The Complexities of Care: ensuring excellence in end of life care Education

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The Complexities of Care ensuring excellence in
end of life careEducation a vision for
nursing homes

• Jo Hockley RGN PhD MSc SCM
• Nurse Consultant
• St Christophers Hospice, London

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

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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

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Policy changes in the care of older people (iii)

• Recommendations from RCP/RCN/BGS (20008) 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

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Staff residents in an older people's care home
in London. Photograph Frank Baron
http//www.guardian.co.uk/society/2009/jul/08/resi
dential-homes-older-people-care
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• Residents are becoming increasingly frail
• They have multiple medical pathologies
• Survey across all BUPA Care Homes (Bowman et al
  2004)
• 41 had 2 or more diagnoses
• 27 were confused, incontinent immobile
• The majority of residents admitted to nursing
  care homes will die within 2years (Katz Peace
  2004 Hockley 2006)

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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)

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Care Homes

• There are 3 times as many beds in care homes as
  in the NHS
• In England _at_ 80,000 people each year die in care
  homes
• 18 UK deaths occur in care homes
• Majority die in nursing care homes (Tebbit 2008)
• 9.5 deaths in nursing care homes (4,300 NHs)
• 6.7 deaths in residential care homes (14,000RHs)

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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)

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• 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

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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

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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

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

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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

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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?

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Family Residents Staff
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 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 anxiolyticsterminal restlessness Striving to keep alive culture v. PCA
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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

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27 NURSING HOMES CROYDON GSFCH Programme 27 NURSING HOMES CROYDON GSFCH Programme 27 NURSING HOMES CROYDON GSFCH Programme 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 Villa Maria Hill House Westside Amberley COMMENDED Acacia Lodge Barrington Lodge James Terry Purley View Tudor Whitgift Woodcote Grove PASS Oban St Johns PREPARING FOR ACCREDITATION - January 2012 Gibsons Hayes Court Woodlands Sunrise Heatherwood. Albany Elmwood Red Court Thackery Parkview UNDERGOING CURRENT PROGRAMME Lakeside Clarendon NEW PROGRAMME TO COMMENCE Little Hayes Croham Place
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MONTHLY Demographic DATA on ALL nursing care home
residents who died from Sept 2010 Aug
2011 Nursing Care Home Code ..
F/M DO 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 Place of death NH , hospice or hospital Comments re death type of death D, S, A, T1





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

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Place of death for residents in NCHs Pre
GSFCH 2007-2008 8 NCHs Post
GSFCH 2009-2010 23 NCHs
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Comparison of data on deaths in nursing homes across 5 PCTs 2007 to 2010 Comparison of data on deaths in nursing homes across 5 PCTs 2007 to 2010 Comparison of data on deaths in nursing homes across 5 PCTs 2007 to 2010 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
TOTALS 57 184 / 324 deaths across 19 NHs 67 663 /989 deaths across 52 NHs 72 769/1071 deaths across 53 NHs
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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)