19/04/23

Gold Standards Framework in Care Homes

Nikki Sawkins – GSFCH Lead Nurse

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Plan of session

• Context of GSF in End of Life Care • What are the challenges?• What is GSF in Care Homes ?• Evaluation and Experiences of others• Developments and Plans• Are you interested? – Next Steps

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End of Life care

Do any of your patients ever die?

Then you need to think about end of life care.

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Clarification of Terms• End of Life care

• Pts living with the condition they may die from- weeks/months/ years • pts with advanced disease• 3 types of pt (cancer, organ failure ,frail elderly /dementia pts ) • ‘Ante-mortal’ care like ante-natal or early life care

• Supportive Care • Helping the patient and family cope better with their illness• not disease or time specific, ‘less end stage’• Preferred by some specialists- ‘everyone needs supportive care’

• Palliative care• holistic care (physical psychological, social, spiritual ) • specialist and generalist palliative care • Some regard as overlapping or following curative treatment

• Terminal care• Diagnosing dying-care in last hours and days of life

DeathEnd of Life Care

Supportive Care

Palliative Care

Terminal Care

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DEMOGRAPHIC TIME BOMB• More people are living

longer, with serious disease and increased symptom burdens

• Almost double life expectancy in 100 years

• Increased complexity in looking after patients with advanced disease at the end of their lives

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‘Why are we leaving it to luck?’ Joanne Lynn

“What will we need when we have to live with a fatal disease?

• We need reliability, We need a care system we can count on- Doing RIGHT thing at RIGHT time

• To make excellent care routine we must learn to do routinely what we already know must be done

• All that it takes is innovation, learning, reorganisation and commitment”

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Death

High

LowTime

Function

Death

High

LowTime

Function

Organ failure

6

Other2

Dementia, frailty and decline

7

Added Value 2: Caring for people with non-malignant conditions and the frail elderly

Death

High

LowTime

Function

5

Cancer

GP has 20deaths per year

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Key Factors with end of life care of elderly

• Multiple co-morbidities• Increasing memory loss/dementia• Difficulty predicting prognosis • Difficulty predicting dying phase• Complex social/ health factors• Need protection from over

intervening - eg DNAR, trolley deaths

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Place of death Higginson I (2003) Priorities for End of Life Care in England

Wales and Scotland National Council Place: Home Hospital Hospice

CareHome………………………………………………………………

……………Preference 56% 11% 24% 4%

Cancer 25% 47% 17% 12%

All causes 20% 56% 4% 20%

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Gold Standards Framework

3 Programmes of work:

• GSF in Primary Care

• GSF in Care Homes

• EOLC developments and support

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The Gold Standards Framework

A framework to deliver a ‘gold standard of care’

for all people approaching the end of

their lives

A systematic approach to optimising the care delivered by healthcare professionals

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A good death for all

“Our aim is that every person should be able to live well and die well in the place and in the manner of their choosing”

But how?

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Gold Standards Framework in Community Palliative Care

The Aim for Primary Care and Care Home teams:

to develop a practice-based/care home based system to improve

the organisation and quality of care of patients/residents in the last year/s of life in the community/care home

So generalist better dovetail skills with specialists

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Head Hands and Heart of Community Palliative Care

HEAD

- knowledge

- clinical competence

- ‘what to do’

HANDS

- process/organisation

- systems

- ‘how to do it’HEART

-compassion/care

-human dimension-’why’

- experience of care

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The GoldGold Standard of

end of life care “The care of ALL dying

patients

is raised to the level of the

best.” (NHS Cancer Plan 2000)

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GSF 3 Steps : ……then provide

1. Identify

2. Assess

3. Plan

+ com

munic

ate

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5 Goals of GSFPatients are enabled to have a

‘good death’

1) Symptoms controlled2) Preferred place of care 3) Safe + secure with fewer crises4) Carers feel supported, involved,

empowered, and satisfied.5) Staff confidence, teamwork, satisfaction, co-working with specialists and

communication better.

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7 Key tasks/ standards-The GSF 7 Cs

C1 CommunicationSC Register and PHCT Meetings, Pt info, PHR,

Advanced care planning (ACP) eg PPC

C2 CoordinatorKey Person, assessment tools eg PEPSI COLA

C3 Control of SymptomsAssessment, body chart, SPC ,ACP etc

C4 Continuity Out of HoursHandover form + OOH protocol

C5 Continued LearningLearning about conditions on patients seen

C6 Carer SupportPractical, emotional, bereavement, National Carer’s Strategy

C7 Care in dying phase- LCP / ICP for care in last few days

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Underlying assumptions of GSF

Care for people who are dying is important!

Most want to give best end of life care –GSF enables and encourages this

Developed from primary care for primary care Developed and adapted for care homes by care homes

- ‘from the bedside not the boardroom’ Raise awareness of dying pts and measures Framework not prescriptive -Adapt and adopt- Becomes standard practice -’this is what we do’ Patient/resident focussed- Proactive- Think of future

needs Encourages creativity and pride in our work National momentum-Share learning and ideas with

others If it was you……….

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In hours Proactive Palliative Care-

Avoidance of crisis-eg GSF/GSFCH Anticipatory care helps avoid crises-improved support for residents, families + staff-reduction in hospital/hospice admissions (12% reduction in crisis admissions at EOL - phase 2)-achievement of preferred place of care/death (8% reduction Hospital deaths)

….and reduce fear

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GSF Supported Spread Cascade

National team

Co-ordinatorsFacilitators

SHA, Ca Network

GSF Project group

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GSF Spread UK wide

Use of GSF

About 3800 practices – over a third of all practices in England. Over 80% of PCTs

Over half practices in Scotland, a third in Northern Ireland, beginning in Wales and

other countries

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So… What do we know?

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GSF Evaluation Nationally• Better identification and tracking of patients

• More noting+attaining preferred place of death

• Better communication, teamwork and planning

• Fewer crises/admissions

• Better organisation + consistency of standards eg use protocols, assessment tools, information, bereavement care , even under stress

• Better co-working with specialists

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GSF Evaluation Nationally1. Attitude, approach, awareness – qualitative factors

that underpin the culture of practice, hard to measure, but often the most valuable

2. Processes and patterns of working – practical system redesign processes that are more structured and formalised

3. Outcomes – reduces hospital admissions, reduced hospital deaths, more advance care planning discussions

GSF Evaluation by the University of Birmingham

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GSFCH Care Homes Planning- 2003/4- GSF adapted for Care Homes Phase 1 pilot- -May- Dec 04• 12 care homes in 6 areas• Report March 05

Phase 2 pilot-June 05- Feb 06• 100 care homes with 35 facilitators-18 /28 SHAs • Research study Birmingham University funded by

Macmillan

Phase 3 Programme -June 06- Feb 07• About 250 care homes – 3 bases –Crawley phase 3a • Continuing evaluation

• Phase 3b – Crawley and Phase 4 Programme June 07 –March 08 Open and Commissioned areas.

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Stage I Preparation Stage II Training Stage III Consolidation + Sustainability

3-6 months 4 workshops in 9 months 9 – 12 months

Awareness Raising Meeting

Local Coordinators Meetings

Workshop 1

Workshop 2

Workshop 3

Workshop 4

GSFCH Accreditation

ADAAfter

ADABefore

Final Appraisal

Ongoing ADA

Enrolment of Care Homes

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Gold Standards Framework in Care Homes - GSFCH

Aims

1. To improve quality of end of life care

2. To improve collaboration with primary care and specialists

3. To reduce admissions to hospital in the last stages of life

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Context

• Half a million people live in Care Homes-about 1% Approx 20% people die in Care Homes

• 86% all deaths in people over 65, 51% in people over 80 For every NHS bed, there are 3 Care homes beds

• The sector employs about 1.2 million people• People stay on average 2-2.5 years in Nursing Homes• An average N. Home with about 30 beds might expect

about 1 death/ month, or about a third/quarter turnaround /year

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“ If you are old and in a care home, you know you are probably going to die quite soon. Most older people don’t think that dying is a tragedy, though they do think that dying with unresolved issues is.”

Prof Ian Philp

National Director for Older people The Times Sat 3.6.06

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End of Life Care- Getting it right

They’ll never forgive you

if you don’t

They’ll never forget you

if you do

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Experience of GSFin Care Homes

• Attitudes, awareness and approach eg confidence all staff, care needs focus,

proactive care

• Patterns of working, structure/ processes eg communication all staff, recording,

information sharing • Outcomes eg more advance care plans, fewer crises, better quality of dying, staff feel valued

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Does using GSF help patients with end of life care needs in

care homes?• It helps coordination and communication• It helps confidence of staff• It helps us focus and measure • It helps kick start changes• It helps specific things like needs based

coding, Advance care plans, anticipatory prescribing, communication with GPs etc

Y E S

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GSFCH Open Programme Plan

Phase 4 -Walsall

ADA ADA Preparation Introduction Consolidation

consolidation/embedding July 2007

…………..First gear………….Second gear………..Third gear……….Fourth gear

Workshops

26 Sept 07 5 Dec 07 27 Feb 08 7 May 08

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Four Gears

1. Getting going1. Coding, Register2. Meeting,3. Coordinator

2. Moving on1. Assessment of

symptoms + Advanced care Planning

2. Out of hours continuity3. Education and

reflection

3. Gaining Speed1. Education and reflection2. Carers and family

support Bereavement (and staff)

3. Care in Final days

4. Cruising1. Sustain2. Embed3. Extend

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Phase 4 Evaluation

1. After Death Analysis – Electronic Format – Register on line– Background information– Last 5 patient deaths before and after

GSF introduction– What went well, what didn’t go so

well, what could we do better.– Feed back of information.

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Online After Death Analysis (ADA) Audit Tool

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Networking and speed-dating

• Sharing experiences with others – key to learning,finding solutions to some of the challenges, sharing good ideas, handy hints.

• Eurekas ‘Things that have worked for us……’

• ‘Speed dating’- capturing specific topic issues

• Good Practice Guide – shared learning and experience

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SO WHAT!

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Reactive patient journey-MR B in last months of life-

• Care Home –no discussion wishes for end of life (only burial/cremation) -no PPOC discussed or anticipated

• Problems with symptom control-high anxiety• Crisis call eg OOH-no plan or drugs available - GP

sent ambulance• Admitted to hospital – disorientated.• Dies in hospital ?over intervention/medicalised• Carer support in grief by care staff• No reflection/improvements by care home/GP• ? Inappropriate use of hospital bed

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GSF Proactive pt journey- Mrs W in last months of life

• Coded on Register-discussed at Care Home GSF meeting• Focus of care at stage of life• Regular discussion and planning with care home/GP/SPC -

proactive care• Assessment of symptoms -referral to SPC-customised care for

resident • Carer involvement in care/decision (residents wish)• Advanced Care Plan completed with resident and family -

Preferred place of care noted and planned.• Handover form issued –ACP wishes – anticipatory drugs issued

in care home• End of Life pathway/LCP/protocol used• Pt dies in preferred place- the care home fully supported by

well trained staff. Bereavement support – for all .• Staff reflect-ADA and SEA - audit gaps improve care, learn

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GSF and GSFCH is part of the jigsaw

GSF/GSFCH is part of the jigsaw to enable proactive end of life care for all.

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GSF and Prognostic Indicator Guidance

• Development of a Prognostic Indicator Guidance paper – PIG, in consultation with national leads and organisations

• More challenging identifying patients with non-cancer for SC register

• Evaluation shows that 60% of practices are including non cancer patients on the GSF registers within 12 months of implementation

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GSF - Advance Care PlanningGSF template includes:

• Thinking ahead - open questions - what matters to pt /

carer - what to do and what not to do

• Proxy - who else involved (LPOA)

• Who to call in a crisis

• Preferred place of care & death

• Other requests eg organ donation / special instructions

ACP Dec 06 v 13

Gold Standards Framework and the Supportive Care Pathway Draft 7

Thinking Ahead - Advance Care Planning

Gold Standards Framework Advance Statement of Wishes The aim of Advance Care Planning is to develop better communication and recording of patient wishes. This should support planning and provision of care based on the needs and preferences of patients and their carers. This Advance Statement of wishes should be used as a guide, to record what the patient DOES WISH to happen, to inform planning of care. This is different to a legally binding refusal of specific treatments, or what a patient DOES NOT wish to happen, as in an Advanced Decision or Living Will. Ideally the process of Advance Care Planning should inform future care from an early stage. Due to the sensitivity of some of the questions, some patients may not wish to answer them all, or to review and reconsider their decisions later. This is a ‘dynamic’ planning document to be reviewed as needed and can be in addition to an Advanced Decision document that a patient may have agreed. Patient Name: Address: DOB: Hosp / NHS no:

Trust Details: Date completed:

Name of family members involved in Advanced Care Planning discussions: Contact tel: Name of healthcare professional involved in Advanced Care Planning discussions: Role: Contact tel: Thinking ahead…. What elements of care are important to you and what would you like to happen? What would you NOT want to happen?

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ACPs in care Homes

• Improved communication with residents and families early on

• Improved planning of care• Reduced crises • Helped formalise discussion using a tool• Some gave to families, some senior nurses• DNAR difficult- prefer ‘Allow Natural death’.• Some found they were difficult discussions • All liked having them – useful and clear

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Difficulties with ACPs

• Bring up the subject• Communication difficulties• Discussing options- ?unrealistic• DNAR discussion• Family tensions• Staff resistance• Updating them • Communicating them

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How do we cascade the information? - GSF Website

• 800 hits per day• Information on GSF,

resources and new developments

• Links to the online audit tool

• Plan to update for Autumn 07 with protected sections for registered practices, care homes and PCT facilitators/SHA leads

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For more information on GSF

National GSF team – Judy Simkins - GSF / GSFCH Administrator

Tel: 0121 465 2029

GSFCH LEAD Nurse - Nikki Sawkins nikki.sawkins@nhs.net Email:• info@goldstandardsframework.co.ukWebsite:• www.goldstandardsframework.nhs.uk

NHS End of Life Care Programme• www.endoflifecare.nhs.uk