End of Life care - National Homecare Council

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Introduction to the Gold Standards Framework
Domiciliary Care Training Programme
Maggie Stobbart-Rowlands, Lead Nurse, GSF Central Team
“Its about living well until you die”
Our aspiration is to deliver training and support
that brings about individual and organisational
transformation, enabling a ‘gold standard’ of
care for all people nearing the end of life .
End of Life care
is everybody’s business
Do any of the people
you care for
ever die?
Then you
need to think about
end of life care.
Clarification of Terms
•
End of Life care
• ‘Care that helps all those with advanced progressive incurable illness
well as possible until they die’
to live as
•
Supportive Care
• Helping the patient and family cope better with their illness
•
Palliative care
• specialist / palliative care -holistic care (physical psychological, social, spiritual )
•
Final days/Terminal care
•
Diagnosing dying-care in last hours and days of life
End of Life
Care
Supportive
Care
Palliative
Care
Final days/ Death
Terminal Care
End of Life Care in Numbers
• 1% of the population dies each year
• 17% increase in deaths from 2012
• 60-70% people do not die where they choose
• 35% home death rate – 18% home, 17% care home
• 40% of deaths in hospital could have occurred elsewhere
• 75% non-cancer ,85% of deaths occur in people over 65
• £19k non cancer ,£14k cancer - av.cost/pt/final year
.
Hospice and Specialist
Palliative Care
1) Specialists
2) Generalists - GSF
Workforce 5,500
Enabling Generalists
• Primary Care
• Care Homes
• Hospital
• Domiciliary care
Workforce -2.5 m
3) Lay People- general public
• Public Awareness
• Community Care
• Carers Support etc
• Population 60m
The key role of
generalist frontline carers
‘Its less about what you know…
…its more about what you do and how you do it’
• Identifying important triggers - being aware of patients
nearing end of life
• Assessing needs and wishes
• Planning care - Knowing when and where to get help Playing role in system – cross boundary care
• Communicating well-Sharing information
What is
The Gold Standards Framework?
Enabling generalists in
end of life care
Frameworks to deliver a
‘gold standard’ of care
for all people nearing
the end of life
“Every organisation involved in providing end of life
care will be expected to adopt a coordination process ,
such as the GSF”
DH End of Life Care Strategy July 08
Aim of GSF
• Aim is to develop an
organisational -based
system to improve the
organisation and quality of
care of service users in the
last year/s of life in the
community.
What does GSF aim to do?
3 Key messages
1. 
Improve quality of care
2. 
Decrease hospitalisation and cost
3. 
Improve cross boundary
teamwork + collaboration
GSF is about …
• Enabling Generalists - improving confidence of staff
• Person- led -focus on meeting person and carer needs
• Care for all people -non-cancer, frail
• Pre-planning care in the final year of life -proactive care
• Organisational system change
• Cross boundary care- home ,care home, hospital,
hospice, Care closer to home – decrease hospitalisation
Improve organisation of care
Head Hands and Heart
HANDS
HEAD
- knowledge
- organisation
- clinical competence
- systems
- ‘what to do’
- ‘how to do it’
HEART
-compassionate care
-experience of care ’why’
- human dimension-
-GSF
GSF Training Programmes
• GSF Primary Care
–
–
–
–
From 2000- foundation GSF mainstreamed (QOF)
90% GP practices have palliative care register and meeting
June 09 Next Stage GSF launched updated GSF
New training programme + quality recognition
• GSF Care Homes
– From 2004 -Over 1500 care homes trained
– Developed training and accreditation programmes
– 100 / year accredited
• GSF Acute Hospitals
– From 2008 -Phase 1 pilot 15 hospitals
– Phase 2 Spring 2011
– Improving cross boundary care
GSF Domiciliary Care
– From 2011 –phase 1 –Manchester, Birmingham, Rotherham
– 8-10 domiciliary care agencies, 80-100 carers per agency
Deliver coordinated care
in line with preferences
Three key bottlenecks
that GSF helps with
• Identification of all patients
particularly those with non cancer
• Difficult conversations with patients and families,
advance care planning discussions
• Effective team pre-planningpredicting needs- change to more proactive care
GSF 3 Steps
identify
patients who may be in the last year of life and identify their stage
(‘Surprise’ Question + Prognostic Indicator Guidance + Needs Based Coding)
assess
current and future, clinical and personal needs
(using assessment tools, passport information, patient & family conversations, Advance Care Planning conversations)
plan
Plan cross boundary care and care in final days
(Use Needs Support Matrix, GSF Care Plan/Liverpool Care Pathway and Discharge Information/Rapid Discharge Plan)
G o ld S ta n d a rd s F ra m e w o rk a n d th e S u p p o rtive C a re P a th w a y D ra ft 7
T h in k in g A h e a d - A d va n c e C a re P la n n in g
GSF
Toolkit
G o ld S ta n d a rd s F ra m e w o rk A d va n c e S ta te m e n t o f W is h e s
T h e a im o f A d va n ce C a re P la n n in g is to d e ve lo p b e tte r co m m u n ica tio n a n d re co rd in g o f
p a tie n t w ish e s. T h is sh o u ld su p p o rt p la n n in g a n d p ro visio n o f ca re b a se d o n th e n e e d s a n d
p re fe re n ce s o f p a tie n ts a n d th e ir ca re rs. T h is A d va n ce S ta te m e n t o f w ish e s sh o u ld b e u se d
a s a g u id e , to re co rd w h a t th e p a tie n t D O E S W IS H to h a p p e n , to in fo rm p la n n in g o f ca re .
T h is is d iffe re n t to a le g a lly b in d in g re fu sa l o f sp e cific tre a tm e n ts, o r w h a t a p a tie n t D O E S
N O T w is h to h a p p e n , a s in a n A d va n ce d D e cisio n o r L ivin g W ill.
Id e a lly th e p ro ce ss o f A d va n ce C a re P la n n in g sh o u ld in fo rm fu tu re ca re fro m a n e a rly sta g e .
D u e to th e se n sitivity o f so m e o f th e q u e stio n s, so m e p a tie n ts m a y n o t w ish to a n sw e r th e m
a ll, o r to re vie w a n d re co n sid e r th e ir d e cisio n s la te r. T h is is a ‘d yn a m ic’ p la n n in g d o cu m e n t
to b e re vie w e d a s n e e d e d a n d ca n b e in a d d itio n to a n A d va n ce d D e cisio n d o cu m e n t th a t a
p a tie n t m a y h a ve a g re e d .
P a tie n t N a m e :
T ru st D e ta ils:
A d d re ss:
DOB:
H osp / N H S no:
D a te co m p le te d :
N a m e o f fa m ily m e m b e rs in vo lve d in A d va n ce d C a re P la n n in g d iscu ssio n s:
C o n ta ct te l:
N a m e o f h e a lth ca re p ro fe ssio n a l in vo lve d in A d va n ce d C a re P la n n in g d iscu ssio n s:
R o le :
C o n ta ct te l:
T h in k in g a h e a d … .
W h a t e le m e n ts o f ca re a re im p o rta n t to yo u a n d w h a t w o u ld yo u like to h a p p e n ?
W h a t w o u ld yo u N O T w a n t to h a p p e n ?
A C P D ec 0 6 v 1 3
Advance Care Planning –
Thinking Ahead
Prognostic Indicator
Guidance – PIG +
Surprise Questions
Use of templates in
Locality Registers
Passport
Information
Pt needs
Support from
hospital/SPC
Years
Months
Weeks
Days
Needs Support Matrix
After Death Analysis - ADA
Support from GP
GSF 7 C’s
Support
Support from your local trainer/ facilitator
2 whole day Workshops
GSF Resources
• GPG
• Workbook folder
• DVD
2. Needs Based Coding
Identify stage of illness- to deliver the right care
at the right time for the right patient
•
•
•
•
A - All – stable from diagnosis years
B – Unstable, advanced disease months
C – Deteriorating, exacerbations weeks
D - Last days of life pathwaydays
Identify- GSF Prognostic Indicator Guidanceidentifying pts with advanced disease in need of palliative/ supportive care/for
register
Three triggers:
1. Surprise question‘Would you be surprised if this person was
to die within the next year?’
2. Patient preference for comfort
care/need
3. Clinical indicators
Suggested that all pts on register are
offered an ACP discussion
The Gold Standard of
end of life care
“The care of ALL dying patients
is raised to the level of the best.”
(NHS Cancer Plan 2000)
Applications of learning
from cancer pts to the
other 3 out of 4 patients
Goals of GSF
Patients are enabled to
have a ‘good death’
1) symptoms controlled
2) in their preferred place of choice
3) Safe +secure with fewer crises.
4) Carers feel supported, involved,
empowered, and satisfied.
5)Staff confidence, teamwork,
satisfaction, co-working
with specialists and
communication better.
Skills for Care and Skills For Health
Common Core Competences:
Care planning
Symptom control
Advance care planning
Communication Skills
What are the issues you face in providing good
end of life care?
The Challenges in Domiciliary Care
• Isolation/Lone workers
• Communication with others
e.g. GPs, DNs
• Not being valued by other
professionals
• No Pathways or plans for end
of life care
• Lack of collaboration &
identification of people at
the end of life
• Inappropriate admissions at
the end of life
• Confidence of staff
Key Challenge
Lone Workers
Valued
Consistency of carers
Collaboration GP/DN
GSF in Domiciliary
Care
Key Question
What is the importance of
End of Life care, and the
role of the Domiciliary care
worker?
Key Topic
Context of End of
Life Care, GSF
Training
Programme, and
next steps
Communication
Lack of structure
Understanding what to
do
People admitted to
hospital in the last
stages of life
Are we identifying the
people in the last year or
so of life?
Identify – Needs
Based Coding
Are we providing the right
care for people with life
limiting conditions
Assess– clinical
needs
Do we know about
people’s ‘personal
preferences’
Lack of planning
Lack of consistency
Communication –
GPs/DNs
Lack of information re
condition
Are we supporting people
at the end of life?
Are we working together
as a team?
Assess –
personal needs
Plan 1 Care in the
final days
Plan 2 Cross
Boundary Care
How GSF addresses these
challenges
Session 1
Session 2
Session 3
Context of end of life care
and the role of the carer
within the extended team
Identify people nearing the
end of life
Assess – Clinical
understanding of what to
do
• Session 4
• Session 5
• Session 6
Assess – Personal
preferences
Plan- care in the final
days of life
Plan – Cross Boundary
Care
Reactive patient journeyMR B in last months of life• GP and DN ad hoc arrangements-no PPOD discussed
or anticipated/no anticipatory care
• Problems with symptom control-high anxiety
• Crisis call e.g. OOH-no plan or drugs available
• Admitted to hospital (?Bed blocks?)
• Dies in hospital -?over intervention/medicalised
• Carer given minimal support in grief
• No reflection/improvements by team/PCT
• ? Inappropriate use of hospital bed?
GSF Proactive pt journey-
Mrs W in last mths of life
•
•
•
•
•
•
•
•
•
•
On SC Register-discussed at PHCT meeting
DS1500 and info given to pt +carer(home pack)
Home care team involved in planning & delivery
Regular support, visits phone calls-proactive
Assessment of symptoms-?referral to SPC-customised care to pt
and carer needs
Carer assessed including psychosocial needs
Preferred place of care noted and organised
Handover form issued –drugs issued for home
End of Life pathway/LCP/protocol used
Pt dies in preferred place-bereavement support Staff reflect-SEA,
audit gaps improve care, learn
Better team-working and collaboration
with GPs and others
• Talking a common language (incl coding)
• Earlier prediction of needs
• Advance Care Planning helps focus on personal goals
of care
• Better agreed documentation eg DNAR
• Preparation eg anticipatory prescribing, LCP
• Better morale and mutual confidence
Benefits to Patients of Cross Boundary GSF
better access
to GPs and
nurses
easier
prescriptions
prioritised
support for
patient and
carers
ACP & DNAR
noted and
recognised
care homes staff
speak to hospital
staff daily updating
always get a
visit on
request
Primary
Care
coding
collaboration
flagged up as
prioritised
care
proactive
planning of
respite
advance care
plan –
preferred
place of care
documented
Out of
Hours
GSF
Patients
Care
Home
passed on to
doctor to
phone back
within 20 mins
visit more
likely if
needed
GSF patient flagged
on system
Hospital
collaboration
with GP and
GSF register
? open visiting
referral letter
recommends discharge
back home quickly
car park free?
noted on readmission
to hospital and STOP
THINK policy and ACP
Reduce hospitalisation
1.
Admissions avoidance policy
2.
Reduced length of staycommunication with hospitals –
discharge - better turnaround
3.
Appropriate admissions criteria
4.
Reflective practice as a team
5.
Proactive care- coding, communication, ACP, drugs,
team planning, training etc
better
rapid
GSFDC Training Programme
GSF for Domiciliary Care Teams
Assessment After
Assessment Before
Session 1 Training Event
6 Learning Sessions
Session 6 Training & Feedback
Planning
Its about living well until you die
www.goldstandardsframework.org.uk
info@gsfcentre.co.uk
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