This document describes a study that used Appreciative Inquiry (AI) to promote collaborative working between care home staff and healthcare practitioners in end-of-life care. The study found that care home and primary care staff expressed uncertainty in providing end-of-life care for older adults with dementia and had few opportunities for collaborative working. The AI intervention involved three meetings in three care homes to share stories of excellent collaborative care, develop shared goals, and create tools to support end-of-life discussions and care. The process enabled participants to develop scripts for discussing end-of-life wishes and a tool for discussions with out-of-hours services.

1.
Working
apprecia-vely
in
end-­‐of-­‐life
care:
An
interven-on
to
promote
collabora-ve
working
between
care
home
staff
and
health
care
prac--oners
1Caroline
Nicholson,
2
Elspeth
Mathie,
Sarah
Amador,
Ina
Machen,
Claire
Goodman
(PI)
1.Na&onal
Nursing
Research
Unit,
Florence
Nigh&ngale
School
of
Nursing
and
Midwifery,
King’s
College
London.
2.
Centre
for
Research
in
Primary
and
Community
Care
(CRIPACC),
University
of
HerJordshire

2. AI
and
Dying
“You
maNer
because
you
are
you.
You
maNer
to
the
last
Images of the future guide us
moment
of
your
life,
and
we
What are our strongest images
will
do
all
we
can
not
only
to
of old age?
help
you
die
peacefully
but
to
live
un&l
you
die.
(Cecily
Saunders)
• Excep&onality
• Essen&ality
• Equality
2

3. Connec-ng
across
Systems
Care
Homes
in
the
U.K.
are
home
to
over
half
a
million
older
people
They
are
oOen
seen
as
islands
of
the
old
Most
care
is
provided
by
care
staff
who
receive
liPle
training,
financial
payment
or
recogni-on
for
their
work
Dying
in
care
homes
is
seen
as
a
problem
to
be
fixed
by
the
medical
and
nursing
profession
:
the
answer
is
seen
as
providing
training
to
care
homes
Doing
to
rather
than
with
The
extraordinary
in
the
ordinary
:
being
with
older
people
who
bodies
and
minds
are
fragmen-ng

4. Living
and
dying
in
care
homes
• Median
life
expectancy
of
an
older
person
admiNed
to
a
care
home
that
offers
personal
care
2-­‐3
years
and
1-­‐2
years
in
care
home
with
nursing
• 30%
of
care
home
popula&on
have
advanced
demen&a
(70%
symptoms
consistent
with
demen&a)
• Dying
with
demen&a
is
an
uncertain
paNern
and
difficult
to
predict
• Care
homes
rely
on
primary
care
for
end-­‐of-­‐life
(eol)
support
and
access
to
specialist
services
who
come
in
when
they
know
someone
is
dying

5. EVIDEM
eol:
2
phased
mixed
method
Study
Phase
1
:
To
understand
the
need
for
support
and
eol
care
of
older
people
with
demen-a
living
in
care
homes
– Tracked
care
of
133
people
with
demen&a
in
6
care
homes
over
18
months
– Found
that
even
with
access
to
eol
tools
and
specialist
support
care
home
and
primary
care
staff:
Expressed
uncertainty
when
providing
eol
care
:
(uncertanity
=less
trust,
more
conflict)
Had
few
opportuni&es
for
collabora&ve
working
Phase
2
:
To
pilot
a
co-­‐design
approach
(
Apprecia-ve
Inquiry)
to
support
eol
care
of
older
people
with
demen-a
living
in
care
homes
5

6. Star&ng
where
people
are:
taking
AI
into
the
care
homes
3
care
homes
Par-cipants:
Each
mee-ng
one
hour
Care
staff,
visi-ng
3
hours
in
total
in
each
physician
and
nurse
home
Meeting
2
Positive
Development
of
• Stories
of
excellence
around
joint
Practice
• Sustaining
and
expanding
circles
working
in
EOL
care
for
residents
of
dialogue
• Generous
Listening
&
with
dementia;
development
of
interventions
• What
small
things
can
we
do
to
• Being
together
and
valuing
each
from
post
-­‐death
case
reviews
spread
the
changes?
others
roles
• Who
else
needs
to
be
involved?
• Seeing
the
world
from
another's
• Shared
goals
of
future
EOl
care
point
of
view
• Stories
of
the
process
from
for
residents
with
dementia
• Working
out
next
steps
around
different
perpectives
speciHic
interventions
Meeting
1
Meeting
3
Appreciation/Stories
Sustaining
Change
6
months

7. Process
enabled
par&cipants
to
develop
tools
to
support
Eol
care:
A
script
for
discussing
EOL
wishes
with
rela-ves..
“Some
people
have
very
definite
views
about
how
they
want
to
be
carried
for
at
end
of
life
and
others
do
not
want
to
think
about
it.
We
understand
everyone
is
an
individual.”
A
tool
to
support
discussions
with
out
of
hours
services..
In
thinking
about
the
resident…
•
What
are
the
capaci@es
of
the
resident
before
this
event?
•
What
are
they
usually
like?
•
How
has
the
problem
altered/what
they
are
normally
like?”
A
GP
led
implementa-on
and
audit
of
advance
care
planning
(DNACPR)

8. EVALUATION
-­‐
What
changed?
thema&c
analysis
of
interviews
with
par&cipants,
aier
death
analysis
collected
data
on
hospital
associated
use
Compared
with
Phase
One
evidence:
• Decrease
in
unplanned
hospitalisa&ons
(45%
reduc&on
in
hospital
costs)
• Increased
engagement
of
care
home
staff
with
residents
and
family
about
Eol
issues
(16%
increase
in
Care
home
staff
involvement)
• GPs,
care
staff,
rela&ves
and
residents
now
mee&ng
together
• Increase
in
Advanced
Care
Plans
and
DNACPR
Forms
• Cost
neutral
for
primary
care
involvement
across
the
3
care
homes
Increased Share goals/vision “singing off the same song sheet” (DN)
Increased Reassurance/support “I found them [care staff] reassuring presence.
Increased Trust/mutual respect “I know that the doctor was dealing with it
and he will back me up”

9. Working
Together
“The
communica@on
with
XX
is
no
longer
doctor-­‐carer,
‘you
do
this,
I’ll
do
that’,
but
it’s
more
I
think
there’s
an
improved
confidence
with
the
staff
to
be
able
to
say,
‘doctor,
we’re
concerned
that
this
pa@ent
is
deteriora@ng,
what
do
you
think
we
should
do?
..........the
staff
spoke
to
the
pa@ent,
the
family
got
the
impression
that
‘this
is
just
one
body
talking
to
me,
rather
than
a
carer
and
a
doctor’
–
basically
just
resona@ng
that
we
think
the
same.
Which
is
good,
because
you’ve
got
somebody
who’s
not
medically
trained,
giving
reassurance
and
the
doctor’s
also
offering
advice,
.......so
that’s
what
I’m
sort
of
saying
about
working
with
the
staff.
The
communica6on,
the
confidence
about
approaching
people’s
lives,
to
me,
has
improved”
(GP)

10. “Yeah
I
think
so.
It
was
really
helpful,
wasn’t
it,
mee&ng
the
District
Nurse
and
GP,
and
making
us
work
more
as
a
team.
It
helped
us
know
what
we’re
en6tled
to
in
regards
to
help,
and
they
realised
where
they
can
help
us.
We
can
be
quite
independent
as
the
care-­‐provider,
knowing
there’s
that
extra
support,
and
since
having
those
mee&ngs,
we’re
totally
different
to
before.
Staff
felt
a
liPle
bit
more
in
control
I
think,
and
they’re
not
so
panicked.
It
was
much
beNer”
(Exit
interview
with
Manager
and
Deputy
Manager)

11. Working
together:
NHS
and
Care
Staff
• Care
staff
and
GP,
DNs
and
care
staff
working
together
planning
EOL
with
rela&ves
and
residents
• Care
staff
asked
DNs
for
support
when
someone
was
dying
in
care
home
“x
was
in
her
own
bed
and
peacefully
slipped
away
while
the
District
Nurse
was
in
aSendance”
• Care
staff
asked
DNs
for
advice
and
were
told
not
to
turn
resident
(something
they
would
not
have
known)
• Staff
were
reassured
to
have
DN’s
medical
advice
before
phoning
the
family
“this
was
fantas@c
because
we
felt
the
burden
was
completely
taken
off
us,
I
didn’t
have
to
make
that
decision,
of
shall
I
call
the
family”

12. Conclusions
• Apprecia&ve
inquiry
enabled
staff
to
acknowledge
the
posi-ve
work
carried
out
by
residen&al
care
homes
to
manage
PWD
at
EOL
with
no
clinician
on-­‐site
(avoids
a
deficit
model
of
care
especially
in
demen&a
research)
• A
modified
Ai
’
is
achievable
and
could
be
incorporated
into
the
working
paNerns
of
par&cipants
• AI
supported
a
shiO
in
care
home
culture
and
established
paPerns
of
working
with
primary
care
services
that
could
mi6gate
uncertain-es
inherent
to
end-­‐of-­‐life
care
of
older
people
with
demen-a

13. Challenges
• Phase
2
involved
three
care
homes
• Fluctua&ng
aNendance
at
mee&ngs
• Tension
between
immediate
system
concerns
of
the
staff
and
the
needs
of
the
research
to
be
seen
to
be
making
a
difference
to
pa&ent
care
• Resident
and
rela&ve
voice
limited
• Connec&ng
between
mee&ngs

14. Reflec&ons
Suppor-ng
and
mi-ga-ng
the
inherent
uncertainty
in
providing
Eol
care
for
residents
in
care
homes
through:
• Crea-ng
a
shared
language
• Allowing
both
Knowing
AND
not
knowing
• Intelligent
Kindness

15. Reflec&ons
:
Intelligent
Kindness
• Kin
ness,
Our
common
des-ny
Connectednes
• A
Virtuous
Circle
• A
gentler
and
more
thoughul
engagement
with
the
experience
of
those
we
care
with
and
care
for
• The
possibility
of
crea-ng
connec-ons

16. “The
difference
between
ordinary
and
extraordinary
is
a
ques6on
of
recogni6on
Many
thanks
to
care
staff,
NHS
staff
who
gave
up
their
-me
to
take
part
in
this
research
Anne
Radford
giOed
AI
coach!
This
presenta@on
presents
independent
research
commissioned
by
the
Na@onal
Ins@tute
for
Health
Research
(NIHR)
under
its
Programme
Grants
for
Applied
Research
scheme
(RP-­‐PG-­‐0606-­‐1005).
The
views
expressed
in
this
publica@on
are
those
of
the
author(s)
and
not
necessarily
those
of
the
NHS,
the
NIHR
or
the
Department
of
Health.’
EVIDEM: EVIDENCE-BASED INTERVENTIONS IN DEMENTIA
Changing practice in dementia care in the community: developing and testing interventions
from early recognition to end of life, 2007-2012
National Institute for Health Research: Programme Grant for Applied Research (RP-PG-0606-1005)
Hosted by Central & North West NHS Foundation Trust
16
Caroline.nicholson@kcl.ac.uk