Stockport Together – Segmentation and Outcomes Framework
Expert Reference Group 3 – End of Life
25 July 2016 - Summary Notes
These notes summarise the discussions during the first End of Life (EOL) Expert Reference
Group (ERG), and accompany the presentation slides. At this stage, they do not indicate the
future EOL segment definitions or outcomes that will be developed in Stockport.
Dr Waterman emphasised that the ERG is not focusing on the clinical care / delivery of
services for people at End of Life, but instead needs to consider the outcomes these people
want (i.e. data that can be collected and contracted for).
Group Discussion 1: Defining the ‘end of life’ population group

The group considered several definitions: the Bridges to Health model which describes
the population cohort as a “short period of decline and ‘dying’”, the North West EOL Care
Model (pictured above), and previous Stockport work describing “individuals considered
to be in the last year or so of life, likely related to advancing progressive deterioration.”

Some felt that the ‘one year’ definition of EOL was too broad and discussion focused
on further defining the EOL stages (one year – months – weeks).
o There are various levels of EOL where a patient may live for 11 months versus
a patient who is in rapid decline and only has days to live.
o Planning of patient needs will be different for various EOL stages and needs
to begin in early conversations with the patient, family, and clinician.
o People’s preferences may differ based on their EOL stage.

The focus on patients aged 65+ was also discussed, as patients with specific diseases
will be younger than 65, and people at different ages or stages of life will have differing
EOL care needs.

With regards to the NW Care Model above, the group suggested that EOL care should
be primarily focused around patients in the “orange” category and beyond to the right,
rather than focusing on patients in the “green” categories. However, to get the best
outcomes for the patient, appropriate conversations and planning need to happen early
i.e. in the “green” one year time zone.

There are overlaps between the 4 ERGs that should be assessed so that no patients
‘fall through the cracks’. Also likely to be areas of overlap between EOL outcomes and
the other population groups, such as exacerbating long-term conditions and older people
with frailty and/or dementia.

Specific triggers need to be defined to determine EOL “deterioration” stages.
o It is difficult to define EOL – this is a clinical decision based on indicator
guidance, triggers, and professional experience.
o EOL characteristics can include advancing disease, rapid deterioration, or frailty.

The current EOL care model is based in the community and out of hospital. This needs
to be an integrated service between hospitals, hospice, social care and the home setting.
A draft flow diagram of a typical EOL care pathway was produced following the discussion:
No treatment feasible
Diagnosis
Treatment
Incurable Disease
Disease progression
despite treatment
Disease Cured / Survival
Deterioration /
Limited Life
Expectancy
End of Life
Care
Living with Disease
Choice of no treatment
Group Discussion 2: How to identify when a person is at the ‘end of life’?
The group was asked to define characteristics that identify when a person is at EOL,
including any differences between EOL stages i.e. a person with months versus days to live.
Identifying a person with a year to live:
Identifying a person with weeks/days to live:
1. Increasing symptoms
2. Increasing number of clinical visits/care
requests
3. Rapid change in function
4. Reduced activity/decline in mobility
5. Acute event or crisis leading to rapid decline
6. Patient self-recognition/concern
1. Progression of disease
2. Treatment failure
3. Knowing that the patient has a terminal
illness
4. Decision to change or stop treatment.
5. No change in patient outcomes
6. Determining what the patient wants
regardless of time

Research suggests that out of the c2,600 deaths in Stockport per year, around 70-75%
of people dying should be able to be identified before they reach their dying phase as
EOL, while 20-25% will be sudden deaths or not identifiable.

It is currently challenging to identify someone as End of Life – often don’t identify until
too late, meaning there is no plan or communication in place.
o Perspective likely to differ between clinician, patient and family
o Family may not want to accept or talk about end of life
o Also can be hindered by clinical culture focused on treatment – are they
comfortable being honest with patients?

Current differences between clinicians identifying people at EOL stages:
o GPs are often the decision-maker in the community - they may have patients on
a GSF register (identifying those with palliative care needs) as EOL.
o Patients are not routinely identified in hospitals as being in the last year of life rather only in final days of life.
o Patients who are in late EOL stages may be less likely to decline A&E services if
they know their wishes will be respected (e.g. pain relief, testing, admission to
long term care).
o In long-term planning in the community, who identifies a patient in EOL stages or
possible triggers are not defined.
o Specialists could help other professionals to identify those who may be
deteriorating within Discharge Letters back to Primary Care.
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Group Discussion 3: Identify available data sources for outcomes data
An outcomes-based approach is likely to impact the type of data that is collected for EOL
care e.g. requiring new outcomes data to be collected.
The group was asked to consider available data sources in various care settings:
Data Sources
Type of Data
EOL specific data, electronic portal for
1. EPAC
anticipating care needs for patients.
Alternative source for patients receiving EOL
2. Complex Care Plans
care, including details of care plans.
3. Stockport Health and Care
Data from health records can be audited to
Records
determine EOL outcomes.
4. District Nurse Notes via Dominic
Residential care specific, number of expected
system
deaths, Pain Control.
Hospice care specific, patient details such as
5. Hospice Records
ethnicity, age, disease, length of stay
Care home specific, % of deaths managed in
6. Care Home Records
home and number admitted to care.
All hospital deaths are audited - include details of
7. Hospital Records
patient death, expected deaths, symptom control,
and patient preference to die at home.
8. Advanced Care Plans
Audit of individual Advanced Care plans.
Provides EOL data including patients’ wishes,
9. Specialist Palliative Care Team
number of people discharged to die at home,
patient surveys, and feedback letters.
10. Care First
Death in Usual place of residence national data.
11. Preferred Place of Care (PPC)
Need to confirm accuracy iffully accurate
12. GSF Register
From GP surgeries
13. Special Patient Notes (SPN)
MasterCall
There was also a discussion of the types of data relating to various EOL stages:
Data at EOL Stage – Dying
Data at EOL Stage – After Death
1. Patient requests and care
given relating to
medication, pain control,
feeling of being listened to,
and questions being
answered.
2. National Audit Data of last
days of life care.
3. Holistic individual care
plans


1. EPAC data
2. Patient administration system for the
community(Lorenzo)
3. Palliative care rapid discharge data for patients who
go home to die
4. Number of patients who transfer from nursing home to
die in hospital (preference)
5. Data pertaining to bereavement services and support
for the family
6. Bereavement Project surveys
7. Macmillan yearly audits of patients and care givers
Need to think about how to measure impact on family or care-giver separately
from the patient.
Does measurement need to be specific to certain diseases?
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Group Discussion 4: What are personal outcome priorities for people at EOL?
Finally, the group individually considered the priorities of people at EOL. The discussion
emphasised how people’s preferences are extremely individual and variable. For
example, “manageable symptoms” will mean different things for each person.
The notes were captured in detail, and are shown below aggregated into key “themes”:
Key Themes
1.
2.
3.
4.
5.
6.
7.
8.
9.
10.
11.
Number of comments
To be in control and be listened to (myself and family)
To be kept informed / people being honest with me
To have my pain controlled /symptoms managed
To receive high quality / responsive care
To be comfortable/clean/at home
To maintain my dignity and be treated with respect / as an individual
To be with loved ones /not alone
To have my family cared for and supported at all stages
To receive emotional and psychological support
To have planned my death / have finances in order
To not be a burden
22
9
9
9
7
7
5
5
3
3
2
Comments that were selected by people as their top priority are shown below:
Next Steps
1. Outcomes-Based Healthcare (“OBH”) will produce data definitions for each segment, to
clarify who is included in this population group, as well as any overlap or movement
between segments. Segmentation analysis will be completed by the end of August.
2. OBH will also produce an evidence based long-list of outcomes for each ERG, along with
a shortlisting tool to support decision-making. The next time that our ERG meets, we will
review this long list together and prioritise what we think are the most important
outcomes for our population group.
3. The plan is to focus on Clinical and Social Outcomes in October, and Patient-Reported
Outcomes in January. Further information will be sent out in advance of the meetings.
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