Ethics and the Care of Critically Ill Infants and Children

8/8/2019 Ethics and the Care of Critically Ill Infants and Children

1/6

1996;98;149-152PediatricsCommittee on Bioethics

Ethics and the Care of Critically Ill Infants and Children

http://www.pediatrics.orgthe World Wide Web at:

The online version of this article, along with updated information and services, is located on

Online ISSN: 1098-4275.Copyright 1996 by the American Academy of Pediatrics. All rights reserved. Print ISSN: 0031-4005.

American Academy of Pediatrics, 141 Northwest Point Boulevard, Elk Grove Village, Illinois, 60007.has been published continuously since 1948. PEDIATRICS is owned, published, and trademarked by thePEDIATRICS is the official journal of the American Academy of Pediatrics. A monthly publication, it

by on November 24, 2010www.pediatrics.orgDownloaded from
http://www.pediatrics.org/http://www.pediatrics.org/http://www.pediatrics.org/http://www.pediatrics.org/http://www.pediatrics.org/http://www.pediatrics.org/http://www.pediatrics.org/


2/6

E th ics an d th e C are o f C r itica lly I ll In fan ts and C h ild ren

PED IA TR IC S Vo l. 9 8 N o .1 Ju ly 1996 149

Comm ittee on B ioe th ic s

ABSTRACT . T he ab ility to p rov ide life sup p or t to illch ild ren w ho, no t long ago , w ou ld have d ied desp item ed icin e s b est e ffor ts cha lleng es p ed iatr ician s and fam -ilie s to address p rofound m ora l question s. O ur soc ie tyhas b een d iv ided ab ou t ex ten d ing the life o f som e pa -t ien ts, espec ia lly n ew born s and o ld er in fan ts w ith sev ered isab ilit ie s. T he Am erican A cadem y of P ed ia tr ic s (AA P)su pports ind iv id ualized decis ion m ak ing about l ife -sus -tam ing m ed ica l treatm en t fo r a ll ch ild ren , regard less o fag e . T hese d ecis ion s shou ld be jo in tly m ade by physi-c ian s and paren ts , un less good reasons requ ire invok ingestab lish ed ch ild protec tive serv ices to con travene paren -ta l au tho rity . A t th is t im e, resource a llocation (ra tion ing )d ec ision s abou t w h ich ch ild ren shou ld rece ive in ten siv ecare resources shou ld be m ade clear and exp licit in pub -lic po licy , rath er than be m ade at th e bed sid e .

S ince the adven t o f m eans fo r su ppo rting n ew -b orns w ith re sp ira to ry d istre ss , n eo na tal and p ed ia t-r id in ten sive ca re has he lped tens o f thou sands o fch ild ren su rv ive life -th rea ten ing illn es s and th e rig -o rs o f m a jo r su rg ica l in te rv en tion . F or m o re than adecade , how eve r , m any re spo nsib le fo r the h ea lthca re o f ch ild ren have d eb ated the appropria ten es s o fapp ly ing life -su stain ing m ed ica l techn o log y (LSM T)to a ll c r itica lly ill ch ild ren . (T he term L SM T hereapp lie s to m eth ods o f su ppo rtin g life typ ica lly ap -p lied in in ten sive ca re u n its , such as the use o f y en -tila to rs an d m echan ica l o r p ha rm aco log ic su ppo rt o fc ircu la tion . T he te rm critica lly ill he re refe rs to d is-o rde rs requ ir ing su ch LSM T . B o th term s de fy p rec isede fin ition .) A s a recen t A A P po licy sta tem en t1 onfo rgo in g LSM T note s, th e v a lu e o f such the rapy m aybe un ce rtain , e sp ec ia lly w hen firs t co nsid ered . G oodm ed ica l p ractice m ay favo r in itia tion o f L SM T untilc la rif ica tion o f th e clin ica l s itua tion and re levan t e th -ica l va lu es can o ccur . M uch d iscus sion has focusedon h ig h ly v isib le se lectiv e n on treatm en t o f h an d i-capp ed in fan ts2 and the re sp onses o f the fede ralg ove rnm en t, n ow know n co llo qu ia lly as the B abyD oe ru le s .3 4 In the la st few yea rs , c lin ic ians and thep ub lic also have becom e inc reasing ly co nce rnedab ou t the h ig h co sts , in te rm s o f m on ey , tim e , andp sycho soc ia l conseq uences, o f n eo na ta l and p ed iatr icin ten sive care .

NEW BORNS AND INFANT SM uch con tro ve rsy h as su rrou nd ed the trea tm en t

o f new borns and o ld er in fan ts w ith read ily id en tifi-

The re com m en datio ns in th is sta tem ent do no t ind ic ate an exclu siv e co urseof tre atm ent o r serv e a s a s tand ard o f m edical c are . V ariatio ns , tak in g in toaccoun t indiv id ual circum stances, m ay be appropr iate.PED IA TR IC S (ISSN 0031 4005).C opyrigh t 1 996 by th e Am erican A cad -em y of Ped ia trics .

ab le m ed ical p ro b lem s, inc lud ing gene tic d iso rd ers ,m a lfo rm atio ns and de fo rm atio ns, and , to som e ex-ten t, ex trem e p rem a tu rity and /o r low bir th w e igh t.S c ien tific und erstand in g and im prov ed tech no lo gyhave pe rm itted reduc tion s in m orta lity fo r in fan tsaffec ted by an en la rg ing lis t o f cond itions. A be tte rap p rec ia tion o f w ha t can be d one to he lp m any infan ts w ith d isab ilitie s and soc ial con side ra tion s o ffa irness have led to the ap p licatio n o f life -sav ingm ed ica l in te rv en tion s to c ritic a lly ill n ew bo rn s andin fan ts w ho , n o t lo ng ago , phy sician s m ig h t no t havetrea ted v igo rou sly . C on ce rn th at som e in fan ts , egthose w ith D ow n sy ndrom e and gastro in testin al ob -stru ctio n , rece ived in su ffic ien t trea tm en t led to thefede ral leg is la tion (th e 1 984 C hild A bu se Am end-m en ts) and regu latio ns th at sou gh t to ensu re app ro -pn ia te m ed ica l the rapy fo r a ll d isab led in fan ts .

L ook ing back , th e m easu re s to p reven t un due d is-cr im in atio n aga inst d isab led in fan ts seem to haveprod uced at lea st tw o un in ten ded con sequences.F irs t, it seem s tha t m any pe rson s in the hea lth carean d ch ild adv ocacy p ro fe ssio ns, alo ng w ith the gen-era l p ub lic , m isun de rstand the v ariou s fede ral ando th er lega l req u irem en ts reg a rd in g treatm en t d ec i-s ion s fo r in fan ts w ith c ritic al illne sse s .7 Thu s, m is-co ncep tion s ab ou t th e B aby D oe ru le s m ay havebecom e de fac to benchm arks fo r treatm en t dec is ionsabou t cr itic ally ill n ew born s and o lde r in fan ts . S ec -on d , a tten tion con cen tra ted o n sav ing the live s oin fan ts , som e w ith pe rm anen t, s ev ere d isab ilitie s o rneu rod eg en era tive d iso rd ers , ha s ham pered su ff i-c ien t atten tio n to the po ssib le o ve ru se o f LSM T .

W ith reg ard to th e f irs t po in t, th e ac tu al lang uageof th e 1 984 C hild A bu se Am endm en ts m ay pe rm itm o re ph ysic ian d iscre tion than som e rea lize . A l-tho ugh the law m anda te s p ro v ision of L SM T to m os tse rio usly ill in fan ts , it does p rov ide fo r excep tion s inthe case o f pe rm anen t u nconsc io usness , fu tile trea tm en t, and v irtu ally fu tile th erapy th at im -po ses exces sive b urd ens on the in fan t. P h ysic ians,w ith p aren ta l ag reem en t, m ay even fo rgo g iv in g h y-d ra tion and nu tr ition w hen they th ink th ese m ea -su re s a re n o t approp ria te . (Q uo ted w ord s an dph ra se s com e d irectly from th e law .3 )

W ith reg ard to th e seco nd po in t, po ssib le o ve ru seo f L SM T , seve ral boo k-len g th stud ies ,8 1 o ne pe r-son a l accoun t from paren ts ,12 and recen t e ssays byp io neering neona to lo g ists1 3 14 have sugg ested th atm ode rn new bo rn ca re m ay , a t tim es, co nstitu te o ve r-trea tm en t. A rticle s fo r th e g en e ra l pub lic have com -m unica ted th e sam e m essage .5 -17 A s prev iouslyn o ted , a fte r the C h ild A buse Am endm en ts o f 19 84 ,tw o reports o f a su rv ey o f neon ato log ists5 6 in d icated

http://www.pediatrics.org/http://www.pediatrics.org/http://www.pediatrics.org/http://www.pediatrics.org/


3/6

150 ETH IC S AND CARE OF CR IT ICA LLY ILL IN FAN TS AND CH ILD REN

tha t m any w ho specia lize in th e ca re o f sick new -borns b elieve they a re lega lly cons tra ined to p ro v ideLSM T to in fan ts , even w hen the ir m ed ical jud gm en tsan d the v iew s o f the p a ren ts concur tha t w ith ho ld ingtrea tm en t is p refe rab le .

A lthou gh m any w ou ld like to have sim p ly in ter-p reted an d easily app lied substan tiv e stand ards fo rclin ica l dec is ions ab ou t c ritic a lly ill in fan ts , m ed ica lan d m o ra l com p lex ity m ak e such ru le s im pruden t.S cien tific unce rta in ty reg ard in g o u tcom e con tinuesin the n eo na ta l in tens iv e ca re un it. S om e ve ry tin yin fan ts w ith docum en ted brain insu lts , such as thosetha t m ay occur w ith pe riven tricu lar h em orrhag e,de fy ex pecta tion s and su rv ive w ith no ap pa ren t d in -ica l de f icits . A v a ilab le ev idence , how eve r , con tin uesto ind ica te th at the d ec reased m ortality b rou gh tab ou t by neon ata l in tensive care h as b een accom pa-n ied by in creased m o rb id ity , ie , s er ious m en tal an dphy sica l lim ita tions am ong su rv ivo rs tha t im po seburdens on a ffec ted ch ild ren and the ir fam ilies .1 8 1 9These facto rs also p lay leg itim a te ro le s in dec is ionmak ing .20 21

A few w ell-pu b lic ized cases in th e ea rly 198 0s ledsom e to conc lu de tha t p hysic ians and pa ren ts com -m on ly d en ied b en efic ial trea tm en t to im periled n ew -borns . H ow eve r , n o re liab le ev idence tha t dec is ion sen dange ring ch ild ren have b een w idesp read ex ists .M os t ca se s o f le tha l n on treatm en t seem to h av e in -vo lv ed in fan ts w ith tn isom y 21 an d m ye lom en ing o-ce le .2 224 H ow ev er , by the early 198 0s p ro fe ssion aland p ub lic v iew s ab ou t in fan ts w ith D ow n sy n-d rom e and sp ina b if ida had gene rally sh if ted to fa-vo r trea tm en t.25 Th is v iew is su ppo rted b y re su ltsfrom a survey of p ed iatr ic ian s d one in M assachusettsin the m id -1 980 s.2 4

Th e AAP supp orts pa ren tal inv o lvem en t in d ec i-s io ns ab ou t im p eriled in fan ts from th e ea rliest p os-sib le m om en t. O b ste tric ians and p ed ia tric ians needto in fo rm and counse l p aren ts ab ou t av ailab le op -tion s w h en prena tal d iagno stic p ro cedu re s iden tifyd iso rde rs in fetu se s . W om en m ay leg itim a te ly decid eabo u t the trea tm en t they an d the ir fe tu se s rece iv e.26 2 7O nce pa rtu ritio n occu rs , pa ren ts con tinue to have av ital ro le in d ec is io n m ak ing unde r the p re sum ptiontha t they accep t re sp onsib ility fo r nu rtu r ing the in -fan t and prov id ing reaso nab le ca re.28

T he AAP be lieves th at p aren ts an d physic ianssho u ld m ake reaso ned decis ions toge th er ab ou t cn it-ic ally ill in fan ts using the p rin cip les o f in fo rm edpa ren tal pe rm ission recen tly ar ticu la ted by theAAP . 29 Such d ec is ion s shou ld co nsid er the bene fitsand bu rden s o f trea tm en t a lte rn ativ es . P h ysic ianssho u ld rem em ber th at m any pa ren ts w an t a stro ngro le in these dec is ion s#{176 } and tha t pa ren ts m ay bringva lues to th e p rocess th at d iffer sha rp ly from those o fthe p hys ician . In ra re in stances , a s requ ired b y lawand so und eth ica l s tand ards, it m ay b e n ecessa ry toinvo ke estab lish ed ch ild p ro tec tive m echan ism s ifpa ren ts w ish to fo rg o L SM T , phy sician s d is ag ree ,an d the p artie s canno t reso lve th eir d iffe ren ces w ithhe lp from sub spec ialis ts , e th ic s co nsu ltan ts , o r e th ic scommi t t ee s .

CH ILDREN BEYOND IN FANCYA s w ith in fan ts , tw o b as ic q uestion s a r ise in the

ca re o f ch ild ren beyond the firs t y ea r : W hich v alu esand w hose au tho rity oug h t to go ve rn in m ed ica ltrea tm en t dec is ion s ab ou t the c r itica lly ill? P ub lishedcourt ca se s ind ica te tha t pa ren ts h av e been p e rm ittedto exe rcise b road d isc re tion w hen ac tin g on th eirch ild ren s b eh a lf,313 6 even w hen court-ap po in tedgu ard ians ad litem or o the r coun se l opp osed thpa ren tal ch o ice.37 39 L aw s in som e sta tes p erm it p ar-en ts to ex ecu te ad vance d irec tive s o n beha lf o f m i-no rs (C ho ice an d D yin g . S ta te law s rega rd ing end-o f-life d ec is io n m ak in g fo r m inors . N ew Yo rk , N Y :C ho ice and D ying ; S ep tem ber 199 5 :1 -2 ) .#{1 76} In add i-tion to acco rd ing du e re sp ec t to the b elie fs , fee lings,and needs o f th e fam ily as exp re ssed by pa ren ts , ach ild ren ge t o ld e r an d acq u ire cog n itive sk ill, ex pe -n ience , an d em otion al m atu rity , the ir ind iv idua lv iew s dese rv e care fu l co nsid era tion . S ensitiv e c lin i-c ian s and p aren ts ack now ledg ed th is in the p ro fe s-s ion al lite ra tu re as lon g as 20 yea rs ago .41

In th e realm of ped iatr ic c ritic a l care , the N o rthAm erican litera tu re p rov ides spa rse ev idence o f sy s-tem a tic app ro ach es to lim itin g LSM T .42 43 Th e ped i-a tric in tens ive care u n it, how eve r , un like th e neo na -ta l in ten sive ca re u n it, ha s n o t b een the fo cu sbu reauc ra tic o r po litica l deba te and ac tio n . P ed ia tricin tensiv is ts an d th eir co lleagu es an d con su ltan ts ie th ic s have tended to m ake dec is ion s abou t d isco n-tinu in g L SM T sim ilar to the w ay clin icians , lovedon es, e th ic is ts , and the courts m ake such dec is ion sfo r in com peten t adu lt pa tien ts . 45

RESOURCE ALLOCAT IO N AND DEC IS IO N S TOL IM IT LSM T

R ecen tly , conce rn s ab ou t the h igh cost o f cr itic alca re h av e led to a ttem pts to m anage critica l ca rere sou rces th rou gh the u se o f q uan tita tive ind ica to rso f p rog nos is .5 1 Som e phys icians , adm in istra to rs ,an d p lann ers w ou ld lik e to use in c rea sing ly accu ra tes tatis tic a l p red ic to rs o f ou tcom e to exc lud e p atien tsfrom receiv ing in tensive care se rv ice s . Ind eed , p op-u la tio n -based m ath em atica l too ls m ay p ro ve h elp fu lin eva lua ting the e ffec tiven ess o f v ariou s in tenv en -tio ns, in com paring ou tcom es of sim ilar trea tm en tsu sed a t d iffe ren t s ite s , and in in fo rm ing pa ren tsth e p rob ab ility o f the o u tcom e of trea tm en t. S uchstu d ie s , h ow ev e r, have an im portan t inhe ren t lim i-ta tion -the ir re su lts ap p ly to g rou ps o f pa tien ts , n oin d iv id ua ls . In th e ab sence o f p erfec t o u tcom e p re -d ictio n (10 0% su rv iv al o r death , based o n expe rien cew ith large n um bers o f pa tien ts), s tatis tic a l ind ica to rscanno t te ll clin icians w hich pa rticu lar pa tien t w ill d ieo r liv e (an d w ith w h at re sidu a l p ro b lem s) . M oreo ve r,even o ve rw he lm in g odd s o f success o r failu re o ftrea tm en t can no t take in to accoun t th e com p lex va l-u es tha t ind iv idu als , inc lud ing pa tien ts , fam ily m em -b e rs , phy sicians , an d o th e r h ea lth care p rov ide rs ,b rin g to a trea tm en t d ec is io n . T he re fo re , the A APopposes the u se o f these fo rm u las a s th e p rinc ipa lde te rm inan ts o f w he the r ind iv idua l pa tien ts rece ivein tensiv e care .

Th e co n trove rsy ov er the u sefu ln es s o f c ritic a l care

http://www.pediatrics.org/http://www.pediatrics.org/http://www.pediatrics.org/http://www.pediatrics.org/http://www.pediatrics.org/


4/6

AMERICAN ACADEMY OF PED IATRICS 15 1

resources has been most po ignantly highlighted bypublic debates about futile medical tneatment.5 256 Inthese discussions, physic ians and o ther care g iv ershave demonstrated concern that medical resourcesare be ing used inappropriate ly and that continuedtreatment v io lates deeply he ld be lie fs about whatproperly constitutes professional ac tiv itie s. O thersfee l that profess ional objec tions to so-called futiletreatment masks prejudices about those who are dis-abled, w ho come from disadvantag ed soc ial g roups,o r w ho are dying .

The AAP thinks that judgments about w hich diag-nostic categories of patients should rece ive or bedenied intens ive care based on considerations o f re -source use are so cial po licy deliberations and shouldbe made after considerable public discussion, no t adhoc at the bedside .

CONCLUS I ONSOur soc ie ty has reached a consensus that some

critically ill infants prev iously denied treatmentshould rece ive advanced medical and surg ical care.A large majo rity o f physic ians and other personsagree that most infants w ith D ow n syndrome w ithgastro intestinal obstruction and most infants w ithmyelomeningocele should hav e surgery and othertreatment they need.

There is le ss agreement, how ever, about howmuch treatment to prov ide other critically ill in-fants and children. M edical and public controversystill rag es about the appropriate lim its, if any , toplace on the treatment of extremely low birthw eight and premature infants, about infants w ithhypoplastic le ft heart syndrome,57 about childrenw ith chromosomal abnormalitie s w ith known verylim ited life spans, about infants w ith complex con-genital abnormalitie s, and about children in thefinal stag es o f terminal cancer o r o ther fatalchronic disorders. Many think that law s , regula-tions, and government polic ie s have unduly con-strained parents and phys icians from exerc is ingreasonable judgments about w hether to fo rgoLSMT.

A judicial and leg is lativ e consensus has dev elopedthat the values o f patients, rather than tho se o f phy-sic ians o r po licy makers , should determine the extentof the application o f LSMT.58 A s no ted, some stateshave empowered proxy decision makers to executeadvance directiv es regarding LSMT on behalf o f m i-no rs. Leg islation and regulation about disabled in-fants conflic t w ith the legal trends governing allo ther patients. In the absence o f compelling ev idencethat infants require spec ial leg al protec tion, the AAPthinks that parents of newborns should have thesame dec ision-making autho rity they have w itho lder children.

Limited resources may require equitable lim its onmedical treatment. Such restric tions require carefulconsideration of the ir soc ial, cultural, and economicconsequences and deserve to be made at a publicpo licy lev e l, not at the beds ide .

R E C OMM E N D A T I O N S1 . D ecis ions about critical care fo r new borns , infants , and

children should be made sim ilarly and w ith informedparental perm iss io n.

2. Phys icians should recommend the prov ision o r fo rgo ingof critical care services based on the pro jected benefitsand burdens o f treatment, recogniz ing that parents mayperce iv e and value these benef its and burdens differ-ently from medical profes sionals.

3 . D ecis ions to fo rgo critical care servic es on the groundsof resource lim itations, generally speaking, are no t din-ical dec isions , and phys icians sho uld avo id such bed-s ide ratio ning .How ever, because many in the American public

think that our health care system spends excessive lyon critical care serv ices , soc ie ty should engage inthoroughgo ing debate about the economic , cultural,re lig ious, so cial, and moral consequences of impos-ing lim its on w hich patients should rece ive intensiv ecare.

COMMITTEE ON BIOETHICS , 1995TO 1996Joe l E. Frader, MD , ChairpersonLucy S . Cram , MDKathryn L. Moseley , MDRobert M . N elson, MDIan H. Porter, MDFelipe E. V izcarrondo, MDLIA IS ON REPRESEN TA TIV ESWatson A . B ow es, MD

American Co lleg e of Obste tric ians andGyneco log is t s

A lessandra Kazura, MDAmerican A cademy of Child and A do lescentPsychiatry

Ernes t Krug , MDAmerican B oard of Pediatric s

SECTION LIA IsoNDonna A . Caniano , MD

Section on SurgeryLEGAL CONSULTANTNancy M . P. K ing

R E F E R E N C E S1 . Am erican A cademy of Pediatrics , Committe e on B ioe thics . Guideline s

on fo rgo ing life-sustaining medical treatment. Pedia tr ic s . 1994;93:532-536

2 . W e ir RF . S ele ctiv e N o ntrea tm en t o fH an dica pp td N ew bo rn s: M ora l D ilem m asin N eon a ta l M edic ine. New York: Ox ford U niv ers ity Press; 1 992

3 . U S Child A buse Prote ction and Treatment Am endments o f 1 984 . PubNo . 98 -457

4 . Child abuse and negle ct prevention and treatment program: final rule.50 F ede ra l R eg iste r 14878-14901

5 . Kopelman LM, Irons TG, Kopelman AE. N eonatolo gis ts judge theBaby D oe regulations. N E ng I J Med. 1988;318:677-683

6 . Kopelman LM , Kopelm an A E, Irons TG. N eo nato log is ts , pediatricians,and the Supreme Court criticiz e the B aby D oe regulations. In: CaplanAL, B lank RH, Merrick JC, eds . o m pe lled C o m pa ss ion : G ove rn m ent Jo-tcrv eiition in the T rea tm en t o f C ritic a lly J lle wb o rn s . To tow a, NJ: HumanaPre ss; 1 99 2:2 37 -2 66

7 . Frader J. Rev iew o f compelled compass ion. N E ngI I M e d . 1992;327:8248 . Guillem in JH, Holm strom LL.ixed B le ss ings: In ten siv e C are fo r N ew -

borns. New York: Oxford Univers ity Press; 19 869 . Fro hock FM . Sp ec ia l C are: M edica l D ec is ions a t the B eg in n ing o f L ife .

Chicago , IL: U nive rsity o f Chic ago Press; 1 9861 0 . B osk CL. A ll G od s M ista kes : G ene tic C ou nselin g in a P ed ia tr ic H osp ita l.

Chicago , IL: U nive rs ity o f Chic ago Press ;99 21 1 . A nspach RR. Dec id ing W h o L iv es: F a te fu l C ho ice s in the In tens iv e-C are

Nurse ry . Berkeley , CA : U niv ers ity o f California Press; 1 993

http://www.pediatrics.org/http://www.pediatrics.org/http://www.pediatrics.org/http://www.pediatrics.org/


5/6

152 ETH IC S AND CARE O F C RIT IC AL LY IL L IN FANTS AND CH I LDREN

12 . S tinson R , S tinson P .he Lon g D y ing o fB a by A nd rew . B os ton , M A: L ittle ,B row n & Co ; 1992

13 . S ilve rm an A . O vertrea tm ent o f n eonates? A pe rsonal retrosp ective .Pedia tr ic s . 1992 ;90 :971-976

14 . S tahim an M T. E thic al issu es in the nursery : pr iori ties versus lim its.I Pedia tr . 1 9 9 0 ; 1 1 6 : 1 6 7 - 1 7 0

15 . K ola ta G . Pa ren ts of tin y infants fin d care cho ices are not th eirs.ewY ork T im es. Sep tem be r 30, 1991:A1

16 . B rodyjE . A qua lity of life d ete rm ined by a b aby s s ize.e w Yo rk T im es.O ctobe r 1 , 1991:A1

17 . Q uindlen A . C rim es against th e sm alles t o f ch ild ren . N ew Y ork T im e s.Janu ary 2 9 , 1 992 :A 21

18 . P ane th N , S tark R I. C erebra l pa lsy and m enta l re tard atio n in relat ion toin d ic ato rs o f perin ata l asphyxia. Am I O bste t G yn eco l. 1983;147:960-96619 . B lank RH . R atio nin g m edic ine in the n eon ata l in tensive care unit

(N ICU ). In : C aplan A L , B lank RH , M errick JC , eds.ompelledCompass ion: Go v e rn me n t I n te rv en t ion in the T rea tm en t o f C rit ica lly I ll N ew -barns. To tow a, N J: Humana P ress; 1992:9 7-103

20. S trong C . The neonato lo gis ts du ty to pa tien t and pa ren ts.ast ing s C e n tR e p . 1 9 8 4 ; 1 4 : 1 0 - 1 6

21. H a rdw ig J.Wha t about th e fam ily? H a stin gs C en t R ep . 1990;20:5- .1022. Lanto sJ. B aby D oefive years late r: im p lica tio ns fo r ch ild h ea lth . Engl

I M e d . 1987317:444-44723. Todre s ID , K rane D , ow ell M C , Sh annon DC . P ed ia tric ian s a ttitu des

affe cting decis ion m aking in d efective new bo rns . Pedia tr ic s . 1977;60:197-201

24. Todre s ID , G u illem an J,G rod in M A , Ba tten D . L ife-savin g the rapy fornew bo rns : a que stio nn aire surv ey in the state o f M assachusetts . Ped ia t-r ic s . 1988;81:643-649

25. Caplan AL . H a rd ca ses m ake b ad law : th e legacy of the Baby D oecon tro versy . In : C aplan AL , B lank RH , M errick JC , ed s.ompelledCompass ion: G ove rnm en t In te rve n tion in th erea tm en t o f C r itic a lly Ill N ew -borns. Totow a, N J: Hum ana Pre ss; 1992:105 -122

26. Board of T ru ste es, Am erican M edica l A sso cia tion . L ega l in te rv en tion sdur ing pr egnancy . J A M A . 1990;264:2663-2670

27. Comm ittee on E thic s, Am erican C ollege o f O bstetrician s and Gynecol-ogists. P a tie n t C ho ice: M atern a l-F eta l C on fl ic t. W ash ing ton , DC : Am eric anCollege o f O bste tric ian s an d Gyn eco lo g ists; 1987 . A COG Commit te eopinio n 55

28 . B o we n v A m er ican H osp ita l A ssocia tion , 106 S C t 2101 (1986 )29 . C omm ittee on B ioe th ic s, A m e rican A cadem y of P ed ia trics . In fo rm ed

consent, pa ren tal p erm iss ion , and assen t in ped iatric p ractice . Ped ia trics.1 9 9 5 ; 9 5 : 3 1 4 - 3 1 7

30. H arr ison H . T he p rin cip les fo r fam ily -centered neona tal ca re.ed ia tr ic s .199392 :M3 -650

3 1 . In re PVW, 4 24 S 2d 1 0 1 5 ( L a 1 98 2 )32 . In re dru m , 580 NE2d 876 (O hio Prob ate C t 1991 )33 . In re La w ra nc e , 579 NE 2d633 (Ind 1991 )34 . N e w m a r k V Wi l l i a ms , 588 A2d 1108 (D el 1991 )35 . In re R o seb ush , 491 NW 2d 633 (M ich App 1992)36 . In re B a by K , 16 F3d 590 (4 th C ir 1994)

37 . In re C A , 603 NE2d I 1 71 (Ill A pp 1992 )38 . G u ard ia nsh ip o f D o e, 583 NE2d 126 3 (M ass 1992)39 . C a re an d P ro tec tion o f B eth ,58 7 N E2d 1 377 (M ass 1992 )40 . Jefferso n 1$ , W hite BC , LouisVT , Brody BA , K ing DD , Rober ts CE . U se

of th e N atural D eath A ct in p ediatric patien ts.C rit C are M ed . 1991;19:901-905

41 . S chow alte r J, F erh olt J, M ann N . T he ado lescen t p atien ts d ecisio n td ie. Pedia tr ic s . 19 73 ;5 1 :9 7-103

42 . Lan tos JD , B erg er A C , Zuck er AR . D o-not- resusc itate ord ers in a chil-drens h osp ita l. C r it C are M ed . 1 99 3; 21 :5 2-5 5

43 . L eik in S . A pro posal co nce rn ing d ec isio ns to fo rgo life-sus tain in g trea t-m ent for young p eop le. J Ped ia tr. 1 98 9; 1 1 5: 17 -2 2

44 . F rad erJ. E th ics in pedia tric in ten siv e ca re. In : F uhrm an BP , Z immerm anJJ , eds . P e d ia tric C rit ica l C a re . St Lou is, MO : M osby -Y ear B ook, Inc ;1992:7-15

45 . G lover J J, H olb rook PR . E th ica l con sid era tion s. In : H olb rook PR , ed .Te xtb ook o f P ed ia tr ic C r itic a l C a re .Philade lph ia, PA : W B Saunde rs Co ;1993:1124-1130

46 . K naus W A , W agner D P, Lynn J. Short-term m ortali ty predic tion s fo rcri tica lly ill ho sp ital ized adults: sc ience and eth ics .c ienc e . 1991;254:389-394

47 . K naus W A , W agn er DP , D rape r EA , et al. T he A PACHE III p rog nos ticsy stem : risk predictio n o f hospital m orta lity fo r crit ica lly ill h osp ita lizedadults. Ches t . 1991;100:1619-1636

48 . P ollack MM , Ruttim an UE , G etson PR . Pediatric risk of m ortali ty(PR ISM ) score . Cri t C ar e M ed . 1988;16:1110-1116

49 . P ollack MM , G etson PR . P edia tric crit ical care cos t conta inm ent: com -b ined actuarial and clin ica l program . C rit C are M ed . 1991;19:12-20

50 . T ysonJ, W rig ht E , M a lloy M , W right L . How p red ictable is the ou tcom eand care of v entilated ex trem e low b irth w e igh t (E LBW


6/6

1996;98;149-152PediatricsCommittee on Bioethics

Ethics and the Care of Critically Ill Infants and Children

& ServicesUpdated Information

http://www.pediatrics.orgincluding high-resolution figures, can be found at:

Citationshttp://www.pediatrics.org#otherarticles

This article has been cited by 27 HighWire-hosted articles:

Permissions & Licensing

http://www.pediatrics.org/misc/Permissions.shtmlits entirety can be found online at:Information about reproducing this article in parts (figures, tables) or in

Reprintshttp://www.pediatrics.org/misc/reprints.shtml

Information about ordering reprints can be found online:

http://www.pediatrics.org/http://www.pediatrics.org/http://www.pediatrics.org/#otherarticleshttp://www.pediatrics.org/#otherarticleshttp://www.pediatrics.org/#otherarticleshttp://www.pediatrics.org/misc/Permissions.shtmlhttp://www.pediatrics.org/misc/Permissions.shtmlhttp://www.pediatrics.org/misc/Permissions.shtmlhttp://www.pediatrics.org/misc/reprints.shtmlhttp://www.pediatrics.org/misc/reprints.shtmlhttp://www.pediatrics.org/misc/reprints.shtmlhttp://www.pediatrics.org/http://www.pediatrics.org/http://www.pediatrics.org/http://www.pediatrics.org/misc/reprints.shtmlhttp://www.pediatrics.org/misc/Permissions.shtmlhttp://www.pediatrics.org/#otherarticleshttp://www.pediatrics.org/

Documents

Ethics and the Care of Critically Ill Infants and Children