End of life care for people with dementia: complexity and ... · •Many people with dementia reach...

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End of life care for people with dementia: complexity and decision- making Dr Nathan Davies Research Department of Primary Care and Population Health, UCL Centre for Dementia Palliative Care Research, Marie Curie Palliative Care Research Department, UCL @NathanDavies50 @Caps_UCL @MCPCRD

Transcript of End of life care for people with dementia: complexity and ... · •Many people with dementia reach...

Page 1: End of life care for people with dementia: complexity and ... · •Many people with dementia reach the end of life without a care plan •Often people with dementia, families and

End of life care for people with

dementia: complexity and decision-

making

Dr Nathan Davies

Research Department of Primary Care and Population Health, UCL

Centre for Dementia Palliative Care Research, Marie Curie Palliative Care

Research Department, UCL

@NathanDavies50

@Caps_UCL @MCPCRD

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• Overview of dementia and end of life care

• Some of the challenges families and professionals

face

• 2 Streams of work:

– Supporting professionals

• Rules of thumb

• Comfort on the acute hospital ward

– Supporting family carers

• Online support for family carers

• Decision making support for family carers

What’s on today?

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Dementia worldwide and the UK

• 850,000 people with dementia in the UK

• 700,000 family or friends caring for someone with

dementia

• 115 million people with dementia by 2050

• Numbers of those with dementia and two or more

other comorbidities will more than double by 2025

and then increase further by 2035

Kingston, A., Comas-Herrera, A., & Jagger, C. (2018). Forecasting the care needs of the older population in England over the next 20 years: estimates from the Population Ageing and

Care Simulation (PACSim) modelling study. The Lancet Public Health.

Lewis et al (2014). Trajectory of Dementia in the UK – Making a Difference, report produced the Office of Health Economics for Alzheimer’s Research UK

Prince, M et al. (2014) Dementia UK: Update Second Edition report produced by King’s College London and the London School of Economics for the Alzheimer’s Society

Prince, M et al (2015). World Alzheimer’s Report 2015, The Global Impact of Dementia: An analysis of prevalence, incidence, cost and trends. Alzheimer’s Disease International

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Issues, dilemmas, complications and

decisions

• Comorbidities

• Eating and drinking

difficulties

• Breathing difficulties

• Agitation and

restlessness

• Increased infections

• Pain

• Incontinence

Davies N, Iliffe S. End of life care—why those with dementia have different needs. BMJ. 2016;353(i2171).

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Guidelines • NICE: Improving Supportive and Palliative Care

for adults with cancer.

-cancer specific

-did not address the needs of people with

dementia

• NICE: Care of dying Adults in the Last Days of

Life.

-care in the last 2-3 days of life

• NICE: Dementia: assessment, management and

support for people living with dementia and their

carer

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• What’s the alternative to another pathway or

another guideline?

• Are rules of thumb the answer?

*Taken with permission from stroke.org.uk

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MethodsCo-design approach with three phases:

Phase 1) Literature review and previous interviews

Phase 2) Groups interviews and individual interviews

with practitioners and family carers.

Phase 3) Field testing in 5 sites including:

– 1 general practice

– 2 palliative care community teams

– 1 complex care ward

– 1 community nursing team

Refined through a series of workshops with an expert user

group, using nominal group in an iterative co-design

process

Davies, N., Mathew, R., Wilcock, J., Manthorpe, J., Sampson, E. L., Lamahewa, K. & Iliffe, S. (2016). A co-design process developing heuristics for practitioners providing end of life care for people with dementia. BMC Palliative Care, 15.

Davies, N., Rait, G., Maio, L., & Iliffe, S. (2016). Family caregivers’ conceptualisation of quality end-of-life care for people with dementia: A qualitative study. Palliative Medicine. DOI: 10.1177/0269216316673552

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Key Decisions

1. Swallowing and eating difficulties

2. Agitation and restlessness

3. Reviewing treatment and interventions at the end

of life

4. Providing routine care

Davies, N., Mathew, R., Wilcock, J., Manthorpe, J., Sampson, E.L., Lamahewa, K., Iliffe, S. (2016). A co-design process developing heuristics for practitioners providing end-of-life-care for people with dementia. BMC Palliative Care, 15(68).

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1Don’t let eating/swallowing problems come as a surprise (ensure conversation has occurred with the person with dementia and family or advocate early, around the time of diagnosis). Consider advance care planning (ACP).

Is dementia the cause of the eating/ swallowing difficulties?

*‘Comfort feeding only’

**Stop feeding, promptlyconsider if there is a reversible

cause?

Yes

***Discuss specialist care

Convert oral medication to liquid/injectable form

May need specialist input. E.g. SALT

NoYes

No

‘Comfort feeding only’*

2

Eating/swallowing difficulties

*comfort feeding may carry associated risks of aspiration**Closely observe all intake particularly if changes to swallow function are suspected*** Consider appropriateness on individual basis

If it is an emergency follow principles of first aid

Copyright © 2016 Nathan Davies and Steve Iliffe

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Agitation/restlessness

Look for an underlying cause (don’t always attribute it to the dementia)

Is there an environmental/social cause?

Is there a physical cause?

No identifiable cause o Is there a non-drug treatment?

( i.e. music therapy, massage, aromatherapy)o Trial of pain reliefo Seek specialist helpo Trial of antipsychotic medication (after

discussion with family/advocate)

What has changed?(speak with and seek help from families/advocate)

Check the health and wellbeing of the carer

Consider throughout is the individual a risk to themselves or others

around them?

Copyright © 2016 Nathan Davies and Steve Iliffe

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Is the current treatment/intervention still needed?

Yes No

Stop treatments and interventions not contributing to comfort or having positive impact on quality of life

Review comfort and quality of life after any change in treatment; be prepared to restarttreatments (as it is not always clear beforehand if something is having an impact on comfort and quality of life)

Continue with current regime

2

Remember discuss with family/advocate

Reviewing treatment and interventions at the end of life

Towards the end of life, only continue or initiate medication or interventions that are likely to maintain comfort or have a positive impact on quality of life

1

Copyright © 2016 Nathan Davies and Steve

Iliffe

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Make adaptations

Is routine care causing distress?

Can the way that care is delivered be adapted to better suit the persons’ needs?

Yes No

Provide routine care with the goal of maintaining comfort and dignity

Yes No

Try again later

Is this a recurring issue? If yes go to rule 1

Discuss with family or advocate regarding what is an acceptable level of care and how best to provide it?

Providing routine care at the end of life

2

1

3Consider referring to

rules of thumb for agitation and restlessness

Copyright © 2016 Nathan Davies and Steve

Iliffe

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Evaluation

• Synthesis of best practice

– “We already do this”

– Years of experience represented in simple format

• Provided a structure and broke down complexity

• Provided authority and permission

• Offered a source of reassurance and validation

• Appreciated the simplicity

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What’s next for this work?

• Can we use rules-of-thumn in the acute hospital

ward to help maximise comfort and distress?

• How can we use these principles to support family

carers?

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Supporting family

carers – online support

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Care for people with Dementia given by Relatives at the

End of life: CADRE Study

• What do carers struggle with towards end of life or

need more support with? Is there a role for the

internet?

– Expectations and planning for death and dying

– Shrinking social network

– Honest open discussions of taboo topics

– Engagement with professionals

– Co-ordination of services and support

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What do carers want – can we do it online?

• Need for more information and managing expectations

• Financial implications and consequences

• Medical decline – symptoms

• Local services

• A source of reassurance

• Planning for the future

• What happens when someone actually dies?

• Opportunity to talk to someone

• Engagement beyond the computer screen

• But a platform to find someone (not online dating)

• Sometimes a preference for professional facilitation

Hopwood J, Rait G, Walters K, Iliffe S, Ross J, Davies N. (2018). A systematic review of digital interventions aimed at supporting family carers of people with dementia. Journal of Medical Internet Research, 20 (6).

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Home > End of life > Information

Supporting someone at the end of life

Introduction to the page, overview.

Watch xxx’s story

Xxx has been caring for…..

Home >

Video ofcarer

PlanningPractical information including

Lasting Power of Attorney, Do Not

Resuscitate, Advance Care Planning

and different types of care.

What can I expect towards the

end of life?

Information on common symptoms

and challenges faced at the end of life.

Home

Preparing for Death

Advice on planning a funeral and what

happens when someone dies.

Day to day caring

Coordinating different services and

the day to day challenges of

supporting someone at the end of life.

Planning

Financial information

Information on benefits, transport,

wills and settling an estate.

Looking after

yourselfDay to day

of caring

What can I expect

towards the end of life?

Preparing

for deathFinancial

information

Talk to a

professional

Looking after yourself

Find information here on ways to

manage stress, feelings of guilt, anger

and grief.

Communication

Communication tips and activity ideas.

Talk to a professional

Details of our helpline to speak to a

professional.

Where can I get support?Details of other useful services and

support in your area.

Chat to

a carer

Family relationships and social

networksCommunicating with family members

and changes to social networks

Chat and support from a carer

Log in to our private section to speak

to other carers.

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Supporting family carers

making decisions

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Making decisions for others

• Many people with dementia reach the end of

life without a care plan

• Often people with dementia, families and

professionals are not ready to have conversations

about the future

• Decisions are left to family (or friends) carers

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• Carers are left with difficult decisions as

proxy

“From my contact with other carers I think making

decisions for someone you love is one of the

hardest things to bear” (Lay reviewer 15)

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How can we best support carers? A Decision

aid?

• A communication tool

• Designed to help people make specific and

deliberated choices

• Providing information on the options and

outcomes

• May include:

– information on the disease/condition

– health risk factors

– information on others’ opinions

– guidance or coaching 22

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WS1

Identify existing

decision aids

WS2

What are the difficult

decisions to make

and how should they

be made?

WS3

Co-design

development of a

decision aid

People with

dementia and

family carers

Practitioners,

carer

organisations

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Families significant decisions

• Medical care – how do you enough is enough?

• Social care – when do we need more support?

• Residential care – when is it time and can I do

this?

• How do I keep them safe?

• When do we have these discussions?

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Summing up

• Both families and professionals which are faced

with complex, significant decisions

• Breaking down decisions, aids clarity and care

• Supporting carers, supports and helps the person

with dementia and care services

• Need to make use of all types of technologies to

help provide care throughout dementia course not

just end of life

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[email protected]

NathanDavies50

Caps_UCL

This research was supported by funding from the Alzheimer’s Society grant number AS-PG-2013-026 and by the Marie Curie

Research Programme, grant C52233/A18873, a Fellowship award from Alzheimer’s Society, UK (AS-JF-16b-012) and the NIHR

School for Primary Care Research The views expressed here are those of the authors and not of the Alzheimer’s Society or Marie

Curie. The views expressed are those of the authors and not necessarily those of the NIHR, the NHS or the Department of Health.