Palliative Care and People with Learning Disabilities

Linda S McEnhillCoordinator NNPCPLD and Macmillan Network Information and Support Service

What Is Learning Disability?

Department of Health

‘A reduced ability to understand new or complex information (impaired intelligence) and reduced ability to cope independently ( impaired social functioning) which began before adulthood and which has a lasting effect on development.’

Indicators of Learning Disability: CLDT West Sussex

History of being excluded/suspended from mainstream school

Case notes which refer to special school history Previous formal assessment of level of functioning

( psychology report) Clinical notes from various areas which present a

picture of difficulties in a number of areas of adaptive behaviour- not explained by an alternative label e.g. mental health

Reading and maths skills up to grades 3-6 but rarely beyond

Unable to acquire complex practical and vocational skills

Other family members diagnosed with ld

None LD Indicators: CLDT West Sussex

School exam results higher than expected, attended mainstream education without education support

Employment history showing person coping without expected levels of support

Suggestion of onset of problems post 18 Variable amount of support needed Holds a driving licence/drives a car Completes complex purchases without help Age approp dev until head injury or accident Age approp dev until chronic mental health

problems

What’s the Point and What’s the Difference?

Because of improved paediatric healthcare there are more people with LD but often with more severe physical disabilities (+1% per yr).

PWLD have much poorer physical health, but are living longer, and are consequently likely to experience conditions which require palliation.

May have elderly family/carers who require pc (1/3 0f pwsld live with carers 70+ yrs) and will require psycho-social support. 18hrs:20 mins

Long stay hospitals which previously filled the EOLC gap no longer exist and therefore these needs will need to be met in the community.

The National Network for Palliative Care of People with Learning Disabilities

Why a Network?

To overcome individual practitioner isolation

To link and replicate good practice To collate and record instances of

poor practice To more effectively influence

practice and policy in both palliative care and learning disability services

What It Does

Links individuals into regional groups for regular meetings to provide information and support and a forum for collaboration

Provides 2 national study days each year and 2 newsletters

Advises on resources and developing projects ( to telephone or email enquirers)

Macmillan Network Information and Support Service

Funded by MCRF for 3 years To map, collate and design information

nationally about resources ( literature, services, training, personnel). Yr 2 website?

Enhance the email and telephone support service

Raise awareness of the issues re pal care & ld and educate and train to meet these

Service user involvement

Setting the context: Healthcare of PWLD Generally

Higher healthcare needs but less access to healthcare services.

DRC reports that pwld are 4x more likely to die of a treatable illness

BBC News Site reports a recent research study which found that pwld are 58x more likely to die before age 50yrs ( Mencap ‘Death by indifference’ 2007)

Likely, on average, to have 5 undiagnosed conditions at any given time esp. uti’s, sight, and hearing

Higher levels of mental ill health ( 40-60% dual diagnosis 3x schizophrenia, 4x dementia)

20x epilepsy 3x respiratory deaths of ordinary population

Disease Profile

Main causes of death = cardiac and respiratory conditions and dementias

Information on death = poor When cancer diagnosis then often late due to: a) significantly lower access to screening b) issues related to care setting c) ‘over attribution’ of learning disability especially by mainstream staff

d) subjective quality of life decision making

Cancer & People With Learning Disabilities

Recent DOH study suggests:

•Lower incidence of cancer (13.6%:26%)*16%•Lower incidence of bronchus, prostate

and breast cancer

•Significantly higher incidence of gastro-intestinal cancer ( 58% cancer deaths 25% gen. population) H Pylori link- also

lymphoma BILD 2001

Cancer & People With Downs Syndrome

Women with downs syndrome would appear to be less vulnerable to breast cancer (? Genetic protection from extra chromosome?)

People with downs syndrome have a greatly increased risk of childhood leukaemia ( 10-30 times more likely).

Dementia

People with ld are 4x more likely to get dementia

Downs syndrome population particular issues including premature ageing, 6 times as likely to die as ‘ordinary’ population

Increased mortality: 80% will now live in excess of 40yrs but 50% of these will have Downs related dementia-( includes epilepsy, sensory problems and muscle spasms)

People with LD are ‘baby boomers’ too!

That means!

A large ‘bulge’ of people with Down’s syndrome who are beginning to develop dementia and will continue to do so for decades

A group of women who are moving towards menopause and a consequent greater need to access screening services

People moving towards traditional palliative care age group

Last generations of those from long stay hospitals

Now is the time to get ready!

Challenges for Practice

Consent

Treatment

Symptom control

Placement issues

Challenges for Practice

Consent

Whose decision is it anyway?

Mental Capacity Act

How do we ensure ‘informed’ consent?

Hot Issues for Palliative Care: Consent

Whilst the MCA makes the distinction between competent decisions and competent adults clear many pwld have never been ‘considered’ competent in practice. Therefore the fact that there is a legally binding process to be followed could be a benefit for many pwld – making life ‘safer’ for them than it is for them currently.

But will practitioners be skilled enough to enable pwld to demonstrate their competence?

Hot issues for palliative care: assessment of capacity

Many tools with which we assess ‘clarity’ (therefore likely to be used in decisions about capacity) don’t work for people with learning disabilities e.g. MMSE

? On what basis will you assess capacity in a person with a learning disability

? How will you be sure that you are assessing ‘lack of capacity’ as opposed to lack of the requisite communication skills

? Do you have ‘best interest’ processes

Hot issues for palliative care: Consent:Are we clear about what constitutes ‘best interests’ for PWLD?

Greater difficulties in the acute setting due to shortage of time and less highly trained staff

59 yr old woman with a primary breast cancer refused surgery on the basis that she was ‘scared of operations’

But later asked ‘This lump in my breast is growing it wont kill me will it?’

Challenges for Practice Treatment- ‘equity’ of treatment

hindered by.

•Assumptions about lifestyle.•Assumptions about ability to withstand treatment.•Subjective ‘quality of life decisions’. ( Influence of eugenics).•Parents concern about quality of

care when they can no longer physically care.

Caring for the Carers

Majority of carers elderly and have their own health needs (PMLD 18 hrs:20mins.)

Challenges for Practice

Symptom control ‘No sense, no pain’

•Patient may not tell you but may show you

•Therefore importance of base line assessments. ( DisDAT)

DisDAT

See Journal of Intellectual Disability Research, 2006

‘Understanding Distress in people with severe communication difficulties: piloting and assessing DisDAT’

Regnard C et al Most recent version on Mencap websitewww.mencap.org.uk See e-learning section of Help the Hospices

Web site www.helpthehospices.org.uk

Challenges for Practice

Communication

•Does the person use verbal language?•Does the person understand verbal language?

•Is the person a ‘ concrete’ or ‘abstract ‘ thinker?

‘Its very difficult having sickness & diarrhoea together- because you don’t know which one to do first!

The doctors call this a ‘side effect’ but [it doesn’t just affect your sides] …it affects your whole body!’Spoonface Steinberg (BBC)

Challenges for Practice

Placement Issues: Registration Issues ( not unsurpassable

but difficult for grass roots staff) Lack of knowledge of resources & rights

( GP is key). Conflicting demands of other service

users Lack of confidence of LD staff in

challenging primary and secondary providers of palliative care

Picking up the pieces: nursing homes

Very often people with ld are unable to stay in their own ‘homes’ and are admitted to nursing homes at the end of their lives; even when they are relatively young

What needs to be adapted in terms of practice and culture for nursing homes to effectively meet EOLC needs of people with LD? What partnerships need to be developed?

What can you do?

Join with other practitioners in local and national groups

Make links with local hospices/ community palliative care teams to develop policy, study days, link workers

Work with service users proactively on EOLC planning

Kathleen Ann Richards from

‘Caring For Kathleen’ By Margaret Fray ( BILD)

The Palliative Care of People with Learning Disabilities: 2 Things to Remember

‘ ‘Statistics are ‘people with the tears removed!’Statistics are ‘people with the tears removed!’

‘‘The way that we practice healthcare is the means by The way that we practice healthcare is the means by which we demonstrate the value we place on people’s which we demonstrate the value we place on people’s lives.’ (lives.’ (J. Brookes 2000

How to Find Out More

Contact: Linda McEnhillChair, NNPCPLD & MNISS PO Box 522, Cambridge CB1 0BL

Phone 01223 573 173Email: LindaMcEnhill@natnetpald.org.uk

Or at St. Christopher’s Hospice 0208 768 4657Email: L.McEnhill@stchristophers.org.uk