Professional perspectives on
palliative care services for people
with dementia in England
Nathan Davies
Laura Maio
Dr Krish Vedavanam
Professor Jill Manthorpe
Professor Steve Iliffe
Overview
• What is IMPACT?
• Methodology
• Results
• Conclusions
What is IMPACT?
• IMplementation of quality indicators in PAlliative Care
sTudy – 2011 - 2015
•
•
•
•
•
Nijmegen, Holland
Bonn, Germany
Trondheim, Norway
Bologna, Italy
London, England
What are the current barriers that we
face today in providing palliative care
for people with dementia?
Method
• 21 structured interviews and one focus group
• Purposive sampling of national experts in policy,
service organisation, service delivery, patient
groups, and research in palliative care
• Snow balling methods
• Analysed using thematic analysis
Results
• 4 main themes:
– Ambivalence of systematisation
– Lack of integrated palliative care
– Need for training
– Spectrum of emotions – trust and risk
Ambivalence of systematisation
• Rules
• Structure
• Boundaries
• Flexibility
• Patient needs
Cont.
“might have spent the last 20 years living on their sofa, but
they’re not allowed to die on their sofa. Or if they do, they’re
not allowed carers because they can’t bend down to the sofa.
And I don’t know, it can be very frustrating sometimes”
Palliative Care Nurse
Lack of integrated palliative care
Currently
Desired
Health care
Specialist
Palliative
care
Generalist
Palliative
care
Social care
Community
teams
• Integrated teams
– Clear communication
– Awareness
– Clear roles
– Collaboration
– Relationships
Cont.
“a number of these admissions [to A&E], I think, the
last ten to fifteen years have almost doubled
because you guys [GP’s] are no longer being
integrated within that pathway and you’re no longer
seeing them at home before they leave”
Old Age Psychiatrist
Need for training
• Two types of training
• Pain assessment
• Syringe drivers
• Having difficult conversations
• Experience
• Knowledge
Acquisition of skills
Confidence
Skill Acquisition
“I would like to be prepared for setting up a syringe driver
really quickly and have a system in place for doing that,
which is something I’ve asked our local palliative care team if
they can provide direct training on that, so that it can happen
really quickly if the need arises, because I don’t know, I think
most of the time the need isn’t there, but I wouldn’t like to feel
uncomfortable about being a bit clumsy and slow about
setting it up”
General Practitioner
Confidence
“[…] there’s a lot, a huge amount of experience out there,
they just need a little bit of confidence to get past the first
hurdle and there will be a lot of good knowledge about, you
know, just basic approaches around dementia care”
General Practitioner
Spectrum of emotions – fear and trust
• Clinicians and other professionals are faced with
the fear of legal pursuit if something was to go
wrong or goes against the wishes of the families
• A need for trust in order to establish collaborative
working relationships and environments, but this
often lacking
– Among professionals
– Families with professionals
Fear
• “And a lot of staff are very frightened about doing
the wrong thing I think sometimes, they’re quite
frightened about families”
Palliative Care Nurse
Trust
“But I think more and more these days relatives
actually are more demanding and have higher
expectations and see people dying as a failure”
Care Home Manager
Conclusions
• Lessons from cancer care
– Structure is needed
– But not at the expense of flexibility
• Care Pathway is needed
• Inclusive working is needed but only available
from a structure
• Training doesn’t always mean ‘training’
Thank you!
Nathan.davies.10@ucl.ac.uk
www.impactpalliativecare.eu
Funding source: This research has received funding from the [European Union's] [European
Atomic Energy Community's] Seventh Framework Programme ([FP7/2007-2013] [FP7/20072011]) under grant agreement n°[258883] .
Disclaimer: The views expressed here are those of the authors and not of the European
Commission.