End of life care for people with advanced dementia - Bromley

1. 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

2. 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.

3. 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

4. Function High Death Low Time Function High Death Low Time When is end of life reached for the person with dementia ? Cancer Trajectory The Dementia Trajectory

5. 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

6. 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)

7. 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

8. 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?

9. 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 • 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.

10. Looking Ahead document ..documenting wishes and preferences in the event of a ‘best interest’ meeting for people with dementia.

11. 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

12. 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?

13. Comparison of data on DNaCPR; ACP & ICP – 2009 to 2012 Care Home Project Team, St Christopher’s, London

14. Comparison of place of death across nursing homes Care Home Project Team, St Christopher’s Hospice [2007 to 2012]

15. 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’

16. The Power Of Loving Touch namastecare.com

17. 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

18. 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

19. 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

20. 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 Community Nursing (Bromley Health) 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 Multi visit personal care for continuing care patients (New) volunteer support Future aspiration Mental Health Services (Oxleas) Planned night care (Marie Curie) Nursing & Residential care home programme Co-ordination centre proposal being developed by the ProMise programme

21. Thank youj.hockley@stchristophers.org.uk