,,ii  #aac? ,,congress  #b;d ,session   
,s4 #bhjj  ,,9 ,,! ,,s5ate ,,( ,,!      
,,unit$ ,,/ates  ,septemb] #aa1         
#bjad,mr4 ,begi* 7= himself & ,mr4 ,k+7 
introduc$ ! foll[+ bill2 :i* 0 read     
twice & ref]r$ to ! ,committee on       
,heal?1 ,education1 ,labor1 & ,p5sions  
,a ,,bill  ,to create a pati5t-c5t]$    
quality ( c>e initiative = s]i\sly ill  
pati5ts ?r\gh ! e/abli%m5t ( a /akehold]
 /rategic summit1 quality ( life        
education & aw>5ess initiative1 heal?   
c>e work=ce tra9+1 an advisory          
committee1 & palliative c>e focus$      
rese>*1 & = o!r purposes4  #a4 ,%ort    
title ,?is ,act may be cit$ z ! ,pati5t 
,c5t]$ ,quality ,c>e = ,life ,act4  #b4 
,f9d+s ,congress f9ds ! foll[+3 7#a7    
,/udies demon/rate t1 despite v high    
heal? exp5ditures1 s]i\sly ill pati5ts  
are n satisfi$ ) ! quality ( _! m$ical  
c>e1 *>act]iz$ by untreat$ symptoms1    
unmet psy*osocial & p]sonal c>e ne$s1   
high c>egiv] burd51 & l[ pati5t & family
 satisfaction4  7#b7 ,heal? c>e deliv]y 

sy/ems 9 ! ,unit$ ,/ates are n set up to
 address ! complex *ronic c>e ne$s t are
 increas+ly becom+ ! norm = m pati5ts & 
survivors 7& family c>egiv]s ( su*      
pati5ts & survivors7 fac+ s]i\s illness 
l canc]2 he>t1 r5al & liv] failure2 lung
 disease2 ,alzheim]'s disease & relat$  
dem5tias1 :i* are c>e ne$s t c span ov] 
_m ye>s or ev5 decades & impose         
significant burd5s on family c>egiv]s4  
7#c7 ,public outrea* & education =      
s]i\sly ill pati5ts1 survivors1 & _!    
families to improve aw>5ess ( & dem& = !
 b5efits ( integrat+ symptom managem5t  
alongside disease-direct$ treatm5t is   
ess5tial to improv+ ! quality ( life (  
pati5ts1 survivors1 & _! families1 :i*  
%\ld be an integral elem5t ( quality    
heal? c>e4  7#d7 ,palliative c>e is     
specializ$ m$ical c>e = s]i\sly ill     
pati5ts4 ,?is type ( c>e is focus$ on   
provid+ pati5ts ) relief f ! symptoms1  
pa91 & /resses ( a s]i\s illness--:atev]
 ! diagnosis4 ,! goal is to improve     
quality ( life = bo? ! pati5t & !       

family4 ,palliative c>e is provid$ by a 
team ( doctors1 nurses1 & o!r speciali/s
 :o "w ) a pati5t's o!r doctors to      
provide an extra lay] ( support4        
,palliative c>e is appropriate at any   
age & at any /age 9 a s]i\s illness1 & c
 be provid$ toge!r ) curative treatm5t4 
7#e7 ,m$ical teams t help pati5ts manage
 pa9 & /ress dur+1 alongside1 & aft]    
treatm5t provide pati5ts ) bett] quality
 ( life4 ,evid5ce-bas$ rese>* %[s t su* 
c>e may also lead to increas$ survival4 
,^! teams also r$uce prev5table suff]+ &
 c>egiv] breakd[n4  7#f7 ,pati5ts       
receiv+ palliative or coord9at$ c>e feel
 bett] & are m likely to keep _!        
doctor's appo9tm5ts1 complete _!        
treatm5t1 & take _! m$ications4 ,if     
pati5t disease-relat$ & treatm5t-relat$ 
symptoms su* z pa91 nausea1 depression1 
fatigue1 & brea?lessness are manag$1    
pati5ts are m likely to eat well1       
ex]cise1 socialize1 & take pleasure 9   
?+s t c help !m feel bett] emotionally &
 physically & help !m fight *ronic      

illness4  7#g7 ,a #bjaj ,h>ris          
,int]active poll commission$ by !       
,am]ican ,canc] ,society ,canc] ,action 
,network 7,,acscan7 among canc] pati5ts1
 survivors1 & _! family c>egiv]s f\nd t 
few] ?an "o-?ird ( ! pati5ts & survivors
 7 ask$ by _! doctor ab\t :at is        
important to su* pati5ts & survivors 9  
t]ms ( quality ( life4 ,9 t same poll1  
few] ?an "o-?ird ( ! pati5ts & survivors
 7 ask$ if !y 7 hav+ /ress1 depression1 
anxiety1 or o!r emotional conc]ns relat$
 to ! canc] or discuss$ ways to help )  
^? emotional effects1 ?\gh m ?an "o-?ird
 ( su* pati5ts & survivors said !y _h ^!
 emotional conc]ns4  7#h7 ,a report     
commission$ by ! ,heal? ,res\rces       
,s]vice ,adm9i/ration 7,,hrsa7 9 #bjjb  
project$ significant %ortfalls 9 ! numb]
 ( palliative m$ic9e speciali/s 9 !     
,unit$ ,/ates & call$ = increas$        
education & tra9+ 9 symptom assessm5t & 
managem5t & o!r palliative c>e core     
compet5cies across all cl9ical          
specialties s]v+ s]i\sly ill pati5ts4   

,sev]al ,in/itute ( ,m$ic9e canc]       
reports1 includ+ on palliative c>e 9    
#bjja1 survivor%ip 9 #bjjf1 psy*osocial 
c>e 9 #bjjg1 & pa9 9 #bjaa h also       
consi/5tly signal$ ! ne$ = skills tra9+ 
to improve heal? pr(essional            
communication ) pati5ts & families      
reg>d+ symptoms1 e/abli%+ goals ( c>e1  
tailor+ treatm5ts to ^? goals1 & o!r    
quality ( life conc]ns4  #c4 ,national  
pati5t-c5t]$ heal? c>e & quality ( life 
/akehold] /rategic summit  7a7 ,summit  
,n lat] ?an "o ye> aft] ! date ( !      
enactm5t ( ?is section1 ! ,secret>y (   
,heal? & ,human ,s]vices %all conv5e a  
,pati5t-,c5t]$ ,heal? ,c>e & ,quality ( 
,life ,/akehold] ,/rategic ,summit 79   
?is ,act to be ref]r$ to z ! ,summit7 to
 be compos$ ( individuals ) appropriate 
exp]tise to-- 7#a7 analyze key heal?    
sy/em b>ri]s to provid+ pati5t-c5t]$    
heal? c>e t integrates symptom managem5t
 & o!r aspects ( coord9at$ or palliative
 c>e2 &  7#b7 id5tify /rategic solutions
 = collectively address+ quality ( life 

conc]ns = ! rapidly exp&+ population (  
pati5ts & survivors fac+ s]i\s1 complex1
 & *ronic illness 9 ! ,unit$ ,/ates & = 
! families ( su* pati5ts & survivors4   
7b7 ,p>ticipants ,! ,summit %all include
 repres5tatives f at lea/ ! foll[+3 7#a7
 ,f$]al ag5cies1 includ+-- 7,a7 !       
,dep>tm5t ( ,heal? & ,human ,s]vices1   
includ+ f ! ,c5t]s = ,disease ,control &
 ,prev5tion1 ! ,heal? ,res\rces &       
,s]vices ,adm9i/ration1 ! ,ag5cy =      
,heal?c>e ,rese>* & ,quality1 ! ,c5t]s =
 ,m$ic>e  ,m$icaid ,s]vices1 & !        
,national ,in/itutes ( ,heal?2  7,b7 !  
,dep>tm5t ( ,vet]ans ,affairs2 &  7,c7 !
 ,dep>tm5t ( ,def5se4  7#b7 ,private    
organizations1 includ+-- 7,a7 heal?     
pr(essional organizations t repres5t    
physicians1 nurses1 ph>maci/s1 & social 
work]s2  7,b7 pati5t non-pr(it          
organizations 7z def9$ 9 section        
#d7;g772  7,c7 private heal? insurance  
organizations2  7,d7 fai? community     
repres5tatives2 &  7,e7 o!r pr(essionals
 z deem$ appropriate by ! ,secret>y4    

7c7 ,/e]+ ,committee  7#a7 ,9 g5]al ,!  
,secret>y %all e/abli% a ,summit ,/e]+  
,committee to plan ! ,summit1 coord9ate 
p>ticipants ( ! ,summit1 develop an     
ag5da = ! ,summit t is 9 accordance )   
subsection 7d71 & draft a summ>y report 
detail+ recomm5dations made by !        
p>ticipants ( ! ,summit = a national    
/rategic action ag5da to improve        
pati5t-c5t]$ c>e & quality ( life 79 ?is
 ,act to be ref]r$ to z ! ,national     
,action ,ag5da7 9 accordance )          
subsection 7d77#d74 ,! ,secret>y %all   
appo9t ! repres5tatives describ$ 9      
p>agraph 7#b77;,a7 & %all seek          
nom9ations f relevant /akehold]s &1 f   
su* nom9ations1 appo9t repres5tatives   
describ$ 9 p>agraph 7#b77;,b74  7#b7    
,composition ,! ,summit ,/e]+ ,committee
 %all consi/ ( at lea/ ! foll[+ memb]s3 
7,a7 ,memb]s f ,f$]al ag5cies  7i7 ,!   
,secret>y1 :o w s]ve z *air ( !         
,committee4  7ii7 ,f\r repres5tatives f 
,f$]al ag5cies describ$ 9 subsection 7b7
 7or any o!r ,f$]al ag5cy deem$         

appropriate by ! ,secret>y71 to be      
appo9t$ by ! ,secret>y4  7,b7 ,memb]s   
repres5t+ /akehold] entities  7i7 ,six  
repres5tatives ( heal? pr(essionals 7)  
ea* ( su* #f repres5tatives hav+ rese>*1
 cl9ical1 & tea*+ or m5tor+ exp]tise74  
7ii7 ,?ree repres5tatives ( pati5t      
advocacy organizations4  7iii7 ,"o      
repres5tative ( a private heal?         
insurance organization4  7iv7 ,"o       
repres5tative ( fai? communities4  7v7  
,two physicians4  7vi7 ,two nurses4     
7vii7 ,"o social work]4  7d7 ,ag5da ,!  
ag5da = ! ,summit %all focus on specific
 areas t include at lea/ ! foll[+3 7#a7 
,improv+ communication & coord9ation (  
heal? c>e among prim>y c>e provid]s1    
m$ical speciali/s1 & o!r heal?          
pr(essionals & s]i\sly ill pati5ts &    
families ( su* pati5ts to ensure t      
symptoms are manag$ & o!r quality ( life
 ne$s are met to support ! cont9u$      
function+ & well-be+ ( su* pati5ts4     
7#b7 ,exam9+ ! appropriate roles ( bo?  
physician & non-physician pr(essionals  

7su* z nurse practition]s1 cl9ical      
social work]s1 physician assi/ants1 &   
o!r pati5t or survivor navigators or    
case coord9ators7 9 /r5g!n+ access to   
integrat$1 coord9at$1 or palliative c>e 
across c>e sett+s = all s]i\sly ill     
pati5ts & families ( su* pati5ts4  7#c7 
,exam9+ ! role ( heal? in=mation        
te*nology 9 promot+ deliv]y ( integrat$ 
c>e to su* pati5ts4  7#d7 ,develop+     
recomm5dations = a ,national ,action    
,ag5da1 :i* %all specify rese>*1        
surveillance1 heal? in=mation te*nology1
 work=ce tra9+1 deliv]y ( c>e1 &        
communication activities requir$ to     
collectively address b>ri]s to a*iev+   
integrat$ palliative c>e = s]i\sly ill  
pati5ts 9 all c>e sett+s4 ,su* ag5da    
%all include /rategies = r$uc+          
disp>ities among m$ically und]s]v$      
populations4  7e7 ,report ,n lat] ?an "o
 ye> aft] ! la/ day ( ! ,summit1 !      
,secret>y ( ,heal? & ,human ,s]vices    
%all submit to ! ,committee on ,en]gy & 
,comm]ce ( ! ,h\se ( ,repres5tatives & !

 ,committee on ,heal?1 ,education1      
,labor1 & ,p5sions ( ! ,s5ate a report  
on ! recomm5dations made by !           
p>ticipants ( ! ,summit & %all make su* 
recomm5dations available to ! public4   
7f7 ,s]i\sly ill pati5t def9$ ,=        
purposes ( ?is ,act1 ! t]m s]i\sly ill  
pati5t means an individual :o has a     
s]i\s heal? condition 7z def9$ 9 section
 #aja7aa7 ( ! ,family & ,m$ical ,leave  
,act ( #aiic 7#bf ,u4,s4,c4 #biaa7aa7774
  7g7 ,au?orization ( appropriations    
,!re is au?oriz$ to be appropriat$ to   
c>ry out ?is section su* sums z are     
necess>y = ea* ( ! fiscal ye>s #bjad    
?r\gh #bjah4  #d4 ,quality ( life pati5t
 & pr(essional aw>5ess grants program   
initiative ,title ,,iii ( ! ,public     
,heal? ,s]vice ,act 7#db ,u4,s4,c4 #bda 
et seq47 is am5d$ by add+ at ! end !    
foll[+ new "p3  ,w ,programs ,relat+ to 
,palliative ,c>e  #cii,,oo4 ,quality (  
life pati5t & pr(essional aw>5ess grants
 program initiative  7a7 ,9 g5]al ,n    
lat] ?an #f mon?s aft] ! date ( !       

submission ( ! report by !              
,pati5t-,c5t]$ ,heal? ,c>e & ,quality ( 
,life ,/akehold] ,/rategic ,summit "u   
section #c7;e7 ( ! ,pati5t ,c5t]$       
,quality ,c>e = ,life ,act1 ! ,secret>y1
 ?r\gh ! ,director ( ! ,c5t]s = ,disease
 ,control & ,prev5tion1 %all e/abli% a  
national quality ( life education &     
aw>5ess grants program initiative =     
s]i\sly ill pati5ts1 families ( su*     
pati5ts1 & heal? pr(essionals :o treat  
su* pati5ts = ! purposes ( enc\rag+ an  
increas$ dem& = & deliv]y ( integrat$ & 
pati5t-c5t]$ c>e = manag+ pa9 & symptoms
 ( su* pati5ts & improv+ ! quality (    
life ( su* pati5ts4 ,"u ! initiative1 ! 
,secret>y %all1 subject to subsection   
7h71 aw>d competitive grants to eligible
 entities describ$ 9 subsection 7b7 to  
develop new & exp& exi/+ in=mation1     
res\rces1 & communication mat]ials ab\t 
symptom managem5t & o!r aspects (       
pati5t-c5t]$ c>e z an integral "p (     
quality c>e = s]i\s illnesses su* z     
canc]2 he>t1 r5al & liv] failure2 lung  

disease2 & ,alzheim]'s disease & relat$ 
dem5tias4 ,su* mat]ials %all be pres5t$ 
9 a v>iety ( =mats 7su* z onl9e1 pr9t1 &
 public s]vice ann\ncem5t74  7b7        
,eligible entities ,= purposes ( ?is    
section1 an eligible entity includes    
only a ,/ate heal? dep>tm5t1 community  
heal? c5t]1 ,/ate or t]ritory program   
support$ by ! ,national ,compreh5sive   
,canc] ,control ,program ( ! ,c5t]s =   
,disease ,control & ,prev5tion1 heal?   
pr(ession s*ool1 *ronic disease or canc]
 c5t]1 academic m$ical c5t]1 physician  
practice1 home heal? c>e ag5cy1         
palliative c>e or psy*osocial c>e team  
7z def9$ 9 subsection 7g771 hospice     
program1 pati5t non-pr(it organization  
7z def9$ 9 subsection 7g771 cl9ical     
pa/oral education program1 long-t]m c>e 
facility1 fai? community organization1  
or o!r public or private entity or      
organization address+ pati5t-c5t]$ c>e &
 quality ( life conc]ns ( s]i\sly ill   
pati5ts4  7c7 ,application ,to be       
eligible to receive a grant "u ?is      

section1 an entity %all submit to !     
,secret>y an application at su* "t1 9   
su* mann]1 & conta9+ su* in=mation z !  
,director may require1 includ+          
assurances t ! entity w-- 7#a7 evaluate 
programs c>ri$ out by ! entity ?r\gh a  
grant provid$ "u ?is section2  7#b7     
submit to ! ,secret>y a report on !     
f9d+s ( su* evaluations2 &  7#c7        
coord9ate ! dissem9ation ( su* f9d+s ) !
 ,secret>y4  7d7 ,use ( funds ,an entity
 aw>d$ a grant "u ?is section %all use  
su* grant to c>ry out programs describ$ 
9 subsection 7e71 = pati5ts & families (
 su* pati5ts t fur!r ! purposes describ$
 9 subsection 7a74  7e7 ,programs       
,programs describ$ 9 ?is subsection1 =  
:i* a grant aw>d$ "u ?is section may be 
us$1 include programs to-- 7#a7 navigate
 ! heal? sy/em1 includ+ assi/ance to    
pati5ts ) f9d+ heal? pr(essionals to    
support quality ( life ne$s1 c>e        
decisionmak+ & coord9ation1 &           
transitions across c>e sett+s2  7#b7    
provide g5]al advocacy on behalf (      

pati5ts & survivors to provide pati5ts  
in=mation to help !m effectively        
communicate ) heal? c>e provid]s ab\t   
pa91 physical & psy*osocial symptoms1 & 
b>ri]s !y are fac+ 9 adh]+ to curative  
or disease-direct$ treatm5ts2  7#c7     
enc\rage heal? pr(essionals to reque/   
coord9at$ pati5t-c5t]$ c>e consults =   
pati5ts t are integrat$ alongside       
disease direct$ treatm5t 9 v>i\s c>e    
sett+s2 &  7#d7 collect & analyze data  
relat$ to ! effectiv5ess ( ! initiative 
"u subsection 7a74  7f7 ,priority ,9    
c>ry+ out ! grant program "u ?is        
section1 ! ,secret>y %all give priority 
to applications t include an emphasis on
 address+ outrea* ef=ts = s]i\sly ill   
pati5ts :o are among m$ically und]s]v$  
populations 7z def9$ 9 section #acjb7g77
 & families ( su* pati5ts or heal?      
pr(essionals s]v+ m$ically und]s]v$     
populations4 ,su* populations w\ld      
include p$iatric pati5ts1 "y adult &    
adolesc5t pati5ts1 racial & e?nic       
m9ority populations1 & o!r priority     

populations specifi$ by ! ,secret>y4    
7g7 ,def9itions ,= purposes ( ?is       
section3 7#a7 ,psy*osocial c>e team ,!  
t]m psy*osocial c>e team means heal?    
pr(essionals focus$ on address+ social &
 emotional conc]ns ( s]i\s illness1 &   
may include pr(essionals su* z social   
work]s1 psy*iatri/s1 psy*ologi/s1       
nurses1 *ild life speciali/s1 tea*]s1   
*apla9s1 spiritual c\nselors1 physical &
 occupational !rapi/s1 nutritioni/s1    
integrative m$ic9e speciali/s1 pati5t   
s]vice coord9ators1 pati5t navigators1 &
 pati5t repres5tatives4  7#b7 ,pati5t   
non-pr(it organization ,! t]m pati5t    
non-pr(it organization means a nonpr(it 
entity prim>ily engag$ 9 rais+ funds =  
heal?-relat$ rese>*1 su* z disease      
prev5tion1 heal? education1 & pati5t    
s]vices4  7h7 ,au?orization (           
appropriations ,!re is au?oriz$ to be   
appropriat$ to c>ry out ?is section su* 
sums z are necess>y4  4  #e4            
,pr(essional work=ce tra9+ grants       
program initiative ,"p ,w ( title ,,iii 

( ! ,public ,heal? ,s]vice ,act1 z add$ 
by section #d1 is am5d$ by add+ at ! end
 ! foll[+ new section3  #cii,,oo-#a4    
,pr(essional work=ce tra9+ grants       
program initiative  7a7 ,initiative     
7#a7 ,9 g5]al ,n lat] ?an #f mon?s aft] 
! date ( ! submission ( ! report by !   
,pati5t-,c5t]$ ,heal? ,c>e & ,quality ( 
,life ,/akehold] ,/rategic ,summit "u   
section #c7;e7 ( ! ,pati5t ,c5t]$       
,quality ,c>e = ,life ,act1 ! ,secret>y1
 ?r\gh ! ,adm9i/rator ( ! ,heal?        
,res\rces & ,s]vices ,adm9i/ration1 %all
 e/abli% a heal? c>e pr(essional work=ce
 tra9+ grants program initiative = !    
purposes ( promot+ & enhanc+ symptom    
assessm5t & managem5t1 communications   
skills1 coord9at$ pati5t-c5t]$ c>e1 &   
o!r quality ( life focus$ cl9ical core  
compet5cies 7z describ$ 9 p>agraph 7#b77
 across all cl9ical specialties t s]ve  
s]i\sly ill pati5ts & pati5ts ) multiple
 or complex *ronic diseases1 su* z      
pati5ts ) canc]2 he>t1 r5al1 & liv]     
failure2 lung disease2 & ,alzheim]'s    

disease & relat$ dem5tias4 ,"u su*      
initiative1 ! ,secret>y %all1 subject to
 subsection 7i71 aw>d competitive grants
 to eligible entities to provide        
evid5ce-bas$ tra9+ & develop new tra9+ =
 heal? pr(essionals1 includ+ physicians1
 nurses1 social work]s1 & pr(essional   
*apla9s = ! purposes describ$ 9 !       
previ\s s5t5ce4  7#b7 ,quality ( life   
focus$ cl9ical core compet5cies describ$
 ,= purposes ( p>agraph 7#a71 quality ( 
life focus$ cl9ical core compet5cies    
include1 at a m9imum1 ! assessm5t &     
managem5t ( physical1 psy*ological1 &   
spiritual symptoms2 e/abli%m5t (        
pati5t-c5t]$ goals ( c>e2 support to    
pati5t & family c>egiv]s2 & managem5t ( 
transitions across c>e sites4  7b7      
,eligible entities ,= purposes (        
subsection 7a71 an eligible entity is an
 entity describ$ 9 section #cii,,oo7b74 
7c7 ,application ,to be eligible to     
receive a grant "u ?is section1 an      
entity %all submit to ! ,secret>y an    
application at su* "t1 9 su* mann]1 &   

conta9+ su* in=mation z ! ,secret>y may 
require1 includ+ assurances t ! entity  
w-- 7#a7 evaluate programs c>ri$ out by 
! entity ?r\gh ! grant provid$ "u ?is   
section2  7#b7 submit to ! ,secret>y a  
report on ! f9d+s ( su* evaluations2 &  
7#c7 coord9ate ! dissem9ation ( su*     
f9d+s ) ! ,secret>y4  7d7 ,use ( funds  
,an entity aw>d$ a grant "u ?is section 
%all use su* grant to c>ry out programs 
describ$ 9 subsection 7e7 to tra9 heal? 
c>e pr(essionals describ$ 9 subsection  
7a77#a7 = ! purposes describ$ 9 su*     
subsection4  7e7 ,programs ,programs    
describ$ 9 ?is subsection1 = :i* a grant
 aw>d$ "u ?is section may be us$1       
include programs to-- 7#a7 enhance heal?
 pr(essional communication skills 9 c>+ 
= s]i\sly ill pati5ts & survivors1      
e/abli%+ goals ( c>e1 & tailor+         
treatm5ts2  7#b7 improve heal? pr(ession
 id5tification ( pati5t populations t   
b5efit f coord9at$ palliative c>e &     
appropriate ref]ral ( pati5ts =         
consultations ) specializ$              

int]discipl9>y palliative c>e teams2    
7#c7 improve heal? pr(essional skills 9 
symptoms assessm5t & managem5t1 develop+
 compreh5sive c>e coord9ation & dis*>ge 
plans to support transitions across c>e 
sett+s1 manag+ pati5ts ) complex or     
multiple *ronic conditions1 & prep>+    
survivor%ip c>e plans2  7#d7 promote    
quality ( life focus$ cl9ical core      
compet5cies 7z describ$ 9 subsection    
7a77#b77 across all cl9ical specialties 
s]v+ s]i\sly ill pati5ts2  7#e7 provide 
te*nical assi/ance to hospitals & o!r   
c>e sett+s to e/abli% coord9at$         
palliative c>e teams2  7#f7 create &    
exp& coord9at$ palliative c>e lead]%ip  
c5t]s 7z def9$ 9 subsection 7h772  7#g7 
provide m5tor+ & tra9+ to heal?         
pr(essionals2  7#h7 improve cultural    
s5sitivity communication & pati5t c>e = 
m9ority & m$ically und]s]v$ populations1
 includ+ by address+ ! p>ticul> ne$s (  
*ildr51 adolesc5ts1 & families ( su*    
*ildr5 & adolesc5ts2 racial & e?nic     
gr\ps2 & o!r m$ically und]s]v$ pati5t & 

survivor populations2 &  7#i7 collect & 
analyze data relat$ to ! effectiv5ess ( 
heal? pr(essional education & tra9+     
ef=ts c>ri$ out pursuant to ?is section4
  7f7 ,priority ,9 c>ry+ out ! grant    
program "u ?is section1 ! ,secret>y %all
 give priority to applications t include
 an emphasis on address+ outrea* ef=ts =
 s]i\sly ill pati5ts :o are among       
m$ically und]s]v$ populations 7z def9$ 9
 section #acjb7g77 & families ( su*     
pati5ts or heal? pr(essionals s]v+      
m$ically und]s]v$ populations4 ,su*     
populations w\ld include p$iatric       
pati5ts1 "y adult & adolesc5t pati5ts1  
racial & e?nic m9ority populations1 &   
o!r priority populations specifi$ by !  
,secret>y4  7g7 ,/udy ,n lat] ?an "o ye>
 aft] ! date ( ! enactm5t ( ! ,pati5t   
,c5t]$ ,quality ,c>e = ,life ,act1 !    
,secret>y %all update & exp& ! ,septemb]
 #bjjb report ( ! ,heal? ,res\rces &    
,s]vices ,adm9i/ration1 titl$ ,!        
,supply1 ,dem& & ,use ( ,palliative ,c>e
 ,physicians 9 ! ,unit$ ,/ates4 ,su*    

update & expansion %all be bas$ on an   
exam9ation ( work=ce tr5ds1 work=ce     
capacity1 & tra9+ ne$s = palliative     
m$ic9e physicians1 physician assi/ants1 
nurse practition]s1 & o!r palliative c>e
 team memb]s 9 all c>e sett+s 9 ! ,unit$
 ,/ates1 z well z tra9+ ne$s = o!r      
m$ical speciali/s & non-physician       
cl9icians4  7h7 ,palliative c>e lead]%ip
 c5t] def9$ ,= purposes ( ?is section1 !
 t]m palliative c>e lead]%ip c5t] means 
a c5t]-- 7#a7 t tra9s hospital          
palliative c>e programs2  7#b7 t        
provides int5sive op]ational tra9+ &    
m5tor+ = palliative c>e programs at e   
/age ( developm5t & gr[?2 &  7#c7 t     
provides tra9+ ori5t$ to teams r ?an    
individuals1 & involves p>ticipation by 
teams ( hospital & hospice heal? c>e    
pr(essionals involv$ 9 />t+ or runn+ a  
palliative c>e program1 includ+         
physicians1 nurses1 social work]s1      
adm9i/rators & f9ancial manag]s4  7i7   
,au?orization ( appropriations ,!re is  
au?oriz$ to be appropriat$ to c>ry out  

?is section su* sums z are necess>y =   
ea* ( ! fiscal ye>s #bjad ?r\gh #bjai4  
4  #f4 ,quality ( life cross-ag5cy      
advisory committee ,"p ,w ( title ,,iii 
( ! ,public ,heal? ,s]vice ,act1 z add$ 
by section #d & am5d$ by section #e1 is 
fur!r am5d$ by add+ at ! end ! foll[+   
new section3  #cii,,oo-#b4 ,quality (   
life cross-ag5cy advisory committee  7a7
 ,e/abli%m5t ,n lat] ?an #ij days aft] !
 date ( ! enactm5t ( ?is section &      
subject to subsection 7e71 ! ,secret>y  
%all e/abli% a ,quality ( ,life         
,cross-,ag5cy ,advisory ,committee 79   
?is section to be ref]r$ to z !         
,advisory ,committee7 to advise1        
coord9ate1 & assi/ ! ,c5t]s = ,disease  
,control & ,prev5tion & ! ,heal?        
,res\rces & ,s]vices ,adm9i/ration 9    
creat+ & conduct+ ! national quality (  
life education & aw>5ess initiative "u  
section #cii,,oo & ! heal? c>e          
pr(essional work=ce tra9+ initiative "u 
section #cii,,oo-#a & dissem9ate f9d+s t
 h be5 id5tifi$ f su* initiatives =     

cross ag5cy implem5tation ( be/         
practices4  7b7 ,memb]%ip ,! ,advisory  
,committee %all be compos$ ( memb]s :o  
%all be appo9t$ by ! ,secret>y & %all   
include repres5tatives (-- 7#a7 !       
,dep>tm5t ( ,heal? & ,human ,s]vices1   
includ+ f ! ,c5t]s = ,disease ,control &
 ,prev5tion1 ! ,heal? ,res\rces &       
,s]vices ,adm9i/ration1 ! ,ag5cy =      
,heal?c>e ,rese>* & ,quality1 ! ,c5t]s =
 ,m$ic>e  ,m$icaid ,s]vices1 & !        
,national ,in/itutes ( ,heal?2  7#b7 !  
,dep>tm5t ( ,vet]ans ,affairs2  7#c7 !  
,dep>tm5t ( ,def5se2  7#d7 public &     
private organizations ) exp]tise 9      
pati5t-c5t]$ c>e1 palliative c>e1       
psy*osocial c>e1 & symptom managem5t &  
survivor%ip2 &  7#e7 su* o!r            
repres5tatives z ! ,secret>y deems      
necess>y4  7c7 ,duties ,! ,advisory     
,committee %all-- 7#a7 evaluate !       
results ( ! programs fund$ by ! grants  
aw>d$ "u section #cii,,oo7b7 & "u       
section #cii,,oo-#a7;b72  7#b7 coord9ate
 & implem5t a cross-ag5cy /rategic plan1

 ) respect to ! ag5cies specifi$ 9      
subsection 7b71 to dissem9ate f9d+s f   
su* programs2  7#c7 advise ! ,secret>y (
 ,heal? & ,human ,s]vices on /rategies =
 dissem9at+ across ag5cies specifi$ 9   
subsection 7b7 recomm5dations f !       
,national ,action ,ag5da describ$ 9     
section #c7;c77#a7 ( ! ,pati5t ,c5t]$   
,quality ,c>e = ,life ,act2  7#d7       
consid] & summ>ize rec5t advances a*iev$
 9 symptom managem5t & survivor%ip      
rese>* relevant to ! goals ( ?is "p &   
make recomm5dations to ! ,director ( !  
,national ,in/itutes ( ,heal? on gaps 9 
basic1 cl9ical1 behavioral1 or o!r      
rese>* requir$ to a*ieve fur!r          
improvem5ts 9 c>e to support quality (  
life & survivor%ip2  7#e7 develop a     
/rategy = develop+ new & enhanc+ heal?  
surveillance tools us$ to track         
symptoms1 late effects1 & quality c>e   
tr5ds ov] "t1 includ+ national surveys (
 ! ov]all population ( ! ,unit$ ,/ates1 
su* z ! ,national ,heal? ,int]view      
,survey & ! ,behavioral ,risk ,factor   

,surveillance ,sy/em conduct$ by !      
,c5t]s = ,disease ,control & ,prev5tion 
& ! ,heal? ,in=mation ,national ,tr5ds  
,survey conduct$ by ! ,national         
,in/itutes ( ,heal?1 z well z           
adm9i/rative databases & disease        
regi/ries su* z databases ( ! ,c5t]s =  
,m$ic>e  ,m$icaid ,s]vices1 !           
,surveillance ,epidemiology & ,end      
,results 7,,se]7 canc] regi/ries program
 ( ! ,national ,canc] ,in/itute1 !      
,,se]-,m$ic>e ,l9k$ ,database ( !       
,national ,canc] ,in/itute1 & !         
,national ,program ( ,canc] ,regi/ries (
 ! ,c5t]s = ,disease ,control &         
,prev5tion2 &  7#f7 make appropriate    
updates & add5dums annually to !        
,national ,action ,ag5da4  7d7 ,meet+s  
,! ,advisory ,committee %all meet at    
lea/ once a ye>4  7e7 ,au?orization (   
appropriations ,!re are au?oriz$ to be  
appropriat$ to c>ry out ?is section su* 
sums z are necess>y = ea* ( ! fiscal    
ye>s #bjad ?r\gh #bjai4  4  #g4 ,enhanc+
 rese>* 9 support ( pati5t quality (    

life  7a7 ,9 g5]al ,"p ,w ( title ,,iii 
( ! ,public ,heal? ,s]vice ,act1 z add$ 
by section #d & am5d$ by sections #e &  
#f1 is fur!r am5d$ by add+ at ! end !   
foll[+ new section3  #cii,,oo-#c4       
,enhanc+ rese>* 9 support ( pati5t      
quality ( life  7a7 ,9 g5]al ,!         
,secret>y1 act+ ?r\gh ! ,director ( !   
,national ,in/itutes ( ,heal?1 %all     
develop & implem5t a /rategy to be      
appli$ across ! in/itutes & c5t]s ( !   
,national ,in/itutes ( ,heal? t is 9    
accordance ) recomm5dations ( !         
,advisory ,committee e/abli%$ "u section
 #cii,,oo-#b to exp& national rese>*    
programs 9 symptom managem5t1           
palliative1 psy*osocial1 & survivor%ip  
c>e4  7b7 ,rese>* programs ,! ,director 
( ! ,national ,in/itutes ( ,heal? %all  
exp& & int5sify rese>* programs 9       
symptom managem5t & palliative1         
psy*osocial1 & survivor%ip c>e & rese>* 
programs t address ! quality ( life ne$s
 = ! rapidly gr[+ population 9 ! ,unit$ 
,/ates ( s]i\sly ill pati5t 7) illnesses

 su* z canc]2 he>t1 r5al & live failure2
 lung disease2 & ,alzheim]'s disease &  
relat$ dem5tias74  4  7b7 ,exp&+        
,trans-,,nih rese>* report+ ,to include 
quality ( life & survivor%ip rese>*     
7#a7 ,9 g5]al ,section                  
#djb;,a7c77#b77;,b77i7 ( ! ,public      
,heal? ,s]vice ,act 7#db ,u4,s4,c4      
#bhb;a7c77#b77;,b77i77 is am5d$ by      
ins]t+ & = conduct+ or support+ rese>* )
 respect to quality ( life & survivor%ip
 aft] or national c5t]s4  7#b7          
,effective date ,! am5dm5t made by      
p>agraph 7#a7 %all apply ) respect to   
reports requir$ on or aft] ,janu>y #a1  
#bjad4