“A good send-off?” Patients’ and families’ experiences of End of Life Care

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Summary of report content

Healthwatch Brighton & Hove talked to 15 patients on the Oncology Ward at the Royal Sussex County Hospital about their discharge from hospital between November 2019 and January 2020 and followed up with them once discharged.

All the people they spoke to had been in hospital longer than one week (‘stranded’) or longer than 3 weeks (‘super stranded’) and all had been in hospital numerous times before, with most being readmitted through the Emergency Department (ED). Patients fared better when they had support from specialist services for their End of Life Care such as the Hospital Discharge Team, the hospital Palliative Care Team and Martlets Hospice.

Consideration needs to be made around the appropriateness of terminally ill patients having the same pathway as other patients in ED. Questions were raised around how NHS staff, patients and families understand the role of a hospice. There was confusion for families about what services were available in the community and how they could be accessed.

Interviews with families and patients demonstrated the need for improvement in how they are informed and involved in treatment choices and care at end of their life. More routine information is needed for both patients and their families to access the support that is available

Quality standards and agreed policies and practices need to be in place to support ‘a good death’. All those involved in End of Life Care need to establish a shared understanding of what ‘a good death’ looks like, including actively involving patients and families, by engaging with them. There are pockets of excellent care which can inform this

The report contains 10 recommendations to improve end of life care.  The report includes responses from service providers. 

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General details

Report title 
“A good send-off?” Patients’ and families’ experiences of End of Life Care
Local Healthwatch 
Healthwatch Brighton And Hove
Date of publication 
Wednesday, 30 September, 2020
Date evidence capture began 
Friday, 1 November, 2019
Date evidence capture finished 
Friday, 31 January, 2020
Type of report 
Key themes 
Communication between staff and patients
Holistic support
Information providing
Quality of care
Service delivery organisation and staffing
Staff training
Healthwatch reference number 

Methodology and approach

Primary research method used 
Structured interview
How was the information collected? 
If an Enter and View methodology was applied, was the visit announced or unannounced? 

Details of health and care services included in the report

Secondary care services 
End of life care

Details about conditions and diseases

Conditions or diseases 

Details of people who shared their views

Number of people who shared their views 
Age group 
Not known
Not known
Not known
Sexual orientation 
Not known
Does the information include public's views? 
Does the information include carer's, friend's or relative's views? 
Does the information include staff's views? 
Does the information include other people's views? 
What was the main sentiment of the people who shared their views? 

Outcomes and impact

Were recommendations made by local Healthwatch in the report? 
Does the information contain a response from a provider? 
Yes action has been taken or promised
Is there evidence of impact in the report? 
Is there evidence of impact external to the report? 
Not known
What type of impact was determined? 
Tangible impact (not cost related)

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.