Palliative care: Working with people with learning disabilities Dr Kerry-Ann Holder Principal Clinical Psychologist Paediatric Oncology.

Palliative care: Working Palliative care: Working with people with learning with people with learning

disabilitiesdisabilities

Dr Kerry-Ann Holder Dr Kerry-Ann Holder Principal Clinical PsychologistPrincipal Clinical Psychologist

Paediatric OncologyPaediatric Oncology

‘‘Early contact with learning disability services Early contact with learning disability services will give the palliative care professionals the will give the palliative care professionals the opportunity to acquaint themselves with the opportunity to acquaint themselves with the specific needs of the person with learning specific needs of the person with learning disabilities before the illness takes hold’ disabilities before the illness takes hold’ (Blackman & Todd, 2005:26)(Blackman & Todd, 2005:26)

Group discussionGroup discussion

What is your understanding of a What is your understanding of a learning disability?learning disability?

Defining LD: more Defining LD: more confusing confusing

terminology!terminology!

A learning disability is not......A learning disability is not......

•A brain injury acquired after 18 yearsA brain injury acquired after 18 years

•An illness or diseaseAn illness or disease

•A mental health difficulty A mental health difficulty

•A learning A learning difficultydifficulty** (this is suggestive of a (this is suggestive of a

problem in a specific area of learning)problem in a specific area of learning)

**In the UK, the Warnock Committee has In the UK, the Warnock Committee has suggested that ‘suggested that ‘Learning Difficulty’Learning Difficulty’ should should be used to refer to specific problems with be used to refer to specific problems with learning that might arise as a result of learning that might arise as a result of issues such as medical problems, emotional issues such as medical problems, emotional problems, and language impairmentsproblems, and language impairments

A learning disability is caused by the way the brain develops, A learning disability is caused by the way the brain develops, before, before, during/soon after birth or in childhoodduring/soon after birth or in childhood

Causes of learning disability can include genetics, childhood illnesses, or Causes of learning disability can include genetics, childhood illnesses, or brain injury in early childhood, or unknown causesbrain injury in early childhood, or unknown causes

It can lead to problems with:It can lead to problems with:AttentionAttentionPerception (including perception of time)Perception (including perception of time)Short-term memoryShort-term memoryComprehensionComprehensionExpressionExpressionCoping with changeCoping with change

People with a learning disability have People with a learning disability have global difficulties and global difficulties and find it harder find it harder than others to learn, understand, communicate and express emotionsthan others to learn, understand, communicate and express emotions

Understanding LD Understanding LD

AttentionAttention

The person with LD may have problems with:The person with LD may have problems with:

Focussing on a request that is madeFocussing on a request that is made Not staying focussed for very longNot staying focussed for very long Getting easily confusedGetting easily confused

Perception (including time perception)Perception (including time perception)

The person with LD may have problems with:The person with LD may have problems with:

Their inner ‘time clock’ i.e. to know minutes, hours, Their inner ‘time clock’ i.e. to know minutes, hours, days, weeks..days, weeks..

When the timing of events change, or when they are When the timing of events change, or when they are told something is not going to happentold something is not going to happen

Integrating all of the information they are perceivingIntegrating all of the information they are perceiving

Short-term memoryShort-term memoryMost people can remember up to 7 ‘bits’ of informationMost people can remember up to 7 ‘bits’ of information

The person with LD may have problems with:The person with LD may have problems with:

Remembering complex instructionsRemembering complex instructionsRemembering what you have just saidRemembering what you have just saidRepetitive questioningRepetitive questioningTelling the same story over and overTelling the same story over and over

ComprehensionComprehension

The person with LD may have problems with:The person with LD may have problems with:

Being co-operative - especially if they have not Being co-operative - especially if they have not understood what has been asked of themunderstood what has been asked of themReading and writingReading and writingGetting easily confusedGetting easily confusedGetting angry if they have not understood somethingGetting angry if they have not understood somethingSaying they have understood something when the have Saying they have understood something when the have not (‘not (‘a veneer of social competence’)a veneer of social competence’)

ExpressionExpression

The person with LD may have problems with:The person with LD may have problems with:

Unclear or no speechUnclear or no speech Being misunderstoodBeing misunderstood

Coping with changeCoping with change

The person with LD may have problems with:The person with LD may have problems with:

Coping with minor or major changes (busy wards, Coping with minor or major changes (busy wards, changing staff etc)changing staff etc)Coping when change is sudden (things being cancelled at Coping when change is sudden (things being cancelled at the last minute)the last minute)Coping when things don’t happen in the way or at the Coping when things don’t happen in the way or at the time they expect (being invited to an appointment at time they expect (being invited to an appointment at 1pm, but not being seen until 2pm)1pm, but not being seen until 2pm)

Criteria for LDCriteria for LD• In the UK the World Health Organisation’s

International Classification of Diseases (ICD) is used to define learning disability

• WHO define LD as ‘a state of arrested or incomplete development of mind’

Internationally three criteria are regarded as requiring to be met before a learning disability can be identified:

1. Intellectual impairment2. Social or adaptive dysfunction3. Early onset (before 18years)

Defining learning Defining learning disability (LD)disability (LD)

•A significantly reduced ability to understand new or A significantly reduced ability to understand new or complex information and learn new skills (also known complex information and learn new skills (also known as an impairment of intellectual functioning)as an impairment of intellectual functioning)

•A significantly reduced ability to cope independently A significantly reduced ability to cope independently (e.g. difficulties in communication, self care, (e.g. difficulties in communication, self care, household tasks, social skills, safety etc.)household tasks, social skills, safety etc.)

•Started before 18 years with a lasting effect on Started before 18 years with a lasting effect on developmentdevelopment Definition used by World Health Organisation and UK GovernmentDefinition used by World Health Organisation and UK Government

Criteria for LD: Criteria for LD: 1. Intellectual 1. Intellectual FunctioningFunctioning

Classification of the first criteria for LD is as follows: Classification of the first criteria for LD is as follows:

•Learning disabilities can be mild, moderate or severeLearning disabilities can be mild, moderate or severe•Mild LD(IQ between 50-70)Mild LD(IQ between 50-70) – the person can – the person can attain some skills required for independent living attain some skills required for independent living with the right supportwith the right support•Moderate LD(IQ between 35-49)Moderate LD(IQ between 35-49) - a difficulty - a difficulty developing skills without considerable supportdeveloping skills without considerable support•Severe LD(IQ between 20-34)Severe LD(IQ between 20-34) - requires a - requires a constant and consistent level of support in most constant and consistent level of support in most aspects of their livesaspects of their lives•Profound LD(IQ below 20)Profound LD(IQ below 20) - typically require - typically require intensive levels of support in all aspects of the livesintensive levels of support in all aspects of the lives

Group discussionGroup discussion

• In light of the formal criteria for LD just outlined what In light of the formal criteria for LD just outlined what do you NOW understand about learning disability?do you NOW understand about learning disability?

• Do you think you have worked mainly with people with Do you think you have worked mainly with people with learning learning disabilitydisability or learning or learning difficulties? difficulties?

Ask me anything! Ask me anything!

• What issues concern you most about working with a What issues concern you most about working with a person with LD in palliative care?person with LD in palliative care?

Working with people with learning Working with people with learning disability (pwld) in palliative care: disability (pwld) in palliative care:

FAQ’sFAQ’s

How do we get the conversation startedHow do we get the conversation started How do we manage challenging behaviourHow do we manage challenging behaviour How and when should I contact a learning disability How and when should I contact a learning disability

teamteam

How do I get the conversation started?How do I get the conversation started? A person with a learning disability is a A person with a learning disability is a person person first and foremost, don’t first and foremost, don’t

shout or patronise!shout or patronise! Pwld have varied interests, likes, dislikes, roles etc talk to them about thisPwld have varied interests, likes, dislikes, roles etc talk to them about this You may want to think about your tone of voice and your body language You may want to think about your tone of voice and your body language

and minimise asking leading questions as pwld can be highly suggestible and minimise asking leading questions as pwld can be highly suggestible and acquiescent and acquiescent

Find a good place to communicate – somewhere quiet without distractions

Be aware that pwld will typically be part of a wider network of family and carers who may typically speak on their behalf, always include the pwld in the conversation even if they have difficulty understanding

Think about how you describe who you are and your job – in my previous service we have symbols for each role and use photographs of ourselves in correspondence and when we meet the person

Avoid using jargon, the skill in LD is making the jargon accessible and understandable

How do I get the conversation started?How do I get the conversation started? Check with the person that you understand what they are saying – “it

hurts when you do this? Is that right Don’t underestimate the value of thumbs up or thumbs down! You will

need to be more observant and don't feel awkward if you cannot understand what the person says, or about asking family or carers for their help.

Try drawing – even if your drawing is not great it might still be helpful. Take your time, don't rush your communication. Use gestures and facial expressions. If you are asking if someone is

unhappy make your facial expression unhappy to reinforce what you are saying.

Be aware that some pwld find it easier to use real objects to communicate but photos, symbols and pictures can really help too.

Remember, all communication is meaningful, but you may need to work harder to understand.

How do we manage challenging behaviour (cb)How do we manage challenging behaviour (cb) Everyone has needs, many of which require the support of others to Everyone has needs, many of which require the support of others to

fulfill. Individuals with brain injury have the same needs as people fulfill. Individuals with brain injury have the same needs as people without brain injury; however the way they express those needs may without brain injury; however the way they express those needs may be differentbe different

Behaviour is a way of communicating our needs. CB may be the most Behaviour is a way of communicating our needs. CB may be the most effective way of a person communicating their needs at a particular effective way of a person communicating their needs at a particular time, it becomes reinforcing if it gets their needs mettime, it becomes reinforcing if it gets their needs met

CB is not unique to people with a learning disabilityCB is not unique to people with a learning disability

The consequences of exhibiting cb for people with learning disability The consequences of exhibiting cb for people with learning disability may be that they are at increased risk of inappropriate interventions, may be that they are at increased risk of inappropriate interventions, exclusion, or negative labelingexclusion, or negative labeling

What function does cb serve?What function does cb serve? Social attention – It is not Social attention – It is not bad bad to want attention from others, but for a to want attention from others, but for a

variety of reasons: limited communication skills, pain, boredom etc some variety of reasons: limited communication skills, pain, boredom etc some people may learn that behaving a particular way is a reliable way of people may learn that behaving a particular way is a reliable way of attracting attention from others, even if it is negativeattracting attention from others, even if it is negative

Tangibles – This is a desire for certain things, e.g. food, drink, objects, Tangibles – This is a desire for certain things, e.g. food, drink, objects, activities, that is providing the motivation for behaviour. Problems can activities, that is providing the motivation for behaviour. Problems can arise when an individual learns to act inappropriately to get these thingsarise when an individual learns to act inappropriately to get these things

Escape – Some people crave attention, but for others being left alone is Escape – Some people crave attention, but for others being left alone is the ideal. Rather than behaving in a way to the ideal. Rather than behaving in a way to getget attention the person may attention the person may behave in a way to avoid situationsbehave in a way to avoid situations

Sensory – Behaviour can also be Sensory – Behaviour can also be internally internally rewarding because of the rewarding because of the sensation or stimulatory effects. These behaviours may be distressing to sensation or stimulatory effects. These behaviours may be distressing to observers, but may be a positive coping strategy for the person who has observers, but may be a positive coping strategy for the person who has adopted itadopted it

Understanding the behaviour: being a detectiveUnderstanding the behaviour: being a detective Thinking with the team the ‘how, what, where and when’ of the client’s challenging

behaviour enables us to look at factors that might be:– Causing or triggering the behaviour – are there patterns to the behaviour?– Maintaining the behaviour – what is likely to be keeping this behaviour going– Making the behaviour worse or better – this may include time of day, specific

people, certain things people say or do etc Keep records of the behaviour – consider describing what happened, who was around

when the behaviour was exhibited, what you or others did to make the behaviour worse or better

What you think the person is trying to communicate when they display challenging behaviour – are they in pain, are they trying to avoid a situation, are the finding the environment too much etc

Once you have formulated the how, what, who and where you can look at developing a plan that tries to promote more positive behaviour – i.e. everyone in the team adopting the mode that has been identified as the one that reduces negative behaviour e.g. using the same instructions, being consistent

If this behaviour is displayed away from the hospital how is it managed by staff or family?

DO NOT underestimate the value of praise, consider how you will promote the behaviours you DO want to see

Understanding the behaviourUnderstanding the behaviour Assessment should serve three purposes: It should collect enough information to lead us to an idea of

what may be causing the client’s behaviour It should lead to the selection of a plan of action to manage

the client’s behaviour, which fits both them and their environment

It provides a useful way of measuring if there has been any change in the behaviour once a plan has been put in place

How and when should we contact the LD teamHow and when should we contact the LD team

George’s story….Getting a George’s story….Getting a diagnosisdiagnosis

George was a 63 year old man with a moderate learning disability. He lived in a supported care home with three other service users also with learning disabilities. George’s carers noticed that he was losing weight, seemed breathless at times and had a cough that was not responding to antibiotics and cough medicine. Not content with how George was, they had to raise their concerns with his GP, after a number of only ‘minor’ checks, they finally asked for a second opinion…….

•People with learning disabilities who may face a life-limiting illness do not seem to access the same services or receive the same quality of service as the rest of the population•They are likely to find it very difficult to articulate that something is not right

George’s story….Supported George’s story….Supported decision makingdecision making

Eventually, following tests George was found to have lung cancer. A decision was taken between George, medical professionals, his next of kin and his carers that it would be helpful for him to receive active treatment such as radiotherapy or chemotherapy. This was difficult however as he became very distressed with anything or anyone medical.

It is important to help the person understand what is happening to them at every stage. Liaison with the Community Learning Disability Team (CLDT) was essential at the early stages as they could provide support around•Helping George understand his diagnosis using accessible information in order to facilitate his ability to make capacitous decisions•This enabled George to make supported decisions around his health care and treatment

George’s story….Treatment George’s story….Treatment and hospital staysand hospital stays

Joint work between the Community Learning Disability Team and the Oncology Nurse helped George, staff and carers understand the impact of his treatment and signs of any changes, pain or distress. George did not often complain of pain and really only talked about his emotions in terms of being ‘happy’ or ‘sad’. The SALT and the team Psychologist met with the Nurse and adapted an information sheet for George and his carers, taking the key points and supporting this with visual information (symbols and photos). The psychologist and SALT also facilitated an Information Sharing session between carers, hospital staff and family. In addition advice was offered to the oncology nurse and MDT via George’s Communication Passport and Traffic Light System

•The Traffic Light System was developed in ABMU LHB - Red is the key information about the individual, such as any medication they are taking, allergies or medical conditions; Amber includes all the things that the staff should know about the patient. This includes the preferred way to communicate, such as words, symbols, signs or gestures. It also covers personal care and safety (e.g. triggers to challenging behaviour); -Green is the details that would make the stay in hospital more enjoyable - likes and dislikes such as food

George’s story….the illness George’s story….the illness progresses to terminalprogresses to terminal

George’s condition deteriorated and it was time to have discussions with George, his family and carers about end of life care. With the support of the CLDT the staff team and specialist nurse a ‘When I Die’ booklet was developed that included details about George, his wishes (where he wanted his funeral, whether he wanted to be cremated - George understood this as ‘going in the oven’ and this is what he wanted as he didn’t like slugs and snails to eat him in the coffin!), whom he wanted notified of his death, where he wanted his ashes scattered, to whom he wanted to leave his belongings too, hymns he wanted at his service, flowers, what he wanted to wear etc •It is important that people with a learning disability are included in discussions about their end of life care, medical professionals may not be aware of the myriad of resources that are available to support people with LD and their families

Useful references/resources that supported Useful references/resources that supported GeorgeGeorge

People with learning disabilities who were facing a life-limiting illness do not seem People with learning disabilities who were facing a life-limiting illness do not seem to access the same services or receive the same quality of service as the rest of the to access the same services or receive the same quality of service as the rest of the populationpopulation

People with learning disabilities who were facing a life-limiting illness do not seem People with learning disabilities who were facing a life-limiting illness do not seem to access the same services or receive the same quality of service as the rest of the to access the same services or receive the same quality of service as the rest of the populationpopulation

People with learning disabilities who were facing a life-limiting illness do not seem People with learning disabilities who were facing a life-limiting illness do not seem to access the same services or receive the same quality of service as the rest of the to access the same services or receive the same quality of service as the rest of the populationpopulation

Reflective practice…Reflective practice…

What one thing will you take away What one thing will you take away from today’s presentation?from today’s presentation?

[email protected]

Paediatric Oncology Paediatric Oncology Children's Hospital for Wales Children's Hospital for Wales Heath Park Heath Park Cardiff Cardiff CF14 4XW CF14 4XW Tel: 029 2074 8805 (Paediatric Oncology)Tel: 029 2074 8805 (Paediatric Oncology)Tel: 029 2074 2139 (Child Health Dept, Children’s Centre)Tel: 029 2074 2139 (Child Health Dept, Children’s Centre)