. Th c::oat. coaperiaon in t.bia at.at.eaent. i bat.ween t.be an coat. or VAia ua yd oyer report.eel in th regional ca .. atudi and tb AART coat .. t.iaat.a or all 99M o Y&Ia. The variation in t.b ... two coat t"igu.r .. could be due to t.h t.ot.al nuaber a* inat.it.ut.iona report.ing coat. dat.a. aa well aa variation in the 89 o th ventilator pat.ienta. What.ever t.he explanation or t.hia variation. t.h intent. 0 t.ha at.atuent wea not. to prove or to explain that older patient.a have higher coat.a than peraona under 6S. Thia at.at. .. ent cannot be aupported with data roa t.b~ at.udy. hal&o your c;ope1ya1on t.hat. ox" patient rec;e1v1n9 w;byical yept.111t.J.op E got. PFMHEily t.eraina11y 111 .. Can H9 zai, Mb\ E MB 11k9ly aed1c11 cond1t100 19acupa \o SihAt COPD. polio. ARDS. r .. piratory -1.ailur How y14uprud & \hi prac;t,1c;e, Cannot det.erain t"roa t.bia atudy. tr \b9H \b H 1nd1y1dyl n v cona1derec1 bl to so tmT Tbia ia a1199 .. tec1~ a.lt..bougb it. cannot. ba clearly proven by t.be dat.a. Th AART at.udy a*i'ered t.h nuaber o pat.ient.a d ... ed able t.o go boa i f'undi119 were available. but. gave no dia9noaea. Th ragional ca .. at.udi .. provided t.h diagnoaaa. but. not. clar1~icat.ion m wbicb patient.a or how aany patient.a c:ould be d ... ed able 1:.o 90 hoae.
PAGE 140
( (. : t '. i,', I .... 1111, ., ,.. o,\., ............. h I ...... _.. t 'I .. ,,- r' .,. '. Contraat 533-4935.0 Ooo~')f"'f t.hJ' PlH glagify xev st.t~1.111t.ign of .. YDi.nellJ!....ill.".!. Th d*init.ion uaed ia t.het fro Qecidina t.o For990 Lifsya\ain4p9 Tgeayant, t.be Praaident' Coaaiaaion for t.h Study o6 Etbicel Probl in Nedical and Bioaedical end Behavioral Reaeaa'cb. rah 1983. p. 25-26. Thia ia not. an 'ironclad ddinition', but one which vari according to th individual' condition, t.akin9 into conaideration the patient' aental capaat~y. will to live, exiet.enc of aupportive aa1ly and continuance fd a product.iv li with aec:banical iatance. Th --nee a t.h ning ia that. aechenical aaaiatance ia bein9 uaad t.o enhance lia not. 3uat. to "prolong death ... Qo a11 \b data you obta1nec1 fro tb Yt.ro 64oiatration rl1t. t.o th Chicago Y6? w. woyJd like 0 1nforaat.1on fro \h Y6 sntri 0ffic 11 w911, Ia t.h report, all t.h data waa roa t.b Veteran Adainia~ration in Chicago. Since the report we aubaitted. inoraa~ion on t.b VA dat.a eyat.ea baa been ob~ained ro th Veteran Adainiat.ration in Waahin9ton, D.C. Th data r led and c:ocled by diapCNMUI. Th patient racorda or patient.a age 65 and over who Y po~entially be VAia could be reviewed to iden~i~y how aany VAia exiat. Another option ~or collac:ting data would be t.o eurvey all th VA hoapitala uaing th re9ional data inventory. Bot.h option would require a great nuaber 0 aanpover houra. Th procedure to obtain thia in~oraation ia to cont.act Nr. Walters. Adainiatrat.or 0 VA ~air 810 Veraont Ave., N.W., Waahington. D.C. 20420. (202> 389-3781. Whrvr poaaibl, break data on tb ldrly 10\0 r apeci(ic 19 9EAMP, In Part II, Th Regional C Studi, there waa a total of 46 pat.ienta . Broken down by age, 21 were between 65 and 70. 19 were between 71 and 80, and 6 were 81 or older. With regard t.o th priaery diagno, a2.o-of t.h patient.a 65-70 were diagnoaad neurological/neuroauacular or reapirat.ory. In th 71-80 age range, 87.5-were diegno .. d neurol09ical/nauroauacular or reapiratory and 100 0 the patient.a age 81 and over had t.b diagnoaea. Regarding t.b eec:ondary diagno .. a, 57.1* 0 patient 65-70 had diagno of 'other' and 28.6-had reapirat.ory dia9no For patient age 71-80, 57~1-had reapiretory diagno and 28.6 had cardiac diagno .. a, while 75.o 0 th patient 81 and older bad cardiac diagno Th diagnoaea aoat coaaonly leadint to being vent.ilat.or a .. iat.ed or patient age 6S-70 were neurological/neuroauaauiar at 55.6 and were evenly ap~ead over t.h other diagnoaea. For patient.a 71-80, 40.0 bad cardiac diagno .. and 40.0 had neurological/nauroauacular d1no .. a. The diagnoaea or pat.tent.a 81 and over were evenly diat.ributed between 'other' and neurolo9ical/neur~auacuiar et. so.o-ch. 76
PAGE 141
( ( ( Contraot S83-493S.O 000338 Th.l"~~h 0 ti on th ventilator rang fro 13 daya or petienta age 67-70, fro 13-2277 deya or patient age 71-80 and froa 27-1825 daya or patient 81 and older. For patient 65-70, 31.3 were on th ventilator or on to three aontha and 37.S for 12 aontha or aore. 0 patient.a 71-80, 37.S were on the ventilator or on to thr aontba, 18.8 for thr .. to aix aontha, and 1a.e or aor than 12 aontha. r.ity percent 0 patient 81 and older were on th ntilator or one to tbr aontha. Th Jority 0 patient in each category were on th ventilator 23-24 hour, with 78.9 of t.ba patient 6~, 68.4 o th patient 71-80 and 100 of the patient 81 and older. Th aa3ority reapon or tb expected length 0 atay on th ventilator were #until death# and ieti, totaling 84.2 or patient 6S-70, 66.7 for patient 71-80 and 83.3 or patient a1end older. Since the overwhlin9 aa3ority of patient have Medicare and Xedicaid liat.ad aa their payaent aource, breakdown by age are not that inoraative. cap YAM MY 0re about coat born by priyat snci and f0vo41t1901t Th data coliec:ted do not reveal anything about th coata. I thr1 yidanc 0t r1\top1n97 vot od? or un,uatiftd YA9t In th data collected, there ia no evidence 0 rationing or unJuatified u ... With regard to unaet need, there ia evidence in Table 6, page 42 of Sept .. ber report Cnow page 44J, of waiting liat ~or ventilator, and the need or funding nd appropriate chronic care faciliti to adequately a .. t the need of thia population. on Daa 24. you rfr to propri9tary inforaation that w111 b ried \o At& when Mr11aa1on 11 rctv fro Irvo0i, What,. t;he 1\1\v Pf \hiat MEt data alao rsvtd frg th otbE so1a10,1 YAY s0o\s\d, 1,1, f0\r Nad1c11, Aaerican Abbey IA Q1r and aua11~y car9t , A ~ollow-up call~ aade to Jia Retel at Travenol. He .. 1d that 1 th inoraation would be uaed in th public doaain, they would not want it.releaaed, becau their. coapetition would have ace to it. However, i th inforaation would be uaed atrictly internally by Congr, then they would rel--it. Inoraation waa requeated roa roater Kedical, Aaerican Abbey Ho Car and Quality Care by telephone, however no oraal requt waa aad due to th tiae liaitation becauae it would take aeveral week to receive approval fro the adainiatretion to obtain th data and then ~o actually receive it. Qulity Care did not have acceaaibl data and would have to conduct a aurvy in order to provide data. 77
PAGE 142
iri?~;~:;.!f~!~,.-;. ..... ;; .. ~."'.:.~~-.... ;-:-................. .. .. Ul .... -i4.w.i.-""-".: .......... ~~;~,;;..; ... :-, .... .... ; .... ~~-:~" .. : ............................ -.--.. ................................ ...................... ...... -~ ..................... ........ z r :. ,.} :i-' _: :/. I ( { Con~raat, 533-4935.0 1. APPIIIDIJ A. IATIOIIAL DATA IIVEIITORY UIT SUIVIY a, VBITIUTOR ASSISTID IMDIVIDUALi 4Mt AMIH&MPliU at 9lblla [QB !IIIMmB &ml! -WI, !I.a. -ll!lalll! 2. 0 th bow n, are cared for in the: A. hoapital Mt.t.ing a. hoa aet.t.ia9 c. otber a. llbat. ta t.b ... brNkclown oft.be aullbera iDCliaatecl ia caueat.ion 1, a. 17 or ,oua1er 18 64 c. 65 older 000339 4. Pl .. liat, bf -p-oup, bow m, ventilator depeadt patient.a r cared for int.la lloapit.al N'ttiDf: a. 17 or ,oua1er ----------a. 18 64 ~-------------c. 65 older ---------S. I* reiabur-t were ilabl for hoM rendered Mntilat.or aupport, bow UT, bf -poup, would be able t.o take adantat tbia1 A. 17 or ,ounger 11 64 c. 65 older 6. Wbet ia t.be ._..,. il&II total ch_... 'to u ia-tba-boapital _pet.itmt. oil. MDtilatort ----7. lfllat ta Ula ._._ 191\bl! tot.el ahv .. Crupirator, plua non-rpiratorp related> 'to aa intlle-bolle pat.tt. on ventilator! --... 71
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,~ ......... ,.. ....... -...~ .. ---.................. ....... ....... ...,....-...... ~~111&.C, ............................. ....., ........................ .....,, .. .., .. IW-...__,._...._W .. _J.W.._ ......... _.,_h~M-aoW.._ 11 .... .._ 1111 ._. 111 .. ------- ji?. ......... o . .,.,,.~::r\l."''i'.~r" 0 O0O34D f< ('&ill rau.otDli usrUG US REQUESTED 01 1985 tuJtYr. C!IL':: ... Pl .... 0011pleta for __. faoilit.r aurv.,.a: u 2> I> 4) S> 6) 7> ., t> 10) Id l&H (~-la nf_.... to Gueatiou 6 & 7 lfbat. COllpDMDt.a are !Deluded ill t.be c:bal-9! u.e. MDt.11ator. reapirator, t.heraptat. Yiatt.a, _,..., etc.> I / I n.u ______ Collplet.ed bJ _________ Telepbone ______ ,('', ... '\, 79 \ /(II)
PAGE 144
r.,rr:--: ....... ,_ ........ -. .. ..... ............................ w ........ ,.. .......... -... -.................................................................... __ '.-'"'. ( ( APPDDII 8. IATIOIIAL DATA IIIVIITORY MIT IIIVIY or VIITILAftll AISUTID IIIDIVIDUWI 1913 CDl.olaDO WICUT rult!DA ~IA IU.UOIS IIIDIAIIA !OlfA IAIIMS lllffllCIY IIAIII IIJIIIDOTA IJIIOIIII IIIITAU ...... -JDSIT IIIIC:O ...... TIIAI VDGUU PDIISYLVAIIA L&& gf .. ,. -yd DATA IIOT IIICLUDID II IDD DTIIATIS. eo 1915 AUIAIIA AIIICIIA AIIAaAS CALJFOIJIIA COIIIICTICUT FLOIIDA IIIDIAIA IOIIA IAIIIAI IIITUCIY IAIIACIUll..--11--s UIIUIID/D.C:. IICIIGAI IIIIIIIOTA 11a1PPI IUIOUII IICIITAU 1111 UIIPilllRI IIIIJDSII -TORI IORTII CAIIOLIIA IOITII DAIOTA OIIIO ....... ORIGOI PIIISYLVAJIIA IIODI IILAIID IOUTII CAIIOLIIA IOUTII DAIOTA TDII.ISII TIIAI VIIIOIT VIIGIIIA tlAIIIUGTOII 11ST VIRGINIA IIUCOIISII 000341 /f'/
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( {. APPENDIX C. NATIONAL DATA INVENTORY IATlOIIAL ORGAMIZATIOIIS lflx 1,c:w11a\ Arsn&w\&AP 00034:.! ASM1i GIE A999S11t&&en Aaerian Aaad .. y ~-F~ly Phyaiain 1740 W.at 92nd St.. Kan .. a Ci~y, NO 64114 (800) 821-2512 Aaerican Aaaoc:iat.ion o~ Reapiratory Therapy 1720 R .. al Row Dllaa, TX (214) 630-3540 CCHAS> Aaeriaan Coll .. o-6 Cb .. 1:. Phyaiciana 911 au ... Hi9bwy CAIU Park aid9e, lL 60068 (312> 698-2200 Aaerican Lun9 Aaaoc:ietion Aaeriaan Necliaal Aeaoaie~ion Depart.aaat Allied a .. 11:.h Bducation S3S Deerborn Cbica90, IL 60610 (312> 645-4697 Aaeriaan Nur .. a' Aaaoc:ia~ion. Inc. 2420 Prabin9 Rd. Ian .. Cit.y, a 64108 (816) 474-5720 Aaeric:an Oc:cupt.ional Therapy Aaaoc:ia't.ion 1383:Piacrd Dr. Suit..e 300 Roakville, ND 20850 (301> 948-9626 Aaeriaan Oat.eopat.bia Aaeociat.ion 212.B. Obio St.. CAie> Chiaa90. IL 60611 (312> 280-5800 Aaeriaen Pbyeiaal Therapy Aaeociation 1111 or1:.11 Faidax a1 .. andria, VA 22314 Aaeriaan Tborac:ic Society CATS> 81
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'i~tc~_. h ... ... .. ........ _, ,. .. .. .. ,. ~ ..... .. ..... ......... ... ,1 .. : ,,, Conuat. saa-4,as.o O O O 3 4 3 { APPENDIX C. t ( Crit.1cl Care Soc:iet.y Soc:ity 0 Crit:.iael_ Car Naclicin 223 laper1l Hi9hwy, Suit. 140 Fullart.on. CA 92635 (714> 870-5243 CAK> t.ionel A-.ooiet.ion 0 Naclicel Director 0 Reapiratory Care P.O. Box 10832 Cbicgo, -IL 60616 (312> 871-7SOO Nt.ional Inat.it.ut.ea 0 Hlt.h Nationel Inatit:.ut on A9in9 9000 Roclcv111 Pike t.bacla, ND 20014 (301> 496-9265 Viait.i119 lur .. a Alllaoaiat.ion 310 8. Nic:bi_9en Cbiaago, 11 &0604 Pr\&OD\ QiH9H-AtiM\N Aa999ia\i9n CHR, AU Aaaoc:iat:.ion. Ina. C:C> 185 Nediaon Avenue. Suit.a 1001 ew York, Y-10016 <212> &79-"4016 Aaeriaen Cancer Soc:iet:.y Diat.rict. o* C:Oluabia Diviaion 1825 Connect.icut Ave. N.W. lfaahingt.on,, D.C. 10009 (202> 483-2600
1740.Broadvay New .York, v 10019 (212) 245-8000 National Foundet:.ion or Lon9 Tera Haltb Car Dr. Paul Kerac:hner
1200 15t.b St.., N.W. Waahin9t:.on D. C. 20005 (202> 833-2050 Polio In~oraation Center Barrit a.11 S10 Nain S~., Apt.. A+I& Rooa9elt. Jalend, IIY 10044
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-~-~f~':~~ .. L. ;_/; .... :, ..... -" ....... : .:; : ; .:- 0 .. ......... {f:, ( ( (. APPi.DIX C. 1 .. piaare a521 1061:.h ,t Cbic:a90, IL AEn4a\49P tlNlipg AMI \b E1derly Actainiat.ra~ion 011A9in9 General Ini'oraatioa 330 Indepeadenc:e Ave s. w. Weabin9toa. D. C. 20201 (202> 472-7257 Aaerican A9in9 Aaaoc:iation Univerai~y of Nebraak Nedical C.ntr Oaeba. II 68105 (402> 559-4416 Aaeriaan Aaaociation *or International A9in9 1511 Ks~ 1.w., Sui~ 102a lfaabia9t.on. D.C. 20005 <202> 688-MUS Aaeriaan Aaaoaiation o* Ho *or th A9in9 1050 17th St., N.W. Suite 770 Waabia9to11. D.C. 20036 (202') 296-5960 . CC> 335 Nadiaon Ave. ew York, Y 10017 (212> 503-7600 220 Cent.rel Park Sout.h, 11A ew York, Y 10019 (212) 582-1333 Aaariaan Loa9J.ty AaaocJ.ation 1000 w. C.raon St.. Torrence, CA 90509 <213> 533-2220 Federal Couaail on A9in9 200 lndependenc::e Ave., s.w. llaabingt.on. D.C. 20201 (202) 245-2451 CAJU Lii'ecere SSOS Central A Boulder, Colorado 80301 aa 000344
PAGE 148
( '. _1,_, ... .. APPEJIDIX C. Ccont.inuecl> t.ionel Council on th A91n9 600 Mayland A S.W. Weat. ,u. 100 llaabi~on. D.C. 20024 (202> 479-1200 Rellabilit.ation b9ineeria9 Progrua llort.b'"!Nlt.enl Univera1t.y School 0 Neclicine NS Superior Cbiaa90. IL 60611 (312> 649-a560 National Geriat.riaa Society 212 w. Wiaaonain Ave. weuk .. WI 53203 (414> 272-4130 Pcu,aSr&M '"''" w&\b bfflMa Ac &at.it.u;t.iga Aaeriaan Coll .. 0 H .. lt.h Care Adainiatret.ora 4650 8aat hat Hi9hway -P.o. ao. saeo letbeada. ND 20&14 cao1> 02-a3e4 Aaes"ican Hoapital Aaeoc:iat.ion a40 N. Lake Sbor Dr. Cbica90, IL 60611 ca12> 2ao-eooo 000345 Coaai .. ion on Prd .. aional Hoapit.al Act.ivit.i .. lllinoia Aaaoaiat.ion d Rehbilit.at.ion Fcilit.1 206 S. 6t.b St.. Sprin9ield IL 62701 (217) 753-1190 CAK> Joint. Coaai .. ion on Acc:reclit.at.ion 0 Hoapit.ala 875 Niabi9an Ave. Cbic:a90. IL 60611 (312> 642-6061 CCJIAS> t.ional Cmat.er 'or a .. 1t.h Servic .. Re .. arch Rooa 8-50 a Federal Cent.er Building #2 3700 Raat.-W..t. Highwy. a,t.tavJ.11 11D 20782
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.... ,. ( ( APPUDIX C. CCIIAS> t.ionl Cent.er 'lor H .. lt.h St.et.iat.ica Faderai Celltar 8u!ldin9 #2 8700 .. at.-lleat. Hitbway 8yat.uv111e. o 20782 (801> 436-7035 Cd> Vetwaaa Acllliniatrat.ion llort.b Cbia.90 VA Hoapit.al (312> &aa-1900 Vet.erena Adainia1:.rat.ion 810 Veraont A .w. Waahin9t.on, D.C. 20420 (202) 389-3781 N Qar 4aaog1at19a CAI> Alleriaaa Aaaaciat.ion *or Continuity o~ Care Nort.bweat.ern N .. orial Hoapit., Chicago (312) 908-3335 Aaerican Fad.rat.ion o~ Hoa Health A9enci -Suit.a S-605. 429 I. St.., S.W. Waabi119'ton. D.C. 20024 <202> SS4-0S26 00034G CAI> a .... bly fd Aabulatory and Hoae Care S.rvic .. Aaerican Hoepit. Aaaocition a40 Lake Sbore Drive Cbic, IL &0611 CAI> lllinoia Continuity d Care Organisation Nt.ional Aaeocit.ion *or Ho Cere 519 c St., N.8. Waabin9t.on, D.C. 20002 (202> 547-7424 CCHAS> tioaal. Foundat.i.on *or Hoapice and Hoa Care S19 C St.., Stanton Park W.ebin9t.on, D.C. 20002 (202) 547-7424 419994AA&0n 4Nl&M w&Sih itsva\&Y &\ll\ro1t&y de11yary xt.n Cd> Aaaoaiatioa 'lor a .. 11:.11 Cu- Coalition lloapit.al lneurnce Aaaoc:iat.ion o6 Aaeric, Chicago (312) 322-Ga30 -
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. .. .. 000347 &PPDDIX C. -*or Dll8 eador Glaaarock Ho Care CAIC> <404> 2&1-0309 or 433-1800 x242 Tra,renol Traacare ... piratory Hoa Service ... C.abrid9 Dr. 11-Grove Villas-IL &0007 (312> 952-8836 Foat.er N~icel 5350 Mc Deraott Drive lerkelV 11 60163 (312) 344-4777 Ms ffl\b ear PE0xA4v Aaaed 1215 S. Harl .. Park F'or .. t.. IL 10130 Aaerican Abbey Hoa Care Chic::a90. IL Hoa.care Aaaoc:iau.. Ltd. (312) 941-7795 UpJobn 2605 B. KiJ.-e Rd. Kelaaaaoo. Bl 49002 (616) 342-7087 Qualit.p Car 100 N. Ceater Avenue Rockville Cent.er. N.Y. 11570 (516) 678-3200 f1nanc1a1 AEsoAM\APP Blue Croaa Aaaoc:iation 233 N. Nichi9an Cbica90. Il 60601-5655 (312> 938-7500 Departaeat d a .. 1t1a end Huaen Sarvic HCFA Cbic::a90 R .. ional CH'~ice 17S II .J'ac::kaon Blvd. Cbica90. IL 60604 ,,_ \ /~l
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. ;.._ .. .. ,-u., ---"- ........ la ....... ,., .... ....,. ............................ ,, "-- ....... ............ -...... .. .............. 0 ( ( Coauaat. saa-4935.0 APPBIIDIX C. 1 .. 1th Care Flnencin9 Adainia1:.ration 200 Indapeacl~ ~.w. V.ebington. D.C. 20201 (202> 245-6726 1 .. 1th rnauranoe Aaaociat.ion Aaerica (312> 332-0800 332-0800 a .. 1t.h Inaurance Council 0 Aaerica Illinoia Depertaent. d Public Aid 981 a. IJeahingt.on St.. Sprin9lield. IL 62763 Illinoia Depart.aent d Rehabilit.etion Servicea Sprin~ield IL 62763 CAIC> Neclicare-ec11ceid hpart.aent. a .. 1t.h & Huaan Sericea a .. 1th Car Finance Adainiat.rat.ion w .Jac:lcaon Blvd. Chica90. IL 60604 (312) 353-3822 000348 ------........... --~-----~----------411119--.-,--~---~------......... _._._, _____________________________ __ Pl .... ote: Abbreiationa prior to iaat.it.ut.ion n .. reer 1:.0 peraona r .. ponaibl Eor cont.act.a: AIU CBAS: HR. CC: Ann.lCot.erla Tb Cent.er for llealt.b Adainiat.rat.ion St.udi Howard Robboy. Ph.D Candice Clark. Ph.D. 87
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( ( (. APPDDIX D. OFFICB OF TBCIIIIOLOGY ASSBSSIBIIT VDTILATOR ASSJSTD IMDIVIDUAL SURVRY &TIOIIAL DATA IIIVDTORY .... 000349 Th Cent.er or a .. 1t.h Adain1at.rat.1on studi .. at Th Univeraity d Cbict190 J.a concluct.J.119 aur,,ey peraona 65 and ovar on prolonged aecbanic:al YeDt.ilat.ion -6or a report. by t.he 0c o Technology .. t. COTA> t..o Coapw. Tb aubJec:1:.a Uia at.udy are peraon as and over who ba .. required aec:hanical ... 1atance or brNUia9 Cart.UicJ.al ,,..tilat.ioa> at. 1 ... t. 4 boura per day ewer at. 1 .. at. a t.wo week t.1 .. pariod. ORGAIIIZATIOII IITIIRVIINU ------------------------------~-------~~~-ADDltmlS .... ---------~---~ ................... ___________ __._..._ .... -----------------------~-~~----------------~-~~~-TILBPBOIIE < .. ~> ------~-..-. ... ------~ ........ ----------Y .. ____ CGO TO QUISTIOII 2.> o _____ ,_ 2. What. kind~ ild'oraation do you hav! ---------------------------------------------~--------~---------------....... -----~~--------4at,-------~------------...... ~------.... ~~-~-----------------~--------~------~----~---------~-~ ~-~---~-w____,__ _____ ___,.._. -----------------~~~.....-~-~ ........ ', \ .. ....
PAGE 153
2. Paaarl: Doe your deu cont.a:ln > Doea your dat.a CODt..in ny diagnoaia ildoraaUon't b> Doea your dat.a conuin any ini'orat.ion OIi 1:.b aaaber d daya and boura per dy t.b individual baa been or aigbt. be on a eat.ilator! c> Doea your dat.a cont.ain any idorat.ion .a.out. t.b aourc:e payaent i'or aervicaa! d> Doea your dat.a conuin any 1doraat.ion about. t.b c:oet. or aaouat. billad i'or tlle .. iadivlduelat y.. llo 1 2 1 2 1 2 1 2 ( 3. lfbt. would be raquirad t.o obuin the .. dat.a on VAI i'roa your C ~11 .. ------------. ----------.. _...._........__._..,_,..._,,...,___,.._ _, __ ~----------~~~~-----------------------------------~------~---~-~--------~~---------~-------------~-.....------~~~~-----~-~~--4. Bow long would it t.ek to obui.n t.bia imormet.ion! ~-------_,........_ -------..,_~ .... ._... .. __...... ....... _______________ ....,_ S. lie-, INIIIY Vent.ilet.or a .. J.ated IndiYiduala bav you 1dmat.ii'iad1 &. How a.ay oi' t.h ... VAI er 65 and oldaz-1 ., 1S-o
PAGE 154
.................. ., ............ ,. ,, ........ ,.,._ &.,.,., .,-.,-l,..,,......,...,~.,-........w .... -......_.~.,._,--'..,..,,w ..,.,.-.,w......,......, .. ....., .. .,_,_,,........,......,.._..,...,......, ................ ...,.,....,. ....,......,.__,,,,,..,_...111,_.....,...,.._.._,_, _____ .....,._ .,, ................ ... .. Contract 533-4935.0 000351 7. ABK OIi all 8D FOi FIWIIINB ltFIJIIITION, lF AVA1Ull. llllt i1 thll 111 ,_. Ndl Wll II INI Mrl bi.,,_ 1> PMlllrY diagnaais, bJ IIICOndlry diagnosis, Ind c> u. ill11111 ftlCISSitati111 wntilatar -inm1 u. mt slhl i1 111d a of taday, thl VAi' H Un days) an wntilltcr CVUJS>, ti Un ""' par u,J wntilltar (MIi), npadld ldditional ti Cin days) an tM wntilltar CEVLOBJ, apadld pa,-._,. naa UST Clll1E II.I. TIIIT APPLY),. and if poaiblt, l'ICGl'd the propariian paid by the ....,.:ti IOftll. !Bl 811 a~ IIII I.II. ml mm PfMQI' IIIQS (days) (hours) (days) Nldicare Nldicaid PrivlH FUy Othr l......a CRCIFY) EIMPLE: 66 1)aJID laJ 5 4 14 1 2 3 4 s b)!!ln!Pftil cupp '~-,.,_ ,., m (j) J 1) 1 2 3 4 5 b) cJ (j) ,.,_ ") -C.) (j) 2 ., 1 2 3 4 5 b) c> (I) ci,_ ,., ,.,_ <,)_ 1) 1 2 3 4 5 r: b) c> C,) c.,_ c.,_ (j) (j) -- ., 1 2 3 4 5 IIJ c> ,., no_ ,.,_ ,., Cl) aJ 1 2 3 4 5 b) cJ ,.,_ (j) uu c,) -(j) 6 1) l 2 3 4 5 b) cJ ,., -Cl)_ ">m m -7 1) 1 2 3 4 5 II> c) (j) ,.,_ ,.,_ ,.,_ (j) -I 1) 1 2 3 4 5 b) cJ (j) ,.,_ ,.,_ ,.,_ m 9 1) l 2 3 4 5 b) c> (j) -c.,_ ,.,_ ,., -(j) (~ .90 ~I
PAGE 155
.- '., ,,_\, ..... ; .......... .............................. ...... "" ........ -.... ..... -.w ..... -... .............. ..... .. \.~,---" ......... ,.. .. .... ........ .............. \ ...... ... l ,. Coatrect. 113-4935.0 000352 ( 7. ... 1...0 llallll lllI Ill HI mm PfmENTIPID (days) (houri) (days) llldiCIN Nldiclid ~ivat F111ily 8'hlr lftlUNllCI CSPECIFY> EIIIUa 16 IJCDID 1a, s 4 14 l 2 3 4 5 Mf!!l--il cHDID ,.,~ ,.,_ ,.,_ ,.,_ ,.,_ 11 1) 1 2 3 4 s Ill C) ">-.,.,_ C,)_ C,)_ c,u -11 ., 1 2 3 4 5 II) C) c,u -C.) ,.,_ C,) ___ no 1) 1 2 3 4 5 IIJ cJ ,., -C.) (1')_ C,)_ Cl)_ 13 1) 1 2 3 4 5 II) C) Cl)_ C.)_ ,.,_ ,.,_ ,.,_ ( 14 1) 1 2 3 4 5 II) C) cs,_ ,.,_ c1u_ c.,_ ,.,_ 15 ., 1 2 3 4 s .. C) C,J (1') ,.,_ ,,,_ cs,_ 16 ., l 2 3 4 5 Ill C) cs,_ ") -Cl)_ C,)_ ,., -17 1) 1 2 3 4 5 la) C) Cl)_ no_ ,.,_ ,.,_ no -11 ., l 2 3 4 5 b) c> ", (1')_ Cl)_ ,.,_ Cl) 19 I) l 2 3 4 5 II> C) ,.,_ (j) ,.,_ ,.,_ cs,_ aJ 1 2 3 4 s (",, II> c> c.,_ C.) ,.,_ c.,_ cs,_ -CIF IIJIE IME 18 NEEB, NAICE BlnCNL alIEB IF THIS P&. > .91 /.>eJ-
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'~ 9. ( ( 000353 What., 'Eor an in general, do you think ar th lor iaauea in caring elderly individual on prolon9ed aechanical ventilation? --~~---------~-~---~~-~---~--~~~~--~~----------------~-----~ -~~-------~---~-~------~~----~---~-~---~-~-~------~------------~--~--------~~------~-------------~---------~--~~--~---~-~----~-~--~-~~-~~---~--~~-----~-----~----~--~----~~-~----~~---~-~------~---~-------~~---~~-----~--~~----------------Are there have data any other organization on thia population! that you know 0 that aay Yea No NANE~~-----~--~~---------~-~~------ADDRESS ____ ~--~~---~---~~~--~-~------~~----~--~-~-----~--~-----~----~TELEPHONE __ ~------~~--~--~--~-----~ THANK YOU FOR YOUR ASSISTANCE! Int.rviewer Dat. \92 /5)
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' ~-~ .. _.."-..,' .. ,~ .. l--~ ............... ;;~:;..;." ........ ..... ....,. i ............. ~::-..,., ........... ,, ..... ......__.. .. ,'"'!',,.fi....... -.~,,~--......... S: -.. ......... .................... ....................... .......... ............. ......................... ........ -... ff"<'v~ ~, "-(:r .. i; >' : ~'. ( ( (:: APPDDIX a:. RBGIOIIAL ISTITUTIONS CASK STUDIES LA\ Af Ipet,i\y\igpa Boeton Univeraity Hoapital Gaylord Hoepital Neriden-W.llin9*ord Hoapital Goldwater N .. orial Hoapital Betheacla Lut.heran Hoapital Ranc:boa Loa Aai9oa Crei9ht.on Univerai~y Hoapital 0002-5-l T Inatitut.e ~or Reaearc:h and Rehabilitation Baory Univeraity Hoapital Univeraity o66 Wiaaonaia Hoapital St. Nichael' Hoapital. Toronto .-. 93
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!fl!ll!!J' .. _~!lf!M_f._Jl,Mllilll; .._.,.__..,.,..~,._-, ____ ~,....,,_.-.. __ __.._.._.,.., 11~.~ .--' ii --_.._,..,_. --------------~-~---:~ .. .. ~:, tli, .... I' OFFICB Of" TBCHLOGY ASSBSS~ENT vIITIUTOII ASSIST&D IDIVIDUAL SURV8Y RSGIOIIAL 1STJTUTIONS CASE STUDIO DATA INVENTORY 000355 Tb c.at.ar *or a .. 1t11 Adaaiatrat.ion Studiea at t.be Univeraity o~ Cbia .. o 1 conducting a aurey of'paraona 65 and over on prolo~gd aacbaaiaal vaat.ilat.ioa :for report. by t.b O:fi'ic:a o'6 Tec:lmology a ........ t. t.o eon..-. ... Th aubJect.a o:f t.hia at.udy are peraoaa 65 and over wbo b required aec:banical ... iat.anc :for br .. t.b1n9 at. leaat 4 hour per day over at. leaat. a t.wo IHNllc t. .. period. 1. Ar you able t.o provide in*oraat.ion on t.h .. individual who were patient.a in your :facilit.y.:for all or part o:f tb pariod (". fro ayayat. s. 1111 t.hrough 4y9yat. I, 11ast c: Yea ______ lo ______ 2. In t.he waek froa &yayat. 5 through Aygyat. 9. how aan, Ventilator A .. iat.ed Individual were cared :for in your inat.it.ut.1on1 3. How aany t.he .. VAI are 6S and older? ... \ \ /. /5'}
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Cont.rac~ saa-4935.0 00035G ( 4. ua tM ,., adl Ill 1111 ..,, 11 ,,_,, 1111119i-. M a_, G11ru1-. 11111 d tlla ui.. ( Fl 11tuti11 Wlllillltr-tllsi ... 81111 la .. 11111 ., a 1 IL :r ...... tilll Cia .,. Wllti... N.a la ,_. illliwH-. till Cia ..... par dlyt I ..tUllar NIii>, ...... lddiHCIIII till fia .... 1111 -*illllr aa, t 1111 PIP, l -1.111 CClm.E AL 11111' IIIILYJ, 11111 if ..-1M-. .....a tlla '1 IJ ll'IMll lllill lJ tlla I I HW II S 111 DJ? EIIIU1 II 11a111 .._ __ ..,,_ te cHR 1111 Ill Ill II.II ..,.. ..... ....,., lal s 14 1 ____ ... ____________ .., ___ d ___ ____ ... ____________ .. ___ d ___ ---.-ill ____________ ... d ___ ____ .. ____________ .. ___ d ___ s, ______ ., ____________ .., ___ d ___ '---.-i-------------... ___ ct ___ ______ ., ____________ .. ___ d ___ 1._ ___ .. I"""" _____________ .., ___ cl ___ ,. ______ .. ____________ .. ___ cJ ___ 9S F111ily CllMr lsaa CIIIECIFY) I I 3 s __ CII_ CIJ_ Cl>_ Cl>_ cs,_ I 2 3 s __ CII_ CII_ Cl>_ cs,_ m_ I I 3 4 s __ cs,_ e11_ CS>_ cs,_ cm_ I I 3 4 s __ c11_ ,.,_ ,.,_ ,.,_ m_ I I 3 4 s __ ..,_ cm_ cs,_ cs,_ cs,_ I I 3 s __ cs,_ ,.,_ CS>_ cs,_ cs,_ I I 3 4 s __ CII_ CII_ CIJ_ CS>_ cs,_ I I 3 4 s __ CII_ CII_ cs,_ Cl>_ cs,_ I I 3 4 s __ CII_ CIJ_ Cl>_ cs,_ CIJ_ I I 3 4 s __ CII_ CIJ_ Cl>_ cs,_ cs,_
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: ......................................................................................... ----~ .............. ................ -.................. ~., ~ .. -. ......... .. --.. .......... .. -. ........... .. -:.,., ,., ... ~.,..__,.._ .. ... ... ,., ... '" ... ... -Contract 533-4938.8 000357 ......... r' ( l'l ..... IIIL I.II Ill -.. ,., ..,., ..... ....,., -..tan ... ill Priwla .... CIIIECIFY) --a I 14 I I J 4 I 1111 II ... --CSJ_CIJ_ cs,_ I I J 4 s Ill eJ ..,_ CS)_ ..,_,.,_ cs,_ 11 ., I a 3 4 s Id eJ cs,_ ,.,_ ,.,_,.,_ w_ II. ., I a 3 4 s Id eJ -cs,_ ,.,_ ,.,_ cs,_ -I I 3 4 s M eJ -cs,_ CSJ_CSJ_ cs,_ 14 ., I a 3 4 s (. Id e) -,.,_ ,.,_,.,_ cs,_ II ., I I 3 4 s Id e) CIJ_ ,.,_ ,., _cs,_ cs,_ II ., I 2 3 4 s .. e) "'-,.,_ ,.,_,.,_ C,)_ 17 ., I 2 J 4 s Id I) ..,_ CSJ_ ,.,_ ,.,_ (SJ II ., I 2 3 4 s Id I) -cs,_ cs, _,.,_ cs,_ It ., I 2 3 4 s Id el -
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~! .. ................................... ................ ............ ~-4-........... \ ............... .-... ,:, .................. ............................ ........ ..... ... _., ( ( 000358 s. ~ ta uae approat .. u aaount. billed per day ~or t.b elderl7 VAia in-~our ayat.eat -----------~------------------- la t.11 paat. aoat.b Ila .. t.b nuabera 0'6 VAZ in your a7at.ea 61 aacl ewer., ........ dearNeeclt or at.ayed about. t.b .... CCllacl Oll8> 1aar .. aec1 ___________ 1 o.ar..... ____________ 2 ~red about. t.be .... _________ 3 7. Do you t.11.iak ~t. int.be a .. t. aix aontba th nuaber o~ VAI in~ ayat.ea U mid oer will .inc:r .... deer .... or at.ay alNMI~ U.. --t Cc:BaCK 0118 > Pl .... explain~-baa.la ~or your .. t..i~-laar .... __ .;. _____ 1 .. ----___________ 2 __________________ 3 DPLAI------------------~------------~--------~-----~---~-----~--~-------------------------------~---~---------~~~------~-----------~---------------------------------------------------------------------------~-------------...,--------------------~-------~-------~ ~~------------------------------------------------------..----------97
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( ,. in ........ '6or pleoia9 an la~ opiai-. wllet. _.. t.be elderl7 .,... ... oa ,,..t.ilet.or ot.ber p_,,....t CCIIICLK ALL TUT APPLY> ~hen *or li'6e-.. vi119 00035~ -bl pat.i .. t. t.o oont.inue product..! 1~ a ... t.ient. baa pproprit.e oover or reiatnar ... ent. a d. pat.lent. 11 .. r .. eoabl level -6 ... u1 aoapet.eaoe 4 OtlMlr CDPLAl>S ---------------~---------... --------------.-...-------------------------~----------------------------~----...................... ~....---------------------------_________ ,........ _________ ...................... ______________ ~---------------------------------------------------------------------~-------------------------............... ----------------_,.,.... ________ .._. ......... ___..... ............... ..._....._ ............ ~------------------------------------------------la ~our opinion. wbt. prol0119ecl eat.ilat.or i t.b aoat. eppropriau ddinit.ion dependenayf ------------------------------------------------------------------------------------------------------------------------------------------~----------.. -----------------------------------------------------... ---------------------------------------~---------------------......_---.. ---------------------------------------------~---~-~-~--~------------------------~~-----------~----------~------------------------------------------------~-----------~------------------------.__-98
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. ,' ,, t. 10 11. ------, .. lo -------, .. CP1--9ie ua t.be -- aclclr ... ..ca u1eplaolle nualter fd t.b perecma t.o ooaMIClt ~or tlai ildonaat.ion. > ... ______ -------------------'al----ADDRm _______________________________ ___________________ ,..._ ___________ ,.... ____ --------------------------~------~--~~ T81.UB0118 ___________________ clcll.t.ionel a.a .. u bere. -----------------------------------~------------------------------------------------------------------------------------------------------------------------------------"------------------------~-------------------.-------~-----------~------------~-------~--~---~-------------------------........... ___ .......,... ____________________________ ~-----... --------------------OPTIGIIAI.I ----------------------------------~------~ .... __________________ ~-.-.---------TITLa/POSITIOll ___ ~-~----N--N---N---~-----"---"---ADDRm ____________________ __________ ., ____ _______________ .. ------~----------~------------------------------~ ,...... ... __________________________ ___ TUIIIC YOU FOR YOUR ASIIISTAIICal ...._ 99 \ I~
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( ...... .... .,. .. .......................... ............ ~ ................. -................ _. 'h".. ...... .............. -......... -.. --.. .. Cont:.raat, 533-4935.0 000361 APl'EJIIJiY G. RBGIONAL IIISTITUTIONS CASB STUDIES IMEY91 af YM\41;t.gg-PeMP4M\ fHMP bv \b ls;hy\\ Dvgig 199&9\Y pd \b 6RRic;an Lyng Aaapgia\igp A( ...... H1iHe JMM, 1ff3 Def'init.ioa o* Yellt.ilet.or-dependenc:y: A pet.ient. who required aeabaaical ventilation *or or t.ban t.br .. weeka. T~t. nuaber d inat.itut.ioaa keel t.o participat.e: 130 Acute and cbronic care boapitala 120 Long tr car Eac111t1 1 lo car coapeni 9 R .. pon .. rt: 82.0ts Tot.al awaber VAia identi~ied: 147 diat.ribut.ion: Age Total Percent in y .. ra Nuabera (ts) < 1 -~--9__ 6.1 l 15 ____ s __ __3.4 16 53 --~35--_23.8 54 69 __ so~ _34.0 > 70 ---"-_32., Tot.al _147_ 100.0 Tfpe 0 Inatitution Total Nuaber Percent 0 Pat.tent.a uo At boae __ 20_ _13.6 Chronic boapitela __ 33_ _22.4 Lon9-t.era cr Eecilit.y ____ 3 __ -__2.0 Acute care boapital __ 91_ _62.0 Tot.el _147_ 100.0 100 I~/
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'!'..................... ...................... ,.,. .... ...... _, ..... ........ ,,_.,.,._..., ....... I .-. \ ( eonw.at. saa-4,n.o APPEIIUIY TJ'pe Aout.e Hoepi"l Unit. Geaeral aeclical-aurgical __ 38_ ICU. CCU or ot.ber apaatalisad c:ar unit. __ 53_ Tot.al __ 91_ Diapoaea Tot.al _40.0 _60.0 100.0 ..... Nuaber A9 1. Chronic obatructiv lung di ..... 2. Aayot.ropbic lateral acleroaia 3. Spinl cord inJury 4. Cent.ral aerYOUa ayatea diaordera cva. lnt.racrantl b .. orrh 5. Otber a~oauaauloakelet.al diaordera Nuac:ular dyat.rophy a Old polio 2 ScoJioaia 2 Guillain-Barra 1 &. Adult. r .. pirat.ory diatr ... aynclroae 7. In~ant r .. ptrtory diatre .. a. Balipaacy 9. Pulaonry in~ect.ion~ 10.0ther C:.rdiac 4 _4!928_ ___sa __ __ 1a_ __64_ ---7 -__ 44_ _12_ __54_ __ 1a_ __ 41 6_ _57 ........ 4 .. --....... 6,_ __ 74_ __ 10_ __ sa ..... 20 .. .... 58 .. 0003G2 lxt.rapolatiOli to t.b eat.ire at.ate~ Na ... cbu .. t.t.a baaed upon 100. rather't.han 8211 r .. pon .. rat. yield 162 ventiltor depandent si-raona. laaad on t.be r .. ulta not.ad int.he above atudy. t.h incidence in Ne ... chu .. t.~ would be 2.a,100,000. Applyi119 t.bia .... t.bod t.o t.h entire U.S. population <233. 981.000~ July 1983> yield vent.ilet.or population .. tiaated at. 6573. ------------~---------._,..~---------49----------------~---I -~-----___ ...... ___________________ ,_ Th ... dt. were contributed by Barry Nak N.D Boat.on Unieraity School d BacU.cine and Cbatraan. BTS Lon9-Tera Care Coaait.t. ... 0at.ober a1. 1983. Coaputationa o parcent.a9 .. ar by Suaea Dumair JI.A .. Ra .. arc:b Pro3ec::t. Aaaiatant. 101
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f~ .... ~jila-... ~.....i:.----------.. ..: .. .;;.._.-_-----~r.-~-...:....;w. .... ____ .. ___ .;,. .. ~.,..;..,.,.......,.,.,,,.---------.-----( ( ( .\ APPEIIDIX H. REG?OIIAL IIISTITUTIOIIS CASE STUDIBS I\M4Y 91 YAie An M JP\MY ear. Va&\ ., 9:en'4&a Beui\i, 1w-1w All VAI Pat.ient:.a On Ye11t.ilat.or < 7 daya Ga eat.ilator > 7 daya Tot. VAI Pt.J.ent.a 65 and ewer On ent.lat.or < 7 dY OIi ,,..t,ilat.or > 7 day Tot.al Tot.al. Nuaber 909 109 1018 Total Nuaber 300 46 346 Percent. 01) 89.3 10.7 100.0 Percent. Os> 86.7 13.3 100.0 000363 -----------------..-------...----~~~---------------~-~--------.------.i,--~---------~--~- Th ... dat.a were cont.ribut.ed by Rober1:. Byriclc. N.D Direct-or~ I.c::.u. St. cbael1 Hoapit.al,, Toronu,,, Ont.aria. .... \ 102 I
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--tit Y ft ii C MM rt ,. ,':-' care for Lt fe Colltnct 533-4935.0 LIFE SUSTAINIH TECHNOLOGIES AND THE ELDERLY PROLONGED MECHANICAL VENTILATION ... .. .... I I : TASK 4. OUTCOMES OF CARE October 15, 1985 Prepared By: Augusta Alba Robert John Byrick Allen I. Goldberg Frank J. lnclihar 61n1 Laurie Margaret Pfroaer .. '"\ \ 00{)?~, .... \. '-j
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~!,,., ............. ~ j l ,.-, ;:. I I ,;.,:. ... rt r re 1 r r r 't 4, '~, ::','~ ~ ,: ~:f .. -'-~.JI., ,'_J p,., "' t,,' ' .. ,, o .,.,~ ,, I : ...... ,"f' .. '.;,,f,.: 1. .... ..., '': ( C Contract 533-4935.O 006 TABLE OF CONTENTS OFFICE OF TECHNOLOGY ASSESSMENT LIFE SUSTAINING TECHNOLOGIES AND THE ELDERLY PROLONGED MECHANICAL VENTILATION Task 4. Outcomes of Care A. Medical Outcomes B. 1) Survival studies 2) Detenninants of survival 8 3) Physiologic effects of mechanical ventilation; prognosis, need for further care 15 4) Rate of survival, death; dependency on chanical ventilation; degree of dependency 17 5) Impac~ on functional ability 18 6) Technology: safety and risk 2O 7) Medical outcomes at Goldwater 21 Social, Psychological, Economic Outcomes i I 1) Psycho~ocial outcomes ............................................................ 25 2) Econoa1i c outc0111es ....... ........................................................ 28 3) The consu111ers1 view .................................................... 3O 4) Another perspective ............................................................... 47 5) A final c011111entary about the_psychological effects on caregivers and family and the impact on dying ......................................................... 48 References ..................................................................................... 51 ....... I:{
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C ;..,. .. Appendix A. Appendix B. .... ... APPENDICES Outcome of Respiratory Intensive Care for the Elderly California Health Decisions -Involving Citizen in Health care Choices \ ....... -...... ----................. .. :./T.~-~77~--.. -\ -... '. "., 000366
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;'~ 1no,e tittft" 1p11:1,:r e t uw, 01111 uu u 1, 1utsr~ .r ,,.,x ... .......... -......... .._ --(. (~ OTA Task 4 Contract 533-4935.0 LIFE-SUSTAINING TECHNOLOGIES AND THE ELDERLY PROLONGED MECHANICAL VENTILATION TASK 4. OUTCOMES OF CARE A. MED I CAL OUTCOMES 10/15/85' OOOZ67 1-The questions raised by OTA about medical outcomes have been answered by three knowledgeable and experienced physicians with different perspectives: Dr. Robert Byrick Critical Care Physician (Anesthesiologist). Authority on dical outcomes in an acute ICU (St. Michael's Hospital, Toronto, Ontario). Dr. Frank lndihar Practicing Internist/Pulmonologist. Innovator of long-term respiratory care unit at a large metropolitan medical center (Bethesda Lutheran Hospital, St. Paul, MN). Dr. Augusta Alba Physiatrist/Neurologist. Authority on long-term respiratory care the pioneering Howard A. Rusk Respiratory Rehabilitation Service (Goldwater Memorial Hospital, New York, NY) Since each original response has had a different emphasis, they are pre sented in their entirety; the report also incorporates c011111entary from other physician contributors to this project. The issues are first put into excellent perspective by an extensive review of the literature by Dr. Byrick. 1) Survival Studies (Byrick) \ Historically, studies of the medical outcome of intensive care have used mortality as an end-point. The early reports of ventilatory care in special-; ft~-------. --~
PAGE 171
'Pl'"tj9',trt ...... llb,1l 1tttd1_,.w tthltlt b!Da,atMtit ihli'-ld tia .. wl;~.,.,.:.~i.1..aw-..i?awW..,..aQkJ"M"""' .... .a.,~tdhlldM143M:MlittNWW'~natJ.-Qr MtU -HNP?Nlllt(N NIii h~ .... -.... """'" tllWWWWUWM ~w ....... _. ............. .n .. .. :i-',' (' OTA task 4 10/15/85 Contract 533-4935. O -2 -0 0 0 3 6 tJ tzed units (e.g. polio units) were highly successful in saving lives (1, 2). This technology ~volved and improved _(3) fn response to increasingly more camplex clinical problems. In extending ventilatory care to groups of patients not previously ventilated, the outcome of this therapy has not been critically evaluated 1n controlled, double-blind studies. The polio survivors were often young and otherwise healthy, resulting in an invariably tmpre$sive outcome. Durfn9 the 1960's and 19701s1 studies (4,516) were performed on the outcome in adults after respiratory failure. The outstanding features of these studies were: 1) the mortality is high in patients with multi-organ failure 1n spite of respiratory care (25-501 range); 2) the elderly (aged over -. 65) have a higher mortality rate than younger patients; and 3) prolonged ventilatory care is highly effective for many patients with single organ failure resulting in respiratory insufficiency (e.g. neuromuscular). Empirical (7) evidence exists thdt ,espiratot) intensivP. care .n adu" cases of respiratory failure decreased both morbidity and mortality in specific disease processes. However, because of the presumed efficacy of ventilatory _care by clinicians, no randomized prospective controlled stud. 1es have been perfonned. In the 19701s, increased health care resources were expended on medical (8) as well as surgical (9) intensive.care units. Studies have evaluated costs of care (8,9.10) and the therapeutic interventions (11) used in critically-111 patients. With the increasing complexity of the clinical states treated I I
PAGE 172
..., .. _, ... ...._ .... ._.__,_..,.._ ___ _.........., ________________ _....,. ..,.,,11oo""'11oowM_._,..,...,_,,~wwww..,.--..,..,. .. ,. .... .. ___ .~( (_ OTA TASK 4 10/15/85 Contract 533-4935.0 3 000~:; in fntenstve care, a new set of probls made these studies difficult to evaluate. Firstly, ny patients, especially tn dical ICU studies (12), were never chanically ventilated. Thus the outcomes of these studies of intensive care do not specifically relate to outcOllle after ventilatory care. This denotes a change in the clinical concept of intensive care, from a specialized unit concerned with respiratory failure and associated illness, to a unit treating all the critically-ill patients in the hospital. Secondly, these studies (8-12) represent a heterogeneous population of patients with no well-defined disease entity or therapeutic intervention. This period of systematic investigation, however, was very i~portant, fn that clinicians showed that we cannot rely on traditional diagnostic categories to evaluate outc0111e in complex aulti-organ system failure. They also established that the high cost of intensive care in a world of limited resources would necessitate s~rategies to utilize ventilatory care only fn appropriate settings. Thibault et al (8) documented that only one in ten patients admitted to their medtca_1 ICU/CCU setting required a major intervention, suggesting that for the majority of patients, ICU/CCU services were unnecessary. Recent data for survival statistics, by age, after medical intensive care is shown on Table 1 -taken from Thibault (13). The overall mortality rates are representative of studies done in similar intensive care units and exemplify the universal finding that ICU mortality and hospital mortality increase markedly in patients aged greater than 60 years compared to younger groups. ', \
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( C OTA task 4 10/15/85 Contract 533-4935.0 t 000370 More taportantly, Thibault (13) reported 6-12 aonth survival after medical ICU discharge (Table 2). The follow-up mrtality rates were also age related, betng fairly constant up to age 60, then rising abruptly. The cuaulattve rtaltty at ntne aonihs for patients over 70 years of age was 391 and-for patients over 80 years old was 461. The outc0111es of medical ICU care (13) was also markedly affected by diag nosis (Table 3). It is important to recognize that ny of the patients fn this 11st of diagnoses with the lowest 1110rtality rates are never ventilated (e.g. coronary insufficiency, chest pain, syncope, adverse effects of drugs) or require ventilatory support for only a brief period of time (e.g. drug overdose). In the context of prolonged ventilatory care after acute illness, the hospital mortality of patients with such diagnoses as respiratory disease (24.41), gastrointestinal bleeding (20.01), sepsis (47.41), renal failure (23.31), and cardiac arrest (70.91) is 111ch higher. This list also serves to indicate some of the jor diagnostic causes of respiratory failure and illustrates the difficulty 1. drawing c"11clus,ons concernin9 the ef of a single intervention such as prolonged ventilatory support fr0111 such data. I j I With specific reference to the ,1derly, Campion et al (14) studied medical ICU outcome and found older patients were more likely to receive major lifesupport fnt~rventions such as mechanical ventilation, but were less likely to survive. Studies of surgical fnt~nsive care outc0111e have yielded similar mortality figures, with the same limitations. '-~-.. / ,, I' ,._, ---..,-"" \ /Jt:;
PAGE 174
, ,_ C ........ ---:#"". .. ... --\"' ......... 1 ... ,.. f. -i, -~ :~-.. -~~~~~~WM!-4~?-f ......... OTA Task 4 Contract 533-4935.0 10/15/85. 000371 5 -TABLE 1 OUTCCIE OF MEDICAL INTENSIVE CARE MORTALln BY DECADE Age Nmber ICU Hospital Mortality Mortality I I 0-19 52 5.8 7.7 20-29 354 4.4 4.8 30-39 375 5.9 8.5 40-49 687 3.6 5.8 50-59 1298 6.3 9.6 60-69 1705 8.4 14.0 70-79 1443 9.7 16.8 80-89 662 13.0 21.8 90+ 104 12.5 26.9 I Reference: Thibault, GE. The1Medical Intensive Care Unit: A five-year perspective. In Ma~or Issues in Critical Care, P. Parillo and S.M. ~res, eds. Wtl ts I W11kens, 1984, pp. 9-15. .--~-... --, ,' I, _., I 7/
PAGE 175
(- OTA TASK 4 Contract 533-4935.0 10/15A)i8 0 3 7 2 6 TABLE 2 ICU OUTCOMES: FOLLOW-UP NORTALin BY AGE Age N1111ber Post-hospital Mortality 0-19 38 5.3 20-29 236 4.2 30-39 237 7.6 40-49 474 7.0 50-59 842 7.8 60-69 1015 12.7 70-79 831 19.5 80-89 389 23.6 90+ 62 29.0 Reference: Thibault, GE. The Medical Intensive Care Unit: A five-year perspective. In ~or Issues in Critical Care, P. Parillo and S.M. Ayres, eds. w 1111115 I Wilkens, l984, pp. 9-15 ... \ \ tl>-
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'" l@J.,~I; .!CJ 11d ... Iii Ill ........... .............................................................................................. .. ,.. I : ..... ,... ~\ ( C C::, \ ) OTA Task 4 Contract 533-4935.0 10/15/85' 7-000373 TABLE 3 ICU OUTCOMES: MORTALln BY DIAGNOSIS Diagnosis NUllber Posthospital Hospital Mortality Mortality Myocardial infarction 828 12.2 15.4 Coronary insufficiency 650 6.2 2.1 Arrhythlnias 441 12. 7 '6.3 Chest pain 337 4.7 0.2 Congestive heart failure 305 26.6 10.5 Respiratory disease 286 20.6 24.4 Drug overdose 241 5.8 0.6 Gastrointestinal bleeding 181 17 .1 20.0 Neurologic disease 92 20.6 19.6 Syncope 91 12.1 1. 5 Diabetic syndrome 80 10.0 2.5 Adverse effects of drugs 62 9.7 1. 2 Sepsis 54 18.5 47.4 Renal failure 54 20.4 23.3 S/P cardiac arrest 31 12.9 70.9 Reference: Thibault, GE. The Medical 'Intensive Care Unit: A five-year perspective. In ~or Issues in Critical Care, P. Parillo and S.M. Ayres, eds. w 111111s I Wilkens, 1984, pp. 9-15. 113
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. OTA Task 4 Contract 533-4935.0 10/15/85 -s000374 ( 2) Detenainants of Survival In response to the limitations of simple surv;val studies of intensive care outcoae, Knaus et al (15) recognized that a system was needed that would capture the essence of what an intensive care unit does. The APACHE sys tell was devised, which stands for Acute Physiology and Chronic Health Evaluation (16). The acute physiology score (APS) of APACHE is a relative value scale assigning a weight (0-4) to each of 13 c011111on phys;ological parameters .that describe the function of the body's major organ systems. This index (APS) has been validated (17), and there ts a smooth and consistent relation ship between APS on admission and risk of death. This relationship has been verified in multi-centre trials in the U.S.A. (18) and France (19). A major finding in the series of studies which have been su111111rized by Knaus (15) was that there are five major potential factors determining outcome of intensive care (and ventilatory care). These factors are particularly relevant to the outcome of care in the elderly. The APS represents t,~ degree of pnysiological disturba ce of~ ~~rticular disease process; the elderly are considered to have a reduced physiologic reserve. Knaus' studies suggest that acute physiologic abnonnalities have the same implication in terms of risk of death regardless of the disease process initiating the physiologic disturbance. In the elderly, outc0111e should be assessed in tenns of APS rather than the traditional diagnostic classifications as discussed in Part 1 (Survival Studies). Because Knaus' studies are so important, each of the five detenninants of I ~-::: \ outcmne will be discussed independently with special reference to the eltlf
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( ( (. OTA Task 4 Contract 533-4935.0 10/15/85' _9_000375 derly: a) type of disease process, b) severity of disease, c) chronic health status, d) age, and e) therapeutic modalities available. a) Type of.Disease Process There is no doubt that the type and the reversibility ofthe primary disease process precipitating ventilatory care determines_ outcome. For example, can_cer patients have a higher mortality rate than other respiratory failure subjects. Patients with irreversible disease processes, such as severe pul11anary emphysana or end-stage ischfc heart disease, occasionally cannot be weaned from ventilatory support in acute care hospitals. Patients with irreversible disease processes requiring ventilatory support are the subject of this OTA report. Therefore, ft is important to emphasize that these pa tients are a vast minority of the total group of patients treated with pro loRged ventilatory support. It is equally important to emphasize that these patients with irreversible disease processes are extremely difficult to pre dict "failure tn wean prior to instituting initial ventilatory care. This issue prognostic uncertainty is the crux of the physician's dilenma in the decision-making process which will be discussed in OTA Task 5. Multi-organ failure in a patient treated with ventilatory support also in creases the risk of death (21). This study (21), and our published data (Appendix), suggest that unless organs system failure are reversed quickly (less than 2 days), the hospital mortality rate exceeds 50 percent. None of the 90 patients with three or more organs system failure for more than 2 days left hospital alive. Our experience 1n the elderly (Appendix)
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:,..,., ......... ........ Mljb._11161111 ,......, ... ,__,.bllltllib,._ __ M -M 1-1-M~H ti:w.t tt .... t ilMlt CW ....................... ...._ __ ... ,.,--.. _,~...,_, .. w_,..,_........,"__,,_._,~...., .... _._,.....,.. ______ ,. \ t .. OTA task 4 10/15/85 Contract 533-4935.0 10 _O O 03 7G specifically suggests that the cOlllbined effect of renal and respiratory failure ts a very high probability of death. These data 11Ust be noted to eaphastze the difference in patient populations between those treated to day in intensive care and polio.patients treated in the 1960's (1,2). The potential for long-term salvage of large cohorts of patients was very high during the polio epidemics. Single organ failure (respiratory) was specifically treatable by mechanical ventilation (hence reversible) in younger people.* In contrast, patients treated with prolonged vent11atory care in ICU today have severe, irreversible disease, often coexisting with n,ltfple organs system failure in elderly people. b) Severity of Disease Process If severity is analagous to APS1 then the probability of death increases with increasing severity as shown by Knaus et al (15). This relationship is also true for a variety of primary disease processes (Fig. 1). *Editorial C01111ent: The polio patient had acute respiratory failure because of f~volvement of the neuromuscular system; there was no primary prob1 with the lungs. The sa good outcome has been the experience with -other medical conditions which involve the neuromuscular system. I agree that the pathophysfology ts a very important prognostic factor. Controversy exists regarding which kinds of pathophysiology is appropriate for prolonged mechanical ventilation. (Goldberg}
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, \. C /ft: \(. ..... -.. .. OTA Task 4 Contract 533-4935.0 ) FIGURE 1 EVALUATING MEDICAL SURGICAL INTENSIVE CARE w ... C a: :c ... C UI 0 .J C t-it en 0 :t I 100 90 80 70 IO 50 30 20 10 0 // / ~/ / / / / / / 0 I U a 4 INCREASING ACUTE SEVERITY OF ILLNESS CACUTE PHYSIOLOGY SCORE) OLS Regeession All s~s ~nificanlly tP < .011 la,ger than zero Relationship between severity of ilness and hospi:al death rates by disease. 1011s''Wo 03 '77 -11 -Reference: Knaus, WA., Draper, EA., Wagner, DP. Evaluating MedicalSurgical Intensive.Care Units. In \!Nor Issues in Critical Care, P. Parillo and S.M. ~res, eds. W1 111 and W1111, 1984, pp. 35-59. I I .' ... /. ?1
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,, ,i,,. OTA T1sk 4 10/15/85 Contract 533-4935.0 -t{J VO 3 7 S We investigated the influence of severity (APS) specifically in very elderly patients. (75 years of age and older) who required ventilator care in our respiratory intensive care unit (RICU). This experience is fully de scribed (Appendix) and has been accepted for publication in Critical Care Medicine*. The major findings are as follows: 1) The APS on RICU admission could not predict survival. 2) Only 17.91 of these elderly patients died in hospital {11.51 in RICU). 3) This mortality rate was higher than in younger patients. 4) Hospital survivors were not only froa the low-risk mnitored group or after elective surgery; that is, age and APS cannot predict outcmne, and the d11emna of prognostic uncertainty in the outcome of ( ventilatory care for the elderly remains. c) Age Knaus studies have identified age as an independent risk factor, presunaably related to, _d physic~~ic reserve to a given disease pr~~l study in the very elderly, however, suggests that many critically-ill pa tients over 75 years of age do benefit from RICU care, including in-hospital prolonged ventilation. Very few if any of this age ~roup could func tion independently if confined to a ventilator-dependent lifestyle. None of our patients received any ventilatory support outside of the RICU. There may *8yr1ck's study has been since published: Mclean, R.F., McIntosh, C.D., King, 6.Y., Leung, D.M.W. and Byrick, R.J. Outc011e of respiratory inten sive care for the elderly. Critical Care Medicine 8:625-9, 1985 I '" \ \
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( OTA Task 4 Contract 533-4935.0 10/15/85 000379 -13 -be some elderly patients (aged 65-75) who could benefit from a home ventila tory support outside of RICU. These patients are rare among the large groups studied in RICU environments of acute care hospitals. d) Chronic Health Status The elderly have a higher prevalence of chronic debilitating disease pro cesses, which is a maJor factor limiting physiologic reserve and their capacity to live independently in a home-like environment. This emphasizes that age alone is NOT a factor or criterion on which we should limit the use of mechanical ventilation. Individualization of patient care planning is essential for long-tenn ventilation -whether in RICU or in a home care program. Many of the patients treated in RICU with prolonged ventilation have chronic debilitating diseases or irreversible disease processes that would make them inappropriate candidates f~r a home care ventilation program. Several authors (14,15) have noted a slight trend toward fewer RICU admissions above age 70. Campion (14) suggested that physicians may be less aggressive treating acute problems in elderly patie:>,cs; however, this may reflect the influence of chronic health status on overall decision-making. This will be discussed further under Task 5 of the OTA report. e) Therapeutic Modalities Available Physicians have been urged to "contribute more by doing less". There is no doubt that survival is not linearly related to resource utilization. In fact, Scheffler et al (22) have identified a U-shaped relationship between increasing therapy and the probability of death. The ethical aspects of the application of technology (ventilation) to the elderly is particularly /lf
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............. : ........................... ....................................................................................................................... ... \ (: OTA Task 4 Contract 533-4935 0 10/15/85 ooory0n -14 u '.1 troublesome to the cHnician. Simply because the technology is av.ailable, physicians should not feel compelled to utilize it inappropriately. Studies (23) show that a disproportionate amount of health care expenditures occur in the last year of life. The increase in the use of hospital care in the last year of life did not begin in-the USA recently, but in the mid-to late 1960's, after the introduction of Medicare and Medicaid programs. This suggests that availability of the technology may be a factor. There are no data that I am aware of which suggests this trend inappropriate for the severity of illness. Scitovsky (23) suggests that the increase in resources used in hospital (including ventilators) has been proportionately the same for patients who die and those who survive. -CONCLUSION The detrimental physiological effects of prolonged ventilation are minor, and most patients adapt spontaneously_ to respiratory support. The implications for elderly patients' prognosis will largely depend on such factors as the reversib1 .. y of 1.~e pri,nary disease process, severity of illness, and chronic health status as described. Our study (Appendix) suggests that in-hospital prolonged ventilatory support can result in elderly long-tenn I survivors w~o live independent lifestyles that they consider satisfactory. The rates of recovery from specific disease processes vary with associated factors, especially severity of illness. In our own experience, very few elderly patients who are ventilat~d long-term in RICU are candidates for pennanent ventilation.
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( OTA Task 4 10/15/85 Contract 533-4935.0. 1dJ-O 03 [; 1 3) Physfologfc effects of mechanical ventilation; prognosis, need for further S!!! (Goldberg, Indihar) Patients who require mechanical ventilation generally fall into two major categories: 1. Those who can reasonably be expected to be weaned from ventilation. 2. Those who cannot be reasonably expected to be weaned for mechanical ventilation once it has been applied. The physiologic effects will be different according to the category. In those anticipated to be weaned, mechanical ventilation is used to reverse acute single or multforgan system failure and to "buy time" for this to happen. When oxygenation and ventilation are improved, the brain is pre served, and the heart, kidneys, and other vital organs improve their function. This improved function pemits a more rapid recovery from the acute illness and return to previous health. In those not anticipated to be weaned, mechanical ventilation fs used to augment or replace natural efforts to breathe. Under these circumstances, improved oxygenation and ventilation will enhance mental function (in:._~a!.e clarity cf thought, level of awareness, state of alertness) as ft improves the function of other vital organs. One result of ventilatory treatment is an improvement I fn mental cJmpetence which is due to improved gas exchange that was not the case during ventilatory failure. The physiologic result of such use of the ventilator is a more medically stable patient who requires less diagnostic intervention or major changes in therapeutic management. Such a patient is then a candidate for transfer to an alternative location with less costly I technology and caregivers~ It fs possible that with more time and rehab111tati.on, such a person may also improve to the point that they may '"\ I /fl
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. ..:M'llt&lltta,._li:IH,.ililtltlnahfMHielMi-b&NUWMMttt!tltltttfH ft! hi tft I r'ltftldtftltttl ht1Hbitttlt04t1Mtttsltftt>G I Ito I 1 ftftftttlMM I cttl?C 1 ht ti OMMNM>GD1t1Ht&NHNMadMNMl .. t.M~~w_,w_, ...... __ I \ .,.. .. OTA Task 4 10/15/85 Contract 533-4935.0 0 0 0 9 i-... -16 ,.._....., become free of life-supporting technology. This would result from a period of medical stability that was made possible by prolonged mechanical ventilation. Not all physiologic effects of mechanical ventilation in the elderly are clear-cut. Persons with advanced age are always at risk for complications of their basic disease. The use of a venti~ator predisposes a patientto immobility; this increases the risks of phlebitis and embolization. With chronic ventilator use, the return of blood to the right side of the heart is impaired; this can lead to chronic right heart failure. However, this effect is balanced by improved pulmonary blood flow due to reversal of hypoxia and hypercarbia The prognosis and need for further care will also depend upon the category. For example, a younger adult, with a high cervical cord transection, resultant quadriplegia and ventilator-dep~ndence, cannot be reasonably expected to ever be weaned. from mechanical ventilation. This is similarly true with progressive neurological diseases and some patients with severe chronic obstructive pulmonary disease. Most patients with acute respiratory failure are /considered to be "weanable"; the ventilator is utilized as a temporary measure. Later, it may be distovered that, due to the patient's underlying disease process (severe emphysema, lung fibrosis), weaning is impossible. In both categories, consideration of ultimate outcome must be considered before application of the ventilator. However, in most instances, the prognosis is virtually impossible to predict, particularly in the .. '\ \ I I I
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. '-K'lllitnSSt'citH:ltl>l'IWMiila.tt\Klt&6bli>il'1111ib'U1ilMit'IUi\laltti:bebliSttrNi1N't#tfbc'SINMi:il Mrft'trt41'tt ti,1' ')')ltfXMt'I Hf ft't11'i1i._6ti1 tt1tttltlWttnl*tUI ,., ... u.,.. .... ,..,..,.,,..wu..,.ttMMtfHtt I ftfblt't':'t'n 1i~,.,~_.;,:,.1. (: OTA Task 4 Contract 533-4935.0 l0/~5d963 83 -17 -emergency sjtuation where the ventilator is applied as a short-tenn neccesity and, unfortunately, the patient subsequently is not weanable for one reason or another. The prognosis depends upon the disease process. Younger patients with high cervical cord injuries, quadriplegia, and ventilator-dependance will have a virtually normal life expectancy. However, the patient with chronic obstructive lung disease, emphysema, and ventilatory failure requiring ventilator assistance will more likely be elderly and have other disease processes expected with age. Generally, most of the patients who require mechanical ventilation will have a significantly shorter life expectancy than their non-ventilated counterparts; however, many of the patients residing on the Prolonged Respiratory Care Unit (PRCU) at Bethesda Lutheran Medical Center, St. Paul, Minnesota, have been ventilator-dependent for 4-5 years. Patients with neurological degenerative diseases (amytrophic lateral sclProsis) gradually succumb to. -the ravages of the primary neurological disease process and nJt to the rd~piratory failure which initiated t,. ventilator support. These patients often live for 2-3 years once the ventilator has been applied. 4) .Rate of survival, death; dependency on mechanical ventilation; deg~ee of dependency (Indihar) The experience from the Bethesda Lutheran Hospital PRCU indicates that 35.SS of the patients died while on the unit; other patients have been discharged to other care facilities and have died there. (See OTA Task 2: Rehabilita tion Statistics from the PRCU). Such patients were, for the most part, \ /0
PAGE 187
~ww .. wwWW~w-,w~_,...,._._...lilia~WWWW'6-.t'N'NliWMii'tnitnit't6t't't''ti 't,'tnla't' ft't bt'tift t t't t'td 'tf I tit t I tw-,h-.U6MWI MMMtet.-... t t loWutM MM 1 HM CM Ht MMMI 1 II .. OTA Task 4 10/15/85 Contract 533~4935.0 -18 -0 0 0 3 8 4 ( ( ( elderly, with chronic fibrotic and/or obstructive lung disease, who suffered from irreversible disease processes. Ventilator-dependen~ elderly survivors were virtually unweanable and remained dependent on mechanical ventilation regardlessof the efforts of staff and patient. The underlying medical condition was generally too severe to-be alleviated through nonnal weaning techniques. Also, the majority of these patients were usually ventilatordependent 24 hours per day. Small incremental periods off the ventilator could be achieved; perhaps the patient could even be off the ventilator in rare instances forwaking hours. However, the ventilator was, at a minimum, required at least 12 hours per day in virtually all instances. Indihar's elderly survivors often had an elderly spouse and no other primary caregiver available. Thus, existence out of an institutional or conmunal living -situation was very difficult to achieve, but not totally impossible, given an adequate home care support system. The most essential requirement was a non-professional, personal care attendant who worked under the supervision of health care professionals. 5) Impact on functional ability (lndihar) If the pat1~nt remains on a stationary (console) ventilator, ventilatordependence virtually inmobilizes the patient. Logistical constraints (the tubing) prevent any more than the most limited activity (i.e. moving from the bed to a bedside chair or conmode). Of course, the patient can be placed on a portable ventilator, which is quite mobile. This device can be placed on a small table, or moved from place to place on a specially-built rack which is part of a manual or patient-driven electric wheelchair. "", \ i
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( d tfNS .. .,.,...... ... ----. ~. -.,......_.,....,, OTA Task 4 Contract 533-4935.0 lO/lS(fb O 3{; 5 -19 -Portable ventilators cannot be used as the primary ventilator, because there are insufficient alann capabilities, and humidification cannot be readily adapted to these machines. But if the patient is under close observation by another person, the portable devices are quite safe for short periods of time (1.e. up to.4-5 hours), thus permitting mobility and a-wide-variety of activity. Acute respiratory failure is a life-threatenting situation; mental function is not appropriate or reflective of the patient's fullest potential. In addition, this is an emergency when decisions must be made with a great deal of prognostic uncertainty. With chronic respiratory insufficiency, mental competency is difficult to judge in patients, whether ventilated or not, who -are hypoxic or hypercarbic, particularly those with chronic obstructive lung disease. Although each individual tends to respond in a unique way, even hypoxia (lowered o2 ) or hypercarbia (elevated CO2 ) to a mild degree tends to decrease mental functioning and decision-making. However, such hypoxia and hypercarbia can be r. ~rst~ ~, optimal ~ent1lation and s~~plemenca, GXJ9E often with an improvement in mental function. According to lndihar, the mental competence of an elderly, ventilated patient is generally not unlike what would be seen in a non-ventilated person of compariable age, particulary when the patient is 0stable and not suffering from complications of a disease process (pneumonia, bronchitis, cardiac failure) which, by causing a fall in blood oxygen level, could result in confusion and even coma. It has always been Indihar's policy .. to allow the patient to make as many decisions concerning their own life as possible. Although judgment is sometimes impaired, Indihar has not found it to be that much different from any chronically-ill patient, young or elderly. ---~ \ \
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.iilfWMWIMMH~Nffim1fft'11t#WififttilififtfildtfMtit'tYJNWWemm'Yt57'i::eetMNMtMN!tttttMMfMMWitfMMMMMMMMMMMMMMMt'MtiMMMMMtfWWMXWMMl'NlftitilifilfW&Mt;ca,;ili, c. (~ OTA Task 4 Contract 533-4935.0 6) Technology: safety and risk (Ind1har) 10/15/85 20110038(; According to Indihar, ventilators are quite reliable, given a reasonable maintenance schedule*. Battery backup in the event of electric failure is available for all portable ventilators, and replacement ventilators** are generally imediately available from reputable home care providers within a short period of delivery time. Likewise, compressors, humidifiers and other ancillary pieces of equipment are quite basic pieces of machinery, and, with adequate maintenance and replacement schedules, can be expected to perfom reliably. The sources of oxygen have generally been considered to be the most dangerous piece of equipment located in the patients room, particularly if the patient is not in a institutio~al setting where the oxygen source is likely piped in through the walls from an external bank. There are potential risks of inflamability, leak, or explosion from gas under pressure if the tank is not handled properly. Most patients and their families dislike the concept of a large and dangerous oxygen tank in their home. However, given proper precauti.ons, these tanks are quite safe. *Although routine maintenance is done. there has been an increased incidence of sudden equipment failure in my own experience and in that of physicians, respiratory therapists, and consumers with whom I network. This matter has been brought to the attention of the ASTM, F-29 Conmittee. (Goldberg) ** Depending upon the medical conditions, it is necessary to prescribe more than one ventilator because of life-threatening risk of sudden equipment 1111lfunction. I have not found that having this ventilator out of the home to work out satisfactorily. (Goldberg) ... /" \
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... .-rtff 11 lllliN~ ................. .._,.. .. ,..,_,_.......,.._......_..........,.._............-ib .. M "6NN-. .. MN.._ ___ ..., ........ "" .................. ........ ( OTA Task 4 Contract 533-4935.0 210-0 0387 7) Medical Outcomes at Goldwater (Alba) Goldwater Me1110rial Hospital in New York City is a 910 bed facility, which has specialized ;n long-tenn rehabilitation and treatment of chron;c illness.* As a regional referral center for rehabil;tation, the kinds of patients are different from that in the acute general hospital. Goldwater accepts patients with chronic conditions from the Greater New York Metropolitan Area and beyond.** Ten percent of Goldwater's patients have tracheostomies, and 16S require tube feeding; both categories usually stay at Goldwater for the remainder of their lives. A large majority of the patients who are admitted to the ICU for acute intercurrent illness from other areas of the facility (Skilled Nursing, Rehabilitation Medicine, Long-term Medicine) already have moderate to severe congnitive impainnents. It is the impression of the Director of Intensive Care that, excluding patients with COPD, approximately 1/3 of the patients admitted to ICU for mechanical ventilation will survive.*** Approximately SOS of these survivors will remain on prolonged mechanical ventilation for an undetennined lingth of time. The majority do not return to their basel ,ue J,hysical and mental functioni .. ,... Th dat~ the exact number of ir.dividuals who were admitted to the ICU as ventilator-users, or who became ventilator-users in the ICU and then died, will be obtained for OTA Task 3. *Medical outcomes of patients at Goldwater are also discussed in part in OTA Task 2 (Description of range of patients). **At any one time, there is a 50-75 patient waiting list to enter Goldwater by similar ventilator-users from the acute hospitals in the Greater New York Metropolitan Area. ***There are approximately 200 deaths annually at Goldwater; 501 of them occu~ in the ICU. /fl
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( OTA Task 4 Contract 533-4935.0 10/lj/.~5 UU038S -22 -For patients who are maintained on long-tenn ventilation primarily because of either chronic intrfnsfc lung disease or neuro-111scular-skeletal diseases, the prognosis is quite favorable. The C0PD patient may go in and out of ICU several tf111es during their stay at Goldwater. They my be weaned, or partially weaned, again and again, depending on fntercurrent infection and other factors such as concurrent medical illnesses. The majority of C0PD patients at Goldwater must remain there; they are over 65 years old, mentally competent, and lead a satisfying life within the rehabilitation milieu the hospital provides.* Our Chief Pulmonologist estimates that the lifespan of th~ C0PD patient following admission to Goldwater with advanced disease is anywhere from -1-10 years. (Very complete statistics will be provided for OTA Task 3). The majority of these patients are capable of partial self-care. In addition, there are approximately 35 patients with neuromuscular disease at Goldwater in the Howard A. Rusk Respiratory Rehabilitation Service. The majority will survive an admission to the ICU with cognitive abilities intact. About Most patients from the senior citizens group who need or are on mechanical ventilators are mentally intact and WANT TO LIVE. They have had productive life in earlier age. They have paid taxes, built the prosperity of this country, raised family, paid for the education of the younger generation and have served their country in many ways. It will only be fair that their fellow men give th the chance to live as long as they enjoy life, even ff they are on mechanical ventilation. My 9 C0PD patients are alert and bright and, in the past, were professionals. Unfortunately, they either have no family, or their families fear taking them home or caring for them. There are no health related facilities or nursing hmnes which are equipped to take care of patients on respirators" (Lilia C. Gay, M.Dc, Attending Physician, Department of Medicine, Goldwater).
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( ( t t ttttttMM .... OTA Task 4 10/15/85 Contract 533-4935.0 -23000389 15 ventilator-users per year from this Service are able to return to live in the c0111111nity1 either with fily, or independently with the assistance of paid caregivers. The nmber of ventilator-dependent patients with neuro muscular disease who are 65 years old and discharged to the c011111Unfty is less than one/year. The elderly patient has characteristics of the lung that increase risk for infection. Specificall_y, the closing volume (volume at which small airways tend to critically narrow or collapse) becomes smaller with age. If the elderly person has increased mucous (bronchitis, COPD), or reduced strength (neuromuscular weakness), secretions may be retained and cough impaired. These secretions must be mobilized and removed or they will lead to further collapse of segments of the lung and infection. If the elderly per-son requires prolonged mechanical ventilation, proper upper airway manage ment (chest physiotherapy, suctioning) will be essential to clear these se cretions. The prolonged USP of a ventilator in the proper way will expand the lung and reduce the likelihoo~ Jf in,actic~. There 4 ~ no reas t~ .. cipate an increased risk of infection with time because of the ventilator per se. However, the risk is increased from antibiotic-resistant bacteria which are 1110re likely found in an institutional or nursing home setting. There is no critical 1110111ent or duration of time beyond which risks of prolonged mechanical ventilation increase or change provided that all involved are well aware of the te~hniques and technologies involved. In fact, risks are less because the patient is more medically-stable. However, there is a risk with the long-tenn ventilator-user (lOS vital capacity and ; --.--.. --,1-~ l f ti~ I ,, I .. :,. ... \; /II
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. Mt'XXdttMYMttXtMXMttnMM nttn: tt ttl tttt : tttt tr: r tt t ttt t n M 1 1 .,. l. C.. OTA Task 4 Contract 533-4935.0 10/15/85 ao 0 O Ol~ -24 requiring ventilation 24 hours/day) of anoxic encephalopathy occuring during inter-current massive respiratory infection, or during resuscitation from inadvertent cardio-pul110nary arrest. Such patients may not be rendered brain dead by these insults, but may remain either in a semf-c01111tose or comatose condition for many months or even years. With the law as ft stands today, such patients must be maintained on ventilators until death from other causes. It is the feeling of medical staff &t Goldwater that the use of mechanical ventilation to prolong death rather than to sustain life in such situations is an abuse of technology. Portable ventilator equipment is rapidly becoming more sophisticated. Many elaborate alarm systems have proliferated, and with proper maintenance, these -devices are becoming safer in the home.* Staff must constantly reassess the types of ventilators being used by each patient. Multiple factors must be taken into consideration. It is reconnended that the Bio-Ethical Conmittee of the Medical Board take an active role in working with the medical staff on thes~ issues. Misks are greater outside the ICU, but the lifestyle of the individual is eminently more satisfactory, unless requiring an ICU for critical illness. The patient, where possible, himself must be actively involved in .decision-making on the type and number of ~entilators and alanns. *As a student of Dr. Alba-and frequent visitor to Goldwater, I must state that the major reason why this equipment is safer there is because it is used and maintained by a center of expertise. (Goldberg) .... \ !Pd
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(_ OTA Task 4 Contract 533-4935.0 B. SOCIAL, PSYCHOLOGICAL, ECONOMIC OUTCOMES 10/15/85 -2sU00391 The questions raised by OTA about social, psychological and economic out cmnes have been answered by three expert authors with multiple perspec tives: Dr. Robert Byrick Authority on outcome analysis in an acute ICU Margaret Pfronner -A ventilator-dependent adult for over thirty y~ars; an authority on technical aids (Department of Rehabilitation Engineering, Northwestern University Medical School); and President, Illinois Congress of Organizations of the Physically Handicapped (COPH) Gini Laurie Editor, Rehabilitation Gazette and Founder, Gazette International Network Institute. An authority on independent liv-ing for disabled persons and the resource person for over a generation regarding prolonged ventilation issues. Due to the nature of the responses, they are presented according to per spective. In addition, connents from other a'rit;'(\S have beer. int:,..!dea to assure a balanced discussion. Psychosocial Outcmaes (Byrick) There is little data in the medical literature on the effects of prolonged ventilator care on the psychosocial adaptation of elderly patients and families. Subjective studies by Campion et al (14) and ourselves (24) suggest that elderly patients who have survived prolonged ventilatory support during critical illness in h~spital can function as well in society as younger patients. In an effort to specifically examine this issue in an
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At r ,o oo ,,,i:drt:ttt~ ..... _...,tchd 'tftd )#)' ) II I a111t1 tt:a I I t llMWllilW ............ W&, .. ... N 1 ('"' OTA Task 4 10/15/85 Contract 533-4935.0 26 _o o oan 2 elderly population (greater than 75 years of age), we asked survivors if they would undergo the same treatment again. The vast majority of these patients wanted aggressive ventilatory care if confronted with similar circumstances (Appendix). This suggests that prolonged ventilatory care by itself is not uncomfortable nor particularly distressing from a psychosocial adaptation point of view. The major psychological factor to stress is that prolonged ventilatory care could cause a failure to confront death when it is inevitable. In these circumstances, irreversible disease processes, which ultimately will lead to death, could be treated (inappropriately) by mechanical ventilation and associated supportive techniques with no hope of achieving an i,ndependent individual. Such situations must be minimized to reduce the negative impact on patients and families who must confront the decision to "let death come". This inappropriate use of prolonged ventilation 1s primarily an in-hospital issue at this point in time. The primary causes of employing life-supporting technology 'in circumstances where ft is "medically useless" (25) may bP. a combination of sue~ factors as: 1) 2) 3) 4) 5) 6) 7) phfsician attitudes, { legal uncertainties re: responsibility, resource availability, ~edical inexperience, prognostic uncertainty, lack of "withdrawal of care" protocols, and I ; patient "1nfonned consent" issues. .. --.. ...... / I I ', :
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,Wt tf) )') t t ttl ............................ ww,e_, _,_..., ~) .~ .. ~- ------_ .......... _._,. _,..._...~'il_."-..,,."'"'''W~w,,.,,,~ ... -., ... ,,,~,,._H1Jti-"'uw-.., .. ,., ... ,, ............. __ .,. .. .... ______ .. '""---- .. .,._ ........ -,.,_ ...... ( OTA Task 4 10/15/85 Contract 533-4935.0 900333 -2 -These issues are particularly troublesome in the critically-ill where ex isting data cannot predict outcome with certainty. One urgent need is for education of both medical and lay c011111unities concerning realistic expectations from medical care.* Although survivors in our study considered RICU care worthwhile, we cannot estimate-the psychosocial hann inflicted on the patients who died by prolonged ventilatory care. In a general open-ended questionnaire, we assessed the ability of survivors of RICU care to function in society (24). Their level of social activity was satisfying to them, and most were functioning at a level comparable to their pre-morbid status. This is particularly important in the elderly population, as they were not fully active and independent (Appendix). Since most of these patients had chronic health problems before an acute exacerbation or illness, the most important factor was that they beHeved that this level of activity was worthwhile and satisfying. Make et al (,o) anu Goldberg (27) have documented s.1.1~ar P~i<-h~~ocia" tation of patients to a chronic ventilator-dependent lifestyle. I have no experience with this type of patient, but can only emphasize that very few I I of our elde~ly survivors could independently care for themselves if ventila. tor-dependent. Hughes (28) has stressed some potential problems with a home-*Such an effort is currently underway by Sister Corrine Bayley, CSJ, Dir-.. ector of the Center for Bioethics, and Vice-President, St. Joseph Health System, Orange, CA. In the project, California Health Decisions (Involving Citizens 1n Health Care Choices) ,'.at "town hall meetings", the questions are asked, "Are we obliged to:prolong life with every means at our disposal? If not, when should we stop? Who should decide? (Appendix) ... \ /93
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( OTA Task 4 10/15/85 Contract 533-4935.0 0 0 (i' ,r._ : I A 28 V i_i t ventilation program. By extending such resources outside of the RICU envirornents, the health care delivery system is also extending the potential for psychosocial maladaptat1on and extending ham. If the resources are widely available in a relatively unsupervised fonnat by inexperienced clinicians, there will be individual cases where the technology is applied inappropriately. This will be costly from an economic point of view, but th~ greatest harm may be in extending unrealistic expectations within society. This emphasizes the conclusions of Goldberg (29) that regional centers should be established with well-organized support staff.* By using the regional system approach, the selectively small number of elderly patients who can benefit from a home ventilator program could be followed and such psychosocial factors as depression and suicide could be minimized. Economic Outcomes (Byrick) rhe medical literature is replete with data verifying the fact that pro longed intensive care (including ventilatory support) is very costly to the health care delivery system (4-8). In a preliminary study done in our RICU, 80 per cent _of the non-physician costs were salaries. This emphasizes the need for sophisticated nursing care and respiratory technologists to support mechanical ventilation in intensive care settings. *Such centers provide many other benefits including quality-assurance, case-management, care-monitoring, and cost-savings. (Goldberg) ,,
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, \ (~ .... OTA Task 4 Contract 533-4935.0 10,w,~~a 95 -29 -An instructive study was perfonned by Detsky et al (30) who showed that the most expensive admissions to ICU were those with unexpected outcomes. This emphasizes that the cost of ventilatory care in-hospital is directly linked to the issue of prog,,ostic uncertainty which has been discussed previously. Cost-containment policies for ventilatory care require better prognostica tion by clinicians to limit provision of these expensive resources to patients who can truly benefit from such care. The cost of long-term ventilation outside of RICU settings is substantially less than that documented in RICU. However, one must recognize that in creased provision of home ventilator programs will not substantially reduce health care costs in acute care hospitals (31). The majority of ventilator-dependent patients in acute care hospitals are not candidates for a prolonged ventilatory dependent lifestyle. This is particularly true of the elderly subgroups who have a high incidence of significant co-morbid conditions necessitating care in RICU settings (for Pvample renal insufficiency, dementia etc.). These disabilities would m, indeper: living with a ventilator improbable. Although the direct costs of a home ventilator program to acute care facilities will be less than RICU care, such indirect costs to the health care system as home visits by nursing personnel must be considered. There may also be economic costs to families in tenns of lost income, and living
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. ,..w.,w .................... ............................... ,..,..,.., __ ...,_ .. ,,,," ,~,,'" .... .. .. .,,,,.,. ... .,,,., .......... "",.,..,,,,,,.., .. .,. .,,, ..... ..... ""' ........... ..,,.., ... "'"' 111 ....... .. ,..., .. """""'""""''""'w-, .. ,www .. ,w ..... ..., ...... ...,...,__..,ww .. .. w .. ww ... .,w..,,w., ... ,_,., .... ., .... .., ... ... .. ,.,1.,, ........... ,, .. ( ::, (: . OTA Task 4 Contract 533-4935.0 10/1s1~ o 3 9 d -30 -space in the home. These factors will be discussed in detail by other contributors to the OTA report who have experience in this area.* 3) Social, Psychological, Economic Outcomes -The Consumers' View (Pfr011111er,-Laurie) "Over the next 50 years, the Census Bureau projects that the number of Americans 65 and over will more than double from 26.8 million to 65.8 million. As a result, programs designed for senior citizens could comprise as much as 65 percent of the federal budget compared with almost 28 percent today Key issues over the next 50 years will involve housing and health care. Even with medical adv~nces, a segment of the population, especially those over 85, will have disabling diseases."(32) As noted in OTA Task #3, a small number of elderly persons will require either temporary or long-term mechanical ventilation. These elderly persons may include some who are previously in good health, so~e with simple. .or t.omplex acute and/or chronic health problems, and ev.en .those with *There is ari increased utilization of energy; electricity and heat is used around the clock for equipment and/or needs of caregivers. Often, there is an increased tax-assessment of a house which has required modification for increased living or storage space. Some situations require modifications of the dwelling and/or transportation vehicles for assessibility and/or heal.th needs (e.g. a van may be required for assessib111ty to health care). All of .these represent costs which are health-related but not directly reimburseable. Thus, they represent indirect costs which add to the burden of 1) high co-payments requested of families and 2) less than comprehensive reimbursement by public agencies and private insurance. Most families do not have the money to pay for these indirect costs of home care. (Goldberg) l?b
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,cftk226iMnftfMMtf ft!Mnt8MHidiltlttttBkMHtlt04ihtfttthft!tftftdtftlMHtftftftlt1MMt'tftftr ftfHHt'H )11th .. ,., 'Mr) ') tW I ,.. lil4l I tr M 1 M 1 I 1 CH ( 11' 'I I 'a '" .. : ... .... ; l C OTA Task 4' 10/15/85 Contract 533-4935.0 31 _o o 03 9 7 terminal illnesses. If an elderly person needs th;s support in an acute situation, and they do not receive it, they will not live as long. If they do survive, they will not be as alert and sensitive to their surroundings as they could be, and their physical condition will deteriorate much more rapidly than tha~ of those who enjoy the benefits of sufficient ventilation. There are many issues that our society has to face in regard to this population: Is this population (of which any one of us may become a part) worthy of our special attention? Is it important to have a Grandma, even if she is on a ventilator? Are the experiences of a wheezing old man beneficial to the young man? If these persons are of value, than we must muster all resources to enable such elderly persons to have at least a minimal quality of life. Life-supportive technology has saved and prolonged the lives of many people of all ages only to relegate them to acute care hospitals or nursing homes; only a few have had the opportunity of the transition to home, a congregate hot.~i,,y ar, c.~gen,, ~, f.'r h'-~ri, p. ogram. The challenge created L., erson. who require prolonged mechanical ventilation 1s one of providing more of them with options which will consider their safety, their need for individual I life styles/and a comfortable death with dignity. The following case history dramatically demonstrates how this can be done: : A 70 year old female first visited her pulmonologist in December, 1979. She was a retired school teacher with a history of severe, slowly progressive chronic o~structive pulmonary disease. From 1979 to April, 1984, she had a protracted and steadily pro gressive illness. D~spite optimal medical management which included home oxygen, she continued to de~eriorate. The patient lived with her son, daughter-in-law, and their 4 children. She had 3 .other children, and many grandchildren. Despite her physical ~ ........ .. -. --------..... I ( .:! r . -~-""" \ \ '~ 7
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( ., __ ( OTA Task 4 Contract 533-4935.0 1 Oll 5,QJJ O 3 9 s -32 -impainnent, she had a good quality of life in her loving environment. The patient had made it quite clear to her pulmonologist and family that she did not want ever to be kept alive by heroic or artificial means; specifically, she did not want to be on a respirator. On 4/1/84, she was admitted to the hospital ICU with pneumonia. She was severely hypoxic with PO in the 40's desp.ite all therapeutic efforts. The pneumonia progressed; she got weaker, had more trouble with secretions, became extremely short of breath. Smothering, she could not rest and was very uncomfortable. A consultation was held with the family. Theywere told that all was being done; there was nothing else to do except intubation and mechanical ventilation. The patient had stated her objection to this. The family had a lot of difficulty watching the patient fight for breath. They asked about the reversability of the dis ease and likelihood of getting off the ventilator. They were told that pneumonia was potentially reversible, but that the inability to wean was a possibility. They requested that the pulmonologist talk to the patient. Despite the fact that the patient was hypoxic, she was alert and fully comprehensive of what was happening. The situation was fully discussed. Because of extreme discomfort and shortness of breath, she accepted the slight chance that her pneumonia could be cleared and she could be weaned; she elected for mechanical ventilation. Subsequently, a prolonged hospital course ensued. Despite efforts at optimal ventilation, antibiotic and bronchodilator therapy, pastoral and pscyological counsell i.19, and a variety o,f weaning strategies, the patient was unweanable. The patient was now considered on prolonged mechanical ventilation, and home care was entertained. Because, of an excellent home environment with people who were lov ing and willing to care for her, the patient was sent home. Her care was provided by family members and sitters brought in by her family to supplement their efforts. On occassion, the patient had physical therapy and the consultation of mental health coun sellors and home care nurses. Living in her own specially-adapted room, the patient's interest in life returned. She spent much time with children and grand children, celebrating all holidays with her loving family. She began reading again, listening to music and watching TV. She resumed interest in her business holdings, and began again to plan her own affairs. The pulmonologfst made many home visits. He observed her spirit and the quality of life she was enjoying. Once, he brought a
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( OTA Task 4 1 0/ 15/ j~. 0 Uu ..J99 Contract 533-4935.0 33 pessimistic member of the Board of Directors with a special in terest in geriatric and medical ethics. After the visit, the Board Member conmented about the patient, "She is radiant! u On 2/9/85, the patient passed away in her sleep. This was 9 d~ys short of 8 months at h~. This period at home was one of quality, love, and involvement in her surroundings. There is one case-example in our society which presents evidence that pro-.longed mechanical ventilation is appropriate and acceptable. The ventilatory experiences of individuals disabled by respiratory poliomyelitis encompass both those who have been users for more than 30 years, and those, weaned years ago, who are now returning to ventilatory assistance at night to compensate for decreased respiratory function due to aging as they approach the status of senior citizen (39). With some exceptions, the fomer polio survivors on mechanical ventilators have lived at home with their families since the early 19501s when they acquired polio as children or young adults. The majority are employed and pay taxes. They are married and have children and grandchildren. They buy homes and cars. They travel. They have bP0n t..a~ir own case-n,a .. 11ge1 .'1d have assu c.J ventilator maintenance. Their a. ~es are proof of the potential of ventilator-users to live fully and productively in their conmunitfes ff they have adequate support systems (39)*. *My personal physician is such an ind.ividual. In his late 'SO's, he prac tices medic.ine full-time and has done so for over 30 years. He uses mouth intermittent positive pressure ventilation in his office practice and sleeps -at home or during travel to medical conferences in an iron lung. I have chosen this physician because he has taken the time to keep up his educa-tion and he listens. (Goldberg)
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( OTA Task 4 10/15/85 Contract 533-4935.0 JJ'"\ ,, n .. {'_ 0 ~1 1../ '"i V 3 -The following case history illustrate one woman's adaptability and potential: E.T.H., Artist, ballet teacher, and choreographer. Now in her early 601s, she has been a respiratory polio quadriplegic since 1953. A former Sadlers Wells ballet dancer, she teaches ballet and liturgical dancing with the assistance of a remote-controlled tape recorder and portable voice amplifier. She paints with the brush held between her teeth. During the day, she uses glossopharyngeal breathing and works in her own home with the help of attendants. At night, she returns to her iron lung in a nearby hospital. Her situation, as well as that of many other polio survivors, demonstrates that persons on long-term mechanical ventilation have not only survived, but have thrived, in settings outside of hospitals and nursing homes. By their learning experiences, we have been able to determine that (1) they had a safe transition to home, (2) their living has been less costly than in institutions, (3) they have needed some kind of corrmunity service support, and (4) they have exhibited a variety of life styles. The same resilience and self-direction of their own lives is demonstrated by ventilator-assisted individuals with myasthenia gravis, high-level spinal cord injury~ amyotrophic lateral sclerosis, muscular dystrophy, and other neuromuscular diseases. The following case history illustrates this adaptability and potential:
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. .. u\9'W,~ ......... ,,,:,,w~'h"-H''''-.""'" .... \.NM"'-''.;,w.i .. ~~~i.,,.h,hh,h1Wh,hhh,IU\,ll,l"')'"""\.~h,hl,,h.h1,1..Xh,\\.lt.)U1,hh)'-h~Ka~ltuUUOdMt ..... >tMHMetH f 1 t1 tftdtl>f ....... WVlllltiW dtftt ,,..,~ ... OTA Task 4 Contract 533-4935.0 Q.G. Retired executive and gentleman farmer. In his mid-60's1 he has been disabled by amyotropic -lateral sclerosis for more than eight years. He is dependent upon a ventilator fulltime. He lives at home with the assistance of his wife and a daytime nurse. They travel in their specially equipped motorhome. 10/15/85 3~-00401 Does this positive experience for over a generation with prolonged mechanical ventilation of these survivors of polio and other neuromuscular disease have relevance to issues facing an old person? The answer is yes. According to Make. the patient with neuromuscular disease comprises the majority of long-term ventilator users; there are very few centers with programs dealing with COPD, and they are represented in this OTA survey. If an elderly person requires prolonged mechanical ventilation. the above experience relates that this can be accomplished and what is needed to do so (medical stability, an acceptable social situation, an appropriate environment, sufficient support ser~ices and funding). As Byrick stated, the older person with multiple system vs. single system involvement will not achieve this stability or likely survivr. Howe.ver1 if thev do, the "eds becomt! less med ,cal anrl ... social. The older person is less likely to have family members who can serve as caregivers. and they may need non-professional personal care attendants in order to funfti on in activities of daily living. This was exactly the I problem that faced the polio survivor of the 'S0's as a young adult. It is of great value to analyze the syste~ that was put in place for such patients, for such a .system is needed again today for young and old alike.<39) The negative impact for prolonged mecha~ically ventilated persons living in ( _: hospitals or nursing homes applies regardless of age. Care 1n a hospital .... setting is h1ghly-sk111ed, but the environment as a whole intrudes upon the I
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,,., ........ .,.,.. -,~ktiillbf "a..t ............. t:)w.-,IAW -,ww.-,w p( -,11Qtf1ft1De ila.:I .... ~...,...._,ww.,_,wwwwuwwww",wwwvwwvw .. ,w~wwwwwww....,. .. __ ._,...,., .......,. ......................................... ....... ......... "'"'""''"''" ................ ( OTA Task 4 10/lS/85 Contract 533-4935.0 3JLO O ~1 0 2 privacy and dignity of the individual. The most significant diffe~ence between institutional living and home care, as stated by fonner patients in both hospitals and nursing homes, is that when persons enter institutions, they come under. rules and regulations that do not allow them to direct their own care. They lose control of their lives. "This atmosphere is noisy and the patient is subjected to frequent interruptions of sleep cycles. The most extreme example of depersonalization in the intensive care unit is the isolation of ventilator-dependent patients whose airways become colonized with nosocomial pathogens dangerous to other patients". (33) Sometimes families are discouraged by caregivers (physicians, nurses, social workers) who lack a positive concern for the right to a life of choice of the -ventilator-dependent person or a lack of understanding about alternative life styles, feelings, and values. These personnel, of which the chief decisionmaker is the physician, are almost totally influenced by the rules and regulations of the organizations for which they work or those of the reimbursement agencies. Further1110re, doctor~ d~ not always know who are good candidates for long-term ventilation. It is relatively easy to prescribe a respiratory program for persons with an acute decompensation, but it is mo.re difficult to deal with the chronically-ill who have used ventilator equipment for years, those who have not used it for a long time, and those who have never used it. For these people, the medical profession als need more awareness about these categories of respiratory care. A spokesperson for the Hastings Center stated on network television that the elderly are living longer lives, but not better. The emphasis in medical '" \ I
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>Mf8WrW91WftliMWa88ttilil8~.Wi:ft'tttW2ewettt1M8tfnt88MtltftfMMHHMt'lflWt6WS"11"1S:taidha616t9:0r\a:iUl'lllllt'CtttU6aiMtitftft tiMt t'HMb rtr )')ft' t ftdt slMtfHtft )'11111110 .. W..-", b#t I~, .. It htrltfHt ,.,..,,, .. .., ,,. ( (.' OTA Task 4 Contract 533-4935.0 10/15f6 0 4 0 :J -37 -care in our society is on acute care, with little regard given to those with chronic conditions. Because of this emphasis, the potential is very great for improving their quality of life and that of those who are tenninally 111. Presently, they are too often "dumped into long-tenn care facilities (nursing homes). Nursing home staffs are usually poorly trained, and the number of personnel is inadequate to provide the individual care needed to ensure safety. A person with emphysema requiring treatments four to six times a day would not be readily welcomed in a nursing home; the monopoly of staff time would penalize the other patients. needing attention. A good program of home care far surpasses any care given by a nursing home staff. For example, a ventilator-dependent man in a nursing home complained that the emergency alarm on his ventilator rang for twenty minutes before a member of the staff responded, and then not because the ,staff member knew what the alann meant, but because the noise was irritating. It fs not very likely that such 19norance wou -.a occur i11 a t,omt=-car .... s ;~uation. If it is thought that the lives of persons requiring full-time mechanical ventilation will be better ensured in a:nursing home, there is repeated evidence to disprove this. The I Subc011111ittee on Long-Term Care, Special Conmittee on Aging, U.S. Senate, has reported that the Jorfty of nursing homes fail to meet standards of acceptability (34). There is repeated documentation to support the argument that persons with I varying medical conditions, with or without mechanical ventilation, can be transitioned into home care settings either at a cost equal to that in a i l r ..... .. '\ \ I
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OTA Task 4 10/15/85 Contract 533-4935.0. 3a DO 04 0 4 hospital or.nursing home or, more often, at a substantial savings depending on the status of the caregiver. For instance, 102 Medicaid patients re ceived home care services after leaving an Ohio hospital. This saved 60 per cent over the cost of care in nursing homes (35). To become more specific, a 63 year-old woman, receiving around the clock mechanical ventilation for respiratory failure due to severe bronchiectasis and pneu monia, generated monthly hospitalization charges of $20,000. In contrast, $10,000-$12,000 paid for her home care, including rental of ventilator., oxygen equipment and private duty nursing fees (36). There is even a more dramatic savings when the family plays a role in the honie care. "There was no statistically significant difference in mortality between patients cared for by registered nurses around the clock as compared to care by fily or nurse's aides.(33) Other savings can be effected when there are good connunity support services, and when equipment is purchased rather than leased. For example, a 50 year-old asbestos worker with asbestoses required chronic mechanical ven'ti~at~on 10 24 hours ~aily for three years in a hospital. Later he was discharged home and was ventilated only during sleep. His hospital bills were approximately $15,000 per month. At home, monthly expenses were about $350 after an Emerson ventilator was purchased for $3,500 (37). Although purchase of equipment can reduce costs, ft fs leased as a rule. A rather conmon complaint is that maintenance 1s more readily available for rental equipment than for machines which are purchased, a finding supported by Splaingard (33) ', /"\ I ., \ \ ,ie,/
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.4~11n,uooo,rtiUSdtOdtdtftdtdHMtfMMtd!dMtd ftftdtfHMMt"lf?ftit'tdtft bit td?'bd dtd O t tit t t:Mtf 1 bl tdt' 1t t )1 tdNN .,,. Ml IIM t 1 1 ct H 1 t f 11 tt M t t MMMNMHMtt f CM MNM ttt t ( '' ,, :~-:: I 0 OTA Task 4 10/15/85 Contract 533-4935.0 -39 0 0 04 0 5 Satisfactory transitions to home or congregate living, have been accomplished when (1) the elderly ventilator-dependent person was as actively involved as possible in the planning process, (2) the family and/or friends had a high degree of c011111itment, (3) government and c011111unity support were identified and mobilized, (4) caregivers were well-trained and dedicated to the idea of mechanical ventilation and the alternative living concept. The elderly person must receive all infonnation given to the family and/or alternative caregivers, and be involved in the training sessions. The person should receive rehabilitation in the sense of learning to do as much for himself/herself, physically and organizationally. A respiratory therapist, whose job it is to transition persons from acute care facilities to alternative living arrangement, estimated that the elderly constitute about five per cent of her patients. About one third were placed in long-term care facilities, and two-thirds were cared for in private homes. Failures occur when the family is not truly conmitted, but accedes to the w1 .. es elderl.) 1 sons out uf a s .1!)~ t .t, er"' ~a the elderly h&s no desire to live with the technology that sustains them. I I Families exposed to the highly skilled nursing and life-sustaining tech. nology in a hospital setting are often overwhelmed and too discouraged to consider the possibility that they could play a successfu role in transi tioning a loved one to a home situation. However, the task is not impossible. Even older children have been known to help a younger sibling to be suctioned. This success is based on their instruction in good and bad technique. Families respond much better when they know there is some i l ... ''\ I ft>'>-1w
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, .... IIWWI ..... :..aht-'t !*'I .... a,_...,, -Wtf'-1 tiw.wH t~ftfM161jllWlljf tllollll ~-....d .. C C '6Mllt 1 ,.._. ~rtnt_,_ _____ _,.., -.-1111-.aw--11-ro-u 11_., -1 ---..wa.c 1-t ..... _, c, '-w..~w-,.wwww .. wwvw .. wwww .. -1w-w-. .. -...----- .. ~ ... ~ t ( C OTA Task 4 Contract 533-4935.0 40 coaaun;ty support: when the discharging hospital stands ready to provide on-going and emergency service; when there are reliable companies that lease and maintain equipment; when there are registries for nurses. attendants and/or health aides; and when there are public monies to support final alternatives to institutional life. With time, families find many unexpected be_nefitsfrom their home careex perience. In addition to that of settling into the more nonnal relationships, family members are relieved of the stresses and econom;c burdens of the routine trips to the hospital. Eventually, their increased sophistication and skills result in a great sense of accomplishment. Good caregivers are aware that. whenever possible, the ventilator-dependent person must direct the care. In the home setting, the caregivers are prepared to become part of the fy; responsibilities and roles are ex~licitly defined. Otherwise a great conflict occurs when the natural environment of the family 1s disturbPd. It is important that caregivers have good hands-on training to carry out I I such dut1es~s suctioning the airway, replacement of the tracheostomy tube, chest percussion and postural drainage, etc. They need to have conmunication by phone, or in person, with medical personnel who will answer any questions they have so as to relieve their anxiety and carry out a good program of care. Otherwise, care~ivers become fearful of life-supportive care, avoid this kind of ~ork, or respond inappropriately when they get involved. .... -.. ..' l 1 .'
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,'df:MttltWMkddiNHtftlMHHtWWftWe,ft'MMttt'JIHtfllMNMMHt't'XdMMXllMXMt'XWMMMMMt'MXMMtftaiteeeeill.iifldMMlldiHlflOtlOHMetltftht8$1dt#StttlilfMWttittlf (MtfX fttlt x:: tXtfMXlftfMXMXXrtl'ttiN8tft'titMti-'vi! .. .. : :~-:~;. ,.:\~~.~~~~~~~~~~-~~!~~--~:: ( OTA Task 4 Contract 533-4935.0 10/l~,04 -41 -0 i All caregivers involved also need access to the best current infonnation dealing with alternative options to institutional living and with coping strategies. They need to be aware that others who have been mechanically ventilated have achfeved independent life-styles, as shown in the following illustration of a ventflator-dependentperson who lived his last days at home: R.D.G. Physical therapist, computer progranmer, author, and director of medical-educational films. He was-disabled by amyotrophic lateral sclerosis in 1963. He was married and the father of two grown children. Dependent upon a ventilator full tfme, he lived at home with the assistance of his family and an attendant until he died in 1980. There is hope of survival from ALS and there is a great deal which the disabled individual and his family must do to survive. Another alternative to institutional living, and one whose benefits parallel home care, is congregate housing. The goal is to provide the relative independence of a private apartment rather than the controlled environment of a bed in a t,ospital or nursing home. Congrega .. t: hou:.. ng c."'n bt cesip'1ed to provide both personal and medical support services which will pennit residents wh~ are disabled or elderly to function on an equal basis with I ,. those who ate able-bodied. In France, such group living arrangements are well-established for ventilator-dependent adults. These options enhance in dependence and save money because of a government-authorized category of non professiona.1 care attendant. <27> I Just as great recognition;needs to be-given to transitioning persons from 1nstftut1ons to home care or congregate housing, there needs to be a great I .... .. ..... ... :;----... -. .. -\ I -~ \ ... ,J.o I
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bttet't'WMddmldllU~eeeeeeeetWtbts:kMtttttwreerxrrrt'MMtt't'MreeeetciWtttfeeeeeilHiUltlM8Mftfti31HMNMMVMMMXXMMXXMMXMMtfSMWM%MMMM?M~ttfMMtftJtt:ee_thl2?NS>tWt?i*'~ill ( (( OTA Task 4 Contract 533-4935.0 1011'1'1f O 4 0 8 -42 -awareness of the value of technical aids to the success of establishing and mafntafnfng higher quality life-styles. Transfering some dependence upon caregiver to a independence with a technical aid makes the user responsible for its successful application. Proper utflfzatfon of technical aids enable elderly individuals to function who otherwise cannot carry out certain activities in their environment because of a physical condition and/or lack of energy. Such aids may include battery-powered wheelchairs which can acco11111odate respiratory equipment; environmental systems for controlling electrical appliances (bed, ventilator, telephone); and electric page-turners. For those persons who can and want to work or volunteer, adapted personal computer systems can be employed. In our country today, there are persons of all ages who are ventilator-dependent and who want to go home. However they are forced to live out their lives in hospitals and nursing homes, because it fs the policy of private and public reimbursement payment agencies, including Social Security, not to allow funds for alter~dtfves. Sometimes a family will temporarily assume the cost of home care at great economic hardship. Eventually, they may have to terminate a ~ood thing, with the government again paying the exorbitant cost of institutional vtng." Insurance companies also have a policy of paying for only highly skilled nursing. Yet, not all ventilator-dependent patients at home need this costly care. full-time care by a registered nurse was required only for one-' quarter of the patients and averaged between $15,000 and $16,000 per month. Savings wer~ very substantial when patients were cared for by families or ...... ......... .. I I.~ I __ /"
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:ibliritkvtt2MHMM8Si:iti1Meitxeeettntnli1HtfilrdMtfkMM8kMMHttitNtfMtbiltftfHMtf !Mtftitf ,,,,,,, ft(Mt') t'tdt t tft')tNWtillrNW 11 n r r a-lahtN..,..'i&Wlil*'lW.WlllllW n "' ... MPIJWW~W..i.6WUWlitV." ...... "w.w.w..w-. .............. _.W...J''-''-~ \ ( OTA Task 4 l0/15(1lb O 4 0 9 Contract 533-4935.0 -43 friends, or even part-ti by nursing personnel" (33). It is hoped that insurance companies will soon review their policies and allow, whenever possible, reduced wages for personal care attendants and home-health aides. The money will then last longer, postponing the family's reliance on government agencies. The insurance companies can keep their own money invested for a longer period of time; insurance premiums will be less cost ly. Transition for ventilator-dependent persons into non-institutional living is likely to influence in a positive way the quality of life for their remaining years and delay the time of death. The final decision as to whether or not to do -this should ultimately be that of the person involved. The decision should not be made when the person is. particularly 111 or depressed. The decision should be made based on reliable infonnation to alleviate unwarranted fears. The involved person should be aware that the overwhelming majority of those who have been appropriately ventilated are grateful fur ti,-= technolugical intervention even 1.iuJgh i" is a sma1 placement for the loss of their fonner vitality. It is recognized that "involuntary relocation appears to have a greater negative impact on the elderly tha~ or any other age group." (42). Too often ft is other people who decide: the insurers who develop policies of payment~ government officials who do or do not support the creation of c0111111n1ty serv1ces,health careg1~ers who are influenced by the method of payment or lack of ft and.by thefr'own institutional practices, physicians and other health care personnel who are unaware that there are successful i
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;.~il~~~oiiil~~'U~~~Qiaetft'dklitfMttb .. wtMWtWNNMMMtUtleet!WtWUW!MttvrttttMMXMtRtt'MtftttttN tbftfMtltXt121ttttXMM#ftfXtttttfMtttwww1tN8MtitNMi~~titi: ( ( (: .:. ', \ .' OTA Task 4 Contract 533-4935.0 10/15/85 000410 -44 -alternatives to institutional care, and families and friends who lack confidence in their ability to meet the challenge of home care. Within the past ten years there has been an ever-growing acceptance of hospice philosophy and an increase in the number of programs. The candidate for hospice care is nonnally expected to die.within six months, and the focus shifts from treating the disease to easing a patient's physical and mental distress.< 4o) The hospice alternative is overwhelming appreciated by the patient, family, and other caregivers, easing their physical and economic burdens as well as psychological oppressions of guilt, fear, and anger(4l). Medicare now offers a comprehensive hospice benefit to eligible patients cared for by hospices that meet its standards. There are about 170 hospices that h~ve received Medicare cerification.<42> However. the number of hospice programs, which include both home-care and inpatient services, is over 1,300; and the National Hospice Organization estimates that there could be as many as 6,800 in the next ten years.<40> As good as a hospice program is in meeting the needs of the dying, certain aspects, such as a revulsion against high-tech medicine, raise further questions: will hospice care be denied to the elderly who are already on ventilators or who are good candidates for mechanical ventilation, which will increase their comfort as it prolongs their lives? As lndfhar has already stated, the ventilator-dependent elderly are virtually unweanable. In 1983, Buckingham found that there were no hospices specifically designed to care for the terminally-ill geriatric patient (41). Others ;)./ 0
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... l't ) fft t w .......... M f ( ; tW1111,N-'lil .... Wlll: ......... -h _,,...,_..,_, .,.......,...,_,....,,,,,..,wv-,.Mww1i1w.w"rwwwwwwwww1t,w-...,,-,-.,-,w,wwwwww.wWwww~w.....,111i1w.,a,.., D ltht .a w ..... .,._,,~..,._......,.~.,..,_,..,._,, .... .., -.., ,:, .. .. ''jl"'. -.~ ( OTA Task 4 Contract 533-4935.0 l O/ O,fJff) 411 -45 -report that more who turn to hospice care are suffering from pulmonary diseases ( 40) So the f ssue of whether or not to admit to the hospice the ventilator-dependent elderly will be increasingly evident and be added to a list of other issues crying for public debate. Most hospice programs are home-based and offer evidence of the substancfal savings in cost similar to those home-based programs set up for ventilatordependent persons who are chronically-ill and disabled. A study published last year in the Journal of Risk and Insurance reported that the average cost over six months fora patient in a home-care hospice was $1,319, compared with $8,ssg in a municipa 1 hospita 1 ( 40). The families of those who are tenninally-111, not in a hospice program, and unable to afford continuous care in a hospital or long-term care facility, have to make extreme sacrifices and drastic changes in their own life style. Such indignities must also be assumed by the families of the critically-ill, and the Jha~.eC:. A rerf3'lt TV documer,tary (Fron~line, PBS) '?Se, .. ~d real-life situations in which couples had to spend-down their incomes, sell their homes, and deplete their savings in order to receive public assistance. We are a so~1ety in which the elderly are left to take care of the elderly. Concl usfon There is little direct fnfonnation published or otherwise available on the subject of the elderly ventilator-dependent person. For this discussion, the authors attempted to look at the experiences of persons on ventilators in -, \ ~I
PAGE 215
rwwwt8e:iflifitMHettitWMMMtfMtftfMtfXdtfttrettMettitttlthlMtlflt8MdMtftftttNMt'tNtfMMMMtftftftlMMbfMt!tttft!tttftttftlttMtotttt1Mtft11tl 1 I I ltt I ft 1111 I ft ltt IMM 1 I ttMN 1 I 11t1 ftttx :_ti t t t tt)t'tru,, n, -... .. ; .. ... : .. \, OTA Task 4 Contract 533-4935. 0 1011516~ 0 412 -46 -a wide range of age groups; and the experiences of the elderly who were critically-, chron1ca-11y-, and tennfnally-111 who had respiratory disorders. Using informal fntervfewfng, the author uncovered the issues and obtained ideas for resolving them from those involved, 1.e. elderly on ventilators, families, and caregivers. It was noteworthy that little infonnatfon is available regarding prolonged ventilation and critical illness. Most critically-ill persons either became ten1inally 111 and dfe. A few became chronically 111, and these are the ones who are candidates for prolonged mechanical ventilation. This discussion has identified such issues as (1) the lack of. a positive concern for the right to a life of choice; (2) the lack of understanding about alternative lifestyles, feelings, and values; (3) the practice of decision-makers to be almost totally influenced by the regulations of the organizations for which they work or those of the reimbursement agencies; (4) the failure of nursing homes to provide standards of acceptability; (5) the lack of support'bJ"'refmbursement agencies to failies 'whe,, they play a role fn home care; and, (6) the policy of insurance companies to pay for only high skilled nursing. i J / I The issues that have surfaced come from the experiences of those involved with the care of the elderly ventilator-dependent, i.e. ventilator-dependent persons, family, caregivers. One conclusion that all parties have come to is that there f s a need for a public'forum for the purpose of establishing national policy to resolve these issues. A concentrated effort to identify, mobilize, and coordinate resources can ultfmtely enrich our society and save ; monfes._ ,, .. .. .._ _____ .... --.---.. -----"' / \ ,., .'~ \ .. ~r;.-
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,,. \. (~ .. OTA Task 4 Contract 533-4935.0 10/19/15{) 413 -47 -4) Another Perspective In order to put the above report into perspective, other invited c011111entary was sought. The following opinion was offered by Daniel M. Kenney, Kenney & Associates, Inc.; Fonner Executive, Health Insurance Association of America: "The ventilator dependent patient and the costs associated with their treatment should be of critical concern not to just the public sector, but the private sector as well. The lack of understanding of the problem and the means to assist the patient appear to be the biggest problems. Most insurance executives I know, are totally unaware of this patient population, let alone how to treat them. The fact that many doctors and hospitals have never had any exposure to this type of patient magnifies the problem even more." "Consider the psychological impact on the patient and family members when expressing their concerns about the problem. No one knows how to treat the patient in order to assist them in getting back into the main stream of life, so they stay hospital confined. When the private insurance funds have been exhausted, the public sector is looked to for financial assistance. Many times the public sector financing forces the family to go bankrupt or become fndfgent before assistance is granted. More con-cern "f: exp--~S!Pd with wtio's going to pay the bill versus t. ," -we ass,~t 1ent. begs the question: Is this th~ to deal witn tuc problem? I think most would agree that it is not." The key to making it happen, however, is to get the private and public sectors to make changes in their policies to allow this alternative treatment to be compensated similarly to in patient hospital treatment." The following opinion was offered ~Y Lawrence-C. Morris, Senior VicePresfdent, .. Health Benefits Management, Blue Cross & Blue Shield Association: n general, I think that there are reasons to be optimistic that the problem inherent in the kind of care you are discussing (prolonged mechanical ventilation) are becoming more amenable to solution." .l\3
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( ( OTA Task 4 Contract 533-4935.0 10/15/~~ 0 414 -48 the issue of propriety of treatment is receiving far more attention than ft has historically these questions are now increasingly being brought into the open, and there is reason to think that with widespread use of preadmission review, concurrent review, and other such mechanisms they will continue to be examined." With the increasing focus upon cost effectiveness, I again see reason for optimism. Managed Care0 is growing rapidly, and represents a conscious effort to stretch health care dollars without adverse outcomes. As these mechanisms are complemented with increasing coverage for high technology home health services, individual benefits management (defined as the acceptance of the costs of extra-contractual services when cost-effective), support for a wider range of treatment alternatives seems to be growing." 5) A Final Connentary about the Psychological Effects on Caregivers and Family and the Impact on Dying (Goldberg) Some elderly ventilator-dependent patients are not candidates for home care, and, because of medical or social conditions, require prolonged 1nsti-. tutionalization. The acute care hospital may be appropriate for the initial care and acute stabilization of the ventilator-assisted patient, but a different medical model is required for prolonged care, and acute care professionals do not always understand this model. The patient has needs for early interven~ion\by experts in psychology and rehabpitation"w~ich are impossible and/or difficult to arrange in an institution with an acute care orientation. This lack of attention leads to secondary psycho-social maladaptation, partly due to a dehumanizing environment, and partly due to an inadequate ability to cope with such stress. Without a rehabilitative focus, the elderly person is not prepared for survival for any kind of satisfying life-style. (Alba) Similarly, the family and caregivers need initial and long-tenn psychological and economic support and counselling that may noi be available. This results in abnormal family adjustments and subsequent social and economic disorders ;;;,f
PAGE 218
.:rtt!YSti:titee+tit'Mrtttf#N bl ttt'MtftlMO:etttttitttMWtfMtlMtltftltitltfMt!HtftftfHHMMnftfttMttdMHHtftlHHMMHtfHtdtfHt'.HWtll tt:MHM I I II II lt1 lt1 I I ft I ti I 1 ttrr tttttw a wt r tMt 10 1t1,t,ta\il.;..~ ....... C ,' .... :, OTA Task 4 Contract 533-4935.O 10/15,Qt) 0 415 49 in the family. With prolonged hospitalization of the ventilator-assisted person. the caregivers in the acute care i~stitution become frustrated by unresolved long-term issues that they are not prepared to expect, trained to handle, or willing to deal with. This results in anger, frustration, reduced satisfaction at work, and a lower quality of care. It leads to con flict with the pat"1ent and the family and a discontent that h the breeding ground .for medical liability. Other major concerns are the affect of mechanical ventilation on the cause, timing, and quality of death. If the patient has acute respiratory failure and ventilation is withheld or prematurely withdrawn, the patient will die at some point in time. There is no guarantee how rapidly this will occur nor that this will be a smooth process. As with the decision to use the ventilator. prognostic uncertainty remains the major obstacle. All that is certain is that life 1s a condition with a 1001 mortality" (G. Spencer). The major concern ffJ L :3@ ira "'cute situation is one where an e.. J person may be at hOll'le or in a nursing home and suddenly deteriorate lB. Make). There may be a sudden arrest. no do not resusitate order. and the elderly person is brought to the hospital by emergency medical techni. cians who do. Unde~ these circumstances. the process and timing of death is unnaturally altered. Such a scenario could be avoided if decisions are made prior to the acute event. This should include the elderly person, if mentally competent; if not, the family and physicians should make this prior detenntnatton (B. Make). ""-~---........ -. l : --/" \ l
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fwttHHNt!!'tdt t.hl!_}s"Htit'H>itiht'H)if it >sh' t 'titri,ftftiH ftftNtf ttdHMtrH f dot ecr> (MMM CtdbMMt tOM1MDCM~MNtdndt1htdMM Id fNWNt Nte.aNhllNlC llllftNHRMr, .............................................. ........ -............. ( c OTA Task 4 Contract 533-4935.0 10/1 sfai 0 ,1 i G 50 -Another major concern is the effect that current reimbursement policies (DRG's) will have on the inappropriate continuing or discontinuing of chan1cal ventilation and its effect on dying. Either DRG's will force premature w1thdawal, with resulting death or medical instability, or trans fer to a less-costly site of care, ~here the ventilation may be prolonged -for inappropriatereasons (professional incompetence, economic factors). Although most contributors to the OTA Survey (Task #3) did not expect an increase in the number of elderly patients who require prolonged mechanical ventilation, this anticipated effect of reimbursement policy has already been observed (Giovannoni). In the chronic situation, prolonged mechanical ventilation is not an -emergent, but an elective, decision which usually made by the patient, family, and physician (See OTA Task IS). If this prolongs life. it does so at the desire of those involved to whom this decision will impact and who have decided that it is worth the effort. This desire is crucial for any successful outcome. To most contributors of the OTA Survey, this elective use of prolonged mechan.ical ventilation to enhance the lives of (younger) persons with chronic illness is the most frequent indication and has a favorable prog1:fosis. The incidence of prolonged mechanical ventilation for this patient group is small and is anticipated to remain so. (See OTA Surve11 Task #3)
PAGE 220
t."..-11dllllff#llilll' tflliliNtlllllMMIIIIMtf~MtfililjMtfliilllt'tf111611t1HilMIIMMi116111MWMMtft1111616!1Mai6MHai6MMMMMiMlll6r tftMillift ~ftft..,tMljtOflMllit"i......,llilllt 1111a: Wljf ,....,., 1~1tt~et ,_..., tiw.itWNt ...-o ..,....~..._......, ....... ~...._..,......._._..., __ ..... ~WW11wwwwwwwwwwvw-.w .. 1ia"---....... .. OTA Task 4 Contract 533-4935.0 REFERENCES 10/15L85 000417 -51 -1. Bower AG, Bennett YR, Dfllan JS, et al. Polf0111,Yelftfs report: Investigation on the care and treatment of poliomyel.ftis patient!. Part I: Development of equipment. Part II: Physiologic studies of treatment procedures. Ann West Med Surg 4:559-582, 686-716, 1950. 2. Lassen HCA. A preliminary report on the 1952 epidemic of poliomyelitis in Copenhagen with special reference to the treatment of acute respiratory insufficiency. Lancet 1:37-41, 1953. 3. Hilbennan M. The evalulation of intensive care units. Crit. Care Med. 3: 159-165, 1975. 4. Asmundsson T, Kilburn KH. Survival of acute respiratory failure. Ann. c !ntern. Med. 70:471-485, 1969. 5. Rogers RM, Weiler C, Ruppenthal B. Impact of the respiratoryfntensive care unit on survival of patients with acute respiraory failure. Chest 62: 94-97, 1972. 6. Bigelow DB, PettJ TL, Ashbou~h DC, et al. ~Jte respiratory failure: Experiences of a respiratory care unit. Med. C11n. North Amer. 51:323-340, 1970. 7. Weg John G. / The Respiratory Intensive Care Unit. In Major Issues in Cri tical Care, edited by Joseph E. Parillo & Stephen M. Ayres, Chapter 6, pp. 61-69, 1984. Williams & Wilkins. 8. Thibault GE, Mulley AG, Narnett GO, et al. Medical intensive care: patients, interventions, costs an4 outcomes. N. Engl. J. Med. 302:939, 1980 I ... \ \
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~"-..-a1Nu~wwa~~~o~.abit1Mtf tbtlMMHntMMtftf fttMMtlMtftftfMtdtfthMltftfMtctltftttltft(tt't 7 ( x O 1 t 1 NVtf ft t1 X Mt tr M tr M 1 I ( ( OTA Task 4 1 o'9sOElf4 i 8 Contract 533-4935.0 -52 -9. Cullen D, Ferara L, Briggs B, et al. Survival, hospitalization charges, and follow-up results in critically-ill patients. N. Engl. J. Med. 294:982, 1976. 10. Parno JR, Teres D, Lemeshow S, et al. Hospital charges and long-tem survival of ICU versus non-ICU patients. Crit. Care. Med. 10:569, 1982. 11. Cullen DJ, Civetta JM, Briggs BA, et al. Therapeutic intervention scoring syst: A method for quantitative comparison of patient care. Crit. Care !!!! 2:57, 1974. 12. Caapion EW, Mulley AG, Goldstein RL, et al. Medical intensive care for the elderly: A study of current utilization patterns, costs, and outcomes. JAMA 246:2052, 1981. -13. Thibault GE. The Medical Intensive Care Unit: A five-year perspective. In Major Issues in Critical Care, edited by Joseph Parillo & Stephen_M. Ayres, Chapter 2, pp. 9-15, 1984, Williams I Wilkins. 14. Campion EW, Mulley AG, Goldstein RL, Barnett GO, Thibault GE. Medical in tensive care for the elderly: A study of current use, costs and outcomes. JMA 246:2052-2056, 1981. -) 15. Knaus WA, Draper EA, Wagner DP. Evaluating medical-surgical intensive care units. In Major issues fn Critical Care, edited by Joseph E. Parillo and Stephen M. Ayres, Chapter 4, pp.35:59, 1984, Williams & Wilkins. 16 Knaus WA, Zinnennan JE, Wagner DP, Draper EA, Lawrence DE. APACHE -Acute physiology and chronic health evaluation: a physiologically-based classiffcatfon system. Crft. Care Med 9:591-597, 1981. 17. Wagner DP, Knaus WA, Draper EA. Statistical validation of severity of illness measure. 73:878-884, 1983. .. -.., \ t I I f J .a~~
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' ,,. OTA Task 4 10/15/85 Contract 533-4935.0 59 Q O 419 18. Knaus WA, Draper EA, Wagner DP, et.al. Evaluating outcome from intensive care. Crit. Care Med. 10:491-496, 1982. 19. Knaus WA, Le6a11 JR, Wagner DP, et al. A comparison of intensive care in the USA and France. Lancet 642-646, 1982. Snow RM, Miller WC, Rice DC. Respiratory failure in cancer patients. JAMA 241:2039-2041, 1979. 21. Knaus WA, Draper EA, Wagner DP. Prognosis from combined organ-system failure: A national study. Crit. Care Med. 12:239, 1984. 22. Scheffler RM, Knaus WA, Wagner DP, et al. Severity of illness and the re lationship between intensive care and survival. AJPH 72:449-454, 1982. -23. Scitovsky AA. The high cost of dying: What do the data show? Milbank Memorial Fund Quarterly/Health and Society 62:591-608, 1984. ( 24. Byrick RJ, Mindorff C, McKee L, Mudge B. Cost-effectiveness of intensive care for respiratory failure patients. Crit. Care Med. 8:332-337, 1980. 25. Law Refonn Connission of Canada. Edward Keeserlingk. 26. Make B, Gilmartin M, Brody JS, Snider GL. Rehabilitation of ventilatordependent Jects w1t h,119 oisea~es. {11est 8G:358-365, 1984. 27. Goldberg AI. Fellowship Report #20. Home Care Services for Severely Disabled People. Case-Example: The Ventilator-Dependent Person. World Rehabflitatjon Fund, Inc., New York, 1983 {Available from Dianne Woods, Project Director, 400 E. 34th Street, New York. NY 10016) 28. Hughes RL. Home 1s the Patient: A word of caution. Chest 86:344, 1984. 29. Goldberg AI. The regional approach to hOlllt! care for life-supported persons. Chest 86:345, 1984 .. -.... / I I '.
PAGE 223
~,tFt11NMtt,-.tiMl'5ii6CMiililrt:iWutreenwettuetihMtftttiftWWMWttntn:ett1thtn1t01ttt n rn ttt wuurtts: we: ::: ttr : I lttMMM&CMtt MMM 'rt CMM b fdMW 1 db 1 1 0:21~ f I l<lM>dt .:,.~_..! .. .... .r~~~-, .. :.._:.~--:-t ... ... OTA Task 4 10/15/85 Contract 533-4935.0 0. 0 0 /~ 0 ,; -54 -;.1: 1 ~ V 30. Detsky AS, Stricker SC, Mulley AG, Thibault GE. Prognosis, survival and the expenditure of hospital resources for patients in an intensive care unit. N. Engl. J. Med.:667-672, 1981. 31. Goldberg AI, Faure EAM. Care for life-supported persons in England: The Responaut Program. Chest 86:910-16, 1984. 32. U.S. News and World Report, May 9, 1983, p. AlO 33. Splaingard ML, Frates RC, Harrison GM, Carter RE, Jefferson LS. Home Positive Pressure Ventilation -Twenty Year's Expierience. Chest 84:376382, 1983. 34. Parker, Rosetta E. Housing for the Elderly, p. 9, 1984. (Institute of Real Estate Management Monographs) 35. NRTA News Bulletin 26 #7:1,3,8, July-August, 1985. ( 36. Feldman, J. and Tuteur, P.G Mechanical Ventilation: From Hospital Intensive Care to Home. Heart and Lung 11 #2:162-165, 1982. 37. Feldman and Tuteur. Ibid. pg. 162, 164 38. Parker, RE. Ibid. pg. 47,53. 39. Proceedings from an International Symposium, 11What Ever Happened to the Polio Patient? EAM Faure and A. I. Goldberg, (eds) Northwestern University, Chicago, 198~. (Available from Eli Henfng, Education and Training, Rehabi11-I tation Insti"tute of Chicago, 345 E. Superior Street, Chicago, IL 60611. 40 Maloney, Lawrence D. How Hospices Ease Last Day of the Dying. U.S. News and World Report, Feb 11, 1985. 41. Buckingham, Robert W. The Complete Hospice Guide, p. 116, 1983, Harper & Row. 42. Consumers Research, pg 2,May, 1985. 43. Peggy Beckeman. The greatest gift: know I dfd all I could". U.S. News ; and World Report, pg. 71, Feb 11, 1985 t .. ,.''\. \ \
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Contract 533-4935.0 I ,I ....... .... --... ... ... ... .---.... .__,_ .... --. I .. I (.t' : l TASK 4 APPENDIX \ 000421 -~./
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,~ r~t-Y.'IJ/l,./l lf-..o6:?SSO.?.OO,O C :ITK"AI. <.'9Aat MUJMT,11,E ,IP)ript ic; 1'115 II)'~ Willi:uns& Wilkins Co. oooi122 Vol.13. Ne.I Print,,/ in (.'.S 4. Dutcom.e of respirato.ry intensive care io1the elderly :ICHARD F. Mc-LEAN. MD: JULIE D. Mc-lNTOSH. CCHRA(C): GEORGE Y. KUNG, BScE, CCHRA(C); ,AVID M. W. LEUNG, CCHRA(A): ROBERT J. BYRICK. MD, FRCP(C) .\\'e follo"ed 1018 patients admitted consecuthely to multidisciplinary respiratory ICU (RICU). with spe:al attention to patients aged 7S )T and over. The derly bad a higher RICtJ (11/49) and in-hospital (21/ )) mortalit) than younger patients. The 28 suni,ors a hospitalization had a lo"er acute physiology score \PS) than nonsunivors on admission ( 16.J :t 7.8 vs. 1.8 :t 8.9. respectively), indicating less severe illness. ne quality or long-term sun-hal ( 12 to 24 months) "as ssessecl usina an open-ended questionnaire. Eighteen ospical sur\'i,ors "ere alhe at the time or follo"-up .nd the quality of life "u deemed satisfactOI') b)' 10 or 3 patients "ho "ere IMng independently. Only h\-o of .:8 sunivors had been transferred to nursin1 home care. ;nd 111 ere in acute care hospitals. We conclude most elderl) patients discharged from he RIClJ consider their lif est)le satisfactOI') and are ;101 a larae drain on community health care resources. Funbea: studies of the screening process "hich determines RICU admission are necessary, because unimodal criteria such as age and APS after admission were not or prognostic ,alue. The elderly are increasing in both absolute and pro-ponionaJ numbers. and in the future they will use a greater proponion or health care resources. In respiratory ICUs (RICUs). costs are high, and data on the prognosis of elderly patients with respiratory failure may help in developing strategics for resource utilization in critical care areas. A number of studies'_. have described outcome of intensive care; however, few have specifically concentrated on elderly patients. This study reviews sh()n-term and long-term out comes or RICU patients. panicularly those patients 1S yr and older requiring ventilatory support. SUBJEC'TS AND METHODS The RICU is a 14-bed multidisciplinary unit. super vised and staffed by members of the depanmcnt of anesthesia. The unit's nursing staff provides one nurse per patient. Indication for admission is the requirement for mechanical ventilation and/or invasive hemodynamic monitoring. With all admissions the primary physician (medical or surgical) decides that intensive care is appropriate, and requests an RICU consulL If the RICU stafT agrees that ~here is a potentially revers ible cause of cardiorespiratory failure. the patient is admitted. Neurosurgical patients are cared for in a separate ICU pnd were not pan of this study group. All other patients requiring ventilatory suppon are cared for in the RICO. S111dy Design We studied all patients admitted to the RICU between April 1, 1982, and March 31, 1983. For each patient the following information was documented: primary diagnoses noted by the RICU staff at the time of admission according io the ICD-9 classification.' age. sex. the duration of ventilatory suppon, length of RICU stay, total length of hospitalization. and survival of both RICU and hospitalization. The chans of elderly patients (75 yr or older) were ~viewed, and an acute physiology score (APS)6 wa.~ calculated for those patients remaining in the RICcl longer than 12 h, using data from the first 24 h of their RICU stay. APS is a physiologically based classification system used to assess severity of illness in critically ill patients. I 1"spi1a/ and RICU St. Michael's Hospiial is a 701-bcd. tertiary care racility affiliated with the University of Toronto. It is located in Toronto. a city of 2.500.000 people. All suraic:al and medical subspccialties are represented in this facility. The elderly patients were broadly classified into fiye subgroups, as follows: group I-postoperative cardiac surgery (elective and emergency): group 2-postopera tive noncardiac elective surgery. including general and major vascular surgery: group 3-postopcrative emer gency noncardiac surgery: group 4-postoperative complications admitted Jrorn the wards. emergency dcpanment. or transferred from other facilities: and group 5-nonopcrative admissions (medical and surgical}. Fram the Dep:anmcnt or Anaesthesia. St. Michaers Hospital. Ton,nto. Ontario. Canada. Addma n:quests for n:prinas 10: Dr. R. J. Byrick. Dcp:anmen, or Anaesafaesia. SL Midmcrs Hospilal. JO Bond Sln:et.. Toronto. 'Onlario.. Canada MSB I WI. \ 625 The survivors or hospitalization in the elderly patient group were contacted by telephone by one of the au thors (R.M.) 12 to 24 months after discharge. An openended questionnaire was used to ascertain the following information: present living situation: functioning activity staius at the time of follow-up: number of hospital-
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( ( 626 nmC"AL CARE MEOIONE ;zai.ions since u,5'.nargc: frc4ucn~y of physician .~a..,; attitudes toward5 present quality of life: and willingness. under the sam~ circumstances. to undergo similar ther apy again. Finally. we documented all non-ncurosurgical hos pital deaths during this I-yr period. in order to compare the number or hospital deaths to the number of RICU ~eaths in similar patients aged 75 yr and over. S1ati.t1ical Ana(rsis Data were expressed as mean I SD. Differences between groups. were evaluated using an unpaired ,. test. and the Chi-$Quare test was used to compare proponions between RICtJ sur\'ival and nonsurvival groups. A p-value under .OS was considered significanL RESULTS During this 12-month study period 84% of the 1018 patients were postoperative admissions. The nonoperative RICU admissions (16%) were transfers from the wards. emergency depantnent. or other hospitals. The largest single group (63%) was composed of postoper.;. alive cardiac surgical patients, who had an overall hos. pital monality rate of 5.4%, including emergency and elective C3SC5. The RICU mortality rate was 11.2%. and a further 6. 7% died after RICU discharge. The hospital monality rate was significantly (p < .005) higher in elderly patients than in the rest of the patient population. There was. however, no difference in hospital survival between patients aged 75 yr and older anti the~ aged 65 to 74 yr (Table I). Both the RICU and ho "'al average lenrth of stayc were significantly longer 10r lheSt two g1c,ups than 1or younger (under 65) patients. Figures I and 2 show the RICU average length or stay (ALOS) and duration of v.entilation for the elderly population compared to the rest of the RICU patients. TAIi. I. Comparison of data rrom specirac aie poups TOlal RICU Ap(yr) Admissions Survivors Unknown s 2 0-19 4 4 20-34 50 47 35-44 102 9S 45-54 213 203 55-64 377 342 6S-74 213 170 .t7S. ,:, 54 41 iiii iM ()\-erall mean. J:..ider(I Patient Popt1/a1ion Fony-nine patients 75 yr of age or o,er accounted for S4_ RICU admissions. The majority (83%) of admissions in this group were noncardiac surgical patients: by comparison .. only 30% (331 /964) of younger patients were admitted after noncardiac surgery (p < .005). Table 2 shows the distribution or elderly admissions by source or referral; the.re were no significant difTer ences in survival between these groups. Only one of nine postoperative patients admitted to the RICU from the wards (group 4) survived hospitalization. Postoperative complications prompting R:ICU admission in this group were: renal failure (three cases) .. pulmonary edema (two cases), cardiopulmonary arrest (three cases). and aspiration pneumonia (one case). The cause of death_ in the entire group. of elderly patients was frequently multiorgan failure characterized by cardiorespiratory anest (nine cases), sepsis (three cases), renal failure (four cases) .. and pulmonary edema (three cases). The mean APS in this elderly population was 18.& 8.6 for the first 24 h after admission. Survivors had a significantly lower APS ( 16.1 :t 7 .8) than nonsurvivors (21.8 :t 8. 9). None of the five patients who received hemodialysis in the RICU survived hospitalization. .RICU Utili:a1ion There were IO 18 non-neurosurgical admissions for whom data collection was complete: their Rl'tU ALOS was 4.3 :t: 8.1 days. yielding a Jotal of 4377 RICU bed days. Patients 75 yr and older accounted for 437 ( 10%) RICU bed days but only 54 (approximately S % ) RICU :1dmissions. During the study period there were 188 in-hospital deaths of non-neurosurgical patients aged 75 yr or older who could have been referred for RICU admission. Twenty elderly patients died in hospital, having been admitted to the RICU. Thus. .. in-hospital" monality of Hospilll Awrqe l..cn&th of Slay SurviOl'S RICU Hospital (days) (days) 2 S.6 :t: 9.7 19 ::t 11 3 1.0 ::t 0 'IS.I ::t 14.4 44 6.3 ::t 10.S 27 .6 ::t 35.4 93 3.0 ::t 5.S 17.7 ::t 20.7 195 2.6 ::t 4.9 15.4 ::t 19.2 324 3.S ::t 5.6 19.8 ::t 23.6 146 6.8 ::t 11.7 21.4 ::t 34.8 29 7 ::t 13.1 32.3 ::t 45.6 iji 4.3 ::t 1.1 21.5 ::t 27.,. i f l l 1. I L l f J f I I I f I I I i i I
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; --_t .. ~. ~. _. .,, .. '. : '' ''... .... 1 ~-: ... ( -. ( O O 0'424 Vol. 13. No. 8 AlcL1.'tlll ('I a/-RBl'~RATORY ISTENSIVE (' ARE OUTC-OME FOR ELDERLY 627 patient~ who had been admitted to RICU repreM-meea J0.6S ofthc 188 comparable non-neurosu..-gical deaths in this age group. ELDERLY & GENERALPOPULATION UtCIN CF SIAT IN 101 ..... .... ._., a II ........... .................................................. ,,... .... I I I I I t I I U 1111 FIG. 1. Lenath of RIClJ suy ror lhe elderly compared to that ror the enti~ population. ELDERLY & GENERAL POPULATION CUtAtlDN rF E1111LATIDI 'II I NtlOffS -~: lift' a I I ....,.&.a.wa..i..._..-...., ...... ....... ~.--.. -.,~ .. ... FIG. 2. Duration ot ventilation of the elderly compa,ed to that of the encite population. TAau l. Elderly subpoups Admiaioa C'haracleristics Oroupl No. "'patients 7 .(yr) 76.9 :t 2.8 ICU a~ lcnath otay 3.9 :t 1.6 Duration or vcntilalion (days) 2 :t 1.2 APS 17.3 :t 6.6 ICU IUMYOl'S 7 ICU ladmiuions 0 Holpitll survivors 7 Paint initially admialCd in poup 3. '"-\ '-"''o 7 ""'' Follow-Up Table 3 summarizes the 12to 24-month follow-up results. All survhing patients were inten'icwed. Six of the 14.long-term suni,ors were from groups 3. 4. and S and, therefore. not elective surgical admissions. Their admission diagnoses included per(orated bowel. pulmonary hemorrhage. leaking abdominal aonic aneu rysm (two cases), post-trauma, and cardiac arrest with pacemaker failure. Of the 14 patients living in the community without assistance. ten were living alone or with spouses. One patient had been house-bound for 6 months before follow-up. and three were dependent on children to varying degrees. No patient required.communit) assist ance at home. Six of these 14 patients rated their acti\'ity level as higher or the same as their premorbid state Ten or 13 said they would un.dergo similar treatment apin. and 11 of 13 patients believed their quality of life was acceptable and wonhwhile. Only two of these 14 patients had been readmitted to the hospital since discharge. The two patients in acute care hospitals at the time or follow-up had complicated postdischarge courses and were not expected to survive the present illness. DISCUSSION A preliminary study1 in our unit showed that RICU survivon were functioning independently. in society 8 to IO months after discharge. The present stucly specifically evaklated outcome in a Jarger group or elderly RICU survivon. Our findings agree with other studiesu.1 showing the elderly to have a higher short-term as well as long-term monality rate compared to younger patients. However it is difficult to compare statistics from difTerent studies because or differences in patient populations. For ex ample. in the study by Campion et al. 1 of medical intensive care, the cumulative mortality for patients over 75 yr or age was 44 9' at I yr-primarily related to myocardial infarction: however. 71 or these patients were admitted for monitoring only. and only 31% of these required even one intervention. In contrast. all of Oroup2 Oroupl Oroup4 Oroup5 II II 9 14 78.6 :t 4.4 80.5 :t 4.7 78.7 :t 4.4 78.5 :t 4.5 3.0:t 2.1 14.4 :t 25.9 5.4 :t 4.1 7.7 :t 9.5 2.3 :t Z3 13.1 :t 25.9 4.6 :t 2.5 6.2 :t 8.7 13.6 :t 4.6 17.6 z 8.2 20.9 :t 6 22.9 :t 11.3 II I 4 II 0 0 l 2 .. 7 6 ~r/
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-. ( ( l ...... .. i. ... Tit ':::O' 'ZW'.Mtrz-~--. 628 C'RITIC"Al CARE Mf;DIC'INE T All... ). Li(c-M~ln ,.f IS R IC"l.l 5Ur\ hms 11 to 14 mnnths aftnhospittl disdlar,c Oroup I (n 7) On,up l Cn II) Oroup 3 en 11) Oroup 4 (n 9) Group S f n 14) Livinaat Hom.:ith Comm unit}' Scnic:cs s 3 4 livin1 in Nursing Home 2 In-Patients in an Acut~ Can: Hospital l P:atimt lft'iousl~ admitted in group 3. therefore rounttd twice. our RICU patients required interventions such as ane rial cannulation. ventilatorv suppon. and/or in\asi\e hemodynamic monitoring of cardiorcspiratory ,-aria-bles. Knaus et al.' emphasize that the need and potential benefit of intensive care arc detcr,ninccl by the acti\-C disease process. the severity of illness. the patients prcmorbid health status before PJCU admission. the efficacy of a,-ailablc thmtpy. and the patienfs age. To clarify the limits of our therapeutic capabilities in el derly RICU patients.. investigators need a common currency to describe various disease processes. health status. and severity of illness. The APACHE system" shows that acute physiologic abnormalities (as measured by the APS) have the same effect on monality in i vdticty of teniary care cellters. Our mean APS for elderly hospital survivors was lower than for elderly nonsurvivors (16.1 :t 7.8 vs. 21.8 :t 8.9. respectively). Our overall APS ( 18.8 :t 8.6) and in-hospital mqnality rate for elderly patients suggest a 11= ,e, mortalit: rite adjusted for severity of illness thaa, for comparable groups of younger patients. 1 Thus, elderly patients ap pear to have a greater risk of dying for any severity of disease process (APS), presumably related to a decrease in physiologic reserve with aging. A revised version of the APACHE system iiccommodat~ age as an independent risk factor. In a large survey of ICU utilization .. the overall age distribution was not dissimilar from that an the general hospital population. except for slightly fewer ad mis; sions above age 70 yr. this trend was also noted by Campion et al. 1 and suaests that physicians may be less agressive when treating acute problems in elderly patients. In our study the majority of elderly patients dyina or non-neurosuraical causes were not admitted ror RICU care. This suggests that an active screening process by primary physicians already exists in our hospital. Our study found thai most elderly Rcu survivon wen: indcpcndmt (Table 3) and considered their quality .. or lifr satisfactory .. similar to younger vatients. 7 5 prisingly .. Table 2 sho\\'S that the elderly sunhors were not all in the low-risk elccthe cardiac and nonc3rdiac surgical groups admitted to the RICU (groups I and:?). In fact. 13 of 28 eldcrl)' hospital sunhors were in the high-risk groups: emrrgenq noncardi3c surgic:il admis sions (group 3). postopcrathe complications (group 4 ). and nonoperative admissions (group S ). Guidelines to identify patients who clearly do not benefit from RICU care are needed. Draper ct al. 111 suggest that in multiorgan failure. survhal becomes unprecedented when three or more organ system failures persist for over 48 h. In our elderly group no dialyzed patients with respiratory .failure and renal fail ure suni\ed. Howe,er.~ this type of criterion must be prospectively evaluated in a large group (we had only fi,e patients). and continually re-e,aluated as improved therapeutic interventions become a,ailable. Our experience suggests that an indi\'idualized ap proach to decision-making by experienced clinicians can result in the utilization of an RICU f acilitr for many patients aged 75 yr and over who will return to a wonhwhile lif estylc. Strategics for resource allocation cannot be based solely on such unimodal criteria as age and APS. although these factors -.-an be used by clinicians to evaluate outcome and improve prognostic capabilities. Results of RICU care arc clearly dependent on the screening process determining patient adm.ission. Most studics-u., 1 12 of ICU costs and effectiveness ha,e fo cused on patient status after admission. Future studies must consider faciors that prompt referral to the RJCU. The most costly ICU admissions arc those patients who have unexpected outcomcs.11 In our study. elderly readmissions to the RJCU (group 4) had a \'Cry poor outcome (Table 2). Whether unexpected complications -could have been prevented remains speculati\"e. We conclude that most elderly sunivors of respiratory intensive care consider their lif cstyle wonhwhile and are not a large drain on community health care resources. Rationing strategics for the RICU need to consider the screening process. including the patienf s chronic health status as well as postadmission data. REFERENCES I. Campion EW. Mulley ACi. Goldstein RL d al: Medical intensh,-e care for.the elderly. JA.11.-a 1981: 246:2056 l. Cullen DJ: Results and costs of intensive are. Annth,-siulORJ' 1977: 47:203 J. Cullen DJ. Keene R.. Watanaux C. et al: Results. charges. and benefits of intensive for critic:allv ill patients: Update 1983. Crit Ca" Al/ 1984: ll:10:! 4. Thibauh OE. Mulley AO. Bamett 00. ct al: Medical intensive care: Indications. inlenffltions. and outcomes. N En.el J .II/ 198o-.l02.-938 S. Kupka K: ln&cmational dassiration of' di~ (ninth m-ision). WHO Cl,ronidt-1971: 3~:219 6. Knaus WA. Zimmennan JE. Wapcr DP. d al: APACHE-
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. \ . '. ~ .. I __...., --= :..._ .. I I I Vol. 13. ~o. 8 ,1/,LtYlll <1 a/-RBPIRATORY 11'.'TENSl\'E C-ARE OUTC-OME FOR ELDERLl .-.:;~' 629 acute pll)'SiolasY and chronic tr.11th C\-aluation: A ph)'Siolnskallv bmd clusiration sysaem. C"rit Cllft' .11: ,..$91 7. Byrick RJ. Mindorff C. McKee L et al: Cost-efl'ccti\flell of intaasi\'C en for mpirator) fiailuR paticnlS. Crit Cart AlJ 1980:8:332 a. Knaus WA. Draper EA. Wapcr DP. ct al: Evaluatina outcome hm inleftsi,-e are: A pmiminan. mu~t~tal comparison. Crlt Ct1rt .\lffl 191l: 10:491 9. Knaus WA. Draper EA. Waper DP: E,-aluatina mcdical-surp:al intensive care units. /11: Ma~ Issues in Critical Care. Parrillo JE. # . .. -. --'\ \ ,. A\'lft SM (Eds). Baitimore. Winiams & Wilkins. 1984. pp 3S-~) 10. Draper EA. -Knaus WA. Waper DP. ct al: Pqnosis rrom combined orpn-sysacm failuR. Absar. Crit Cart ,\lt!d 1983: :236 r I. Detsky AS. Saritkff SC. Mulley AO. ct al: Proposis. suni,-al and the c1penditwe of hospital l\eSOUK'ft for patients in an intcnsi\'C care unit. N ~Iii/ J .tlJ 1911: 305:667 12. Siftlel' DE. Carr PL Mulley AO. et al: Radonina intcnsi\'C care physician responses to a resource shonaae-,.. Engl J .\led 1983: 309:1155 .. : .. --"\ :,J r.~ ':. -~ ,~-'ID ..
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,. '., .. ;'.if' .. Contract 533.4935. 0 ,,,,. (_ TASK 4 APPENDIX \ l 000427 .,
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. ( --------------------~--------.: .. IJl't",O.l4'1)/l~/IJl~?5SOl.00,1 C-:ITK"AI. CAIi" Mn~r l",'l')riaf1C11; lfllSh)'ThcWiUiama& WilkiMCo. 000428 Vol.13. No.I Prinlnl ;,, (..". S .. .f. Outcome of respiratory intensive care for the elderly :ICHARD F. McLEAN. MD: JULIE D. MC"INTOSH. CCHRA(C); GEORGE Y. KUNG, BScE, CCHRA(C); ~:\ VID M. W. LEUNG, CCHRA(A); ROBERT J. BYRICK. MD, FRCP(C) _We followed 1018 patients admitted consecuthely to multidisciplinar) respiratory ICU (RICU). "ith spe:al attention to patients aged 75 )T and over. The dert, had a higher RICtJ (11/49) ud in-hospital (ll/ l) mortalit) than ,ounger patients. ne 28 sunivors i hospitalization had a lo"er acute physioloa, score \PS) than nonsunivors on admission (16.1 :!: 7.8 vs. 1.8 :t 8.9. respectively), indicatin1 less severe illness. ne qalit) of long-term sunhal (12 to 24 months) "'as Jsessecl usina an open-ended questionnaire. Eighteen ospital sunivors "ere alhe at the dme of r ollo"-up .nd the qualit)' or life "-as deemed satisfactory b> IO of 3 patients who "ere livina lndependentl). Onl)' t'tl-o of ~8 suni,ors had been transferred to aunin1 home care. ;nd tllo "ere In acute care hospitals. \\'e conclude most elderly patients discharaed from .he RICU tonsider their llfest,le tisfactory and are :aot a tarae drain on community health care resources. Further studies or the screeaina process "hlch deter mines RICU admjssion are necessary. because unimodal criteria such as qe and APS after admission "ere not or prognostk value. The elderly are increasing in both absolute and pro portional numbers. and in the future they will use a piater proportion of health care resources. In respira tory ICUs (RICUs). costs are high, and data on the prognosis of elderly patients with respiratory failure may help in developing strategies r or resource utilization in critical care areas. A number or studies'_. have described outcome or intensive care; however, few have specifically concentrated on elderly patients. This study reviews shon-term and long-term out comes of RICU patients. l)anicularly ihose patients 75 yr and older requiring ventilatory support. SUBJEC'TS AND METHODS The RICU is a 14-bed multidisciplinar)' unit. super vised and staffed by members of the depanmcnt of anesthesia. The unit's nursing stair provides one nurse per patient. Indication for admission is the requirement for mechanical ventilation and/or invasive hemodynamic monitoring. With all admissions the primary physician (medical or surgical) decides that intensive care is appropriate, and requests an RICU consult. If the RICU staff agrees that .there is a potentially revers ible cause of cardiorespiratory failure. the patient is admitted. Neurosurgical patients are cared for in a separate ICU ~nd were not pan of this study group. All other patients requiring ventilatory suppon are cared for in the RICO. S111dy Design We studied all patients admitted to the .RICU between April 1, 1982, and March 31, 1983. For each patient the following information was documented: primary diagnoses noted by the RICU staff at the time of admission according to the ICD-9 classification.' age. sex. the duration of ventilatory suppon, l~ngth of RICU stay. total lenath of hospitalization. and survival of both RICU and hospitalization. The chans of elderly patients (75 yr or older) were reviewed, and an acute physiology score (APS)6 was calculated for those patients remaining in the RICU longer than 12 h. using data from the first 24 h of their RICU stay. APS is a physiologically based classification system' used to assess severity of illness in critically ill patients. I lt1spi1al and RICU SL Michael's Hospital is a 701-bed. teniary care facility affiliated with the University of Toronto. It is located in Toronto. a city of 2,500.000 people. All surgical and medical subspecialties are represented in this facility. The elderly patients were broadly classified into fiye subgroups, as follows: group I-postoperative cardiac surgery (elective and emergency): group 2-postoperative noncardiac elective surgery. including general and major vascular surgery: group 3-postoperative emer gency noncardiac surgery: group 4-postoperative complications admitted from the wards. emergency department. or transferred from other facilities: and group 5-nonoperative admissions (medical and surgical). From 1he Dcpanmcn, of Anaesthesia. SL Michael, Hospilll. Toronto. Ontario. Cauda. Addrm n.-qUCIIS for ~nts to: Dr. R. J. Byrick. Depanmcnt of AnaesdlCSia. St. Mid1acrs Hospital. JO Bond Sln:et. Toronto. Ontario. Canada M$8 I WI. \ I 625 The survivors of hospitalization in the elderly patient group were contacted by telephone by one of the authors (R.M.) 12 to 24 months after discharge. An open ended q~estionnaire was used to ascertain the following information: present living situation: r unctioning activ ity status at the time of r ollow-up: number of hospital.,
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.. ( ( I I I --... ....._ 626 OtITTCAL CARE MEDICINE izations since discharge: frequency of physician visits: attitudes towards present quality oflife: an
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L ( .. ( ti -I I ......... Vol. 13. No. 8 A/cu'tlll l.'I al-RESPIRATORY l?\TENSIVE C"ARE OUTC-OME FOR ELDERLY patient~ who had been admitted to RICU represented 10.6~ of the 188 comparable non-neurosutgic:al deaths in this age group. ELDERLY & GENERAL POPll.ATION U:ICtN If' StAI IN 101 ... ,., ... ~-811' II I I I 11 II, I I Hlllllt ... -FIG. I. lcnalh o( RICU saay for lhe elderly compared to dial for the entire population. ELDERLY & GENERAL POPllATION UAtlGN r, w,munDN ,..,.._._,._, ... ....., ___________ -I ~= Afl-'. I t t I I I,' I 7 I I II II II M It FIG. 2. Duration of ,,_..tilation of the elderly compared to that of the entiae populacioll. TAIL l. Elderly subp'Oups Admillion C'haraclerisaics Groupl No. of petienlS 7 Aae(yr) 76.9 :t 2.8 ICU 1\fl'ale lenath otsaay 3.9 :t 1.6 Dur:11ion ot ventilation (clays) 2 :t 1.2 APS 17.3 :t 6.6 ICU survivon 7 ICU ladmissions 0 Hospital survivors 7 Palicnt iniailll) admitted in aroup 3. \ \ Lm1g-Term F,1l/ow-Up Table 3 summarizes the 12-to 24-month follow-up results. All suni\'ing patients were inteniewcd. Six of the 14. long-term survi,ors were from groups 3. 4. and 5 and. therefore. not elective surgical admissions. Their admission diagnoses included perforated bowel. pul monary hemo1Thagc. leaking abdominal aonic aneurysm (two cases). post-trauma, and cardiac arrest with pacemaker failure. or the 14 patients living in the community ,\ithout assistance. ten were living alone or with spouses. One patient had been house-bound for 6 months before follow-up. and three were dependent on children to varying degrees. No patient required community assist ance at home. Six of these 14 patients rated their activity level as higher or the same as their premorbid state Ten of 13 said they would u~dergo similar treatment again. and 11 of 13 patients believed their quality of life was acceptable and wonhwhile. Onl) two of these 14 patients had been readmitted to the hospital since discfwae. The t'O patients in acute care hospitals at the time of follow-up had complicated postdischarge courses and were not expected to survive the present illness. DISC'U91ON A preliminary study7 in our unit showed that RICU survivors were functioning independently. in society 8 to IO months after discharge. The present stuay specif ically evaluated outcome in a ,aracr group of elderly RJCU survivors. Our findings agree with other studies1.u showing the elderly to have a higher shon-term as well as long-term monality rate compared to younger patients. However it is difficult to compare statistics from difTerent studies because of differences in patient populations. For example. in the study by Campion et al. 1 of medical intensive care, the cumulative monality for patients over 75 yr of age was 44% at I yr-primarily related to myocardial infarction: however. 719' of these patients were admitted for monitoring only. and only 31 % of these required even one intervention. In contrast. all of Oroup2 Cirourl Oroup4 OroupS II II 9 14 78.6 :t 4.4 80.5 :t 4.7 78.7 :t 4.4 78.5 :t 4.5 3.0 :t 1.8 14.4 :t 25.9 5.4 :t 4.1 7.7 :t 9.5 2.l:t2.3 13.8 :t 25.9 4.6 :t 2.5 6.2 :t 8.7 13.6 :t 4.6 17.6 :t 8.2 20.9 :t 6 22.9 :t I 1.l II 8 4 II 0 0 3 2 8 7 1 6 2.~o
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( -. ( l I 628 C"RITIC'"AL C"ARE ~IEDIONE TAIi.i: ). Lift"-st)lcs or 18 RIC1J suni,-nn 12 10 ~4 months :after hospital disdla. Oroup I (11 7) Oroup2 (n 11) Oroup 3 (n 11) Oroup 4 (n 9) Oroup S (n 14) Livina1t Homt"\\'ith Communit) Senia:s 3 4 :? Tf Livin1 in Nursin1 Home ln-P:aticnts in an AC'Utt C~re Hospital 2 Pat~na pmiousl) admitted in aroup J. t~refo~ counttd t\\'ic:e. our RICU patients required interventions such as anerial cannulation. ventilatorv suppon. and/or invasi\e hemod~namic monitoring of cardiorespiratory ,-aria-bles. Knaus et at emphasize that the need and potential benefit of intensive care are det~ined by the acti,e disease process. the severity of illness. the patient's premorbid health status before RJCU admission. the efficacy of a,ailable therapy. and the patients aae. To clarify the limits of our therapeutic capabilities in el derly RICU patients. investigators need a common currency to describe various disease processes. health status. and severity of illness. The APACHE system" shows that acute physiologic abnormalities (as measured by the APS) have the same effect on monality in a variety of teniary care centers. Our mean APS for elderly hospital survivors was lower than r or elderly nonsurvivors ( 16.1 :t: 7 .8 vs. 21.8 :t: 8. 9. respectively). Our overall APS ( 18.8 :t 8.6) and in-hospital mqrtality rate for elderly patient$ sugest a higher monality rate adjusted for severity of illness than for comparable groups of younger patients. 1 Thus, elderly patients ap pear to have a greater risk of dying for any severity of disease process (APS). presumably related to a decrease in physiologic reserve with aging. A revised version of the APACHE system a~ommodat~ age as an independent risk factor. In a large survey' or ICU utilization. the overall age distribution was not dissimilar from that an the aeneral hospital population. except for slightly fewer ad mis-. sions above age 70 yr. This trend was also noted by Campion et al. 1 and sugesis that physicians maY, be less agressive when treating acute problems in elderly patients. In our study the majority or elderly patients dying of non-neurosuraical causes were not admitted for RICU care. This sugestS that an active screening process by primary physicians already exists in our hospital. Our study found that most elderly R.JCU sunivors were indepcndt.nt (Table J)and con.sidered their quality ... \ \ or life satisfactory. similar to younger patients.1 Sur prisingly. Table 2 shows that the elderly SUf\'i\'Ol'S were not all in the low-risk electi\e cardiac and nonc:irdiac surgical groups admitted to the RICU (groups I :ind :?). In fact. 13 of 28 elderl) hospital sunhors were in the high-risk groups: emeraenq noncardiac surgic:il admissions (group 3). postoperathe complic:itions (group 4 ). and nonoperative admissions (group 5 ). Guidelines to identify patients who clearly do not benefit from RICU care are needed. Draper ct al.' sugest that in multiorgan failure. survi\'al becomes unprecedented when three or more organ system fail ures persist for over 48 h. In our elderly group no dialyzed patients with respiratory .failure and renal fail ure suni\'ed. Howe,er.: this type of criterion must be prospectively e\'aluated in a large group (we had only five patients). and continually re-e,aluated as improved therapeutic interventions become a,ailable. Our experience sup,_~ that an individualized approach to decision-n.aking by experienced clinicians can result in the utilization of an RICU facilit~ for many patients aged 7 S yr and over who will return to a wonhwhile lifestyle. Strategies for resource allocation cannot be based solely on such unimodal criteria as age and APS. although these factors can be used by clinicians to e,aluate outcome and impro,e prognostic capabilities. Results of RICU care are clearl) dependent on the screening process determining patient admission. Most studies1)111112 of _ICU costs and effectiveness ha,e fo cused on patient status after admission. Future studies must consider faciors that prompt referral to the RICU. The most costly ICU admissions are those patients who have unexpected outcomes.11 In our study. elderly readmissions to the RICU (group 4) had a very poor outcome (Table 2). Whether unexpected complications ~ould have been prevented remains speculati\'e. We conclude that most elderly sunivors of respiratory intensive care consider their lifestyle wonhwhile and are not a large drain on community health care resources. Rationing strategies for the RICU need to consider the screening process. including the patient's chronic health status as \\'ell as postadmission data. REFERENC'ES I. Campion EW. Mulley AO. Goldstein RL et al: Medical intensive care for.the elderly. JAM.-t 1981: 146:2056 2. Cullen DJ: Results and COl1I or intensive care. An~sth,~iulog_,, 1977: 47:203 3. Cullen DJ. Keene R. Watcmaux C. et al: Results. clwps. and benefits of intenliv:e care for critically ill patients: Update 1983. Crit C,n Alttl 19M: ll:IOl 4. Thibauk OE. Mulley AO. Bamett 00. et al: Medical intensive cue: Indications. intffi'enlions. and outcomes. N .el J .11,d 19S0-.30l:931 S. Kupka K: ln1em1tional classification of dir.easa (ninth revision). WIIO C/1n111itlr 1978: 3:?:l19 6. Knaus WA, Zimmerman JE. Waana DP. ct al: APACHE-
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( ( ... --rm IE 7 a::m:att Vol. 13. ~o. S .\/,lt"t.111 cf a/-RE.WIIATOll" lt-.'TENSl\'E CARE OUTCOME FOR ELDER~r 6:?9 acute ph, ..... and dln,nic hc::alth evaluation: A ph)'Siololically baed dassiflc:alion S)'SICIII. Crit Cun .,t,'rl 1981: 9:591 7. Byra RJ. Mindorfl' C. McKft L ct al: Cost-cffectiYellell ol intffllive me for respir.atm. failure patifflts. Crit Curr .4/nl 1980: 1:332 ll. Knaus WA. Dr:apcr EA. WnJn\.T DP. ct al: Evaluatin1 outcome fiom intensi,-c care: A pmimi111ry multihospital comparison. Crit Ca" .\ltd 198l: 10:491 9. Knaus WA. Draper EA. Wiper DP: E,11luati111 mcdic:11-surp:al intmsive care units. In: Major Issues in Critical Care. Parrillo JE. ... \ \ ... Ayres SM (Eds). Baitimore. Williams & Wilkins. 1984. pp 35-59 10. DnQ,ff EA. -K111us WA. Waper DP. et al: Prognosis rrom combined orpn-system railure. Abar. Cri1 Car~ ,\ll.'d 1983: 11:236 11. Dfflk) AS. Stricktr SC. Mulley AO. et al: Pqnosis. sunh-al and the o.penditure or hospital moun:es ror patients in an in1msi,'C care unit .V Enif J .llc't/ 1911: 305:667 12. Sin,er DE. Carr PL Mulley AO. et al: Rationina intensive carePtn.'Sician responses to a raoun:e shonaae,, ,i/ J .\l1.'tl 1983: 309:1155
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\ .. C ..... --~ .. .. 000433 I 4~f" .., Califontia Health. Decisions Involving Citizenatn.Bealtb Care Cboicea Recent dramatic headlines have focused public attention on ethical issues in health care: Baby rae Receives a Baboon Heart Patient Seeks Legal Help t~ Poree Hospital to 'Pull the Plug rather Goes on National Television Seeking a Liver Transplant for Bis Daughter Thirty-rive Million Americans Lack Bealth Insurance federal Government Issues 'Baby Doe' Regs for the Treatment of seriously Ill Newborns As medical technology advances, the amount of money availa~le for health care is constrained and as values conflict, ~hese and ot~er situations are becoming more common. Critical choices need to be made about how much should be 1pent on health care and where the money 1bould go. Bow ahould we divide up our tax dollars between programs to prevent disease and those that cure or retard it? Bow sho~ld cate be f,nanced for the medically incli.gent? Most citizens have no id.ea of how choice are made about the a1location of health resources yet thbae choices have a prof~~nd effect on th~ Other questions concern choices affecting aedical treatment. What kind of care i1 appropriate for riously ill newborns? ror terminally ill patienta7 Who-decides when tbe aoat aggressive and sophisticated medical treatments available are not in the best ~nterests of the patient? Ethical, financial and legal questions in health care continue to increase at rapid i:ate.-What we need is a bett-er way to answer them -a vay that involves ordinary citizens. California Health Decisions is a creative new effort to do just that. Di.iring a .. aeries of small v~oup and town ball aeetings, the citizens of orange County will havean opportunity to identify the social values and priorities they think ought to be used as a basi for health policies and profesaional practices. \ \
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.. ( ( PROJECT TIME "TABLE California Health Decisions will hold a training conference for approximately 75 community leaders in October 1985. Following this, small groups and town ball meetings will be used to impart information and solicit public opinion. These meetings will take place in various community locations over a period of aeveral months. The second phase will include broad public dissemination of the issues and recommendations identified during these meetings. In the fall of 1986, Citizens Bealth Care Parliament, consisting of elected community reptesentatives, will meet for two days to formulate.specific tecommendations. The results of the Citizens Health Care Parliament will be published and made available to a wide audience, including health care policy makers and providers atthe local state and fede~al levels. California Health Decisions includes a plan for follow-up and assistance to policy makers and others who are in a position to implement the citizen recommendations genera~ed by the project. PROJECT ORGANIZATION .California Health Decisions is modeled after a pio~eer project called Oregon Health Decisions, held throughout the state of Oregon in 1983 and 1984. ~ur project will take place in Orange County, but it is anticipated tbat other areas in .California will launch similar projects. The Orange County Health Planning Council and the Center for Bioethics at St. Joseph Bealth System, Orange, have collaborated.to develop the ~roject. It will be cond~cted under.the aegis of th~ southern California Health Resources Center, the nonprofit, 50l(c)(3) action arm of the Orange County Bea~th Planning Council. The orange County Bealth Planning Council i the federally-designated Health Systems Agency for orange county. Its 1oals are to increase ~ublic accountabiiity of the health care system and to implement policies which will limit costs while assuring quality aervicea and availability. In orderto emphasize implefnentation as well planning, it established the Southern C~lifornia Health Resources Center, a nonprofit corporation, as its action arm. ... !he Center for Bioethics at St. Joseph Health sistem, orange, offers educational programs and consultation services in bioethics to h~spitals~ n~rsing homes, profesional organization& and associations, as well as professional and.lay persons. 2 \ i
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.. ( ( ASSUMPTIONS 1. The proper development of public policy on health decisions must include consideration of societal values and a way to identify and incorporate those value~. 2. If we are to find long-term solutio~s to high cost medical care and.inequalities in access to care, the problms should be faced and understood by the local conununities. l. An informed public, concerned health profession~ls ~nd a vise, restrained government ate all necessary to open, prudent discourse on health decisions. 4. Increased public awareness of the critical health decisions families must make in the coming decades calls for a special educational effort ~ndorsed and fostered by state and community leaders. 5. The.wishes and preferences of individuals, patients and families should be the central consideration in health decisions. 6. Decisions involving medical treatment and other health care choices should be made in an atmosphere of interactions between individuals/patients, families, and health care professionals. Enactment of legislation and/ot government interYention in these matters should occur only as a last resort. SOURCES OP SOPPOKT Funds to support the project are being sought from foundations, businesses, health-related orgnizations and the general public. Contributions are tax-deductible. All contributors wi~l be listed in the final conference proceedings and will receive spe~ial updates throughout the course of the project. Checks 1bould be aade payable to California Health Decisions and sent to:. I I I California Health Decisions c/o Southern California Health Resources Center 202 Fashion Lane, Suite 219 Tustin, California 92680. I Inquiries should be addressed to Ellen B. Severoni, Pro-;ect Director, at the sameaddress. Telephone number ia (714) 832-1841. 3 \ \
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---:.-:i. ,., .. -., --.............. # ,,.,..,.. ; '. ." t :. ; I' ;. A f ri ildl !IJ II a:: t:1 : It -... ., .~=,,r.1,1r1~1ld1 1;1("''H1l1i ,rr I a .. ~: I I It -JI t?:~-~':: ,-~llililf :.Ii lit'! ~!Ult JIU! .H~-ela-1_ =r. -I r.. i ,1 li e trj ... .. J.. --1 '... i ,:t:.-~. .......... 91!11 .,t;. ,c r-r ... ~-r ti \<<~!<\~1;,;.-~ .,. .. -~--_: !~ 1 I . I .. n ; "' f l . :t.. ..... ,.. j -~-ii o-~->: ~ = _... ,c r II a 8,1 ff~I.I r;a .. = -~,::;;.:,....-==,.... _:_:-.. a s c '= .._ ll I s- .. '.7~t::,~--Ai. f II I -ll-a 1 I ;r,I.. d ,1 0 :r :ii-:---. .. .:-:r t~ -.-,,!:,. ,. 11111 JJ s-... I... iii"' ti :,,~",\ ., "~ ;,}: ;. . =-.. =1 :-. .. ... -,-:'. 4'.~t: r.r>:-;;,,./-~c:W;t-linr d Jh ... !i fit"!' J a111I rrl,u I / ., ... ,.~--_?\ =::~/!r~:-, ;.__ ~:7,::'/ft:;!~ ----~-iil~r[i llilHii' f!iile1 1p .. "' n If (~1:i id; 1 ~ Jf !!rgn ;if 1f t rat t .. ti --~ h. ,ssn11 d 1a-l h:1 1:1.tl1 .Iii : 5 0 e Q C,,.j ,, 1
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,: ....... ,.., .., ..,.... ; .., .... lnl,,.....,ftlld. 1alli9 ...... ........ QIN ..... -~....-....lltltlctalhartllllld ..diclal lddn,ys and rarch II PNONdlnl artUictal Uen, i ............... and tbe lilt .... \ We oaacelw buman Hie lllltllde U. womb. and we can il'lnlplmt emir.Jo from aae .womb into anadtterJ R'Cb ii : ,roCll'!Jnc donlnl. an mend ... m, tbt 1ft IPID, an lenellc lllli ...., a IN lf'I bodies far IOlne futllntnlUITadiaD .. ..,.., ............ wtt.11. no dlclared. -Xever mucla bowledp been mu .. pied with IIUle pklance for Ila ...... .. And ..... lbe asked the .. audience. -wm tbat.pidance come from! -We're bapla, will come from people like JOU-people wbo are inlenlted _,...,, to come out tonilbt.. people wbo are proud of what oar belltll-are l)'a1em bu done bat who are aware tbat t.bere are ligrdlcmt .... t11at need lmprovemenL" Amaal the 228 0nnae County .. cltlllnl wbo turned au& far tbe project' introductory meeUna were dactan, Dmlll and other bealtb-cara s-'esetonela. npreaentatlvel of city pernment,I and ( leat: 10 ardtnary cltlr.cnl-peollke Glarla Dnenpon of Oran,e. '1 think 1t'1 about time far tbe public to be IDYOIYed," llld Daven part. COUDlllar and lnlCruct.cl' at Rancho Santlqo eau.,. In San&a : Ana. wbo deacrlbed the project u an appartmdty far the public to be : awakened to tbe need oo1c at : wbet.btrr we can live or cle with .......... ........ ..,. '1 have a deep concern tbat. ......... be done to make the t public free to make declllom With: out ptUnl lep1 npercuaiom... : .. 111d. 'Tm m:lted tanipt In wlnl the IDtenlt ID pdentoneJ1. : .. the lay public." .' Project dndar ..... a ,.,. ; tl&ered ........... equally m:fted : at the ormclUllaa of the iDeetinl. : wldcb ,...._ tn man thin 80 YOlunteen ...,.. up to Nne u : INUP ladrn. wbo will be trained : to 'IClll&ale tllepubllc meetiDp. : '1'm NIiiy pleuecl puncb. .. Sevenal 111d. -rbe mamentum II : .... Ille ...... timely and tbe : commnalty II eoncerned-lDCI : &bat'1wbat.ltbinkl .. tGn1pt. ( .. UaW DOW, Severaai llid. -rbe Jllc bam't been involYed In : Wltb-care.....,. becaUle people : ... bad. larmal mechntsm to : -lnlluence how bealtb care ii deliY -..I .. ..... ,. Aldloap OrlDI' County II c:ur r.mUy tbe only .,_ tnYOIYed In .. Callfarata Beallh Deciliaal. Sner Gal 111d tiM "t'*ved commt& menll tram llealth plannln, .... 1. cia throusbout tbe 1tate to replicate tbe Oranp County Proj I ecL .... JJ a result of tbe Oregan Health Deciliona project. Severoni. aid. ftve other states allO are now conducting proJedl of their own. and the Prudential lmurance Foundation hu bqun offerin1 pat.a fat "local dedliaa-maldn, tn bioethlcl.. Callfarata Bealtb Decllionl. a nonprofit arpmr.atian with a n -. member actYilory baud. recently received a 115.000 ftnt..y_. sn,nt fram PrudenUaL Severont ltrelled. however, that the put II aaly Ned money for conducUng tbe project and tbal other put applications are bein, made. Sbe added that more than 14.000 in donatkml allo bu been railed from local bolpitall. Referring to the Ore,an Health .. Decislonl project. Severoni 111d t.bat one C011ND1U1 from t.bat proj ect wu Uaat neryaae II enUtled to an adequat.e level of bellth care. The 0repn project'a NCOIIIIINID clatlonl were turned OYer to t.be ltat.e Leplature, but ... llid the Leplature hu llked tbat the project be reinltateda. that tbe arpnilen 80 back to the cltllenl to define ~Y wbat they mean by .. adequate level of care" and how that care ii pma to be paid far. Altboup Severaai na&ld that Jeplatlon may come a result of the California Bealtb Dedlionl' recommedatlolll, abe IGld tbe audience Uaat. "we a cammualty c:an beaiD IO make W declllklal for ounelYel dial will not require leplaUaD. Our bGlpilall are In need ol me l'JtdeUnea on bow we apecl thele (etbical) drfelODI to bemade. Bayley, who .... been warklnc full lime In the field of b6oetblca llnce 1978. pve the audience ID overview of the typea o1 medical and etbical. --Oranp County ftllidenll wW be dfr,...... O\W tbe Dal year. She apoke of rillnl health-cue C0111. _.. tbat nearly MOO 1111-llon a ya, ii DOW apent OIi healtb cue In &bll caun~ and tbat mdl wluall. wbo apelit about 1211 an health are In 1985, apent about 12.l.perpenan In IIN. And lhe apoke -tbe ... of whether Americana haft .... to adeqt111e health care. -. -rbe ....,.. 11 dellnltely -. p aid Bayley, apladnlng tbat. .,. ;-pralimately 30 to 35 million Amert .. am-about aae tn eight people --llawao~~ \ I -ADD WJIID JOU.Daft M MIRA ........... ..., dlflca1t -are t.blll dayl. ..,.,.117 If It II nat a paYe _,...,_ Bealtla care II becM,buP mare a cnn,modf ... ty whether ,-Uke 1tar DOL She added t.bat cuta In prenatal care have led. mmewould Y and I would. agree. to ID IDCNIUI In infant martallty. It II Ironic, I tblnk. that we are cutting back In prenatal care, and yet when a baby II 'born prematurely, buically be cause of eulbacu In prenatal care. we spend enarmoua amountl of money In neonatal lntemlve care units caring far that cbi1cl.. Bayley 111d tbe U.S. Infant mor talit,y rate II wane than In 18 other indUltriallled countrlea .. and far blacu in our cauntry It II twice u bad u It ii forwblta" At the 11111e Ume tlUI fl happen. Ina, me 111d. ..,,. are IPlndinl about DX> million annually tor transplantla beart. Uver, kidneys, pancreas and 10 on. and If tbe supply of orpm lncreales, it II esUmated that we will be apendinl about 13 bDllaa a year. rm not Jlnl tbat'1 bad, rm aytng we need to know what tbe trade-off are." Altboup .. enormous amounts of money" are apent to ave one penon. Bayley aald. -ibere are hundreds of children who are dytna for lack of adequate food and health care n. tbll country, but they are unldentlfted." 1 She recalled Jamie Flake, the i YOIIDI daupter of I Baaton bolpl-1 ta1 admlntlnt.ar who needed a liver ........,1an, few yean qo. Tbe stri' father, Bayley aid, wu a very articulate. any man who knew pubUc relaUona" and who aucceeded In ptUna bll daughter lift!' tnnlplant after taldq bll appeal to the media. But at abam die 11111e time. Bayley llid, tbeN wu a 8-year-old boy In Chicap WbaN motber WU on welfare. Sbe did not hae money, WU not articulate, did not have --. to the media and. Bayley 181d, the boy did not pt a .llertnmplant. '1t 11e1111 to me, tbat II not a fair way-or a ,ood way-to be mlk1n1 decllionl about wbo lbould have aceea to an. Bayley 111d. "We lq,e California Health Declllom Omnty Project~ gm 111 a cbance to be mare IDYOlved In tbe kindl of policlel and under1ytaa : princip1ea we want to IOftffl our healtli-care cbalcel We need to deal with It u a lOclety. "The dec:tllalll we face are clear-ly difficult, cleciliona about who will UYe and who will die, dec:llionl .about wbo wD1 decide who will lle and wbo will die, dec:lllonl about whether health care II a commodity or a right, decialona about trade.offl between billlc care and htlhtecb ..... dlCillaal about laow bealtb Clle lbauld be raUaned ,, ,'.. tt 'hf,
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.. CALIFORNIA HEALTH DECISIONS 000438 ,1 QUESTIONS AND ANSWERS ( ( 1. Wbat is California Bealtb Decisions? California Health Decisions is a project to educate the public about ethical issues in health care and to solicit their opinions and recommendations, so that our health care policies and practices will reflect community values. As medical technology advances, and as costs rise while resources become more scarce, there is an increased need for an organized method of identifying societal values. 2. Where will this take place? 3. Initially the project is being organized and conducted in Orange county; nowever, it is anticipated that other parts of California will initiate similar projects. The California Association of Health systems Agencies bas already solicited our help in organizing projects throughout the state. &ow will tbe project work? The project is structured around a aeries of small group ~iacusaions, Town Ball meetings, and a Citizen's Health care Parliament. The small group meetings will take place in homes, offices, churcbes--anyplace where people gatber--tbroughout the county. They will be facilitated by a group of trained volunteers nd will be held during the months of October, 1985 tbro,ugb February, 1986. A discussion guide will be used to record people's opinions and recommendations. Prom February through May 1986, 12 Town Ball meetings will be held in various geographical areas throughout the county. The purpose of these sessions is to report on the concerns and recommendations identified in the small group meetings, to provide further education on key issues and to solicit additional recommendations. Between June and September 1986, reports of the small group and Town Hall meetings will be compiled and shared with the community at large to receive further opinions prior to the He~ltb care Parliament. In October, 1986, a Citizens Health care Parliament, consisting of community representatives, will meet for two days to formulate specific recommendations. These \ i
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. < / '. \ ( .' ( 000439 CALIFORNIA HBALTH DECISIONS QUESTIONS AND ANSWERS Page 3 6. Who i funding the project? A seed grant of $15,000 was received from The Prudential Foundation. Donatione are being sought from local businesses, foundations, and individuals. 7. Bow will the public know about the project? 8. California Health Decisions will publish a bimonthly newsletter available to individuals for a donation of $5.00 or more. It is hoped that word of the project will spread through those who attend small group meetings. In addition, the media has been enthusiastic about the effort and has published several articles describing California Health Decisions. Ia anyone elae doing aometbing like tbia? California Health Decisions is modeled after a pioneer project ca~led Oregon Health Decisions held throughout the state of Oregon in 1983 and 1984. Since that time, several states have been interested in similar efforts and applied to The Prudential Poundation for 9rant money. Pive states were awarded a grant of flS,000 a year for two years. Orange County is the only county awarded this grant. Tne other states are: Maine, Hawaii, Iowa/Illinois, Idaho, and Washington. The time ia right for a project such as this and the aore activities there are throughout the country the more significant the impact will be, both in terms of recommendations and increased public awareness. 9. Bow can people get involved in tbe project? Those interested in setting up and/or in attending a small group meeting are urged to call the California Health Decisions office at 714/832-1841. The offices are located at the Orange County Health Planning council, 202 Fashion Lane, Suite 219, Tustin, California, 92680. Other ways to get involved include subscribing to the newsletter, attending a Town Ball meeting and making a donation in any amount. \ I I
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., ( I C. CALIFORNIA HEALTH DECISIONS QUESTIONS AND ANSWERS 0 0 11 ._! ,If l\ t? ,.z; 'i ;} Page 2 recommendations will be published and made av~ilab~e to a wide.audience, including health care policy makers and providers at the local, state and federal levels. Following that Parliament, California Health Decisions will continue to exist--as funding allows--to follow up on recommendations and to assist in their implementation. 4. What issues is California Bealt_h Decisions concerned with? 5. Broadly speaking, with ethical issues and health care. Ethics has to do with rights and obligations, with values and principles, with moral choices. aioetbics is defined as the study of the moral and social iaplications of practices and developments in aedicine and the life sciences. Not only individual treatment decisions, but broader issues such aa the allocation of health care resources have ethical implications. Por example, should everyone have access to expensive high-technology medicine, such as artificial hearts? If not, who abould get them? Who should decide? Bow should we divide up our health care dollar between programs to prevent disease and programs to treat it? Bow should care be financed for tbe medically indigent? Other questions concern choices affecting medical treatment. What kind of care is appropriate for seriously ill newborns? Por terminally ill patients? Wbo decides when tbe moat aggressive and sophisticated medical treatments available are not in the best interest of the patient? In -ummary, California Health Decisions will be concerned with ethical issues affecting quality of care, access to care, and the allocation and rationing of health care resources. Wbo is ~rganizing this project? California Health Decisions was initiated by the Center for Bioethics at St. Joseph Health System, Orange, and the orange County Health Planning Council. Its activities are directed by an Advisory Board, and the organization bas applied for a separate nonprofit status. \ l
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( ; \ Care for Life Contract 533-4935.0 0 0 0441 ....--, ..... LIFE SUSTAINING TECHNOLOGIES AND THE ELDERLY PROLONGED MECHANICAL VENTILATION TASK 5. FACTORS INFLUENCING TREATMENT DECISIONS October 15, 1985 Prepared By: Augusta Alba Robert Byri ck Donna Frownfelter Allen I. Goldberg Rita M. Gfovannoni Frank J. Indihar Barry Make Walter O'Donohue Margaret Pfronmer Alan L. Plummer Wil 11111 Prent 1 ce Geoffrey T. Spencer ~J
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( ( Contract 533-4935.0 TABLE OF CONTENTS OFFICE OF TECHNOLOGY ASSESSMENT LIFE SUSTAINING TECHNOLOGIES AND THE ELDERLY PROLONGED MECHANICAL VENTILATION Task 5. Factors Influencing Treatment Decision IntroductioA 3 1) In practice, who makes the decision? 6 2) In practice, what patient characteristics weigh most heavily in decisions regarding the initiation of treatment, weaning, and withdrawal 9 3) In practice, what factors influence decisions regarding transfer of patients from one setting to another? 12 4) In practice, what role does age play in these deicisions? Is this appropriate? 14 5) What characteristics of elderly patients may receive inappropriate attention? 16 6) How are changes in the patient's condition evaluated, and how do these enter into treatment? 18 7) Are decision-makers sufficiently knowledgeabl~ about the elderly and about ventilation? Are they sufficiently open to the various treatment options? 19 8) What is the impact of institutional norms and guidelines re: mechanical ventilation, including "do not intubate" orders and their interpretation? 21
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( <. Contract 533-4935.0 9) How and to what extent do religious beliefs and cultural values influence treatment decisions? 23 10) Is the elderly patient an active participant in decisions about initiating and continuing care and about.weaning? Is she/he able.to give infonned consent? What are the methods of detennining the patient's preference? What is the role of living wills and other advance directive$? 26 11) How and to what extent does practice vary in different parts of the U.S.? 29 12) What is the impact on treatment decision of existing legislation or particular legal precedents? 30 13) How does practice in the U.S. compare with practice in selected other countries? Why and with what results? 34 Appendix A. Appendix B. Appendix C. APPENDICES The Patient's Perspective legal Precedents re: life Support Do Not Resuscitate Orders -The College of Physicians and Surgeons of Ontario
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OTA Task 5 Contract 533-4935.0 LIFE SUSTAINING TECHNOLOGIES AND THE ELDERLY PROLONGED MECHANICAL VENTILATION TASK 5. FACTORS INFLUENCING TREATMENT DECICIONS 10/15/85 -1 -The questions raised by OTA concerning the factors influencing treatment decisions have been answered by a diverse group of experts with a variety of professional backgrounds who practice in multiple regions of the USA or in other nations and in different kinds of care-settings. In addition, their professional perspectives have been supplemented by an organization leader who also has been totally ventilator-assisted for the majority of her productive adult life. ( The contributors were: ( Augusta Alba, MD Physiatrist/Neurologist. Authority on long-tenn respiratory care in the pioneering Howard A. Rusk Respiratory Center, Goldwater Memorial Hospital, New York. New York. Robert John Byrick, MD Critical Care Physician/Anesthesiologist. Authority on medical outcomes in an acute ICU, St. Michael's Hospi tal, Toronto, Ontario, Canada. Donna Frownfelter, RRT, PT Editor, Chest Ph~sical Therapl and Pulmonary Rehabilitation. Board Member. hicago Lung ssocia tion; Co-chairperson, Chicago Lung Association VentilatorDependent Adult Project. Director, Chest Physical Therapy, Rush-St. Luke's-Presbyterian Medical Center, Chicago, IL. Assisting Ms. Frownfelter were: Ellen Elpern, MSN, RN Critical Care Nurse, Rush-St. Luke's Presbyterian Medical Center, Chicago, IL. Shari Pomerance, BA, RRT Respiratory Therapist with special interest in ventilator-assisted individuals, Rush-St. Luke's-Presbyterian Medical Center, Chicago, IL. John Kirkwood, MBA -Executive Director, Chicago Lung Association. Ann Koterla, MBA Consultant, Chicago Lung Association.
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'... ( ( OTA Task 5 Contract 533-4935.0 Rita M. Giovannoni, RRT Respiratory Therapist with special interest in ventilator-assisted individuals. Pulmonary Rehabilitation Service, University of Wisconsin, Madison, WI. Member, American College of Chest Physicians Ad Hoc C011111ittee to Develop Guidelines for Ventilator Care in the Home and at Alternate Connunfty Sftes (ACCP Ad Hoc Conni ttee). Assisting Ms. Giovannoni was: James Skatrud, MD Chief, Pulmonary Medicine, University of Wisconsin, WI. Frank Indihar, MD-Practicing Internist/Pulmonologist. Innovator of long-tenn respiratory care-center at a large metropolitan medical center -Bethesda Lutheran Hospital, St. Paul, MN. Barry Make, MD -Pulmonologist. Director of Respiratory Care Center, University Hospital,Boston, MA. Fonner Medical Director, Medical ICU, Boston City Hospital. An authority on home ventilator care for adults. Member, ACCP Ad Hoc Connittee. Walter O'Donohue, MD -Pulmonologist. Chairman, Department of Internal Medicine, Creighton University School of Medicine, Omaha, NE. Chairman, ACCP Ad Hoc Conmittee. Margaret Pfro11111er -Research Associate/Consumer Advocate, Rehabilitation Engineering Program, Northwestern University School of Medicine, Chi cage, IL. Alan L. Plunner, MD -Pulmonologist. The Emory Clinic, Atlanta, GA. Member, ACCP Ad Hoc C011111ittee. President-Elect, National Association of Medical Directors of Respiratory Care. William Prentice, RN, BSN -A nurse with special interest in respiratory rehabilitation. Liaison Nurse, Pulmonary Service, Rancho Los Amigos Medical Center, Downey, CA. Member, ACCP Ad Hoc Committee. Geoffrey T. Spencer, OBE, MB, BS, FFARCS. Medical Consultant, Phipps Respiratory Unit, St. Thomas Hospital, London, England. Medical Consultant, Responaut Program.
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: \ OTA Task 5 Contract 533-4935.0 INTRODUCTION Case Scenario LIFE SUSTAINING TECHNOLOGIES AND THE ELDERY PROLONGED MECHANICAL VENTILATION TASK 5. FACTORS INFLUENCING TREATMENT DECICIONS C.M., 1n her late sfxties,retired after a long and successful career as a teacher. Shortly thereafter, she suffered 10/15/85 -300044G a severe respiratory infection, which caused her to be hospi talized and ventilated full-time through a tracheostomy. Although she had a ~hronic disability prior to.~his acute illness, she was fully ambulatory, independent, and active. C.M.'s insurance policy paid a fixed rate per day, and her private financial resources were soon almost exhausted. After a period of time, it was no longer to the advantage of the acute medical facility to keep her. Her doctor and rehabilitation therapist wanted, despite her age, to find more for her than the long-tenn nursing facility which accepted (but did not have a good reputation in caring for) ventilator-dependent people. It was hoped that weaning her from the ventilator would be to her advantage; she would be able to go to a more preferable care setting. C.M., however, was frightened at the prospect of being weaned. There was no respiratory care program being planned for her which would include mechanical assistance: e.g. oral positive pressure. There was some consideration being given to her living in her own apartment with attendants or nursing aides, combined with technical equipment, such as an enviromental control system and wheelchair. Neither the decision to intervene with a tracheostomy and ventilator as part of her original treatment, nor the decision to wean her from the ventilator, nor the decision as to what kind of life-style she would have after leaving the acute-care facility, was made by C.M. herself. She did not seem capable of making a knowledgeable decision, and she was frightened at the prospect of being without the technology that was sustaining her. In addition, the caregivers (doctors, nurses, therapists, social workers)
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OTA Task 5 Contract 533-4935.0 were not knowledgeable themselves about the practical aspects concerning lifestyles which were feasible for her situation in her her connunity. The care-givers openly ntvealed their lack of consensus by conver sation and arguments in her presence. This did not contribute to her confidence that she could survive for long outside her present innediate setting. The care givers did not recognize that her consequent indecisiveness was a logical result of their own. They misread her fears and evaluated her as incapable of making appropriate decisions in behalf of her own interests. A peer-counselor would have provided many answers for both C.M. and the caregivers, presenting them with options and alternatives based on real-life experience. However, no such option wasconsidered. Community based alternatives do exist for persons like C.M. But they only exist because of the recognition on the part of a few individuals of the issues and their relentless pursuit of legislative change. Such options include independent living services-attendant care, technical equipment, and congregate, accessible housing. The fact that Medicare or private insurance companies do not have services conveniently packaged and readily available, and that they probably do not readily pay for -these alternatives, also affected the decision-making options for this elderly person. Case Scenario A.V., a masters-level nurse in her mid '70's, has had a professional career in health care involving decades of teaching science at high school, nursing school, and at the college l~vel. Soon after attending a patient with dreaded spinal meningitis, she had a sudden cardiovascular .collapse and cardiopulmonary arrest. She was resusi tated by her sister, intubated in the local emergency room, and odmitted to a regional ICU for acute respira tory failure which required tracheostomy and prolonged mechanical ventilation (over 3 months). In addition to her pulmonary problem, severe hypoxia (oxygen lack) had resulted in abnonnal h~art, kidney, and spinal cord function. She made no urine for over 2 months, requiring meticulous attention to her input, output, and weight, as she received daily peritoneal dialysis. She could not move anything but her eyelids, and a world-famous neur ologist claimed she never would move aga_in. After 2 1/2 months of intensive care, a decision had to be made. The coordinating physician (a resident) invited 6 atterading specialist consultants who discussed her prognosis and gave their opinion (50-50). The resident, lO/lSfO O 4 4 7 4 -
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( ( OTA Task 5 Contract 533-4935.0 knowing that further treatment was futile with no urine output, discussed a renal biopsy with the patient who was alert, awake, and infonned of the high risk (at this time, A.V. had an increased bleeding tendency). After a discussion (eyelids do pennit conmunication), the decision to do the biopsy led to favorable diagnosis with a prognosis favoring recovery. Soon, movement of the extremities began, and with rehabilitation, A.V. is walking and working today. She continues her volun t~er work which, in the recent past, focused on socially disturbed children. She currently is working with the elderly. A.V. has given her pennission to the OTA to share her feelings about the above experience {Appendix). 10/15/85 -5 00C448 Throughout the history of medicine, a basic tenet has been to provide the best possible fo.r the patient The definition of "best care" was reached by the physician and patient, acting together, searching for the answer to the patient's problems. Decisions were based on moral and ethical principles dear to the physician and patient alike. In more modern times, decision-making has been clouded by an economic issue. This has been due in part to the recent onset of a budgetary governmental philosophy that arbitrarily allocates a 10% limit of the gross national product to health and welfare issues. Despite the lip service paid to "quality of care being left to the physicians and hospitals" (Senator David Durenberger, R-Minn; Chairman, Senate Health Co,nnittee; Author, ~RG Medicare Reimbursement System), it is apparent that economics is and will play an unfortunate role in determining the decisions about future care provided to our elderly citizens.
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I \ OTA Task 5 Contract 533-4935.0 Who, then is the real decision-maker regarding the patient's care: 1011s1l1Jio O 4 4 9 -6 -the patient; the physician; the health care system, or the government, which limits payment for services? It is becoming more and more apparent that if cost is the prime mover in making medical decisions, it is the body that regulates financial resources that must bear the prime responsibility for medical decision-making. It is this concept which many people find unconscionable and unethical. It is apparent that if proposed legislation rations health care dollars and services, elderly patients with chronic and expensive illnesses will be closely scrutinized for the cost-effectiveness, rather than the cost-benefits, of their care. 1) In practice, who makes the decision? The decision to institute prolonged mechanical ventilation is often made on an emergent basis; patients are usually intubated and begun on mechanical ventilation as an acute, life-saving measure. Chronic underlying conditions (diseases, disabilities) may exist, particularly in elderly individuals. In a few such persons, it is later recognized that they cannot be completely weaned from ventilator support. A new set of decisions must then be made, either to withdraw ventilator support, or to continue ventilation, in a more prolonged fashion, as a life-supporting technique. In the acute care setting, when a patient is in acute respiratory failure, Make believes that it is always a physician's decision to use mechanical ventilation. The initial physician specialist varies who will decide upon the acute institution of mechanical ventilation in the emergency situation. For post-operative surgical patients, a surgeon or anesthesiologist will make the decision. Alternatively, physicians staffing emergency rooms and
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( OTA Task 5 Contract 533-4935.0 10/15/85 0 0 045'~ -7 -intensive care units are most commonly called. When the decision is elective, the primary care physician generally consults colleagues from pulmonary medicine, anesthesia, and/or intensive care. The initial de cision can result in a subsequent situation where long~tenn ventilation is required. It is lass clear who the decision-makers are at this point. In the chronic care setting, where a disease is progressing and respiratory failure is probable, the physician and the patient are the key decisionmakers, with input from the patient's inmediate family, generally the spouse or children. Final decisions for treatment must always b~ made, in Plunmer's and O'Donohue's opinions, by the attending physician who is ultimately respon~ible for all decisions affecting the patient's care. If house staff make the decision, it must be reviewed by the attending physician and agreed upon before action is taken. According to Frownfelter et al, decisions should be made in consultation with the patient, family, and other health care providers. In practice, there is usually a varying amount of input from the "team" members: nursing, respiratory therapy, physical therapy, social service, etc. At Rancho los Amigos, Prentice states that patients must be "coded" unless they request not to be. The staff tries to ascertain if the patient understands the expected outcomes in order to make an infonned choice. However, the decision is made by the patient. At Goldwater, Alba relates that the decision is made by a rehabilitation team, including a nurse, pulmonary technician, respiratory therapist, chest physical therapist,
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( OTA Task 5 Contract 533-4935.0 1011s1aso o 04S 1 -8 -resident physician, and attending physiatrist, trained in pulmonary rehabilitation. The decision is made. in practice. by the staff physiatrist, the r.esident, and the patient, with input from other members of the team. In. Canada, major factors influencing treatment decisions in severely ill patients have been concisely reviewed by the Canadian Law Refonn Commission (Report 20. Euthanasia, Aiding Suicide and Cessation of Treatment. Law Reform Conmission of Canada, Ottawa, Nov., 1983). In practice, competent patients can refuse ventilatory care, even if refusal will inevitably lead to death. The physician's obligation is to infonn such a patient fully of all options and consequences. These patients can not be treated against their will, and the role of the family in decision-making is minimal. Treatment of incompetent persons with initiation of ventilation, weaning, and \ withdrawal of care in Canada is more problematic. A decision in favor of life is always undertaken if treatment is considered "reasonable and useful 11 This places the burden on those who would stop treatment, or not initiate life-support therapies, to justify a decision which would result in death. The family is always involved as "surrogate decision-makers" for the patient. Byrick always emphasizes that he wants the family to decide what the patient would have wanted under these circumstances, not what they would want. This substituted consent must also consider quality of life issues.
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' \. OTA Task 5 Contract 533-4935.0 10/15/85 0 0 ij 4 g -2) In practice, what patient characteristics weigh most heavily in decisions regarding initiation of treatment, weaning, and withdrawal? Currently, in a dire, life-threatening situation, and without any knowledge of the patient's wishes, all available technology is applied. Elderly patients, in the emergency setting, are given full life-sustaining technological assistance to preserve life (Indihar). However, if time permits, and information cari be properly obtained and assessed, there are specific patient characteristics which are considered in the decision-making process. According to Byrick, the patient characteristics most influential are: competence to give truly fnfonned consent, severity and reversibility of -. primary disease process, prognostic estimates (see OTA Task 4, Byrick's previous discussion of prognostic uncertainty), response to treatment, and chronic health status (quality of expected life). Alba states that the decision to treat vigorously is strongly influenced by patient s desire to live. Make believes that the characteristics which weigh most heavily in decisions regarding mechanical ventilation can be categorized into 1) medical progno sis, 2) patient and family wishes, and 3) psychosocial factors. Specifically considered are the prognosis of the underlying disease which requires the institution of ventilation, presence of other underlying or chronic dis eases which may/may not complicate use of mechanical ventilation, medical assessment as to whether mechanical ventilation might be able to be successfully withdrawn at some future date, prognosis of the patient with or
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( OTA Task 5 Contract 533-4935.0 1011stflio 045J -10 -without the use of mechanical ventilation, nutritional status, psychological stability, ment~l status, and quality of life of the patient prior to the institution of mechanical ventilation. Plunaer states that the characteristics which weigh heavily in decisions regarding initiation of mechanical ventilation are: overall health of the patient, the number of organ systems involved, the reversibility of the lung disease causing respiratory failure, mental compete~cy of the patient, and the likelihood of a favorable outcome. Unusually, a patient is placed on a mechanical ventilator with a goal of home mechanical ventilation. Patient characteristics which weigh heavily in decisions regarding weaning include: respiratory muscle strength, the ability to take a deep breath and cough, mental clarity, the reversibility of the pulmonary disea$e, and the stability of associated medical problems of other organ systems. The same factors are involved with withdrawal from mechanical ventilation and extubation; they include specific criteria for the minimal vital capacity (15cc per kg ideal body weight), inspiratory force (+40cm of water), and acceptable arterial blood gases off mechanical ventilation. According to Frownfelter et al, Giovannoni et al, O'Donohue, and Prentice, the patient characteristics that weigh most heavily in decisions regarding initiation of treatment are the: primary and secondary diagnosis, nature and severity of the respiratory illness, long tenn condition, presence or absence of treatable disease, irreversible component of the disease (i.e. tenninal carcinoma), prognosis of underlying disease process, special circumstance (patient just out of surgery needing short term support of
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' (, OTA Task 5 Contract 533-4935.0 10/15/85 000454 -11 -ventilation), functional and mental status, age (younger patients seem to be more aggressively treated), financial status (insurance, independent funds). patient and family wishes and choice (although not always asked), patient compliance with health care, and quality of life. Weaning decisions are mainly based on patient improvement and mechanical ability to maintain a more normal pulmonary function without ventilator assistance (medical stability). Prognosis of the patient will also be considered before weaning is initiated. Weaning is_predicated on the measurement of weaning parameters (pulmonary function tests, arterial blood gases) which are_used to guide withdrawal of mechanical ventilatory support, and, ultimately, on clinical trials, which determine whether or not mechanical ventilation can be safety withdrawn. The process of weaning may take weeks, and at times months, before a final decision can be made. The final decision is a medical judgement. Withdrawal from the ventilator is considered when the patient har demonstrated over an extended period of time both strength (i.e. stable pulmonary function and arterial blood gases) and endurance (i.e. most of the day), perhaps only sleeping with ventilator-assistance. There should be the potential seen that the patient can regain adequate function in his/her activities of daily living. In these situations, prognosis is-very important, and patient choice is considered. Withdrawal ~f ventilator support may also o~cur in patients who are brain dead or who have no potential for useful existence with ventilatory support.
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( OTA Task 5 Contract 533-4935.0 10/15/85 roo45:, -12 -3) In practice, what factors influence decisions regarding transfer of patients from one setting to another? (e.g. nursing home to hospital, hospital to home) Elderly patients that are medically stable do not need -to be in a hospital ICU. A transfer to home or a less costly and more appropriate communitybased option is desirable. If, how, and when such a transfer is possible depends upon a number of considerations. Some factors which influence decisions for the transfer of patients from one setting to another ar~: availability of options; admission criteria; patient acceptance by the facility (long wafting lists); distance from family home and family preference; and the availability of private, public, or personal funds to pay for the alternative setting. Other factors include: physiologic stability of the patient, extent of need for medical input, number of hours of nursing care required; quality of medical care, including nursing and respiratory therapy; patient independence by self-care; prognosis; and quality of life. Thus, the medical status, level of care required, suitability of the environment, and financial factors are the major issues that influence such transfers. Being home with family members is always the ideal choice. Factors which influence a decision to send the patient home from the hospital include: successful treatment of the acute illness, control of diseases present in other organ systems, possibility of care in the home, and availability of c0n111unfty-based medical services. Transfer of patients from hospital to home usually occurs after ft has been determined that the patient's condition
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.I OTA Task 5 10/15/~ 0 0 4 5 6 -13 -Contract 533-4935.0 is clinically stable to the point that the patient can be managed outside of the hospital. This requires a team assessment and decision involvin~ the patient, family, physician, and other health care providers.* Resources for care outside of the hospital must also be available, adequately evaluated, and assured of reimbursement prior to discharge. Nursing homes are often the choice w~en the elderly cannot be discharged home. Furthennore, when patients are at home, they may be transferred to a nursing home when the physical and/or emotional -strain of caring for them 24 hours per day becomes to great for the family to bear (respite care vs. permanent placement). Factors influencing the transfer of patient from the hospf tal to the nursing home include: inabf lity of the patient to receive adequate care at home, due to the lack of family members present, or inadequate home health services; the intensity of care involved, due to the severity of the. patient's illnesses; the amount of rehabilitation necessary before the patient can be cared for at home; and the financial situation. The nursing home is not able to provide adequate care when the patient is medically unstable. Factors which influence the transfer from a nursing home to a hospital are: superimposition of an acute illness which is unable to be treated in the nursing facility and the deterioration of the Editorial C011111ent: It is my experience that hospital discharge requires a specially-designated core group who understand this process and who can aid their colleagues, the patient, and the family (Goldberg).
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' OTA Task 5 10/15/89 0 0 4 5 7 -14 -Contract 533-4935.0 overall health of the patient to the degree that a higher level of care is detennined necessary for proper management. Ventilator-assisted individuals are transferred from a nursing home to a hospital when they are in need of more skilled care or procedures. However, with the new DRG's, the patient in the hospital is transferred back to the nursing home as soon as they are relatively stable. Often this is too soon,as noted by the quick return back to hospital. Byrick believes that a major factor influencing decisions to transfer patients from one therapeutic setting to another is the availability of resources. The availability of ventilatory facilities outside acute care settings might alter criteria used to initiate such treatment. Open-ended, government-subsidized funding of such facilities, in poorly organ.ized nursing home centres for the elderly, would increase inappropriate utilization and must be avoided.* 4) In practice, what role does age play in these decisions? Is this appropriate? At the present time, age is not the major limitation on uti~ization of ventilator care, but rather ICU resource availability often limits its use, forcing appropriate consideration before treatment (Byrick). It must be emphasized that age is an extremely important factor in decisions to Editorial Conment: It is my opinion that the development of such options must be under the guidance of experts who understand these realities: professionals, consumers, and leaders from organizations that would be impacted (Goldberg).
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(_ OTA Task 5 10/15/85 Contract 533-4935.0 15 0 0 045S institute care as the elderly more frequently have irreversible disease processes and, often, limited chronic health potential (e.g. demen~ia). Byrick's experience suggests that many elderly survivors did benefit from ventilatory care during acute illnesses; however he suspects very few would be well served by a chronic ventilatory lifestyle (See OTA Task 4}. Make believes that age per se does not play a role in these decisions. Most physicians now recognise that chronologic age alone is not as important as the physiologic age of the patient. Two patients of the same age may have markedly different characteristics. One patient who is 70 years old may be holding down a full-time job, while another patient the same age may be malnourished, withdrawn, and home-bound with severe cardiovascular disease. Nevertheless, the tendency is to recognize that the elderly may not tolerate major invasive therapies as well as younger individuals. Additionally, older people have a reduced life-expectancy because of their age alone. Make believes it is appropriate to consider these realities. O'Donohue also believes that age alone is usually not a major determinant for the initiation or for the continuation of mechanical ventilation, in or outside of the hospital. More important than age is the disease process itself and the potential benefits to be gained by either short-tenn or longterm mechanical ventilation. Prentice notes that age plays no role in decisions at his institution; however, priority is given to referrals for admission from younger patients. Plunmer states that advanced age usually prolongs the care in the hospital and makes for more complex care at home, because of the co-existence of diseases in a number of different organ
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',, : '. r. ( OTA Task 5 10/15/85 Contract 533-4935.0 -16 -0 0 0 4 5 !} systems. Senility, if present, adds to the complexity of care and influences placement. Age per se usually does not affect placement decisions. Alba agrees that chronolog1c age per se is not a factor. Others disagree and believe that age is a strong factor in decision-making. This is inappropriate since the individual patient's condition and prognosis should be the important factors. Age alone should never be the sole factor for any.decision. There are young people who should not, in their opinion, be ventilated. Each person and situation should be evaluated o~ its own merit. Age should play a role in these decisions only to the extent that age impacts on the medical prognosis. They consider age as one, but not the only, factor in the decision. 5) What characteristics of elderly patients may receive inappropriate attention? No characteristics of elderly patients receive inappropriate attention (PluR111er). Others do not agree. O'Donohue states that being elderly may itself result in the patient receiving inappropriate attention. Elderly people may not have visible relatives who are concerned about their welfare; the elderly often may not have a patient advocate. Resources for acute and prolonged care may not be readily available. Giovannoni et al list three characteristics of elderly patients that may result in inappropriate attention by decision-makers when employing long-term mechanical ventilation: age, family support, and financial status. Frownfelter et al believe that the characteristics of the elderly that may receive inappropriate attention are often behaviors that may be thought of as
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OTA Task 5 Contract 533-4935.0 lO/lS/ffSO 046 0 -17 -typical of the elderly; issues such as sleep disorders, poor eyesight, and poor hearing are glossed over and often disregarded. In a younger popula tion, these problems might be recognized as the cause of dysfunction, but they are often chalked up to "old age" in an elderly populat;on. Alba de scribes the negative pat-ient who is always finding fault, and the anxious patient; these qualities create inappropriate attention. According to Make, other characteristics of elderly patients which may receive inappropriate attention include the: recognition of other critical disorders; know-ledge about the patient s prior life style; evaluation of disa.bi 1 ities related to age; assessment of the health of pa~ient's spouse and family; and awareness of the interaction of family members, including children and parents. Byrick believes that it is inappropriate for physicians to ignore the elderly patient's expressed desires concerning initiation or cessation of ventilation. These issues should be discussed with such patients before policy options are developed and certainly before prolonged therapy is undertaken. Such paternalistic decision-making may be more comon with t~e elderly when the physician assumes these individuals do not, or cannot, understand the therapeutic options available. It is also inappropriate for physicians to focus on one reversible aspect of a patient's disease (e.g. pneumonia) while ignoring unrelenting irreversible processes (e.g. cancer, dementia). Therefore, chronic health status and quality of life decisions are not only valid but essential in dealing with the elderly. \
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OTA Task 5 Contract 533-4935.0 10/15/~ 0 0 4 61 -18 -6) How are changes in the patient's condition evaluated, and how do these enter into treatment? O'Donohue .notes that changes in the patient's condition may be evaluated by any member of the health care team and may enter into the decision for either higher or lower levels of care. A patient may ~t times be transferred to a high level of care based primarily on observations by the nurse or respira tory therapist with agreement by the responsible physician. Transfer to a lower level of care usually takes more of a team approach in assessing all of the needs of the patient in regard to long-term ventilatory support. According to Plummer, all changes in patients' conditions are evaluated by a physician. Appropriate treatment decisions are instituted based upon the history, physical evaluation, and the supporting laboratory data. In Byrick's experience, changes in the patient's ventilatory condition are evaluated by physical examination and physiological monitoring using such techniques as chest x-rays, serial arterial blood gas evaluations, and lung compliance {stiffness measured using airway pressure generated hy the mechanical ventilator). Changes will reflect disease reversibility and response to therapy. In the acute care setting, such factors are important detenninants of weaning capability. If improvement does not occur with optimal therapy over a variable time period, withdrawal of ventilation is considered. Frownfelter et al states that changes in patient condition are evaluated by subjective means, such as clinical observation, and objective means, such as pulmonary function or blood gases assessment. Treatment decisions are
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OTA Task 5 Contract 533-4935.0 1011s1,r O O 4 6 -19 -based on these evaluations, which should be performed regular.ly. Changes in the patient's condition could profoundly affect decisions. If the patient has a change in medical condition, placement may have to be different, level .of skilledcare may be increased, and even a decision to withdraw support may be made by the patient, family, and/or physician. At Goldwater, patients are evaluated by an interdisciplinary respiratory re habilitation team well-skilled and experienced in pulmonary rehabilitation. This team includes a physiatrist, pulmonary technician, respiratory therapist, chest physical therapist, and assigned resident. In addition, a pul monologist is involved in cases of intrinsic lung disorders. For discharge planning, special staff members including social work, public health nurse, ( and utilization review are added. (7) Are decision-makers sufficiently knowledgeable about the elderly and about ventilation? Are they sufficientlyopen to the various treatment options? In general, health care professionals who deal with the chronically-ill are open-minded and supportive to patients regardless of their decision on the use of life-saving equipment. Indihar states that it is a co11111on misconception that physicians force the use of these devices. To the contrary, it has been Indihar's experience that physicians try to educate the chronically-ill patient who might require the life-saving machinery about their disease, prognosis, and likelihood of weaning. This is done in a non-judgemental fashion. The patient is supported in his/her decision, despite the subtle pressures from current legislative trends to deny and ration the health care dollar from patients who are chronically-ill and expensive.
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OTA Task 5 Contract 533-4935.0 10/15(,88 0463 -20 -Make thinks that decision-makers may not be sufficiently knowledgeble about both elderly individuals and the use of prolonged mechanical ventilation. The techniques and the management of patients receiving prolonged mechanical ventilation at home and alternate co11111unity sites is relatively new, particularly in elderly populations. In addition, the aging population has raised questions concerning many aspects of age so far unexplored; relatively little scientific information is available. On the other hand, Prentice states that decision-makers are sufficiently knowledgeable, and when specific questions arise, consultation is available from experts in geriatrics. In Plunmer's institutfoh, decision-makers have sufficient knowledge concerning the elderly. Usually consultation is requested concerning the patient's ability to maintain spontaneous ventilation, and the physicians requesting the consultation are quite open to the various treatment options available. At Goldwater, Alba states that professionals are open-minde~ as far as the law permits. Giovannoni et al states that knowledgeable decision-making depends upon the background and expertise of the individual health care practitioners and the hospital's past experience with the patient population. O'Donohue believes that the knowledge and skills of decisionmakers varies from institution to institution and region to region. An ul timate goal would be to establish regional centers in which such expertise can exist and to establish adequate and appropriate guidelines for the care of such individuals. These related experiences differ from that those of Frownfelter et al who believe that decision-makers in many situations may in incapable of effec-
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( OTA Task 5 10/15/85 Contract 533-4935.0 21 _o o o 4 6 4 tive judgements. Most medical centers and teaching hospitals have specially trained pulmonary care experts. However, residents may be handling the patients. In smaller conmunity hospitals, it may be the generalist or nonpulmonary physician making the decision. Most generalists and even some pulmonary specialists are not aware of home care options for the ventilator assisted individual. They are often not open to trying "new methods" or options. Byrick feels that physicians are sufficiently knowledgeable about the physiological limitations of the elderly. He believes that prognostic uncertainty is the major issue prompting the use of ventilation in_ circumstances where therapy is ultimately useless. Legal implications of withdrawing such care then become important for the physician decision-maker. Although the physician may be "open to the various treatment options" in these circumstances,,widespread availability of home ventilation programs may prompt physicians to delay appropriate decision-making, with costly and uncomfortable results for the patient and family.* 8) What is the impact of institutional norms and guidelines re: mechanical ventilation, including "do not intubate" orders and their interpretation? In Indihar's experience, all hospitals have a mission statement that places first the care of the patient. In no instance has he felt any institutional Editorial C011111ent: I share this concern. A system must be put in place to determine medical necessity and appropriate needs of the prescription and to assure the quality of its administration (Goldberg).
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OTA Task 5 10/15/85 Contract 533-4935.0 220-0 0465 pressure regarding medical decisions. However, with the advent of profit-motivated medicine, the cost factor for the care of these chronically-ill patients will play a major role in the decision-making process. O'Donohue believes that the question cannot be answered for all institutions. "Do not intubate" orders should be reviewed as part of the quality assurance process for every individual institution. Overall, this order should be reserved for those persons with hopeless disease for whom there is no chance of benefit by initiating mechanical ventflatione The concern is that these orders not be used to deny acute and possibly long-term benefit to pa-tients simply because they have severe disease or because they are elderly. Byrick states that the institutional availability of resources are very important in utilization patterns. The use of "do not intubate" orders and hospital guidelines (re: mechanical ventilation) vary widely. Ethics committees facilitate discussion and awareness of such issues as "withdrawal of care" and consent to treatment. Different situations are described by contributors to this question. Frownfelter et al remark that institutional norms and guidelines determine where patients are placed in the institution (i.e. ICU vs floor), whether automatic consults go to a pulmonary specialist, and whether patient wishes or "do not intubate" orders are observed. In contrast, Plu11111er states that there are no institutional guidelines regarding who should or should not receive mechanical ventilation. Generally end-stage cancer patients and those with end-stage lung disease do not receive mechanical ventilation.
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OTA Task 5 Contract 533-4935.0 10/15(P8 0 4 6 6 -23 -"Do not intubate" orders are arrived at by physicians after thorough discussion with the family, and, if possible, the patient. The overall impact is that patients who should not receive mechanical ventilation do not, cost savings are realized, and excessive mental anguish avoided on the part of the patient and family. Make does not believe that institutional guidelines concerning the use of mechani ca 1 ventilations genera l_ly impact upon the e 1 derly. On the other hand, more institutions are developing committees to assist in the decision concerning 1 i fe-supporting techniques. Interpretations of a "do not intubate" are clear. Gfovannoni et al state that "do not intubate" order is useful in providing clear direction for staff in terms of a decision-making process completed prior to and in anticipation of an acute event. They serve as established guidelines for this aspect of medical practice. These kinds of orders are by consent of the patient and family and must be frequently reevaluated. At Goldwater, there are norms created by a Professional Practice Committee and Bioethical Cofflllittee of the M~1ical Board. The physician staff there work within the framework of nonns and guidelines, and try to affect change in them when needed. (9) How and to what extent do religious beliefs and cultural values influence treatment decisions? Byrick thinks that religious beliefs and cultural lifestyle expectations can influence individual decision-makers. Respect for the value of life and individual autonomy varies widely when quality of life measures are con sidered. Frownfelter et al agree that religious beliefs of both the
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OTA Task 5 Contract 533-4935.0 physician and the patient play a role. a bigger role in the decision-making. The physician's belief probably plays Patients usually are not asked their religious belief re: ventilator assistance or death. They are usually not cared for by their family physician when in a hospital when on a ventilator. Often the initiation of ventilation is for a medical condition that requires a quick decision on the part of the physician, and time is not spent discussing the patient's religious beliefs. Make states that religious and cultural beliefs influence treatment decisions, not only by influencing the patient's reaction to mechanical ventilation, but also the reactions of physicians and ancillary medical personnel. Most often, patient's religious beliefs lead them not to accept prolonged mechanical ventiation. They interpretate this as an unnatural form of existence and the tampering of faith as detennined by God. Cultural and societal values are also important to patients. Individuals from sophisticated urban centers with sophisticated technological backgrounds are more likely to accept the use of machines to alter their lives. lndihar has found that most hospital chaplains of all religions tend to be supportive of the patient's decision, regardless if the patient chooses to be ventilated or not. The use of ventilatory support is considered by the majority of religious leaders to be "extraordinary" support; most chaplains/religions do not push the use of these devices to prolong life. The issue of withdrawal of a ventilator, however, is totally different and
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( OTA Task 5 10/15/85 Contract 533-4935.0 250_00468 much more complex. In most instances, when a p~tient wishes to have a ventilator withdrawn, the religious and cultural norms consider this to be $Ufcidal behavior, which is currently not acceptable in our society. In contrasting opinions, PlUR111er states that religious beliefs and cultural values have little influence on treatment decisions. At Rancho, since the decision is that of the patient, the patient's religion has no bearing on the staff. Prentice is unable to see any trends as far as religion regarding the patient's decision. O'Donohue claims that religious and cultural values affect a minority of patients, but can, in individual instances, prevent patients from getting the maximum treatment benefits that are available under the current health care system. If the religious beliefs are those of the patient, the patient is unwilling for treatment to be rer.aered, and the patient is mentally responsible, then such treatment is almost impossible to initiate and to continue. If, on the other hand, the religious and cultural beliefs are not those of the patient, there must be a mechanism to allow the patient's wishes and beliefs to prevail. Alba states that the desire to live or not cuts across religious beliefs and cultural values. The patient's own investment in life is of far greater importance -whether he can visualize himself as having a meaningful existence in these circumstances.
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( The Patient Perspective SISTERS of ST. FRANCIS 1200 LARKIN AVE. JOLIET, ILLINOIS 60435 OCT. 1, 1985 M1 BM~ aeete~ ALL'ill OOLDP.ERG, Si~-HOH MERVOlTS I AN TO NOT PLA.CE T~ CA '?IT')L Ill TYPEtntIT~R. 000469 I HA "-T.'. E3~N TRF ~ISF~IIBD TO JOLIET FOR 0O1D. THif: IB THE REASON I HA VE 'NOT ANSH~F.lID YOUR L:::TrER. I AH IH COHV'lNT n~ JOLIST I.EXT TO THE AC/, l"Sl'iY T~LEPHON~ 815-74M~ 4106 or 7 -address above. please forgive ne tor error again. ) !OR ?AST YEAR I HAV:, NOT USED Tl!Z ~~?IRA.TOR, BUT I HILL HELP WITH INFOREATION.. ) THANK YOU FOR nsnm ?ROLOHGED zc:IANICAL HE~'PIRATION. THAHK YOU FCR tmT PULLING THE PLUG OM 1-~ TO ~1m IT ,,LL THANK YOU FOR STAJIDING P.Y TlffilJ' ~PD-I.AL MNINGITIS TO THI~ DAY I A!! ALIV~ F~CAUS~ ~-!ITH DIALl~IS YOU l~~T lZ P.ECOWRitlG AFT~ FIV:~ CARDIAC ARRESTR. NOW I ,-1ALK "r!TH SIX FE1~, 2 NAT~'RAL Ai-TD WALIG::R HITH FOUR. raIBF~ATCD 74 ":EAR~ SE~T. 16 ..im TH!-.NK GOD A.ND YOtT I A}:, Vr~RY nmsP:-~nDEHT. I ~LA~ FOOD ON CA.RT AUD SHI!iT IT TO PLACE op ~~ATIUG. UA~H l:Y DISI!ES iTC. TN 1970 (DEC. 2l)wh4n i contracted spinal meningitis, i never drea1ned that i 1Y'llll) r-AKE GOLT>~H JUBILEE. THI~ DID HAPPE?I JETtE IH JOI-IET HHEN I F}.jj1-J Dl FRO!-: cr.:;VEIAlm OHIO. OUR COH:UNITY ?AID rouc OF NY CA~. Ar'Tlm l"OUR I-:Ot!THS AT l".ETRO r;~U~RAL IN CUVEIAND OHIO I S~~T TPO YEARS IU RECOV~~RY CARE IN COUVO::H.T D!FI:t::ARY. ms, THE;RE 1J.S POOT P.ROP, V~OETABLS ~TATi ~: AL.. THIS nII~ THEH Sl'BDElll.Y MAD~ G~AT n-:Ri>Rr,V~~Bl!TS TllllU' 'l'Hl~RA?Y IN CONV~UT DIFI1U'ARY CI\HE. Tt:C::: I WAS HOSPITALI~D o~:cg ST. AIZXIS HOSPITAL A?ID Oi'iC.~ AT HOt:; WITH IUAFILITY TO REl.OV.~ P~Gn~o TH~ R.~~~I:'.ATORY CHODEDYL, TAPPDIG OR CLAP~Itm Tf1EATl!~HT 0ItoVill Ht;H~FICIAL. I:! D~ S'!STER J!ARit: HBL!SD l'E THEtJ THS~ TF.EATI E!JT AL~O. MOH I tw.rILY iXPi:,CTORATb:.
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UHIV'll5E BULLETIN OF C LEVF.LA~!D p 3l. Jmi'E: 7, 1985 IY DEA :l DR. GOLDbER.., IS .l. VI_!ll'UE .l..]D YOU .. DID JUST T~HT 'FIFTH TH!ISE lT.A~ OF:-: LIVING >.S A !HIN IS !IERE. I CAIf'T BELIVE IT. >.1,m YOU ALSO !ADE ._,.: Sr. Ann .. Sr. Co~siline .. -~ Sr. Agnes IT POSSIBLE WIT:'>.~-. .. .... : .... .. .... .-.. .. n~ CH A'ii) c~:1CETtt:Joliet Franciscan Sisters ,I l .,rm YOU DID !lar Pl~ '''WiJ{ObServe anniversaries .. THE PLUG. TJF.V ~R DID,. Two former members o( Sl Procop Sister Agnes now lives at the Vincens Pariah will be amon1 36 Sisters uf SL tian Sisters of Charity Convent in Bed. I DREA?-! THIS DAY WAi Francia of Mary lmmaculate who will ford. She is a volunteer at the-Oak Park celebrate jubilees Saturday, June 22, in Health Facility, and involved in Legion.. i---Sl Raymond Cathedral; Joliet, m. They' of Mary promotion. and in proce:;sing ,. :are 1olden. jubilariana Sister Consilin~ stamps to benefit South American :: i_.r_.a_T I_ S IT I SHOULD! --~~ndrarak ~a~.~-_s_ -i~~e._ r ._A1nH (:Lud~ilh1.) mission:t. ,-rw. 11 Y"' Earlie:-she engaged in parish ministry : t ,.rRITE? YOC HAVE A I'. Among the diamond jubilarians wm at Our Lady of Mt. Carmel, Wickliffe,. n 1 .. be Sister Ann. Bartos, who tau.iht here and in volunteer work for the Wickliffe .. Country Place Nursin& Home. Copy OF .". ILT'~~S formany years, both at St. Procop and .. He: professional car~t:r in health care .-, .r:.1. .., Holy.Family parishes.~ involved dec3des of teac?ling science at. : SMIL~ w:IE?l yo;~ f!T-'AD :.-:: Silv~;Jubiiaria~~ ~11 i~cl;de Si~ter high school, nursing school and college : -Kathfee:i Bush ur, a teacher at St. leve!s in the Cleveland, Toledo, Joliet STILL f..OI'OEdwarc:l Ashland,.from 1963 to 1968; and Chicago dioceSc. Sh~ is a gTadaate THIS I A!! and Siatff Mary Ann Clar"9 at St. Jud~ of St. A!uis Hospital S:hool of Nursi.ng; from )963 to 1968, and St. Procop th~ her bachelor'~ degrff ,11 fMm CuUt!ge .~ WELL WIT!! .l.. WALKE!l Jollowini year. _: .. of St. Francis and her mast~rs from De : S -Co h h b h r Paul Unive:sity.Her gradl:ate si,1dies-/I~ 1&-.c.-011 1ne~ w o as a ac. e or s h be C L WEICH ~~A_~JS 6 feet degree rr.,m the Coalege of St. Fnncis ave en at at.;1oiic. Loyola and Notte : and a master's from De Paul University, Damf! univt!rsitie$. .. : has bee:r a teacher in a number of ChiSi:iter Agnt!s ha.Hl si:itu. Marie Van a.. -= of &!;en Hi1J111 car~ and' Joli.t dioces~ school.:S. Since E ~CB 1964ahehaabeenatSLFra:icisAcademy 1 4 0 :-tO\'ED TO HAP.! 1n Jo11e., where s':e no ... -orks i";M2.erel.Y l-?.16-5Z,i-9 9 .. ..._RC nAP!'r DAY T:fA~fK YOU 'buainesaofficeand isa:sistantlibrarian. : V/CATIO~J TILT., SE?T .. ...~.. 16th Siater Con,iline hs a brother and sis-_.:~ &er. Joaph Horak and Victoria ~avlik. 1.:-.'botli iiow 6vin1, in Dlinois... _,:; __ : .. :~ ~-.::.~-. : :>.. . tsk r or a jole )70
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\ \ 000471 Legal Precedents Re: Life-Support Beginning with the Quinlan cas~, several courts have h~ld that th~ right co privacy in matt~rs concening one's own body, as developed in Griswold v. Connecticut and Roe v. Wade, ia broad enough co ~ncompass a pati~nt's J~ci~lon to J~clinu life-sustaining treatment under certain circumstanc~s. CourtB have al~o used the common law right to be fr~t:! from bodily inva~ion as a suppl~mcnc or alt~rnative to the constitutional right argument. Many of th~ most rec~nt cas~s conc~rning this issu~ hav~ involv~d incomp~c~nc p~rsons, e.g., infants and comato~e pittients. Howi!Vdr, thert! ar~ some cases involving comp~ccnt pt:rsons. and chose involving incompetents often contain languag~ rcf~rring co comp~tcnt persons. Bartling v. Superior Court (Gl~ndale Adv~ncist Medical Center) This C~lifornia cas~. decided Dec. 27, 1984, is quite analogous to th~ situation now confront~d by liLMC. Thu puci~nt was a 70-y~ar old man suff~ring from cmphys~ma, chronic rc~piratory fail ure, artt:riosclerosis, an abdominal ant:urysm. a maglignanc tumor of the lung, and a histo1y of chronic acute anxiety/dcpr~ssion and alcoholism. Mr. Bartling had sign~d a "living will .. and made a declaration stating that he no longer wish~d to "continue the bur den of this artificial existt:nc~ which I find unbearable, degrading and d~humani-zing." He died b~fort! the appellate court hearing. but the court ruled on the petition rcgardl~ss. le held chac ch~ right of competent adult patients, with serious illness~s which are probably incurable to have lif~-support cquipm~nt disconn~cced oucw~ighs the intdrests ofThe state in thu preservation of life. the prevention of suicide, maintaining th~ ethical int~grity of the medical profession, and th~ protection of innocent third par ties. Note ch~ particular r~levance of the following language co che situation at BLMC: Th~ most significant of these interests is ch~ pres~rvacion of lif~. This is a prime concern to Glendale Adventist, which submitted a d~claration to the effect chac it is a Christian, prolif~ ori~nc~d hospital, the majority of whos~ doctors would view disconn~cting a lif~-supporc syscem in a case such as this one as inconsistent ,.) 7 /
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Page l\Jo 000472 with the healing orientation of physicians. We Jo not doubt the sincericy of real parties' moral und ethical beliefs, or their sincer~ beli~f in the position th~y hav~ taken i~ this ca~~-How~v~r, if the right of th~ paci~nt co s~lf-d~tcrminqtion as to his own m~dical cr~ac1nent is Lo have any 1ut:ar,ing at all, it must b\! paramount co tht: inter
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0 0 04 73 ., Page Thrt:c Matt~r of Conservacorahip of Torres Thia Minn~aota caa~ was decided November 2. 1984. The Supreme Courc ~f Minn~sota held that a person's conscitutionbl and/or common law right co forego lif~-auataining treatment, while not absolute. may be overridd~n only if th~ ~tate's int~r~sts are comp~lling. A footnote.in the opinion stated that a court ord~r is not r~quirc,l in sicuatio'ras wh~rc the attending doctor, the family and tht: t!thics coDIDittt:c ar~ .in ~srtt:eruent, howt!v~r., ... lhree. justices diss(;;nted from the footnote. In the Hatter of Conroy In this cas~, d~cided January 17, 1985. the Supr~mc Court of New Jersey found chat through the doctrine of informed consent, an individual generally has the right to d~cline to hav~ any medical treatm~nc initiated or continu~J. While the right is not absolute, th~ court found that th~ state inter~st in pr~s~rving lif~ will~ usually not foreclose a competent p~rson from d~clining lifesustaining treacm~nc "b~c.!aus~ tht! life thu.c th~ state is set:king co protect in such a situation is ch~ life of the same person who has competently decided to forego the medical interv~ntion; it is not som~ other actual or pot~ntial life that cannot adequately protect ics~lf.11 486 A.2d at 1223. Crouse Irving Hospital v. Paddock This is a New York case decided January 15, 1985. The court held that ~v~ry adult of sound mind has th~ right to d~tcrmine what happen:;; co his own body, including refusal of unwantt:d rru.:dical treatmt.!nt. Huwt!ver, the court found thal the pati~nt could nut refuse blood transfusions after ~l~cting to have surg~ry. In re L.H.R. This is a Georgia case, decid~d October 29, 1984, which held chat a competent adult patient has the right to r~fuse medical treatment in ch~ absence of conflicting scatc interest. ;J(..sarber v. Superior Court of State of California This cas~. decid~d October 12, 1983, involv~d criminal charges against two doctors for acceding LO a p~tient's family's request co disconcin~~ life-support equipment and incrav~nous tubes. Th~ court found that a comp~t~nt adult patient has the legal right co refuse medical creacmcnt; a physician has no duty co continu~ use of life-SU$taining machinery after it has become futile in the ~1pinion of qualified m~dical p~rsonncl; and there is no l~gal rc~uirement of prior judicial approval before any decision to withdraw life support for t~rminally ill paci~nts can be made. f J-73
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000474 Page Four Suicide Issue ....... Several cases discuss the. incerest the state has in preventing suicide and its relevance to a person's right to decline medical treatment. In Bartling, the court found that disconnecting a venti lator was not tantamount co aiding a suicide because it would merely hasten the patient's inevitable d~ath by natural causes. In Superintendent of Belchertown State School v. Saikewicz, a Maasachus~tt~ court atac~a tfiat th~ und~rlying stat~ ~nter~st is the prevention of irrational self-destruction, while the situation presented is a competent, rational decision to refuse treatment when death is inevitable and the treatment offers no hop~ or cure or preservation of lif~. Finally, the court in Conroy found that refusing medical intervention merely allows ch~ diseas~ to take its natural course; if d~ath wer~ ev~ntually to occur, it would be the r~sulc, primarily, of the underlying disease, and not the result of a self-inflicted injury. In addition, rejecting her artificial means of feeding would not con~titute suicide, as the decision would probably be based on a wish co be free of medical intervention rath~r than a specific intent to die, and her d~ath would result, if at all, from her underlying medical condition, which included her inability to swallow. 486 A.2d at 1226. J" .~ .. .~
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i' t I I ~1EMBERS MAKE PRESENTATIONS TO COUNCIL In rl'Sponse to the President's letter of June 1984 inviting members to make their views an_d concerns known to Council, three members were imited to attend Council and make presentations. It was generally felt that this pro\'ided an opportunity for memhers to meet the Council .1 nd to darify mi~conc\'ption~ about the workings 1f tJw Cnlll1ge. < ,u n( ii ,tl,t dC',t,t ed ~lm,e tim<' to considering ,!hlr rrH',rns by \\ hkh the aftivities of the College ,nl,i h" ,,,,1dl more vjsible tll both the profession .. J! ,d th\! public \\'hik no definite conclusions \\ l'J:e rcc1chld, the Executive Committee was djr,, h~d tt, ,,mtinue to consider the issue as 1 r,~,1tkr ,,f prfr,rity. h( fa,,uti\"t:' ~J~o reported t(> Council that ,, n"-id, r,,thm ,.,,,~ bc,ng gi\'en to holding some "f :lw me-dings ni the F.xtrutive Committee in Jiff t::--t;Jnt pi1rtc; l1f the Pro\'ince. The Exerutive C,,mmittlt' would then be available to mPet with :i;:mbl'r~ nf the lix,11 mC'dical communitv to ,~i~l'ntativcs from the Catholic '~\,,Ith As$ociatilm of Canada and th(' Law ,~c:ftnn C ummission of Canada. It was felt that this l'"int st~lknwnl provid'-'d phy!-tidans and ,:h\r ht'."?!th prnf,~,i, ,n,,Js with a U'-l'ful S(.Jlt 0 0 04 75 INTERIMREPORT November 1984 of guidelines. The Council supports these guidelin~s and recognizes that a "Do Not Resuscitate" order for a patient is appropriate in certain situations. If, in ihe course of c~ring for a dying patient, consideration is given as to ,,,hether to re5uscitate the patient when death occurs, the follo,,ing protocol should be implem~nted. 1. Clinical Criteria 1.1 \-Vhen the patient's condition is such that a decision should be made as to whether a "no r~uscitation" order should be written, that condition should be asses~<>d according to certain clinical criteria. 1.2 Those criteria are the best reasonable estimates made by the responsible physician, and a second staff phy~id,rn where appropriate, about the fol10wing: 1.2.1 the irreversibility of the patient's condition and/or the irreparability of the damage it has done; 1 .2.2 the length of time that it can be expected that the patient wiJl Jive with intervention or without intervention; 1.2.3 the consequences of the "no resuscitation" order, i.e. that.it m"y lead to the death of the patient before the time the physician has estimated. 2. Procedural Guidelines \\'hen the diniGll assessm(nt iustifies the ,,.,riling of a "no resusdtation" order, the follcm,'ing procedural guidl~lines are n~l"om m
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Competent patients have the right to make decisions about thC'ir treatment, if the patient so \vishes, family members may also be consulted; \\Then the patient is incompetent, the appropriate member(s)of the patient's family should normally be closely involved in the decision-making process. 2.1.2 The opinion of nursing staff caring for the patient should be sought; the opinion of other health care professionals involved may be sought, where practical. 2.1.3 If the attending phy~:ician h~ss nuu~ts about the clinical decision, a serond opinion should be obtained from another physician. (There may be circumstances in which a lack of time or unavailability of another physician predudes obtaining a second opinion.) 2.1.4 A "no resu~citation" order shall be duly recorded on the patient's record. ,.2 Tinplt:'l,,:;.~.:3fion 2.2.1 The '-nJlcr,111( ~.lf discu~~ions with the patie:nt and the family, ,1nd \'\ith the hospital staff, should be recorded in the chart along with their views. The physician consultants should record their opinion as a (On~u!fanl's note. 2.2.2 The health care personnel involved in the care of the patient should be informed of the decision taken and of thErationale for that decision. 2.2.3 The attending physician and the nursing staff should review a "no resuscitation" order at appropriate intervals. 2.2.4 A request by the patient to rescind a "no resuscitation" order should be implemented immediately. 2.2.5 If th!'re are unexpt.--cted changes in the pJtic-nt's condition, a nur5-c.> or another physician may rescind a "no Tl'~uscitation" order until the patient's nmJition can be reasses~fld by the .1t1cnding physician. 2 000476 3. Care of the Patient Pa11iativC' care to al1c,ic1te the nwnt,11 and physical discomfort of thf' ?~tiu,t ~h\ ,,,:d be provided at an times. MEDICAL REVIEW COM~11TfEE UNDER REVIEW The President reported to Council that a Tripartite Committee had been established to re\-iew policy issues and procedures related to the referral of OHIP claims to the ~1edical Review C0r.1:-:1ittee and the procedures foJJowed by the C"';;rn1ittee itsdf. In rc5p(;nsct0 c-itici~:n from the profession concerning the ~1edical Review Committee activity, the Executive Cc,1rn1,iUce of the College met with both the Ministt'r of Hl'alth and \,ith the Ontario ~1edka1 Asso(iati(m and recommended that a Tripartitl') group be established ,-vith senior representatin.!:, frf,m the Government, the Ontario !\edica1 A~~nciJtiw Commith.c 1s producin.g a distorted view of the Ct,llegc so far as its primary role of devel0ping and maintaining standards of medical prartkt."'. n,e Pnsident w~nt on to sa, that th( .. re !"1as bc(n l.._ .J Cl11,tinues to be ronsidt:iJblL misu ndu ~l,mli; ng as to how the audit svsfl.>m ,,orks and \\'hich elements are entire)); ou !side th(' Collc:ge's control. The Tripartite Committee so far has flnsidered issues such as the provision t0 physicians of an abbreviated personal daims profile which might a1ert physicians to patterns of billing which could ]cad to referral to the Medical Review Committee at a later date. The Committee is also considering means by which the assessment of physicians' bi11ing patterns can be accelerat()d by OHIP so that if a ref err al is to be made it can be directed to the MRC as soon as the bil1ing pattern b<>rnmes questionable in the \'iew of OHIP. A major concern of the profession has been the de)ay in referral of physicians' daims lo the Ml')dical ReviC'w Committtte which m('Jn~ that a physician may be revi(wf:'d for daims t.xknding
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Ct 533-4935.0 Contra 000477
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OTA Task 5 10/15/85 Contract 533-4935.0 -26 ) 0 04 78 10) Is the elderly patient an active participant in decisions about initiating and continuing care and about weaning? Is she/he able to give informed consent? What are the methods of detennining the patient's preference? What is the role of living wills and other advance directives? According to Make, elderly patients are active participants in decisions concerning ventilation, and they often are able to give informed consent. Age per se is not a limitation in this area. In many cases, physicians who are aware of a possible need for mechanical ventilation or other lifesustaining techniques have discussed these issues with the patient well in advance of the need for the techniques. Patient preference concerning these techniques are known and documented by these physicians. However, in other cases, these issues have not been discussed, patient preferences are -not known, and the patient may well be incompetent to give infonned consent. This is due to temporary altered mental status because of respiratory failure, and associated hypercapnia, acidosis, and/or hypoxia. Living wills, other advanced directives, as well as the decisions made by close family members are very important in directing care under such circumstances. In contrast, Frownfelter et al believe that elderly patients are often not active participants and that their preference is not an issue in the deci sion. Many patients are {or are perceived to be) unable to understand, poor cornnunicators or historians, not "responsible" or capable of making decisions, and difficult to deal with. There is usually more involvement by the patient when the care is more long-term. Living wills are accepted on a state-by-state basis; there seems to be a great deal of variation. This is
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OTA Task 5 10/15/85 Contract 533-4935.0 -27 -0 0 0 4 7 ~-: confirmed by Alba who states that, although the living will is not a legal document in New York State, the patient's wishes are respected. Plurnner states that mental competence and clarity, regardless of age, are important factors detemining whether or not a patient participates in decisions concerning initiation, continuing mechanical ventilation~ or weaning. Weaning decisions are made by physicians and discussed with the patient. The decision to extubate requires satisfying the clinical criteria already mentioned as well as a conscious, cooperative, well-informed patient. Infonned consent is obtained from the mentally-intact patient regardless of age; interrogation of the patient is the best way to determine preferences. Alternatively, if not able to be interrogated, the family -usually can provide infonnation on preferences. Comatose patients can be extubated. Living wills and other advanced directives are honored in Plurnner's institution. Dr. Alba believes that if the patient is fully competent and what is re quested is within the law, the request will be honored, including refusal of treatment. The patient has a right to refuse treatment in writing; this is respected in New York State. With an incompetent patient, the families wishes to withhold treatment cannot be honored unless they go to court. O'Donohue believes that the patient must be involved in the decision for long-term mechanical ventilatory support unless severely mentally-impaired. The goals of long-term ventilator management could never be accomplished in a
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OTk Task 5 10/15/85 Contract 533-4935. 0 28 Q O O 4 8 {) patient who is not desirous of this form of therapy. In patients who are acutely ill, the decision for intubation and mechanical ventilation may be made in consultation with family or the nearest living relative. In the acute circumstance, patients are usually not capable of making this decision alone. Living wills or other advance directives would obviously have to be considered in the context of their legality relative to the acute management of patients in respiratory failure. Interpretation may need to be obtained from the hospital attorney in situations where the will is in variance with the medical op_inion or the stated desires of the family. Indihar notes that with the chronically-ill patient, it is becoming very common to ask the patient initially, before consideration of life-saving technologies, to decide whether or not they wish to be placed on a ventilator or cardiac-resuscitated. Interestingly, with time, education, and support, only about 50% of the patients make the decision not to be ventilated or resuscitated. The usual answer is, "If you think I' 11 make it, please use the machinery. 11 As already noted, Byrick relates that, in Canada, major factors influencing treatment decisions in severely ill patients have been concisely reviewed by the Canadian Law Reform Comnission. In practice, it must be emphasized that competent patients can refuse ventilatory care even if refusal will 1nevitably lead to death. The physician's obligation is to inform such a patient fully of all options and consequences. Increased patient participation, prior to the need for the institution of ventilation, is ...
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OTA Task 5 10/15/85 Contract 533-4935.0 2fY0481 essential. These patients can not be treated against their will, and the role of the family in decision-making is minimal. Treatment of incompetent persons with initiation of ventilation, weaning and withdrawal of care fs more problematic in Canada. A decision in favor of life is always undertaken if treatment is considered "reasonable and useful". The bias mustalways be in favor of life if the patient's wishes are not known. This places the burden on those who would stop treatment or not initiate life-supportive therapies to justify a decision which would result in death. The family is always involved as "surrogate decision-makers" for the patient. Byrick always emphasizes that he wants the family to decide what the patient would have wanted under these circumstances, not what they would want. This substituted consent must also consider quality of life issues. 11) How and to what extent does practice vary in different parts of the U.S.? The contributing authors to the above question were selected, in part, because they represent a variety of professional disciplines, care settings, and regions of the U.S.A. Inherent in their individual answers already are a variety of opinions that reflect these regions. O'Donohue specifically noted that the major differences in practice are related to the size and capability of the institution more than the geo graphic location. Small and rural hospitals frequently do not have an adequate team to address all of the problems relative to long-term ventilator care. Larger medical centers are more likely to have adequate personnel and
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( OTA Task 5 10/15/85 Contract 533-4935.0 -lP0-04 82 skills. There are, of course, individual exceptions. Some large institutions are not prepared for this form of therapy, and, in fact, may not wish to be involved. Facilities for long-term ventilator care, including necessary support services, are also more likely to be available in urban areas than in small rural comunities. Frownfelter et al related that there are tremendous differences even from one hospital to another in the same community. Plu11111er does not know how practices vary in different parts of the United States, but he suspects that the variations are minor. (12) What is the impact on treatment decision of existing legislation or particular legal precedents? All contributors agree that the uncertainty and risk of medical liability is a major issue. Legal precedents are important as most doctors are con scious of their vulnerability for lawsuits (Frownfelter et al). All physi cians are quite concerned about the possibility of litigation if incorrect or improper decisions are made (Plunwner). However, he feels that treatment decisions are influenced little by existing legislation. Make believes that legislation and legal precedents are very important in influencing treatment decisions, particularly when patients cannot give informed consent, and when the will of the patient is not known. Due to the rapidly increasing number of malpractice claims and rising malpractice premiums, physicians are acutely aware of not overstepping legal boundaries. Indihar states that withdrawal of life-sustaining machines has been a legal dilemma for many physicians due to recent court cases, none of them yet successful, in which the physician,
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OTA Task 5 Contract 533-4935.0 10/15/85 31 V 00483 despite carrying out the patient's and family's wishes, has been sued for criminal intent and murder.* At Rancho, the rule regarding 11no codes" was approved by the County Board of Supervisors; th-is was because Rancho is a county hos pi ta 1 According to Prentice, court decisions in California have ruled that the patient has the choice in the question of extension of life. At Goldwater, there is a strong influence of existing legislation and legal precedents in view of the malpractice climate. Byrick believes that prognostic uncertainty is the major issue prompting the use of ventilation in circumstances where therapy _is ultimately useless. Legal implications of withdrawing such care then become important for the physician decision-maker. Legal precedents make physicians wary of limiting the care if the decision has not been fully discussed prior to clinical deterioration. Clarification of the physician's legal status would facilitate appropriate decision-making. According to O'Donohue, one of the major problems with Medicare legislation is that it does not provide a financial incentive for mechanical ventilation in the home or at alternate conmunity sites. Under the prospective payment system, hospitals clearly have an incentive for early discharge, but the same incentive does not exist for treatment centers outside of the hospital to *Dr. Indihar is referring to cases such as Barber V. Superior Court of State of California. Please note legal cases provided by Or. lndihar for review by OTA (Appendix).
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OTA Task 5 10/15/85 Contract 533-4935.0 320-0 0 4 8 4 accept patients who require mechanical ventilation. Often reimbursement is available only for licen~ed practitioners in the home where appropriate care could be rendered by less-skilled individuals. Thus, current Medicare policy tends to inflate the cost of home care and often leads to exhaustion of available funds. When asked to provide additional comments about the effects of current legislation, O'Donohue responded: "Globally, legislation for reimbursement of Medicare and Medicaid patients favors hospital reimbursement with severe limitations on reimbursement for special care of patients outside of the hospital setting. Th;s becomes particularly important with the increased pressures for early discharge of patients who are more aiutely ill. It is extremely difficult to find facilities which are willing and able to accept patients who require mechanical ventilation, primarily because those facilities are not appropri ately reimbursed for the type of care they are being asked to render. Funds which are available for home care are also severe ly limited and at times the regulations for reimbursement of only licensed practitioners tends to inflate the costs when these ser vices could, in fact, be adequately provided by caregivers with less skill and formal training. In other words, the very high cost of skilled caregivers frequently exhausts available funds and results in home care becoming prohibitively expensive. This is not to say that licensed practitioners may not be necessary in some individual cases but there needs to be an option to allow the least expensive care possible to fulfill the needs of the in dividual patient." "Clearly, current legislative decisions regarding reimbursement have an impact on treatment decisions in that patients may stay in the hospital longer than necessary if appropriate resources are not available for long term ventilator care, or alternatively patients may be discharged from the hospitals prematurely to sites that are not adequately prepared for the management of this type of i ndividua 1."
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OTA Task 5 10/15/85 Contract 533-4935.0 -33 9 0 0 4 8 5 An Invited Conmentary As a supplement to this report, the following cornnentary was offered by Sister Corrine Bayley, Director, Center for Bioethics, St. Joseph Health System, Orange, California: 11I think that the issue of withholding/withdrawing ventilatory support from permanently comatose patients, while still troublesome, has achieved a considerable amount of consensus in recent years. Several court cases, from the Quinlan case in 1976 to the recent Nejdl/Barber case in Los Angeles have expressed the opinion that life-prolonging treatment need not be provided if it will not benefit the patient. Many hospitals have recently fonned ethics coR111ittees and have developed guidelines regarding the discontinuation of mechanical ventilation in patients for whom there is no reasonable hope of recovery. In 1982, the American Medical Association's Judicial Council stated, 'Where a tenninally-ill patient's coma is beyond doubt irreversible and there are adequate safeguards to confirm the accuracy of t~e diagnosis, all means of life support may be discontinued.' Several medical associations and joint medical and bar associa tions have written guidelines affirming that approach. 11 "One that I support is the recent Durable Power of Attorney for Health Care law enacted in California. This statute allows a competent individual to name someone to make health-~dre de cision~ for him/her in case the signer becomes incompetent. Since one of the main things we need to k,,Jw in situations of medical treatment is what the patient would have warte~, this seems to be a helpful approach."
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OTA Task 5 Contract 533-4935.0 10/15/85 -34 0 0 0 4 8 6 (13) How does practice in the U.S. compare with practice in selected other countries? Why and with what results? All involved contributors were asked to conment about their knowledge of foreign experiences. One major contributor (Byrick) related his own person al observations from Canada; Byrick states that the overall Canadian experience is fragmented and poorly described. He has noted that the College of Physicians&. Surgeons (Ontario) have prepared and distributed guidelines for DNR orders (Appendix). There is a false assumption that the Canadian malpractice atmosphere is the same as in the States. The major differences are that: 1) there are no lawyer contingency fees; 2) all physicians are insured under a single physician-run Canadian Medical Protective Agency (CMPA); and 3) malpractice issues are seldom settled out of court. If a -case comes to court, it must have true merit as malpractice. Thus, the Canadian physician is less concerned about litigation than his/her counter part in the U.S.A. Byrick concludes that decision-making factors are hard to sort out which determine a DNR order in a critical care setting. However, there seems to be little difference between Canada and the Ll.S.A. regarding the implementation of mechanical ventilation; the differences, if they exist, are in withdrawal. Frownfelter et al felt that the United States seems to have little to offer ventilator-assisted individuals compared to England and France. Our health care system and lack of conmitment to the needs of the patient with ventilator-assistance accounts for the difference. Plummer believes that the French system provides for a community level of care available to patients who require mechanical ventilation that is not present in our country. Both
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( OTA Task 5 10/15/85 Contract 533-4935.0 -35 -0 0 0 4 8 7' the French and English systems seem to be successful because of professional expertise in this area and the patient selection and education which occurs before _placement in the home or alternative conmunity site. O'Donohue stated that other countries, which have been most successful in managing ventilator assi~ted patients outside of the hospital, have usually utilized a regional approach with regional centers providing expertise for this type of care. Appropriate funding has been made available and a hierarchy of care has been established, including an acute care hospital, an intennediate care facility, and a home care organization which can provide services, equipment, and personnel. For every hospital in the United States to attempt to provide this type of care would be extremely inefficient, and the quality of care would suffer considerably. In 1983, as a Fellow of the World Rehabilitation Fund, Inc., I {Goldberg) had the opportunity to study the issues facing ventilator-dependent persons in England and France {World Rehabilitation Fund, Inc. International Exchange of Experts and Information in Rehabilitation Fellowship Report #20. Home Care Services for Severely-Physically Disabled People in England and France. Case-Example: The Ventilator-Dependent Person). What follows is a description of the systems in place in those two countries that serve the population as it relates to the OTA question. I will incorporate several co11111ents from Dr. Spencer {London) I specifically requested for this OTA project.
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OTA Task 5 10/15/85 Contract 533-4935.0 360-0 04 88 England The 11Responaut Program" is an established system of services avaUable to ventilator-assisted people*. This regional program features the Phipps Respiratory Unit {PRU), a base-unit at St. Thomas' Hospital, London. The PRU provides Dr. Geoffrey Spencer and his highly-experienced respiratory rehabilitation team a site for comprehensive care, preparation for home discharge, and subsequent reevaluation. Of major significance is the PRU home maintenance service, which provides prompt emergency attention and personal surveillance of each responaut in the community. Responauts can be found at home with their families or at a variety of suitable community options. They have available access to learn about, acquire, and use technical aids, which provide great deal of independence. Nevertheless, the elderly responaut may require a group-living arrangement when family members are no longer available or able to provide personal care (Cheshire Home). The significance of the "Responaut Progam11 is that a system is in place that makes posc;ible essential and comprehensive institutional and conmunity_ services and that choices and options are available. This program does not mean that elderly persons are sustained needlessly and/or exist in large numbers because the system is in place. However, when a general practitioner or specialist chooses mechanical ventilation for their patient, there are available resources to enable this to be done properly. A responaut is the term coined by ventilator-assisted English people during the early Space Age. Like the astronauts, they wanted to venture out of institutions into the unknown -their conmunities.
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\ OTA Task 5 10/15/85 Contract 533-4935.0 #Q0489 Spencer states that there are major differences between England and America over when, how, and where it is appropriate to use long-tenn artificial ventilation. Clinical practice in England is more conservative; there is considerable reluctance to embark on long-term ventilation unless there are strong individual positive reasons for doing so. Indeed, part of his job over the past seventeen years has been to advise medical colleagues how best to allow patients receiving artificial ventilation, for whom its continuance seems inappropriate, to die in reasonable peace and di_gnity. Medical and public opinion in England holds strongly that it is morally, professionally, and socially inappropriate to insist that artificial respiration be continued just because it is possible to do so. In England, the wishes and opinions of the patient, his/her relatives, and medical advisors have overriding priority, regardless of legal considerations. Dr. Spencer noted that the doctor in charge, after due consideration with all concerned, is the decision-maker in England. He personally thinks that the decision must never be passed to relatives, who are too close for objectivity and live thereafter with the guilt of a negative decision. A positive decision requires a young patient, normally under forty, of at least average intelligence, who will be able to develop intellectual skills and have realistic future objectives in life. Although age is not an absolute factor, a positive decision is seldom made for patients over sfxty. Spencer believes that the prognosis of the underlying disease is the all important evaluation factor. Correct individual evaluation should make the decision obvious. Institutional norms and guidelines do not affect the
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\ OTA Task 5 10/15/85 Contract 533-4935.0 -38 -0 0 t/ q () decision; the decision depends solely on individual assessment. Finally, Spencer remarks that legislation and legal precedents hardly affect the decision-making process ,n England. He believes that this is a major difference from the current realities in the U.S.A. France The French have a system in place which permits multiple options for the patient requiring prolonged mechanical ventilation. The system features 28 regional associations which provide needed services, care-monitoring, and quality-assurance. Regional associations vary, but are modelled after the original ones created 1n_the 60's: the ADEP (Paris) and the ALLP (Lyon). These original associations today provide essential services to 1200 persons in Paris (ADEP) and over 700 in Lyon (ALLP). Of note, those served are not only ventilator-assisted, but also oxygen and other technologies-dependent. The services were expanded at the request of governmental reimbursement authorities, who helped create the system in the first place. The regional associations are federated by a national organization (A.N.T.A.D.I.R.) which has recently been responsible for the development of the newer associations. In addition, A.N.T.A.D.I.R. fosters national research and surveys providing needed data and analysis by the regional associations (to improve services), and by the government (todetermine public policy). As a result of medical, technical, social, and administra tive studies, the number of ventilator-dependent patients are known, and many of the questions posed by the OTA have been answered in Franc;e. For example, at a recent national meeting in Lyon (3/85), it was stated that there are
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I OTA Task 5 Contract 533-4935.0 10/15/~5 uoo:rqL -39 1approximately 50,000 people in France with chronic respiratory insuffi ciency who require specialized care. Of these, 12,000 persons at home receive respiratory care for 12-24 hours/day at home. Among this subgroup are 1200 people who require prolonged ventilator-assistance. A.N.T.A.D.I.R. is currently revising the future procedure for home ventilator care as a national policy. As before, all decisions will be made by a prescribing physician (generalist, specialist), with the patient and family involved. This is vital because, in France, the home care of the ventilator assisted person depends upon the role of the family and self-care. A de fined prescription will be standardized; each will be reviewed by a physi cian in a regional association. Only after modification or approval will the .. prescription be funded and implemented. The association will continue the surveillance of the patient at home to be certain that the prescription is medically-appropriate and delivered as intended. Previously, it was possible for a physician to write prescriptions directly to the reimbursement authority and to have ~t filled by a pharmacy or vendor. Because this proved to be inappropriate and expensive, this new process will be established by A.N.T.A.D.I.R. This will be only one of many cost-saving measures estab lished by A.N.T.A.D.I.R.; others include negotiation with manufacturers and reimbursement authorities, mass-purchasing, inventory and depreciation reduction strategies. Oil
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OTA Task 5 10/15/85 Contract 533-4935.0 40 _o o o 4 92 In France, the physician and family have a choice of options which include services at home, independent living center (foyer), secondary intermediate center (transitional care), and respite care. In addition, the French government has authorized officially a personal care attendant to supplement family members. These options are viable for the elderly. At the 3/85 Lyon meeting, the French were asked by the English if they would provide such services to a person over age 65. The answer was "oui". When further questioned, the response was, "mais, c'est nonnal!" It is clear that cultural factors play a large role in France. The Netherlands Other nations have begun to recognize that the ventilator-assisted individual represents a medical and societal issue to address at the national level. In August, 1985, all identified physicians that care for such patients in Holland were assembled at the State University, Groningen, to attend a roundtable conference about these realities. Under the direction of Henk J. Sluiter, M.D. Professor of Pulmonary Diseases, and Head, Respiratory Care Unit, the meeting assembled the following data and conclusions: 1) Number of home-care patients (ventilator-dependent): 50 2) Number of chronic ventilator patients in hospital or specialized units: 48 3) Nearly all patients are ventilated only part-time during 24 hours. 4) Indications or criteria for this treatment: not standardized.
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l OTA Task 5 10/15/85 Contract 533-4935.0 41900493 5) Total number of patients who should receive the treatment: unknown, depends on the criteria of each center. 6) Marked differences between the different centers in: a. diagnostic categories; b. therapeutic modalities. (e.g. Utrecht: nearly all patients via tracheostomy (TIPPY); Groningen: many patients with cuirass ventilator). 7) Only an exceptional patient up to now treated with oral positive pressure ventilation (MIPPV). These preliminary data have been offered to the OTA with the understanding that proceedings will be available in late 1985.
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( ( Care for Life Contract 533-4935.0 LIFE SUSTAINING TECHNOLOGIES AND THE ELDERLY PROLONGED MECHANICAL VENTILATION TASK 6. CONCLUSION AND IMPLICATIONS October 15, 1985 Prepared By: Lu Ann Aday Marlene J. Aitken Susen Dunmire Donna Frownfelter Sam P. Giordano Bernard Goldstein Frank J. Indihar 000494
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( Contract 533-4935.0 TABLE OF CONTENTS OFFICE OF TECHNOLOGY ASSESSMENT LIFE SUSTAINING TECHNOLOGIES AND THE ELDERLY PROLONGED MECHANICAL VENTILATION Task 6. Conclusions and Implications 1) How important and how urgent are problems related to 0004:)o mechanical vent11ation? 3 2) To what extent do these issues have special significance for the elderly? 6 3) What issues can be settled by professional, community, or private sectors (without congressional actions)? 8 4) What issues require congressional actions? 11 5) Is it feasible to propose treatment guidelines for mechanical ventilation? 12 6) What aspe~ts of mechanical ventilation and the issues it raises call for additional research? 14 7) What is the potential for reducing the rates of lung disease and other conditions leading to ventilatory insufficiency and failure in elderly persons? What po-tential problems can be prevented? 15 8) What particular issues and problems should be priorities public attention? 17 9) What existing problems may be amenable to public policy change? 19 l. 10) What are some of the public policy options? 21 References 22
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( \ OTA Task 6 i0/1S/1f O 0490 -1 -Contract 533-4935.0 LIFE SUSTAINING TECHNOLOGIES AND THE ELDERLY PROLONGED MECHANICAL VENTILATION TASK 6. CONCLUSION AND IMPLICATIONS The questions raised by OTA in Task #6 were asked to selected contributors of previous tasks and other appropriate experts who responded to each question as an original contribution. Their answers were collected, reviewed, and organized by Ed Roberts, Founder, World Institute on Disability, and his staff, especially Patrick Connally, M.A. When possible, efforts were made to relate conclusions and impli~ation to infonnation presented in the preceeding tasks of the report in order to provide qualification and further amplification. The expert contributors were: Lu Ann Aday, PhD -Research Associate (Associate Professor), Assoc~ Director for Research, Centtt fur Health Administration Studies, Graduate School of Business, University of Chicago Marlene J. Aitken, MAMS, OTR/L -Study Director, Research Project Specialist, Center of Health Administration Studies, Graduate School of Business, University of Chicago Susen Dunmire, MA -Research Project Assistant, Center of Health Administration Studies, Graduate School of Business, University of Chicago
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( OTA Task 6 Contract 533-4935.0 10/15/85 -2 -Donna Frownfelter, RRT, PT Editor, Chest Physiotherap,v and Pulmonary Rehabilitation. Board Member, Chicago Lung Association; Co-Chairperson, Chicago Lung Association Ventilator-Dependent Adult Project; Director, Chest Physical Therapy, Rush-St. Luke's Presbyterian Medical Center, Chicago, IL. Sam P. Giordano, MBA, RRT -Executive Director, American Association for Respiratory Therapy, Dallas TX. Responsible for initiating two national surveys re: ventilator-dependant adults (1983, 1985). Bernard Goldstein, PhD Professor of Sociology; Rutgers, The State University, New Brunswick, NJ. Dr. Goldstein has a long-term interest in medical technology and its impact on the delivery of hea 1th care. ~~ank J. Indihar, MD Practicing Internist/Pulmonologist. Innovator of chronic respiratory care unit at a large medical center -Bethesda Lutheran Hospital, St. Paul, MN Ed Roberts, Founder, World Institute on Disability. World authority and public policy expert on issues concerning disability and the independent living movement. A ventilator-assisted person during all of his productive adult life.
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\ OTA Task o 10/15/85 -3 Contract 533-4935.0 000498 1) How important and how urgent are problems related to mechanical venti lation? In an attempt to promote cost-containment, the costs of providing critical care for the elderly has come under increased scrutiny. The critically-ill person uses enonnous quantities of hospital resources (Task 4 Byrick). Great amounts of time, space, personnel, and highly sophisticated equipment are used to sustain life and initiate the recovery of the critica~ly-ill. An important aspect of critical care is ventilator support, and there is a great deal of discussion in medical, political, and lay circles as to the cost and the efficacy of this care (Task 4 Byrick). Until now, no comprehensive survey initiative has been taken to detennine utilization and cost (Task 3). Many persons, professional and the laity, think of ventilator use for the elderly as needlessly prolonging the life of tenninally-ill patients. However, ventilation 1s not only used to sustain life but also to ini~iate recovery and tc allow the elderly person tr have a more proaw~t,ve life (Task 2 and 4 -Alba and lndihar). The decision to pu~ the terminally-ill individual on a respirator has generally been exclusively a medical one, with little or no thought to the long-term effects on the person or his/her family. The literature and conments from this study predict that this practice will decrease (Task 3 and 5). Many physicians before ventilating a patient are now considering the age, overall condition, and whether prolonged ventilation is the choice of the family and person. Many individuals are requesting
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( \. OTA Task 6 Contract 533-4935.0 10/15/85 -4 000439 "no code" through the making of a "living will". Physicians are seeking informed consent from the person if competent or from the family if the person is incompetent {Task 5). The decision to place a person on a ventilator to initiate recovery is less difficult to make. However, there are several psychosocial aspects of the consequences to consider (Task 4 Byrick, Pfro11111er, Laurie). If the person will only be ventilated for a short time, there are few problems. If not, questions of placement become relevant. There are a limited number of chronic care facilities available to care for ventilator-assisted individuals (Task 3), and most families would need extensive training to care for the patient in their home. One of the greatest fears of the elderly is the fear of dependence. In this instance, the ventilator assisted person is dependent not only on a caregiver but also a machine. The important issues of r.-'!C~ianical ventilation to the elderly seem to be more psychosocial than medical: 1) the desire to have some control over the decision to prolong their lives and 2) the fear of the dependence on their families that prolonged ventilation could create (Task 4 Pfrornner, Laurie). The cost issues, which may or may not be of concern to them, could be eased with responsible informed decisions to ventilate and the development of alternative placements from ICU's to home or chronic care facilities (Task 5). In view of the current legislation and hospital reimbursement policies (DRG Prospective Payment System), it is necessary that the issues sur-
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( ( OTA Task 6 10/15/85 -5 -Contract 533-4935.0 00050J rounding the use of mechanical ventilation for the elderly be resolved {Task 5 -O'Donohue). These issues, which currently apply to the elderly, may also be applied to younger patients requiring lifesustaining technologies. If the Medicare prospective payment system reimbursement is applied to Medicaid (welfare) medical payments, the tendency will be to deny this type of care to any chronically-ill patient For instance, the DRG payment to a hospital for a patient with chronic obstructive lung disease is only approximately 10 days; if the patient requires ventilation for ventilatory failure, the hospital gets absolutely no further reimbursement until hospitalized for .. 1pproximately 30 days, at which point a minimal daily reimbursement is given to the hospital. This usually does not cover the hospital's expenses. Hos-. pitals cannot be expected to underwrite the care for these patients. Is there a subtle message that such legislation is giving to the health care professional: do not waste the health care resource dollar on the chronically-ill patient, regardless of age, who needs a respirator? Another urgent issue is the prolonging of death by abuse of technology (Task 4 Alba). Many people may not be rendered brain dead by severely decapacitating cardiopulmonary conditions, but may remain either in a semi-comatose or comatose condition for many months or even years. With the law as it stands today, such patients must be maintained on ventilators until death from other causes. Is this not another example of public policy that serves neither the dignity of the person nor the ethical standing of the medical professional who must participate in prolonging death rather than sustaining life?
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( OTA Task 6 Contract 533-4935.0 10/15/85000501 -6 -2) To what extent do these issues have special significance for the elderly? As the population ages, there is a higher incidence of cancer and chron ic disease which may precipitate ventilatory failure. This creates increased costs due to long-tenn hospitalization in expensive ICU beds which may be exacerbated by the lack of reimbursement in some states for chronic care outside the hospital. If reimbursement is available for home care, this is a viable option. Where independent living support services are available, people can live in the conmunity (Task 4 Pfronmer, Laurie). Many acute diseases causing death and disability during the ea~ly and productive years of life are no longer problems, and chronic diseases particularly in the elderly population have become increasingly more prominent. These chronic diseases often require complex and expensive diagnostic technology to define them, but the medical interventions which are ava11nle serve primarily tvanaintain or preserve function. Respiratory and intensive care units have increased the survival of all patients with respiratory failure. However, the survival of those who require prolonged ventilator assistance is small in n1111ber and achieved only at great cost. Davis(4), however, stressed that patients with only lung disease had the lowest irnnediate, one year, and two year mortality, as well as the lowest charges per hospitalization compared with other patients 1n his institution on receiving similar ventilator support. Furthennore, Davis felt that since all survivors of the 301
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' OTA Task 6 10/15/85 000502 Contract 533-4935.0 -7 -critical episode (respiratory failure) have a 50/50 chance to live two more years, it is medically and ethically appropriate to continue to provide supportive care for these patients, if we are going to provide critical care for the seriously-ill .older adult population. In several studies on patients receiving mechanical ventilation, a sig nificant percentage were 60 years and older: Davis, et al (4) Mean age 66.7 Sukumalchantra, et al (10) Mean age 62 Moser, et al (9) Mean age 60.fi Kopacz and Moriarty-Wright (8) 271 over 65 Fischer and Prentice (5) 41% over 65 AART study (1) 341 over 65 In Campion et a1.,< 3 ) once patients were admitted to the ICU, the older they were, the greater th probability that they would be placed on mecha, al ventilution. Fvurteen perc~,t of the patie,,ts J:-i4 .. I~ of patients 75 and over admitted to ICU were intubated and mechanically ventilated during their course of treatment. Age of the person plays a critical role. Infants and childr~n usually have parents who care very much about them and are prepared to make financial sacrifices for them (although infants are usually born to young people with limited financial resources). Old people are particularly vulnerable because they are more likely to be alone, more
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' OTA Task 6 10/15/8500050~ Contract 533-4935.0 -8 -likely to be personally powerless, and more likely to have limited financial resourses. Of special significance to the elderly ventilator-assisted individual is the need for in-home service, such as personal care assistants (Task 4 Pfr011111er, Laurie). The older ventilator-assisted person usually cannot be cared for at home by his/her spouse as a child can be cared by his/her parent. The spouse will often have medical problems which limit their physical capabilities (i.e. arthritis, heart disease). In many instan ces, no innediate family is available to assist elderly persons on mechanical ventilators. As a result, there are fewer advocates for the use of ventilators by elderly as compared to advocates for the use of ( ventilators by children. 3) What issues can be settled by professional, community, or private sectors (without congressional actions)? Some ~ssues can be settled by professional, ~unmunity, or private sectors. They can be grouped under the following categories: continuum of care, funding policies, accessibility, economic incentives, standards of care, better services and equipment, "living wfll 11, and small-scale demonstration and research. A continuum of care for respiratory-dependent elderly can be developed by designating selected regional centers of expertise dedicated to this problem and by establishing a regional system to assure fully-integrated services in the connunity. This can both be accomplished regionally and integrated at the national level as shown in France (T~sk 5).
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.: OTA1TasK 6 1 o; b/ti6 Contract 533-4935.0 9 _o o o so 4 The professional, corm1unity. and private sectors' funding of the concepts of volunteerfsm and training could support Independent Living Centers which would assist the elderly ventilator-assisted person as they have post-polio and spinal cord injured consumers. Independent Living Centers, such as the Center for Independent Living in Berkeley, Ca 1i forn i a, offer a wide-range of services. such as peer-counse 11 i ng. attendant training. attendant referral. and independent living preparation.* Funding is not easily found to pay for essential caregiving, durable medical equipment, and home rennovation required by the ventilator assisted individual. Private third party payors have set precedent by reimbursing on an individual case basis what personnel and equipment are deemed necessary to properly support an elderly ventilator-dependent person (Task 4). It would be both cost-saving and safe if such payors would allow nor.~"cfes" ;nil personal care attendants to ~upi ', care of families and professionals. It would also be cost-effective to all sectors if existing building codes stressed accessibility and adaptability for all Americans (Task 4). Another factor in funding is that there presently exists no economic in centive for professional, conmunity, or private sectors to organize *Berkley Planning Associates, Susan Stoddard, Project Director. "Evalua tion Report on the State's Independent Living Center, Funded by AB20Y". Submitted to California Department of Rehabilitation, March 1980.
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( OTA Task 6 Contract 533-4935.0 1011s,asJ fJ tJ5o s-10 -support services for the ventilator-dependent person. These sectors generally look to Medicare to take the lead. It is recognized by all that comprehensi've reimbursement is required in full for those resourses necessary to adequately support an elderly ventilator-dependent person in a home setting or alternative environment. The consumer, professional, and lay connunfty must have input in setting standards for treatment and guidelines for care. There will be many exceptions, as each case must be handled individually; a "cookbook" approach is fnapproprfate. Those that actually deal and live with the care should detennine the standards based on their experience and fnsfghts. Ventilator standards of quality must be developed and used. Better respiratory equipment fs needed. What exists is often undependable, with many breakdowns that result fn life-threatening situations; only experiences from centers of expertise seem to have better results (Task 2 and 4 -Alba, Indhar). There are few consumer options to choose for a home ventilator. It would be cost-effective to all sectors ff there were more competition among home care services and medical equipment dealers. The "Living Will", being able to die with dignity, are issues the community and professionals must address. "When to pull the plug" must be established on an ethical, medical, and individual basis, or poli cies will be detennined by economic realities (Task 5).
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OTi Task 6 Contract 533-4935.0 10110/85 -11 000506 Nongovernmental sectors can raise such issues to public awareness. They can explore and experiment with alternatives for reimbursement and the provision of care, as the recent American experience with the hospice movement has shown (Task 4 Pfronmer, Laurie). They probably can provide some funding for small scale demonstrations and their evaluation. 4) What issues require congressional actions? Currently, individuals that have a potential for a full and satisfying life with the assistance of a ventilator find only a few limited options for care. Congress should bring together all parties involved with ventilator use issues and provide leadership in their resolution. A pri ority 1s for Congress to hold hearings and fund research to establish demonstration projects to determine how to best provide services for ventilator-dependent individuals. A normative approach must be taken to devise a continuum of care, and, at the same time, cost-out the different alternatives to determine the most cost-beneficial ones. Inmediately, Congress must begin by creating a new Medicare/Medicaid benefit that reimburses services provided to elderly ventilated people. At first glance, this may seem like an added cost measure. However, this could lower cost in the long run by reducing the number and duration of much more expensive hospital admissions which result from medical instability (Task 2). Title VII of the Rehabilitation Act of 1973 mandated Independent Living Centers. Congress should fund these centersto demonstrate cost-bene-
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( OTA Task 6 Contract 533.4935.0 10/15/85 000507 -12 -f1cia1 home care. Services for people with severe disabilities could be applied to the ventilator-dependent elderly. This could be one of many demonstrations showing that what would put in place for one population could serve others with related needs. Congress should consider a Federal program to establish regional medical centers that deal with special respiratory problems and prolonged mechanic~l ventilation (Task 5 -O'Donohue). These centers could be along the lines of the fonner polio centers of the 1501s or the current French system. Congress should also authorize the National Institute on Handicapped Research to award contracts for the development of less-expensive and more reliable portable ventilators. 5) Is it feasible to propose treatment guidelines for mechanical ventila tion? Treatment guidelines must be flexible enough to allow for individual choice (Ta\k 5). Guidelines are a tool to establish a standard of treatment throughout the country. They should include a description of when living at home will be successful or when other options may b~ more desireable. The American Thoracic Society has already suggested guidelines for physicians to use in prescribing respiratory equipment at home in an attempt to reduce unnecessary use of this equipment.* The *American Thoracic Society. Home Care of Equipment for Patients with Respiratory Disease. Amer. Rev. Resp. Dis. 115 (Suppl):893-895, 1977.
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( OTA Task 6 lU/, 5/85 -13 -Contract 533-4935.0 000508 American College of Chest Physicians has created an ad hoc task force to develop guidelines for ventilator care in the home and at alternate coanun1ty sites.* The establishment of treatment guidelines would assure that: a) treatment goals are detennined; b) all appropriate resources required to achieve the goals are identified; c) appropriate and competent health care personnel are made available; and d) a basis exists for the justification and documentation af needed support services and other longtenn considerations. Furthennore, standards of care would provide a general approach to diagnosis and management so that clinical profes sionals not familiar with care issues would have proper guidance. There is great debate that treatment guidelines.are necessary. There are concerns that treatment guidelines could become a euphomism for. "rationing health care". Some people feel once ethical and moral decision making is left to the legislative proct.~s v:a "trt. ... tment ~, lines", the very fabric of decision-making for the individual is lost. Others believe that they will be abused in the current litigation climate. *All members of the ACCP task force are contributors to this OTA Report. Guidelines are anticipated by early 1986.
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l OTA Task 6 Contract 533-4935.0 10/15/85 000509 14 -6) What aspects of mechanical ventilation and the issues it raises call for additional research? There are a number of areas in which research must be conducted: biomedical research concerning the conditions that make reliance on optimal mechanical ventilation necessary and appropriate, and those under which weaning is viable; successful weaning strategies, and the role of family and social support in this process; the relative advantages and disadvantages of medically, finan cially, and socially varying arrangements for the provision of care; the social impact on the patient and family of different institutional and conmunity arrangements for delivering health care; factors in the social infrastructure that seem to aid or to hinder successful home care; the impact on hospital staff. families, volunteers, or paid helpers of the task of caring for patients who often do not get well or whose health is likely to be seriously impaired despite good care; the meaning for patients. family, staff and others of the reliance on mechanical support; comparisons with data from situations involving renal dialysis or mechanical hearts. Since reliance is likely to grow, there is need to understand now the relationship that develops among patients and others and mechanical equipment. study of the impact of previous counselling and the use of role models by consumers; the development of simple, more reliable, easy to maintain, and less expensive home ventilators; and
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. OTA Task 6 Contract 533-4935.0 0/15/85 -15 000510 research on outcomes of long tem care. Although there have been some long-te!'III studies of mortality after discharge from ICU's, there are few describing long-term functioning following di~charge on mechanical ventilation. Studies on survival are medically oriented, and they do not consider quality of life issues. for the person nor his/her family. Few studies of survival compare persons on mechanical ventilation1w1th patients with similar degrees of impairment not on mechanical ventilation. Experience suggests that basic incidence and prevalence data are not even available on this population. In this regard, evaluation of other developed nation's programs would be useful ( 7) What is the potential for reducing the rates of lung disease and other ( conditions leading to ventilatory insufficiency and failure in elderly persons? What potential problems can be prevented? There are at least two approaches to these questions depending on the scope of J,reventative means that could be irr :1,er.:"d. If the scope of this study is limited to chronic ventilator-dependent persons, then prevention should be aimed at minimizing reinstftutfonal tzation. In order to prevent readmitting people to the hospital on a recurring basts, it ts suggested that a system of monitoring care fn the COIIIIIUn1ty be established. Such monitoring would include not only the operation of the equipment, but also the person's condition, and the home situation 1n which the person lives. Any change in one of those three areas may result in the need for readmission of such a person to a
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( OTA Task 6 Contract 533-4935.0 10/15/85 -16 -000511 tertiary care institution. On the other hand, if a proper monitoring system were fn place, then the justification for a support service would be identified in an objective and timely fashion, and care could be coordinated, quJlfty-assurance guaranteed, resulting in significant cost-savings as has been demonstrated in France (Task 5). If prevention is applied 9enerally, then environmental issues like air quality become important. Any means that lowers the incidence of lung disease could be called preventive. Accidents account for spinal cord injuries that leave persons in need of ventilation assistance, so safety become another preventive issue. Many diseases such as A.I.D.S. or polio will create the need for mechanical ventilation. Primary pre-. vention of disease must be fully implemented. The World Health Organi-zation notes the additionof 500,000 post-polio individuals to the world population every year; inmunfzation becomes a preventive means. There fs a large population of Latin Americans in the United States which nev~~ has receiv~a proper in111unization. Primary and secondary prevention are critical, and should not just be a response to acute intervention. Good health and nutrition will become even mre important as a preventive means because, in the next 50 years, it is estimated that the number of Americans 65 and over will more than double. The census bureau projects that this population will reach 65.9 million by the mid-2030's. Even with medical advances, a segment of the elderly population, especially those over 851 will have disabling diseases. Today about two out of three of all people with disa-.jJI
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( Contract 533-4935.0 -17 -bilities are elderly. Among these elderly are increasing numbers of people who will need to add ventilation to their lives. 8) What particular issues and problems should be priorities for public attention? 000512 This basic issue raised is one which society can solve by indicating strongly its desires relative to the allocation of resources. For instance, is it sensible that an industrial nation should allocate only lOS of its gross national product to health and human services? Is it sensible to ration health care to the elderly and chronically-ill? Is it appropriate n~t to reimburse hospitals for their expenses in caring for these persons? Society must decide the answers and deliver their answer~ to the responsible legislative bodies, who bear the ultimate responsibility to transfonn society's wishes into law. It appears that the present legislation is not understood by the vast majority of Medicare/Medicaid recipients. Major initiatives must be taken to create an infonned public opinion (Task 4). The public must understand that the Medicare system, as it is administered today, is by and large inefficient for both assuring quality of care and cost-savings. In order for the reimbursement system to survive the future, it must undergo a transformation. Revisions should include, but not be limited to, an examination of all current benefits along with cost-identification and detennination of outcomes. The public should also know the need for the creation of new benefits and the review of current eligibility requirements so that with new medical
PAGE 316
( ( Iii. OTA Task 6 Contract 533-4935.0 10/15/85 -18 000513 advances app.ropriate care will be given in the appropriate environment. As it stands today, there is a great incentive for patients to be admitted to a hospital in order to receive their benefits when it might be possible for those patients to avoid hospitalization. The .ventilator-assisted person represents more than a complex medical issue; their situation ~nvolves social problems whose solution will have major impact on health care and social policy. Thus, public attention should be directed to awareness of the needs of this patient population. Funding issues are a priority. Alternatives to hospital intensive care units should be found. Options should be available to this population: hospitals vs. home, extended care facilities, stepdown units, and rehabilitation and transitional care facilities. Regional care centers should be developed with expertise in dealing with this population. C011111Unity alternatives to home must be considered: congregate housing, respite care, and medical foster care. Issues of quality of life on the ventilator as opposed to weaning at all costs .should be addressed. The capabilities and productivity of an individual that is ventilator-assisted should be truthfully presented and erroneous sterotypes linking aging and death should be changed. Whenever lifesupport systems are involved, there will be need to encourage public discussion as to the circumstances under which society will support the allocation of resources for persons who will not recover, or under which there will be pressure to end the use of this equipment.* Editorial C011111ent: Town Hall" meetings such as California Health bec1s1ons Involving Citizens in Health Care Choices (Sister Corrine Bayley, CSJ) will be good models for other cOR111Unities to follow (Task 4). 3/j
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( OTA Task 6 Contract 533-4935.0 lo, 15/ 85 0 0 0 514 19 -Finally, public attention should focus on establishing a long-term ca~,.e system. This type of system is essential for quality of life to indi viduals who are disabled and/or elderly. Substantial savings in acute care costs could be realized by such system which could provide mechanical ventilation in a more timely and appropriate manner. 9) What existing problems may be amenable to public policy change? At the present time, given the low incidence and the low profile of the related problems, it is likely that all issues are amenable to change. Those most amenable for public policy change are suggested: 1) The ventilator-dependent consumer must function as a member of the team that detennines care. He/she should have access to peer counseling and role model direction. Programs could be established 1 ile the ~,;terns developp,i ~1lr polio at Rancho los Amigos a1.. Goldwater. 2) The current system of reimbursement should be adapted as ft applies to the chronically-ill, ventilator-dependent patient. A DRG exception should be provided to centers of expertise that have a proven track record of care given in a cost-efficient manner. Payments should include a variance for severity of illness; this currently does not exist. 3) A legal standing for the v1ng will" or similar initiative should receive national affirmation.
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OTA Task 6 Contract 533-4935.0 10/15/850 0 0515 -20 -4) A person should not have to be hospitalized in order to receive a benefit. but should only have to document needs. In this way, a ventilator could be used before an acute crisis and in a cost saving setting. 5) Hospitals should be adequately compensated for their cost to provide care for each patient, provided they maintain proper accountability. 6) Adequate payments should be provided for home care support per sonnel, particularly respiratory therapists, nurses, and personal care assistants who are required by ventilator-assisted persons at home. 7) There should be better provision of care for the chronic, ventila tor-dependent patient, similar to the hospice program currently ( allowable under Medicare payment systems. 8) Education and training of doctors, staff, family, and consumers, and other concerned persons in the use of technology and philosophy of independent living should be made available. This would be possible by establishing and stren~t~ening of Indepe"dent Livir1g Centers patterned after the Center for Independent Living, Berkeley, California; creating designated centers of expertise like at Goldwater and Bethesda Lutheran Medical Center; and creating documentation resource centers such as those operating in France. 9) A systems approach is necessary to coordinate all the available re sources from the private., public, voluntary, and governmental sec tors. The issues are too complex and the involved organizations too numerous to expect the spontaneous resolution of problems discussed in this report. Needs that can be addressed by such a system in-
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.. OTA Task 6 Contract 533-4935.0 -21 elude overa 11 care-monitoring outcome-detennination, qua 1i ty assurance, and cost-accountabi,ity. 000516 10) The need for public awareness and research to resolve unanswered questions raised in this report requires a designated body which should include professionals, consumers, and involved groups who are knowledgeable about the issues. Such a body could be responsible for detennining priorities, encouraging demonstrations, and evaluating research inititatives. 10) What are some of the public policy options? 1) The first option is to leave the system as it is. Let the issues percolate until they become a higher priority ("the ostrich approach"). 2) The second option is to leave the system as is, but add flexibility in reimbursement, more consumer involvement, and resolve ORG issues ("patch it"). 3) Tht. third ~~i'ln ir tC'I i aiate anc lt1c.1uate demonst ui. vu pruJ~cts that gradually affect and incremently c~ange the system to provide a more cost-effective continuum of services ("change it"). 4) A fourth option is to create a system providing a continuum of services that would deal with the issues of ventilator use in terms of long-term care as opposed to the present model of acute care (fix it"). 5) A final option would be a "Right to Breath" Law. Such a law would \ provide a c0111prehens1ve system for the ventilator-assisted indi vidual ("legislate it).
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( OTA Task 6 10/15/85 Contract 533.4935.0. -22 Q O 0517 REFERENCES 1. "The AART makes the 6 o'clock news." AART Times, 81 4, 28-311 1984. 2. Auchfncloss, J.H. and Gilbert, R. "Mechanical aid to ventilation in the home: use of-volume limited ventilator and leaking connections." Am. Rev. Resp. Dis., 108, 373-375, 1973. 3. Champion, E.W., Mulley, A.G., Goldstein, R.L., Barnett, 0., Thibault, G.E., .'~Me~ical intensive care for the elderly. 11 JAMA, 246, 18, 2052-2056, 1981. 4. Davis, H., Lefrak, S.S., Miller, D., Malt, S. "Prolonged mechanically assisted ventilation. JAMA, 243, 43-45, 1980. 5. Fischer, D.A. and Prentic, W.S., feasibility of home care for certain respiratory-dependent restrictive or obstructive lung disease patients." Chest; 82, 6, 739-743, 1982. 6. George, R.B., Baker, J.P., Constantine, H.P., Kanner, R.E., "Home use of equipment for patients with respiratory disease Arn. Rev. Resp. Dis., 115 (Suppl), 893-895, 1977. 7. "Health Car_. fo thl\ E,der~ .. "" in Final Re; ... :~ .. r. ~r.t-~981 Wn1te House Conference on Aging. Vol 1, 68-95, 1982. 8. Kopacz, M.A. and Moriarty-Wright, R., "Multidisciplinary approach for the patient on a home ventilator." Heart and Lung, 13, 3, 255-261, 1984. 9. Moser, K.M., Shibel, E.M., Beamon, A.J., "Acute respiratory failure in obstructive lung disease. Long-term survival after treatment in an in tensive care unit." JAMA, 225, 7, 705-707, 1973. 10. Sukumalchantra, Y., Dinakara, P., and Williams, M. "Prognosis of patients with chronic obstructive pulmonary disease after hospitalization for acutve ventilatory failure: a three year follow-up study." Am. Rev. Resp. Dis., 93, 215-222, 1966. 317
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