www.sciedu.ca/jha Jou nal o Hospi al Adminis a ion 2015, Vol. 4, No. 5
ORIGINAL ARTICLE
Compa a i e s udy o pe cep ions o amily membe s
o he end-o -li e ca e in esiden ial ca e acili ies and
hospi als in Tampe e, Finland
Aino Lehmus1, Lau i Seinelä ∗1,2,3,4, Jaakko Val anne1,2,4,5
1School o Medicine, Uni e si y o Tampe e, Tampe e, Finland
2Pu chase o he P omo ion o senio ci izens wel a e, Ci y o Tampe e, Tampe e, Finland
3Pi kanmaan e ikoislääkä ipal elu Oy, Tampe e, Finland
4Ge on ology Resea ch Cen e (GEREC), Uni e si ies o Tampe e and Jy äskylä, Tampe e and Jy äskylä, Finland
5Tampe e Uni e si y Hospi al, Tampe e, Finland
Recei ed: May 21, 2015 Accep ed: July 9, 2015 Online Published: July 23, 2015
DOI: 10.5430/jha. 4n5p84 URL: h p://dx.doi.o g/10.5430/jha. 4n5p84
ABSTRACT
Objec i e:
Cu en end in long- e m ca e (LTC) is o b ing he ca e o he place whe e he pe son li es and o a oid unnecessa y
ansi ions. The pu pose o he s udy was o ind ou amily membe s’ opinions abou he quali y o end-o -li e ca e in LTC
compa ed o ca e in hospi als.
Me hods:
A pos al ques ionnai e was sen o he amily membe s o 168 esiden s, who had died du ing he yea 2012 in LTC in
Tampe e, sou he n Finland.
Resul s:
A o al o 97 amily membe s (58%) e u ned he ques ionnai e. Eigh y- wo pe cen o he esiden s su e ed om
demen ia. Family membe s seemed o be mo e sa is ied wi h he ca e i he esiden had died in LTC. Family membe s epo ed
ha esiden s who had died in LTC we e mo e o en kep clean (80% s. 55%; p= .020), hei digni y was main ained mo e o en
(84% s. 56%; p= .021) and hei wishes conside ing hei ca e we e acknowledged be e (82% s. 50%; p= .033) compa ed o
he esiden s ha died in a hospi al. Residen s who died in LTC su e ed also less om agi a ion (32% s. 60%; p= .047). The
end in he p e alence o o he signs and symp oms and he p e alence o non-pallia i e in e en ions was lowe , i he esiden
had died in LTC.
Conclusions:
Family membe s pe cei ed he quali y o end-o -li e ca e gi en in esiden ial ca e acili ies o be a leas as good,
o , in some cases, be e han he quali y o end-o -li e ca e gi en in a hospi al.
Key Wo ds: End-o -li e ca e, Family membe s, Pe cep ions, Long- e m ca e acili ies, Hospi als, Quali y o ca e
1. INTRODUCTION
Only a ew decades ago end-o -li e ca e in Finland used o
ake place in hospi als. While he s uc u e o heal h se ices
has been changing in Finland in he 21
s
cen u y, he place
whe e he end-o -li e ca e is gi en has slowly shi ed owa ds
long- e m ca e (LTC) acili ies. The numbe o clien s in
LTC has inc eased abou 41% in he 21
s
cen u y
[1]
and he
numbe o clien s diagnosed wi h demen ia has almos dou-
bled be ween yea s 2001 and 2009.
[2]
Today, he aim o LTC
is no o ans e he pe son, bu o b ing he ca e o he place
∗Co espondence:
Lau i Seinelä; Email: [email p o ec ed]; Add ess: Jaakko Val anne/Lau i Seinelä, Lääke ie een yksikkö, Lääkä inka u 1, 33014
Tampe een yliopis o, Finland.
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whe e he pe son li es. Ye , he e is only a li le esea ch on
he quali y o end-o -li e ca e in LTC se ings.
Despi e hese imp o emen s mos Finnish demen ia pa ien s
s ill die in hospi als o heal h-ca e cen e wa ds (69%), while
25% and 7% espec i ely die in LTC acili ies and home.
[3]
In he USA, abou 66% o demen ia pa ien s die in LTC
acili ies.[4]
T ansi ions a e common among he ca e acili ies’ esi-
den s
[5]
al hough hey in e e e wi h he con inuum o ca e,
which again may lead o unnecessa y ea men s and compli-
ca ions, pa icula ly in pa ien s wi h se e e demen ia.
[3,6,7]
The numbe o ansi ions inc eases wi h he p oximi y o
dea h.
[8]
Decisions no o hospi alize a esiden a e made
only when he p oximi y o dea h is ob ious.
[6]
In Finland
esiden s diagnosed wi h demen ia ha e sligh ly ewe ansi-
ions han he esiden s wi hou demen ia.
[8]
T ansi ions a e
associa ed wi h conside able indi idual bu den and a e a ely
necessa y, as he main goal in end-o -li e ca e should be
pallia ion acco ding o bo h amily membe s and nu ses.
[6,9]
Ca e acili y esiden s’ heal h and he abili y o unc ion o en
de e io a e slowly, and hei dying p ocess akes long, e en
yea s.
[10]
Tha is why he sha e o pallia i e ca e should be
al eady inc eased be o e dea h is imminen . Howe e , people
wi h ad anced demen ia a e no o en ecognized as ha ing a
e minal condi ion and do no ecei e ca e ha p omo es pal-
lia ion a he end o li e. Ins ead hey expe ience bu densome
in e en ions.
[11]
One s udy showed ha du ing he 3 las
mon hs o li e 30% o he esiden s wi h ad anced demen ia
ecei ed pa en e al he apy, 12% we e hospi alized and 7%
unde wen ube eeding.[9]
The aim o end-o -li e ca e should be he bes possible qual-
i y o li e. The Ame ican Medical Associa ion
[12]
has lis ed
igh s a he end o li e and hese include he de ec ion and
managemen o pain, au onomy, digni y, igh o a oid bu -
densome and wo hless in e en ions and igh o ecei e
in o ma ion abou one’s heal h. E e y pa ien should ha e
he same igh s ega dless o cogni i e s a us. The mos com-
mon symp oms in he end o li e a e exhaus ion, weigh loss,
pain, dyspnea, cons ipa ion, anxie y, and dep ession. Pain
o a dying, elde ly pa ien is o en unde ea ed.
[13,14]
Pain
can be also a eason o es lessness and agi a ion among
demen ia pa ien s.
[15,16]
Many people wi h demen ia su e
om dis essing symp oms such as dyspnea (46.0%), pain
(39.1%) and agi a ion (53.6%). The p opo ion o people
su e ing om dyspnea and pain inc eases as he end o li e
app oaches.[9]
The aim o his s udy was o in es iga e whe he he quali y
o end-o -li e ca e gi en in LTC acili ies is a leas as good
as he quali y o end-o -li e ca e gi en in hospi als, based on
amily membe s’ assessmen .
2. METHODS
In 2012, he e we e 48 LTC acili ies in Tampe e a ea (pop-
ula ion base ca. 220,000 inhabi an s). Each o he LTC
acili ies had 6-60 esiden s and o e all hey p o ided se -
ices o 690 people. In he same yea , he e we e 168 dea hs
eco ded. Twen y- h ee acili ies p o ided da a on a leas
one dea h (n = 1-16).
In o ma ion o his s udy was ob ained by sending ques ion-
nai e o he amily membe s o he deceased esiden s. The
ques ionnai e was sen a he end o July 2013; he ime be-
ween he esiden ’s dea h and comple ing he ques ionnai e
was om 7 o 19 mon hs. The ques ionnai e was sen o he
amily membe , who was named in he pa ien ’s medical iles.
Besides he ac ual ques ions i included backg ound in o ma-
ion o he esponden : he yea o bi h, gende , ela ionship
o he esiden , and he equency o isi s du ing he las
mon h o esiden ’s li e.
Residen da a collec ed om he medical iles included da e
o bi h and dea h, gende , and place o esidence and dea h.
Addi ionally ano he ques ionnai e was sen o he esiden ial
ca e acili y and nu ses we e asked backg ound in o ma ion
o he esiden ( he p esence o demen ia, he leng h o he
s ay in he acili y, and ansi ions du ing he las mon h o
esiden ’s li e).
Va iables o he ques ionnai e we e selec ed so ha hey
we e hough o ep esen impo an ea u es o end-o -li e
ca e based on knowledge o he li e a u e and clinical ex-
pe ience.
[11,17–20]
Va iables we e o ganized in o ou main
ca ego ies. The i s ca ego y ocused on he occu ence o
bu densome in e en ions and ad ance ca e planning. Bu -
densome in e en ions included ansi ions, in a enous he -
apy o ube eeding and labo a o y es s, du ing he las mon h
o esiden ’s li e. The second ca ego y included ques ions
abou he p e alence o bo h physical and emo ional signs
and symp oms du ing he las mon h o he esiden ’s li e.
The hi d ca ego y conce ned he well-being o he esiden .
In he ou h ca ego y amily membe s we e asked se e al
ques ions abou hei sa is ac ion wi h ca e. The inal d a
was ci cula ed among ge ia icians wo king in LTC, and
edi ed based on he commen s. The su ey was app o ed by
he ci y o Tampe e in July 2013.
Findings we e s a is ically analysed wi h SPSS 21.0. De-
sc ip i e s a is ics we e conduc ed o all a iables using e-
quencies o ca ego ical a iables and means wi h s anda d
de ia ions o con inuous a iables. The answe s o amily
membe s we e di ided in o wo ca ego ies depending on
Published by Sciedu P ess 85
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he place o dea h o he esiden (LTC acili y s. hospi al)
and hese subg oups we e compa ed. Chi squa e es s we e
used o compa e he answe s on he basis o he place o
dea h. I he chi squa e c i e ia we e no ul illed, Fishe s
exac es was used ins ead. The c i ical alue o s a is ical
signi icance was p< .05.
3. RESULTS
A o al o 97 amily membe s (58%) e u ned he ques ion-
nai e. Residen s whose amily membe s did no e u n he
ques ionnai e did no di e signi ican ly in espec o age
o gende om hose who we e used o he s udy. Nu ses
p o ided in o ma ion abou 132 esiden s ou o which 80
esponses we e ela ed o he same esiden s amily membe s
had p o ided da a abou . The in o ma ion abou he p esence
o demen ia, he leng h o s ay in he acili y, and he numbe
o ansi ions was epo ed o only hese 80 esiden s.
The mean age o he esiden s, whose amily membe e-
u ned he ques ionnai e, was 88
±
6 yea s. Ou o hese
esiden s, 82% we e emale and 82% su e ed om demen ia.
They we e li ing in 21 di e en LTC acili ies. The e we e
1-10 dea hs pe acili y.
Mos (80%) o he amily membe s we e esiden s’ imme-
dia e amily (child o pa ne ). The emaining we e o he
ela i es (18%) and legal ep esen a i es (2%). Family mem-
be s’ mean age was 65
±
10 yea s, and 71% we e emale.
Nine y-one pe cen o he amily membe s isi ed he esi-
den a leas once a week du ing he las mon h o esiden ’s
li e.
A o al o 76 (78%) o he esiden s died in a ca e acili y
and 21 (22%) in a hospi al. 29% o he esiden s who died in
hospi al had s ayed less han a yea in he same esiden ial
ca e acili y whe eas only 16% o he esiden s who died in
he acili y had li ed he e less han a yea (p= .291). Resi-
den s who died in LTC o in hospi al did no di e in e ms
o age, gende , o p esence o demen ia.
Acco ding o amily membe s’ e alua ion, he e was a lowe
p e alence o mos signs and symp oms when he esiden
died in LTC compa ed o he si ua ion whe e he/she died in a
hospi al (see Table 1). Residen s who died in a hospi al su -
e ed mo e om agi a ion han hose who died in LTC. The e
was a clea end ha o he physical (e.g. pain, dyspnea) and
emo ional (e.g. ea , anxie y) symp oms we e mo e equen
when he esiden had died in a hospi al bu he esul s we e
no s a is ically signi ican .
Table 1. Family membe s’ pe spec i es o symp oms and
signs depending on he place o dea h (n = 97)
No e. N* = numbe o he amily membe s who answe ed he speci ic ques ion; C = Ca e
acili y; H = Hospi al
N*
O en (Mo e han
once a week), % p- alue
C H
Pain 75 68 88 .208
Dyspnea 74 53 65 .379
Swallowing p oblems 73 52 60 .567
Hype sali a ion 70 49 53 .771
P essu e ulce s 80 14 7 .678
Dep ession 56 33 55 .298
Fea 57 30 50 .209
Anxie y 63 35 50 .298
Agi a ion 74 32 60 .047
Resis ance o ca e 67 16 17 1.000
The well-being o he esiden , as epo ed by a amily mem-
be , a ied signi ican ly depending on he place o dea h as
shown in Table 2. Residen s ha died in he ca e acili y we e
mo e o en kep clean, hei digni y was main ained mo e
o en and hei wishes in espec o hei ca e we e mo e
o en acknowledged compa ed o he esiden s ha died in a
hospi al.
Table 2. Family membe s’ pe spec i es o well-being o he esiden depending on he place o dea h (n = 97)
N* Ag ee (%) p- alue
C H
Residen was kep clean. 96 80 55 .020
Residen ’s digni y was main ained. 93 84 56 .021
Residen s eligious needs we e aken in o accoun (e.g. he/she could see a p ies i wan ed). 52 89 83 .540
Residen had as much in o ma ion as he/she wan ed abou his/he illness. 68 84 62 .122
Residen pa icipa ed as much as he/she wan ed in he decisions abou his/he ca e. 67 72 64 .744
I esiden had exp essed his/he hopes ega ding he end-o -li e ca e be o ehand, hese we e
honou ed. 63 82 50 .033
Residen spen as much ime as he/she wan ed wi h his/he amily. 89 97 89 .181
Residen and his/he amily had p i acy. 92 99 89 .107
No e. N* = numbe o he amily membe s who answe ed he speci ic ques ion; C = Ca e acili y; H = Hospi al
86 ISSN 1927-6990 E-ISSN 1927-7008
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Also he sa is ac ion wi h ca e a ied depending on he place
o dea h, al hough he di e ence was no s a is ically signi -
ican (see Table 3). Mo e amily membe s ag eed wi h he
s a emen s conce ning hei sa is ac ion wi h ca e when he
esiden died in he ca e acili y compa ed o he si ua ion
whe e he esiden died in a hospi al.
Table 3.
Family membe s’ sa is ac ion wi h ca e depending
on he place o dea h (n = 97)
N* Ag ee (%) p- alue
C H
1. I el ully in ol ed in decision
making. 93 81 72 .515
2. I go enough in o ma ion o
esiden ’s condi ion. 96 78 65 .246
3. The heal h ca e eam was
sensi i e o my needs and eelings. 93 80 67 .227
4. All measu es we e aken o keep
he esiden com o able. 95 73 60 .245
5. I always knew which doc o o
nu se was in cha ge o he
esiden ’s ca e.
95 51 42 .473
No e. N* = numbe o he amily membe s who answe ed he speci ic ques ion; C = Ca e
acili y; H = Hospi al
The esiden s expe ienced se e al non-pallia i e in e en-
ions a hei end o li e. Acco ding o amily membe s’
epo ing, 26% o he esiden s ecei ed in a enous he apy
o had a eeding ube du ing hei las mon h o li e and 60%
we e subjec ed o labo a o y es s. When compa ing esi-
den s acco ding o hei place o dea h, all he in e en ions
we e mo e common i he pe son died in a hospi al: in a-
enous he apy o ube eeding (14% s. 70%; p< .001) and
labo a o y es s (51% s. 95%; p= .002).
Acco ding o nu ses’ epo s, he e was no di e ence in he
occu ence o ansi ions (las ing a leas one nigh ) du ing
he las mon h o li e be ween he esiden s who we e diag-
nosed wi h demen ia and hose who we e cogni i ely in ac
(29% s. 36%; p= .323). The e also was no di e ence
be ween he place o dea h depending on he cogni i e s a us:
78% o he cogni i ely impai ed and 79% o he cogni i ely
in ac esiden s died a he ca e acili y (p= 1.000).
4. DISCUSSION
This s udy in es iga ed he pe spec i es o amily membe s
ela ed o end-o -li e ca e in a LTC en i onmen . To he bes
o ou knowledge, i is he i s o i s kind in Finland. The
s udy popula ion was ex ensi e including all hose who died
wi hin he yea 2012 in he esiden ial ca e acili ies in he
Tampe e a ea. The esponse a e was compa able wi h o he
simila s udies (58%)
[21]
and can be conside ed sa is ac o y
gi en he opic o he s udy and he delay be ween dea h and
adminis a ion o he ques ionnai e.
The well-being o he esiden s, as epo ed by amily mem-
be s, a ied signi ican ly depending on he place o dea h in
a o o he ca e acili ies. I he esiden died in he ca e a-
cili y, amily membe s we e mo e inclined o ag ee wi h he
s a emen s ha he esiden was kep clean, his/he digni y
was main ained, and his/he hopes ega ding he end-o -li e
ca e we e hono ed. Also he p e alence o non-pallia i e
in e en ions was lowe o esiden s who died in he acili y.
Fu he mo e he esiden s who died in he ca e acili y su -
e ed less om agi a ion. Ou s udy showed ha he e was
a clea end ha esiden s who died in ca e acili ies also
su e ed less om o he physical and emo ional symp oms
bu he esul s we e no s a is ically signi ican . Mo eo e ,
amily membe s ended o be mo e sa is ied wi h he ca e
when he esiden died in he ca e acili y. Al oge he , ou
esul s indica e ha mos amily membe s we e sa is ied wi h
he end-o -li e ca e in esiden ial ca e acili ies.
Ou esul s ein o ce he esul s om he s udy made by
Voh a e al.
[22]
which s a ed ha he place o dea h was sig-
ni ican ly associa ed wi h sa is ac ion, amily membe s being
mo e sa is ied wi h end-o -li e ca e when hei amily mem-
be died in LTC acili y as opposed o he hospi al se ing.
Lack o su icien communica ion was obse ed h oughou
he analysis. O e a i h (22%) o he amily membe s whose
nex o kin died in he ca e acili y hough hey did no ge
enough in o ma ion on he esiden ’s condi ion. Only hal
(51%) o he amily membe s knew he doc o o nu se in
cha ge o he esiden ’s ca e. The low pe cen age was s ill
ob ained e en hough in Tampe e e e y esiden ial ca e clien
and hei amily membe s we e asked o pa icipa e in a mee -
ing wi h heal h ca e p o essionals a e he esiden mo ed o
he acili y. The high u no e o he wo ke s and he ai ly
la ge numbe o subs i u es in some acili ies p obably in lu-
enced he answe s abou knowing he nu se in cha ge. The
high u no e a es ha e a nega i e impac on he esiden s,
especially i hey ha e demen ia, and can esul in beha io al
igge s.
[23]
Be e and con inual communica ion is he e o e
needed o imp o e he quali y o ca e.
I is no ewo hy ha , acco ding o amily membe s’ obse a-
ion, he p e alence o pain, dyspnea, and swallowing p ob-
lems among o he dis essing symp oms was conside ably
high in ou s udy popula ion. These symp oms a e po en ially
ea able and mo e a en ion should be d awn o hem. I is
p obable ha esiden s who we e hospi alized p esen ed a
highe symp om bu den al eady be o e he hospi aliza ion,
which would explain he highe p e alence o mos signs and
symp oms when he esiden died in a hospi al. Howe e ,
wi h ou s udy design i is no possible o say i he di e ence
was due o ha o o he ac o s.
Published by Sciedu P ess 87
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Ou da a showed ha he e was a signi ican di e ence in
he numbe o non-pallia i e in e en ions du ing he las
mon h o li e depending on he place o dea h. This esul
con i ms he p e iously known ac ha hospi alized pa ien s
equen ly expe ience uncom o able in e en ions.
[6]
I is
p obable ha he esiden s who we e hospi alized we e p e-
iously in be e condi ion and so had a be e p ognosis and
he e o e ecei ed mo e in ensi e ca e.
In some ques ions he esponse a es we e small. This migh
be due o p oblems in e alua ing he ques ion, such as he
p e alence o emo ional signs and symp oms. Asking abou
eligious needs migh ha e been conside ed oo p i a e in
Finnish cul u al en i onmen . I is also p obable ha am-
ily membe s did no answe a ques ion i i did no ha e a
pe sonal signi icance o hem o hey hough i was unim-
po an o he esiden . On he o he hand, hose who did
answe , mos likely ound he ques ion impo an .
This s udy has se e al limi a ions. As is ue o any s udy,
he esul s apply o a pa icula se ing, and in his case,
he Finnish en i onmen . Howe e , he esul s suppo he
indings om o he coun ies.
[22]
E en hough he s udy pop-
ula ion was ex ensi e, some subg oups became qui e small in
he analysis. The e was a delay om 7 o 19 mon hs be ween
he ime o dea h and he ime he da a we e collec ed. The
delay may ha e had an impac on how well he esponden s
emembe ed all he scena ios. Some backg ound in o ma-
ion was p o ided by nu ses and because o he delay he
eliabili y o he answe s may ha e su e ed. Selec ion bias
is also possible: i is sugges ed ha amilies may be mo e
willing o pa icipa e in esea ch i he eamwo k has been
ha monious.
[24]
Ano he limi a ion o ou s udy is ha he
eason o hospi alizing pa ien s was no known.
The numbe o people wi h demen ia and he need o esi-
den ial ca e ha e been on he inc ease and will con inue o
ise. Many indi iduals wi h ad anced demen ia ecei e hei
end-o -li e ca e in esiden ial ca e acili ies, which is he ob-
jec i e o LTC in Tampe e. The e o e we ound i impo an
o e alua e he quali y o he ca e in his en i onmen .
In conclusion, amily membe s obse ed ha he quali y o
ca e was be e when he end-o -li e ca e was ecei ed in
a esiden ial ca e acili y compa ed o ca e ecei ed in a
hospi al. Decisions ela ed o hospi aliza ion o ansi ion
should be ca e ully planned, and i possible, also discussed
in ad ance. Ye i seems ha when dying o a ch onic, long-
las ing disease, i is be e o end one’s days in a amilia
en i onmen .
ACKNOWLEDGEMENTS
We exp ess ou g a i ude o M.D. Ph.D. and ellow esea che
Esa Jämsen who has con ibu ed o he a icle by eading i
h ough be o e submi ing and gi ing aluable commen s.
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