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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.

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Presentation on theme: "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."— Presentation transcript:

1 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 Christophers Hospice, London

2 Nursing and residential care places for elderly, chronically ill and physically disabled by sector, UK, April 1967-2000 (Laing & Buisson, 2002)

3 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

4 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

5 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 persons 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


7 Staff & residents in an older people's care home in London. Photograph: Frank Baron care

8 Residents are becoming increasingly frail oThey have multiple medical pathologies oSurvey across all BUPA Care Homes (Bowman et al 2004) o41% had 2 or more diagnoses o27% were confused, incontinent & immobile The majority of residents admitted to nursing care homes will die within 2years (Katz & Peace 2004; Hockley 2006)

9 Care Homes for Older People in the UK Care Homes = collective for both nursing & residential homes from private, LA & voluntary sector* Care Homes England18,305 Wales 1,186 Scotland 942 N.Ireland 448 ____________________ TOTAL:20,881 care homes/UK * (accessed Nov 2009)

10 Care Homes oThere are 3 times as many beds in care homes as in the NHS oIn England @ 80,000 people each year die in care homes o18% UK deaths occur in care homes oMajority 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)

11 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 Parkinsons 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, Parkinsons disease] (15%) Sudden death (9%)

12 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

13 Care Home Project & Research Team St Christophers 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

14 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

15 Lack of appropriate facilitation in such a weak context is likely to discredit the end-of-life care tools + sustainability will be patchy

16 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

17 Reflective de-briefing sessions (Hockley 2006) Brief résumé/pen portrait of person who has died and their family What happened? Description of peoples 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?

18 FamilyResidentsStaff Pneumonia as the old mans 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 processShock / Guilt – immunity to buzzers Resident & family as the unit of care Dying & constipationTelling 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 & dyingOOHs pharmacyResuscitation! Knowing medical background Pain v. anxiety – use of anxiolytics…terminal restlessness Striving to keep alive culture v. PCA

19 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

20 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 Maria oHill House oWestside oAmberley COMMENDED: oAcacia Lodge oBarrington Lodge oJames Terry oPurley View oTudor oWhitgift oWoodcote Grove PASS oOban oSt Johns PREPARING FOR ACCREDITATION - January 2012 oGibsons… oHayes Court… oWoodlands… oSunrise… oHeatherwood. oAlbany… oElmwood oRed Court oThackery oParkview UNDERGOING CURRENT PROGRAMME: Lakeside Clarendon NEW PROGRAMME TO COMMENCE: Little Hayes Croham Place

21 MONTHLY Demographic DATA on ALL nursing care home residents who died from Sept 2010 – Aug 2011 Nursing Care Home Code: ……………………………….. F/MF/M DOBDOB DOADOA DODDOD Time in NH ALL diagnoses Doc. evidence of DNaCPR Yes/No Doc. evidence of ACP Yes/No LCP or Minimum Protocol: Yes/No Place of death: NH, hospice or hospital Comments re death + type of death: D, S, A, T [1 ] [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

22 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



25 Comparison of data on deaths in nursing homes across 5 PCTs – 2007 to 2010 2007/20082008/20092009/2010 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 TOTALS 57% 184 / 324 deaths across 19 NHs 67% 663 /989 deaths across 52 NHs 72% 769/1071 deaths across 53 NHs

26 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)

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