ace committee caring together…. a carer's diary to improve communication and care during end...

ACE CommitteeACE Committee

Caring together….Caring together….a Carer's Diary a Carer's Diary to Improve Communication and Care to Improve Communication and Care

during End of Life Care.during End of Life Care.

Mel McEvoy, Edwin Pugh, John Blenkinsopp, James Andrew

16th September 2011


Overview Overview • The problem in practice• A good death• Research Methodology• Objectives of the research• Research Process• Results• Carers’ views• Conclusions


The problem in practiceThe problem in practice The experience of end of life care

leaves an impact on informal carers. Informal carers should have a role

that involves decision-making and their needs should be regularly addressed.

In acute trusts over half of complaints about care relate to care of the dying.

The End of Life Strategy (2008 )


The problem in practiceThe problem in practice Professionals lack skills and

competencies inability to recognise when someone is

dying, communicate inadequately uncertainty about how to deliver the best

care Complaints mainly: poor communication,

lack of basic comfort, privacy and psychological support.

Health care commission ‘Spotlight on Complaints’ (2007& 2008)


A good deathA good death

Being treated as an individual, with dignity and respect.

Being without pain and other symptoms.

Being in familiar surroundings. Being in the company of close family

and/or friends. The End of Life Strategy (2008, p9)


Research MethodologyResearch Methodology Action Research Develop a tool to address carers needs Captures the views and experience of

carers and clinical staff. Reviewed and validated by a focus

group of local carers who had relatives that had died within this Trust.

the wards and key workers were prepared in introducing the diary


Objectives of the researchObjectives of the research To develop engagement and collaborative

practice between health professionals and relatives/carers.

To empower relatives/carers to deal with specific perceived difficulties.

To better prepare and involve relatives/carers in end of life care.

To provide quantifiable data from a relative/carers’ perspective on the quality of care achieved in the last days of life.

To contribute to the effective delivery of the end of life pathway in an acute setting.


The diaryThe diary


Research ProcessResearch Process The diary was introduced to the carers of

dying patients on the Liverpool Care Pathway.

Trial period March to August 2010. Both hospitals and all wards. 631 patients died in this foundation trust 275 were placed on the LCP which is

43% of all deaths. Study assisted by R&D incentive fund.


Research ProcessResearch Process 60 carers completed the diary Ward staff were challenged by the task and were

uncertain about the process. Some patients died quickly before their relative

were asked. Some relatives refused to engage in the process

due to their emotional states. Some relatives took the diary home and didn’t

return it. Some patients didn’t have relatives or had

relatives that did not want to visit. The uptake of the diaries were assisted by the role

of the research nurses.


Carer’s diary databaseCarer’s diary database


Sympton Control Value by Ward ( as perceived by Carers )

0

2

4

6

8

10

12

Nu

mb

er o

f D

iarie

s c

om

ple

ted

Below 24/30

Above 25/30

Overview of wardsOverview of wards


Accumulated scores of all diaries as perceived by relatives

00.5

11.5

22.5

33.5

44.5

5

pain sickness calmness ease ofbreathing

Support andsensitive care

of pt

Support andsensitive care

of relative


ResultsResults 52% of the carers made additional

comments There were positive and negative

comments on aspects of care There were statements about personal loss

and bereavement. Suggests that carers felt confident and

sufficient trust to articulate in writing their views Assumption is that on wards the diary

helped clinical staff form better relationships


Content Analysis Content Analysis categoriescategories

1. Comments on diary usageD1. “We found it very useful to fill this diary. We

found It helpful at this difficult time. We did not

find it distressing at this very difficult time.”D2. “I found it quite helpful & not at all

distressing.” D5. “We found completing the diary was no

problem.” D7. “Easy to fill in. Helpful at a difficult time."


2. Comments on how it helpsD5.”Yes- helped us see the progression and

ease of the pain relief.” D8. “I found it helpful because it focused

my mind on the fact that he was comfortable and that gave me comfort.”

D20. “..became a part of the routine. It was helpful to have something to

record. Although the repetitive nature of the questions was sometimes off putting.”


3. Comments on issues in clinical practiceD51: “Two concerns when it was decided my

husband was for the pathway a nurse removed oxygen mask and took it from the room. Returned gave me the diary at the end of bed. I had to ask to go outside to discuss this as it was somewhat insensitive to speak in front of the pt.” D35: “I feel there should be a separate room to cover the needs of families who are waiting for loved one’s to pass away and feel it should be more private as it is a very personal matter and you don’t want visitors to see loved ones upset.”


4. Observations on careD5,6: “I feel if her meds had been topped up during the night she could have been pain free & anxious free all day. A lot more restful & settled than yesterday spoke to her doctor about agitation in the morning meds have since been reviewed. Not as settled today as the past two days. Was given medication which helped only after the 2nd dose was given. Breathing a bit easier.” D7: “mum’s nappy needed changing + she

needed to be repositioned in the bed after request / took 1 hour to attend.”


5.Expressions on thanks and appreciation

D9: “Thank you for all your help and support x.”

D17: “Thank you for the care and attention & for being so open with us. All seems to be well taken care of. Thank you.”

D28: “We don’t feel that the nursing staff at North Tees could have done any more than they have done.”

D42: “Nothing else. The staff are excellent very kind and caring. Thank you. My father agrees.”


6. Expressions of exceptional careD5, 6: “Total care 110%. You all went the

extra mile for Mam.” D29: “Everything has been exceptional.

Staff could have not done anything more than have done. Everything and everyone have been exceptional.”

D1: “We can not explain in words how we feel about the care and dedication of the doctors and staff on this ward. (ii) They have been our rock-our shoulder to cry on. And most important THEY CARE. Thank”


7. Personal expressions on death dying and bereavement

D2: “As a carer, for my mother for the last few years this has been an interesting experience and quite uplifting, (signed name).”

D7: “Very sad watching mum waiting to die and remembering her life as a young person.”

D18: “In these circumstances euthanasia should be legal.”

D7: “Mum has been well cared for today to the question could anything more be done answer no. Mum passed away peacefully 3 pm.”

D18:”Peaceful day with dad. Staff wonderful as ever. Very grateful. Dad died 10 pm very peacefully with his four daughters present (names omitted) God bless.”


FindingsFindings The diary promoted collaborative working and

improved communication. Carers raised issues and saw treatment altered. Individuals said the diary helped them see the

change. Provided a framework through which the

priorities of care could be seen such as symptom control and psychological support.

Carers were better prepared and involved in the dying process.

Possibly reduced trauma in bereavement. Some carers implied that engagement was

uplifting.


Who completes the Who completes the diaries?diaries?

5 completed by daughters4 completed by brothers4 completed by sons2 completed by husbands2 completed by cousins1 completed by sister1 completed by wife1 completed by niece


ConclusionConclusion

This research should be seen as contributing to addressing carers’ needs and a further step in ensuring a good death for patients and relatives. It compliments the focus that the Liverpool Care Pathway provides. It should be seen in the context of integrating the principles of palliative care in the acute hospital setting. The research is ongoing for another year.


Bereavement careBereavement care‘There is a range of evidence (Stephen et al 2006) that the way those who have been bereaved experience the events around the time of death will influence the trajectory of their grief journey. Where health services get it right, showing empathy and providing good quality care, bereaved people are supported to accept death, and move into the grieving process as a natural progression. Conversely if the health services get it wrong, then bereaved people may experience additional distress, and that distress will interfere with their successful transition through the grieving process, with implications for them, those around them and for the social economy of the nation.’

Shaping bereavement care a framework for action for bereavement care in NHSScotland (2011).


Any questions?Any questions?

Thanks should go to the frontline ward

staff who are meeting the emotional challenge of caring for families of dying patients in very busy environments.


ReferencesReferences• Shaping Bereavement Care a framework for action for

bereavement care in NHSScotland (2011)• Department of Health (2008).End of Life Care Strategy:

Promoting high quality care for all adults at the end of life. London:Department of Health.

• Healthcare Commission (2008) Spotlight on complaints-report on second stage complaints about NHS in England.

• Healthcare Commission (2007) Spotlight on complaints-report on second stage complaints about NHS in England.

• Stephen AL, Wimpenny P, Unwin R, Work F, Macduff c, Demoster p, Wilcock SE and Brown AM (2006) Bereavement and bereavement Care: consultation and mapping practice (phase 2) Aberdeen: Joanna Briggs Collaborating Center, The Robert Gordon University.

ace committee caring together…. a carer's diary to improve communication and care during end...

Documents

diary slide

ace committee research

ace committee objectives

end of life care

p9 slide

experience of carers

informal carers

quality of care