“It’s Just Par t of L ife ” Patie nt Ac c e ptanc e of Distr ibution of Advanc e Car e Planning Mate r ials at Hospital Admission Wrig le y H MD, Sta nde rwic k L BSc , Cha n T MD, Gho sh S PhD Psta t, Simo n J MB ChB
A q ue stio n fo r the a udie nc e :
A q ue stio n fo r the a udie nc e : Do YOU ha ve a pe rso na l dire c tive (‘ living will’ )?
A mo re inte re sting q ue stio n:
A mo re inte re sting q ue stio n: Are yo u upse t tha t I a ske d?
T he F ac ts: Up to 76% o f dying pa tie nts will b e una b le to pa rtic ipa te in so me o r a ll o f the ir c a re de c isio ns a t the e nd o f life . 1,2
T he F ac ts: Adva nc e c a re pla nning c a n inc re a se c o mplia nc e with pa tie nts’ e nd-o f-life wishe s a nd impro ve the ir c a re . 2,3,4,5,6
T he F ac ts: Pub lic a nd pa tie nt surve ys sho w tha t ma ny a dults ha ve no t do ne a dva nc e c a re pla nning . 4,6,8,9,10
T he F ac ts: Surve ys o f he a lth c a re pro vide rs sho w tha t we do no t b ring up ACP, pa rtly b e c a use we fe a r tha t pa tie nts will find it upse tting . 6,11
Albe r ta He alth Se r vic e s de ve lope d this bookle t for the public , to he lp e duc ate the m about Advanc e Car e Planning…
Alb e rta He a lth Se rvic e s de ve lo pe d this b o o kle t fo r the pub lic , to he lp e duc a te the m a b o ut Adva nc e Ca re Pla nning … BUT …
Alb e rta He a lth Se rvic e s de ve lo pe d this b o o kle t fo r the pub lic , to he lp e duc a te the m a b o ut Adva nc e Ca re Pla nning … BUT … the Co nve r satio ns Matte r guide book is not r outine ly give n to Albe r ta patie nts at the time of a hospital admission
Alb e rta He a lth Se rvic e s de ve lo pe d this b o o kle t fo r the pub lic , to he lp e duc a te the m a b o ut Adva nc e Ca re Pla nning … BUT … the Co nve rsatio ns Matte r g uide b o o k is no t ro utine ly g ive n to Alb e rta pa tie nts a t the time o f a ho spita l a dmissio n- possibly in par t be c ause pr ovide r s fe ar that it might upse t patie nts.
We wa nte d to kno w if the re wa s a ny g ro unds fo r tha t c o nc e rn.
We pro po se d to ha nd o ut the b o o kle t to ho spita l inpa tie nts, a nd the n a sk ho w the y fe lt a b o ut it.
Me tho ds: F e b rua ry a nd Ma rc h 2015 F MC Unit 46 (ho spita list, o nc o lo g y, me dic ine ) & F MC Unit 62 (me dic ine ) 100 pa tie nts
E xc lusio n Crite ria : c urre nt c o g nitive impa irme nt insuffic ie nt E ng lish flue nc y to unde rsta nd the surve y o r a nswe r the q ue stio ns
T he Pro to c o l: pa tie nts re c e ive d the b o o kle t a t a dmissio n re se a rc he r visite d units da ily to ide ntify ne w pa tie nts re se a rc he r a ppro a c he d b e dside nurse to a sk a b o ut pa tie nts’ E ng lish flue nc y a nd c o g nitio n if a ppro pria te , nurse a ske d pa tie nt if the y we re willing to me e t re se a rc he r
T he Pro to c o l: re se a rc he r e xpla ine d study a nd g o t c o nse nt re se a rc he r a ske d if pa tie nt ha d re a d b o o kle t if ye s: a dministe re d surve y ve rb a lly if no : o ffe re d to re a d b o o kle t to the m, the n a dministe re d surve y a fte rwa rd OR e nc o ura g e d pa tie nt to re a d b o o kle t, a nd re turne d a no the r da y to do surve y
Sa mple Size : de sc riptive study po pula tio n o f b o th units ~76 pa tie nts a ssume d ma rg in o f e rro r: 6% de sire d c o nfide nc e le ve l: 95% minimum pa rtic ipa nts ne e de d: 60
E thic s: Appro ve d b y the Unive rsity o f Ca lg a ry Co njo int He a lth Re se a rc h E thic s Bo a rd RE B c e rtific a tio n RE B14-1176
Our pa rtic ipa nts: 100 pa tie nts Ag e ra ng e 22 to 98 (me a n 70) 40% fe ma le ; 60% ma le
T he r e sults…
Qua ntita tive q ue stio ns (L ike rt sc a le ):
Ho w muc h o f the Co nve rsatio ns Matte r b o o kle t did yo u re a d? I didn’ t re a d a ny o f it, o r I do n’ t kno w o r do n’ t re me mb e r I skimme d it I re a d a b o ut ha lf o f it I re a d mo st o f it I re a d the who le thing
Ho w muc h o f the Co nve rsatio ns Matte r b o o kle t did yo u re a d? I didn’ t re a d a ny o f it, o r I do n’ t kno w o r do n’ t re me mb e r: 0%* 0%* skimme d it: 27% 27% I re a d a b o ut ha lf o f it: 11% 11% I re a d mo st o f it: 13% 13% I re a d the who le thing : 49% 9% I
Ho w he lpful did yo u think the b o o kle t wa s? I t wa s c o mple te ly use le ss I t wa s a tiny b it he lpful I t wa s so me wha t he lpful I t wa s q uite he lpful I t wa s e xtre me ly he lpful I do n’ t kno w o r do n’ t re me mb e r
Ho w he lpful did yo u think the b o o kle t wa s? t wa s c o mple te ly use le ss: 2% 2% I t wa s a tiny b it he lpful : 2% 2% I t wa s so me wha t he lpful : 6% 6% I t wa s q uite he lpful: 31% I t wa s e xtre me ly he lpful: 54 54% I do n’ t kno w o r do n’ t re me mb e r: 5% 5% I
Ho w did yo u fe e l whe n yo u re a d the b o o kle t? I wa sn’ t upse t b y it a t a ll I t ma de me a tiny b it upse t I t ma de me so me wha t upse t I t ma de me q uite upse t I t ma de me e xtre me ly upse t I do n’ t kno w o r do n’ t re me mb e r
Ho w did yo u fe e l whe n yo u re a d the b o o kle t? wa sn’ t upse t b y it a t a ll: 88% 88% I t ma de me a tiny b it upse t: 9% 9% I t ma de me so me wha t upse t: 1% I t ma de me q uite upse t: 0% I t ma de me e xtre me ly upse t: 1% I do n’ t kno w o r do n’ t re me mb e r : 1% 1% I
Wha t do yo u think a b o ut the ide a o f g iving this g uide b o o k o ut to e ve ryb o dy who c o me s into the ho spita l? I think g iving it to e ve ryo ne is a g re a t ide a I think it’ s o ka y to g ive it to e ve ryo ne I do n’ t think it ma tte rs o ne wa y o r the o the r I do n’ t think it’ s o ka y to g ive it to e ve ryo ne I think g iving it to e ve ryo ne is a te rrib le ide a I do n’ t kno w
Wha t do yo u think a b o ut the ide a o f g iving this g uide b o o k o ut to e ve ryb o dy who c o me s into the ho spita l? think g iving it to e ve ryo ne is a g re a t ide a : 65% 5% I think it’ s o ka y to g ive it to e ve ryo ne : 21% I do n’ t think it ma tte rs o ne wa y o r the o the r: 1% I do n’ t think it’ s o ka y to g ive it to e ve ryo ne : 9% 9% I think g iving it to e ve ryo ne is a te rrib le ide a : 3% I do n’ t kno w : 1% 1% I
Qua lita tive q ue stio ns:
Ma y I a sk why yo u c ho se tha t a nswe r? Sho uld g ive to a ll b e c a use ACP is impo rta nt: 24% 4% So me mig ht b e upse t, b ut sho uldn’ t b e : 17% 7% Sho uld g ive o nly (o r e spe c ia lly) to o lde r pe o ple : 16% 6% Sho uld g ive o nly to pe o ple with se rio us illne ss: 8% 8% Giving to e ve ryo ne is ha rmle ss: 7% 7%
Ma y I a sk why yo u c ho se tha t a nswe r? Give to a ll; the y c a n de c ide to re a d o r no t: 6% Ma ny pe o ple wo n’ t re a d it : 6% Giving to a ll is wa ste ful (o f pa pe r o r mo ne y): 3% Sho uld g ive b o th in a nd o utside o f ho spita l: 2% Sho uld no t g ive to a ll b e c a use no t use ful: 1%
Do yo u ha ve a ny o the r tho ug hts? he g uide b o o k is info rma tive : 27% 7% T Adva nc e c a re pla nning is impo rta nt : 21% Pe o ple sho uldn’ t b e upse t re : disc ussing ACP: 17% 7% ACP is just pa rt o f life a nd/ o r a dultho o d: 17% 7% Do ing ACP is a ppro pria te fo r pe o ple o f a ll a g e s: 6% 6%
Do yo u ha ve a ny o the r tho ug hts? Do ing a dva nc e c a re pla nning is inte re sting : 5% Co mmunic a ting yo ur wishe s is impo rta nt : 5% Do ing ACP c a n g ive yo u pe a c e o f mind: 4%
Sta tistic a l Ana lysis: A Pe a rso n c hi-sq ua re te st fo und no a g e o r g e nde r diffe re nc e s b e twe e n a ny o f the re spo nse s.
Disc ussio n: Pa tie nts we re a c c e pting o f a dva nc e c a re pla nning ma te ria ls Pa tie nts fo und the ACP ma te ria ls he lpful Mo st we re in fa vo ur o f ro utine ly distrib uting the m to a ll pa tie nts A size a b le mino rity sug g e ste d ta rg e te d distrib utio n inste a d
Disc ussio n: Our finding s a re c o nsiste nt with the re sults o f simila r studie s in the U.S. 15 a nd U.K . 14
Disc ussio n: Our study fo und a b e lie f a mo ng so me pa tie nts tha t ACP is o nly a ppro pria te fo r tho se who a re e lde rly o r dying but inte r e stingly, Our a c tua l da ta sug g e st tha t re c e ipt o f ACP info rma tio n is no t upse tting to pa tie nts re g a rdle ss o f the ir a g e
Po te ntia l So urc e s o f Bia s: Se le c tio n b ia s So c ia l de sira b ility b ia s
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