that people had received both at home and in a care home.

Guidance and rules around Covid-19 and visiting further highlighted variations between care homes. People talked about the negative impact of the Covid-19 pandemic on both service provision and their experience, especially in terms of face-to-face interactions and pressure on services. Many people told us about positive interactions with staff, despite the services being stretched and the pressures that they were working under.

Some families felt there was a need for better support or offers of support, especially in the months after their loved one died. Compassion, respect and communication were key factors, both when people had negative experiences and when respondents reported a positive end of life experience.

The report includes five recommendations about improving the support offered at end of life for both the person who is dying and their loved ones.