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End of Life Care in

Respiratory Disease ~ What

we did in Solihull

Sandy Walmsley RGN, MSc,

Lead Respiratory Nurse Specialist

Solihull Community Services

Joint Respiratory Clinical Lead~ West Midlands

Helen Meehan

Lead Nurse Palliative Care

Solihull Community Services

The Journey

• Starts with noticing symptoms and being given a diagnosis

• This is the point of no return...

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A story with no beginning

A middle that is a way of life

An uncertain and unlooked for end

Recommendation 21. There should be improved access to high quality end-of-life care services that ensure equity in care provision for people with severe COPD, regardless of

setting

• COPD carries an extensive morbidity and mortality yet there is little palliative care provision

• People with advanced COPD should be fully supported in the final stages of their disease

• Palliation of symptoms in advanced COPD should not be confused with terminal care at the end-of-life

• It is difficult to make an accurate prognosis at the end of life in COPD

• More accurate prognostic indicators require development to identify the end-of-life phase

• End-of-life care pathways for people with COPD require development and evaluation

(COPD Consultation on the Clinical Strategy, 2010)

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LIP project Solihull Care Trust Aim

• To improve identification of patients with end stage COPD, enabling proactive, coordinated care and support preferred place of care at the end of life

• These patients were supported by practices and community teams using:

– GSF

– Supportive Care Pathway

– Advance Care Planning (MY COPD and MY LIFE booklets)

Objectives of project

• Increase number of patients with COPD on GSF from 8% (baseline) to 14%

• Monitor patients with COPD on GSF who were offered ACP discussions

• Increase number of patients on Community Supportive Care Pathway

• Monitor achievement of PPC and place of death

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3. Assessment and care planning

• Community Nursing using Supportive Care Pathway (SCP) part 1

• MY LIFE booklet to support ACP

© West Midlands Strategic Health Authority 2006. SCP COMMUNITY version 1 2008 SCP sheet 1

SUPPORTIVE CARE PATHWAY COMMUNITY

INTRODUCTION

THE SUPPORTIVE CARE PATHWAY COMMUNITY

Care Plan and Multi-disciplinary Team Record of Visits for Supportive and Palliative Care

FOR IN-PATIENTS WITH SUPPORTIVE CARE NEEDS

This pathway was developed with support from Pan Birmingham Palliative Care Network

Guidelines for use of this documentation

This is a multidisciplinary document to be used by all health care professionals visiting the patient at home. All sections should be completed, none should be left blank.

This pathway is designed for adult patients with progressive life limiting illness where the focus of care is on comfort and quality of life.

Patients that have been identified for the Gold Standards Framework (GSF) Supportive/Palliative Care Register should be started on this pathway.

It is designed not to be excessively restrictive, nor does it dictate how patients should be managed, but it does offer guidelines.

Guidelines for the management of symptoms at the end of life are available both in each clinical area where this pathway is used and on the Trust intranet site

Professional judgement must be applied, whilst taking into account the patient’s wishes and needs. Any changes to suggested care within this pathway must be recorded as a variance on visit assessment sheet. The pathway should be used in accordance with the Mental Capacity Act.

Please contact the specialist palliative care team for additional advice and support, if required.

The aim of this document is to support the patient’s health needs alongside their spiritual, social and psychological ones.

6. Care in the last days of life

• SCP part 2 – comfort care in the dying phase

• Just in Case Boxes

• Comfort Care Boxes

• Hospice at Home service

Community Care Pathway for patients on the GSF / Palliative Register and in the Dying Phase – Part 2

Patient identified as being

in the dying phase

Home

Ongoing visits (minimum daily) by DN/community nurse to provide holistic nursing care according to the care pathway document

Refer to appropriate services to provide additional supportive care at home to work in partnership with DN/community nursing team

What is the preferred place of care?

Hospice, Care

Home or other

Liaise with appropriate service to enable preferred place of care

Assessment visits by GP and DN/community nurse and commence Care Pathway for the dying phase

Review Advance Care Plan and DNAR status

Just in Case Box/Anticipatory medication in patient’s home

Comfort Care Box in the patient’s home

Updated Patient summary forwarded to OOHs provider and OOHs community nursing

DN/community nursing continuation of care following patient death: including information on what to do following death, bereavement contact/visit within 1 week

Does patient have

specialist palliative care

needs?

Refer to Specialist Palliative Care (SPC) for

assessment +/- management in

partnership with primary care team

No Yes

Signs of the dying phase:

Profound weakness

Diminished intake of food and fluids

Difficulty swallowing or taking oral medications

Drowsy or reduced cognition

Bed bound

Needs assistance with all care

May be disoriented in time or place

Additional supportive care could include: 24/7 supportive care at home (night sitting, Marie Curie Nursing, hospice at home), existing package of social care

© West Midlands Strategic Health Authority 2006. SCP COMMUNITY version 1 2008 SCP sheet 1

SUPPORTIVE CARE PATHWAY COMMUNITY

COMFORT CARE

THE SUPPORTIVE CARE PATHWAY COMMUNITY

ONGOING ASSESSMENT COMFORT CARE – PART 2

The ongoing assessment should be undertaken by the multidisciplinary team when the decision is taken to commence the patient on the pathway

Date of commencement upon pathway

Patient Name: Address:

Patient ID/NHS number:

Tel:

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7. Care after death

• SCP part 3 – care after death

• Carer information and support

• Bereavement visit following patient death

© West Midlands Strategic Health Authority 2006 SCT(C)098v2/2011 – Solihull Care Trust Supportive Care Pathway for Adults PART 3

Replaces Ref No: SCT(C)097v1/2008 SCP sheet 1

SUPPORTIVE CARE PATHWAY COMMUNITY

CARE AFTER A DEATH

THE SUPPORTIVE CARE PATHWAY COMMUNITY

PART 3

CARE AFTER AN EXPECTED DEATH

This pathway documentation includes: Information on what to do following an expected death A template for record of verification of death A template for recording information and advice given following a death

Outcomes from Project

• COPD patients on GSF increased to 12% but then reduced to baseline owing to deaths

• 29% of patients dying at home (including care homes) in 2010/11 to 39% in 2011/12

• 71% of patients died in hospital in 2010/11 reducing to 59% in 2011/12

• All surgeries and Community Nursing using “My Life” booklet enabling ACP discussions

• Increased partnership working between MDT

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Outcomes cont • Training needs identified – particularly within the

hospices

• Patient & Carer survey revealed

– 76% very satisfied with opportunity to discuss what is important to them & coping with illness

– 84% very satisfied with involvement in discussion

– 76% very satisfied with information on future care

– 90% very satisfied with overall experience

• Community EOLC project

Objectives of the EOLC Project • Increase number of patients supported in community

on Supportive Care Pathway

• Improve coordination of care and reduce duplication

• Improve communication and information sharing across services

• Define the role of the District Nurse in EOLC

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Workshops and Process Mapping • 2 workshops and 1 meeting held with leads and senior

clinicians from all services involved in EOLC

• Workshop 1 Oct 2011: – Process mapping for all services – List of ‘snags’

• Workshop 2 Nov 2011: – Agreed priorities – Concerns, causes and countermeasures – Vision statements

• Meeting Dec 2011: – Agreed action plan

N o 1. PATIENT

IDENTIFIED AS EOL REFERRED INTO E.O.L.

PATHWAY

No 3. CARE PLAN DEVELOPED

No 2. PATIENT

IS ASSESSED

EOLC Workshops Current State Map

Productive Community Services

Spa CLN/CHC VW Heart FailureCOPD (Resp

Team)District Nurses Macmillan

Referrals to service by

others. All referrals

accepted & actioned.

Patient Referred from

acute service via NHS

CHC checklist (CLN)

Referrals to the service

by GP; Resp Team; Heart

failure

M.O.T.s with consultants

to identify EOL patients

Identify Patient in last 6-

12 months of life and

communicate to GP for

GSF and District Nurses

for Supportive Care

Pathway

Monthly GSF to identify

where on the register

"RAC"

Referrals received by fax

on Pan B'Ham network

Specialist Palliative Care

pathway referral form.

Referral from specialist

palliative care nurse in

acute hospital (CLN)

10% patients referred

onto District Nurses.

Adhoc attendance at GSF

meetings to feedback

condition of patient

Joint Clinics to

consultant In-Reach

onto Wards -

Identification of EOL

patients.

Referrals received from

Hospital, Specialist

Services, Virtual Wards

and GP's. Some via

phone, face to face, No

Referral forms or very

little information.

Referrals from

Consultants, specialist

nurses, GPS, District

Nurses, Care Homes,

Patient carerer, Self

Referral followed up

with GP

Inappropriate Fast Track

referrals (CHC)

Patients identified are

often difficult to refer

onto District Nursing.

Refer patient to

Macmillan/Palliative

care team if other

conditions require input.

Attend GSF meetings if

able.

Phone Macmillan to see

if they are aware of the

patient.

Referral comes from

multiple sources for full

assessment and Fast

Track (CHC)

Difficulty in joint working

when working with Non-

Cancer patients

Identify and

communicate to GP's the

need for patients to go

onto the GSF

Referral raised on Epex,

However not all patients

are put onto the register

by all staff.

Referrals from Hospital

Discharge.

About 60% +- patients

identified as not

currently on the GSF or

SCP

Open palliative care

Register

Spa for Agency

Management

Discuss in Hand over

meeting

District Nursing to

provided packages under

fast track.

3 monthly GSF meetings

with GP where diagnosis

and prognosis is

discussed

CHC referral- On

assessment identified as

EOL care.

Marie Curie, Nurse

Specialists Links and

Contacts

Marie Curie Nurse

Specialist Monthly

Meeting

No GSF meetings at

some surgeries

Enter onto Epex - Input

errors would be

eradicated if the input

fields were mandatory.

Initial referral to all

services or just to

immediate service

50% of Nurses failing to

input information.

Communication, Lack of

electronic records to link

all services - on-going

through all EOL.

No 1 - Identify Patient and Referrals

Spa CLN/CHC VW Heart FailureCOPD (Resp

Team)District Nurses Macmillan

Assessment to identify

need - Care delivered by

support workers

CHC assessment

undertaken and

discharge planned with

Multi-disciplinary team,

family and patient - plus

Equipment and

environment.(CLN)

Full assessment including

psychological, social

carried out by matrons

for all referred patients.

Key worker / Co-

Ordinator Who ?? - As

appears to be District

Nurses!

TPP - Paper records

reviewed at SPC MDT 1

week after referral.

Complete full assessment

and present to panel for

outcome decision - need

to be passed back to

Social services. Currently

Not Being done within

time scales(CHC)

Not all members of staff

confident to have

difficult conversations

about Place of Death and

Do Not Resuscitate.

Refer to Hospice at

Home / Spa or CHC

depending on condition.

Blue Bed Assess DLA/AA

+ DS1000

Fast Track Referrals

assess within 48 hrs. to

support with "POC"?

Identify Provider.(CHC)

Result of assessment

referrals made to other

agencies e.g.. DN's

Contact patient and

conduct introduction to

service and start care

plan.

Assess within 2/5/10

days depending upon

patient need.

Referrals from Spa to

support with night sits,

involves outside agencies

- note unable to use their

paperwork

All assessment

documents put onto

Epex

Ask patient families

concerns worries fears

request and documents.

Assess first by telephone

and agree time and date

for the 1st visit

After individual

assessment liaise with

the appropriate others -

DN;s , OT,s , Physio,

Marie Curie

E-mail sent to West

Midlands Ambulance

Service and Badger

informing them of

patient on the Virtual

Ward - On some

occasions Do Not

resuscitate status is sent

to them.

Contact and give contact

numbers as may not

want a visit - record

detail on Epex.

PC assessment including :-

Physical, Psychological,

spiritual and social

Sign posting on

assessment Difficult to

predict time of death

because of their long

term condition.

Assessment - lack of

communication between

services resulting in

repeat questions for

patients.

On assessment referral

to team social worker,

team Physio and team

pharmacist.

Make initial contact with

patient and family to

discuss plan of care.

No 2 - Assessment

Spa CLN/CHC VW Heart FailureCOPD (Resp

Team)District Nurses Macmillan

Base line care plan to

enable safe delivery of

care by support worker

Write care plan

summary for providers

and risk assessment.

Providers then write

own care plan (CHC)

Care plan developed

over 2-3 visits,

management plan

agreed with

patient/carer

Annual teaching to

community staff

Plan rescue medication

and O2 therapy and

night nurse if needed

Lack of available care

plans and printers not

working

Use specialist palliative

care if D/N stated in

care plan.

Qualified staff view

supportive care

pathway but do not

complete

Epex all assessments

and contacts(CHC)

On assessment full care

plan left in house.

Contact telephone

numbers left with

patient/carer

Telephone support to

GP's and district nurses

Patients have self

management plan

Full care plan part one Some of team will

initiate supportive care

pathway.

Care agencies write

their own care plans- do

not always have skills

and expertise

Provide rescue

medication plan to

patient

Annual training to

community staff

Find out what they

know and what they

want, what family

support they have

Specialist palliative care

templates on TPP

Care plan and risk

assessments forwarded

to care agency (CLN)

Joint visits with district

nurses to support care

plans

Telephone support for

DN's/GP's

Supportive care

pathway, education re

documentation for all

services as process not

used by all services

My life booklet offered

to patients to support

information

If plan is to go home,

multidisciplinary team

meeting arranged, liaise

with D/N, develop care

plan with patient and

family (CLN)

District nurse to

complete Gold Standard

Framework part 1 for

care plan

Care pathway

document not on care

plan print run for

community nursing

Referrals from

Heartlands for CHC do

not provide care plans

or risk assessment (CHC)

Supportive care

pathway implemented

and put in patients

home

CHC community unable

to use plans and risk

assessments written by

SPA whey they refer to

CHC

No 3 - Care Plan Development

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Developing step by step guidance Solihull Community Services End of Life Care Dependency Tool using GSF Status

DRAFT April 2012

Use of GSF ‘Surprise Question’ and Prognostic Indicator Guidance – including patients with non cancer diagnosis Community Nurses, Community Matrons, Respiratory and Heart Failure teams identifying patients Identification from discharge letters Liaising with GP when patients identified for the GSF register

Months / year

prognosis - stable

Identification of patients with

EOLC needs

Weeks /months prognosis -

sliding

Days / weeks

prognosis - dying Care after death

Verification of death completed and appropriate services notified Carer information on registering a death and bereavement support Carer bereavement needs assessed and referral for support if appropriate Reflection and learning reviewed at next caseload review meeting

Complete discharge screen on SystmOne indicating place of death Audit patient outcomes in EOLC

Named DN for patient responsible for case management Minimum monthly review and support from DN Care plan and Supportive Care Pathway PART 1 commenced by DN MY LIFE booklet - ACP discussions offered, outcomes recorded Refer & liaise with appropriate support services OOHs notified Carer’s needs assessment Complete SystmOne templates - GSF, ACP and care pathway

Minimum 2 weekly DN review and support using Supportive Care Pathway PART 1 Review ACP and preferred place of care DNACPR if appropriate & notify WMAS if DNACPR in place Refer & liaise with appropriate support services - Marie Curie Nursing or SPA Hospice at Home (see flow chart) OOHs updated Review carer’s needs Update Complete SystmOne templates - GSF, ACP and care pathway

Minimum daily DN/community nursing support & case management using Supportive Care Pathway PART 2 Review ACP, preferred place of death & DNACPR status Refer & liaise with appropriate support services - Marie Curie Nursing or SPA Hospice at Home (see flow chart) OOHs updated and WMAS Review carer’s needs Update Complete SystmOne templates - GSF, ACP and care pathway

Referral to Specialist Palliative Care for patients with complex palliative care needs

What do we want the reality to be? • Needs based care

• Choice – preferred place of care

• Reliable care

• Dignity

• Carers supported

• Staff supported

• Consistent, sustained, reliable services

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Conclusions

• EOLC is everybody’s business

• Patients are receptive to Advance Care Planning discussions

• We can make a difference

• The “journey’s end” is planned and prepared

Thank You