,i #aad? ,,congress #b;d ,session ,h4 ,r4 #eeee ,,9 ,,! ,,h\se ,,( ,,repres5tatives ,june #bb1 #bjaf,mr4 ,blum5au] 7= himself & ,mr4 ,roe ( ,t5nessee7 introduc$ ! foll[+ bill2 :i* 0 ref]r$ to ! ,committee on ,en]gy & ,comm]ce1 & 9 addition to ! ,committee on ,ways & ,means1 = a p]iod to be subsequ5tly det]m9$ by ! ,speak]1 9 ea* case = consid]ation ( su* provisions z fall )9 ! jurisdiction ( ! committee conc]n$ ,a ,,bill ,to am5d titles ,,xviii & ,,xix ( ! ,social ,security ,act to improve end-(-life c>e & advanc$ illness managem5t4 #a4 ,%ort title2 f9d+s2 table ( cont5ts 7a7 ,%ort title ,?is ,act may be cit$ z ! ,p]sonalize ,y\r ,c>e ,act #b4j4 7b7 ,f9d+s ,congress f9ds ! foll[+3 7#a7 ,all individuals %\ld be af=d$ ! opportunity to fully p>ticipate 9 decisions relat$ to _! heal? c>e4 7#b7 ,c>e ne> ! end ( life %\ld be p]son- & family-ori5t$ & evid5ce-bas$4 7#c7 ,to ensure high-quality1 p]son-c5t]$ c>e ne> ! end ( life1 c>e mu/ align ) an individual's goals1 values1 & /at$ pref]5ces4 7#d7 ,advance c>e plann+ plays a valuable role 9 a*iev+ quality c>e by in=m+ provid]s & family memb]s ( an individual's treatm5t pref]5ces4 7#e7 ,all cl9icians :o c>e = p ) advanc$ s]i\s illness %\ld demon/rate compet5ce 9 basic advance c>e plann+ & palliative c>e1 includ+ communication skills1 int]-pr(essional collaboration1 & symptom managem5t4 7#f7 ,m %\ld be done to e/abli% specific policies & programs to assi/ p ) s5sory1 m5tal1 & o!r disabilities 9 ord] to maximize ! degree to :i* !y are active p>ticipants 9 ! decisions relat$ to _! heal? c>e1 includ+ tra9+ heal? c>e provid]s h[ to communicate ) p ) developm5tal1 psy*iatric1 spee*1 & s5sory disabilities4 7#g7 ,includ+ complet$ advance c>e plann+ docum5ts )9 a pati5t's electronic heal? record c increase ! likelihood ^! docum5ts are kept curr5t & available at ! "r place at ! "r "t4 7#h7 ,a decade ( rese>* has demon/rat$ t physician ord]s = life-su/a9+ treatm5t effectively convey pati5t pref]5ces & guide m$ical p]sonnel t[>d m$ical treatm5t align$ ) pati5t wi%es4 7#i7 ,pati5ts1 c>egiv]s1 families1 & heal? pr(essionals w\ld b5efit f an au?oritative1 validat$ li/ ( core compon5ts to ! deliv]y high-quality end-(-life c>e4 7#aj7 ,palliative c>e1 hospice1 & v>i\s c>e models t integrate heal? c>e & supportive s]vices provide high-quality end-(-life c>e & r$uce ! use ( avoidable hospital- & in/itution-bas$ s]vices t ! pati5t does n want4 7c7 ,table ( cont5ts ,! table ( cont5ts ( ?is ,act is z foll[s3 ,sec4 #a4 ,%ort title2 f9d+s2 table ( cont5ts4 ,sec4 #b4 ,advanc$ illness managem5t & *oices c>e model demon/ration program4 ,sec4 #c4 ,grants = programs = ord]s = life-su/a9+ treatm5t & simil> provid] or m$ical ord]s4 ,sec4 #d4 ,advance c>e plann+ /&>ds = electronic heal? records4 ,sec4 #e4 ,portability ( advance directives4 ,sec4 #f4 ,application ( quality measures "u ,m$ic>e relat+ to end-(-life c>e4 ,sec4 #g4 ,annual report on ,m$ic>e dec$5ts4 ,sec4 #h4 ,grants to increase public aw>5ess ( advance c>e plann+4 ,sec4 #i4 ,advance c>e plann+ & palliative c>e education & tra9+4 ,sec4 #aj4 ,advance ,c>e ,plann+ ,advisory ,c\ncil4 #b4 ,advanc$ illness managem5t & *oices c>e model demon/ration program 7a7 ,9 g5]al ,! ,secret>y ( ,heal? & ,human ,s]vices 79 ?is section ref]r$ to z ! ,secret>y7 %all e/abli% a #c-ye> demon/ration program 79 ?is section ref]r$ to z ! demon/ration program7 to te/ ! use ( advanc$ illness managem5t & e>ly use ( palliative c>e "u ! ,m$ic>e program4 ,! ,secret>y may ext5d ! program to a duration ( #d or #e ye>s1 z det]m9$ necess>y by ! ,secret>y 9 coord9ation ) ! ,c5t]s = ,m$ic>e & ,m$icaid ,innovation4 7b7 ,demon/ration program design ,"u ! demon/ration program ! ,secret>y %all e/abli% a capitat$ paym5t = ! paym5t ( advanc$ illness managem5t s]vices & ! e>ly use ( palliative c>e consi/5t ) ! foll[+3 7#a7 ,! s]vices & c>e are furni%$ to individuals :o-- 7,a7 reside at home or 9 an in/itutional sett+2 7,b7 h a docum5t$ m$ical prognosis t ! individual's life expectancy is #bd mon?s or less2 & 7,c7 h ! ne$ = assi/ance ) two or m activities ( daily liv+ or meet su* o!r crit]ia z ! ,secret>y may specify4 7#b7 ,! s]vices & c>e are furni%$ concurr5tly ) ! receipt ( s]vices relat$ to ! treatm5t ( ! individual's condition ) respect to :i* a diagnosis ( t]m9al illness has be5 made4 7#c7 ,! s]vices & c>e include at lea/ hospice c>e 7z def9$ 9 section #ahfa7;dd77#a7 ( ! ,social ,security ,act71 a functional assessm5t ( ! individual & ( ! family c>egiv] 7z appropriate71 9-home s]vices & supports1 #bd-;h\r1 #g-;day-a-week em]g5cy supports1 c>e coord9ation & communication across sett+s & provid]s1 & su* o!r palliative c>e s]vices z ! ,secret>y deems necess>y4 7#d7 ,! s]vices & c>e are furni%$ by an int]discipl9>y team t includes prim>y c>e provid]s1 palliative m$ic9e speciali/s1 palliative nurses1 social work]s1 *apla9s1 ph>maci/s1 dieticians1 physical !rapi/s1 occupational !rapi/s1 psy*o!rapi/s1 & su* o!rs z ! ,secret>y deems necess>y & appropriate4 7c7 ,timely implem5tation ,! ,secret>y ( ,heal? & ,human ,s]vices %all implem5t a capitat$ paym5t model = ! paym5t ( advanc$ illness managem5t s]vices "u subsection 7a7 n lat] ?an #b ye>s aft] ! date ( ! enactm5t ( ?is ,act4 #c4 ,grants = programs = ord]s = life-su/a9+ treatm5t & simil> provid] or m$ical ord]s 7a7 ,9 g5]al ,! ,secret>y ( ,heal? & ,human ,s]vices %all make grants to eligible entities = ! purpose ( develop+1 exp&+1 & enhanc+ programs = ord]s = life-su/a9+ treatm5t 7z def9$ 9 subsection 7c77#b774 7b7 ,au?oriz$ activities ,activities fund$ ?r\gh a grant "u ?is section = an area may include-- 7#a7 develop+ su* a program = ! area t includes hospitals1 home c>e1 hospice1 long-t]m c>e1 community & assi/$ liv+ resid5ces1 skill$ nurs+ facilities1 & em]g5cy m$ical s]vices )9 a ,/ate2 7#b7 exp&+ an exi/+ program = ord]s reg>d+ life-su/a9+ treatm5t to s]ve m pati5ts or enhance ! quality ( s]vices1 includ+ educational s]vices = pati5ts & pati5ts' families1 tra9+ ( heal? c>e pr(essionals1 or e/abli%+ an ord]s = life-su/a9+ treatm5t regi/ry2 & 7#c7 te*nical assi/ance & pr(essional tra9+4 7c7 ,def9itions ,9 ?is section3 7#a7 ,! t]m eligible entity includes-- 7,a7 an academic m$ical c5t]1 a m$ical s*ool1 a ,/ate heal? dep>tm5t1 a ,/ate m$ical association1 a multi/ate task =ce1 a hospital1 or a heal? sy/em capable ( adm9i/]+ a program = physician ord]s reg>d+ life-su/a9+ treatm5t = a ,/ate2 or 7,b7 any o!r heal? c>e ag5cy or entity z ! ,secret>y det]m9es appropriate4 7#b7 ,! t]m program = ord]s = life-su/a9+ treatm5t means a program t1 reg>dless ( its "n-- 7,a7 implem5ts a cl9ical process design$ to facilitate %>$1 in=m$ m$ical decisionmak+ & communication betwe5 heal? c>e pr(essionals & pati5ts ) s]i\s1 progressive illness or frailty & results 9 a set ( m$ical ord]s t are sub/antially consi/5t ) ! national /&>d & t-- 7i7 are portable & honor$ across c>e sett+s2 & 7ii7 address key m$ical decisions consi/5t ) ! pati5t's goals ( c>e2 & 7,b7 is guid$ by a coalition ( /akehold]s1 su* z pati5t advocacy gr\ps & repres5tatives f across ! cont9uum ( heal? c>e s]vices1 disability rights advocates1 s5ior advocates1 em]g5cy m$ical s]vices1 long-t]m c>e1 m$ical associations1 hospitals1 home heal?1 hospice1 nurs+ associations1 ! ,/ate ag5cy responsible = s5ior & disability s]vices1 fai?-bas$ gr\ps1 & ! ,/ate dep>tm5t ( heal?4 7#c7 ,! t]m ,secret>y means ! ,secret>y ( ,heal? & ,human ,s]vices4 7d7 ,au?orization ( appropriations ,to c>ry out ?is section1 !re are au?oriz$ to be appropriat$ #ce1jjj1jjj = ! #e-;fiscal-ye> p]iod beg9n+ ) fiscal ye> #bjag1 to rema9 available until exp5d$4 #d4 ,advance c>e plann+ /&>ds = electronic heal? records 7a7 ,9 g5]al ,not)/&+ section #cjjd7;b77#c7 ( ! ,public ,heal? ,s]vice ,act 7#db ,u4,s4,c4 #cjj;jj-#ad7;b77#c771 n lat] ?an #d ye>s aft] ! date ( ! enactm5t ( ?is ,act1 ! ,secret>y ( ,heal? & ,human ,s]vices %all adopt1 by rule1 /&>ds = a qualifi$ electronic heal? record 7z def9$ 9 section #cjjj7ac7 ( su* ,act 7#db ,u4,s4,c4 #cjj;jj7#ac771 ) respect to organiz+ pati5t communications ) heal? c>e provid]s ab\t c>e goals & to provide "o-click access to ! foll[+3 7#a7 ,! pati5t's curr5t advance directive 7z def9$ 9 section #ahff7;f77#c7 ( ! ,social ,security ,act 7#db ,u4,s4,c4 #acie;cc7f77#c771 z applicable4 7#b7 ,! pati5t's curr5t ord] = life-su/a9+ treatm5t 7describ$ 9 section #c7;c77#b77;,a771 z applicable4 7#c7 ,docum5tation ( advance c>e plann+ discussion betwe5 ! pati5t & ! provid]4 7b7 ,treatm5t ( /&>ds ,a /&>d adopt$ "u subsection 7a7 %all be treat$ z a /&>d adopt$ "u section #cjjd ( ! ,public ,heal? ,s]vice ,act 7#db ,u4,s4,c4 #cjj;jj-#ad7 = purposes ( c]tify+ qualifi$ electronic heal? records pursuant to section #cjja7;c77#e7 ( su* ,act 7#db ,u4,s4,c4 #cjj;jj-#aa7;c77#e774 #e4 ,portability ( advance directives 7a7 ,9 g5]al ,section #ahff7;f7 ( ! ,social ,security ,act 7#db ,u4,s4,c4 #acie;cc7f77 is am5d$ by add+ at ! end ! foll[+ new p>agraph3 7#e7 7,a7 ,an advance directive validly execut$ outside ! ,/ate 9 :i* su* directive is pres5t$ mu/ be giv5 effect by a provid] ( s]vices or organization to ! same ext5t z an advance directive validly execut$ "u ! law ( ! ,/ate 9 :i* x is pres5t$4 7,b7 ,9 ! abs5ce ( k to ! contr>y1 a physician or o!r heal? c>e provid] or organization may presume t a writt5 advance heal? c>e directive or simil> in/rum5t1 reg>dless ( :]e execut$1 is valid4 7,c7 ,9 ! abs5ce ( a validly execut$ advance directive1 any au!ntic expression ( a p]son's wi%es ) respect to heal? c>e %all be honor$4 7,d7 ,! provisions ( ?is p>agraph %all preempt any ,/ate law on advance directive portability to ! ext5t su* law is inconsi/5t ) su* provisions4 ,no?+ 9 ! p>agraph %all be con/ru$ to au?orize ! adm9i/ration ( heal? c>e treatm5t o!rwise prohibit$ by ! laws ( ! ,/ate 9 :i* ! directive is pres5t$4 4 7b7 ,,gao /udy on heal? c>e decisionmak+ laws & b>ri]s to ! use ( advance directives 7#a7 ,/udy ,! ,comptroll] ,g5]al ( ! ,unit$ ,/ates %all conduct a /udy t exam9es ! use1 portability1 & electronic /orage ( advance directives & t id5tifies b>ri]s t[>ds adopt+1 us+1 & foll[+ advance directives 9 ! cl9ical sett+4 ,su* exam9ation %all include issues t rema9 unresolv$ aft] ! ,/age #c ,mean+ful ,use f9al rule1 includ+ b>ri]s & solutions to f9d+ & access+ advance c>e plann+ docum5ts1 be/ practices = al]t+ eligible provid]s to ! pres5ce ( an advance c>e plan1 & be/ practices = transmitt+ advance c>e plans across sites ( c>e4 7#b7 ,report ,n lat] ?an #a ye> aft] ! date ( ! enactm5t ( ?is ,act1 ! ,comptroll] ,g5]al %all submit to ,congress a report on ! /udy conduct$ "u p>agraph 7#a7 & %all include 9 ! report su* recomm5dations reg>d+ improv+ advance heal? c>e plann+ z ! ,comptroll] ,g5]al deems appropriate4 #f4 ,application ( quality measures "u ,m$ic>e relat+ to end-(-life c>e 7a7 ,incorporat+ end-(-,life c>e subdoma9s )9 quality doma9s "u ,m$ic>e physician fee s*$ule ,section #ahdh7s77#a7 ( ! ,social ,security ,act 7#db ,u4,s4,c4 #aciew-#d7s77#a77 is am5d$ by add+ at ! end ! foll[+ new subp>agraph3 7,g7 ,end-(-life subdoma9s relat+ to quality doma9s ,)9 "o or m appropriate quality doma9s1 ! ,secret>y %all e/abli% subdoma9s relat+ to end-(-life c>e1 includ+ subdoma9s relat+ to ea* ( ! foll[+3 7i7 ,! process ( elicit+ & docum5t+ goals1 pref]5ces1 & values ( ! pati5t 7&1 :]e relevant & appropriate1 family c>egiv]7 reg>d+ end-(-life c>e f ! pati5t or f a legally au?oriz$ repres5tative1 includ+ ! articulation ( goals t accurately reflect h[ ! pati5t wants to live4 7ii7 ,! effectiv5ess1 pati5t-c5t]$ness 7&1 :]e relevant1 family c>egiver-c5t]$ness71 & accuracy ( end-(-life c>e plans1 includ+ docum5tation ( individual goals1 pref]5ces1 & values4 7iii7 ,agreem5t & consi/5cy ) respect to end-(-life c>e among-- 7,i7 pati5t's goals1 values1 & pref]5ces2 7,,ii7 any docum5t$ c>e plan2 & 7,,iii7 ! c>e deliv]$4 4 7b7 ,incorporat+ quality measures on end-(-,life c>e = po/-,acute c>e 7,,pac7 ,section #ahii;,b ( ! ,social ,security ,act 7#db ,u4,s4,c4 #acielll7 is am5d$-- 7#a7 9 subsection 7a77#b77;,e77i7-- 7,a7 by /rik+ & at ! end ( subclause 7,,iv72 7,b7 by /rik+ ! p]iod at ! end ( subclause 7,v7 & ins]t+ 2 &2 & 7,c7 by add+ at ! end ! foll[+ new subclause3 7,,vi7 ) respect to ! doma9 describ$ 9 subsection 7c77#a77;,f7 7relat+ to end-(-life c>e7-- 7aa7 = ,,pac provid]s describ$ 9 clauses 7ii71 7iii71 & 7iv7 ( p>agraph 7#b77;,a71 ,octob] #a1 #bjah2 & 7bb7 = ,,pac provid]s describ$ 9 clauses 7i7 ( su* p>agraph1 ,janu>y #a1 #bjai4 2 & 7#b7 9 subsection 7c77#a71 by add+ at ! end ! foll[+ new subp>agraph3 7,f7 ,! effectiv5ess1 pati5t-c5t]$ness 7&1 :]e relevant1 family c>egiver-c5t]$ness71 & accuracy ( end-(-life c>e plans & communications relat+ to su* plans1 includ+-- 7i7 docum5tation ( a pati5t's goals1 pref]5ces1 & values2 & 7ii7 agreem5t & consi/5cy ) respect to end-(-life c>e among-- 7,i7 pati5t's goals1 values1 & pref]5ces2 7,,ii7 any docum5t$ c>e plan2 & 7,,iii7 ! c>e deliv]$4 4 #g4 ,annual report on ,m$ic>e dec$5ts ,! ,secret>y ( ,heal? & ,human ,s]vices %all issue = ea* fiscal ye> 7beg9n+ no lat] ?an fiscal ye> #bjah7 an annual report t analyzes ! circum/ances ( ,m$ic>e b5efici>ies :o di$ dur+ ! fiscal ye> cov]$ by su* report4 ,su* analysis %all include at lea/ ! foll[+ ) respect to su* dec$5ts3 7#a7 ,in=mation on ! c>e or payor sett+s 7su* z "u "p ,a or "p ,c ( ,m$ic>e7 at ! "t ( dea?4 7#b7 ,in=mation on ! demographic *>act]i/ics ( su* dec$5ts4 7#c7 ,in=mation on ! geographic di/ribution ( su* dec$5ts4 7#d7 ,an evaluation ( ! ,m$ic>e claims data = su* dec$5ts = s]vices furni%$ 9 ! la/ ye> ( life1 includ+ an analysis ( ! sett+ ( c>e = dec$5ts :o _h m ?an "o *ronic illness at ! "t ( dea?4 7#e7 ,su* o!r in=mation z ! ,secret>y deems appropriate4 #h4 ,grants to increase public aw>5ess ( advance c>e plann+ 7a7 ,9 g5]al ,! ,secret>y ( ,heal? & ,human ,s]vices %all aw>d grants to increase public aw>5ess ( advance c>e plann+4 ,su* grants %all be aw>d$ "u su* t]ms & conditions z ! ,secret>y %all specify4 7b7 ,types ( grants ,grants "u ?is section may provide = ! developm5t (-- 7#a7 decision support tools & in/ructional mat]ials = individuals1 family c>egiv]s1 & heal? c>e provid]s t include ! importance ( plann+ = treatm5t decisions1 discuss+ values & goals relat$ to cata/rophic injury or illness1 & complet+ an advance directive2 & 7#b7 mat]ials = individuals t pres5ts ! importance ( articulat+ goals ( c>e1 und]/&+ disease diagnosis & prognosis1 evaluat+ treatm5t options1 & develop+ a plan ( c>e1 & docum5t+ ! treatm5t plan4 7c7 ,au?orization ( appropriations ,!re are au?oriz$ to be appropriat$ to c>ry out ?is section = ! #e-;fiscal-ye> p]iod beg9n+ ) fiscal ye> #bjag #bj1jjj1jjj1 to rema9 available until exp5d$4 #i4 ,advance c>e plann+ & palliative c>e education & tra9+ 7a7 ,9 g5]al ,! ,secret>y ( ,heal? & ,human ,s]vices %all aw>d grants to eligible entities to develop & implem5t programs & initiatives to tra9 & educate individuals to provide advance c>e plann+1 advance illness c>e1 hospice c>e1 & palliative c>e 9 hospital1 hospice1 home1 community1 & long-t]m c>e sett+s4 7b7 ,eligible entities ,= purposes ( ?is section1 eligible entities may be a m$ical s*ool1 a nurs+ s*ool1 a heal? c>e sy/em1 non-pr(it organization1 or o!r entity ! ,secret>y deems appropriate4 7c7 ,use ( funds ,fund+ "u grants aw>d$ "u ?is section %all be us$-- 7#a7 to provide tra9+ & cont9u+ education to individuals :o w provide advance c>e plann+ s]vices or palliative c>e 9 ! hospital1 hospice1 home1 community1 & long-t]m c>e sett+s2 & 7#b7 to develop curricula or tea*+ mat]ials relat$ to advance c>e plann+ or palliative c>e 9 su* sett+s4 7d7 ,au?orization ( appropriations ,!re are au?oriz$ to be appropriat$ to c>ry out ?is section = ! #e-;fiscal-ye> p]iod beg9n+ ) fiscal ye> #bjag #bj1jjj1jjj1 to rema9 available until exp5d$4 #aj4 ,advance ,c>e ,plann+ ,advisory ,c\ncil 7a7 ,e/abli%m5t ,n lat] ?an #ahj days aft] ! date ( ! enactm5t ( ?is ,act1 ! ,secret>y ( ,heal? & ,human ,s]vices 79 ?is section ref]r$ to z ! ,secret>y7 %all e/abli% )9 ! ,(fice ( ! ,secret>y an advisory committee to be kn[n z ! ,advance ,c>e ,plann+ ,advisory ,c\ncil 79 ?is section ref]r$ to z ! ,c\ncil74 7b7 ,duties 7#a7 ,mission ,! ,c\ncil %all advise ! ,secret>y reg>d+ ! compilation1 developm5t1 & dissem9ation ( res\rces = individuals fac+ advanc$ & t]m9al illness4 7#b7 ,responsibilities ,responsibilities ( ! c\ncil include ! foll[+3 7,a7 ,ensur+ t res\rces provid$ conta9 non-bias$ in=mation ab\t ! range ( options available to individuals ) advance & t]m9al illness1 includ+ in=mation ab\t conv5tional1 curative treatm5ts1 palliative c>e1 & hospice c>e4 7,b7 ,develop+ /rategies = increas+ public und]/&+ ab\t advanc$ illness & ! important role advance c>e plann+ c play 9 docum5t+ an individual's wi%es = m$ical c>e = lov$ ones 9 ! ev5t t individual _c communicate ! individual's 8 or h] wi%es4 7,c7 ,compil+ in=mation = dissem9ation reg>d+ exi/+ advance c>e plann+ models includ+ ,,pol/1 ,,mol/1 advance directives1 & heal?c>e proxies4 7,d7 ,promot+ int]ag5cy coord9ation & m9imiz+ ov]lap reg>d+ advance c>e plann+1 includ+ opportunities to coord9ate ef=ts betwe5 ! ,f$]al ag5cies & ext]nal /akehold]s4 7,e7 ,id5tify+ & evaluat+ cross-cutt+ issues su* z p]9atal end-(-life c>e & advance c>e plann+ access issues4 7c7 ,memb]%ip 7#a7 ,9 g5]al ,! ,c\ncil %all be compos$ ( up to #ae memb]s appo9t$ by ! ,secret>y f among qualifi$ individuals :o are n (fic]s or employees ( ! ,f$]al ,gov]nm5t4 7#b7 ,gr\ps ,! memb]s ( ! ,c\ncil %all include ! foll[+3 7,a7 ,at lea/ #c memb]s ) cl9ical tra9+ & an exp]tise 9 advanc$ illness or end-(-life c>e4 7,b7 ,at lea/ #c memb]s f pati5t & family advocacy gr\ps4 7,c7 ,at lea/ #c memb]s f religi\s or spiritual organizations4 7,d7 ,o!r memb]s f int]e/$ /akehold] gr\ps ) a prov5 exp]tise 9 *ronic1 advanc$1 & end-(-life c>e4 7d7 ,applicability ( ,,faca ,! ,c\ncil %all be treat$ z an advisory committee subject to ! ,f$]al ,advisory ,committee ,act 7#e ,u4,s4,c4 ,app474