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  1. Delivering high quality compassionate care at the end of life Dr Victor Pace vv Consultant in Palliative Medicine vv St Christopher's Hospice vv

  2. Know your audience v

  3. People die of dementia • Best estimate 60,000 excess deaths a year – probably an underestimate • Contributes to 1 in 7 deaths in the UK • 1 in 3 over 60s have dementia in the last year of life

  4. Epidemiology: cause of death • Mainly infections • bronchopneumonia • aspiration pneumonia • Strokes – risk significantly higher if on antipsychotics • Myocardial infarction • Pulmonary emboli – 8% in one series • Unsuspected malignancy 4-8%

  5. Advanced dementia • 2/3rds of the duration of illness in a typical Alzheimer’s patient • Symptoms often straightforward to treat but hard to assess • Combination of neuropsychiatric and physical illness requires collaboration between generalists and several specialists

  6. It’s not just neuropsychiatric • Weight loss and frailty • Mobility: falls, immobility, pressure sores, contractures • Communication • Swallowing and feeding difficulties • Proneness to infections • Double incontinence

  7. Changes over time Frailty Behavioural problems Physical problems

  8. How common is pain in advanced dementia? • Estimates from various surveys vary from 28-83%. • 73.4% of 124 patients with advanced dementia had pain at first visit. • 23.1% of these were on analgesics

  9. Common & severe symptoms in advanced dementia

  10. Recognising problems in uncommunicative patients Advanced dementia • very little memory • very little verbal communication • very little concept formation • eventually, little non-verbal communication

  11. Multimorbidity is common Barnett , K et al Lancet Volume 380, Issue 9836 2012 37 - 43 Epidemiology of multimorbidity and implications for health care, research, and medical education: a cross-sectional study

  12. Can we identify the last year of life? Prognostic indices • FAST score not reliably predictive • ADEPT, MSSE scales sensitive but not specific Valid prognostic indicators • Nutritional status • Presence of comorbidities • ? Functional and cognitive deterioration Brown Palliative Medicine 2012

  13. What care? V

  14. Does it matter? • We must not fetishise end of life care – people need good care whenever they need it. • End of life in advanced dementia very prolonged - long trajectory, low level functioning. • Spotting the end of life in dementia can be very difficult. It is also unimportant. The real issue is… Frailty

  15. A different approach from rest of end of life care • Often, function more than symptoms • Eventually, comfort more than function • Family, especially main carer, as much as patient

  16. Objectives of care • Advance care planning • Good symptom control • Support to carers • Keep people in their home if at all possible

  17. We are caring for two individuals Person with dementia Carers • Carer stress • Carer illness • Carer burden

  18. Location, location, location Where do they live? Where do they die?

  19. In advanced dementia, acute hospital care is… • distressing for patients, family and staff • care setup inappropriate • more expensive • longer admissions • more early readmissions • dangerous: x4 mortality if more advanced dementia • 1.3 x risk of dying within the following year if advanced dementia (= half the survival)

  20. Preferred place of care • If PPC chosen, more likely to be achieved. • But long course of dementia: place may change substantially • Surrogate decision making – LPA, Advance Directives – limitations • Qualities of care rather than place, allow relatives and professionals to find best fit.

  21. Supporting the carer (with others) • Information • Emotional support • Helping through the maze of services, practical support, breaks from care • Advance care planning • Choices e.g. hospital admission, artificial feeding and hydration • Pointing out and supporting through approaching death • Bereavement care

  22. Reinforcing existing services • Not a new layer of care – confusing plethora of services • Collaboration • primary care, care home staff • medicine of the elderly, old age psychiatry • therapists: physio, OT etc • social services etc • Opening up nursing homes to specialist services

  23. What can primary care do? • Recognition • Advance care planning • Dementia register • Regular multiprofessional review • Referral to other services as for any other terminally ill patient e.g. physio, occupational therapy, palliative care • Coordination with old age medicine, old age psychiatry, palliative care

  24. How do we support primary care staff? • Education • Modelling • Ongoingsupervision and mentoring – discussing live issues • Analysis and discussion of results

  25. Skills palliative care can pass on • Symptom recognition and management • Communication • Bad news • Recognising impending death • Communicating with other professionals

  26. New approaches and some controversy • Emphasis on function not symptoms More emphasis on social care • Triage complex problems for specialist review • Not continuous involvement but dipping in and out of care • Separate from mainstream palliative care service to prevent low prioritisation – but mutual enrichment

  27. In summary • We will see many more people with no one principal diagnosis but a web of conditions of which dementia is one • who are frail and have great functional deficits and social problems as well as symptoms • Implications for • specialist training for doctors, nurses, therapists • services: training, ongoing supervision and support • data collection e.g. MDS • death certification