Its Just Par t of L ife Patie nt Ac c e ptanc e of Distr - - PowerPoint PPT Presentation

“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

• 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

• utine 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

• vide 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

• 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

• r do n’ t re me mb e r: 0%*

0%*

I 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%

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?

I 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%

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?

I 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%

Wha t do yo u think a b o ut the ide a

• 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

• 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 : 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%

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?

T he g uide b o o k is info rma tive : 27%

7%

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

Ge ne ra liza b ility:

Ag e : Our pa rtic ipa nts we re o lde r tha n the

g e ne ra l po pula tio n

E

xc lusio n c rite rio n: la c k o f E ng lish flue nc y

Po pula tio n sa mple d: me dic a l inpa tie nts

Howe ve r…

Our finding s c lo se ly re plic a te d tho se o f simila r

studie s in the USA a nd the UK , whic h sug g e sts tha t the re sults a re pro b a b ly g e ne ra liza b le a c ro ss de ve lo pe d, E ng lish-spe a king c o untrie s

L imita tio ns:

T

his study did no t a tte mpt to e va lua te the e ffic a c y o f distrib uting ACP ma te ria ls in pro mo ting ACP pa rtic ipa tio n

We c a n sa y tha t the ma te ria ls a re a c c e pta b le

to pa tie nts, b ut we c a nno t sa y whe the r the y a re e ffe c tive

Stre ng ths:

I

nc lusio n o f q ua lita ta tive q ue stio ns

Re sults re plic a te d tho se fo und in o the r

jurisdic tio ns using diffe re nt ACP ma te ria ls, so the re sults a re like ly to b e g e ne ra liza b le to diffe re nt po pula tio ns a nd diffe re nt ACP ma te ria ls

Ac kno wle dg e me nts:

We a re g ra te ful to :

ma na g e me nt, nursing a nd c le ric a l sta ff o f Units

46 a nd 62 a t F

• o thills Ho spita l

pa tie nts who pa rtic ipa te d Pa tric ia Bio ndo , PhD, Re se a rc h Ma na g e r with

the ACP-CRI O pro g ra m

Alb e rta I

nno va te s- He a lth So lutio ns, who pro vide d funding fo r this pro je c t a s pa rt o f the ACP-CRI O g ra nt

Re fe re nc e s:



• 1. Sud o re RL

, F rie d T

• R. Re d e fining the ‘ pla nning ’ in a d va nc e c a re pla nning : Pre pa ring fo r

e nd -o f-life d e c isio n ma king . Ann I nte rn Me d. 2010; 153(4): 256-261.



• 2. Vig E

K , T a ylo r JS, Sta rks H, Ho ple y E K , F rye r-E d wa rd s K . Be yo nd sub stitute d jud g me nt: Ho w surro g a te s na vig a te e nd -o f-life d e c isio n-ma king . J Am Ge riatr So c . 2006; 54: 1688-1693.



• 3. Brinkma n-Sto ppe le nb urg A, Re itje ns JAC, va n d e r He id e A. T

he e ffe c ts o f a d va nc e c a re pla nning o n e nd -o f-life c a re : A syste ma tic re vie w. Palliat Me d. 2014; 28(8): 1000-1025.



• 4. Ma c k JW, We e ks JC, Wrig ht AA, Blo c k SD, Prig e rso n HG. E

nd -o f-life d isc ussio ns, g o a l a tta inme nt, a nd d istre ss a t the e nd o f life : Pre d ic to rs a nd o utc o me s o f re c e ipt o f c a re c o nsiste nt with pre fe re nc e s. J Clin Onc o l. 2010; 28(7): 1203-1208.

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• 5. T

e no JM, Grune ir A, Sc hwa rtz Z, Na nd a A, We tle T . Asso c ia tio n b e twe e n a d va nc e d ire c tive s a nd q ua lity o f e nd -o f-life c a re : A na tio na l stud y. J Am Ge riatr So c . 2007; 55:189- 194.

Re fe re nc e s:



• 6. Wrig ht AA, Zha ng B, Ra y A, e t a l. Asso c ia tio ns b e twe e n e nd-o f-life d isc ussio ns, pa tie nt

me nta l he a lth, me d ic a l c a re ne a r d e a th, a nd c a re g ive r b e re a ve me nt a d justme nt. JAMA. 2008; 300(14): 1665-1673.



• 7. Pa llia tive c a re : Suppo rt a t a ny time d uring a se rio us illne ss. Cho o sing Wise ly Ca na d a

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

• 8. He yla nd DK

, Ba rwic h D, Pic ho ra D, e t a l. F a ilure to e ng a g e ho spita lize d e ld e rly pa tie nts a nd the ir fa milie s in a d va nc e c a re pla nning . JAMA I nte rn Me d. 2013; 173(9): 778-787.



• 9. O’ Sulliva n R, Ma ilo K

, Ang e le s R, Ag a rwa l G: Ad va nc e d ire c tive s: surve y o f prima ry c a re pa tie nts. Can F am Physic ian. 61: 353-357, 2015.



• 10. Ste lte r K

L , E llio tt BA, a nd Bruno CA: L iving will c o mple tio n in o ld e r a d ults. Arc h I nte rn Me d. 1992; 152: 954-959.

Re fe re nc e s:



• 11. L
• ve ll A, Ya te s P. Adva nc e Ca re Pla nning in pa llia tive c a re : a syste ma tic lite ra ture re vie w o f

the c o nte xtua l fa c to rs influe nc ing its upta ke 2008-2012. Palliat Me d. 2014; 28(8): 1026-1035.



• 12. Yo u JJ, Do wna r J, F
• wle r RA, e t a l. Ba rrie rs to g o a ls o f c a re disc ussio ns with se rio usly ill

ho spita lize d pa tie nts a nd the ir fa milie s: a multic e nte r surve y o f c linic ia ns. JAMA I nte rn Me d. 2015; 175(4): 549-556.



• 13. Co nve rsa tio ns Ma tte r. Alb e rta He a lth Se rvic e s We b site . http:/ / g o a ls.c o nve rsa tio nsma tte r.c a /

Pub lishe d 2015. Ac c e sse d Se pte mb e r 5, 2015.



• 14. Sc hiff R, Sha w R, Ra ja N, Ra jkuma r C, Bulpitt CJ: Adva nc e e nd-o f-life he a lthc a re pla nning in

a n a c ute NHS ho spita l se tting ; de ve lo pme nt a nd e va lua tio n o f the E xpre ssio n o f He a lthc a re Pre fe re nc e s (E HP) do c ume nt. Ag e Ag e ing . 2009; 38: 81-85.



• 15. Cug lia ri AM, Mille r T

, So b a l J: F a c to rs pro mo ting c o mple tio n o f a dva nc e dire c tive s in the ho spita l. Arc h I nte rn Me d. 1995; 155: 1893-1898.