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

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• 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

Death

High

LowTime

Function

Death

High

Low

Time

Function

The Dementia Trajectory

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 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)

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 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.

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:

– 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?

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 2012Care Home Project Team, St Christopher’s, London

2007/2008 2008/2009 2009/2010 2010/2011 2011/2011Percentage 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]

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 (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

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

reminiscencePerson’s likes & dislikes

e.g. favourite music

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

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

Thank you

j.hockley@stchristophers.org.uk