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Palliative Care Research in Kent and Medway


Kate Bosley Paediatric palliative care referral ... Keith Duffy Carer information needs. Maureen Griffen Pending palliative care patients ... – PowerPoint PPT presentation

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Title: Palliative Care Research in Kent and Medway

Palliative Care Research in Kent and Medway
  • Andrew Thorns
  • Consultant and Honorary Senior Lecturer
  • Pilgrims Hospice
  • East Kent NHS Trust
  • University of Kent

  • To describe the current situation and potential
    developments of palliative care research in Kent
  • To highlight the challenges in palliative care
    research both here and generally
  • To identify opportunities locally to promote
    palliative care research
  • To introduce and develop ideas of the best way to
    move forward

  • We dont do research here, were too busy
    looking after our patients

Critical Evidence Question
  • To what extent does evidence drive the delivery
    of interventions in your unit?
  • Can you name the last piece of research that
    influenced how you do things?
  • Can you clearly articulate the reasons why a
    certain practice is done a particular way on your

  • The drawbacks
  • Scepticism
  • Dangers of bias
  • Misinterpretation of bad research
  • Resource issue
  • Time and effort for patients
  • Culture of too much research
  • Missing the parachute
  • The benefits
  • Improve practice
  • Avoid assumptions
  • Educative role
  • Rigorous process
  • Systematic practice
  • Questioning approach
  • Exposes other questions
  • Meaning to illness
  • Contribution to society

Evidence Based Care
New evidence       Changed clinical
behaviour       Better patient care
Why Do We Need Research?
  • Research is essential to the successful
    promotion of health and well-being. Many of the
    key advances in the last century have depended on
    research, and health and social care
    professionals and the public they serve are
    increasingly looking to research for further
  • Lord Hunt of Kings Heath, writing in the
    introduction to the Research Governance Framework
    for Health and Social Care. Dept of Health.

  • Ignorance has risks, but they are largely unseen
    and unnoticed. Gaining knowledge has risks which
    are noticed, but largely unpredictable and it is
    very costly (though less so than prolonged
    ignorance). It focuses blame, where ignorance
    dispels it. So, maintaining ignorance often
    seems more attractive than gaining knowledge
  • Duncan Vere (1981) J Royal Soc Medicine.

Challenges in Research in Palliative Care
The Tyranny of Niceness
  • Assumptions
  • Good intentions are enough to produce good
  • Criticising practice equals criticising the
  • Hinders
  • Engagement in open critique about our work, the
    way we do it and the outcomes achieved
  • Open critique is the first step in developing a
    research culture
  • Prof Sanchia Aranda

The Tyranny of the Glowing Testimonial
  • Glowing reports from recipients of care
  • Compared to angels without wings
  • Reality
  • Patients have low expectations
  • Satisfaction strongly linked to perceptions of
  • Moves focus away from outcomes to satisfaction

Tyranny of the Warm Fuzzy
  • As humans we have an innate need to feel good
    about what we do
  • Praise from patients helps us gain this feeling
  • Critical examination of practice through research
    challenges this feeling

(No Transcript)
Challenges in Research in Palliative Care
  • Attrition patients die or become too poorly
  • Limited numbers available to study
  • Funding and insurance especially in charitable
  • Capacity of organisations to host research

Challenges in Research in Palliative Care
  • People only die once need to ensure dont
    worsen situation
  • Many diverse variables and stages in rapidly
    changing clinical, psychological, spiritual and
    social environments means standardisation is
  • Interest in variables beyond the measurable
  • Cultural influences of patient, family or
    palliative care team

Opportunities in Research in Palliative Care
  • To recognise that research does improve
    effectiveness and can become part of everyday
  • The units and the professionals who work there
  • Cooperation and collaboration between hospices
  • Department of Palliative and Supportive Care at
    the University of Kent
  • Joint academic post between University of Kent,
    Pilgrims Hospice and East Kent NHS Trust
  • The MSc students

Opportunities in Research in Palliative Care
  • The End of Life Care strategy
  • Research Development and Support Unit

Opportunities in Research in Palliative Care
  • Kent and Medway Comprehensive Local Research
  • CLRN will help with study costs when
  • Collaborative research
  • Funded from National competition
  • Good research question
  • Will help with some administration costs when
    getting research groups of the ground.
  • Will help with costings on projects before grants
  • Collaboration outside hospices e.g. non-cancer

End of Life Care Strategy
  • Social attitudes to death and dying
  • Attitudes to end of life amongst health and
    social care professionals
  • Demographics of dying especially non-cancer
  • Environments of care
  • Economics of end of life care
  • Prognostication
  • Advance care planning

End of Life Care Strategy
  • Communication about end of life issues
  • Changing cultures in health and social care
  • Education and training
  • Understanding current care provision
  • Support for carers (during a patients illness
    and in bereavement)
  • Effectiveness of different models of bereavement
  • Spiritual care
  • Care in the last days of life

Ex -KIMHS Medical Forum
  • Aims
  • Professional development
  • Education resource
  • Communication of issues
  • Pathway for information
  • Link with primary care
  • Ideas generating
  • Peer support
  • Service development
  • Evidence based guidelines
  • Assessment of novel interventions
  • Audit regional and local
  • Research
  • Achievements
  • Symptom control guide
  • Formulary
  • Input into MSc
  • Ix evidence on common palliative care treatments
  • Source of external CPD

Research in KM Current Position
  • MSc
  • Research skills module
  • Individual dissertations
  • Two PhD students
  • Annual research meeting
  • Individual efforts and projects
  • Collaboration with other university departments
  • Hosting projects from elsewhere

Completed Dissertations
  • Tricia Wilcocks OOH nursing
  • Linda Rendle bereavement risk assessment
  • Kate Bosley Paediatric palliative care referral
  • Sheila Rama spirituality in hospital practice
  • Pam Vale Taylor Rituals in bereavement
  • Bridget Withell Psychological needs of African
    AIDS affected adolescents
  • Hannie David Detection of depression
  • Lesley Marsh Adult abuse in palliative care
  • Karen Guest nurse prescribing in palliative
  • Jillian Wolesey Assessing physio input in
    palliative care
  • Dora Pappa Religious beliefs amongst Greek
    informal carers

Dissertations Underway
  • Jackie Hackett Spirituality assessment in
  • Keith Duffy Carer information needs
  • Maureen Griffen Pending palliative care
  • Siva Sivakumar Prognosticating in palliative
  • Theresa Rowlstone Sedation in hospices
  • Pauline Read Discharges home to die from
  • Julie Yates bereavement follow up in an acute
  • Corinne Koppenol Sexuality in paediatric
    palliative care patients

Research Governance
  • Guidelines to minimise risk to participants and
    improve research performance.
  • Consists of 5 domains
  • Ethics Dignity, rights, safety and well being of
  • Science Quality and appropriateness of research
  • Information The requirement for free access to
    research information
  • Health, safety and employment (staff and
  • Finance and intellectual property

What to do next?
  • Form a research interest group a forum for
    interdisciplinary collaboration
  • To identify local research opportunities
  • To identify shared areas of interest
  • To build links with the Research Development and
    Support Unit to design studies
  • To apply for funding
  • To watch for suitable portfolio studies to
    collaborate with
  • To collaborate with the CLRN to undertake
    clinical trials
  • To link with the Speciality Priority Group (SPIG)
    to inform local collaborative research

What to do next?
  • Consider starting with effective audit and
    observation of practice in an analytical manner
  • ? Regular meetings
  • ? email groups or message boards
  • ? Conference call
  • First meeting hopefully in March for all those
    who are interested

What to do next?
  • To join a consortium
  • CECO Cancer Experiences Collaborative
  • Complex interventions in supportive and
    palliative care development, evaluation and
    implementation (the COMPASS supportive and
    palliative care research collaborative)

What to do next?
  • All ideas welcome…

  • Complacency has no place
  • Palliative care in Kent and Medway needs to
    embrace evidence based practice as standard
  • Emphasis on building research capacity
  • Collective effort

Your thoughts?