Palliative Care Research in Kent and Medway

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Palliative Care Research in Kent and Medway

• Andrew Thorns
• Consultant and Honorary Senior Lecturer
• Pilgrims Hospice
• East Kent NHS Trust
• University of Kent

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Aims

• 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

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

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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
  unit?

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Research

• 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

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Evidence Based Care
New evidence       Changed clinical
behaviour       Better patient care
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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
  improvements
• Lord Hunt of Kings Heath, writing in the
  introduction to the Research Governance Framework
  for Health and Social Care. Dept of Health.

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• 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.

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Challenges in Research in Palliative Care
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The Tyranny of Niceness

• Assumptions
• Good intentions are enough to produce good
  outcomes
• Criticising practice equals criticising the
  person
• 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

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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
  niceness
• Moves focus away from outcomes to satisfaction

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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

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Challenges in Research in Palliative Care

• Attrition patients die or become too poorly
• Limited numbers available to study
• Funding and insurance especially in charitable
  organisations
• Capacity of organisations to host research

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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
  impossible
• Interest in variables beyond the measurable
• Cultural influences of patient, family or
  palliative care team

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Opportunities in Research in Palliative Care

• To recognise that research does improve
  effectiveness and can become part of everyday
  practice
• 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

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Opportunities in Research in Palliative Care

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

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Opportunities in Research in Palliative Care

• Kent and Medway Comprehensive Local Research
  Network
• 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
  awarded.
• Collaboration outside hospices e.g. non-cancer
  charities

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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

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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
  care
• Spiritual care
• Care in the last days of life

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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

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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

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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
  practice
• Karen Guest nurse prescribing in palliative
  care
• Jillian Wolesey Assessing physio input in
  palliative care
• Dora Pappa Religious beliefs amongst Greek
  informal carers

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Dissertations Underway

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

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Research Governance

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

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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

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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

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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)

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What to do next?

• All ideas welcome

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Conclusion

• 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

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Your thoughts?