End of life care in the community

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Summary of report content

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.

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General details

Report title 
End of life care in the community
Local Healthwatch 
Healthwatch Leeds
Date of publication 
Wednesday, 2 June, 2021
Date evidence capture began 
Thursday, 1 October, 2020
Date evidence capture finished 
Thursday, 31 December, 2020
Key themes 
Communication between staff and patients
Holistic support
Quality of care
Quality of staffing
Staff attitudes

Methodology and approach

Was the work undertaken at the request of another organisation? 
No
Primary research method used 
Survey
User stories
If an Enter and View methodology was applied, was the visit announced or unannounced? 
N/A

Details of health and care services included in the report

Secondary care services 
End of life care
Social care services 
Hospice services at home

Details about conditions and diseases

What type of pregnancy or maternity themes are included in the report 
N/A

Details of people who shared their views

Number of people who shared their views 
46
Age group 
Not known
Gender 
Not known
Ethnicity 
Not known
Sexual orientation 
Not known
Does the information include public's views? 
Yes
Does the information include carer's, friend's or relative's views? 
Yes
Does the information include staff's views? 
No
What was the main sentiment of the people who shared their views? 
Mixed

Outcomes and impact

Were recommendations made by local Healthwatch in the report? 
Yes
Does the information contain a response from a provider? 
No
Is there evidence of impact in the report? 
No
Is there evidence of impact external to the report? 
Not known

Network Impact
Relationships that exist locally, regionally, nationally have benefited from the work undertaken in the report
 
Implied Impact
Where it is implied that change may occur in the future as a result of Healthwatch work. This can be implied in a provider  response, press release or other source. Implied impact can become tangible impact once change has occurred.
 
Tangible Impact
There is evidence of change that can be directly attributed to Healthwatch work undertaken in the report.