Adva nc e d I llne ss Co nve rsa tio ns Wha t Wo uld Be a Go o d - - PowerPoint PPT Presentation

Wha t Wo uld Be a Go o d Da y F

• r Yo u

E nd-o f-life Co nve rsa tio ns

Cla re Ha wkins, MD, MSc , F CF PC, F AAF P We st Re g io n Me dic a l Offic e r, Aspire He a lth 2020 T e xa s F a mily Me dic ine Sympo sium T e xa s Ac a de my o f F a mily Physic ia ns

Adva nc e d I llne ss Co nve rsa tio ns

Disc lo sure

 Dr. Ha wkins ha s disc lo se d tha t ne ithe r he no r me mb e rs o f

his imme dia te fa mily ha ve a ny a c tua l o r po te ntia l c o nflic t

• f inte re st.

Ob je c tive s

By the e nd o f this e duc a tio na l a c tivity, the le a rne r sho uld b e b e tte r a b le to :

 Re vie w princ iple s o f a dva nc e c a re pla nning  Appre c ia te the na ture o f a n e vo lving c o nve rsa tio n

• ve r multiple visits

 I

te mize stra te g ie s tha t e nha nc e e ffe c tive ne ss o f a dva nc e dire c tive disc ussio ns

5 W’ s



Why: Be c a use o f unwa nte d c a re a t e nd o f life



Who: Pe o ple with Adva nc e d I

llne sse s

 “T

he surprise q ue stio n” 

Whe n: E

a rlie r tha n yo u think a nd mo re tha n o nc e



Whe r e: Yo ur o ffic e o r ho spita l



What: Se q ue ntia l, se nsitive E

OL c o nve rsa tio ns



How:… E

a sie r tha n yo u think!

Dispro po rtio n

 90% o f pe o ple sa y tha t ta lking with the ir lo ve d o ne s a b o ut e nd-

• f-life c a re is impo rta nt. 27% ha ve a c tua lly do ne so .

 60% o f pe o ple sa y tha t ma king sure the ir fa mily is no t b urde ne d

b y to ug h de c isio ns is e xtre me ly impo rta nt.

 56% ha ve no t c o mmunic a te d the ir e nd-o f life wishe s 80% o f

pe o ple sa y tha t if se rio usly ill, the y wo uld wa nt to ta lk to the ir do c to r a b o ut wishe s fo r me dic a l tre a tme nt to wa rd the e nd o f the ir life .

 7% re po rt ha ving ha d this c o nve rsa tio n with the ir do c to r  82% o f pe o ple sa y it’ s impo rta nt to put the ir wishe s in writing .

23% ha ve a c tua lly do ne it.

Why

 Re se a rc he rs & physic ia ns a g re e tha t to o ma ny pe o ple in the

U.S. re c e ive tre a tme nts the y ne ve r wo uld ha ve wa nte d

 T

re a tme nts tha t do n’ t a lig n with the ir va lue s a s the y ne a r de a th

 Mo st wo uld pre fe r to spe nd the ir fina l da ys a t ho me ,

surro unde d b y lo ve d o ne s

 70% o f pe o ple die in ho spita ls, nursing ho me s a nd lo ng -te rm

c a re fa c ilitie s

Whe n

 Be g in we ll b e fo re a pe rso n b e c o me s ill  I

t c a n b e diffic ult fo r b o th pa tie nts a nd the ir fa milie s to think c le a rly o nc e a he a lth c risis hits

 “I

t’ s b e tte r to wo rk thro ug h e nd-o f-life issue s while pe o ple a re still a live so tha t [fa mily me mb e rs] c a n lo o k b a c k a nd fe e l tha t the y did it rig ht,” sa ys I ra Byo c k

 As pa rt o f c a ring fo r pa tie nts with a dva nc e d illne sse s

(CHF , COPD, E SL D, E SRD)

“Crysta l Ba ll” T e lling the F uture

 Humility, we ne ve r re a lly kno w  Quo te ra ng e s, da ys to we e ks, we e ks to mo nths, mo nths

to ye a rs

 But a c tua lly, we c a n b e pre tty a c c ura te with c e rta in

da ta po ints

 Clinic  Ho spita l

Optimism Bia s

 Ove re stima te s o f L

e ng th o f L ife L e ft

 1:4 Prima ry Ca re  1:10 Onc o lo g y

 I

t is ha rd fo r Do c to rs to le t g o

Christa kis NA, L a mo nt E

• B. E

xte nt a nd de te rmina nts o f e rro r in do c to rs’ pro g no se s in te rmina lly ill pa tie nts: pro spe c tive c o ho rt study. BMJ 2000;320:469-72.

Ca se 1: T ina Ja c kso n Br Ca I V

• S/ p surg e ry, ra dia tio n & two

diffe re nt type s o f c he mo the ra py

• Bo ne me ta sta se s
• L
• sing we ig ht
• Una b le to g e t a ro und
• T

ire d o f pursuing tre a tme nt

• Wa nting to fo c us o n c o mfo rt
• Wha t do yo u sa y?

Ado b e Sto c k L ic e nse 3344625

I llne ss T ra je c to ry: Ca nc e r

T ime

Dic ho to mo us Cho ic e

I nc re a sing Pa llia tive I nte rve ntio ns

T ime

“DNR o r Ho spic e ”

I OM Re po rt o n Ca nc e r 2013

 T

e a m-c a re

 Prima ry Ca re  Pa llia tive Ca re  E

a rly I ntro duc tio n o f Pa llia tive Ca re

 Ca nc e r pa tie nts who ha ve c o nve rsa tio ns a b o ut e nd-o f-life

issue s a re mo re like ly to die a t ho me o r in a c o mfo rta b le se tting , inste a d o f a ho spita l inte nsive -c a re unit

Pha sing o ut Cura tive T re a tme nt

I nc re a sing Pa llia tive I nte rve ntio ns

T ime

Ca se I I : Ro g e r

 Ro g e r is a 65 yo with a dva nc e d COPD, who yo u ha ve

se e n fo r ma ny ye a rs, a nd tre a te d with multiple inha le rs,

• xyg e n a nd a fe w ho spita liza tio ns fo r e xa c e rb a tio ns

 He ha s b e g un to lo se we ig ht a nd ha s se ve re e xe rc ise

re stric tio n in spite o f ma xima l tre a tme nt

 Ca n yo u b ring up the to pic ?  Ho w?

Ca se I I Ro g e r 65 COPD “D”

 Multiple inhale r

s, oxyge n and a fe w hospitalizations for e xac e r bations

 He has be gun to lose we ight and

has se ve r e e xe r c ise r e str ic tion in spite of maximal tr e atme nt

Can you br ing up the topic ? How?

Ado b e Sto c k L ic e nse # 64486308

I llne ss T ra je c to ry: Chro nic I llne ss Org a n F a ilure COPD o r CHF

E xa c e rb a tio n

I ntro duc ing T he T

• pic

 “Afte r lo o king a t wha t ha s b e e n g o ing o n in the pa st ye a r, I

think we sho uld ta lk a b o ut whe re this a ppe a rs to b e g o ing ”

 “Ho w do yo u fe e l a b o ut c o ntinuing to g o to the ho spita l? ”  “Whe n this ha ppe ns a g a in do yo u wa nt to g o o n a b re a thing

ma c hine ? ”

 “Sinc e we kno w tha t COPD will like ly ta ke yo ur life , ha ve yo u

tho ug ht wha t it will b e like to die ? ”

Advanc e d de me ntia and s/ p CVA with he miple gia. He r e quir e s signific ant assistanc e with daily ac tivitie s and has de c ubitus ulc e r s whic h ar e not he aling.

Ca se I I I : Ja vie r 73 Hispa nic Ma n

His BMI is 17

How c an you intr

• duc e

the topic to his wife or his c hildr e n?

Ado b e Sto c k L ic e nse # 521338815

I llne ss T ra je c to ry: Wa sting I llne sse s F ra ilty suc h a s De me ntia

Ca ta lysts

 Ho spita liza tio ns a re e ve nts whic h pro vo ke a

c o nve rsa tio n

 De c isio n po ints

 I

V a lime nta tio n

 NG o r PE

G tub e fe e ding

 Ca re g ive r b urno ut  Pre ssure wo unds whic h c a n’ t he a l

Whe re

 Ho spita l  Offic e  Ho me

Ho spita l Disc ha rg e Pro g no sis

Var iable Sc or e

Ma le se x 1 Ne e ds a ssista nc e with 1-4 ADL s a t disc ha rg e 2 Ne e ds a ssista nc e with a ll ADL s 5 Co ng e stive He a rt F a ilure 2 Ca nc e r 3 Me ta sta tic Ca nc e r 8 Cre a tinine 3.5 g / dl 2 Se rum a lb umin > 3 g / dL 1 Se rum a lb umin < 3 g / L 2

Va lida tio n c o ho rt fro m Wa lte r & c o lle a g ue s # 16, F ro m Yo u CMAJ 2014

Ho spita l Disc ha rg e Pro g no sis

T

• tal Sc or

e 1-ye ar mor tality, %

0-1 po ints 4 2-3 po ints 19 4-6 po ints 34 >6 po ints 64

JAMA Oc to b e r 8, 20008

ACP Billing Co de s 99497 a nd 99498



F a c e -to -fa c e se rvic e b e twe e n a physic ia n o r o the r q ua lifie d he a lthc a re pro fe ssio na l (QHP) a nd a pa tie nt, fa mily me mb e r o r surro g a te in c o unse ling a nd disc ussing a dva nc e dire c tive s, with or

without c o mple ting re le va nt le g a l fo rms



Re q uire s a fa c e -to -fa c e visit, ho we ve r, the pa tie nt ma y no t b e pre se nt

 He a lth Ca re Pro xy,  Dura b le po we r o f a tto rne y fo r he a lthc a re ,  L

iving will

 OOHDNR



30 minute s

Ho w

 L

iste n

 Ask the ir unde rsta nding a nd b uild o n it  Sta rt with MPOA a s mo st impo rta nt / e a sie st do c ume nt  Do n’ t dwe ll o n CPR/ no CPR b ut ra the r o n the ir g o a ls o f

wha t the y wo uld do in the la st we e ks o r mo nths o f life ,

 “Wha t wo uld b e a g o o d da y fo r yo u? ”

SPI K E S Pro to c o l fo r De live ring Ba d Ne ws

Se tting o f the inte rvie w

 Arra ng e fo r so me priva c y  Ask who sho uld b e pre se nt  Co nside r inc luding a c o lle a g ue  Sit do wn a nd ma ke e ye c o nta c t

Pe r c e ption o f the pa tie nt

 “Wha t do yo u kno w a b o ut yo ur illne ss”

 “Wha t ha s b e e n g o ing o n with yo ur he a lth o ve r the la st ye a r”

SPI K E S Pro to c o l fo r De live ring Ba d Ne ws

Invitation fro m the pa tie nt

 De te rmine wha t the pa tie nt wa nts to kno w  “Do yo u wa nt me to e xpla in a ll the de ta ils o f yo ur c o nditio n? ”

Knowle dge T

ra nsfe r  Use simple la ng ua g e , a nd sma ll a mo unts o f info rma tio n, c he c king

fo r unde rsta nding (a llo wing pa tie nts a nd fa mily to ta lk)

 Ac kno wle dg e unc e rta inty in pro g no sis g iving ra ng e s no t e xa c t

numb e rs

SPI K E S Pro to c o l fo r De live ring Ba d Ne ws

E motions: Addre ssing fe e ling s with e mpa thy

 “I

t is OK to fe e l sa d”, “this must b e upse tting ”

 “yo u ha ve b e e n g o ing thro ug h a lo t”  “yo u must b e tire d” we c a n ta ke o ur time ”  Use sile nc e , a nd sho rt phra se s to dra w o ut unde rsta nding a nd fe e ling , “te ll me

mo re ” o r “wha t wo rrie s yo u the mo st”

Str ate gy & Summation

 Summa rize a nd c o nside r “te a c h b a c k”  Ma ke a pla n fo r a fo llo w-up me e ting

Ca se I V: Ge o rg e 73, E SL D He p C

Ho w wo uld yo u c o nduc t a fa mily me e ting ? Cirrho sis a nd a sc ite s, a nd a ltho ug h no w a lc o ho l a b stine nt, o fte n tire d, a nd fre q ue ntly e nc e pha lo pa thy b ut whe n a le rt he indic a te s he wo uld like his fa mily to “le t g o ”

Ado b e Sto c k L ic e nse # 64860217

F a mily Me e ting



We lc o me e ve ryo ne pre se nt a nd a c kno wle dg e the g ra vity o f the situa tio n



Ha ve pa tie nt pre se nt, o r if no t a b le to b e pre se nt c o nside r a n e mpty c ha ir



Ask who is the spo ke spe rso n (o r the MPOA)



Allo w the m to e xpla in wha t the y unde rsta nd a nd wha t the ir q ue stio ns



Whe n the re is e mo tio n, a llo w sile nc e , a nd a lso ma ke b rie f c o mme nts to dra w o ut mo re tho ug hts a nd fe e ling s



Re me mb e r to b ring it b a c k to wha t Ge o rg e wo uld sa y.

E ffe c tive I nte ra c tio ns

 Allo wing pa tie nts to spe a k mo re tha n 50% o f the

c o nve rsa tio n is a sso c ia te d with supe rio r pa tie nt sa tisfa c tio n

 Va lue o f Sile nc e  MPOA “Pre sc riptio n”

 Assist the m in putting the ir wife , so n, da ug hte r e tc . in the Pro xy

line a nd the n ha ve the m g o ho me a nd ha ve the c o nve rsa tio n

Sub stitute De c isio n Ma ke rs



Me dic a l Po we r o f Atto rne ys



Pro xie s



Spo use ? , Childre n?



Ma y no t kno w the pa tie nt’ s wishe s



Ofte n ha ve a c o nflic t b e twe e n ho no ring the ir wishe s a nd the ir o wn sta g e o f g rie f a nd lo ss



A g o o d fa mily c o nve rsa tio n prio r to a dva nc e d illne ss o r inc a pa c ity ma y re duc e g uilty fe e ling s



Disc ussio ns b e twe e n pa tie nts a nd the ir sub stitute de c isio n- ma ke rs a b o ut a dva nc e c a re pla nning a re a sso c ia te d with hig he r le ve ls o f a g re e me nt

Surro g a te De c isio n Ma ke r

 “Yo u a re no t ma king the de c isio n to sto p, b ut a re

a c tua lly re pre se nting tha t tha t is wha t he wo uld ha ve sa id if he c o uld spe a k fo r himse lf”

 Sho uldn’ t b e yo ur va lue s b ut the irs  Do n’ t le t yo ur g rie f g e t in the wa y

DNR, DNI

• r F

UL L CODE

 T

ra ditio na l disc ussio ns fo c us o n e luc ida ting the se c ho ic e s

• r c he c kb o xe s

 Ma y no t b e the b e st wa y to sta rt a disc ussio n  Me dia Po rtra ya ls o f CPR c re a te ina ppro pria te o ptimism

CPR & I n-Ho spita l Mo rta lity

 Ove ra ll in-ho spita l surviva l a fte r CPR is a b o ut 15%–20%

(V fib o r pulse le ss V ta c h)

 Witho ut a sho c ka b le rhythm (a systo le , PE

A), surviva l de c re a se s to a b o ut 10% (1 in 10 pa tie nts)

 I

CU pa tie nts with multiple illne sse s b e twe e n 1% a nd 5% (1: 20-100)

 I

f re susc ita te d, ma ny will ha ve diminishe d func tio n, 30- 70% una b le to re turn ho me

CPR De c isio n Aid

www.the c a re ne t.c a / do c s/ CPRDe c isio n_Aid_fo rma tte d _20101110.pdf

• 5 pa tie nts will survive o ut o f

e ve ry 100 pa tie nts who ha ve CPR whe n the ir he a rt sto ps

• Ab o ut 95 pe o ple who

re c e ive CPR die

• Of the 5 who survive 2 will

ha ve se rio us b ra in injurie s

Me dic a l L e a de rship

 No t ma king de c isio ns fo r pa tie nts (Pa te rna lism)  Ac kno wle dg ing the physic ia n-e xpe rt ro le  No t b e ing va lue -ne utra l o r e xc e ssive ly o b je c tive a s if a ll

a lte rna tive s a re e q ua l

 Pro vide No rma lizing Sta te me nts

 “Ma ny pe o ple in yo ur situa tio n c ho o se the fo llo wing …”

 Ca utio us use o f se lf disc lo sure

L e a de rship Sta te me nts

 “I

think it is time .”

 “I

se e tha t thing s a re no t g e tting b e tte r.”

 “Be c a use o f his c urre nt b ra in c o nditio n, it is sa fe to sa y he

wo n’ t c o me b a c k to wha t he wa s”

 “We ha d c o nve rsa tio ns in my o ffic e a nd she wo uldn’ t

ha ve wa nte d this”

Alig ning L a ng ua g e

 Shar

e d de c ision-making: “Base d o n what yo u’ve said, it se e ms to

me that the mo st re aso nable c o urse o f ac tio n is ...”

 (i.e ., avoid asking “What would you like us to do?” to a vo id pla c ing the

b urde n o f the de c isio n so le ly o n the pa tie nt).  Ac tive de c ision-make r: “I

t is up to yo u to de c ide , but many pe o ple in yo ur c irc umstanc e s wo uld c o nside r it ac c e ptable to ...” (i.e .,

le g itimize the diffic ult o ptio n, b ut le a ve the pa tie nt a s the fina l de c isio n-ma ke r).

 Passive de c ision-make r: “I

re c o mme nd tha t we do the fo llo wing ...” (i.e ., de c la re the pla n).

E luc ida te Va lue s

 “H

ave yo u pre vio usly had an e xpe rie nc e with se rio us illne ss, o r has so me o ne c lo se to yo u had an e xpe rie nc e with se rio us illne ss o r de ath? ”

 “I

f yo u we re in this situatio n (again), what wo uld yo u ho pe fo r? What wo uld wo rry yo u mo st? ”

 “Did this situatio n make yo u think abo ut state s o f be ing that wo uld

be so unac c e ptable to yo u that yo u wo uld c o nside r the m to be wo rse than de ath? ”

Re de fining the “pla nning ” in a dva nc e c a re pla nning : pre pa ring fo r e nd-o f-life de c isio n ma king . Ann I nte rn Me d 2010;153:256-61.

Ca se V: L inda T he Da ug hte r fro m

• ut o f to wn

 Yo u ha ve b e e n c a ring fo r a pa tie nt

witho ut a MPOA, b ut who ha s a c a ring fa mily who ha s b e e n with the m thro ug h de c lining he a lth, tra nsitio ns in c a re g ive rs, a nd fre q ue nt ho spita liza tio n.

 A c o nse nsus is a ppro a c hing to sto p

g iving tra nsfusio ns fo r b o ne ma rro w fa ilure

 T

he n a fa mily me mb e r who ha s no t b e e n pa rt o f the disc ussio ns a rrive s a nd wa nts “e ve rything do ne ”

He lping He r Ca tc h Up

 Why do e s she wa nt e ve rything

do ne ?

 He r o wn g rie f pro c e ss?  Unre so lve d re la tio na l issue s?  F

a mily Dyna mic s?

 Guilt o ve r ha ving b e e n a wa y?

 Co nside r a ssista nc e with the

c o nve rsa tio n

 Cha pla in, SW, Ho spic e

I nfo rma tio na l Visit

Co nflic ts

E vo lving Co nve rsa tio n

 Build o n trust a nd ra ppo rt  Pha se d a ppro a c h, with initia l intro duc tio n a nd pro b ing o f

this issue e a rly during the sta y in ho spita l a nd mo re de ta ile d fo llo w-up la te r o n

 I

c e Bre a ke r:

 I

’ m wo rrie d a b o ut yo u  Ca re ful use o f Sile nc e

Re so urc e s



http:/ / www.a dva nc e c a re pla nning .c a



www.e pro g no sis.o rg



http:/ / the c o nve rsa tio npro je c t.o rg , I HI & Ca mb ia He a lth



http:/ / www.fa milydo c s.o rg / e o l



F ive Wishe s



Ha rva rd Vide o s



Ne tflix “E xtre mis”