Expert Reference Group 3 – End of Life

25 July 2016- Summary Notes

These notessummarise 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 consideredseveral definitions: the Bridges to Health model whichdescribes 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).
  • 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.
  • Planning of patient needs will be different for various EOL stages and needs to begin in early conversations with the patient, family, and clinician.
  • 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 thebest 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 assessedso that nopatients ‘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.
  • It is difficult to define EOL – this is a clinical decision based on indicator guidance, triggers, and professional experience.
  • 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:

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. 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
/
  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

  • Research suggests that out of the c2,600 deaths in Stockport per year, around 70-75% of people dying should be able to be identifiedbefore they reach their dying phase as EOL, while 20-25% will be sudden deaths or not identifiable.
  • It is currently challenging to identify someone asEnd of Life – often don’t identify until too late, meaning there is no plan or communication in place.
  • Perspectivelikely to differ between clinician, patient and family
  • Family may not want to accept or talk about end of life
  • Also can behindered by clinical culture focused on treatment – are they comfortable being honest with patients?
  • Current differences between clinicians identifying people at EOL stages:
  • 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.
  • Patients are not routinely identified in hospitals as being in the last year of life - rather only in final days of life.
  • 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).
  • In long-term planning in the community, who identifies a patient in EOL stagesor possible triggers are not defined.
  • Specialistscould help other professionals to identify those who may be deteriorating within Discharge Letters back to Primary Care.

Group Discussion 3: Identify available data sources for outcomes data

An outcomes-based approachis 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 consideravailabledata sources in various care settings:

Data Sources / Type of Data
  1. EPAC
/ EOL specific data, electronic portal for anticipating care needs for patients.
  1. Complex Care Plans
/ Alternative source for patients receiving EOL care,including details of care plans.
  1. Stockport Health and Care Records
/ Data from health records can be audited to determine EOL outcomes.
  1. District Nurse Notes via Dominic system
/ Residential care specific, number of expected deaths, Pain Control.
  1. Hospice Records
/ Hospice care specific, patient details such as ethnicity, age, disease, length of stay
  1. Care Home Records
/ Care home specific, % of deaths managed in home and number admitted to care.
  1. Hospital Records
/ All hospital deaths are audited - include details of patient death, expected deaths, symptom control, and patient preference to die at home.
  1. Advanced Care Plans
/ Audit of individual Advanced Care plans.
  1. Specialist Palliative Care Team
/ Provides EOL data including patients’ wishes, number of people discharged to die at home, patient surveys, and feedback letters.
  1. Care First

  1. Preferred Place of Care (PPC)
/ Death in Usual place of residence national data. Need to confirm accuracy iffully accurate
  1. GSF Register
/ From GP surgeries
  1. Special Patient Notes (SPN)
/ MasterCall

There was also adiscussion 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 givenrelating 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?

Group Discussion 4: What are personal outcome priorities for people at EOL?

Finally, the group individuallyconsideredthe 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 / Number of comments
  1. To be in control and be listened to (myself and family)
/ 22
  1. To be kept informed / people being honest with me
/ 9
  1. To have my pain controlled /symptoms managed
/ 9
  1. To receive high quality / responsive care
/ 9
  1. To be comfortable/clean/at home
/ 7
  1. To maintain my dignity and be treated with respect / as an individual
/ 7
  1. To be with loved ones /not alone
/ 5
  1. To have my family cared for and supported at all stages
/ 5
  1. To receive emotional and psychological support
/ 3
  1. To have planned my death / have finances in order
/ 3
  1. To not be a burden
/ 2

Comments that were selectedby 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 populationgroup, as well as any overlap or movement between segments. Segmentation analysis will be completed by theend of August.
  1. 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.
  1. 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.

1