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A KINDER, GENTLER DEATH The American Way of Death: Most Americans say their wish is to die at home, surrounded

by family. The reality is that three-fourths die in institutions, surrounded by strangers. It doesn't ha e to be that way !"#I$T% !$&T$M'$( )*, +,,, -".. )/0 1". )+ A 2inder, 3entler Death '% 4"51 #."6D Dying is one of the few e ents in life certain to occur--and yet one we are not li7ely to 8lan for. We will s8end more time getting ready for two wee7s away from wor7 than we will for our last two wee7s on earth. #onse9uently, says :ran7 "staces7i, who runs a !an :rancisco home for the dying, ;we ha e more 8re8aration for how to o8erate our -#(s than we do for how to die.; 'ut as Moliere <o7ed, ;We die only once--and for so long=; !o we should choose to die well. Too many of us don't. According to a new TIM$>#11 8oll, ? out of ), Americans say they want to die at home@ instead, three-fourths die in medical institutions. More than a third of dying 8eo8le s8end at least ), days in intensi e-care units, where they often endure torturous Agenerally futileB attem8ts at a cure. !8ecialists say C/D of 8ain in terminally ill 8eo8le can be mollified, but studies show that nearly half of Americans die in 8ain, surrounded and treated by strangers. A recent sur ey found that E out of / 8hysicians treating dying 8atients had 7nown them less than a wee7. We 8lan assiduously for retirement. %et about a third of Americans ban7ru8t their families in the 8rocess of dying. !ometimes they don't want all the

I-s and monitors and bills yet suffer them anyway. $ en in )CC?, E, years after the first li ing will was written in the 6.!. to 8re ent o ertreatment, ) in ), dying Americans said in a sur ey that his wishes were ignored. Too often, in the words of the (e . 3eorge #aldwell, who ministers to the dying in -irginia, 8eo8le die in ;the final, tiny, hel8less cosmos of a hos8ital bed.; !ince )C?/, when 2aren Ann Fuinlan's father went to the 1ew 4ersey courts to get her res8irator turned off, the debate o er dying in America has focused on a narrow 9uestion: Is there a right to dieG 'ut that struggle, so agoniHing and dramatic, o ershadows 8ractical 9uestions that will 8ro e more im8ortant for most of us: 5ow will we die, and can we die more comfortablyG A grou8 of reform-minded 8hysicians, caregi ers and academics ho8es to change the way doctors a88roach dying. They want all of us to discuss it sooner, so that no one faces a 2e or7ian moment. ;"ur eI8ectations as a culture for end-of-life care are too low,; says Dr. Ira 'yoc7, author of Dying Well: &eace and &ossibilities at the $nd of .ife. 5e thin7s the assisted-suicide debate misses the 8oint: ;Doctors s8end )+ minutes with you, e en if you ha e a serious illness. !o we only ha e a cou8le minutes to listen to your dee8est fears, but we're going to gi e you the blac7 8illG; It may be a 8ro8itious moment for reform. Those who bore the baby boomers are nearing their end. .i7e e erything else they ha e come across and disli7ed, boomers are ta7ing note of the ways in which their 8arents are dying--and trying to do something about it. The growing mo ement to im8ro e the way we die is the sub<ect of the s8ecial re8ort that follows and a se8arate documentary, created by 'ill and 4udith Moyers, airing this wee7 on &'!. A!ee story on 8age ?J.B These are the stories of

8eo8le who ha e managed to die more comfortably, who ha e demanded better care from their doctors, who ha e tal7ed about what's neIt with their families. If they are luc7y, they ha e disco ered how to cast some light o er the shadow of death, in s8ite of a system that cons8ires against dying well. %ou would thin7 'ob #ummins would ha e had the most attenti e health care as he neared the end of his battle with 8rostate cancer. The former lawyer was being treated in two of the best hos8itals in 1ew %or7 #ity. 5e wasn't fabulously wealthy@ he had de oted most of his time to 8roducing <aHH records, which aren't big moneyma7ers. 'ut at age 0C, #ummins had a nest egg. Many cancer 8atients eI8erience horrible 8ain near death, and e en the best oncologists don't always 7now how to ease it. ;I got the usual--'.oad 'em with codeine'--and I couldn't focus across the room,; #ummins recalled. The drugs sa88ed his will to do anything but stare at 2nic7s games. A friend who also has cancer 8honed one day to as7 if he had tried any new treatments. 1o. ;It hit me,; #ummins said later, wee8ing at the memory. ;I had <ust gi en u8.; 5e sought out a 8ain s8ecialist and e entually found the de8artment of 8ain medicine and 8alliati e care at 'eth Israel Medical #enter in Manhattan, one of only a handful of such facilities in the 6.!. Dr. .auren !haio a 8rescribed fentanyl, a stronger 8ain medication that made #ummins comfortable but not cloudy. :inally, his agony and fog lifted. ;We call her our angel,; said 1ancy, 'ob's wife, of !haio a. 'ut she was only 8racticing basic 8ain management, using readily a ailable drugs. ;Most docs <ust say, 'There's nothing more we can do,'; laments !haio a. ;I tell them, 'I can acti ely treat your 8ain.';

Many doctors flinch at using controlled substances because of the nation's harsh antidrug laws. A )CC* sur ey of 1ew %or7 !tate 8hysicians found that ?)D chose a drug that did not re9uire a tri8licate form--necessary for dis8ensing many controlled substances such as fentanyl--e en when the controlled drug was the a88ro8riate treatment. Instead they regularly choose wea7er medications because they fear legal scrutiny. Many 8hysicians are also erroneously worried that they will addict 8atients or e en 7ill them. .ast year 2athleen :oley, another 1ew %or7 #ity 8ain s8ecialist, released a study showing that J,D of her fellow neurologists wrongly belie ed that using a dose of mor8hine big enough to control breathlessness would actually euthaniHe the 8atient. AIn truth, there's no ceiling dose of mor8hine, as long as the 8atient is gi en time to ad<ust.B 'arbara !trong, /C, suffered because of such ignorance. Miami doctors refused the former nurse's 8leas for medication when horrific cancer 8ain struc7. After !trong rebelled and found a 8ain s8ecialist, her regular doctor ;went wac7o...5e said I would become addicted.; !o !trong stayed with the oncologist@ e entually her 8ain got so awful she could barely mo e. ;I wanted to be dead,; she says. As a #hristian, !trong couldn't go through with actually 7illing herself, but she did consider an alternati e: ;4ac7 2e or7ian, where are youG; Instead, !trong dum8ed her doctor and called Dr. &amela !utton, the s8ecialist who had hel8ed her before. !oon she was bac7 on the golf course. !he could 8lay until recently, when her condition slid. ;I wouldn't be ali e today if not for &am !utton,; she says. !trong is fortunate to ha e sought hel8. Many don't, for a misguided reason: *+D of res8ondents in one study agreed with a 8ollster that ;it is easy to become too reliant on 8ain

medication.; In fact, fewer than )D of those treated with o8ioids become addicted. #ummins, too, im8ro ed. 5e and his wife were able to meet the emotional challenges of terminal illness without the 8hysical demands of agony. They listened to <aHH@ she offered s8iritual guidance@ they continued to decorate their $ast 5arlem a8artment with mosaics. ;The 9uality of my life definitely im8ro ed,; #ummins said, ;and that goes hand in hand with 8rolonging it.; $ en his oncologist enthusiastically welcomed !haio a's 8ain treatment. ;5e's ha88y about it,; #ummins said. ;5e's a great doctor, but he's <ust not trained in 8ain management.; Most aren't. Medical schools ha e only <ust begun to introduce curriculums in managing 8ain and other sym8toms of the dying. The sub<ects are difficult to teach because most 8rofessors don't 7now the material, and most teItboo7s say little about end-of-life care. It wasn't until )CC? that the American Medical Association began de elo8ing a continuing-education 8ac7et for doctors on the sub<ect. The grou8 that accredits hos8itals began re9uiring them to im8lement 8ain-management 8lans only this year. ;In the 8ast few years, we ha e seen a sea change of im8ro ements in the issue,; says :oley, ;but we' e 7nown how to do this since )C?/.; Managing 8ain better would allow 8atients more comfortable deaths, but it can't guarantee easier ones. ;When it comes to dying, 8ain comes in many fla ors,; says (obert Wrenn, who recently retired after +J years of teaching about the 8sychology of dying at the 6ni ersity of AriHona. ;!8iritual 8ain, social 8ain, e en the unfinished-business 8ain that as7s, 'Why am I hereG'; "nly the cree8y would say dying should be cause to re<oice, and only the idealistic would say the health-care system could change our attitudes about it. 'ut 'yoc7, author of

Dying Well, notes that dying's 8lace in our culture has changed before. 6ntil recently, most 8eo8le died at home, because doctors couldn't do much. ;!ince the era when antibiotics were in ented and surgery began to be safe, in the 'E,s, the focus has become to combat disease. The sub<ect of the 8atient has too often been lost,; says 'yoc7. As dying was medicaliHed, it was remo ed from our li es - to the I#6 and the funeral home - both fairly new institutions if you consider how long 8eo8le ha e been dying. Dislodged by modernity, dying became a taboo, slightly gross sub<ect for 8olite con ersation. &hysicians and the families of their 8atients began to see death as a defeat, not an ine itable culmination. ;We need education,; says Dr. 2erry #ranmer of the American Medical Directors Association. ;Instead surgeons get together when a 8atient dies to find out who screwed u8.; Which isn't to blame doctors alone. Americans as a whole ha e a hard time discussing dying - e en those who ha e 8lanned for it. According to the TIM$>#11 8oll, //D of those o er 0/ now ha e an ;ad ance directi e,; a legal document that lays out what sort of care they want before death. This number has ne er been higher. 'ut only 0D of those wor7ed with a doctor to write the document@ other 8olls ha e shown that ery few 8eo8le e en tell their doctors they ha e ad ance directi es. In addition, a study found that although many Americans legally designate someone else to ma7e medical decisions after they are unable to, E,D of those who ha e been designated don't 7now they ha e been 8ic7ed. $ en our faith leaders, the 8eo8le many of us see7 out for guidance near the end, ha e a hard time gi ing it. ;The truth is, clergy are fre9uently not comfortable with end-of-life care,; says 2eith Meador, Du7e 6ni ersity 8rofessor of theology and medicine. A re8ort found that one-third of clergy members had no training to hel8 dying 8eo8le.

The reformers ho8e to begin a new dialogue about dying, one that integrates its enlightening 8otential. !ays 'yoc7: ;Dying 8eo8le ha e the chance to say what matters most, renew s8irituality, com8lete relationshi8s...It's not fun, not 8retty, and I don't want to romanticiHe it, but, gee, it's not without some alue.; In a society that hides dying, howe er, it's often hard to see that alue. .ast year, retired 1ew %or7 8sychologist :elice 3ans, ?+, was diagnosed with incurable 8ancreatic cancer. !he was originally told she had two months, but she has li ed more than a year. A!uch im8recision is common. A 6ni ersity of #hicago study found recently that only +,D of 8hysicians' 8redictions of sur i al were accurate.B !o uncertainty colors 3ans' life - will she be able to ta7e a long-8lanned train tri8 this month through the (oc7iesG Many days bring ;star7 terror... I sometimes wish that I had a belief system,; she sobs. ;Then I feel li7e I'm two years old, and I ha e no control. I s8end 8art of e ery day mourning my own death.; And yet 3ans, who ne er married, doesn't ha e anyone to hel8 guide her. Though she li7es her doctor as an oncologist, he is fairly bris7 during their a88ointments, as 5M"-era doctors must be. $ en when she was first told she had a terminal illness, the doctor and staff ga e little comfort. ;They don't want you crying,; 3ans says. A nurse had two words for her: ;#alm down.; $ entually 3ans found a su88ort grou8, 3ilda's #lub, named for comedian 3ilda (adner, who died of o arian cancer. When 3ans arri ed for the first meeting, she saw that it was called a ;wellness grou8.; 'ut what she needed was a chance to discuss the reality of her im8ending death - her frail a88earance, the sheer mundanity of her days. ;I'm not into tal7ing about, 'Maybe they're going to find a drug for me,'; she eI8lained.

!o how do we fiI these 8roblemsG The first ste8, say the reformers, is to change the way we thin7 about the end. ;It's not about death,; says 4oanne .ynn, director of the (A1D #enter to Im8ro e #are of the Dying. ;It's really about li ing with a disease that's going to 7ill you, about good li ing on the way to death. We s8end as much time with our fatal illness as we s8end as toddlers.; #hanging attitudes means getting more 8eo8le to gi e u8 rescue medicine in fa or of comfort care when the ho8e of a cure is minuscule. ;:or many 8eo8le, it's easier to say, 'Whate er you say, Doc,' rather than s8end two wee7s thin7ing through your own death,; says .ynn. ;That's uncomfortable. 'ut life is mostly about grandchildren and gardening, sunrises and eating chocolate. It's not about 8ills.; :ine, but how do you eat a 5ershey bar when you 7now it could be your lastG "ne solution is hos8ice, a 7ind of care for the dying that em8hasiHes comfort o er cure. 5os8ice 8atients must forgo further curati e and life8rolonging treatments, which means they usually lea e the hos8ital. AA hos8ice can be a se8arate 8lace, but usually the word refers to home care.B Doctors, social wor7ers, art thera8ists and others manage 8hysical 8ain and hel8 8atients na igate the emotional terrain of dying. When 4ohn Wracian, *,, was first diagnosed with colon cancer last year, the former 3eneral Motors su8er isor from Downey, #alif., underwent surgery. 'ut when it didn't wor7, he acce8ted that chemothera8y 8robably wouldn't either. Instead, a hos8ice nurse chec7ed on him and his wife #arol twice a wee7, as did a cha8lain. ;It's the best thing that came along,; said 4ohn, who read se eral boo7s a wee7 and watched the Dodgers. ;1ine days in the hos8ital Kfor surgeryL was more than enough. 1ow I'm home, en<oying the life I ha e.; 5e and #arol

didn't eI8end energy on fre9uent tri8s to doctors@ instead, the cou8le focused on saying goodbye. ;When the time comes and he's gone, I won't ha e to loo7 bac7 and say, 'I wish I would ha e said that,'; said #arol, recalling that her dad 8assed away without e er s8ea7ing with her mother about his dying. 4ohn Wracian died !e8t. +. 5os8ice can also ha e more 8ractical benefits. ;We discuss whether they need a homema7er to wash dishes or read to the 8atient so his wife can get out because she's eIhausted,; says Margaret #lausen, 8resident of the #alifornia 5os8ice :oundation. "n a erage, hos8ice 8atients recei e at least three hours a day more attention than nursing-home 8atients. And hos8ice is chea8er than traditional care. :or eIam8le, at 'alm of 3ilead #enter, a hos8ice in 'irmingham, Ala., the a erage cost 8er 8atient 8er day is M?+,, in contrast to ME,)*, for I#6 8atients. 'ut hos8ice, which well-meaning clergy members im8orted to this country from 'ritain in the )C?,s, ministers to only )?D of dying Americans. ;The word hos8ice has toIic connotations,; says #lausen. That's 8artly because Medicare starts a fatal cloc7 tic7ing on hos8ice 8atients: it will reimburse for hos8ice only after two doctors certify that a 8atient has less than siI months to li e. 'ut many doctors are reluctant to do so, es8ecially for un8redictable diseases li7e heart failure. !ome 8hysicians also fear regulatory scrutiny, since the 6.!. 5ealth #are :inancing Administration has actually ordered in estigations of hos8ice 8atients who li e longer than siI months. !ome fear that a short 8rognosis will be self-fulfilling, and many <ust don't li7e to tell someone he is dying. 5ence the a erage length of stay in 6.!. hos8ices is between two and three wee7s, hardly enough time to ta7e ad antage of a hos8ice's su88orti e en ironment.

!o long as it re9uires 8eo8le to abandon ho8e of full reco ery, hos8ice is unli7ely to become a mainstream 8henomenon. Most 8eo8le want to fight, hang on, ho8e for a miracle. (ecently, #ummins, the <aHH 8roducer, heard that he could 9ualify for a clinical trial. 5e 7new the trial carried only a remote 8ossibility of a cure, but he didn't want to gi e u8. $ en so, when he and 1ancy totaled the cost of his 8ain medications - M+,+/, a month - they were 8resented with a cruel choice: o8t for hos8ice to sa e money, or go for the trial and 7ee8 8aying for the drugs themsel es Athe Medicare hos8ice reimbursement includes 8rescri8tions@ Medicare generally doesn'tB. ;!o it's hos8ice s. ban7ru8tcy,; said #ummins. 5e and 1ancy chose hos8ice care. 'ob died at home Aug. )?, before the trial began. "ther 8atients also face difficult choices because hos8ices don't usually offer 8ricey 8rocedures such as dialysis, radiation or chemothera8y - e en when designed merely to 8alliate sym8toms. 3eorge Thielman, a retired 8rinter from #hicago, didn't want to sto8 life-8rolonging dialysis after a cancerous 7idney was remo ed and the other began to fail. ;6ltimately, he died in a nursing home, a 8lace none of us wanted him to be,; his daughter 'etsy says. ;We were always o8erating in crisis mode.; Another shortcoming of hos8ice is that not e eryone can afford or wants to die at home. AAlthough a few hos8itals ha e in8atient hos8ices and E,D of nursing homes now contract with hos8ice com8anies, C,D of hos8ice 8atients li e at home.B 3ans, the retired 8sychologist who li es alone in a Manhattan high-rise, is worried that she will need medical care at night. More generally, African Americans, (ussian immigrants and others who ha e had less access to health care fear that doctors who

recommend hos8ice are trying to get rid of them. ;All 8eo8le want to die with dignity, but the definition is different,; says Dr. Annette Dula, who wrote a boo7 on ethics in African-American medical care. ;In the blac7 8o8ulation, 8eo8le want aggressi e, continuing treatment e en if it means food tubes, 8ain, antibiotics and losing their sa ings. It's a sign of res8ect.; Designing a health-care system that would ta7e into account e ery uni9ue death would be im8ossible. 'ut reformers say there are a few things the 6.!. could do to im8ro e how most of us die. :irst, insurance com8anies could reimburse more 7inds of 8alliati e care, which is chea8er than attem8ting a cure. ;Insurance will routinely co er eI8ensi e chemo with a /D chance of success but may not co er o8ioids for 8ain relief,; says :oley, the 8ain s8ecialist. ;We are tal7ing about a redistribution of money that we already s8end.; When Dr. !haio a was caring for #ummins, she s8ent an hour with him one day eI8laining what hos8ice could do for him. ;5ow do I describe to Medicare how I treated him that dayG; she as7ed. #urrently, many 8alliati ecare and hos8ice 8rograms rely on donations to stay afloat. This month #ongress will consider ways to increase the use of Medicare's hos8ice benefit. !enator #harles 3rassley, the (e8ublican who chairs the !8ecial #ommittee on Aging, wants to clarify Medicare's re9uirement of a siI-month life eI8ectancy as a guideline, not a hard rule. A(eformers ho8e #ongress will formally declare it an a erage instead of a ca8.B !enators !usan #ollins, a (e8ublican, and 4ay (oc7efeller, a Democrat, also 8lan to introduce a more general end-of-life healthinsurance 8lan. 1eIt, more states could begin 8rograms li7e one in "regon that offers all 8atients a form stating

their 8references on resuscitation, tube feedings and so on. That state has also benefited from two referendum cam8aigns on assisted suicide, which taught oters a great deal about the current shortcomings of end-of-life care. Today only about a third of "regon residents die in institutions, in contrast to the ?/D national a erage. As a state, "regon s8ends the lowest amount on in8atient care in the final siI months of life. #ities can ado8t some of the changes under way in Missoula, Mont., where a 8ro<ect called the Fuality of .ife's $nd is educating local doctors, lawyers, clergy members and students about what it means to die well. :or eIam8le, both of Missoula's hos8itals now treat 8ain as a fifth ital sign, ensuring that medical staff will ta7e it seriously. (ecently the 8ro<ect contacted Missoula's lawyers to begin teaching them to write better ad ance directi es. And 8ro<ect olunteer 3ary !tein incor8orates end-of-life issues into the high school 8sychology course he teaches. 3raduate schools could also teach more about how we die, 8articularly medical and nursing schools as well as seminaries. #urrent managers of nursing homes and geriatric wards could in9uire about the A.M.A.'s course on end-of-life care and subscribe to the three-year-old 4ournal of &alliati e Medicine. They can learn a lot from -eterans Affairs hos8itals, many of which ha e made im8ro ements in end-of-life treatment in the 8ast fi e years. Doctors could s8ea7 more o8enly with 8atients about 8rognosis and mention comfort care when a serious illness is first diagnosed - e en as traditional treatments are eI8lored. Then, if a cure isn't found, ad ises Dr. :red Meyers, who chairs the de8artment of internal medicine at the 6ni ersity of #alifornia at Da is, ;be honest and say, 'I don't thin7 I can cure you, but I'm not going to abandon

you@ you're going to get good consultation, we'll ta7e care of your sym8toms and ta7e care of your family.'; The most challenging reform may be to get 8atients to become their own ad ocates for better death. That would re9uire fran7 tal7 about a somber sub<ect. That's not an entirely unreasonable eI8ectation, reformers contend. They 8oint out that Americans successfully changed birth in the )C0,s and '?,s by getting fathers more in ol ed and focusing more on mothers' well-being. 'yoc7 belie es that the boomers, who demanded many of the changes in the way we come into the world, will be e9ually insistent on changing the way we lea e. ;The baby boomers are the most self-centered, arrogant, willing-to-try-new-things generation e er,; says the JC-year-old, who dri es a !aab. ;They're going to bring the same collecti e raising of eI8ectations to the care we gi e 8eo8le who are li ing through the end of their li es.; To order re8rints of this article, 8lease call +)+-/++-)??C or e-mail Time(e8rintsN6! WIT5 ($&"(TI13 '% W$1D% #".$ A1D MA33I$ !I$3$(>#5I#A3", DA1 #(A%> ."! A13$.$!, 3($3 :6.T"1>AT.A1TA A1D A11$ M"::$TT A1D DI#2 T5"M&!"1>WA!5I13T"1 #"&%(I35T P +,,, TIM$ I1#. I &(I-A#% &".I#% tema:

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