Constructing the end of life: tools, conversations, ideas of home

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Summary of report content

Healthwatch Essex researchers conducted a study on the challenges that patients and professionals experience in trying to complete ACPs. In this report, Healthwatch Essex show how planning for the end of life is more complicated than it is imagined in the form of making a single, written plan. Research took place at Basildon and Thurrock University Hospital’s palliative medicine and renal departments. Healthwatch Essex spent 16 weeks in two clinics and wards; renal and palliative medicine. After gaining verbal and/or written consent from patients, Healthwatch Essex observed clinic consultations and ward rounds two to three days per week. Healthwatch Essex observed approximately 150 consultations and attended almost 100 ward rounds over the course of the fieldwork. Healthwatch Essex interviewed staff formally and informally over the 16-week research period, who we had observed and informally interviewed patients. Healthwatch Essex interviewed GPs across Essex on their views and experiences of end of life care planning and its challenges. In this summary, Healthwatch Essex have outlined the ways that planning can be obstructed due to the inherent unpredictability of physiological and social processes, contexts and the circumstances that shape the ways planning conversations take place, or not at all. Healthwatch Essex have described the ways that planning is often about the journey patients take in thinking through their wishes and expectations for end of life, rather than about the plan itself. Therefore, while end of life discussions took place over the course of our study, these were rarely a single conversation encompassing the entirety of end of life planning. Nor were the patients, symbolically concretising their choices. The discussions and journeys of planning were in many ways more important to patients and their medical team than the outcome of a formal written document.

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General details

Report title 
Constructing the end of life: tools, conversations, ideas of home
Local Healthwatch 
Healthwatch Essex
Date of publication 
Monday, 1 January, 2018
Date evidence capture began 
Monday, 1 January, 2018
Date evidence capture finished 
Monday, 1 January, 2018
Type of report 
Report
Key themes 
Communication between staff and patients
Continuity of care
Quality of staffing
Service delivery organisation and staffing
Healthwatch reference number 
Rep-7105

Methodology and approach

Was the work undertaken at the request of another organisation? 
No
What type of organisation requested the work 
N/A
Primary research method used 
Observation
Structured interview
Unstructured Interview
User stories
How was the information collected? 
Visit to provider
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

Details of people who shared their views

Number of people who shared their views 
150
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? 
Yes
Types of health and care professionals engaged 
All care professionals
Does the information include other people's views? 
No
What was the main sentiment of the people who shared their views? 
Positive

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? 
Yes
Is there evidence of impact external to the report? 
Yes
What type of impact was determined? 
Implied Impact
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.