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University of Southern California Dissertations and Theses
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My Life, My Wishes, a death education program for community-dwelling Chinese older adults: development and pilot testing
(USC Thesis Other)
My Life, My Wishes, a death education program for community-dwelling Chinese older adults: development and pilot testing
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M a ndong L i u
M Y L I F E , M Y W I S H E S , A D E A T H E D U C A T I O N P R O G R A M F O R C O M M U N I T Y -
D W E L L I N G C H I N E S E O L D E R A D U L T S : D E V E L O P M E N T A N D P I L O T T E S T I N G
by
M a ndong L i u
A D i s s e r t a t i on P r e s e nt e d t o t he
F A C U L T Y O F T H E U S C G R A D U A T E S C H O O L
U N I V E R S I T Y O F S O U T H E R N C A L I F O R N I A
I n P a r t i a l F ul f i l l m e nt of t he
R e qui r e m e nt s f or t he D e gr e e
D O C T O R O F P H I L O S O P H Y
( S O C I A L W O R K )
D e c e m be r 2021
i i
A C K N O W L E D G E M E N T S
M y de e pe s t t ha nks g o t o m y s upe r vi s or , D r . I r i s C hi . S he ha s de vot e d he r va l ua bl e t i m e
f r om he r he c t i c t e a c hi ng a nd r e s e a r c h dut i e s t o g ui de m y s t udy . H e r i ns i g ht f ul c om m e nt s a r e
a l w a y s e nl i g ht e ni ng , a nd he r w or ds a r e e nc our a gi ng, e ve n dur i ng m y m os t di f f i c ul t t i m e s . S he
of f e r e d m e m ul t i pl e oppor t uni t i e s t o c onne c t w i t h r e s e a r c he r s i n C hi na t ha t br oa de ne d m y
hor i z ons , he l pe d m e c om pl e t e t he di s s e r t a t i on s t udy , a nd e ve nt ua l l y f ound a n i de a l a c a de m i c j ob.
I a m g r e a t l y i nde bt e d t o he r s upe r vi s i on w hi c h I be l i e ve w i l l c ont i nue t o f ur t he r m y a l l - r ound
de ve l opm e nt .
M a ny t ha nks a l s o g o t o D r s . Y ur i J a ng a nd S us a n E ngu í da nos f or t he i r he l pf ul
s ug ge s t i ons dur i ng t he pr e pa r a t i on a nd de f e ndi ng s t a ge s of t hi s s t udy , a nd D r . Y i ng W a ng i n
L a nz hou U ni ve r s i t y f or he l pi ng m e r e c r ui t pa r t i c i pa nt s a nd i nvi t i ng m e t o a t t e nd m a ny s oc i a l
w or k a c t i vi t i e s i n C hi na t o he l p m e g e t f a m i l i a r w i t h t he s i t ua t i on. I w or ke d w i t h t he s e w i s e
pe opl e on di f f e r e nt pr oj e c t s dur i ng m y P hD s t udy , a nd I l e a r ne d s o m uc h f r om e a c h of t he m .
I a m i nde bt e d t o a l l w ho pa r t i c i pa t e d i n t hi s s t udy f or t he i r t i m e a nd s ha r i ng. R e g a r di ng
e x pe r t i nt e r vi e w e e s , I r e a l l y a ppr e c i a t e t he de t a i l s t he y s ha r e d w i t h m e a bout a r e a s m y pr ogr a m
c a n i m pr ove upon, a nd r e ga r di ng ol de r a dul t pa r t i c i pa nt s , t he i r l i f e s t or i e s a nd vi e w s g a ve m e a
va l ua bl e l e s s on on l i f e . I a l s o w a nt t o t ha nk t he B e i j i ng L i vi ng W i l l P r om ot i on A s s oc i a t i on f or
t he i r a s s i s t a nc e i n r e c r ui t i ng ol de r a dul t i nt e r vi e w e e s , a nd a l l r e s e a r c h a s s i s t a nt s i n L a nz hou
U ni ve r s i t y f or t he i r a s s i s t a nc e i n da t a c ol l e c t i on.
T he r e a r e ha r dl y w or ds t o e x pr e s s m y s i nc e r e g r a t i t ude t o a l l t he s e pe opl e . W i t hout t he i r
g e nui ne s uppor t , I c oul d ne ve r ha ve br ought t hi s di s s e r t a t i on t o c om pl e t i on.
i i i
T A B L E O F C O N T E N T S
A c know l e dge m e nt s …………………………………………………………………………... i i
L i s t of T a bl e s …………………………………………………………………………………. v
L i s t of F i gur e s ………………………………………………………………………………… vi
A bbr e vi a t i ons ………………………………………………………………………………… vi i
A bs t r a c t …………………………………………………………………………… ...………... vi i i
C ha pt e r 1: I n t r oduc t i on ……………………………………………………………………… .. 1
A N e e d f or D e a t h E duc a t i on f or C hi ne s e O l de r A dul t s ................................ 1
C ur r e nt D e a t h E duc a t i on P r og r a m s a m ong C hi ne s e O l de r A dul t s ............... 3
T he or i e s on D e a t h A nx i e t y . ........................................................................... 5
D e ve l opm e nt of “ M y L i f e , M y W i s he s ” D e a t h E duc a t i on P r og r a m ............. 7
C ha pt e r 2: D e ve l opm e nt a nd F or m a t i ve E va l ua t i on of a D e a t h E duc a t i on I n t e r ve nt i on f or
C hi ne s e O l de r A dul t s ………………………………………………………… ........ 13
I nt r oduc t i on................................................................................................... 13
M e t hods ......................................................................................................... 14
R e s ul t s ........................................................................................................... 19
D i s c us s i on...................................................................................................... 30
C ha pt e r 3: D e l i ve r i ng a D e a t h E duc a t i on P r og r a m a m ong C om m uni t y - D w e l l i ng C hi ne s e
O l de r A dul t s : A P i l ot Q ua s i - E x pe r i m e nt a l S t udy ..................................................... 35
I nt r oduc t i on................................................................................................... 35
M e t hods ......................................................................................................... 38
R e s ul t s ........................................................................................................... 46
D i s c us s i on...................................................................................................... 52
C ha pt e r 4: T he A ppl i c a t i on of C hi ne s e G o W i s h C a r ds G a m e a m ong C om m uni t y - D w e l l i ng
C hi ne s e O l de r A dul t s ………………………………………………........................ 57
I nt r oduc t i on................................................................................................... 57
M e t hods ......................................................................................................... 58
R e s ul t s ........................................................................................................... 60
D i s c us s i on...................................................................................................... 65
C ha pt e r 5: C onc l us i on ………………………………………………………………………... 71
R e f e r e nc e s ………………………………………………………………………………......... 77
A ppe ndi c e s ................................................................................................................................ 89
A ppe ndi x I : S t a g e I A I n t e r vi e w G ui de .......................................................... 89
A ppe ndi x I I : S t a g e I A P r og r a m O ut l i ne ........................................................ 91
i v
A ppe ndi x I I I : S t a g e I B P a r t i c i pa nt S c r e e ni ng F or m ..................................... 92
A ppe ndi x I V : T 0 A s s e s s m e nt Q ue s t i ons ....................................................... 95
A ppe ndi x V : T 1 A s s e s s m e nt Q ue s t i ons ......................................................... 102
v
L I S T O F T A B L E S
T a bl e 1 “ M y L i f e , M y W i s he s ” P r ogr a m O ut l i ne ( O r i gi na l ) 14
T a bl e 2 B a c kgr ound of I nt e r vi e w e e s 20
T a bl e 3 F e e dba c k f or D e a t h E duc a t i on P r og r a m 29
T a bl e 4 “ M y L i f e , M y W i s he s ” P r ogr a m O ut l i ne ( R e vi s e d) 40
T a bl e 5 P a r t i c i pa nt C ha r a c t e r i s t i c s by G r oup a t B a s e l i ne 48
T a bl e 6 I T T D e s c r i pt i ve S t a t i s t i c s of I G a nd C G G r oups of D e a t h-
R e l a t e d K now l e dge a nd A t t i t ude s
50
T a bl e 7 P P D e s c r i pt i ve S t a t i s t i c s of I G a nd C G G r oups of D e a t h- R e l a t e d
K now l e dge a nd A t t i t ude s
51
vi
L I S T O F F I G U R E S
F i gur e 1 F l ow di a gr a m of t he s t udy pr oc e s s a nd s a m pl e s 48
vi i
A B B R E V I A T I O N S
A C P A dva nc e c a r e pl a nni ng
A D A dva nc e di r e c t i ve
C G C ont r ol g r oup
D A Q D e a t h A nxi e t y Q ue s t i onna i r e
E O L E nd of l i f e
H C P H e a l t hc a r e pr of e s s i ona l s
I G I n t e r ve nt i on g r oup
I T T I n t e nt i on- t o- t r e a t
P I P r i nc i pa l i nve s t i g a t or
P P P e r pr ot oc ol
Q O D D Q ua l i t y of D y i ng a nd D e a t h Q ue s t i onna i r e
Q O L Q ua l i t y of l i f e
vi i i
A B S T R A C T
B ac k gr ou n d
W e l i ve i n a de a t h- de ny i ng s oc i e t y , but not pl a nni ng f or de a t h a nd dy i ng i n a dva nc e
m i g ht l e a ve i ndi vi dua l s a nd t he f a m i l y w i t h unf i ni s he d bus i ne s s a nd r e gr e t s . C hi ne s e s oc i e t i e s
a r e r a pi dl y a gi ng, a nd i t ha s be e n i nc r e a s i ng l y s i g ni f i c a nt t o pr ovi de de a t h e duc a t i on t o e nl i g ht e n
t he publ i c on t he i m por t a nc e of m a ki ng pl a ns a nd t he i nf or m a t i on of c ur r e nt e nd- of - l i f e c a r e
s e r vi c e s a nd s uppor t . H ow e ve r , s uc h e duc a t i ona l pr ogr a m s a r e l a c ki ng i n t he l i t e r a t ur e .
A i m
T o f i l l t he voi d i n t he l i t e r a t ur e , m y t e a m de s i gne d a c ul t ur a l l y s e ns i t i ve de a t h e duc a t i on
pr ogr a m t i t l e d “ M y L i f e , M y W i s he s ” ba s e d on t he K now l e dge , A t t i t ude , a nd B e ha vi or m ode l .
W e f ur t he r c onduc t e d e x pe r t c ons ul t a t i on i nt e r vi e w s w i t h C hi ne s e he a l t hc a r e pr of e s s i ona l s ,
g e r i a t r i c r e s e a r c he r s , a nd ol de r hos pi c e vol unt e e r s t o s ol i c i t t he i r a t t i t ude s t ow a r d de a t h
e duc a t i on a nd de a t h- r e l a t e d di s c us s i ons , pe r s pe c t i ve s f or ba r r i e r s i n a nd f a c i l i t a t or s f or
c onduc t i ng de a t h e duc a t i on i n C hi na , a nd t he i r de t a i l e d f e e dba c k f or our de a t h e duc a t i on
pr ogr a m . A f t e r t ha t , t he pr og r a m w a s pi l ot t e s t e d i n C hi na t o e x a m i ne i t s f e a s i bi l i t y a nd i m pa c t
on ol de r C hi ne s e c om m uni t y r e s i de nt s ’ de a t h- r e l a t e d know l e dge , a t t i t ude s , a nd a dva nc e pl a nni ng
be ha vi or . F i na l l y , w e t e s t e d t he f e a s i bi l i t y of us i ng a c a r d g a m e f or s ol i c i t i ng pa r t i c i pa nt s ’ e nd-
of - l i f e w i s he s a nd pr e f e r e nc e s . T he i r c a r d s e l e c t i ons w e r e r e c or de d a nd r e a s ons w e r e quot e d.
M e t h od s
T hi s w a s a t w o- s t a ge s t udy . I n S t a g e I A , a f t e r t he de ve l opm e nt of t he pr ogr a m , w e
c onduc t e d i n- de pt h phone i nt e r vi e w s w i t h a g r oup of C hi ne s e H C P s , g e r i a t r i c r e s e a r c he r s , a nd
c om m uni t y - dw e l l i ng ol de r a dul t s w ho a r e f a m i l i a r w i t h t he s ubj e c t m a t t e r , t o g a t he r di f f e r e nt
s t a ke hol de r s ’ opi ni ons a nd a t t i t ude s t ow a r d de a t h e duc a t i on a nd t he i r s pe c i f i c f e e dba c k f or our
i x
pr ogr a m . T he di r e c t e d c ont e nt a na l y s i s w a s us e d f or t he qua l i t a t i ve da t a a na l y s i s . A f t e r t ha t , t he
pr ogr a m de t a i l s w e r e r e vi s e d t o be pr e pa r e d f or de l i ve r y i n C hi na .
S t a g e I B w a s a qua s i - e x pe r i m e nt a l pr e a nd pos t - t e s t c om pa r i s on g r oup s t udy t o e x a m i ne
t he f e a s i bi l i t y a nd i m pa c t s of t he “ M y L i f e , M y W i s he s ” de a t h e duc a t i on pr ogr a m a m ong a
g r oup of c om m uni t y - dw e l l i ng ol de r a dul t s i n L a nz hou, C hi na , on de a t h- r e l a t e d know l e dge
( know l e dge on a dva nc e c a r e pl a nni ng , l i f e - s us t a i ni ng t r e a t m e nt , a nd hos pi c e c a r e ) , a t t i t ude s
( w he t he r a n ol de r a dul t s houl d c ons i de r , w r i t e dow n, a nd di s c us s t he i r e nd- of - l i f e w i s he s i n
a dva nc e ; de a t h a nx i e t y ) , a nd a dva nc e pl a nni ng be ha vi or ( w he t he r one ha s ha d a ny de a t h- r e l a t e d
di s c us s i ons i n t he pa s t w e e k) . T he pr ogr a m l a s t e d f r om O c t obe r 2020 t o J a nua r y 2021. R e pe a t e d
m e a s ur e s A N O V A s , t - t e s t , a nd c hi - s qua r e t e s t w e r e us e d f or t he a na l y s i s .
A va r i e t y of i nt e r a c t i ve a c t i vi t i e s w e r e c onduc t e d dur i ng t he pr og r a m , i nc l udi ng t he G o
W i s h c a r ds g a m e , i n w hi c h pa r t i c i pa nt s w e r e a s ke d t o s e l e c t t he i r m os t i m por t a nt w i s he s a t t he
e nd of l i f e a nd t he r e a s ons be hi nd t he i r s e l e c t i ons . T he y w e r e a l s o a s ke d a bout c ha l l e nge s t ha t
m i g ht oc c ur f or f ul f i l l i ng t hos e w i s he s a nd w ha t c oul d be done s t a r t i ng f r om t he m om e nt t o he l p
t he m a c hi e ve t he w i s he s . T he i r s e l e c t i on of c a r ds w a s de s c r i be d i n t he t a bl e a nd quot a t i ons w e r e
us e d t o i l l us t r a t e t he i r e x pl a na t i ons .
R e s u l t s
A t ot a l of 12 he a l t hc a r e pr of e s s i ona l s / ge r i a t r i c r e s e a r c he r s a nd f our ol de r a dul t e x pe r t s
pa r t i c i pa t e d i n S t a ge I A of t he s t udy . O ve r a l l , t he y he l d a pos i t i ve a t t i t ude t ow a r d de a t h
e duc a t i on f or t he C hi ne s e g e ne r a l publ i c ; how e ve r , s i g ni f i c a nt c ha l l e nge s e x i s t on m i c r o, m e z z o,
a nd m a c r o l e ve l s , ba s e d on t he i r r e s e a r c h, pr a c t i c e , a nd vol unt e e r e xpe r i e nc e s . T he s e i nc l ude
de a t h t a boo i n C hi ne s e c ul t ur e , l a c k of know l e dge on E O L c a r e a m ong he a l t hc a r e pr of e s s i ona l s
a nd t he g e ne r a l popul a t i on, he a l t h c a r e a ge nc i e s l a c ki ng r e s our c e s , a ge nc i e s not a bl e t o m a i nt a i n
x
vol unt e e r s , a nd C hi na not ha vi ng a l e g a l doc um e nt f or one ’ s e nd- of - l i f e w i s he s . I n t e r vi e w e e s
a l s o pr ovi de d de t a i l e d f e e dba c k f or t he pr ogr a m c ont e nt a nd de l i ve r y r e ga r di ng r e c r ui t m e nt ,
pr e pa r a t i on, r e l a t i ons hi p bui l di ng be f or e de l i ve r i ng t he pr ogr a m , l a ngua ge a nd t e r m s , c ont e nt a nd
f or m a t , a nd l e ngt h of t he pr ogr a m . T he y a l s o of f e r e d s ug ge s t i ons f or f ut ur e de a t h e duc a t i on
pr ogr a m s i n C hi na , s uc h a s pos s i bl e t a r ge t popul a t i ons , vol unt e e r m a na ge m e nt , a nd g r e a t e r
s uppor t ne e de d f r om m a na ge m e nt pe opl e of he a l t h c a r e a ge nc i e s , c om m uni t y or ga ni z a t i ons , t he
g ove r nm e nt , a nd s oc i e t y a s a w hol e .
R e ga r di ng S t a g e I B r e s ul t s , 29 ol de r a dul t s w e r e r e c r ui t e d a s i nt e r ve nt i on g r oup ( I G )
pa r t i c i pa nt s a nd 34 a s c ont r ol g r oup ( C G ) pa r t i c i pa nt s . A m ong I G , 23 pa r t i c i pa t e d i n t he de a t h
e duc a t i on pr ogr a m . T he s e i nc l ude 21 pa r t i c i pa nt s w ho c om pl e t e d bot h s e s s i ons , a nd t w o
pa r t i c i pa t e d i n one s e s s i on, r e a c hi ng a n a t t e nda nc e r a t e of 72.4% f or t w o s e s s i ons a nd 79.3% f or
one s e s s i on. F or pos t - i nt e r ve nt i on a s s e s s m e nt , 19 I G pa r t i c i pa nt s a nd 26 C G pa r t i c i pa nt s
c om pl e t e d i t , w i t h 65.5% a nd 76.5% c om pl e t i on r a t e s , r e s pe c t i ve l y . U s i ng t he i nt e nt i on- t o- t r e a t
a na l y s i s , r e s ul t s of r e pe a t e d m e a s ur e s A N O V A s s how e d t ha t t he i nc r e a s e i n know l e dge on
a dva nc e c a r e pl a nni ng of I G c om pa r e d t o C G a t pos t - t e s t w a s s t a t i s t i c a l l y s i g ni f i c a nt ( F = 6.458,
p= 0.014) . A ddi t i ona l l y , us i ng a t - t e s t , a t pos t - t e s t , I G pa r t i c i pa nt s ha d a m or e pos i t i ve a t t i t ude
t ow a r d di s c us s i ng E O L w i s he s w i t h ot he r s i n a dva nc e ( p= 0.044) . A l t houg h not s i g ni f i c a nt , f our
I G pa r t i c i pa nt s ha d c onve r s a t i ons a bout t he i r E O L w i s he s w i t h ot he r s , w hi l e onl y one C G
pa r t i c i pa nt ha d s uc h di s c us s i ons dur i ng t he pa s t w e e k.
R e ga r di ng pl a y i ng t he G o W i s h c a r ds , a m ong 21 I G pa r t i c i pa nt s w ho a t t e nde d t he s e s s i on
t ha t i nc l ude d t he g a m e , 20 c om pl e t e d t he g a m e . P a r t i c i pa nt s s uc c e s s f ul l y s e l e c t e d t he i r m os t
i m por t a nt w i s he s i n phy s i c a l , ps y c hol ogi c a l / s pi r i t ua l , s oc i a l , a nd f i na nc i a l a s pe c t s . T w o
c ha l l e nge s t he y m e nt i one d i n f ul f i l l i ng t he i r w i s he s a r e pot e nt i a l f a m i l y c onf l i c t s r e ga r di ng t he
xi
ol de r a dul t ’ s c a r e c hoi c e s a nd f a m i l y l i vi ng f a r a w a y , t hus l a c ki ng a n oppor t uni t y t o ha ve s uc h
di s c us s i ons w i t h t he m . M e a nw hi l e , t he y r e c ogni z e d t he i m por t a nc e of ha vi ng de a t h- r e l a t e d
c onve r s a t i ons a t a n e a r l i e r s t a g e of l i f e / i l l ne s s , a nd one m e r i t of t he pr ogr a m i s he l pi ng t he m r e -
t hi nk t he t r ut h- w i t hhol di ng i s s ue i n C hi na .
C on c l u s i on
T hi s s t udy i s one of t he f i r s t s t e ps t o de l i ve r de a t h e duc a t i on a nd ha ve de a t h- r e l a t e d
di s c us s i ons t o c om m uni t y - dw e l l i ng C hi ne s e ol de r a dul t s , a popul a t i on t ha t ne e ds s uc h
c onve r s a t i on but l a c ks oppor t uni t i e s . A g r e a t num be r of i m pl i c a t i ons f or r e s e a r c h, pr a c t i c e , a nd
pol i c y w e r e dr a w n f r om t hi s s e r i e s of s t udi e s , a dd w e r e c om m e nd t ha t f ut ur e r e s e a r c he r s a nd
pr a c t i t i one r s t a ke t he m i nt o c ons i de r a t i on t o pr om ot e t he de a t h e duc a t i on m ove m e nt t o a w i de r
c ont e x t i n C hi na ’ s s oc i e t y .
1
C h ap t e r 1: I n t r od u c t i on
D e a t h i s a c onc e r n t o a l l hum a n be i ngs but i s a c e r t a i n r e a l i t y of l i f e . S oc i e t i e s a nd
c ul t ur e s w or l dw i de , how e ve r , ha ve l ong be e n de a t h- de ny i ng, de a t h- de f y i ng, a nd de a t h- a voi di ng .
A s a r e s ul t , s oc i e t i e s w or l dw i de f a i l t o ha ve a n ope n di s c us s i on t o c om m uni c a t e w i t h g e ne r a l
popul a t i ons t he s t or y of de a t h a nd t he a r t of dy i ng ( W a l dr op, 2011) , e s pe c i a l l y i n t he C hi ne s e
s oc i e t y w he r e de a t h i s t he one of t he bi g ge s t t a boo t opi c s .
I n C ha pt e r 1, t he pr i nc i pa l i nve s t i g a t or ( P I ) f i r s t di s c us s e d a n ur ge nt ne e d f or de a t h
e duc a t i on a m ong C hi ne s e popul a t i ons , e s pe c i a l l y c om m uni t y r e s i de nt s i n m a i nl a nd C hi na . A f t e r
t ha t , t he P I de s c r i be d c ur r e nt de a t h e duc a t i on pr ogr a m s a m ong C hi ne s e popul a t i ons . B e s i de s t he
s m a l l num be r of e x i s t i ng s t udi e s , t he P I a l s o poi nt e d out t oo m uc h f oc us on a dva nc e di r e c t i ve
c om pl e t i on, a l a c k of a t t e nt i on t o ot he r di m e ns i ons of c opi ng w i t h de a t h a nd dy i ng be s i de s
phy s i c a l a s pe c t , a nd a ne e d f or t he or e t i c a l f r a m e w or ks i n de ve l opi ng de a t h e duc a t i on t o t he
g e ne r a l ol de r popul a t i on. F i na l l y , t he P I r e por t e d t he de ve l opm e nt of a de a t h e duc a t i on pr ogr a m
t i t l e d “ M y L i f e , M y W i s he s ” , i nc l udi ng i t s ove r a r c hi ng f r a m e w or k, c ont e nt , a nd de l i ve r y f or m a t .
T he c ha pt e r e nds w i t h a n i l l us t r a t i on of t he a i m s of t hr e e pa pe r s dr a w n f r om t hi s s t udy a nd t he
s t udy ’ s pot e nt i a l c ont r i but i ons .
A N e e d f or D e at h E d u c at i on f or C h i n e s e O l d e r A d u l t s
A g ood de a t h i s one of t he g oa l s t ha t i ndi vi dua l s w a nt t o a c hi e ve i n m ode r n s oc i e t y
( M e i e r e t a l ., 2016) . A s t udy s how s t ha t A m e r i c a ns pr e f e r t o ha ve a de a t h w i t h a c c e pt a nc e ,
opt i m a l pa i n a nd s y m pt om m a na ge m e nt , m e di c a l c a r e t ha t i s c onc or da nt w i t h one ’ s pr e f e r e nc e s ,
dy i ng a t hom e , e m ot i ona l pr e pa r a t i on, a nd f or m a l pr e pa r a t i ons f or e nd- of - l i f e c a r e ( C a r r , 2016) .
F or C hi ne s e pe opl e , s om e c onc e pt s m a ni f e s t e d i n pr e vi ous r e s e a r c h i nc l ude d “ no phy s i c a l
t or t ur e ” , “ a pa i nl e s s de a t h ” , “ no de pe nde nc e on ot he r s ” , “ r e c onc i l e w i t h f a m i l y ” , “ f i na nc i a l
2
pl a nni ng f or f a m i l y ” , “ f ul f i l l l a s t w i s he s ” , “ pr e - a r r a nge f une r a l ” , a nd “ ps y c h ol og i c a l l y pr e pa r e d ”
( C ha n e t a l ., 2006, p. 131) , s how i ng s i m i l a r i t i e s t o A m e r i c a ns ’ vi e w s but a l s o pl a c i ng m or e
e m pha s i s on f a m i l y r e l a t i ons hi p a nd pr a gm a t i c t hi ng s s uc h a s f une r a l a r r a nge m e nt a nd f i na nc i a l
pl a nni ng f or f a m i l y .
D ue t o t he de a t h- de ny i ng c ul t ur e , m a ny s oc i e t i e s do not ha ve ope n c onve r s a t i ons a bout
de a t h a nd dy i ng. H ow e ve r , f a i l ur e t o di s c us s or pl a n a he a d of t i m e l e a ve s pe opl e unpr e pa r e d f or
de a t h a nd dy i ng- - f or t he m s e l ve s a nd t he i r l ove d one s , of t e nt i m e s dy i ng w i t h unf i ni s he d bus i ne s s
a nd r e gr e t s ( L e e e t a l ., 2015) . R e s e a r c he r s a nd pr of e s s i ona l s ha ve be e n a dvoc a t i ng f or de a t h
e duc a t i on t o t he publ i c i n a va r i e t y of s e t t i ng s ( e .g., hom e , s c hool s , c hur c he s , w or kpl a c e s ,
m e di c a l s y s t e m , hos pi t a l s , a nd nur s i ng hom e s ) t o he l p i ndi vi dua l s be t t e r unde r s t a nd a nd c ope
w i t h de a t h a nd dy i ng a nd ul t i m a t e l y a c hi e ve a g ood de a t h ( W y a t t , 2018) . U nf or t una t e l y , de a t h
e duc a t i on m os t f r e que nt l y oc c ur s a m ong he a l t h c a r e pr of e s s i ona l s ( H C P s ) a nd s t ude nt s , a s w e l l
a s pe opl e i n he a l t h c a r e s e t t i ng s or l i vi ng i n t he i ns t i t ut i ons ( M e nz i e s e t a l ., 2018) , f a r f r om
r e a c hi ng t he g oa l of de a t h e duc a t i on f or a l l .
M e a nw hi l e , t he be ne f i c i a l e f f e c t s of a dva nc e c a r e pl a nni ng ( A C P ) , de f i ne d a s “ m a ki ng
de c i s i ons a bout t he c a r e one w oul d w a nt t o r e c e i ve i f one be c om e s una bl e t o s pe a k f or
t he m s e l ve s ” ( N a t i ona l P a l l i a t i ve a nd H os pi c e C a r e O r ga ni z a t i on, n.d., pa r a .1) , ha ve be e n
s uppor t e d by a l a r ge body of e vi de nc e , s uc h a s i nc r e a s i ng t he qua l i t y - of - l i f e ( Q O L ) of pe opl e a t
t he e nd- of - l i f e ( E O L ) a nd de c r e a s i ng c a r e gi ve r de pr e s s i on, a nx i e t y , a nd s t r e s s ( B r i nkm a n-
S t oppe l e nbur g e t a l ., 2014) . A C P i nc l ude s g e t t i ng i nf or m a t i on of di f f e r e nt t r e a t m e nt s , de c i di ng
w hi c h t r e a t m e nt one w oul d or w oul d not w a nt a t t he E O L , s ha r i ng one ’ s va l ue s a nd c a r e
pr e f e r e nc e s w i t h ot he r s , a nd c om pl e t i ng t he a dva nc e di r e c t i ve ( A D ) f or m s t o put c a r e
pr e f e r e nc e s i nt o w r i t i ng . A C P i ni t i a t e d by phy s i c i a ns a nd ot he r qua l i f i e d H C P s i s a vi t a l
3
oppor t uni t y f or pe opl e t o t hi nk a bout E O L c a r e a nd t hus i s a g r e a t a ppr oa c h f or de a t h e duc a t i on.
H ow e ve r , m a ny A C P pr ogr a m s ha d a na r r ow f oc us on t he phy s i c a l a s pe c t of c a r e a nd pl a nni ng
( e .g., C he n, 2016; Z ha ng e t a l ., 2016) , ove r l ooki ng t he i m por t a nc e of a n i ndi vi dua l ’ s ot he r t y p e s
of w i s he s , s uc h a s s oc i a l a nd f i na nc i a l .
C hi na i s f a c i ng e nor m ous c ha l l e nge s due t o i t s r a pi dl y a gi ng s oc i e t y . T he U ni t e d N a t i ons
pr oj e c t s t ha t , by 2050, C hi na ’ s s ha r e of a dul t s a ge s 65 a nd ol de r w i l l ha ve r i s e n f r om 12% t o
26% , w i t h a n e s t i m a t e d num be r of 366 m i l l i on ( U ni t e d N a t i ons , 2019) . C hi ne s e ol de r a dul t s
pr e f e r t o l i ve , be c a r e f or , a nd di e a t hom e , w he r e pe opl e f i nd phy s i c a l a nd e m ot i ona l c om f or t ,
a nd f e e l s a f e t y a nd a s e ns e of be l ong i ng ( G u e t l a ., 2014; T a o & L i u, 2019) . A ddi t i ona l l y ,
a l t houg h i t e nde d i n 2015, t he one - c hi l d pol i c y ha s a l r e a dy dr a m a t i c a l l y he i g ht e ne d t he na t i on ’ s
a gi ng c r i s i s . M a ny one - c hi l d pa r e nt s pr e f e r t o c o- r e s i de w i t h t he i r a dul t c hi l d a t a n a dva nc e d a ge .
H ow e ve r , pa r e nt s do not e x pe c t t hi s t o ha ppe n, i n or de r not t o bur de n t he i r c hi l d w i t h e l de r c a r e
( D i ng e t a l ., 2021; G us t a f s on & H ua ng, 2014) . D y i ng pr e f e r e nc e s a nd t he e l de r c a r e r e a l i t y i n
C hi na w a r r a nt t he ne e d f or a nd t he oppor t uni t y t o de l i ve r de a t h e duc a t i on f or ol de r c om m uni t y
r e s i de nt s t o m a ke pl a ns f or t he i r l a t e r l i f e s t a ge a nd E O L . H ow e ve r , l i ke m a ny c ul t ur e s , t he
C hi ne s e hol d t he t r a di t i ona l be l i e f t ha t de a t h i s t a boo a nd not t o be ope nl y di s c us s e d ( C hi , 2018) ,
pos t i ng c ha l l e nge s i n pr om ot i ng de a t h- r e l a t e d di s c us s i ons w i t h t he C hi ne s e publ i c . P r ovi di ng
de a t h e duc a t i on a nd ha vi ng de a t h- r e l a t e d di s c us s i ons w i t h C hi ne s e c om m uni t y r e s i de nt s a r e bot h
va l ua bl e a nd ur ge nt , t o l e t t he i r voi c e s be he a r d, i nc r e a s e c om m uni c a t i on a nd m ut ua l
unde r s t a ndi ng w i t hi n t he f a m i l y , a nd e nha nc e t he i r ove r a l l w e l l - be i ng a t a l a t e r s t a g e of l i f e .
C u r r e n t D e at h E d u c at i on P r ogr am s am on g C h i n e s e O l d e r A d u l t s
I n 2018, t he t e a m c onduc t e d a s c opi ng r e vi e w of e duc a t i ona l i nt e r ve nt i ons f or pr om ot i ng
A C P a m ong C hi ne s e popul a t i ons w or l dw i de . W e i de nt i f i e d 20 s t udi e s , i nc l udi ng s i x c onduc t e d
4
i n H ong K ong, f ol l ow e d by f i ve i n T a i w a n, f our i n S i ng a por e , t hr e e i n m a i nl a nd C hi na , a nd t w o
i n t he U ni t e d S t a t e s . A m ong t he s e , t hr e e w e r e pr o vi de d t o ol de r c om m uni t y r e s i de nt s . H s i e h e t a l .
( 2 013 ) pr o m ot e d A C P i n T a i w a n us i n g a p pr opr i a t e c ul t ur a l c o nc e p t s , s uc h a s l i f e a s f o ur s e a s on s .
A f t e r t he pr ogr a m , 32% of pa r t i c i pa nt s w e r e w i l l i ng t o s i g n A D f or m s , w he r e a s 51.1% c oul d not
a ns w e r i m m e di a t e l y . L e e e t a l . ( 2015) e x a m i ne d t he e f f e c t i ve ne s s of a nur s e - l e d, c ul t ur a l l y
s e ns i t i ve A C P s e m i na r f or C hi ne s e A m e r i c a n a dul t s . A f t e r t he pr ogr a m , 20% c om pl e t e d a n A D ,
a nd 35.6% ha d a n A C P di s c us s i on one m ont h l a t e r . S un e t a l . ( 2017) t e s t e d t he e f f i c a c y of a
c hur c h- ba s e d i nt e r ve nt i on t o i nc r e a s e A D know l e dge a nd be ha vi or c ha nge a m ong C hi ne s e a nd
V i e t na m e s e A m e r i c a ns . T he y r e por t e d s i g ni f i c a nt i nc r e a s e s i n pa r t i c i pa nt s ’ A D - r e l a t e d
know l e dge a nd i nt e nt i on, r e s ul t i ng i n 71.8 % A D c om pl e t i on a nd 25.0 % ha vi ng ha d a pr ox y
c onve r s a t i on. B e s i de s t he s m a l l num be r of s t udi e s c onduc t e d, one i s s ue w i t h pr e vi ous s t udi e s i s
t oo m uc h e m pha s i s on A D c om pl e t i on. H ow e ve r , f oc us i ng on A D c om pl e t i on doe s not a ppl y
w e l l t o C hi na , a s A D f or m s , a l t houg h pr om ot e d by s om e not - f or - pr of i t or ga ni z a t i ons , a r e not
r e c ogni z e d a s l e g a l doc um e nt s i n C hi na .
A ddi t i ona l l y , a s one ’ s E O L w i s he s c a n be m ul t i - di m e ns i ona l , A C P s houl d i nc l ude ot he r
t y p e s of c a r e be s i de s phy s i c a l c a r e a nd t r e a t m e nt . H ow e ve r , i n r e a l i t y , m a ny r e s e a r c he r s us e d t he
c onc e pt w i t h a he a vi e r e m pha s i s on t he phy s i c a l a s pe c t . F or e x a m pl e , Z ha ng e t a l . ( 2015)
c onduc t e d a s t udy i n B e i j i ng on pe opl e ’ s A C P know l e dge a nd a t t i t ude s . T he y r e por t e d t ha t
78.3% of t he C hi ne s e ol de r a dul t s ha d not he a r d of A C P ; 80.9% w a nt e d t o he a r t he t r ut h f r om
t he phy s i c i a n; 52.4% pr e f e r r e d t o m a ke t he i r ow n he a l t hc a r e de c i s i ons , a nd onl y 8.9% pr e f e r r e d
t o e ndur e l i f e - pr ol ongi ng i nt e r ve nt i ons . W e f ur t he r s c r e e ne d t he C hi ne s e l i t e r a t ur e on de a t h
e duc a t i on, hopi ng t o i de nt i f y e duc a t i ona l pr ogr a m s t ha t a ddr e s s m ul t i pl e a s pe c t s of c a r e a nd
pr e f e r e nc e s , a nd f ound t ha t de a t h e duc a t i on i n C hi na a l s o t e nde d t o t a r ge t m e di c a l c ol l e g e
5
s t ude nt s a nd c a nc e r pa t i e nt s a nd t he i r f a m i l i e s ( e .g., L i e t a l ., 2020) . O nl y one s t udy i nc l ude d
ol de r c om m uni t y r e s i de nt s : W a ng e t a l . ( 2021) pr ovi de d a de a t h e duc a t i on pr ogr a m ba s e d on t he
K now l e dge , A t t i t ude , a nd B e ha vi or ( K A B ) m ode l t o 30 nur s i ng hom e a nd 30 c om m uni t y -
dw e l l i ng ol de r a dul t s i n B e i j i ng. T h e i r qua l i t a t i ve f i ndi ng s s how e d t ha t pa r t i c i pa nt s be c a m e m or e
know l e dge a bl e a bout de a t h a nd dy i ng, ha d l ow e r de a t h a nxi e t y a f t e r t he pr ogr a m , be ga n t o t hi nk
a bout or e ve n pr e pa r e f or de a t h a nd dy i ng, be c a m e m or e pr e pa r e d f or a c c i de nt a l e ve nt s , a nd
w oul d c he r i s h t he r e m a i ni ng t i m e . N o qua nt i t a t i ve da t a w a s c ol l e c t e d.
F i na l l y , t he a bs e nc e of t he or e t i c a l f r a m e w or ks i s one dr a w ba c k of pr e vi ous de a t h
e duc a t i on f or C hi ne s e ol de r a dul t s . A s de s c r i be d a bove , K A B m ode l w a s ut i l i z e d by W a ng e t a l .
( 2021) w i t h f our - s t a ge e duc a t i on- - unde r s t a ndi ng of de a t h a nd dy i ng, a t t i t ude s t ow a r d de a t h a nd
dy i ng, pr e pa r a t i on f or de a t h a nd dy i ng, a nd t hi ng s be y o nd de a t h. S un e t a l . ( 2017) us e d t he
T he or y of R e a s one d A c t i on ( T R A ) t o g ui de t he i r pr ogr a m de ve l opm e nt i n t he U ni t e d S t a t e s ,
w hi c h s t a t e s t ha t one ’ s be ha vi or i s de t e r m i ne d by t he i r i nt e nt i on t o pe r f or m i t , a nd t he i nt e nt i on
i s de t e r m i ne d by one ’ s a t t i t ude s a nd s ubj e c t i ve nor m s t ow a r d t he be ha vi or ( A z j e n & F i s hbe i n,
1980) . S un a nd c ol l e a gue s f oc us e d on t he s ubj e c t i ve nor m s t ow a r d A C P . T he y de l i ve r e d t he i r
A C P pr ogr a m t o f our A s i a n c hur c he s i n t he U ni t e d S t a t e s by pr ovi di ng e duc a t i on a nd c r e a t i ng
pos i t i ve s ubj e c t i ve nor m s a bout A D t hr ough t he e ndor s e m e nt by c hur c h l e a de r s a t t he be gi nni ng
of t he pr ogr a m , t o c r e a t e a n e nvi r onm e nt t ha t i s m or e pos i t i ve t ow a r d A C P .
T h e or i e s on D e at h A n xi e t y
B e c a us e de a t h i s a c om pl e x e x pe r i e nc e , r e s e a r c he r s ha ve de ve l ope d m ul t i - di m e ns i ona l
f r a m e w or ks t o i nve s t i g a t e t he de a t h- a nd dy i ng- r e l a t e d t opi c s . O ne of t he m os t w i de l y us e d
c onc e pt s t o s t udy de a t h a nx i e t y i s t he de a t h s y s t e m . K a s t e nba um ( 2001, p. 61) de s c r i be s t he
de a t h s y s t e m a s “ a n i nt e r pe r s ona l , s oc i oc ul t ur a l , a nd s y m bol i c ne t w or k t hr ough w hi c h one ’ s
6
r e l a t i ons hi p t o m or t a l i t y i s m e di a t e d by s oc i e t y ” , a nd t ha t t he de a t h s y s t e m i s s ha pe d by t w o
t y p e s of f a c t or s : f a c t ua l f a c t or s a nd t he or e t i c a l f a c t or s . F a c t ua l f a c t or s r e f e r t o bi ol og i c a l
i nf l ue nc e s , a nd t he or e t i c a l f a c t or s m a i nl y m a ni f e s t a s r e l i g i os i t y a nd s pi r i t ua l i t y .
O ne f a c t ua l f a c t or t ha t ha s s how n t o be a s s oc i a t e d w i t h de a t h a nx i e t y i s a g e . T he r e s ul t s ,
how e ve r , w e r e i nc ons i s t e nt . S t udi e s on H ong K ong C hi ne s e uni ve r s i t y s t ude nt s a nd ol de r a dul t s
s uppor t e d t he i de a t ha t ol de r a ge w a s r e l a t e d t o l ow e r de a t h a nx i e t y ( W u e t a l ., 2002; W u e t a l . ,
2004) . M e a nw hi l e , t he r e w e r e s t udi e s s how i ng t ha t t he f e a r of de a t h be c a m e he i ght e ne d a s ol de r
pe opl e a ppr oa c he d de a t h ( K ur e s hi & H us a i n , 1981; M ul l i ns & L ope z , 1982) , w hi l e ot he r s
s ug ge s t e d t ha t de a t h a nx i e t y t e nde d t o s t a bi l i z e dur i ng one ’ s f i na l de c a de s of l i f e ( F or t ne r &
N e i m e y e r , 1999) .
R e ga r di ng one ’ s phy s i c a l a nd ps y c h ol ogi c a l w e l l - be i ng, F or t ne r a nd N e i m e y e r ( 1999)
r e vi e w e d 49 publ i s he d a nd unpubl i s he d a r t i c l e s on c or r e l a t e s of de a t h a nx i e t y , w i t h f i ndi ng s
s ug ge s t i ng t ha t m or e phy s i c a l a nd ps y c h ol og i c a l pr obl e m s w e r e r e s pe c t i ve l y pr e di c t i ve of hi g he r
l e ve l s of de a t h a nx i e t y i n a n ol de r popul a t i on . I n a ddi t i on, s i g ni f i c a nt pos i t i ve c or r e l a t i ons
be t w e e n de a t h a nxi e t y a nd one ’ s a nx i e t y a nd de pr e s s i on l e ve l s ha ve be e n f ound i n non- W e s t e r n
s a m pl e s , s uc h a s t he A r a bi a n a nd L e ba ne s e ( A bde l - K ha l e k, 1997, 1998) . S om e t hi ng r e l e va nt t o
c ons i de r i s t he pr e s e nc e of r e c e nt s t r e s s or s . I n t he s t udy of W u e t a l . ( 2002) , r e s e a r c he r s f ound
t he c or r e l a t i on be t w e e n t he pr e s e nc e of r e c e nt s t r e s s f ul e ve nt s a nd hi g h l e ve l de a t h a nxi e t y
a m ong a g r oup of c om m uni t y - dw e l l i ng C hi ne s e ol de r a dul t s i n H ong K ong.
F or t he or e t i c a l f a c t or s , hi g h l e ve l s of r e l i gi os i t y , a be l i e f i n t he a f t e r l i f e , ha vi ng a pur pos e
i n l i f e , a nd hi g h c l os e ne s s t o G od ha ve be e n s how n t o c or r e l a t e w i t h l ow de a t h a nx i e t y ( e .g.,
D a a l e m a n & D obbs , 2010; H ui e t a l ., 2007 ) . S i m i l a r l y , a not he r c l a s s i c a l c onc e pt i nf l ue nc i ng
ol de r a dul t s ’ de a t h a t t i t ude s i s e g o i nt e g r i t y de ve l ope d by E . H . E r i ks on ( 1950, 1982) , w he n one
7
c om e s t o t e r m s w i t h t he i r l i f e a nd a c c e pt s i t , a nd t hos e w ho f i nd m e a ni ng i n l i f e a nd r e a c h e go
i nt e g r i t y w oul d e x hi bi t l e s s de a t h a nx i e t y ( M e y e r s e t a l ., 2009) . M e a nw hi l e , di f f e r e nt r e l i gi ous
a f f i l i a t i ons m i g ht e x e r t di f f e r e nt i nf l ue nc e a nd t hus ne e d t o be c a r e f ul l y e x a m i ne d. F or e x a m pl e ,
B uddhi s t a f t e r l i f e be l i e f s ( r e i nc a r na t i on) w e r e f ound unr e l a t e d t o pe r s ona l de a t h a nx i e t y a m ong
ol de r H ong K ong B uddhi s t s ( H ui & C ol e m a n, 2012) . T he s pe c ul a t i on w a s t ha t B uddhi s t s vi e w
r e i nc a r na t i on not a s a s ol a c e but a s a r e ne w a l of s uf f e r i ng s due t o unw hol e s om e ka r m a ( H ui &
C ol e m a n, 2012) .
A not he r c l a s s i c a l t he or y on de a t h a nx i e t y i s t he T e r r or M a na ge m e nt T he or y ( T M T )
de ve l ope d by G r e e nbe r g, P y s z c z y n s ki , a nd S ol om on ( 1986) , w hi c h s t a t e s t ha t “ t he a w a r e ne s s of
de a t h e nge nde r s pot e nt i a l l y de bi l i t a t i ng t e r r or t ha t i s ‘ m a na ge d ’ by t he de ve l opm e nt a nd
m a i nt e na nc e of c ul t ur a l w or l dvi e w s : hum a nl y c ons t r uc t e d be l i e f s a bout r e a l i t y s ha r e d by
i ndi vi dua l s t ha t m i ni m i z e e x i s t e nt i a l dr e a d by c onf e r r i ng m e a ni ng a nd va l ue ” ( E r ne s t B e c ke r
F ounda t i on, n.d., pa r a 3) . R e l i g i os i t y a nd s pi r i t ua l i t y a l s o pl a y a n e s s e nt i a l r ol e i n T M T : w he n
pe opl e c ope w i t h a nd e a s e t he e x i s t e nt i a l a nx i e t y , t he y pur s ue e i t he r l i t e r a l ( e .g., s oul s , he a ve ns ,
a f t e r l i f e ) or s y m bol i c i m m or t a l i t y ( e .g., be i ng pa r t of a g r e a t na t i on, ha vi ng c hi l dr e n) t o m a i nt a i n
m e a ni ng i n l i f e .
A l l t h e s e t he or i e s de s c r i be d f a c t or s t ha t i nf l ue nc e one ’ s de a t h a nx i e t y , e m pha s i z i ng one ’ s
va l ue s a nd m e a ni ng s i n l i f e , e s pe c i a l l y a t a l a t e r s t a ge of l i f e . T hi s s houl d be a vi t a l pa r t of t he
de a t h e duc a t i on pr ogr a m de l i ve r e d t o g e ne r a l ol de r a dul t popul a t i ons .
D e ve l op m e n t of “M y L i f e , M y Wi s h e s ” D e at h E d u c at i on P r ogr am
B e a r i ng i n m i nd t he voi d i n t he l i t e r a t ur e di s c us s e d a bove ( i .e ., t he s m a l l num be r of de a t h
e duc a t i on pr ogr a m s f or ol de r C hi ne s e c om m uni t y r e s i de nt s , e s pe c i a l l y i n m a i nl a nd C hi na ; a
f oc us on A D c om pl e t i on; a l a c k of a t t e nt i on t o ot he r di m e ns i ons of c opi ng w i t h de a t h a nd dy i ng
8
be s i de s phy s i c a l a s pe c t ; a ne e d f or t he or e t i c a l f r a m e w or ks i n de ve l opi ng de a t h e duc a t i on t o t he
g e ne r a l ol de r popul a t i on) , t he P I l e d a t e a m a nd de ve l ope d a de a t h e duc a t i on pr ogr a m , ba s e d on
t he l i t e r a t ur e f r om t he s c opi ng r e vi e w a nd t he P I ’ s de a t h e duc a t i on pr a c t i c e w i t h C hi ne s e
i m m i g r a nt s i n t he U ni t e d S t a t e s .
T he g oa l of t he pr ogr a m , w hi c h i s t i t l e d “ M y L i f e , M y W i s he s ” , i s t o he l p c om m uni t y -
dw e l l i ng C hi ne s e ol de r a dul t s ove r c om e t he de a t h a nx i e t y , l e a r n a bout E O L pr e pa r a t i on i n
phy s i c a l , ps y c h ol ogi c a l , s pi r i t ua l , f i na nc i a l , a nd s oc i a l a s pe c t s , a nd ha ve de a t h- r e l a t e d
di s c us s i ons w i t h t he l ove d one s . T he pr ogr a m w a s de s i gne d unde r t he g ui da nc e of t he K A B
m ode l , w hi c h s t a t e s t ha t one ’ s he a l t h- r e l a t e d be ha vi or s w i l l be a c hi e ve d t hr oug h know l e dge
a c qui s i t i on, be l i e f g e ne r a t i on, a nd be ha vi or f or m a t i on ( B e t t i ng ha us , 1986) ( T a bl e 1) .
R e ga r di ng know l e dge a c qui s i t i on, a s ur ve y s t udy i n C hi na ( X u e t a l ., 2020) s how e d t ha t
c om m uni t y r e s i de nt s e x pr e s s e d a g r e a t de m a nd f or know l e dge a nd i nf or m a t i on on E O L
t r e a t m e nt a nd c a r e , w hi c h r a nke d f i r s t a m ong t he i r de a t h e duc a t i on ne e ds ( ot he r opt i ons i nc l ude d
de a l i ng w i t h g r i e f , c a r e gi vi ng know l e dge a nd s ki l l s a t E O L , body dona t i on- r e l a t e d i s s ue s , e t c .) .
I n our s t udy , s hor t e x pl a na t i ons a nd di s c us s i ons w e r e us e d t o he l p ol de r a dul t pa r t i c i pa nt s l e a r n
a b out di f f e r e n t c a r e c hoi c e s a t E O L i n C hi na , i nc l udi ng va r i o us t y p e s of l i f e - s us t a i n i ng t r e a t m e nt ,
hos pi c e , a nd pa l l i a t i ve c a r e .
F or de a t h- r e l a t e d a t t i t ude s , l i f e r e vi e w pr a c t i c e a nd c a s e s c e na r i os on unpr e pa r e d de a t h
a nd dy i ng e x pe r i e nc e s w e r e us e d. L i f e r e vi e w i nt e r ve nt i ons ha ve s how n t o de c r e a s e ol de r a dul t s ’
de pr e s s i on a nd a nx i e t y l e ve l s w hi l e i nc r e a s i ng t he i r l i f e s a t i s f a c t i on, s e l f - a c c e pt a nc e , bondi ng ,
a nd r e c onne c t i ng w i t h l ove d one s ( H a i ght & H a i ght , 2007) . I n our pr ogr a m , w he n c onduc t i ng t he
l i f e r e vi e w , t he i nt e r ve nt i oni s t f oc us e d on one ’ s e x pe r i e nc e of i l l ne s s e s a nd de a t h a nd dy i ng of
t he i r l ove d one s a nd a s ke d a pa r t i c i pa nt how t he y f e l t w i t h s uc h s i t ua t i ons . I n t hi s w a y , t he
9
i nt e r ve nt i oni s t w oul d unde r s t a nd f a c t ua l a nd t he or e t i c a l f a c t or s t ha t i nf l ue nc e one ’ s de a t h- r e l a t e d
a t t i t ude s a nd br i ng a bout a pa r t i c i pa nt ’ s s t r e ngt h, r e s i l i e nc e , a nd pe r s ona l g r ow t h f r om s uc h
a dve r s i t i e s t o he l p one a c hi e ve e go i nt e g r i t y a nd de c r e a s e de a t h a nx i e t y . I t i s not e w or t hy t ha t , a s
i ndi c a t e d by l i t e r a t ur e , r e c e nt s t r e s s or s a r e a f a c t ua l f a c t or t ha t m i g ht t r i g ge r one ’ s unha ppy
m e m or i e s a nd ne ga t i ve f e e l i ng s a nd i nc r e a s e one ’ s de a t h a nx i e t y ( W u e t a l ., 2002) . T he
i nt e r ve nt i oni s t bor e t hi s i n m i nd a nd pa i d a t t e nt i on t o t he pa r t i c i pa nt ’ s f e e l i ng s w he n t he y
de s c r i be d t he i r r e c e nt e x pe r i e nc e s of a l ove d one ’ s de a t h, a nd i nt e r ve ne d i f s he j udg e d t he
pa r t i c i pa nt t o be not s ui t a bl e t o c ont i nue t he pr ogr a m , w hi l e us i ng ot he r t e c hni que s f or de a l i ng
w i t h g r i e f a nd be r e a ve m e nt a nd l i nki ng s oc i a l s e r vi c e a nd r e s our c e s i f ne e de d.
P r e vi ous r e s e a r c h f ound t ha t t he C hi ne s e pr e f e r t o di s c us s de a t h a nd dy i ng i ndi r e c t l y ( L e e
e t a l ., 2014; Y ona s hi r o ‐ C ho e t a l . 2016 ) . I n t w o s t udi e s ( C hu e t a l . 2011; F ung e t a l . 2010) , t he
us e of hy p ot he t i c a l s c e na r i os ( e .g., s e ve r e va s c ul a r de m e nt i a , c hr oni c obs t r uc t i ve a i r w a y di s e a s e ,
a t e r m i na l i l l ne s s , a nd a pe r s i s t e nt ve ge t a t i ve s t a t e ) w a s r e por t e d t o he l p e nha nc e pa r t i c i pa nt s ’
unde r s t a ndi ng of t r e a t m e nt de c i s i on- m a ki ng. I n our pr ogr a m , w e a l s o us e d a c a s e s c e na r i o
de ve l ope d by t he t e a m t o he l p a pa r t i c i pa nt t hi nk a bout E O L c a r e c hoi c e s ( t he c a s e s c e na r i o w a s
l a t e r c ha nge d t o a c e l e br i t y ’ s r e a l - l i f e s t or y , w hi c h i s de s c r i be d i n C ha pt e r 2) . O ve r a l l , t hr ough
l i f e r e vi e w a nd c a s e s c e na r i o di s c us s i on, w e hy p ot he s i z e d t ha t t he i nt e r ve nt i on w oul d f a vor a bl y
i m pa c t pa r t i c i pa nt s ’ a t t i t ude s t ow a r d a dva nc e pl a nni ng .
R e ga r di ng a dva nc e pl a nni ng be ha vi or , w e a i m e d t o m ode l i t t hr ough g oi ng t hr oug h a n
A D f or m , pl a y i ng a g a m e , a nd w a t c hi ng a f a m i l y c om m uni c a t i on vi de o a bout i ni t i a t i ng de a t h-
r e l a t e d di s c us s i ons w i t h l ove d one s . A s A D f or m s a r e not l e g a l i z e d i n C hi na , i t w a s us e d m a i nl y
a s a c om m uni c a t i on t ool , a nd t he f oc us w a s pl a c e d on c ons i de r i ng a nd di s c us s i ng E O L w i s he s i n
a dva nc e . T he F i ve W i s he s ( F i ve W i s he s , n.d.) , a t y p e of A D f or m , c ons i s t s of f i ve pa r t s : he a l t h
10
c a r e a ge nt , m e di c a l t r e a t m e nt c hoi c e s , w i s he s f or be i ng c om f or t a bl e , w i s he s f or how t o be
t r e a t e d by ot he r s , a nd w i s he s f or w ha t one w a nt s ot he r s t o know . T he F i ve W i s he s w a s us e d i n
pr e vi ous s t udi e s a m ong C hi ne s e ol de r a dul t s . F or e xa m pl e , L e e e t a l . ( 2015) pr ovi de d a s t e p- by -
s t e p g ui de f or C hi ne s e A m e r i c a ns t o c om pl e t e t he F i ve W i s he s , w i t h i nc r e a s e d c om pl e t i on r a t e s
i n F i ve W i s he s c om pl e t i on a nd di s c us s i on. I n C hi na , t he F i ve W i s he s w a s t r a ns l a t e d i nt o
s i m pl i f i e d C hi ne s e by t he B e i j i ng L i vi ng W i l l P r om ot i on A s s oc i a t i on ( L W P A ,
ht t ps : / / w w w .l w pa .or g.c n/ ) , a n or g a ni z a t i on a i m i ng t o pr om ot e l i vi ng w i l l s a nd E O L c a r e i n
C hi na . S om e c ul t ur a l r e vi s i ons of t e r m s a nd e x pr e s s i ons w e r e m a de t o t he f or m . F or e x a m pl e ,
L W P A r e pl a c e d t he t e r m “ he a l t h c a r e a ge nt ” w i t h “ pe opl e w ho c a n he l p m e ” , a s he a l t h c a r e
a ge nt i s not l e ga l l y r e c ogni z e d i n C hi na .
T he G o W i s h c a r ds g a m e ha s di f f e r e nt ve r s i ons ( G o W i s h, n.d.) . I t s C hi ne s e ve r s i on w a s
de ve l ope d by t he C hi ne s e A m e r i c a n C oa l i t i on f or C om pa s s i ona t e C a r e ( C A C C C ) i n t he U ni t e d
S t a t e s . I t c ons i s t s of 54 c a r ds , i nc l udi ng 52 c a r ds w i t h f our di f f e r e nt t y p e s of E O L w i s he s ( i .e .,
phy s i c a l , ps y c h ol ogi c a l / s pi r i t ua l , s oc i a l , a nd f i na nc i a l ) pr i nt e d on e ve r y s i ng l e c a r d, a nd
a ddi t i on a l t w o ope n - e nde d c a r ds . T o pl a y t he ga m e , a pa r t i c i pa nt w a s a s ke d t o pi c k c a r ds ( w i s he s )
t ha t a r e m os t i m por t a nt t o t he m a t E O L , a nd di s c us s t he r e a s ons be hi nd t he s e l e c t i on a nd w ha t
s houl d be w or ke d on s t a r t i ng f r om t hi s m om e nt . T he g a m e ha s be e n us e d a m ong pe opl e w i t h
s e r i ous i l l ne s s e s i n C hi na a s a n i ns t r um e nt t o unde r s t a nd a pa t i e nt ’ s va l ue s a nd s ol i c i t t he i r
w i s he s a nd pr e f e r e nc e s ( e .g., H e , 2021) . A s f or t he g e ne r a l popul a t i on, t o our know l e dge , t he
g a m e ha s be e n us e d i n c om m uni t y de a t h e duc a t i on by C A C C C i n t he U ni t e d S t a t e s ; how e ve r , no
a c a de m i c r e s e a r c h ha s be e n done t o r e c or d t hi s us e a nd t o m e a s ur e out c om e s .
F i na l l y , a s i n a f a m i l y - o r i e nt e d c ul t ur e , w e di s c us s e d w i t h a pa r t i c i pa nt how t o i ni t i a t e
de a t h- r e l a t e d di s c us s i ons w i t h t he l ove d one s us i ng a vi de o. I n S ung e t a l ., ( 2017) , ol de r a dul t s i n
11
T a i w a n w e r e r e a dy f or A C P but w a nt e d t o know how t o ha ndl e f a m i l y i nc ongr ue nc e a nd
obj e c t i ons i n or de r t o e nga ge f a m i l y i nvol ve m e nt . W e hy p ot he s i z e d t ha t us i ng F i ve W i s he s a nd
G o W i s h c a r ds a nd di s c us s i ng how t o ha ve di f f i c ul t c onve r s a t i ons w i t h l ove d one s w oul d he l p
f a c i l i t a t e de a t h- r e l a t e d di s c us s i ons a m ong ol de r C hi ne s e c om m uni t y r e s i de nt s a nd he l p t he m
t hi nk a bout t he i r va l ue s , pr e f e r e nc e s , a nd w i s he s i n a m or e i nt e r a c t i ve w a y , a nd f i na l l y i nc r e a s e
t he i r w i l l i ng ne s s a nd a c t i on i n ha vi ng s uc h c onve r s a t i ons .
T he s ubs e que nt c ha pt e r s a r e a s e r i e s of pa pe r s ba s e d on our de a t h e duc a t i on pr ogr a m ,
r e por t i ng our f i ndi ng s a nd i m pl i c a t i ons dr a w n f r om S t a g e I A a nd I B of t he de ve l opm e nt a nd
t e s t i ng of t he pr ogr a m . A c c or di ng t o t he N I H S t a g e M ode l f or be ha vi or i nt e r ve nt i on
de ve l opm e nt ( O nke n e t a l ., 2014) , S t a g e I A i nc l ude s t he g e ne r a t i on of ne w be ha vi or a l
i nt e r ve nt i ons a s w e l l a s t he m odi f i c a t i on, a da pt a t i on, or r e f i ne m e nt of e x i s t i ng i nt e r ve nt i ons , a nd
S t a g e I B r e f e r s t o f e a s i bi l i t y a nd pi l ot t e s t i ng . A f t e r t he de ve l opm e nt of t he pr og r a m , w e
c onduc t e d 16 i n- de pt h i nt e r vi e w s w i t h C hi ne s e H C P s , g e r i a t r i c r e s e a r c he r s , a nd c om m uni t y -
dw e l l i ng ol de r a dul t s w ho a r e f a m i l i a r w i t h t he s ubj e c t m a t t e r , t o g a t he r di f f e r e nt s t a ke hol de r s ’
opi ni ons a nd a t t i t ude s t ow a r d de a t h e duc a t i on a nd t he i r s pe c i f i c f e e dba c k f or our pr og r a m . T he s e
S t a g e I A f i ndi ng s w e r e r e por t e d i n C ha pt e r 2. A f t e r t ha t , w e de l i ve r e d t he pr ogr a m t o a g r oup of
c om m uni t y - dw e l l i ng ol de r a dul t s i n L a nz hou, C hi na , a nd r e por t e d t he pr ogr a m ’ s i m pa c t on
de a t h- r e l a t e d know l e dge , a t t i t ude s , a nd a dva nc e pl a nni ng be ha vi or . T he s e S t a ge I B r e s ul t s w e r e
r e por t e d i n C ha pt e r 3. I n C ha pt e r 4, w e r e por t e d pa r t i c i pa nt s ’ s e l e c t i on of G o W i s h c a r ds dur i ng
t he i nt e r ve nt i on a nd t he i r r e a s ons be hi nd t he s e l e c t i ons . F i na l l y , i n C ha pt e r 5, c onc l us i ons w e r e
dr a w n f r om t he f i ndi ng s w i t h i m pl i c a t i ons f or f ut ur e r e s e a r c h, pr a c t i c e , a nd pol i c y . O ur s t udy
a nd f i ndi ng s w oul d c ont r i but e t o bot h de a t h e duc a t i on t he or i e s a nd pr a c t i c e , by i de nt i f y i ng
f a c t ua l a nd t he or e t i c a l f a c t or s t ha t i m pa c t pe opl e ’ s know l e dge , a t t i t ude s , a nd a c t i on a t a l a t e r
12
s t a ge of l i f e a nd pi npoi nt i ng opt i m a l de a t h e duc a t i on c ont e nt a nd de l i ve r y f or m a t f or
c om m uni t y - dw e l l i ng C hi ne s e ol de r a dul t s , a g r oup t ha t ne e ds de a t h- r e l a t e d di s c us s i ons but l a c k
s uc h oppor t uni t i e s a nd r e s our c e s .
13
C h ap t e r 2: D e ve l op m e n t an d F or m at i ve E val u at i on of a D e at h E d u c at i on I n t e r ve n t i on f or
C h i n e s e O l d e r A d u l t s
I n t r od u c t i on
D e a t h e duc a t i on, a n e duc a t i on t r y i ng t o t r a ns f or m t he de a t h- a voi di ng c ul t ur e a nd e nha nc e
i ndi vi dua l s ’ a bi l i t i e s t o de a l w i t h de a t h- r e l a t e d pr a c t i c e s , ha s be e n i nc r e a s i ng l y di s c us s e d a s a
publ i c he a l t h i s s ue ( K e l l e he a r , 2015) . I n C hi na , w he r e de a t h i s t r a di t i ona l l y vi e w e d a s t a boo but
i s now f a c i ng c om pl e x m a t t e r s a s a r a pi dl y a gi ng s oc i e t y , de a t h e duc a t i on ha s be e n de ve l ope d
g r a dua l l y t o pr e pa r e pe opl e t o de a l w i t h de a t h- a nd dy i ng- r e l a t e d i s s ue s a nd t o bui l d a c ul t ur e
t ha t i s pos i t i ve a nd e m pa t he t i c ( C hi , 2018) .
S o f a r i n C hi na , de a t h e duc a t i on f or non- pr of e s s i ona l s m a i nl y ha s be e n c onduc t e d a m ong
l a t e - s t a ge c a nc e r pa t i e nt s , a s t he i l l ne s s i s i r r e ve r s i bl e a nd pr ovoke s f i e r c e e m ot i ons s uc h a s
a nge r , f e a r , a nd de pr e s s i on ( e .g., C he n e t a l ., 2018; J i a ng & S un, 2021) . S om e c om m uni t y -
dw e l l i ng ol de r a dul t s be l i e ve , t ha t i f t he y a r e s t i l l he a l t hy , t he y c a n de f e r de a t h- r e l a t e d
di s c us s i on s t o a l a t e r s t a ge of l i f e or de l e ga t e de c i s i on - m a ki ng t o f a m i l y ( L o e t a l . 2017; T a y e t a l .
2015) . H ow e ve r , i t m i g ht be t oo l a t e t o di s c us s E O L i s s ue s w he n one i s a t a l a t e r s t a ge of l i f e or
i l l ne s s due t o c ogni t i ve i m pa i r m e nt , a nd t hus r e l y i ng on t he f a m i l y t o m a ke de c i s i ons , t he i r
c hoi c e s m i g ht not a c c ur a t e l y r e f l e c t t he ol de r a dul t ’ s w i s he s f or E O L c a r e a nd s uppor t .
A ddi t i ona l l y , c om m uni t y r e s i de nt s i n C hi na a r e f a c i ng c ha l l e nge s i n e l de r c a r e . A ppr ox i m a t e l y
70% of C hi ne s e ol de r a dul t s pr e f e r r e d t o be c a r e d f or a t hom e ( T a o & L i u, 2019) . H ow e ve r , t he i r
c hi l dr e n ( f or m a ny , t he onl y c hi l d) a nd c l os e one s m i g ht l i ve f a r a pa r t , l i ve a br oa d, or ha ve
pa s s e d a w a y ( L i e t a l ., 2020) , w a r r a nt i ng t he i m por t a nc e of pl a nni ng i n a dva nc e t he c a r e t he y
pr e f e r a t a l a t e r s t a ge of l i f e a nd a t E O L .
S e e i ng t he de a t h e duc a t i on ’ s i r r e pl a c e a bl e w or t h a s one ne c e s s a r y a nd ur ge nt publ i c
14
he a l t h c a m pa i gn t o c ont r i but e t o t he ol de r a dul t s ’ a dva nc e pl a nni ng , t he P I l e d a t e a m a nd
de ve l ope d a de a t h e duc a t i on pr ogr a m t i t l e d “ M y L i f e , M y W i s he s ” t a r ge t i ng c om m uni t y -
dw e l l i ng C hi ne s e ol de r a dul t s . A f t e r de ve l opi ng t he pr ogr a m , t he t e a m w a nt e d t o f ur t he r r e f i ne i t
t hr ough f or m a t i ve e va l ua t i on. F or m a t i ve e va l ua t i ons a r e c onduc t e d dur i ng pr og r a m de ve l opm e nt
or e a r l y s t a ge s of i m pl e m e nt a t i on, w i t h a pur pos e f or i m pr ovi ng t he i nt e r ve nt i on de s i g n t hr oug h
a hi g hl y c ons ul t a t i ve r e f l e c t i on ( U ni t e d N a t i ons P opul a t i on F und, 2016) . W e c onduc t e d 16
e x pe r t c ons ul t a t i on i nt e r vi e w s w i t h C hi ne s e H C P s , g e r ont ol ogi c a l r e s e a r c he r s , a nd c om m uni t y
ol de r a dul t r e s i de nt s i n C hi na . T he g oa l of t he s t udy w a s t o s ol i c i t t he e x pe r t s ’ a t t i t ude s t ow a r d
de a t h e duc a t i on a nd de a t h- r e l a t e d di s c us s i ons , pe r s pe c t i ve s f or ba r r i e r s i n a nd f a c i l i t a t or s f or
c onduc t i ng de a t h e duc a t i on i n C hi na , a nd t he i r de t a i l e d f e e dba c k f or our de a t h e duc a t i on
pr ogr a m .
M e t h od s
A l l a c t i vi t i e s w e r e r e vi e w e d a nd a ppr ove d by t he uni ve r s i t y ’ s I n s t i t ut i ona l R e vi e w B oa r d
( I R B ) .
“M y L i f e , M y Wi s h e s ” D e at h E d u c at i on P r ogr am
O ur pr ogr a m , t i t l e d “ M y L i f e , M y W i s he s ” , w a s de s i gne d ba s e d on t he K now l e dge ,
A t t i t ude , a nd B e ha vi or ( K A B ) m ode l ( B e t t i ng ha us , 1986) , w i t h a va r i e t y of i nt e r a c t i ve a c t i vi t i e s
a i m e d t o he l p pa r t i c i pa nt s g a i n know l e dge of di f f e r e nt E O L c a r e c hoi c e s i n C hi na , i m pr ove
a t t i t ude s t ow a r d a dva nc e pl a nni ng , a nd i nc r e a s e one ’ s s e l f - e f f i c a c y a nd a bi l i t y t o pe r f or m
a dva nc e pl a nni ng i n m ul t i pl e di m e ns i ons .
T ab l e 1
“M y L i f e , M y W i s h e s ” P r ogr am O u t l i n e ( or i gi n al )
C ont e nt
D a y 1
( I n di vi dua l )
“ T h e T r a i n o f L i f e ” ( v i d e o , d i s c u s s i o n )
L i f e r e v i e w , f o c u s i n g o n i l l n e s s o r d e a t h e x p e r i e n c e s o f p a r t i c i p a n t s
o r t h e i r l o v e d o n e s ( d i s c u s s i o n )
15
W h y s h o u l d p e o p l e m a k e p l a n s f o r E O L c a r e ? ( d i s c u s s i o n )
1 0 - m i n b r e a k
A c a s e s c e n a r i o t o e x p l a i n d i f f e r e n t o p t i o n s a t E O L ( l e c t u r e , c a s e
s t u d y )
G o W i s h c a r d s ( g a m e )
Q & A
D a y 2
( G r oup)
G o i n g t h r o u g h t h e F i v e W i s h e s f o r m ( l e c t u r e , d i s c u s s i o n )
1 0 - m i n b r e a k
H o w t o i n i t i a t e a n d h a v e d e a t h - r e l a t e d d i s c u s s i o n s w i t h f a m i l y
m e m b e r s a n d H C P s ? ( v i d e o , d i s c u s s i o n )
I n t r o d u c t i o n o f t h e B e i j i n g L i v i n g W i l l A s s o c i a t i o n a n d C h i n a W i l l
R e g i s t r a t i o n C e n t e r
Q & A
A c c or di ng t o t he pl a n, t he pr ogr a m ( T a bl e 1) ha s t w o s e s s i ons s pr e a d ove r t w o da y s , w i t h
e a c h s e s s i on l a s t i ng 2 hour s w i t h a 10- m i n br e a k w i t hi n e a c h s e s s i on. T he f i r s t s e s s i on i s
c onduc t e d i ndi vi dua l l y , a nd t he s e c ond s e s s i on i n t he g r oup f or m a t . O n t he f i r s t da y , t he pr ogr a m
s t a r t s w i t h w a t c hi ng a Y ouT ube vi de o t i t l e d T he T r a i n of L i f e , w hi c h de pi c t s one ’ s l i f e a s a t r a i n
j our ne y f ul l of a c hi e ve m e nt s a nd di f f i c ul t i e s , j oy a nd s or r ow . D ur i ng t he pr og r a m de s i gn, t he P I
s c r e e ne d a g r e a t num be r of vi de os on Y ouT ube a nd de c i de d t o us e t hi s one a s a n i ndi r e c t w a y t o
he l p t he pa r t i c i pa nt unde r s t a nd t he pr ogr a m ’ s i nt e nt i on a nd i ni t i a t e t he c onve r s a t i on. T he vi de o
ha s t r a ns c r i pt s i n t r a di t i ona l C hi ne s e a nd ha s be e n dow nl oa de d f or us e be f or e ha nd. A f t e r
w a t c hi ng t he vi de o, t he i nt e r ve nt i oni s t a s ks t he pa r t i c i pa nt i f t he y unde r s t a nd t he m e a ni ng of t hi s
vi de o. I f y e s , l i f e r e vi e w i s c onduc t e d w i t h t he pa r t i c i pa nt , w i t h que s t i ons a s ki ng a bout t he i r
ha ppy m om e nt s a f t e r r e t i r e m e nt , r e c e nt e x pe r i e nc e s of i l l ne s s or de a t h e xpe r i e nc e s of t he
pa r t i c i pa nt or t he i r l ove d one s , a nd how t he y w a nt t o be t a ke n c a r e of w he n ha vi ng phy s i c a l or
c ogni t i ve i m pa i r m e nt s . I f t he y do not unde r s t a nd t he c ont e nt of t he vi de o, t he i nt e r ve nt i oni s t
br i e f l y i l l us t r a t e s i t s m e a ni ng . T he c onve r s a t i on i s t he n be t r a ns f e r r e d t o t he r e a s ons t ha t pe opl e
16
s houl d m a ke pl a ns f or E O L c a r e .
A f t e r a 10- m i n br e a k, t he i nt e r ve nt i oni s t us e s a c a s e s c e na r i o t o e x pl a i n di f f e r e nt c a r e
c hoi c e s a t E O L , i nc l udi ng l i f e - s us t a i ni ng t r e a t m e nt , hos pi c e , a nd pa l l i a t i ve c a r e . I n t he c a s e
s c e na r i o, t he m om i s i n a c om a a nd on t he ve nt i l a t or w i t h a poor pr ognos i s . T he da ught e r doe s
not know t he m om ’ s c a r e pr e f e r e nc e s f or w he t he r or not t o ke e p he r on t he ve nt i l a t or a t t he E O L ,
r e a ddr e s s i ng t he i m por t a nc e of m a ki ng pl a ns a nd ha vi ng c onve r s a t i ons w i t h t he l ove d one s i n
a dva nc e .
T he f i r s t da y e nds w i t h t he G o W i s h c a r ds g a m e . T he G o W i s h c a r ds , de ve l ope d i n t he
U ni t e d S t a t e s , w e r e t r a ns l a t e d i nt o t r a di t i ona l C hi ne s e by t he C hi ne s e A m e r i c a n C oa l i t i on f or
C om pa s s i ona t e C a r e ( C A C C C , ht t ps : / / w w w .c a c c c - us a .or g/ ) , a n or ga ni z a t i on de di c a t e d t o
a ddr e s s i ng E O L i s s ue s a m ong C hi ne s e A m e r i c a n c om m uni t i e s by pr om ot i ng a dva nc e pl a nni ng
a nd he l pi ng t he t a r ge t popul a t i on g a i n E O L r e s our c e s . T he P I w a s g i ve n a de c k of c a r ds w he n
s e r vi ng a s a C A C C C vol unt e e r i n L o s A nge l e s .
T he s e c ond da y s t a r t s w i t h t he F i ve W i s he s . A l s o de ve l ope d i n t he U ni t e d S t a t e s , t he F i ve
W i s he s w a s t r a ns l a t e d i nt o s i m pl i f i e d C hi ne s e by t he B e i j i ng L i vi ng W i l l P r om ot i on A s s oc i a t i on
( L W P A , ht t ps : / / w w w .l w pa .or g.c n/ ) , a n or ga ni z a t i on a i m i ng t o pr om ot e l i vi ng w i l l s a nd E O L
c a r e i n C hi na . S om e c ul t ur a l r e vi s i ons t e r m s a nd e x pr e s s i ons w e r e m a de t o t he f or m . F or
e x a m pl e , L W P A r e pl a c e d t he t e r m “ he a l t h c a r e a ge nt ” w i t h “ pe opl e w ho c a n he l p m e ” , be c a us e
A D f or m s a r e not l e ga l i z e d i n C hi na . I n our pr og r a m , a c c or di ng t o t he pl a n, t he i nt e r ve nt i oni s t
g oe s t hr ough t he C hi ne s e ve r s i on of F i ve W i s he s w i t h pa r t i c i pa nt s s e c t i on by s e c t i on, a ns w e r i ng
t he i r que s t i ons a nd l i s t e ni ng t o t he i r t houg ht s a nd c om m e nt s i f a ny o ne i s w i l l i ng t o s ha r e . T he
pa r t i c i pa nt s a r e i nf or m e d t ha t , i f t he y pr e f e r , t he y c a n g o t o t he L W P A ’ s w e bs i t e t o f i l l i n a n
e l e c t r oni c ve r s i on t o be ke pt i n t he i r da t a ba s e , a nd t he i nt e r ve nt i oni s t c a n pr ovi de he l p dur i ng
17
t hi s pr oc e s s .
A f t e r t he 10- m i n br e a k, pa r t i c i pa nt s w a t c h a s hor t vi de o m a de by t he t e a m a bout how t o
i ni t i a t e a nd ha ve de a t h- r e l a t e d di s c us s i ons w i t h t he f a m i l y a nd H C P s . F or i ns t a nc e , one
s ug ge s t i on i s us i ng ot he r pe opl e ’ s ( e .g., a c e l e br i t y ’ s ) de a t h a nd dy i ng e x pe r i e nc e s a s e x a m pl e s .
F i na l l y , t he i nt e r ve nt i oni s t i nt r oduc e s C hi na W i l l R e gi s t r a t i on C e nt e r , a not he r not - f or - pr of i t
or ga ni z a t i on i n C hi na t ha t he l ps ol de r a dul t s w ho m e e t s pe c i f i c c r i t e r i a ( e .g., a nnua l i nc om e ) t o
m a ke a w i l l f or f r e e .
T he pr ogr a m e nds w i t h a Q & A s e s s i on, w i t h t he t e a m ’ s c ont a c t i nf or m a t i on l e f t i n c a s e
t he pa r t i c i pa nt w a nt s t o ha ve a not he r c ons ul t a t i on on r e l a t e d i s s ue s . T he i nt e r ve nt i oni s t w i l l
e nc our a ge t he pa r t i c i pa nt t o s ha r e t he i r g a i ns a nd t houg ht s f r om a t t e ndi ng t hi s pr ogr a m w i t h t he i r
l ove d one s be t w e e n t w o s e s s i ons a nd a f t e r t he pr ogr a m e nds .
S am p l i n g M e t h od s
H C P s a nd g e r ont ol ogi c a l r e s e a r c he r s w e r e r e c r ui t e d f r om A pr i l t o M a y 2020 t hr oug hout
C hi na , us i ng t he s now ba l l s a m pl i ng m e t hod. T he P I f i r s t a ppr oa c he d H C P s a nd r e s e a r c he r s i n
C hi na know n t o he r , a s ki ng t he m t o i nvi t e a ny o ne t ha t m e t t he c r i t e r i a a nd w a s i nt e r e s t e d i n
pa r t i c i pa t i ng i n t he i nt e r vi e w . T he P I t he n c ont a c t e d t he i nvi t e e a nd c onf i r m e d t he i r e l i g i bi l i t y
a nd w i l l i ng ne s s . T he i nc l us i on c r i t e r i a f or H C P s a nd r e s e a r c he r s w e r e : 1) 18 y e a r s or ol de r , 2)
a bi l i t y t o s pe a k a nd unde r s t a nd M a nda r i n C hi ne s e , 3) a t l e a s t t hr e e - y e a r e x pe r i e nc e of
w or ki ng/ vol unt e e r i ng w i t h pa l l i a t i ve or E O L pa t i e nt s , or c onduc t i ng r e s e a r c h i n pa l l i a t i ve c a r e or
E O L i s s ue s a m ong C hi ne s e popul a t i ons . I n i t i a l l y , s e ve n H C P s a nd t w o r e s e a r c he r s ( bot h w e r e
pr e vi ous pr a c t i t i one r s ) w e r e r e c r ui t e d. T o i nc r e a s e c ul t ur a l a da pt a t i on a nd l oc a l i z a t i on of t he
pr ogr a m , t he t e a m f ur t he r i nt e r vi e w e d t hr e e s e ni or r e s e a r c he r s i n L a nz hou, C hi na , t he c i t y w he r e
t he pr ogr a m w a s pl a nne d t o be de l i ve r e d, f or f e e dba c k on a da pt i ng t he pr ogr a m t o t he
18
popul a t i ons i n L a nz hou.
C om m uni t y - d w e l l i ng ol de r a dul t s w e r e r e c r ui t e d w i t h t he a s s i s t a nc e of t he L W P A w i t h
t he pur pos i ve s a m pl i ng m e t hod. T he i nc l us i on c r i t e r i a f or ol de r a dul t s w e r e : 1) a g e 50 y e a r s or
ol de r , 2) a bi l i t y t o s pe a k a nd unde r s t a nd M a nda r i n C hi ne s e , 3) r e s i de i n c om m uni t i e s , a nd 4)
ha ve e x pe r i e nc e of a t t e ndi ng hos pi c e vol unt e e r t r a i ni ng a nd s e r vi ng a s a hos pi c e vol unt e e r . T he
P I f i r s t c r e a t e d a r e c r ui t m e nt f l y e r a nd s e nt i t t o t he L W P A f or r e vi e w . A f t e r t ha t , L W P A pos t e d
t he f l y e r i n i t s vol unt e e r g r oup i n W e C ha t ( a C hi ne s e s oc i a l m e di a a pp) a nd i nf or m e d vol unt e e r s
t ha t t hos e i nt e r e s t e d i n pa r t i c i pa t i ng c oul d di r e c t l y c ont a c t t he P I .
D at a C ol l e c t i on
A l l i nt e r vi e w s w e r e c onduc t e d by t he P I , w ho i s a t r a i ne d s oc i a l w or ke r a nd bi l i ng ua l
g e r ont ol ogi c a l r e s e a r c he r . I n t e r vi e w s w e r e c onduc t e d i n M a nda r i n C hi ne s e us i ng t he W e C ha t
phone f unc t i on, a nd e a c h i nt e r vi e w l a s t e d f r om 1 t o 1.5 hour s . A t t he be gi nni ng of t he i nt e r vi e w ,
t he P I a ga i n de s c r i be d t he pur pos e of t he i nt e r vi e w t o t he i nt e r vi e w e e , a ns w e r e d t he i r que s t i ons ,
a nd obt a i ne d t he i r ve r ba l i nf or m e d c ons e nt t o pa r t i c i pa t e . T he n, t he P I c onduc t e d t he s e m i -
s t r uc t ur e d i nt e r vi e w w i t h a n i nt e r vi e w g ui de , w hi c h w a s de ve l ope d by t he P I a nd r e vi e w e d by a
s e ni or r e s e a r c he r i n t he t e a m ( A ppe ndi x I ) . T he i nt e r vi e w g ui de w a s f or w a r de d t o t he
i nt e r vi e w e e i n a dva nc e , t og e t he r w i t h t he pr ogr a m out l i ne ( A ppe ndi x I I ) . I n t e r vi e w e e s w e r e
a s ke d a bout t he i r w or ki ng/ vol unt e e r i ng/ r e s e a r c hi ng e x pe r i e nc e r e l a t e d t o E O L i s s ue s , t he i r
a t t i t ude s t ow a r d de a t h e duc a t i on ( e .g., c ha l l e nge s i n a nd f a c i l i t a t or s of de l i ve r i ng de a t h e duc a t i on
pr ogr a m s i n C hi na ) , a nd t he i r de t a i l e d f e e dba c k f or t he t e a m ’ s de a t h e duc a t i on pr ogr a m i n t e r m s
of i t s c ont e nt a nd de l i ve r y . E a c h i nt e r vi e w e e w a s g i ve n 50 Y ua n ( a ppr ox i m a t e l y U S $8)
e l e c t r oni c g i f t c a r d t o c om pe ns a t e f or t he i r t i m e . A l l i nt e r vi e w s w e r e a udi o- r e c or de d a nd
t r a ns c r i be d ve r ba t i m , f i r s t us i ng a n onl i ne t r a ns c r i pt i on t ool ( ht t ps : / / w w w .i f l y r e c .c om / ) a nd t he n
19
c he c ke d by a bi l i ng ua l c ol l e ge s t ude nt , w ho w a s na ï ve t o t he pr ogr a m a nd t r a i ne d by t he P I on
t he qua l i t a t i ve a na l y s i s . T he t r a ns c r i pt i on s of t w a r e ha s be e n m or e a nd m or e us e d t o i nc r e a s e t he
e f f i c i e nc y of t he t r a ns c r i bi ng pr oc e s s ( e .g., P R N e w s w i r e , 2020) .
D at a A n al ys i s
T w o c ode r s ( t he P I a nd t he t r a i ne d bi l i ng ua l c ol l e ge s t ude nt ) a dopt e d t he di r e c t e d c ont e nt
a na l y s i s de s c r i be d by H s i e h a nd S ha nnon ( 2005) t o c ode t he t r a ns c r i pt s . F i r s t , t w o c ode r s
de ve l ope d t he i ni t i a l c odi ng s c he m e i n E ng l i s h ba s e d on t he i nt e r vi e w g ui de ( i .e ., a t t i t ude s
t ow a r d de a t h e duc a t i on a nd di s c us s i on, ba r r i e r s i n c onduc t i ng de a t h e duc a t i on i n C hi na ,
f a c i l i t a t or s f or c onduc t i ng de a t h e duc a t i on i n C hi na , a nd s ug ge s t i ons f or t he c ur r e nt de a t h
e duc a t i on pr ogr a m , i nc l udi ng r e c r ui t m e nt , c ont e nt , f or m a t , e t c .) . A f t e r t ha t , t he y be g a n t o
i nde pe nde nt l y c ode t he t r a ns c r i pt s . A s ne w i nf or m a t i on e m e r ge d f r om t he t r a ns c r i pt s , t he c ode r s
he l d w e e kl y phone m e e t i ngs t o di s c us s di s a gr e e m e nt s , m odi f y t he c odi ng s c he m e , a nd c r e a t e
ne w c ode s or c a t e gor i e s . A ny r e s ol va bl e di s c r e pa nc i e s w e r e di s c us s e d w i t h a s e ni or r e s e a r c he r
on t he t e a m unt i l a f i na l de c i s i on w a s a c hi e ve d. N V i vo 12.0 s of t w a r e ( Q S R I n t e r na t i ona l ) w a s
us e d t o m a na ge a nd c ode t he da t a . T he P I pr e pa r e d quot a t i ons t o be r e por t e d i n t hi s pa pe r a nd
t r a ns l a t e d t he m i nt o E ngl i s h. T he n, a not he r c ol l e ge s t ude nt , w ho w a s a l s o na ï ve t o t he pr ogr a m ,
ba c k- t r a ns l a t e d t he E ngl i s h quot a t i ons i nt o C hi ne s e . T he P I a nd t he s t ude nt di s c us s e d t r a ns l a t i on
di s c r e pa nc i e s , a t t e m pt i ng t o f i nd m or e a c c ur a t e t e r m s a nd phr a s e s f or t he E ng l i s h ve r s i on.
R e s u l t s
A t ot a l of 12 H C P s a nd r e s e a r c he r s w e r e r e c r ui t e d. R e ga r di ng ol de r a dul t s , a t ot a l of s i x
ol de r a dul t s c ont a c t e d t he P I . A f t e r ve r ba l s c r e e ni ng, t w o di d not m e e t t he i nc l us i on c r i t e r i a : t he y
ha d not r e c e i ve d hos pi c e vol unt e e r t r a i ni ng nor ha d t he y pa r t i c i pa t e d i n a ny vol unt e e r a c t i vi t i e s .
T hus , f our ol de r a dul t s pa r t i c i pa t e d i n t he i nt e r vi e w s . T a bl e 1 de s c r i be s t he ba c kgr ound
20
i nf or m a t i on of H C P , r e s e a r c he r , a nd ol de r a dul t i nt e r vi e w e e s .
T ab l e 2
B ac kgr ou n d of I n t e r v i e w e e s
I D G e n d e r A ge R ol e an d E xp e r i e n c e
H R 1 F 34 S oc i a l w or ke r i n a s oc i a l w e l f a r e i ns t i t ut i on, 11 y r s ’
e x pe r i e nc e of w or ki ng w i t h ol de r a dul t s w i t h s e ve r e
phy s i c a l di s a bi l i t i e s , i nc l udi ng e x pe r i e nc e of c onduc t i ng
de a t h e duc a t i on i n t he i ns t i t ut i on
H R 2 F 43 N ur s e m a na ge r i n a c a nc e r hos pi t a l , 23 y r s ’ e x pe r i e nc e
of w or ki ng w i t h c a nc e r pa t i e nt s
H R 3 F 23 S oc i a l w or ke r i n a hos pi c e a ge nc y , 2 y r s ’ e x pe r i e nc e a s
a hos pi c e vol unt e e r , a nd 2 y r s ’ e xpe r i e nc e a s a hos pi c e
s oc i a l w or ke r
H R 4 M 38 P a l l i a t i ve c a r e phy s i c i a n i n a hos pi t a l , 9 y r s ’ e x pe r i e nc e
H R 5 M 41 L i c e ns e d ps y c h ol ogi c a l t he r a pi s t a nd hos pi c e vol unt e e r ,
11 y r s ’ vol unt e e r e x pe r i e nc e
H R 6 F 39 N ur s e m a na ge r i n t he onc ol ogy de pa r t m e nt of a hos pi t a l ,
21 y r s ’ e x pe r i e nc e of w or ki ng w i t h c a nc e r pa t i e nt s
H R 7 M 27 P a l l i a t i ve c a r e r e s e a r c he r a nd f or m e r pa l l i a t i ve c a r e
phy s i c i a n, 5 y r s ’ w or ki ng e x pe r i e nc e a nd one y r ’ s
r e s e a r c h e x pe r i e nc e
H R 8 F 44 F ounde r of a hos pi c e a ge nc y , 7 y r s ’ e x pe r i e nc e
H R 9 F 25 G e r ont ol ogi c a l r e s e a r c he r a nd f or m e r hos pi c e vol unt e e r ,
2 y r s ’ hos pi c e vol unt e e r e x pe r i e nc e , a nd 4 y r s ’
e x pe r i e nc e of r e s e a r c hi ng E O L i s s ue s
H R 10 F 40 S e ni or r e s e a r c he r i n L a nz hou, C hi na . R e s e a r c h a nd
t e a c hi ng f oc us e d on m e di c a l a nt hr opol ogy , i nc l udi ng
one uni t of de a t h e duc a t i on f or c ol l e ge s t ude nt s
H R 11 M 60 S e ni or r e s e a r c he r i n L a nz hou, C hi na . E x t e ns i ve r e s e a r c h
e x pe r i e nc e i n de l i ve r i ng pr ogr a m s a nd s e r vi c e s t o ol de r
a dul t s . D i r e c t or of a c om m uni t y c e nt e r f or ol de r a dul t s
H R 12 M 42 S e ni or r e s e a r c he r a nd a dm i ni s t r a t or i n L a nz hou, C hi na
f r om a n e t hni c m i nor i t y g r oup. R e s e a r c h f oc us e d on t he
s oc i ol og y of e t hni c i t y
O A 1 F 51 L W P A vol unt e e r ; f or m e r a dm i ni s t r a t or of a C ont i nui ng
C a r e R e t i r e m e nt C om m uni t y i ns t i t ut i on
O A 2 F 60 L W P A vol unt e e r a nd g ue s t s pe a ke r ; f or m e r phy s i c i a n
O A 3 F 66 L W P A vol unt e e r ; f or m e r c ol l e ge pr of e s s or
O A 4 M 62 L W P A vol unt e e r ; f or m e r c ol l e ge pr of e s s or
A m ong 12 H C P s a nd r e s e a r c he r s w ho pa r t i c i pa t e d i n t he i nt e r vi e w , t he i r a ge s r a nge d
f r om 23 t o 60 ( M e a n= 38.0, S D = 9.6) ; s e ve n ( 58.3% ) w e r e f e m a l e . T he i r dut i e s i nc l ude d g e r i a t r i c
21
s oc i a l w or ke r s , nur s e s i n c a nc e r hos pi t a l s , hos pi c e a ge nc y f ounde r , hos pi c e vol unt e e r s , pa l l i a t i ve
c a r e phy s i c i a ns , a nd g e r ont ol ogi c a l r e s e a r c he r s . A s f or f our ol de r a dul t i nt e r vi e w e e s , t he i r
a ve r a ge a ge w a s 59.8 ( S D = 5.5) , a nd t hr e e ( 75.0% ) w e r e f e m a l e .
I n t e r vi e w e e s ’ opi ni ons w e r e g r oupe d i nt o t he f ol l ow i ng c a t e gor i e s : a t t i t ude s t ow a r d de a t h
e duc a t i on a nd di s c us s i on, ba r r i e r s i n c onduc t i ng de a t h e duc a t i on i n C hi na , f a c i l i t a t or s f or
c onduc t i ng de a t h e duc a t i on i n C hi na , a nd s ug ge s t i ons f or t he c ur r e nt de a t h e duc a t i on pr ogr a m .
A t t i t u d e s t ow ar d D e at h E d u c at i on an d D e at h - R e l at e d D i s c u s s i on s
I n t e r vi e w e e s uni f or m l y e x pr e s s e d t he i r pos i t i ve a t t i t ude s t ow a r d de a t h e duc a t i on a nd
de a t h a nd dy i ng- r e l a t e d di s c us s i ons a m ong t he g e ne r a l C hi ne s e ol de r a dul t popul a t i on, s t a t i ng
t ha t i t c oul d e ns ur e one ’ s E O L w i s he s a r e f ol l ow e d a nd de c r e a s e f a m i l y c onf l i c t s . S om e be l i e ve d
i t s houl d be of f e r e d a s a n e duc a t i on f or a l l a dul t s , a s de a t h i s a n una voi da bl e r e a l i t y , a nd one
w oul d ne ve r know w ha t w oul d ha ppe n t he ne xt s e c ond. A c c or di ng t o one ol de r a dul t :
“ D e a t h e duc a t i on ha s g r e a t pot e nt i a l a nd s i g ni f i c a nc e . O f c our s e y o u w i l l e nc ount e r
di f f i c ul t i e s . I ’ m 50 y e a r s ol d, a nd I m e e t di f f i c ul t i e s w ha t e ve r I do, but y o u m us t be gi n t o
do i t . T hus y o u c a n g r a dua l l y e nha nc e i t t hr ough y o ur doi ng … W e us ua l l y r e a d t hi s ki nd
of s t or y a bout l i f e a nd de a t h, or t hi s ki nd of a c c i de nt , a nd t he n e ve r y o ne s i g hs , but t he n
pe opl e w oul d do, oh, I ’ m g oi ng t o buy a ba g t oda y , i n c a s e i t ’ s g one t om or r ow … but
s houl dn ’ t w e a l s o t hi nk a bout w ha t t o do i n c a s e of de a t h a nd dy i ng of our ow n? …
P e opl e s houl d be gi n t o m a ke t he a r r a nge m e nt , a t l e a s t t hi nk a bout i t , a nd s l ow l y m a ke
pl a ns t o a voi d or de c r e a s e t he l os s . ” ( O A 1)
A c c or di ng t o a n H C P :
“ H a vi ng a l i vi ng w i l l f or m s i g ne d i s g ood, e s pe c i a l l y f or t he c hi l dr e n, or t he c a r e gi ve r s ,
22
w ho m i g ht ha ve c ont r a di c t or y opi ni ons . S om e c hi l dr e n do not w a nt t o s t op t he ol de r
a dul t ’ s t r e a t m e nt be c a us e of l ove , but t he y know a ny t r e a t m e nt i s f ut i l e a t t ha t m om e nt ,
a nd i t i s a l s o a w a s t e of m one y . I f t he y c hoos e not t o c ont i nue t he t r e a t m e nt , I w oul d
a l w a y s s a y t o t he m t ha t t he y ha ve done t he i r be s t , a nd t he c ur r e nt de c i s i on i s t o he l p t he
ol de r a dul t , not t o l e a ve hi m / he r una t t e nde d. S o y e a h, a l i vi ng w i l l c oul d be ne f i t t he
i ndi vi dua l , t he f a m i l y , a nd s oc i e t y i n t e r m s of s a vi ng r e s our c e s . ” ( H R 2)
B ar r i e r s i n C on d u c t i n g D e at h E d u c at i on an d H avi n g D e at h - R e l at e d D i s c u s s i on s
I n t e r vi e w e e s a dm i t t e d t ha t de a t h e duc a t i on i s c ha l l e ngi ng t o de l i ve r due t o m ul t i pl e
ba r r i e r s on t he m i c r o, m e z z o, a nd m a c r o l e ve l s .
M i c r o L e v e l : D e at h T aboo
I n t e r vi e w e e s s t a t e d t ha t m a ny C hi ne s e s t i l l be l i e ve t a l ki ng or t hi nki ng a bout de a t h i s
da nge r ous a nd unl uc ky , w hi c h m i g ht i nhi bi t t he m f r om a t t e ndi ng de a t h e duc a t i on pr ogr a m s or
ha vi ng s uc h di s c us s i ons . A c c or di ng t o one H C P :
“ E ve n a t t he e nd of l i f e , pe opl e w oul d s t i l l ha ve a s t r ong de s i r e t o s ur vi ve . F r om t he
pe r s pe c t i ve of C hi ne s e c ul t ur e , t he y m i g ht t hi nk t ha t de a t h w i l l ha ppe n onc e t he y t a l k
a bout i t . ” ( H R 1)
A not he r H C P s a i d:
“ I t i s t oug h t o do de a t h e duc a t i on i n t he l a r ge e nvi r onm e nt of C hi na . L e t m e g i ve y o u a n
e x a m pl e . O nc e a vol unt e e r c a l l e d m y hom e . I w a s not t he r e , a nd m y m om a ns w e r e d t he
phone . T he vol unt e e r t ol d he r t o i nf or m m e t ha t I w a s i nvi t e d t o do s om e hos pi c e
vol unt e e r t r a i ni ng a t a uni ve r s i t y . M y m om be c a m e f ur i ous a f t e r l i s t e ni ng t o i t , a nd a f t e r I
got hom e , s he y e l l e d a t m e , s a y i ng w ha t I ha d be e n doi n g w a s om i n ous t o t he f a m i l y. S e e ?
23
I ha ve be e n doi ng t hi s f or a w hi l e , but a t t he be gi nni ng , I ha d t o hi de i t f r om m y ow n
f a m i l y , a nd t he r e i s a pr a c t i c a l r e a s on f or t ha t . ” ( H R 5)
E ve n i f a n ol de r a dul t w a nt s t o i ni t i a t e de a t h- r e l a t e d di s c us s i ons , f a m i l y m e m be r s c oul d
be unw i l l i ng t o ha ve s uc h c onve r s a t i ons or f ol l ow t he ol de r a dul t ’ s w i s he s . A s one ol de r a dul t
s a i d:
“ M y m om w r ot e dow n he r E O L w i s he s a t t he a ge of 80. O nc e s he t ol d us ( f our c hi l dr e n)
a bout i t . A t t ha t t i m e , w e c oul d not a c c e pt i t , s a y i ng, w ha t a r e y o u doi ng ? Y ou a r e not
g oi ng t o di e , m om . Y e a h, a t t ha t t i m e , w e c oul d not a c c e pt t ha t … S he ha d s e ve r a l w i s he s ,
s uc h a s not s t a y i ng i n t he I C U a nd not us i ng t he l i f e - s us t a i ni ng t r e a t m e nt . B ut w he n s he
w a s a c t ua l l y i n t he hos pi t a l , t he doc t or s a i d w e s houl d g i ve he r t he f e e di ng t ube a nd t he
I V , s o w e di d … S he w a s a ve r y g e nt l e pe r s on; how e ve r , s he t or e of f t he I V a f t e r s he
w oke up a nd l ooke d a t us a ngr i l y . S he c oul d not s pe a k a ny m or e , but I t hi nk s he ha t e d us
f or not l i s t e ni ng t o he r . W e g ot c onf us e d, l i ke , s houl d w e l i s t e n t o t he doc t or or our m om ?
T he n w e di s c us s e d w i t h our c hi l dr e n. T he y w e r e bor n i n t he 1970s a nd 1980s , a nd t he y
a l l s a i d w e s houl d r e s pe c t he r w i s he s t ha t s he m a de c l e a r w he n s he w a s c ons c i ous .
A l t houg h s he be c a m e c onf us e d, w e s houl d ne ve r g o a ga i ns t he r or i gi na l w i s he s . W ha t
our c hi l dr e n s a i d w oke us up, y o u know ? N ow I be l i e ve t hi s i s t he r i g ht w a y t o t hi nk, a nd
t he g r e a t e s t l ove t o s om e one i s t he r e s pe c t w e c a n s how t o t he m . ” ( O A 3)
B e c a us e of t he de a t h t a boo, s om e H C P s a r e t he one s t ha t a r e unc om f or t a bl e w i t h a nd
uns uppor t i ve of s uc h e duc a t i on a nd di s c us s i on, m a ki ng t he de l i ve r y e ve n ha r de r . O ne H C P s a i d:
“ W he n I w a nt e d t o do t he de a t h e duc a t i on f or r e s i de nt s i n m y nur s i ng hom e a nd pos t e d
24
t he f l y e r s , s om e doc t or s a nd nur s e s s a i d t ha t , do y o u r e a l l y da r e t o do s uc h a n a c t i vi t y ? ...
S om e e ve n m oc ke d m e , s a y i ng no one w oul d e ve r w a nt t o c om e t o m y a c t i vi t y . ” ( H R 1)
M i c r o L e v e l : L ac k of K n ow l e dge
A n ot he r c ha l l e nge i s unf a m i l i a r i t y or m i s c onc e pt i ons w i t h E O L c a r e a nd s om e r e l a t e d
t e r m s a m ong H C P s a s w e l l a s t he g e ne r a l popul a t i on. O ne ol de r a dul t s a i d:
“ T he ke y w o r d f or m e i s a dvoc a c y : t o a dvoc a t e f or de a t h e duc a t i on, hos pi c e c a r e , a nd
l i vi ng w i l l s i n s oc i e t y . T o be hone s t , m os t pe opl e a r ound m e do not unde r s t a nd t he s e
c onc e pt s … S om e pe opl e a s ke d m e w he t he r hos pi c e i s t he s a m e a s e ut ha na s i a , a nd I ha d
t o e x pl a i n a nd t ol d t he m t ha t t he y w e r e w r ong. ” ( O A 4)
O ne r e s e a r c he r s a i d:
“ R e ga r di ng hos pi c e , not t oo m a ny pe opl e ha ve done t he pr a c t i c e , a nd m a ny H C P s l a c k
s uc h know l e dge a nd s ki l l s . A l t houg h t he r e i s s om e a t t e nt i on now , do H C P s r e a l l y
unde r s t a nd t he not i on? I t s m a i n i de a i s t o s w i t c h f r om c ur e t o c a r e , but I don’ t t hi nk
m e di c a l s t a f f unde r s t a nds t hi s , e s pe c i a l l y t hos e w or ki ng i n l a r ge a nd bus y hos pi t a l s w he r e
pe opl e t e nd t o f oc us on c ur i ng. ” ( H R 10)
M e z z o L e v e l : H e al t h C ar e A ge n c i e s L ac ki n g R e s ou r c e s
O n t he m e z z o l e ve l , a l t houg h s om e or ga ni z a t i ons , e s pe c i a l l y hos pi c e a g e nc i e s , w a nt t o do
m or e de a t h e duc a t i on a nd pr ovi de be t t e r E O L c a r e s e r vi c e s , t he y ha ve e nc ount e r e d di f f i c ul t i e s
due t o a s i g ni f i c a nt l a c k of r e s our c e s , i nc l udi ng f undi ng a nd hum a n r e s our c e s . T he f ounde r of a
hos pi c e a ge nc y s a i d:
“ T he c om m uni t y l e c t ur e s f or ol de r a dul t s ha ve be e n f unde d t op- dow n. I n ot he r w or ds , i f ,
i n a y e a r , t he g ove r nm e nt a l l oc a t e s t he m one y f or us t o de l i ve r l e c t ur e s i n c e r t a i n
25
c om m uni t i e s , w e w i l l de l i ve r t he m t o t he s e s pe c i f i c c om m uni t i e s . H ow e ve r a c t ua l l y , t hi s
pr ogr a m ha s s t oppe d s i nc e 2019 be c a us e t he g ove r nm e nt di d not pr ovi de t he f undi ng. I
j us t w e nt t o t he C i vi l A f f a i r s B ur e a u l a s t w e e k, a nd a ga i n t he y s a i d t he r e w oul d be no
f undi ng f or t hi s y e a r . A l t houg h I ha ve be e n w or ki ng on t hi s f or s o m a ny y e a r s , i t w i l l
l i ke l y be g one i n a n i ns t a nc e . ” ( H R 8)
A not he r r e s e a r c he r poi nt e d out t he l ow s a l a r y t ha t pe opl e w or ki ng i n t he E O L c a r e f i e l d
r e c e i ve i n C hi na :
“ T he m a i n i s s ue i s m one y . F or t hos e w ho pr ovi de hos pi c e c a r e , i f t he i r s a l a r y i s hi g he r ,
or a t l e a s t hi g h e nough, m or e pe opl e w i l l s t a y , a nd t he qua l i t y of s e r vi c e w i l l be
e nha nc e d … T he y ne e d t o l i ve w e l l e nough t o put e x t r a e ne r gy t o pr om ot e t he c a us e ,
pr ovi de c a r e , a nd m a i nt a i n t he i r e nt hus i a s m . O t he r w i s e , a l t houg h w i t h e nt hus i a s m , i f one
ha s be e n doi ng i t f or m a ny m a ny y e a r s but s t i l l c a n ’ t s uppor t t he f a m i l y , t he y w i l l
e ve nt ua l l y l e a ve t hi s f i e l d. ” ( H R 9)
A ddi t i ona l l y , due t o t he l a c k of r e s our c e s a nd ot he r pos s i bl e r e a s ons , H C P s s t a t e d t ha t ,
a l t houg h de a t h e duc a t i on w oul d i nc r e a s e pe opl e ’ s a w a r e ne s s t o di s c us s a nd e ve n doc um e nt t he i r
E O L w i s he s , t he s e w i s he s m i g ht not be f ul l y a c hi e ve d i n he a l t h c a r e a ge nc i e s . E s pe c i a l l y w i t h
r e ga r ds t o s pi r i t ua l c a r e : m a ny a ge nc i e s c oul d not pr ovi de s uc h c a r e be c a us e a m ul t i di s c i pl i na r y
t e a m doe s not e x i s t . T w o i nt e r vi e w e e s s t a t e d:
“ I f e e l , e ve n i n B e i j i ng, E O L c a r e c a nnot be pr ovi de d i de a l l y … A pa t i e nt m i g ht s a y t ha t
s i nc e he f i l l e d out t he l i vi ng w i l l , m y a ge nc y w oul d ha ve a n obl i g a t i on t o a c hi e ve t he
w i s he s . I be l i e ve t hi s i s a n e xc e l l e nt doc um e nt t o e x pr e s s t he i r w i s he s , but i n r e a l i t y , i s i t
26
t oug h t o pr ovi de s uc h c a r e a nd s e r vi c e , a t l e a s t i n m y a ge nc y . ” ( H R 1)
“ I n ot he r c ount r i e s , a n E O L t e a m i nc l ude s di e t i t i a ns , ps y c h ol ogi s t s , s oc i a l w or ke r s , a nd
vol unt e e r s , be s i de s phy s i c i a ns a nd nur s e s . O h, i n C hi na , w e do ha ve vol unt e e r s ; I know
t hi s . H ow e ve r , w e l a c k s pi r i t ua l c a r e , w hi c h i s a n e s s e nt i a l pa r t of E O L c a r e . ” ( H R 10)
M e z z o L e v e l : A ge n c i e s N ot A bl e t o M ai n t ai n V ol u n t e e r s
A s m e nt i one d by H C P 12, vol unt e e r s , m os t l y uni ve r s i t y s t ude nt s , ha ve be e n i nt e ns e l y
i nvol ve d i n hos pi c e c a r e i n C hi na . H ow e ve r , i nt e r vi e w e e s a l s o e x pr e s s e d c onc e r ns a bout t he
s us t a i nm e nt of us i ng vol unt e e r s i f no pa r t ne r s hi p i s bui l t w i t h uni ve r s i t i e s . O ne H C P s a i d:
“ V ol unt e e r s a r e vi t a l t o m y a ge nc y . I t hi nk w e ’ d be t t e r e s t a bl i s h a l ong - t e r m r e l a t i ons hi p
w i t h t he uni ve r s i t y , a nd t hus w e c a n ha ve m e di c a l s t ude nt s c om e he r e t o do vol unt e e r
w or k or i nt e r ns hi ps . M a ny pe opl e do not know t ha t w e r e c r ui t s t ude nt vol unt e e r s . W e l l ,
i nde e d, our a dve r t i s i ng a nd pr om ot i on i s not e noug h, w hi c h i s a l s o a pr obl e m . ” ( H R 3)
M ac r o L e v e l : N ot H av i n g a L e gal D oc u m e n t f or O n e ’ s W i s h e s
A l i vi ng w i l l or ot he r A D f or m s do not ha ve l e ga l i m pl i c a t i ons i n C hi na , m a ki ng pe opl e
que s t i on t he us e f ul ne s s of de a t h- r e l a t e d di s c us s i ons w i t h ol de r a dul t s . H ow e ve r , i nt e r vi e w e e s
e x pr e s s e d t he i r pos i t i vi t y t ow a r ds t hi s i s s ue , hopi ng t o a dva nc e i t s l e g a l i z a t i on pr oc e s s by t he i r
a dvoc a c y a nd pr a c t i c e . O ne ol de r a dul t s a i d:
“ P e opl e w oul d a s k m e , doe s t he c ount r y r e c ogni z e i t ( t he l i vi ng w i l l ) ? T hi s i s a ve r y r e a l
pr obl e m . I t ol d t he m t ha t i t i s not l e g a l i z e d, a nd w ha t I ’ m doi ng i s j us t a dvoc a t i ng f or i t . I
s a i d t o t he m t ha t t hi s f or m w a s de ve l ope d i n t he U ni t e d S t a t e s , a nd i t i s i m pos s i bl e t o
m a ke i t l e ga l i z e d i m m e di a t e l y a f t e r s om e one us e s i t i n C hi na . T he r e ne e ds a pr oc e s s i n
w hi c h t he g e ne r a l publ i c g e t s t o know i t a nd unde r s t a nds i t s i m por t a nc e a nd us e f ul ne s s ,
27
r i ght ? ” ( O A 4)
A not he r i nt e r vi e w e e s a i d:
“ L a w s ha ve l i m i t a t i ons , t oo. I f a l a w ha s l i m i t a t i ons , i s n ’ t i t nor m a l f or a l i vi ng w i l l t o
ha ve l i m i t a t i ons ? L e t ’ s do i t w i t h a n ope n m i nd. I f out of 10 pe opl e , f i ve a gr e e w i t h us
a nd f i l l out t he l i vi ng w i l l , w e ha ve a l r e a dy done a g r e a t j ob. ” ( O A 1)
F ac i l i t at or s of C on d u c t i n g D e at h E d u c at i on an d D e at h - R e l at e d D i s c u s s i on s
S oc i e t y B e i n g M or e O pe n - M i n de d & H i gh e r E du c at i on
I n t e r vi e w e e s a l s o be l i e ve d t ha t i t w oul d be c om e e a s i e r t o c onduc t de a t h e duc a t i on a s
s oc i e t y be c om e s m or e a nd m or e ope n- m i nde d a nd m or e pe opl e a r e g e t t i ng hi g he r e duc a t i on.
T hr e e i nt e r vi e w e e s s a i d:
“ A s pe opl e a r e be c om i ng m or e e duc a t e d, t he y w i l l be m or e ope n t o de a t h- r e l a t e d t opi c s ,
not be l i e vi ng i n t he de a t h t a boo or s om e s upe r s t i t i ons a s pe opl e di d be f or e . Y oung pe opl e
a r e m uc h m or e ope n- m i nde d t ha n ol de r g e ne r a t i ons . ” ( O A 1)
“ S oc i e t y i s m or e ope n now , a nd w i t h t e c hnol ogy , s uc h a s t he i nt e r ne t , i t i s e a s y f or
pe opl e t o r e c e i ve ne w i nf or m a t i on. ” ( H R 9)
“ W he ne ve r I a t t e nde d ( hos pi c e ) vol unt e e r t r a i ni ng or di d t he vol unt e e r w or k, I c oul d s e e
t ha t H C P s a nd c ol l e ge pr of e s s or s a r e t he t w o bi g ge s t g r oups i nvol ve d i n t hi s c a us e . ”
( O A 4)
R e l e v an t E xpe r i e n c e
F or ol de r a dul t s , r e l e va nt de a t h a nd dy i ng e x pe r i e nc e of pe opl e c l os e t o t he m m i g ht
28
e nc our a ge t he m t o t hi nk a bout m a ki ng pl a ns f or t he m s e l ve s a nd i nf l ue nc e t he m t o be m or e
a c c e pt i ng of de a t h e duc a t i on a nd di s c us s i ons . O ne ol de r a dul t s a i d:
“ I t hi nk de a t h e duc a t i on f or c om m uni t y - dw e l l i ng ol de r a dul t s i s pos s i bl e . E s pe c i a l l y i f
t he y ha ve l os t t he i r s pous e or f r i e nds , I be l i e ve t he y a r e w i l l i ng t o t hi nk a bout or di s c us s
m a ki ng pl a ns f or t he m s e l ve s . I t hi nk a s pe opl e a ge , m a ny of t he m ha ve c e r t a i nl y t houg ht
a bout de a t h- r e l a t e d i s s ue s . I t m i g ht j us t be t ha t no one i s t he r e t o ha ve s uc h c onve r s a t i ons
w i t h t he m . ” ( O A 3)
R i t u al s , R e l i gi on , an d S pi r i t u al i t y
I n t e r vi e w e e s ha d t he f e e l i ng t ha t i t w a s e a s i e r t o ha ve de a t h- r e l a t e d di s c us s i ons w i t h
pe opl e w ho ha ve r e l i gi ous a f f i l i a t i ons or c e r t a i n r i t ua l s i n t he i r hom e t ow n. O ne r e s e a r c he r s a i d:
“ I n m y c l a s s , I di s c us s e d w i t h m y s t ude nt s w he t he r t he r e i s a s oul a f t e r de a t h a nd s om e
ot he r t opi c s . S om e of m y s t ude nt s a r e M us l i m s , a nd s om e a r e C hr i s t i a ns , a nd i t w a s
e a s i e r t o di s c us s de a t h w i t h t he m . O n t he c ont r a r y , m a ny s t ude nt s a r e a t he i s t s , a nd i t
w a s n ’ t e a s y t o ha ve s uc h di s c us s i ons w i t h t he m … I n m y hom e t ow n, f a m i l y m e m be r s w i l l
he l p a n ol de r a dul t t o pr e pa r e a c of f i n a nd s hr oud w he n t he y a r e s t i l l a l i ve . T hi s i s a w a y
f or pe opl e t o be c om e ps y c hol ogi c a l l y pr e pa r e d f or de a t h a nd dy i ng. I n a r e a s of H a n
e t hni c i t y , I t hi nk de a t h pr e pa r a t i on i s m a ni f e s t e d t hr oug h r i t ua l s l i ke t hi s . ” ( H R 12)
S u gge s t i on s f or “M y L i f e , M y Wi s h e s ” D e at h E d u c at i on P r ogr am
I n t e r vi e w e e s pr ovi de d de t a i l e d f e e dba c k f or t he pr ogr a m c ont e nt a nd de l i ve r y ( T a bl e 2)
i n t e r m s of r e c r ui t m e nt , pr e pa r a t i on, r e l a t i ons hi p bui l di ng be f or e de l i ve r i ng t he pr ogr a m ,
l a ngua ge a nd t e r m s , c ont e nt a nd f or m a t , a nd l e ngt h of t he pr ogr a m . T he y a l s o of f e r e d
s ug ge s t i ons f or f ut ur e de a t h e duc a t i on pr ogr a m s i n C hi na , s uc h a s pos s i bl e t a r ge t popul a t i ons
( e .g., ol de r a dul t s l i vi ng a l one , c oupl e s , H C P ) , vol unt e e r m a na ge m e nt , a nd g r e a t e r s uppor t
29
ne e de d f r om m a na ge m e nt pe opl e of he a l t h c a r e a ge nc i e s , c om m uni t y or ga ni z a t i ons , t he
g ove r nm e nt , a nd s oc i e t y a s a w hol e .
T ab l e 3
F e e dbac k f or D e at h E du c at i on P r ogr am
S t a g e C a t e g o r y S u g g e s t i o n s
B e f o r e t h e
p r o g r a m
1 . R e c r u i t m e n t 1 . 1 C o l l a b o r a t e w i t h c o m m u n i t y o r g a n i z a t i o n s .
1 . 2 F i n d t h e s o c i a l c i r c l e s , e . g . , s e n i o r t r a v e l c l u b s .
1 . 3 R e c r u i t t h r o u g h m e s s a g i n g a n d s o c i a l m e d i a a p p a n d
s n o w b a l l s a m p l i n g .
1 . 4 M a k e i t a s e r i e s o f l e c t u r e s a n d i n c l u d e t o p i c s
a t t r a c t i v e t o o l d e r a d u l t s ( e . g . , h e a l t h m a i n t e n a n c e ) , a n d
s a v e t h e d e a t h e d u c a t i o n a s t h e f i n a l l e c t u r e .
2 . P r e p a r a t i o n 2 . 1 U n d e r s t a n d t h e p o p u l a t i o n ’ s b a c k g r o u n d , e . g . ,
e d u c a t i o n l e v e l , r e l i g i o n
2 . 2 M a k e t h e s e t t i n g c o m f o r t a b l e , s u c h a s u s i n g a n a r o m a
d i f f u s e r .
2 . 3 P r e p a r e m a t e r i a l s , i n c l u d i n g s i g n - u p s h e e t s , s m a l l
g i f t s , p a p e r , a n d p e n , e t c .
3 . R e l a t i o n s h i p
b u i l d i n g
3 . 1 B u i l d a t r u s t i n g r e l a t i o n s h i p w i t h t h e o l d e r a d u l t
p a r t i c i p a n t b e f o r e d i s c u s s i n g d e a t h - r e l a t e d i s s u e s .
D u r i n g t h e
p r o g r a m
4 . L a n g u a g e 4 . 1 D o n o t u s e h e a v y t e r m s s u c h a s d e a t h . R e p h r a s e t h e
d e a t h e d u c a t i o n a s l i f e c a r e e d u c a t i o n .
4 . 2 D o n o t u s e m e d i c a l j a r g o n .
5 . C o n t e n t 5 . 1 C u s t o m i z e c o n t e n t f o r d i f f e r e n t g r o u p s o f p e o p l e ,
s u c h a s b a s e d o n t h e i r e d u c a t i o n l e v e l s .
5 . 2 P a y a t t e n t i o n t o r e l i g i o n . D o n o t d i s c u s s d i s r e s p e c t f u l
t o p i c s .
5 . 3 P r o v i d e a l i s t o f a v a i l a b l e r e g i o n a l a n d n a t i o n a l o l d e r
a d u l t a g e n c i e s a n d s e r v i c e s .
6 . F o r m a t 6 . 1 U s e v a r i o u s f o r m a t s t o i n c r e a s e i n t e r a c t i o n s , s u c h a s
v i d e o s , r e a l - l i f e s t o r i e s , g a m e s , e t c .
6 . 2 P r e f e r t o c o n d u c t t h e p r o g r a m i n - p e r s o n s o a s t o
a n s w e r q u e s t i o n s a n d d e c r e a s e t h e p a r t i c i p a n t ’ s
c o n f u s i o n s o n t h e s p o t a n d t o i n c r e a s e t h e p e r s o n a l
c o n n e c t i o n b e t w e e n t h e i n t e r v e n t i o n i s t a n d t h e
p a r t i c i p a n t .
6 . 3 E i t h e r t h e i n d i v i d u a l o r g r o u p f o r m a t i s a c c e p t a b l e . I f
u s i n g g r o u p f o r m a t , l i m i t t h e n u m b e r o f p a r t i c i p a n t s i n
e a c h g r o u p t o l e t e v e r y o n e s p e a k .
7 . L e n g t h 7 . 1 B e t t e r k e e p e a c h s e s s i o n w i t h i n 9 0 m i n , w i t h a b r e a k
i n t h e m i d d l e , t o k e e p t h e p a r t i c i p a n t c o n c e n t r a t e d a n d
a t t e n d t o t h e i r r e s t r o o m n e e d s .
30
7 . 2 C o n t r o l t h e t i m e f o r e a c h a c t i v i t y , e s p e c i a l l y t h e l i f e
r e v i e w w i t h t h e p a r t i c i p a n t .
F o r f u t u r e
p r o g r a m s
8 . T a r g e t
p o p u l a t i o n s
I n t h e f u t u r e , c o n s i d e r p r o v i d i n g d e a t h e d u c a t i o n t o :
8 . 1 O l d e r a d u l t s l i v i n g a l o n e , o r t h o s e w h o s e o n l y c h i l d
h a s p a s s e d a w a y .
8 . 2 C o u p l e s a t t e n d i n g t h e p r o g r a m t o g e t h e r .
8 . 3 H e a l t h c a r e a g e n c y s t a f f m e m b e r s .
9 . V o l u n t e e r
m a n a g e m e n t
I f u s i n g v o l u n t e e r s f o r d e a t h e d u c a t i o n , m a k e s u r e t o :
9 . 1 S e t s t a n d a r d s f o r v o l u n t e e r r e c r u i t m e n t a n d t r a i n i n g .
9 . 2 E n h a n c e v o l u n t e e r s ’ s e n s e o f a c h i e v e m e n t .
9 . 3 H o s p i c e v o l u n t e e r s a r e p r e c i o u s , s o d o n o t l o s e t h e
c o n n e c t i o n e v e n i f t h e y m o v e t o a n o t h e r c i t y . H a v e a
v o l u n t e e r c o o r d i n a t o r c h e c k i n o n t h e m n o w a n d t h e n t o
m a i n t a i n t h e i r e n t h u s i a s m .
1 0 . G e n e r a l
s u p p o r t
O n t h e m a c r o l e v e l , i f r e s e a r c h e r s a n d p r a c t i t i o n e r s w a n t
t o a d v a n c e t h e d e a t h e d u c a t i o n a n d t h e E O L c a r e c a u s e ,
g r e a t e r s u p p o r t i s n e e d e d f r o m t h e h e a l t h c a r e a g e n c i e s ’
m a n a g e m e n t p e o p l e , c o m m u n i t y o r g a n i z a t i o n s , t h e
g o v e r n m e n t , a n d s o c i e t y a s a w h o l e .
D i s c u s s i on
I n t hi s pa pe r , w e r e por t e d t he e x pe r t s ’ ( i .e ., C hi ne s e H C P s , g e r i a t r i c r e s e a r c he r s , a nd
c om m uni t y - dw e l l i ng ol de r a dul t s w ho a r e know l e dge a bl e w i t h t he s ubj e c t m a t t e r ) a t t i t ude s t o
a nd s ug ge s t i ons f or c onduc t i ng de a t h e duc a t i on a nd de a t h- r e l a t e d di s c us s i ons i n C hi na , us i ng i n-
de pt h, s e m i - s t r uc t ur e d i nt e r vi e w s . O ve r a l l , t he y he l d a pos i t i ve a t t i t ude t ow a r d de a t h e duc a t i on
f or t he C hi ne s e g e ne r a l publ i c ; how e ve r , g r e a t c ha l l e nge s e x i s t on m i c r o, m e z z o, a nd m a c r o
l e ve l s , ba s e d on t he i r r e s e a r c h, pr a c t i c e , a nd vol unt e e r e x pe r i e nc e s . A ddi t i ona l l y , t he e x pe r t s
pr ovi de d de t a i l e d f e e dba c k f or t he t e a m ’ s de a t h e duc a t i on pr ogr a m , a nd w e m a de r e vi s i ons
a c c or di ngl y , w hi c h w i l l be di s c us s e d be l ow .
D e a t h t a boo i s s t i l l one of t he e x pe r t s ’ bi g ge s t c onc e r ns t ha t i m pe de t he de l i ve r y of de a t h
e duc a t i ons t o t he C hi ne s e publ i c . B a s e d on our l i t e r a t ur e r e vi e w , de a t h e duc a t i on ha s be e n
g r a dua l l y a dde d a s c om pul s or y t r a i ni ng f or s t ude nt s i n m a ny m e di c a l s c hool s . H ow e ve r , H C P s ’
uns uppor t i ve a t t i t ude s f or de a t h- r e l a t e d di s c us s i ons w e r e m e nt i one d by our H C P i nt e r vi e w e e s
31
w ho w a nt e d t o i ni t i a t e de a t h e duc a t i on pr og r a m s i n t he i r i ns t i t ut i ons . T hi s i s not e w or t hy be c a us e
H C P s , e s pe c i a l l y phy s i c i a ns , a r e vi e w e d a s a ut hor i t i e s i n C hi na , a nd t he i r opi ni ons f or t r e a t m e nt
a nd c a r e g r e a t l y i m pa c t t he m e di c a l c hoi c e s of a n i ndi vi dua l a nd t he i r f a m i l y ( X u e t a l ., 2020) .
H C P ’ s unw i l l i ng ne s s t o ha ve de a t h- r e l a t e d di s c us s i ons m i g ht i nf l ue nc e t he i r pa t i e nt s ’ a t t i t ude s
t ow a r d de a t h a nd dy i ng a nd t hus de l a y or a voi d s uc h c onve r s a t i ons , e s pe c i a l l y f or t hos e t ha t
a dva nc e pl a nni ng i s ne c e s s a r y a nd ur ge nt . O n t he ot he r ha nd, i t c oul d a l s o be t he l a c k of de a t h
know l e dge a nd E O L c a r e s ki l l s t ha t pr e ve nt e d s om e H C P s f r om be i ng pa r t of t he de a t h
e duc a t i on c a m pi on. I n a pr e vi ous s t udy a m ong C hi ne s e m e di c a l s t ude nt s , m or e t ha n ha l f ha d
di f f i c ul t i e s c opi ng w i t h dy i ng pa t i e nt s a nd t he i r f a m i l i e s i n t he i r c l i ni c a l pr a c t i c e ; m or e t ha n 96%
f e l t i t w a s ne c e s s a r y or e x t r e m e l y ne c e s s a r y f or m e di c a l s t ude nt s t o a t t e nd de a t h e duc a t i on ( F a n
e t a l ., 2020) . T hi s s uppor t s t he ne e d f or de a t h e duc a t i on t o be pr ovi de d f or m e di c a l s t ude nt s a nd
H C P s t hr oughout t he i r e duc a t i on a nd pr a c t i c e , de c r e a s i ng t he i r de a t h a nx i e t y a nd a dva nc i ng t he
de a t h e duc a t i on c a m pi on i n s oc i e t y ut i l i z i ng t he i r a ut hor i t y .
O n t he m e z z o l e ve l , c ons i s t e nt w i t h f i ndi ng s f r om pr e vi ous r e s e a r c h, hos pi c e a ge nc i e s i n
C hi na f a c e c ha l l e nge s of unde r f undi ng a nd unde r s t a f f i ng ( D u e t a l ., 2014) , w hi c h s i g ni f i c a nt l y
l i m i t e d t he i r c a pa bi l i t i e s t o c onduc t de a t h e duc a t i on a nd pr ovi de E O L s e r vi c e s . O ne i s s ue i s t he i r
l i m i t e d s our c e of f undi ng: t he y r e l y l a r ge l y on t he g ove r nm e nt t o pr ovi de f i na nc i ng f or
s us t a i ni ng t he i r pr ogr a m s , a nd w he n t he g ove r nm e nt de c r e a s e s t h e r e s our c e s , t he a ge nc y
e x pe r i e nc e s f i na nc i a l di f f i c ul t i e s . I n t he U ni t e d S t a t e s , hos pi c e a nd A C P c a n be r e i m bur s e d by
M e di c a r e a nd ot he r i ns ur a nc e s ( C e nt e r s f or M e di c a r e a nd M e di c a i d S e r vi c e s , 2020) . W hi l e i n
C hi na , a pa t i e nt c a n s t a y i n t he hos pi t a l f or a t ot a l of 90 da y s w i t h r e i m bur s e m e nt f r om he a l t h
i ns ur a nc e , w hi c h m i g ht be f a r f r om e nough f or E O L pa t i e nt s w ho ne e d m ul t i - di m e ns i ona l c a r e .
O nc e t he pa t i e nt i s di s c ha r ge d a nd t r a ns f e r r e d ba c k hom e , E O L s e r vi c e s w i l l no l ong e r be
32
r e i m bur s e d by t he i ns ur a nc e ( D u e t a l ., 2014) . T hi s pl a c e s a n e x t r a bur de n on t he l i m i t e d num be r
of hos pi c e a ge nc i e s i n C hi na t ha t do not ha ve t he g ove r nm e nt ’ s f undi ng. E x pl or i ng m ul t i pl e
f undi ng s our c e s i s a m us t f or hos pi c e a ge nc i e s a nd ot he r or ga ni z a t i ons t ha t w a nt t o pr om ot e
de a t h e duc a t i on a nd c onduc t c om m uni t y out r e a c h i n a br oa de r s c ope s us t a i na bl y .
R e ga r di ng unde r s t a f f i ng, i t i s c l e a r t ha t m or e H C P s s houl d be e nc our a ge d t o j oi n t he
de a t h e duc a t i on c a m pa i gn. W hi l e on t he ot he r ha nd, our i nt e r vi e w e e s f r e que nt l y m e nt i one d
hos pi c e vol unt e e r s w ho ha ve c ont r i but e d i ne s t i m a bl e a nd unr e pl a c e a bl e w or t h f or de a t h
e duc a t i on i n C hi na . A t w o- f ol d c ha l l e nge e x i s t s ba s e d on t he i r e x pe r i e nc e s : t o r e c r ui t e nough
vol unt e e r s a nd t o m a i nt a i n t he i r c om m i t m e nt a nd e nt hus i a s m i n t he i r vol unt e e r w or k. O ne
i nt e r vi e w e e ’ s s ug ge s t i on m i g ht s he d l i g ht on s ol vi ng t hi s i s s ue : t o bui l d a pa r t ne r s hi p w i t h
m e di c a l s c hool s a nd m ot i va t e m or e m e di c a l a nd nur s i ng s t ude nt s t o vol unt e e r or i nt e r n a t l oc a l
hos pi c e a ge nc i e s . W hi l e f or t he g e ne r a l publ i c , w e hope t o s e e m or e or ga ni z a t i ons l i ke L W P A
t ha t r e c r ui t vol unt e e r s t o pr om ot e de a t h e duc a t i on a nd a dva nc e pl a nni ng i n bot h hos pi t a l s a nd
c om m uni t i e s . O t he r s ug ge s t i ons pr ovi de d by our i nt e r vi e w e e s i nc l ude e nha nc i ng a vol unt e e r ’ s
s e ns e of a c hi e ve m e nt a nd m a i nt a i n c onne c t i on e ve n i f t he y m ove t o a not he r c i t y t o he l p t he m
s t a y e nt hus i a s t i c a bout w ha t t he y ha ve done . T hi s s houl d a l s o be he l pf ul i n t e r m s of m a i nt a i ni ng
t he hos pi c e vol unt e e r popul a t i on.
O n t he m a c r o l e ve l , ol de r a dul t vol unt e e r s f r om L W P A uni f or m l y a gr e e d t ha t t he A D
l e gi s l a t i on i s c ha l l e ngi ng a nd m i g ht t a ke a l ong t i m e t o a c hi e ve , but t hi s doe s not ne c e s s a r i l y
m e a n not hi ng c a n be done f r om t he i r s i de . I n s t e a d, m uc h w or k c a n be a c c om pl i s he d by hos pi c e
a nd de a t h e duc a t i on vol unt e e r s , a nd t he i r i nput s a nd e f f or t s a r e vi t a l f or t he g ove r nm e nt t o
r e a l i z e t he i m m e a s ur a bl e w or t h of E O L c a r e a nd de a t h e duc a t i on t o f i na l l y l e ga l i z e A D f or m s
a nd i nc or por a t e hos pi c e i n he a l t h a nd l ong - t e r m c a r e i ns ur a nc e s . I n one a na l y t i c a l s t udy by
33
Z ha ng e t a l . ( 2016) , m os t pa r t i c i pa nt s a gr e e d t ha t l e g i s l a t i on on t he A D w oul d i nc r e a s e t he
c ha nc e s t ha t t he i r E O L w i s he s a nd pr e f e r e nc e s w oul d be f ol l ow e d i n t he f ut ur e ( Z ha ng e t a l .
2016) . W e c a l l f or pr of e s s i ona l s a nd g e ne r a l popul a t i ons w ho a r e w i l l i ng t o c ont r i but e t o de a t h
e duc a t i on t o ke e p up w i t h t he i r g r e a t w or k w hi l e one da y w i t ne s s i ng A D f or m s be m e di c a l l y
bi ndi ng a nd l e g a l l y l e g i t i m a t e i n C hi na .
F i na l l y , i nt e r vi e w e e s pr ovi de d t hor oug h a nd t houg ht f ul f e e dba c k t o he l p us e nha nc e t he
de l i ve r y a nd c ont e nt of our de a t h e duc a t i on pr ogr a m , a nd w e m a de s om e r e vi s i ons a c c or di ng l y .
T he m os t s i g ni f i c a nt c ha nge w a s s hor t e ni ng t he t i m e of e a c h s e s s i on f r om 2 hour s t o 1- 1.5 hour s
due t o pr a c t i c a l i s s ue s r a i s e d by i nt e r vi e w e e s ( e .g., t o m a i nt a i n c onc e nt r a t i on, r e s t r oom ne e ds ) .
T he or i gi na l c a s e s c e na r i o ( a c a s e de ve l ope d by t he t e a m ) w a s r e pl a c e d w i t h t he r e a l - l i f e s t or y of
a C hi ne s e c e l e br i t y w ho e x pe r i e nc e d pa i n a nd di s c om f or t a t E O L ( S e nxi , 2019) , hopi ng t o
e nh a n c e t he pa r t i c i pa nt ’ s r e s ona nc e w i t h t he c a s e . F i na l l y , a f t e r t he G o W i s h c a r d ga m e i s pl a ye d ,
F i ve W i s he s w i l l onl y be i nt r oduc e d br i e f l y be c a us e of s i m i l a r pur pos e s a nd m uc h ove r l a ppi ng
c ont e nt of t he s e t w o t ool s . T he G o W i s h c a r d g a m e w a s r e c om m e nde d t o be ke pt be c a us e i t i s
e nt e r t a i ni ng a nd i nc r e a s e s i nt e r a c t i on, w hi l e g oi ng t hr oug h F i ve W i s he s c ont a i ns m or e l e c t ur i ng.
T he i nt e r ve nt i oni s t w i l l c ont i nue t o he l p a ny o ne w ho w oul d l i ke t o f i l l i n t he e l e c t r oni c F i ve
W i s he s onl i ne .
D ue t o f or e s e e i ng di f f i c ul t i e s i n r e c r ui t i ng pa r t i c i pa nt s , i nt e r vi e w e e s r e c om m e nde d
m ul t i pl e r e c r ui t m e nt m e t hods , s uc h a s c ol l a bor a t i ng w i t h c om m uni t y or ga ni z a t i ons , f i ndi ng
c e r t a i n ol de r a dul t s oc i a l c i r c l e s , r e c r ui t i ng pa r t i c i pa nt s t hr oug h t he s e c i r c l e s ’ s oc i a l m e di a , a nd
s now ba l l s a m pl i ng . A ddi t i ona l l y , i n t he f ut ur e , w i t h a de qua t e t i m e a nd r e s our c e s , i t i s
r e c om m e nde d t ha t de a t h e duc a t i on be i nc or por a t e d i n a s e r i e s of he a l t h l e c t ur e s f or c om m uni t y
ol de r a dul t s t o i nt e r e s t m or e pa r t i c i pa nt s a nd l e t t he m m a s t e r s y s t e m a t i c know l e dge on a gi ng a nd
34
de a t h a nd dy i ng.
C ons i s t e nt w i t h t he l i t e r a t ur e ( X u e t a l ., 2020) a nd our or i g i na l pl a n, i nt e r vi e w e e s a l s o
a gr e e d t ha t c om m uni t y de a t h e duc a t i on c oul d f i r s t be a t t e m pt e d a m ong hi g he r e duc a t i on g r oups
be c a us e t he y s houl d be m or e ope n- m i nde d a nd a c c e pt a bl e t o de a t h- r e l a t e d t opi c s . W hi l e i n t he
f ut ur e , m or e a t t e nt i on c a n be pa i d t o g r oups w i t h s pe c i a l c ondi t i ons , s uc h a s t hos e w ho l i ve a l one
or ha ve l os t t he onl y c hi l d, w ho m i g ht ne e d m or e a c c om pa ny a nd e m ot i ona l s uppor t due t o t he s e
c ondi t i ons .
O ne l i m i t a t i on of t hi s s t udy i s a s a m pl e w i t h hi g h e duc a t i on l e ve l s : O ur pa r t i c i pa nt s w e r e
r e c r ui t e d be c a us e of t he i r w or k i n de a t h a nd dy i ng a nd t hus w e r e a bi a s e d s a m pl e , a nd t he i r
be l i e f s a r e not i nt e nde d t o r e f l e c t t he g r e a t e r popul a t i on. A l s o, due t o t i m e r e s t r a i nt s of de l i ve r i ng
t he pr ogr a m a f t e r t he s e i nt e r vi e w s , onl y f our ol de r a dul t s pa r t i c i pa t e d i n t he i n- de pt h i nt e r vi e w s .
H ow e ve r , ba s e d on our f i ndi ng s , our H C P s , r e s e a r c he r s s ha r e d s i m i l a r t houg ht s w i t h ol de r a dul t
i nt e r vi e w e e s , a nd t hus w e be l i e ve s a t ur a t i on s houl d ha ve a c hi e ve d f or t hi s s t udy . A l t houg h w i t h
l i m i t a t i ons , t hi s s t udy a dds va l ua bl e i ns i g ht s t o t he l i t e r a t ur e of de a t h e duc a t i on f or C hi ne s e
popul a t i ons . W e r e c om m e nd t ha t f ut ur e r e s e a r c he r s a nd pr a c t i t i one r s c ons i de r our i nt e r vi e w e e s ’
s ug ge s t i ons i n bot h c ont e nt a nd de l i ve r y w he n de ve l opi ng a nd de l i ve r i ng de a t h e duc a t i on t o
C hi ne s e , c ons i de r i ng m ul t i - l e ve l c ha l l e nge s but s t a y i ng pos i t i ve i n a dva nc i ng t he publ i c de a t h
e duc a t i on c a m pa i gn.
35
C h ap t e r 3: D e l i ve r i n g a D e at h E d u c at i on P r ogr am am on g C om m u n i t y- D w e l l i n g C h i n e s e
O l d e r A d u l t s : A P i l ot Q u as i - E xp e r i m e n t al S t u d y
I n t r od u c t i on
D e a t h i s t he l a s t s t e p i n a hum a n be i ng ’ s g r ow t h a nd de ve l opm e nt , a nd e ve nt ua l l y
ha ppe ns t o e ve r y i ndi vi dua l . L i vi ng i n a de a t h- a voi di ng s oc i e t y , f a c i ng de a t h c a n be
a c c om p a ni e d by m uc h f e a r a nd s uf f e r i ng, bot h phy s i c a l l y a nd ps y c h ol ogi c a l l y ( Z ha o e t a l ., 2018) .
B e c a us e of t he de a t h de ni a l c ul t ur e , m a ny pe opl e do not c ons i de r E O L w i s he s a nd c a r e
pr e f e r e nc e s unt i l l a t e r on, e ve n w he n i t i s t oo l a t e t o m a ke w e l l - i nf or m e d de c i s i ons due t o t he
de t e r i or a t i ng c ondi t i ons . T hi s c a n c a us e ne ga t i ve c ons e que nc e s , i nc l udi ng f a m i l y a nd ot he r l ove d
one s not know i ng how t o be s t c a r e f or a nd s uppor t t he dy i ng pe opl e , dy i ng pe opl e f e e l i ng
di s t r e s s e d a nd s t r ug gl i ng t o a c hi e ve a g ood de a t h ( P e nf ol d- M ounc e , 2018) .
O ne s ol ut i on t o a ddr e s s i ng de a t h de ni a l i s de a t h e duc a t i on t o e na bl e pe opl e a nd f a m i l i e s
t o m a ke w e l l - i nf or m e d de c i s i ons ba s e d on know l e dge , not f e a r . I t i s i nt ui t i ve t o de l i ve r de a t h
e duc a t i on t o pe opl e w i t h c e r t a i n l i f e - t hr e a t e ni ng i l l ne s s e s be c a us e de a t h f or t he m i s m or e
pr e di c t a bl e a nd i m pe ndi ng . H ow e ve r , de a t h e duc a t i on i s ne e de d not onl y i n he a l t h c a r e
i ns t i t ut i ons but a l s o i n t he c om m uni t y . O n t he i ndi vi dua l l e ve l , w e ne ve r know w ha t t om or r ow
w i l l br i ng. T hi nki ng a bout E O L c a r e i n a dva nc e a nd di s c us s i ng i t w i t h l ove d one s a nd H C P s c a n
i nc r e a s e t he oppor t uni t y t ha t one ’ s E O L w i s he s a r e r e s pe c t e d a nd f ol l ow e d ( B r i nkm a n-
S t oppe l e nbur g e t a l ., 2014) . O n t he s oc i e t a l l e ve l , de a t h e duc a t i on ha s i ne s t i m a bl e w or t h be c a us e
i t i s not onl y m e di c a l but a l s o ps y c h ol ogi c a l a nd s pi r i t ua l . O l de r a dul t s c ont i nuous l y s e e k
m e a ni ngs i n l i f e a t a n a dva nc e d a ge by c r e a t i ng a nd di s c ove r i ng ( H upke ns e t a l ., 2016) .
E x pl or i ng one ’ s va l ue s a nd be l i e f s i s a vi t a l pa r t of de a t h e duc a t i on; i t of f e r s ol de r a dul t s a n
oppor t uni t y t o r e t hi nk l i f e a nd t he r e l a t i ons hi p be t w e e n l i f e a nd de a t h, pl a n f or l a t e r l i f e t o be
36
m or e f ul f i l l i ng a nd t he ul t i m a t e e nd m or e s a t i s f y i ng. T hi s c a n he l p s oc i e t y br e a k t he de a t h t a boo
a nd c r e a t e a n e nvi r onm e nt w he r e di s c us s i ons a bout de a t h a r e be c om i ng m or e ope n, m or e r a t i ona l ,
a nd l e s s da unt i ng .
I n C hi na , a dvoc a t i ng f or de a t h e duc a t i on f or g e ne r a l popul a t i ons ha s e ve n m or e va l ue .
C hi na be ga n t he one - c hi l d pol i c y i n t he 1980s . A l t houg h i t w a s c ha nge d t o t w o- c hi l d i n 2015, t he
pol i c y ha s s i g ni f i c a nt l y de c r e a s e d t he num be r of t he w or ki ng- a ge popul a t i on a nd i nc r e a s e d
pr e s s ur e f or t he g ove r nm e nt a nd i ndi vi dua l s t o c a r e f or ol de r g e ne r a t i ons ( Z ha ng & Y u, 2017) .
A s a r e s ul t , a l t houg h C hi ne s e ol de r a dul t s s t i l l pr e f e r t o l i ve w i t h t he i r c hi l dr e n, t he y do not
e x pe c t t hi s t o ha ppe n a nd w oul d r a t he r l i ve i n e l de r c a r e i ns t i t ut i ons t o de c r e a s e c hi l dr e n ’ s
bur de n ( G us t a f s on & H ua ng, 2014) . P r ovi di ng de a t h e duc a t i on a nd ha vi ng de a t h- r e l a t e d
di s c us s i ons w i t h c om m uni t y r e s i de nt s a r e bot h va l ua bl e a nd ur ge nt , t o l e t t he i r voi c e s be he a r d,
i nc r e a s e c om m uni c a t i on a nd m ut ua l unde r s t a ndi ng w i t hi n t he f a m i l y r e ga r di ng c a r e gi vi ng a nd
E O L c a r e i s s ue s , m a ki ng pl a ns i n a dva nc e , a nd e nha nc e ol de r a dul t s ’ ove r a l l w e l l - be i ng a t a l a t e r
s t a ge of l i f e .
S o f a r , onl y a s m a l l num be r of de a t h e duc a t i on pr ogr a m s ha ve be e n doc um e nt e d t o be
de l i ve r e d t o g e ne r a l C hi ne s e popul a t i ons w or l dw i de . A m ong t he f e w , W a ng e t a l . ( 2021)
pr ovi de d a de a t h e duc a t i on pr ogr a m ba s e d on t he K A B m ode l t o 30 nur s i ng hom e a nd 30
c om m uni t y - dw e l l i ng ol de r a dul t s i n B e i j i ng, w i t h qua l i t a t i ve f i ndi ng s t ha t pa r t i c i pa nt s be c a m e
m or e know l e dge a bl e a bout de a t h a nd dy i ng, ha d l ow e r de a t h a nx i e t y a f t e r t he pr og r a m , be ga n t o
t hi nk a bout or e ve n pr e pa r e f or de a t h a nd dy i ng, be c a m e m or e pr e pa r e d f or a c c i de nt a l e ve nt s ,
a nd c he r i s he d t he r e m a i ni ng t i m e . H s i e h e t a l . ( 2013) pr om ot e d A C P i n T a i w a n us i ng
a ppr opr i a t e c ul t ur a l c onc e pt s , s uc h a s l i f e a s f our s e a s ons . A f t e r t he pr ogr a m , 32% of pa r t i c i pa nt s
w e r e w i l l i ng t o s i g n A D f or m s . L e e e t a l . ( 2015) e x a m i ne d t he e f f e c t i ve ne s s of a nur s e - l e d,
37
c ul t ur a l l y s e ns i t i ve A C P s e m i na r f or C hi ne s e A m e r i c a n a dul t s ; a f t e r t he pr ogr a m , 20%
c om pl e t e d a n A D , a nd 35.6% ha d a n A C P di s c us s i on one m ont h l a t e r . S un e t a l . ( 2017) t e s t e d
t he e f f i c a c y of a c hur c h- ba s e d i nt e r ve nt i on t o i nc r e a s e A D know l e dge a nd be ha vi or c ha nge
a m ong C hi ne s e a nd V i e t na m e s e A m e r i c a ns ; t he y r e por t e d s i g ni f i c a nt i nc r e a s e s i n pa r t i c i pa nt s ’
A D - r e l a t e d know l e dg e a nd i nt e nt i on, r e s ul t i ng i n 71.8% A D c om pl e t i on a nd 25.0% ha vi ng ha d a
pr ox y c onve r s a t i on. B e s i de s t he e x t r e m e l y s m a l l num be r of s t udi e s t ha t w e r e c onduc t e d, one
i s s ue w i t h pr e vi ous s t udi e s i s t ha t A D c om pl e t i on i s t he pr i m a r y out c om e . T hi s doe s not a ppl y
w e l l t o C hi na , w he r e A D f or m s a r e not l e ga l l y bi ndi ng . T hus , i t i s m or e va l ua bl e t o he l p ol de r
a dul t s t hi nk a bout t he i r l i f e a nd de a t h, e x pl or e t he i r va l ue s , i ni t i a t e a dva nc e pl a nni ng di s c us s i ons ,
a nd e nc our a ge t hi s t y p e of c om m uni c a t i on w i t h f a m i l i e s a nd H C P s .
T o a dd t o t he body of de a t h e duc a t i on l i t e r a t ur e f or C hi ne s e popul a t i ons , m y t e a m
de ve l ope d a de a t h e duc a t i on pr ogr a m a nd r e f i ne d i t t hr ough e x pe r t c ons ul t a t i ons w i t h C hi ne s e
H C P s , r e s e a r c he r s , a nd ol de r hos pi c e vol unt e e r s . E xpe r t s s t a t e d t he r e a r e di f f i c ul t i e s on t he
i ndi vi dua l , or ga ni z a t i ona l , a nd l e g a l l e ve l s i n de l i ve r i ng de a t h e duc a t i on t o C hi ne s e ol de r a dul t s ,
but a l s o e x pr e s s e d t he de a t h e duc a t i on ’ s ne c e s s i t y a nd t he i r c onf i de nc e i n e x pa ndi ng t he e f f or t s
i n C hi na i n t he ne a r f ut ur e . T he t e a m a l s o r e vi s e d t he pr ogr a m ba s e d on t he i r s ug ge s t i ons , s uc h
a s s hor t e ni ng t he s e s s i on l e ngt h a nd us i ng r e a l - l i f e s t or i e s f a m i l i a r t o C hi ne s e pe opl e . W e f ur t he r
c onduc t e d pi l ot t e s t i ng w i t h a g r oup of c om m uni t y - dw e l l i ng C hi ne s e ol de r a dul t s , us i ng a qua s i -
e x pe r i m e nt a l s t udy de s i gn. T he a i m of t hi s s t udy w a s t o e x a m i ne t he pr ogr a m ’ s i m pa c t on ol de r
C hi ne s e c om m uni t y r e s i de nt s ’ de a t h- r e l a t e d know l e dge , a t t i t ude s , a nd a dva nc e pl a nni ng
be ha vi or . W e hy p ot he s i z e d t ha t t he i nt e r ve nt i on w oul d r e s ul t i n i nc r e a s e d de a t h- r e l a t e d
know l e dge , m or e pos i t i ve a t t i t ude s t ow a r d a dva nc e pl a nni ng , a nd m or e a dva nc e pl a nni ng
be ha vi or a m ong t he i nt e r ve nt i on g r oup, c om pa r e d t o t he c om pa r i s on g r oup.
38
M e t h od s
S t u d y D e s i gn
T hi s s t udy us e d a qua s i - e x pe r i m e nt a l c om pa r i s on g r oup s t udy de s i gn, c onduc t e d f r om
O c t obe r 2020 t o J a nua r y 2021. I n t e r ve nt i on g r oup ( I G ) a nd c om pa r i s on g r oup ( C G ) pa r t i c i pa nt s
w e r e r e c r ui t e d f r om t w o c om m uni t i e s i n L a nz hou, a pr ovi nc i a l c a pi t a l c i t y i n nor t hw e s t C hi na ,
w i t h a s i m i l a r ba c kgr ound. I G pa r t i c i pa t e d i n our t w o- da y de a t h e duc a t i on pr ogr a m , w hi l e C G
r e c e i ve d no i nt e r ve nt i on. F or t he I G , a dva nc e pl a nni ng - r e l a t e d know l e dge , a t t i t ude , a nd be ha vi or
w e r e a s s e s s e d a t ba s e l i ne ( T 0 , i m m e di a t e l y a f t e r t he e nr ol l m e nt ) a nd i m m e di a t e l y a f t e r t he
i nt e r ve nt i on ( T 1 , a ppr ox i m a t e l y t w o m ont hs a f t e r T 0 ) ; t he C G w e r e a s s e s s e d a t a s i m i l a r t i m e .
E a c h pa r t i c i pa nt r e c e i ve d t w o s m a l l g i f t s , e a c h w or t h¥20 C hi ne s e m one y ( a ppr ox i m a t e l y $3
dol l a r s ) , one a t T 0 a nd one a t T 1 , a f t e r t he pa r t i c i pa nt c om pl e t e d t he a s s e s s m e nt . T hi s s t udy w a s
a ppr ove d by t he U ni ve r s i t y of S out he r n C a l i f or ni a I n s t i t ut e R e vi e w B oa r d ( I R B ) . L a nz hou
U ni ve r s i t y doe s not ha ve a n I R B , but t he P I di s c us s e d t he pr ogr a m w i t h t he de a n a nd pr of e s s or s
w ho a ppr ove d t he pr opos e d s t udy pr ot oc ol a nd c onne c t e d r e s e a r c he r s t o t he r e t i r e d s t a f f
a s s oc i a t i ons i n L a nz hou hi g he r e duc a t i on di s t r i c t s .
P ar t n e r A ge n c y
T he P I c ol l a bor a t e d w i t h a f a c ul t y m e m be r f r om t he D e pa r t m e nt of S oc i a l W or k a t
L a nz hou U ni ve r s i t y S c hool of P hi l os ophy a nd S oc i ol og y , C hi na . A l l r e s e a r c h a s s i s t a nt s ,
i nc l udi ng a pr ogr a m c oor di na t or a nd 10 da t a c ol l e c t or s , w e r e he r M a s t e r of S oc i a l W or k ( M S W )
s t ude nt s . O ne of he r M S W s t ude nt s w a s c hos e n a s t he c oor di na t or be c a us e of hi s e x t e ns i ve
e x pe r i e nc e a s c o- i nve s t i ga t or or a s s i s t a nt on r e s e a r c h pr ogr a m s . H i s dut i e s i nc l ude d s c r e e ni ng
pot e nt i a l pa r t i c i pa nt s a nd c oor di na t i ng t he i nt e r ve nt i on t i m e . N a t ur a l l y , he w a s not bl i nde d t o
s t udy g r oup a s s i g nm e nt .
39
P ar t i c i p an t R e c r u i t m e n t an d S c r e e n i n g
I G pa r t i c i pa nt s w e r e r e c r ui t e d w i t h t he r e t i r e d s t a f f a s s oc i a t i on ’ s a s s i s t a nc e , a n
a s s oc i a t i on t ha t e x i s t s i n a l l uni ve r s i t i e s i n C hi na . T he t e a m f i r s t pr e pa r e d a br i e f i nf or m a t i on
s he e t i n C hi ne s e c ont a i ni ng t he s t udy ’ s a i m , a c t i vi t i e s , a nd e l i g i bi l i t y c r i t e r i a . T he a s s oc i a t i on
pos t e d t he i nf or m a t i on s he e t i n i t s W e C ha t g r oup a nd i nvi t e d i t s m e m be r s t o a n i nf or m a t i on
s e s s i on he l d i n a n a c t i vi t y r oom . I n t hi s s e s s i on, t he P I or t he c oor di na t or s c r e e ne d t he ol de r a dul t
f or s t udy e l i g i bi l i t y us i ng a s c r e e ni ng f or m ( A ppe ndi x I I I ) . I nc l us i on c r i t e r i a i nc l ude d: 1) A ge 60
a nd a bove , 2) a bl e t o r e a d a nd s pe a k M a nda r i n C hi ne s e , 3) H a s s om e one w i t h w hom t he y c a n
di s c us s pr i va t e i s s ue s ( e .g., f i na nc e , i l l ne s s ) , a nd 4) H a s t r a ns por t a t i on t o c om e t o t he r e s e a r c h
s i t e . E xc l us i on c r i t e r i a i nc l ude d: 1) c ogni t i ve i m pa i r m e nt a s m e a s ur e d by a s c or e of f our or
a bove on t he S hor t P or t a bl e M e nt a l S t a t us Q ue s t i onna i r e , a nd 2) m ode r a t e t o m a j or de pr e s s i on
m e a s ur e d by a s c or e of t e n or a bove on t he P a t i e nt H e a l t h Q ue s t i onna i r e - 8 I t e m s . I f a n ol de r
a dul t m e t t he e l i g i bi l i t y , t he P I / c oor di na t or i nt r oduc e d t he pr ogr a m i n de t a i l a nd a s ke d i f t he y
w e r e i nt e r e s t e d i n pa r t i c i pa t i ng. A n ol de r a dul t i nt e r e s t e d i n pa r t i c i pa t i ng s i g ne d t he i nf or m e d
c ons e nt a nd c om pl e t e d t he de m ogr a phi c da t a s he e t . T he n, t he y w e r e a s s i g ne d t o a da t a c ol l e c t or
f or t he ba s e l i ne ( T 0 ) a s s e s s m e nt a nd w e r e g i ve n a s m a l l g i f t a f t e r c om pl e t i ng i t . I G ’ s i nf or m a t i on
on a ge , g e nde r , a nd e duc a t i on l e ve l w e r e c ol l e c t e d t o e ns ur e C G pa r t i c i pa nt s , w he n r e c r ui t e d
l a t e r , w oul d ha ve a s i m i l a r ba c kgr ound.
C G pa r t i c i pa nt s w e r e r e c r ui t e d us i ng a pur pos i ve s a m pl i ng m e t hod f r om t hr e e
uni ve r s i t i e s c l os e t o e a c h ot he r i n a not he r c om m uni t y i n L a nz hou. W e c hos e t hi s c om m uni t y
be c a us e i t i s f a r f r om t he I G ’ s c om m uni t y t o de c r e a s e t he pos s i bi l i t y of c ont a m i na t i on. T he P I
a nd t he c oor di na t or f i r s t l e d a t e a m of da t a c ol l e c t or s a nd w e nt t o t he bui l di ng of t he r e t i r e d s t a f f
a s s oc i a t i on of one uni ve r s i t y . A f t e r t a l ki ng w i t h t he a s s oc i a t i on ’ s m a na ge m e nt a nd obt a i ni ng
40
pe r m i s s i on, t he P I a nd t he c oor di na t or a ppr oa c he d ol de r a dul t s i n t he bui l di ng one a f t e r a not he r
t o i nt r oduc e t he s t udy a c t i vi t i e s ( i .e ., t hr e e s ur ve y i nt e r vi e w s ) , s c r e e n f or e l i g i bi l i t y , a nd a s k
t hos e e l i g i bl e f or c ons e nt t o pa r t i c i pa t e . A s m a l l g i f t w a s g i ve n t o t he ol de r a dul t a f t e r
c om pl e t i on of t he T 0 a s s e s s m e nt .
A f t e r r e c r ui t i ng 14 C G pa r t i c i pa nt s f r om t he f i r s t uni ve r s i t y , t he P I c om pa r e d t he
ba c kgr ound i nf or m a t i on of t w o g r oups a nd f ound t ha t t he C G ’ s a ve r a ge e duc a t i on l e ve l w a s
l ow e r t ha n t ha t of t he I G . A ge a nd g e nde r di s t r i but i ons w e r e s i m i l a r . T hus , w he n r e c r ui t i ng m or e
pa r t i c i pa nt s f r om t he ot he r t w o uni ve r s i t i e s , t he P I a nd t he c oor di na t or pur pos e f ul l y r e c r ui t e d
ol de r a dul t s w i t h a hi g he r e duc a t i on l e ve l ( i .e ., a s s oc i a t e ’ s de gr e e a nd a bove ) . T he r e c r ui t m e nt
pr oc e dur e w a s t he s a m e i n t hos e t w o uni ve r s i t i e s .
I n t e r ve n t i on P r oc e s s
O ur de a t h e duc a t i on pr ogr a m , t i t l e d “ M y L i f e , M y W i s he s ” w a s de ve l ope d t o he l p
c om m uni t y - dw e l l i ng C hi ne s e ol de r a dul t s br e a k t he t a boo s ur r oundi ng de a t h a nd l e a r n a bout
a dva nc e pl a nni ng i n phy s i c a l , ps y c h ol ogi c a l / s pi r i t ua l , f i na nc i a l , a nd s oc i a l a s pe c t s . B a s e d on
S t a g e I A e x pe r t s ’ s ug ge s t i ons f or r e vi s i on a nd i m pr ove m e nt , t he f i na l out l i ne i s s how n i n T a bl e 4.
T a b l e 4
“ M y L i f e , M y W i s h e s ” P r o g r a m O u t l i n e ( r e v i s e d )
C o n t e n t
D a y 1 ( 1 t o
1 . 5 h o u r s )
“ T h e T r a i n o f L i f e ” ( v i d e o , d i s c u s s i o n )
L i f e r e v i e w , f o c u s i n g o n i l l n e s s o r d e a t h e x p e r i e n c e s o f p a r t i c i p a n t s o r
t h e i r l o v e d o n e s ( r e v i e w , d i s c u s s i o n )
B a J i n ’ s s t o r y a n d i n t r o d u c t i o n o f d i f f e r e n t E O L c a r e o p t i o n s ( c a s e
s c e n a r i o , d i s c u s s i o n )
Q & A
D a y 2 ( 1 t o
1 . 5 h o u r s )
G o W i s h c a r d g a m e f o r e x p r e s s i n g o n e ’ s E O L p r e f e r e n c e s ( g a m e ,
d i s c u s s i o n )
H o w t o i n i t i a t e a n d h a v e d e a t h - r e l a t e d d i s c u s s i o n s w i t h f a m i l y
m e m b e r s ( v i d e o , d i s c u s s i o n )
P r o v i d e F i v e W i s h e s f o r m t o t h e p a r t i c i p a n t f o r r e f e r e n c e
Q & A
41
T he pr ogr a m ha d t w o s e s s i ons s pr e a d ove r t w o da y s , w i t h e a c h s e s s i on l a s t i ng 1 t o 1.5
hour s . T he r e w a s a br e a k w i t hi n e a c h s e s s i on i f a n ol de r a dul t pa r t i c i pa nt pr e f e r r e d t o us e i t . B ot h
s e s s i ons w e r e c onduc t e d i ndi vi dua l l y be t w e e n t he i nt e r ve nt i oni s t a nd one pa r t i c i pa nt . A na r r a t i ve
w a s de ve l ope d by t he P I a nd r e vi e w e d by t he s e ni or r e s e a r c he r on t he t e a m t o g ui de t he t w o
s e s s i ons . T he P I s t r i c t l y f ol l ow e d t he na r r a t i ve dur i ng t he t r a i ni ng . I n t he f i r s t s e s s i on, t he
pr ogr a m s t a r t e d w i t h s e r vi ng t he pa r t i c i pa nt a c up of t e a a nd a s ki ng f or pe r m i s s i on t o voi c e
r e c or d t w o s e s s i ons . T he i nt e r ve nt i oni s t a nd t he pa r t i c i pa nt t he n w a t c he d a Y ouT ube vi de o t i t l e d
T he T r a i n of L i f e , de pi c t i ng one ’ s l i f e a s a t r a i n j our ne y f ul l of a c hi e ve m e nt s a nd di f f i c ul t i e s , j oy
a nd s or r ow . T he vi de o ha s t r a ns c r i pt s i n t r a di t i ona l C hi ne s e a nd w a s dow nl oa de d f or us e . T he
i nt e r ve nt i oni s t a s ke d t he pa r t i c i pa nt i f t he y unde r s t ood t he m e a ni ng of t hi s vi de o. I f no, t he
i nt e r ve nt i oni s t e x pl a i ne d t he m e a ni ng. O nc e t he pa r t i c i pa nt unde r s t ood t he vi de o, a l i f e r e vi e w
w a s c onduc t e d w i t h que s t i ons a s ki ng a bout t he i r ha ppy m om e nt s a f t e r r e t i r e m e nt , r e c e nt
e x pe r i e nc e s of i l l ne s s or de a t h e x pe r i e nc e s of t he pa r t i c i pa nt or l ove d one s , a nd how t he y w a nt e d
t o be t a ke n c a r e of w he n ha vi ng phy s i c a l or c ogni t i ve i m pa i r m e nt s . A f t e r t ha t , t he E O L s t or y of
B a J i n ( S e nxi , 2019) , a w e l l - know n w r i t e r i n C hi na , w a s us e d t o i nt r oduc e di f f e r e nt c a r e c hoi c e s
a t E O L i n C hi na a nd a ddr e s s t he i m por t a nc e of m a ki ng pl a ns a nd ha vi ng de a t h- r e l a t e d
c onve r s a t i ons w i t h t he l ove d one s i n a dva nc e . T he i nt e r ve nt i oni s t a l s o a s ke d t he pa r t i c i pa nt ’ s
t houg ht s on E O L c a r e . A t t he e nd of t he f i r s t s e s s i on, t he i nt e r ve nt i oni s t a ns w e r e d a ny of t he
pa r t i c i pa nt ’ s que s t i ons a nd r e m i nde d t he m of t he da t e a nd t i m e f or t he s e c ond s e s s i on.
I n t he s e c ond s e s s i on, t he pa r t i c i pa nt w a s w e l c om e d w i t h a c up of t e a . T he n, t he G o W i s h
c a r ds g a m e w a s pl a y e d. F i r s t , a pa r t i c i pa nt w a s a s ke d t o pi c k t he t hr e e m os t i m por t a nt w i s he s i n
e a c h t y p e a nd e xpl a i n t he r e a s ons f or c hoos i ng t he s e c a r ds a nd w ha t c oul d be w or ke d on s t a r t i ng
f r om t hi s m om e nt t o he l p a c hi e ve t he s e w i s he s . T he n, t he pa r t i c i pa nt w a s a s ke d t o pi c k t he m os t
42
i m por t a nt c a r d i n e a c h of t he f our t y p e s . A f t e r t ha t , t he pa r t i c i pa nt w a t c he d a s hor t vi de o i n
C hi ne s e a bout how t o i ni t i a t e a nd ha ve de a t h- r e l a t e d di s c us s i ons w i t h t he f a m i l y a nd H C P s .
F i na l l y , t he i nt e r ve nt i oni s t br i e f l y i nt r oduc e d t he C hi ne s e ve r s i on of F i ve W i s he s . T he
i nt e r ve nt i oni s t i nf or m e d t he pa r t i c i pa nt t ha t , i f t he y pr e f e r , t he y c oul d g o t o t he L W P A ’ s w e bs i t e
t o f i l l i n a n e l e c t r oni c ve r s i on of t he F i ve W i s he s . T he i nt e r ve nt i oni s t c oul d pr ovi de he l p dur i ng
t hi s pr oc e s s . T he i nt e r ve nt i oni s t a l s o i nt r oduc e d t he C hi na W i l l R e gi s t r a t i on C e nt e r , a not he r not -
f or - pr of i t or g a ni z a t i on i n C hi na t ha t he l ps ol de r a dul t s w ho m e e t s om e s pe c i f i c c r i t e r i a ( e .g.,
a nnua l i nc om e ) t o m a ke a w i l l f or f r e e . A t t he e nd of t he pr ogr a m , t he i nt e r ve nt i oni s t t ha nke d t he
pa r t i c i pa nt , a ns w e r e d a ny que s t i ons , a nd e nc our a ge d t he m t o s ha r e g a i ns a nd t houg ht s f r om
a t t e ndi ng t hi s pr ogr a m w i t h t he i r l ove d one s .
T he i nt e r ve nt i on w a s c onduc t e d i n t w o l oc a t i ons . O ne w a s a n a c t i vi t y r oom of t he r e t i r e d
s t a f f a s s oc i a t i on of L a nz hou U ni ve r s i t y ; t he ot he r w a s a n of f i c e r oom of t he S oc i a l S e r vi c e
C e nt e r e s t a bl i s he d by t he L a nz hou U ni ve r s i t y S c hool of P hi l os ophy a nd S oc i ol og y . T he m a i n
l oc a t i on w a s t he a s s oc i a t i on ’ s a c t i vi t y r oom ; w he ne ve r i t w a s not a va i l a bl e due t o c e r t a i n
a c t i vi t i e s , t he s e c ond l oc a t i on w oul d be us e d. T w o l oc a t i ons w e r e a ppr ox i m a t e l y 100 m e t e r s
a pa r t . T he i nt e r ve nt i oni s t w a s t he P I , a f or m e r s oc i a l w or ke r w or ki ng w i t h nur s i ng hom e
r e s i de nt s a nd c ur r e nt s oc i a l g e r ont ol ogy r e s e a r c he r i n t he E O L f i e l d. T he pr ogr a m c oor di na t or
a r r a nge d t he i nt e r ve nt i on da t e a nd t i m e w i t h pa r t i c i pa nt s ove r t he phone .
D at a C ol l e c t i on
D e a t h- r e l a t e d know l e dge , a t t i t ude , a nd be ha vi or w e r e a s s e s s e d a t ba s e l i ne ( T 0 ) a nd
i m m e di a t e l y a f t e r t he i nt e r ve nt i on e nds ( T 1 ) ( s e e A ppe ndi x I V a nd V f or s ur ve y que s t i ons ) . F or
T 0 a s s e s s m e nt , t r a i ne d da t a c ol l e c t or s g a t he r e d da t a w i t h a f a c e - t o- f a c e s ur ve y i nt e r vi e w w i t h t he
pa r t i c i pa nt . T 1 a s s e s s m e nt s w e r e c om pl e t e d ove r t he phone , w i t h one ol de r a dul t ’ s a s s e s s m e nt s
43
c onduc t e d by one s a m e da t a c ol l e c t or .
A l l 10 da t a c ol l e c t or s w e r e t r a i ne d by t he P I w i t h a t w o- s e s s i on w or ks hop be f or e t he
s t udy s t a r t e d, w i t h e a c h s e s s i on l a s t i ng t w o hour s . T he t r a i ni ng f oc us e d on how t o bui l d a
r e l a t i ons hi p a nd c onduc t s ur ve y i nt e r vi e w s w i t h ol de r a dul t s . T he P I a s ke d t he m t o f ol l ow t he
s ur ve y i nt e r vi e w g ui de s t r i c t l y a nd not a s k que s t i ons be y o nd t he g ui de w he n c onduc t i ng t he
a s s e s s m e nt . M oc k s ur ve y i nt e r vi e w s w e r e he l d dur i ng e a c h t r a i ni ng s e s s i on. Q & A s e s s i ons w e r e
he l d a t t he e nd of t he s e s s i ons t o e ns ur e a l l s t ude nt s w e l l unde r s t a nd t he pr oc e dur e . T he y w e r e
not i nf or m e d of t he pr og r a m i nf or m a t i on or t he g r oup a s s i g nm e nt .
S am p l e S i z e
B a s e d on r e c om m e nda t i ons f r om m ul t i pl e r e s e a r c he r s ( e .g., H oope r , 2019; S e ka r a n &
B ougi e , 2016) , 30 pa r t i c i pa nt s w e r e ne e de d f or e a c h g r oup f or a pi l ot s t udy . C ons i de r i ng a
dr opout r a t e of 20% , 37 pa r t i c i pa nt s w e r e ne e de d f or e a c h g r oup. U nf or t una t e l y , w e onl y
r e c r ui t e d 29 I G a nd 34 C G pa r t i c i pa nt s due t o s e ve r a l c ha l l e nge s . T he s e w e r e de s c r i be d a t t he
be gi nni ng of t he R e s ul t s s e c t i on.
M e as u r e m e n t s
D e at h - R e l at e d K n ow l e dge
A t a l l a s s e s s m e nt s , a pa r t i c i pa nt w a s a s ke d t o a s s e s s t he i r know l e dge on a dva nc e c a r e
pl a nni ng , l i f e - s us t a i ni ng t r e a t m e nt , a nd hos pi c e us i ng t hr e e que s t i ons . F or e x a m pl e , f or t he
a dva nc e c a r e pl a nni ng , t he s e l f - de ve l ope d que s t i on w a s : “ F r om 1 t o 5, how m uc h do y o u
unde r s t a nd t he t e r m adv anc e c ar e pl anni ng ? ” w i t h 1 r e pr e s e nt i ng “ doe s not unde r s t a nd a t a l l ”
a nd 5 r e pr e s e nt i ng “ unde r s t a nd a l ot ” . I f one a ns w e r e d 1 t o 3, t he da t a c ol l e c t or br i e f l y
i nt r oduc e d t he c onc e pt us i ng t he pr e - de ve l ope d na r r a t i ve . I f one a ns w e r e d 4 a nd 5, t he
pa r t i c i pa nt w a s a s ke d t o e x pl a i n i t . B a s e d on t he e x pl a na t i on, t he da t a c ol l e c t or t he n m a de t he
44
j udg m e nt t o c hoos e t he num be r t ha t w oul d be s t de s c r i be t he pa r t i c i pa nt ’ s r e a l unde r s t a ndi ng of
t he c onc e pt .
D e at h - R e l at e d A t t i t u de s
D e a t h- r e l a t e d a t t i t ude que s t i ons w e r e a l s o de ve l ope d by t he t e a m . A t a l l a s s e s s m e nt s , a
pa r t i c i pa nt w a s a s ke d, f r om 1 t o 5, how m uc h t he y a gr e e d w i t h t he s t a t e m e nt s t ha t a n ol de r a dul t
s houl d c ons i de r , w r i t e dow n, a nd di s c us s E O L w i s he s w i t h l ove d one s i n a dva nc e ( t he s e a r e
t hr e e s e pa r a t e que s t i ons ) , w i t h 1 r e pr e s e nt i ng “ s t r ong l y di s a gr e e ” a nd 5 r e pr e s e nt i ng “ s t r ong l y
a gr e e ” . I f one a ns w e r e d 1 “ s t r ong l y di s a gr e e ” or 2 “ di s a g r e e ” f or t he “ t hi nki ng a bout ” que s t i on,
t he y w oul d s ki p t he ot he r t w o que s t i ons .
A ddi t i ona l l y , one ’ s de a t h a nx i e t y w a s a s s e s s e d us i ng a 14- i t e m s c a l e ba s e d on t he D e a t h
A nx i e t y Q ue s t i onna i r e ( D A Q ) ( C ont e e t a l ., 1982) a nd w a s t r a ns l a t e d f or us e i n t he t e a m ’ s
pr e vi ous l ong i t udi na l s t udi e s i n C hi na . E x a m pl e que s t i ons i nc l ude : “ D o y o u w or r y a bout dy i ng? ”
“ D o y o u w or r y t ha t y o u w i l l be ve r y i l l f or a l ong t i m e be f or e y o u di e ? ” E a c h que s t i on w a s r a t e d
on a 3- poi nt s c a l e w i t h 1 r e pr e s e nt i ng “ not a t a l l ” , 2 “ s om e w ha t ” , a nd 3 “ ve r y m uc h ” .
R e s ponde nt s c oul d a l s o a ns w e r “ do not know ” , “ r e f us e t o a ns w e r ” , or “ not a ppl i c a bl e ” , w hi c h
w e r e a l l t r e a t e d a s m i s s i ng . I f a pa r t i c i pa nt a ns w e r e d f e w e r t ha n 4/ 3 of a l l i t e m s ( i .e ., 10 i t e m s ) ,
t he i r t ot a l s c or e w oul d not be c a l c ul a t e d. O t he r w i s e , m i s s i ng i t e m s w oul d be r e pl a c e d w i t h t he
a ve r a ge s c or e of ot he r i t e m s a ns w e r e d by t he pa r t i c i pa nt . I t e m s c or e s w e r e s um m e d up t o obt a i n
t he ove r a l l de a t h a nx i e t y s c or e , w i t h a hi g he r s c or e i ndi c a t i ng hi g he r de a t h a nx i e t y .
A dv an c e P l an n i n g B e h av i or
A t T 1 a s s e s s m e nt , a pa r t i c i pa nt w a s a s ke d i f , i n t he pa s t w e e k, t he y di s c us s e d w i t h a ny
l ove d one s a bout t he i r E O L w i s he s , a ns w e r i ng “ y e s ” or “ no” .
S oc i o- de m ogr aph i c I n f or m at i on
45
A t ba s e l i ne , a n ol de r a dul t ’ s f ol l ow i ng i nf or m a t i on w a s c ol l e c t e d: a g e , g e nde r ( m a l e ,
f e m a l e ) , e duc a t i on l e ve l ( hi gh s c hool a nd be l ow , a s s oc i a t e ’ s de gr e e , ba c he l or ’ s de gr e e , m a s t e r ’ s
de gr e e a nd a bove ) , m a r i t a l s t a t us ( s i ng l e , m a r r i e d, di vor c e d, w i dow e d) , r e l i g i on ( none , I s l a m ,
B uddhi s m , C hr i s t i a ni t y , ot he r ) , f i na nc i a l s i t ua t i on ( ve r y di f f i c ul t , di f f i c ul t , s o s o, c om f or t a bl e ,
ve r y c om f or t a bl e ) , l i vi ng a r r a nge m e nt ( l i vi ng a l one , l i vi ng w i t h ot he r s ) , a nd pe r c e i ve d g e ne r a l
he a l t h c ondi t i on ( poor , f a i r , g ood, e x c e l l e nt ) .
D at a A n al ys i s
F i r s t , i nt e nt i on- t o- t r e a t a na l y s i s w a s a ppl i e d. A f t e r da t a c l e a ni ng t o c onf i r m da t a e nt r y
a c c ur a c y , t he e x t e nt of m i s s i ng da t a w a s f i r s t e va l ua t e d. D e s c r i pt i ve s t a t i s t i c s w e r e pe r f or m e d
w i t h m e a ns a n d s t a nd a r d de vi a t i o ns f or c o nt i n uo us va r i a b l e s a n d f r e que n c y f or di s c r e t e va r i a b l e s .
I G a nd C G ’ s s oc i o- de m ogr a phi c s w e r e c om pa r e d us i ng a t - t e s t or c hi - s qua r e t e s t . F or c ont i nuous
out c om e va r i a bl e s , e x c e pt f or s y s t e m a t i c m i s s i ng va l ue s i n t w o que s t i ons , w e i nput t e d t he m e a n
s c or e f or t he m i s s i ng obs e r va t i ons ba s e d on t ha t que s t i on c om pl e t e d by ot he r pa r t i c i pa nt s . F or
a t t i t ude s t ow a r d w r i t i ng dow n a nd di s c us s i ng one ’ s E O L w i s he s w i t h ot he r s , s om e va l ue s w e r e
m i s s i ng s y s t e m a t i c a l l y : t hos e w ho a ns w e r e d 1 “ s t r ong l y di s a g r e e ” or 2 “ di s a gr e e ” f or “ w he t he r
a n ol de r a dul t s houl d c ons i de r E O L w i s he s i n a dva nc e ” que s t i on w oul d s ki p t he s e t w o que s t i ons .
D e a t h- r e l a t e d know l e dge , a t t i t ude t ow a r d c ons i de r i ng E O L w i s he s i n a dva nc e , a nd de a t h
a nx i e t y w e r e e va l ua t e d us i ng r e pe a t e d m e a s ur e s 2 x 2 A N O V A s ( t r e a t m e nt c ondi t i on by t i m e ) .
D ue t o m i s s i ng va l ue s , r e pe a t e d m e a s ur e s A N O V A s c oul d not be pe r f or m e d f or a t t i t ude s t ow a r d
w r i t i ng dow n a nd di s c us s i ng E O L w i s he s i n a dva nc e . T hus , a t - t e s t w a s us e d t o e x a m i ne t w o
g r oups ’ di f f e r e nc e s a t T 1 f or t he s e t w o out c om e va r i a bl e s . T he c hi - s qua r e t e s t w a s us e d f or t he
va r i a bl e “ w he t he r one di s c us s e d E O L w i s he s l a s t w e e k ” , w hi c h w a s onl y a s ke d a t T 1 .
A f t e r t he s e , pe r pr ot oc ol a na l y s i s w a s a l s o c onduc t e d t o c om pa r e w i t h I T T r e s ul t s .
46
S P S S A U V e r s i on 20.0 onl i ne a ppl i c a t i on s of t w a r e w a s us e d t o pe r f or m a l l a na l y s e s .
R e s u l t s
F i gur e 1 s how s t he f l ow c ha r t of t he pr oc e s s . F or t he I G , i n t he f i r s t a t t e m pt of i nvi t i ng t he
r e t i r e d s t a f f a s s oc i a t i on ’ s ol de r a dul t s t o t he i nf or m a t i on s e s s i on, a t ot a l of 34 ol de r a dul t s c a m e
t o t he s e s s i on dur i ng t w o c ons e c ut i ve da y s . F our di d not m e e t t he e l i g i bi l i t y c r i t e r i a ( t w o a ge d
be l ow 60, a n d t w o r e po r t e d not ha v i ng s om e on e t o di s c us s pr i va t e i s s u e s w i t h ) . A t t he s a m e t i m e ,
one , a l t houg h e l i g i bl e , r e f us e d t o pa r t i c i pa t e due t o a bus y s c he dul e . T hus , a t ot a l of 29
pa r t i c i pa nt s w e r e r e c r ui t e d dur i ng t he f i r s t r ound. A t T 1 a s s e s s m e nt , t he t e a m c ont a c t e d t he
a s s oc i a t i on t o de t e r m i ne i f i t w a s pos s i bl e t o s e nd a not he r r ound of i nvi t a t i ons t o r e c r ui t m or e
pa r t i c i pa nt s t o r e a c h t he s a m pl e s i z e g oa l . H ow e ve r , one pa r t i c i pa nt w ho a t t e nde d t he pr ogr a m
a nd T 1 a s s e s s m e nt c a l l e d t he a s s oc i a t i on, s a y i ng t he pr ogr a m a nd t he a s s e s s m e nt que s t i ons m a de
he r s a d a nd a nx i ous t hi nki ng a bout de a t h- r e l a t e d i s s ue s . T he i nt e r ve nt i oni s t t he n c ont a c t e d t he
pa r t i c i pa nt , t ha nke d he r f or pa r t i c i pa t i ng, of f e r e d c ons ul t a t i on t o de c r e a s e he r a nx i e t y , a nd
r e a s s ur e d he r t ha t i t w a s he r r i g ht not t o c ons i de r , w r i t e dow n, or di s c us s he r E O L w i s he s w i t h
ot he r s . D ue t o t hi s i nc i de nt , t he a s s oc i a t i on de c i de d not t o r e c r ui t m or e pa r t i c i pa nt s but a gr e e d
t ha t t he r e m a i ni ng a s s e s s m e nt s c oul d be done f or t hos e w i l l i ng t o a ns w e r .
A m on g 29 I G pa r t i c i pa nt s , 23 c om pl e t e d a t l e a s t one pr ogr a m s e s s i on, a nd 21 c om pl e t e d
bot h s e s s i ons . O ne pa r t i c i pa nt w ho r e c e nt l y l os t he r hus ba nd r e f us e d t o pa r t i c i pa t e i n t he s e c ond
s e s s i on. t he s e c ond pa r t i c i pa nt w ho di d not c om pl e t e bot h s e s s i ons ha d a f a m i l y he a l t h c r i s i s ( he r
m om g ot hos pi t a l i z e d a nd s he ha d t o l e a ve t he a r e a t o c a r e f or he r ) a f t e r a t t e ndi ng t he f i r s t
s e s s i on. F or t he r e m a i ni ng s i x pa r t i c i pa nt s , t w o w i t hdr e w a f t e r t he ba s e l i ne a s s e s s m e nt ;
i nt e r ve nt i on t i m e c oul d not be a r r a nge d f or t he ot he r f our pe opl e : one w a s hos pi t a l i z e d, t w o w e nt
t o t r a ve l , a nd one w a s bus y . A t ot a l of 19 I G pa r t i c i pa nt s c om pl e t e d t he T 1 a s s e s s m e nt . B e s i de s
47
t w o pe opl e w ho w i t hdr e w , f our di d not a ns w e r t he phone , a nd f our de c l i ne d t o pa r t i c i pa t e i n t he
a s s e s s m e nt .
F or t he C G , w e a ppr oa c he d m or e t ha n 50 ol de r a dul t s i n t hr e e uni ve r s i t i e s dur i ng our
f our - da y r e c r ui t m e nt , a nd 36 m e t t he e l i g i bi l i t y c r i t e r i a ( one r e por t e d not ha vi ng s om e one t o
di s c us s pr i va t e i s s ue s w i t h, a nd none of t he r e s t m e t t he e duc a t i on r e qui r e m e nt ) . A m ong t he s e ,
t w o r e f us e d t o pa r t i c i pa t e due t o a l a c k of i nt e r e s t , w hi l e 34 w e r e w i l l i ng t o pa r t i c i pa t e a nd
s i g ne d t he i nf or m e d c ons e nt . T he P I a nd c oor di na t or not i c e d t ha t ol de r a dul t s w ho c a m e t o t he
a c t i vi t y r oom s of t he r e t i r e d s t a f f a s s oc i a t i ons of t hr e e uni ve r s i t i e s w e r e ve r y s t a bl e , s o t he r e w a s
ve r y l ow pos s i bi l i t y t ha t m or e ol de r a dul t s c oul d be r e c r ui t e d f r om t he s e l oc a t i ons . A f t e r
a ppr oa c hi ng a l l a va i l a bl e ol de r a dul t s i n a c t i vi t y r oom s or t he a s s oc i a t i on ’ s bui l di ng s a nd
r e c r ui t e d 34 pa r t i c i pa nt s , t he i nt e r ve nt i oni s t a nd t he c oor di na t or w e nt t o publ i c pa r ks t r y i ng t o
r e c r ui t m or e pa r t i c i pa nt s . T he t w o a ppr oa c he d m or e t ha n 20 ol de r a dul t s i n t hr e e di f f e r e nt pa r ks ,
but none m e t t he e l i g i bi l i t y : e i t he r t he y w e r e y o unge r t ha n 60 y e a r s ol d or ha d a n e duc a t i on l e ve l
be l ow hi g h s c hool . T hus , a t ot a l of 34 pa r t i c i pa nt s w e r e r e c r ui t e d f or t he C G a nd c om pl e t e d t he
T 0 a s s e s s m e nt . A m ong t he s e , 26 c om pl e t e d t he T 1 a s s e s s m e nt , w hi l e f i ve di d not a ns w e r t he
phone , a nd t hr e e de c l i ne d t he e va l ua t i on.
48
T a bl e 5 s how s t he s oc i o- de m ogr a phi c i nf or m a t i on a nd ba s e l i ne va r i a bl e s of a l l
pa r t i c i pa nt s a nd by I G a nd C G . N o s i g ni f i c a nt di f f e r e nc e s w e r e f ound be t w e e n t he t w o g r oups ’
s oc i o- de m ogr a phi c va r i a bl e s a nd de a t h- r e l a t e d know l e dge a nd a t t i t ude s .
T a b l e 5
P a r t i c i p a n t C h a r a c t e r i s t i c s b y G r o u p a t B a s e l i n e
C h a r a c t e r i s t i c s / V a r i a b l e s T o t a l ( n = 6 3 ) I G ( n = 2 9 ) C G ( n = 3 4 ) p
v a l u e s *
N ( % ) o r M ( S D )
A g e 7 2 . 5 7 ( 7 . 9 8 ) 7 2 . 2 4 ( 7 . 4 0 ) 7 2 . 8 5 ( 8 . 5 5 ) 0 . 7 6 5
M a l e 3 1 ( 4 9 . 2 1 ) 1 2 ( 4 1 . 3 8 ) 1 9 ( 5 5 . 8 8 ) 0 . 2 5 1
E l i g i b l e o l d e r a d u l t s
I G : N = 3 0 C G : N = 3 6
E n r o l l e d i n s t u d y a n d
c o m p l e t e d T 0
I G : N = 2 9 C G : N = 3 4
R e f u s e d
I G : t o o b u s y : N = 1
C G : l a c k o f i n t e r e s t : N = 2
C o m p l e t e d T 1
N = 2 6
D e a t h e d u c a t i o n
N = 2 3
W i t h d r e w
N = 2
D i d n o t p a r t i c i p a t e
i n i n t e r v e n t i o n
H o s p i t a l i z e d : N = 1
T r a v e l l i n g : N = 2
T o o b u s y : N = 1
C o m p l e t e d T 1
N = 1 9
D i d n o t p a r t i c i p a t e
i n T 1
D i d n o t a n s w e r t h e
p h o n e : N = 4
D e c l i n e d : N = 4
A n a l y z e d
N = 2 9
A n a l y z e d
N = 3 4
D i d n o t p a r t i c i p a t e
i n T 1
D i d n o t a n s w e r t h e
p h o n e : N = 5
D e c l i n e d : N = 3
F i g u r e 1 . F l o w d i a g r a m o f t h e s t u d y p r o c e s s a n d s a m p l e s
49
E d u c a t i o n
H i g h s c h o o l a n d b e l o w
A s s o c i a t e ’ s d e g r e e
B a c h e l o r ’ s d e g r e e
M a s t e r ’ s d e g r e e a n d a b o v e
1 0 ( 1 5 . 8 7 )
1 9 ( 3 0 . 1 6 )
3 0 ( 4 7 . 6 2 )
4 ( 6 . 3 5 )
6 ( 2 0 . 6 9 )
7 ( 2 4 . 1 4 )
1 4 ( 4 8 . 2 8 )
2 ( 6 . 9 0 )
4 ( 1 1 . 7 6 )
1 2 ( 3 5 . 2 9 )
1 6 ( 4 7 . 0 6 )
2 ( 5 . 8 8 )
0 . 6 9 1
M a r i t a l S t a t u s
S i n g l e
M a r r i e d
D i v o r c e d
W i d o w e d
1 ( 1 . 5 9 )
4 2 ( 6 6 . 6 7 )
2 ( 3 . 1 7 )
1 8 ( 2 8 . 5 7 )
0 ( 0 . 0 0 )
1 6 ( 5 5 . 1 7 )
2 ( 6 . 9 0 )
1 1 ( 3 7 . 9 3 )
1 ( 2 . 9 4 )
2 6 ( 7 6 . 4 7 )
0 ( 0 . 0 0 )
7 ( 2 0 . 5 9 )
0 . 1 1 6
R e l i g i o u s A f f i l i a t i o n
N o n e
I s l a m
B u d d h i s m
C h r i s t i a n i t y
5 6 ( 8 8 . 8 9 )
1 ( 1 . 5 9 )
5 ( 7 . 9 4 )
1 ( 1 . 5 9 )
2 5 ( 8 6 . 2 1 )
1 ( 3 . 4 5 )
2 ( 6 . 9 0 )
1 ( 3 . 4 5 )
3 1 ( 9 1 . 1 8 )
0 ( 0 . 0 0 )
3 ( 8 . 8 2 )
0 ( 0 . 0 0 )
0 . 4 8 2
F i n a n c i a l S i t u a t i o n
V e r y d i f f i c u l t / D i f f i c u l t
S o s o
C o m f o r t a b l e / V e r y c o m f o r t a b l e
3 ( 4 . 7 6 )
3 5 ( 5 5 . 5 6 )
2 5 ( 3 9 . 6 8 )
0 ( 0 . 0 0 )
1 4 ( 4 8 . 2 8 )
1 5 ( 5 1 . 7 2 )
3 ( 8 . 8 2 )
2 1 ( 6 1 . 7 6 )
1 0 ( 2 9 . 4 1 )
0 . 1 6 2
L i v i n g A l o n e 1 2 ( 1 9 . 3 5 ) 7 ( 2 4 . 1 4 ) 5 ( 1 5 . 1 5 ) 0 . 3 7 2
S e l f - R a t e d H e a l t h ( s c o r e r a n g e 1 - 4 , h i g h e r
s c o r e , b e t t e r h e a l t h )
2 . 9 2 ( 0 . 4 1 ) 3 . 0 0 ( 0 . 2 7 ) 2 . 8 5 ( 0 . 5 0 ) 0 . 1 4 4
K n o w l e d g e
( s c o r e r a n g e 1 - 5 , h i g h e r s c o r e , h i g h e r
k n o w l e d g e l e v e l )
A d v a n c e c a r e p l a n n i n g
L i f e - s u s t a i n i n g t r e a t m e n t
H o s p i c e
2 . 5 4 ( 1 . 2 9 )
3 . 3 7 ( 1 . 0 4 )
3 . 2 2 ( 1 . 3 4 )
2 . 5 2 ( 1 . 4 5 )
3 . 6 2 ( 0 . 9 8 )
3 . 3 8 ( 1 . 4 5 )
2 . 5 6 ( 1 . 1 6 )
3 . 1 5 ( 1 . 0 5 )
3 . 0 9 ( 1 . 2 4 )
0 . 9 0 2
0 . 0 7 0
0 . 3 9 4
A t t i t u d e s
O l d e r a d u l t s s h o u l d … ( s c o r e r a n g e 1 - 5 ,
h i g h e r s c o r e , m o r e f a v o r a b l e a t t i t u d e ) :
C o n s i d e r E O L w i s h e s i n a d v a n c e
W r i t e d o w n w i s h e s i n a d v a n c e
D i s c u s s w i s h e s w i t h o t h e r s i n a d v a n c e
D e a t h a n x i e t y ( s c o r e r a n g e 1 4 - 4 2 , h i g h e r
s c o r e , h i g h e r d e a t h a n x i e t y l e v e l )
3 . 4 9 ( 1 . 0 5 )
3 . 3 4 ( 1 . 7 1 )
3 . 3 6 ( 1 . 2 2 )
1 9 . 6 3 ( 4 . 1 1 )
3 . 5 2 ( 1 . 0 2 )
3 . 4 1 ( 1 . 2 6 )
3 . 3 6 ( 1 . 3 6 )
1 9 . 4 3 ( 4 . 6 5 )
3 . 4 7 ( 1 . 0 8 )
3 . 2 9 ( 1 . 1 2 )
3 . 3 6 ( 1 . 1 3 )
1 9 . 8 1 ( 3 . 6 5 )
0 . 8 6 2
0 . 7 1 6
0 . 9 8 5
0 . 7 1 6
* p v a l u e s f o r t - t e s t a n d c h i - s q u a r e t e s t b e t w e e n I G a n d C G a t b a s e l i n e .
T a bl e 6 s how s t he de s c r i pt i ve s t a t i s t i c s of I G a nd C G of de a t h- r e l a t e d know l e dge a nd
a t t i t ude out c om e s us i ng I T T a na l y s i s . U s i ng r e pe a t e d m e a s ur e s 2 x 2 A N O V A s , t he i nc r e a s e i n
know l e dge on a dva nc e c a r e pl a nni ng of I G c om pa r e d t o C G a t T 1 w a s f ound t o be s t a t i s t i c a l l y
s i g ni f i c a nt ( F = 6.458 , p= 0.014) . A ddi t i ona l l y , us i ng a t - t e s t , a t T 1 , I G pa r t i c i pa nt s ha d a m or e
pos i t i ve a t t i t ude t ow a r d di s c us s i ng E O L w i s he s w i t h ot he r s i n a dva nc e ( p= 0.044) . F or
50
know l e dge on l i f e - s us t a i ni ng t r e a t m e nt a nd hos pi c e , a nd a t t i t ude s t ow a r d c ons i de r i ng a nd w r i t i ng
dow n E O L w i s he s i n a dva nc e , s c or e s r e m a i ne d s t a bl e f r om T 0 t o T 1 f or bot h g r oups .
R e ga r di ng t he be ha vi or of di s c us s i ng E O L w i s he s w i t h ot he r s i n t he pa s t w e e k a t T 1 , f our
I G pa r t i c i pa nt s ( one w i t h c hi l dr e n, one w i t h t he s pous e a nd t he s i s t e r , one w i t h f a m i l y a nd
f r i e nds , a nd one w i t h f r i e nds ) a n d one C G pa r t i c i pa nt ( w i t h f r i e nds ) ha d c onve r s a t i ons a bout
t he i r E O L w i s he s . T he di f f e r e nc e w a s not s i g ni f i c a nt , t houg h, e x a m i ne d us i ng a c hi - s qua r e t e s t
( p= 0.11) .
T a b l e 6
I T T D e s c r i p t i v e S t a t i s t i c s o f I G a n d C G g r o u p s o f D e a t h - R e l a t e d K n o w l e d g e a n d A t t i t u d e s
V a r i a b l e I G ( N = 2 9 ) C G ( N = 3 4 ) F
a
t
b
p
M ( S D ) M ( S D )
K n o w l e d g e
A d v a n c e c a r e p l a n n i n g
T 0
T 1
2 . 5 2 ( 1 . 4 5 )
3 . 6 1 ( 0 . 7 5 )
2 . 5 6 ( 1 . 1 6 )
2 . 7 8 ( 0 . 9 5 )
6 . 4 5 8 0 . 0 1 4
L i f e - s u s t a i n i n g t r e a t m e n t
T 0
T 1
3 . 6 2 ( 0 . 9 8 )
3 . 8 7 ( 0 . 4 9 )
3 . 1 5 ( 1 . 0 5 )
3 . 2 5 ( 0 . 7 4 )
0 . 2 9 6 0 . 5 8 9
H o s p i c e
T 0
T 1
3 . 3 8 ( 1 . 4 5 )
3 . 6 4 ( 0 . 7 1 )
3 . 0 9 ( 1 . 2 4 )
3 . 2 8 ( 0 . 8 3 )
0 . 0 4 9 0 . 8 2 6
A t t i t u d e s
C o n s i d e r E O L w i s h e s i n a d v a n c e
T 0
T 1
3 . 5 2 ( 1 . 0 2 )
3 . 2 8 ( 0 . 8 9 )
3 . 4 7 ( 1 . 0 8 )
3 . 3 2 ( 0 . 8 8 )
0 . 1 0 5 0 . 7 4 7
W r i t e d o w n w i s h e s i n a d v a n c e
T 0
T 1
3 . 4 1 ( 1 . 2 6 )
3 . 1 9 ( 1 . 0 3 )
3 . 2 9 ( 1 . 1 2 )
3 . 3 7 ( 0 . 9 6 )
- 0 . 4 7 6 0 . 6 3 7
D i s c u s s w i t h o t h e r s i n a d v a n c e
T 0
T 1
3 . 3 6 ( 1 . 3 6 )
4 . 0 0 ( 0 . 6 0 )
3 . 3 6 ( 1 . 1 3 )
3 . 3 9 ( 0 . 9 8 )
2 . 1 1 5 0 . 0 4 4
D e a t h a n x i e t y
T 0
T 1
1 9 . 4 3 ( 4 . 6 5 )
1 9 . 4 2 ( 2 . 8 7 )
1 9 . 8 1 ( 3 . 6 5 )
1 9 . 1 1 ( 3 . 9 1 )
0 . 4 9 6 0 . 4 8 4
a . R e p e a t e d m e a s u r e s 2 x 2 A N O V A w a s u s e d .
b . t - t e s t w a s u s e d f o r b e t w e e n g r o u p T 1 a s s e s s m e n t .
P e r pr ot oc ol ( P P ) a na l y s i s w a s f ur t he r c onduc t e d t o c om pa r e w i t h I T T r e s ul t s . P P c a s e s
w e r e de f i ne d a s t hos e w ho c om pl e t e d t he i nt e r ve nt i on pha s e of t he s t udy ( S ha h, 2011) . T hus , a
51
t ot a l of 21 I G a nd 34 C G pa r t i c i pa nt s w e r e i nc l ude d i n t he a na l y s i s .
T a bl e 7 s how s t he de s c r i pt i ve s t a t i s t i c s of I G a nd C G of de a t h- r e l a t e d know l e dge a nd
a t t i t ude out c om e s us i ng P P a na l y s i s , a nd r e s ul t s w e r e s i m i l a r t o t hos e us i ng I T T a na l y s i s . U s i ng
r e pe a t e d m e a s ur e s 2 x 2 A N O V A s , t he i nc r e a s e i n know l e dge on a dva nc e c a r e pl a nni ng of I G
c om pa r e d t o C G a t T 1 w a s f ound t o be s t a t i s t i c a l l y s i g ni f i c a nt ( p= 0.009) . A ddi t i ona l l y , us i ng a t -
t e s t , a t T 1 , I G pa r t i c i pa nt s ha d a m or e pos i t i ve a t t i t ude t ow a r d di s c us s i ng E O L w i s he s w i t h ot he r s
i n a dva nc e ( p= 0.044) . F or know l e dge on l i f e - s us t a i ni ng t r e a t m e nt a nd hos pi c e , a nd a t t i t ude s
t ow a r d c ons i de r i ng a nd w r i t i ng dow n E O L w i s he s i n a dva nc e , s c or e s r e m a i ne d s t a bl e f r om T 0 t o
T 1 f or bot h g r oups .
R e ga r di ng t he be ha vi or of di s c us s i ng E O L w i s he s w i t h ot he r s i n t he pa s t w e e k a t T 1 , f our
I G pa r t i c i pa nt s ( one w i t h c hi l dr e n, one w i t h t he s pous e a nd t he s i s t e r , one w i t h f a m i l y a nd
f r i e nds , a nd one w i t h f r i e nds ) a n d one C G pa r t i c i pa nt ( w i t h f r i e nds ) di s c us s e d E O L w i s he s a nd
t hi s w a s s i g ni f i c a nt us i ng t he c hi - s qua r e t e s t ( p= 0.044) unde r P P a na l y s i s .
T a b l e 7
P P D e s c r i p t i v e S t a t i s t i c s o f I G a n d C G g r o u p s o f D e a t h - R e l a t e d K n o w l e d g e a n d A t t i t u d e s
V a r i a b l e I G ( N = 2 1 ) C G ( N = 3 4 ) F
a
t
b
p
M ( S D ) M ( S D )
K n o w l e d g e
A d v a n c e c a r e p l a n n i n g
T 0
T 1
2 . 5 7 ( 1 . 4 0 )
3 . 7 8 ( 0 . 8 2 )
2 . 5 6 ( 1 . 1 6 )
2 . 7 8 ( 0 . 9 5 )
7 . 3 6 3 0 . 0 0 9
L i f e - s u s t a i n i n g t r e a t m e n t
T 0
T 1
3 . 7 1 ( 0 . 8 5 )
4 . 0 0 ( 0 . 5 2 )
3 . 1 5 ( 1 . 0 5 )
3 . 2 5 ( 0 . 7 4 )
0 . 3 8 1 0 . 5 4 0
H o s p i c e
T 0
T 1
3 . 4 8 ( 1 . 4 0 )
3 . 7 1 ( 0 . 8 3 )
3 . 0 9 ( 1 . 2 4 )
3 . 2 8 ( 0 . 8 3 )
0 . 0 1 9 0 . 8 9 0
A t t i t u d e s
C o n s i d e r E O L w i s h e s i n a d v a n c e
T 0
T 1
3 . 6 7 ( 0 . 9 7 )
3 . 2 7 ( 1 . 0 4 )
3 . 4 7 ( 1 . 0 8 )
3 . 3 2 ( 0 . 8 8 )
0 . 6 3 3 0 . 4 3 0
W r i t e d o w n w i s h e s i n a d v a n c e
T 0
T 1
3 . 2 4 ( 1 . 3 5 )
3 . 1 9 ( 1 . 0 3 )
3 . 2 9 ( 1 . 1 2 )
3 . 3 7 ( 0 . 9 6 )
- 0 . 4 7 6 0 . 6 3 7
D i s c u s s w i t h o t h e r s i n a d v a n c e
52
T 0
T 1
3 . 3 5 ( 1 . 2 7 )
4 . 0 0 ( 0 . 6 0 )
3 . 3 6 ( 1 . 2 3 )
3 . 3 9 ( 0 . 9 8 )
2 . 1 1 5 0 . 0 4 4
D e a t h a n x i e t y
T 0
T 1
1 9 . 4 3 ( 4 . 6 5 )
1 9 . 4 2 ( 2 . 8 7 )
1 9 . 8 1 ( 3 . 6 5 )
1 9 . 1 1 ( 3 . 9 1 )
0 . 5 6 4 0 . 4 5 6
a . R e p e a t e d m e a s u r e s 2 x 2 A N O V A w a s u s e d .
b . t - t e s t w a s u s e d f o r b e t w e e n g r o u p T 1 a s s e s s m e n t .
D i s c u s s i on
T o t he be s t of our know l e dge , our pr ogr a m i s one of t he f e w de a t h e duc a t i on pr ogr a m s
pr o vi de d t o c om m uni t y - d w e l l i ng C hi ne s e ol de r a dul t s w hi l e e x a m i ni n g i t s e f f e c t s on ol de r a du l t s ’
de a t h- r e l a t e d know l e dge , a t t i t ude s , a nd a dva nc e pl a nni ng be ha vi or s . T he i nc r e a s e i n know l e dge
on a dva nc e d c a r e pl a nni ng of I G c om pa r e d t o C G a t T 1 w a s s i g ni f i c a nt , a nd I G pa r t i c i pa nt s ha d a
m or e pos i t i ve a t t i t ude t ow a r d di s c us s i ng E O L w i s he s i n a dva nc e . A l s o, f our I G pa r t i c i pa nt s
di s c us s e d t he i r E O L w i s he s w i t h f a m i l i e s or f r i e nds dur i ng t he pa s t w e e k a t T 1 , c om pa r e d t o onl y
one pe r s on i n C G . T hi s di f f e r e nc e w a s not s i g ni f i c a nt us i ng I T T a na l y s i s but s i g ni f i c a nt us i ng P P
a na l y s i s .
P r e vi ous r e s e a r c h a l s o s how e d s i m i l a r pos i t i ve r e s ul t s on a dva nc e pl a nni ng know l e dge ,
a t t i t ude , a nd be ha vi or . F or e x a m pl e , t he c hur c h- ba s e d de a t h e duc a t i on i nt e r ve nt i on de ve l ope d by
S un e t a l . ( 2017) f or C hi ne s e a nd V i e t na m e s e A m e r i c a ns g e ne r a t e d s i g ni f i c a nt i nc r e a s e s i n
pa r t i c i pa nt s ’ A D - r e l a t e d know l e dge a nd i nt e nt i on a nd he a l t h c a r e pr ox y di s c us s i on. T he s e r e s ul t s
s how e d t ha t i t i s pr om i s i ng t o c onduc t de a t h e duc a t i on a nd ha ve de a t h- r e l a t e d di s c us s i ons w i t h
ol de r C hi ne s e c om m uni t y r e s i de nt s t o i nc r e a s e t he i r know l e dge a nd f a c i l i t a t e t he i r pos i t i ve
a t t i t ude s t ow a r d m a ki ng E O L pl a ns i n a dva nc e . M e a nw hi l e , r e ga r di ng di s c us s i on of E O L w i s he s
w i t h ot he r s , c om m uni t y r e s i de nt s m i g ht ha ve t houg ht t ha t t he y w e r e s t i l l he a l t hy , a nd t he r e f or e ,
i t w a s not ne c e s s a r y t o ha ve s uc h c onve r s a t i ons a t t hi s m om e nt . I n t e r m s of doc um e nt i ng E O L
w i s he s , A D f or m s do not ha ve l e ga l i m pl i c a t i ons i n C hi na , w hi c h m i g ht ha ve r e duc e d m ot i va t i on
f or pa r t i c i pa nt s t o r e c or d t he i r w i s he s i n w r i t i ng .
53
R e ga r di ng de a t h a nx i e t y , i t r e m a i ne d s t a bl e f r om T 0 t o T 1 f or bot h g r oups , w hi c h c oul d be
due t o our s m a l l s a m pl e s i z e . A ddi t i ona l l y , s c or e s of bot h g r oups a t ba s e l i ne w e r e a l r e a dy l ow ,
l e a vi ng ve r y s m a l l r oom f or i m pr ove m e nt a f t e r t he i nt e r ve nt i on. I t i s a l s o not e w or t hy t ha t t he
va r i a bl e ’ s m i s s i ng r a t e w a s hi g h: a m ong 45 pa r t i c i pa nt s w ho c om pl e t e d T 1 a s s e s s m e nt , onl y 36
c om pl e t e d t he de a t h a nx i e t y que s t i ons , r e s ul t i ng i n a n 80.0% c om pl e t i on r a t e a m ong T 1
c om pl e t e r s a nd a 57.1% c om pl e t i on r a t e a m ong a l l 63 pa r t i c i pa nt s of t hi s s t udy . W e t houg ht
a bout t he pos s i bi l i t y t ha t t hos e w ho di d not a ns w e r t he s e que s t i ons m i g ht ha ve a hi g he r de a t h
a nx i e t y l e ve l t ha n pe opl e w ho c om pl e t e d t he s e que s t i ons ; t hus , t he y e i t he r de c l i ne d t he w hol e T 1
a s s e s s m e nt or t he de a t h a nx i e t y que s t i ons due t o t he di s c om f or t . H ow e ve r , w e t e s t e d de a t h
a nx i e t y l e ve l a t ba s e l i ne be t w e e n 36 c om pl e t e r s a nd 27 non- c om pl e t e r s , but no s i g ni f i c a nt
di f f e r e nc e s w e r e f ound a t ba s e l i ne .
T he a t t e nda nc e r a t e f or I G pa r t i c i pa nt s w a s 79.3% f or one s e s s i on a nd 72.4% f or t w o
s e s s i ons , but t he ove r a l l T 1 a s s e s s m e nt c om pl e t i on r a t e s w e r e onl y 65.5% f or I G a nd 76.5% f or
C G . T he l ow a s s e s s m e nt c om pl e t i on r a t e c oul d be be c a us e de a t h- r e l a t e d t opi c s a r e s t i l l
i nt i m i da t i ng f or m a ny C hi ne s e ol de r a dul t s , a nd t hus t he y c hos e t o de c l i ne t he a s s e s s m e nt . I t
c oul d a l s o be due t o t he us e of phone c a l l s i ns t e a d of i n- pe r s on a s s e s s m e nt s . P e opl e m i g ht not
w a nt t o pi c k up phone s w i t h a n unknow n phone num be r ; s om e of our pa r t i c i pa nt s onl y ha d or
l e f t hom e phone num be r s , a nd i t c oul d be c ha l l e ngi ng t o c ont a c t t he m i f t he y w e r e not hom e . I n
t he f ut ur e , be t t e r w a y s t o m a i nt a i n c om m uni t y r e s i de nt pa r t i c i pa nt s s houl d be t houg ht a bout a nd
pl a nne d a he a d. F or e x a m pl e , f or t hos e ha vi ng c e l l phone s , t e xt m e s s a g e s c a n be s e nt r e gul a r l y t o
ke e p t he c onne c t i on a nd r e m i nd t he m t o c ont i nue pa r t i c i pa t i ng i n t he pr og r a m . F or t hos e onl y
ha vi ng hom e phone s , pe r m i s s i on t o ha ve t he hom e a ddr e s s a nd g o t o t he i r hom e s f or a s s e s s m e nt
c oul d be s oug ht . A l s o, l a r ge r i nc e nt i ve s a t c om pl e t i on m a y be us e d t o pr ovi de m or e m ot i va t i on
54
f or i ndi vi dua l s t o c om pl e t e .
R e s e a r c he r s ne e d t o be pr e pa r e d t o a ddr e s s ne ga t i ve e m ot i ons a r i s i ng f r om E O L
c onve r s a t i ons . I n our s t udy , one pa r t i c i pa nt r e c e nt l y l os t he r hus ba nd. T he i nt e r ve nt i oni s t
e m pha s i z e d t ha t s he di d not ne e d t o a ns w e r s om e que s t i ons or e ve n c ont i nue pa r t i c i pa t i ng i n t he
pr ogr a m i f s he pr e f e r r e d not t o. S he a ns w e r e d m os t of t he que s t i ons but ha d e m ot i ona l m om e nt s
t a l ki ng a bout he r hus ba nd ’ s de a t h a nd s a i d t ha t s he di d not ha ve t he e ne r gy t o t hi nk a bout he r
c a r e gi vi ng i s s ue s a t t hi s m om e nt . A f t e r s he e xpr e s s e d m i s s i ng he r hus ba nd ve r y m uc h, t he
i nt e r ve nt i oni s t us e d t he e m pt y c ha i r t e c hni que ( S ha l l c r os s , 2009) t o l e t he r i m a g i ne t ha t he r
hus ba nd w a s s i t t i ng i n a n e m pt y c ha i r i n t he r oom , a s ki ng he r t o s ha r e he r f e e l i ng s w i t h hi m a nd
s a y g oodby e t o hi m . T he pa r t i c i pa nt t ha nke d t he i nt e r ve nt i oni s t a nd de c l i ne d t he s e c ond s e s s i on
i n or de r not t o a r ous e t he s a d m e m or i e s onc e m or e . A not he r i nc i de nt w a s de s c r i be d i n t he
M e t hods s e c t i on: a n I G pa r t i c i pa nt s t a t e d t ha t t he i nt e r ve nt i on a nd t he a s s e s s m e nt que s t i ons
m a de he r s a d by c ont i nuous l y a s ki ng he r t o t hi nk a bout de a t h a nd dy i ng. T he i nt e r ve nt i oni s t ha d
a c ouns e l i ng s e s s i on w i t h he r ove r a l l t he phone a nd c a l m e d he r , w hi l e e x pl a i ni ng t he pr ogr a m ’ s
goa l onc e m or e a nd r e m i nd i ng he r of t he r i ght s not t o a ns w e r a ny que s t i on s i f s he di d not w a n t t o.
I n a s t udy a m ong ol de r a dul t r e s i de nt s i n l ong - t e r m c a r e f a c i l i t i e s i n T a i w a n, L i n e t a l . ( 2014)
a l s o obs e r ve d t ha t s om e pa r t i c i pa nt s be c a m e e m ot i ona l a nd s a d w he n r e c a l l i ng t he pa s t , w hi c h
t he y ove r c a m e w i t h s uppor t f r om t r a i ne d he a l t h c a r e r e s e a r c he r s , a nd t he y a ppr e c i a t e d t he
oppor t uni t y t o s ha r e t he i r s t or i e s a nd l e t t he i r voi c e s be he a r d. T he s e r e m i nd f ut ur e r e s e a r c he r s
a nd pr a c t i t i one r s t o c a r e f ul l y ha ndl e s i t ua t i ons l i ke t he s e , pos s i bl y t hr oug h of f e r i ng a ddi t i ona l
c ons ul t a t i on s e s s i ons t o he l p de c r e a s e t he i r a nx i e t y a nd pr ovi de e m ot i ona l s uppor t .
A ddi t i ona l l y , t he l a t t e r ol de r a dul t pa r t i c i pa nt i n our s t udy w a s w i dow e d a nd l i ve d a l one .
D ur i ng he r t w o s e s s i ons , s he de s c r i be d he r l a t e - l i f e a s c ha l l e ngi ng a nd f a c i ng di f f i c ul t i e s i n
55
doi ng g ood t o s oc i e t y us i ng he r r e m a i ni ng t i m e a nd e ne r gy . M or e e m ot i ona l a nd ot he r t y p e s of
s uppor t s houl d be pr ovi de d t o ol de r a dul t c om m uni t y r e s i de nt s w ho ha ve s pe c i a l s i t ua t i ons ( e .g.,
w i dow e d, l i vi ng a l one , l os i ng t he onl y c hi l d) , t o ke e p t he m a c c om pa ni e d, he l p t he m f i nd
m e a ni ng a nd pur pos e i n l i f e , m a i nt a i n a pos i t i ve out l ook, a nd m e e t t he l ove , be l ongi ng , a nd s e l f -
e s t e e m ne e ds a s de s c r i be d by M a s l ow ( M a s l ow , 1943; 1954) .
O ne l i m i t a t i on of t hi s s t udy i s t he s m a l l s a m pl e s i z e , a nd t hus t he f i ndi ng s m i g ht not be
g e ne r a l i z e d t o ot he r r e gi ons i n C hi na or ot he r C hi ne s e popul a t i ons i n t he w or l d. A ddi t i ona l l y ,
due t o l i m i t e d t i m e a nd hum a n r e s our c e s , t he t e a m di d not i nc l ude f a m i l y m e m be r s or ot he r
l ove d one s i n t he pr ogr a m , a l t houg h ol de r a dul t pa r t i c i pa nt s w e r e e nc our a ge d t o di s c us s w ha t
t he y l e a r ne d f r om t hi s pr ogr a m a nd t he i r t houg ht s on de a t h a nd dy i ng t o ot he r s a f t e r t he pr ogr a m .
T hi s s t udy ha s bot h r e s e a r c h a nd pr a c t i c e i m pl i c a t i ons . T hi s pi l ot s t udy s how e d t ha t de a t h
e duc a t i on i s pr om i s i ng i n i nc r e a s i ng ol de r C hi ne s e c om m uni t y r e s i de nt s ’ de a t h- r e l a t e d
know l e dge a nd f a c i l i t a t i ng t he i r pos i t i ve a t t i t ude s t ow a r d a dva nc e pl a nni ng . I n t he f ut ur e , s t udi e s
on a l a r ge r s c a l e w i t h a m or e r i gor ous s t udy de s i gn ( i .e ., r a ndom i z e d c ont r ol l e d t r i a l s ) t o e x a m i ne
t he i nt e r ve nt i on ’ s e f f i c a c y a nd e f f e c t i ve ne s s s houl d be c onduc t e d t o a dd t o t he body of de a t h
e duc a t i on l i t e r a t ur e f or C hi ne s e popul a t i ons . P r a c t i c e w i s e , s om e r e c om m e nda t i ons f or f ut ur e
de a t h e duc a t i on t o t he C hi ne s e w e r e de s c r i be d a bove , s uc h a s m a i nt a i ni ng c onne c t i on t o
pa r t i c i pa nt s t hr ough t e x t m e s s a ge s t o de c r e a s e t he dr opout r a t e , pr ovi di ng e m ot i ona l s uppor t t o
pa r t i c i pa nt s w ho ha ve e m ot i ona l m om e nt s t a l ki ng a bout de a t h a nd dy i ng, pr ovi di ng de a t h
e duc a t i on t o g r oups w i t h c e r t a i n c ondi t i ons ( e .g., l i vi ng a l one , ha vi ng l os t t he onl y c hi l d) .
R e ga r di ng r e c r ui t m e nt , w e hi g hl y r e c om m e nd c ol l a bor a t i ng w i t h e i t he r uni ve r s i t i e s or
c om m uni t y - ba s e d or ga ni z a t i ons t o he l p r e c r ui t ol de r a dul t pa r t i c i pa nt s , us i ng t he i r e x i s t i ng
c ont a c t c ha nne l s . T he i nt e r ve nt i on s houl d a l s o be de l i ve r e d i n a non- t hr e a t e ni ng s e t t i ng , w i t h
56
pr e pa r a t i ons s uc h a s t e a a nd f r ui t t o he l p c r e a t e a f r i e ndl y c onve r s a t i ona l e nvi r onm e nt , a nd be
de l i ve r e d by t r a i ne d t he r a pi s t s / s oc i a l w or ke r s due t o pot e nt i a l ps y c h ol ogi c a l s t r e s s .
57
C h ap t e r 4: T h e A p p l i c at i on of C h i n e s e G o Wi s h C ar d s G am e am on g C om m u n i t y- D w e l l i n g
C h i n e s e O l d e r A d u l t s
I n t r od u c t i on
W i t h t he i m pr ove m e nt of l i vi ng s t a nda r ds , m or e a nd m or e C hi ne s e pe opl e ha ve be c om e
a w a r e of t he i m por t a nc e of bot h t he “ g ood l i f e ” a nd t he “ g ood de a t h ” ( L i u e t a l ., 2019) . I n r e c e nt
y e a r s , de a t h e duc a t i on i n C hi na ha s be e n pr om ot e d a s e duc a t i on f or a l l , t o i nc r e a s e t he publ i c ’ s
know l e dge on di f f e r e nt E O L c a r e c hoi c e s a nd m a ke pl a ns a nd c om m uni c a t e w i t h t he l ove d one s
i n a dva nc e ( C hi , 2018) . H ow e ve r , de a t h t a boo s t i l l w i de l y e x i s t s i n C hi ne s e s oc i e t y ( H a n e t a l .,
2020) , m a ki ng i t c ha l l e ngi ng t o ha ve de a t h- r e l a t e d di s c us s i ons w i t h t he g e ne r a l ol de r a dul t
popul a t i on.
O n e pos s i bl e a pp r o a c h f or i ni t i a t i ng s uc h di f f i c u l t c on ve r s a t i on s i s hy p o t h e t i c a l s c e n a r i o s ,
by a s ki ng pe opl e w ha t t he y w oul d t hi nk or do unde r c e r t a i n c i r c um s t a nc e s . I t m i g ht be di f f i c ul t
f or pe opl e t o di r e c t l y t a l k a bout de a t h a nd dy i ng w i t hout g ui da nc e , w hi l e s c e na r i os c oul d he l p
t he m e xpr e s s pr e f e r e nc e s ( G a l l a ghe r , 2006) . A ddi t i ona l l y , f or c om m uni t y r e s i de nt s , w ho a r e
c om pa r a t i ve l y he a l t hi e r t ha n pa t i e nt s i n he a l t h c a r e s e t t i ng s , i t i s vi t a l t o de c r e a s e t he i r de a t h
a nx i e t y w he n pa r t i c i pa t i ng i n t he de a t h e duc a t i on a c t i vi t i e s . I n ot he r w or ds , s uc h c onve r s a t i ons
s houl d ha ppe n i n a l e s s t hr e a t e ni ng w a y a nd a non- c onf r ont a t i ona l s e t t i ng .
T he G o W i s h c a r ds g a m e c a n be one i de a l opt i on t o f a c i l i t a t e de a t h- r e l a t e d di s c us s i ons
w i t h ol de r c om m uni t y r e s i de nt s . D e ve l ope d i n t he U ni t e d S t a t e s , t he g a m e i s a n i nt e r a c t i ve t ool
t o he l p pe opl e ha ve c onve r s a t i ons a bout E O L c a r e ( M e nki n, 2007) . T he i ni t i a l E ng l i s h ve r s i on
G o W i s h ha s 40 c a r ds , w hi l e de ve l opi ng t he C hi ne s e ve r s i on, t he C hi ne s e A m e r i c a n C oa l i t i on
f or C om pa s s i ona t e C a r e ( C A C C C , ht t ps : / / w w w .c a c c c - us a .or g/ ) i nc r e a s e d t he c a r d num be r t o 54.
A m ong t he s e , 52 c a r ds r e pr e s e nt f our di f f e r e nt t y p e s of E O L w i s he s ( i .e ., phy s i c a l ,
58
ps y c h ol ogi c a l / s pi r i t ua l , s oc i a l , f i na nc i a l ) pr i nt e d on e ve r y s i ng l e c a r d, a nd a not he r t w o c a r ds
w e r e ope n f or pa r t i c i pa nt s t o a dd a ddi t i ona l w i s he s . T o pl a y t he g a m e , a pa r t i c i pa nt i s a s ke d t o
pi c k c a r ds ( w i s he s ) t ha t a r e m os t i m por t a nt t o t he m a t E O L a nd di s c us s t he r e a s ons be hi nd t he
s e l e c t i on a nd w ha t s houl d be w or ke d on s t a r t i ng f r om t hi s m om e nt . S o f a r , i t s us e a m ong l a t e -
s t a ge c a nc e r pa t i e nt s i n C hi na ha s be e n doc um e nt e d a s pa r t of de a t h e duc a t i on f or t hi s popul a t i on;
pa r t i c i pa nt s r e por t e d t ha t t he g a m e w a s e a s y t o pl a y a nd us e f ul i n l e t t i ng t he i r voi c e s be he a r d
( C he ng e t a l ., 2018; H e , 2021; L i u e t a l ., 2019) . R e ga r di ng i t s us e a m ong c om m uni t y r e s i de nt s ,
t o our know l e dge , t he g a m e w a s us e d by t he C A C C C i n t he U ni t e d S t a t e s ; a t t e nda nt s i nc l ude d
bot h ol de r a dul t s a nd H C P s w ho w e r e i nt e r e s t e d i n t hi s t opi c . I t ha s not be e n us e d a m ong ol de r
c om m uni t y r e s i de nt s i n C hi na .
T he a i m of t hi s s t udy i s t o r e por t t he us e of C hi ne s e G o W i s h c a r ds ( a l s o c a l l e d H e a r t t o
H e a r t C a r ds ) a m ong a g r oup of ol de r C hi ne s e c om m uni t y r e s i de nt s i n L a nz hou, C hi na , i nc l udi ng
t he pa r t i c i pa nt s ’ s e l e c t i on of c a r ds , t he i r r e a s ons be hi nd t he c hoi c e , a nd di f f i c ul t i e s i n a c hi e vi ng
c e r t a i n w i s he s a nd w ha t c oul d be done a t t hi s m om e nt t o he l p a c hi e ve t he m l a t e r .
M e t h od s
S t u d y D e s i gn
T hi s i s a qua l i t a t i ve s t udy i n w hi c h pa r t i c i pa nt s pl a y e d a g a m e a nd a ns w e r e d t he
i nt e r ve nt i oni s t ’ s que s t i ons w hi l e be i ng voi c e - r e c or de d.
P ar t i c i p an t s
T he G o W i s h c a r ds g a m e w a s us e d a s pa r t of “ M y L i f e , M y W i s he s ” de a t h e duc a t i on
pr ogr a m pr ovi de d t o 23 ol de r C hi ne s e c om m uni t y r e s i de nt s i n L a nz hou, C hi na . D e t a i l e d
r e c r ui t m e nt a nd pr ogr a m i nf or m a t i on c a n be f ound i n C ha pt e r 3. T he pr ogr a m ha d t w o s e s s i ons ,
a nd t he g a m e w a s pl a y e d i n t he s e c ond s e s s i on. A m ong 23 pa r t i c i pa nt s , 20 pa r t i c i pa t e d i n t he
59
g a m e . T w o ol de r a dul t s di d not a t t e nd t he s e c ond s e s s i on, w hi l e one pa r t i c i pa nt ha d e y e i s s ue s
a nd t hus ha d c ha l l e nge s s e l e c t i ng c a r ds .
P r oc e d u r e s
T he g a m e w a s c onduc t e d i n a n a c t i vi t y r oom of t he r e t i r e d s t a f f a s s oc i a t i on of L a nz hou
U ni ve r s i t y . T o e ns ur e pr i va c y , onl y t he i nt e r ve nt i oni s t a nd t he ol de r a dul t pa r t i c i pa nt w e r e i n t he
r oom . B e f or e pl a y i ng c a r ds , a pa r t i c i pa nt w a s s e r ve d a c up of t e a . T he i nt e r ve nt i oni s t i nt r oduc e d
t he g a m e a nd a s ke d f or pe r m i s s i on t o a udi o r e c or d t he s e s s i on. T he r e a r e f our t y p e s of E O L
w i s he s on t he c a r ds ( i .e ., phy s i c a l , ps y c h ol og i c a l / s pi r i t ua l , s oc i a l , a nd f i na nc i a l ) , a nd t he
i nt e r ve nt i oni s t w e nt t hr oug h f our t y p e s one a f t e r a not he r . F or e a c h t y p e , t he i nt e r ve nt i oni s t f i r s t
pl a c e d a l l 13 c a r ds of t hi s t y p e on t he t a bl e a nd a s ke d t he pa r t i c i pa nt t o c hoos e t he t hr e e m os t
i m por t a nt c a r ds i f not t oo m uc h t i m e i s l e f t i n l i f e . A f t e r t hr e e c a r ds w e r e c hos e n, t he
i nt e r ve nt i oni s t a s ke d t he m t o e x pl a i n t he r e a s ons be hi nd t he s e l e c t i on, di f f i c ul t i e s i n a c hi e vi ng
c e r t a i n w i s he s , a nd w ha t c oul d be done f r om t hi s m om e nt t o he l p a c hi e ve t he s e w i s he s i n t he
f ut ur e . T he i nt e r ve nt i oni s t a l s o a s ke d one pa r t i c i pa nt t o c hoos e t he s i ng l e m os t i m por t a nt w i s h i n
e a c h t y p e . T he i nt e r ve nt i oni s t w e nt t hr ough a l l f our t y p e s of c a r ds one a f t e r a not he r . T he
i nt e r ve nt i oni s t a l s o a s ke d i f t he y ha d a ny ot he r w i s he s t ha t w e r e not s how n on e x i s t i ng c a r ds .
D at a A n al ys i s
T he t hr e e m os t i m por t a nt w i s he s a nd t he t op 1 w i s h w e r e de s c r i be d. A l l t r a ns c r i pt s w e r e
a udi o- r e c or de d a nd t r a ns c r i be d ve r ba t i m , f i r s t us i ng a n onl i ne t r a ns c r i pt i on t ool
( ht t ps : / / w w w .i f l y r e c .c om / ) a nd t he n c he c ke d by a c ol l e ge s t ude nt , w ho w a s na ï ve t o t he pr ogr a m
a nd t r a i ne d by t he i nt e r ve nt i oni s t on t he qua l i t a t i ve a na l y s i s . T he i nt e r ve nt i oni s t t he n doubl e -
c he c ke d t he t r a ns c r i pt s . P a r t i c i pa nt s ’ e x pl a na t i ons a f t e r t he s e l e c t i on w e r e quot e d i n t he r e s ul t s
s e c t i on, t r a ns l a t e d f r om C hi ne s e t o E ngl i s h by t he P I .
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R e s u l t s
S e l e c t i on s of t h e M os t I m p or t an t Wi s h e s
T a bl e 7 s how s t he pa r t i c i pa nt s ’ ove r a l l s e l e c t i on of t he t hr e e m os t i m por t a nt w i s he s a nd
t he s i ng l e m os t i m por t a nt w i s h i n e a c h t y p e a t E O L . A l l but s e ve n c a r ds w e r e c hos e n a t l e a s t
onc e a s t he t op t hr e e i m por t a nt w i s he s .
T ab l e 7
P ar t i c i pan t s ’ S e l e c t i on of t h e M os t I m por t an t E O L W i s h e s
Wi s h e s N am on g
T op 3
N = T op 1
P h ys i c al
I w an t a d oc t or I c an t r u s t an d n i c e n u r s e s . 8 5
I w an t t o b e k e p t c l e an an d c om f or t ab l e . 8 3
I f I ’ m goi n g t o d i e an yw ay, I d on ’ t w an t t o b e k e p t
al i ve b y m ac h i n e s .
8 2
I don’ t w a nt t o s uf f e r . 6 3
I w a nt t o know w ha t ’ s g oi ng t o ha ppe n ne x t . 6 2
I w a nt t o l ook ni c e . 6 0
I don’ t w a nt t o s uf f e r f r om s hor t ne s s of br e a t h. 3 2
I w a nt t o pa r t i c i pa t e i n t he pl a nni ng of m y he a l t h c a r e . 3 2
I w a nt m y f a m i l y t o br i ng m e t he f ood t ha t I l i ke . 3 0
I w a nt t o be a l e r t w he n I di e . 3 0
I w a nt t o di s c us s w he t he r or not t o dona t e m y or g a ns a nd
body .
3 0
I w a nt t o be ke pt w a r m . 2 0
I w a nt t o c om pl e t e a n A dva nc e H e a l t h C a r e
D i r e c t i ve / P O L S T / M O L S T /
1 1
P s yc h ol ogi c al / S p i r i t u al
I w an t t o m ai n t ai n m y d i gn i t y. 14 7
I w an t t o d i e w i t h ou t r e gr e t . 13 5
I w an t t o t al k ab ou t w h at I h ave d on e i n m y l i f e . 8 1
I w a nt t o l i s t e n t o t he m us i c I l i ke . 7 1
I w a nt t o be f r e e f r om a nxi e t y . 6 2
D on ’ t c r y w hi l e I a m dy i ng or a r ound m y body a f t e r I
di e .
4 1
I w a nt t o t a l k a bout w ha t I ’ m a f r a i d of ( i nc l udi ng dy i ng) . 2 1
I w a nt t o t a l k w i t h s om e one a bout m y s pi r i t ua l ne e ds . 2 0
I w oul d l i ke t o ha ve a r e l i gi ous obj e c t ne x t t o m y be d. 1 1
A f t e r I di e , don’ t t ouc h m y body f or _______ hour s . 1 1
I w a nt s om e one t o pr a y w i t h m e . 1 0
61
I w a nt s om e one t o c ha nt or pr a y a f t e r I di e . 1 0
D on ’ t put m y body i n t he f r e e z e r unt i l 8 hour s a f t e r I di e . 0 0
S oc i al
I d on ’ t w an t t o b e a b u r d e n t o m y f am i l y. 14 8
I w an t m y f am i l y t o ge t al on g. 14 6
I w an t m y f am i l y t o r e s p e c t m y w i s h e s . 7 2
I don’ t w a nt t o di e a l one . 6 1
I w a nt a c ha nc e t o he l p ot he r s . 6 1
I w a nt m y f a m i l y t o be e m ot i ona l l y pr e pa r e d f or m y
de a t h.
3 1
I w a nt m y f a m i l y t o r e m e m be r t he ha ppy t i m e s . 3 1
I w a nt a c ha nc e t o s a y “ T ha nk y o u/ I l ove y o u/ I ’ m s or r y ” . 3 0
I w a nt a c ha nc e t o s a y “ g oodby e ” ( t o _______) . 1 0
I t ’ s ok i f m y l ove d one s c r y or l a ugh a r ound m e . 1 0
I w a nt m y f a m i l y t o know w ha t dy i ng m e a ns t o m e . 0 0
I w a nt m y f a m i l y a nd f r i e nds a r ound m e . 0 0
I w a nt s om e one t o hug m e . 0 0
F i n an c i al
I w an t p l e as an t an d q u i e t s u r r ou n d i n gs . 13 7
I w an t m y f i n an c e s t o b e i n or d e r . 11 1
I w an t t o b e ab l e t o go ou t s i d e . 10 4
I ’ d l i k e t o t r ave l t o _______ b e f or e I d i e . 8 3
I do/ don ’ t w a nt t o di e a t hom e . 4 2
I w a nt t o t a ke c a r e of unf i ni s he d bus i ne s s . 4 1
I w a nt m y f a m i l y t o know w he r e m y w i l l i s . 3 0
I ’ d l i ke a r oom w i t h w i ndow s . 3 0
P l e a s e c onduc t onl y ______ r e l i g i ous r i t ua l s a f t e r m y
de a t h.
2 2
I w a nt t o c om pl e t e or r e vi s e m y w i l l . 1 0
I w a nt e ve r y t hi ng r e a dy f or m y f une r a l . 0 0
I w a nt s om e one t o a dvoc a t e f or m e w he n I ne e d he l p. 0 0
I w a nt m y pe t s w i t h m e . 0 0
I n t he phy s i c a l c a r e t y p e , t he w i s h m os t l y r a nke d a s t he t op 1 w a s “ I w a nt a doc t or I c a n
t r us t a nd ni c e nur s e s ” ( n= 5) . A s pa r t i c i pa nt s s a i d:
“ F or e x a m pl e , i f I w e r e s e r i ous l y i l l i n t he hos pi t a l , I w oul d l ook up t o m y doc t or s a nd
l e a ve m y s e l f t o t he m . W he t he r t he y a r e doc t or s or nur s e s , t he y s houl d be ni c e … a nd t e l l
m e m y s i t ua t i ons a nd w ha t I s houl d do t o c or por a t e t he i r w or k. ” ( L X Z , M a l e )
62
“ D oc t or s I e nc ount e r e d … s om e w e r e ve r y ni c e but s om e w e r e not t ha t g ood. O f c our s e I
w a nt doc t or s a nd nur s e s t o be m or e pa t i e nt , a nd t e l l m e t hor oughl y how I w i l l be t r e a t e d. ”
( W Q P , F e m a l e )
I n t he ps y c h ol ogi c a l / s pi r i t ua l t y p e of w i s he s , “ I w a nt t o m a i nt a i n m y di g ni t y ” ( n= 7) a nd
“ I w a nt t o di e w i t hout r e gr e t ” ( n= 5) w e r e m os t f r e que nt l y s e l e c t e d a s t he t op 1 w i s h. H ow e ve r ,
pa r t i c i pa nt s ha d di f f e r e nt de f i ni t i ons of w ha t di g ni t y m e a ns a t E O L . A s t he y s a i d:
“ I t m e a ns t he r e a r e pe opl e a r ound y o u a nd t o c a r e f or y o u. ” ( G Q H , F e m a l e )
“ I don ’ t w a nt t o di e w i t h pa i n. I t w oul d be e x t r e m e l y di s c om f or t f or m e i f I l i e i n be d but
c a nnot e a t or dr i nk a ny m or e . ” ( T D Q , M a l e )
“ F or m e i t m e a ns not dy i ng e m ba r r a s s i ng l y . F or e x a m pl e , I a m na ke d but t he r e a r e m a ny
pe opl e a r ound m e l ooki ng a t m e . ” ( H J C , M a l e )
I n t e r m s of dy i ng w i t hout r e gr e t s , m a ny pa r t i c i pa nt s w ho c hos e t hi s c a r d s a i d t he y w e r e
s a t i s f i e d w i t h w ha t t he y ha d a c hi e ve d a nd di d not ha ve a ny r e gr e t s a t t hi s m om e nt . O ne s a i d t ha t
r e gr e t c oul d be i ne vi t a bl e , but i t i s f i ne a s l ong a s t he r e a r e no bi g r e gr e t s i n l i f e :
“ I r e a l l y hope I w i l l ha ve no r e gr e t s , but w ho know s w ha t w i l l ha ppe n ne x t . H ow e ve r , I
w i l l t r y m y be s t not t o ha ve bi g r e gr e t s w he n I di e . I hope I w i l l be s a t i s f i e d w i t h m y l i f e
w he ne ve r I t hi nk a bout i t . ” ( L P , M a l e )
R e ga r di ng t he s oc i a l t y p e of c a r e , t he t w o m os t f r e que nt l y pi c ke d c a r ds a s t he t op 1 w i s h
63
w e r e “ I don ’ t w a n t t o be a bur d e n t o m y f a m i l y ” ( n= 8 ) a nd “ I w a n t m y f a m i l y t o g e t a l one ” ( n= 6) ,
a nd t he s e t w o w e r e r e l e va nt t o e a c h ot he r a c c or di ng t o one pa r t i c i pa nt :
“ I f I w e r e i l l , I don’ t w a nt t o be a bur de n, ps y c hol ogi c a l l y a nd f i na nc i a l l y . I don’ t w a nt t o
dr a g t he m dow n be c a us e of m y s i t ua t i on. T hi s i s a l s o r e l a t e d t o t he ha r m ony of m y
f a m i l y . ” ( L Q Y , F e m a l e )
A not he r one s a i d:
“ I hope be f or e I di e , I w i l l not be c om e a bur de n t o m y f a m i l y , a nd I c a n s t i l l l i ve
i nde pe nde nt l y . N o, i t doe s not r e f e r t o t he f i na nc i a l bur de n. M y pe ns i on c a n c ove r i t . ”
( L P , M a l e )
R e ga r di ng t he f i na nc i a l a s pe c t of pl a nni ng , t he w i s h t ha t w a s m os t l y r a nke d a s t he t op 1
w a s “ I w a nt pl e a s a nt a nd qui e t s ur r oundi ngs ” ( n= 7) . A s pa r t i c i pa nt s s a i d:
“ T he pl e a s a nt a nd qui e t e nvi r onm e nt i s ve r y i m por t a nt t o m e be c a us e i t w i l l m a ke m e
ha ppy . ” ( B X L , F e m a l e )
“ I hope i t i s a na t ur a l e nvi r onm e nt , not l i ke a hos pi t a l . I t s houl d ha ve m e di c a l r e s our c e s
but t he e nvi r onm e nt s houl d be i de a l f or a gi ng. ” ( L P , M a l e )
D i f f i c u l t i e s i n A c h i e vi n g E O L Wi s h e s an d Wh at C ou l d B e D on e N ow
W he n a s ke d w he t he r t he r e w e r e c ha l l e nge s i n a c hi e vi ng t he s e w i s he s a nd w ha t c oul d be
done a t t hi s m om e nt t o he l p a c hi e ve t he m i n t he f ut ur e , m a ny s t a t e d t he y di d not f or e s e e
di f f i c ul t i e s : s om e ha d m a de t he a r r a nge m e nt or di s c us s e d w i t h t he l ove d one s ; s om e s a i d t he
l i vi ng a nd c a r e s t a nda r d ha d i m pr ove d i n C hi na a nd a l l w i s he s c oul d be f ul f i l l e d. A s pa r t i c i pa nt s
64
s a i d:
“ I ha ve a l r e a dy di s c us s e d w i t h m y da ught e r t ha t I don’ t w a nt a ny l i f e - s us t a i ni ng
t r e a t m e nt i f I ’ m a t t he E O L . I don’ t w a nt t o be pa i nf ul f or a ve r y l ong t i m e be f or e I di e …
I don’ t f or e s e e a ny di f f i c ul t i e s i n a c hi e vi ng t he s e w i s he s i n C hi na , e s pe c i a l l y s i nc e m a ny
w i s he s a r e up t o m e . ” ( H J C , M a l e )
“ I f I w e r e i l l , I w a nt t o m a ke m y ow n m e di c a l de c i s i ons . I be l i e ve t hi s c a n be a c hi e ve d
now i n C hi na , t ha t m y s e l f , m y f a m i l y a nd m y doc t or s di s c us s t he t r e a t m e nt pl a n
a l t og e t he r . ” ( W X Q , M a l e )
S om e pa r t i c i pa nt s poi nt e d out t he t r ut h- t e l l i ng i s s ue i n C hi ne s e c ul t ur e a nd s a i d t hi s de a t h
e duc a t i on pr ogr a m e nl i g ht e ne d t he m t o r e t hi nk a bout de a t h- r e l a t e d i s s ue s a nd s e e k oppor t uni t y
t o di s c us s t he i r w i s he s w i t h l ove d one s . A s t he y s a i d:
“ W he n m y f a t he r w a s i l l , I c hos e t o w i t hhol d t he t r ut h f r om hi m , but he f ound out a nd
w a s not ha ppy a bout i t . W he n I di s c us s e d i t w i t h y o u j us t now , I r e a l i z e d w ha t I di d w a s
w r ong, be c a us e i f I w e r e i n t he s a m e s i t ua t i on, I w oul d de f i ni t e l y w a nt t o know t he t r ut h
s o I c oul d di s c us s m y pr ognos i s a nd c a r e pl a n w i t h m y da ught e r a nd us e t he t i m e l e f t t o
r e a l i z e m y w i s he s . ” ( D G R , F e m a l e )
“ I r e a l l y hope I c a n be pa r t of t he m e di c a l de c i s i on- m a ki ng pr oc e s s . T he l a s t t i m e w he n I
w a s i l l , m y c hi l dr e n di d not t e l l m e t he t r ut h, but i f t he r e i s a n oppor t uni t y t o di s c us s i t i n
t he f ut ur e , I w i l l m a ke i t c l e a r t ha t I w a nt t o be pa r t of i t . ” ( D C Y , F e m a l e )
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C ha l l e nge s s t i l l e x i s t e d i n a c hi e vi ng c e r t a i n w i s he s . O ne pa r t i c i pa nt s a i d s he l a c ke d
oppor t uni t i e s t o di s c us s w i t h c hi l dr e n a bout he r w i s he s be c a us e of t he i r l oc a t i ons a nd bus y
s c he dul e s :
“ I don ’ t t hi nk t hi s i s up t o m e . I do not m e e t m y c hi l dr e n f r e que nt l y a nd t hus do not ha ve
m a ny oppor t uni t i e s t o di s c us s i t . ” ( G Q H , F e m a l e )
A l s o, one pa r t i c i pa nt s a i d t ha t c hi l dr e n ha ve t he r i ght t o r e f us e t o f ol l ow t he ol de r a dul t ’ s
w i s he s , e s pe c i a l l y w he n l ove d one s ha ve di f f e r e nt opi ni ons :
“ T hi s one ( ‘ I don’ t w a nt t o be ke pt a l i ve by m a c hi ne s ’ ) m a y be di f f i c ul t t o a c hi e ve
be c a us e t he r e c a n be f a m i l y c onf l i c t s r e ga r di ng w he t he r or not t o ke e p m e on t he
m a c hi ne . ” ( L P , M a l e )
T w o pa r t i c i pa nt s s a i d t he y ha d not di s c us s e d de a t h- r e l a t e d t opi c s w i t h t he i r c hi l dr e n
be c a us e , f or t he m , i t w a s s t i l l t oo e a r l y t o ha ve s uc h c onve r s a t i ons :
“ T o be hone s t , I ha ve not t houg ht a bout t hi s i s s ue be c a us e I a m not a t t ha t s t a g e t o
di s c us s i t . ” ( L Q Y , F e m a l e )
“ I ha ve not di s c us s e d t he s e w i s he s w i t h m y f a m i l y … J us t l e t i t be . M y c hi l dr e n m i g ht
ha ve pr e s s ur e i f I i ni t i a t e s uc h c onve r s a t i ons . ” ( W X Q , M a l e )
D i s c u s s i on
T hi s s t udy r e por t s t he us e of t he C hi ne s e G o W i s h c a r ds g a m e t o s ol i c i t c om m uni t y -
dw e l l i ng C hi ne s e ol de r a dul t s ’ E O L w i s he s a nd t he i r t houg ht s on t he s e l e c t i on. E xc e pt f or one
pa r t i c i pa nt t ha t ha d e y e i s s ue s , a l l pa r t i c i pa nt s c om pl e t e d t he g a m e ; no one ha d e m ot i ona l
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m om e nt s t hi nki ng a bout t he s e w i s he s i n a hy p ot he t i c a l w a y , i ndi c a t i ng t he g a m e i s f e a s i bl e t o
f a c i l i t a t e de a t h- r e l a t e d di s c us s i ons w i t h t he g e ne r a l ol de r C hi ne s e popul a t i ons .
B e c a us e t hi s w a s t he f i r s t t i m e t he g a m e w a s us e d i n t he g e ne r a l popul a t i on i n C hi na ,
f i ndi ng s c oul d onl y be c om pa r e d w i t h i t s pr e vi ous us e a m ong l a t e - s t a ge c a nc e r pa t i e nt s . A m ong
t hr e e e xi s t i ng s t udi e s , onl y one ( C he ng e t a l ., 2018) r e por t e d pa t i e nt s ’ s e l e c t i on of c a r ds , a nd
onl y t he t op t e n m os t f r e que nt l y pi c ke d c a r ds w e r e r e por t e d i n t ha t pa pe r . S t i l l , s om e
c om pa r i s ons c a n be m a de . O ur pa r t i c i pa nt s pi c ke d s om e s i m i l a r c a r ds t o C he ng e t a l . ( 2018) a s
t he m os t i m por t a nt w i s he s , i nc l udi ng not be i ng a bur de n t o f a m i l y , a hope f or g ood doc t or s a nd
nur s e s , f a m i l y g e t t i ng a l ong, dy i ng w i t h di g ni t y , g oi ng t o t r a ve l or g oi ng out s i de , a nd not
w a nt i ng t o be ke pt a l i ve by m a c hi ne s . B e c a us e of t ha t s t udy ’ s popul a t i on ( l a t e - s t a ge c a nc e r
pa t i e nt s ) , t he i r pa r t i c i pa nt s a l s o pi c ke d “ I don’ t w a nt t o s uf f e r ” a nd “ I w a nt t o know w ha t ’ s g oi ng
t o ha ppe n ne x t ” a s ve r y i m por t a nt w i s he s . M e a nw hi l e , our pa r t i c i pa nt s e m pha s i z e d be i ng ke pt
c l e a n a nd c om f or t a bl e , pl e a s a nt a nd qui e t s ur r oundi ngs , a nd t a l ki ng a bout w ha t t he y ha ve done
i n t he i r l i f e . T hi s m i g ht be be c a us e our pa r t i c i pa nt s w e r e hi g hl y e duc a t e d c om pa r e d t o t he
g e ne r a l ol de r a dul t popul a t i ons , a nd t hus t he y s oug ht hi g h qua l i t y - l i f e a nd c a r e . A ddi t i ona l l y ,
t he y w e r e pr oud of t he i r a c hi e ve m e nt s a nd w a nt e d t o t a l k a bout t he i r l i f e w i t h ot he r s . A s a m a t t e r
of f a c t , t he i nt e r ve nt i oni s t s pe nt s om e t i m e c onduc t i ng t he l i f e r e vi e w w i t h e a c h pa r t i c i pa nt
dur i ng our de a t h e duc a t i on pr og r a m . L i f e r e vi e w i nt e r ve nt i ons ha ve be e n s how n t o de c r e a s e
ol de r a dul t s ’ de pr e s s i on a nd a nxi e t y l e ve l s a nd i nc r e a s e t he i r l i f e s a t i s f a c t i on, s e l f - a c c e pt a nc e ,
bondi ng , a nd r e c onne c t i ng w i t h l ove d one s , a nd ha d be e n us e d i n bot h t he g e ne r a l ol de r a dul t
popul a t i ons a nd pe opl e a t E O L ( H a i ght & H a i ght , 2007; L i u e t a l ., 2021) . I t i s r e c om m e nde d t o
i nc l ude l i f e r e vi e w a s pa r t of t he de a t h e duc a t i on t o i nt e r e s t t he ol de r a dul t pa r t i c i pa nt a nd
t r a ns a c t t he t opi c f r om l i f e t o de a t h a nd dy i ng.
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W he n be i ng a s ke d a bout pos s i bl e c ha l l e nge s i n a c hi e vi ng t he s e l e c t e d w i s he s , m os t s t a t e d
t he r e s houl d be no di f f i c ul t i e s a s w he t he r or not t o a c hi e ve i t de pe nds on t he m s e l ve s , s how i ng
t hi s g r oup ’ s hi g h l e ve l of s e l f - e f f i c a c y i n ha ndl i ng t he i r c a r e a nd ot he r i s s ue s . R e s e a r c he r s
a r gue d t ha t s e l f - e f f i c a c y i s vi t a l f or ol de r a dul t s t o de c r e a s e de a t h a nx i e t y ( G r e e nbe r g e t a l .,
1986) . T hi s hi g h l e ve l s e l f - e f f i c a c y be a n e x pl a na t i on of our s a m pl e ’ s l ow de a t h a nx i e t y l e ve l
s how n i n C ha pt e r 3. S t i l l , t w o ol de r a dul t s r e por t e d di f f i c ul t i e s : one l a c ke d t he oppor t uni t y t o
di s c us s de a t h- r e l a t e d i s s ue s w i t h c hi l dr e n due t o t he i r l oc a t i on a nd bus y s c he dul e s , a nd t he ot he r
w a s w or r i e d a bout f a m i l y c onf l i c t s i n m e di c a l - de c i s i on m a ki ng . F or t he f i r s t pa r t i c i pa nt , i t m i g ht
s t i l l be t he de a t h t a boo t ha t pr e ve nt e d he r f r om s e e ki ng s uc h oppor t uni t i e s , a nd w e hope s om e
s ug ge s t i ons ( e .g., us e t he de a t h of a c e l e br i t y ) t he i nt e r ve nt i oni s t pr ovi de d he r w oul d he l p he r
be t t e r f i nd t he oppor t uni t y a nd i ni t i a t e t he di s c us s i on. F or t he ot he r pa r t i c i pa nt c onc e r ne d a bout
f a m i l y c onf l i c t s , t he i nt e r ve nt i oni s t a l s o e nc our a ge d hi m t o ha ve s uc h c onve r s a t i ons w i t h t he
w hol e f a m i l y s o t ha t e ve r y o ne unde r s t a nds hi s va l ue s a nd w i s he s a t E O L , t o i nc r e a s e t he c ha nc e s
t ha t hi s w i s he s w i l l be f ol l ow e d. A ddi t i ona l l y , t he t e a m w i l l c ont i nue t o a dvoc a t e f or t he l i vi ng
w i l l s t o be l e ga l l y a nd m e di c a l l y bi ndi ng i n C hi na , a nd l e t t i ng t he c onve r s a t i ons be pa r t of
r out i ne phy s i c a l c he c k- ups t o he l p bui l d a s oc i e t y m or e ope n t o s uc h di s c us s i ons .
B a s e d on our f i ndi ng s , pa r t i c i pa nt s f or one s a m e w i s h c a n ha ve di f f e r e nt m e a ni ngs a nd
e x pl a na t i ons . O ur s t udy , a m ong a l l ot he r G o W i s h c a r ds s t udi e s , w a s t he onl y one t ha t i nc l ude d
pa r t i c i pa nt s ’ e xpl a na t i ons t o t he s e l e c t i on, a nd t he va r i e t y i n t he i r e x pl a na t i ons s how e d t he
i m por t a nc e of g e t t i ng t o know one ’ s w i s he s de e pl y a nd pr ovi di ng pe r s on- c e nt e r e d c a r e
a c c or di ngl y . W e r e c om m e nd f ut ur e r e s e a r c he r s a nd pr a c t i t i one r s , w he n us i ng t he g a m e i n t he i r
s e t t i ng s , t o r e c or d not onl y a n i ndi vi dua l ’ s s e l e c t i on but a l s o t he r e a s ons be hi nd i t , a s w e l l a s
w he t he r t he a ge nc y a nd t he f a m i l y he l p t he i ndi vi dua l a c hi e ve a l l of t he w i s he s a nd f ur t he r t e s t
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t he us e a nd e f f e c t i ve ne s s of t he g a m e i n f a c i l i t a t i ng E O L di s c us s e s a nd i m pr ovi ng one ’ s qua l i t y
of c a r e a nd l i f e a t E O L .
R e ga r di ng t he C hi ne s e G o W i s h c a r ds t he m s e l ve s , a l t houg h not r e por t e d i n t he r e s ul t s
s e c t i on, s om e r e vi s i ons a r e ne e de d i f r e s e a r c he r s a nd pr a c t i t i one r s w a nt t o us e i t m or e e a s i l y i n
C hi na . F i r s t , t he c ur r e nt ve r s i on i s i n t r a di t i ona l C hi ne s e . A l t houg h a l l our pa r t i c i pa nt s e x pr e s s e d
f e w di f f i c ul t i e s r e a di ng t he t e x t ove r a l l , t he r e w e r e s t i l l s e ve r a l que s t i ons a bout t he m e a ni ng of
c e r t a i n t e r m s . A s i m pl i f i e d C hi ne s e ve r s i on w oul d be be t t e r . S e c ond, a c c or di ng t o t he C A C C C ’ s
g a m e de s c r i pt i on, w i s he s w e r e c a t e gor i z e d i nt o f our t y p e s , but i t s e e m s t ha t s om e w i s he s do not
r e a l l y m a t c h i t s ove r a l l t y p e . F or e x a m pl e , i n f i na nc i a l pl a nni ng , t he r e a r e w i s he s l i ke “ I w a nt m y
pe t s w i t h m e ” , a nd “ P l e a s e c onduc t onl y _ __ r e l i gi ous r i t ua l s a f t e r m y de a t h ” , w hi c h c a us e d s om e
c onf us i ons dur i ng t he di s c us s i on be t w e e n t he i nt e r ve nt i oni s t a nd pa r t i c i pa nt s . F ut ur e r e s e a r c he r s
m i g ht w a nt t o r e - c a t e gor i z e t he w i s he s or de ve l op a ne w ve r s i on ba s e d on E O L c a r e pr i or i t i e s
a m ong C hi ne s e popul a t i ons dr a w n f r om t he l i t e r a t ur e , t he i r r e s e a r c h, a nd pr a c t i c e e x pe r i e nc e s .
H ow e ve r , c ha l l e nge s e x i s t . C ur r e nt l y t he r e i s no c ons e ns us on t he di m e ns i ons of a g ood
de a t h. F or e x a m pl e , i n a l i t e r a t ur e r e vi e w of E ngl i s h- l a ngua ge qua nt i t a t i ve a nd qua l i t a t i ve s t udi e s
( M e i e r e t a l ., 2016) , 11 t he m e s of a g ood de a t h w e r e i de nt i f i e d: pr e f e r e nc e s f or a s pe c i f i c dy i ng
pr oc e s s , pa i n- f r e e s t a t us , r e l i gi os i t y / s pi r i t ua l i t y , e m ot i ona l w e l l - be i ng, l i f e c om pl e t i on, t r e a t m e nt
pr e f e r e nc e s , di g ni t y , f a m i l y , qua l i t y of l i f e , r e l a t i ons hi p w i t h H C P , a nd ot he r . S om e
m e a s ur e m e nt s of a g ood de a t h ha ve a l s o be e n de ve l ope d a nd t e s t e d, s uc h a s t he Q ua l i t y of D y i ng
a nd D e a t h Q ue s t i onna i r e ( Q O D D ) ( D ow ne y e t a l ., 2010) , t he G ood D e a t h S c a l e ( Y a o e t a l .,
2007) , a nd t he G ood D e a t h I n ve nt or y ( M i y a s hi t a e t a l ., 2008) , w i t h e a c h one ha vi ng t he i r c or e
t he m e s / c a t e gor i e s of a g ood de a t h. A m ong t he s e , Q O D D ha s be e n va l i da t e d by t he P I ’ s t e a m
a m ong a g r oup of c a r e gi ve r s of de c e a s e d ol de r a dul t s i n C hi na ( W a ng e t a l ., i n pr e s s ) , w i t h f i ve
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c a t e gor i e s i de nt i f i e d: s y m pt om s a nd pe r s ona l c a r e , pr e pa r a t i on f or de a t h, f a m i l y , t r e a t m e nt
pr e f e r e nc e s , a nd w hol e - pe r s on c onc e r ns . I f c a t e gor i z i ng t he t op 10 c a r ds ( 12 i n t ot a l , a s s om e
w e r e pi c ke d t he s a m e num be r of t i m e s ) s e l e c t e d a s i m por t a nt w i s he s i n t hi s s t udy i nt o t hos e f i ve
c a t e gor i e s , t he r e w i l l be t hr e e i n s y m pt om s a nd pe r s ona l c a r e : “ I w a nt t o be ke pt c l e a n a nd
c om f or t a bl e ” , “ I w a nt pl e a s a nt a nd qui e t s ur r oundi ngs ” , “ I w a nt t o be a bl e t o g o out s i de ” ; t w o i n
pr e pa r a t i on f or de a t h: “ I w a nt m y f i na nc e s t o be i n or de r ” , “ I l i ke t o t r a ve l t o ______ be f or e I
di e ” ; t w o i n f a m i l y : “ I don’ t w a nt t o be a bur de n t o m y f a m i l y ” , “ I w a nt m y f a m i l y t o g e t a l ong ” ;
t w o i n t r e a t m e nt pr e f e r e nc e s : “ I w a nt a doc t or I c a n t r us t a nd ni c e nur s e s ” , “ I f I ’ m g oi ng t o di e
a ny w a y , I don’ t w a nt t o be ke pt a l i ve by m a c hi ne s ” ; a nd t hr e e i n w hol e - pe r s on c onc e r ns : “ I w a nt
t o m a i nt a i n m y di g ni t y ” , “ I w a nt t o di e w i t hout r e gr e t ” , a nd “ I w a nt t o t a l k a bout w ha t I ha ve
done i n m y l i f e ” . T he s e s e e m t o m a t c h w e l l ; how e ve r , i t i s not e w or t hy t ha t t he c ur r e nt G o W i s h
c a r ds g a m e do not ha ve t he w e i ght f unc t i on f or e a c h c a r d, s o i t i s pos s i bl e t ha t s om e ot he r
i m por t a nt w i s he s w e r e not s e l e c t e d due t o t he l i m i t e d num be r of c a r ds t ha t c oul d be pi c ke d. F or
i ns t a nc e , ba s e d on t he P I ’ s obs e r va t i on, pa r t i c i pa nt s pi c ke d c a r ds i n t he ps y c h ol ogi c a l / s pi r i t ua l
t y p e ve r y qui c kl y , be c a us e m or e t ha n ha l f of t hos e c a r ds w e r e a bout s pe c i f i c w i s he s i n c e r t a i n
r e l i gi ons , but f e w of our pa r t i c i pa nt s ha ve a r e l i gi ous a f f i l i a t i on, s o t he y j us t s ki ppe d t hos e
c hoi c e s . M e a nw hi l e , t he y s pe nt a l ong e r t i m e s e l e c t i ng c a r ds i n t he s oc i a l t y p e of w i s he s , a s
C hi ne s e c ul t ur e i s f a m i l y - or i e nt e d a nd s om e s a i d t he y w a nt e d t o pi c k m or e t ha n t hr e e c a r ds .
A ddi ng t he w e i ght f unc t i on i s a not he r r e vi s i on ne e de d f or t he G o W i s h c a r ds g a m e t o be t t e r
r e f l e c t t he i r w i s he s .
T he l i m i t a t i ons of t he s t udy i nc l ude a s m a l l , hi g hl y e duc a t e d s a m pl e t o g a t he r t he i r G o
W i s h c a r ds s e l e c t i o n, a n d t he f i n di ngs m i ght not be t he s a m e f or t he ge ne r a l C hi ne s e ol de r a d ul t s .
A l s o, due t o t he t i m e r e s t r a i nt s , w e di d not i nc l ude f a m i l y m e m be r s t o pl a y t he c a r ds t og e t he r ,
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a l t houg h t he i nt e r ve nt i oni s t e nc our a ge d pa r t i c i pa nt s t o s ha r e w i t h l ove d one s t he i r w i s he s w he n
oppor t uni t i e s c om e . S t i l l , t hi s s t udy s how e d t ha t t he G o W i s h c a r ds g a m e c oul d be i de a l f or
f a c i l i t a t i ng E O L w i s h di s c us s i ons a m ong t he c om m uni t y r e s i de nt s i n a non- t hr e a t e ni ng w a y .
F ut ur e s t udi e s s houl d be c onduc t e d w i t h a l a r ge r g e ne r a l popul a t i on a nd i nc l ude a n ol de r a dul t ’ s
l ove d one s a s pa r t of t he g a m e t o i nc r e a s e m ut ua l unde r s t a ndi ng of one ’ s va l ue s a nd w i s he s
be t w e e n di f f e r e nt pa r t i e s , t a ki ng i nt o c ons i de r a t i on t he pr a c t i c a l s ug ge s t i ons de s c r i be d a bove .
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C h ap t e r 5: C on c l u s i on
T he pur pos e of c onduc t i ng t hi s s e r i e s of s t udi e s s t e m m e d f r om r e c ogni z i ng t he
i m por t a nc e of de a t h e duc a t i on a nd a dva nc e pl a nni ng di s c us s i ons a m ong t he g e ne r a l ol de r a dul t
popul a t i ons i n C hi ne s e s oc i e t i e s . M e di c a l i m pr ove m e nt s ha ve s uc c e s s f ul l y e x t e nde d hum a n
be i ngs ’ l onge v i t y , a nd i t i s now a n e x c e l l e nt t i m e t o di s c us s bot h t he qua nt i t y a nd qua l i t y a t E O L .
M a ki ng pl a ns i n a dva nc e he l p ol de r a dul t s t o f ul f i l l t he i r w i s he s a nd de c r e a s e r e gr e t s . S uppos e
one ha s not m a de e x pl i c i t t he i r E O L e x pe c t a t i ons a nd pr e f e r e nc e s . I n t ha t c a s e , t he de c i s i on-
m a ki ng pr oc e s s i s pl a c e d i n t he ha nds of f a m i l y m e m be r s , a nd t he r e m a y be f a m i l y c onf l i c t s
r e ga r di ng how t o c a r e f or t he i ndi vi dua l a t E O L , l e t a l one t he g r e a t e m ot i ona l bur de ns pl a c e d on
t he m . M os t i m por t a nt l y , f a m i l y ’ s de c i s i ons m a y not be c ons i s t e nt w i t h t hos e of pa t i e nt s , a s
i ndi c a t e d by our pa r t i c i pa nt s ’ r e a l e x pe r i e nc e s . H a vi ng de a t h- r e l a t e d c onve r s a t i ons w i t h ol de r
a dul t s a nd f a m i l i e s i s i m por t a nt but i s of t e n ne gl e c t e d i n t he r e a l pr a c t i c e s due t o a va r i e t y of
c ha l l e nge s .
I n t hi s pa pe r , t he a ut hor de s c r i be d t he de ve l opm e nt of t he “ M y L i f e , M y W i s he s ” de a t h
e duc a t i on pr ogr a m ba s e d on t he K now l e dge , A t t i t ude , a nd B e ha vi or m ode l , a nd r e por t e d
f i ndi ng s f r om S t a g e I A ( m odi f i c a t i on) a nd S t a g e I B ( pi l ot t e s t i ng ) of t he i nt e r ve nt i on
de ve l opm e nt , a s one of t he i ni t i a l s t e ps t o a dva nc e t he de a t h e duc a t i on c a m pa i gn i n m a i nl a nd
C hi na . S t a g e I A ’ s c ont r i but i ons i nc l ude i de nt i f y i ng s om e f a c t ua l a nd t he or e t i c a l f a c t or s t ha t
m i g ht i nf l ue nc e a C hi ne s e i ndi vi dua l ’ s de a t h a nx i e t y . F or e x a m pl e , hi g he r e duc a t i on l e ve l ,
r e l e va nt i l l ne s s e x pe r i e nc e s , r e l i gi os i t y , a nd s pi r i t ua l i t y c a n be r e l a t e d t o l ow e r de a t h a nxi e t y . I n
c om pa r i s on, t he g e ne r a l de a t h t a boo c ul t ur e a nd pe opl e ’ s l a c k of de a t h- r e l a t e d know l e dge c a n
c ont r i but e t o a hi g he r de a t h a nxi e t y l e ve l . O n t he m e z z o l e ve l , m a ny E O L c a r e a nd a dvoc a c y
a ge nc i e s l a c k r e s our c e s t o pr om ot e de a t h e duc a t i on i n a br oa de r s c ope due t o l i m i t e d f undi ng
72
s our c e s , w a r r a nt i ng t o e x pl or e m ul t i pl e a ppr oa c he s t o obt a i n f undi ng. O n t he m a c r o l e ve l ,
a l t houg h A D f or m s do not ha ve l e ga l i m pl i c a t i ons i n C hi na , i t c a n s t i l l be pr om ot e d a nd us e d a s
t ool s t o f a c i l i t a t e di s c us s i ons a m ong a n i ndi vi dua l , f a m i l y , a nd H C P s . T he y a l s o e x pr e s s e d t he i r
pos i t i vi t y i n c ont i nui ng t he de a t h e duc a t i on c a m pa i gn i n C hi na a s t he s oc i e t y be c om e s
i nc r e a s i ng l y ope n- m i nde d a nd E O L c a r e ha s be e n g r a dua l l y de ve l ope d t o a l l ow pe opl e t o c hoos e
di f f e r e nt c a r e a t E O L .
R e ga r di ng S t a g e I B ’ s c ont r i but i ons , our pi l ot qua s i - e x pe r i m e nt a l s t udy s how e d t ha t our
de a t h e duc a t i on pr ogr a m c oul d i nc r e a s e pa r t i c i pa nt s ’ know l e dge on a dva nc e c a r e pl a nni ng a nd
f a c i l i t a t e a m or e pos i t i ve a t t i t ude t ow a r d di s c us s i ng E O L w i s he s w i t h ot he r s i n a dva nc e .
B e ha vi or - w i s e , a l t houg h not s i g ni f i c a nt a t p= .05 l e ve l , t he r e w a s a t r e nd t ha t i nt e r ve nt i on g r oup
pa r t i c i pa nt s w e r e m or e l i ke l y t o ha ve de a t h- r e l a t e d di s c us s i ons w i t h l ove d one s , c om pa r e d t o t he
c ont r ol g r oup pa r t i c i pa nt s . T he s e f i ndi ng s i ndi c a t e t ha t de a t h e duc a t i on i s pr om i s i ng i n
i nc r e a s i ng ol de r C hi ne s e c om m uni t y r e s i de nt s ’ know l e dge , f a c i l i t a t i ng f a vor a bl e a t t i t ude s a nd
be ha vi or t ow a r d a dva nc e pl a nni ng .
I n t e r m s of t he pr ogr a m c ont e nt a nd de l i ve r y , c ons i s t e nt w i t h t he or i e s on de a t h a nx i e t y
a nd t he K A B m ode l , a va r i e t y of a c t i vi t i e s w e r e he l d t o e nha nc e know l e dge a c qui s i t i on, be l i e f
g e ne r a t i on, a nd be ha vi or f or m a t i on. W e s pe c i f i c a l l y c hos e t o i nc l ude t he l i f e r e vi e w , f oc us i ng on
e x pe r i e nc e s of a pa r t i c i pa nt ’ s i l l ne s s or t he i r l ove d one s ’ de a t h a nd dy i ng, t o he l p i ni t i a t e t he
c onve r s a t i on, r e a ppr a i s e t he i r l i ve s , a nd br i ng a bout a pa r t i c i pa nt ’ s s t r e ngt h, r e s i l i e nc e , a nd
pe r s ona l g r ow t h f r om s uc h a dve r s i t i e s t o he l p t he m a c hi e ve e go i nt e g r i t y a nd de c r e a s e de a t h
a nx i e t y . A ddi t i ona l l y , t he C hi ne s e G o W i s h c a r ds g a m e w a s s how n t o be a n i nt e r a c t i ve , l e s s
t hr e a t e ni n g, a n d i ne x pe n s i ve a pp r o a c h f o r de a t h- r e l a t e d di s c us s i on s ha p pe ni n g i n t he c o m m un i t y ,
be t t e r a c c om pa ni e d w i t h a c up of t e a . I t a l s o s how e d t ha t C hi ne s e ol de r a dul t s , a t l e a s t s om e , a r e
73
w i l l i ng t o c ha l l e nge t he t r ut h- w i t hhol di ng i s s ue a nd he a r t he t r ut h of t he i r i l l ne s s e s i n or de r t o
m a ke pl a ns i n a dva nc e . T he g a m e i s e a s y t o pl a y t o e x pl or e C hi ne s e ol de r a dul t s ’ va l ue s a nd
be l i e f s unde r pi nni ng t he i r c a r e pr e f e r e nc e s . T he va r i e t y i n t he pa r t i c i pa nt s ’ s e l e c t i on of t he m os t
i m por t a nt w i s he s a nd t he i r f oc us on f a m i l y - r e l a t e d w i s he s hi g hl i ght e d t he i m por t a nc e of pe r s on-
c e nt e r e d, f a m i l y - or i e nt e d c a r e a nd pl a nni ng a m ong C hi ne s e popul a t i ons .
A g r e a t num be r of i m pl i c a t i ons ha ve be e n di s c us s e d i n pr e vi ous c ha pt e r s , a nd be l ow a r e
s om e a ddi t i ona l i m pl i c a t i ons f or r e s e a r c h, pr a c t i c e , a nd pol i c y dr a w n f r om t hi s s e r i e s of s t udi e s .
R e s e ar c h
T he or y - w i s e , c ont i nui ng t o e x a m i ne t he t he or e t i c a l a nd f a c t ua l f a c t or s t ha t i nf l ue nc e
C hi ne s e ol de r a dul t s ’ de a t h a nx i e t y l e ve l s i s ne e de d. P a r t i c ul a r l y , r e l a t i ons hi ps be t w e e n t he g ood
de a t h c onc e r ns a nd s om e de m ogr a phi c a nd ps y c h os oc i a l va r i a bl e s c a n be s t udi e d t o s he d l i g ht on
t he di r e c t i on of i m pr ovi ng t he qua l i t y of c a r e a t E O L . T hi s i s a l s o pa r t of t he e f f or t s i n
unde r s t a ndi ng, de f i ni ng, a nd c a t e gor i z i ng a g ood de a t h a m ong t hi s popul a t i on. T he i m m e di a t e
ne x t s t e p c a n be a l i t e r a t ur e r e vi e w of bot h qua l i t a t i ve a nd qua nt i t a t i ve s t udi e s on f a c t or s r e l a t e d
t o g ood de a t h a m ong C hi ne s e popul a t i ons w or l dw i de . A l t houg h s uc h l i t e r a t ur e r e vi e w e x i s t s f or
t he g e ne r a l popul a t i on ( e .g., M e i e r e t a l ., 2016) , no C hi ne s e - l a ngua ge s t udy w a s i nc l ude d a nd
t hus , vi t a l i nf or m a t i on c oul d ha ve be e n m i s s e d due t o t he l a ngua ge c a pa c i t y .
R e ga r di ng t he s t udy pa r t i c i pa nt s , our pi l ot s t udy onl y i nc l ude d ol de r a dul t s due t o t i m e
a nd f undi ng r e s t r a i nt s . T he f ol l ow i ng e f f i c a c y s t udy c a n i nc l ude f a m i l y m e m be r s w ho a t t e nd t he
e duc a t i on pr ogr a m t og e t he r w i t h t he ol de r a dul t a nd c om pa r e out c om e s be t w e e n t hi s g r oup a nd
one i n w hi c h onl y ol de r a dul t s a t t e nd. F a m i l y pr e s e nc e c a n m a ke t he pr oc e s s bot h dy n a m i c a nd
c ha l l e ngi ng, e s pe c i a l l y r e ga r di ng f a m i l y i nc ongr ue nc e . H ow e ve r , t hi s pr ogr a m i s one s uc h
oppor t uni t y f or bot h pa r t i e s t o e x pr e s s t he i r opi ni ons a nd l e t e a c h ot he r ’ s voi c e s be he a r d, a nd
74
s houl d be g i ve n a n a t t e m pt . A ddi t i ona l r e s e a r c h w oul d be of g r e a t va l ue t hr ough e x a m i ni ng t he
e f f e c t s of t he M y L i f e , M y W i s he s pr ogr a m i n di f f e r e nt ol de r a dul t g r oups , s uc h a s ol de r a dul t s
l i vi ng a l one , l os i ng t he onl y c hi l d, a nd phy s i c a l l y i m pa i r e d. P i l ot t e s t i ng s houl d be c onduc t e d i n
a dva nc e t o i de nt i f y c ha nge s ne e de d f or t he pr ogr a m t o c a t e r t o t he ne e ds a nd s i t ua t i ons of
di f f e r e nt g r oups .
O n a n e ve n l a r ge r s c a l e r , f or t he e f f e c t i ve ne s s s t udy , t he t r a i n- t he - t r a i ne r m ode l m i g ht be
us e d. A s s oc i a l w or k pr of e s s i on i s qui c kl y de ve l opi ng i n C hi na , s oc i a l w or ke r s w or ki ng i n
c om m uni t i e s a nd i ns t i t ut i ons c a n be t r a i ne d t o de l i ve r t he pr ogr a m . F or t he r e s e a r c h pur pos e , i t i s
vi t a l t o e ns ur e i m pl e m e nt a t i on f i de l i t y . T hi s c a n be a c hi e ve d by s e l e c t i ng t hos e w ho s how
c om m i t m e nt t o t he pr ogr a m , us i ng t he pr e de ve l ope d pr og r a m g ui de , a nd t he s e s oc i a l w or ke r s
be i ng s upe r vi s e d by t hos e w ho a l r e a dy ha ve s uc h e x pe r i e nc e , know l e dge , a nd s ki l l s f or t he i r
pr of e s s i ona l de ve l opm e nt .
I t i s a l s o i m por t a nt t o e x a m i ne t he e f f e c t s of de a t h- r e l a t e d di s c us s i ons ove r t i m e . I f
r e s our c e s a l l ow , l ong i t udi na l s t udi e s c a n be c onduc t e d t o r e c or d c ha nge s i n i ndi vi dua l s ’ E O L
pr e pa r a t i on t houg ht s a nd f i na l l y , t o e x a m i ne i f t he i r E O L c a r e m a t c he s w i t h t he i r pr e - de s c r i be d
c hoi c e s a nd pr e f e r e nc e s .
P r ac t i c e
O ur s t udy s how e d t ha t us i ng i nt e r a c t i ve a c t i vi t i e s s uc h a s g a m e s c a n be a n e nt e r t a i ni ng
a nd l e s s t hr e a t e ni ng w a y t o de l i ve r de a t h e duc a t i on a m ong ol de r C hi ne s e popul a t i ons . R e ga r di ng
t he G o W i s h c a r ds g a m e s pe c i f i c a l l y , i t s t i l l ha s r oom f or i m pr ove m e nt s w hi c h ha s be e n
di s c us s e d i n C ha pt e r 4, s uc h a s r e c a t e gor i z i ng t he c a r ds a nd a ddi ng t he w e i ght f unc t i on.
O ne i nt e r vi e w e e i n S t a g e I A s ug ge s t e d t ha t de a t h e duc a t i on c a n be i nc l ude d i n a s e r i e s of
e duc a t i on s e s s i ons pr ovi de d t o ol de r a dul t s a nd f a m i l y m e m be r s . F or e x a m pl e , c ons i s t e nt w i t h
75
t he K A B m ode l , s om e know l e dge c a n be t a ught i n e a r l i e r s e s s i ons , s uc h a s c ha nge s w i t h a gi ng
a nd di s e a s e s a nd di f f e r e nt l i f e - s us t a i ni ng t r e a t m e nt s w i t h be ne f i t s a nd a dve r s e out c om e s .
A l t houg h de a t h t a boo s t i l l e x i s t s , i t i s dog m a t i c t o pr e s um e t ha t ol de r a dul t s unc e r t a i n a bout E O L
c a r e c hoi c e s do not w a nt t o di s c us s r e l a t e d i s s ue s . P os s i bl y t he y ne e d a n e x pl a na t i on of t he c a r e
a nd s uppor t r e s our c e s or t i m e t o t hi nk a bout i t or di s c us s i t w i t h t he i r f a m i l y a f t e r a t t e ndi ng our
pr ogr a m . I t a l w a y s t a ke s t i m e t o unde r s t a nd, di g e s t , a nd de c i de w ha t ha s be e n l e a r ne d t hr oughout
t he pr oc e s s .
O ur s t udy s how e d t he i m por t a nc e of c ol l a bor a t i ng w i t h c om m uni t y - ba s e d or g a ni z a t i ons
t o r e a c h out t o r e s i de nt s f or pa r t i c i pa t i on. R e ga r di ng i ns t i t ut i on r e s i de nt s , ba s e d on t he l i t e r a t ur e
( e .g., C ha n & P a ng , 2010) , t he l oc a t i on ’ s a dva nt a ge w oul d be t he t r us t i ng r e l a t i ons hi p be t w e e n
H C P s a nd r e s i de nt s a nd t he r e s i de nt s ’ l ong - t e r m s t a y . A ddi t i ona l l y , w e s ug ge s t t ha t a dva nc e
pl a nni ng be a r out i ne pr a c t i c e i n i ns t i t ut i ons t o be c onduc t e d r e gul a r l y t o r e c or d t he r e s i de nt ’ s
c ha nge s i n t houg ht s a nd a t t i t ude s a nd br e a k t he de a t h t a boo w i t hi n t he i ns t i t ut i on.
F i na l l y , e ve r y pa r t i c i pa nt i s di f f e r e nt w i t h uni que pe r s onhood, i nne r t houg ht s , a nd
f e e l i ng s . A n i nt e r ve nt i oni s t s houl d a c t w i t h hum i l i t y a nd bui l d a t he r a pe ut i c r e l a t i ons hi p w he n
di s c us s i ng e m ot i ona l l y s e ns i t i ve t opi c s l i ke de a t h, but t he ove r a r c hi ng t he m e s a r e t he s a m e f or
a l l pa r t i c i pa nt s : t o t hr e a d t hr oug h pa s t e x pe r i e nc e s , pr e s e nt c onc e r ns , a nd f ut ur e pl a nni ng .
P ol i c y
A l t houg h A D l e gi s l a t i on i n C hi na s t i l l ha s a l ong w a y t o g o, i t s houl d be pos s i bl e t o
e x pe di t e t he de ve l opm e nt of t he E O L c a r e uni t s a nd a ge nc i e s , a c r uc i a l pa r t of t he de a t h
e duc a t i on c a m pa i gn. C ur r e nt l y , m os t of s uc h s e r vi c e s a r e pr ovi de d t o dy i ng pa t i e nt s , e s pe c i a l l y
l a t e - s t a ge c a nc e r pa t i e nt s i n hos pi t a l s ; i n- hom e hos pi c e s e r vi c e s a r e l a c ki ng ( L i u & Y ua n, 2016) .
I t i s not i de a l i f pe opl e a dvoc a t e f or dy i ng w i t h di g ni t y but i n r e a l i t y r e s our c e s a r e not a de qua t e
76
f or i ndi vi dua l s w ho w a nt t o us e s uc h hi g h- qua l i t y c a r e a nd s uppor t .
O ve r a l l , t hi s s t udy i s one of t he f i r s t s t e ps t o de l i ve r de a t h e duc a t i on a nd ha ve de a t h-
r e l a t e d di s c us s i ons t o c om m uni t y - dw e l l i ng C hi ne s e ol de r a dul t s , a popul a t i on t ha t ne e ds s uc h
c onve r s a t i on but l a c ks oppor t uni t i e s . W e r e c om m e nd t ha t f ut ur e r e s e a r c he r s a nd pr a c t i t i one r s
t a ke i nt o c ons i de r a t i on t he pr ogr a m ’ s r e s e a r c h a nd pr a c t i c e i m pl i c a t i ons t o pr om ot e t he de a t h
e duc a t i on m ove m e nt t o a w i de r c ont e x t i n C hi na ’ s s oc i e t y .
77
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w e r % 20c hi l dr e n.& t e x t = A s % 20a % 20r e s ul t % 2C % 20m a ny % 2 0onl y , de pe nde nt % 20on% 20
t he m % 20f or % 20c a r e .
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27( 23 –24) , 4400–4410. ht t ps : / / doi .or g / 10.1 1 1 1 / j oc n.14595
89
A P P E N D I C E S
A p p e n d i x I : S t age I A I n t e r vi e w G u i d e
1. P l e a s e de s c r i be y o ur c ur r e nt j ob dut i e s .
2. I ’ d l i ke t o he a r y o ur e xpe r i e nc e s w i t h e nd- of - l i f e ( E O L ) c a r e .
a . H a ve y o u c a r e d f or E O L pa t i e nt s ? W ha t s pe c i f i c a l l y w a s y o ur w or k?
i . H a ve y o u di s c us s e d w i t h a ny of y o ur pa t i e nt s a bout t he i r E O L w i s he s ?
c oul d be phy s i c a l , ps y c hol ogi c a l , f i na nc i a l , s oc i a l ; i nc l udi ng but not
l i m i t i ng t o g ood de a t h, E O L c a r e pr e f e r e nc e s , w i s he s f or f a m i l i e s , a s s e t
a r r a nge m e nt , f une r a l a r r a nge m e nt
1. I f y e s , how w a s y o ur e x pe r i e nc e ? ( e .g., di d i t g o w e l l , w ha t w e r e
t he c ha l l e nge s )
b. H a ve y o u e ve r di s c us s e d w i t h a ny of y o ur f a m i l y m e m be r s or f r i e nds r e ga r di ng
t he i r E O L w i s he s ?
i . I f y e s , w ha t di d y o u t a l k a bout ? H ow w a s t he e x pe r i e nc e ?
c . H a ve y o u e ve r t houg ht a bout y o ur ow n E O L w i s he s ?
i . I f Y E S , w oul d y o u l i ke t o s ha r e y o ur w i s he s ? H a ve y o u s ha r e d t he s e w i t h
ot he r pe opl e ? W hy or w hy not ?
i i . I f N O , w ha t a r e t he r e a s ons f or not t hi nki ng a bout t he s e i s s ue s ?
d. H a ve y o u e ve r he a r d of a dva nc e c a r e pl a nni ng [ 预立医疗自主计划 ] or a dva nc e
di r e c t i ve s ? [ 生前预嘱, e .g., l i vi ng w i l l , he a l t h c a r e pr ox y ]
i . I f y e s , w ha t i s y o ur unde r s t a ndi ng of i t ?
( A dv anc e c ar e pl anni ng i s m ak i ng de c i s i ons about t he he al t hc ar e y ou w oul d w ant t o r e c e i v e i f
y ou happe n t o be c om e unabl e t o s pe ak f or y our s e l f ;
A n adv anc e di r e c t i v e f or m i s a l e gal doc um e nt i n m any ot he r c ount r i e s i n w hi c h a pe r s on
s pe c i f i e s w hat ac t i ons s houl d be t ak e n f or t he i r he al t h i f t he y ar e no l onge r abl e t o m ak e
de c i s i ons f or t he m s e l v e s be c aus e of i l l ne s s or i nc apac i t y ;
C ur r e nt l y i n C hi na, adv anc e di r e c t i v e f or m s ar e not l e gal i z e d. H ow e v e r , m any N G O s s uc h as
B e i j i ng L i v i ng W i l l P r o m ot i on A s s oc i at i ons ar e pr o m ot i ng adv anc e c ar e pl anni ng di s c us s i on and
doc um e nt at i on of i t s ow n adv anc e di r e c t i v e f or m , i n or d e r t o s uppor t bot h s e l f - de t e r m i nat i on and
f am i l y c om m uni c at i on: ht t p: / / w w w . l w pa .or g .c n/ )
3. I ’ d l i ke t o he a r y o ur t r a i ni ng ba c kgr ound a nd e x pe r i e nc e s w i t h de a t h e duc a t i on:
a . H a ve y o u e ve r r e c e i ve d a ny de a t h e duc a t i on? T hi s c oul d i nc l ude l e a r ni ng a bout
di f f e r e nt e nd- of - l i f e c a r e c hoi c e s s uc h a s l i f e s us t a i ni ng t r e a t m e nt , hos pi c e ,
pa l l i a t i ve c a r e ; how t o c a r e f or pe opl e a t t he e nd- of - l i f e ; how t o c onduc t l i f e
r e vi e w w i t h pe opl e a t t he e nd- of - l i f e ; c om m uni c a t i on s t r a t e gi e s w i t h pa t i e nt s a nd
f a m i l y a bout e nd- of - l i f e i s s ue s , e t c .
b. H a ve y o u e ve r de l i ve r e d de a t h e duc a t i on t o a ny o ne ? s uc h a s y o ur pa t i e nt s ,
s t ude nt s , pe opl e a r ound y o u, or t he g e ne r a l publ i c
i . I f y e s , w ho di d y o u de l i ve r t he e duc a t i on t o?
i i . W ha t s pe c i f i c a l l y di d y o u t a l k a bout ?
i i i . H ow w a s t he e x pe r i e nc e ( e .g., di d i t g o w e l l , w ha t w e r e t he c ha l l e nge s ) ?
90
4. H e r e i s m y pr opos e d c ont e nt f or a 2- da y , 4- hour de a t h e duc a t i on pr ogr a m f or ol de r a dul t s
i n C hi na . [ I n t e r vi e w e r s h ow an d e xp l ai n t h e t ab l e an d l e t t h e i n t e r vi e w e e r e vi e w al l
t op i c s b e f or e as k i n g t h e f ol l ow i n g q u e s t i on s ]
a . A r e t opi c s r e l e va nt t o de a t h e duc a t i on?
i . I f not , w hy not r e l e va nt ?
i i . W ha t t opi c s c a n be a dde d?
b. A r e t opi c s c ul t ur a l l y a ppr opr i a t e ?
i . I f not , w hy not c ul t ur a l l y a ppr opr i a t e ?
i i . W ha t t opi c s c a n be r e vi s e d or a dde d t o i nc r e a s e t he c ul t ur a l
a ppr opr i a t e ne s s ?
c . H ow t o m a ke t he c ont e nt a nd t he de l i ve r y m or e e ng a gi ng?
d. W ha t do y o u t hi nk of t he or de r of t he t opi c s ?
i . H ow c a n I be t t e r r e - a r r a nge t he or de r ?
e . C ons i de r i ng t he t i m e r e s t r a i nt s , w ha t a r e t he m os t i m por t a nt t opi c s t o c ove r i n a
br i e f , 4- hour e duc a t i ona l i nt e r ve nt i on?
f . D o y o u t hi nk s uc h e duc a t i on c ont e nt c a n be de l i ve r e d t hr ough ot he r w a y s t ha n
f a c e - t o- f a c e i nt e r vi e w / di s c us s i ons ?
5. W ha t do y o u t hi nk a r e t he ba r r i e r s t o de a t h e duc a t i on f or C hi ne s e ol de r a dul t s a nd
g e ne r a l publ i c ?
6. W ha t do y o u t hi nk a r e t he f a c i l i t a t or s of de a t h e duc a t i on f or C hi ne s e ol de r a dul t s a nd
g e ne r a l publ i c ?
91
A p p e n d i x I I : S t age I A P r ogr am O u t l i n e
C o n t e n t
D a y 1
( I n d i v i d u a l )
“ T h e T r a i n o f L i f e ” ( v i d e o , d i s c u s s i o n )
L i f e r e v i e w , f o c u s i n g o n i l l n e s s o r d e a t h e x p e r i e n c e s o f p a r t i c i p a n t s
o r t h e i r l o v e d o n e s ( d i s c u s s i o n )
W h y s h o u l d p e o p l e m a k e p l a n s f o r E O L c a r e ? ( d i s c u s s i o n )
1 0 - m i n b r e a k
A c a s e s c e n a r i o t o e x p l a i n d i f f e r e n t o p t i o n s a t E O L ( l e c t u r e , c a s e
s t u d y )
G o W i s h c a r d s ( g a m e )
Q & A
D a y 2 ( G r o u p )
G o i n g t h r o u g h t h e F i v e W i s h e s f o r m ( l e c t u r e , d i s c u s s i o n )
1 0 - m i n b r e a k
H o w t o i n i t i a t e a n d h a v e d e a t h - r e l a t e d d i s c u s s i o n s w i t h f a m i l y
m e m b e r s a n d H C P s ? ( v i d e o , d i s c u s s i o n )
I n t r o d u c t i o n o f t h e B e i j i n g L i v i n g W i l l A s s o c i a t i o n a n d C h i n a W i l l
R e g i s t r a t i o n C e n t e r
Q & A
92
A p p e n d i x I I I : S t age I B P ar t i c i p an t S c r e e n i n g F or m
R e c r u i t e r : ____________ L oc at i on : _____________ D at e / T i m e : ________________
O l d e r A d u l t N am e : __________________ A ge : __________ G e n d e r : _____________
E d u c at i on ( c i r c l e ) : 1. H i g h s c hool a nd be l ow 2. A s s oc i a t e de gr e e 3. B a c he l or ’ s de gr e e 4.
M a s t e r ’ s de gr e e a nd a bove
1. I n c l u s i on C r i t e r i a
Y e s N o
1.1 A g e 60 a nd a bove
o o
1.2 C a n r e a d a nd s pe a k M a nda r i n C hi ne s e
o o
1.3 H a ve s om e one w i t h w hom c a n di s c us s pr i va t e i s s ue s ( e .g.,
f i na nc e , i l l ne s s )
o o
1.4 H a ve t r a ns por t a t i on t o c om e t o t he r e s e a r c h s i t e o o
C h e c k f or E l i gi b i l i t y:
£ I f a ny r e s pons e a ns w e r i s a “ N o ” à s ki p t o I n e l i gi bl e C l os i n g S c r i pt .
£ O t he r w i s e , c ont i nue t o E x c l us i on C r i t e r i a .
2. E xc l u s i on C r i t e r i a
A . S h or t P or t ab l e M e n t al S t at u s Q u e s t i on n ai r e ( S P M S Q )
C or r e c t E r r or or N o A ns w e r
2.A 1 W ha t i s t he da t e t oda y ? o o
2.A 2 W ha t da y of t he w e e k i s i t ? o o
2.A 3 W he r e a r e y o u r i ght now ? o o
2.A 4 W ha t i s y o ur t e l e phone num be r ? o o
2.A 5 H ow ol d a r e y o u? o o
2.A 6 W he n w e r e y o u bor n? o o
2.A 7 W ho i s t he c ur r e nt pr e s i de nt of C hi na ? o o
2.A 8 W ho w a s t he pr e s i de nt j us t be f or e hi m ? o o
2.A 9 W ha t ’ s y o ur m ot he r ’ s m a i de n na m e ? o o
2.A 10 S ubt r a c t 3 f r om 20 a nd ke e p s ubt r a c t i ng
e a c h ne w num be r unt i l y o u g e t a l l t he w a y dow n.
o o
T ot al n u m b e r of e r r or s : ___________
93
C h e c k f or S t u d y E l i gi b i l i t y:
£ S P M S Q 4 or m or e e r r or s à s ki p t o I n e l i gi bl e C l os i n g S c r i pt .
£ O t he r w i s e , c ont i nue t o S e c t i on B .
B . P e r s on al H e al t h Q u e s t i on n ai r e D e p r e s s i on S c al e ( P H Q - 8)
O ve r t he l as t t w o ( 2) w e e k s , how of t e n ha ve y o u be e n bot he r e d by a ny of t he f ol l ow i ng
pr obl e m s ? ( c i r c l e on e num be r on e ac h l i ne )
0= N ot a t a l l 1= S e ve r a l da y s 2= M or e t ha n ha l f of da y s 3= N e a r l y e ve r y d a y
H ow of t e n dur i ng t he pa s t 2 w e e ks w e r e y o u bot he r e d by… S c or e
2.B 1 L i t t l e i n t e r e s t or p l e as u r e i n d oi n g t h i n gs 0 1 2 3
2.B 2 F e e l i n g d ow n , d e p r e s s e d , or h op e l e s s 0 1 2 3
2.B 3 T r ou b l e f al l i n g or s t ayi n g as l e e p , or s l e e p i n g t oo m u c h 0 1 2 3
2.B 4 F e e l i n g t i r e d or h avi n g l i t t l e e n e r gy 0 1 2 3
2.B 5 P oor ap p e t i t e or ove r e at i n g 0 1 2 3
2.B 6 F e e l i n g b ad ab ou t you r s e l f , or t h at you ar e a f ai l u r e , or h ave
l e t you r s e l f or you r f am i l y d ow n
0 1 2 3
2.B 7 T r ou b l e c on c e n t r at i n g on t h i n gs , s u c h as r e ad i n g t h e
n e w s p ap e r or w at c h i n g t e l e vi s i on
0 1 2 3
2.B 8 M ovi n g or s p e ak i n g s o s l ow l y t h at ot h e r p e op l e c ou l d h ave
n ot i c e d . O r t h e op p os i t e - b e i n g s o f i d ge t y or r e s t l e s s t h at
you h ave b e e n m ovi n g ar ou n d a l ot m or e t h an u s u al
0 1 2 3
T o t al s c or e :___________
C h e c k f or S t u d y E l i gi b i l i t y:
£ P H Q - 8 s c or e s 10 an d ab ove à s ki p t o I n e l i gi bl e C l os i n g S c r i pt
£ Q u al i f i e s t o s t u dy . U s e E l i gi bl e C l os i n g S c r i pt
C l os i n g S c r i p t :
I n e l i gi b l e f or S t u d y
O k, t hos e a r e a l l t he que s t i ons t ha t I ne e d t o a s k y o u. I r e a l l y w a nt t o t ha nk y o u f or t a ki ng t he
t i m e t o s pe a k w i t h m e a nd t o a ns w e r t he s e que s t i ons !
94
E l i gi b l e f or S t u d y
O k, t hos e a r e a l l t he que s t i ons t ha t I ne e d t o a s k y o u. B a s e d on w ha t y o u ha ve t ol d m e , y o u
m a y be i nt e r e s t e d i n j oi ni ng our s t udy . I w oul d l i ke t o t e l l y o u a l i t t l e a bout w ha t w e a r e
doi ng s o y o u c a n de c i de w he t he r y o u ’ d l i ke t o pa r t i c i pa t e . H e r e i s w r i t t e n i nf or m a t i on t ha t
de s c r i be s e x a c t l y w ha t i s i nvol ve d. I w i l l g o t hr ough i t w i t h y o u s e c t i on by s e c t i on a nd I w i l l
a ns w e r a ny que s t i ons y o u ha ve . ( G o t hr oug h I n f or m e d C ons e nt a nd s i g n)
95
A p p e n d i x I V : T 0 A s s e s s m e n t Q u e s t i on s
O l d e r A d u l t N am e : __________________ O l d e r A d u l t I D : __________________
I n t e r vi e w e r N am e : __________________ D at e / T i m e : ________________
T h an k you f or you r w i l l i n gn e s s t o p ar t i c i p at e i n t h i s s u r ve y . I w i l l as k s om e q u e s t i on s ab ou t
you r p h ys i c al an d m e n t al h e al t h . I f you d o n ot w an t t o an s w e r a q u e s t i on , p l e as e l e t m e
k n ow an d w e w i l l s k i p t o t h e n e xt q u e s t i on . Y o u r an s w e r s w i l l b e k e p t s t r i c t l y c on f i d e n t i al .
T h i s q u e s t i on n ai r e t ak e s ab ou t 30- 40 m i n u t e s t o c om p l e t e . L e t ' s s t ar t w i t h s om e
b ac k gr ou n d i n f or m at i on .
( I n s t r u c t i on s : F i l l i n or c i r c l e t h e c or r e c t an s w e r . P l e as e c i r c l e t h e n u m be r s , n ot be t w e e n t h e
n u m be r s . I f n e c e s s ar y , pl e as e t ake n ot e s i n t h e bl an k s pac e , s u c h as " don ’ t w an t t o an s w e r " ,
" don ' t kn ow " , " n ot appl i c abl e " , e t c .)
P ar t A . B ac k gr ou n d I n f or m at i on
A 1. Y o u r age : ___________
A 2. G e n d e r : ( D o n ot as k, j u s t obs e r v e )
1. M a l e
2. F e m a l e
A 3. Wh at i s you r e d u c at i on l e ve l ?
1. H i g h s c hool a nd be l ow
2. A s s oc i a t e de gr e e
3. B a c he l or ’ s de gr e e
4. M a s t e r ’ s de gr e e a nd a bove
A 4. Wh at i s you r m ar i t al s t at u s ?
1. S i ng l e
2. M a r r i e d
3. D i vor c e d
4. W i dow e d
A 5. Wh at i s you r r e l i gi ou s af f i l i at i on ?
1. N one
2. I s l a m
3. B uddhi s m
4. C hr i s t i a ni t y
5. O t he r , pl e a s e s pe c i f y : ___________
A 6. A r e you s t i l l w or k i n g? ( W o r k r e f e r s t o a pa i d oc c upa t i on or s e l f - e m pl oy m e nt , i nc l udi ng
f a r m i ng)
1. Y e s , w or ki ng f ul l - t i m e
96
2. Y e s , w or ki ng pa r t - t i m e
3. R e t i r e d
4. N e ve r w or ke d
A 7. H ow i s you r f i n an c i al s i t u at i on ?
1. V e r y di f f i c ul t
2. D i f f i c ul t
3. S o s o
4. C om f or t a bl e
5. V e r y c om f or t a bl e
A 8.1 A r e you l i vi n g al on e ?
1. Y e s ( S ki p t o P ar t B )
2. N o
A 8.2 Wh o ar e l i vi n g w i t h you r i gh t n ow ?
R e l at i on s h i p # of p e op l e
A 821 S pous e
A 822 P a r e nt s a nd pa r e nt s i n l a w
A 823 C hi l dr e n a nd c hi l dr e n i n l a w
A 824 G r a ndc hi l dr e n a nd g r a ndc hi l dr e n i n l a w
A 825 O t he r r e l a t i ve s
A 826 O t he r non- r e l a t i ve s
T o t a l num be r of pe opl e l i vi ng w i t h t he ol de r
a dul t , N O T i nc l udi ng t he ol de r a dul t
t he m s e l ve s
P ar t B . P h ys i c al H e al t h
N ow I ’ d l i k e t o as k you t w o q u e s t i on s ab ou t you r p h ys i c al h e al t h .
B 1. H ow w ou l d you r at e you r ove r al l p h ys i c al h e al t h ?
1. V e r y poor
2. P oor
3. F a i r
4. G ood
5. E x c e l l e nt
B 2. H ow i s you r c u r r e n t p h ys i c al h e al t h s t at u s c om p ar e d t o l as t ye ar ?
1. M uc h w or s e
2. A l i t t l e w or s e
3. A l m os t t he s a m e
4. A l i t t l e be t t e r
97
5. M uc h be t t e r
P ar t C . P s yc h ol ogi c al H e al t h ( C E S - D - S F )
N ow I ’ d l i k e t o as k you s om e q u e s t i on s ab ou t you r p s yc h ol ogi c al h e al t h c on d i t i on s . B e l ow
i s a l i s t of w ays you m ay h ave f e l t or b e h ave d i n t h e p as t w e e k . P l e as e i n d i c at e h ow of t e n
you h ave f e l t t h i s w ay .
1= R a r e l y or none of t he t i m e ( l e s s t ha n 1 da y )
2= S om e or a l i t t l e of t he t i m e ( 1- 2 da y s )
3= O c c a s i ona l l y or a m ode r a t e a m ount of t i m e ( 3- 4 da y s )
4= A l l of t he t i m e ( 5- 7 da y s )
S t at e m e n t S c or e
C 1. Y o u w e r e bot he r e d by t hi ng s t ha t us ua l l y don' t bot he r y o u. 1 2 3 4
C 2. Y o u ha d t r oubl e ke e pi ng y o ur m i nd on w ha t y o u w e r e doi ng . 1 2 3 4
C 3. Y o u f e l t de pr e s s e d. 1 2 3 4
C 4. Y o u f e l t t ha t e ve r y t hi ng y o u di d w a s a n e f f or t . 1 2 3 4
C 5. Y o u f e l t hope f ul a bout t he f ut ur e . 1 2 3 4
C 6. Y o u f e l t f e a r f ul . 1 2 3 4
C 7. Y o ur s l e e p w a s r e s t l e s s . 1 2 3 4
C 8. Y o u w e r e ha ppy . 1 2 3 4
C 9. Y o u f e l t l one l y . 1 2 3 4
C 10. Y o u c oul d not “ g e t g oi ng. ” 1 2 3 4
P ar t D . S oc i al S u p p or t ( L S N S - 6)
N ow I ’ d l i k e t o as k ab ou t t h e s oc i al s u p p or t you h ave r e c e i ve d f r om you r r e l at i ve s an d
f r i e n d s .
1= N one 2= O ne pe r s on 3= T w o pe r s ons 4= T hr e e or f our pe r s ons 5= F i ve a nd
a bove
Q u e s t i on S c or e
D 1. H ow m a ny r e l a t i ve s do y o u s e e or he a r f r om a t l e a s t onc e a
m ont h?
1 2 3 4 5
D 2. H ow m a ny r e l a t i ve s do y o u f e e l a t e a s e w i t h t ha t y o u c a n t a l k
a bout pr i va t e m a t t e r s ?
1 2 3 4 5
D 3. H ow m a ny r e l a t i ve s do y o u f e e l c l os e t o s uc h t ha t y o u c oul d
c a l l on t he m f or he l p?
1 2 3 4 5
D 4. H ow m a ny f r i e nds do y o u s e e or he a r f r om a t l e a s t onc e a
m ont h?
1 2 3 4 5
D 5. H ow m a ny f r i e nds do y o u f e e l a t e a s e w i t h t ha t y o u c a n t a l k
a bout pr i va t e m a t t e r s ?
1 2 3 4 5
98
D 6. H ow m a ny f r i e nds do y o u f e e l c l os e t o s uc h t ha t y o u c oul d
c a l l on t he m f or he l p?
1 2 3 4 5
P ar t E . M e an i n gs i n L i f e ( L i f e S c h e m e D om ai n i n S I WB )
P l e as e t ak e a m om e n t an d t h i n k ab ou t w h at m ak e s you f e e l t h at you r c u r r e n t l i f e i s
i m p or t an t an d m e an i n gf u l . T h e f ol l ow i n g s e n t e n c e d e s c r i b e s s om e f e e l i n gs or b e h avi or s .
P l e as e t e l l m e i f you agr e e w i t h t h i s d e s c r i p t i on . Y o u c an an s w e r s t r on gl y d i s agr e e , d i s agr e e ,
n e i t h e r d i s agr e e or agr e e ( n e u t r al ) , agr e e , an d s t r on gl y agr e e .
1= S t r ongl y di s a g r e e 2= D i s a gr e e 3= N e ut r a l 4= A gr e e 5= S t r ongl y a gr e e
S t at e m e n t S c or e
E 1. I ha ve n ’ t f ound m y l i f e ’ s pur pos e y e t . 1 2 3 4 5
E 2. I don’ t know w ho I a m , w he r e I c a m e f r om , or w he r e I a m
g oi ng.
1 2 3 4 5
E 3. I ha ve a l a c k of pur pos e i n m y l i f e . 1 2 3 4 5
E 4. I n t hi s w or l d, I don’ t know w he r e I f i t i n. 1 2 3 4 5
E 5. I a m f a r f r om unde r s t a ndi ng t he m e a ni ng of l i f e . 1 2 3 4 5
E 6. T he r e i s a g r e a t voi d i n m y l i f e a t t hi s t i m e . 1 2 3 4 5
P ar t F . A t t i t u d e s t ow ar d L i f e an d D e at h
I n t h i s f i n al p ar t , I ’ d l i k e t o as k you s om e q u e s t i on s ab ou t you r at t i t u d e s t ow ar d l i f e an d
d e at h . I f t h e r e i s a q u e s t i on t h at m ak e s you u n c om f or t ab l e , w e c an s k i p i t .
F A . K n ow l e d ge
I w a nt t o know i f y o u know s om e m e di c a l i nf or m a t i on r e l a t e d t o ol de r a dul t s . Y o u c a n a ns w e r do
not unde r s t a nd a t a l l / ne ve r he a r d of , do not unde r s t a nd, s o s o, unde r s t a nd a l i t t l e , a nd unde r s t a nd
a l ot .
1= do not unde r s t a nd a t a l l / ne ve r he a r d of
2= do not unde r s t a nd
3= s o s o
4= unde r s t a nd a l i t t l e
5= unde r s t a nd a l ot
( I n s t r u c t i on : P l e as e t ake n ot e s c ar e f u l l y . I f on e an s w e r s 1 t o 3, br i e f l y i n t r odu c e t h e c on c e pt .
I f on e an s w e r s 4 an d 5, as k t h e ol de r adu l t t o e xpl ai n i t . U s e y ou r be s t j u dge m e n t an d c h oos e
t h e n u m be r t h at w ou l d be s t de s c r i be an ol de r adu l t ’ s r e al u n de r s t an di n g of t h e c on c e pt .)
Q u e s t i on S c or e
F A 1. H ow m uc h do y o u know a bout a dva nc e c a r e pl a nni ng ? 1 2 3 4 5
F A 2. H ow m uc h do y o u know a bout l i f e - s us t a i ni ng t r e a t m e nt ? 1 2 3 4 5
99
F A 3. H ow m uc h do y o u know a bout hos pi c e ? 1 2 3 4 5
A d van c e c ar e p l an n i n g : M a ki ng de c i s i ons a bout t he he a l t hc a r e y o u w oul d w a nt t o r e c e i ve i f
y o u ha ppe n t o be c om e una bl e t o s pe a k f or y o ur s e l f . T hi s c a n i nc l ude t hi nki ng a bout , di s c us s i ng ,
or w r i t i ng dow n one ’ s c a r e pl a ns i n a dva nc e .
L i f e - s u s t ai n i n g t r e at m e n t : A ny t r e a t m e nt t ha t s e r ve s t o pr ol ong l i f e w i t hout r e ve r s i ng t he
unde r l y i ng m e di c a l c ondi t i on. T hi s m a y i nc l ude m e c ha ni c a l ve nt i l a t i on, r e na l di a l y s i s ,
c he m ot he r a py , a nt i bi ot i c s , a nd a r t i f i c i a l nut r i t i on a nd hy d r a t i on.
H os p i c e : A s pe c i a l ki nd of c a r e t ha t f oc us e s on t he qua l i t y of l i f e a nd pa i n a nd s y m pt om
m a na ge m e nt f or pe opl e a nd t he i r c a r e gi ve r s w ho a r e e x pe r i e nc i ng a n a dva nc e d, l i f e - l i m i t i ng
i l l ne s s or a t t he e nd- of - l i f e ( E O L ) .
F B . A t t i t u d e s an d B e h avi or
F B 1. D o y o u a gr e e t ha t a n ol de r a dul t s houl d c on s i d e r t he i r E O L w i s he s i n a dva nc e ? “ I n
a dva nc e ” r e f e r s t o w he n a pe r s on i s s t i l l he a l t hy , or i n t he e a r l y a nd m i ddl e s t a g e s of i l l ne s s .
O ne ’ s E O L w i s he s c a n be a ny t y p e of w i s h, i nc l udi ng phy s i c a l c a r e , ps y c h ol ogi c a l a nd s pi r i t ua l
s uppor t , f i na nc i a l a r r a nge m e nt s , f une r a l a r r a nge m e nt s , e t c .
1. S t r ong l y di s a gr e e , pl e a s e s pe c i f y _ ___________________ ( S ki p t o F B 5.1)
2. D i s a gr e e , pl e a s e s pe c i f y _ ___________________ ( S ki p t o F B 5.1)
3. N e ut r a l
4. A gr e e
5. S t r ong l y a gr e e
F B 2. D o y o u a gr e e t ha t a n ol de r a dul t s houl d w r i t e d ow n t he i r E O L w i s he s i n a dva nc e ?
1. S t r ong l y di s a gr e e
2. D i s a gr e e
3. N e ut r a l
4. A gr e e
5. S t r ong l y a gr e e
F B 2. D o y o u a gr e e t ha t a n ol de r a dul t s houl d d i s c u s s t he i r E O L w i s he s w i t h ot he r s i n a dva nc e ?
1. S t r ong l y di s a gr e e ( S ki p t o F B 5.1)
2. D i s a gr e e ( S ki p t o F B 5.1)
3. N e ut r a l ( S ki p t o F B 5.1)
4. A gr e e
5. S t r ong l y a gr e e
F B 3.2 W ho a r e y o u w i l l i ng t o di s c us s y o ur E O L w i s he s w i t h? ( C h e c k u n de r Y e s or N o)
Y e s N o
F B 32a H e a l t h c a r e pr of e s s i ona l s
F B 32b F a m i l y m e m be r s a nd r e l a t i ve s
100
F B 32c F r i e nds
F B 32d O t he r s , pl e a s e s pe c i f y :
F B 4.1 H a ve y o u a l r e a dy di s c us s e d y o ur E O L w i s he s w i t h a ny o ne ?
1. N o ( S ki p t o F B 5.1)
2. Y e s
F B 4.2 A bout t he s e w i s he s , w ho di d y o u di s c us s w i t h? ___________________
F B 4.3 H ow m a ny t i m e s ha ve y o u di s c us s e d? ___________________
F B 4.4 O n a ve r a ge , how l ong e a c h t i m e di d y o u di s c us s y o ur E O L w i s he s w i t h ot he r s ?
_________hour ( s ) __________m i nut e ( s )
F B 4.5 W ha t t y p e of E O L w i s he s ha ve y o u di s c us s e d? ( C h e c k u n de r Y e s or N o)
Y e s N o
F B 45a C a r e a nd t r e a t m e nt
F B 45b P s y c hol ogi c a l a nd s pi r i t ua l s uppor t
F B 45c F i na nc i a l a r r a nge m e nt
F B 45d F une r a l a r r a nge m e nt
F B 45e O t he r w i s he s , pl e a s e s pe c i f y :
F B 5.1 I f y o u ha ve a s e r i ous i l l ne s s , w oul d y o u l i ke t o know t he t r ut h, i nc l udi ng t he pr og nos i s ?
1. S t r ong l y di s a gr e e ( S ki p t o F C )
2. D i s a gr e e ( S ki p t o F C )
3. N e ut r a l ( S ki p t o F C )
4. A gr e e
5. S t r ong l y a gr e e
F B 5.2 I f y o u w a nt t o know t he t r ut h, w ho s houl d t e l l y o u a bout i t ? ( C h e c k u n de r Y e s or N o)
Y e s N o
F B 52a H e a l t h c a r e pr of e s s i ona l s
F B 52b F a m i l y m e m be r s a nd r e l a t i ve s
F B 52c F r i e nds or ot he r s , pl e a s e s pe c i f y :
F B 5.3 O nc e y o u know t he t r ut h, w ho s houl d m a ke m e di c a l de c i s i ons f or y o u?
1. B y y o ur s e l f
2. F a m i l y m e m be r s a nd r e l a t i ve s , s pe c i f y : ___________________________________
3. H e a l t h c a r e pr of e s s i ona l s
4. O t he r s , s pe c i f y : ____________________________________
5. T o g e t he r , s pe c i f y : ______________________________________
F C . D e at h A n xi e t y ( D A Q )
101
A t t h e e n d , b e l ow ar e s om e q u e s t i on s as k i n g you ab ou t c e r t ai n f e e l i n gs an d b e h avi or s
t ow ar d l i f e an d d e at h . P l e as e l e t m e k n ow h ow you f e e l ab ou t i t . Y o u c an an s w e r n ot at al l ,
a l i t t l e , or a l ot .
1= N ot a t a l l 2= A l i t t l e 3= A l ot
Q u e s t i on S c or e
F C 1. D o y o u w or r y a bout dy i ng? 1 2 3
F C 2. D oe s i t bot he r y o u t ha t y o u m a y di e be f or e y o u ha ve done e ve r y t hi ng
y o u w a nt e d t o do?
1 2 3
F C 3. D o y o u w or r y t ha t y o u m a y be ve r y i l l f or a l ong t i m e be f or e y o u di e ? 1 2 3
F C 4. D oe s i t ups e t y o u t o t hi nk ot he r s m a y s e e y o u s uf f e r i ng be f or e y o u
di e ?
1 2 3
F C 5. D o y o u w or r y t ha t dy i ng m a y be ve r y pa i nf ul ? 1 2 3
F C 6. D o y o u w or r y t ha t no one w i l l c a r e f or y o u be f or e y o u di e ? 1 2 3
F C 7. D o y o u w or r y t ha t y o u m a y be a l one w he n y o u a r e dy i ng? 1 2 3
F C 8. D oe s t he t houg ht bot he r y o u t ha t y o u m i g ht l os e c ont r ol of y o ur m i nd
be f or e de a t h?
1 2 3
F C 9. D o y o u w or r y t ha t e x pe ns e s c onne c t e d w i t h y o ur de a t h w i l l be bur de n
t o ot he r pe opl e ?
1 2 3
F C 10. D oe s i t w or r y y o u t ha t y o ur i ns t r uc t i ons or w i l l a bout y o ur
be l ongi ng s m a y not be c a r r i e d out a f t e r y o u di e ?
1 2 3
F C 1 1 . D oe s t he t houg ht of l e a vi ng l ove d one s be hi nd w he n y o u di e di s t ur b
y o u?
1 2 3
F C 12. D o y o u w or r y t ha t t hos e y o u c a r e a bout m a y not r e m e m be r y o u a f t e r
y o ur de a t h?
1 2 3
F C 13. D oe s t he t houg ht w or r y y o u t ha t w i t h de a t h y o u m a y be g one
f or e ve r ?
1 2 3
F C 14. A r e y o u w or r i e d a bout not know i ng w ha t t o e x pe c t a f t e r de a t h?
1 2 3
Y o u h ave c om p l e t e d t h e s u r ve y . T h an k you ve r y m u c h f or you r t i m e an d c oop e r at i on !
102
A p p e n d i x V : T 1 A s s e s s m e n t Q u e s t i on s
O l d e r A d u l t N am e : __________________ O l d e r A d u l t I D : __________________
I n t e r vi e w e r N am e : __________________ D at e / T i m e : ________________
T h an k you f or you r w i l l i n gn e s s t o p ar t i c i p at e i n t h i s s u r ve y agai n . Ju s t l i k e l as t t i m e , I w i l l
as k s om e q u e s t i on s ab ou t you r p h ys i c al an d m e n t al h e al t h . I f you d o n ot w an t t o an s w e r a
q u e s t i on , p l e as e l e t m e k n ow an d w e w i l l s k i p t o t h e n e xt q u e s t i on . Y o u r an s w e r s w i l l b e
k e p t s t r i c t l y c on f i d e n t i al . T h i s q u e s t i on n ai r e t ak e s ab ou t 15- 20 m i n u t e s t o c om p l e t e .
( I n s t r u c t i on s : F i l l i n or c i r c l e t h e c or r e c t an s w e r . P l e as e c i r c l e t h e n u m be r s , n ot be t w e e n t h e
n u m be r s . I f n e c e s s ar y , pl e as e t ake n ot e s i n t h e bl an k s pac e , s u c h as " don ’ t w an t t o an s w e r " ,
" don ' t kn ow " , " n ot appl i c abl e " , e t c .)
P ar t C . P s yc h ol ogi c al H e al t h ( C E S - D - S F )
N ow I ’ d l i k e t o as k you s om e q u e s t i on s ab ou t you r p s yc h ol ogi c al h e al t h c on d i t i on s . B e l ow
i s a l i s t of w ays you m ay h ave f e l t or b e h ave d i n t h e p as t w e e k . P l e as e i n d i c at e h ow of t e n
you h ave f e l t t h i s w ay .
1= R a r e l y or none of t he t i m e ( l e s s t ha n 1 da y )
2= S om e or a l i t t l e of t he t i m e ( 1- 2 da y s )
3= O c c a s i ona l l y or a m ode r a t e a m ount of t i m e ( 3- 4 da y s )
4= A l l of t he t i m e ( 5- 7 da y s )
S t at e m e n t S c or e
C 1. Y o u w e r e bot he r e d by t hi ng s t ha t us ua l l y don' t bot he r y o u. 1 2 3 4
C 2. Y o u ha d t r oubl e ke e pi ng y o ur m i nd on w ha t y o u w e r e doi ng . 1 2 3 4
C 3. Y o u f e l t de pr e s s e d. 1 2 3 4
C 4. Y o u f e l t t ha t e ve r y t hi ng y o u di d w a s a n e f f or t . 1 2 3 4
C 5. Y o u f e l t hope f ul a bout t he f ut ur e . 1 2 3 4
C 6. Y o u f e l t f e a r f ul . 1 2 3 4
C 7. Y o ur s l e e p w a s r e s t l e s s . 1 2 3 4
C 8. Y o u w e r e ha ppy . 1 2 3 4
C 9. Y o u f e l t l one l y . 1 2 3 4
C 10. Y o u c oul d not “ g e t g oi ng. ” 1 2 3 4
P ar t D . S oc i al S u p p or t ( L S N S - 6)
N ow I ’ d l i k e t o as k ab ou t t h e s oc i al s u p p or t you h ave r e c e i ve d f r om you r r e l at i ve s an d
f r i e n d s .
1= N one 2= O ne pe r s on 3= T w o pe r s ons 4= T hr e e or f our pe r s ons 5= F i ve a nd
a bove
103
Q u e s t i on S c or e
D 1. H ow m a ny r e l a t i ve s do y o u s e e or he a r f r om a t l e a s t onc e a
m ont h?
1 2 3 4 5
D 2. H ow m a ny r e l a t i ve s do y o u f e e l a t e a s e w i t h t ha t y o u c a n t a l k
a bout pr i va t e m a t t e r s ?
1 2 3 4 5
D 3. H ow m a ny r e l a t i ve s do y o u f e e l c l os e t o s uc h t ha t y o u c oul d
c a l l on t he m f or he l p?
1 2 3 4 5
D 4. H ow m a ny f r i e nds do y o u s e e or he a r f r om a t l e a s t onc e a
m ont h?
1 2 3 4 5
D 5. H ow m a ny f r i e nds do y o u f e e l a t e a s e w i t h t ha t y o u c a n t a l k
a bout pr i va t e m a t t e r s ?
1 2 3 4 5
D 6. H ow m a ny f r i e nds do y o u f e e l c l os e t o s uc h t ha t y o u c oul d
c a l l on t he m f or he l p?
1 2 3 4 5
P ar t E . M e an i n gs i n L i f e ( L i f e S c h e m e D om ai n i n S I WB )
P l e as e t ak e a m om e n t an d t h i n k ab ou t w h at m ak e s you f e e l t h at you r c u r r e n t l i f e i s
i m p or t an t an d m e an i n gf u l . T h e f ol l ow i n g s e n t e n c e d e s c r i b e s s om e f e e l i n gs or b e h avi or s .
P l e as e t e l l m e i f you agr e e w i t h t h i s d e s c r i p t i on . Y o u c an an s w e r s t r on gl y d i s agr e e , d i s agr e e ,
n e i t h e r d i s agr e e or agr e e ( n e u t r al ) , agr e e , an d s t r on gl y agr e e .
1= S t r ongl y di s a g r e e 2= D i s a gr e e 3= N e ut r a l 4= A gr e e 5= S t r ongl y a gr e e
S t at e m e n t S c or e
E 1. I ha ve n ’ t f ound m y l i f e ’ s pur pos e y e t . 1 2 3 4 5
E 2. I don’ t know w ho I a m , w he r e I c a m e f r om , or w he r e I a m
g oi ng.
1 2 3 4 5
E 3. I ha ve a l a c k of pur pos e i n m y l i f e . 1 2 3 4 5
E 4. I n t hi s w or l d, I don’ t know w he r e I f i t i n. 1 2 3 4 5
E 5. I a m f a r f r om unde r s t a ndi ng t he m e a ni ng of l i f e . 1 2 3 4 5
E 6. T he r e i s a g r e a t voi d i n m y l i f e a t t hi s t i m e . 1 2 3 4 5
P ar t F . A t t i t u d e s t ow ar d L i f e an d D e at h
I n t h i s f i n al p ar t , I ’ d l i k e t o as k you s om e q u e s t i on s ab ou t you r at t i t u d e s t ow ar d l i f e an d
d e at h . I f t h e r e i s a q u e s t i on t h at m ak e s you u n c om f or t ab l e , w e c an s k i p i t .
F A . K n ow l e d ge
I w a nt t o know i f y o u know s om e m e di c a l i nf or m a t i on r e l a t e d t o ol de r a dul t s . Y o u c a n a ns w e r do
not unde r s t a nd a t a l l / ne ve r he a r d of , do not unde r s t a nd, s o s o, unde r s t a nd a l i t t l e , a nd unde r s t a nd
a l ot .
1= do not unde r s t a nd a t a l l / ne ve r he a r d of
2= do not unde r s t a nd
3= s o s o
104
4= unde r s t a nd a l i t t l e
5= unde r s t a nd a l ot
( I n s t r u c t i on : P l e as e t ake n ot e s c ar e f u l l y . I f on e an s w e r s 1 t o 3, br i e f l y i n t r odu c e t h e c on c e pt .
I f on e an s w e r s 4 an d 5, as k t h e ol de r adu l t t o e xpl ai n i t . U s e y ou r be s t j u dge m e n t an d c h oos e
t h e n u m be r t h at w ou l d be s t de s c r i be an ol de r adu l t ’ s r e al u n de r s t an di n g of t h e c on c e pt .)
Q u e s t i on S c or e
F A 1. H ow m uc h do y o u know a bout a dva nc e c a r e pl a nni ng ? 1 2 3 4 5
F A 2. H ow m uc h do y o u know a bout l i f e - s us t a i ni ng t r e a t m e nt ? 1 2 3 4 5
F A 3. H ow m uc h do y o u know a bout hos pi c e ? 1 2 3 4 5
A d van c e c ar e p l an n i n g : M a ki ng de c i s i ons a bout t he he a l t hc a r e y o u w oul d w a nt t o r e c e i ve i f
y o u ha ppe n t o be c om e una bl e t o s pe a k f or y o ur s e l f . T hi s c a n i nc l ude t hi nki ng a bout , di s c us s i ng ,
or w r i t i ng dow n one ’ s c a r e pl a ns i n a dva nc e .
L i f e - s u s t ai n i n g t r e at m e n t : A ny t r e a t m e nt t ha t s e r ve s t o pr ol ong l i f e w i t hout r e ve r s i ng t he
unde r l y i ng m e di c a l c ondi t i on. T hi s m a y i nc l ude m e c ha ni c a l ve nt i l a t i on, r e na l di a l y s i s ,
c he m ot he r a py , a nt i bi ot i c s , a nd a r t i f i c i a l nut r i t i on a nd hy d r a t i on.
H os p i c e : A s pe c i a l ki nd of c a r e t ha t f oc us e s on t he qua l i t y of l i f e a nd pa i n a nd s y m pt om
m a na ge m e nt f or pe opl e a nd t he i r c a r e gi ve r s w ho a r e e x pe r i e nc i ng a n a dva nc e d, l i f e - l i m i t i ng
i l l ne s s or a t t he e nd- of - l i f e ( E O L ) .
F B . A t t i t u d e s an d B e h avi or
F B 1. D o y o u a gr e e t ha t a n ol de r a dul t s houl d c on s i d e r t he i r E O L w i s he s i n a dva nc e ? “ I n
a dva nc e ” r e f e r s t o w he n a pe r s on i s s t i l l he a l t hy , or i n t he e a r l y a nd m i ddl e s t a g e s of i l l ne s s .
O ne ’ s E O L w i s he s c a n be a ny t y p e of w i s h, i nc l udi ng phy s i c a l c a r e , ps y c h ol ogi c a l a nd s pi r i t ua l
s uppor t , f i na nc i a l a r r a nge m e nt s , f une r a l a r r a nge m e nt s , e t c .
1. S t r ong l y di s a gr e e , pl e a s e s pe c i f y _ ___________________ ( S ki p t o F B 5.1)
2. D i s a gr e e , pl e a s e s pe c i f y _ ___________________ ( S ki p t o F B 5.1)
3. N e ut r a l
4. A gr e e
5. S t r ong l y a gr e e
F B 2. D o y o u a gr e e t ha t a n ol de r a dul t s houl d w r i t e d ow n t he i r E O L w i s he s i n a dva nc e ?
1. S t r ong l y di s a gr e e
2. D i s a gr e e
3. N e ut r a l
4. A gr e e
5. S t r ong l y a gr e e
F B 2. D o y o u a gr e e t ha t a n ol de r a dul t s houl d d i s c u s s t he i r E O L w i s he s w i t h ot he r s i n a dva nc e ?
105
1. S t r ong l y di s a gr e e ( S ki p t o F B 5.1)
2. D i s a gr e e ( S ki p t o F B 5.1)
3. N e ut r a l ( S ki p t o F B 5.1)
4. A gr e e
5. S t r ong l y a gr e e
F B 3.2 W ho a r e y o u w i l l i ng t o di s c us s y o ur E O L w i s he s w i t h? ( C h e c k u n de r Y e s or N o)
Y e s N o
F B 32a H e a l t h c a r e pr of e s s i ona l s
F B 32b F a m i l y m e m be r s a nd r e l a t i ve s
F B 32c F r i e nds
F B 32d O t he r s , pl e a s e s pe c i f y :
F B 4.1 D U R I N G T H E P A S T W E E K , ha ve y o u di s c us s e d y o ur E O L w i s he s w i t h a ny o ne ?
1. N o ( S ki p t o F B 5.1)
2. Y e s
F B 4.2 A bout t he s e w i s he s , w ho di d y o u di s c us s w i t h? ___________________
F B 4.3 H ow m a ny t i m e s ha ve y o u di s c us s e d? ___________________
F B 4.4 O n a ve r a ge , how l ong e a c h t i m e di d y o u di s c us s y o ur E O L w i s he s w i t h ot he r s ?
_________hour ( s ) __________m i nut e ( s )
F B 4.5 W ha t t y p e of E O L w i s he s ha ve y o u di s c us s e d? ( C h e c k u n de r Y e s or N o)
Y e s N o
F B 45a C a r e a nd t r e a t m e nt
F B 45b P s y c hol ogi c a l a nd s pi r i t ua l s uppor t
F B 45c F i na nc i a l a r r a nge m e nt
F B 45d F une r a l a r r a nge m e nt
F B 45e O t he r w i s he s , pl e a s e s pe c i f y :
F B 5.1 I f y o u ha ve a s e r i ous i l l ne s s , w oul d y o u l i ke t o know t he t r ut h, i nc l udi ng t he pr og nos i s ?
1. S t r ong l y di s a gr e e ( S ki p t o F C )
2. D i s a gr e e ( S ki p t o F C )
3. N e ut r a l ( S ki p t o F C )
4. A gr e e
5. S t r ong l y a gr e e
F B 5.2 I f y o u w a nt t o know t he t r ut h, w ho s houl d t e l l y o u a bout i t ? ( C h e c k u n de r Y e s or N o)
Y e s N o
F B 52a H e a l t h c a r e pr of e s s i ona l s
F B 52b F a m i l y m e m be r s a nd r e l a t i ve s
F B 52c F r i e nds or ot he r s , pl e a s e s pe c i f y :
106
F B 5.3 O nc e y o u know t he t r ut h, w ho s houl d m a ke m e di c a l de c i s i ons f or y o u?
1. B y y o ur s e l f
2. F a m i l y m e m be r s a nd r e l a t i ve s , s pe c i f y : ___________________________________
3. H e a l t h c a r e pr of e s s i ona l s
4. O t he r s , s pe c i f y : ____________________________________
5. T o g e t he r , s pe c i f y : ______________________________________
F C . D e at h A n xi e t y ( D A Q )
A t t h e e n d , b e l ow ar e s om e q u e s t i on s as k i n g you ab ou t c e r t ai n f e e l i n gs an d b e h avi or s
t ow ar d l i f e an d d e at h . P l e as e l e t m e k n ow h ow you f e e l ab ou t i t . Y o u c an an s w e r n ot at al l ,
a l i t t l e , or a l ot .
1= N ot a t a l l 2= A l i t t l e 3= A l ot
Q u e s t i on S c or e
F C 1. D o y o u w or r y a bout dy i ng? 1 2 3
F C 2. D oe s i t bot he r y o u t ha t y o u m a y di e be f or e y o u ha ve done e ve r y t hi ng
y o u w a nt e d t o do?
1 2 3
F C 3. D o y o u w or r y t ha t y o u m a y be ve r y i l l f or a l ong t i m e be f or e y o u di e ? 1 2 3
F C 4. D oe s i t ups e t y o u t o t hi nk ot he r s m a y s e e y o u s uf f e r i ng be f or e y o u
di e ?
1 2 3
F C 5. D o y o u w or r y t ha t dy i ng m a y be ve r y pa i nf ul ? 1 2 3
F C 6. D o y o u w or r y t ha t no one w i l l c a r e f or y o u be f or e y o u di e ? 1 2 3
F C 7. D o y o u w or r y t ha t y o u m a y be a l one w he n y o u a r e dy i ng? 1 2 3
F C 8. D oe s t he t houg ht bot he r y o u t ha t y o u m i g ht l os e c ont r ol of y o ur m i nd
be f or e de a t h?
1 2 3
F C 9. D o y o u w or r y t ha t e x pe ns e s c onne c t e d w i t h y o ur de a t h w i l l be bur de n
t o ot he r pe opl e ?
1 2 3
F C 10. D oe s i t w or r y y o u t ha t y o ur i ns t r uc t i ons or w i l l a bout y o ur
be l ongi ng s m a y not be c a r r i e d out a f t e r y o u di e ?
1 2 3
F C 1 1 . D oe s t he t houg ht of l e a vi ng l ove d one s be hi nd w he n y o u di e di s t ur b
y o u?
1 2 3
F C 12. D o y o u w or r y t ha t t hos e y o u c a r e a bout m a y not r e m e m be r y o u a f t e r
y o ur de a t h?
1 2 3
F C 13. D oe s t he t houg ht w or r y y o u t ha t w i t h de a t h y o u m a y be g one
f or e ve r ?
1 2 3
F C 14. A r e y o u w or r i e d a bout not know i ng w ha t t o e x pe c t a f t e r de a t h?
1 2 3
Y o u h ave c om p l e t e d t h e s u r ve y . T h an k you ve r y m u c h f or you r t i m e an d c oop e r at i on !
Abstract (if available)
Abstract
Background: We live in a death-denying society, but not planning for death and dying in advance might leave individuals and the family with unfinished business and regrets. Chinese societies are rapidly aging, and it has been increasingly significant to provide death education to enlighten the public on the importance of making plans and the information of current end-of-life care services and support. However, such educational programs are lacking in the literature. ❧ Aim: To fill the void in the literature, my team designed a culturally sensitive death education program titled “My Life, My Wishes” based on the Knowledge, Attitude, and Behavior model. We further conducted expert consultation interviews with Chinese healthcare professionals, geriatric researchers, and older hospice volunteers to solicit their attitudes toward death education and death-related discussions, perspectives for barriers in and facilitators for conducting death education in China, and their detailed feedback for our death education program. After that, the program was pilot tested in China to examine its feasibility and impact on older Chinese community residents’ death-related knowledge, attitudes, and advance planning behavior. Finally, we tested the feasibility of using a card game for soliciting participants’ end-of-life wishes and preferences. Their card selections were recorded and reasons were quoted. ❧ Methods: This was a two-stage study. In Stage IA, after the development of the program, we conducted in-depth phone interviews with a group of Chinese HCPs, geriatric researchers, and community-dwelling older adults who are familiar with the subject matter, to gather different stakeholders’ opinions and attitudes toward death education and their specific feedback for our program. The directed content analysis was used for the qualitative data analysis. After that, the program details were revised to be prepared for delivery in China. ❧ Stage IB was a quasi-experimental pre- and post-test comparison group study to examine the feasibility and impacts of the “My Life, My Wishes” death education program among a group of community-dwelling older adults in Lanzhou, China, on death-related knowledge (knowledge on advance care planning, life-sustaining treatment, and hospice care), attitudes (whether an older adult should consider, write down, and discuss their end-of-life wishes in advance; death anxiety), and advance planning behavior (whether one has had any death-related discussions in the past week). The program lasted from October 2020 to January 2021. Repeated measures ANOVAs, t-test, and chi-square test were used for the analysis. ❧ A variety of interactive activities were conducted during the program, including the Go Wish cards game, in which participants were asked to select their most important wishes at the end of life and the reasons behind their selections. They were also asked about challenges that might occur for fulfilling those wishes and what could be done starting from the moment to help them achieve the wishes. Their selection of cards was described in the table and quotations were used to illustrate their explanations. ❧ Results: A total of 12 healthcare professionals/geriatric researchers and four older adult experts participated in Stage IA of the study. Overall, they held a positive attitude toward death education for the Chinese general public; however, significant challenges exist on micro, mezzo, and macro levels, based on their research, practice, and volunteer experiences. These include death taboo in Chinese culture, lack of knowledge on EOL care among healthcare professionals and the general population, health care agencies lacking resources, agencies not able to maintain volunteers, and China not having a legal document for one’s end-of-life wishes. Interviewees also provided detailed feedback for the program content and delivery regarding recruitment, preparation, relationship building before delivering the program, language and terms, content and format, and length of the program. They also offered suggestions for future death education programs in China, such as possible target populations, volunteer management, and greater support needed from management people of health care agencies, community organizations, the government, and society as a whole. ❧ Regarding Stage IB results, 29 older adults were recruited as intervention group (IG) participants and 34 as control group (CG) participants. Among IG, 23 participated in the death education program. These include 21 participants who completed both sessions, and two participated in one session, reaching an attendance rate of 72.4% for two sessions and 79.3% for one session. For post-intervention assessment, 19 IG participants and 26 CG participants completed it, with 65.5% and 76.5% completion rates, respectively. Using the intention-to-treat analysis, results of repeated measures ANOVAs showed that the increase in knowledge on advance care planning of IG compared to CG at post-test was statistically significant (F=6.458, p=0.014). Additionally, using a t-test, at post-test, IG participants had a more positive attitude toward discussing EOL wishes with others in advance (p=0.044). Although not significant, four IG participants had conversations about their EOL wishes with others, while only one CG participant had such discussions during the past week. ❧ Regarding playing the Go Wish cards, among 21 IG participants who attended the session that included the game, 20 completed the game. Participants successfully selected their most important wishes in physical, psychological/spiritual, social, and financial aspects. Two challenges they mentioned in fulfilling their wishes are potential family conflicts regarding the older adult’s care choices and family living far away, thus lacking an opportunity to have such discussions with them. Meanwhile, they recognized the importance of having death-related conversations at an earlier stage of life/illness, and one merit of the program is helping them re-think the truth-withholding issue in China. ❧ Conclusion: This study is one of the first steps to deliver death education and have death-related discussions to community-dwelling Chinese older adults, a population that needs such conversation but lacks opportunities. A great number of implications for research, practice, and policy were drawn from this series of studies, add we recommend that future researchers and practitioners take them into consideration to promote the death education movement to a wider context in China’s society.
Linked assets
University of Southern California Dissertations and Theses
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Asset Metadata
Creator
Liu, Mandong
(author)
Core Title
My Life, My Wishes, a death education program for community-dwelling Chinese older adults: development and pilot testing
School
Suzanne Dworak-Peck School of Social Work
Degree
Doctor of Philosophy
Degree Program
Social Work
Degree Conferral Date
2021-12
Publication Date
10/09/2021
Defense Date
10/08/2021
Publisher
University of Southern California
(original),
University of Southern California. Libraries
(digital)
Tag
Chinese,death education,Go Wish,interview,OAI-PMH Harvest,older adult,pilot testing
Format
application/pdf
(imt)
Language
English
Contributor
Electronically uploaded by the author
(provenance)
Advisor
Chi, Iris (
committee chair
), Enguidanos, Susan (
committee member
), Jang, Yuri (
committee member
)
Creator Email
mandongl@usc.edu,mliu0206@163.com
Permanent Link (DOI)
https://doi.org/10.25549/usctheses-oUC16207863
Unique identifier
UC16207863
Legacy Identifier
etd-LiuMandong-10154
Document Type
Dissertation
Format
application/pdf (imt)
Rights
Liu, Mandong
Type
texts
Source
University of Southern California
(contributing entity),
University of Southern California Dissertations and Theses
(collection)
Access Conditions
The author retains rights to his/her dissertation, thesis or other graduate work according to U.S. copyright law. Electronic access is being provided by the USC Libraries in agreement with the author, as the original true and official version of the work, but does not grant the reader permission to use the work if the desired use is covered by copyright. It is the author, as rights holder, who must provide use permission if such use is covered by copyright. The original signature page accompanying the original submission of the work to the USC Libraries is retained by the USC Libraries and a copy of it may be obtained by authorized requesters contacting the repository e-mail address given.
Repository Name
University of Southern California Digital Library
Repository Location
USC Digital Library, University of Southern California, University Park Campus MC 2810, 3434 South Grand Avenue, 2nd Floor, Los Angeles, California 90089-2810, USA
Repository Email
cisadmin@lib.usc.edu
Tags
death education
Go Wish
older adult
pilot testing