Scoping Exercise of Education and Training in End of Life Care

Joy DuxburyTerri O'Brien

Helen EllisSue YatesKay Sheik

David PulsfordMary Matthiesen

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Aims of the carers and patient focus groups End of Life Care Pathway Recruitment process Carers focus groups demographics and

discussion topics Carers’ groups: emergent themes Patient focus group sample and emergent

themes Conclusions: Implications of the findings

Overview of presentation

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To find out family carers and patients experiences of end of life care

 To identify their views on education and training provision for Health and Social care staff in End of life care

To identify any gaps and make recommendations for education and training requirements

Aims

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Focus Group Recruitment Process

General press release – October 2010

Press release Cumbria - January 2011

Invited presentations

End of life care leads

Hospice contacts

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Patient/family carer recruitment leaflet

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Number of carers focus groups held

Number of carers

People cared for Range of illness of people cared for

4 15Mother - 2Husband - 4Partner - 1Father - 2Father-in-law -1Daughter - 1 Son - 1Husband and daughter -1Mother and father - 2

Dementia - 3Cancer - 4COPD -1Heart failure - 1MS and diabetes - 1Brain tumour - 1 Genetic disorder -2Dementia and Strokes - 1Stroke - 1

Carer focus group demographics Table 1

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Age range of carers

Carers’ ethnicity

Carers’ sex

Past or present carers

Geographic area where those cared for received care

20 -29 x 140- 49 x 550- 59 x 460 -69 x 370 -79 x 180 -89 x 1

All white English

14 female1 male

10 past carers5 current carers

Cumbria - 4Lancashire - 7Wirral -1Lancashire & Manchester - 1Cumbria, Manchester & Oxford - 1Leeds - 1

Carers focus groups demographics Table 2

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Overall experience of care Communication skills Assessment of the persons needs and

preferences. Assessment of the family carers needs Advance care planning and preferred

priorities of care Care in the last few days of life Areas for improved training and education

Topics covered in the carers and patient focus groups

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Communication difficulties Lack of clarity about assessment Coordination of care Information Staff attitudes and values Environment Symptom control Training and education

Carers groups – emergent themes

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Importance of feeling listened too

You were very careful that you picked the right moment and the right member of staff to approach with any concerns to feel that you would be listened to. CarerG3

Written communication between staff

‘They didn’t know she had dementia, they didn’t have the notes, they didn’t know she was on the end of life plan. CarerG1

Communication

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Difficulty knowing what help is available, no central point of information

I’ve found it’s hard to find out what is actually available ..., there’s no one body to go to, everybody directs you to a different place, you spend an awful lot of time and energy trying to just find out what is out there, ... and you’re very emotionally upset and you’ve got [their illness] to cope with, and then finances all start going pear shaped …. CarerG4.

Information 1

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If you could have a booklet or a leaflet that brought all these things together, like wheelchairs’ CarerG1

I wish I’d known a little bit more about the Alzheimer’s, ... to have been able to help him more and understand better.  CarerG3

Where to get information, where to get help... my local hospice was brilliant CarerG2

Information 2

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End of life care plan wishes ignored She ended up in hospital because the worker phoned an

ambulance . CarerG1.

Assessment: Initial carer’s assessment, but no follow up review

When we first got carers in the social worker was very good and she said what you can have etc., but they don’t come back and revise it . CarerG4.

Problems with the assessment process There needs to be clarity on the expectation of what the

assessment’s about, how we can help you, do you feel you’re getting the full support, that type of specific focus. CarerG4.

Training

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The district nurse listened but they couldn’t always put it in place...There wasn’t oxygen [at home] so he ended up in hospital. CarerG1

Different staff every time, don’t know the patient very well.

The day to day carers come from the same agency but they’re not always the same people. They’ll have had a briefing ... but some of them don’t know him. CarerLG4

Coordination of care

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Lack of holistic care

Stop being like a baker in a cake shop because they don’t see the cakes anymore... the health professional needs to see the patient, the person. It’s just personalisation isn’t it? CarerG1

Staff attitudes and values 1

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Doing a task but not engaging with the patient. 

People should realise that it’s not just washing their feet and combing their hair, it’s the social interaction not just care of a person’s body. CarerG2

[The nurse] was doing their nails, and all the time she was either watching the television or talking to another carer and not talking to the person who’s nails she was doing. CarerG3

Staff attitudes and values 2

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Going the extra mile

She will do something which is probably outside her remit, for instance, when the light bulb went she went upstairs and found something suitable, a lamp, and put it in his room, and let us know, ... which I don’t think the others [carers] would have done. Carer4.

[A male carer] who used to go and buy razor blades out of his own money.. ...to shave the fellas, if there was none. Carer3

Staff attitudes and values 3

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Number of patient focus groups held

Number of patients

Age range

sex Type of Illness

NorthwestHome address

1 4 Between 45 -70

1 male3 female

All in advanced stage of cancer

All live in Lancashire

Patients focus group demographics Table 1

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Core theme Sub theme Key quotation

Communication Use of terminology Lack of communication/ information at diagnosis GPs and consultant communication- need more training

‘End of life ‘ too final and ‘shocking’ to some. Difficult to talk about and come to terms with’ ‘Don’t think about EOL, just get on with it’ ‘Left floundering’ at diagnosis’

‘Poor bedside manner’

‘Got more human as time has gone on’ ‘You’ve got to ask the right questions, otherwise there’s no answer ‘

‘He (consultant) wouldn’t tell me the stage of my cancer...said I didn’t need to know’

Patient focus group themes: Communication

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Core theme Sub theme Key quotation

Coordination of care Problems with Social Services and coordination across different areas Would like to have one key person to coordinate care Out of hours service patchy but reassurance badly needed sometimes during the night

‘Everything is in isolation. It all needs joining up’

‘You need to know what to ask for’

‘ You have to explain everything again to each different person’

Coordination of care

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Core theme Sub theme Key quotation

Training Help with benefit forms is lacking – Age UK / Citizens Advice helpful Preferred Priorities of Care document GPs communication training. Need to listen

‘There’s no other support, nothing about benefits and the forms are frightening’

‘Only heard about it through another patient’

‘No-one asked me what I wanted’ ‘Never enough information’

Training

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Experiences of mixed care by focus group participants

More work on training and education particularly for generalist staff

More focus on ‘joined up working’ within, and between, organisations

Continue to monitor practice to evaluate how far policy is being implemented

Conclusions

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