Wednesday, 28 November 2012

Liverpool Care Pathway – A Design For Death

This is not a dole queue; it is a death queue...
A Design for Death 
 Knowledge gives us power
Aber arbeit macht frei 
Just the silence of the Lamb; an eternal peace, not dignity  

No good taking to the bottle
That won't take away the hurt and the scars
That show from where we came

They don't talk about life, They raise the spectre of death
No kiss it better, repair or mend
As we are told that this is the end

A design for death
A design for death
A design for death
A design for death
[Paraphrased from: "A Design for Life" - Manic Street Preachers]
Once the mindset is set on this path, The Pathway is the only outcome.

"People are ‘approaching the end of life’ when they are likely to die within the next 12 months." 

The Surprise Question: ‘Would you be surprised if this patient were to die in the next few months, weeks, days’? 

This 'challenge' question is not new. The St. Mungo workers have been 'challenging' themselves for some time! Now, it has wormed its way into the surgery. 

Watch out, you old-uns, next time you're sat opposite the quack and he seems to be looking at you strangely, sizing you up perhaps, it might be for benefit of the undertaker! 

This is from the GSF Prognostic Indicator Guidance - 

The GSF Prognostic Indicator Guidance 
The National GSF Centre’s guidance for clinicians to support earlier recognition of patients nearing the end of life
Why is it important to identify people nearing the end of life?

‘Earlier identification of people nearing the end of their life and inclusion on the register leads to earlier planning and better co-ordinated care’
(GSF National Primary Care Snapshot Audit 2010 )

About 1% of the population die each year. Although some deaths are unexpected, many more in fact can be predicted. This is inherently difficult, but if we were better able to predict people in the final year of life, whatever their diagnosis, and include them on a register, there is good evidence that they are more likely to receive well-co-ordinated, high quality care.

This updated fourth edition of the GSF Prognostic Indicator Guidance, supported by the RCGP, aims to help GPs, clinicians and other professionals in earlier identification of those adult patients nearing the end of their life who may need additional support. Once identified, they can be placed on a register such as the GP’s QOF / GSF palliative care, hospital flagging system or locality register. This in turn can trigger specific support, such clarifying their particular needs, offering advance care planning discussions prevention of crises admissions and pro-active support to ensure they ‘live well until they die’.

Definition of End of Life Care
General Medical Council, UK 2010
People are ‘approaching the end of life’ when they are likely to die within the next 12 months. This includes people whose death is imminent (expected within a few hours or days) and those with:
 Advanced, progressive, incurable conditions
 General frailty and co-existing conditions that mean they are expected to die within 12 months
 Existing conditions if they are at risk of dying from a sudden acute crisis in their condition
 Life-threatening acute conditions caused by sudden catastrophic events.

The Surprise Question: ‘Would you be surprised if this patient were to die in the next few months, weeks, days’?

The same flow chart formula is employed -

“Using the GSF ‘PIG’ has helped us to identify these patients earlier than we previously did, especially those with non-cancer, thereby giving them earlier support as they face the end of their lives, leading to fewer crises and hospital admissions.” (GP using Next Stage GSF Training Programme ‘Going for Gold’)

‘It is recommended that people approaching the end of life are identified in a timely way.’
(Draft Recommendation NICE Guidance in End of Life Care 2001)

“For many people suffering from a chronic illness, a point is reached where it is clear that the person will die from their condition. Despite this, for many conditions it may be difficult, if not impossible and potentially unhelpful, to estimate prognosis accurately. The Prognostic Indicator Guidance developed as part of the Gold Standards Framework (GSF) provides useful prompts or triggers to a healthcare professional that discussions about the end of life should be initiated, if this has not already happened”. (DH End of Life care Strategy 2008 England)

Development of this guidance paper. This guidance was originally commissioned from the GSF Centre in June 2006 to support GPs include appropriate patients on their QOF Palliative Care Registers i.e. those considered to be in the final 12 months of life. It is regularly revised following extensive consultation with clinical and disease specialist groups, palliative care specialists and GPs in the Royal College of General Practitioners. Particular thanks go to the NHS End of Life Care Programme and University of Edinburgh team for their help. Since publication, this Guidance has been widely used by clinicians in many sectors in the UK and internationally. A list of detailed references is available on request. This is one of several tools available to support improvements in End of Life Care, and further details on best use, IT support and further developments can be obtained from the GSF Centre.

The Gold Standards Framework Centre CIC 

The document concludes - "This guidance was originally commissioned from the GSF Centre in June 2006 to support GPs include appropriate patients on their QOF." 

Well, that explains a lot; that pre-dates by a year my mother's untimely demise at the hands of LCP nurses on the Pathway of which we were kept in blithe ignorance!


  1. Have you seen that the new head of the charities commission has warned against charities becoming too political and a junior partner in the welfare state?

    "In William Shawcross' first speech to charity sector at Acevo's annual conference, he said that "charities should not become junior partners in the welfare state", stressing that the independence of the sector is vital.

    "Charities which get state grants or contracts from government must be independent and focused on their mission," he warned.

    "Independence is about making decisions only on the basis of the best interests of the charity and its beneficiaries. Not the interests of funders - including government. Charities operate in a complex environment and are in ever fiercer competition for funding and contracts to deliver services. This competition is not a problem in and of itself. It may help drive innovation and keep charity trustees on their toes. But I wonder whether this development also places great strain on trustees to make decisions on behalf of their charities. These decision must be independent and reflect the interests of the charity only - not the interest of funders."

    He suggested that some charities risk becoming too dependent on the state, adding that most members of the public would say a charity was an organisation funded by private donations not public funds.

    Shawcross referred to a recent speech by the chief executive of the Charity Commission, Sam Younger, who warned that the charity brand was becoming "diluted". He said there needed to be a debate on whether the register of charities should make clearer what an organisation does and how it is funded.

    In his speech, Shawcross also defended charities' right to campaign, saying such activity had a long tradition in the UK."

  2. I wonder what view Mr Shawcross would take of a leading light of a palliative Care charity giving evidence to a parliamentary Select Committee in favour of palliative care and against euthanasia - thereby influencing government policy making?

    And of the extent to which those in the multi-billion pound palliative care industry have become partners of the EU?

    I also wonder what his view would be of the following:

    Sep 2010 - Nov 2010

    Luther Pendragon provided UK public affairs consultancy services to National Council for Palliative Care. [3]

    Luther Pendragon are a successful public affairs consultancy and lobbying firm.

  3. The Worldwide Palliative Care Alliance

    This seems to be based in UK, it produces a leaflet which includes a guide to Advocacy and lobbying policy makers:

    "PART 1 Introduction to Advocacy
    1.1 Definition
    1.2 Models of Advocacy
    1.3 Potential barriers to change when advocating on palliative care issues
    1.4 Why and when to advocate
    1.5 Targets for Advocacy
    1.6 Who should do advocacy
    1.7 Alliances and networks
    1.8 An Advocacy Framework
    1.9 Four factors are crucial to effective advocacy
    PART 2 Advocacy Tools
    2.1 Directly Influencing Policy.
    2.1.1 Analysing Legislation or Policies
    2.1.2.Position Papers
    2.1.3. Working from Inside the System
    2.1.4 Lobbying
    2.2 Monitoring"

    "[Advocacy] Is a process which can lead to

    change through influence

    Is a way of influencing public policy
    through information and communication

    Can act as a voice of the voiceless

    Is a way of directing decision-makers
    towards a solution

    Can be used to inform influential
    groups and raise their awareness of
    specific issues.

    Advocacy can achieve:

    Increased resources for hospice and
    palliative care and build the case for
    palliative care where it is not yet
    recognised or in existence

    Changes in restrictive policies and
    practices within countries e.g. for
    morphine use

    An increase in palliative care
    organisation’s profile amongst the
    public, the donor community and
    influential groups

    Broadly there are 3 aspects to

    Lobbying – influencing through direct,
    private communications with decision

    Campaigning – speaking publicly on
    an issue with a view to generating a
    response from the wider public.
    Educating –building understanding of
    issues to provide a more receptive
    context for change.

    Context for Advocacy

    This document inevitably focuses on how
    to approach advocacy on palliative care
    issues in democratic countries. Most, if
    not all, of the advocacy tools detailed are
    effective because either:

    Policy makers are influenced by public

    Governments are primarily concerned
    with the rights of their citizens.

    People have an influence on the

  4. From the National Council for Palliative Care's website:


    "By subscribing to NCPC you will support our work to research, lobby and campaign on end of life issues across health and social care. Together, we provide a strong voice on behalf of people providing and using end of life care services everywhere. The health and social care landscape is changing, with major reforms to the NHS and the way in which local authorities will work. NCPC will remain at the forefront of discussions. We will continue to help and support health and social care professionals and together with the Dying Matters Coalition we will ensure that good end of life care becomes a public priority too."