the liverpool care pathway what have we learned which should guide the future?

The Liverpool Care Pathway

What have we learned which should guide the future?

1. Clinical issues2. Health system issues3. Societal issues4. Scottish Government

DEANS BUCHANANCONSULTANT IN PALLIATIVE CARE,

NINEWELLS HOSPITAL

I don’t read the Daily Mail….but

Outline

The intentThe good bitsPersonal experience of the less good bitsWhat others saidNow and onwards

Discussions with passion

Can be hard to think through, talk through and work through

Not everyone thinks/feels the sameThere is a need to hear all voices within the

discussion, consider and then work through

Disclaimer

Critique of the LCP has often been difficult within palliative care

The LCP was not a ‘bad’ toolThe domains are goodThe intent was goodGood intentions are not enough

The intent

Aimed to introduce the minimum standards for good quality end-of-life care into acute setting

A product of the times – ‘ICP’Last ‘72hrs’ when dying was clearly

recognisedNot for all patientsTo evolve

Version one to version 12 Generic to specific – renal LCP, ICU LCP and A&E LCP CELT Tool

The good bits

Concepts For the ‘dying’ Domains of importance

StructureDocumentationClear decision madeAudit intent

The less good bits

Unintended consequences Complex intervention into complex systems

‘One size fits all’ IF not used thoughtfully‘Thoughtlessness’ – perhaps not unusual in busy,

pressured environmentsNot automated in terms of meds but ‘label’ of ‘on

LCP’ could suppress wider thinking/rethinking72 hours seemed to be forgotten over timeInitial versions had ‘2 of 4 boxes’ to aid

recognising dying – too easily were considered as the way to ‘diagnose’ dying (revised over time)

The less good bits

Audit of documentation not of outcomesUsed in hospices differently from hospitals –

i.e. highlights differences in understandingProbably more open to lack of considered use

in large institutions versus small institutions/small teams

Language of ‘achieved’ versus ‘variable’ drove interventions in one direction

Clinical language sometimes changed from ‘this person is dying’ to ‘they fit the LCP criteria’

Personal Experience

‘Dying’ We teach this can be difficult to recognise Can be very uncertain in acute setting

Referral for End of Life Care…….again Palliative label not always helpful when uncertainty a

key feature or dual approach needed (Treatment trial)

Hypoglycaemia – ABCDE and ‘DFG’ or ‘DFFG’Everton Supporters……..

One size doesn’t fit all Can have scenarios where goals of care are better

served by not ‘achieving’ eliminating variancePaper doesn’t always match reality – asked to

review re: pain. LCP pain control ‘achieved’

Personal Experience

Senior and MDT decision-making important but not always present

Out of hours – what was the rush?‘For LCP’ – not a proxy for thoughtful,

individualised end of life careExecutive teams – LCP implemented/job doneUncertainty issues exaggerated in non-

malignant disease

What others said

‘Not individualised’Harms documented

483 written submissions from members of the public 113 direct meetings with members of the public with experience

of LCP as patients or relativesContext mattersCommunication variableConsent and capacity issuesMoney/incentives in NHS England really did not help Just need more educationSeemed to be healthcare teams doing this ‘to’ people

i.e. not ‘with’ or ‘for’ people

Is this paradox of position related to:

Questions of mortality are difficultAutonomy – where does the control

lie?

What we are saying now

Initial shock and anger from within specialty Good tool and the press has brought it down Tools are neutral, it’s how you use them Education only needed then it’s okay Rebrand and re-launch

Further consideration Higher priority for end of life care at executive level Need to understand the public’s concerns even if

reported in unhelpful way Resources are a big question Tools are not neutral – design/language and structure

leads use and can be open to unintended consequences What makes sense of public/media reaction against LCP

versus public/media support of physician assisted suicide

Now and Onwards

Guidance not protocolsFrameworks/Plans not pathways

Learn from others – e.g. ‘birth plans’ Prompts/triggers/nudges of thoughtful,

individualised careEnsure competence and thoughtfulness is the

baseline positionResearch integrated into this and ‘outcomes

of care’ not just ‘care process achieved’ considered

Now and Onwards

A once in generation opportunity of making end of life care core business for all settings of healthcare

Executive responsibility for outcomes and resourcing provision re: PEOLC

Public debate very healthyIn medical institutions - medications are the

easy bit, retaining the humanity of individuals who are dying is the hard bit

A chance to position interventions in terms of being person-centred

ACP – Are patients/people/individuals in the driving seat?

The Liverpool Care Pathway

What have we learned which should guide the future?

1. Clinical issues2. Health system issues3. Societal issues4. Scottish Government

Checklists and structured documentation have a continuing role to play in reliably delivering good care in the last days and hours

1 2

14%

86%1. Agree2. Disagree

“Being at risk of dying” is a more useful term than “diagnosing dying” for many patients with non-malignant disease

1 2

33%

67%1. Agree2. Disagree

The Liverpool Care Pathway

What have we learned which should guide the future?

1. Clinical issues2. Health system issues3. Societal issues4. Scottish Government