Anticipatory Care Planning in Dementia

Dr Rebecca BancroftConsultant 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?

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

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 – ‘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

The key to reducing burdensome interventions

Why is ACP needed?

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

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

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

Copyright ©2009 BMJ Publishing Group Ltd.

Burns, A. et al. BMJ 2009;338:b158

Symptom progression in Alzheimer's disease. Adapted from Feldman et al3

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

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%)

1. Mitchell S et al. NEJM 2009; 361 (16) 1529 – 1538.

Misconceptions about Dementia and dying

Common Misconceptions

1. Cardio-pulmonary resuscitation

2. Artificial Nutrition and hydration

3. Antibiotic therapy

4. Transfer to an acute hospital

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.

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%

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.

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.

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.

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

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.

Transfer to an Acute Hospital 3Evidence 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.

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.

Stages of ACP

Stages 1

1. Identification of residents that would benefit from ACP

2. Assessment including capacity3. Discussion with resident and / or

family4. Formulation of the ACP document5. Medication review6. Regular clinical review

Stages 2

1. Identification– 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– 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!