breakout 4.4 end of life care in respiratory disease ~ what we did in solihull sandy walmsley, helen...
DESCRIPTION
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 programmeTRANSCRIPT
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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