government agencies, public non-profit organizations, private businesses and media clients. Our senior staff have over 5
Ma ppi ng Pa l l i a t i ve Ca r e i n NH S ur ve y 2017
Pr epar ed by: S e a n P. Mc Ki nl e y, M. A. Tr a c y Ke i r ns , Ph. D. The S ur ve y Ce nt e r Uni ve r s i t y of Ne w Ha mps hi r e J une , 2017
T heUni v e r s i t yofNe wHamps hi r e S ur v eyCent er T heUNHS ur v e yCe nt e ri sa ni nde pe nde nt , nonpa rs a n a c a de mi cs ur v e yr e s e a r c hor g a ni z a ona nddi v i s i onof t heUNHCol l e g eofL i be r a l Ar t s . T heS ur v e yCe nt e rc onduc t st e l e phone , ma i l , we b, a nd i nt e r c e pts ur v e y s , a swe l l a sf oc usg r oupsa ndot he r qua l i t av er e s e a r c hf oruni v e r s i t yr e s e a r c he r s , g ov e r nme nta g e nc i e s , publ i cnonpr ofitor g a ni z a ons , pr i v a t ebus i ne s s e sa ndme di ac l i e nt s . Ours e ni ors t a ffha v eov e r50y e a r se x pe r i e nc ei n de s i g ni nga ndc onducngc us t omr e s e a r c honabr oa d r a ng eofpol ic a l , s oc i a l , he a l t hc a r e , a ndot he rpubl i c pol i c yi s s ue s .
Dr . Andr e wE . S mi t h, Di r e c t or UNHS ur v e yCe nt e r 9Ma dbur yRoa d, S ui t e402 Dur ha m, Ne wHa mps hi r e03824 6038622226 Andr e w. S mi t h@unh. e du
T a bl eofCont ent s E x e c uv eS umma r y . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1 Ke yF i ndi ng s. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1 De mog r a phi cPr ofil e . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2 AboutY ourOr g a ni z a on. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3 Y ourOr g a ni z a on' sPa l l i av eS e r v i c e s . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3 Cos tRe c ov e r y . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 14 S t a ffa ndRe t e n on. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 16 Pa l l av eCa r eI nf or ma on. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 17 Appe ndi xA: Ope nE nde dRe s pons e s . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 22 Appe ndi xB: S ur v e yI ns t r ume nt . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 31
Exec ut i veSummar y T heUni v e r s i t yofNe wHa mps hi r eS ur v e yCe nt e rc onduc t e das ur v e yf ort heQua l i t yofL i f eT a s kF or c eoft heNHCompr e he ns i v e Ca nc e rCol l a bor a on( NHCCC)a ndNHHos pi c ea ndPa l l i av eCa r eOr g a ni z a on( NHHPCO)t ounde r s t a ndt hec ur r e nt l a nds c a peofpa l l i av ec a r es e r v i c e si nt hes t a t e , howpa e nt sa c c e s spa l l i av ec a r es e r v i c e s , a ndt oi de nf yba r r i e r st oc a r ea nd wha tc a nbedonet or e mov et hos eba r r i e r s . Ane ma i l i nv i t a ont oc ompl e t et hei nt e r ne ts ur v e ywa ss e ntt oonehundr e da nd t hi r t y s i x( 136)he a l t hpr ov i de r sonMa y4, 2017a ndr e mi nde re ma i l swe r es e ntonMa y10, Ma y17, a ndMa y24, 2017. Ov e r a l l , s e v e nt y one( 71)c a r epr ov i de r sr e s ponde dt ot hes ur v e y , wi t hf or t y s i x( 46)f ul l yc ompl e ngt hes ur v e y , y i e l di ngac ompl e t e d r e s pons er a t eof34%. T hef ol l owi ngfig ur e sdi s pl a ys ur v e yr e s ul t s , Appe ndi xAc ont a i nst heope ne nde dr e s pons e s , a nd Appe ndi xBc ont a i nst hes ur v e yi ns t r ume nt .
KeyFi ndi ngs • Ne a r l yha l fofr e s ponde nt s ' or g a ni z a onspe r f or mf e we rt ha n10pa l l i av ec a r ei nia l orf ol l owupc ons ul t spe rmont hon a v e r a g ea nd18%s a yt he ydonotpr ov i depa l l i av ec a r ec ons ul t sa ta l l . • Af a rg r e a t e rpr oporonofpa e nt sa dmie d/ t r e a t e dorr e f e r r e dt opa l l i av ec a r ebyc a nc e rc e nt e r st ha nbyot he r or g a ni z a onsha v ebe e ndi a g nos e dwi t hc a nc e r , whi l eal a r g e rpr oporonofpa e nt sa dmie d/ t r e a t e dorr e f e r r e dt o pa l l i av ec a r ebyL T C-nur s i nghome st ha nbyot he ror g a ni z a onsha v ebe e ndi a g nos e dwi t hde me na . •T hr e e qua r t e r sormor eofr e s ponde nt ss a yt he i ror g a ni z a onha saphy s i c i a n, nur s epr a c one r , a ndpa s t or a l / s pi r i t ua l c a r epr ov i de ra spa r toft he i rpa l l i av ec a r et e a mbutl e s st ha naqua r t e rs a yt he yha v es t a ffi nt he s epos ionsde di c a t e d onl yf orpa l l i av ec a r e . Ve r yf e wr e s ponde nt sr e por tt he i ror g a ni z a onha sout s i dec ont r a c t e ds t a fff ora nyoft hepos ions i nt hepa l l i av ec a r et e a m. • Re s ponde nt sr e por tphy s i c i a ns , nur s epr a c one r s , a ndr e g i s t e r e dnur s e sa r et hepe opl ewhomos tf r e que nt l yc onduc t i nia l pa l l i av ec a r ea s s e s s me nt s . J us tov e rha l fofphy s i c i a nswhoc onduc tt he s ea s s e s s me nt sa r eboa r dc e rfie di n Hos pi c ea ndPa l l i av eCa r e( H&PC)whi l ej us tov e rat hi r dofnur s epr a c one r sa r e , butv e r yf e wr e g i s t e r e dnur s e swho c onduc tt he s ea s s e s s me nt sa r eH&PCc e rfie d. • Re s ponde nt sbe l i e v es t a ffi nt he i ror g a ni z a ona r emos tl i k e l yt obec onc e r ne dwhe nor de r i ngpa l l i av ec a r es e r v i c e sa bout ups e ngt hepa e nta ndf a mi l y , t he i ra bi l i t yt opr ov i deout pa e nts e r v i c e , ort hefina nc i a l bur de nont hepa e nta nd/ or t hepr og r a m. At hi r dofr e s ponde nt ss a yt he ys t a ffha v enoc onc e r ns . • Mor et ha nha l fofr e s ponde nt ss a yt he yc ov e rt hec os toft he i rpa l l i av ec a r es e r v i c e st hr oug hc l a i mss ubmi s s i on. L e s st ha n one fi hs a yt he ye mpl oyc os ta v oi da nc e , phi l a nt hr opy , g r a nt s , ora not he rme a nsf orc ov e r i ngc os t s . • Ne a r l ya l l r e s ponde nt sa g r e et ha tpr i v a t ei ns ur a nc epr ov i de r sne e dt obee duc a t e da boutpa l l i av ec a r es e r v i c e s . • Re s ponde nt s ' or g a ni z a onsmos tf r e que nt l yc onv e yi nf or ma ononpa l l i av ec a r et hr oug hpr i nt e dma t e r i a l sorv e r ba l l y . Re l av e l yf e wus ei nt e r ne tl i nk s , a udi o/ v i s ua l ma t e r i a l , ora not he rme di um. • Mos tr e s ponde nt sa r euna wa r eofe a c hoft hepoc k e tc a r dsde v e l ope dbyNHCCC/ NHHPOCPa l l i av eCa r eT ool k i ti t e msa nd onl y20%orl e s sofr e s ponde nt sha v eus e dt he m. •L e s st ha naqua r t e rofr e s ponde nt sa e nde dt os e nts t a fft oa e nde i t he rt heNHHPCOPa l l i av eCa r eBi l l i ngWor k s hopor t heNHHPCOHos pi c ea ndPa l l i av eCa r eRN/ L NACe rfic a onpr e pa r a onwor k s hop. •T hev a s tma j or i t yofr e s ponde nt s( 80%)pr e f e rt or e c e i v eupda t e sf orbe s tpr a cc e sofpa l l i av ec a r ev i ae ma i l ov e ra ny ot he rme di um.
Demogr aphi cPr of i l eofRespondent s I nst i t ut i onType 51%
L TC-Nur si ngHomes 17%
Hospi c e Canc erCent er s
15%
Hospi t al s
15%
PCPr i vat ePr ac t i c e
1% 0%
10%
20%
30%
40%
50%
60%
70%
80%
90%
100%
40%
50%
60%
70%
80%
90%
100%
60%
70%
80%
90%
100%
Regi on Cent r al / Lakes
25%
Hi l l sbor oughCount y
25%
Nor t her nNH
21% 26%
Seac oast 3%
West er nNH 0%
10%
20%
30%
Aver ageNumberofConsul t sPerMont h( I ni t i al&Fol l owUp) Mor et han50c onsul t sper mont h
16%
10t o50c onsul t sper mont h
16%
Fewert han10c onsul t sper mont h
45% 18%
Noc onsul t spr ovi ded 4%
Don' tknow 0%
10%
20%
30%
40%
50%
About Your Or gani z at i on Ne a r l yha l fofr e s ponde nt s( 46%)de s c r i bet he i ror g a ni z a ona sanur s i ng / s k i l l e d/ l ongt e r mc a r ef a c i l i t y , 17%s a yt he ya r ea home ba s e dhos pi c e&pa l l i av ec a r epr og r a m, 11%s a yt he ya r eahos pi t a l ba s e dpa l l i av ec a r epr og r a m, 9%de s c r i be t he ms e l v e sa sac a nc e rc e nt e r , a nd17%de s c r i bet he ms e l v e si na not he rwa y . Fi gur e1:Whi c hoft hef ol l owi ngbestdesc r i besyouror gani z at i on? 46%
Nur si ng/ Ski l l ed/ LongTer m Car eFac i l i t y 17%
HomebasedHospi c e&Pal l i at i veCar epr ogr am 11%
Hospi t al basedPal l i at i veCar epr ogr am 9%
Canc erCent er
17%
Ot her 0%
5%
10%
15%
20%
25%
30%
35%
40%
45%
50%
Your Or gani z at i on' s Pal l i at i ve Car e Ser vi c es E i g ht e e npe r c e nts a yt he i ror g a ni z a onona v e r a g epr ov i de smor et ha n50i nia l c ons ul t spe rmont h, 9%s a yt he i ror g a ni z a on pr ov i de s10t o50pe rmont h, 39%s a yt he i ror g a ni z a onpr ov i de sf e we rt ha n10c ons ul t spe rmont h, 27%s a yt he i ror g a ni z a on doe snotpr ov i dea nyi nia l c ons ul t sa ta l l , a nd7%don' tk nowora r euns ur e . Fi gur e2:Onaver age,how manyi ni t i alpal l i at i vec ar ec onsul t sdoesyourpr ogr am pr ovi depermont h?I ni t i al Consul t s 18%
Mor et han50c onsul t spermont h 10t o50c onsul t spermont h
9%
Fewert han10c onsul t spermont h
39%
Noc onsul t spr ovi ded
27%
Don' tknow
7% 0%
10%
20%
30%
40%
50%
60%
70%
80%
90%
100%
E i g htpe r c e ntofr e s ponde nt ss a yt he i ror g a ni z a onpr ov i de smor et ha n50f ol l owupc ons ul t spe rmont h, 20%s a yt he i r or g a ni z a onpr ov i de s10t o50pe rmont h, ha l f( 50%)s a yt he i ror g a ni z a onpr ov i de sf e we rt ha n10c ons ul t spe rmont h, 18% s a yt he i ror g a ni z a onpr ov i de snof ol l owupc ons ul t sa ta l l , a nd5%don' tk nowora r euns ur e .
Fi gur e3:Onaver age,how manyf ol l owuppal l i at i vec ar ec onsul t sdoesyourpr ogr am pr ovi depermont h? Fol l owupvi si t s Mor et han50c onsul t spermont h
8% 20%
10t o50c onsul t spermont h Fewert han10c onsul t spermont h
50%
Noc onsul t spr ovi ded
18%
Don' tknow
5% 0%
10%
20%
30%
40%
50%
60%
70%
80%
90%
100%
Mor et ha nt wot hi r ds( 69%)ofr e s ponde nt ss a yt he i ror g a ni z a onus e ss pe c i ficc r i t e r i at oi de nf ypa e nt si nne e dofpa l l i av e c a r ewhoha v ebe e ndi a g nos e dwi t hc a nc e r . S i x t y onepe r c e ntus es pe c i ficc r i t e r i af ort hos edi a g nos e dwi t hl ungdi s e a s e , 60% f ort hos edi a g nos e dwi t hhe a r tdi s e a s e , 55%f ort hos ewi t hr e na l di s e a s e , a nd54%f ort hos ewi t hde me na . T hi r t y t hr e e pe r c e ntofr e s ponde nt ss a yt he i ror g a ni z a onus e ss pe c i ficc r i t e r i af ort hos edi a g nos e dwi t ha not he rc ondion. Fi gur e4a:Doesyouror gani z at i onusespec i f i cc r i t er i at oi dent i f ypat i ent si nneedofpal l i at i vec ar ewi t ht he f ol l owi ngdi agnoses? Canc er
69%
L ungdi sease
31%
61%
39%
60%
Hear tdi sease Renaldi sease
40%
55%
Dement i a
45%
54%
Ot her
46%
33% 0%
10%
67%
20%
30%
40%
50%
60%
Yes
70%
80%
90%
100%
No
• Re s ponde nt swhos eor g a ni z a oni sac a nc e rc e nt e ra ndt hos ewhopr ov i def e we rt ha n10c ons ul t spe rmont ha r emor e l i k e l yt ha not he r st ous es pe c i ficc r i t e r i at oi de nf ypa e nt swi t hac a nc e rdi a g nos i si nne e dofpa l l i av ec a r e , whi l et hos e whos eor g a ni z a oni sl oc a t e di nNor t he r nNHa r el e s sl i k e l yt odos o. • Re s ponde nt swhos eor g a ni z a oni sac a nc e rc e nt e ra r emor el i k e l yt ha not he r st ous es pe c i ficc r i t e r i at oi de nf ypa e nt s wi t hal ungdi s e a s edi a g nos i si nne e dofpa l l i av ec a r e , whi l et hos ewhos eor g a ni z a oni sl oc a t e di nNor t he r nNHa r el e s s l i k e l yt odos o. • Re s ponde nt swhos eor g a ni z a oni sl oc a t e di nt heCe nt r a l / L a k e sr e g i ona ndt hos ewhos eor g a ni z a oni saL T C-nur s i ng homea r emor el i k e l yt ha not he r st ous es pe c i ficc r i t e r i at oi de nf ypa e nt swi t hade me n adi a g nos i si nne e dofpa l l i av e c a r e . Fi gur e4b:Doesyouror gani z at i onusespec i f i cc r i t er i at oi dent i f ypat i ent si nneedofpal l i at i vec ar ewi t ht he f ol l owi ngdi agnoses?-byDemogr aphi c s Ca nc e r Canc erCent er s
100%
Fewert han10c onsul t spermont h
82%
OVERALL
69%
Nor t her nNH
46%
L ungdi s e a s e Canc erCent er s
80%
OVERALL
61%
Nor t her nNH
46%
De me na Cent r al / L akes
67%
LTC-Nur si ngHomes
66%
OVERALL
54% 0%
10%
20%
30%
40%
50%
60%
70%
80%
90%
100%
Re s ponde nt sona v e r a g ee sma t et ha t33%oft hepa e nt sa dmie dt oort r e a t e da tt he i ror g a ni z a ona nnua l l yha v ebe e n di a g nos e dwi t hde me na , 26%ha v ec a nc e r , 15%ha v el ungdi s e a s e , 15%ha v ehe a r tdi s e a s e , 6%ha v er e na l f a i l ur e , a nd5% ha v ea not he rdi s e a s e . Fi gur e5a:Appr oxi mat el ywhatper c ent ageofpat i ent sadmi t t edt o/ t r eat edatyouror gani z at i onannual l y haveeac hoft hef ol l owi ngc ondi t i ons?-Aver age OVERAL L
33% 0%
10%
26%
20%
30%
40%
15% 50%
60%
15%
70%
80%
Dement i a
Lungdi sease
Renalf ai l ur e
Canc er
Hear tdi sease
Ot her
6% 90%
5% 100%
• Re s ponde nt swhos eor g a ni z a oni saL T C-nur s i nghomer e por tag r e a t e rpe r c e nt a g eofpa e nt sa dmie dort r e a t e da t t he i ror g a ni z a onha v ebe e ndi a g nos e dwi t hde me na , whi l et hos ewhos eor g a ni z a onpr ov i de smor et ha n50c ons ul t s pe rmont ha ndt hos ewhos eor g a ni z a oni sl oc a t e di nt heCe nt r a l / L a k e sr e g i onr e por tas ma l l e rpr oporonoft he i r pa e nt sha v et hi sdi a g nos i s . • Re s ponde nt swhos eor g a ni z a oni sac a nc e rc e nt e rr e por tag r e a t e rpe r c e nt a g eofpa e nt sa dmie dort r e a t e da tt he or g a ni z a onha v ebe e ndi a g nos e dwi t hc a nc e r . T hos ewhos eor g a ni z a oni saL T C-nur s i nghomer e por tas ma l l e r pr oporonoft he i rpa e nt sha v et hi sdi a g nos i s . Fi gur e5b:Per c ent ageofPat i ent sAdmi t t ed/ Tr eat edt oOr gani z at i onWi t hCondi t i on-Aver ageby Demogr aphi c s De me na L TC-Nur si ngHomes
50%
OVERAL L
33%
Mor et han50c onsul t spermont h
19%
Cent r al / Lakes
17%
Ca nc e r Canc erCent er s
74%
OVERAL L
26%
L TC-Nur si ngHomes
12% 0%
10%
20%
30%
40%
50%
60%
70%
80%
90%
100%
Re s ponde nt sona v e r a g ee sma t et ha t22%oft hepa e nt sr e f e r r e dt opa l l i av ec a r ea nnua l l yha v ebe e ndi a g nos e dwi t h de me na , 34%ha v ec a nc e r , 13%ha v el ungdi s e a s e , 11%ha v ehe a r tdi s e a s e , 7%ha v er e na l f a i l ur e , a nd13%ha v ea not he r di s e a s e . Fi gur e6a:Appr oxi mat el ywhatper c ent ageofpat i ent sr ef er r edt opal l i at i vec ar eannual l yhaveeac hoft he f ol l owi ngc ondi t i ons?-Aver age 22%
OVERAL L 0%
34%
10%
20%
30%
13%
40%
50%
11%
60%
70%
7% 80%
Dement i a
Lungdi sease
Renalf ai l ur e
Canc er
Hear tdi sease
Ot her
13% 90%
100%
• Re s ponde nt swhos eor g a ni z a oni saL T C-nur s i nghomer e por tag r e a t e rpe r c e nt a g eofpa e nt sr e f e r r e dt opa l l i av ec a r e a nnua l l yha v ebe e ndi a g nos e dwi t hde me na . • Re s ponde nt swhos eor g a ni z a oni sac a nc e rc e nt e rr e por tag r e a t e rpe r c e nt a g eofpa e nt sr e f e r r e dt opa l l i av ec a r e a nnua l l yha v ebe e ndi a g nos e dwi t hc a nc e r . Fi gur e6b:Per c ent ageofPat i ent sRef er r edt oPal l i at i veCar eWi t hCondi t i on-Aver agebyDemogr aphi c s De me na LTC-Nur si ngHomes
35%
OVERALL
22%
Ca nc e r Canc erCent er s
81%
OVERALL
34% 0%
10%
20%
30%
40%
50%
60%
70%
80%
90%
100%
E i g ht y t wope r c e ntofr e s ponde nt ss a yt ha tunma na g e dpa i noras y mpt omt r i g g e r sapa l l i av ec a r ec ons ul ti nt he i r or g a ni z a on, 74%s a yac ons ul ti st r i g g e r e dbyapa e ntorf a mi l yr e que s t , 58%byar e hos pi t a l i z a on, 42%byane e df or Adv a nc e dCa r ePl a nni ng , a nd32%bya not he roc c ur r a nc e . Fi gur e7a:Whatt r i gger sapal l i at i vec ar ec onsul ti nyouror gani z at i on?( Sel ec tal lt hatappl y) Unmanagedpai n/ sympt om
82% 74%
Pat i ent / f ami l yr equest Rehospi t i al i z at i on
58%
Needf orAdvanc edCar ePl anni ng
42%
Ot her
32% 0%
10%
20%
30%
40%
50%
60%
70%
80%
90%
100%
• Re s ponde nt swhos eor g a ni z a onpr ov i de smor et ha n50c ons ul t spe rmont ha ndt hos ewhos eor g a ni z a oni sac a nc e r c e nt e rorahos pi t a l a r emor el i k e l yt ha not he r st os a ya nunma na g e dpa i nors y mpt omt r i g g e r sapa l l i av ec a r ec ons ul ti n t he i ror g a ni z a on. • Re s ponde nt swhos eor g a ni z a onpr ov i de smor et ha n10c ons ul t spe rmont h, t hos ewhos eor g a ni z a oni sl oc a t e di nt he Ce nt r a l / L a k e sr e g i on, a ndt hos ewhos eor g a ni z a oni sahos pi t a l a r emor el i k e l yt ha not he r st os a yapa e ntorf a mi l y r e que s tt r i g g e r sapa l l i av ec a r ec ons ul ti nt he i ror g a ni z a on. T hos ewhos eor g a ni z a onpr ov i de sf e we rt ha n10c ons ul t s pe rmont ha r el e s sl i k e l yt os a ys o. • Re s ponde nt swhos eor g a ni z a oni sahos pi t a l a ndt hos ewhos eor g a ni z a onpr ov i de smor et ha n50c ons ul t spe rmont ha r e mor el i k e l yt ha not he r st os a yr e hos pi t a l i z a ont r i g g e r sapa l l i av ec a r ec ons ul ti nt he i ror g a ni z a on. T hos ewhos e or g a ni z a oni sl oc a t e di nHi l l s bor oug hCount ya ndt hos ewhos eor g a ni z a oni saL T C-nur s i nghomea r el e s sl i k e l yt os a y s o. Fi gur e7b:Tr i gger sf orPal l i at i veCar eConsul ti nOr gani z at i on-byDemogr aphi c s Unma na g e dpa i n/ s y mpt om Mor et han50c onsul t spermont h
100%
Canc erCent er s
100%
Hospi t al s
100%
OVERAL L
82%
Pa e nt / f a mi l yr e que s t Mor et han50c onsul t spermont h
100%
10t o50c onsul t spermont h
90%
Cent r al / Lakes
90%
Hospi t al s
86% 74%
OVERAL L 62%
Fewert han10c onsul t spermont h
Re hos pi t a l i z a on Hospi t al s
100%
Mor et han50c onsul t spermont h
100%
OVERAL L
58%
Hi l l sbor oughCount y
46% 43%
L TC-Nur si ngHomes 0%
10%
20%
30%
40%
50%
60%
70%
80%
90%
100%
E i g ht y t hr e epe r c e ntofr e s ponde nt ss a yaphy s i c i a ni spa r toft hepa l l i av ec a r et e a mi nt he i ror g a ni z a on, 78%i nc l udeanur s e pr a c one r , 75%i nc l udeapa s t or a l / s pi r i t ua l c a r epr ov i de r , 73%i nc l udear e g i s t e r e dnur s e( RN) , 69%i nc l udea na dmi ni s t r av e s uppor te mpl oy e e , 56%i nc l udeas oc i a l wor k e rMS W, 48%i nc l udeas oc i a l wor k e rL I CS W, 42%i nc l udeas oc i a l wor k e rBS W, 21%i nc l udea ni nt e g r a t e dt he r a pi e spr a c one r , a nd44%i nc l udea ne mpl oy e ei na not he rr ol e . Fi gur e8a:Whi c hoft hef ol l owi ngposi t i onsmakeupt hepal l i at i vec ar et eam i nyouror gani z at i on? Physi c i an
83%
17%
78%
Nur sePr ac t i t i oner
23%
75%
Past or al / Spi r i t ualc ar epr ovi der
25%
73%
Regi st er ednur se( RN)
27%
69%
Admi ni st r at i veSuppor t
31%
56%
Soc i alwor ker ,MSW
44%
48%
Soc i alwor ker ,LI CSW
52%
42%
Soc i alwor ker ,BSW
58%
21%
I nt egr at edTher api espr ac t i t i oner
79% 44%
Ot her 0%
10%
20%
56% 30%
40%
50%
Yes
60%
70%
80%
90%
100%
No
• Re s ponde nt swhos eor g a ni z a onpr ov i de smor et ha n50c ons ul t spe rmont ha ndt hos ewhos eor g a ni z a oni sahos pi t a l a r e mor el i k e l yt ha not he r st oi nc l udeanur s epr a c one ront he i rpa l l i av ec a r et e a m. • Re s ponde nt swhos eor g a ni z a onpr ov i de s10t o50c ons ul t spe rmont ha r emor el i k e l yt ha not he r st oi nc l udear e g i s t e r e d nur s eont he i rpa l l i av ec a r et e a m. • Re s ponde nt swhos eor g a ni z a oni sl oc a t e di nHi l l s bor oug hCount ya ndt hos ewhos eor g a ni z a onpr ov i de smor et ha n50 c ons ul t spe rmont ha r emor el i k e l yt ha not he r st oi nc l udea dmi ni s t r av es uppor tont he i rpa l l i av ec a r et e a m. Fi gur e8b:Posi t i onsonPal l i at i veCar eTeam -byDemogr aphi c s Nur s epr a c one r Mor et han50c onsul t spermont h
100%
Hospi t al s
100%
OVERALL
78%
Re g i s t e r e dnur s e( RN) 10t o50c onsul t spermont h
90%
OVERALL
73%
Admi ni s t r av eS uppor t Hi l l sbor oughCount y
90%
Mor et han50c onsul t spermont h
88%
OVERALL
69% 0%
10%
20%
30%
40%
50%
60%
70%
80%
90%
100%
T we nt y t hr e epe r c e ntofr e s ponde nt ss a yt he i ror g a ni z a onha sar e g i s t e r e dnur s e( RN)de di c a t e dt opa l l i av ec a r e , 20%ha v ea de di c a t e dnur s epr a c one r , 15%ha v eade di c a t e dphy s i c i a n, 13%ha v ede di c a t e da dmi ni s t r av es uppor t , a nd13%ha v ea de di c a t e ds oc i a l wor k e rBS W. E l e v e npe r c e ntofr e s ponde ntha v eas oc i a l wor k e rMS W de di c a t e dt opa l l i av ec a r e , 10%ha v ea de di c a t e dpa s t or a l ors pi r i t ua l c a r epr ov i de r , 8%ha v eade di c a t e ds oc i a l wor k e rL I CS W, 1%ha v eade di c a t e dI nt e g r a t e d T he r a pi e spr a c one r , a nd4%ha v ea not he rt y peofde di c a t e de mpl oy e ea spa r tort he i rpa l l i av ec a r et e a m. T hi r t y onepe r c e ntofr e s ponde nt ss a yt he i ror g a ni z a onha saphy s i c i a nont he i rpa l l i av ec a r et e a ms ha r e dwi t hot he r de pa r t me nt s , 21%ha v eas ha r e dr e g i s t e r e dnur s e( RN) , 21%ha v eas ha r e dnur s epr a c one r , 20%ha v eas ha r e d pa s t or a l / s pi r i t ua l c a r epr ov i de r , 18%ha v es ha r e da dmi ni s t r av es uppor t , 15%ha v eas ha r e ds oc i a l wor k e rMS W, 13%ha v ea s ha r e ds oc i a l wor k e rBS W, 13%ha v eas ha r e ds oc i a l wor k e rL I CS W, 6%ha v eas ha r e dI nt e g r a t e dT he r a pi e spr a c one r , a nd6% ha v ea not he rt y peofs ha r e de mpl oy e ea spa r toft he i rpa l l i av ec a r et e a m. T hi r t e e npe r c e ntofr e s ponde nt ss a yt he i ror g a ni z a onha sapa s t or a l / s pi r i t ua l c a r epr ov i de ront he i rpa l l i a i t v ec a r et e a mwho i sout s i dec ont r a c t e d, 11%ha v ea nout s i dec ont r a c t e dphy s i c i a n, 8%ha v ea nout s i dec ont r a c t e dr e g i s t e r e dnur s e( RN) , 7%ha v e a nout s i dec ont r a c t e dnur s epr a c one r , 7%ha v ea nout s i dec ont r a c t e ds oc i a l wor k e rL I CS W, 4%ha v ea nout s i dec ont r a c t e d I nt e g r a t e dT he r a pi e spr a c one r , 4%ha v ea nout s i dec ont r a c t e ds oc i a l wor k e rMS W, 3%ha v eout s i dec ont r a c t e d a dmi ni s t r av es uppor t , a nd1%ha v ea not he rt y peofout s i dec ont r a c t e de mpl oy e ea spa r toft he i rpa l l i av ec a r et e a m. Fi gur e9a:Whi c hoft hef ol l owi ngposi t i onsmakeupt hepal l i at i vec ar et eam i nyouror gani z at i onandi st hei r posi t i ondedi c at edt opal l i at i vec ar e?( Sel ec tal lt hatappl y) Regi st er ed nur se( RN)
Dedi c at ed
23%
Shar ed
21%
Out si deCont r ac t ed Nur se pr ac t i t i oner
8%
Dedi c at ed
20%
Shar ed
21%
Out si deCont r ac t ed Physi c i an
7%
Dedi c at ed
15%
Shar ed
31%
Out si deCont r ac t ed
11%
Admi ni st r at i ve Dedi c at ed Suppor t Shar ed
13% 18%
Out si deCont r ac t ed
3%
Soc i alwor ker , Dedi c at ed BSW Shar ed
13% 13%
Soc i alwor ker , Dedi c at ed MSW Shar ed
11% 15%
Out si deCont r ac t ed Past or al / Spi r i t ualc ar e pr ovi der
4%
Dedi c at ed
10%
Shar ed
20%
Out si deCont r ac t ed
13%
Soc i alwor ker , Dedi c at ed LI CSW Shar ed
8% 13%
Out si deCont r ac t ed
7%
I nt egr at ed Ther api es pr ac t i t i oner
Dedi c at ed Out si deCont r ac t ed
4%
Ot her
Dedi c at ed
4%
1%
Shar ed
6%
Shar ed Out si deCont r ac t ed
6% 1% 0%
5%
10%
15%
20%
25%
30%
35%
40%
45%
50%
• Re s ponde nt swhos eor g a ni z a onpr ov i de s10t o50c ons ul t spe rmont ha r emor el i k e l yt ha not he r st oha v eade di c a t e d r e g i s t e r e dnur s eont he i rpa l l i av ec a r et e a m. • Re s ponde nt swhos eor g a ni z a onpr ov i de smor et ha n50c ons ul t spe rmont ha ndt hos ewhos eor g a ni z a oni sl oc a t e di n Hi l l s bor oug hCount ya r emor el i k e l yt ha not he r st oha v eade di c a t e dnur s epr a c one ront he i rpa l l i av ec a r et e a m. • Re s ponde nt swhos eor g a ni z a onpr ov i de smor et ha n50c ons ul t spe rmont ha ndt hos ewhos eor g a ni z a oni sl oc a t e di n Hi l l s bor oug hCount ya r emor el i k e l yt ha not he r st oha v eade di c a t e dphy s i c i a nont he i rpa l l i av ec a r et e a m. Fi gur e9b:Posi t i onsDedi c at edt oPal l i at i veCar e-byDemogr aphi c s Re g i s t e r e dnur s e( RN) 10t o50c onsul t spermont h
46%
OVERALL
23%
Nur s epr a c one r Mor et han50c onsul t spermont h
55%
Hi l l sbor oughCount y
53%
OVERALL
20%
Phy s i c i a n Mor et han50c onsul t spermont h
36%
Hi l l sbor oughCount y
35%
OVERALL
15% 0%
10%
20%
30%
40%
50%
60%
70%
80%
90%
100%
Mor et ha nha l f( 53%)ofr e s ponde nt ss a yt ha ti nt he i ror g a ni z a onphy s i c i a nswhoa r eboa r dc e rfie di nHos pi c ea ndPa l l i av e Ca r e( H&PC)pr ov i det hei nia l a s s e s s me ntofpa e nt sr e f e r r e df orpa l l i av ec a r e , 22%s a ynonc e rfie dphy s i c i a nspe r f or mt hi s f uncon, a nd25%s a yphy s i c i a nsdonotpr ov i dei nia l pa l l i av ec a r ea s s e s s me nt si nt he i ror g a ni z a on. T hi r t y s e v e npe r c e nt s a yboa r dc e rfie dnur s epr a c one r spr ov i dei nia l pa l l i av ec a r ea s s e s s me nt si nt he i ror g a ni z a on, 37%s a ynonc e rfie d nur s epr a c one r spr ov i dei nia l a s s e s s me nt s , a nd26%s a ynur s epr a c one r sdonotpr ov i dei nia l a s s e s s me nt s . T we nt y ni ne pe r c e nts a yboa r dc e rfie dr e g i s t e r e dnur s e spr ov i dei nia l pa l l i av ec a r ea s s e s s me nt si nt he i ror g a ni z a on, 54%s a y nonc e rfie dr e g i s t e r e dnur s e spr ov i dei nia l a s s e s s me nt s , a nd17%s a yr e g i s t e r e dnur s e sdonotpr ov i dei nia l a s s e s s me nt s . S e v e nt ype r c e ntormor eofr e s ponde nt ss a ys oc i a l wor k e r sBS W( 74%) , s oc i a l wor k e r sMS W( 75%) , s oc i a l wor k e r sL I CS W( 77%) , ot he re mpl oy e e s( 78%) , pa s t or a l / s pi r i t ua l c a r epr ov i de r s( 79%) , ori nt e g r a t e dt he r a pi e spr a c one r s( 91%)donotpr ov i de i nia l pa l l i av ec a r ea s s e s s me nt si nt he i ror g a ni z a on. Fi gur e10a:Whopr ovi dest hei ni t i alassessmentofpat i ent sr ef er r edf orpal l i at i vec ar eandar et heyBoar d Cer t i f i edi nHospi c eandPal l i at i veCar e( H&PC) ? Physi c i an
53%
Nur sepr ac t i t i oner
37%
Regi st er ednur se( RN)
11%
Past or al / Spi r i t ualc ar epr ovi der
8%
I nt egr at edTher api espr ac t i t i oner
9%
4%
78%
17%
75%
13%
79% 91%
Soc i alwor ker ,BSW
26% 0%
17% 77%
11%
8%
26%
54%
19%
Ot her
25%
37%
29%
Soc i alwor ker ,LI CSW
Soc i alwor ker ,MSW
22%
10%
74% 20%
30%
40%
50%
60%
70%
80%
90%
100%
Doesnotpr ovi dei ni t i alassessment s Pr ovi desi ni t i alassessment-NotBoar dCer t i f i edi nH&PC Pr ovi desi ni t i alassessment-I sBoar dCer t i f i edi nH&PC
• Re s ponde nt swhos eor g a ni z a oni sahos pi t a l a ndt hos ewhos eor g a ni z a onpr ov i de smor et ha n50c ons ul t spe rmont ha r e mor el i k e l yt ha not he r st os a yboa r dc e rfie dphy s i c i a nspr ov i dei nia l a s s e s s me nt sa tt he i ror g a ni z a on. • Re s ponde nt swhos eor g a ni z a oni sl oc a t e di nHi l l s bor oug hCount ya r emor el i k e l yt ha not he r st os a yboa r dc e rfie dnur s e pr a c one r spr ov i dei nia l a s s e s s me nt sa tt he i ror g a ni z a on. Fi gur e10b:Boar dCer t i f i edEmpl oyeesPr ovi di ngI ni t i alAssessment-byDemogr aphi c s Phy s i c i a n Hospi t al s
100%
Mor et han50c onsul t spermont h
86%
OVERALL
53%
Nur s epr a c one r Hi l l sbor oughCount y
64%
OVERALL
37% 0%
10%
20%
30%
40%
50%
60%
70%
80%
90%
100%
Whe na s k e da boutc onc e r nss t a ffi nt he i ror g a ni z a onmi g htha v ea boutor de r i ngpa l l i av ec a r es e r v i c e s , 30%ofr e s ponde nt s me n onaf e a rofups e ngt hepa e nta ndf a mi l y , 22%e a c hc i t ec onc e r nov e rt hea bi l i t yt opr ov i deout pa e nts e r v i c e sora l a c koff ol l owupi na nout pa e nts e ng , 15%a r ec onc e r ne da boutt hefina nc i a l bur de nont hepa e nta nd/ ort hepr og r a m, a nd13%a r ec onc e r ne dwi t hr e s pe c tt opr ov i de rbounda r i e s . F ie e npe r c e ntc i t ea not he rc onc e r na nd33%s a yt he i rs t a ffha v e noc onc e r nsor de r i ngpa l l i av ec a r es e r v i c e s . Fi gur e11:What ,i fany,ar et hec onc er nsofst af fi nyouror gani z at i onaboutor der i ngpal l i at i vec ar eser vi c es? ( Sel ec tal lt hatappl y) 30%
Fearofupset t i ngt hepat i entandf ami l y Abi l i t yt opr ovi deout pat i entser vi c es
22%
Lac koff ol l ow upi nout pat i entset t i ng
22% 15%
Conc er naboutf i nanc i albur denonpat i entand/ orpr ogr am
13%
Conc er nwi t hr espec tt opr ovi derboundar i es Ot her
15% 33%
Noneoft heAbove 0%
5%
10%
15%
20%
25%
30%
35%
40%
45% 50%
S i x t y fiv epe r c e ntofr e s ponde nt ss a yt he i ror g a ni z a ons uppor t st hos epr ov i di ngpa l l i av ec a r es e r v i c e st hr oug hapa r t ne r s hi p wi t hc ommuni t yhos pi c es e r v i c e sorpr ov i de r s , 50%pr ov i dea dv a nc e dc a r epl a nni ngi nia v e s , 46%pr ov i dei nt e r na l e duc a on oppor t un e s , 43%pr ov i dede di c a t e ds t a ff, 26%pr ov i defloa ngs t a fff r omot he rde pa r t me nt s , 26%pa yf ore x t e r na l e duc a on oppor t unie s , a nd17%dos ome t hi nge l s e . Fi gur e12a:How doesyouror gani z at i onsuppor tt hosepr ovi di ngpal l i at i vec ar eser vi c es?( Sel ec tal lt hat appl y) Par t ner shi pwi t hc ommuni t yhospi c eser vi c es/ pr ovi der
65%
Advanc edc ar epl anni ngi ni t i at i ves
50%
I nt er naleduc at i onoppor t uni t i es
46%
Pr ovi di ngdedi c at edst af f
43%
Pr ovi di ngf l oat i ngst af ff r om ot herdepar t ment s
26%
Payi ngf orext er naleduc at i onoppor t uni t i es
26%
Ot her
17% 0%
10%
20%
30%
40%
50%
60%
70%
80%
90%
• Re s ponde nt swhos eor g a ni z a oni sahos pi c eorac a nc e rc e nt e ra r el e s sl i k e l yt ha not he r st os a yt he i ror g a ni z a on s uppor t st hos epr ov i di ngpa l l i av ec a r es e r v i c e st hr oug hapa r t ne r s hi pwi t hc ommuni t yhos pi c es e r v i c e s / pr ov i de r . • Re s ponde nt swhos eor g a ni z a onpr ov i de s10t o50c ons ul t spe rmont ha ndt hos ewhos eor g a ni z a oni sa nL T C-nur s i ng homea r emor el i k e l yt ha not he r st os a yt he i ror g a ni z a ons uppor t st hos epr ov i di ngpa l l i av ec a r es e r v i c e st hr oug h a dv a nc e dc a r epl a nni ngi nia v e s . Fi gur e12b:Or gani z at i onalSuppor tf orPal l i at i veCar eSer vi c es-byDemogr aphi c s Pa r t ne r s hi pwi t hc ommuni t yhos pi c es e r v i c e s / pr ov i de r OVERALL
65%
Hospi c e
36%
Canc erCent er s
29%
Adv a nc e dc a r epl a nni ngi nia v e s 10t o50c onsul t spermont h
89%
LTC-Nur si ngHomes
70%
OVERALL
50% 0%
10%
20%
30%
40%
50%
60%
70%
80%
90%
100%
T hi r t y s i xpe r c e ntofr e s ponde nt ss a yt he i ror g a ni z a ont r a c k squa l i t yme a s ur e sr e l a t e dt opa l l i av ec a r e . F or t ype r c e nts a y t he ydonott r a c kt he s eme a s ur e sa nd24%don' tk nowora r euns ur e . Fi gur e13a:I syouror gani z at i ont r ac ki ngqual i t ymeasur esr el at edt opal l i at i vec ar e? OVERAL L
36% 0%
10%
40%
20%
30%
40%
Yes
50%
24% 60%
70%
No
80%
90%
100%
Don' tknow/ Notsur e
• Re s ponde nt swhos eor g a ni z a onpr ov i de smor et ha n50c ons ul t spe rmont ha r emor el i k e l yt ha not he r st os a yt he i r or g a ni z a ont r a c k squa l i t yme a s ur e sr e l a t e dt opa l l i av ec a r e . Fi gur e13b:Or gani z at i onTr ac ki ngPal l i at i veCar eQual i t yMeasur es-byDemogr aphi c s Y e s Mor et han50c onsul t spermont h
67%
OVERALL
36% 0%
10%
20%
30%
40%
50%
60%
70%
80%
90%
100%
Mor et ha nha l f( 56%)ofr e s ponde nt ss a yt he i ror g a ni z a onoffe r si ns e r v i c epr og r a mst oi nc r e a s es t a ffa wa r e ne s sore duc a on a boutpa l l i av ec a r ea tl e a s tt wi c e( 16%)ora tl e a s tonc epe ry e a r( 40%) . Ni nepe r c e ntoffe rpr og r a msa tl e a s tonc ee v e r yot he r y e a r , 11%dos ol e s st ha ne v e r yt woy e a r s , 9%donotoffe rt he s epr og r a msa ta l l , a nd16%ha v ea not he ra r r a ng e me ntf or i ns e r v i c epr og r a ms . Fi gur e14a:How of t endoesyouror gani z at i onof f eri nser vi c epr ogr amst oi nc r easest af f awar eness/ educ at i onaboutpal l i at i vec ar e? 16%
OVERAL L
0%
40%
10%
20%
30%
40%
50%
9%
11%
9%
16%
60%
70%
80%
Atl eastt wi c eayear
Atl eastonc eever yot heryear
Notof f er ed
All eastonc eayear
Lesst hanever yt woyear s
Ot her
90%
100%
• Re s ponde nt swhos eor g a ni z a onpr ov i de smor et ha n50c ons ul t spe rmont ha r emor el i k e l yt ha not he r st os a yt he i r or g a ni z a onoffe r si ns e r v i c epr og r a mst oi nc r e a s es t a ffa wa r e ne s s / e duc a ona boutpa l l i av ec a r ea tl e a s tonc eora tl e a s t t wi c epe ry e a r . Fi gur e14b:Fr equenc yOf f er i ngI nSer vi c eAwar eness/ Educ at i onPr ogr ams-byDemogr aphi c s " Atl e a s tonc eay e a r "or" Atl e a s tt wi c eay e a r " 10t o50c onsul t spermont h
89%
OVERALL
56% 0%
10%
20%
30%
40%
50%
60%
70%
80%
90%
100%
Cos t Rec over y Mor et ha nha l f( 52%)ofr e s ponde nt ss a yt he yc ov e rt hec os toft he i rpa l l i av ec a r es e r v i c e st hr oug hc l a i mss ubmi s s i on, 17% e mpl oyc os ta v oi da nc e , 15%us ephi l a nt hr opy , 7%us eg r a nt s , a nd28%us ea not he rme a nsf orc ov e r i ngc os t s . Fi gur e15a:How doyouc overt hec ostofyourpal l i at i vec ar eser vi c es?( Sel ec tal lt hatappl y) 52%
Cl ai mssubmi ssi on Costavoi danc e
17%
Phi l ant hr opy
15%
Gr ant s
7%
Ot her
28% 0%
10%
20%
30%
40%
50%
60%
70%
80%
90%
100%
• Re s ponde nt swhos eor g a ni z a onpr ov i de smor et ha n10c ons ul t spe rmont ha ndt hos ewhos eor g a ni z a oni sahos pi t a l a r e mor el i k e l yt ha not he r st oc ov e rt hec os toft he i rpa l l i av ec a r es e r v i c e st hr oug hc l a i mss ubmi s s i on. Fi gur e15b:MeansCover i ngPal l i at i veCar eCost s-byDemogr aphi c s Cl a i mss ubmi s s i on Hospi t al s
86%
10t o50c onsul t spermont h
78%
Mor et han50c onsul t spermont h
78%
OVERALL
52% 0%
10%
20%
30%
40%
50%
60%
70%
80%
90%
100%
F or t y onepe r c e ntofr e s ponde nt ss a yt he i ror g a ni z a onbi l l sf oraphy s i c i a nc ons ul t , 35%bi l l f ora nAPRNc ons ul t , 15%bi l l f or s oc i a l wor k e rs e r v i c e s , 13%bi l l f ora na dv a nc e dc a r epl a nni ngc onv e r s a on, 4%bi l l f ors ha r e dde c i s i onma k i ng , a nd22%bi l l f or a not he rs e r v i c e . Fi gur e16a:Forwhi c hoft hef ol l owi ngpal l i at i vec ar eser vi c esdoesyouor gani z at i onbi l l ?( Sel ec tal lt hat appl y) Physi c i anConsul t
41%
APRNConsul t
35%
Soc i alWor kerSer vi c es
15% 13%
Advanc edCar ePl anni ngConver sat i on 4%
Shar edDec i si onMaki ng
22%
Ot her 0%
10%
20%
30%
40%
50%
60%
70%
80%
90%
100%
• Re s ponde nt swhos eor g a ni z a onpr ov i de smor et ha n50c ons ul t spe rmont ha r emor el i k e l yt ha not he r st obi l l f ora phy s i c i a nc ons ul t . • Re s ponde nt swhos eor g a ni z a onpr ov i de smor et ha n50c ons ul t spe rmont ha r emor el i k e l yt ha not he r st obi l l f ora nAPRN c ons ul t . Fi gur e16b:Ser vi c esBi l l edbyOr gani z at i on-byDemogr aphi c s Phy s i c i a nCons ul t Mor et han50c onsul t spermont h
78%
OVERAL L
41%
APRNCons ul t Mor et han50c onsul t spermont h
100%
OVERAL L
35% 0%
10%
20%
30%
40%
50%
60%
70%
80%
90%
100%
Ne a r l yt hr e e qua r t e r s( 73%)ofr e s ponde nt ss t r ong l ya g r e et ha tpr i v a t ei ns ur a nc epr ov i de r sne e dt obee duc a t e da bout pa l l i av ec a r es e r v i c e s , 13%s ome wha ta g r e ewi t ht hi ss t a t e me nt , a nd13%ne i t he ra g r e enordi s a g r e e . Nor e s ponde nt s s ome wha tors t r ong l ydi s a g r e ewi t ht hi ss t a t e me nt . Fi gur e17:Pl easei ndi c at et heext entt owhi c hyouagr eewi t ht hef ol l owi ngst at ement :Pr i vat ei nsur anc e pr ovi der sneedt obeeduc at edaboutpal l i at i vec ar eser vi c es 73%
OVERAL L 0%
10%
20%
30%
13%
40%
50%
60%
St r ongl yAgr ee
Nei t herAgr eenorDi sagr ee
SomewhatAgr ee
SomewhatDi sagr ee
70%
13%
80%
90%
100%
St r ongl yDi sagr ee
F or t y onepe r c e ntofr e s ponde nt ss a yt he i ror g a ni z a one x pe r i e nc e spr obl e mswi t hr e i mbur s e me ntf ors e r v i c e s , 26%ha v e pr obl e mswi t ht he i rs t a ffinge x pe ns e , 22%c i t eal a c kofa dmi ni s t r a ons uppor t , 20%ha v ea not he rf undi ng r e l a t e dc ha l l e ng e , . . Fi gur e18a:Whi c hoft hef ol l owi ngc hal l engesr el at edt ot hef undi ngpal l i at i vec ar eser vi c esdoesyour or gani z at i onexper i enc e?( Sel ec tal lt hatappl y) 41%
Rei mbur sementf orser vi c es 26%
St af f i ngexpense 22%
L ac kofadmi ni st r at i onsuppor t Ot her
20%
Myor gani z at i onhasnoc hal l engeswi t hf undi ng
28% 0%
5%
10%
15%
20%
25%
30%
35%
40%
45%
50%
• Re s ponde nt swhos eor g a ni z a onpr ov i de smor et ha n50c ons ul t spe rmont ha ndt hos ewhos eor g a ni z a oni sahos pi c ea r e mor el i k e l yt ha not he r st os a yt he yha v epr obl e mswi t hr e i mbur s e me ntf ors e r v i c e s . • Re s ponde nt swhos eor g a ni z a oni saL T C-nur s i nghomea r emor el i k e l yt ha not he r st os a yt he i ror g a ni z a onha sno c ha l l e ng e swi t hf undi ng . Fi gur e18b:Pal l i at i veCar eFundi ngChal l enges-byDemogr aphi c s Re i mbur s e me ntf ors e r v i c e s Mor et han50c onsul t spermont h
78%
Hospi c e
73%
OVERAL L
41%
Myor g a ni z a onha snoc ha l l e ng e swi t hf undi ng L TC-Nur si ngHomes
60%
OVERAL L
28% 0%
10%
20%
30%
40%
50%
60%
70%
80%
90%
100%
St af f and Ret ent i on Mor et ha none t hi r d( 35%)ofr e s ponde nt ss a yt he i ror g a ni z a one x pe r i e nc e sc ha l l e ng e swi t hfindi ngs t a ffwi t hr e l a t e dwor k e x pe r i e nc e , 20%f a c ec ha l l e ng e swi t hal a c kofc ompe v ec ompe ns a on, 13%c i t ec ha l l e ng e swi t hbur nout , 26%c i t ea not he r s t a ffr e l a t e dc ha l l e ng e , a nd24%s a yt he yf a c enoc ha l l e ng e sfindi ng , t r a i ni ng , a ndr e t a i ni ngqua l i fie dpa l l i av ec a r es t a ff. Fi gur e19a:Whi c hoft hef ol l owi ngc hal l engesdoesyouor gani z at i onexper i enc er el at edt of i ndi ng,t r ai ni ng, andr et ai ni ngqual i f i edpal l i at i vec ar est af f ?( Sel ec tal lt hatappl y) 35%
Rel at edwor kexper i enc e L ac kofc ompet i t i vec ompensat i on
20%
Bur nout
13%
Ot her
26%
Myor gani z at i onhasnoc hal l engeswi t hst af f
24% 0%
10%
20%
30%
40%
50%
60%
70%
80%
90% 100%
• Re s ponde nt swhos eor g a ni z a onpr ov i de s10t o50c ons ul t spe rmont ha ndt hos ewhos eor g a ni z a oni sahos pi c ea r e mor el i k e l yt ha not he r st os a yt he i ror g a ni z a one x pe r i e nc e sc ha l l e ng e swi t hfindi ngs t a ffwi t hr e l a t e dwor ke x pe r i e nc e . Fi gur e19b:Pal l i at i veCar eSt af f i ngChal l enges-byDemogr aphi c s Re l a t e dwor ke x pe r i e nc e 10t o50c onsul t spermont h
78%
Hospi c e
55%
OVERALL
35% 0%
10%
20%
30%
40%
50%
60%
70%
80%
90%
100%
Pal l i at i ve Car e I nf or mat i on T hr e ei nfiv er e s ponde nt s( 61%)pr ov i dei nf or ma ononpa l l i av ec a r et opa e nt swhe nc ur av ec a r ei snol ong e ri ndi c a t e d, 52%pr ov i dei nf or ma onwhe nt hepa e ntha sunc ont r ol l a bl es y mpt oms , 52%whe nt hepa e ntha sac ha ng ei nc ondion, 46% whe napa e nti sr e f e r r e dt oahos pi c e , 37%a tt he meofat e r mi na l di a g nos i s , 17%a tfir s tc ont a c t , 15%a tt hebe g i nni ngof t r e a t me nt , a nd13%a tt he meofac a nc e rdi a g nos i s . F ourpe r c e ntofr e s ponde nt ss a yt he ydonotpr ov i dei nf or ma ona nd 17%s a yi nf or ma oni spr ov i de da ta not he rpe r i od. Fi gur e20a:Wheni spal l i at i vec ar ei nf or mat i ongi vent opat i ent s?( Sel ec tal lt hatappl y) Whenc ur at i vec ar ei snol ongeri ndi c at ed
61%
Whent her ear eunc ont r ol l abl esympt oms
52%
Changei nc ondi t i on
52%
Hospi c er ef er r al
46%
Att het i meofat er mi naldi agnosi s
37% 17%
Atf i r stc ont ac t Begi nni ngoft r eat ment
15%
Att het i meofac anc erdi agnosi s
13%
Noi nf or mat i oni sgi ven
4%
Ot her
17% 0%
10%
20%
30%
40%
50%
60%
70%
80%
90% 100%
• Re s ponde nt swhos eor g a ni z a oni sac a nc e rc e nt e ra r emor el i k e l yt ha not he r st os a yt he i ror g a ni z a ong i v e si nf or ma on a boutpa l l i av ec a r et opa e nt swhe nt hepa e ntha sunc ont r ol l a bl es y mpt oms . • Re s ponde nt swhos eor g a ni z a oni sac a nc e rc e nt e ra ndt hos ewhos eor g a ni z a onpr ov i de smor et ha n50c ons ul t spe r mont ha r emor el i k e l yt ha not he r st os a yt he i ror g a ni z a ong i v e si nf or ma ona boutpa l l i av ec a r et opa e nt swhe nt he pa e ntha sac ha ng ei nc ondion. • Re s ponde nt swhos eor g a ni z a oni sl oc a t e di nNor t he r nNHa r emor el i k e l yt ha not he r st os a yt he i ror g a ni z a ong i v e s i nf or ma ona boutpa l l i av ec a r ewhe nt hepa e nti sr e f e r r e dt oahos pi c e . Fi gur e20b:WhenPal l i at i veCar eI nf or mat i onGi vent oPat i ent s-byDemogr aphi c s Whe nt he r ea r eunc ont r ol l a bl es y mpt oms Canc erCent er s
86%
OVERALL
52%
Cha ng ei nc ondion Canc erCent er s
86%
Mor et han50c onsul t spermont h
67%
OVERALL
52%
Hos pi c er e f e r r a l Nor t her nNH
80%
OVERALL
46% 0%
10%
20%
30%
40%
50%
60%
70%
80%
90%
100%
Mor et ha nt hr e e qua r t e r s( 79%)ofr e s ponde nt spr ov i dei nf or ma ona boutpa l l i av ec a r es e r v i c e sdi r e c t e dt owa r dse duc a ng nonc a nc e rpa e nt si nne e dofpa l l i av ec a r es e r v i c e s , whi l e78%pr ov i des uc hi nf or ma ondi r e c t e dt owa r dc a nc e rpa e nt s . Mor et ha nha l f( 58%)pr ov i det hi si nf or ma ondi r e c t e dt owa r dsf a mi l yme mbe r si nne e dofpa l l i av ec a r es e r v i c e s , whi l ev e r y f e w( 9%)pr ov i des uc hi nf or ma ondi r e c t e dt owa r dsc hi l dr e ni nne e dofpa l l i av ec a r es e r v i c e s . Fi gur e21a:Doesyouror gani z at i onpr ovi dei nf or mat i onaboutpal l i at i vec ar eser vi c esdi r ec t edt owar d educ at i ngeac hoft hef ol l owi nggr oups. . . Nonc anc erpat i ent si nneedof pal l i at i vec ar eser vi c es
79%
14%
7%
Canc erpat i ent s
78%
16%
7%
Fami l ymember si nneedof pal l i at i vec ar eser vi c es
58%
Chi l dr eni nneedofpal l i at i vec ar e ser vi c es
35%
9%
7%
79%
0%
10%
20%
30%
Yes
40%
12%
50%
60%
No
70%
80%
90%
100%
Don' tknow
• Re s ponde nt swhos eor g a ni z a oni sahos pi t a l a ndt hos ewhos eor g a ni z a onpr ov i de smor et ha n50c ons ul t spe rmont ha r e mor el i k e l yt ha not he r st os a yt he i ror g a ni z a onpr ov i de si nf or ma ona boutpa l l i av ec a r edi r e c t e dt owa r dse duc a ng nonc a nc e rpa e nt si nne e dofpa l l i av ec a r es e r v i c e s . • Re s ponde nt swhos eor g a ni z a oni sahos pi t a l orac a nc e rc e nt e ra ndt hos ewhos eor g a ni z a onpr ov i de smor et ha n50 c ons ul t spe rmont ha r emor el i k e l yt ha not he r st os a yt he i ror g a ni z a onpr ov i de si nf or ma ona boutpa l l i av ec a r edi r e c t e d t owa r dsc a nc e rpa e nt s . T hos ewhos eor g a ni z a oni saL T C-nur s i nghomea r el e s sl i k e l yt opr ov i det hi sk i ndof i nf or ma on. • Re s ponde nt swhos eor g a ni z a onpr ov i de smor et ha n10c ons ul t spe rmont ha ndt hos ewhoor g a ni z a oni sac a nc e rc e nt e r a r emor el i k e l yt ha not he r st os a yt he i ror g a ni z a onpr ov i de si nf or ma ona boutpa l l i av ec a r edi r e c t e dt owa r dse duc a ng f a mi l yme mbe r si nne e dofpa l l i av ec a r es e r v i c e . Fi gur e21b:Or gani z at i onPr ovi desI nf or mat i onDi r ec t edTowar dsFol l owi ngGr oups-byDemogr aphi c s Nonc a nc e rpa e nt si nne e dofpa l l i av ec a r es e r v i c e s Hospi t al s
100%
Mor et han50c onsul t spermont h
100%
OVERALL
79%
Ca nc e rpa e nt s Hospi t al s
100%
Mor et han50c onsul t spermont h
100%
Canc erCent er s
100%
OVERALL
78% 60%
LTC-Nur si ngHomes
F a mi l yme mbe r si nne e dofpa l l i av ec a r es e r v i c e s Mor et han50c onsul t spermont h
100%
Canc erCent er s
100%
10t o50c onsul t spermont h
78%
OVERALL
58% 0%
10%
20%
30%
40%
50%
60%
70%
80%
90%
100%
E i g ht y t hr e epe r c e ntofr e s ponde nt sr e por tt he i ror g a ni z a onpr ov i de spr i nt e di nf or ma onf ora dv a nc ec a r epl a nni ng , 70% pr ov i depr i nt e di nf or ma onf org e ne r a l i nf or ma ona boutpa l l i av ec a r e , 57%f orpa i na nds y mpt omma na g e me nt , 50%f or ps y c hos oc i a l a nde mo ona l a s pe c t sofa dv a nc e ddi s e a s e , a nd43%f ort hes pi r i t ua l a s pe c t sofa dv a nc e ddi s e a s e . E i g ht y ni nepe r c e ntofr e s ponde nt sr e por tt he i ror g a ni z a onpr ov i de sv e r ba l i nf or ma ona boutps y c hos oc i a l a nde mo ona l a s pe c t sofa dv a nc e ddi s e a s e , 89%dos of orpa i na nds y mpt omma na g e me nt , 85%dos of org e ne r a l i nf or ma ona boutpa l l i av e c a r e , 78%dos of ors pi r i t ua l a s pe c t sofa dv a nc e ddi s e a s e , a nd78%dos of ora dv a nc ec a r epl a nni ng . Re l av e l yf e wr e s ponde nt spr ov i dei nf or ma ona boutpa l l i av ec a r ei s s ue sv i ai nt e r ne tl i nk sort hr oug ha udi o/ v i s ua l i nf or ma on. As ma l l numbe rofr e s ponde nt ss a yt he i ror g a ni z a onsdonotoffe ri nf or ma onont he s ei s s ue s , t hel a r g e s tbe i ng s pi r i t ua l a s pe c t sofa dv a nc e da g e , i nf or ma onf orwhi c hi snotpr ov i de di na nyme di umby13%ofr e s ponde nt s . Fi gur e22:How doesyouror gani z at i onof f eri nf or mat i ont opat i ent sont hef ol l owi ngi ssues?( Sel ec tal lt hat appl y) Advanc ec ar epl anni ng
Pr i nt edi nf or mat i on
83%
Ver bal l ygi veni nf or mat i on
78%
Gi veni nt er netl i nks
17%
Gi venaudi o/ vi suali nf or mat i on Doesnotof f er
11% 2%
Gener ali nf or mat i onabout Pr i nt edi nf or mat i on pal l i at i vec ar e Ver bal l ygi veni nf or mat i on
70% 85%
Gi veni nt er netl i nks
15%
Gi venaudi o/ vi suali nf or mat i on Doesnotof f er Pai nandsympt om managment
4% 2%
Pr i nt edi nf or mat i on
57%
Ver bal l ygi veni nf or mat i on
89%
Gi veni nt er netl i nks
13%
Gi venaudi o/ vi suali nf or mat i on
4%
Ot her Doesnotof f er Psyc hosoc i aland emot i onalaspec t sof advanc eddi sease
4% 2%
Pr i nt edi nf or mat i on
50%
Ver bal l ygi veni nf or mat i on
89%
Gi veni nt er netl i nks
13%
Gi venaudi o/ vi suali nf or mat i on
Spi r i t ualaspec t sof advanc eddi sease
4%
Ot her
2%
Doesnotof f er
2%
Pr i nt edi nf or mat i on
43%
Ver bal l ygi veni nf or mat i on
78%
Gi veni nt er netl i nks
7%
Gi venaudi o/ vi suali nf or mat i on Ot her
4% 2%
Doesnotof f er
13% 0%
10%
20%
30%
40%
50%
60%
70%
80%
90% 100%
S i x t ype r c e ntormor eofr e s ponde nt ss a yt he ya r euna wa r eofe a c hoft hepoc k e tc a r dsde v e l ope dbyNHCCC/ NHHPOC Pa l l i av eCa r eT ool k i ti t e ms . S e v e nt e e npe r c e ntha v eus e dhos pi c ec r i t e r i apoc k e tc a r dsa nd22%ha v es e e nt he mbutnotus e d t he m, 20%ha v eus e dopi oi ddos a g eg ui de l i nepoc k e tc a r dsa nd18%ha v es e e nt he m, 16%ha v eus e da nd16%ha v es e e n nonpha r ma c ol og i c a l pa i nma na g e me ntr a c kc a r ds , a nd9%ha v eus e da nd17%ha v es e e ns pi r i t ua l di s t r e s spoc k e tc a r ds . Fi gur e23a:Haveyouusedorseenanyoft hef ol l owi ngpoc ketc ar dsdevel opedbyNHCCC/ NHHPCOPal l i at i ve Car eTool ki ti t ems? 17%
Hospi c ec r i t er i apoc ketc ar ds Opi oi ddosagegui del i nepoc ket c ar ds
22%
20%
Nonphar mac ol ogi c alpai n magagementr ac kc ar ds
18%
16% 9%
Spi r i t ualdi st r esspoc ketc ar ds
0%
61% 62%
16%
69%
16% 10%
20%
Used
75% 30%
40%
50%
60%
Seen
70%
80%
90%
100%
Di dn' tknow abouti t
• Re s ponde nt swhos eor g a ni z a onpr ov i de s10t o50c ons ul t spe rmont ha ndt hos ewhos eor g a ni z a oni sahos pi c ea r e mor el i k e l yt ha not he r st os a yt he yha v eus e dors e e nhos pi c ec r i t e r i apoc k e tc a r ds . • Re s ponde nt swhos eor g a ni z a oni sahos pi c eorahos pi t a l a ndt hos ewhos eor g a ni z a onpr ov i de s10t o50c ons ul t spe r mont ha r emor el i k e l yt ha not he r st os a yt he yha v eus e dors e e nopi oi ddos a g eg ui de l i nepoc k e tc a r ds . Fi gur e23b:UsedorSeenAnyoft heFol l owi ngPoc ketCar ds-byDemogr aphi c s Hos pi c ec r i t e r i apoc k e tc a r ds 10t o50c onsul t spermont h
78%
Hospi c e
73%
OVERAL L
39%
Opi oi ddos a g eg ui de l i nepoc k e tc a r ds Hospi c e
73%
10t o50c onsul t spermont h
67%
Hospi t al s
67%
OVERAL L
38% 0%
10%
20%
30%
40%
50%
60%
70%
80%
90%
100%
T we nt y t wope r c e ntofr e s ponde nt ss a yt he ya e nde dors e nts t a fft oa e ndt heNHHPCOPa l l i av eCa r eBi l l i ngWor k s hop, whi l e49%s a yt he ydi dnota nd29%we r euna wa r eoft hee v e nt . T hes a mepr oporonofr e s ponde nt ss a yt he ya e nde dors e nt s t a fft oa e ndt heNHHPCOHos pi c ea ndPa l l i av eCa r eRN/ L NACe rfic a onpr e pa r a onwor k s hop. Fi gur e24a:Haveyouat t endedorsentst af ft oanyoft hef ol l owi ngwor kshops? NHHPCOPal l i at i veCar eBi l l i ngWor kshop
22%
49%
29%
NHHPCOHospi c eandPal l i at i veCar eRN/ L NA Cer t i f i c at i onpr epar at i onwor kshop
22%
49%
29%
0%
10%
20%
Yes
30%
40%
50%
60%
No
70%
80%
90% 100%
Di dn' tknow abouti t
• Re s ponde nt swhos eor g a ni z a oni sahos pi c e , t hos ewhos eor g a ni z a onpr ov i de smor et ha n50c ons ul t spe rmont h, a nd t hos ewhos eor g a ni z a oni sl oc a t e di nt heCe nt r a l / L a k e sr e g i ona r emor el i k e l yt ha not he r st os a yt he ya e nde dors e nt s t a fft oa e ndt heNHHPCOPa l l i av eCa r eBi l l i ngwor k s hop. • Re s ponde nt swhos eor g a ni z a oni sahos pi c ea ndt hos ewhos eor g a ni z a onpr ov i de s10t o50c ons ul t spe rmont ha r e mor el i k e l yt ha not he r st os a yt he ya e nde dors e nts t a fft oa e ndt heNHHPCOHos pi c ea ndPa l l i av eCa r eRN/ L NA Ce rfic a onpr e pa r a onwor k s hop. Fi gur e24b:At t endedorSentSt af ft oFol l owi ngWor kshops-byDemogr aphi c s NHHPCOPa l l i av eCa r eBi l l i ngWor k s hop Hospi c e
55%
Mor et han50c onsul t spermont h
44%
Cent r al / L akes
44%
OVERALL
22%
NHHPCOHos pi c ea ndPa l l i av eCa r eRN/ L NACe rfic a onpr e pa r a onwor k s hop Hospi c e
60%
10t o50c onsul t spermont h
56%
OVERALL
22% 0%
10%
20%
30%
40%
50%
60%
70%
80%
90%
100%
T hev a s tma j or i t yofr e s ponde nt s( 80%)pr e f e rt or e c e i v eupda t e sf orbe s tpr a cc e sofpa l l i av ec a r ev i ae ma i l . S e v e npe r c e nt pr e f e rane ws l ee r , 4%awe bs i t e , 2%ma i l , 2%ame e ngorc onf e r e nc e , a nd4%woul dpr e f e rt or e c e i v eupda t e si na not he r wa y . Fi gur e25:How doyoupr ef ert or ec ei veupdat esf orbestpr ac t i c esofpal l i at i vec ar e? Emai l
80%
Newsl et t er
7%
Websi t e
4%
Mai l
2%
Meet i ng/Conf er enc e
2%
Ot her
4% 0%
10%
20%
30%
40%
50%
60%
70%
80%
90%
100%
