1. Examining
quality
of
end-­‐of-­‐life
care
from
the
perspec8ve
of
bereaved
rela8ves:
Development
and
valida8on
of
a
postal
ques8onnaire
framed
by
na8onal
standards.
Kathleen
McLoughlin1,
Mary
Lovegrove2,
Kieran
McKeown2
and
Andy
Cochrane1
1.
Department
of
Psychology,
Maynooth
University,
Maynooth,
Co.
Kildare
2.
The
Irish
Hospice
FoundaFon,
Nassau
Street,
Dublin
2.
Background:
High
quality
end-­‐of-­‐life
care
can
make
a
significant
difference
to
the
physical,
psychological
and
spiritual
outcomes
for
the
bereaved,
conversely,
when
care
is
poor,
it
can
have
a
detrimental
impact.
The
Office
of
the
Ombudsman
in
Ireland
recently
published
a
themaCc
collecCon
of
complaints
received
regarding
end
of
life
care
focusing
on
the
need
for
improvement
with
regard
to
communicaCon,
paCent
autonomy,
access
to
specialist
palliaCve
care,
support
for
families
and
friends,
post-­‐mortem
examinaCons,
returning
the
deceased
person’s
belongings
and
management
of
complaints.
These
elements
are
all
central
features
of
the
Quality
Standards
for
End
of
Life
Care
in
Hospitals
and
NaConal
Standards
mandated
by
the
Health
InformaCon
and
Quality
Authority
within
their
focus
on
improving
the
quality
of
care
for
people
generally
and
at
end
of
life.
In
Ireland,
there
is
no
agreed,
validated
tool
to
examine
the
quality
of
end-­‐of-­‐life
care
against
published
standards.
The
complexiCes
associated
with
evaluaCng
the
quality
of
care
from
a
dying
paCent’s
perspecCve
have
been
well
documented
internaConally
and
hearing
the
voice
of
bereaved
relaCves
is
considered
a
reasonable
proxy
and
an
important
component
of
a
quality
and
risk
approach.
In
2011/2
The
Hospice
Friendly
Hospitals
(HFH)
programme
and
the
HSE
PalliaCve
Care
Clinical
Programme
developed
a
pilot
NaConal
End
of
Life
Care
Audit
and
Review
System,
that
included
a
survey
of
bereaved
relaCves
intended
for
use
as
a
normal
part
of
the
quality
improvement
process
in
all
care
seVngs
where
people
die
in
Ireland.
Aim:
To
describe
the
process
used
to
develop
and
validate
a
survey
of
bereaved
relaCves
to
assess
the
quality
of
end
of
life
care
in
all
seVngs
where
people
die.
Design:
The
tool
was
developed
in
four
disCnct
phases
(Figure
1).
SeBng:
The
pilot
was
conducted
in
acute
hospitals
(n=4)
and
residenCal
care
services
for
older
people
(n=10).
Results:
CogniCve
tesCng
revealed
that
the
quesConnaire
was
considered
to
be
an
appropriate
length,
taking
on
average
20
minutes
to
complete.
All
parCcipants
were
able
to
complete
the
quesConnaire
and
did
not
find
it
burdensome
or
too
distressing.
ParCcipants
welcomed
the
survey
and
two
recommended
that
it
should
become
a
rouCne
part
of
service
delivery
following
the
death
of
a
person
in
a
healthcare
seVng.
Audit
mangers
reported
that
the
process
of
extracCng
the
bereaved
relaCves
contact
details,
checking
whether
they
could
be
contacted
with
both
the
clinical
team
and
local
complaints
management
personnel,
making
the
call
and
sending
out
documentaCon
was
a
very
Cme
consuming
process,
taking
approximately
45-­‐60
minutes
per
parCcipant.
Phone
calls
were
someCmes
difficult,
with
people
taking
the
opportunity
to
“tell
their
story”
over
the
telephone
and
in
a
small
number
of
cases,
people
refused
to
engage
in
the
study
but
gave
their
feedback
over
the
telephone.
It
was
suggested
that
clear,
robust
procedures
are
required
to
process
and
manage
the
feedback
given
over
the
phone
by
bereaved
relaCves
who
do
not
choose
to
engage
with
the
survey.
Of
the
120
bereaved
relaCves
who
were
invited
to
parCcipate
in
the
pilot
run,
59
(49.2%)
responded.
36
(61.0%)
were
recruited
via
an
acute
hospital
and
23
(39.0%)
from
a
residenCal
care
service
for
older
people.
There
was
generally
weak
levels
of
agreement
between
staff
and
relaCves
on
most
items
of
the
survey
with
weak
–
no
agreement
on
most
items
except
the
single
room.
Conclusions:
The
tool
is
the
first
instrument
to
specifically
assess
the
quality
of
end
of
life
care
against
naConal
standards
in
Ireland
and
has
demonstrated
both
acceptability
and
feasibility,
with
good
face
and
content
validity,
clarified
by
the
logical,
pragmaCc
approach
to
tesCng
adopted
in
this
study.
QualitaCve
findings
were
of
greatest
interest
to
staff
and
had
most
potenCal
to
drive
quality
improvement
locally.
The
significant
disagreement
in
findings
between
staff
and
bereaved
relaCves
is
interesCng
and
highlights
the
different
perspecCves
of
relaCves
and
staff
which
themselves
reflect
different
subjecCve
understandings
and
experiences
of
the
person
who
is
also
a
paCent
and
the
quality
of
care
delivered.
Whilst
evidence
suggests
that
proxies
can
reliably
report
on
the
quality
of
services,
and
on
observable
symptoms.
Agreement
is
usually
poorest
for
subjecCve
aspects
of
the
paCent's
experience,
such
as
pain,
anxiety
and
depression,
as
was
the
case
in
this
study.
These
differences
are
natural
and
inevitable
which
is
why
they
are
reflected
in
our
objecCve
measurements
of
quality.
For
that
reason,
these
differences
are
useful
in
the
assessment
of
quality
but
not
necessarily
useful
in
assessing
validity
and
reliability
of
the
tools
in
quesCon.
Further
studies
are
Phase 3: Wider Audience Review
Aim: To provide support for face and
content validity
!
Phase 4: Pilot with bereaved
relatives, Cognitive interviews,
comparison survey results with
staff review tool and audit
manager feedback Aim: To provide
support for face and content validity
and to examine reliability and
feasibility
Questionnaire circulated to the Specialist
Palliative Care Clinical Programme
(n=19). Feedback was invited and
collated. Amendments made as necessary
Questionnaire distributed using an agreed
procedure (n= 120). Response rate of
49.2% (59/120). Cognitive testing (n=2)
and cognitive interviews (n=3) conducted.
Findings from bereaved relatives survey
compared with findings from staff review
tool (n=53). Findings from audit managers
(n=10) regarding the process of
recruitment obtained from focus groups
(n=2).
Phase 1: Question Formulation
Aim: To generate potential questions
representing quality of end of life
care for the person and family
Phase 2: Expert Advisory
Committee Review
Aim: To achieve consensus regarding
which questions and domains to
include for the draft survey
Final Advisory Committee Meeting
Aim: Final review before wider use
and approval of alterations based on
pilot findings
Survey of Bereaved Relatives
Questions based on quality of care domains
in literature, outcome of the National End of
Life Audit 2008/9 and key areas in
published standards
An expert advisory group of 23 members
reviewed potential questions via email and
a meeting was called to achieve consensus
regarding content, and wording of
questions.
Draft Questionnaire Developed
Expert advisory committee meeting to
agree final version of questionnaire for
inclusion in the National End of Life Audit
and Review System after incorporation of
changes from the pilot with opportunity for
review and comment.