the hospice friendly hospitals programme · 3 oveview 2007-2013 1 background, context and overview...
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The Hospice Friendly Hospitals Programme
Overview 2007-2013
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E This report describes how care for people who die in Irish hospitals is planned and provided for; and how those processes evolved over the period 2007-2013. The report details a journey and we do not claim to have reached journey’s end. The ‘Hospice Friendly Hospitals’ (HFH) programme, as an aspiration or an idea, meets with very little resistance. Its aim - to transform the culture of hospital care for dying patients is a shared and transparent aim which we believe has now made its way into Irish discourse. While the aim may be agreeable, the means for change are not so straightforward.
Culture change is not simple; the very founding premis being that those who are a part of and members of a particular culture are often the last to see what is good, and what is not so good about a system. Rather people carry on doing these good things and not so good things as they represent ‘the way things are done around here’. Culture is a powerful maintenance mechanism precisely because of its shared and unquestioned beliefs and values.
HFH set out to introduce newer ways of doing things, to (re)introduce core values, to question and unsettle some of the assumptions and to provide support, tools and forums. As an example, in her introduction to the HFH standards President Mary McALeese gave us a vision of a ‘care-full death’.
We believe a narrative approach is crucial to communicate and record some of the complexity of this type of programme. The authors of the HFH narrative, Graham and Clark, were able to trace the programme’s development in real time, attending meetings, listening to discussions and talking with people about the past, the present and the future. This report reflects that depth of familiarity.
Projects are planned in one time (now the past) and unfold in another. If the past is indeed another country we believe it is important to have a map of that terrain. Consequently, in addition to the story of HFH we have commissioned a review of the activities, outputs and outcomes associated with the programme as it developed across hospitals; and of the resources that were developed to fuel it. This second report – the Walsh report represents this map and details what remains to be built upon if end of life care in our hospitals is to reach the excellent heights we desire.
The time through which the HFH journey has evolved has been one of exceptional societal, economic and structural change in Ireland. Much has been said and written on the straightened situation of our health services. The impact on staff should not be underestimated and it is a tribute to their commitment that so many maintained end of life committees in their hospitals, engaged in audits, attended network meetings and somehow managed to get released for training. A negative impact on patients and their families cannot, however, be tolerated and I state again our mantra that there ‘is only one chance to get it right’.
The Hospice Friendly Hospitals movement may never have a definitive end, we consider that a good thing. Core to the programme is questioning, review and change with a balance of head and heart. The Irish Hospice Foundation continues to support networks and activities in order to maintain a HFH ethos in Ireland. We support through financial contribution and harnessing the strong partnerships we have developed with health service providers. A very crucial ongoing support is provided by IHF through the experience and dedication of core HFH programme staff. Denis Doherty , Chair, Evalutaion Advisory Group, Hospice Friendly Hospitals Programme Author: Dr Kathy Walsh ISBN: 978-0-9566590-7-1
Foreword
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0131 Background, Context and Overview 4
1.1 Report Purpose 4
1.2 Dying and Death in Ireland 4 1.3 The Irish Hospice Foundation 5 1.4 The Hospice Friendly Hospitals Programme 5 1.5 HFH Programme Governance and Staffing 7
2 Review of Activities, Outputs and Outcomes 9 2.1 Introduction 9 2.2 Standards and Audit 10 2.3 Culture Change 16 2.4 Capacity Development 22 2.5 Influencing the System 30 2.6 Overall Achievements 36
3 Key Learning and Next Steps 38 3.1 Key Learning Overview 38
3.2 Sharing the Vision 38 3.3 Governance and Management 39 3.4 Engagement 40 3.5 Key Drivers 41 3.6 Tools Generated 42
Bibliography 43
Contents
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E 1. Background, Context and Overview
1.1 Report Purpose The purpose of this report1 is to provide an objective identification and discussion of the outputs and outcomes of the Hospice Friendly Hospitals (HFH) Programme over the period 1st April 2007 to 30th April 2013. It also assesses the extent to which the Programme has achieved what it set out to achieve, as well as the learning that has emerged to date.
1.2 Dying and Death in Ireland
In Ireland, there has been a long-term trend towards the hospitalisation of people who are dying (Figure 1.1). Over 29,0002 people die every year, and‘68% of these deaths occur in hospitals and long-term care settings’3.
Figure 1.1 Trends for the hospitalisation of people who are dying (1885-2005)
This means that end-of-life care and other issues associated with dying, death and bereavement are very relevant to all hospitals, acute and community.
International research suggests that not only does good end-of-life care impact positively on patients and their families, it also has the potential to reduce costs4.
1 This report was compiled based on an analysis of secondary data detailed in the bibliography. It was over-seen by the HFH Evaluation Project Advisory Group.
2 CS0, (2011) Principal CSO Statistics – Number of Births, Deaths and Marriages.3 McKeown, K. (2012). Key Performance Indicators for End-of-Life Care: A Review of Data on Place of Care
and Place of Death in Ireland, Dublin: Irish Hospice Foundation 4 National Audit Office (2008) End-of-Life Care. Report by the Comptroller and Auditor General, HC 1043
Session 2007-2008 (London)
‘Nobody should die alone, frightened and in pain. A good death in hospital is possible. Our challenge is to make it happen’.
HFH News, May 2010
‘In a National Survey 67% of Irish people indicated that they would like to die at home.
Weafer and Associates,
2004: p10-11
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0131.2 The Irish Hospice Foundation (IHF)
The Irish Hospice Foundation is a national charity whose mission is to achieve dignity and comfort for all people facing the end of life in Ireland. Its vision is that no one should face death or bereavement without the appropriate care and support they need.
As a development organisation concerned with all issues related to dying, death and bereavement, the Foundation’s concerns about dying in hospitals can be traced back to the mid-1990s.
An IHF-funded exploratory project undertaken in St. James’s Hospital, Dublin, in 1999 led to a planning document on end-of-life care prepared by the Royal College of Surgeons in Ireland. This in turn generated a joint IHF/Health Service Executive (HSE) pilot project (2004-2006) at Our Lady of Lourdes Hospital, Drogheda, which looked to develop a systematic approach to changing the culture of care and organisation around dying, death and bereavement in hospitals. This project generated significant learning and confirmed the feasibility and value of initiating a national programme to improve end-of-life care in hospitals.
1.3 The Hospice Friendly Hospitals (HFH) Programme
1.3.1 Background Formal planning for the development of a national programme to instil hospice principles into hospital care for the dying got under way in 2006, with the support of Atlantic Philanthropies (AP). Some 50% of acute hospitals expressed an interest in participating, as did a significant number of non-acute community hospitals and care facilities for older people.
Following a successful application to AP for funding, the €10m project was officially launched by President Mary McAleese in May 2007 as the Hospice Friendly Hospitals Programme, a five-year initiative of the IHF in partnership with the HSE. With 50% funding from Atlantic Philanthropies, it also received financial support from the Dormant Accounts Fund and the Health Services National Partnership Forum, as well as from the IHF’s own resources
1.3.2 Aim and purpose The aim of the HFH Programme was ‘to put hospice principles into hospital practice and to ensure that a systematic quality approach exists within the public health services to facilitate, in so far as is humanly possible, a good death, when it is expected or can be predicted, and supportive systems when death occurs unexpectedly’ (Grant proposal to Atlantic Philanthropies).
The Programme’s purpose was – and remains – to ensure that end-of-life care becomes
End-of-life care is care in relation to all aspects of end-of-life, dying, death and bereavement, regardless of the service user’s age or diagnosis or whether death is anticipated or unexpected. It includes care for those with advanced, progressive, incurable illness. Aspects of end-of-life care may include management of pain and other symptoms and provision of psychological, social, and other supports. HIQA National Standards for Safer Better Healthcare (2012)
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AND central to the mission and everyday business of hospitals. It promotes high-quality care
for all people at the end of life, regardless of the nature of their illness, whether their death is expected or sudden. In doing this, it acknowledges the role of all staff – clinical, administrative and support – in improving the end-of-life experience of patients and families in acute and community hospitals.
To achieve its mission, the Programme set out to:
• identify what constitutes end-of-life care and develop quality standards for such care in hospitals
• develop capacity to meet these standards • improve the culture of care in relation to all aspects of dying, death and bereavement
in hospitals and residential care settings• influence the health system to raise the profile and standards of end-of-life care.
An overview of the resulting overarching areas of work is provided in Figure 1.2.
Figure 1.2 Overarching areas of work of the HFH Programme
Audit and Standards for the development of
End-of-Life Care in Hospitals
Culture ChangeSupporting hospital personnel
to enhance their skills and confidence in relation to the provision of end-of-life care
Capacity DevelopmentSupport hospitals to implement the standards and then embed them in
the plans and policies
Influencing the SystemRaising the profile of end-of-life care and
building relationships at national levelin order to embed the learning arising from HFH into everyday health practice
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0131.5 HFH Programme Governance and Staffing
1.5.1 Programme Governance A National Steering Committee made up of senior representatives of various relevant organisations was established in 2006 to oversee the operation and development of the HFH Programme. This group met monthly in the first year and thereafter quarterly until January 2013, when, following a refocusing of the Programme’s objectives, overall responsibility transferred to the IHF Board. Membership of the committee was revised in 2011 to facilitate greater linkages between the committee and the HFH Acute Hospitals Network. As the Programme was rolled out, a number of sub-committees/advisory groups/networks were established to oversee the implementation of specific elements. See Figure 1.3 for details of these Programme structures and their relationship to one another over the period 2007-2012.
Figure 1.3 Overview of HFH Programme structures (2007-2012)
1.5.2 Programme staffingThroughout the period 2007-2013, the HFH Programme team based in the IHF’s offices comprised approximately three to four whole-time equivalent posts at any one time, including the Programme Manager, a Standards and Audit Officer/Co-ordinator and an Administrator. The exact focus and role of these staff changed over time to meet changing needs. The Programme also appointed a team of contract staff (up to 12.5 whole-time equivalent posts) to act as End-of-Life Development Coordinators. Three of these posts were based in large teaching hospitals: the Mater, St. James’s and Beaumont. The rest of the team worked across regions, supporting clusters of acute hospitals, while one team member supported community hospitals in the greater Dublin area. These Coordinators were in post for an average of approximately two years and were supported and mentored in their roles by the HFH core staff team.
HSE
Design & Diginity
Project Advisory
Group
Evaluationsub - committee
IHF Board
HFH National Steering Committee
Audit Project Advisory Group
Acute Hospital Network Community Hospital Network Dublin
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1.5.3 Programme roll-outThe Programme’s initial focus was on building relationships with acute and community hospitals interested in engaging, and ultimately in getting the Programme established within these hospitals. At the time of its formal launch in May 2007, 18 acute and 19 community hospitals had expressed an interest in becoming involved.
Participation required hospitals to sign a local Memorandum of Understanding (MOU 2007-2010) with the Programme. In 2010 acute hospitals wishing to continue their participation or those interested in getting involved were required to sign a new MOU (2010-2012), designed to formalise the relationships, enhance accountability and strengthen reporting. Further MOUs – one for acute hospitals, the other for residential care settings – were introduced for the period 2013-2015. These required hospitals to continue progressing their work on end-of-life care, but also specified the need to submit quarterly reports on progress in relation to development plans, using an agreed template.
A formal MOU (2013-2015) has recently been signed by the HFH Programme and the HSE.
1.5.4 Programme monitoring and evaluationA HFH Programme evaluation sub-committee was established in 2007. This sub-committee reported directly to the National Steering Committee. Following a review of proposed evaluation approaches, the sub-committee noted a lack of baseline information on end-of-life care in hospitals in Ireland and made a recommendation that a large-scale baseline audit be conducted. The purpose of the audit baseline was:
• To provide baseline data for evaluation purposes • To provide data to shape and support developments at local hospital level.
This was to be supplemented with qualitative studies. A formal qualitative study on the impact of the Programme as an advocacy initiative was commissioned and undertaken by Prof. David Clark and Dr Fiona Graham (2013)5 over the period 2009-2012. This study used a mix of methods, including interviews with key stakeholders, attendance at meetings, a review of Programme and hospital progress reports and other Programme documentation. After a series of interim reports, the final report was submitted in May 2013. Particular aspects of the Programme were also subject to internal review, while the first phase of the Final Journeys staff development programme was the subject of a specific evaluation.
The evaluation sub-committee was disbanded in 2010 when the National Steering Committee took over responsibility for this function.
5 Clark, G & Graham, F (2013) The Hospice Friendly Hospitals Programme in Ireland: Narrative Report.
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0132. Review of Activities, Outputs and Outcomes
2.1 Introduction
HFH Programme activities have been many and varied and could be examined in a number of ways. For the purposes of this review, key activities have been linked to one of the Programme’s four core areas of work/strategies.
Figure 2.1 HFH Programme core areas of work and key activities
While in this review each activity is examined under a particular area of work/strategy, many activities support more than one strategy. For example, the Ethical Framework for End-of-Life Care contributes not only to culture change in hospitals but also to the achievement of the HFH Quality Standards for End-of-Life Care and to the development of hospitals’ capacity to provide better end-of-life care. In many cases the HFH Programme worked with others to progress and support the activities.
Each of the four Programme areas of work is examined in turn in this section, first by providing an outline of the activities carried out under that heading, and then by assessing these activities using the RE-AIM framework (Reach Effectiveness Adoption Implementation
Audit and Standards• Review of the physical environment & production of Design and Dignity Guidelines• 2008/9 National Audit of End-of-Life Care in Hospitals• Development of Quality End-of-Life Care Standards• Development of an Audit & Review System to monitor implementation of the HFH Quality Standards
Culture Change• Staff training & development• Practice development• Ethical framework• Awards to reward change• A variety of information materials
Capacity Development• Structures to support End-of-Life Care (e.g. Standing Committees)• End-of-Life Care Development Plans• HFH Community Hospitals Network• HFH Acute Hospitals Network• Design & Dignity projects• Symbolic resources
Influencing the System• Engagement with HSE & HIQA• Supporting the Development of a Palliative Care Competence Framework• Awards to recognise change• Engagement with politicians• Media work
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E Maintenance). This facilitates examination of the following key questions:
Reach: What is known about numbers of staff, patients and families involved in the activity/strategy? Effectiveness: What is known about the overall impact of the activity/strategy?Adoption: What is known about the extent and nature of the adoption of the activity/strategy? Where did the activities happen (number of hospitals participating, etc.)? Implementation: What is known about the ways in which activities may have been adapted or changed? Maintenance: What is known about the extent to which the activity/strategy has become embedded/‘institutionalised’?
The final part of this section looks at the Programme’s overall achievements.
2.2 Audit and Standards
2.2.1 Activities
Figure 2.2 Audit and Standards: key activities
Figure 2.2 summarises the key activities undertaken in this area, these include:
1. Review of the physical environment and production of Design & Dignity Guidelines to enhance end-of-life care in hospitals. This review began with consultations and a review of the literature on hospital design,6 published in November 2007. The physical environment of 20 hospitals (including five community hospitals) was assessed as part of this review. The findings were subsequently used as the basis for developing the draft Design & Dignity Guidelines, which were finalised in 2008 following a period of public consultation. To support the development of exemplar projects that put these guidelines into practice, a Design & Dignity Grants Scheme was developed by the HFH Programme in 2010 in partnership with the HSE. (See Section 2.4 for details).
6 Hugodot & Normand (2007) ‘Design, Dignity and Privacy in Care at the End of Life in Hospitals’. Centre of Health Policy and Management, TCD.
Audit and Standards• Review of the physical environment and production of Design & Dignity Guidelines• 2008/9 National Audit of End-of-Life Care in Hospitals• Development of Quality End-of-Life Care Standards• Development of an Audit & Review System to monitor implementation of the HFH Quality Standards
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0132. 2008/9 National Audit of End-of-Life Care in
Hospitals The National Audit involved a review of patient cases across a number of acute and community hospital settings. It concluded that the ‘quality of end-of-life care in Irish hospitals was high by international standards, but that significant opportunities for improvement existed’. A new audit and review system is currently in development. See below)
3. Quality Standards for End-of-Life Care in Hospitals The development of the HFH Quality Standards was central to the work of the Programme as a whole. The standards were influenced by the learning generated by the National Audit, together with a review of international research. They were finalised in light of feedback received from a public consultation process.
4. Development of an Audit & Review System for End-of-Life Care A new audit and review system designed to support the monitoring and implementation of the Quality Standards is currently under development in collaboration with the HSE (Quality, Safety & Risk Directorate and Clinical Strategy & Programmes Directorate). This work is supported by a Project Advisory Group, which is co-chaired by the CEO of the IHF and the Clinical Lead for the HSE’s Clinical Programme for Palliative Care, and includes representatives of HIQA and the HSE’s National Audit Office. A number of healthcare sites are involved in piloting the new system.
The quality standards reflect this unity of the profound and the practical. They encourage us as individuals to reflect carefully on how we can honour the sacredness of every human life through responding with equal honour to the issues and experiences that are an essential part of being an individual.’
President Mary McAleeseForeword to the HFH Quality Standards
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Ana
lysi
s of
ke
y ac
tivi
tie
s un
der
Sta
ndar
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nd A
udit
, us
ing
RE
-AIM
Tabl
e 2
.1(a
) A
n an
alys
is o
f ac
tivi
ties
und
er S
tand
ards
and
Aud
it, u
sing
RE-
AIM
Act
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yR
each
Ef
fect
iven
ess
Ado
ptio
n Im
plem
enta
tion
M
aint
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ce
Des
ign
& D
igni
ty
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08
/9
Bas
elin
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evie
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delin
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Gra
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Sch
eme
20 h
ospi
tals
(in
clud
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5 c
omm
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hos
pita
ls)
part
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ated
in t
he
2008/9
Bas
elin
e R
evie
w
11 a
cute
hos
pita
ls
awar
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gran
ts u
nder
the
Des
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& D
igni
ty G
rant
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Sch
eme
Firs
t ba
selin
e da
ta in
plac
e fo
r th
e ph
ysic
al
envi
ronm
ent
of
hosp
itals
.
Des
ign
& D
igni
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Gui
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form
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deve
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he H
FH
Qua
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The
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re li
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SE
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The
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cal a
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atio
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leve
l.
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013
Tabl
e 2
.1(b
) A
n an
alys
is o
f ac
tivi
ties
und
er S
tand
ards
and
Aud
it, u
sing
RE-
AIM
Act
ivit
yR
each
Ef
fect
iven
ess
Ado
ptio
n Im
plem
enta
tion
Mai
nten
ance
Qua
lity
Sta
ndar
ds for
En
d-of
-Life
Car
e32 a
cute
hos
pita
ls a
re
impl
emen
ting
the
Qua
lity
Sta
ndar
ds in
the
con
text
of t
heir
part
icip
atio
n in
the
HFH
Acu
te H
ospi
tal
Net
wor
k.
The
Qua
lity
Sta
ndar
ds
set
out
a sh
ared
vis
ion
of t
he c
are
that
eac
h
pers
on s
houl
d re
ceiv
e at
end
of li
fe a
nd o
f w
hat
hosp
itals
sho
uld
aim
to
prov
ide.
A fr
amew
ork
and
stan
dard
s ar
e no
w in
plac
e to
ass
ist
hosp
itals
to d
evel
op a
nd e
nhan
ce
thei
r en
d-of
-life
car
e.
See
und
er R
each
Giv
en t
hat
the
Qua
lity
Sta
ndar
ds a
re n
ot
man
dato
ry, o
ngoi
ng
supp
ort
is n
eede
d fo
r
thei
r pr
iorit
isat
ion
and
impl
emen
tatio
n. H
FH
hosp
itals
are
sup
port
ing
this
thr
ough
the
ir
Net
wor
ks.
Thro
ugh
thei
r en
gage
men
t
with
the
HFH
Pro
gram
me
32
acu
te h
ospi
tals
hav
e
dem
onst
rate
d th
eir
supp
ort
for
the
Sta
ndar
ds.
The
Sta
ndar
ds a
chie
ved
sign
ifica
nt e
xter
nal
endo
rsem
ent
from
NES
C in
2012 r
epor
t,
Qua
lity
and
Sta
ndar
ds in
Irel
and:
End
-of-L
ife C
are
in
Hos
pita
ls.
End-
of-li
fe c
are
is
spec
ifica
lly m
entio
ned
in H
IQA’
s 2012 N
atio
nal
Sta
ndar
ds f
or
Saf
er B
ette
r H
ealth
care
(Sta
ndar
d 1.7
.3.)
.
The
HFH
Qua
lity
Sta
ndar
ds a
nd H
IQA’
s
natio
nal s
tand
ards
shar
e a
focu
s on
rol
es,
outc
omes
and
qua
lity
impr
ovem
ent.
The
HFH
Sta
ndar
ds a
re
liste
d in
the
Res
ourc
es
sect
ion
of t
he H
IQA
natio
nal s
tand
ards
.
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hlig
htin
g th
eir
pote
ntia
l to
assi
st
in d
emon
stra
ting
com
plia
nce
with
the
latt
er m
ay b
e a
good
mec
hani
sm t
o
enco
urag
e th
eir
wid
er
impl
emen
tatio
n.
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‘Not
doi
ng t
he a
udit
wou
ld
be ju
st a
noth
er d
ay w
ithou
t
stop
ping
to
pres
s th
e pa
use
butt
on’
Audi
t M
anag
er a
nd D
irect
or o
f
Nur
sing
in a
res
iden
tial c
are
serv
ice
for
olde
r pe
ople
Sta
ndar
ds a
nd A
udit
: Sum
mar
y of
ach
ieve
men
ts a
nd c
halle
nges
Activ
ities
in t
he a
rea
of t
he H
FH P
rogr
amm
e’s
Audi
t of
End
-of-L
ife C
are
and
Qua
lity
Sta
ndar
ds for
End
-of-L
ife C
are
have
had
a c
onsi
dera
ble
and
grow
ing
reac
h.
Sec
urin
g th
e en
gage
men
t of
the
HS
E –
and
to a
less
er e
xten
t, H
IQA
– in
the
pro
cess
of de
velo
ping
and
impl
emen
ting
the
stan
dard
s an
d au
dit
has
been
a k
ey c
halle
nge,
not
help
ed b
y th
e si
gnifi
cant
ong
oing
cha
nges
in t
he H
SE
in r
elat
ion
to it
s fu
ture
dire
ctio
n, o
rgan
isat
ion
and
stru
ctur
es.
The
esta
blis
hmen
t in
2011 o
f th
e ne
w H
SE
Dire
ctor
ate
of C
linic
al S
trat
egy
& P
rogr
amm
es a
nd D
irect
orat
e of
Qua
lity
& P
atie
nt S
afet
y w
ere
very
wel
com
e. T
he H
FH P
rogr
amm
e
has
man
aged
to
esta
blis
h us
eful
wor
king
rel
atio
nshi
ps a
nd li
nkag
es w
ith b
oth
Dire
ctor
ates
.
Tabl
e 2
.1(c
) A
n an
alys
is o
f ac
tivi
ties
und
er S
tand
ards
and
Aud
it, u
sing
RE-
AIM
Act
ivit
yR
each
Ef
fect
iven
ess
Ado
ptio
nIm
plem
enta
tion
M
aint
enan
ce
2008/9 N
atio
nal A
udit
This
aud
it ‘is
a
repr
esen
tativ
e sa
mpl
e
of 1
0%
of
acut
e ho
spita
l
deat
hs a
nd 2
9%
of
com
mun
ity h
ospi
tal
deat
hs’.
HFH
Qua
lity
Sta
ndar
ds f
or E
nd-o
f-Life
Car
e in
Hos
pita
ls (
p.29)
New
Aud
it a
nd R
evie
w
Sys
tem
(2010)
The
natio
nal a
udit
invo
lved
24 a
cute
hosp
itals
and
19
com
mun
ity h
ospi
tals
;
and
revi
ewed
1,0
00 d
eath
s.
The
6,4
13 in
form
ants
invo
lved
incl
uded
:
461 b
erea
ved
rela
tives
(46%
res
pons
e ra
te).
737 d
octo
rs.
999 n
urse
s.
2,3
58 w
ard
staf
f.
1,8
58 o
ther
hos
pita
l
staf
f.
The
new
sys
tem
is b
eing
pilo
ted
in 3
5 s
ites:
6 a
cute
hos
pita
ls.
5 c
omm
unity
hos
pita
ls.
7 p
rivat
e nu
rsin
g ho
mes
.
4 s
peci
alis
t pa
lliat
ive
care
ser
vice
s.
4 in
telle
ctua
l dis
abili
ty
serv
ices
.
9 G
P/pr
imar
y ca
re
cent
res.
The
audi
t w
as a
hug
e
unde
rtak
ing
by b
usy
hosp
itals
.
Ove
rvie
w o
f en
d-of
-life
care
in h
ospi
tals
in p
lace
for
the
first
tim
e in
20
10
.
Loca
l fee
dbac
k re
port
s
prov
ided
to
part
icip
atin
g
hosp
itals
.
The
new
sys
tem
bui
lds
on t
he le
arni
ng fro
m t
he
20
08
/9 a
udit.
Whe
n fin
alis
ed, i
t w
ill
offe
r th
e H
SE
and
HIQ
A a
met
hodo
logy
to
mea
sure
the
achi
evem
ent
of t
he
HFH
Qua
lity
Sta
ndar
ds
and
rele
vant
nat
iona
l
stan
dard
s.
Sta
ff r
espo
nses
to
the
initi
al p
hase
of th
e pi
lot
indi
cate
s th
at t
here
is a
n
appe
tite
for
an a
udit
tool
of t
his
natu
re
‘The
aud
it pr
ovid
ed
sign
ifica
nt o
ppor
tuni
ty
for
feed
back
to
be g
iven
to s
taff
mem
bers
acr
oss
diff
eren
t di
scip
lines
whi
ch
wou
ld n
ot h
ave
happ
ened
in t
he a
bsen
ce o
f th
e
(rev
iew
) m
eetin
g’.
Loca
l Aud
it Fa
cilit
ator
‘The
Aud
it To
ol r
aise
d
cons
ciou
snes
s of
issu
es
that
the
tea
m h
ad n
ot
cons
ider
ed. I
t w
as v
ery
posi
tive
as it
bro
ught
all k
ey c
are
prov
ider
s
toge
ther
and
sig
nific
ant
lear
ning
was
sha
red’
.
Loca
l Aud
it Fa
cilit
ator
The
audi
t w
as v
ery
reso
urce
inte
nsiv
e, w
ith li
mite
d
oppo
rtun
ities
for
tea
m
refle
ctio
n.
The
new
2010 a
udit
and
revi
ew s
yste
m w
as d
evel
oped
in p
artn
ersh
ip w
ith t
he H
SE’
s
Palli
ativ
e C
are
Clin
ical
Car
e
Dire
ctor
ate
and
in c
onsu
ltatio
n
with
HIQ
A.
Ber
eave
d re
lativ
es’
feed
back
in b
oth
the
2008/9
nat
iona
l
audi
t an
d th
e pi
lot
of t
he
2010 a
udit
have
hig
hlig
hted
man
y co
ncer
ns, e
.g.
the
qual
ity o
f co
mm
unic
atio
ns
and
the
abili
ty o
f ho
spita
ls
to f
acili
tate
peo
ple
in b
eing
with
the
ir re
lativ
e as
muc
h
as p
ossi
ble,
incl
udin
g at
the
time
of d
eath
. C
are
is n
eede
d
to e
nsur
e th
at t
his
feed
back
is m
anag
ed in
a c
onst
ruct
ive,
non-
thre
aten
ing
man
ner.
The
role
of
the
HS
E Ad
voca
cy U
nit
is k
ey in
rel
atio
n to
thi
s is
sue.
HS
E Pa
lliat
ive
Car
e
Clin
ical
Car
e D
irect
orat
e
and
HIQ
A in
volv
emen
t in
the
deve
lopm
ent
of t
he
new
aud
it is
vita
l to
its
impl
emen
tatio
n.
Actio
n w
ill b
e re
quire
d
to e
nsur
e th
at t
he a
udit
syst
em, o
nce
final
ised
, is
firm
ly e
mbe
dded
with
in t
he
HS
E, w
ith a
des
igna
ted
pers
on r
espo
nsib
le f
or
driv
ing
its im
plem
enta
tion
natio
nally
.
At h
ospi
tal l
evel
ded
icat
ed
driv
ers
and
skill
ed
faci
litat
ors
are
esse
ntia
l
to t
he r
oll-o
ut o
f th
e au
dit
loca
lly.
15
OVE
RVI
EW 2
007-2
013
Ove
r th
e pe
riod
April
2012-1
3:
120 d
eath
s au
dite
d.
59 b
erea
ved
rela
tives
surv
eys
retu
rned
.
23 in
depe
nden
t
asse
ssm
ents
con
duct
ed.
Loca
l im
plem
enta
tion
of t
he
audi
t ha
s pr
oved
cha
lleng
ing
in t
erm
s of
the
tim
e re
quire
d
to s
et u
p au
dit
mee
tings
,
as w
ell a
s a
leve
l of
anxi
ety
amon
g do
ctor
s in
rel
atio
n
to c
ondu
ctin
g au
dits
in t
he
abse
nce
of t
he r
elev
ant
FOI
legi
slat
ion.
‘Not
doi
ng t
he a
udit
wou
ld
be ju
st a
noth
er d
ay w
ithou
t
stop
ping
to
pres
s th
e pa
use
butt
on’
Audi
t M
anag
er a
nd D
irect
or o
f
Nur
sing
in a
res
iden
tial c
are
serv
ice
for
olde
r pe
ople
Sta
ndar
ds a
nd A
udit
: Sum
mar
y of
ach
ieve
men
ts a
nd c
halle
nges
Activ
ities
in t
he a
rea
of t
he H
FH P
rogr
amm
e’s
Audi
t of
End
-of-L
ife C
are
and
Qua
lity
Sta
ndar
ds for
End
-of-L
ife C
are
have
had
a c
onsi
dera
ble
and
grow
ing
reac
h.
Sec
urin
g th
e en
gage
men
t of
the
HS
E –
and
to a
less
er e
xten
t, H
IQA
– in
the
pro
cess
of de
velo
ping
and
impl
emen
ting
the
stan
dard
s an
d au
dit
has
been
a k
ey c
halle
nge,
not
help
ed b
y th
e si
gnifi
cant
ong
oing
cha
nges
in t
he H
SE
in r
elat
ion
to it
s fu
ture
dire
ctio
n, o
rgan
isat
ion
and
stru
ctur
es.
The
esta
blis
hmen
t in
2011 o
f th
e ne
w H
SE
Dire
ctor
ate
of C
linic
al S
trat
egy
& P
rogr
amm
es a
nd D
irect
orat
e of
Qua
lity
& P
atie
nt S
afet
y w
ere
very
wel
com
e. T
he H
FH P
rogr
amm
e
has
man
aged
to
esta
blis
h us
eful
wor
king
rel
atio
nshi
ps a
nd li
nkag
es w
ith b
oth
Dire
ctor
ates
.
Tabl
e 2
.1(c
) A
n an
alys
is o
f ac
tivi
ties
und
er S
tand
ards
and
Aud
it, u
sing
RE-
AIM
Act
ivit
yR
each
Ef
fect
iven
ess
Ado
ptio
nIm
plem
enta
tion
M
aint
enan
ce
2008/9 N
atio
nal A
udit
This
aud
it ‘is
a
repr
esen
tativ
e sa
mpl
e
of 1
0%
of
acut
e ho
spita
l
deat
hs a
nd 2
9%
of
com
mun
ity h
ospi
tal
deat
hs’.
HFH
Qua
lity
Sta
ndar
ds f
or E
nd-o
f-Life
Car
e in
Hos
pita
ls (
p.29)
New
Aud
it a
nd R
evie
w
Sys
tem
(2010)
The
natio
nal a
udit
invo
lved
24 a
cute
hosp
itals
and
19
com
mun
ity h
ospi
tals
;
and
revi
ewed
1,0
00 d
eath
s.
The
6,4
13 in
form
ants
invo
lved
incl
uded
:
461 b
erea
ved
rela
tives
(46%
res
pons
e ra
te).
737 d
octo
rs.
999 n
urse
s.
2,3
58 w
ard
staf
f.
1,8
58 o
ther
hos
pita
l
staf
f.
The
new
sys
tem
is b
eing
pilo
ted
in 3
5 s
ites:
6 a
cute
hos
pita
ls.
5 c
omm
unity
hos
pita
ls.
7 p
rivat
e nu
rsin
g ho
mes
.
4 s
peci
alis
t pa
lliat
ive
care
ser
vice
s.
4 in
telle
ctua
l dis
abili
ty
serv
ices
.
9 G
P/pr
imar
y ca
re
cent
res.
The
audi
t w
as a
hug
e
unde
rtak
ing
by b
usy
hosp
itals
.
Ove
rvie
w o
f en
d-of
-life
care
in h
ospi
tals
in p
lace
for
the
first
tim
e in
20
10
.
Loca
l fee
dbac
k re
port
s
prov
ided
to
part
icip
atin
g
hosp
itals
.
The
new
sys
tem
bui
lds
on t
he le
arni
ng fro
m t
he
20
08
/9 a
udit.
Whe
n fin
alis
ed, i
t w
ill
offe
r th
e H
SE
and
HIQ
A a
met
hodo
logy
to
mea
sure
the
achi
evem
ent
of t
he
HFH
Qua
lity
Sta
ndar
ds
and
rele
vant
nat
iona
l
stan
dard
s.
Sta
ff r
espo
nses
to
the
initi
al p
hase
of th
e pi
lot
indi
cate
s th
at t
here
is a
n
appe
tite
for
an a
udit
tool
of t
his
natu
re
‘The
aud
it pr
ovid
ed
sign
ifica
nt o
ppor
tuni
ty
for
feed
back
to
be g
iven
to s
taff
mem
bers
acr
oss
diff
eren
t di
scip
lines
whi
ch
wou
ld n
ot h
ave
happ
ened
in t
he a
bsen
ce o
f th
e
(rev
iew
) m
eetin
g’.
Loca
l Aud
it Fa
cilit
ator
‘The
Aud
it To
ol r
aise
d
cons
ciou
snes
s of
issu
es
that
the
tea
m h
ad n
ot
cons
ider
ed. I
t w
as v
ery
posi
tive
as it
bro
ught
all k
ey c
are
prov
ider
s
toge
ther
and
sig
nific
ant
lear
ning
was
sha
red’
.
Loca
l Aud
it Fa
cilit
ator
The
audi
t w
as v
ery
reso
urce
inte
nsiv
e, w
ith li
mite
d
oppo
rtun
ities
for
tea
m
refle
ctio
n.
The
new
2010 a
udit
and
revi
ew s
yste
m w
as d
evel
oped
in p
artn
ersh
ip w
ith t
he H
SE’
s
Palli
ativ
e C
are
Clin
ical
Car
e
Dire
ctor
ate
and
in c
onsu
ltatio
n
with
HIQ
A.
Ber
eave
d re
lativ
es’
feed
back
in b
oth
the
2008/9
nat
iona
l
audi
t an
d th
e pi
lot
of t
he
2010 a
udit
have
hig
hlig
hted
man
y co
ncer
ns, e
.g.
the
qual
ity o
f co
mm
unic
atio
ns
and
the
abili
ty o
f ho
spita
ls
to f
acili
tate
peo
ple
in b
eing
with
the
ir re
lativ
e as
muc
h
as p
ossi
ble,
incl
udin
g at
the
time
of d
eath
. C
are
is n
eede
d
to e
nsur
e th
at t
his
feed
back
is m
anag
ed in
a c
onst
ruct
ive,
non-
thre
aten
ing
man
ner.
The
role
of
the
HS
E Ad
voca
cy U
nit
is k
ey in
rel
atio
n to
thi
s is
sue.
HS
E Pa
lliat
ive
Car
e
Clin
ical
Car
e D
irect
orat
e
and
HIQ
A in
volv
emen
t in
the
deve
lopm
ent
of t
he
new
aud
it is
vita
l to
its
impl
emen
tatio
n.
Actio
n w
ill b
e re
quire
d
to e
nsur
e th
at t
he a
udit
syst
em, o
nce
final
ised
, is
firm
ly e
mbe
dded
with
in t
he
HS
E, w
ith a
des
igna
ted
pers
on r
espo
nsib
le f
or
driv
ing
its im
plem
enta
tion
natio
nally
.
At h
ospi
tal l
evel
ded
icat
ed
driv
ers
and
skill
ed
faci
litat
ors
are
esse
ntia
l
to t
he r
oll-o
ut o
f th
e au
dit
loca
lly.
16
THE
HO
SPI
CE
FRIE
ND
LY H
OS
PITA
LS P
RO
GR
AMM
E 2.3 Culture Change
2.3.1 Activities
Figure 2.3 Culture Change: key activities
Figure 2.3 summarises the key activities undertaken in this area, these include:
1. Education and staff development activities instigated by the HFH Programme included three accredited training initiatives aimed at hospital staff: Final Journeys, a one-day workshop targeting all healthcare staff; Dealing with Bad News, a half-day workshop for all hospital staff who have a role in breaking bad news; and What Matters to Me – a one-day workshop designed for staff working in community hospitals/long-term care settings. The programme also provided bursaries to enable hospital staff to participate in the well-recognised eight-week European Certificate in Essential Palliative Care.
2. The Practice Development Programme, which ran for a period of two years, was jointly initiated by the HFH Programme and the HSE’s Office of the Director of Nursing Services. Its purpose was to equip key nursing and healthcare assistance staff with the skills to provide more effective person-centred end-of-life care to patients and their families. The programme had five strands, including one for major acute hospitals, another for acute and community care settings in the North West, and a national introductory practice development summer school. It also involved the provision of workshops for end-of-life care and a programme for nurses working in intellectual disability services.
Training in end-of-life care positively affects the overall care outcome. Very few staff (13%) had received this kind of training.
National Audit of End-of-Life Care in Hospitals in Ireland, 2008/9 (2010)
I feel much more confident as a Health Care Assistant …before this I would have avoided talking to patients and their families about dying and left all the decisions to the nurse to make. I didn’t realise that I had a role to play too and that it was an important role.
Healthcare Assistant who participated in HFH Programme training
Culture Change1. Education and staff development2. Practice development3. Ethical framework4. Key information materials
17
OVE
RVI
EW 2
007-2
013
3. The Ethical Framework for End-of-Life Care was developed as an educational tool for professionals. It aims to foster and support ethically and legally sound clinical practice and decisions during difficult times in end-of-life treatment and care in Irish healthcare settings. Based on the experiences and practices of patients, families, the general public, the media, health professionals, hospital staff and legislators, the Framework also benefited from the learning arising from a study of practitioners’ perspectives on autonomy at end-of-life (Quinlan & O’Neill, 2010), commissioned by the HFH Programme.
4. Key information materials produced by the Programme included the Competence and Compassion Map; a resources folder and a short animation entitled A Wish. The map provides healthcare staff with practical, easily accessible advice and prompts for the provision of end-of-life care, as well as information on the actions required following a patient’s death. The second edition of the map was reviewed by the HSE’s Clinical Programme for Palliative Care and includes the HSE logo. The resources folder was developed as a way of storing guidelines, leaflets, checklists and other end-of-life care materials in one place. It was designed using similar headings as the map. The short animation, A Wish, articulates in very human terms what dying in hospital may feel like for the patient, and how good end-of-life care can have a significant impact on his/her life and death. The HFH Programme website is also a very useful source of information on end-of-life care.
The Practice Development initiative ... captured the imagination of senior nurses in the hospitals, who had met together to improve communication skills and strategies and then proceeded to implement specific projects at ward level, to create a ‘cascading’ effect. The emphasis here was on culture change and challenge within, giving people the tools to challenge the things that they see [are] wrong.
Clark & Graham (2013, p.24)
18
THE
HO
SPI
CE
FRIE
ND
LY H
OS
PITA
LS P
RO
GR
AMM
E
Del
iver
ing
Dea
ling
with
Bad
New
s to
med
ical
stu
dent
s in
asso
ciat
ion
with
the
Roy
al
Col
lege
of
Phys
icia
ns o
f Ire
land
(RC
PI)
wor
ked
wel
l ini
tially
, but
has
beco
me
mor
e ch
alle
ngin
g
follo
win
g ch
ange
s in
RC
PI
pers
onne
l.
Initi
ally
the
HFH
bur
sary
cove
red
the
full
cost
of
the
Euro
pean
Cer
tifica
te.
Follo
win
g
a de
cisi
on t
o re
ques
t a
20%
cont
ribut
ion
from
par
ticip
ants
,
appl
icat
ions
fel
l – b
ut t
he
perc
enta
ge s
ucce
ssfu
lly
com
plet
ing
the
trai
ning
ros
e.
2.3
.2 A
naly
sis
of k
ey a
ctiv
itie
s un
der
Cul
ture
Cha
nge,
usi
ng R
E-A
IM
Tabl
e 2
.2(a
) A
n an
alys
is o
f ac
tivi
ties
und
er C
ultu
re C
hang
e, u
sing
RE-
AIM
Act
ivit
yR
each
Ef
fect
iven
ess
Ado
ptio
n Im
plem
enta
tion
M
aint
enan
ce
Educ
atio
n &
Sta
ff
Dev
elop
men
t
Appr
ox.
4,4
38 p
eopl
e
took
par
t in
tra
inin
g,
Aug.
2010-A
pr.
201
3:
3,0
53 F
inal
Jou
rney
s.
584 D
ealin
g w
ith B
ad
New
s.
801 W
hat
Mat
ters
to
Me.
194 p
artic
ipan
ts
equi
pped
& t
rain
ed t
o
faci
litat
e &
del
iver
the
trai
ning
:
•
13
9 for
Fin
al
Jour
neys
.
•
27
for
Dea
ling
with
Bad
New
s.
•
28
for
Wha
t M
atte
rs
to M
e.
278 h
ealth
care
sta
ff
(83%
nur
ses,
13%
doct
ors,
4%
oth
er) w
ere
awar
ded
a bu
rsar
y to
unde
rtak
e th
e Eu
rope
an
Cer
tifica
te in
Ess
entia
l
Palli
ativ
e C
are.
Part
icip
ants
hav
e
indi
cate
d th
at t
hey:
•
have
an
incr
ease
d
awar
enes
s of
end
-of-l
ife
issu
es;
•
are
bett
er a
ble
to
impa
rt b
ad n
ews;
•
shar
e le
arni
ng a
nd
know
ledg
e w
ith
colle
ague
s;
•
are
bett
er a
ble
to
disc
uss
end-
of-li
fe c
are
conc
erns
with
res
iden
ts
in lo
ng-s
tay
sett
ings
.
Hos
pita
ls c
an d
eliv
er
trai
ning
in h
ouse
.
73
% o
f bu
rsar
y re
cipi
ents
obta
ined
cer
tifica
te
Hav
ing
part
icip
ated
in
the
trai
ning
I no
w h
ave
the
cour
age
to a
nsw
er
ques
tions
tha
t fa
mili
es
mig
ht a
sk m
e
Team
mem
ber,
Nur
sing
Hom
e
Part
icip
ant
profi
le:
Fina
l Jou
rney
s:•
61%
nur
sing
•
1%
med
icin
e.
Dea
ling
with
B
ad N
ews
(1
0 a
cute
hos
pita
ls &
othe
r ca
re s
ettin
gs):
•
30%
med
ics
•
4%
nur
ses
•
53%
stu
dent
s (4
th M
ed.)
Wha
t M
atte
rs
to M
e:•
52%
nur
sing
•
1%
med
icin
e.
Bur
sary
ap
plic
ants
:•
82%
fro
m a
cute
hosp
itals
; th
e
rem
aind
er fro
m o
ther
heal
thca
re s
ettin
gs.
Fina
l Jou
rney
s sp
awne
d th
e
two
othe
r w
orks
hops
, one
spec
ifica
lly t
arge
ting
staf
f in
long
-term
car
e se
ttin
gs.
Upt
ake
of a
ll th
ree
was
hig
h.
Trai
ned
part
icip
ants
str
engt
hen
the
wor
k of
the
loca
l End
-of-L
ife
Sta
ndin
g C
omm
ittee
s.
With
hos
pita
l sta
ff t
rain
ed
as f
acili
tato
rs, h
ospi
tals
can
deliv
er t
he t
rain
ing
from
with
in
thei
r ow
n re
sour
ces.
The
long
-term
str
ateg
y fo
r st
aff
deve
lopm
ent
prog
ram
mes
had
been
to
roll
them
out
thr
ough
form
al H
SE
trai
ning
str
uctu
res
& o
ther
pro
vide
rs w
ith in
divi
dual
faci
litat
ors
with
in t
he h
ospi
tal
syst
em.
How
ever
, cha
nges
in
the
HS
E an
d a
mor
ator
ium
on s
taff
rel
ease
for
tra
inin
g
over
2012-1
3 h
as m
ade
this
chal
leng
ing.
As
a re
sult,
the
IHF
mad
e a
deci
sion
to
(a)
focu
s
on r
esid
entia
l car
e se
ttin
gs a
nd
the
regi
onal
dev
elop
men
t of
Wha
t M
atte
rs T
o M
e in
2012-
13
; an
d (b
) co
ntin
ue t
o su
ppor
t
Fina
l Jou
rney
s fa
cilit
ator
trai
ning
in a
cute
hos
pita
ls.
Sin
ce 2
012, r
espo
nsib
ility
for
the
vario
us s
taff
deve
lopm
ent
prog
ram
mes
rest
s w
ith t
he IH
F
educ
atio
n te
am.
A ke
y ch
alle
nge
rem
ains
the
exte
nt t
o w
hich
hosp
itals
will
be
able
/
prep
ared
to
free
sta
ff
(par
ticul
arly
nur
sing
sta
ff)
to a
tten
d tr
aini
ng, g
iven
that
the
use
of
locu
ms
and
agen
cy n
ursi
ng h
as b
een
huge
ly c
urta
iled.
The
Sep
t. 2
013
‘Had
ding
ton
Roa
d.
Agre
emen
t’ h
as a
dded
an
extr
a sh
ift t
o th
e w
orkl
oad
of m
any
heal
thca
re s
taff
,
incr
easi
ng r
eluc
tanc
e to
take
on
anyt
hing
ext
ra,
such
as
trai
ning
.
19
OVE
RVI
EW 2
007-2
013
Del
iver
ing
Dea
ling
with
Bad
New
s to
med
ical
stu
dent
s in
asso
ciat
ion
with
the
Roy
al
Col
lege
of
Phys
icia
ns o
f Ire
land
(RC
PI)
wor
ked
wel
l ini
tially
, but
has
beco
me
mor
e ch
alle
ngin
g
follo
win
g ch
ange
s in
RC
PI
pers
onne
l.
Initi
ally
the
HFH
bur
sary
cove
red
the
full
cost
of
the
Euro
pean
Cer
tifica
te.
Follo
win
g
a de
cisi
on t
o re
ques
t a
20%
cont
ribut
ion
from
par
ticip
ants
,
appl
icat
ions
fel
l – b
ut t
he
perc
enta
ge s
ucce
ssfu
lly
com
plet
ing
the
trai
ning
ros
e.
2.3
.2 A
naly
sis
of k
ey a
ctiv
itie
s un
der
Cul
ture
Cha
nge,
usi
ng R
E-A
IM
Tabl
e 2
.2(a
) A
n an
alys
is o
f ac
tivi
ties
und
er C
ultu
re C
hang
e, u
sing
RE-
AIM
Act
ivit
yR
each
Ef
fect
iven
ess
Ado
ptio
n Im
plem
enta
tion
M
aint
enan
ce
Educ
atio
n &
Sta
ff
Dev
elop
men
t
Appr
ox.
4,4
38 p
eopl
e
took
par
t in
tra
inin
g,
Aug.
2010-A
pr.
201
3:
3,0
53 F
inal
Jou
rney
s.
584 D
ealin
g w
ith B
ad
New
s.
801 W
hat
Mat
ters
to
Me.
194 p
artic
ipan
ts
equi
pped
& t
rain
ed t
o
faci
litat
e &
del
iver
the
trai
ning
:
•
13
9 for
Fin
al
Jour
neys
.
•
27
for
Dea
ling
with
Bad
New
s.
•
28
for
Wha
t M
atte
rs
to M
e.
278 h
ealth
care
sta
ff
(83%
nur
ses,
13%
doct
ors,
4%
oth
er) w
ere
awar
ded
a bu
rsar
y to
unde
rtak
e th
e Eu
rope
an
Cer
tifica
te in
Ess
entia
l
Palli
ativ
e C
are.
Part
icip
ants
hav
e
indi
cate
d th
at t
hey:
•
have
an
incr
ease
d
awar
enes
s of
end
-of-l
ife
issu
es;
•
are
bett
er a
ble
to
impa
rt b
ad n
ews;
•
shar
e le
arni
ng a
nd
know
ledg
e w
ith
colle
ague
s;
•
are
bett
er a
ble
to
disc
uss
end-
of-li
fe c
are
conc
erns
with
res
iden
ts
in lo
ng-s
tay
sett
ings
.
Hos
pita
ls c
an d
eliv
er
trai
ning
in h
ouse
.
73
% o
f bu
rsar
y re
cipi
ents
obta
ined
cer
tifica
te
Hav
ing
part
icip
ated
in
the
trai
ning
I no
w h
ave
the
cour
age
to a
nsw
er
ques
tions
tha
t fa
mili
es
mig
ht a
sk m
e
Team
mem
ber,
Nur
sing
Hom
e
Part
icip
ant
profi
le:
Fina
l Jou
rney
s:•
61%
nur
sing
•
1%
med
icin
e.
Dea
ling
with
B
ad N
ews
(1
0 a
cute
hos
pita
ls &
othe
r ca
re s
ettin
gs):
•
30%
med
ics
•
4%
nur
ses
•
53%
stu
dent
s (4
th M
ed.)
Wha
t M
atte
rs
to M
e:•
52%
nur
sing
•
1%
med
icin
e.
Bur
sary
ap
plic
ants
:•
82%
fro
m a
cute
hosp
itals
; th
e
rem
aind
er fro
m o
ther
heal
thca
re s
ettin
gs.
Fina
l Jou
rney
s sp
awne
d th
e
two
othe
r w
orks
hops
, one
spec
ifica
lly t
arge
ting
staf
f in
long
-term
car
e se
ttin
gs.
Upt
ake
of a
ll th
ree
was
hig
h.
Trai
ned
part
icip
ants
str
engt
hen
the
wor
k of
the
loca
l End
-of-L
ife
Sta
ndin
g C
omm
ittee
s.
With
hos
pita
l sta
ff t
rain
ed
as f
acili
tato
rs, h
ospi
tals
can
deliv
er t
he t
rain
ing
from
with
in
thei
r ow
n re
sour
ces.
The
long
-term
str
ateg
y fo
r st
aff
deve
lopm
ent
prog
ram
mes
had
been
to
roll
them
out
thr
ough
form
al H
SE
trai
ning
str
uctu
res
& o
ther
pro
vide
rs w
ith in
divi
dual
faci
litat
ors
with
in t
he h
ospi
tal
syst
em.
How
ever
, cha
nges
in
the
HS
E an
d a
mor
ator
ium
on s
taff
rel
ease
for
tra
inin
g
over
2012-1
3 h
as m
ade
this
chal
leng
ing.
As
a re
sult,
the
IHF
mad
e a
deci
sion
to
(a)
focu
s
on r
esid
entia
l car
e se
ttin
gs a
nd
the
regi
onal
dev
elop
men
t of
Wha
t M
atte
rs T
o M
e in
2012-
13
; an
d (b
) co
ntin
ue t
o su
ppor
t
Fina
l Jou
rney
s fa
cilit
ator
trai
ning
in a
cute
hos
pita
ls.
Sin
ce 2
012, r
espo
nsib
ility
for
the
vario
us s
taff
deve
lopm
ent
prog
ram
mes
rest
s w
ith t
he IH
F
educ
atio
n te
am.
A ke
y ch
alle
nge
rem
ains
the
exte
nt t
o w
hich
hosp
itals
will
be
able
/
prep
ared
to
free
sta
ff
(par
ticul
arly
nur
sing
sta
ff)
to a
tten
d tr
aini
ng, g
iven
that
the
use
of
locu
ms
and
agen
cy n
ursi
ng h
as b
een
huge
ly c
urta
iled.
The
Sep
t. 2
013
‘Had
ding
ton
Roa
d.
Agre
emen
t’ h
as a
dded
an
extr
a sh
ift t
o th
e w
orkl
oad
of m
any
heal
thca
re s
taff
,
incr
easi
ng r
eluc
tanc
e to
take
on
anyt
hing
ext
ra,
such
as
trai
ning
.
20
THE
HO
SPI
CE
FRIE
ND
LY H
OS
PITA
LS P
RO
GR
AMM
E
Tabl
e 2
.2(b
) A
n an
alys
is o
f ac
tivi
ties
und
er C
ultu
re C
hang
e, u
sing
RE-
AIM
Act
ivit
yR
each
Ef
fect
iven
ess
Ado
ptio
n Im
plem
enta
tion
M
aint
enan
ce
Pra
ctic
e D
evel
opm
ent
Pro
gram
me
226 h
ealth
care
prof
essi
onal
s
part
icip
ated
8 B
and
1 A
cute
Hos
pita
ls p
artic
ipat
ed:
•
The
Mat
er
•
Talla
ght
•
Gal
way
Uni
vers
ity
•
St.
Jam
es’s
•
Mid
- Wes
tern
(Doo
rado
yle)
•
Cor
k U
nive
rsity
•
Con
nolly
•
Bea
umon
t
2 N
ursi
ng H
omes
part
icip
ated
:
Ben
eavi
n N
ursi
ng H
ome
Chu
rchv
iew
Nur
sing
Hom
e
Part
icip
ants
dev
elop
ed:
•
A be
tter
und
erst
andi
ng
of e
nd-o
f-life
car
e
prac
tices
.
•
Con
fiden
ce t
o
supp
ortiv
ely
chal
leng
e
poor
pra
ctic
e
•
Enha
nced
com
mun
icat
ion
skill
s to
sens
itive
ly r
elat
e to
the
dyin
g pe
rson
& fam
ily.
•
Cap
aciti
es t
o sh
are
lear
ning
with
the
ir
colle
ague
s
The
follo
win
g en
gage
d in
the
Prog
ram
me:
•
10 A
cute
Hos
pita
ls
•
1 h
ospi
ce in
the
Nor
th W
est
•
4 C
omm
unity
Hos
pita
ls,
•
2 N
ursi
ng H
omes
•
13 in
telle
ctua
l
disa
bilit
y se
rvic
es
•
50 in
divi
dual
part
icip
ants
in
the
Mid
land
s an
d S
outh
-
East
Part
icip
ants
use
d pr
actic
e
deve
lopm
ent
proc
esse
s to
faci
litat
e:
•
Crit
ical
rev
iew
of
envi
ronm
ents
to
eval
uate
wha
t cl
inic
al w
ork
area
s fe
el
like
for
a dy
ing
patie
nt &
the
ir
fam
ily.
•
The
use
of p
erso
n-ce
ntre
d
lang
uage
whe
n ad
dres
sing
patie
nts/
resi
dent
s &
fam
ilies
, and
com
mun
icat
ing
with
oth
er t
eam
mem
bers
•
Enha
nced
leve
ls o
f
Indi
vidu
alis
ed c
are
plan
ning
.
•
The
use
of v
alid
ated
too
ls t
o
criti
cally
eva
luat
e pr
actic
es
and
chan
ge
22
par
ticip
ants
tra
ined
as P
ract
ice
Dev
elop
men
t
Faci
litat
ors.
‘Thi
s pr
oces
s ov
er a
nyth
ing
else
I ha
ve d
one
for
year
s ha
s
affe
cted
the
way
I re
flect
, act
and
the
lang
uage
I us
e, t
he w
ay
I thi
nk a
nd w
ork,
how
I se
e m
y
life,
wha
t an
d w
here
are
my
prio
ritie
s. I
am in
a b
ette
r sp
ace
for
it’.
Prac
tice
Dev
elop
men
t
Part
icip
ant
Hos
pita
ls in
volv
ed
have
edu
cate
d pr
actic
e
deve
lopm
ent
faci
litat
ors
with
in t
heir
staf
f,
who
are
cap
able
of
faci
litat
ing
furt
her
prac
tice
deve
lopm
ent
initi
ativ
es.
The
exte
nt t
o w
hich
hosp
itals
will
be
prep
ared
to f
ree
staf
f (p
artic
ular
ly
nurs
ing
staf
f) t
o
part
icip
ate
is a
n is
sue.
Man
agem
ent
supp
ort
is
vita
l to
supp
ort
indi
vidu
als
enga
ged
in p
ract
ice
deve
lopm
ent.
21
OVE
RVI
EW 2
007-2
013
Tabl
e 2
.2(b
) A
n an
alys
is o
f ac
tivi
ties
und
er C
ultu
re C
hang
e, u
sing
RE-
AIM
Act
ivit
yR
each
Ef
fect
iven
ess
Ado
ptio
n Im
plem
enta
tion
M
aint
enan
ce
Pra
ctic
e D
evel
opm
ent
Pro
gram
me
226 h
ealth
care
prof
essi
onal
s
part
icip
ated
8 B
and
1 A
cute
Hos
pita
ls p
artic
ipat
ed:
•
The
Mat
er
•
Talla
ght
•
Gal
way
Uni
vers
ity
•
St.
Jam
es’s
•
Mid
- Wes
tern
(Doo
rado
yle)
•
Cor
k U
nive
rsity
•
Con
nolly
•
Bea
umon
t
2 N
ursi
ng H
omes
part
icip
ated
:
Ben
eavi
n N
ursi
ng H
ome
Chu
rchv
iew
Nur
sing
Hom
e
Part
icip
ants
dev
elop
ed:
•
A be
tter
und
erst
andi
ng
of e
nd-o
f-life
car
e
prac
tices
.
•
Con
fiden
ce t
o
supp
ortiv
ely
chal
leng
e
poor
pra
ctic
e
•
Enha
nced
com
mun
icat
ion
skill
s to
sens
itive
ly r
elat
e to
the
dyin
g pe
rson
& fam
ily.
•
Cap
aciti
es t
o sh
are
lear
ning
with
the
ir
colle
ague
s
The
follo
win
g en
gage
d in
the
Prog
ram
me:
•
10 A
cute
Hos
pita
ls
•
1 h
ospi
ce in
the
Nor
th W
est
•
4 C
omm
unity
Hos
pita
ls,
•
2 N
ursi
ng H
omes
•
13 in
telle
ctua
l
disa
bilit
y se
rvic
es
•
50 in
divi
dual
part
icip
ants
in
the
Mid
land
s an
d S
outh
-
East
Part
icip
ants
use
d pr
actic
e
deve
lopm
ent
proc
esse
s to
faci
litat
e:
•
Crit
ical
rev
iew
of
envi
ronm
ents
to
eval
uate
wha
t cl
inic
al w
ork
area
s fe
el
like
for
a dy
ing
patie
nt &
the
ir
fam
ily.
•
The
use
of p
erso
n-ce
ntre
d
lang
uage
whe
n ad
dres
sing
patie
nts/
resi
dent
s &
fam
ilies
, and
com
mun
icat
ing
with
oth
er t
eam
mem
bers
•
Enha
nced
leve
ls o
f
Indi
vidu
alis
ed c
are
plan
ning
.
•
The
use
of v
alid
ated
too
ls t
o
criti
cally
eva
luat
e pr
actic
es
and
chan
ge
22
par
ticip
ants
tra
ined
as P
ract
ice
Dev
elop
men
t
Faci
litat
ors.
‘Thi
s pr
oces
s ov
er a
nyth
ing
else
I ha
ve d
one
for
year
s ha
s
affe
cted
the
way
I re
flect
, act
and
the
lang
uage
I us
e, t
he w
ay
I thi
nk a
nd w
ork,
how
I se
e m
y
life,
wha
t an
d w
here
are
my
prio
ritie
s. I
am in
a b
ette
r sp
ace
for
it’.
Prac
tice
Dev
elop
men
t
Part
icip
ant
Hos
pita
ls in
volv
ed
have
edu
cate
d pr
actic
e
deve
lopm
ent
faci
litat
ors
with
in t
heir
staf
f,
who
are
cap
able
of
faci
litat
ing
furt
her
prac
tice
deve
lopm
ent
initi
ativ
es.
The
exte
nt t
o w
hich
hosp
itals
will
be
prep
ared
to f
ree
staf
f (p
artic
ular
ly
nurs
ing
staf
f) t
o
part
icip
ate
is a
n is
sue.
Man
agem
ent
supp
ort
is
vita
l to
supp
ort
indi
vidu
als
enga
ged
in p
ract
ice
deve
lopm
ent.
Ethi
cal F
ram
ewor
kAv
aila
ble
as a
n
8-m
odul
e on
line
docu
men
t, w
ith
acco
mpa
nyin
g st
udy
sess
ions
.
Avai
labl
e as
an
acad
emic
tex
t bo
ok.
The
Fram
ewor
k is
use
ful,
rele
vant
and
acc
essi
ble.
The
Fram
ewor
k in
spire
d
the
deve
lopm
ent
of t
he
M.S
c. in
End
-of-L
ife E
thic
s
at U
CC
.
Unc
lear
to
wha
t
exte
nt s
taff w
orki
ng
in h
ospi
tals
and
oth
er
heal
thca
re s
ettin
gs a
re
awar
e of
thi
s re
sour
ce.
Unc
lear
to
wha
t ex
tent
it
is u
sed.
The
Fram
ewor
k do
cum
ent
is
acce
ssib
le o
nlin
e, b
ut n
o re
cord
is a
vaila
ble
of t
he n
umbe
r
of d
ownl
oads
or
iden
tity
of
dow
nloa
ders
.
The
Fram
ewor
k is
use
d as
the
case
boo
k by
M.S
c. P
allia
tive
Car
e st
uden
ts in
UC
C.
This
new
tw
o-ye
ar p
rogr
amm
e ha
d
its fi
rst
inta
ke o
f 9 s
tude
nts
in
20
11.
Two
scho
lars
hips
wer
e
offe
red
by t
he IH
F.
Ther
e is
sco
pe f
or
the
Fram
ewor
k,
the
Com
pete
nce
&
Com
pass
ion
map
and
the
anim
atio
n (A
Wis
h) t
o be
used
in t
rain
ing
for:
•
Med
ical
per
sonn
el
•
Wid
er h
ealth
care
pers
onne
l
•
Sta
ff t
rain
ing
and
indu
ctio
n in
hos
pita
ls
Key
Inf
orm
atio
n M
ater
ials
The
Com
pete
nce
&
Com
pass
ion
map
,
reso
urce
s fo
lder
and
shor
t an
imat
ion
(A
Wis
h) w
ere
dist
ribut
ed
acro
ss h
ospi
tals
and
othe
r he
alth
care
sett
ings
, and
to
prof
essi
onal
tra
inin
g
bodi
es, e
.g.
RC
PI.
Sta
ff h
ave
acce
ss t
o a
pock
et-s
ized
pra
ctic
al
guid
e an
d ot
her
reso
urce
s
to a
ssis
t th
em in
pro
vidi
ng
enha
nced
leve
ls o
f en
d-of
-
life
care
.
The
anim
atio
n m
akes
the
patie
nt’s
end
-of-l
ife
expe
rienc
e in
hos
pita
l ver
y
real
. An
ecdo
tal f
eedb
ack
has
been
ver
y po
sitiv
e.
The
exac
t ex
tent
to w
hich
the
map
,
reso
urce
s fo
lder
and
anim
atio
n ha
ve b
een
used
is u
nkno
wn.
Cop
ies
of t
he m
ap, t
he
reso
urce
s fo
lder
and
the
anim
atio
n w
ere
circ
ulat
ed
to h
ospi
tals
and
hea
lthca
re
sett
ings
par
ticip
atin
g in
the
Prog
ram
me,
and
are
als
o
avai
labl
e to
dow
nloa
d on
-line
.
Cul
ture
Cha
nge:
Sum
mar
y of
ach
ieve
men
ts a
nd c
halle
nges
Ove
r 4,5
00
hea
lthca
re s
taff
par
ticip
ated
in d
edic
ated
end
-of-l
ife c
are
trai
ning
, and
as
a re
sult,
rep
ort
bein
g m
ore
fam
iliar
with
end
-of-l
ife c
are
issu
es a
nd m
ore
confi
dent
in
deal
ing
with
pat
ient
s fa
cing
the
end
of
life
and
thei
r fa
mili
es.
8 m
ajor
acu
te h
ospi
tals
par
ticip
ated
in p
ract
ice
deve
lopm
ent
wor
k; h
owev
er, s
usta
inin
g th
is le
arni
ng c
ultu
re in
the
se b
usy
hosp
itals
is a
cha
lleng
e.
An e
thic
al f
ram
ewor
k no
w e
xist
s to
gui
de a
nd s
uppo
rt h
ealth
care
sta
ff in
volv
ed in
end
-of-l
ife c
are;
its
use
need
s to
be
mor
e w
idel
y pr
omot
ed.
A va
riety
of
prac
tical
info
rmat
ion
mat
eria
ls o
n en
d-of
-life
car
e ar
e no
w a
vaila
ble
to a
ll he
alth
care
sta
ff in
a v
arie
ty o
f he
alth
care
set
tings
.
22
THE
HO
SPI
CE
FRIE
ND
LY H
OS
PITA
LS P
RO
GR
AMM
E 2.4 Capacity Development
Figure 2.4 Capacity Development: key activities
2.4.1 Activities
Figure 2.4 above summarises the key activities undertaken in this area, which are as follows
1. Structures to support end-of-life care. These included the HFH Programme’s employment of either (a) regional or (b) hospital-based End-of-Life Care Development Coordinators (at CNM37 level) to take responsibility for progressing and winning support for the end-of-life care agenda. See Figure 2.5 for the location of these posts. These Coordinators were in post for an average of two years.
Figure 2.5 Location of End-of-Life Care Development Coordinator posts (full time/part time)
7 Clinical Nurse/Midwife Manager
Capacity Development
1. Structures to support End-of-Life Care 2. End-of-Life Care Development Plans3. HFH Community Hospitals Network4. HFH Acute Hospitals Network5. Design & Dignity projects6. Symbolic resources
23
OVE
RVI
EW 2
007-2
013An alternative approach was to charge an existing staff member with responsibility for
progressing end-of-life care. The first task of the designated person/Coordinator was to establish a hospital-based End-of-Life Care Standing Committee. The key initial task of these Standing Committees and their sub-committees was to get end-of-life care included in wider hospital plans.
2. End-of-Life Care Development Plans were developed and implemented by the hospital-based Standing Committees as the key vehicle to ensure progress on the implementation of the end-of-life agenda and specifically the HFH Quality Standards for End-of-Life Care in Hospitals. Once a plan was in place, the expectation was that it would be reported on quarterly.
3. The HFH Community Hospitals Network was established in 2009 with a small core group of Dublin-based community hospitals and community nursing units. Its purpose was to facilitate collaboration between these care settings and to identify common challenges and possible solutions in the provision of end-of-life care. Network members include representatives from participating centres: staff nurses, nurse managers, directors of nursing, healthcare assistants, doctors, allied health professionals and chaplains, as well as representatives of the HSE’s Older Persons Service, acute hospital geriatricians, community intervention teams, specialist palliative care services and advocacy groups. The group meets four times yearly, supported by a Community Hospital Development Coordinator, who is also responsible for rolling out the What Matters to Me training initiative, targeted at those working in community hospitals and long-term care settings.
4. The HFH Acute Hospitals Network was established in 2010 to develop the capacity of acute hospitals to meet the HFH Quality Standards for End-of-Life Care in Hospitals. Its purpose was to facilitate a collaborative approach to improving end-of-life care in acute hospitals nationally. Hospitals are represented on the Network by the Chair/Vice Chair of their HFH End-of-Life Care Standing Committee, and it also includes a representative of the HSE’s Clinical Programme for Palliative Care as well as an Acute Hospitals Manager. The Network meets three times a year. See Figure 2.6 for membership.
Figure 2.6 Members of the HFH Acute Hospitals Network
24
THE
HO
SPI
CE
FRIE
ND
LY H
OS
PITA
LS P
RO
GR
AMM
E 5. The Design and Dignity Grants Scheme was developed in 2010, jointly funded by HSE Estates and the IHF, to the tune of €1.5m. Its purpose was to develop a range of exemplar projects to guide the future development of hospital facilities of relevance to end-of-life care, by putting into practice the 2008 HFH Design and Dignity Guidelines. Initiatives funded ranged from extensive development projects, such as a significant renovation of Beaumont Hospital’s mortuary, to more modest refurbishment work, such as the creation of a bereavement/infant viewing room at St Luke’s Hospital in Kilkenny.
6. The symbolic resources produced for use in hospitals included: • a sign featuring the end-of-life spiral, to subtly notify staff that a patient is dying or
has died; • a mortuary trolley drape, used to promote respect and a sense of ceremony; • a mobile altar, to facilitate the provision of spiritual care on the ward; • a family ‘handover’ bag, for respectful return of a patient’s belongings to relatives;
and • a sympathy card to be sent by staff on a ward where a patient has died (preferably
before the hospital bill).
Figure 2.7 End-of-life spiral signage Figure 2.8 Trolley drape
Figure 2.9 Ward altar Figure 2.10 Family handover bag
25
OVE
RVI
EW 2
007-2
013
2.4
.2 A
naly
sis
of k
ey a
ctiv
itie
s un
der
Cap
acit
y D
evel
opm
ent, u
sing
RE-
AIM
Tabl
e 2
.3(a
) A
n an
alys
is o
f ac
tivi
ties
und
er C
apac
ity
Dev
elop
men
t, u
sing
RE-
AIM
Act
ivit
yR
each
Ef
fect
iven
ess
Ado
ptio
n Im
plem
enta
tion
M
aint
enan
ce
Str
uctu
res
to s
uppo
rt
end-
of-li
fe c
are
–
End-
of-L
ife C
are
Dev
elop
men
t C
oord
inat
ors
and
Sta
ndin
g C
omm
itte
es
Dev
elop
men
t
Coo
rdin
ator
pos
ts
serv
ed 1
8 a
cute
hosp
itals
. 8 a
cute
hosp
itals
had
a
dedi
cate
d C
oord
inat
or.
Ove
r 35 c
omm
unity
hosp
itals
loca
ted
arou
nd t
he c
ount
ry.
‘Lov
e an
d Ste
el’
wer
e re
quire
d of
the
Dev
elop
men
t
Coo
rdin
ator
s
(Cla
rk &
Gra
ham
,
2013)
End-
of-L
ife C
are
Sta
ndin
g
Com
mitt
ees
wer
e
esta
blis
hed
in 1
6 a
cute
hosp
itals
, with
con
sist
ent
atte
ndan
ce fro
m a
ll st
aff
grou
ps
9 o
f th
e 1
1 a
cute
hos
pita
ls
that
dev
elop
ed E
nd-o
f-Life
Car
e D
evel
opm
ent
Plan
s
had
the
supp
ort
of a
Coo
rdin
ator
.
21
sen
ior
man
ager
s
resp
onsi
ble
for
the
end-
of-li
fe c
are
agen
da in
21
acut
e ho
spita
l set
tings
.
Few
doc
tors
att
end
or
are
mem
bers
of ho
spita
l
Sta
ndin
g C
omm
ittee
s.
Hav
ing
Dev
elop
men
t
Coo
rdin
ator
s in
pos
t, w
hile
reso
urce
inte
nsiv
e, f
acili
tate
d
the
mor
e ra
pid
esta
blis
hmen
t of
the
Sta
ndin
g C
omm
ittee
s.
The
Coo
rdin
ator
rol
e w
as
chal
leng
ing.
with
a h
igh
turn
over
. A
lot
of t
ime
and
supp
ort
was
pro
vide
d to
the
Coo
rdin
ator
s by
cor
e
Prog
ram
me
staf
f.
The
ques
tion
aris
es a
s to
whe
ther
the
HFH
Pro
gram
me
shou
ld h
ave
soug
ht a
%
cont
ribut
ion
from
the
hos
pita
ls
for
the
Coo
rdin
ator
pos
t.
Coo
rdin
ator
pos
ts h
ave
been
re-e
stab
lishe
d w
ith h
ospi
tal
fund
ing
in 3
site
s: B
eaum
ont,
the
Mat
er a
nd t
he M
id-W
est
hosp
ital g
roup
. W
ork
is u
nder
way
to
re-e
stab
lish
2 f
urth
er
post
s.
Sus
tain
ing
mom
entu
m f
or
HFH
initi
ativ
es in
hos
pita
ls
whi
ch d
o no
t ha
ve t
he
supp
ort
of a
Coo
rdin
ator
is a
n is
sue
in b
usy
acut
e
hosp
itals
.
5 h
ospi
tals
hav
e in
dica
ted
that
the
y ar
e pr
epar
ed t
o
cont
ribut
e to
the
cos
t of
the
post
. Th
ere
may
als
o
be s
cope
for
oth
er p
osts
to b
e fu
nded
join
tly w
ith
hosp
itals
.
26
THE
HO
SPI
CE
FRIE
ND
LY H
OS
PITA
LS P
RO
GR
AMM
E
2.4
.2 A
naly
sis
of k
ey a
ctiv
itie
s un
der
Cap
acit
y D
evel
opm
ent, u
sing
RE-
AIM
Tabl
e 2
.3(a
) (c
onti
nued
) A
n an
alys
is o
f ac
tivi
ties
und
er C
apac
ity
Dev
elop
men
t, u
sing
RE-
AIM
Act
ivit
yR
each
Ef
fect
iven
ess
Ado
ptio
n Im
plem
enta
tion
M
aint
enan
ce
End-
of-L
ife C
are
Dev
elop
men
t P
lans
Dev
elop
men
t Pl
ans
in
plac
e in
12 s
ites
(11
publ
ic a
cute
hos
pita
ls,
1 p
rivat
e ho
spita
l).
Plan
s in
dev
elop
men
t
in 7
mor
e si
tes,
with
end
-of-l
ife c
are
obje
ctiv
es in
clud
ed in
thei
r an
nual
ser
vice
plan
s.
Hav
ing
a D
evel
opm
ent
Plan
in p
lace
with
in a
hos
pita
l
supp
orts
the
prio
ritis
atio
n
of e
nd-o
f-life
car
e is
sues
acro
ss t
he h
ospi
tal.
Dev
elop
men
t Pl
ans
in
plac
e in
hos
pita
ls:
•
Dub
lin (4)
•
Con
nolly
; M
ater
;
Mat
er P
rivat
e,
•
St
Jam
es’s
.
•
Nor
th E
ast
(2)
•
Our
Lad
y of
Lou
rdes
,
Dro
ghed
a; C
avan
/
Mon
agha
n H
ospi
tal
Gro
up.
•
Cor
k (1
) –
Mer
cy
•
The
Wes
t (1
)
•
Slig
o G
ener
al
•
The
Mid
Wes
t (4
)
•
Lim
eric
k, N
enag
h,
MW
Mat
erni
ty,
•
Enni
s.
Plan
s in
dev
elop
men
t
in:
•
Our
Lad
y’s,
Nav
an
•
Bea
umon
t
•
Sou
th T
ippe
rary
•
Wex
ford
Gen
eral
•
Gal
way
Uni
vers
ity
•
Mid
land
Reg
iona
l
(Por
tlaoi
se,
Tulla
mor
e)
Not
all
hosp
itals
hav
e re
ache
d
the
sam
e le
vel o
f pr
ogre
ss r
e an
End-
of-L
ife C
are
Dev
elop
men
t
Plan
.
Get
ting
end-
of-li
fe c
are
obje
ctiv
es in
to h
ospi
tals
’ an
nual
serv
ice
plan
s is
a p
ragm
atic
way
of e
nsur
ing
that
end
-of-l
ife c
are
conc
erns
are
on
thei
r ag
enda
.
Putt
ing
a de
dica
ted
End-
of-
Life
Car
e D
evel
opm
ent
Plan
in p
lace
at
a tim
e of
sca
rce
reso
urce
s is
a s
igni
fican
t
unde
rtak
ing,
rep
rese
ntin
g a
clea
r co
mm
itmen
t.
Som
e ho
spita
ls d
o no
t su
bmit
quar
terly
rep
orts
; in
the
se
case
s it
is n
ot k
now
n w
heth
er
the
Dev
elop
men
t Pl
an is
stil
l
bein
g us
ed.
Mon
itorin
g th
e
impl
emen
tatio
n of
the
plan
s in
pla
ce w
ill b
e ke
y.
Plan
s to
be
mon
itore
d on
an o
ngoi
ng b
asis
.
Wor
k al
so n
eeds
to
cont
inue
to
enco
urag
e
othe
rs t
o de
velo
p si
mila
r
plan
s.
27
OVE
RVI
EW 2
007-2
013
Tabl
e 2
.3(b
) A
n an
alys
is o
f ke
y ac
tivi
ties
und
er C
apac
ity
Dev
elop
men
t us
ing
RE-
AIM
Act
ivit
yR
each
Ef
fect
iven
ess
Ado
ptio
n Im
plem
enta
tion
M
aint
enan
ce
HFH
C
omm
unit
y H
ospi
tals
N
etw
ork
(Gre
ater
D
ublin
are
a)
Mem
bers
hip
grew
fro
m 7
to
26 in
the
per
iod
Nov
embe
r 2009-
May
2013.
26 h
ospi
tals
rec
eive
ong
oing
inpu
ts a
nd in
form
atio
n in
rel
atio
n
to t
he H
FH Q
ualit
y S
tand
ards
.
Mee
tings
pro
vide
a u
niqu
e
oppo
rtun
ity t
o ne
twor
k w
ith
peer
s.
Mem
bers
hip
focu
sed
on t
he
grea
ter
Dub
lin
area
.
11
wel
l-att
ende
d
mee
tings
of
the
Net
wor
k
(indi
vidu
al
atte
ndan
ce
reco
rds
not
kept
.)
Mee
tings
invo
lve:
•
inpu
t fr
om N
etw
ork
mem
bers
•
inpu
t fr
om H
FH P
rogr
amm
e st
aff
and
othe
rs
•
inpu
t fr
om s
peci
alis
ts, e
.g.
coro
ners
•
time
for
netw
orki
ng.
The
Net
wor
k is
wor
king
wel
l.
A ke
y ch
alle
nge
is t
o m
aint
ain
focu
s on
end
-of-l
ife c
are
rath
er
than
car
e in
gen
eral
.
Bas
ed o
n in
crea
sing
mem
bers
hip
and
good
atte
ndan
ce in
Dub
lin, t
here
may
be
scop
e to
est
ablis
h
a C
omm
unity
Hos
pita
ls
Net
wor
k/s
in a
noth
er r
egio
n/s.
Res
ourc
es w
ould
be
requ
ired
to
supp
ort
it.
HFH
Acu
te
Hos
pita
ls
Net
wor
k (N
atio
nal)
Mem
bers
hip
has
grow
n to
31 a
cute
publ
ic h
ospi
tals
(rep
rese
ntin
g 62%
of t
he t
otal
) pl
us
1 p
rivat
e ho
spita
l,
with
2 m
ore
due
to jo
in.
Part
icip
ants
get
sup
port
in
rela
tion
to t
he H
FH Q
ualit
y
Sta
ndar
ds.
Inte
rnal
sur
veys
of m
embe
rs
(und
erta
ken
by H
FH s
taff) fo
und
awar
enes
s of
:
•
how
to
prep
are
End-
of-L
ife
Car
e D
evel
opm
ent
Plan
;
•
corr
ect
use
of e
nd-o
f-life
car
e
sym
bol
•
valu
e of
HFH
Pro
gram
me
trai
ning
.
The
Net
wor
k pr
ovid
es a
uni
que
oppo
rtun
ity t
o en
gage
with
pers
onne
l fro
m t
he H
SE’
s C
linic
al
Prog
ram
me
for
Palli
ativ
e C
are
and
with
pee
rs.
Hos
pita
ls in
volv
ed
from
acr
oss
Irela
nd.
Net
wor
k ha
s m
et
on 1
2 o
ccas
ions
.
Mee
tings
gen
eral
ly
wel
l att
ende
d
(indi
vidu
al
atte
ndan
ce le
vels
not
kept
).
Initi
ally,
Net
wor
k m
eetin
gs in
volv
ed t
wo
days
and
an
over
nigh
t st
ay, w
hich
was
cons
ider
ed a
use
ful,
if co
stly,
net
wor
king
oppo
rtun
ity.
As t
ime
prog
ress
ed m
eetin
gs h
ave
been
con
dens
ed in
to a
day
to
enab
le
busy
par
ticip
ants
to
bett
er b
alan
ce t
heir
invo
lvem
ent
in t
he N
etw
ork
with
the
ir
othe
r co
mm
itmen
ts.
‘I am
aw
are
that
a n
umbe
r of
Net
wor
k
part
icip
ants
att
end
mee
tings
in t
heir o
wn
time,
bec
ause
the
y fin
d th
e m
eetin
gs u
sefu
l
and
beca
use
thei
r w
orkp
lace
will
not
giv
e
them
tim
e to
att
end’
.
(HFH
Pro
gram
me
Man
ager
, Apr
il 2013)
Mai
ntai
ning
the
Net
wor
k is
criti
cal t
o pr
ovid
ing
ongo
ing
supp
ort
for
the
impl
emen
tatio
n
of t
he H
FH Q
ualit
y S
tand
ards
.
Link
s be
twee
n th
e N
etw
ork,
its M
embe
rs a
nd t
he H
SE’
s
Clin
ical
Pro
gram
me
for
Palli
ativ
e
Car
e ne
ed t
o co
ntin
ue t
o be
deve
lope
d.
The
Net
wor
k co
uld
be
deve
lope
d as
a s
uppo
rt a
nd
test
ing
grou
nd f
or t
he p
olic
ies
and
prac
tices
of
the
HS
E’s
Clin
ical
Pro
gram
me
for
Palli
ativ
e
Car
e.
28
THE
HO
SPI
CE
FRIE
ND
LY H
OS
PITA
LS P
RO
GR
AMM
E
Tabl
e 2
.3(c
) A
n an
alys
is o
f ke
y ac
tivi
ties
und
er C
apac
ity
Dev
elop
men
t, u
sing
RE-
AIM
Act
ivit
yR
each
Ef
fect
iven
ess
Ado
ptio
n Im
plem
enta
tion
M
aint
enan
ce
Des
ign
& D
igni
ty p
roje
cts
11 p
roje
cts
shar
ed
€1.5
m.
fund
ing.
Proj
ects
var
ied
from
exte
nsiv
e de
velo
pmen
t
wor
k, e
.g.
the
crea
tion
of v
iew
ing
room
s
and/
or f
amily
roo
ms
to m
ore
mod
est
refu
rbis
hmen
t w
ork.
The
full
valu
e of
the
Des
ign
and
Dig
nity
gra
nts
sche
me
has
yet
to b
e kn
own,
with
just
3 p
roje
cts
com
plet
ed.
Six
mor
e ar
e to
be
com
plet
ed b
y en
d 2
01
3;
and
2 m
ore
in 2
01
4
This
bui
ldin
g ha
s …
giv
en
us a
spa
ce t
hat
is d
igni
fied,
that
is
brig
ht, t
hat
is a
iry, t
hat’s
embr
acin
g of
all
relig
ions
and
none
.
Mar
gare
t M
cKie
rnan
Assi
stan
t D
irect
or o
f
Nur
sing
Mer
cy U
nive
rsity
Hos
pita
l
Proj
ects
wer
e fu
nded
in
hosp
itals
in:
Dub
lin (4
)
the
Wes
t (4
)
the
Sou
th (2
)
the
Nor
th E
ast
(1)
Bef
ore
we
had
thes
e
room
s, w
e’d
have
to
brin
g fa
mili
es fro
m t
he
room
whe
re w
e br
eak
the
bad
new
s to
the
m
on t
o th
e co
rrid
or.
Clio
na O
’Bei
rne
Clin
ical
Nur
se M
anag
er
St
Jam
es’s
Hos
pita
l
Appl
ican
ts r
arel
y m
ade
prov
isio
n
for
cont
inge
ncie
s, o
r fo
r
addi
tiona
l cos
ts a
ssoc
iate
d w
ith
the
use
of m
ater
ials
acc
epta
ble
to t
he In
fect
ion
Con
trol
Tea
m.
As a
con
sequ
ence
, man
y
proj
ects
had
to
mak
e ad
ditio
nal
requ
ests
for
fina
ncia
l sup
port
.
The
fam
ily r
oom
is a
won
derf
ul
addi
tion
to t
he w
ard
.– t
here
was
now
here
to
rela
x w
hen
I was
here
. The
pic
ture
s ar
e be
autif
ul
and
a gr
eat
addi
tion
to t
he r
oom
.
Wel
l don
e on
all
the
grea
t w
ork!
Mat
er H
ospi
tal P
atie
nt
By
early
2014, 1
1
exem
plar
pro
ject
s w
ill
be in
pla
ce w
hich
can
be u
sed
as g
uide
s fo
r
the
futu
re d
esig
n an
d
deve
lopm
ent
of e
nd-o
f-life
care
fac
ilitie
s.
It is
unl
ikel
y in
the
curr
ent
clim
ate
that
muc
h
addi
tiona
l inf
rast
ruct
ural
deve
lopm
ent
will
tak
e
plac
e in
the
sho
rt t
erm
.
A st
rong
wor
king
part
ners
hip
has
been
esta
blis
hed
betw
een
the
HFH
Pro
gram
me
and
HS
E
Esta
tes.
29
OVE
RVI
EW 2
007-2
013
Tabl
e 2
.3(c
) A
n an
alys
is o
f ke
y ac
tivi
ties
und
er C
apac
ity
Dev
elop
men
t, u
sing
RE-
AIM
Act
ivit
yR
each
Ef
fect
iven
ess
Ado
ptio
n Im
plem
enta
tion
M
aint
enan
ce
Des
ign
& D
igni
ty p
roje
cts
11 p
roje
cts
shar
ed
€1.5
m.
fund
ing.
Proj
ects
var
ied
from
exte
nsiv
e de
velo
pmen
t
wor
k, e
.g.
the
crea
tion
of v
iew
ing
room
s
and/
or f
amily
roo
ms
to m
ore
mod
est
refu
rbis
hmen
t w
ork.
The
full
valu
e of
the
Des
ign
and
Dig
nity
gra
nts
sche
me
has
yet
to b
e kn
own,
with
just
3 p
roje
cts
com
plet
ed.
Six
mor
e ar
e to
be
com
plet
ed b
y en
d 2
01
3;
and
2 m
ore
in 2
01
4
This
bui
ldin
g ha
s …
giv
en
us a
spa
ce t
hat
is d
igni
fied,
that
is
brig
ht, t
hat
is a
iry, t
hat’s
embr
acin
g of
all
relig
ions
and
none
.
Mar
gare
t M
cKie
rnan
Assi
stan
t D
irect
or o
f
Nur
sing
Mer
cy U
nive
rsity
Hos
pita
l
Proj
ects
wer
e fu
nded
in
hosp
itals
in:
Dub
lin (4
)
the
Wes
t (4
)
the
Sou
th (2
)
the
Nor
th E
ast
(1)
Bef
ore
we
had
thes
e
room
s, w
e’d
have
to
brin
g fa
mili
es fro
m t
he
room
whe
re w
e br
eak
the
bad
new
s to
the
m
on t
o th
e co
rrid
or.
Clio
na O
’Bei
rne
Clin
ical
Nur
se M
anag
er
St
Jam
es’s
Hos
pita
l
Appl
ican
ts r
arel
y m
ade
prov
isio
n
for
cont
inge
ncie
s, o
r fo
r
addi
tiona
l cos
ts a
ssoc
iate
d w
ith
the
use
of m
ater
ials
acc
epta
ble
to t
he In
fect
ion
Con
trol
Tea
m.
As a
con
sequ
ence
, man
y
proj
ects
had
to
mak
e ad
ditio
nal
requ
ests
for
fina
ncia
l sup
port
.
The
fam
ily r
oom
is a
won
derf
ul
addi
tion
to t
he w
ard
.– t
here
was
now
here
to
rela
x w
hen
I was
here
. The
pic
ture
s ar
e be
autif
ul
and
a gr
eat
addi
tion
to t
he r
oom
.
Wel
l don
e on
all
the
grea
t w
ork!
Mat
er H
ospi
tal P
atie
nt
By
early
2014, 1
1
exem
plar
pro
ject
s w
ill
be in
pla
ce w
hich
can
be u
sed
as g
uide
s fo
r
the
futu
re d
esig
n an
d
deve
lopm
ent
of e
nd-o
f-life
care
fac
ilitie
s.
It is
unl
ikel
y in
the
curr
ent
clim
ate
that
muc
h
addi
tiona
l inf
rast
ruct
ural
deve
lopm
ent
will
tak
e
plac
e in
the
sho
rt t
erm
.
A st
rong
wor
king
part
ners
hip
has
been
esta
blis
hed
betw
een
the
HFH
Pro
gram
me
and
HS
E
Esta
tes.
Sym
bolic
res
ourc
esR
esou
rces
use
d
in o
ver
20 a
cute
hosp
itals
and
var
ious
com
mun
ity h
ospi
tals
arou
nd t
he c
ount
ry.
Res
ourc
es m
ake
a
differ
ence
to
fam
ilies
and
to s
taff e
ngag
ed in
prov
idin
g en
d-of
-life
car
e.
… A
ppro
pria
te s
ymbo
ls…
rem
ind
staf
f th
at a
res
iden
t
was
rec
eivi
ng e
nd-o
f-life
care
. Thi
s w
as a
sen
sitiv
e
way
of
rem
indi
ng s
taff
, in
a
busy
& p
ossi
bly
nois
y un
it,
that
a r
esid
ent
was
dyi
ng’
HIQ
A In
spec
tion
Rep
ort
Clo
naki
lty C
omm
unity
Hos
pita
l
Ther
e ha
s be
en a
goo
d
upta
ke o
f re
sour
ces:
End-
of-li
fe s
pira
l sig
n:
20
hos
pita
ls.
Trol
ley
drap
e &
fam
ily
hand
over
bag
: 1
7
hosp
itals
Sym
path
y ca
rd: 1
9
hosp
itals
.
Rec
ords
are
not
kep
t in
com
mun
ity h
ospi
tals
/
long
-sta
y ca
re s
ettin
gs.
Sim
plic
ity a
nd p
ract
ical
ity o
f
reso
urce
s ha
s m
ade
thei
r
usef
ulne
ss a
ppar
ent.
In 2
012 t
he H
FH P
rogr
amm
e
publ
ishe
d gu
idel
ines
on
the
corr
ect
use
of t
he e
nd-o
f-life
spira
l sym
bol.
Que
stio
ns e
xist
as
to w
hy
appr
oxim
atel
y 30%
of
acut
e
hosp
itals
par
ticip
atin
g in
the
Prog
ram
me
are
not
usin
g th
ese
reso
urce
s.
You’
re o
n a
war
d ...
fire
figh
ting,
you
don’
t ha
ve t
ime
to s
ay
‘how
cou
ld w
e be
doi
ng t
hing
s
diff
eren
tly?’
but
whe
n so
meb
ody
sees
the
han
dove
r ba
g th
ey’re
alw
ays,
like
, ‘oh
yea
h, I
alw
ays
had
a bi
t of
an
issu
e w
ith t
he
plas
tic b
ag a
ctua
lly, h
ere’
s a
prac
tical
sol
utio
n’
Inte
rvie
w 1
8, (
Cla
rk &
Gra
ham
,
20
13)
The
sim
plic
ity, p
ract
ical
ity
and
rela
tivel
y lo
w c
ost
of
thes
e re
sour
ces
mak
e
it lik
ely
that
the
y w
ill
cont
inue
to
be u
sed.
It is
har
d to
kno
w if
the
reso
urce
s ar
e be
ing
used
cons
iste
ntly.
30
THE
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Capacity Development: Summary of achievements and challenges
• The establishment of hospital End-of-Life Care Standing Committees was accelerated with the support
of dedicated End-of-Life Care Development Coordinators, particularly in the early stages of the HFH
Programme’s development.
• Getting End-of-Life Care Development Plans put in place has been a challenge: about 35% of the acute
public hospitals participating in the HFH Programme have achieved this. A further 22% are working on
plans. Others have opted to include end-of-life care objectives in existing service plans. It remains to
be seen which is the more effective route to progressing the end-of-life care agenda.
• Membership of the Community Hospitals Network and Acute Hospitals Networks has grown. Meetings
are well attended, suggesting they are useful fora.
• 11 Design & Dignity projects have been funded. When fully completed, these will enhance the physical
environment of end-of-life care facilities for patients, their families and the staff supporting them in
eight locations around the country.
• A variety of symbolic end-of-life care resources are in place and in use across a range of healthcare
settings.
2.5 Influencing the Health System 2.5.1 ActivitiesA key concern of the HFH Programme has been to liaise and work with the HSE and HIQA in order to ensure that the learning generated by the Programme in relation to end-of-life care in hospitals and long-stay care settings transferred at national level to these bodies.
Figure 2.11 provides a chronological overview of developments within the health system and the HFH Programme, and the interaction between them, which have implications for end-of-life care.
My mother died in the busy stroke unit at an overstretched hospital but nurses behaved in keeping with what is a profound, almost sacred moment for the family. They lit candles and placed a Celtic “Triskele” (HFH end-of-life spiral symbol) on the door of her room to alert other staff and patients. They covered her in an elegant purple drape and, when we eventually left, they hugged us, handing over a woven bag, her things neatly folded inside. When it seems unbearable that your mother has just died and the rest of the world is carrying on as normal, these gestures are comforting. Butler, K. The Independent, 3 September, 2013: At that hour: dealing with death
The Irish health system is currently engaged in an ongoing process of change and transformation at every level. The key focus is to ensure that all our resources are directed towards better services for our population. Síle Fleming, Assistant National HR Director for Organisation Development & Design,
31
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007-2
013Figure 2.11 Key developments within the health system and the HFH Programme, and their
interaction, with implications for end-of-life care
Year Health system developments
Points of contact/collaboration HFH Programme developments
2005 HSE established. Joint IHF and HSE pilot project,
Care for People Dying in Hospitals,
in Our Lady of Lourdes Hospital,
Drogheda.
Funding secured for HFH Programme.
2006 HSE agree to be involved in HFH.
2007 HIQA established. From inception to Oct. 2007 the
HFH National Steering Committee
chaired by a former Deputy Chief
Executive of the HSE
HFH Programme launched.
Work begins on the development of
HFH Quality Standards for End-of-Life
Care.
2008 Publication by the HFH and National
Council on Ageing and Older People
of the study, End-of-Life Care for
Older People in Acute and Long-Stay
Care Settings in Ireland.
2009 HIQA launch National Quality Standards for Residential Care Settings for Older People in Ireland.
HFH Community Hospitals Network
established.
2010 Launch of the jointly funded HSE/
HFH Design and Dignity Challenge
Fund
HFH Acute Hospital Network
established.
Launch of Quality Standards for End-
of-Life Care in Hospitals and 2008-9
Baseline Review
2011 Establishment of HSE Directorates of (a) Clinical Strategy and Programmes and (b) Quality and Patient Safety.
Meeting with HSE CEO to discuss implications of HFH Quality Standards.
Workshop held to explore potential for closer collaboration between the IHF/
HFH Programme and the HSE in the area of end-of-life and palliative care.
HFH Programme and HSE begin work on an end-of-life audit and review
system. The work is supported by a Project Advisory Group which includes
representatives of HIQA.
2012-
2013
HIQA publication of general healthcare standards – HFH Quality Standards acknowledged.
Joint work continues on the development of the end-of-life audit system.
The HSE Clinical Programme for Palliative Care, the All Ireland Institute for
Hospice and Palliative Care, the IHF and the Irish Association for Palliative
Care work together to oversee the development of a Palliative Care
Competence Framework.
HSE palliative care personnel regularly attend Acute Hospitals Network
meetings.
32
THE
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CE
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E Figure 2.12 Influencing the Health System: key activities
Figure 2.12 above summaries the activities undertaken in this area, which are as follows:
1. Engagement with the HSE and HIQA Cooperation between the Irish Hospice Foundation and the national health service on end-of-life care in hospitals pre-dates the HFH Programme proper, having begun with the joint pilot project (Care for People Dying in Hospitals) which ran in Our Lady of Lourdes, Drogheda, from 2004 to 2006. For the HFH Programme, however, sustaining that engagement was challenging, given that the Programme got under way against a backdrop of significant re-structuring of the health service, and in the absence of a dedicated unit within it with responsibility for end-of-life care. The year 2010 saw the first substantial practical collaboration between the Programme and HSE, with the joint funding of the Design & Dignity Fund, and with the development of the Practice Development Programme. In 2011 a meeting took place with the new CEO of the HSE to discuss the potential for wider application of the HFH Quality Standards and greater collaboration between the HSE and the Programme. This was made easier by the establishment in 2011 of the HSE’s Clinical Strategy and Programmes Directorate and Quality and Patient Safety Directorate. Since then, there has been more ongoing engagement, particularly in relation to the Acute Hospitals Network. Engagement with HIQA has also progressed over this time, and HIQA and the HSE are now actively involved in the development of the end-of-life audit and review process.
2. Supporting the development of a Palliative Care Competence Framework The HSE’s Clinical Programme for Palliative Care, the All-Ireland Institute of Hospice and Palliative Care (AIIHPC), the IHF and the Irish Association for Palliative Care (IAPC) are partners on the Steering Group for the HSE Palliative Care Competence Framework, supporting, guiding and overseeing this work. Initially, this framework was to focus on nursing, but a decision was made subsequently to extend it to other healthcare disciplines, including medicine, social work, occupational therapy, pharmacy, physiotherapy and healthcare assistance. The objective is ‘to generate a clear framework to support evidence-based, safe and effective palliative care for generalist and specialist practitioners, irrespective of place of practice’.8. An earlier project sponsored by the HFH Programme and the HSE Office of Nursing and Midwifery, which focused on end-of-life care education (pre- and post-registration)
8 Connolly, M. & Charnley, K. (undated) A Palliative Care Competence Framework for Ireland- Implications for Public Health Nursing.
Influencing the System• Engagement with HSE & HIQA• Supporting the Development of Palliative Care Competence Framework• Awards to recognise change• Engagement with politicians• Media work
33
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013and continuing professional development, was subsumed into this framework.
3. Engagement with politicians and the political system The HFH Programme team, together with IHF staff engaged in advocacy, have met with politicians from across the political spectrum throughout the lifetime of the Programme to try and win support for enhanced end-of-life care across healthcare settings. In 2008, for example, the HFH team took Enda Kenny, TD (in his capacity as leader of the Fine Gael party) to visit Leopardstown Park Hospital and see the situation there. This led him to raise the issue of the poor conditions he had witnessed at Leader’s Questions in the Dáil. In 2009, the HFH Programme worked to support independent Senator, Ronan Mullen, to jointly sponsor a debate under Private Members’ Business in the Senate on end-of-life care, with reference to the HFH National Audit of End-of-Life Care in Hospitals and Quality Standards for End-of-Life Care in Hospitals. In 2010 the Programme had the (then) Minister for Health & Children, Mary Harney, TD, launch the joint HFH Programme/HSE Design and Dignity Challenge Fund, while in the same year the former President, Mary McAleese, wrote the foreword to the HFH Quality Standards.
4. Raising the profile of end-of-life care in the media While the HFH Programme did not have a specific targeted communications strategy, it was successful in securing positive newspaper coverage of its work and of the end-of-life care agenda. The use of high-profile public figures, particularly in the early stages of the Programme, was a good technique for attracting media coverage. As part of its work to raise the profile of end-of-life issues, the IHF sponsored a HFH Award as part of the Irish Healthcare Awards. The first award was made in 2012 to the Mater Hospital.
34
THE
HO
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CE
FRIE
ND
LY H
OS
PITA
LS P
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GR
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E
2.5
.2 A
naly
sis
of k
ey a
ctiv
itie
s un
der
Influ
enci
ng t
he H
ealt
h Sys
tem
, usi
ng R
E-A
IM
Tabl
e 2
.4(a
) A
n an
alys
is o
f ac
tivi
ties
und
er In
fluen
cing
the
Hea
lth
Sys
tem
, usi
ng R
E-A
IM
Act
ivit
yR
each
Ef
fect
iven
ess
Ado
ptio
n Im
plem
enta
tion
M
aint
enan
ce
Enga
gem
ent
with
the
HS
E an
d H
IQA
On-
goin
g en
gage
men
t
with
:
HS
E Es
tate
s.
HS
E C
linic
al S
trat
egy
&
Prog
ram
mes
Dire
ctor
ate,
incl
. th
e C
linic
al
Prog
ram
me
for
Palli
ativ
e
Car
e.
HS
E Q
ualit
y &
Pat
ient
Saf
ety
Dire
ctor
ate.
HIQ
A (in
rel
atio
n to
the
end-
of-li
fe c
are
audi
t).
HS
E an
d H
IQA
invo
lvem
ent
is c
ritic
al t
o en
surin
g th
at
the
lear
ning
aris
ing
from
the
HFH
Pro
gram
me
is
tran
slat
ed in
to n
atio
nal
polic
y an
d pr
actic
e.
Use
ful l
inka
ges
have
bee
n
esta
blis
hed.
Exam
ples
of st
rong
part
ners
hip
incl
ude
wor
k on
the
new
aud
it
and
revi
ew s
yste
m a
nd
activ
ities
rel
ated
to
Des
ign
& D
igni
ty.
In t
he P
rogr
amm
e’s
star
t-up
phas
e,
muc
h w
as d
one
to
enga
ge w
ith t
he
HS
E at
cor
pora
te
leve
l. Th
is w
aned
som
ewha
t in
subs
eque
nt y
ears
for
a va
riety
of
reas
ons,
som
e
of t
hem
bey
ond
the
Prog
ram
me’
s
cont
rol.
The
esta
blis
hmen
t of
rele
vant
ded
icat
ed
Dire
ctor
ates
with
in
the
HS
E ha
s si
nce
mad
e en
gage
men
t
easi
er.
Sus
tain
ing
the
enga
gem
ent
of t
he H
SE
and
othe
r ke
y
orga
nisa
tions
is c
ritic
al t
o
prom
otin
g th
e en
d-of
-life
car
e
agen
da.
The
HFH
Pro
gram
me
will
ens
ure
a pl
anne
d ap
proa
ch is
in p
lace
to
faci
litat
e on
goin
g en
gage
men
t.
Cha
nges
in r
elat
ion
to t
he H
SE’
s
futu
re d
irect
ion,
org
anis
atio
n an
d
stru
ctur
es w
ill c
ontin
ue t
o po
se
chal
leng
es.
Pal
liati
ve C
are
Com
pete
nce
Fram
ewor
k
Whe
n co
mpl
ete,
the
Fram
ewor
k w
ill c
over
nurs
ing,
med
icin
e, s
ocia
l
wor
k, o
ccup
atio
nal
ther
apy, p
harm
acy,
phys
ioth
erap
y an
d
heal
thca
re a
ssis
tanc
e.
The
activ
e in
volv
emen
t
in t
he F
ram
ewor
k’s
deve
lopm
ent
of t
he
HS
E’s
Clin
ical
Pro
gram
me
for
Palli
ativ
e C
are;
the
AIIH
PC; th
e IH
F an
d th
e
IAPC
, is
ensu
ring
that
bes
t
use
is m
ade
of e
xist
ing
skill
s an
d co
mpe
tenc
ies.
Whe
n co
mpl
ete,
the
Fram
ewor
k w
ill e
nsur
e
that
pal
liativ
e ca
re
is e
mbe
dded
in t
he
com
pete
ncie
s of
a v
arie
ty
of h
ealth
and
soc
ial c
are
prof
essi
onal
s.
The
lead
pro
vide
d
by t
he H
SE
in t
he
deve
lopm
ent
of
the
Fram
ewor
k
shou
ld s
uppo
rt it
s
impl
emen
tatio
n in
prac
tice.
35
OVE
RVI
EW 2
007-2
013
2.5
.2 A
naly
sis
of k
ey a
ctiv
itie
s un
der
Influ
enci
ng t
he H
ealt
h Sys
tem
, usi
ng R
E-A
IM
Tabl
e 2
.4(a
) A
n an
alys
is o
f ac
tivi
ties
und
er In
fluen
cing
the
Hea
lth
Sys
tem
, usi
ng R
E-A
IM
Act
ivit
yR
each
Ef
fect
iven
ess
Ado
ptio
n Im
plem
enta
tion
M
aint
enan
ce
Enga
gem
ent
with
the
HS
E an
d H
IQA
On-
goin
g en
gage
men
t
with
:
HS
E Es
tate
s.
HS
E C
linic
al S
trat
egy
&
Prog
ram
mes
Dire
ctor
ate,
incl
. th
e C
linic
al
Prog
ram
me
for
Palli
ativ
e
Car
e.
HS
E Q
ualit
y &
Pat
ient
Saf
ety
Dire
ctor
ate.
HIQ
A (in
rel
atio
n to
the
end-
of-li
fe c
are
audi
t).
HS
E an
d H
IQA
invo
lvem
ent
is c
ritic
al t
o en
surin
g th
at
the
lear
ning
aris
ing
from
the
HFH
Pro
gram
me
is
tran
slat
ed in
to n
atio
nal
polic
y an
d pr
actic
e.
Use
ful l
inka
ges
have
bee
n
esta
blis
hed.
Exam
ples
of st
rong
part
ners
hip
incl
ude
wor
k on
the
new
aud
it
and
revi
ew s
yste
m a
nd
activ
ities
rel
ated
to
Des
ign
& D
igni
ty.
In t
he P
rogr
amm
e’s
star
t-up
phas
e,
muc
h w
as d
one
to
enga
ge w
ith t
he
HS
E at
cor
pora
te
leve
l. Th
is w
aned
som
ewha
t in
subs
eque
nt y
ears
for
a va
riety
of
reas
ons,
som
e
of t
hem
bey
ond
the
Prog
ram
me’
s
cont
rol.
The
esta
blis
hmen
t of
rele
vant
ded
icat
ed
Dire
ctor
ates
with
in
the
HS
E ha
s si
nce
mad
e en
gage
men
t
easi
er.
Sus
tain
ing
the
enga
gem
ent
of t
he H
SE
and
othe
r ke
y
orga
nisa
tions
is c
ritic
al t
o
prom
otin
g th
e en
d-of
-life
car
e
agen
da.
The
HFH
Pro
gram
me
will
ens
ure
a pl
anne
d ap
proa
ch is
in p
lace
to
faci
litat
e on
goin
g en
gage
men
t.
Cha
nges
in r
elat
ion
to t
he H
SE’
s
futu
re d
irect
ion,
org
anis
atio
n an
d
stru
ctur
es w
ill c
ontin
ue t
o po
se
chal
leng
es.
Pal
liati
ve C
are
Com
pete
nce
Fram
ewor
k
Whe
n co
mpl
ete,
the
Fram
ewor
k w
ill c
over
nurs
ing,
med
icin
e, s
ocia
l
wor
k, o
ccup
atio
nal
ther
apy, p
harm
acy,
phys
ioth
erap
y an
d
heal
thca
re a
ssis
tanc
e.
The
activ
e in
volv
emen
t
in t
he F
ram
ewor
k’s
deve
lopm
ent
of t
he
HS
E’s
Clin
ical
Pro
gram
me
for
Palli
ativ
e C
are;
the
AIIH
PC; th
e IH
F an
d th
e
IAPC
, is
ensu
ring
that
bes
t
use
is m
ade
of e
xist
ing
skill
s an
d co
mpe
tenc
ies.
Whe
n co
mpl
ete,
the
Fram
ewor
k w
ill e
nsur
e
that
pal
liativ
e ca
re
is e
mbe
dded
in t
he
com
pete
ncie
s of
a v
arie
ty
of h
ealth
and
soc
ial c
are
prof
essi
onal
s.
The
lead
pro
vide
d
by t
he H
SE
in t
he
deve
lopm
ent
of
the
Fram
ewor
k
shou
ld s
uppo
rt it
s
impl
emen
tatio
n in
prac
tice.
Rai
sing
the
pro
file
of E
nd-o
f-Life
Car
e P
rofil
e in
the
Med
ia
Sin
ce it
s la
unch
in M
ay
2007 t
o Ap
ril 2
013 t
he
Prog
ram
me
achi
eved
the
follo
win
g co
vera
ge:
Cov
erag
e of
the
Lau
nch
of
the
Ethi
cal F
ram
ewor
k on
RTE
Rad
io 1
’s P
rogr
amm
e.
Toda
y w
ith P
at K
enny
67 a
rtic
les
in t
he n
atio
nal
med
ia /
rad
io/T
V
incl
udin
g 23 e
dito
rials
in
the
Irish
Tim
es
18 a
rtic
les
in t
he
heal
th/
med
ical
med
ia
20 a
rtic
les
in t
he lo
cal
pape
rs/r
adio
and
onl
ine
med
ia
Ong
oing
rep
orta
ge o
f H
FH
Prog
ram
me
and
end-
of-li
fe
issu
es t
o hi
gher
soc
ial
grou
ping
s* in
the
Lei
nste
r
area
.
(*Ir
ish
Tim
es h
as a
hig
her
perc
enta
ge o
f AB
C1
read
ers
than
any
oth
er
Iris
h da
ily, w
ith 7
1%
of
its
read
ers
in L
eins
ter
and
57
% in
the
Gre
ater
Dub
lin
area
.)
Hos
pita
l-bas
ed s
taff
enga
ge w
ith lo
cal m
edia
.
Goo
d co
vera
ge in
one
dai
ly p
aper
par
ticul
arly
in
the
early
day
s of
the
pro
gram
me.
Dev
elop
ing
inte
rest
am
ong
othe
r m
edia
whi
ch
need
s to
be
furt
her
expl
oite
d.
Nee
d to
dev
elop
enh
ance
d
linka
ges
with
the
med
ia in
all
its
form
s.
Enga
gem
ent
wit
h po
litic
ians
Mee
tings
hel
d ac
ross
the
polit
ical
spe
ctru
m.
Con
tact
with
sen
ior
polit
icia
ns c
once
ntra
ted
in t
he e
arlie
r st
ages
of t
he P
rogr
amm
e’s
deve
lopm
ent.
Sco
pe for
mor
e co
ntac
t
with
sen
ior
polit
icia
ns
with
an
inte
rest
/
invo
lvem
ent
in t
he h
ealth
agen
da a
nd r
efor
m
proc
ess.
Nee
d to
dev
elop
enh
ance
d lin
ks w
ith p
oliti
cian
s w
ho
have
a h
ealth
brie
f, gi
ven
that
the
HS
E is
now
a d
eliv
ery
agen
t of
the
Dep
artm
ent
of H
ealth
.
Influ
enci
ng t
he H
ealt
h Sys
tem
: S
umm
ary
of a
chie
vem
ents
and
cha
lleng
es• En
gage
men
t an
d re
latio
nshi
ps w
ith t
he H
SE
have
gro
wn
and
deep
ened
ove
r th
e lif
etim
e of
the
HFH
Pro
gram
me.
The
est
ablis
hmen
t of
the
HS
E D
irect
orat
es w
ith
resp
onsi
bilit
y fo
r en
d-of
-life
car
e ha
s su
ppor
ted
this
pro
cess
.
• Th
e sh
ared
dev
elop
men
t of
a n
atio
nal P
allia
tive
Car
e C
ompe
tenc
e Fr
amew
ork
is a
key
way
of en
surin
g th
at e
nd-o
f-life
car
e be
com
es t
he b
usin
ess
of a
ll w
orki
ng in
the
heal
th s
ecto
r
• En
gage
men
t w
ith p
oliti
cian
s ha
s ta
ken
plac
e th
roug
hout
the
life
time
of t
he P
rogr
amm
e; t
here
is a
nee
d fo
r m
ore
inte
nse
enga
gem
ent
with
tho
se w
ho h
ave
a he
alth
rem
it, g
iven
tha
t th
e H
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E 2.6 Overall Achievements
In general:• Very significant funds won for a national initiative to improve end-of-life care in
hospitals.• A coalition of support established across state and philanthropic agencies, while also
involving a wide range of lay, professional and academic groups. • A programme team assembled under strong leadership supported by the Irish Hospice
Foundation.• Many examples occurred of ‘thinking outside the box’ of healthcare reform. • A host of workshops, conferences, expert meetings and consultations tackled end-of-
life issues in the hospital from a variety of perspectives.• Imaginative use made of the evidence base; original research commissioned; and
senior academics harnessed to the cause. • Extensive information/training materials, guidelines and symbolic resources developed
for use in hospitals. • The HFH Programme website provides a comprehensive and up to date portal to the
vast range of programme activities and outputs. Source: Clark & Graham (2013)
Audit and Standards• Activities in relation to the HFH Quality Standards and Audit of End-of-Life Care have
had a considerable and growing reach.• 32 acute hospitals are implementing the standards and 35 healthcare sites are
participating in piloting the new audit system designed to monitor the implementation of the standards.
• The 2008/9 National Audit involved a review of 1,000 deaths across 24 acute hospitals and 19 community hospitals and involved almost 6,500 informants.
Culture Change• 4,438 participants took part in staff development programmes, while 194 people were
trained to deliver these programmes.• 278 individuals received financial support to enable them achieve recognised
certification in essential palliative care.• 226 individuals participated in practice development initiatives.• An Ethical Framework for End-of-Life Care was made available to hospital staff for the
first time.• A variety of relevant and accessible end-of-life information materials and resources
were made available to hospital staff.
Capacity Development• End-of Life Care Development Plans in place in 11 large public acute hospitals.• End-of-life care objectives included in the annual service plans of a further 7 acute
hospitals which are in the process of developing End-of-Life Care Development Plans.• 18 acute hospitals and more than 35 community hospitals benefited from the support
of an End-of-Life Care Development Coordinator over an average two-year period.• HFH Community Hospitals Network established, with growing membership (currently
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01326) and good attendance at meetings.
• HFH Acute Hospitals Network established, with growing membership (currently 31) and good attendance at meetings.
• 11 projects shared €1.5m. in funding aimed at the physical improvement of end-of-life care facilities, ranging from extensive development work to more modest refurbishments.
• Symbolic end-of-life resources developed by the HFH Programme are now in use in more than 20 acute hospitals and various community hospitals around the country.
Influencing the Health System • Positive and sustained linkages have been developed with the relevant HSE
Directorates and with HIQA.• A number of partnership arrangements have been developed to progress particular
projects, including the new end-of-life audit system, and the further development of the role of the Acute Hospitals Network.
• Media coverage of the HFH Programme has been excellent in the Irish Times, but limited in other media.
• Engagement with politicians has been ongoing, with particularly strong engagement with senior politicians in the Programme’s earlier stages.
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E 3. Key Learning and Next Steps3.1 Key Learning Overview
The HFH Programme has successfully managed to raise the profile of end-of-life care in hospitals and other healthcare settings at both hospital and national level. Through its investment in people, systems and facilities, it has made a very positive contribution to the case for making end-of-life care central to the work of hospitals, other healthcare settings and health service providers.
The Programme has also generated a range of learning, both strategic and operational, across a number of areas. The HFH Evaluation Advisory Group worked with the author of this report to identify and prioritise this learning under five main headings, as follows:
• Sharing the vision• Governance • Engagement• Key drivers• Tools generated.
The purpose of this prioritisation is to provide direction for the Programme for the next phase of its operation.
3.2 Sharing the Vision
3.2.1 LearningLarge-scale philanthropic funding enabled the HFH Programme to engage in a very wide range of activities – such as the audits and the Design and Dignity review – that built an evidence base to support its vision. The sheer scale of the actions undertaken and the variety of language used within the Programme can at times, however, be seen to have diluted its overall vision and purpose. Interestingly, as implementation of the Programme progressed, certain areas were prioritised over others and HFH became more clearly focused on a smaller range of topics more clearly related to its vision.
The use of the word ‘hospice’ in the Programme name was a source of difficulty for both the specialist palliative care sector and more general hospital staff. Concerned to ensure that palliative care should be understood as applying throughout the trajectory of chronic and life-limiting illness, specialist palliative care professionals had issues with the emphasis on care for the dying (Clark & Graham, 2013). The more generalist view, in contrast, related to the fact that end-of-life care was largely considered to be the domain of a medical specialty that deals with expected rather than sudden death. More positively, however, the use of the term ‘hospice-friendly’ enabled the IHF to build a clear brand for the Programme, an important element in introducing a new concept.
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013Making end-of-life care the concern of all hospital staff required massive change at both
hospital and national level. It required firstly a sharing of the vision and securing the engagement of senior health service staff within hospitals and nationally.
Getting this ‘buy in’ was a challenge: at national level, because of ongoing changes in health service structures, along with limited awareness of end-of-life care needs. The formation in 2011 of the new HSE directorates of Clinical Strategy and Programmes and Quality and Patient Safety respectively has led to the development of a series of very useful joint initiatives and closer working relationships between the HFH Programme and the HSE, in particular. At hospital level the difficulty lay with a general overload of work coupled with diminishing resources, both financial and human, resulting in a general reluctance to take on any additional activities. There was also a particular challenge associated with winning the engagement of medical staff, who tended to consider end-of-life care as the exclusive domain of specialist palliative care and therefore not their responsibility. Notwithstanding all of these issues and challenges, the Programme managed to share its vision and secure the engagement of 32 public acute hospitals and over 35 other community hospitals/healthcare settings.
3.2.2 Next stepsThe HFH Programme needs to:
• Sustain the hard-won ‘buy in’ of the public acute hospitals in particular, in the face of strong and growing anecdotal evidence of growing levels of work overload. This is critical to the further development and future success of the Programme.
• Find ways to nurture and sustain the support of key locally-based hospital staff for the end-of-life care agenda, in order to encourage and sustain individual hospital participation.
• Support and inspire greater buy-in from medical staff.• Continue to work at national level to sustain the engagement of the HSE and HIQA. • Reinvigorate the Programme in order to ensure that end-of-life care (a) remains a
priority for hospitals participating in the Programme and (b) becomes a priority for those considering participation.
3.3 Governance
3.3.1 LearningThe HFH Programme was managed – particularly in the first few years of its operation – at some remove from the IHF executive and Board. Mediated through the National Steering Committee, the Programme’s reporting to the IHF Board tended to be more operational than strategic. Because of its budget and the scale of activities it supported, the HFH Programme ‘brand’ could in some ways be seen as competing with the IHF brand over this period. The development of the IHF’s 2012-2015 Strategic Plan9 saw the Foundation clearly state its commitment to the HFH Programme, and as part of that process, management structures were reviewed and the IHF Board took over full responsibility for the oversight and management of the Programme.
9 IHF (2012) Strategic Plan 2012-2015. IHF, Dublin.
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E 3.3.2 Next stepsThe IHF needs to continue to oversee the management of the HFH Programme, with Programme reporting aligned with the Foundation’s strategic plan and priorities.
3.4 Engagement
3.4.1 LearningAt national level, the health services have been been in a constant state of flux over the lifetime of the HFH Programme, with ongoing associated budgetary problems. For the Programme (and indeed the IHF), engaging with a constantly changing system has been a challenge, particularly as end-of-life care only became the responsibility of dedicated HSE directorates in 2011. The formation of these directorates has provided the Programme with a clear route into the HSE, which in turn has resulted in a closer working relationship.At hospital level, experience has shown that whatever the scale of the hospital, it has taken courage for individuals to advocate for their hospital to engage in the end-of-life care agenda and specifically in the HFH Programme. Many of these individuals have continued to act as advocates for the Programme as it has developed. They have been a powerhouse of support, and ways need to be found to continue to encourage them and others leading end-of-life care initiatives at hospital level.
Experience has also shown that active and sustained engagement with the end-of-life care agenda at hospital level requires dedicated resources. In the early stages of the HFH Programme, the End-of-Life Care Coordinators fulfilled this role. As the lifetime of these posts came to an end (in the majority of HFH hospitals), responsibility has passed back to the hospital to provide this support. The most effective way to do this would be for hospitals to commit protected staff hours to the Programme.
The busy reality of hospitals is that those who join the Programme cannot take on all its elements simultaneously. Individual hospitals therefore need to be supported to take more local ownership of the Programme as a process and to pursue the core elements that are relevant to them, with an option to implement non-core elements in time.
3.4.2 Next stepsAt national level, the HFH Programme needs to continue to engage with the dedicated HSE directorates. With no guarantee that these will be protected in the future, it also needs to continue to develop its engagement with HIQA and particularly with the Department of Health, in order to pursue national policy developments in relation to end-of-life care.
At hospital level, continued involvement in the HFH Programme requires hospitals to commit protected staff hours to support its implementation, while staff charged with this responsibility need to be supported to enable them to fulfil it.
Hospital participation in the various HFH networks is an important source of peer and overall Programme support. The HFH team also needs to be ‘visible’ at hospital level and supportive of key staff on the ground, which means more site visits. In addition, the Programme needs to find ways to highlight the work of exemplar hospitals and encourage the newly emerging
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participating in the Programme with its current level of resources.At the level of the Programme, there is a need to:
• Assist hospitals to make the business case and promote the value of the HFH Programme at a hospital level.
• Clarify the core elements required to implement the Programme at (a) hospital level and (b) within the new hospital groupings that will represent several hospitals.
3.5 Key Drivers
3.5.1 LearningAt national level, having large-scale philanthropic funding enabled the HFH Programme to engage with and access the ongoing input and support of senior health professionals and policy makers who could open doors. This in turn was supported by the belief and enthusiasm of the IHF’s Board and CEO, as well as the Programme team itself.
At hospital level, the Programme’s success in securing the buy-in of acute hospitals, particularly in the early stages, can be at least partly attributed to its ability to provide them with hospital-based support in the form of the End-of-Life Care Development Coordinators. The Development Coordinator posts were fully funded by the Programme, and their departure often left a significant gap. In hindsight, it may have been better had hospitals been asked to provide some level of co-funding for these posts, or to have engaged in a phased movement towards co-funding, in order to ensure their recognition that participation in the Programme would require dedicated and on-going resourcing in the longer term.
The success of the HFH Programme at hospital level can also be related to the commitment and enthusiasm of particular individuals who were interested in and supportive of the end-of-life care agenda and who believed that things could be changed for the better. The Programme’s ongoing support of these individuals, both formal (training opportunities, participation in the networks) and informal (phone support, casual meetings) was also important.
3.5.2 Next stepsThe future success of the HFH Programme will depend on its ability to consolidate and mainstream key end-of-life care drivers at both national and hospital level.
At national level, this will mean working with national health agencies/bodies to progress national end-of-life care policy and practice.
At hospital level, the key drivers include buy-in at senior management level and the provision of dedicated hospital-based personnel to pursue the end-of-life care agenda. With momentum lost in a number of hospital locations following the departure of the End-of-Life Care Development Coordinator, and in the absence of adequate provision by the hospital of protected time for existing staff to progress the agenda, it is imperative that ways be found to ensure no further loss of momentum.
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At the level of the Programme, there is a need to continue to progress and support the work at both national and hospital level.
3.6 Tools Generated
3.6.1 LearningThe breadth of the HFH Programme and the fact that it was run by an independent national charity (the IHF) facilitated significant use of creativity that might not have been possible otherwise. Particularly in the early stages, the Programme’s work involved considerable investigation, piloting and capacity building, which in turn generated a wide range of innovative tools to support enhanced levels of end-of-life care. Used consistently, some of these tools (e.g. the end-of-life spiral symbol, as used on a ward), have the capacity to contribute to a transformative experience for patient, family and hospital staff. There is, for example, anecdotal evidence10 that Design and Dignity initiatives facilitated by the Programme in association with HSE Estates have had a positive effect on staff morale. Interestingly, the most frequently used tools (including the Quality Standards) appear to be those that are embedded in practical action and activities.
3.6.2 Next stepsThe HFH Programme needs to continue to find ways to foster creativity, while also prioritising the provision of simple practical supports for end-of-life care.A wide variety of the tools and learning generated by the Programme have a resonance that is wider than end-of-life care. This needs to be constructively fed into the wider health system in order to maximise their impact.
It is a challenge to measure the outcomes of a project as diverse as the HFH Programme. Ways need to developed to do this, both directly, e.g. through the use of comparative attitudinal and/or behavioural studies, and indirectly, e.g. by observing reductions in the numbers of complaints and controversies.
10 On-going informal feedback from the staff in the Mater Hospital to HFH Programme Team members.
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The Irish Hospice FoundationMorrison Chambers32 Nassau StreetDublin 2Ireland
Telephone +353 (0) 1 6793188Fax +353 (0) 6790040 www.hospicefoundation.ie
Charity No. CHY6830