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com/reporting/2010/08/02/100802fa_fact_gawande Acesso em 12/05/2011 1

ANNAL !" #$%&'&N$ LETTING GO What should medicine do when it cant save your life? (y At)* +awande A,+, - 2. 2010 / Modern medicine is good at staving off death with aggressive interventionsand bad at nowing when to foc!s" instead" on im#roving the da$s that termina% #atients have %eft& ara -homas #onopo*i was pregnant with her first chi*d when her doctors *earned that she was going to die. &t started with a co)gh and a pain in her (ack. -hen a chest 01ray showed that her *eft *)ng had co**apsed. and her chest was fi**ed with f*)id. A samp*e of the f*)id was drawn off with a *ong need*e and sent for testing. &nstead of an infection. as e2eryone had e3pected. it was *)ng cancer. and it had a*ready spread to the *ining of her chest. 4er pregnancy was thirty1nine weeks a*ong. and the o(stetrician who had ordered the test (roke the news to her as she sat with her h)s(and and her parents. -he o(stetrician didn5t get into the prognosis6she wo)*d (ring in an onco*ogist for that6()t ara was st)nned. 4er mother. who had *ost her (est friend to *)ng cancer. (egan crying. -he doctors wanted to start treatment right away. and that meant ind)cing *a(or to get the (a(y o)t. "or the moment. tho)gh. ara and her h)s(and. 7ich. sat (y themse*2es on a 8)iet terrace off the *a(or f*oor. &t was a warm #onday in 9)ne. 200:. he took 7ich5s hands. and they tried to a(sor( what they had heard. #onopo*i was thirty1fo)r. he had ne2er smoked. or *i2ed with anyone who had. he e3ercised. he ate we**. -he diagnosis was (ewi*dering. ;-his is going to (e !.<..= 7ich to*d her. ;>e5re going to work thro)gh this. &t5s going to (e hard. yes. ?)t we5** fig)re it o)t. >e can find the right treatment.= "or the moment. tho)gh. they had a (a(y to think a(o)t. ; o ara and & *ooked at each other.= 7ich reca**ed. ;and we said. @>e don5t ha2e cancer on -)esday. &t5s a cancer1free day. >e5re ha2ing a (a(y. &t5s e3citing. And we5re going to enAoy o)r (a(y.5 = !n -)esday. at 8:55 B.#.. Ci2ian #onopo*i. se2en po)nds nine o)nces. was (orn. he had wa2y (rown hair. *ike her mom. and she was perfect*y hea*thy. -he ne3t day. ara )nderwent (*ood tests and (ody scans. %r. Ba)* #arco)3. an onco*ogist. met with her and her fami*y to disc)ss the findings. 4e e3p*ained that she had a non1sma** ce** *)ng cancer that had started in her *eft *)ng. Nothing she had done had (ro)ght this on. #ore than fifteen per cent of *)ng cancers6more than peop*e rea*iDe6occ)r in non1smokers. 4ers was ad2anced. ha2ing metastasiDed to m)*tip*e *ymph nodes in her chest and its *ining. -he cancer was inopera(*e. ?)t there were chemotherapy options. nota(*y a re*ati2e*y new dr)g ca**ed -arce2a. which targets a gene m)tation common*y fo)nd in *)ng cancers of fema*e non1smokers. $ighty1fi2e per cent respond to this dr)g. and. #arco)3 said. ;some of these responses can (e *ong1term.= >ords *ike ;respond= and ;*ong1term= pro2ide a reass)ring g*oss on a dire rea*ity. -here is no c)re for *)ng cancer at this stage. $2en with chemotherapy. the median s)r2i2a* is a(o)t a year. ?)t it seemed harsh and point*ess to confront ara and 7ich with this now. Ci2ian was in a (assinet (y the (ed. -hey were working hard to (e optimistic. As ara and 7ich *ater to*d the Acesso em 12/05/2011 2

socia* worker who was sent to see them. they did not want to foc)s on s)r2i2a* statistics. -hey wanted to foc)s on ;aggressi2e*y managing= this diagnosis. ara was started on the -arce2a. which prod)ced an itchy. acne1*ike facia* rash and n)m(ing tiredness. he a*so )nderwent a s)rgica* proced)re to drain the f*)id aro)nd her *)ngE when the f*)id kept coming (ack. a thoracic s)rgeon e2ent)a**y p*aced a sma**. permanent t)(e in her chest. which she co)*d drain whene2er f*)id acc)m)*ated and interfered with her (reathing. -hree weeks after the de*i2ery. she was admitted to the hospita* with se2ere shortness of (reath from a p)*monary em(o*ism6a (*ood c*ot in an artery to the *)ngs. which is dangero)s ()t not )ncommon in cancer patients. he was started on a (*ood thinner. -hen test res)*ts showed that her t)mor ce**s did not ha2e the m)tation that -arce2a targets. >hen #arco)3 to*d ara that the dr)g wasn5t going to work. she had an a*most 2io*ent physica* reaction to the news. (o*ting to the (athroom in mid1disc)ssion with a s)dden (o)t of diarrhea. %r. #arco)3 recommended a different. more standard chemotherapy. with two dr)gs ca**ed car(op*atin and pac*ita3e*. ?)t the pac*ita3e* triggered an e3treme. near*y o2erwhe*ming a**ergic response. so he switched her to a regimen of car(op*atin p*)s gemcita(ine. 7esponse rates. he said. were sti** 2ery good for patients on this therapy. he spent the remainder of the s)mmer at home. with Ci2ian and her h)s(and and her parents. who had mo2ed in to he*p. he *o2ed (eing a mother. ?etween chemotherapy cyc*es. she (egan trying to get her *ife (ack. -hen. in !cto(er. a '- scan showed that the t)mor deposits in her *eft *)ng and chest and *ymph nodes had grown s)(stantia**y. -he chemotherapy had fai*ed. he was switched to a dr)g ca**ed pemetre3ed. t)dies fo)nd that it co)*d prod)ce marked*y *onger s)r2i2a* in some patients. &n rea*ity. howe2er. on*y a sma** percentage of patients gained 2ery m)ch. !n a2erage. the dr)g e3tended s)r2i2a* (y on*y two months6from e*e2en months to thirteen months6and that was in patients who. )n*ike ara. had responded to first1*ine chemotherapy. he worked hard to take the set(acks and side effects in stride. he was )p(eat (y nat)re. and she managed to maintain her optimism. Litt*e (y *itt*e. howe2er. she grew sicker6increasing*y e3ha)sted and short of (reath. ?y No2em(er. she didn5t ha2e the wind to wa*k the *ength of the ha**way from the parking garage to #arco)35s officeE 7ich had to p)sh her in a whee*chair. A few days (efore -hanksgi2ing. she had another '- scan. which showed that the pemetre3ed6her third dr)g regimen6wasn5t working. either. -he *)ng cancer had spread: from the *eft chest to the rightE to the *i2erE to the *ining of her a(domenE and to her spine. -ime was r)nning o)t. -his is the moment in ara5s story that poses a f)ndamenta* 8)estion for e2eryone *i2ing in the era of modern medicine: >hat do we want ara and her doctors to do nowF !r. to p)t it another way. if yo) were the one who had metastatic cancer6or. for that matter. a simi*ar*y ad2anced case of emphysema or congesti2e heart fai*)re6what wo)*d yo) want yo)r doctors to doF -he iss)e has (ecome pressing. in recent years. for reasons of e3pense. -he soaring cost of hea*th care is the greatest threat to the co)ntry5s *ong1term so*2ency. and the termina**y i** acco)nt for a *ot of it. -wenty1fi2e per cent of a** #edicare spending is for the fi2e per cent of patients who are in their fina* year of *ife. and most of that money goes for care in their *ast co)p*e of months which is of *itt*e apparent (enefit. pending on a disease *ike cancer tends to fo**ow a partic)*ar pattern. -here are high initia* costs as the cancer is treated. and then. if a** goes we**. these costs taper off. #edica* spending for a (reast1cancer s)r2i2or. for instance. a2eraged an estimated fifty1fo)r tho)sand Acesso em 12/05/2011 G

do**ars in 200G. the 2ast maAority of it for the initia* diagnostic testing. s)rgery. and. where necessary. radiation and chemotherapy. "or a patient with a fata* 2ersion of the disease. tho)gh. the cost c)r2e is ,1shaped. rising again toward the end6to an a2erage of si3ty1three tho)sand do**ars d)ring the *ast si3 months of *ife with an inc)ra(*e (reast cancer. !)r medica* system is e3ce**ent at trying to sta2e off death with eight1tho)sand1do**ar1a1month chemotherapy. three1tho)sand1do**ar1a1day intensi2e care. fi2e1tho)sand1do**ar1an1ho)r s)rgery. ?)t. )*timate*y. death comes. and no one is good at knowing when to stop. -he s)(Aect seems to reach nationa* awareness main*y as a 8)estion of who sho)*d ;win= when the e3pensi2e decisions are made: the ins)rers and the ta3payers footing the (i** or the patient (att*ing for his or her *ife. ?)dget hawks )rge )s to face the fact that we can5t afford e2erything. %emagog)es sho)t a(o)t rationing and death pane*s. #arket p)rists (*ame the e3istence of ins)rance: if patients and fami*ies paid the (i**s themse*2es. those e3pensi2e therapies wo)*d a** come down in price. ?)t they5re de(ating the wrong 8)estion. -he fai*)re of o)r system of medica* care for peop*e facing the end of their *ife r)ns m)ch deeper. -o see this. yo) ha2e to get c*ose eno)gh to grapp*e with the way decisions a(o)t care are act)a**y made. 7ecent*y. whi*e seeing a patient in an intensi2e1care )nit at my hospita*. & stopped to ta*k with the critica*1care physician on d)ty. someone &5d known since co**ege. ;&5m r)nning a wareho)se for the dying.= she said (*eak*y. !)t of the ten patients in her )nit. she said. on*y two were *ike*y to *ea2e the hospita* for any *ength of time. #ore typica* was an a*most eighty1year1o*d woman at the end of her *ife. with irre2ersi(*e congesti2e heart fai*)re. who was in the &.'.,. for the second time in three weeks. dr)gged to o(*i2ion and t)(ed in most nat)ra* orifices and a few artificia* ones. !r the se2enty1year1o*d with a cancer that had metastasiDed to her *)ngs and (one. and a f)nga* pne)monia that arises on*y in the fina* phase of the i**ness. he had chosen to forgo treatment. ()t her onco*ogist p)shed her to change her mind. and she was p)t on a 2enti*ator and anti(iotics. Another woman. in her eighties. with end1stage respiratory and kidney fai*)re. had (een in the )nit for two weeks. 4er h)s(and had died after a *ong i**ness. with a feeding t)(e and a tracheotomy. and she had mentioned that she didn5t want to die that way. ?)t her chi*dren co)*dn5t *et her go. and asked to proceed with the p*acement of 2ario)s de2ices: a permanent tracheotomy. a feeding t)(e. and a dia*ysis catheter. o now she A)st *ay there tethered to her p)mps. drifting in and o)t of conscio)sness. A*most a** these patients had known. for some time. that they had a termina* condition. Het they6 a*ong with their fami*ies and doctors6were )nprepared for the fina* stage. ;>e are ha2ing more con2ersation now a(o)t what patients want for the end of their *ife. (y far. than they ha2e had in a** their *i2es to this point.= my friend said. ;-he pro(*em is that5s way too *ate.= &n 2008. the nationa* 'oping with 'ancer proAect p)(*ished a st)dy showing that termina**y i** cancer patients who were p)t on a mechanica* 2enti*ator. gi2en e*ectrica* defi(ri**ation or chest compressions. or admitted. near death. to intensi2e care had a s)(stantia**y worse 8)a*ity of *ife in their *ast week than those who recei2ed no s)ch inter2entions. And. si3 months after their death. their caregi2ers were three times as *ike*y to s)ffer maAor depression. pending one5s fina* days in an &.'.,. (eca)se of termina* i**ness is for most peop*e a kind of fai*)re. Ho) *ie on a 2enti*ator. yo)r e2ery organ sh)tting down. yo)r mind teetering on de*iri)m and permanent*y (eyond rea*iDing that yo) wi** ne2er *ea2e this (orrowed. f*)orescent p*ace. -he end comes with no chance for yo) to ha2e said good(ye or ;&t5s !.<.= or ;&5m sorry= or ;& *o2e yo).= Beop*e ha2e concerns (esides simp*y pro*onging their *i2es. )r2eys of patients with termina* i**ness find that their top priorities inc*)de. in addition to a2oiding s)ffering. (eing with fami*y. ha2ing the to)ch of others. (eing menta**y aware. and not (ecoming a ()rden to Acesso em 12/05/2011 I

others. !)r system of techno*ogica* medica* care has )tter*y fai*ed to meet these needs. and the cost of this fai*)re is meas)red in far more than do**ars. -he hard 8)estion we face. then. is not how we can afford this system5s e3pense. &t is how we can ()i*d a hea*th1care system that wi** act)a**y he*p dying patients achie2e what5s most important to them at the end of their *i2es. "or a** ()t o)r most recent history. dying was typica**y a (rief process. >hether the ca)se was chi*dhood infection. diffic)*t chi*d(irth. heart attack. or pne)monia. the inter2a* (etween recogniDing that yo) had a *ife1threatening ai*ment and death was often A)st a matter of days or weeks. 'onsider how o)r Bresidents died (efore the modern era. +eorge >ashington de2e*oped a throat infection at home on %ecem(er 1G. 1:JJ. that ki**ed him (y the ne3t e2ening. 9ohn K)incy Adams. #i**ard "i**more. and Andrew 9ohnson a** s)cc)m(ed to strokes. and died within two days. 7)therford 4ayes had a heart attack and died three days *ater. ome dead*y i**nesses took a *onger co)rse: 9ames #onroe and Andrew 9ackson died from the months1*ong cons)mpti2e process of what appears to ha2e (een t)(erc)*osisE ,*ysses +rant5s ora* cancer took a year to ki** himE and 9ames #adison was (edridden for two years (efore dying of ;o*d age.= ?)t. as the end1of1*ife researcher 9oanne Lynn has o(ser2ed. peop*e )s)a**y e3perienced *ife1threatening i**ness the way they e3perienced (ad weather6as something that str)ck with *itt*e warning6and yo) either got thro)gh it or yo) didn5t. %ying )sed to (e accompanied (y a prescri(ed set of c)stoms. +)ides to ars moriendi. the art of dying. were e3traordinari*y pop)*arE a 1I15 medie2a* Latin te3t was reprinted in more than a h)ndred editions across $)rope. 7eaffirming one5s faith. repenting one5s sins. and *etting go of one5s wor*d*y possessions and desires were cr)cia*. and the g)ides pro2ided fami*ies with prayers and 8)estions for the dying in order to p)t them in the right frame of mind d)ring their fina* ho)rs. Last words came to ho*d a partic)*ar p*ace of re2erence. -hese days. swift catastrophic i**ness is the e3ceptionE for most peop*e. death comes on*y after *ong medica* str)gg*e with an inc)ra(*e condition6ad2anced cancer. progressi2e organ fai*)re L)s)a**y the heart. kidney. or *i2erM. or the m)*tip*e de(i*ities of 2ery o*d age. &n a** s)ch cases. death is certain. ()t the timing isn5t. o e2eryone str)gg*es with this )ncertainty6with how. and when. to accept that the (att*e is *ost. As for *ast words. they hard*y seem to e3ist anymore. -echno*ogy s)stains o)r organs )nti* we are we** past the point of awareness and coherence. ?esides. how do yo) attend to the tho)ghts and concerns of the dying when medicine has made it a*most impossi(*e to (e s)re who the dying e2en areF &s someone with termina* cancer. dementia. inc)ra(*e congesti2e heart fai*)re dying. e3act*yF & once cared for a woman in her si3ties who had se2ere chest and a(domina* pain from a (owe* o(str)ction that had r)pt)red her co*on. ca)sed her to ha2e a heart attack. and p)t her into septic shock and rena* fai*)re. & performed an emergency operation to remo2e the damaged *ength of co*on and gi2e her a co*ostomy. A cardio*ogist stented her coronary arteries. >e p)t her on dia*ysis. a 2enti*ator. and intra2eno)s feeding. and sta(i*iDed her. After a co)p*e of weeks. tho)gh. it was c*ear that she was not going to get m)ch (etter. -he septic shock had *eft her with heart and respiratory fai*)re as we** as dry gangrene of her foot. which wo)*d ha2e to (e amp)tated. he had a *arge. open a(domina* wo)nd with *eaking (owe* contents. which wo)*d re8)ire twice1a1day c*eaning and dressing for weeks in order to hea*. he wo)*d not (e a(*e to eat. he wo)*d need a tracheotomy. 4er kidneys were gone. and she wo)*d ha2e to spend three days a week on a dia*ysis machine for the rest of her *ife. he was )nmarried and witho)t chi*dren. o & sat with her sisters in the &.'.,. fami*y room to ta*k a(o)t whether we sho)*d proceed with the amp)tation and the tracheotomy. ;&s she dyingF= one of the sisters asked me. & didn5t know how to answer the 8)estion. & wasn5t e2en s)re what the word ;dying= meant anymore. &n the past few decades. medica* science has Acesso em 12/05/2011 5

rendered o(so*ete cent)ries of e3perience. tradition. and *ang)age a(o)t o)r morta*ity. and created a new diffic)*ty for mankind: how to die. !ne "riday morning this spring. & went on patient ro)nds with arah 'reed. a n)rse with the hospice ser2ice that my hospita* system operates. & didn5t know m)ch a(o)t hospice. & knew that it specia*iDed in pro2iding ;comfort care= for the termina**y i**. sometimes in specia* faci*ities. tho)gh nowadays )s)a**y at home. & knew that. in order for a patient of mine to (e e*igi(*e. & had to write a note certifying that he or she had a *ife e3pectancy of *ess than si3 months. And & knew few patients who had chosen it. e3cept may(e in their 2ery *ast few days. (eca)se they had to sign a form indicating that they )nderstood their disease was inc)ra(*e and that they were gi2ing )p on medica* care to stop it. -he pict)re & had of hospice was of a morphine drip. &t was not of this (rown1haired and (*)e1eyed former &.'.,. n)rse with a stethoscope. knocking on Lee 'o35s door on a 8)iet street in ?oston5s #attapan neigh(orhood. ;4i. Lee.= 'reed said when she entered the ho)se. ;4i. arah.= 'o3 said. he was se2enty1two years o*d. he5d had se2era* years of dec*ining hea*th d)e to congesti2e heart fai*)re from a heart attack and p)*monary fi(rosis. a progressi2e and irre2ersi(*e *)ng disease. %octors tried s*owing the disease with steroids. ()t they didn5t work. he had cyc*ed in and o)t of the hospita*. each time in worse shape. ,*timate*y. she accepted hospice care and mo2ed in with her niece for s)pport. he was dependent on o3ygen. and )na(*e to do the most ordinary tasks. 9)st answering the door. with her thirty1foot *ength of o3ygen t)(ing trai*ing after her. had *eft her winded. he stood resting for a moment. her *ips p)rsed and her chest hea2ing. 'reed took 'o35s arm gent*y as we wa*ked to the kitchen to sit down. asking her how she had (een doing. -hen she asked a series of 8)estions. targeting iss)es that tend to arise in patients with termina* i**ness. %id 'o3 ha2e painF 4ow was her appetite. thirst. s*eepingF Any tro)(*e with conf)sion. an3iety. or rest*essnessF 4ad her shortness of (reath grown worseF >as there chest pain or heart pa*pitationsF A(domina* discomfortF -ro)(*e with (owe* mo2ements or )rination or wa*kingF he did ha2e some new tro)(*es. >hen she wa*ked from the (edroom to the (athroom. she said. it now took at *east fi2e min)tes to catch her (reath. and that frightened her. he was a*so getting chest pain. 'reed p)**ed a stethoscope and a (*ood1press)re c)ff from her medica* (ag. 'o35s (*ood press)re was accepta(*e. ()t her heart rate was high. 'reed *istened to her heart. which had a norma* rhythm. and to her *)ngs. hearing the fine crack*es of her p)*monary fi(rosis ()t a*so a new wheeDe. 4er ank*es were swo**en with f*)id. and when 'reed asked for her pi**(o3 she saw that 'o3 was o)t of her heart medication. he asked to see 'o35s o3ygen e8)ipment. -he *i8)id1o3ygen cy*inder at the foot of the neat*y made (ed was fi**ed and working proper*y. -he ne()*iDer e8)ipment for her inha*er treatments. howe2er. was (roken. +i2en the *ack of heart medication and inha*er treatments. it was no wonder that she had worsened. 'reed ca**ed 'o35s pharmacy to confirm that her refi**s had (een waiting. and had her arrange for her niece to pick )p the medicine when she came home from work. 'reed a*so ca**ed the ne()*iDer s)pp*ier for same1day emergency ser2ice. he then chatted with 'o3 in the kitchen for a few min)tes. 4er spirits were *ow. 'reed took her hand. $2erything was going to (e a** right. she said. he reminded her a(o)t the good days she5d had6the pre2io)s weekend. for e3amp*e. when she5d (een a(*e to go o)t with her porta(*e o3ygen cy*inder to shop with her niece and get her hair co*ored. & asked 'o3 a(o)t her pre2io)s *ife. he had made radios in a ?oston factory. he and her h)s(and had two chi*dren. and se2era* grandchi*dren. Acesso em 12/05/2011 N

>hen & asked her why she had chosen hospice care. she *ooked downcast. ;-he *)ng doctor and heart doctor said they co)*dn5t he*p me anymore.= she said. 'reed g*ared at me. #y 8)estions had made 'o3 sad again. ;&t5s good to ha2e my niece and her h)s(and he*ping to watch me e2ery day.= she said. ;?)t it5s not my home. & fee* *ike &5m in the way.= 'reed ga2e her a h)g (efore we *eft. and one *ast reminder. ;>hat do yo) do if yo) ha2e chest pain that doesn5t go awayF= she asked. ;-ake a nitro.= 'o3 said. referring to the nitrog*ycerin pi** that she can s*ip )nder her tong)e. ;AndF= ;'a** yo).= ;>here5s the n)m(erF= he pointed to the twenty1fo)r1ho)r hospice ca** n)m(er that was taped (eside her phone. !)tside. & confessed that & was conf)sed (y what 'reed was doing. A *ot of it seemed to (e a(o)t e3tending 'o35s *ife. >asn5t the goa* of hospice to *et nat)re take its co)rseF ;-hat5s not the goa*.= 'reed said. -he difference (etween standard medica* care and hospice is not the difference (etween treating and doing nothing. she e3p*ained. -he difference was in yo)r priorities. &n ordinary medicine. the goa* is to e3tend *ife. >e5** sacrifice the 8)a*ity of yo)r e3istence now6(y performing s)rgery. pro2iding chemotherapy. p)tting yo) in intensi2e care6for the chance of gaining time *ater. 4ospice dep*oys n)rses. doctors. and socia* workers to he*p peop*e with a fata* i**ness ha2e the f)**est possi(*e *i2es right now. -hat means foc)ssing on o(Aecti2es *ike freedom from pain and discomfort. or maintaining menta* awareness for as *ong as possi(*e. or getting o)t with fami*y once in a whi*e. 4ospice and pa**iati2e1care specia*ists aren5t m)ch concerned a(o)t whether that makes peop*e5s *i2es *onger or shorter. Like many peop*e. & had (e*ie2ed that hospice care hastens death. (eca)se patients forgo hospita* treatments and are a**owed high1dose narcotics to com(at pain. ?)t st)dies s)ggest otherwise. &n one. researchers fo**owed I.IJG #edicare patients with either termina* cancer or congesti2e heart fai*)re. -hey fo)nd no difference in s)r2i2a* time (etween hospice and non1hospice patients with (reast cancer. prostate cancer. and co*on cancer. ')rio)s*y. hospice care seemed to e3tend s)r2i2a* for some patientsE those with pancreatic cancer gained an a2erage of three weeks. those with *)ng cancer gained si3 weeks. and those with congesti2e heart fai*)re gained three months. -he *esson seems a*most Oen: yo) *i2e *onger on*y when yo) stop trying to *i2e *onger. >hen 'o3 was transferred to hospice care. her doctors tho)ght that she wo)*dn5t *i2e m)ch *onger than a few weeks. >ith the s)pporti2e hospice therapy she recei2ed. she had a*ready *i2ed for a year. 'reed enters peop*e5s *i2es at a strange moment6when they ha2e )nderstood that they ha2e a fata* i**ness ()t ha2e not necessari*y acknow*edged that they are dying. ;&5d say on*y a(o)t a 8)arter ha2e accepted their fate when they come into hospice.= she said. >hen she first enco)nters her patients. many fee* that they ha2e simp*y (een a(andoned (y their doctors. ;Ninety1nine per cent )nderstand they5re dying. ()t one h)ndred per cent hope they5re not.= she says. ;-hey sti** want to (eat their disease.= -he initia* 2isit is a*ways tricky. ()t she has fo)nd ways to smooth things o2er. ;A n)rse has fi2e seconds to make a patient *ike yo) and tr)st yo). &t5s in the who*e way yo) present yo)rse*f. & do not come in saying. @&5m so sorry.5 &nstead. it5s: @&5m the hospice n)rse. and here5s what & ha2e to offer yo) to make yo)r *ife (etter. And & know we don5t ha2e a *ot of time to waste.5 = -hat was how she started with %a2e +a**oway. whom we 2isited after *ea2ing Lee 'o35s home. 4e was forty1two years o*d. 4e and his wife. haron. were (oth ?oston firefighters. Acesso em 12/05/2011 :

-hey had a three1year1o*d da)ghter. 4e had pancreatic cancer. which had spreadE his )pper a(domen was now so*id with t)mor. %)ring the past few months. the pain had (ecome )n(eara(*e at times. and he was admitted to the hospita* se2era* times for pain crises. At his most recent admission. a(o)t a week ear*ier. it was fo)nd that the t)mor had perforated his intestine. -here wasn5t e2en a temporary fi3 for this pro(*em. -he medica* team started him on intra2eno)s n)trition and offered him a choice (etween going to the intensi2e1care )nit and going home with hospice. 4e chose to go home. ;& wish we5d gotten in2o*2ed sooner.= 'reed to*d me. >hen she and the hospice5s s)per2ising doctor. %r. 9oAnne Nowak. e2a*)ated +a**oway )pon his arri2a* at home. he appeared to ha2e on*y a few days *eft. 4is eyes were ho**ow. 4is (reathing was *a(ored. "*)id swe**ed his entire *ower (ody to the point that his skin (*istered and wept. 4e was a*most de*irio)s with a(domina* pain. -hey got to work. -hey set )p a pain p)mp with a ()tton that *et him dispense higher doses of narcotic than he had (een a**owed. -hey arranged for an e*ectric hospita* (ed. so that he co)*d s*eep with his (ack raised. -hey a*so ta)ght haron how to keep %a2e c*ean. protect his skin from (reakdown. and hand*e the crises to come. 'reed to*d me that part of her Ao( is to take the meas)re of a patient5s fami*y. and haron str)ck her as )n)s)a**y capa(*e. he was determined to take care of her h)s(and to the end. and. perhaps (eca)se she was a firefighter. she had the resi*ience and the competence to do so. he did not want to hire a pri2ate1d)ty n)rse. he hand*ed e2erything. from the &.C. *ines and the (ed *inens to orchestrating fami*y mem(ers to *end a hand when she needed he*p. 'reed arranged for a specia*iDed ;comfort pack= to (e de*i2ered (y "ed$3 and stored in a mini1 refrigerator (y %a2e5s (ed. &t contained a dose of morphine for (reakthro)gh pain or shortness of (reath. Ati2an for an3iety attacks. 'ompaDine for na)sea. 4a*do* for de*iri)m. -y*eno* for fe2er. and atropine for drying )p the )pper1airway ratt*e that peop*e can get in their fina* ho)rs. &f any s)ch pro(*em de2e*oped. haron was instr)cted to ca** the twenty1fo)r1ho)r hospice n)rse on d)ty. who wo)*d pro2ide instr)ctions a(o)t which resc)e medications to )se and. if necessary. come o)t to he*p. %a2e and haron were fina**y a(*e to s*eep thro)gh the night at home. 'reed or another n)rse came to see him e2ery day. sometimes twice a dayE three times that week. haron )sed the emergency hospice *ine to he*p her dea* with %a2e5s pain crises or ha**)cinations. After a few days. they were e2en a(*e to go o)t to a fa2orite resta)rantE he wasn5t h)ngry. ()t they enAoyed A)st (eing there. and the memories it stirred. -he hardest part so far. haron said. was deciding to forgo the two1*itre intra2eno)s feedings that %a2e had (een recei2ing each day. A*tho)gh they were his on*y so)rce of ca*ories. the hospice staff enco)raged discontin)ing them (eca)se his (ody did not seem to (e a(sor(ing the n)trition. -he inf)sion of s)gars. proteins. and fats made the painf)* swe**ing of his skin and his shortness of (reath worse6and for whatF -he mantra was *i2e for now. haron had (a*ked. for fear that she5d (e star2ing him. -he night (efore o)r 2isit. howe2er. she and %a2e decided to try going witho)t the inf)sion. ?y morning. the swe**ing was marked*y red)ced. 4e co)*d mo2e more. and with *ess discomfort. 4e a*so (egan to eat a few morse*s of food. A)st for the taste of it. and that made haron fee* (etter a(o)t the decision. >hen we arri2ed. %a2e was making his way (ack to (ed after a shower. his arm aro)nd his wife5s sho)*ders and his s*ippered feet taking one sh)ff*ing step at a time. ;-here5s nothing he *ikes (etter than a *ong hot shower.= haron said. ;4e5d *i2e in the shower if he co)*d.= %a2e sat on the edge of his (ed in fresh paAamas. catching his (reath. and then 'reed spoke to him as his da)ghter. Ash*ee. ran in and o)t of the room in her (eaded pigtai*s. depositing st)ffed anima*s in her dad5s *ap. Acesso em 12/05/2011 8

;4ow5s yo)r pain on a sca*e of one to tenF= 'reed asked. ;A si3.= he said. ;%id yo) hit the p)mpF= 4e didn5t answer for a moment. ;&5m re*)ctant.= he admitted. ;>hyF= 'reed asked. ;&t fee*s *ike defeat.= he said. ;%efeatF= ;& don5t want to (ecome a dr)g addict.= he e3p*ained. ;& don5t want to need this.= 'reed got down on her knees in front of him. ;%a2e. & don5t know anyone who can manage this kind of pain witho)t the medication.= she said. ;&t5s not defeat. Ho)52e got a (ea)tif)* wife and da)ghter. and yo)5re not going to (e a(*e to enAoy them with the pain.= ;Ho)5re right a(o)t that.= he said. *ooking at Ash*ee as she ga2e him a *itt*e horse. And he pressed the ()tton. %a2e +a**oway died one week *ater6at home. at peace. and s)rro)nded (y fami*y. A week after that. Lee 'o3 died. too. ?)t. as if to show A)st how resistant to form)*a h)man *i2es are. 'o3 had ne2er reconci*ed herse*f to the inc)ra(i*ity of her i**nesses. o when her fami*y fo)nd her in cardiac arrest one morning they fo**owed her wishes and ca**ed J11 instead of the hospice ser2ice. -he emergency medica* technicians and firefighters and po*ice r)shed in. -hey p)**ed off her c*othes and p)mped her chest. p)t a t)(e in her airway and forced o3ygen into her *)ngs. and tried to see if they co)*d shock her heart (ack. ?)t s)ch efforts rare*y s)cceed with termina* patients. and they did not s)cceed with her. 4ospice has tried to offer a new idea* for how we die. A*tho)gh not e2eryone has em(raced its rit)a*s. those who ha2e are he*ping to negotiate an ars moriendi for o)r age. ?)t doing so represents a str)gg*e 6not on*y against s)ffering ()t a*so against the seeming*y )nstoppa(*e moment)m of medica* treatment. 9)st (efore -hanksgi2ing of 200:. ara #onopo*i. her h)s(and. 7ich. and her mother. %awn -homas. met with %r. #arco)3 to disc)ss the options she had *eft. ?y this point. ara had )ndergone three ro)nds of chemotherapy with *imited. if any. effect. Berhaps #arco)3 co)*d ha2e disc)ssed what she most wanted as death neared and how (est to achie2e those wishes. ?)t the signa* he got from ara and her fami*y was that they wished to ta*k on*y a(o)t the ne3t treatment options. -hey did not want to ta*k a(o)t dying. 7ecent*y. & spoke to ara5s h)s(and and her parents. ara knew that her disease was inc)ra(*e. they pointed o)t. -he week after she was gi2en the diagnosis and de*i2ered her (a(y. she spe**ed o)t her wishes for Ci2ian5s )p(ringing after she was gone. he had to*d her fami*y on se2era* occasions that she did not want to die in the hospita*. he wanted to spend her fina* moments peacef)**y at home. ?)t the prospect that those moments might (e coming soon. that there might (e no way to s*ow the disease. ;was not something she or & wanted to disc)ss.= her mother said. 4er father. +ary. and her twin sister. $mi*y. sti** he*d o)t hope for a c)re. -he doctors simp*y weren5t *ooking hard eno)gh. they fe*t. ;& A)st co)*dn5t (e*ie2e there wasn5t something.= +ary said. "or 7ich. the e3perience of ara5s i**ness had (een disorienting: ;>e had a (a(y. >e were yo)ng. And this was so shocking and so odd. >e ne2er disc)ssed stopping treatment.= #arco)3 took the meas)re of the room. >ith a*most two decades of e3perience treating *)ng cancer. he had (een thro)gh many of these con2ersations. 4e has a ca*m. reass)ring air and a nati2e #innesotan5s tendency to a2oid confrontation or o2erintimacy. 4e tries to (e scientific a(o)t decisions. ;& know that the 2ast maAority of my patients are going to die of their disease.= he to*d me. -he data show that. after fai*)re of second1*ine chemotherapy. *)ng1cancer patients rare*y get Acesso em 12/05/2011 J

any added s)r2i2a* time from f)rther treatments and often s)ffer significant side effects. ?)t he. too. has his hopes. 4e to*d them that. at some point. ;s)pporti2e care= was an option for them to think a(o)t. ?)t. he went on. there were a*so e3perimenta* therapies. 4e to*d them a(o)t se2era* that were )nder tria*. -he most promising was a BfiDer dr)g that targeted one of the m)tations fo)nd in her cancer5s ce**s. ara and her fami*y instant*y pinned their hopes on it. -he dr)g was so new that it didn5t e2en ha2e a name. A)st a n)m(er6B"02G100N6and this made it a** the more enticing. -here were a few ho2ering iss)es. inc*)ding the fact that the scientists didn5t yet know the safe dose. -he dr)g was on*y in a Bhase & tria*6that is. a tria* designed to determine the to3icity of a range of doses. not whether the dr)g worked. ")rthermore. a test of the dr)g against her cancer ce**s in a petri dish showed no effect. ?)t #arco)3 didn5t think that these were decisi2e o(stac*es6A)st negati2es. -he critica* pro(*em was that the r)*es of the tria* e3c*)ded ara (eca)se of the p)*monary em(o*ism she had de2e*oped that s)mmer. -o enro**. she wo)*d need to wait two months. in order to get far eno)gh past the episode. &n the meantime. he s)ggested trying another con2entiona* chemotherapy. ca**ed Na2e*(ine. ara (egan the treatment the #onday after -hanksgi2ing. &t5s worth pa)sing to consider what had A)st happened. tep (y step. ara ended )p on a fourth ro)nd of chemotherapy. one with a min)sc)*e *ike*ihood of a*tering the co)rse of her disease and a great *ike*ihood of ca)sing de(i*itating side effects. An opport)nity to prepare for the ine2ita(*e was forgone. And it a** happened (eca)se of an ass)red*y norma* circ)mstance: a patient and fami*y )nready to confront the rea*ity of her disease. & asked #arco)3 what he hopes to accomp*ish for termina* *)ng1cancer patients when they first come to see him. ;&5m thinking. 'an & get them a pretty good year or two o)t of thisF= he said. ;-hose are my e3pectations. "or me. the *ong tai* for a patient *ike her is three to fo)r years.= ?)t this is not what peop*e want to hear. ;-hey5re thinking ten to twenty years. Ho) hear that time and time again. And &5d (e the same way if & were in their shoes.= Ho)5d think doctors wo)*d (e we** e8)ipped to na2igate the shoa*s here. ()t at *east two things get in the way. "irst. o)r own 2iews may (e )nrea*istic. A st)dy *ed (y the 4ar2ard researcher Nicho*as 'hristakis asked the doctors of a*most fi2e h)ndred termina**y i** patients to estimate how *ong they tho)ght their patient wo)*d s)r2i2e. and then fo**owed the patients. i3ty1three per cent of doctors o2erestimated s)r2i2a* time. 9)st se2enteen per cent )nderestimated it. -he a2erage estimate was fi2e h)ndred and thirty per cent too high. And. the (etter the doctors knew their patients. the more *ike*y they were to err. econd. we often a2oid 2oicing e2en these sentiments. t)dies find that a*tho)gh doctors )s)a**y te** patients when a cancer is not c)ra(*e. most are re*)ctant to gi2e a specific prognosis. e2en when pressed. #ore than forty per cent of onco*ogists report offering treatments that they (e*ie2e are )n*ike*y to work. &n an era in which the re*ationship (etween patient and doctor is increasing*y miscast in retai* terms6;the c)stomer is a*ways right=6doctors are especia**y hesitant to tramp*e on a patient5s e3pectations. Ho) worry far more a(o)t (eing o2er*y pessimistic than yo) do a(o)t (eing o2er*y optimistic. And ta*king a(o)t dying is enormo)s*y fra)ght. >hen yo) ha2e a patient *ike ara #onopo*i. the *ast thing yo) want to do is grapp*e with the tr)th. & know. (eca)se #arco)3 wasn5t the on*y one a2oiding that con2ersation with her. & was. too. $ar*ier that s)mmer. a B$- scan had re2ea*ed that. in addition to her *)ng cancer. she a*so had thyroid cancer. which had spread to the *ymph nodes of her neck. and & was ca**ed in to decide whether to operate. -his second. )nre*ated cancer was in fact opera(*e. ?)t thyroid cancers take years to (ecome *etha*. 4er *)ng cancer wo)*d a*most certain*y end her *ife *ong (efore her thyroid cancer ca)sed any tro)(*e. +i2en the e3tent of the s)rgery that wo)*d ha2e Acesso em 12/05/2011 10

(een re8)ired. and the potentia* comp*ications. the (est co)rse was to do nothing. ?)t e3p*aining my reasoning to ara meant confronting the morta*ity of her *)ng cancer. something that & fe*t i** prepared to do. itting in my c*inic. ara did not seem disco)raged (y the disco2ery of this second cancer. he seemed determined. he5d read a(o)t the good o)tcomes from thyroid1cancer treatment. o she was geared )p. eager to disc)ss when to operate. And & fo)nd myse*f swept a*ong (y her optimism. )ppose & was wrong. & wondered. and she pro2ed to (e that mirac*e patient who s)r2i2ed metastatic *)ng cancerF #y so*)tion was to a2oid the s)(Aect a*together. & to*d ara that the thyroid cancer was s*ow1growing and treata(*e. -he priority was her *)ng cancer. & said. Let5s not ho*d )p the treatment for that. >e co)*d monitor the thyroid cancer and p*an s)rgery in a few months. & saw her e2ery si3 weeks. and noted her physica* dec*ine from one 2isit to the ne3t. Het. e2en in a whee*chair. ara wo)*d a*ways arri2e smi*ing. make)p on and (angs (o((y1pinned o)t of her eyes. he5d find sma** things to *a)gh a(o)t. *ike the t)(es that created strange prot)(erances )nder her dress. he was ready to try anything. and & fo)nd myse*f foc)ssing on the news a(o)t e3perimenta* therapies for her *)ng cancer. After one of her chemotherapies seemed to shrink the thyroid cancer s*ight*y. & e2en raised with her the possi(i*ity that an e3perimenta* therapy co)*d work against (oth her cancers. which was sheer fantasy. %isc)ssing a fantasy was easier6*ess emotiona*. *ess e3p*osi2e. *ess prone to mis)nderstanding6than disc)ssing what was happening (efore my eyes. ?etween the *)ng cancer and the chemo. ara (ecame steadi*y sicker. he s*ept most of the time and co)*d do *itt*e o)t of the ho)se. '*inic notes from %ecem(er descri(e shortness of (reath. dry hea2es. co)ghing )p (*ood. se2ere fatig)e. &n addition to the drainage t)(es in her chest. she re8)ired need*e1 drainage proced)res in her a(domen e2ery week or two to re*ie2e the se2ere press)re from the *itres of f*)id that the cancer was prod)cing there. A '- scan in %ecem(er showed that the *)ng cancer was spreading thro)gh her spine. *i2er. and *)ngs. >hen we met in 9an)ary. she co)*d mo2e on*y s*ow*y and )ncomforta(*y. 4er *ower (ody had (ecome swo**en. he co)*dn5t speak more than a sentence witho)t pa)sing for (reath. ?y the first week of "e(r)ary. she needed o3ygen at home to (reathe. $no)gh time had e*apsed since her p)*monary em(o*ism. howe2er. that she co)*d start on BfiDer5s e3perimenta* dr)g. he A)st needed one more set of scans for c*earance. -hese re2ea*ed that the cancer had spread to her (rain. with at *east nine metastatic growths across (oth hemispheres. -he e3perimenta* dr)g was not designed to cross the (*ood1(rain (arrier. B"02G100N was not going to work. And sti** ara. her fami*y. and her medica* team remained in (att*e mode. >ithin twenty1fo)r ho)rs. ara was sched)*ed to see a radiation onco*ogist for who*e1(rain radiation to try to red)ce the metastases. !n "e(r)ary 12th. she comp*eted fi2e days of radiation treatment. which *eft her immeas)ra(*y fatig)ed. (are*y a(*e get o)t of (ed. he ate a*most nothing. he weighed twenty1fi2e po)nds *ess than she had in the fa**. he confessed to 7ich that. for the past two months. she had e3perienced do)(*e 2ision and was )na(*e to fee* her hands. ;>hy didn5t yo) te** anyoneF= he asked her. ;& A)st didn5t want to stop treatment.= she said. ;-hey wo)*d make me stop.= he was gi2en two weeks to reco2er her strength after the radiation. -hen she wo)*d (e p)t on another e3perimenta* dr)g from a sma** (iotech company. he was sched)*ed to start on "e(r)ary 25th. 4er chances were rapid*y dwind*ing. ?)t who was to say they were DeroF &n 1J85. the pa*eonto*ogist and writer tephen 9ay +o)*d p)(*ished an e3traordinary essay entit*ed ;-he #edian &sn5t the #essage.= after he had (een gi2en a diagnosis. three years ear*ier. of a(domina* mesothe*ioma. a rare and *etha* cancer )s)a**y associated with as(estos e3pos)re. 4e went to a medica* *i(rary when he got the diagnosis and p)**ed o)t the *atest Acesso em 12/05/2011 11

scientific artic*es on the disease. ;-he *iterat)re co)*dn5t ha2e (een more (r)ta**y c*ear: mesothe*ioma is inc)ra(*e. with a median s)r2i2a* of on*y eight months after disco2ery.= he wrote. -he news was de2astating. ?)t then he (egan *ooking at the graphs of the patient1s)r2i2a* c)r2es. +o)*d was a nat)ra*ist. and more inc*ined to notice the 2ariation aro)nd the c)r2e5s midd*e point than the midd*e point itse*f. >hat the nat)ra*ist saw was remarka(*e 2ariation. -he patients were not c*)stered aro)nd the median s)r2i2a* ()t. instead. fanned o)t in (oth directions. #oreo2er. the c)r2e was skewed to the right. with a *ong tai*. howe2er s*ender. of patients who *i2ed many years *onger than the eight1month median. -his is where he fo)nd so*ace. 4e co)*d imagine himse*f s)r2i2ing far o)t in that *ong tai*. And he did. "o**owing s)rgery and e3perimenta* chemotherapy. he *i2ed twenty more years (efore dying. in 2002. at the age of si3ty. from a *)ng cancer that was )nre*ated to his origina* disease. ;&t has (ecome. in my 2iew. a (it too trendy to regard the acceptance of death as something tantamo)nt to intrinsic dignity.= he wrote in his 1J85 essay. ;!f co)rse & agree with the preacher of $cc*esiastes that there is a time to *o2e and a time to die6and when my skein r)ns o)t & hope to face the end ca*m*y and in my own way. "or most sit)ations. howe2er. & prefer the more martia* 2iew that death is the )*timate enemy6and & find nothing reproacha(*e in those who rage mighti*y against the dying of the *ight.= & think of +o)*d and his essay e2ery time & ha2e a patient with a termina* i**ness. -here is a*most a*ways a *ong tai* of possi(i*ity. howe2er thin. >hat5s wrong with *ooking for itF Nothing. it seems to me. )n*ess it means we ha2e fai*ed to prepare for the o)tcome that5s 2ast*y more pro(a(*e. -he tro)(*e is that we52e ()i*t o)r medica* system and c)*t)re aro)nd the *ong tai*. >e52e created a m)*titri**ion1 do**ar edifice for dispensing the medica* e8)i2a*ent of *ottery tickets6and ha2e on*y the r)diments of a system to prepare patients for the near1certainty that those tickets wi** not win. 4ope is not a p*an. ()t hope is o)r p*an. "or ara. there wo)*d (e no mirac)*o)s reco2ery. and. when the end approached. neither she nor her fami*y was prepared. ;& a*ways wanted to respect her re8)est to die peacef)**y at home.= 7ich *ater to*d me. ;?)t & didn5t (e*ie2e we co)*d make it happen. & didn5t know how.= !n the morning of "riday. "e(r)ary 22nd. three days (efore she was to start her new ro)nd of chemo. 7ich awoke to find his wife sitting )pright (eside him. pitched forward on her arms. eyes wide. str)gg*ing for air. he was gray. (reathing fast. her (ody hea2ing with each open1mo)thed gasp. he *ooked as if she were drowning. 4e tried t)rning )p the o3ygen in her nasa* t)(ing. ()t she got no (etter. ;& can5t do this.= she said. pa)sing (etween each word. ;&5m scared.= 4e had no emergency kit in the refrigerator. No hospice n)rse to ca**. And how was he to know whether this new de2e*opment was fi3a(*eF >e5** go to the hospita*. he to*d her. >hen he asked if they sho)*d dri2e. she shook her head. so he ca**ed J11. and to*d her mother. %awn. who was in the ne3t room. what was going on. A few min)tes *ater. firemen swarmed )p the stairs to her (edroom. sirens wai*ing o)tside. As they *ifted ara into the am()*ance on a stretcher. %awn came o)t in tears. ;>e5re going to get aho*d of this.= 7ich to*d her. -his was A)st another trip to the hospita*. he said to himse*f. -he doctors wo)*d fig)re this o)t. At the hospita*. ara was diagnosed with pne)monia. -hat tro)(*ed the fami*y. (eca)se they tho)ght they5d done e2erything to keep infection at (ay. -hey5d washed hands scr)p)*o)s*y. *imited 2isits (y peop*e with yo)ng chi*dren. e2en *imited ara5s time with (a(y Ci2ian if she showed the s*ightest sign of a r)nny nose. ?)t ara5s imm)ne system and her a(i*ity to c*ear her *)ng secretions had (een steadi*y weakened (y the ro)nds of radiation and chemotherapy as we** as (y the cancer. Acesso em 12/05/2011 12

&n another way. the diagnosis of pne)monia was reass)ring. (eca)se it was A)st an infection. &t co)*d (e treated. -he medica* team started ara on intra2eno)s anti(iotics and high1f*ow o3ygen thro)gh a mask. -he fami*y gathered at her (edside. hoping for the anti(iotics to work. -his co)*d (e re2ersi(*e. they to*d one another. ?)t that night and the ne3t morning her (reathing on*y grew more *a(ored. ;& can5t think of a sing*e f)nny thing to say.= $mi*y to*d ara as their parents *ooked on. ;Neither can &.= ara m)rm)red. !n*y *ater did the fami*y rea*iDe that those were the *ast words they wo)*d e2er hear from her. After that. she (egan to drift in and o)t of conscio)sness. -he medica* team had on*y one option *eft: to p)t her on a 2enti*ator. ara was a fighter. rightF And the ne3t step for fighters was to esca*ate to intensi2e care. -his is a modern tragedy. rep*ayed mi**ions of times o2er. >hen there is no way of knowing e3act*y how *ong o)r skeins wi** r)n6and when we imagine o)rse*2es to ha2e m)ch more time than we do6o)r e2ery imp)*se is to fight. to die with chemo in o)r 2eins or a t)(e in o)r throats or fresh s)t)res in o)r f*esh. -he fact that we may (e shortening or worsening the time we ha2e *eft hard*y seems to register. >e imagine that we can wait )nti* the doctors te** )s that there is nothing more they can do. ?)t rare*y is there nothing more that doctors can do. -hey can gi2e to3ic dr)gs of )nknown efficacy. operate to try to remo2e part of the t)mor. p)t in a feeding t)(e if a person can5t eat: there5s a*ways something. >e want these choices. >e don5t want anyone6certain*y not ()rea)crats or the marketp*ace6to *imit them. ?)t that doesn5t mean we are eager to make the choices o)rse*2es. &nstead. most often. we make no choice at a**. >e fa** (ack on the defa)*t. and the defa)*t is: %o omething. &s there any way o)t of thisF &n *ate 200I. e3ec)ti2es at Aetna. the ins)rance company. started an e3periment. -hey knew that on*y a sma** percentage of the termina**y i** e2er ha*ted efforts at c)rati2e treatment and enro**ed in hospice. and that. when they did. it was )s)a**y not )nti* the 2ery end. o Aetna decided to *et a gro)p of po*icyho*ders with a *ife e3pectancy of *ess than a year recei2e hospice ser2ices without forgoing other treatments. A patient *ike ara #onopo*i co)*d contin)e to try chemotherapy and radiation. and go to the hospita* when she wished6()t a*so ha2e a hospice team at home foc)ssing on what she needed for the (est possi(*e *ife now and for that morning when she might wake )p )na(*e to (reathe. A two1 year st)dy of this ;conc)rrent care= program fo)nd that enro**ed patients were m)ch more *ike*y to )se hospice: the fig)re *eaped from twenty1si3 per cent to se2enty per cent. -hat was no s)rprise. since they weren5t forced to gi2e )p anything. -he s)rprising res)*t was that they did gi2e )p things. -hey 2isited the emergency room a*most ha*f as often as the contro* patients did. -heir )se of hospita*s and &.'.,.s dropped (y more than two1thirds. !2er1a** costs fe** (y a*most a 8)arter. -his was st)nning. and p)DD*ing: it wasn5t o(2io)s what made the approach work. Aetna ran a more modest conc)rrent1care program for a (roader gro)p of termina**y i** patients. "or these patients. the traditiona* hospice r)*es app*ied6in order to 8)a*ify for home hospice. they had to gi2e )p attempts at c)rati2e treatment. ?)t. either way. they recei2ed phone ca**s from pa**iati2e1care n)rses who offered to check in reg)*ar*y and he*p them find ser2ices for anything from pain contro* to making o)t a *i2ing wi**. "or these patients. too. hospice enro**ment A)mped to se2enty per cent. and their )se of hospita* ser2ices dropped sharp*y. Among e*der*y patients. )se of intensi2e1care )nits fe** (y more than eighty1 fi2e per cent. atisfaction scores went way )p. >hat was going on hereF -he program5s *eaders had the impression that they had simp*y gi2en patients someone e3perienced and know*edgea(*e to ta*k to a(o)t their dai*y needs. And somehow that was eno)gh6A)st ta*king. -he e3p*anation strains credi(i*ity. ()t e2idence for it has grown in recent years. -wo1thirds of the termina*1cancer patients in the 'oping with 'ancer st)dy reported ha2ing had no Acesso em 12/05/2011 1G

disc)ssion with their doctors a(o)t their goa*s for end1of1*ife care. despite (eing. on a2erage. A)st fo)r months from death. ?)t the third who did were far *ess *ike*y to )ndergo cardiop)*monary res)scitation or (e p)t on a 2enti*ator or end )p in an intensi2e1care )nit. -wo1thirds enro**ed in hospice. -hese patients s)ffered *ess. were physica**y more capa(*e. and were (etter a(*e. for a *onger period. to interact with others. #oreo2er. si3 months after the patients died their fami*y mem(ers were m)ch *ess *ike*y to e3perience persistent maAor depression. &n other words. peop*e who had s)(stanti2e disc)ssions with their doctor a(o)t their end1of1*ife preferences were far more *ike*y to die at peace and in contro* of their sit)ation. and to spare their fami*y ang)ish. 'an mere disc)ssions rea**y do so m)chF 'onsider the case of La 'rosse. >isconsin. &ts e*der*y residents ha2e )n)s)a**y *ow end1of1*ife hospita* costs. %)ring their *ast si3 months. according to #edicare data. they spend ha*f as many days in the hospita* as the nationa* a2erage. and there5s no sign that doctors or patients are ha*ting care premat)re*y. %espite a2erage rates of o(esity and smoking. their *ife e3pectancy o)tpaces the nationa* mean (y a year. & spoke to %r. +regory -hompson. a critica*1care specia*ist at +)ndersen L)theran 4ospita*. whi*e he was on &.'.,. d)ty one recent e2ening. and he ran thro)gh his *ist of patients with me. &n most respects. the patients were *ike those fo)nd in any &.'.,.6terri(*y sick and *i2ing thro)gh the most peri*o)s days of their *i2es. -here was a yo)ng woman with m)*tip*e organ fai*)re from a de2astating case of pne)monia. a man in his mid1si3ties with a r)pt)red co*on that had ca)sed a rampaging infection and a heart attack. Het these patients were comp*ete*y different from those in other &.'.,.s &5d seen: none had a termina* diseaseE none (att*ed the fina* stages of metastatic cancer or )ntreata(*e heart fai*)re or dementia. -o )nderstand La 'rosse. -hompson said. yo) had to go (ack to 1JJ1. when *oca* medica* *eaders headed a systematic campaign to get physicians and patients to disc)ss end1of1*ife wishes. >ithin a few years. it (ecame ro)tine for a** patients admitted to a hospita*. n)rsing home. or assisted1*i2ing faci*ity to comp*ete a m)*tip*e1choice form that (oi*ed down to fo)r cr)cia* 8)estions. At this moment in yo)r *ife. the form asked: 1. %o yo) want to (e res)scitated if yo)r heart stopsF 2. %o yo) want aggressi2e treatments s)ch as int)(ation and mechanica* 2enti*ationF G. %o yo) want anti(ioticsF I. %o yo) want t)(e or intra2eno)s feeding if yo) can5t eat on yo)r ownF ?y 1JJN. eighty1fi2e per cent of La 'rosse residents who died had written ad2anced directi2es. )p from fifteen per cent. and doctors a*most a*ways knew of and fo**owed the instr)ctions. 4a2ing this system in p*ace. -hompson said. has made his Ao( 2ast*y easier. ?)t it5s not (eca)se the specifics are spe**ed o)t for him e2ery time a sick patient arri2es in his )nit. ;-hese things are not *aid o)t in stone.= he to*d me. >hate2er the yes/no answers peop*e may p)t on a piece of paper. one wi** find n)ances and comp*e3ities in what they mean. ;?)t. instead of ha2ing the disc)ssion when they get to the &.'.,.. we find many times it has a*ready taken p*ace.= Answers to the *ist of 8)estions change as patients go from entering the hospita* for the de*i2ery of a chi*d to entering for comp*ications of A*Dheimer5s disease. ?)t. in La 'rosse. the system means that peop*e are far more *ike*y to ha2e ta*ked a(o)t what they want and what they don5t want (efore they and their re*ati2es find themse*2es in the throes of crisis and fear. >hen wishes aren5t c*ear. -hompson said. ;fami*ies ha2e a*so (ecome m)ch more recepti2e to ha2ing the disc)ssion.= -he disc)ssion. not the *ist. was what mattered most. %isc)ssion Acesso em 12/05/2011 1I

had (ro)ght La 'rosse5s end1of1*ife costs down to A)st o2er ha*f the nationa* a2erage. &t was that simp*e 6and that comp*icated. !ne at)rday morning *ast winter. & met with a woman & had operated on the night (efore. he had (een )ndergoing a proced)re for the remo2a* of an o2arian cyst when the gyneco*ogist who was operating on her disco2ered that she had metastatic co*on cancer. & was s)mmoned. as a genera* s)rgeon. to see what co)*d (e done. & remo2ed a section of her co*on that had a *arge cancero)s mass. ()t the cancer had a*ready spread wide*y. & had not (een a(*e to get it a**. Now & introd)ced myse*f. he said a resident had to*d her that a t)mor was fo)nd and part of her co*on had (een e3cised. Hes. & said. &5d (een a(*e to take o)t ;the main area of in2o*2ement.= & e3p*ained how m)ch (owe* was remo2ed. what the reco2ery wo)*d (e *ike6e2erything e3cept how m)ch cancer there was. ?)t then & remem(ered how timid &5d (een with ara #onopo*i. and a** those st)dies a(o)t how m)ch doctors (eat aro)nd the ()sh. o when she asked me to te** her more a(o)t the cancer. & e3p*ained that it had spread not on*y to her o2aries ()t a*so to her *ymph nodes. & said that it had not (een possi(*e to remo2e a** the disease. ?)t & fo)nd myse*f a*most immediate*y minimiDing what &5d said. ;>e5** (ring in an onco*ogist.= & hastened to add. ;'hemotherapy can (e 2ery effecti2e in these sit)ations.= he a(sor(ed the news in si*ence. *ooking down at the (*ankets drawn o2er her m)tino)s (ody. -hen she *ooked )p at me. ;Am & going to dieF= & f*inched. ;No. no.= & said. ;!f co)rse not.= A few days *ater. & tried again. ;>e don5t ha2e a c)re.= & e3p*ained. ;?)t treatment can ho*d the disease down for a *ong time.= -he goa*. & said. was to ;pro*ong yo)r *ife= as m)ch as possi(*e. &52e seen her reg)*ar*y in the months since. as she em(arked on chemotherapy. he has done we**. o far. the cancer is in check. !nce. & asked her and her h)s(and a(o)t o)r initia* con2ersations. -hey don5t remem(er them 2ery fond*y. ;-hat one phrase that yo) )sed6@pro*ong yo)r *ife56it A)st . . .= he didn5t want to so)nd critica*. ;&t was kind of (*)nt.= her h)s(and said. ;&t so)nded harsh.= she echoed. he fe*t as if &5d dropped her off a c*iff. & spoke to %r. )san ?*ock. a pa**iati2e1care specia*ist at my hospita* who has had tho)sands of these diffic)*t con2ersations and is a nationa**y recogniDed pioneer in training doctors and others in managing end1of1*ife iss)es with patients and their fami*ies. ;Ho) ha2e to )nderstand.= ?*ock to*d me. ;A fami*y meeting is a proced)re. and it re8)ires no *ess ski** than performing an operation.= !ne (asic mistake is concept)a*. "or doctors. the primary p)rpose of a disc)ssion a(o)t termina* i**ness is to determine what peop*e want6whether they want chemo or not. whether they want to (e res)scitated or not. whether they want hospice or not. -hey foc)s on *aying o)t the facts and the options. ?)t that5s a mistake. ?*ock said. ;A *arge part of the task is he*ping peop*e negotiate the o2erwhe*ming an3iety6an3iety a(o)t death. an3iety a(o)t s)ffering. an3iety a(o)t *o2ed ones. an3iety a(o)t finances.= she e3p*ained. ;-here are many worries and rea* terrors.= No one con2ersation can address them a**. Arri2ing at an acceptance of one5s morta*ity and a c*ear )nderstanding of the *imits and the possi(i*ities of medicine is a process. not an epiphany. -here is no sing*e way to take peop*e with termina* i**ness thro)gh the process. ()t. according to ?*ock. there are some r)*es. Ho) sit down. Ho) make time. Ho)5re not determining whether they want treatment 0 2ers)s H. Ho)5re trying to *earn what5s most important to them )nder the circ)mstances6 so that yo) can pro2ide information and ad2ice on the approach that gi2es them the (est chance of achie2ing it. -his re8)ires as m)ch Acesso em 12/05/2011 15

*istening as ta*king. &f yo) are ta*king more than ha*f of the time. ?*ock says. yo)5re ta*king too m)ch. -he words yo) )se matter. According to e3perts. yo) sho)*dn5t say. ;&5m sorry things t)rned o)t this way.= for e3amp*e. &t can so)nd *ike pity. Ho) sho)*d say. ;& wish things were different.= Ho) don5t ask. ;>hat do yo) want when yo) are dyingF= Ho) ask. ;&f time (ecomes short. what is most important to yo)F= ?*ock has a *ist of items that she aims to co2er with termina* patients in the time (efore decisions ha2e to (e made: what they )nderstand their prognosis to (eE what their concerns are a(o)t what *ies aheadE whom they want to make decisions when they can5tE how they want to spend their time as options (ecome *imitedE what kinds of trade1offs they are wi**ing to make. -en years ago. her se2enty1fo)r1year1o*d father. 9ack ?*ock. a professor emerit)s of psycho*ogy at the ,ni2ersity of 'a*ifornia at ?erke*ey. was admitted to a an "rancisco hospita* with symptoms from what pro2ed to (e a mass growing in the spina* cord of his neck. he f*ew o)t to see him. -he ne)ros)rgeon said that the proced)re to remo2e the mass carried a twenty1per1cent chance of *ea2ing him 8)adrip*egic. para*yDed from the neck down. ?)t witho)t it he had a h)ndred1per1cent chance of (ecoming 8)adrip*egic. -he e2ening (efore s)rgery. father and da)ghter chatted a(o)t friends and fami*y. trying to keep their minds off what was to come. and then she *eft for the night. 4a*fway across the ?ay ?ridge. she reca**ed. ;& rea*iDed. @!h. my +od. & don5t know what he rea**y wants.5 = 4e5d made her his hea*th1care pro3y. ()t they had ta*ked a(o)t s)ch sit)ations on*y s)perficia**y. o she t)rned the car aro)nd. +oing (ack in ;was rea**y )ncomforta(*e.= she said. &t made no difference that she was an e3pert in end1of1*ife disc)ssions. ;& A)st fe*t awf)* ha2ing the con2ersation with my dad.= ?)t she went thro)gh her *ist. he to*d him. ; @& need to )nderstand how m)ch yo)5re wi**ing to go thro)gh to ha2e a shot at (eing a*i2e and what *e2e* of (eing a*i2e is to*era(*e to yo).5 >e had this 8)ite agoniDing con2ersation where he said6and this tota**y shocked me6@>e**. if &5m a(*e to eat choco*ate ice cream and watch foot(a** on -C. then &5m wi**ing to stay a*i2e. &5m wi**ing to go thro)gh a *ot of pain if & ha2e a shot at that.5 ;& wo)*d ne2er ha2e e3pected him to say that.= ?*ock went on. ;& mean. he5s a professor emerit)s. 4e5s ne2er watched a foot(a** game in my conscio)s memory. -he who*e pict)re6it wasn5t the g)y & tho)ght & knew.= ?)t the con2ersation pro2ed critica*. (eca)se after s)rgery he de2e*oped (*eeding in the spina* cord. -he s)rgeons to*d her that. in order to sa2e his *ife. they wo)*d need to go (ack in. ?)t he had a*ready (ecome near*y 8)adrip*egic and wo)*d remain se2ere*y disa(*ed for many months and possi(*y fore2er. >hat did she want to doF ;& had three min)tes to make this decision. and. & rea*iDed. he had a*ready made the decision.= he asked the s)rgeons whether. if her father s)r2i2ed. he wo)*d sti** (e a(*e to eat choco*ate ice cream and watch foot(a** on -C. Hes. they said. he ga2e the !.<. to take him (ack to the operating room. ;&f & had not had that con2ersation with him.= she to*d me. ;my instinct wo)*d ha2e (een to *et him go at that moment. (eca)se it A)st seemed so awf)*. And & wo)*d ha2e (eaten myse*f )p. %id & *et him go too soonF= !r she might ha2e gone ahead and sent him to s)rgery. on*y to find6as occ)rred6that he s)r2i2ed on*y to go thro)gh what pro2ed to (e a year of ;2ery horri(*e reha(= and disa(i*ity. ;& wo)*d ha2e fe*t so g)i*ty that & condemned him to that.= she said. ;?)t there was no decision for me to make.= 4e had decided. %)ring the ne3t two years. he regained the a(i*ity to wa*k short distances. 4e re8)ired caregi2ers to (athe and dress him. 4e had diffic)*ty swa**owing and eating. ?)t his mind was intact and he had partia* )se of his hands6eno)gh to write two (ooks and more than a doDen scientific artic*es. 4e *i2ed for ten years after the operation. -his past year. howe2er. his Acesso em 12/05/2011 1N

diffic)*ties with swa**owing ad2anced to the point where he co)*d not eat witho)t aspirating food partic*es. and he cyc*ed (etween hospita* and reha(i*itation faci*ities with the pne)monias that res)*ted. 4e didn5t want a feeding t)(e. And it (ecame e2ident that the (att*e for the dwind*ing chance of a mirac)*o)s reco2ery was going to *ea2e him )na(*e e2er to go home again. o. this past 9an)ary. he decided to stop the (att*e and go home. ;>e started him on hospice care.= ?*ock said. ;>e treated his choking and kept him comforta(*e. $2ent)a**y. he stopped eating and drinking. 4e died a(o)t fi2e days *ater.= )san ?*ock and her father had the con2ersation that we a** need to ha2e when the chemotherapy stops working. when we start needing o3ygen at home. when we face high1risk s)rgery. when the *i2er fai*)re keeps progressing. when we (ecome )na(*e to dress o)rse*2es. &52e heard wedish doctors ca** it a ;(reakpoint disc)ssion.= a systematic series of con2ersations to sort o)t when they need to switch from fighting for time to fighting for the other things that peop*e 2a*)e6(eing with fami*y or tra2e**ing or enAoying choco*ate ice cream. "ew peop*e ha2e this disc)ssion. and there is good reason for anyone to dread these con2ersations. -hey can )n*eash diffic)*t emotions. Beop*e can (ecome angry or o2erwhe*med. 4and*ed poor*y. the con2ersations can cost a person5s tr)st. 4and*ed we**. they can take rea* time. & spoke to an onco*ogist who to*d me a(o)t a twenty1nine1year1o*d patient she had recent*y cared for who had an inopera(*e (rain t)mor that contin)ed to grow thro)gh second1*ine chemotherapy. -he patient e*ected not to attempt any f)rther chemotherapy. ()t getting to that decision re8)ired ho)rs of disc)ssion6for this was not the decision he had e3pected to make. "irst. the onco*ogist said. she had a disc)ssion with him a*one. -hey re2iewed the story of how far he5d come. the options that remained. he was frank. he to*d him that in her entire career she had ne2er seen third1*ine chemotherapy prod)ce a significant response in his type of (rain t)mor. he had *ooked for e3perimenta* therapies. and none were tr)*y promising. And. a*tho)gh she was wi**ing to proceed with chemotherapy. she to*d him how m)ch strength and time the treatment wo)*d take away from him and his fami*y. 4e did not sh)t down or re(e*. 4is 8)estions went on for an ho)r. 4e asked a(o)t this therapy and that therapy. And then. grad)a**y. he (egan to ask a(o)t what wo)*d happen as the t)mor got (igger. the symptoms he5d ha2e. the ways they co)*d try to contro* them. how the end might come. -he onco*ogist ne3t met with the yo)ng man together with his fami*y. -hat disc)ssion didn5t go so we**. 4e had a wife and sma** chi*dren. and at first his wife wasn5t ready to contemp*ate stopping chemo. ?)t when the onco*ogist asked the patient to e3p*ain in his own words what they5d disc)ssed. she )nderstood. &t was the same with his mother. who was a n)rse. #eanwhi*e. his father sat 8)iet*y and said nothing the entire time. A few days *ater. the patient ret)rned to ta*k to the onco*ogist. ;-here sho)*d (e something. -here must (e something.= he said. 4is father had shown him reports of c)res on the &nternet. 4e confided how (ad*y his father was taking the news. No patient wants to ca)se his fami*y pain. According to ?*ock. a(o)t two1thirds of patients are wi**ing to )ndergo therapies they don5t want if that is what their *o2ed ones want. -he onco*ogist went to the father5s home to meet with him. 4e had a sheaf of possi(*e tria*s and treatments printed from the &nternet. he went thro)gh them a**. he was wi**ing to change her opinion. she to*d him. ?)t either the treatments were for (rain t)mors that were 2ery different from his son5s or e*se he didn5t 8)a*ify. None were going to (e mirac)*o)s. he to*d the father that he needed to )nderstand: time with his son was *imited. and the yo)ng man was going to need his father5s he*p getting thro)gh it. Acesso em 12/05/2011 1:

-he onco*ogist noted wry*y how m)ch easier it wo)*d ha2e (een for her A)st to prescri(e the chemotherapy. ;?)t that meeting with the father was the t)rning point.= she said. -he patient and the fami*y opted for hospice. -hey had more than a month together (efore he died. Later. the father thanked the doctor. -hat *ast month. he said. the fami*y simp*y foc)ssed on (eing together. and it pro2ed to (e the most meaningf)* time they5d e2er spent. +i2en how pro*onged some of these con2ersations ha2e to (e. many peop*e arg)e that the key pro(*em has (een the financia* incenti2es: we pay doctors to gi2e chemotherapy and to do s)rgery. ()t not to take the time re8)ired to sort o)t when doing so is )nwise. -his certain*y is a factor. L-he new hea*th1reform act was to ha2e added #edicare co2erage for these con2ersations. )nti* it was deemed f)nding for ;death pane*s= and stripped o)t of the *egis*ation.M ?)t the iss)e isn5t mere*y a matter of financing. &t arises from a sti** )nreso*2ed arg)ment a(o)t what the f)nction of medicine rea**y is6 what. in other words. we sho)*d and sho)*d not (e paying for doctors to do. -he simp*e 2iew is that medicine e3ists to fight death and disease. and that is. of co)rse. its most (asic task. %eath is the enemy. ?)t the enemy has s)perior forces. $2ent)a**y. it wins. And. in a war that yo) cannot win. yo) don5t want a genera* who fights to the point of tota* annihi*ation. Ho) don5t want ')ster. Ho) want 7o(ert $. Lee. someone who knew how to fight for territory when he co)*d and how to s)rrender when he co)*dn5t. someone who )nderstood that the damage is greatest if a** yo) do is fight to the (itter end. #ore often. these days. medicine seems to s)pp*y neither ')sters nor Lees. >e are increasing*y the genera*s who march the so*diers onward. saying a** the whi*e. ;Ho) *et me know when yo) want to stop.= A**1o)t treatment. we te** the termina**y i**. is a train yo) can get off at any time6A)st say when. ?)t for most patients and their fami*ies this is asking too m)ch. -hey remain ri2en (y do)(t and fear and desperationE some are de*)ded (y a fantasy of what medica* science can achie2e. ?)t o)r responsi(i*ity. in medicine. is to dea* with h)man (eings as they are. Beop*e die on*y once. -hey ha2e no e3perience to draw )pon. -hey need doctors and n)rses who are wi**ing to ha2e the hard disc)ssions and say what they ha2e seen. who wi** he*p peop*e prepare for what is to come6and to escape a wareho)sed o(*i2ion that few rea**y want. ara #onopo*i had had eno)gh disc)ssions to *et her fami*y and her onco*ogist know that she did not want hospita*s or &.'.,.s at the end6()t not eno)gh to ha2e *earned how to achie2e this. "rom the moment she arri2ed in the emergency room that "riday morning in "e(r)ary. the train of e2ents ran against a peacef)* ending. -here was one person who was dist)r(ed (y this. tho)gh. and who fina**y decided to intercede6'h)ck #orris. her primary physician. As her i**ness had progressed thro)gh the pre2io)s year. he had *eft the decision1making *arge*y to ara. her fami*y. and the onco*ogy team. ti**. he had seen her and her h)s(and reg)*ar*y. and *istened to their concerns. -hat desperate morning. #orris was the one person 7ich ca**ed (efore getting into the am()*ance. 4e headed to the emergency room and met ara and 7ich when they arri2ed. #orris said that the pne)monia might (e treata(*e. ?)t. he to*d 7ich. ;&5m worried this is it. &5m rea**y worried a(o)t her.= And he to*d him to *et the fami*y know that he said so. ,pstairs in her hospita* room. #orris ta*ked with ara and 7ich a(o)t the ways in which the cancer had (een weakening her. making it hard for her (ody to fight off infection. $2en if the anti(iotics ha*ted the infection. he said. he wanted them to remem(er that there was nothing that wo)*d stop the cancer. ara *ooked ghast*y. #orris to*d me. ; he was so short of (reath. &t was )ncomforta(*e to watch. & sti** remem(er the attending=6the onco*ogist who admitted her for the pne)monia treatment. ;4e was act)a**y kind of ratt*ed a(o)t the who*e case. and for him to (e ratt*ed is saying something.= Acesso em 12/05/2011 18

After her parents arri2ed. #orris ta*ked with them. too. and when they were finished ara and her fami*y agreed on a p*an. -he medica* team wo)*d contin)e the anti(iotics. ?)t if things got worse they wo)*d not p)t her on a (reathing machine. -hey a*so *et him ca** the pa**iati2e1care team to 2isit. -he team prescri(ed a sma** dose of morphine. which immediate*y eased her (reathing. 4er fami*y saw how m)ch her s)ffering diminished. and s)dden*y they didn5t want any more s)ffering. -he ne3t morning. they were the ones to ho*d (ack the medica* team. ;-hey wanted to p)t a catheter in her. do this other st)ff to her.= her mother. %awn. to*d me. ;& said. @No. Ho) aren5t going to do anything to her.5 & didn5t care if she wet her (ed. -hey wanted to do *a( tests. (*ood1press)re meas)rements. finger sticks. & was 2ery )ninterested in their (ookkeeping. & went o2er to see the head n)rse and to*d them to stop.= &n the pre2io)s three months. a*most nothing we5d done to ara6none of o)r chemotherapy and scans and tests and radiation6had *ike*y achie2ed anything e3cept to make her worse. he may we** ha2e *i2ed *onger witho)t any of it. At *east she was spared at the 2ery end. -hat day. ara fe** into )nconscio)sness as her (ody contin)ed to fai*. -hro)gh the ne3t night. 7ich reca**ed. ;there was this awf)* groaning.= -here is no prettifying death. ;>hether it was with inha*ing or e3ha*ing. & don5t remem(er. ()t it was horri(*e. horri(*e. horri(*e to *isten to.= 4er father and her sister sti** tho)ght that she might ra**y. ?)t when the others had stepped o)t of the room. 7ich kne*t down weeping (eside ara and whispered in her ear. ;&t5s !.<. to *et go.= he said. ;Ho) don5t ha2e to fight anymore. & wi** see yo) soon.= Later that morning. her (reathing changed. s*owing. At J:I5 A.#.. 7ich said. ; ara A)st kind of start*ed. he *et a *ong (reath o)t. -hen she A)st stopped.= B4!-!+7AB4: B4&LL&B -!L$%AN!. ;?&7-4%AH ?ALL!!N.= "7!# ;%AH >&-4 #H "A-4$7= L2008M 7ead more printa(*ePtr)eQi3DD1#<AB?rim