Systematic Review Paper
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Palliative Medicine 2015, Vol. 29(5) 399 –419 © The Author(s) 2015 Reprints and permissions: sagepub.co.uk/journalsPermissions.nav DOI: 10.1177/0269216314557882 pmj.sagepub.com
What is already known about the topic?
•• Previous reviews focused on patient preferences with regard to specific components of palliative care.
What this paper adds?
•• This review presents knowledge about patient’s combined preferences for the components constituting palliative care. •• Patients who are in the palliative phase of their illness have preferences for a person-centred approach to palliative care. •• Patients would like palliative care to help them achieve ‘Living a meaningful life’, but in order to focus on living, patients need
a responsive healthcare system, including the presence of ‘Responsive healthcare personnel’, ‘Responsive care environment’ and ‘Responsiveness in the organization of palliative care’.
Patients’ preferences in palliative care: A systematic mixed studies review
Tuva Sandsdalen1,2, Reidun Hov1, Sevald Høye1, Ingrid Rystedt2 and Bodil Wilde-Larsson1,2
Abstract Background: It is necessary to develop palliative care to meet existing and future needs of patients and their families. It is important to include knowledge of patient preferences when developing high-quality palliative care services. Previous reviews have focused on patient preferences with regard to specific components of palliative care. There is a need to review research on patient’s combined preferences for all elements that constitute palliative care. Aim: The aim of this study is to identify preferences for palliative care among patients in the palliative phase of their illness, by synthesizing existing research. Data sources: Studies were retrieved by searching databases – the Cochrane Library, Medline, CINAHL, PsycINFO, Scopus and Sociological Abstracts – from 1946 to 2014, and by hand searching references in the studies included. Design: A systematic mixed studies review was conducted. Two reviewers independently selected studies for inclusion and extracted data according to the eligibility criteria. Data were synthesized using integrative thematic analysis. Results: The 13 qualitative and 10 quantitative studies identified included participants with different illnesses in various settings. Four themes emerged representing patient preferences for care. The theme ‘Living a meaningful life’ illustrated what patients strived for. The opportunity to focus on living required the presence of ‘Responsive healthcare personnel’, a ‘Responsive care environment’ and ‘Responsiveness in the organization of palliative care’. Conclusion: The four themes may be useful for guiding clinical practice and measurements of quality, with the overall goal of meeting future needs and improving quality in palliative care services to suit patients’ preferences.
Keywords Patient preference, palliative care, quality of healthcare, review, systematic mixed studies review
1 Department of Nursing and Mental Health, Faculty of Public Health, Hedmark University College, Elverum, Norway
2 Discipline of Nursing Science, Department of Health Science, Faculty of Health, Science and Technology, Karlstad University, Karlstad, Sweden
557882PMJ0010.1177/0269216314557882Palliative MedicineSandsdalen et al. research-article2014
Review Article
Corresponding author: Tuva Sandsdalen, Department of Nursing and Mental Health, Faculty of Public Health, Hedmark University College, Pb 400, Elverum 2418, Norway. Email: [email protected]
400 Palliative Medicine 29(5)
Introduction
Patients facing death frequently have complex needs and may suffer physically, psychosocially and spiritually.1 In developed countries, people are living increasingly longer, often with cancer and other chronic diseases over long periods of time.2 Consequently, the number of patients needing palliative care will continue to increase. Concurrently, patients identify several areas for improve- ment of palliative care services in the context of malig- nant3–6 and other life-threatening illnesses,7–11 in diverse settings.3–6,10,12–14 With the increased demand for, and need to improve, palliative services, societies face an important challenge in developing palliative care to meet the needs of future patients and their families.1,15
Patient preferences are important in developing, improving and measuring quality of services.16–21 Historically, patients’ perspectives on palliative care have been collected from representatives, such as family and/or staff, but these are not necessarily in line with patients’ perspectives.22–24 Therefore, it is essential to ensure that patients’ voices guide future improvements of palliative care services. Patients’ perspectives of what is important in their care represent one aspect of quality.21 Donabedian20 maintained that patient preferences, expectations and wishes for care, and their experience and evaluation of their care, together characterize one definition of quality of care. Quality of care is thereby dependent on both patient preferences and their actual experience,19 so it must be measured from both angles. Knowledge of patient prefer- ences is important to ensure that methods and tools appro- priately characterize experiences. Previous reviews of patient preferences for palliative care have focused on spe- cific areas, including psychosocial support,25 the care environment,26,27 decision-making,28 place of care29 and specific settings.30,31 There is a need for synthesizing exist- ing research about patient preferences for the combined repertoire of palliative care.
There is no consensus on how patients who receive pal- liative care should be defined,32 which makes recognition of such patients difficult both clinically and in research. Previous research sometimes included patients not in a pal- liative phase or in receipt of palliative care.32 When dis- cussing end-of-life care,33 it is important to target patients who receive palliative care32 and who acknowledge the seriousness of their illness.33 It is therefore essential to have a review in which patients are in the palliative phase of their illness and have experienced palliative care services.
Patients in palliative care include patients with either can- cer or other life-threatening illnesses.1,34 Previous research on palliative care has, however, been criticized as being pri- marily focused on patients with cancer.2 Future research should target all populations with palliative care needs.
The European Association for Palliative Care (EAPC) delineates two levels of palliative care services: non-spe- cialized palliative care services, which occasionally serve patients in the palliative phases of their illnesses, and spe- cialized palliative care services, in which professionals with specialized training exclusively provide palliative care.1 To date, the latter have primarily served patients with cancer,2 so research in non-specialized settings is important for portraying preferences of patients with other life-threatening illnesses. To accurately describe prefer- ences, it is essential to include studies from a variety of settings and patient populations.
Patient preferences for palliative care can inform healthcare personnel, managers, decision-making authori- ties and researchers about the design and evaluation of high-quality palliative care.
The aim of this study is therefore to identify prefer- ences for palliative care among patients in the palliative phase of their illness, by synthesizing existing research.
Methods
A systematic mixed studies review35 with an integrated design36 was undertaken to integrate and synthesize find- ings from qualitative, quantitative and mixed methods studies.35,36 The design was chosen to gain broader knowl- edge as a result of including studies investigating patient preferences from different angles. Fundamental principles established by the Cochrane Collaboration37 and Preferred Reporting Items for Systematic Reviews and Meta- Analyses (PRISMA) guidelines38 also formed the basis of this review of patient preferences for palliative care.
Eligibility criteria
Criteria for selecting studies were determined before the literature search was conducted and reflected the aim of this review. Studies focusing on preferences for palliative care from patient perspectives were included. To reflect preferences for overall care, only studies in which patients express preferences for overall care were included.
Implications for practice, theory or policy
•• This review presents healthcare personnel, managers and decision-making authorities with knowledge of patient prefer- ences for palliative care.
•• Patient preferences for palliative care provide useful guidance for clinical practice and measurements of quality, with the overall goal of meeting future needs and improving quality in palliative care services to suit patients’ preferences.
Sandsdalen et al. 401
Type of studies. We included peer-reviewed research arti- cles using qualitative, quantitative or mixed methods, both primary research studies and systematic reviews, in Eng- lish, Norwegian, Swedish or Danish.
Type of participants/settings. Studies were included in which participants were aged ⩾18 years; with no cognitive impairments; diagnosed with an advanced, life-threaten- ing, progressive, incurable illness 1,32,34 and with experi- ence of palliative care services32 (specialized or non-specialized). Studies in which participants received specialized palliative care services were included because they were considered to be in a palliative phase regardless of whether the study reported on diagnoses. To ensure that patients’ views were accurately described, studies target- ing the perspective of both patients and families or staff were included only when patients’ views were presented separately. Similarly, studies targeting a mix of patients, in which only some were in the palliative phase, were included only when the views of patients in this phase appeared separately.
Type of outcome. Studies were included when the aim and the findings clearly focused on patient preferences for care. To capture how patients would like their care, we excluded studies evaluating only services. To ensure that patient preferences were consistently expressed in refer- ence to care services, studies that focused on life or illness in general were excluded.
Identification of relevant literature
Search method. The search method is described in Table 1. The literature was first retrieved by searching six elec- tronic databases covering a multidisciplinary healthcare area, with no limits on date of publication beyond the
coverage of the databases themselves. A search update was performed in June 2014. The searches were primarily conducted in Medline using both mesh terms (when avail- able) and free text words and then modified appropriately for other databases. A specialist librarian was consulted when developing the search strategy to ensure rigour in the search process. References were handled using the End- Note X4 software.
The literature was also retrieved using a snowballing technique to hand search the references in the studies selected from the electronic search.
Selection of literature. A modified flow chart (Figure 1) shows the identification and selection process as recom- mended by Moher et al.38 The electronic database searches identified 2945 records, with 93 records being identified through reference lists. This yielded a total of 2606 records after duplicates had been removed. Title and abstracts were then screened by means of a form that assessed rele- vance to ensure that inclusion and exclusion criteria and study aim were met. As a result, 2441 records were rejected, leaving 165 articles. These were assessed in full text; 140 did not meet the eligibility criteria and were rejected.
A total of 23 studies were ultimately included. Two additional publications from one study already included were included because they provided further information and findings relevant to the aim of this review. As recom- mended by Higgins and Green,37 in the summary of included studies, these publications are linked to the origi- nal study.
Appraisal and data extraction. The quality was assessed for each included study using the Critical Appraisal Skills Programme Tools (CASP) for qualitative and quantitative studies,39 modified by Nordström and Wilde-Larsson.40,41
Table 1. Search strategy.
Search Number of records identified including duplicates
Number of records identified excluding duplicates
Databases: the Cochrane Library (Cochrane Reviews and Other Reviews) to April 2012, Medline (1946 to May 2012), CINAHL (1982 to May 2012), PsycINFO (to May 2012), Scopus (1963 to May 2012), Sociological abstracts (1952 to May 2012). Including updated search (2012 to June 2014)
2945 2569
Search terms: (Patient or client or consumer) and (‘terminally ill’ or ‘palliative care’ or ‘terminal care’ or ‘hospice care’ or ‘end of life care’) and (‘quality of care’ or perspective or expectation or perception or preference or priority or experience or needs assessment or ‘patient satisfaction’ or ‘consumer satisfaction’)
Limitations: title and abstract, subject heading word and/or text word, adult, research article, peer reviewed, language: English, Norwegian, Swedish or Danish.
Reference lists 93 37 Total number of records 3038 2606
402 Palliative Medicine 29(5)
Using a simple scoring system, studies were rated to be of high, medium or low quality.40,41 No publications were scored as low quality. Papers included were scored as medium or high quality, as shown in Table 2.
Data were extracted using a data extraction form that was developed and pilot tested. Key data were extracted on study methods, participant characteristics, setting and findings.
All steps in the selection process and the appraisal and data extraction were performed by two independent researchers, as recommended by Higgins and Green.37 Any differences or uncertainties were discussed by the research team until agreement was reached.
Methods of synthesis
A systematic mixed studies review with an integrated design and a mixed methods (integrative) analysis36,42 was
conducted to analyse and synthesize data. This method allowed data to be grouped by findings addressing the same phenomenon,36 rather than by method.
The extracted findings were synthesized and analysed according to the analysis stages specified by Whittermore and Knafl.42 This descriptive thematic analysis consists of data reduction, data display, data comparison, conclusion and verification. Data were extracted according to a data extraction form (data reduction). These data were then used to summarize data collected about patients’ perspec- tives (data display) (Table 2).
Subsequently, findings were analysed (data compari- son), first by being coded and condensed according to pref- erences for aspects of palliative care, resulting in 378 expressed preferences, grouped according to patterns and themes. In addition, contrasts and comparisons between and within groups of preferences were evaluated, revealing commonalities and differences. Excel was used to ensure
Records iden�fied through database searching
(n = 2945, 376 duplicates) Sc re en
in g
In cl ud
ed El ig ib ili ty
Id en
� fic a�
on Addi�onal records iden�fied through reference lists (n = 93, 56 duplicates)
Records a�er duplicates removed (database search: n = 2569, reference lists: n =37)
Records screened (title/abstracts)
(n = 2606)
Records excluded (n = 2441)
Full-text ar�cles assessed for eligibility
(n =165)
Full-text ar�cles excluded, (n =140) Reasons:
Studies: - not peer-reviewed research ar�cles (n =23) - not in English, Danish, Swedish or Norwegian (n =1)
Pa�ents: - not pa�ent perspec�ve (n =46) - not in a pallia�ve phase (n =13) - with cogni�ve impairments (n =2)
Outcome: - not clearly focusing on preferences for overall care(n=55)
Ar�cles included in synthesis (n =25)
Studies included in synthesis n=23 (including two addi�onal
publica�ons of one included study)
Figure 1. Flow diagram of the selection process. Source: modified version of flow diagram as reported by Moher et al.38
Sandsdalen et al. 403
T a b
le 2
. Su
m m
ar y
o f in
cl ud
ed s
tu di
es (
pa ti en
t da
ta a
nd f in
di ng
s o nl
y) .
A ut
ho r
C o un
tr y
A im
Pa ti en
t ch
ar ac
te ri
st ic
s Se
tt in
g M
et ho
d Su
m m
ar y
o f re
le va
nt f in
di ng
s Q
ua lit
y as
se ss
m en
t
A ra
bl as
te r
et a
l.4 3
A us
tr al
ia T
o in
ve st
ig at
e w
ha t
nu rs
in g
be ha
vi o ur
s te
rm in
al ly
il l p
at ie
nt s
co ns
id er
m o st
h el
pf ul
40 t
er m
in al
ly il
l ad
ul ts
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ng a
t ho
m e,
a w
ar e
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th ei
r pr
o gn
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s
H o m
e vi
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rs in
g ag
en cy
Ex pl
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s tu
dy . W
it h
70 c
ar ds
ta
rg et
in g
sp ec
ifi c
ph ys
ic al
a nd
ps
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em o ti o na
l c ar
e o f se
lf an
d si
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ca nt
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er s,
p at
ie nt
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th
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g be
ha vi
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s. A
dd it io
na l s
ta te
m en
ts in
se
m i- st
ru ct
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rv ie
w
Pa rt
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ir ed
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si ng
b eh
av io
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th at
w er
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ur si
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ct iv
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at
pr o m
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m po
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t an
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to in
di vi
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ly f oc
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he re
as
nu rs
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ti es
f o cu
se d
o n
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a nd
p ar
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ily -fo
cu se
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re . A
ss is
ta nc
e to
r em
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as m
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hl y
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h
B en
N at
an
et a
l.4 4
Is ra
el T
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pa re
t he
im
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ed s,
as
a tt
ri bu
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by t
er m
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ly
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ld er
a du
lt p
at ie
nt s,
fa
m ily
m em
be rs
a nd
pr
o vi
de rs
( ph
ys ic
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a nd
nu
rs es
)
73 t
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ly il
l o ld
er a
du lt p
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nt s
Lo ng
-t er
m c
ar e
– ge
ri at
ri c
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re C
ro ss
-s ec
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re
(5 -p
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t Li
ke rt
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le (
st ro
ng ly
di
sa gr
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tr o ng
ly a
gr ee
) ta
rg et
ed 4
3 ne
ed s
so rt
ed in
to p
hy si
ca l,
em o ti o na
l, ps
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ne
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P ar
ti ci
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rd in
g to
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po rt
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ud ed
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ti ve
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o m
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), f ee
lin g
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es , p
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g re
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it io
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yi ng
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g lif
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ur e
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H ig
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C aw
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et
a l.4
5 U
K T
o e
xp lo
re p
at ie
nt a
nd
cl in
ic ia
n pe
rc ep
ti o ns
a nd
ex
pe ri
en ce
s o f ca
re w
he n
de liv
er ed
in c
o nt
ra st
in g
PM O
C s
et ti ng
s
14 p
at ie
nt s
w it h
ca nc
er a
tt en
di ng
pa
lli at
iv e
o ut
pa ti en
t cl
in ic
s A
ge : 3
8– 72
y ea
rs
Pa lli
at iv
e m
ed ic
in e
o ut
pa ti en
t cl
in ic
s (P
M O
C s)
in t
hr ee
cl
in ic
s et
ti ng
s:
ho sp
it al
, h o sp
ic e
an d
co m
m un
it y
ba se
d
Ex pl
o ra
ti ve
, q ua
lit at
iv e
st ud
y. S
em i-
st ru
ct ur
ed in
te rv
ie w
s w
it h
to pi
c gu
id e
ai m
in g
at in
ve st
ig at
in g
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’ ex
pe ri
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s an
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rs pe
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n at
te nd
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th e
sp ec
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pa ti en
t cl
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s et
ti ng
PM O
C r
ep re
se nt
ed m
o re
t ha
n sy
m pt
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c o nt
ro l.
A nd
m
en ta
l a sp
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o f ca
re w
er e
va lu
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ig he
r th
an p
hy si
ca l
o ne
s. P
at ie
nt s
fa vo
ur ed
a h
o lis
ti c
ap pr
o ac
h, in
te ra
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e di
al o gu
e, e
na bl
ed e
m po
w er
m en
t, c
o nt
in ui
ty o
f ca
re w
it h
pr o fe
ss io
na lly
e xp
er ie
nc ed
p hy
si ci
an , a
cc es
s to
s o m
eo ne
to
t al
k to
w ho
li st
en ed
a nd
w as
k no
w le
dg ea
bl e
ab o ut
EO
L ex
pe ri
en ce
s, d
is cu
ss in
g pr
o bl
em s,
s up
po rt
f o r
fa m
ily , e
m o ti o na
l a nd
p hy
si ca
l s up
po rt
, f ri
en dl
in es
s,
ef fe
ct iv
e m
an ag
em en
t o f pr
o bl
em s,
in te
ra ct
io n
w it h
o th
er p
at ie
nt s,
s up
po rt
o f a
pe ac
e o f m
in d
an d
se ns
e o f
lif e
w o rt
h liv
in g
H ig
h
D al
e an
d Jo
hn st
o n4
6 Sc
o tl an
d T
o e
xp lo
re t
he c
o nc
er ns
o f pa
ti en
ts w
it h
in o pe
ra bl
e lu
ng c
an ce
r
6 pa
ti en
ts w
it h
in o pe
ra bl
e lu
ng
ca nc
er A
ge : 6
7– 81
y ea
rs
Sp ec
ia lis
t pa
lli at
iv e
ca re
, n ur
si ng
s et
ti ng
in
r ur
al c
o m
m un
it y
D es
cr ip
ti ve
q ua
lit at
iv e
st ud
y. S
em i-
st ru
ct ur
ed e
xp lo
ra to
ry in
te rv
ie w
s w
er e
co nd
uc te
d. T
w o p
at ie
nt s
w er
e in
te rv
ie w
ed a
ga in
( fo
llo w
-u p)
w it hi
n 2–
3 w
ee ks
. A tt
ri ti o n
du e
to d
ea th
( 3)
an
d w
o rs
en ed
il ln
es s
(1 )
Pa ti en
ts d
yi ng
o f lu
ng c
an ce
r re
po rt
ed t
ha t
ha vi
ng t
ru st
in
p ro
fe ss
io na
ls c
o nc
er ne
d th
em t
he m
o st
. T ru
st in
pr
o fe
ss io
na ls
in co
rp o ra
te d
pr o fe
ss io
na l c
ar e
(a va
ila bl
e he
lp w
he n
ne ed
ed ), a
n ac
ce pt
in g
ca re
a tm
o sp
he re
, ab
ili ty
t o t
ru st
in fo
rm at
io n
pr o vi
de d,
k no
w in
g w
ho
(t ea
m o
f pr
o fe
ss io
na ls
) to
c o nt
ac t
fo r
su pp
o rt
. F ac
to rs
th
at e
na bl
ed p
at ie
nt t
ru st
in p
ro fe
ss io
na ls
in cl
ud ed
in
fo rm
at io
n gi
ve n
in a
n un
de rs
ta nd
ab le
m an
ne r,
f ee
lin g
ca re
d fo
r, f ee
lin g
lis te
ne d
to a
nd h
av in
g ex
pr es
se d
co nc
er ns
p ro
m pt
ly t
en de
d to
a nd
f o llo
w ed
u p
H ig
h
D e
V o ge
l- V
o o gt
et
a l.4
7
N et
he rl
an ds
T o s
tu dy
E O
L ca
re t
ha t
pa ti en
ts r
ec ei
ve d,
p at
ie nt
s ex
pr es
se d
ca re
n ee
ds a
nd
th ei
r ex
pe ri
en ce
s w
it h
EO L
ca re
87 p
at ie
nt s
w it h
in cu
ra bl
e ca
nc er
M ea
n ag
e: 6
5 ye
ar s
Pa ti en
ts r
ec ei
vi ng
o ut
pa ti en
t se
rv ic
es
in o
ne o
r m
o re
co
nt ex
ts
C o ho
rt s
tu dy
. Pa
rt ic
ip an
ts r
es po
nd ed
t o
qu es
ti o nn
ai re
s ap
pr o xi
m at
el y
6 m
o nt
hs b
ef o re
t he
ir d
ea th
. Q
ue st
io nn
ai re
t ar
ge te
d co
nt ac
ts w
it h
he al
th ca
re p
ro fe
ss io
na ls
, r ec
ei ve
d ca
nc er
t he
ra py
, s at
is fa
ct io
n w
it h
ca re
, ex
pe ri
en ce
d pr
o bl
em s
in E
O L
ca re
an
d pe
rc ei
ve d
ne ed
f o r
ad di
ti o na
l se
rv ic
es . I
n ad
di ti o n,
t hr
ee o
pe n-
en de
d qu
es ti o ns
t ar
ge te
d th
e qu
al it y
o f th
ei r
EO L
ca re
Pa ti en
ts w
er e
ge ne
ra lly
s at
is fie
d w
it h
th e
ca re
t he
ir
he al
th ca
re t
ea m
p ro
vi de
d. N
ev er
th el
es s,
a la
rg e
sh ar
e o f pa
ti en
ts id
en ti fie
d ex
is ti ng
p ro
bl em
s: d
iff ic
ul ti es
in
re sp
o nd
in g
qu ic
kl y
to a
cu te
p ro
bl em
s an
d co
o rd
in at
in g
th e
ca re
o f di
ffe re
nt p
ro fe
ss io
na ls
, a cc
es si
bi lit
y o f
EO L
ca re
, a nd
in a
dj us
ti ng
h o sp
it al
c ar
e to
t he
h o m
e si
tu at
io n.
A dd
it io
na l c
o nc
er ns
in cl
ud ed
: l ac
k o f
co m
m un
ic at
io n,
p hy
si ci
an s
be in
g in
se ns
it iv
e, s
id e
ef fe
ct s
an d
co m
pl ic
at io
ns o
f tr
ea tm
en ts
, d el
ay s
in d
ia gn
o st
ic
te st
in g,
c ar
e de
liv er
y an
d re
sp o ns
es t
o c
o m
pl ai
nt s.
C o m
m un
ic at
io n
co ul
d be
s tr
en gt
he ne
d by
im pr
o ve
d pr
o vi
si o n
o f in
fo rm
at io
n, e
m o ti o na
l s up
po rt
a nd
re
sp ec
tf ul
t re
at m
en t
o f pa
ti en
ts
M ed
iu m
(C on
tin ue
d)
404 Palliative Medicine 29(5)
A ut
ho r
C o un
tr y
A im
Pa ti en
t ch
ar ac
te ri
st ic
s Se
tt in
g M
et ho
d Su
m m
ar y
o f re
le va
nt f in
di ng
s Q
ua lit
y as
se ss
m en
t
D zu
l- C
hu rc
h
et a
l.4 8
U SA
T o d
es cr
ib e
ex pe
ri en
ce s
o f se
ri o us
il ln
es s
in cl
ud in
g co
nc er
ns , p
re fe
re nc
es a
nd
pe rs
pe ct
iv es
o n
im pr
o vi
ng
in pa
ti en
t EO
L ca
re in
un
de rs
er ve
d po
pu la
ti o ns
20 p
at ie
nt s
w it h
te rm
in al
il ln
es s
w it h
th e
fo llo
w in
g di
ag no
se s:
C an
ce r
(n =
1 1)
En d-
st ag
e liv
er
di se
as e
(n =
5 )
C O
PD (
n =
2 )
C o ng
es ti ve
H F
(n =
2 )
H IV
/A ID
S (n
= 2
) A
ge : 3
8– 78
y ea
rs
Si x
nu rs
in g
un it s
in u
ni ve
rs it y-
af fil
ia te
d pu
bl ic
ho
sp it al
a nd
c en
tr e
fo r
un de
rs er
ve d
pa ti en
ts
Q ua
lit at
iv e
st ud
y us
in g
se m
i- st
ru ct
ur ed
in te
rv ie
w s
co ns
is ti ng
o f o pe
n- en
de d
qu es
ti o ns
t ar
ge ti ng
pa
ti en
ts ’ l
ife a
nd u
nd er
st an
di ng
o f
th ei
r di
se as
e, t
he im
pa ct
o f th
e ill
ne ss
, pe
rs pe
ct iv
es o
n de
at h
an d
dy in
g an
d su
gg es
ti o ns
f o r
ho w
E O
L ca
re m
ay b
e im
pr o ve
d
T he
p re
se nc
e o f di
ffi cu
lt li
fe s
to ri
es s
ha pe
d pr
ef er
en ce
s fo
r an
d ex
pe ri
en ce
s o f ho
sp it al
c ar
e am
o ng
u nd
er se
rv ed
te
rm in
al ly
il l p
at ie
nt s.
L ac
k o f so
ci al
s up
po rt
f ro
m f am
ily
an d
fr ie
nd s
co nt
ri bu
te d
to a
n in
cr ea
se d
im po
rt an
ce o
f su
pp o rt
f ro
m a
nd r
el at
io ns
hi p
w it h
he al
th p
ro fe
ss io
na ls
. R
eg ar
dl es
s o f pa
st h
is to
ry , p
at ie
nt s
pr ef
er re
d ho
ne st
co
m m
un ic
at io
n, p
ar ti ci
pa ti o n
in m
ed ic
al d
ec is
io n-
m ak
in g
an d
de ci
si o ns
a bo
ut m
an ag
em en
t o f pa
in a
nd s
ym pt
o m
s.
Su gg
es ti o ns
f o r
im pr
o ve
d EO
L ca
re in
cl ud
ed im
pr o ve
d co
m m
un ic
at io
n, im
pr o ve
d re
la ti o ns
hi ps
w it h
st af
f ba
se d
o n
a hu
m an
is ti c
ap pr
o ac
h w
he re
p ro
fe ss
io na
ls t
re at
t he
pa
ti en
t ho
lis ti ca
lly , a
nd m
o re
r ea
di ly
a va
ila bl
e ch
ap la
in cy
se
rv ic
es , a
s w
el l a
s ho
m e-
ba se
d m
ed ic
al s
er vi
ce s
H ig
h
G ar
dn er
an
d K
ra m
er 49
U SA
T o e
xa m
in e
EO L
ch al
le ng
es , c
o nc
er ns
an
d ca
re p
re fe
re nc
es
am o ng
t er
m in
al ly
il l
el de
rl y
pa ti en
ts a
nd
th ei
r fa
m ily
c ar
eg iv
er s,
w
it h
a sp
ec ifi
c fo
cu s
o n
ar ea
s o f co
ng ru
en ce
a nd
in
co ng
ru en
ce
10 f ra
il el
de rl
y pe
o pl
e lik
el y
to d
ie w
it hi
n 6
m o nt
hs f ro
m
o ne
o f fo
llo w
in g
di ag
no se
s: C
an ce
r (n
= 2
) H
ea rt
d is
ea se
(n
= 5
) Lu
ng d
is ea
se (
n =
3 )
A cc
id en
t- re
la te
d in
ju ri
es (
n =
2 )
A ge
: 6 4–
10 1
ye ar
s
C o m
m un
it y-
ba se
d lo
ng -t
er m
c ar
e,
he al
th a
nd s
o ci
al
se rv
ic es
f o r
o ld
er
ad ul
ts
Em be
dd ed
c as
e st
ud y.
I n-
de pt
h in
te rv
ie w
s fo
cu si
ng o
n pr
ef er
en ce
s,
ch al
le ng
es a
nd c
o nc
er ns
, f o r
ex am
pl e,
re
ga rd
in g
m o st
im po
rt an
t as
pe ct
s o f ca
re r
ec ei
ve d,
a sp
ec ts
o f a
‘g o o d
de at
h’ , p
re fe
re nc
es f o r
lo ca
ti o n
o f
de at
h, d
es ir
e fo
r th
e pr
es en
ce o
f fa
m ily
m em
be rs
, i m
po rt
an ce
o f fa
m ily
co
m m
un ic
at io
ns a
nd a
bi lit
y to
s ay
go
o db
ye , w
he th
er f am
ily m
em be
rs
an d
el de
rl y
ha d
di sc
us se
d EO
L pr
ef er
en ce
s an
d co
m fo
rt w
it h
o r
di ffi
cu lt ie
s in
d is
cu ss
in g
th is
Pr ef
er en
ce s
fo r
hi gh
-q ua
lit y
EO L
ca re
in cl
ud ed
r ec
ei vi
ng
co m
pe te
nt , c
o ns
is te
nt a
nd r
es po
ns iv
e ca
re ; r
ec ei
vi ng
o pt
im al
p ai
n an
d sy
m pt
o m
c o nt
ro l;
be in
g tr
ea te
d w
it h
di gn
it y
an d
re sp
ec t; li
vi ng
w hi
le d
yi ng
( hi
gh lig
ht in
g th
e im
po rt
an ce
o f fo
cu si
ng o
n lif
e, a
nd d
o in
g th
e th
in gs
o ne
en
jo ys
) an
d ha
vi ng
c o nt
ro l o
ve r
an d
a ch
o ic
e ab
o ut
o ne
’s c
ar e.
P at
ie nt
s pr
ef er
re d
dy in
g at
h o m
e, d
yi ng
w
it ho
ut s
uf fe
ri ng
, a vo
id in
g hi
gh -t
ec h
lif e
su pp
o rt
a nd
be
in g
al er
te d
w he
n de
at h
ne ar
s in
o rd
er t
o p
re pa
re
H ig
h
G at
es
et a
l.5 0
U SA
1. T
o c
o m
pa re
t he
s el
f- id
en ti fie
d ne
ed s
o f ca
nc er
pa
ti en
ts f ro
m o
ne n
o n-
pr o fit
h o sp
ic e
an d
o ne
un
iv er
si ty
c an
ce r
ce nt
re .
2. T
o e
st ab
lis h
th e
re lia
bi lit
y o f ca
nc er
pa
ti en
ts ’ n
ee ds
s ur
ve y
fo r
ho sp
ic e
pa ti en
ts
69 p
at ie
nt s
w it h
ca nc
er o
f w
ho m
o nl
y th
o se
in
ho sp
ic e
(n =
3 1)
w
er e
te rm
in al
ly
ill (
th er
ef o re
re
po rt
ed h
er e)
A ge
: 4 6–
91 y
ea rs
H o sp
ic e
ho m
e ca
re
pr o gr
am m
e D
es cr
ip ti ve
s ur
ve y.
S el
f- re
po rt
qu
es ti o nn
ai re
c o nt
ai ni
ng 5
1 it em
s di
st ri
bu te
d ac
ro ss
f iv
e ca
te go
ri es
: co
pi ng
n ee
ds , h
el p
ne ed
s, in
fo rm
at io
n ne
ed s,
w o rk
n ee
ds a
nd c
an ce
r sh
o ck
ne
ed s.
T w
o L
ik er
t sc
al e
(1 –7
s co
re )
sc o re
s fo
llo w
in g
ea ch
it em
, r at
in g
th e
im po
rt an
ce o
f ea
ch it
em a
nd h
o w
w
el l i
t w
as b
ei ng
m et
. O nl
y 28
o f th
e su
rv ey
s w
er e
in cl
ud ed
in t
he a
na ly
si s
Pa rt
ic ip
an ts
r at
ed c
o pi
ng n
ee ds
a s
m o st
im po
rt an
t,
w hi
ch in
cl ud
ed s
up po
rt f ro
m f am
ily , f
ri en
ds a
nd
a pr
o fe
ss io
na l c
ar eg
iv er
. O th
er n
ee ds
in cl
ud ed
ha
vi ng
s o m
eo ne
w ho
li st
en s,
f re
qu en
t an
d ho
ne st
co
m m
un ic
at io
n, a
cc es
s to
c ar
eg iv
er w
ho is
p at
ie nt
, m
ai nt
ai ne
d di
gn it y,
a n
ad ap
te d
liv in
g si
tu at
io n
th at
m ee
ts
o ne
’s n
ee ds
, t o b
e un
de rs
to o d,
s up
po rt
in c
o pi
ng w
it h
fe el
in gs
o f lo
ss o
f co
nt ro
l a nd
s o m
et hi
ng u
se fu
l t o d
o
H ig
h
G o o dw
in
et a
l.5 1
U K
T o d
es cr
ib e
pa lli
at iv
e da
y- ca
re s
er vi
ce s
fr o m
t he
pa
ti en
ts ’ p
er sp
ec ti ve
s
10 2
pa ti en
ts w
it h
ca nc
er (
n =
9 8)
, H IV
o r
m o to
r ne
ur o n
di se
as e
(n =
4 )
at te
nd in
g pa
lli at
iv e
da y
ca re
A ge
: 3 5–
87 y
ea rs
Fi ve
p al
lia ti ve
d ay
- ca
re c
en tr
es T
hr ee
in te
rv ie
w s
o ve
r a
3- m
o nt
h pe
ri o d.
S em
i- st
ru ct
ur ed
q ue
st io
ns
as ki
ng p
at ie
nt s:
‘W ha
t is
d ay
c ar
e lik
e? ’,
‘W ha
t is
t he
m o st
im po
rt an
t th
in g
ab o ut
d ay
c ar
e? ’ a
nd ‘I
s th
er e
a do
w ns
id e
to a
tt en
di ng
d ay
c ar
e? ’ O
nl y
33 %
o f th
e pa
ti en
ts c
o m
pl et
ed a
ll th
re e
in te
rv ie
w s
T he
s o ci
al a
sp ec
t o f pa
lli at
iv e
da y
ca re
is h
ig hl
ig ht
ed a
s pa
rt ic
ul ar
ly im
po rt
an t
fo r
pa ti en
ts a
tt en
di ng
. M ee
ti ng
pe
o pl
e pr
o vi
de d
an o
pp o rt
un it y
to t
al k
to p
eo pl
e w
ho u
nd er
st an
d, t
o h
av e
re la
ti o ns
hi ps
w it h
st af
f an
d vo
lu nt
ee rs
a nd
t o t
al k
to o
th er
p at
ie nt
s. G
et ti ng
o ut
pr
o vi
de d
a ch
an ge
o f en
vi ro
nm en
t, a
b re
ak o
f th
e us
ua l r
o ut
in e
an d
an o
pp o rt
un it y
to b
e in
a r
el ax
ed
an d
fr ie
nd ly
e nv
ir o nm
en t. P
at ie
nt s
en jo
ye d
a va
ri et
y o f ac
ti vi
ti es
, a lt ho
ug h
so m
e w
er e
no t
in te
re st
ed in
at
te nd
in g
al l a
ct iv
it ie
s. S
up po
rt , f
o o d
an d
a br
ea k
fo r
th e
fa m
ily w
er e
al so
im po
rt an
t as
pe ct
s o f da
y- ca
re s
er vi
ce s
M ed
iu m
T a b
le 2
. (C
o nt
in ue
d)
Sandsdalen et al. 405
A ut
ho r
C o un
tr y
A im
Pa ti en
t ch
ar ac
te ri
st ic
s Se
tt in
g M
et ho
d Su
m m
ar y
o f re
le va
nt f in
di ng
s Q
ua lit
y as
se ss
m en
t
G ro
be
et a
l.5 2
U SA
T o e
xp lo
re w
ha t
se rv
ic es
te
rm in
al ly
il l c
an ce
r pa
ti en
ts p
er ce
iv e
th at
th
ey n
ee d
du ri
ng t
he
pr et
er m
in al
il ln
es s
pe ri
o d
30 t
er m
in al
pa
ti en
ts w
it h
ad va
nc ed
c an
ce r
re ce
iv in
g pa
lli at
iv e
ca re
A ge
: 2 7–
91 y
ea rs
Pa ti en
ts r
ec ru
it ed
fr
o m
v ar
io us
he
al th
ca re
pr
o fe
ss io
na ls
St ru
ct ur
ed in
te rv
ie w
s ch
ed ul
e as
se ss
in g
pa rt
ic ip
an ts
’ p er
ce iv
ed
ne ed
s an
d pr
ef er
en ce
s, a
w ar
en es
s o f
re so
ur ce
s an
d fa
ct o rs
t ha
t in
hi bi
t us
e o f kn
o w
n se
rv ic
es a
cr o ss
1 7
ar ea
s:
m ed
ic al
m o ni
to ri
ng a
t ho
m e,
m ed
ic al
eq
ui pm
en t
at h
o m
e, t
ra ns
po rt
at io
n,
pe rs
o na
l c ar
e, h
o us
eh o ld
u pk
ee p,
m
ea l p
re pa
ra ti o n,
f in
an ci
al a
ss is
ta nc
e an
d co
un se
lli ng
, r es
pi te
c ar
e, le
ga l
as si
st an
ce , e
m o ti o na
l s up
po rt
( pa
ti en
t an
d fa
m ily
), r
ec re
at io
na l d
iv er
si o n
(p at
ie nt
a nd
f am
ily ), c
o m
pa ni
o ns
hi p,
ch
ild c
ar e,
b er
ea ve
m en
t su
pp o rt
fo
r fa
m ily
, m an
ag em
en t
o f ph
ys ic
al
sy m
pt o m
s, lo
ca ti o n
o f te
rm in
al c
ar e
an d
sp ec
ia l t
er m
in al
c ar
e te
am
Pa rt
ic ip
an ts
’ p er
ce iv
ed n
ee ds
o f se
rv ic
es r
el at
ed t
o
tr an
sp o rt
at io
n, e
qu ip
m en
t, m
ea ls
, h o us
ek ee
pi ng
, in
-h o m
e m
ed ic
al m
o ni
to ri
ng , p
er so
na l c
ar e,
f am
ily
re sp
it e,
f in
an ci
al a
ss is
ta nc
e, le
ga l a
ss is
ta nc
e, p
at ie
nt s
an d
fa m
ily r
ec re
at io
n, c
o m
pa ni
o ns
hi p,
c hi
ld c
ar e,
e m
o ti o na
l su
pp o rt
( fo
r pa
ti en
ts a
nd f am
ily )
an d
im pr
o ve
d sy
m pt
o m
m
an ag
em en
t. A
lm o st
t w
o -t
hi rd
s o f th
e pa
ti en
ts
pr ef
er re
d be
in g
ca re
d fo
r at
h o m
e, a
nd a
pp ro
xi m
at el
y,
a th
ir d
pr ef
er re
d an
in st
it ut
io n.
M o st
p at
ie nt
s pr
ef er
re d
to h
av e
th ei
r ca
re d
ir ec
te d
by a
c ho
se n
ca nc
er
tr ea
tm en
t pr
o vi
de r
ra th
er t
ha n
by a
s pe
ci al
c ar
e te
am
(b ec
au se
t he
s pe
ci al
c ar
e te
am w
as a
ss o ci
at ed
w it h
a fe
el in
g o f no
t kn
o w
in g
w ho
w as
in de
ed r
es po
ns ib
le )
M ed
iu m
H an
ra tt
y
et a
l.5 3
U K
T o c
o m
pa re
t he
ex
pe ri
en ce
s an
d fu
tu re
pr
ef er
en ce
s fo
r ca
re a
t th
e EO
L be
tw ee
n th
o se
w
ho li
ve a
lo ne
a nd
t ho
se
w ho
li ve
w it h
o th
er s.
32 o
ld er
p at
ie nt
s w
it h
ca nc
er ,
ju dg
ed t
o b
e in
t he
la
st y
ea r
o f th
ei r
liv es
. 2 0
o f th
e pa
rt ic
ip an
ts w
er e
liv in
g al
o ne
. A
ge : 7
0– 95
y ea
rs
H o m
e ca
re o
r da
y ho
sp ic
e Q
ua lit
at iv
e st
ud y
Se m
i- st
ru ct
ur ed
in te
rv ie
w s
ba se
d o n
si x
to pi
cs : i
lln es
s ex
pe ri
en ce
, c ur
re nt
ci
rc um
st an
ce s
an d
so ci
al s
up po
rt ,
qu al
it y
o f lif
e, u
se o
f he
al th
a nd
s o ci
al
se rv
ic es
, E O
L pr
ef er
en ce
s an
d fu
tu re
ca
re
Pa ti en
ts p
re fe
rr ed
r el
at io
na l c
o nt
in ui
ty w
it h
he al
th ca
re
pr o fe
ss io
na ls
in vo
lv in
g pe
rs o na
l r el
at io
ns hi
p an
d ef
fic ie
nt
co ns
ul ta
ti o ns
. E m
o ti o na
l s up
po rt
a nd
p ro
fe ss
io na
ls
w ho
t o o k
ti m
e to
s pe
ak w
it h
th em
a s
pe o pl
e w
er e
im po
rt an
t. A
cc es
s, a
va ila
bi lit
y an
d co
m pe
te nc
e fr
o m
pr
o fe
ss io
na ls
w er
e pe
rc ei
ve d
as r
ea ss
ur in
g. A
ll pa
rt ic
ip an
ts p
re fe
rr ed
t o r
em ai
n in
t he
ir h
o m
es a
s lo
ng a
s po
ss ib
le a
nd h
av e
th e
o pt
io n
to d
ie a
t ho
m e.
M
o vi
ng in
to a
c ar
e ho
m e
w as
a s
o ur
ce o
f an
xi et
y ba
se d
o n
co st
s an
d pe
rc ep
ti o ns
t ha
t th
er e
m ay
b e
no t
ni ce
p la
ce s
to s
pe nd
o ne
’s f in
al d
ay s.
P eo
pl e
fr o m
d ay
ho
sp ic
e ex
pr es
se d
th e
pr ef
er en
ce t
o d
ie in
a h
o sp
ic e.
N
o ne
o f th
e pa
ti en
ts h
ad d
is cu
ss ed
p la
ns f o r
fu tu
re
ca re
w it h
pr o fe
ss io
na ls
, a nd
p at
ie nt
s co
ns id
er ed
m ak
in g
su ch
p la
ns o
nl y
w he
n de
at h
w as
im m
in en
t. W
it h
re ga
rd t
o a
dv an
ce d
ca re
p la
nn in
g, p
at ie
nt p
ri o ri
ti es
w
er e
to r
ed uc
e th
e bu
rd en
o n
th e
fa m
ily a
nd c
o m
fo rt
an
d ab
se nc
e o f pa
in . T
he se
c ar
e as
pe ct
s ha
d br
o ad
er
co ns
eq ue
nc es
f o r
pa ti en
ts li
vi ng
a lo
ne . T
he p
er so
na l
as pe
ct o
f ca
re in
vo lv
in g
re la
ti o na
l c o nt
in ui
ty , n
o t
to
bu rd
en f am
ili es
a nd
c o nc
er ns
o ve
r pl
ac e
o f ca
re , w
as
pa rt
ic ul
ar ly
im po
rt an
t fo
r pa
ti en
ts li
vi ng
a lo
ne .
M ed
iu m
(C on
tin ue
d)
T a b
le 2
. (C
o nt
in ue
d)
406 Palliative Medicine 29(5)
A ut
ho r
C o un
tr y
A im
Pa ti en
t ch
ar ac
te ri
st ic
s Se
tt in
g M
et ho
d Su
m m
ar y
o f re
le va
nt f in
di ng
s Q
ua lit
y as
se ss
m en
t
H ey
la nd
et
a l.5
4 C
an ad
a T
o id
en ti fy
a sp
ec ts
o f
EO L
ca re
t ha
t ar
e hi
gh ly
pr
io ri
ti ze
d as
t ar
ge ts
f o r
im pr
o ve
m en
t, d
ra w
in g
o n
fe ed
ba ck
e lic
it ed
f ro
m
pa ti en
ts a
nd t
he ir
f am
ili es
36 1
pa ti en
ts w
it h
th e
fo llo
w in
g ad
va nc
ed li
fe
lim it in
g ill
ne ss
es :
C an
ce r
(n =
8 1)
C O
PD (
n =
1 28
) H
F (n
= 5
0) C
ir rh
o si
s (n
= 5
) A
ge ⩾
80 y
ea rs
(n
= 9
7) A
ge : ⩾
55 y
ea rs
(m
ea n
ag e
77 y
ea rs
)
H o m
e o r
re ti re
m en
t ho
m e
H o sp
it al
Pa lli
at iv
e ca
re u
ni t
M ul
ti -c
en tr
e cr
o ss
-s ec
ti o na
l s ur
ve y.
Q
ue st
io nn
ai re
p ro
m pt
ed p
at ie
nt s
to
ra te
t he
ir o
ve ra
ll sa
ti sf
ac ti o n
w it h
ca re
an
d th
ei r
sp ec
ifi c
sa ti sf
ac ti o n
w it h
37
el em
en ts
o f EO
L ca
re a
cc o rd
in g
to
a 5-
po in
t Li
ke rt
s ca
le (
1 =
n o t
at a
ll im
po rt
an t
to 5
= e
xt re
m el
y im
po rt
an t)
Im po
rt an
t as
pe ct
s o f EO
L ca
re in
cl ud
ed p
la nn
in g
o f
ca re
( he
al th
ca re
p ro
fe ss
io na
ls w
o rk
in g
to ge
th er
a s
a te
am ), a
g o o d
re la
ti o ns
hi p
w it h
do ct
o rs
a nd
n ur
se s
(c o m
pa ss
io na
te , s
up po
rt iv
e, t
ru st
in g,
in a
m an
ne r
th at
p re
se rv
ed d
ig ni
ty )
an d
go o d
co m
m un
ic at
io n
an d
de ci
si o n-
m ak
in g
pr o ce
ss w
it h
do ct
o r
an d
nu rs
es
(c o ns
is te
nc y
o f in
fo rm
at io
n, f ul
fil m
en t
o f w
is he
s fo
r ca
re a
nd t
re at
m en
t) , a
sp ec
ts o
f m
ed ic
al c
ar e
(t es
ts
an d
tr ea
tm en
t gi
ve n)
, e m
o ti o na
l s up
po rt
a nd
s ym
pt o m
co
nt ro
l. T
he c
ar e
en vi
ro nm
en t
w as
a ls
o im
po rt
an t.
A re
as n
ee di
ng im
pr o ve
m en
t re
la te
d to
s pi
ri tu
al a
nd
em o ti o na
l s up
po rt
, t he
p ro
m o ti o n
o f fe
el in
gs o
f pe
ac e,
as
se ss
m en
t an
d tr
ea tm
en t
o f em
o ti o na
l p ro
bl em
s,
av ai
la bi
lit y
o f ph
ys ic
ia ns
, a p
er so
na l i
nt er
es t
in p
at ie
nt s
o n
be ha
lf o f ph
ys ic
ia ns
, c o m
m un
ic at
io n
th at
is c
le ar
a nd
co
ns is
te nt
a nd
p at
ie nt
s be
in g
lis te
ne d
to
H ig
h
H ey
la nd
et
a l.5
5 C
an ad
a T
o d
es cr
ib e
ke y
el em
en ts
o f qu
al it y
EO L
ca re
fr
o m
t he
p er
sp ec
ti ve
s o f
te rm
in al
ly il
l p at
ie nt
s an
d th
ei r
fa m
ili es
43 4
te rm
in al
ly
ill p
at ie
nt s
w it h
ad va
nc ed
C an
ce r
(n =
1 66
) C
O PD
( n
= 1
18 )
H F
(n =
1 06
) C
ir rh
o si
s (n
= 5
0) A
ge : ⩾
55 y
ea rs
(m
ea n
ag e
71 y
ea rs
)
Fi ve
t er
ti ar
y te
ac hi
ng h
o sp
it al
s C
ro ss
-s ec
ti o na
l s ur
ve y
by m
ea ns
o f
a qu
es ti o nn
ai re
p ro
m pt
in g
pa ti en
ts
to r
an k
28 e
le m
en ts
o f EO
L ca
re
ac co
rd in
g to
p er
so na
l i m
po rt
an ce
, us
in g
a 5-
po in
t Li
ke rt
s ca
le (
1 =
n o t
at a
ll im
po rt
an t
to 5
= e
xt re
m el
y im
po rt
an t)
El em
en ts
o f ca
re t
ha t
w er
e im
po rt
an t
fo r
al l p
at ie
nt s
w er
e tr
us t
in t
he t
re at
in g
ph ys
ic ia
ns a
nd n
ur se
s,
av o id
an ce
o f un
w an
te d
lif e
su pp
o rt
, e ffe
ct iv
e an
d ho
ne st
co
m m
un ic
at io
n, f o cu
s o n
ex is
te nt
ia l c
o nc
er ns
, f o r
ex am
pl e,
li fe
c o m
pl et
io n,
f o cu
s o n
so ci
al c
o nc
er ns
s uc
h as
n o t
be in
g a
bu rd
en t
o f am
ily , c
o nt
in ui
ty o
f ca
re , a
ct iv
e in
vo lv
em en
t in
d ec
is io
n- m
ak in
g ab
o ut
c ar
e, e
ffe ct
iv e
sy m
pt o m
c o nt
ro l a
nd b
ei ng
t re
at ed
in a
r es
pe ct
fu l,
co m
pa ss
io na
te a
nd in
di vi
du al
m an
ne r
th at
p re
se rv
es
di gn
it y.
A lt ho
ug h
al l e
le m
en ts
w er
e co
ns id
er ed
ex
tr em
el y
im po
rt an
t fo
r al
l p ar
ti ci
pa nt
s, p
at ie
nt s
w it h
ca nc
er a
nd o
th er
a dv
an ce
d di
se as
es , r
es pe
ct iv
el y,
r at
ed
ca re
e le
m en
ts s
lig ht
ly d
iff er
en tl y
ac co
rd in
g to
r an
ki ng
o f
el em
en ts
t ha
t w
er e
ex tr
em el
y im
po rt
an t
H ig
h
In cl
ud in
g a)
R
o ck
er
et a
l.5 6
C an
ad a
T o d
es cr
ib e
im po
rt an
ce
an d
sa ti sf
ac ti o n
w it h
el em
en ts
o f EO
L ca
re ,
fo r
pa ti en
ts w
ho h
av e
ad va
nc ed
C O
PD
28 4
pa ti en
ts w
it h
ad va
nc ed
C O
PD
(n =
1 18
) an
d ca
nc er
( n
= 1
66 )
A ge
: ⩾ 55
y ea
rs
Fi ve
t er
ti ar
y te
ac hi
ng h
o sp
it al
s Q
ue st
io nn
ai re
in w
hi ch
p at
ie nt
s ra
te t
he ir
s at
is fa
ct io
n an
d pe
rs o na
lly
pe rc
ei ve
d im
po rt
an ce
o f 28
e le
m en
ts
o f EO
L ca
re a
cc o rd
in g
to a
5 -p
o in
t Li
ke rt
s ca
le . P
at ie
nt s
al so
r at
e th
ei r
pr ef
er en
ce s
fo r
de ci
si o n-
m ak
in g
an d
le ve
ls o
f ca
re , a
s w
el l a
s th
ei r
ne ed
f o r
in fo
rm at
io n
Pa ti en
ts w
ho h
ad C
O PD
p er
ce iv
ed t
ha t
th e
m o st
im
po rt
an t
el em
en t
o f ca
re in
cl ud
ed n
o t
to b
e ke
pt
al iv
e o n
lif e
su pp
o rt
w he
n th
er e
is li
tt le
h o pe
f o r
a m
ea ni
ng fu
l r ec
o ve
ry , t
o h
av e
re lie
f o f sy
m pt
o m
s an
d an
a de
qu at
e es
ta bl
is he
d pl
an o
f ca
re b
ey o nd
h o sp
it al
di
sc ha
rg e.
T he
se e
le m
en ts
w er
e no
t cu
rr en
tl y
be in
g m
et
fo r
C O
PD p
at ie
nt s.
W he
n co
m pa
ri ng
t he
r es
po ns
es
o f pa
ti en
ts w
it h
C O
PD a
nd c
an ce
r, r
es pe
ct iv
el y,
di
ffe re
nc es
in p
at ie
nt p
re fe
re nc
es f o r
ca re
w er
e o bs
er ve
d ac
co rd
in g
to r
an ki
ng o
f el
em en
ts t
ha t
w er
e ex
tr em
el y
im po
rt an
t. I n
ad di
ti o n,
p at
ie nt
s w
it h
C O
PD ,
co m
pa re
d w
it h
pa ti en
ts w
it h
ca nc
er , w
er e
le ss
s at
is fie
d w
it h
th ei
r ca
re , l
es s
in te
re st
ed in
in fo
rm at
io n
ab o ut
th
ei r
pr o gn
o si
s, C
PR a
nd /o
r m
ec ha
ni ca
l v en
ti la
ti o n
an d
fa vo
ur ed
c ar
e th
at w
as m
o re
f o cu
se d
o n
lif e
pr o lo
ng at
io n
H ig
h
T a b
le 2
. (C
o nt
in ue
d)
Sandsdalen et al. 407
A ut
ho r
C o un
tr y
A im
Pa ti en
t ch
ar ac
te ri
st ic
s Se
tt in
g M
et ho
d Su
m m
ar y
o f re
le va
nt f in
di ng
s Q
ua lit
y as
se ss
m en
t
In cl
ud in
g b)
St
ra ch
an
et a
l.5 7
C an
ad a
T o id
en ti fy
m aj
o r
o pp
o rt
un it ie
s fo
r im
pr o vi
ng E
O L
ca re
, fr
o m
t he
p er
sp ec
ti ve
s o f
pa ti en
ts w
it h
ad va
nc ed
H F
10 6
pa ti en
ts w
it h
ad va
nc ed
H F
M ea
n ag
e:
75 .8
y ea
rs
Fi ve
t er
ti ar
y te
ac hi
ng h
o sp
it al
s C
ro ss
-s ec
ti o na
l s ur
ve y.
Q ue
st io
nn ai
re
pr o m
pt ed
p at
ie nt
s to
r at
e th
ei r
sa ti sf
ac ti o n
an d
pe rs
o na
lly p
er ce
iv ed
im
po rt
an ce
o f 28
e le
m en
ts o
f EO
L ca
re a
cc o rd
in g
to a
5 -p
o in
t Li
ke rt
sc
al e.
I n
ad di
ti o n,
p at
ie nt
r at
ed
th ei
r pr
ef er
en ce
s fo
r pr
o gn
o st
ic
in fo
rm at
io n,
le ve
ls o
f ca
re , p
la ce
o f de
at h,
p re
fe re
nc es
f o r
ro le
s in
de
ci si
o n-
m ak
in g
an d
ne ed
s re
la te
d to
in
fo rm
at io
n
A m
o ng
p at
ie nt
s w
it h
H F,
t he
e le
m en
ts o
f ca
re v
ie w
ed
as m
o st
im po
rt an
t in
cl ud
ed a
vo id
an ce
o f lif
e su
pp o rt
if
th er
e w
as n
o h
o pe
f o r
a m
ea ni
ng fu
l r ec
o ve
ry , e
ffe ct
iv e
an d
ho ne
st c
o m
m un
ic at
io n
w it h
th e
do ct
o rs
( ad
eq ua
te
in fo
rm at
io n,
a va
ila bi
lit y,
p re
se rv
at io
n o f di
gn it y)
, n o t
be in
g a
bu rd
en o
n fa
m ily
, g o o d
re la
ti o ns
hi p
w it h
do ct
o rs
( tr
us t
an d
co nf
id en
ce , a
w ar
en es
s o f w
ho is
th
e m
ai n
do ct
o r
in c
ha rg
e) , a
de qu
at e
pl an
ni ng
o f ca
re
(i nf
o rm
at io
n ab
o ut
y o ur
m ed
ic al
h is
to ry
a va
ila bl
e to
do
ct o rs
o n
ad m
is si
o n)
, o pt
im al
s ym
pt o m
c o nt
ro l,
re co
gn it io
n o f ex
is te
nt ia
l n ee
ds (
to c
o m
pl et
e lif
e) a
nd
em o ti o na
l s up
po rt
. P at
ie nt
s pr
ef er
re d
le ss
a gg
re ss
iv e
ca re
t ha
n th
ey p
er ce
iv ed
t he
y w
er e
cu rr
en tl y
re ce
iv in
g an
d th
ey w
an te
d so
m e
de gr
ee o
f sh
ar ed
d ec
is io
n- m
ak in
g. M
aj o r
o pp
o rt
un it ie
s fo
r pr
o vi
di ng
s up
po rt
t o
fa m
ily c
ar eg
iv er
s in
cl ud
ed a
n ad
eq ua
te d
is ch
ar ge
p la
n,
ef fe
ct iv
e sy
m pt
o m
r el
ie f fo
r pa
ti en
t an
d cl
ea r
an d
ho ne
st
co m
m un
ic at
io n
w it h
th e
ph ys
ic ia
ns in
c ha
rg e
H ig
h
H o pk
in so
n an
d H
al le
tt 58
U K
T o e
xp lo
re p
er ce
pt io
ns
o f w
ha t
is m
o st
im po
rt an
t in
d ay
-c ar
e ex
pe ri
en ce
s am
o ng
p at
ie nt
s at
te nd
in g
a da
y- ca
re u
ni t
12 p
at ie
nt s
w it h
te rm
in al
c an
ce r
di ag
no se
s A
ge : 5
0– 86
y ea
rs
D ay
-c ar
e ho
sp ic
e un
it Ph
en o m
en o lo
gi ca
l s tu
dy . O
pe n
an d
ac ce
pt in
g in
te rv
ie w
s ty
le t
ha t
fo cu
se d
o n
pa ti en
ts ’ o
pi ni
o ns
/e xp
er ie
nc es
o f
at te
nd in
g da
y ca
re
Pa rt
ic ip
an ts
’ p er
ce pt
io ns
o f im
po rt
an t
as pe
ct s
o f da
y ca
re in
cl ud
ed f ee
lin g
co m
fo rt
ab le
( w
el co
m e,
a cc
ep te
d,
un de
rs to
o d,
t im
e to
t al
k, r
ec ei
vi ng
g en
ui ne
c o nc
er n
an d
in te
re st
), f ee
lin g
go o d
ab o ut
o ne
se lf/
fe el
in g
va lu
ed
(e nh
an ci
ng s
el f-
w o rt
h by
m ak
in g
ch o ic
es , e
sc ap
in g
si ck
ro
le )
an d
fe el
in g
le ss
is o la
te d
(s ur
ro un
de d
by s
ta ff
an d
o th
er p
at ie
nt s
w ho
u nd
er st
an d)
. A h
um an
is ti c
an d
in di
vi du
al r
es po
ns e
to p
at ie
nt s’
c o nc
er ns
w as
im po
rt an
t.
C o nt
ra st
s in
t he
p er
ce pt
io ns
o f im
po rt
an t
fa ct
o rs
de
sc ri
be d
w er
e re
la te
d to
t he
m an
ne r
in w
hi ch
t he
pa
rt ic
ip an
ts m
an ag
ed t
he ir
li fe
w it h
ca nc
er
M ed
iu m
Ja ns
se n
an d
M ac
Le o d5
9 N
ew
Z ea
la nd
T o u
nd er
st an
d th
e na
tu re
o f m
ed ic
al c
ar e
fr o m
t he
pe
rs pe
ct iv
e o f pe
o pl
e ap
pr o ac
hi ng
t he
E O
L
13 p
at ie
nt s
dy in
g o f ca
nc er
, r ec
ei vi
ng
ho sp
ic e
ca re
D o ct
o r
se rv
ic es
(n
o t
sp ec
ia lis
ts
in p
al lia
ti ve
c ar
e)
fo r
pa ti en
ts li
vi ng
at
h o m
e. P
at ie
nt
re cr
ui te
d th
ro ug
h a
co m
m un
it y
ho sp
ic e
ca re
p ro
gr am
m e
Se m
i- st
ru ct
ur ed
in te
rv ie
w s
w it h
an in
te rp
re ti ve
p he
no m
en o lo
gi ca
l pe
rs pe
ct iv
e fo
cu si
ng o
n pa
rt ic
ip an
ts ’
ex pe
ri en
ce s
an d
pe rs
pe ct
iv e
o f
th ei
r in
te ra
ct io
ns w
it h
ph ys
ic ia
ns .
Q ue
st io
ns in
cl ud
ed d
id y
o u
th in
k yo
ur d
o ct
o r
ca re
d? W
ha t
o f th
e do
ct o r’
s be
ha vi
o ur
s an
d la
ng ua
ge
de m
o ns
tr at
ed t
hi s?
Pa rt
ic ip
an ts
v al
ue d
do ct
o rs
c o nn
ec ti ng
w it h
bo th
p at
ie nt
an
d ca
re r.
C en
tr al
t o t
hi s
th em
e w
as t
he d
o ct
o r’
s co
m m
un ic
at io
n st
yl e,
s uc
h as
m an
ne rs
, c ar
in g
to uc
h,
ge tt
in g
to k
no w
t he
p at
ie nt
a nd
c ar
er b
y lis
te ni
ng ,
sp en
di ng
t im
e w
it h
th em
a nd
c o ns
id er
in g
th ei
r po
in ts
o f vi
ew a
nd in
cl us
io n
o f bo
th p
at ie
nt s
an d
th ei
r ca
re r
in t
he h
ea lt hc
ar e
te am
. P ar
ti ci
pa nt
s ap
pr ec
ia te
d be
in g
sp o ke
n to
in a
r es
pe ct
fu l,
em pa
th et
ic a
nd n
o n-
th re
at en
in g
m an
ne r.
B y
em pa
th y,
t he
y m
ea nt
d o ct
o rs
sh
o w
in g
em o ti o n,
g en
ui ne
s ym
pa th
y an
d hu
m ili
ty , u
rg in
g th
em t
o r
ec o gn
iz e
m is
ta ke
s, d
o t
he ir
b es
t to
f ix
t he
m
an d
ap o lo
gi ze
if t
he y
go t
so m
et hi
ng w
ro ng
In a
dd it io
n, t
he y
va lu
ed a
d o ct
o r’
s co
m pe
te nc
e,
at te
nt io
n to
d et
ai l a
nd is
su es
b ey
o nd
t he
p hy
si ca
l ill
ne ss
, c le
ar a
nd s
en si
ti ve
s ha
ri ng
o f in
fo rm
at io
n th
at
ba la
nc ed
h o ne
st y
an d
ta ct
, c o m
m it m
en t, h
um an
ne ss
a nd
em
pa th
y. F
in al
ly , t
he y
va lu
ed t
he s
af et
y an
d tr
us t
w hi
ch
ca m
e w
it h
co nt
in ui
ty a
nd c
o ns
is te
nc y
o f ca
re b
y th
e fe
el in
g th
at d
o ct
o rs
k ne
w t
he m
H ig
h
(C on
tin ue
d)
T a b
le 2
. (C
o nt
in ue
d)
408 Palliative Medicine 29(5)
A ut
ho r
C o un
tr y
A im
Pa ti en
t ch
ar ac
te ri
st ic
s Se
tt in
g M
et ho
d Su
m m
ar y
o f re
le va
nt f in
di ng
s Q
ua lit
y as
se ss
m en
t
Jo hn
st o n
an d
Sm it h6
0 Sc
o tl an
d T
o e
xp lo
re t
he
pe rc
ep ti o ns
o f pa
ti en
ts
an d
nu rs
es in
p al
lia ti ve
ca
re a
nd , i
n pa
rt ic
ul ar
, th
e co
nc ep
t o f th
e ex
pe rt
pa
lli at
iv e
nu rs
e
22 p
at ie
nt s
dy in
g o f ca
nc er
, m o to
r ne
ur o n
di se
as e
o r
m ul
ti pl
e sc
le ro
si s
w it h
lif e
ex pe
ct an
cy
o f no
t m
o re
t ha
n 2
ye ar
s bu
t no
t le
ss
th an
2 w
ee ks
.
T w
o a
cu te
h o sp
it al
s an
d tw
o h
o sp
ic es
Ph en
o m
en o lo
gi ca
l s tu
dy , u
si ng
in -
de pt
h in
te rv
ie w
s fo
cu si
ng o
n pa
ti en
ts ’
ex pe
ri en
ce s
o f th
ei r
ca re
Pa rt
ic ip
an ts
p er
ce iv
ed t
ha t
ex pe
rt p
al lia
ti ve
n ur
si ng
c ar
e co
ns is
te d
o f ef
fe ct
iv e
in te
rp er
so na
l s ki
lls (
co nn
ec ti ng
w
it h
th e
pa ti en
t by
b ei
ng s
o m
eo ne
t o t
al k
to , b
ei ng
w
ill in
g to
li st
en a
nd t
o g
et t
o k
no w
t he
p at
ie nt
s) , a
nd
th e
nu rs
es m
ee ti ng
p at
ie nt
n ee
ds b
y he
lp in
g th
em , ‘
be in
g th
er e’
f o r
th em
, p ro
vi di
ng t
he m
w it h
em o ti o na
l s up
po rt
, pr
o vi
di ng
c o m
fo rt
a nd
, m o st
im po
rt an
tl y,
s pe
nd in
g ti m
e w
it h
th em
. P ar
ti ci
pa nt
s in
h o sp
ic es
h ig
hl ig
ht ed
t he
im
po rt
an ce
o f a
go o d
at m
o sp
he re
. C o m
pa re
d w
it h
a ho
sp it al
e nv
ir o nm
en t, t
he h
o sp
ic e
en vi
ro nm
en t
pr o vi
de s
sa fe
ty a
nd a
s an
ct ua
ry
H ig
h
K er
no ha
n et
a l.6
1 N
o rt
he rn
Ir
el an
d T
o e
va lu
at e
th e
ex te
nt t
o
w hi
ch d
ay h
o sp
ic e
se rv
ic es
m
ee t
th e
ne ed
s o f pa
ti en
ts
an d
th e
ph ilo
so ph
y o f
ho sp
ic e
ca re
in N
o rt
he rn
Ir
el an
d
26 p
at ie
nt s
w it h
ad va
nc ed
c an
ce r
di ag
no se
s
H o sp
ic e
da y-
ca re
s er
vi ce
s (o
ut pa
ti en
t) M
ul ti -p
ro fe
ss io
na l
Ex pl
o ra
ti ve
s tu
dy u
si ng
a
qu es
ti o nn
ai re
, c o ns
is ti ng
o f 26
it em
s w
hi ch
e st
im at
e as
pe ct
s o f pa
ti en
t sa
ti sf
ac ti o n,
in cl
ud in
g pe
rc ep
ti o ns
o f
re fe
rr al
s ys
te m
, p er
ce iv
ed b
en ef
it s
fr o m
a tt
en di
ng d
ay c
ar e,
s at
is fa
ct io
n w
it h
re ce
iv ed
s er
vi ce
s, a
w ar
en es
s o f th
e m
ul ti -p
ro fe
ss io
na l a
sp ec
t o f
te am
a nd
s ug
ge st
io ns
f o r
ar ea
s o f
im pr
o ve
m en
t. B
o th
c lo
se d
an d
o pe
n- en
de d
qu es
ti o ns
Pa rt
ic ip
an ts
e xp
re ss
ed t
ha t
o pp
o rt
un it y
fo r
so ci
al
in te
ra ct
io n
co ns
ti tu
te d
th e
pr im
ar y
be ne
fit o
f th
e se
rv ic
es , b
y he
lp f ee
lin gs
o f is
o la
ti o n
an d
bu ild
in g
co nf
id en
ce . M
o st
p at
ie nt
a tt
en de
d da
y ho
sp ic
es t
o
o bt
ai n
em o ti o na
l s up
po rt
a nd
/o r
sp ir
it ua
l c ar
e, t
o
pr o vi
de r
es pi
te f o r
fa m
ily m
em be
rs , t
o m
ee t
pa ti en
ts
in s
im ila
r si
tu at
io ns
, t o m
an ag
e sy
m pt
o m
s, t
o r
ec ei
ve
cr ea
ti ve
/r el
ax in
g th
er ap
ie s
an d
to a
cc es
s m
ed ic
al
st af
f an
d re
ha bi
lit at
iv e
se rv
ic es
( i.e
. o cc
up at
io na
l th
er ap
is t/
ph ys
ic al
t he
ra pi
st ). D
ay h
o sp
ic es
c o ul
d m
ee t
th e
pa rt
ic ip
an ts
c ha
ng in
g ne
ed s
an d
pr o vi
de d
a sa
fe
en vi
ro nm
en t. P
at ie
nt s
al so
a pp
re ci
at ed
t he
a w
ar en
es s
o f m
ul ti -p
ro fe
ss io
na l t
ea m
a nd
t ha
t th
e se
rv ic
e w
as w
el l
o rg
an iz
ed . B
ut s
o m
e w
is he
d th
at t
he d
ay h
o sp
ic e
w o ul
d be
a va
ila bl
e al
l d ay
w he
re o
th er
s w
as s
at is
fie d
w it h
th e
o pe
ni ng
h o ur
s, a
nd s
o m
e su
gg es
te d
th at
m o re
y o un
g pe
o pl
e sh
o ul
d be
a llo
w ed
t o a
tt en
d
M ed
iu m
La ak
ko ne
n et
a l.6
2 Fi
nl an
d T
o c
la ri
fy h
o w
t er
m in
al ly
ill
e ld
er ly
p at
ie nt
s in
a cu
te
w ar
ds p
er ce
iv e
th e
EO L
an d
th ei
r sp
ec ifi
c ne
ed s
an d
w is
he s
ab o ut
c ar
e
11 e
ld er
ly
pa ti en
ts w
it h
te rm
in al
il ln
es s
w it h
es ti m
at ed
pr
o gn
o si
s o f
< 6
m o nt
hs C
an ce
r (n
= 8
) O
th er
il ln
es se
s (n
= 3
): D
ia be
te s
w it h
pr o fo
un d
co m
pl ic
at io
ns ,
ha em
o ly
ti c
an ae
m ia
, t er
m in
al
H F
A ge
: 6 4–
89 y
ea rs
H o sp
it al
, a cu
te
ge ri
at ri
c w
ar d
Q ua
lit at
iv e
st ud
y. S
em i- st
ru ct
ur ed
, o pe
n- en
de d,
in -d
ep th
in te
rv ie
w s
us in
g a
to pi
c gu
id e
co nc
er ni
ng
cu rr
en t
ill ne
ss a
nd s
ym pt
o m
s, a
s w
el l a
s o pi
ni o ns
a bo
ut a
dv an
ce d
di re
ct iv
es , a
tt it ud
es a
bo ut
p ro
gn o si
s,
ch ar
ac te
ri st
ic o
f a
go o d
Q o L,
re
la ti o ns
hi ps
w it h
re la
ti ve
s an
d fr
ie nd
s an
d vi
ew s
o f a
go o d
de at
h
Pa rt
ic ip
an ts
’ n ee
ds a
nd w
is he
s fo
r ca
re in
cl ud
ed a
ct iv
e tr
ea tm
en t
an d
sy m
pt o m
r el
ie f.
Fu rt
he rm
o re
, t he
y w
is he
d to
t al
k w
it h
th ei
r do
ct o rs
a bo
ut t
he ir
il ln
es s,
al
th o ug
h ra
th er
t ha
n he
ar in
g ab
o ut
a p
o o r
di ag
no si
s th
ey w
an te
d to
h ea
r ab
o ut
t re
at m
en ts
t ha
t w
o ul
d m
ai nt
ai n
th ei
r ho
pe . T
he y
ap pr
ec ia
te d
ca ri
ng w
it h
a co
nc re
te t
o uc
h fr
o m
n ur
se s
bu t
al so
w is
he d
to t
al k
to
an d
ha ve
m o re
h el
p fr
o m
t he
m . F
in al
ly , t
he y
ex pr
es se
d w
is he
s fo
r sp
ec ia
l f o o d,
p ea
ce a
nd s
ec ur
it y
an d
th e
ab ili
ty t
o g
o h
o m
e
H ig
h
T a b
le 2
. (C
o nt
in ue
d)
Sandsdalen et al. 409
A ut
ho r
C o un
tr y
A im
Pa ti en
t ch
ar ac
te ri
st ic
s Se
tt in
g M
et ho
d Su
m m
ar y
o f re
le va
nt f in
di ng
s Q
ua lit
y as
se ss
m en
t
M cD
o nn
el l6
3 Ir
el an
d T
o a
ns w
er t
he q
ue st
io n:
‘D
o es
t he
h o sp
ic e
m ee
t th
e ne
ed s
o f pa
ti en
ts w
ho
ar e
in t
he t
er m
in al
s ta
ge s
o f ca
nc er
?’
50 t
er m
in al
ly
ill c
an ce
r pa
ti en
ts . M
ed ia
n ag
e =
6 8
ye ar
s
H o sp
ic e
in pa
ti en
t se
rv ic
e U
ns tr
uc tu
re d,
in fo
rm al
in te
rv ie
w s
be fo
re a
nd 8
d ay
s af
te r
ad m
is si
o n
to
ho sp
ic e,
u si
ng u
ns tr
uc tu
re d
in fo
rm al
in
te rv
ie w
s ba
se d
o n
a se
t o f to
pi cs
. Fi
rs t, in
te rv
ie w
t o pi
cs in
cl ud
ed
aw ar
en es
s o f dy
in g,
p ro
bl em
s/ ph
ys ic
al c
o m
pl ai
nt s/
ps yc
ho lo
gi ca
l ne
ed s,
r ef
er en
ce s
to h
o sp
ic e
an d
ex pe
ct at
io ns
o f ho
sp ic
e/ ho
pe s/
fe ar
s.
Fo llo
w -u
p in
te rv
ie w
t o pi
cs in
cl ud
ed
ge ne
ra l o
pi ni
o n
o f th
ei r
ca re
, p hy
si ca
l ca
re /c
o m
pl ai
nt s,
a nd
p er
ce pt
io ns
o f th
e pl
ac e/
st af
f/ co
m m
un ic
at io
n an
d pr
es en
t fe
el in
gs . O
nl y
31 o
f 50
co
nd uc
te d
a fo
llo w
-u p
in te
rv ie
w
Pa rt
ic ip
an ts
e xp
re ss
ed e
xp ec
ta ti o ns
a nd
h o pe
f o r
ph ys
ic al
im pr
o ve
m en
t, p
sy ch
o lo
gi ca
l p ea
ce , s
pi ri
tu al
su
pp o rt
a nd
p le
as an
t en
vi ro
nm en
ta l s
ur ro
un di
ng s.
H
o w
ev er
, b ef
o re
a dm
is si
o n
to h
o sp
ic e,
t he
y al
so
ex pr
es se
d fe
ar s
ab o ut
a h
o sp
ic e
as a
p la
ce t
o d
ie ,
m ee
ti ng
n ew
p eo
pl e,
n o t
co m
in g
ho m
e ag
ai n,
le av
in g
fa m
ili es
a nd
t he
d is
co nt
in ua
nc e
o f cu
rr en
t ca
re . A
ft er
ad
m is
si o n
to a
h o sp
ic e,
p at
ie nt
s pr
ai se
d be
in g
ab le
to
t al
k fr
ee ly
w it h
st af
f, fe
el in
g m
o re
f re
e, b
ei ng
in
a re
la xe
d at
m o sp
he re
a nd
t he
o ve
ra ll
ca re
( ph
ys ic
al
co m
pl ai
nt s
w er
e re
du ce
d) , t
he s
ta ff
an d
th e
pl ac
e. T
he y
w is
he d
th at
t he
y ha
d kn
o w
n ab
o ut
t he
h o sp
ic e
ea rl
ie r.
St
ill , e
ve n
th o ug
h th
ey w
er e
no t
so rr
y to
h av
e be
en
ad m
it te
d to
a h
o sp
ic e,
t he
y w
o ul
d ha
ve p
re fe
rr ed
t o b
e at
h o m
e. T
he h
o sp
ic e
ch an
ge d
th e
fo cu
s o f at
te nt
io n
fr o m
s ym
pt o m
s an
d di
st re
ss t
o f ee
lin gs
a nd
t he
e ffe
ct s
o f th
e ne
w e
nv ir
o nm
en t
o n
pa ti en
ts
M ed
iu m
M ic
ci ne
si
et a
l.6 4
It al
y T
o d
es cr
ib e
EO L
pr ef
er en
ce s
an d
to
un de
rs ta
nd t
he a
ss o ci
at io
n be
tw ee
n pr
ef er
en ce
s an
d pa
ti en
t de
m o gr
ap hi
cs ,
cl in
ic al
c ha
ra ct
er is
ti cs
, lif
e st
an ce
a nd
a tt
it ud
es
to w
ar ds
p re
pa ra
ti o n
fo r
de at
h
88 p
at ie
nt s
w it h
ad va
nc ed
c an
ce r.
A
ve ra
ge a
ge :
66 .3
y ea
rs .
T hr
ee p
al lia
ti ve
ca
re s
et ti ng
s:
am bu
la to
ry , h
o m
e ca
re a
nd h
o sp
ic e
In te
rv ie
w s
tu dy
u si
ng T
he E
nd o
f Li
fe P
re fe
re nc
es I nt
er vi
ew (
EL PI
), a
23
-i te
m in
te rv
ie w
in st
ru m
en t, a
sk in
g pa
ti en
ts a
bo ut
p at
ie nt
p re
fe re
nc es
f o r
ca re
, p at
ie nt
p re
pa ra
ti o n
fo r
de at
h an
d w
ill in
gn es
s to
t al
k ab
o ut
t he
se
is su
es
A ll
pa ti en
ts p
re fe
rr ed
t o r
ec ei
ve s
o m
e in
fo rm
at io
n ab
o ut
t he
d is
ea se
p ro
ce ss
a nd
m o st
p re
fe rr
ed t
o
ta ke
p ar
t in
t he
m ed
ic al
a nd
n ur
si ng
d ec
is io
n- m
ak in
g pr
o ce
ss , b
ut in
d iff
er en
t w
ay s;
8 %
p re
fe rr
ed t
o d
el eg
at e
de ci
si o ns
t o t
he m
ed ic
al s
ta ff.
M en
c o m
m o nl
y pr
ef er
re d
be in
g in
fo rm
ed a
bo ut
t he
ir d
et er
io ra
ti ng
c o nd
it io
ns .
Sy m
pt o m
c o nt
ro l,
es pe
ci al
ly f o r
pa in
a nd
d ys
pn o ea
, w
as im
po rt
an t. F
o r
ha lf
th e
pa ti en
ts , f
am ily
m em
be rs
o r
fr ie
nd s
w er
e pr
ef er
re d
as c
ar eg
iv er
s co
m pa
re d
w it h
pr o fe
ss io
na l w
it h
re ga
rd t
o p
hy si
ca l c
ar e
de liv
er y.
T
he im
po rt
an ce
o f ha
vi ng
s o m
eo ne
c lo
se w
he n
fa ci
ng
di ffi
cu lt m
o m
en ts
w as
e xp
re ss
ed b
y 60
% o
f th
e pa
ti en
ts .
Pr ef
er en
ce s
fo r
m ea
ni ng
fu l a
ct iv
it ie
s, f o r
ex am
pl e,
to
t ra
ve l,
to a
rr an
ge o
ne ’s
o w
n bu
si ne
ss , i
m pr
o ve
re
la ti o ns
hi ps
a nd
t o b
e at
p ea
ce , w
er e
ex pr
es se
d by
a lm
o st
t w
o -t
hi rd
o f th
e pa
ti en
ts , w
he re
as 2
9%
ex pr
es se
d no
s uc
h pr
ef er
en ce
s. I t
w as
a ls
o im
po rt
an t
fo r
pa ti en
ts t
o p
re pa
re f o r
th ei
r o w
n de
at h
by b
ei ng
ab
le t
o s
ay g
o o db
ye , h
av in
g lo
ve d
o ne
s cl
o se
a t
th e
m o m
en t
o f de
at h,
w ri
ti ng
a w
ill , s
o lv
in g
an y
co nf
lic ts
, le
av in
g pr
o vi
si o ns
f o r
bu ri
al a
nd c
ho o si
ng w
he re
t o d
ie .
In t
o ta
l, 68
% w
an te
d to
d ie
in t
he ir
h o m
es a
nd m
o st
w
an te
d to
d ie
h ea
vi ly
s ed
at ed
. M o st
p re
fe rr
ed t
he
at m
o sp
he re
t o b
e re
la xe
d, w
ar m
, i nt
im at
ed o
r ne
ut ra
l; th
e le
as t
lik ed
a tm
o sp
he re
w as
li ve
ly a
nd d
is tr
ac ti ng
. M
o st
p at
ie nt
s fo
un d
it v
er y
im po
rt an
t to
t al
k ab
o ut
fe
ar s
o f de
at h
an d
dy in
g an
d fin
di ng
m ea
ni ng
. M o st
pr
ef er
re d
vi si
ts b
y a
m in
is te
r o f th
ei r
re lig
io us
f ai
th a
nd
pe rf
o rm
an ce
s o f re
lig io
us r
it ua
ls .
H ig
h
(C on
tin ue
d)
T a b
le 2
. (C
o nt
in ue
d)
410 Palliative Medicine 29(5)
A ut
ho r
C o un
tr y
A im
Pa ti en
t ch
ar ac
te ri
st ic
s Se
tt in
g M
et ho
d Su
m m
ar y
o f re
le va
nt f in
di ng
s Q
ua lit
y as
se ss
m en
t
T an
ak a
et
a l.6
5 Ja
pa n
T o c
la ri
fy h
o w
t er
m in
al ly
ill
p at
ie nt
s th
in k
an d
fe el
w
hi le
h o sp
it al
iz ed
8 te
rm in
al ly
il l
pa ti en
ts w
it h
ad va
nc ed
c an
ce r
A ge
: 5 1–
93 y
ea rs
G en
er al
h o sp
it al
, ge
ne ra
l m ed
ic al
u ni
t fo
r pa
lli at
iv e
ca re
Q ua
lit at
iv e
de sc
ri pt
iv e
m et
ho d.
In
di vi
du al
, s em
i- st
ru ct
ur ed
in te
rv ie
w s
as ki
ng p
at ie
nt s
ab o ut
t he
ir w
is he
s an
d th
ei r
fe ar
s, k
no w
in g
th at
t he
y ha
ve a
n in
cu ra
bl e
di se
as e
Im po
rt an
t as
pe ct
s o f pa
lli at
iv e
ca re
a s
id en
ti fie
d by
pa
rt ic
ip an
ts in
cl ud
ed f ir
st , m
ai nt
ai ni
ng p
ai n
co nt
ro l,
th en
m ai
nt ai
ni ng
a n
o rd
in ar
y lif
e, h
av in
g ho
pe f o r
im pr
o ve
m en
t o f ph
ys ic
al c
o nd
it io
n an
d ha
vi ng
f am
ily
ne ar
by . T
he d
es ir
e to
li ve
li fe
t o it
s fu
lle st
g iv
en t
he ir
si
tu at
io n,
a s
w el
l a s
to m
ai nt
ai n
a ho
pe fu
l a tt
it ud
e ab
o ut
th
ei r
fu tu
re , w
as im
po rt
an t
M ed
iu m
T o rk
e
et a
l.6 6
U SA
T o c
ha ra
ct er
iz e
th e
vi ew
s to
w ar
ds E
O L
ca re
a m
o ng
se
ri o us
ly il
l A fr
ic an
- A
m er
ic an
p at
ie nt
s
23 p
at ie
nt s
w it h
ad va
nc ed
il ln
es s
C an
ce r
(n =
3 )
A ID
S (n
= 1
2) C
o ng
es ti ve
H F
(n =
5 )
C ir
rh o si
s (n
= 3
) A
ge : 2
3– 84
y ea
rs
In pa
ti en
ts in
a n
ur ba
n pu
bl ic
ho
sp it al
Q ua
lit at
iv e
st ud
y us
in g
gr o un
de d
th eo
ry a
pp ro
ac h.
S em
i- st
ru ct
ur ed
in -
de pt
h in
te rv
ie w
s hy
po th
et ic
al ly
a sk
in g
pa ti en
ts a
bo ut
u nd
er st
an di
ng o
f th
ei r
di se
as e
an d
it s
pr o gn
o si
s, e
xp ec
ta ti o ns
ab
o ut
E O
L ca
re , r
el at
io ns
hi ps
w it h
fa m
ily a
nd lo
ve d
o ne
s an
d ph
ys ic
ia n’
s ro
le a
bo ut
E O
L ca
re
Pa rt
ic ip
an ts
d id
n o t
ex pe
ct t
o d
ie s
o o n.
T he
re fo
re
di d
no t
fe el
t ha
t EO
L pl
an ni
ng a
nd d
is cu
ss io
n w
er e
ne ce
ss ar
y at
t hi
s po
in t. A
t a
hy po
th et
ic al
le ve
l, th
ey h
ad
di ve
rs e
w is
he s
fo r
EO L
ca re
, s o m
e w
an ti ng
a p
ea ce
fu l
de at
h an
d o th
er s
co nt
in ui
ng a
gg re
ss iv
e ca
re . B
o th
gr
o up
s w
an te
d to
b e
fr ee
o f pa
in a
nd s
uf fe
ri ng
. S pi
ri tu
al
be lie
fs a
nd n
ee ds
w er
e hi
gh lig
ht ed
. P at
ie nt
s fo
un d
co m
fo rt
in b
ei ng
in G
o d’
s ha
nd s,
a nd
t hi
s be
lie f im
pl ie
d th
at d
is cu
ss io
ns a
bo ut
E O
L w
er e
no t
ne ed
ed a
nd
be yo
nd t
he s
co pe
o f th
e do
ct o r’
s pr
ac ti ce
. H o w
ev er
, pa
ti en
ts w
an te
d th
ei r
do ct
o r
to p
ra y
w it h
th em
. Fu
rt he
rm o re
, p at
ie nt
s w
an te
d a
be tt
er d
o ct
o r
– pa
ti en
t re
la ti o ns
hi p,
im pr
o ve
d co
m m
un ic
at io
n an
d in
fo rm
at io
n,
a m
o re
t ru
st in
g re
la ti o ns
hi p
w it h
th e
do ct
o r
an d
th e
re as
su ra
nc e
th at
t he
d o ct
o rs
t ru
st ed
t he
ir w
is he
s. T
he
la ck
o f co
nt in
ui ty
( se
ei ng
m ul
ti pl
e do
ct o rs
) w
as v
ie w
ed
as a
b ar
ri er
t o a
h el
pf ul
r el
at io
ns hi
p. P
at ie
nt s
ge ne
ra lly
ex
pr es
se d
co nf
id en
ce t
ha t
th e
fa m
ily w
o ul
d be
a bl
e to
m
ak e
th e
ri gh
t de
ci si
o ns
w he
n th
e ti m
e ca
m e.
S o m
e,
ho w
ev er
, w er
e in
te re
st ed
in le
ar ni
ng m
o re
a bo
ut
ad va
nc ed
c ar
e pl
an ni
ng
M ed
iu m
Y eu
ng
et a
l.6 7
H o ng
K o ng
, C
hi na
T o e
xp lo
re t
he n
ee ds
an
d co
nc er
ns o
f pa
ti en
ts
w it h
te rm
in al
c an
ce r
in a
ho
sp ic
e en
vi ro
nm en
t, a
nd ,
to e
va lu
at e
th e
Q o L
o f
th es
e pa
ti en
ts a
s it r
el at
es
to t
he c
ar e
an d
se rv
ic es
cu
rr en
tl y
be in
g pr
o vi
de d
52 t
er m
in al
ly
ill p
at ie
nt s
w it h
ca nc
er M
ea n
ag e:
65
.3 y
ea rs
Pa ti en
ts a
dm it te
d to
in pa
ti en
t ho
sp ic
e ca
re . 1
1 ho
sp it al
- ba
se d
ho sp
ic e
un it s
Q ue
st io
nn ai
re d
at a
w er
e ga
th er
ed
by m
ea ns
o f fa
ce -t
o -f
ac e
in te
rv ie
w s
w it h
an in
st ru
m en
t co
ns is
ti ng
o f 25
it em
s, e
st im
at in
g im
po rt
an ce
o f an
d pe
rc ei
ve d
ef fe
ct iv
en es
s (i n
te rm
s o f th
ei r
Q o L)
o f th
e ca
re p
ro vi
de d
ac co
rd in
g to
a L
ik er
t sc
al e,
w it h
a ra
ng e
o f 1
(u ni
m po
rt an
t) t
o 4
( ve
ry
im po
rt an
t) . T
he e
ffe ct
s o f ho
sp ic
e ca
re s
er vi
ce s
o n
pa ti en
t’ s
Q o L
w er
e as
se ss
ed b
y as
ki ng
p ar
ti ci
pa nt
s to
r at
e ea
ch it
em o
n a
sc al
e o f 1
(n o t
he lp
fu l)
to 4
( ve
ry h
el pf
ul )
Im po
rt an
t co
m po
ne nt
s o f a
go o d
ho sp
ic e
in cl
ud ed
fu
lfi lli
ng p
hy si
ca l n
ee ds
s uc
h as
e no
ug h
re st
a nd
s le
ep ,
hy gi
en e,
s ym
pt o m
c o nt
ro l,
im pr
o ve
m en
t o f ap
pe ti te
, an
d pr
o vi
si o n
o f a
co m
fo rt
ab le
a nd
s af
e en
vi ro
nm en
t;
fu lfi
lli ng
p sy
ch o so
ci al
n ee
ds b
y fa
ci lit
at in
g vi
si ts
f ro
m
fa m
ily a
nd f ri
en ds
a nd
h el
p in
s o lv
in g
fin an
ci al
a nd
pr
ac ti ca
l p ro
bl em
s, e
ffe ct
iv e
su pp
o rt
b y
st af
f, fr
ie nd
ly
an d
ac ce
pt in
g be
ha vi
o ur
a nd
a tt
it ud
es o
f st
af f,
ef fe
ct iv
e an
d ho
ne st
c o m
m un
ic at
io n
an d
su pp
o rt
f o r
fa m
ily .
A re
as f o r
im pr
o ve
m en
t in
cl ud
ed h
el pi
ng p
at ie
nt s
to
m ax
im iz
e se
lf- ca
re a
nd m
o bi
lit y,
d is
pe l f
ea rs
a bo
ut
de at
h, g
et e
no ug
h re
st a
nd s
le ep
, b e
av ai
la bl
e an
d w
ill in
g to
li st
en a
nd g
iv e
re as
su ra
nc e,
p ro
vi de
a pp
ro pr
ia te
d ie
t an
d im
pr o ve
a pp
et it e
an d
fu lfi
l u nf
in is
he d
bu si
ne ss
M ed
iu m
a P ub
lic at
io n
o f th
e sa
m e
st ud
y as
H ey
la nd
e t
al .5
5
C O
PD : c
hr o ni
c o bs
tr uc
ti ve
p ul
m o na
ry d
is ea
se ; C
PR : c
ar di
o pu
lm o na
ry r
es us
ci ta
ti o n;
E O
L: e
nd o
f lif
e; H
F: h
ea rt
f ai
lu re
; Q o L:
q ua
lit y
o f lif
e.
T a b
le 2
. (C
o nt
in ue
d)
Sandsdalen et al. 411
rigour in the analysis steps. Finally, themes and subthemes were identified and their internal relationships described (conclusion and verification). Throughout the analysis, preferences were verified using primary sources to ensure accuracy and reliability. Further reflections on this synthe- sis are presented in ‘methodological considerations’.
Results
Characteristics of included studies
These are presented in Table 3. Studies included (n = 23) were from North America (7 (30%)), European countries (11 (48%)), Australasia (2 (9%)), Asia (2 (9%)) and the Middle East (1 (4%)). The studies represent research from 1982 to 2013, with most being published during the last decade (16 (70%)). Of them, 13 (57%) studies used quali- tative methods and 10 (43%) used quantitative methods. No systematic reviews were identified.
A total of 1583 patients, with an age range of 23– 101 years, participated in the 23 studies. Of the studies, 13 (57%) studies reported on patients with can- cer45–47,50,52,53,58,59,61,63–65,67 and one study55 reported respective findings for patients with cancer,55 chronic obstructive pulmonary disease (COPD)56 and heart fail- ure (HF).57 Eight studies reported combined findings on patients with either advanced cancer or other life- threatening illness,48,49,51,54,55,60,62,66 such as end-stage liver disease/cirrhosis, COPD, HF, human immunodefi- ciency virus/acquired immune deficiency syndrome (HIV/AIDS), accident-related injury, motor neuron dis- eases (MNDs), diabetes with profound complications and haemolytic anaemia. Three studies reported on elderly patients who were frail or terminally ill.44,49,62
Social status was reported in 12 (52%) stud- ies.46,47,49–51,53,55,62,64–67 Of the study participants in these studies (n=978), 606 (62%) were married or had a partner, whereas 372 (38%) were single, widowed, divorced or separated. Six studies (26%) reported on living arrange- ment for patients, with 66% of patients living with family or friends and 34% alone. No study reported whether patients had children aged <18 years.
Five of the studies were conducted in hospi- tals,48,55,62,65–67 three in hospice or palliative day care,51,58,61 three in home care,43,46,50 two in long-term care ser- vices,44,49 one in hospice inpatient service,61 one in a pal- liative outpatient clinic,45 one in general practice59 and five from multiple services.47,53,54,60,64
Thematic findings
In Table 4, the themes representing patient preferences for palliative care are shown. The theme ‘Living a meaning- ful life’ illustrated what patients strived for. To focus on living, it was necessary to have some prerequisites,
relating to the responsiveness of the healthcare system surrounding the patient: healthcare personnel, environ- ment and organization.
Living a meaningful life. Patients wanted to retain their self- worth and live as normal and as meaningful a life as pos- sible, which contributed to preferences for healthcare personnel and services that conveyed a focus on living, not necessarily as long as possible, but as meaningfully as possible.
Being who I am. Maintenance of self-worth was important for patients58 who preferred help to achieve this and preserve their dignity.43,44,49,50,51,55 They pre- ferred to be recognized and treated as individual human beings,43,48,53–55,59,60 by personnel getting to know them for whom they were, as people with history and values, and responding to individual needs.43,45,48,54,55,58,59,67 Sustaining one’s identity was important, connected with patients’ pre- ferred help to live the rest of their lives as normally as pos- sible. Staff actions and attitudes that promoted normality and encouraged the continuance of regular activities were therefore important.43,65
Being with people I love. The focus on living involved being with people whom patients loved and enjoyed.45,64,65,67 Family and friends were the main source of support and strength50,65 by being there for patients, reassuring them and having a history of managing hard times together.65 Patients therefore preferred facilitation of companionship and care by family and friends64,67 and opportunities to maintain and strengthen important relationships.55,64
Doing the things I like. Doing the things I like involved doing meaningful activities, things that patients liked doing. It also referred to doing something useful, contrib- uting to others and being able to complete things and pre- pare for life’s end. Therefore, patients preferred healthcare personnel and services to provide assistance in achieving this.45,47,49,50,54,55,58,61,67 Being engaged in activities made patients feel like they had escaped their sick roles.58 Those patients who were no longer able to engage in their favourite activities wanted help finding new activities.58 Even though one study found that preferences for meaningful activities were expressed by almost two-thirds of the participants,64 some patients did not express such preferences,51,64 highlight- ing the importance of an individual approach when arranging activities and helping patients prepare for life’s end.
Having hope for the future. To live a meaningful life also involved hope for the future.65 Patients expressed prefer- ences for their care to focus on hope, for example, hope for comfort, peace and future treatment.62,63 One study, in con- trast, showed that some patients no longer had any wishes about their care due to deteriorating illness.62
412 Palliative Medicine 29(5)
Table 3. Characteristics of patients in included studies.
Demographic data Studies reported (n = 23) Results of studies reported
Studies Geographical data 23 USA (n = 5) Canada (n = 2) England (n = 4) Scotland (n = 2) Netherlands (n = 1) Northern Ireland (n = 1) Ireland (n = 1) Finland (n = 1) New Zealand (n = 1) Australia (n = 1) China (n = 1) Japan (n = 1) Israel (n = 1) Italy (n = 1) Participants Age 23 23–101 years Gender 18 52% male 48% female Diagnosis 21 Studies with findings from participants who had cancer (n = 13) Studies with combined findings from participants who had
cancer or other advanced illness (n = 8) Of these, one study54 presented separate publications with
findings for participants who had HF,56 COPD,55 cancer54 and other advanced illness54
Life expectancy or length before death
11 Studies reported on patients’ life expectancy (n = 11), but did so in various ways (life expectancy, percentage of participants dying within a certain time after the study period or time in care before death)
Life expectancy or time before death in the included studies varied from 6 months to 2 years
Education 8 All of these eight studies had participants with different levels of education (primary and secondary school, college or university), except one study where almost half of the participating patients had no education, and only 2% with medium level of education (college)66
Social status 12 62% were married or had a partner 38% were single, widowed, divorced or separated Ethnicity 8 Ethnicity of patients included in these 8 studies were 86% White 5% Black/African-American 4% aboriginal 5% other (e.g. Indian, native American, native Alaskan, Hispanic,
Asian) One study reported on a specific ethnic group of participants,
Black/African-Americans65
Religion 5 Religions of patients included in these five studies were Christians, Catholics, Jewish, Muslims, Buddhists, Japanese Shumei and participants who had no religious affiliation
Setting
Rural or urban setting
5 Urban setting (n = 2) Rural setting (n = 1) Both rural and urban settings (n = 2)
Services 22 Hospitals (n = 6) Hospice or palliative day care (n = 3) Home care (n = 3) Long-term care services (n = 2) Hospice inpatient service (n = 1)
Sandsdalen et al. 413
Responsive healthcare personnel. The literature revealed that patients expressed preferences for healthcare person- nel who were responsive to their and their family’s needs for support. Furthermore, a good relationship with the healthcare personnel and a feeling of participation were important aspects of patients’ preferences.
Receiving support for me and my family. Included support and help from competent healthcare personnel,45,46,49,53,54,59,60 for example, help with symptom control and relief of pain and suffering.43,44,47–49,52–55,61,62,64,65,67 Patients also expressed preferences for psychosocial support,43,45,46,48,50,52–55,58–63 that is, provision of social contact, treatment of anxiety and depression, and support with emotional problems. Patients preferred having their personal beliefs and reli- gion respected. In addition, they expressed preferences for the facilitation of religious activities and services, to gain inner peace,45,48,54,61–64,66,67 especially in a study where most participants had a religious background.64 In contrast, some studies found that some patients did not want to participate in spiritual activities62,64 because these were associated with imminent death62 or they were not religious or due to the lack of influence of religion, for example, Chinese culture.67
Preferences for practical help included personal hygiene, transport, food supply and preparation, housekeeping, medical equipment and adaptations of the home.50–52,61,62,67 Finally, patients had preferences for financial and legal assistance to help solve any financial problems.52,54,55,65,67
Support also included support for family and frie- nds.43,45,49,51,52,55,61,67 Patients worried about the wellbeing of their families and being a burden to their loved ones,49,53–55 so they expressed preferences for palliative services with a clear family focus, including respite care43,45,51,52,55,61 and other family support.45,52,55,61,67
Having a good relationship with healthcare personnel. Included preferences for a relationship built on respect,48,49,55,59 trust,46,54,55,61,66 friendliness,45,63,67 patience50 and compassion.49,54,55,57,58,67 Patients expressed preferences for personnel who communicated with them by spending time listening43–46,48,50,53,54,58–60,67 to their concerns, using an interactive dialogue45 and contributing to being under- stood.58 Furthermore, staff should provide a caring touch,59,62 treat the patient in a manner that preserves their dignity54,55 and express empathy59 and support.54 The importance of a good relationship with healthcare
Demographic data Studies reported (n = 23) Results of studies reported
Palliative outpatient clinics (n = 1) Doctors (n = 1) Multiple services (n = 5) Specialized/non-
specialized 22 Services described as specialized in palliative care (palliative or
hospice care) (n = 10) Services not described as specialized in palliative care (n = 8) Multiple services from both specialized or non-specialized
palliative care (n = 4) Length of time in
care 6 Length of time in care ranged from 7 days to 4 years
COPD: chronic obstructive pulmonary disease; HF: heart failure.
Table 3. (Continued)
Table 4. Descriptions of thematic findings.
Themes Subthemes
Living a meaningful life Being who I am Being with the people I love Doing the things I like Having hope for the future Responsive healthcare personnel Receiving support for me and my family Having a good relationship with healthcare personnel Participating in the care Responsive care environment Being cared for in a safe, comfortable and relaxed atmosphere Being with fellow patients and having privacy Being in the place of care consistent with my choice Responsiveness in the organization of care Receiving help when needed Continuity and coordination of care received
414 Palliative Medicine 29(5)
professionals was especially highlighted in terms of patients with no family or difficult family relationships,48,53 because of the disadvantage that they experienced, both practical and emotional, of living alone.64 In addition, patients empha- sized their preference for honest and easy-to-understand information, expressed in a sensitive manner that preserves hope.43–47,54,55,59,62,66,67 In particular, patients wanted honest information about their disease,43,44 treatment43 and progno- sis,43,49,54 although these preferences may be associated with the diagnosis and gender. One study identified that fewer patients with COPD wanted to know about their prognosis and disease progression than patients with cancer,56 whereas another study found that men more commonly preferred being informed about deteriorating conditions.64
To participate in the care. Important to both the relation- ship with and support from healthcare personnel. Patients’ rights and desires for autonomy, control and empowerment were important.43,45,48,49,55,59,67 Patients preferred being rec- ognized and included in the team43,59 to ensure that deci- sion-making about care and treatment level accorded with their wishes.43,54,55,66,67 But patients also highlighted the need for help in making difficult treatment decisions.43,46,55 The findings showed a variety of preferences for levels of participation and decision-making. Some patients wanted to be empowered to make their own decisions, whereas others wanted a shared approach or to leave difficult decisions to their families or doctors.46,49,54,55,62,66,64 Participation in plan- ning future care also included differences in preferences for treatment level: some wanted a peaceful death with no pro- longation of life,44,49,55,62,66 whereas others wanted to con- tinue treatment and prolongation of life.44,62,66 It appeared that these differences may be associated with the diagnosis, one study finding that patients with COPD preferred care with a stronger focus on prolongation of life, compared with patients with cancer.56 Importantly, patients did not always prefer to discuss death and dying when making plans for future care with healthcare personnel, or family, because of personal or family discomfort, fear or denial49,67 or for cul- tural reasons.62,67 They may not have wanted this until death was imminent,53,66 highlighting the importance of sensitiv- ity to patient preferences and well-timed discussions.
Patients preferred family participation, through the pro- vision of information and help for families to under- stand.43,55,67 Some even wanted family to be included in the healthcare team59 to participate in decision-making about care, treatment54,66 and planning.43
Responsive care environment. This theme contained both the patients’ physical environment and the atmosphere in their care setting. Patients preferred care environments that were responsive to their preferences about atmosphere, fellow patients and place of care.
Being cared for in a safe, comfortable and relaxed atmosphere. Patients expressed preferences for a care
environment that they perceived as safe, comfortable, friendly and relaxed.45,51,54,55,60,61,62,67 For example, one study found that the atmosphere that was least preferred was a lively and distracting one, with most patients pre- ferring a relaxed, warm and intimate atmosphere.64
Being with fellow patients and having privacy. Some patients considered fellow patients an important resource. They preferred interaction with others in a similar situa- tion and so likely to understand them.45,61 This provided a feeling of wellbeing and independence.45 Other patients wanted privacy,55,67 such as a private room, to allow patients and families to be comfortable and able to discuss matters privately.55
Being in the place of care consistent with my choice. Patients wanted to be cared for in an environment of their choice,55,64 expressing various preferences about where to be cared for and where to die. In particular, studies highlighted patients’ preferences to be cared for at home, for as long as possible, or to be able to die at home,43,44,48,49,52–55,63,64 although there were also preferences for dying or being cared for in institutions.52,53 For example, one study in the United Kingdom highlighting preferences for patients liv- ing alone found that participants had concerns about place of care if they were unable to remain in their own homes.53 Those attending day hospice expressed the preference to die in a hospice, but moving into a care home was a source of anxiety because of the costs and perception that there are no nice places to spend their final days.53
Responsiveness in organization of palliative care services. Patients preferred palliative care services organized to respond to their preferences, including receiving help when needed and services that were well coordinated, well planned for and provided continuity.
Receiving help when needed. Patients preferred access to help when needed,43,45–48,52–55,61,63 including availability of and access to multi-professional healthcare personnel (i.e. doctors, physiotherapist, occupational therapists and chaplain services),48,54,55,61 knowledge, particularly about whom to contact,46 availability of services,43,45,47,55,61,63 access to the preferred care service47,48 and recreation where possible or necessary.52
Continuity and coordination of care received. Patients expressed preferences for continuity of care in general, and with regard to their doctors45,59,66 and nurses in par- ticular.55 This included knowing who was in charge55 and knowing them personally52,53,59 which contributed to a feeling of safety and trust. Patients preferred the different healthcare professionals to provide coordinated care47 and to cooperate and work as a team.54 They also preferred ser- vices to be well coordinated, with a plan for palliative care that could be used when patients were transferred from
Sandsdalen et al. 415
one service to another.55 This also ensured that adequate information about the patient was transferred, so that doc- tors and nurses had sufficient information about them to provide the best care.54,55
Discussion
The results indicate that patients would like palliative care to help them achieve ‘living a meaningful life’. To focus on living, patients preferred their healthcare system to be responsive, including personnel, environment and organi- zation of palliative care.
Each theme from the thematic findings is represented by all the studies included, suggesting that preferences for care seem to have more similarities than differences, even if the studies were conducted in different cultures and over a time span of 31 years. Within the themes, there were both similarities and differences in preferences, highlighting the importance of individual preferences. Previous research suggests similarities in patient preferences for care22 and the care environment26 and differences with regard to deci- sion-making.28 However, because of the small number of comparisons of preferences among subgroups of patients and insufficient demographic information in the literature, this review cannot comprehensively include preferences for subgroups of patients. Nevertheless, it is unclear whether and how preferences differ between subgroups.
Contribution
The findings contribute with knowledge about preferences for care from the patient perspective. Such knowledge is important for the development of services, defining stand- ards and performing care in clinical practice, to ensure care in line with patient preferences.
The WHO maintains that palliative care should focus on quality of life until death.35 Quality of life, in this con- text, is often related to symptoms, functioning and psycho- logical wellbeing and measured by instruments that are frequently criticized for being too narrow and not targeting goals, for example, meaning, purpose, spirituality and grief.68 Patient preferences include support for symptom control, function and psychological wellbeing, and they want to continue to live a meaningful life. Previous research has similarly highlighted the importance of help- ing patients to receive meaningful palliative care.69 With a limited time to live, being relieved of meaningless activi- ties and encouraged to engage in activities perceived as personally purposeful is crucial. This goal should be included in both research and clinical practice.
Living a meaningful life also included ‘Being who I am’ and being recognized as a whole person. Ternestedt et al. developed a person-centred model of palliative care called ‘The 6 S key words’,70 including symptom control, self- determination, social relationships, self-image, synthesis
and surrender.69,70 This model highlights the importance of helping patients to have a self-image when planning, docu- menting and evaluating care.69 Although the importance of a holistic person-centred approach is recognized in pallia- tive care, patients do not always experience such care.5,13 With this approach, it is important that personnel gain insight into the preferences of patients, thereby seeing patients as having subjective experiences and taking an active part in their own care and related decision-making.71 The findings support continued work towards implementa- tion of person-centred models in palliative care, thereby meeting patient preferences for meaningfulness.
The findings further highlight the importance of a good relationship between patients and healthcare personnel, which is confirmed by previous research.5,8,10 In addition, this review highlighted the importance of a good relation- ship with healthcare personnel for patients with no family or difficult family relationships.48,53 Given that 38% of the participants in the included studies are single, widowed, divorced or separated, and 34% live alone, a considerable proportion may depend on a good relationship with health- care professionals. In addition, patients expressed prefer- ences for being cared for in a place of their choice. Previous research has found that most patients in palliative care pre- fer to be cared for, and able to die, at home.29 However, this is not achievable for many72 and dying at home may be difficult to fulfil for patients with no informal caregiver.73 This points out the importance of further investigations of patients without close family, and tailoring of palliative care services according to specific preferences and family situations.
The findings indicate that many patients want to partici- pate in decisions about care and treatment, at various lev- els, and some also want involvement of their family. Bélanger et al.28 found that most patients wanted to partici- pate in their own care, but highlighted the importance of discussing their preferred role with them. Inclusion of the family is important,34 although their participation in deci- sion-making needs further exploration.28 The findings sug- gest that it may be important to discuss both patient and family involvement with the patient.
Overall, patients preferred being cared for in a comfort- able, friendly and relaxed environment, with fellow patients, but with an opportunity for privacy. This is partly confirmed by reviews by Rigby et al.26 and Brereton et al.,27 which highlighted that the environment should be home like and support patients’ needs for social activity, privacy and caring activities, while allowing opportunities for spiritual expression and close connections with family and friends, home and nature. They both emphasized the importance of including the environment as an integral element in palliative care.
Patients preferred access to palliative care when needed; they also preferred an organization that supported this type of access as well as well-coordinated, well-planned and
416 Palliative Medicine 29(5)
high-continuity palliative care. Although it is well recog- nized that patients in palliative care prefer services that are well organized and coordinated,2 research on patient expe- riences shows that these preferences not being met.3,4,7,54 Further development of palliative care is needed to meet patient preferences for responsiveness by the palliative care organization.
Methodological considerations
Findings based on quantitative and qualitative methods have been criticized as challenging to combine with argu- ments for a transparent process.74 Yet the strength of such synthesis is the comprehensiveness of the knowledge gained.42
The validity and reliability were strengthened by a team of researchers working closely together to ensure rigour in all stages. For example, two researchers (T.S. and I.R. or R.H. or S.H. or B.W.L.) independently selected studies for inclusion, quality assessment and data extraction. All forms that were developed or modi- fied for screening of relevance, quality assessment and data extraction were pilot tested and discussed by the research team. When assessing relevance and quality, it was sometimes difficult to decide whether to include papers, for example, judging whether patients were in a palliative phase of their illness, or whether studies pro- vided enough information. Uncertainties and disagree- ments were discussed by the research team before a decision was taken about inclusion or exclusion. In addi- tion, each step in the synthesis of findings was discussed. This increased the validity and reliability of the selection and the interpretation process37,42 and, therefore, ulti- mately of the results of the review.
There are, however, some limitations. Comprehensive electronic searches were conducted, but due to time limita- tions, experts in the field were not contacted nor were searches for ‘grey literature’ conducted. The quality assessment forms used were based on reliable quality assessment tools.39 However, there may be weaknesses in these rating systems that may have rated the quality of studies too high or too low.
This systematic review highlighted preferences for care for patients in palliative phases of a number of illnesses and a number of settings. The studies were conducted over a period of 31 years, in countries with contrasting health- care systems, and with patients from various ethnic back- grounds, with differences in age, gender, social status, education, religion and life expectancy. Nevertheless, preferences for care seem to have more similarities than differences regarding time and culture. This should con- tribute to transferability of the findings to various patients and palliative care services.
This review captured patients in an advanced phase of their illness, although patients can have palliative needs
even if in an earlier palliative phase.13 It is reasonable to assume that the findings may be transferable to patients in earlier phases of their illness. However, this must be explored further.
Conclusion
We identified four themes that represent patient prefer- ences for a person-centred approach to palliative care. The theme ‘Living a meaningful life’ illustrated what patients strived for. The opportunity to focus on living required the presence of ‘Responsive healthcare personnel’, a ‘Responsive care environment’ and ‘Responsiveness in the organization of palliative care’.
Direction for future research
The volume of research in this field is increasing because 15 of 23 included studies were published over the last 10 years. However, this review revealed a paucity of stud- ies investigating preferences of patients with advanced life-threatening illnesses other than cancer.
In several studies, information on demographic partici- pant data (e.g. length of time in care, education or having young children) was not available. Such information might influence patient preferences. It is important that further research present demographic data and investigates whether preferences differ across subgroups, so as to gain knowledge on the development of services to meet the needs of different groups of patients.
The overall findings should be incorporated into future instruments for measuring quality of palliative care, to ensure that all important aspects of care are measured when evaluating the responsiveness of current palliative care to patient preferences.
Clinical implications
This review argues for responsiveness and sensitivity to patient preferences, in particular their preference for help living a meaningful life, when designing and performing palliative care. The themes may provide useful guidance for clinical practice, with the overall goal of meeting future needs and improving quality in palliative care services.
Acknowledgements
The authors wish to thank Annelie Ekberg-Andersson, librarian at Karlstad University, for her thorough assistance during the search process and the librarians at Hedmark University College for assistance with retrieving full-text articles. The authors also want to thank Palliative Medicine’s editor-in-chief, for allowing an abstract of this review to be presented at the European Association of Palliative Care (EAPC) Eighth World Research Congress.
Sandsdalen et al. 417
Declaration of conflicting interests
The authors declare that there is no conflict of interest.
Funding
This review is part of a doctoral study, financed partly by Hedmark University College and partly by Lovisenberg Diakonale Hospital.
References
1. European Association for Palliative Care (EAPC). White paper on standards and norms for hospice and palliative care in Europe: part 1 – recommendations from the European Association for Palliative Care. Eur J Palliat Care 2009; 16: 278–289.
2. World Health Organization (WHO). The solid facts: pallia- tive care (ed Davies E and IJ Higginson). Geneva: WHO, 2004, 33 pp.
3. Connell T, Fernandez RS, Griffiths R, et al. Perceptions of the impact of health-care services provided to palliative care clients and their carers. Int J Palliat Nurs 2010; 16: 274–284.
4. Werkander Harstäde C and Andershed B. Good palliative care: how and where? The patients’ opinions. J Hosp Palliat Nurs 2004; 6: 27–35.
5. Spichiger E. Patients’ and families’ experience of their rela- tionship with professional healthcare providers in hospital end-of-life care: an interpretive phenomenological study. J Hosp Palliat Nurs 2010; 12: 194–202.
6. Goldschmidt D, Schmidt L, Krasnik A, et al. Expectations to and evaluation of a palliative home-care team as seen by patients and carers. Support Care Cancer 2006; 14: 1232–1240.
7. Murray SA, Boyd K, Kendall M, et al. Dying of lung cancer or cardiac failure: prospective qualitative interview study of patients and their carers in the community. BMJ 2002; 325: 929–932.
8. Ek K, Sahlberg-Blom E, Andershed B, et al. Struggling to retain living space: patients’ stories about living with advanced chronic obstructive pulmonary disease. J Adv Nurs 2011; 67: 1480–1490.
9. Giles S and Miyasaki J. Palliative stage Parkinson’s dis- ease: patient and family experiences of health-care services. Palliat Med 2009; 23: 120–512.
10. Payne S, Burton C, Addington-Hall J, et al. End-of-life issues in acute stroke care: a qualitative study of the experi- ences and preferences of patients and families. Palliat Med 2010; 24: 146–153.
11. Wollin JA, Yates PM and Kristjanson LJ. Supportive and palliative care needs identified by multiple sclerosis patients and their families. Int J Palliat Nurs 2006; 12: 20–26.
12. Spichiger E. Being in the hospital: an interpretive phenom- enological study of terminally ill cancer patients’ experi- ences. Eur J Oncol Nurs 2009; 13: 16–21.
13. Strohbuecker B, Eisenmann Y, Galushko M, et al. Palliative care needs of chronically ill nursing home residents in Germany: focusing on living, not dying. Int J Palliat Nurs 2011; 17: 27–34.
14. Swarbrick P, Grinyer A and Payne S. When a hospice is not a haven. Prog Palliat Care 2011; 19: 22–24.
15. European Association for Palliative Care (EAPC). White paper on standards and norms for hospice and palliative care in Europe: part 2 – recommendations from the European Association for Palliative Care. Eur J Palliat Care 2010; 17: 278–289.
16. Krahn M and Naglie G. The next step in guideline develop- ment: incorporating patient preferences. JAMA 2008; 300: 436–438.
17. Grunfeld E, Urquhart R, Mykhalovskiy E, et al. Toward population-based indicators of quality end-of-life care: test- ing stakeholder agreement. Cancer 2008; 112: 2301–2308.
18. Singer PA, Martin DK and Kelner M. Quality end-of-life care: patients’ perspectives. JAMA 1999; 281: 163–168.
19. Wilde B, Starrin B, Larsson G, et al. Quality of care from a patient perspective: a grounded theory study. Scand J Caring Sci 1993; 7: 113–120.
20. Donabedian A. The definition of quality and approaches to its assessment: explorations in quality assessment and mon- itoring, vol. 1. Ann Arbor, MI: Health Administration Press, 1980, p. XIII, 163 pp.
21. World Health Organization (WHO). Quality of care: a pro- cess for making strategic choices in health systems. Geneva: WHO, 2006, p. VIII, 38 pp.
22. Henoch I, Lövgren M, Wilde-Larsson B, et al. Perception of quality of care: comparison of the views of patients’ with lung cancer and their family members. J Clin Nurs 2012; 21: 585–594.
23. Stajduhar KI, Allan DE, Cohen SR, et al. Preferences for location of death of seriously ill hospitalized patients: per- spectives from Canadian patients and their family caregiv- ers. Palliat Med 2008; 22: 85–88.
24. Steinhauser KE, Christakis NA, Clipp EC, et al. Factors considered important at the end of life by patients, fam- ily, physicians, and other care providers. JAMA 2000; 284: 2476–2482.
25. Bradley SE, Frizelle D and Johnson M. Patients’ psychoso- cial experiences of attending Specialist Palliative Day Care: a systematic review. Palliat Med 2011; 25: 210–228.
26. Rigby J, Payne S and Froggatt K. What evidence is there about the specific environmental needs of older people who are near the end of life and are cared for in hospices or simi- lar institutions? A literature review. Palliat Med 2010; 24: 268–285.
27. Brereton L, Gardiner C, Gott M, et al. The hospital environ- ment for end of life care of older adults and their families: an integrative review. J Adv Nurs 2012; 68: 981–993.
28. Bélanger E, Rodríguez C and Groleau D. Shared decision- making in palliative care: a systematic mixed studies review using narrative synthesis. Palliat Med 2011; 25: 242–261.
29. Higginson IJ and Sen-Gupta GJA. Place of care in advanced cancer: a qualitative systematic literature review of patient preferences. J Palliat Med 2000; 3: 287–300.
30. Ventura AD, Burney S, Brooker J, et al. Home-based palliative care: a systematic literature review of the self- reported unmet needs of patients and carers. Palliat Med. Epub ahead of print 29 November 2013. DOI: 10.1177/ 0269216313511141.
31. Davies E and Higginson IJ. Systematic review of special- ist palliative day-care for adults with cancer. Support Care Cancer 2005; 13: 607–627.
418 Palliative Medicine 29(5)
32. Van Mechelen W, Aertgeerts B, De Ceulaer K, et al. Defining the palliative care patient: a systematic review. Palliat Med 2013; 27: 197–208.
33. Vig EK and Pearlman RA. Quality of life while dying: a qualitative study of terminally ill older men. J Am Geriatr Soc 2003; 51: 1595–1601.
34. World Health Organization (WHO). National cancer con- trol programmes: policies and managerial guidelines. Geneva: WHO, 2002.
35. Polit DF and Beck CT. Nursing research: generating and assessing evidence for nursing practice. Philadelphia, PA: Wolters Kluwer Health, 2012, p. XIV, 802 pp.
36. Sandelowski M, Voils CI and Barroso J. Defining and designing mixed research synthesis studies. Res Sch 2006; 13: 29–44.
37. Higgins JPT and Green S (eds). Cochrane handbook for systematic reviews of interventions (Version 5.1.0, updated March 2011). The Cochrane Collaboration, 2011, http:// handbook.cochrane.org/ (2011, accessed February 2014).
38. Moher D, Liberati A, Tetzlaff J, et al. Preferred report- ing items for systematic reviews and meta-analyses: the PRISMA statement. Ann Intern Med 2009; 151: 264–269.
39. Public Health Resources Unit. Critical Appraisal Skills Programme (CASP): making sense of evidence. 2006, http:// www.casp-uk.net/
40. Nordström G and Wilde-Larsson B. Assessment tool – quan- titative studies (not RCT). Department of Health Science, Faculty of Health, Science and Technology, Karlstad University, 2006 (in Swedish) (unpublished).
41. Nordström G and Wilde-Larsson B. Assessment tool – qual- itative studies. Department of Health Science, Faculty of Health, Science and Technology, Karlstad University, 2006 (in Swedish) (unpublished).
42. Whittemore R and Knafl K. The integrative review: updated methodology. J Adv Nurs 2005; 52: 546–553.
43. Arablaster G, Brooks D, Hudson R, et al. Terminally ill patients’ expectations of nurses. Aust J Adv Nurs 1990; 7: 34–43.
44. Ben Natan M, Garfinkel D and Shachar I. End-of-life needs as perceived by terminally ill older adult patients, family and staff. Eur J Oncol Nurs 2010; 14: 299–303.
45. Cawley D, Waterman D, Roberts D, et al. A qualitative study exploring perceptions and experiences of patients and clinicians of Palliative Medicine Outpatient Clinics in dif- ferent settings. Palliat Med 2011; 25: 52–61.
46. Dale MJ and Johnston B. An exploration of the concerns of patients with inoperable lung cancer. Int J Palliat Nurs 2011; 17: 285–290.
47. De Vogel-Voogt E, Van der Heide A, Van Leeuwen AF, et al. Patient evaluation of end-of-life care. Palliat Med 2007; 21: 243–248.
48. Dzul-Church V, Cimino JW, Adler SR, et al. ‘I’m sitting here by myself …’: experiences of patients with serious ill- ness at an urban public hospital. J Palliat Med 2010; 13: 695–701.
49. Gardner DS and Kramer BJ. End-of-life concerns and care preferences: congruence among terminally ill elders and their family caregivers. Omega 2009; 60: 273–297.
50. Gates MF, Lackey NR and White MR. Needs of hospice and clinic patients with cancer. Cancer Pract 1995; 3: 226–232.
51. Goodwin DM, Higginson IJ, Myers K, et al. What is pal- liative day care? A patient perspective of five UK services. Support Care Cancer 2002; 10: 556–662.
52. Grobe ME, Ahman D and Ilstrup DM. Needs assessment for advanced cancer patients and their families. Oncol Nurs Forum 1982; 9: 26–30.
53. Hanratty B, Addington-Hall J, Arthur A, et al. What is dif- ferent about living alone with cancer in older age? A quali- tative study of experiences and preferences for care. BMC Fam Pract 2013; 14: 22–29.
54. Heyland DK, Cook DJ, Rocker GM, et al. Defining priori- ties for improving end-of-life care in Canada. CMAJ 2010; 182: E747–E752.
55. Heyland DK, Dodek P, Rocker G, et al. What matters most in end-of-life care: perceptions of seriously ill patients and their family members. CMAJ 2006; 174: 627–633.
56. Rocker GM, Dodek PM and Heyland DK. Toward optimal end-of-life care for patients with advanced chronic obstruc- tive pulmonary disease: insights from a multicentre study. Can Respir J 2008; 15: 249–254.
57. Strachan PH, Ross H, Rocker GM, et al. Mind the gap: opportunities for improving end-of-life care for patients with advanced heart failure. Can J Cardiol 2009; 25: 635–640.
58. Hopkinson JB and Hallett CE. Patients’ perceptions of hos- pice day care: a phenomenological study. Int J Nurs Stud 2001; 38: 117–125.
59. Janssen AL and MacLeod RD. What does care mean? Perceptions of people approaching the end of life. Palliat Support Care 2010; 8: 433–440.
60. Johnston B and Smith LN. Nurses’ and patients’ percep- tions of expert palliative nursing care. J Adv Nurs 2006; 54: 700–709.
61. Kernohan WG, Hasson F, Hutchinson P, et al. Patient satis- faction with hospice day care. Support Care Cancer 2006; 14: 462–468.
62. Laakkonen ML, Pitkala KH and Strandberg TE. Terminally ill elderly patient’s experiences, attitudes, and needs: a qual- itative study. Omega 2004; 49: 117–129.
63. McDonnell MM. Patients’ perceptions of their care at our Lady’s Hospice, Dublin. Palliat Med 1989; 3: 47–53.
64. Miccinesi G, Bianchi E, Brunelli C, et al. End-of-life prefer- ences in advanced cancer patients willing to discuss issues surrounding their terminal condition. Eur J Cancer Care 2012; 21: 623–633.
65. Tanaka A, Iwamoto T, Kaneyasu H, et al. Thoughts and feelings of in-patients with advanced terminal cancer: implications for terminal care improvement. Nurs Health Sci 1999; 1: 189–193.
66. Torke AM, Garas NS, Sexson W, et al. Medical care at the end of life: views of African American patients in an urban hospital. J Palliat Med 2005; 8: 593–602.
67. Yeung EWF, French P and Leung AOS. The impact of hos- pice inpatient care on the quality of life of patients termi- nally ill with cancer. Cancer Nurs 1999; 22: 350–357.
68. Kaasa S and Loge JH. Quality of life in palliative care: prin- ciples and practice. Palliat Med 2003; 17: 11–20.
Sandsdalen et al. 419
69. Ternestedt B-M, Andershed B, Eriksson M, et al. A good death: development of a nursing model of care. J Hosp Palliat Nurs 2002; 4: 153–160.
70. Hermansson A and Ternestedt B. What do we know about the dying patient? Awareness as a means to improve pallia- tive care. Med Law 2000; 19: 335–344.
71. Kleinman A. The illness narratives: suffering, healing, and the human condition. New York: Basic Books, Inc., 1988.
72. Brogaard T, Neergaard MA, Sokolowski I, et al. Congruence between preferred and actual place of care and death among Danish cancer patients. Palliat Med 2013; 27: 155–164.
73. Aoun S, Kristjanson LJ, Currow D, et al. Terminally-ill people living alone without a caregiver: an Australian national scoping study of palliative care needs. Palliat Med 2007; 21: 29–34.
74. Sandelowski M, Voils CI and Barroso J. Comparability work and the management of difference in research synthe- sis studies. Soc Sci Med 2007; 64: 236–247.
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