Anticipatory Care Planning in Dementia Dr Rebecca Bancroft Consultant Geriatrician

Learning Objectives Improve understanding of Dementia as a life limiting illness Recognise the cardinal features of Advanced Dementia Identify common burdensome interventions often experienced by individuals with Advanced Dementia Learn a practical approach to ACP

Case 80 year man Admitted from home with poor oral intake Known Frontal lobe dementia Inpatient 14 days Diagnosis “progression of dementia’ Discharged to EMI NH Readmitted 7 days later Poor oral intake Diagnosed dehydration

Case continued Would not tolerate IV line Transferred back to care home with subcut fluids NO ACP at any stage Review by me 3/7 ACP in place Wife relieved Care Home staff reassured GP confident to start LCP in near future

What is ACP? 5

Definition: ‘A process of discussion between an individual and their caregivers (and often family) about their wishes regarding their future care’1 1. NEOLCP. ACP: A guide for health and social care staff. London, 2007 6

Care planning vs ACP Care planning refers to care of people with and without capacity ACP refers to an advanced process of decision making for people WITH capacity If capacity is absent care planning IS still possible using Best Interests Consultation of close family or friends May need IMCA

End of Life 1 GMC Focus of care switches to comfort ‘entering the last year of life’ Focus of care switches to comfort Avoidance of burdensome interventions Unnecessary medications Hospital admissions

End of Life 2 Common burdensome interventions include: Hospital admission / attendance 70% due to pneumonia Tube feeding IV therapy Much less likely to occur if HCP and patients’ proxies have good understanding of the trajectory of the illness 9

The key to reducing burdensome interventions Why is ACP needed? The key to reducing burdensome interventions 10

Kutner 1969 Avoiding ‘heroic treatment’ in the face of a ‘hopeless prognosis’

Why? 60 – 90% of the general public is supportive of ACP Only 8% have any form of document in place 10 – 20% in US, Japan, Canada and Germany Most healthcare professionals have a positive attitude to ACP Doctors tend to have most reservations about validity and applicability 12

Why? A means of documenting peoples’ views and wishes Voluntary process Some people do not want to discuss EOL Informs and empowers people to make decisions about their current and future treatment 13

Dementia as a life shortening illness

Prognosis 1 Mean survival is 4.5 years Range 3.8 - 10.7 years NB: date of diagnosis different to date of onset Longer survival with younger age of onset Women survive longer than men Majority of patients with Dementia enter 24 hour care before they die ~76% On average 18 months

Symptom progression in Alzheimer's disease. Adapted from Feldman et al3 Burns, A. et al. BMJ 2009;338:b158 Copyright ©2009 BMJ Publishing Group Ltd.

Prognosis 2 What is the cause of death in patients with dementia? Death due to unrelated cause Death directly from Dementia Death as a result of interaction between dementia and other disease

Prognosis 3 We are very poor at estimating prognosis in patients with dementia1 1% NH residents with dementia thought to have prognosis < 6 months 70% died within 6 months Easily identifiable markers of advanced dementia Aids prognostication and decision making 1. Mitchell et al. Arch Intern Med 2004; 164(3):321-326.

Why is identifying Advanced Dementia so important?

To ensure that all people with dementia receive good End of Life care

Current Challenges 1 Under diagnosis of dementia Only 1/3rd people with dementia have any specialist healthcare assessment or diagnosis Lack of identification Stigma When they do it is often: Late in the progression of the illness In crisis Too late to enable effective interventions

Current Challenges 2 Determining when is ‘end of life’? Difficulty anticipating death Long illness trajectory Dementia not seen as a life shortening illness

Advanced Dementia The last year of life 24

Advanced Dementia 1 Indicators include (ALL of): Unable to walk without assistance Incontinence No consistently meaningful verbal communication Unable to dress without assistance Reduced ability to perform activities of living Gold Standards Framework (2008)

Advanced Dementia 2 Plus any of the following: 10% weight loss in previous 6 months without other cause severe pressure ulcers reduced oral intake / weight loss aspiration pneumonia Prognosis at this stage 6 – 12 months

Advanced Dementia 3 Common complications include1: Pneumonia (41%) Febrile episodes (53%) Eating problems (86%) All are predictors for high 6 month mortality (~50%) Mitchell S et al. NEJM 2009; 361 (16) 1529 – 1538. 27

Misconceptions about Dementia and dying 28

Common Misconceptions Cardio-pulmonary resuscitation Artificial Nutrition and hydration Antibiotic therapy Transfer to an acute hospital 29

Cardio-Pulmonary Resuscitation Out of hospital cardiac arrest in a NH survival to discharge success is 0 - 5%1 In hospital CPR is 3 times less successful if dementia is present similar to metastatic cancer ~ 95% of people would not want CPR if they had advanced dementia2 1. Zweig. Archives of Family Medicine 1997; 6: 4249 - 4290. 2. Schonwetter et al. J Am Geriatr Soc 1996; 44(8): 954 - 958. 30

Older Peoples’ views American study in a retirement village 41% residents opted for CPR before learning about survival statistics 22% desired CPR when best success rate of 10 - 17% was presented 5% desired CPR when best success rate in the presence of a chronic illness was presented as 0 – 5% 31

Artificial Nutrition 1 No RCTs on the effectiveness of tube feeding However, we do know that tube feeding in dementia does not1,2: Prevent aspiration pneumonia may increase its incidence Prevent the consequences of malnutrition Increase survival Prevent or improve pressure ulcers Reduce the risk of infection Improve functional status Improve comfort of the patient 1. Finucane TE et al. Tube feeding in patients with advanced dementia: A review of the evidence. JAMA 1999; 282(14):1365-1370. 2. Gillick MR. Sounding board - Rethinking the role of tube feeding in patients with advanced dementia. N Engl J Med 2000; 342(3):206-210. 32

Artificial Nutrition 2 Murphy et al1 Median survival 59 days in patients who had PEG (n=23) 60 days in patients who did not undergo PEG placement (n= 18) 1. Murphy et al. Percutaneous endoscopic gastrostomy does not prolong survival in patients with dementia. Arch Intern Med 2003; 163(11):1351-1353. 33 33

Antibiotic Therapy Effective in single episodes of intercurrent infection in NH residents with dementia Limited by recurrence of infections in advanced dementia Recurrent antibiotic therapy does not prolong survival in residents with severe dementia1 unable to communicate and unable to walk alone / with assistance 1. Van der Steen et al. J Am Geriatr Soc 2002; 50(3):439-448. 34

Transfer to an Acute Hospital 1 Patients with Dementia are 5x more likely to die in hospital Significant negative effects of hospital admission Falls Delirium HAI Pressure sores Weight loss 35

Transfer to an Acute Hospital 2 Transfer from NH to hospital results in decline of psycho-physiological functioning including1: Mobility and transfers Toileting Feeding Grooming None of these functions improve significantly back to baseline at discharge 1. Volicer et al. Neurologic Clinics of North America 2001; 19(4):867-885. 36

Transfer to an Acute Hospital 3 Evidence that hospitalisation is not necessary for treatment of pneumonia in NH residents Immediate survival and mortality rates similar for treatment provided in NH or hospital1 Long-term outcomes better in residents treated in the NH2 6 week mortality 39.5 % in hospitalized 18.7% in non-hospitalized residents no significant differences between the 2 groups before diagnosis 1. Fried et al. J Gen Int Med 1995; 10(5):246-250. 2. Thompson et al. J Am Board Fam Pract 1997; 10(2):82-87. 37

However…………………………….. Residents dying in NH with advanced dementia1: 8x less likely to have DNR order than those with terminal cancer Few (1.5%) have advanced directives to avoid hospital Comfort is main goal Much more likely to undergo burdensome interventions 25% PEG tube (cf 5% cancer) 1. Mitchell et al Arch Intern Med. 2004; 164: 321 – 326. 38

Stages of ACP

Stages 1 Identification of residents that would benefit from ACP Assessment including capacity Discussion with resident and / or family Formulation of the ACP document Medication review Regular clinical review

Stages 2 1. Identification 2. Assessment GSF prognostic indicator guidance Increasing frailty Change in condition including weight loss, recent hospital admission 2. Assessment Holistic CGA approach Capacity assessment

Stages 3 3. Discussion with resident and / or family Prognosis Expected clinical course including predictable complications eg feeding issues, pneumonia Unexpected complications and possible outcomes eg fall with fracture and hospital admission for pain control

Stages 4 4. Formulation of the ACP document 5. Medication review Shared with ALL necessary agencies 5. Medication review Stop all meds where time to benefit is less than prognosis Bisphosphonates, statins, BP meds, many others

Stages 5 6. Regular clinical review Monthly review of general condition eg Weight / MUST, symptoms, skin care, hospital attendances, family concerns Annual review if still alive – validity and applicability

My role Meet with patient, relative, Care Home staff and relatives The care plan: Physical and functional assessment Capacity assessment Robust care plan, focused on timely intervention Good palliation within the Care Home Does not preclude admission if the unexpected happens

Outcomes to Date 1,245 ACPs since November 2009 52% due to Advanced Dementia Majority of the rest due to increasing frailty 854 have died 839 in the Care Home Reduction in deaths in hospital within 24 hours of admission reduced by 52% 27% to 13%

‘New’ National campaign ‘Find your 1% Campaign’ New prognostic indicator guidance: Surprise question General indicators of decline Function, recurrent admission, entry into NH Disease specific indicators of decline COPD, CCF, Dementia Available at: http://www.endoflifecareforadults.nhs.uk/assets/downloads/EoLCNewsletterSeptember2011v4.pdf

Summary Dementia is a terminal disease with a long trajectory There are easily identifiable markers of disease progression in Dementia We are currently poor at identifying people with Advanced Dementia It is vital that we ensure that people with Dementia receive good End of Life care The key to reducing burdensome interventions is Advanced Care Planning

Therefore……………….. Reversible risk factors should be looked for in all residents Do something to reverse them Or modify the associated risk For ALL factors Then when people fall, use this as a red flag to look for and modify those same factors all over again SIMPLES!