Models for the organisation of palliative care
for patients with cancer and dementia
Professor Steve Iliffe, Nathan Davies, Dr Mareeni Raymond
Dr Alex Warner & Laura Maio in Primary Care at UCL
Professor Sam Ahmedzai , Department of Oncology,
Sheffield University
Professor Jill Manthorpe, Social Care Workforce Research
Unit, Kings College London
Aim
To develop and test a tool to assess the quality
of palliative care:
• For cancer & dementia
• In different health care systems
• In different settings (home, care home,
hospital, hospice)
European centres
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Nijmegen, Holland
Bonn, Germany
Trondheim, Norway
Bologna, Italy
London, England
Methodology
Modelling palliative care for people with dementia
or with cancer (nominal groups, Delphi processes)
Developing quality indicator sets (technology
development, co-design)
Field testing QIs in primary care, care homes,
hospitals and hospices (before and after study)
Technology development & co-design 2
Rapid appraisal of the
literature
Research team reaches
consensus on key themes
for qualitative interviews
List of questions developed
and asked of subject
matter experts
Generic model discussed
with subject matter expert
groups to refine and
develop it further
Research team constructs
generic model of palliative
care
Review of national policies
in England, Germany, Italy,
the Netherlands & Norway
Modelling
• Detailed system description drawn up using subject
matter experts (SMEs)
• In policy, service organisation, service delivery, patient
groups, & research in palliative care
• Matrix of macro-, meso-,micro- level organisation
• In four settings: own home, care home, hospitals,
hospices
• Interviews & focus groups with SMEs
Kotiadis K, Robinson S Conceptual modelling: knowledge acquisition and model abstraction in Mason S, Hill R, Moench L, Rose O,
Jefferson T, Fowler J (eds) Proceedings of the 2008 Winter Simulation Conference 951-8
Kaulio, M. (1998) Customer, consumer and user involvement in product development: a framework and a review of selected
methods, Total Quality Management and Business Excellence 9(1) pp. 141-49
Technology development
& co-design 1
• Modified nominal group technique for illstructured problems to synthesise findings :
• Allow for disagreements over problem definition,
potential solutions that overlap or vary widely in
specificity.
• Generate ideas, confirm they are addressing the
same problem, analyse the content of the ideas,
categorise ideas and clarify the items in each
category
Bartunek JM & Murningham JK (1984) The nominal group technique: expanding the basic procedure and
underlying assumptions Group & Organisation Studies 1984;9(3): 417-432
Core themes of palliative care
1.
2.
3.
4.
5.
Division of labour
Structure & function of care planning
Managing rising risk and complexity
Boundaries
Process of bereavement
Basic model
for dementia
Professionals
Structured, iterative needs assessment & care planning, managing and monitoring
Comprehensive
Diagnosis and
Prognosis
Options of treatment/self-care
with shared decision making
Rising support needs
End-of-life care
Grief, Loss and Bereavement from family, professionals and person with dementia
Death
Quality indicators of good end-of-life care
and of “a good death” related to outcome
Professionals
Fidelity to prior and current
preferences, symptoms controlled,
family satisfaction, appropriate
setting (home or hospital),
psychosocial and spiritual needs
met
Structured, iterative needs assessment & care planning, managing and monitoring
Comprehensive
Diagnosis and
Prognosis
Options of treatment/self-care
with shared decision making
Rising support needs
End-of-life care
Death
Grief, Loss and Bereavement from family, professionals and person with dementia
Prior/current preferences established with carer
or family involvement.
UK example: Liverpool Care
Pathway
Quality indicators of good palliative care
related to process & structure
Evidence of care
coordination
Community orientation
Evidence of
increased skill
Professionals
Structured, iterative needs assessment & care planning, managing and monitoring
Comprehensive
Diagnosis and
Prognosis
Options of treatment/self-care
with shared decision making
Rising support needs
End-of-life care
Death
Grief, Loss and Bereavement from family, professionals and person with dementia
UK example: Gold Standard Framework in
operation; pain control: use of assessment tools,
psycho-social needs met; nutrition assessed, few
PEG/NG tubes used; Infection management agreed;
Prognostication tools used
Training and continuous
learning; audit of outcomes
Stable leadership &
workforce, staff skill mix
Full description
Iliffe S, Davies N, Vernooij-Dassen M, van Riet Paap J,
Sommerbakk R, Mariani E, Jaspers B, Radbruch L, Manthorpe J,
Maio L, Engels Y for the IMPACT research team
Modelling the landscape of palliative care for
people with dementia: a European mixed
methods study
Submitted to BMC Palliative Care April 2013
Field testing
• Modified Delphi process with SMEs to choose
a QI package
• Use QIs to identify strengths and weaknesses
in volunteer services
• Focus on correcting weaknesses
• Re-assess using QIs
Before & after study
In each country we are engaging with:
• Hospital wards
• Hospices
• Care Homes
• Community services (General practitioners)
to test QI packages
s.iliffe@ucl.ac.uk