Breakout 4.4 End of Life Care in Respiratory Disease ~ What we did in Solihull Sandy Walmsley, Helen Meehan Solihull Community Services Joint Respiratory Clinical Leads Part of a set of presentations from NHS Improvement event: Better value, better outcomes held on Thursday 21 February 2013, Guoman Tower Hotel, London How to deliver quality and value in chronic care:sharing the learning from the respiratory programme

1. The Journey
End of Life Care in
• Starts with noticing symptoms and being given a
Respiratory Disease ~ What diagnosis
we did in Solihull
• This is the point of no return...
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
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2. 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
A story with no beginning • Palliation of symptoms in advanced COPD should not be
confused with terminal care at the end-of-life
A middle that is a way of life • It is difficult to make an accurate prognosis at the end of life in
COPD
• More accurate prognostic indicators require development to
An uncertain and unlooked for end 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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3. LIP project Solihull Care Trust Aim Objectives of project
• To improve identification of patients with end • Increase number of patients with COPD on GSF from
8% (baseline) to 14%
stage COPD, enabling proactive, coordinated
care and support preferred place of care at the • Monitor patients with COPD on GSF who were offered
end of life ACP discussions
• These patients were supported by practices and
community teams using: • Increase number of patients on Community
Supportive Care Pathway
– GSF
– Supportive Care Pathway • Monitor achievement of PPC and place of death
– Advance Care Planning (MY COPD and MY LIFE
booklets)
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4. 3. Assessment and care planning 6. Care in the last days of life
• Community Nursing using SUPPORTIVE CARE PATHWAY COMMUNITY
• SCP part 2 – comfort care in
Community Care Pathway for patients on the GSF / Palliative
Register and in the Dying Phase – Part 2
INTRODUCTION
Supportive Care Pathway Patient identified as being Signs of the dying
in the dying phase phase:
the dying phase  Profound
weakness
(SCP) part 1 Assessment visits by GP and DN/community nurse and
commence Care Pathway for the dying phase
 Diminished
intake of food
• Just in Case Boxes
and fluids
 Review Advance Care Plan and DNAR status  Difficulty
THE SUPPORTIVE CARE  Just in Case Box/Anticipatory medication in swallowing or
• MY LIFE booklet to support
patient’s home taking oral
PATHWAY COMMUNITY
 Comfort Care Box in the patient’s home medications
• Comfort Care Boxes
 Updated Patient summary forwarded to OOHs  Drowsy or
provider and OOHs community nursing reduced
cognition
ACP Care Plan and Multi-disciplinary Team Record of Visits for Supportive and Palliative Care


Bed bound
Needs
assistance
• Hospice at Home service
Guidelines for use of this documentation
with all care
What is the  May be
 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. Hospice, Care preferred disoriented in
Home or other place of time or place
 This pathway is designed for adult patients with progressive life limiting illness where the care?
FOR of care is on comfort and quality of life.
focus IN-PATIENTS WITH SUPPORTIVE CARE NEEDS
Additional
 Patients that have been identified for the Gold Standards Framework (GSF) supportive care
Supportive/Palliative Care Register should be started on this pathway. SUPPORTIVE CARE PATHWAY COMMUNITY Liaise with could include:
COMFORT CARE
appropriate 24/7 supportive care at
 It is designed not to be excessively restrictive, nor does it dictate how patients should be service to enable
managed, but it does offer guidelines. Home home (night sitting,
preferred place Marie Curie Nursing,
 Guidelines for the management of symptoms at the end of life are available both in each of care hospice at home),
clinical area where this pathway is used and on the Trust intranet site existing package of
social care
 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.
THE SUPPORTIVE CARE No
Does patient
have Yes
 Please contact the specialist palliative care team for additional advice and support, if PATHWAY COMMUNITY specialist
palliative care
required. needs?
 The aim of this document is to support the patient’s health needs alongside their spiritual,
social and psychological ones.
Refer to Specialist
Ongoing visits (minimum daily) by DN/community Palliative Care (SPC) for
nurse to provide holistic nursing care according to assessment +/-
ONGOING ASSESSMENT COMFORT CARE – PART 2 management in
the care pathway document
This pathway was developed with support from Pan Birmingham Palliative Care Network partnership with primary
The ongoing assessment should be undertaken by the multidisciplinary team when the decision
is taken to commence the patient on the pathway Refer to appropriate services to provide additional care team
© West Midlands Strategic Health Authority 2006. SCP COMMUNITY version 1 2008 SCP sheet 1 supportive care at home to work in partnership
Date of commencement upon pathway with DN/community nursing team
Patient Name: Address:
Patient ID/NHS number:
DN/community nursing continuation of care
following patient death: including information on
Tel:
what to do following death, bereavement
contact/visit within 1 week
© West Midlands Strategic Health Authority 2006. SCP COMMUNITY version 1 2008 SCP sheet 1
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5. 7. Care after death
Outcomes from Project
• SCP part 3 – care after death
• Carer information and
SUPPORTIVE CARE PATHWAY COMMUNITY
CARE AFTER A DEATH
• COPD patients on GSF increased to 12% but then
support reduced to baseline owing to deaths
• Bereavement visit following THE SUPPORTIVE CARE • 29% of patients dying at home (including care homes)
PATHWAY COMMUNITY
patient death PART 3 in 2010/11 to 39% in 2011/12
CARE AFTER AN EXPECTED DEATH
• 71% of patients died in hospital in 2010/11 reducing
to 59% in 2011/12
This pathway documentation includes:
• All surgeries and Community Nursing using “My Life”
booklet enabling ACP discussions
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
© West Midlands Strategic Health Authority 2006
SCT(C)098v2/2011 – Solihull Care Trust Supportive Care Pathway for Adults PART 3
SCP sheet 1
• Increased partnership working between MDT
Replaces Ref No: SCT(C)097v1/2008
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6. Outcomes cont Objectives of the EOLC Project
• Training needs identified – particularly within the • Increase number of patients supported in community
hospices on Supportive Care Pathway
• Patient & Carer survey revealed
– 76% very satisfied with opportunity to discuss what • Improve coordination of care and reduce duplication
is important to them & coping with illness
– 84% very satisfied with involvement in discussion • Improve communication and information sharing
– 76% very satisfied with information on future care across services
– 90% very satisfied with overall experience
• Community EOLC project • Define the role of the District Nurse in EOLC
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7. Workshops and Process Mapping EOLC Workshops Current State Map
• 2 workshops and 1 meeting held with leads and senior N o 1.
PATIENT
IDENTIFIED AS EOL
No 2. No 3.
clinicians from all services involved in EOLC REFERRED INTO E.O.L.
PATHWAY
PATIENT
IS
ASSESSED
CARE PLAN
DEVELOPED
• Workshop 1 Oct 2011: Spa CLN/CHC
No 1 - Identify Patient and Referrals
VW Heart Failure
COPD (Resp
Team)
District Nurses Macmillan Spa CLN/CHC VW
No 2 - Assessment
Heart Failure
COPD (Resp
Team)
District Nurses Macmillan Spa CLN/CHC
No 3 - Care Plan Development
VW Heart Failure
COPD (Resp
Team)
District Nurses Macmillan
– Process mapping for all services
Referrals to service by Patient Referred from Referrals to the service M.O.T.s with consultants Identify Patient in last 6- Monthly GSF to identify Referrals received by fax
Assessment to identify CHC assessment Full assessment including Key worker / Co- TPP - Paper records Base line care plan to Write care plan Care plan developed Annual teaching to Plan rescue medication Lack of available care Use specialist palliative
others. All referrals acute service via NHS by GP; Resp Team; Heart to identify EOL patients 12 months of life and where on the register on Pan B'Ham network
need - Care delivered by undertaken and psychological, social Ordinator Who ?? - As reviewed at SPC MDT 1 enable safe delivery of summary for providers over 2-3 visits, community staff and O2 therapy and plans and printers not care if D/N stated in
accepted & actioned. CHC checklist (CLN) failure communicate to GP for "RAC" Specialist Palliative Care
support workers discharge planned with carried out by matrons appears to be District week after referral. care by support worker and risk assessment. management plan night nurse if needed working care plan.
GSF and District Nurses pathway referral form.
for Supportive Care Multi-disciplinary team, for all referred patients. Nurses! Providers then write agreed with
– List of ‘snags’
Pathway family and patient - plus own care plan (CHC) patient/carer
Equipment and
Referral from specialist 10% patients referred Adhoc attendance at GSF Joint Clinics to Referrals received from Referrals from
environment.(CLN) Qualified staff view Epex all assessments On assessment full care Telephone support to Patients have self Full care plan part one Some of team will
palliative care nurse in onto District Nurses. meetings to feedback consultant In-Reach Hospital, Specialist Consultants, specialist
supportive care and contacts(CHC) plan left in house. GP's and district nurses management plan initiate supportive care
acute hospital (CLN) condition of patient onto Wards - Services, Virtual Wards nurses, GPS, District Complete full assessment Not all members of staff Refer to Hospice at Blue Bed Assess DLA/AA
Identification of EOL and GP's. Some via Nurses, Care Homes,
pathway but do not Contact telephone pathway.
and present to panel for confident to have Home / Spa or CHC + DS1000
patients. phone, face to face, No Patient carerer, Self complete numbers left with
outcome decision - need difficult conversations depending on condition.
Referral forms or very Referral followed up patient/carer
to be passed back to about Place of Death and
little information. with GP
Social services. Currently Do Not Resuscitate. Care agencies write Provide rescue Annual training to Find out what they Specialist palliative care
Inappropriate Fast Track Patients identified are Refer patient to Attend GSF meetings if Phone Macmillan to see
Not Being done within their own care plans- do medication plan to community staff know and what they templates on TPP
referrals (CHC) often difficult to refer Macmillan/Palliative able. if they are aware of the
time scales(CHC) not always have skills patient want, what family
onto District Nursing. care team if other patient.
• Workshop 2 Nov 2011:
conditions require input. and expertise support they have
Fast Track Referrals Result of assessment Contact patient and Assess within 2/5/10
Referral comes from Difficulty in joint working Identify and Referral raised on Epex, assess within 48 hrs. to referrals made to other conduct introduction to days depending upon Care plan and risk Joint visits with district Telephone support for Supportive care My life booklet offered
multiple sources for full when working with Non- communicate to GP's the However not all patients support with "POC"? agencies e.g.. DN's service and start care patient need. assessments forwarded nurses to support care DN's/GP's pathway, education re to patients to support
assessment and Fast Cancer patients need for patients to go are put onto the register Identify Provider.(CHC) plan. to care agency (CLN) plans documentation for all information
Track (CHC) onto the GSF by all staff. services as process not
Referrals from Spa to All assessment Ask patient families Assess first by telephone used by all services
– Agreed priorities
Referrals from Hospital About 60% +- patients Open palliative care support with night sits, documents put onto concerns worries fears and agree time and date
If plan is to go home, District nurse to Care pathway
Discharge. identified as not Register involves outside agencies Epex request and documents. for the 1st visit
multidisciplinary team complete Gold Standard document not on care
currently on the GSF or - note unable to use their
SCP
meeting arranged, liaise Framework part 1 for plan print run for
paperwork
Spa for Agency Discuss in Hand over with D/N, develop care care plan community nursing
After individual E-mail sent to West Contact and give contact PC assessment including :- plan with patient and
– Concerns, causes and countermeasures
Management meeting
assessment liaise with Midlands Ambulance numbers as may not Physical, Psychological, family (CLN)
the appropriate others - Service and Badger want a visit - record spiritual and social
District Nursing to 3 monthly GSF meetings
DN;s , OT,s , Physio, informing them of detail on Epex. Referrals from Supportive care
provided packages under with GP where diagnosis
Marie Curie patient on the Virtual Heartlands for CHC do pathway implemented
fast track. and prognosis is
discussed
Ward - On some not provide care plans and put in patients
– Vision statements
CHC referral- On Marie Curie, Nurse occasions Do Not or risk assessment (CHC) home
assessment identified as Specialists Links and resuscitate status is sent
EOL care. Contacts to them.
Marie Curie Nurse Sign posting on Assessment - lack of CHC community unable
Specialist Monthly assessment Difficult to communication between to use plans and risk
Meeting predict time of death services resulting in assessments written by
No GSF meetings at because of their long repeat questions for SPA whey they refer to
some surgeries term condition. patients. CHC
Enter onto Epex - Input
errors would be
On assessment referral Make initial contact with
eradicated if the input
• Meeting Dec 2011:
to team social worker, patient and family to
fields were mandatory.
Initial referral to all team Physio and team discuss plan of care.
services or just to pharmacist.
immediate service
50% of Nurses failing to
input information.
– Agreed action plan
Communication, Lack of
electronic records to link
all services - on-going
through all EOL.
Productive Community Services
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8. Developing step by step guidance
Solihull Community Services End of Life Care Dependency Tool using GSF Status What do we want the reality to be?
Identification of
patients with
Months / year
prognosis - stable
Weeks /months
prognosis -
Days / weeks
prognosis - dying
Care after death
• Needs based care
EOLC needs sliding
Use of GSF ‘Surprise Named DN for patient Minimum 2 weekly DN Minimum daily Verification of death
• Choice – preferred place of care
Question’ and responsible for case review and support DN/community completed and
Prognostic Indicator management using Supportive Care nursing support & appropriate services
Guidance – including Pathway PART 1 case management notified
patients with non
cancer diagnosis
Minimum monthly
review and support
from DN
Review ACP and
preferred place of care
using Supportive Care
Pathway PART 2 Carer information on
registering a death
• Reliable care
Community Nurses, Review ACP, preferred and bereavement
Community Matrons, Care plan and DNACPR if place of death & support
Respiratory and Heart Supportive Care appropriate & notify DNACPR status
Failure teams
identifying patients
Pathway PART 1
commenced by DN
WMAS if DNACPR in
place Refer & liaise with
Carer bereavement
needs assessed and • Dignity
appropriate support referral for support if
Identification from MY LIFE booklet - ACP Refer & liaise with services - Marie Curie appropriate
discharge letters discussions offered, appropriate support Nursing or SPA
outcomes recorded services - Marie Curie Hospice at Home (see Reflection and
Liaising with GP when
patients identified for Refer & liaise with
Nursing or SPA
Hospice at Home (see
flow chart) learning reviewed at
next caseload review
• Carers supported
the GSF register appropriate support flow chart) OOHs updated and meeting
services WMAS
OOHs updated Complete discharge
OOHs notified
Carer’s needs
Review carer’s needs
Review carer’s needs
Update Complete
screen on SystmOne
indicating place of
death
• Staff supported
assessment Update Complete SystmOne templates -
SystmOne templates - GSF, ACP and care Audit patient
Complete SystmOne GSF, ACP and care pathway outcomes in EOLC
templates - GSF, ACP
and care pathway
pathway
• Consistent, sustained, reliable services
Referral to Specialist Palliative Care for patients with complex palliative care needs DRAFT April 2012
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9. Conclusions
Thank You
• 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
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