end of life care for people with advanced dementia - bromley jo hockley rn phd msc scm nurse...
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End of life care for people with advanced dementia - Bromley
Jo Hockley RN PhD MSc SCMNurse Consultant, Care Home Project Team
St Christopher's Hospice
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BROMLEY• Higher than average older population and 2,600 die each year• Higher than average population with dementia mention
dementia as a contributing cause of death– 21% (national average 17.3%)
• Rates of hospital deaths in Bromley are around 56% with 36% of people dying in their own home/care home
• For patients cared for by St Christopher’s and Harris Hospiscare:– 20% in hospital and 55% dying at home/care home– Care home (with nursing) deaths in Bromley have increased by 10%
since St Christopher’s started implementing the Gold Standards Framework.
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Dementia progression: FAST staging• 1 No functional decline • 2 Personal awareness of some functional decline. • 3 Noticeable deficits in demanding job situations. • 4 Requires assistance in complicated tasks eg finances, planning dinner for guests etc
• 5a Cannot recall address, tel no, family members' names etc• 5b Frequently some disorientation to time and place • 5c Cannot do serial 4s from 40, or serial 2s from 20. • 5d Retains many major facts re self • 5e Knows own name • 5f No assistance toileting, eating but may need assistance choosing proper attire
• 6a Difficulty putting clothes on properly without assistance • 6b Unable to bathe properly eg adjusting water temperature. • 6c Inability to handle mechanics of toileting eg forgets to flush, does not wipe properly.
• 6d Urinary incontinence • 6e Faecal incontinence • 7a Speech limited to about 6 words in an average day. • 7b Intelligible vocabulary limited to single word on average day.• 7c Cannot walk without assistance• 7d Cannot sit up without assistance• 7e Unable to smile
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When is end of life reached for the person with dementia ?
Cancer Trajectory
Death
High
LowTime
Function
Death
High
Low
Time
Function
The Dementia Trajectory
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Where do people with dementia die?
Hospital
Old people’s home
Nursing home
Own home
Hospice
Elsewhere
Deaths from Alzheimer’s disease, dementia and senility in England. National End of Life Intelligence Network November 2010
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Hospitalised patients with end-stage dementia receive…
• More inappropriate interventions• Less symptom management • Fewer referrals for specialist palliative care• Less recognition of their spiritual needs• Families are asked to make decisions in times
of crisis (Morrison & Siu 2000; Sampson et al 2006)
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Main symptoms at end of life for someone with dementia
(McCarthy and Addington Hall 1997)
• Pain ( 64% ) • Confusion ( 83% )• Loss of appetite ( 57% ) and/or swallowing difficulties• Low mood ( 61% )• Incontinence- ( 72% ) pressure area risks• Delirium• Terminal agitation• Excess secretions especially if has pneumonia• Constipation
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What are the challenges in EOLC for people with advanced dementia?
Professionals unskilled at symptom assessment where there is little communication from the resident/patient i.e. pain assessment
Poor recognition of dementia as a terminal illness Failure to plan while the person has capacity Difficulty in recognising the dying phase Last minute panic leading to hospitalisation Quality of life? Social and spiritual care?
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An exploration of the palliative care needs of people with dementia & their families –
St Christopher’s Croydon Dementia Project
Dementia team was 1 FTE clinical nurse specialist. 0.2 medical consultantFINDINGS:• 121 patients taken on by the project team• Pain was present in 98/121 patients at referral:
– mainly arthritis, contractures, pressure sores– in all but 6 the pain was easy to control
• Common symptoms:– drowsiness, weakness, anorexia, weight loss, dysphagia.
• Very little advance care planning had been done with families and decisions had not been made about resuscitation prior to involvement by the team
• 89% died in their usual place of residence/home/care home
CONCLUSION:• Neglected group • Most care could be managed by generalist health care providers (GP’s, DNs);
however, not being achieved.
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Looking Ahead
document
..documenting wishes and
preferences in the event of a ‘best interest’ meeting for people with dementia.
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Liverpool Care Pathway
• LCP – m/disciplinary Care Plan• Created to empower the generalist by Prof John
Ellershaw• Goal orientated• Three sections:
– Initial assessment– 4hrly assessments– 12hrly assessments– Care after death
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Liverpool Care Pathways leaflet (St Christopher’s leaflet ‘13)
• What is the Liverpool Care Pathway (LCP)?• Must the LCP be continued once started?• Does the LCP make you give sedatives and other
powerful drugs?• Does the LCP stop a person having food or drink?• Does the LCP ban drips?• Since going on the LCP, medicines have been stopped
and everything is given by injections. Why?• Does the LCP make people die faster?
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PCT 1 PCT 2 & 3 PCT 4 PCT 5 TotalDNaCPR:2009/102010/112011/12
43% (n=155)45% (n=218)75% (n=214)
41% (n=265)74% (n=329)84% (n=284)
68% (n= 384)75% (n= 435)86% (n= 492)
54% (n=271)71% (n=397)76% (n=361)
52%66%80%
ACP:2009/102010/112011/12
48% (n=155)62% (n=218)76% (n=214)
44% (n=265)61% (n=329)60% (n=284)
60% (n= 384)74% (n= 435)83% (n=492)
51% (n=271)63% (n=397)79% (n=361)
51%65%75%
ICP for last days:2009/102010/112011/12
33% (n=155)59% (n=218)70% (n=214)
5.5%(n=265)30% (n=329)51% (n=284)
44% (n=384)60% (n= 435)72% (n= 492)
17% (n=271)37% (n=397)59% (n=361)
25%47%63%
Comparison of data on DNaCPR; ACP & ICP – 2009 to 2012
Care Home Project Team, St Christopher’s, London
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2007/2008 2008/2009 2009/2010 2010/2011 2011/2011
Percentage of deaths occurring in NHs [numbers of deaths]
57%
n=324 deaths across
19 NHs
67%
n=989 deaths across
52 NHs
72%
n=1071 deaths across
53 NHs
76%
n=1375 deaths across
71 NHs
78%
n=1351 deaths across
71 NHs
Comparison of place of death across nursing homes
Care Home Project Team, St Christopher’s Hospice [2007 to 2012]
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Action Evaluation implementing Namaste in five nursing homes in SE London – Min Stacpoole & Jo Hockley
Cited by Alzheimer’s Society (2012) ‘My life until the end: dying well with dementia’
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The Power Of
Loving Touch
namastecare.com
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NAMASTE CARE - KEY ELEMENTS (Simard, 2013)
“Honouring the spirit within” Sensory stimulation: 5 senses
Sight, touch, taste, hearing, smell The presence of others Meaningful activity Life history Comfort and pain management Family meetings Care of the dying and after death
Care staff education
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Namaste family meetings (i)
Entry to Namaste triggers family meeting to open conversation about future plans around end of life
Seeks help of family “to honour the spirit within” Life story – especially sensory triggers for
reminiscence Person’s likes & dislikes
e.g. favourite music
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Namaste family meetings (ii)Acknowledges disease progression early and
in a positive contextEstablishes comfort and pleasure as the aims
of careOpens conversation around DNACPR,
hospitalisation, preferred place of deathUltimate goal is peaceful, dignified death
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BROMLEY END OF LIFE (EOL) CARE PARTNERSHIP
EOL Co-Ordination Centre• Co-ordinates care• All referred patients get
an assessment visitBy a nurse• Advance care planning• Decision on keyworker• Keeps CMC registering
to date• Administrates • equipment• 24/7
PRUHPalliative care
teamPACE Team
Discharge Team
6 weeks of personal care for discharges
from PRUH or patients deemed to be in last
year of life now + volunteer support
Bid into enablement board
Nursing & Residential care home programme
Community Nursing (Bromley Health)
Planned night care
(Marie Curie)
Multi visit personal care for continuing care patients (New)
volunteer support Future aspiration
Mental Health
Services (Oxleas)
Co-ordination centre proposal being developed by the ProMise programme