Delivering high quality compassionate care at the end of life

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

28. 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