End of Life Care in Dementia. Dr Rosie Lockwood Consultant Geriatrician Sheffield Teaching Hospitals

Transcription

1 End of Life Care in Dementia Dr Rosie Lockwood Consultant Geriatrician Sheffield Teaching Hospitals

2 Agenda Some facts and figures What are the challenges? What is good care? How do we know this? Specific issues A case

3 Dementia A set of symptoms, including memory loss, mood changes, and problems with communication and reasoning Predicted that there are 850,000 people with dementia in the UK Proportion of people with dementia doubles in every five-year age group 1 Alzheimer's society

4 Dying with Dementia 60,000 deaths in the UK per year attributable to dementia 1 I in 3 people >65 die with dementia 2 1 Alzheimer's society 2 Sampson et al 2013 Int J Geriatric Psychiatry

5 Dementia in the Community Two thirds of people with dementia live in the community 80% people in care homes have dementia 1 Alzheimer's society

6 Dementia in the Acute Hospital Detectable cognitive impairment 48% medical admissions in those >70 (not delirium) 42% met diagnostic criteria for dementia Length of stay significantly longer for those with MMSE<24 Risk of death during admission significantly higher (24% MMSE 0-15 vs 7.5% MMSE>24) Sampson et al 2009 BJPsychiatry

7 So Lots of people have dementia Lots of people with dementia are old (and frail) Lots of (old, frail) people with dementia die Lots of older people admitted acutely to hospital have dementia (even if this isn t diagnosed before) and then die So you will come across them

8 What Happens? Boston study, 323 NH residents, followed for 18 months Half died Probability death in 6 months 24% Mitchell et al NEJM

9 Condition Frequency 6 mortality rate Complications Common Each associated with increased 6 month mortality rate Pneumonia 41% 47% Other febrile episode Eating problems 53% 44% 86% 39%

10 Symptom Frequency Distressing symptoms Common All increased in frequency as residents reached the end of life SOB 46% Pain 39% Pressure sores 39% Agitation 54%

11 Intervention Frequency Burdensome intervention 177 who died Common Useful? Necessary? Parenteral therapy 30% Hospitalization 12% Visit to ER 3% Tube feeding 7.3%

12 Sentinel Events Stroke, MI, GI bleed, hip fracture Rarely precipitated death

13 Proxies Variable understanding of prognosis and complications Those whose proxies had better understanding were less likely to have burdensome interventions Understanding not related to physician counselling

14 Recognition Median survival 4.1 years from diagnosis (screening) 1.9 years in those >90 Overestimate prognosis (1% people expected to survive <6 months on admission to care home, 71% died) Sampson et al 2011 BJPsych

15 How do we know who? Patients in care homes with advanced dementia Pneumonia, febrile episodes, eating problems SPICT GSF

16 SPICT Supportive and Palliative Care Indicators Tool Unable to dress, walk or eat without help Eating less Incontinence Weakness, fatigue, inactivity Unable to communicate Hip fracture, falls Recurrent febrile episodes

17 Gold Standards Framework Triggers Unable to walk without assistance Incontinence No meaningful conversation Unable to do ADLs Barthel <3 And any of: Weight loss UTI Grade 3 or 4 pressure sores Recurrent fever Reduced oral intake Aspiration pneumonia

18 Summary Prognosis in advanced dementia is poor (similar to metastatic breast cancer) Symptom burden is high Patients often undergo burdensome interventions in final months of life Less likely if proxies are better informed

19 Feeding in Advanced Dementia Assisted oral nutrition or hydration is basic care IV/NG/PEG is medical treatment Basic care must ALWAYS be offered Medical treatment must be offered if it will provide overall benefit Issues around food and drink are emotive

20 Evidence for PEG in Dementia Median survival not increased (59 vs 60 days) 1 High initial mortality (28% vs 54% died within a month) 90% died within a year 2 1 Murphy 2003 Arch Int Med 2 Sanders 2000 Am J Gastro

21 What is Good Care? Interviews with carers of those who died with dementia Health professionals Multiple sites Three basic elements emerged: meeting physical care needs; going beyond task-focused care; planning and communication. Lawrence et al 2011 BrjPsych

22 Meeting Physical Needs Understand the problems of dementia Eating and drinking Personal care and hygiene Pain management

23 Going Beyond Task-Focused Care More than just attending to the basic needs Care delivered with compassion Tailored to the individual Difficult when the individual cannot tell you Balance professional and personal feelings

24 Planning and Communication General consensus amongst professionals that AD a good idea Lack of ownership Families generally unaware of them Proactive decision making, rather than reactive Structure to involve family in decisions

25 Summary Good end-of life care is not complicated Basic care, delivered with compassion, with clear communication with carers.

26 Case 89 year old lady Advanced PD and dementia Living alone with carers four times a day and family Admitted with pneumonia and dehydration Abx, fluids, NG tube for medications 33kg

27 Progress Ate very little, wouldn t open mouth, spat food out Little communication leave me alone I want to die Hoisted into recliner chair Bloods normal Stable Still has NG tube

28 What to do next?

29 What to do next? Meeting with family Explain prognosis Rationale for not inserting PEG Remove the NG tube Discharge home to carers and family with advanced plan not to readmit for fluids/abx

30 What happened? Family demanded a PEG Prolonged admission Repeated discussions/legal advice PEG and discharge Readmitted few months later with pneumonia

31 What did I learn? Things don t always turn out how you expect them to Care tailored to the individual Applying research evidence Earlier discussion with family about expectations

32 Summary Dementia is common and terminal Good end-of-life care in dementia is good care There are recognised indicators that people are reaching the end of their life Proactive decision making where possible Involve carers whenever possible

33 Thank you 1 Alzheimer's society