The Complexities of Care:
ensuring excellence in end of life
care
Education – a vision for nursing
homes
Jo Hockley RGN PhD MSc SCM
Nurse Consultant
St Christopher’s Hospice, London
Nursing and residential care places for elderly, chronically ill
and physically disabled by sector, UK, April 1967-2000
(Laing & Buisson, 2002)
Policy changes in the care of older people (i)
Considerable change in CH context as a
result of government policies:
NHS and Community Care Act of 1990:
Closure of long-stay geriatric wards in favour of
care being given in the community - monies given
to private sector via social services
Little realistic provision of medical care
Policy changes in the care of older people (ii)
Care Standards Act in 2000:
All homes for older people now called CARE
HOMES
Residential Homes = CARE HOMES (providing
personal care)
Nursing Home = CARE HOME (providing both
nursing care & personal care)
Danger of lack of a balanced health/social
care collaboration in the policy
Policy changes in the care of older people (iii)
Recommendations from RCP/RCN/BGS
(2000:8) setting out aims of heath & care of
older people in care homes suggested:
A rehabilitative philosophy of enablement should underpin
all care if an older person’s potential is to be
maximised.’
In this document ‘death/dying’ was never mentioned
The National Service Framework for Older People
(2001) makes reference to palliative care
Staff & residents in an older people's care home in London.
Photograph: Frank Baron
http://www.guardian.co.uk/society/2009/jul/08/residential-homes-older-peoplecare
Residents are becoming increasingly frail
o They have multiple medical pathologies
o Survey across all BUPA Care Homes (Bowman et
al 2004)
o 41% had 2 or more diagnoses
o 27% were confused, incontinent & immobile
The majority of residents admitted to
nursing care homes will die within 2years
(Katz & Peace 2004; Hockley 2006)
Care Homes for Older People in the UK
Care Homes = collective for both nursing & residential
homes from private, LA & voluntary sector*
Care Homes
England
18,305
Wales
1,186
Scotland
942
N.Ireland
448
____________________
TOTAL:
20,881 care homes/UK
*www.carehome.co.uk
(accessed Nov 2009)
Care Homes
o There are 3 times as many beds in care homes
as in the NHS
o In England @ 80,000 people each year die in
care homes
o 18% UK deaths occur in care homes
o Majority die in nursing care homes (Tebbit 2008)
o 9.5% deaths in nursing care homes (4,300 NHs)
o 6.7% deaths in residential care homes (14,000RHs)
Challenges of high quality end-of-life
care in care homes (nursing)
1) ‘living-dying continuum’
(Froggatt et al 2007)
 ‘living with’ & ‘dying from’ advanced progressive incurable
disease
 Parkinson’s disease; different kinds of dementia; multiple sclerosis;
Cardio-vascular disease (often undiagnosed)
 Cancer (less than 10%) many cancers remain undiagnosed
 4 sorts of dying make ‘defining dying’ difficult (Katz et al 2003)
 General deterioration of the very old – ‘dwindling’
 Death from an acute episode such as stroke, pneumonia
 Dying from a terminal disease [‘cancer’, Parkinson’s disease] (15%)
 Sudden death (9%)
2) Pervading culture of functional rehabilitation
versus palliative care approach
‘Failure of death’ versus ‘celebration of a life lived’
‘striving to keep alive’ versus ‘allowing natural dying’
3) Isolation & lack of good role models and
training around palliative care
Seen as Cinderella service
Few have continuity of medical support despite frailty &
multiple co-morbidities
Lack of external support from geriatrics & SPC
Cared for by untrained carers
Care Home Project & Research Team
St Christopher’s regional training centre for GSFCH
 Croydon, Bromley, Lewisham, Lambeth & Southwark
 5 FTE (including myself)




Phase
Phase
Phase
Phase
5
6
7
8
–
–
–
–
September ‘08 to March 2010
September ‘09 to March 2011
September ‘10 to March 2012
October ‘11 to March 2013
High Facilitation
 Relative ‘weak’ context of nursing care homes:
 High turnover of staff
 Lack of a learning culture
 Mostly untrained staff
 Lack of m/disciplinary input
 Requires ‘high’ facilitation
 Use of evidence-based tools
 Experienced change agent
 Emphasis on empowerment
 Visits by ‘generalist’ palliative care nurse specialists 2-3 visits a month
 to role model, empower and encourage
 Time for change to occur – intense input + sustainability initiative
Lack of appropriate facilitation in such
a ‘weak’ context is likely to discredit
the end-of-life care tools +
sustainability will be patchy
What is involved?

Implementation of end of life care ‘systems’:






GSFCH supportive/palliative care register to improve
collaboration with primary care team
Advance care planning discussions
Use of DNaCPR documentation
Adapted LCP for Care Homes
Assessment tools for pain, depression, constipation
Valuing of staff

Reflective de-briefing sessions following a death

Supportive, helps build teamwork, educative
Reflective de-briefing sessions
(Hockley 2006)


Brief résumé/pen portrait of person who has died
and their family
What happened?



How did people feel?




Description of people’s actions/involvement
What occurred on different shifts
Exploration of personal/interpersonal feelings
Unexpected expressions of emotions
What was ‘good’ – what was ‘bad’
What does it mean?

What can we learn? How does practice have to
change?
Family
Residents
Staff
Pneumonia as the old
man’s friend
Allowing natural dying Taking responsibility - unexpected but timely recognising dying
death
Family involvement in EoL
decision making
Dying trajectories sudden death
Respite admission &
sudden death
Speaking to relatives about Dying process
EoL care/dying
Shock / Guilt – immunity
to buzzers
Resident & family as the
unit of care
Dying & constipation
Telling other residents –
saying ‘goodbye’
Death as a celebration in
older people
Removal of body from
CH
Sitting with the dying
BBNs over phone / sudden
death
Complex pain control gangrenous pain
Staff communication using the word dying
Dehydration & dying
OOHs pharmacy
Resuscitation! Knowing
medical background
Pain v. anxiety – use of
anxiolytics…terminal
restlessness
‘Striving to keep alive’
culture v. PCA
Sustainability Initiative - Cluster Groups



PCT divided into ‘cluster groups’ of 6-7 nursing
homes in each cluster
NHMs help by taking responsibility of hosting
training
3 levels:



Palliative Care Induction Day for ALL new staff within
6 months of starting
4-day Macmillan Foundations in PC for CHs
Action Learning - NHMs
27 NURSING HOMES – CROYDON – GSFCH Programme
13 GSFCH
ACCREDITED
NURSING HOMES
[Phases 4, 5 & 6]
GSFCH Phase 6:
(Sept 2009 – Sept 2011)
10 NCHs preparing portfolio
for accreditation:
BEACON:
oVilla Maria
oHill House
oWestside
oAmberley
PREPARING FOR
ACCREDITATION - January
2012
COMMENDED:
oAcacia Lodge
oBarrington Lodge
oJames Terry
oPurley View
oTudor
oWhitgift
oWoodcote Grove
PASS
oOban
oSt John’s
oGibsons…
oHayes Court…
oWoodlands…
oSunrise…
oHeatherwood.
oAlbany…
oElmwood
oRed Court
oThackery
oParkview
GSFCH Phase
7:
(Sept 2010 –
Sept 2012)
GSFCH Phase 8:
(Oct 2011 - Sept
2013]
UNDERGOING
CURRENT
PROGRAMME:
NEW
PROGRAMME TO
COMMENCE:
Lakeside
Clarendon
•Little Hayes
•Croham Place
MONTHLY Demographic DATA on ALL nursing care home residents who died from Sept 2010 – Aug 2011
Nursing Care Home Code: ………………………………..
F
/
M
D
O
B
D
O
A
D
O
D
Time
in NH
ALL
diagnoses
Doc.
evidence
of
DNaCPR
Yes/No
Doc.
evidence
of ACP
Yes/No
LCP or
Minimum
Protocol:
Yes/No
D = dwindling – slow deterioration with loss of weight over a matter of
weeks/months;
S = sudden (ie heart attack in dining room; or found dead in bed at night);
A = after ‘acute’ episode – ‘unexpected death’ with deterioration over a few days
(ie extension of stroke; fractured femur);
T = diagnosed terminal condition – cancer, Parkinsons
Place of
death:
NH ,
hospice
or
hospital
Comments
re death +
type of
death:
D, S, A, T[1]
Place of death
for residents in
NCHs
Pre GSFCH:
Place of death - 2007/2008 [n=115 residents
across 8 NCHs]
42%
2007-2008
NH deaths
58%
Hospital deaths
[8 NCHs]
Place of death - 2010/2011
Post GSFCH:
[n = 435 residents across 25 NCHs]
2009-2010
[23 NCHs]
24%
NH deaths
Hospital deaths
76%
Use of DNaCPR documentation
Percentage of DNaCPR
documentation
80
75
69
70
60
Evidence of
DNaCPR
documentation
50
40
31
25
30
20
10
0
2008/2009
2010/2011
No evidence of
DNaCPR
documentation
Percentage of ACP discussions
documented
ACP discussions:
2008/2009 & 2010/2011 compared
80
70
60
50
74
60
Evidence of ACP
40
40
30
20
26
10
0
2008/2009
2010/2011
No evidence of
ACP
Comparison of data on deaths in nursing homes across 5 PCTs – 2007 to 2010
2007/2008
2008/2009
2009/2010
Percentage of deaths
occurring in NHs
Percentage of deaths
occurring in NHs
Percentage of deaths
occurring in NHs
57%
34 /59 deaths – 4 NHs
63%
82 /131 – 7 NHs
62%
72 /117 deaths – 7 NHs
57%
41 / 75 deaths – 3 NHs
59%
121 / 204 deaths – 8 NHs
67%
136 /204 deaths – 8 NHs
Croydon
55%
63 / 115 deaths – 8NHs
66%
248 / 375 deaths – 23 NHs
71%
341 /477 deaths 23 NHs
Bromley
61%
46 / 75 deaths – 4 NHs
76%
212 / 279 deaths – 14 NHs
81%
220 /273 deaths – 15 NHs
57%
184 / 324 deaths across
19 NHs
67%
663 /989 deaths across
52 NHs
72%
769/1071 deaths across
53 NHs
Lewisham
Lambeth
&
Southwark
TOTALS
‘We face a big challenge in end-of-life care
of older people, not because of
demographics, but due to ignorance and
prejudice among practitioners and the
general public, failing to apply evidence to
develop best practice and failing to spread
good practice.’
(Philp, 2003: 153)