Care homes and end of life care

A care home 'is' someone's home, one day it could be yours too … best practice in end of life care in care homes. Presentation from Eleanor Sherwen, Elaine Owen and Caroline Flynn from England's National End of Life Care Programme as part of the Department of Health's QIPP end of life care workstream seminar series at Healthcare Innovation Expo 2011

1. Care Homes
A care home 'is' someone's home, one day it could be
yours too …

2. A care home 'is' someone's
home, one day it could be yours
too …

3. Living well and dying well

4. Objectives of the presentation
•Set the context for End of Life Care
•Identify the End of Life Care policy drivers
•Examples of best practice care in care homes
•Demonstrate what people say they want
•Effective engagement with
commissioners/providers
•The Six Steps Programme
•Video
•Key messages

5. Definition of End of Life Care
End of life care is simply acknowledged
to be the provision of supportive and
palliative care in response to the assessed
needs of patient and family during the last
phase of life.
National Council for Palliative Care(2006)

6. What do you think constitutes
good end of life care?
GROUP WORK

7. What people say is important to them
at the end of their life
•Communication -Being listened to
•Respect
•Dignity, respect and compassion
•Seeing me as a person not a disease
•My wishes respected wherever possible- including place
of care
•Remember my family and support network
•My spiritual and religious needs met
•Being symptom free

8. 500,000 people die each year, there is a major discrepancy
between people’s preferences for where they should die and
their actual place of death
•Most when asked, identify that they would probably like to
die at home
•Only around 18% do so with a further 17% in care homes
•Acute hospitals accounting for 58% of all deaths
•Around 4% in hospices
Where do people die?

9. End of Life Care Strategy
(DH 2008)
1.The challenges of end of life care
2.Death, dying and society
3.The end of life care pathway
4.Care in different settings
5.Support for carers and families
6.Workforce
7.Measurement and research

10. An ageing population
England : The proportion of the total population aged 65 and over
Source :Office of National Statistics
http://www.statistics.gov.uk/downloads/theme_population/NPP-2006/NPP06_NSOnline.pdf
0
5
10
15
20
25
2006 2010 2020 2030
P
r
o
p
o
r
t
io
n
o
f

a
ll
a
g
e
s

p
o
p
u
la
t
io
n
65-74
75-84
85+

11. The demographic challenge add Graphs Gnomes and Higgingon
Rising expectations – leading to complaints please add references to
NCEPOD and HCC complaints
Political and public demands for best use of resources
The drivers for change
Actual and projected deaths
England Wales
Source : Gomes and Higginson; Where people die (1974–2030): past trends, future
projections and implications for care., Palliative Medicine 2008; 22: 33–41

12. QIPP and the End of Life Care
Strategy
•Taken as a whole, the strategy fits all the QIPP criteria,
from quality to prevention: and implementation carries on
for all the work people have established
•The EoLC QIPP workstream concentrates on the early
part of the pathway: identifying people as they approach
the end of life and then planning their care: if we don’t
get this right the rest of the strategy has no anchor.
•QIPP will help us to accelerate this strand of the work
•In the meantime, we need to ensure that services are in
place to provide the care for patients and their relatives/
carers, in the place of their choice.

13. Key Levers Key Levers
for improved Carefor improved Care
Patient Patient
achieving their achieving their
wishes and wishes and
preferences at preferences at
end of life of end of life of
where they where they
want to die want to die
Reduction in Reduction in
inappropriate inappropriate
hospital hospital
admissions admissions
Equity and Equity and
access to end access to end
of life care of life care

14. What tools are available to
support?

•Gold Standards Framework
•Preferred Priorities of Care
•Liverpool Care Pathway for the dying
Patient
•Blended Education; including e-learning,
Macmillan foundations training, Routes to
Success and Six Step programme

15. Support for Implementation

16. Death, dying and society
lNational Coalition – Dying
Matters
l Over 14,000 members
l First Awareness Week
March 2010-
lSecond planned w/c16 May
2011
l Materials available on
website
www.dyingmatters.org
lwww.dyingmatters.org

18. Examples of best practice:
Education & Training
•Implementing a 6 month support and training
programme in care homes in Avon,
Gloucestershire and Wiltshire NHS South West
•Involved 12 care homes
•Joint training programmes can help to combat
the sense of isolation among many care home
staff
•A combination of education and mentoring can
have a big impact

19. Example of best practice:
Liaison and Support to care homes
A scheme to support and advise care home staff
in Warrington has cut hospital admissions and
given residents greater choice about where they
die.
Between April 2009 and March 2010, the number
of A&E attendances from care homes in
Warrington has dropped by 250, emergency
admissions have fallen by 288 and a total of
8,836 hospital bed days have been saved.

20. Example of best practice:
LCP in care homes
•Northamptonshire NHS Provider Services have
developed a step approach to LCP
implementation in care homes
•The process involves training beforehand,
ongoing support once the LCP is being used and
participation in the LCP Reflective Data Cycle
•Seventy per cent of those who died in care
homes registered with the project had their care
guided by the LCP.

21. Examples of best practice:
Enabling individuals to remain in
their home
•Improved liaison with primary care trust services is
enabling patients with Huntington’s disease in Strood,
Kent to remain in care homes (personal care) until they
die
•Regular meetings held with dieticians, speech and
language therapists, Palliative care critical nurse
specialists.
•Regular patient reviews with GPs and palliative medical
consultants

22. “ It should not be down to ’luck’ and where
we live in the country as to how we die, we
all know death happens and we should be
more prepared, human and caring”
Comment posted on the Patient Opinion
website www.patientopinion.org.uk

23. How do we ensure there is effective
engagement between commissioners,
care home providers?
GROUP WORK

24. How will the resident &
family/commissioner/care home
know it has worked
•Residents receive their wishes and preferences at end of
life
•Family feel supported
•Use of Liverpool Care pathway/Six Steps to Success
programme demonstrates quality care given
•Staff are trained and competent to deliver the care
•Fewer complaints
•Reduction in inappropriate hospital admissions
•Equity and equal access to quality end of life care to all

26. CQC
End of Life Care Quality Markers
For Care Homes
•Action Plan for EOL
•Mechanisms to discuss, record wishes (ACP)
•Residents needs assessed and reviewed
•Nominate a key worker for each resident at EOL
•Residents who are dying are entered onto a care pathway
•Families and Carers are involved in decisions at EOL to the extent they
wish
•Other Residents are supported following a death
•Quality of EOL care is audited and reviewed
•Process to identify training needs of all workers, common requirements –
communication skills, assessment and care planning, ACP and symptom
management
•Training needs addressed for those staff initiating ACP
•Aware and encourage attendance to EOL care training
•Review all transfers in and out of the care home at EOL
CQC (2010) End of Life Care
Prompts Care Homes: Guidance
for Inspectors
How should a care home that provides end of life care support the person?
CQC questions to consider…
•Do staff have knowledge & skills to identify EoLC needs. A relevant care assessment is in
place
•Systems in place to access relevant members of PHCT
•Needs assessment reviewing, pain, tissue viability, nutritional needs etc
•Are residents and loved ones included in the decision making process.
•Are residents given the opportunity to discuss PPC
•Is there a policy & training for staff with clear records if a DNAR is recorded
•Do the staff use a pain chart
•Do documents used support end of life planning e.g. LCP
•The least possible disruption to the individual and their familyand those close to them
•(see CQC Guidance for inspectors)

27. Discussions as
end of life
approaches
Discussions as
end of life
approaches
Assessment, care
planning and
review
Assessment, care
planning and
review
Delivery of high
quality services
Delivery of high
quality services
Care in the last
days of life
Care in the last
days of life
•Strategic
coordination
•Coordination of
individual patient
care
•Rapid response
services
•Identification of the
dying phase
•Review of needs
and preferences
for place of death
•Support for both
patient and carer
•Recognition of
wishes regarding
resuscitation and
organ donation
•Recognition that
end of life care
does not stop at
the point of death.
•Timely verification
and certification of
death or referral to
coroner
•Care and support
of carer and
family, including
emotional and
practical
bereavement
support
Care after deathCare after death
Coordination of
care
Coordination of
care
•High quality care
provision in all
settings
•Hospitals,
community, care
homes, hospices,
community
hospitals, prisons,
secure hospitals
and hostels
•Ambulance
services
•Agreed care plan
and regular review
of needs and
preferences
•Assessing needs of
carers
Support for carers and families
Information for patients and carers
Spiritual care services
The End of Life Care Pathway
Step 1 Step 2 Step 3 Step 6Step 5Step 4
•Open, honest
communication
•Identifying triggers
for discussion

28. Why?
•Fits with the End of Life Care Strategy identifying the
need for a cultural shift in attitude & behaviour across the
health & social care workforce towards end of life care
•10% reduction in inappropriate hospital deaths ( North
West Healthier Horizons 2008)
•Provide stronger partnerships between the NHS and the
independent care sector
•Address the key components of End of Life Care
education to support care homes in providing end of life
care i.e. Advance Care Planning, communication skills &
Liverpool Care Pathway
• Improving equity of quality end of life care for all
residents in a care home.
•Delivery of quality end of life care in care homes requires
an effective balance of external support and internal
resources.

29. QIPP
Quality
•Improve the resident and family experience of end of life
care in a care home setting
•Enhance care delivery within the care home at end of life
•A skilled workforce
Innovation
•A low cost Network EOL programme providing a consistent
approach across PCT’s with a wide access to all care homes
•Can support care homes who currently have high recorded
admissions to the acute sector for end of life care
•Develop a care home representative to take responsibility
for the future development of end of life care provision in
their care home
Productivity
•Enhanced end of life care
•Enhanced MDT working
•Deliver choice at end of life
•Wider awareness and implementation of End of life care
•Development of PCT End of Life Care home representative
Groups
•Address equity
Prevention
•Reduction in hospital admissions at end of life from Care
homes
•Reduction of isolated working

30. The Future
‘more work is needed to enable integration of
nursing homes into the wider systems of end of
life care and to enable collaboration across
organizational, institutional and funding
boundaries so that patients receive a better
quality of end of life care regardless of the care
setting in which they are located’.
Jane E Seymour, Arun Kumar and Katherine Froggatt
(2009)

31. My Home Life Video
Supporting good end of life care video
Reference:
www.myhomelife.co.uk

32. “You matter because you are you.
You matter to the last moment of your life
and we will do all we can, not only to
help you die peacefully, but to live
until you die.”
Dame Cicely Saunders

33. References
•www.endoflifecareforadults.nhs.uk
•www.dyingmatters.org.uk
•www.goldstandardsframework.nhs.uk
•www.patientopinion.org.uk
•www.mcpcil.org.uk

34. Contact us:
Website www.endoflifecareforadults.nhs.u
Email [email protected]
Telephone [phone]
National End of Life Care Intelligence
Network
www.endoflifecare-intelligence.org.uk