the complexities of care: ensuring excellence in end of life care education – a vision for nursing...
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The Complexities of Care:The Complexities of Care: ensuring excellence in end of ensuring excellence in end of
life carelife care
Education – a vision for Education – a vision for nursing homesnursing homes
Jo Hockley RGN PhD MSc SCMNurse 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 Policy changes in the care of older people (i)(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 Policy changes in the care of older people (ii)people (ii)
Care Standards Act in 2000:All homes for older people now called CARE
HOMESResidential 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 Policy changes in the care of older people (iii)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-people-care
Residents are becoming increasingly frailo They have multiple medical pathologies
oSurvey across all BUPA Care Homes (Bowman et al 2004)
o 41% had 2 or more diagnoseso 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 Care Homes for Older People in the UKthe UK
Care Homes = collective for both nursing & residential homes from private, LA & voluntary sector*
Care HomesEngland 18,305Wales 1,186Scotland 942N.Ireland 448____________________TOTAL: 20,881 care
homes/UK
*www.carehome.co.uk(accessed Nov 2009)
Care HomesCare 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 homeso Majority die in nursing care homes (Tebbit 2008)
o9.5% deaths in nursing care homes (4,300 NHs)o6.7% deaths in residential care homes (14,000RHs)
Challenges of high quality end-of-Challenges of high quality end-of-life care in care homes (nursing)life care in care homes (nursing)
1) ‘living-dying continuum’ (Froggatt et al 2007)‘living with’ & ‘dying from’ advanced progressive
incurable diseaseParkinson’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, pneumoniaDying 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 serviceFew have continuity of medical support despite frailty
& multiple co-morbiditiesLack of external support from geriatrics & SPC Cared for by untrained carers
Care Home Project & Research Care Home Project & Research TeamTeam
St Christopher’s regional training centre for GSFCH Croydon, Bromley, Lewisham, Lambeth & Southwark 5 FTE (including myself)
Phase 5 – September ‘08 to March 2010 Phase 6 – September ‘09 to March 2011 Phase 7 – September ‘10 to March 2012 Phase 8 – October ‘11 to March 2013
High Facilitation 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?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 Reflective de-briefing sessions sessions (Hockley 2006)(Hockley 2006)
Brief résumé/pen portrait of person who has died and their family
What happened? Description of people’s actions/involvement What occurred on different shifts
How did people feel? 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 - unexpected but timely death
Taking responsibility - recognising dying
Family involvement in EoL decision making
Dying trajectories - sudden death
Respite admission & sudden death
Speaking to relatives about EoL care/dying
Dying process 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 Sustainability Initiative - Cluster GroupsGroups
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:
GSFCH Phase 7:
(Sept 2010 – Sept 2012)
GSFCH Phase 8: (Oct 2011 - Sept
2013]
BEACON:oVilla MariaoHill HouseoWestsideoAmberley
COMMENDED:oAcacia LodgeoBarrington LodgeoJames TerryoPurley View oTudoroWhitgiftoWoodcote Grove
PASSoObanoSt John’s
PREPARING FOR ACCREDITATION - January
2012
oGibsons…oHayes Court…oWoodlands…oSunrise…oHeatherwood.oAlbany…oElmwoodoRed CourtoThackeryoParkview
UNDERGOING CURRENT PROGRAMME:
LakesideClarendon
NEW PROGRAMME TO COMMENCE:
•Little Hayes•Croham Place
MONTHLY Demographic DATA on ALL nursing care home residents who died from Sept 2010 – Aug 2011Nursing Care Home Code: ………………………………..
F/M
DOB
DOA
DOD
Time in NH
ALL diagnoses
Doc. evidence
of DNaCPR Yes/No
Doc. evidence of ACPYes/No
LCP or Minimum Protocol: Yes/No
Place of death: NH ,
hospiceor
hospital
Comments re death +
type of death:
D, S, A, T[1]
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 - 2007/2008 [n=115 residents across 8 NCHs]
58%
42% NH deaths
Hospital deaths
Place of death for
residents in NCHs
Pre GSFCH:
2007-2008
[8 NCHs]
Post GSFCH:
2009-2010
[23 NCHs]
Place of death - 2010/2011
[n = 435 residents across 25 NCHs]
76%
24%
NH deaths
Hospital deaths
Use of DNaCPR documentation
6975
3125
0
10
20
30
40
50
60
70
80
2008/2009 2010/2011
Per
cen
tag
e o
f D
NaC
PR
d
ocu
men
tati
on Evidence of
DNaCPRdocumentation
No evidence ofDNaCPRdocumentation
ACP discussions: 2008/2009 & 2010/2011 compared
60
74
40
26
0
10
20
30
40
50
60
70
80
2008/2009 2010/2011Per
cen
tag
e o
f A
CP
dis
cuss
ion
s d
ocu
men
ted
Evidence of ACP
No evidence ofACP
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
Lewisham 57% 34 /59 deaths – 4 NHs
63%82 /131 – 7 NHs
62% 72 /117 deaths – 7 NHs
Lambeth & Southwark
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
TOTALS57%
184 / 324 deaths across 19 NHs
67%663 /989 deaths across
52 NHs
72%769/1071 deaths across
53 NHs
‘‘We face a big challenge in end-of-life We face a big challenge in end-of-life care of older people, not because of care of older people, not because of demographics, but due to ignorance demographics, but due to ignorance
and prejudice among practitioners and and prejudice among practitioners and the general public, failing to apply the general public, failing to apply
evidence to develop best practice and evidence to develop best practice and failing to spread good practice.’failing to spread good practice.’
(Philp, 2003: 153)(Philp, 2003: 153)