End of life care for people with advanced dementia

Report
End of life care for people with
advanced dementia - Bromley
Jo Hockley RN PhD MSc SCM
Nurse Consultant, Care Home Project Team
St Christopher's Hospice
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.
Dementia progression: FAST staging
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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
When is end of life reached for
the person with dementia ?
Cancer Trajectory
Function
High
The Dementia Trajectory
Function
Death
Low
High
Time
Death
Low
Time
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
Hospitalised patients with endstage dementia receive…
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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)
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
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?
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 consultant
FINDINGS:
• 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
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Common symptoms:
– drowsiness, weakness, anorexia, weight loss, dysphagia.
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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.
Looking
Ahead
document
..documenting
wishes and
preferences in
the event of a
‘best interest’
meeting for
people with
dementia.
Liverpool Care Pathway
• LCP – m/disciplinary Care Plan
• Created to empower the generalist by Prof John
Ellershaw
• Goal orientated
• Three sections:
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Initial assessment
4hrly assessments
12hrly assessments
Care after death
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?
Comparison of data on DNaCPR; ACP & ICP – 2009 to 2012
Care Home Project Team, St Christopher’s, London
PCT 1
PCT 2 & 3
PCT 4
PCT 5
Total
DNaCPR:
2009/10
2010/11
2011/12
43% (n=155) 41% (n=265)
45% (n=218) 74% (n=329)
75% (n=214) 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:
2009/10
2010/11
2011/12
48% (n=155) 44% (n=265)
62% (n=218) 61% (n=329)
76% (n=214) 60% (n=284)
60% (n= 384)
74% (n= 435)
83% (n=492)
51% (n=271)
63% (n=397)
79% (n=361)
51%
65%
75%
33% (n=155) 5.5%(n=265)
59% (n=218) 30% (n=329)
70% (n=214) 51% (n=284)
44% (n=384)
60% (n= 435)
72% (n= 492)
17% (n=271)
37% (n=397)
59% (n=361)
25%
47%
63%
ICP for last days:
2009/10
2010/11
2011/12
Comparison of place of death across nursing
homes
Care Home Project Team, St Christopher’s
Hospice [2007 to 2012]
2007/2008
2008/2009
2009/2010
2010/2011
2011/2011
Percentage of deaths occurring in NHs
[numbers of deaths]
57%
67%
72%
76%
78%
n=324
n=989
n=1071 deaths
n=1375
n=1351
deaths across
deaths across
across
deaths across
deaths across
19 NHs
52 NHs
53 NHs
71 NHs
71 NHs
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’
The Power
Of
Loving Touch
namastecare.com
NAMASTE CARE - KEY ELEMENTS
 “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
(Simard, 2013)
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
Namaste family meetings (ii)
Acknowledges disease progression early and
in a positive context
Establishes comfort and pleasure as the aims
of care
Opens conversation around DNACPR,
hospitalisation, preferred place of death
Ultimate goal is peaceful, dignified death
BROMLEY END OF LIFE (EOL) CARE
PARTNERSHIP
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
Multi visit
personal care for
continuing care
patients (New)
volunteer support
Future aspiration
Planned
night care
(Marie Curie)
PRUH
Palliative care
team
PACE Team
Discharge Team
EOL Co-Ordination Centre
• Co-ordinates care
• All referred patients get
an assessment visit
By a nurse
• Advance care planning
• Decision on keyworker
• Keeps CMC registering
to date
• Administrates
• equipment
• 24/7
Community
Nursing
(Bromley
Health)
Mental
Health
Services
(Oxleas)
Nursing &
Residential
care home
programme
Co-ordination centre proposal being developed by the ProMise programme
Thank you
[email protected]

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