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Caring together


Caring together .a Carer's Diary to Improve Communication and Care during End of Life Care. Mel McEvoy, Edwin Pugh, John Blenkinsopp, James Andrew – PowerPoint PPT presentation

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Title: Caring together

Caring together.a Carer's Diary to Improve
Communication and Care during End of Life Care.
  • Mel McEvoy, Edwin Pugh, John Blenkinsopp, James
  • 16th September 2011

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

The 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 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
  • Health care commission Spotlight on
    Complaints (2007 2008)

A 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
  • The End of Life Strategy (2008, p9)

Research 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 research
  • To develop engagement and collaborative
    practice between health professionals and
  • 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 diary
Research 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
  • Study assisted by RD incentive fund.

Research 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 didnt
    return it.
  • Some patients didnt 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.

Carers diary database
Overview of wards
(No Transcript)
  • 52 of the carers made additional comments
  • There were positive and negative comments on
    aspects of care
  • There were statements about personal loss and
  • Suggests that carers felt confident and
    sufficient trust to articulate in writing their
  • Assumption is that on wards the diary helped
    clinical staff form better relationships

Content Analysis categories
  • 1. Comments on diary usage
  • D1. We found it very useful to fill this diary.
  • found It helpful at this difficult time. We did
  • find it distressing at this very difficult
  • D2. I found it quite helpful not at all
  • D5. We found completing the diary was no
  • D7. Easy to fill in. Helpful at a difficult

  • 2. Comments on how it helps
  • D5.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 practice
  • D51 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 ones to pass away and feel it should be
    more private as it is a very personal matter and
    you dont want visitors to see loved ones

  • 4. Observations on care
  • D5,6 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
  • D7 mums 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 dont 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 care
  • D5, 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
  • 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
  • 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
  • D7 Mum has been well cared for today to the
    question could anything more be done answer no.
    Mum passed away peacefully 3 pm.
  • D18Peaceful day with dad. Staff wonderful as
    ever. Very grateful. Dad died 10 pm very
    peacefully with his four daughters present (names
    omitted) God bless.

  • The diary promoted collaborative working and
    improved communication.
  • Carers raised issues and saw treatment altered.
  • Individuals said the diary helped them see the
  • 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 diaries?
  • 5 completed by daughters
  • 4 completed by brothers
  • 4 completed by sons
  • 2 completed by husbands
  • 2 completed by cousins
  • 1 completed by sister
  • 1 completed by wife
  • 1 completed by niece

  • 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 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?
  • 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.

  • 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. LondonDepartment of
  • 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