2.what does joan mean by cheechee? why does joan refer to cheechee throughout ber writing?
3.why does joan raise a critical question:how much "cheechee" should a patient endure fir the possibility of survival?
4.why and how does the american health care system and insurances make it nearly impossible for physicians or ICU doctors to be compassionate or caring?
5.who is often seen as the major communicator and caregiver to their patients? why and how?
6.why is this chapter important to your future? can what you learn from thjs chapter be applied to your field of work?
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The Dominion of Death And death shall have no dominion, Dead men naked they shall be one With the man in the wind and the west moon; When their bones are picked clean and the clean bones gone, They shall have stars at elbow and foot; Though they go mad they shall be sane, Though they sink through the sea they shall rise again Though lovers be lost love shall not; And death shall have no dominion. -Dylan Thomas In medical science, the unlimited battle against death has found nature unwilling to roll over and play dead. The successes of medicine so far are partial at best and the victory incomplete, to say the least. The welcome triumphs against disease have been purchased at the price of the medicalized dehumanizatlon of the end of life. -Kass, 2002 n American SICU is a miraculous place to be if you are a patient with reasonable odds of surviving. All the resources of technology, medical knowledge, and drugs, will be brought to bear to help you walk out of that door back into your life. If you are likely to die, however, an American JICU is a terrible place to depart, surrounded by machines, with tubes in every orifice, yunable—because of sedation
156 Chapter 10 and the ventilator tube in your throat--to communicate with those you love and say good-bye. "Cheechee" American doctors tend to be uncomfortable with dying patients. A British physician observes: In the UK we strive lese officioruly to keep alive. This is not callousness but stents from different attitude to death. American physicians seem to regard death the ultimate failure of their siell. British doctors frequently regard death physiological, sometimes even devoutly to be wished. This attitude is slowly changing, but it is still a rare American phy sician who sees his or her role as helping a terminal patient to die well. Since data suggest that 20 percent of all American patients who die do so in the ICU, this is a serious concern. Too often in ICU, "heroic" doctors persuade patients or their families to continue tot. ment that many falled observers find cruel, class, and unnecessary Some residents empto the term foggtog to describe use of technol ogy to prolong dying. The French have an even more graphic phrase acharnement thérapnutiqur. Achartement is what an animal docs to its prey before devouring it.' In an ICU studied by Zussean, the real dents described such technological abuse of the body as "cheechee." referring to an old, and not particularly amusing joke, which he cites in one of its briefer versions: Missionaries in tribal land are captured by the natives and brought before the chief, who give them a choice of "chechee or death." The first mission my chooses chercher. He is then set upon by the group, tied to a pole, and beaten by each member of the tribe. The rope is then tied round his hands and he is dragged about a mile, losing him and pieces of himself. Finally, he is thrown over a wine. The second missionary, asked what he choose, says "I never thought I'd say this, but I would prefer death. The chief suya. "Yes, bat first alle cheeches." Zaman comments Thekec matcher Death is certain. What agraars to be a choice la really no choice at all. But death cannot come qaldinthe joke it must be greceded by "cheech in the ICU, it must be preceded by treatment! Here is one such case. (Let me note that that although the ICU attendings, residents, and nurses perceived this as flogging or clieechee, the patient's surgeon construed this treatment quite differently) During my first month is physician, who knew I was in attention to a patient Mr. received a second liver transp and acute liver rejection, and spiraling downhill course." S His only possibility of surviv ing indicated that's really n Dalby's case during morning young heart and lungs were that he had held a long con being "very optimistic," he e chance of surviving. The fam and that was the ICU docto A few days later, Mr. Dall geons discussed the possibili After another relatively stab creased the patient's probabi percent to is percent or 20 would give Mr. Dalby onen would consider a third trans Passing the patient's rool with her am around the st Mrs. Dalby told her that sh things done to her. "But wl understanding, comforting fore leaving, brought in a be This occurred on a Frida Mr. Dalby had developed V a deadly bacterium. An inte there is, circulating in his b! surgeons had the patient lie ported that they had never h VRE; they felt the entire sit fatal," said one nurse. The VRE out of his blood, the d the surgeons decided to go scheduled to have liver trar came available), and if som liver; the criterion is that th
The Dominion of Death 157 nicate with those dying patients. A is not callousneas but sicians seem to regard os frequently regard wished! rare American phy- trinal patient to die merican patients who Too often in ICU, ilies to continue treat- less, and unnecessary escribe use of technol- 1 more graphic phrase an animal does to its by Zussman, the resi- e body as "cheechee g joke, which he cites During my first month in the Midwest ICU, 2 young attending physician, who knew I was interested in end-of-life issues, called my attention to a patient: Mr. Dalby was a 46-year-old man who had received a second liver transplant two days earlier. He had an infection and acute liver rejection, and was on what was described as a "rapidly spiraling downhill course." Said the attending: "Basically, he's dying." His only possibility of survival was a third transplant, and the attend- ing indicated, "that's really not an option." A resident, presenting Mr. Dalby's case during morning rounds, reported that only the patient's young heart and lungs were keeping him alive. The attending said that he had held a long conversation with the family during which, being "very optimistic," he estimated that Mr. Dalby had a 5 percent chance of surviving. The family wanted the patient made comfortable, and that was the ICU doctor's goal: to make him comfortable. A few days later, Mr. Dalby's condition had improved and the sur- geons discussed the possibility of performing a third liver transplant. After another relatively stable day and night, the ICU attending in- creased the patient's probability of receiving a third transplant from 5 percent to 15 percent or 20 percent. The surgeon declared that he would give Mr. Dalby one more day, and if he looked good, his team would consider a third transplant. Passing the patient's room that afternoon, I encountered a nurse with her arm around the shoulder of his wife. She was listening as Mrs. Dalby told her that she never could stand having such terrible things done to her. "But what did he want?" asked the nurse in an understanding, comforting tone. She listened and reassured and, be- fore leaving, brought in a box of Kleenex for Mrs. Dalby. This occurred on a Friday. The following Tuesday, I learned that Mr. Dalby had developed VRE (Vancomycin resistant enterococcus) a deadly bacterium. An intern described it as "the most evil bacteria there is circulating in his blood." Despite this setback, the transplant surgeons had the patient listed for a third transplant. The nurses re- ported that they had never had a patient in the ICU who had survived VRE; they felt the entire situation was abominable) "It's 100 percent fatal," said one nurse. The original plan was that if Mr. Dalby grew VRE out of his blood, the doctors would stop treatment. Despite this, the surgeons decided to go ahead. He was "on the list" (of patients scheduled to have liver transplants when and if a suitable organ be- came available), and if someone expired very soon, he would get a liver, the criterion is that the sickest patient gets the transplant, and ives and brought before death. The first mission- oup, tied to a pole, and en tied around his hands of himself. Finally, be ed what he chooses, says, th. The chief say, "Yes stappears to be a choice lly in the joke it to be aded by treatment at although the ICU flogging or cheeches quite differently)
150 Chege 10 The Dominion of Death 159 Mr. Dully was the ticket. "Let's hope to che ha an who scedent for a while" commented one disappearing une Later, som med 1 tulled with the chaplain, who had rpent un bour with the Dalby family. The patient was responsive despite having received nostre for some time. He had started having read the docten worried that his sepsis infection) might have affected is bin. The patient's wilt wu tady to let him reported the chaplain, but the traplant worro kept encourag Ingber, myag that I had patients like her hubend who we walking oond today. The wife did not wet to make the wrong decision The tnplant tram late for the lid of brevior, reported oben, when wile want to let her parter, they wy"How dare youl" The chaplain taking if one knew the odds could cite them to the family. it's 50-50, le might be worth going for it, but it slow, person, he said. It was apparently far les than 50-50. No cor wanted to give metodds, although one mine pened at the wint had boots 1 percent chance of mig The chaplain obrved that the family are the planter pron, they were the one who talked to fly memben od put tremendo manlund emotional pret "How can you let him in control the peo's wile and brother wunder "How can we ever He will be in the otherwis might wife Landing met och Medecind the chaplain, and monipuning premure on the family to be trying. It is hard to go in him. The chaplain we wypt Ile dered the family wing through of The evening the doors to win the desi ity of the the wel vity. The doce odoled that it will alerted in und daher dritte with the family ts one மான் போய்ர ராவியா பாப்பா "alara Oh which con ped). The சோயா பால் upline de pantalon en mind வால், மே மலேmail" Alle M.Dully witcher kan du வ, மாபா பாட்டம் Maal பொடியப்பன் "Every Single Person We Care for Would be Dead Without Us An ICU attending physician described the first man I spent time with the ideal muroon." He has wonderful hand, marvelous clinical ability, and enormou knowledge," nad the attending, "The only thing is, he doesn't look the role. He was right in all respect; thus rother well, boyish-looking man was a fantastic margeon and a warm, thoughtful human being I liked three trupat surtoos I spent time with and bad wonderful time observing them at work. Trplant surgery ating! What an incredibly high adrenaline purt Ilamed that transplant rots ver, there to retrieve the or they word, did the first man that I would like to accom pany him when he obtained. These doctors to describe this is the grily Surgret hervat on Saturday afternoon, I received from Twitter my fieldnoten Allout 12:15, at making him rock, baking shapes and brightening on in Sarde palle, die Wet by welche water wiwer limbu Said dinya reli ile durere alle. The prefere will Por Air Foad and open og delay unter den po there at Sendiri the youth La dele, Tweede Il cody lodowe We are alwWided Wwwwwwwwww MW www.ro ரா, காயமோரனை Theme . WWW wwwwwwwwww way SA player 1
160 Chapter 10 161 The Doon of Death the night operating therfogandlit back to ury car and bant. Yeah, they pay their des, and they're IS mated that it costs about 510,000 to harvest liver. All in all, it's $150,000 to perform verl] Incepey Meliore pays about though to be the cost of the procedure. Mabody 19 the dollar. Istiny, the catever done word to the patient Senden Tod bland abent tying at sight, through to re- trieve It aan be dangerou, all Sanderson who is clearly trying to docrites into their Hespoke of riding our lives. Now you can it by we're ind," he sail We took meer belancet the militbout 220 Tesselleste bil The fint thing we do nid Sanderson to check the death ceramal the coat fo be the checked de Dalt to make doublywende height It to me that they spend the point od got down to the or more reply them. I they have to worry abot doing that he could be por edhe together and The table we arrounded by surgeons. The best team removed, in wpected, and rejected the patient's heart attable for transplanta tion and left the room. Sanderson und Tod kept on working The verbond though it work. They packed the city with le they world. They were conting the way, and duet. Atasi und Seefarthe Threr back. The live ww placed to bude ceas, od Sundecaried it and do slag Samed the opening the (The ver we how in plante selfs tend the days there sa de la Sulley, what willing all of his um did I don't wang dan perlu The were working Wu del 442 Olmowym Tod will working while Sander rey de parte wall. l w luge . Tiems, de down the file has adher liber, which had bem dl. To will village de aperuing ouble When style they Wechange wat WE Tod was on the rig forpleheiten Send wing her the che Theme and we will or years in -யான, wil Satire ய மடா will all the water of the instal wheth Weath by wwer Welt a lean altes dial ilear and the I learned that Dr. Sanderson was up until 3:00 AM transplanting the two kidneys. The following Tuesday, I met the African American Il-year-old who had received one. She seemed extremely knowledge able about medical procedures, asking probing questions, which Sun- derson responded to with warruth and understanding. Sanderson - traduced me "Dr. Joan" and told her I had been there when he obtained the lidacy. During his rounds, be chatted with a nurse, who seemed to be part of the transplant team, who exclaimed "let it exciting about Clifordi He's been on the list six years." "He's a good Foy. responded Sanderson. I reflected. If they know their patientax years before they get transplant, they rarely do in them. The trip to obtain the organs reminded me of a cause movie I had seen years before at a film festival, about bringing the seront for sick child from or, perhaps to Nome, Alaska; it involved mowitom, dogled, and tiny plane battling the element to save the child's life. When I mentioned carrying the serum to Name to the chief of transplant, he said, "Yes, it's a bit like Sir Lancelot going to get the Grill, and returning with it." I attended two meeting of the liver transplant team, which in duded a paychiatrist, frenologiespecialising in liver disease), $ hacial expert, transplant nunes, and the surgeons. Here, they dis cd who we going to be put on the last for tranplant and what listiny they were given. (Medical inrurince Ww one of the factors considered, benefits had to cover the cost of posible complications well as costly munosuppressive drug that had to be taken for the remainder of a patients are oft mean that person to likely to die son without a tranaplant, these people are given pegers, which po off if a compatible liver becomes wilable. Some patients, however, may be on the list for years before liver becomes available. Powerful saftThese doctorado, in a play God." Talso observed three cup liver transplant and two kidney procedures. The liver tranplaat (from a living doction of whose liver was removed in the adjoining operating room) wached uled for 730 AM. The patient was the table being cend" 3.35, and Ich the OR 1.30 PM, when they mured me that they were doing. I was so etwasted I cold hardly stand, adrenaline and years of training the kept the room Chatting with me before the procedure be, the more TAL
The Dominion of Death 163 162 Chapter 10 marked that they had a special relationship with their patients. "Every single person we care for would be dead without us," be declared Trupture surgery is at the cutting edge, he said, and the procedures keep getting harder. (I surmised that the difficulties probably faulti- plied as they attempted increasingly during procedures on a wide Tange of patients.) The patient, Mr. Bordo, aged 42 muffered from end-stage liver dis- ease, alcoholic Cirrhoses and hepatitis which I was told is incurable and extremely tratamittable. Is it like operating on someone with AIDS?" I inquired, and the pargcon said it is worse than AIDS because there are no drogs for it. "It gives you a different perspective on thing when you know you're operating on someone who can Icill you," he said. The operation was long-some time was spent waiting for the sec- tion of liver to be removed from the donor (the patient's cousin) in the next room--but the patient made an uneventful recovery, spending day in the ICU before being sent to the floor. The ICU pbysicians and transplant surgeons agreed that most transplant patients do have a smooth postoperative course, leaving the unit the day after the pro- cedure. Four months later, however, Mt. Bordo was back in the ICU with csophagitis, gastric and deodenal erosions, and peritonitis, "What- ever's going on with this guy, It's not getting better," said the ICU attending. After a month in the unit, Mr. Bordo was still very sick Min. Bordo requested a conference with the transplant surgcon; the patient's sepsis (infection) was worsening, he did not respond to stim ull, und his wife could not bear seeing him that way. She wanted to ask the surgeon to shift to "comfort meatures only. When the sur geon arrived, he talked to the wife outside the patient's room. Ac- cording to use, who was present throughout their conversation, he told Mrs. Bordo not to listen to the ICU doctors, that he knew the patient's liver and knew he would recover. The transplant surgeon bad passed certifying boards in critical care and told me that he knew more about intensive care for transplant patients than did the ICU attending. He may well have, although he probably lacked the time to keep up with the literature, as did the ICU doctors.) "I think we can fix this thing by taking him back to the OR for & wasbout,"wid the surgeon. Mus. Bordo responded that all she wanted ww for her husband to comfortable. She Inquired: "How long can someone survive on ventilator) like this?" The vorgeon responded "Oh, I don't know we don't just turn off the seat because people are bored." The nurse reported that the patient's wife and daughter were so tormented that she had to take them into the small conference room generally used for family meetings, for some "quiet time." Speaking of the surgeon, the wife said: "How can ho do this to me? I feel palled in 10 different directiona!" Mr. Bordo was brought back to the OR, an abscess was found and drained, and his condition improved slightly. His mental status was poor, however. "I just wish he wasn't as squirrely," said the attending on service that week, who predicted that despite the surgeon's opti- mism, the patient would not leave the hospital; if this were his patient, he said, he would let him go. The following month, the patient was still in the ICU. His indica- tors of hepatitis C had tripled from those taken the previous year. Mr. Bordo was dying from progressive hepatitis C disease, said that week's on-service ICU attending. The ICU team discussed various therapien "What we're doing now is like rearranging the deck chairs as the Ti- tanie sinks," remarked the attending. A resident, who prided herself on "telling it like it is," said she had informed the family, "We've done everything, tried everything, and made no difference in his condition." His hepatitis measures were soaring, the team despaired of "wean- ing him from the ventilator, and the ICU doctors considered telling the family he should be sent to a chronic care facility! After 65 days in the ICU, Mr. Bordo we accepted by a unit in the hospital that cares for patients who are still dependent on the ventile tor. Two weeks later, when I inquired, I was told that the patient had been discharged from this unit, and was walking!" The transplant doctors, then, were justified in holding on Thun plant surgeous are in the business of providing miracles, of giving life when there is no hope to do that they have to be more con fident than most surgeon, to feel that they hold the key to life and that they will walk the patient through the valley of the shadow of death. They cannot bear anyone, including family members, question ing them and their judgment. It is this confidence that gets the patient through-when he or she gets through That, of course, is a crucial question. How much "cheechee" must how tany patients like Mr. Dalby endure so that Mr. Bordo can survive? (Not only the patient endures cherchee, the family suffers a well) Perhape it is not perceived a chechee when the patient re- cover, it then can be defined as prolonged and occasionally painful therapy Previous
TA Ceper 10 The Dominion of Death 165 Who should make these termble decisions? And what criteria should hemed to decide? "The Temptation to flesh and future Our Way to Eternal Life Transplant fargeous pouens the surgical temperament par excel lence. Describing the American frontier value system prevalent among transplantation and artificial orgun pioneers, sociologist Robe Fox and biologist Judich Swtey describe the men and most re men) berol, plontering, adventurous, optimistic and determined. They not, however, that there is a dark side to their thos, which often involves bellican death is the enemy perspectius a recue oriented and often aus determination to maintain HD ALADY.COM de relaties, bebris-ridden refusal to pe limits. Leaving the field, after 40 years of research for Fox and 24 for Swasey, they By our wealing wat by singles from what believe a bylo diellit the pering people Through or permite de mwele rochuced, and The temple is They quote theologian and ethical Ramsey, who was in bib cal termine the triomphalit temption to slash and were out Way to tell The conflict between the warch for medical progress and the ho man offering this search can generate in discussed in New Yorker magine profile of France Moors one of the most renowned sur toms of his time (who died in the 1970). As chief of mergery Harvard, Moore led his department inferiomsperiments that plo hered innovation Induding organ trasplantation, heart-wave gery, and the use of hormonal therapy paint breast once. Util late in life, Moore exemplified the dangerouded that you und Swany question. Det herud, mis never be me spalle Confrontal with a dying patient, he did he co- ide the most outcome proposals Later in life, however, Moore had second thought about the chies of what he and others like were doing and began to wonder whache science was not keeping people live 100 long. The whor of the profile, Anal Gewande, lim self young Harvard surgeon, wonder which Moore the better the dangerously dute one, or the per Moore who had ethical qualithout such experimentation. He confide"Strangely, I had that it is the youne Moore I mis--the one who would do anything to save those who were thesicht beyond saving The author's preference is not at all stringe. He is a surron Guwande was admined to the prestigious Harvard training program because he displayed the right stuff." A system of rewards and pun ihmest martored his activist, aggressive, heroic ac Surgeons do not just stand there and contemplate ethical distinctions, they thing When I presented by research finding to a group of surgi galdes, ubicant minority objected in their critical and of the lecture to the fact that get what to Could mergeant change Should they change? Should they become les agressive, better able to communicate with patients and families, more interested in and knowledgeable about caring for dying patients) Or are they superbly selected and trained to do what they do battle death with all the technological armamentario modern medicine hus to offer? American surrontare, perhaps, more-well, thinnur geons in other countries. The imperative to intervy Payer, was and is well critical to American physicians professional identities." IF "American plisis seem to regard death the ultimate fibare of their skillargeons are the most American of pbynicina." As the attitude of the younger Francis Moore's described death ple. Trapically, we all know that attempting to slash and soture our way to eternal life leads to damnation and suffering, not to the defeat of death. Death comes, but fint a little cheeches Some surgeons have taken steps to change the culture of American rurgery. Geoffrey Dunn, third-generation margeon who die tion in the Journal of the American College of Surgeons on "Pallave Care by the Surgeon, argues that surgeons must change to meet the changing demands and espectations by pudents, and the charadi cional heale suthoritarian rical model is poorly in today's most paltarin the Arcanine Care Workgroup has been cathet brilitate change and devise el for LDA how to commodicate with me and care for dying pic Today, weer, murgeons internated in delivering compassionate, informed reto dying patients and their families are in a din
The Dominion of Death 1692 M Cele 10 minority. Surgical M&M conferences will focus on blaming and shaming colleagues who did not conduct the battle against death to the bleed. Det hele. Cheech in mentioned Discussing these struggles about limiting or withdrawing aggressive treatment would seem to portray ICU physician companionate hers who would never think of flogging a dying patient. Sadly, this is tot The RUB, the lake of Unarteptable Balne, was considered by se but more intelisten the Midwest SICU. It was never dis Cred car the patient's potential quality of life after leaving the wait. The noticed for more esta Nished among the critil de doctors Icountered in New Zealand. Variation in how dying patients and a not only among the intensivists in the Mid- WIE ICT Sentes and the Western world In April 2005, e Teto Conti Conference on Char Im In End of Life Care we conved in re, Belgium, to disco the problema posed by the fact that today, more and sicher patient vive longer in ICU, o kept alive primarily by sophie cated technological systems. After listening to two days of prents tiena by experts, a 10 person jury was charged with wweringar of shoot ICU are at the end of life. The response to the fit quition as there problem with end of-life care in the ICU?" wDefinitely yelled the menderity in the i unde are both within and between co, noms with the forcing greke mine Golcrement, de types of treat wat wide, and the man with This is an is that has been much discussed among doctors, often in terms odiofils When is continued aggressive care futile? Various definitions of utility have been advanced and contested, has the stility of the concept." A New Zealand utensivist objects to the term "edical futility for sumber of reasons, including "faint Tess of abandonment and the fact that futility is discussed in terms of the doctors privilege to define it, ignoring interactions with the family. "Ile prefer the concept of reasonable decidon or better will, a decision that it is able to continue RTE CARDA similar suggestion was allered by a British intent during the bus se end-of-life jury deliberations. As the New Zealand doctor painted out, however, the core of the personenshrined in British common with echoes and meaning that may scape those who live under different legal systems. Fomple, the American lexul tra in based in part on the notion damar the doctor dar se the patient Ly treating against that patients will or writing treatmequently, where were done not necessarily have the significance for American and Euro pean physician Arasonable surgeon) Armable Intervist? Ar sonable family from which the background Chinese, Indian, Airl Gu Americi, Spanish Catholic, white Anglo-Saxon Protestant) Amendation king place in inglese and rule-bound context, the New Balanteavit, who de care lying decomfort with inherent uncertainty guintentia American He contien To be rely on New Zealy making decision por todo o the body, there were in the very corner. Den duke hedhinyany making the deca to place in a www familie oder பபப பயா' (His கயிலா பேராய turched a fost recun, Ginklare my We பாட்டடயாடப்பட்ட created with you Therehe ht prege dat term corrependin He note that she was in New Zealand, hiking in terms of enable to continue repron medio with metal opposed to ale chines, which can stand for in local Kay Lord Kelvin's Follocy Revisited One challenge in making decisions at the end of life isposed by the yol tablishing beforhandy who likely to die wd who has good wie in cothry, the sight fundable just what is a food chaic) The statistical odds of were proper potatisering from or in condition Deciding how he particular patient will do is of almost imponi Wadora e crow the fine line dividing role tort to loppuient se deploying all the more able to modern ki, tronchechet, the other patient Caying
The Dominion of Death 165 they have been selected and superbly trained to do battle death to the hitterend. de Coupe 10 The intervist notes, as I did when conducting this research, that calmaral differences affect doctor practice and patient crpectation He comment "How can there be a societal agreement on reason ablan' when (American) society cannot even agree to provide some level of universal healthcare entitlement to all its citizens He con clades, u did I that not only administrative models (open, dosed, semi-dosed ICU) and doctors' values affect medical decision making bot slo what be calle societal mythe" and what I characterite mon comics Apropos of his comments, it occurred to me that imporrerished N. rican American patients on Medicaid, which, according to the plant surgeon, reimbane 19 cents on the dollar, lack Insurance that will cover in mosuppressive drup, consequently, they are not elig ble for liver transplants. Thus, in the America medical system, the only power poor African American families postes is nepative: They on my sound insist on continuing ICU care, hoping for a miracle. They have no other power in a health care system where they are denied some of their des offered to those who are more comfort bly stated. In New Zealand, to the cory, the sumber of liver transplants the Socialist government permita la limited (45 a year, for population of 4 million). But the government pays for these trane plant (a limited amount to cover all the expenses of the soul New Zealand transplant unit) and for the subsequent imensoppressive drugs. Thus, in New Zealand, fewer people receive transplants, but there are not limited by ability to pay." It is perhape obvious that I prefer "wylogie baud on mora discomfort to attempt to quantify probabilities. No matter how many times on fpe cor, e cannot predict or influence the heade-tail-odds of the metto. Too many American physicians still Toscribe to Lord Kelvin's dom, that whatever you know that cannot be exposed in numbers in mare and instiefactory." Preslenen to predict individual outcomes can lead to surcons classic fiction of cherche. "Tve seen patients like this survive!" This is why, when it comes to decisions at the end of life, I believe chat moral disconfort" should statistical certainty orner tainty. It is also why wurgeon should probably not make decisions about shifting from here to confort care. If the heroic culture of can wargay does changes, it will takes generation to do so Uadil then, it might be wise to coupe morgon to keep doing just what Dying in an Academic American ICU: "Follow the Money" "Science" is venerated in academic medical centers. The medical view of science, however, is often ruter dated, with facty and values meticulously separated, a distinction contested by contemporary phi- Insopbers, historians, and sociologists of aciec. When facts and val es are alienated, with "hard"dence that deals with acte valorised over soft" science concerned with elusive objecta rochas "values" then ins ruchu death and dying, which despite all efforts real quantification are perceived measy, atractive, and profoundly scientific. Popular beliefs about male and female mature indience the evaluation objectivity, as, mind, and facts are cast as muc- lie, objectivity, feeling, and nature are defined as feminine. Come quently, soft lobjecte rochu death and dying are unreflectively identified as the natural province of social workers, od chap lain (who are perceived somewhat feminine since they deal with "soft spiritual matters) In recent years, change has been evident. The theme for the 2001 meeting of the Society of Critical Care Medicine wending Seo ence and Compassion and featured a series of presentations on Com panicate noile Care in the Intensive Care Unit (Several speakers, however, commented on how small had been the previous diences for talla on date and dying.) Another sign of change la indicated by the subject of the 2003 Brunes Con Meeting Challenge in End-of-Life Care in the ICU. Nevertheless, despite the fact that a number of highly intelligent and concerned intre now working and publishing in this -funded in part by the Robert Wood Johnson Foundation ubone of compassionate care at the end of life is still pergi Specially when compared with easily quanh. National descarchadonal experiments of statistical manipuli tas at midisgnetic data Reflecting on how American intents deal with dying in the ICU, I wadvised by an intervist friend to follow the money. It was obvious that research and publication on death and dying had been similated by the Robert Wood Johnson Foundation's Initiative
170 Chapter 10 The Dominion of Death 171 on Death in America. This is neither unexpected not corrupt. Re- search follows the money in every discipline, including my own field of anthropology. Few researchers can afford to fund their own invest gations, and an investigator who did so would rank low in the sc demic prestige system compared to colleague with greerom grant from a private foundation or government agency The money is relatively simple in New Zealand The Auckland ICU receive a fixed om from the district health board, which covers salaries, equipment, wupplies, and other identified costs. This is con- verted to an average hourly rate for each ICU patient, which is then billed to the appropriate hospital service (uch a medicine or mor fery). There is no fee for service system still nor is there anyt tempt to attributt specific costs, such as medicine o wpplies, to indi- vidual pudents the rules regarding intensitate se mare. Transparent The TCU has a 15-step luy scale based on years of service. Progression beyond Step 3 is based on in anual performance review, employees may be advanced more rapidly if their performance is rated us exceptional. The reviews are conducted by intensivist colleagues and cu personnel splor manes, residents, secretaries, and physiotherapists. I aspect rochements, from colleagues and subordinates who spend most of their working time together, look very different from the top-down, productivity-focused review car ried out in the Midwest Medical Center, ich will be discuted "B) The peactions and regulations governing ICU reimbursement and intenariats' salaries in American academic medical centenare Byaan tine. In some ways, they resemble the childhood game of Monopoly, where you make a wrong step, you may be given a card maying "Do not pass go or "Go immediately to js. The Midwest SICU makes no distinction between patient who can sed od those who cannot afford their services. The New Zealand unit makes no distinction, as well, but in Auckland, either the ICU nor the borpital receive leat money for some patients and more for others Approximately 25 percent of the Midwest SICU patients are af which in practice menos cicher no pay or cod. by Med ents which reimburses mot nothing or CUCIS, Approximately 5 percent of the SICU patients are over get the otis reim bined for the patients conting to comples and constantly change ing Medicare regulation. As the pool of older patients pows, with patient expectations and demanda continually escalating Medicare corts spiral while reimbursements are correspondingly cut Reading the Medicare regulations is mough to give one a three-Tylenol head ache Definitions of what constitutes critical care and can consequently be reimbursed as such, bear little resemblance to what is actually done for patients in the ICU. Teaching residents in not reimbursed. Telicing to families is reimbursed only under limited and very carefully defined circumstances regular die wpdate of the patient and inalupport for the mily, and in partenerering the patient' condition are specifically excluded (Tralica mine Documentation te quirements for these regulations are extreme, with mistake or choice of a wong Category leading to expenses being dinalowed. Private in murers tend to follow the lead of Medicare, so that a Medicare regular tion or refusal to reimburse may be echoed by BlueCross/BlueShield and other medical insurers. Consequently, following and documenting these complex requirements is expensive, consuming the time of doo tors, secretaries, and personnel whose job it is to 6t what actually occurs into these Procrusta categories. The hospitals have little in put into these financial decision, they are imposed from above. The behavior of intensivists, then, is influenced and often constrained by these regulations The proces that determine the salaries of the midwestern Inten tivists are correspondingly complex and opeque. Every year, the busi- be office tramite information to the two ICU co directors about the dinical work involving patientere) carried out by each in y this is expressed in terms of relative value units or RVU (the cale Medicare mes to compart one doctor's worload with anoth- cr'). The busin office sloo providentally of great funding for the year. The ICU co director evaluate the performance of each intensiv in nally, computing the dinical dollars and grant dollars brought in plus any special recognitions doctor may have received each co director then giver lary and bohus recommendations to his superior, who forwarde hie recommendation to the chairman of surgery for on, and of thesiology for anesthesiologia) The central fact, mentioned in my discussion of "no margin, no min" (Chapter 9) is that every faculty memberspected to e gut and get revenue and at least try to cover het her way ad capere. Since money sight with ICU Pringad reimbursement sinking, it is difficult to incompeted for
172 Other 10 The Dominion of Death 173 alty time which means time spent living with families, building rap port, and teaching residents how to talk to families and make end of Ide decision Cocoquely, in most academie 1CUs in the United States- wale in ICU term has been specifically funded to wady companion Me care at the end of life and devise innovations to Improve it comunicating with families and helping patients to die pool der VHOL.considered part of the profesional guides of tribal cuts.phpicianthese responsbilities are private their ful humant depends on the ethical sensibilities of each intensivist. (A Scott Piagerad's Guoby observed about his adored Daisy's love for her husband, it's just personal y lose the process of mako compassionate decisions at the end of life and communicating well with familie delined spend they are not parted to residente de chat should be marted entry physician To repeat Neither the practice or the teaching of these we recompented, they involve compensated faculty time) in the Midwest SICU, I obserud only one of the seven in die as the concomitents and teachreiden how to make decine dikto mi ha reported that had become far more citied to end of life concenter the death of his father. Here is comple of his teaching from my Geldnote Iture the artial latest start a das still alanka பெபாய் uெrattal (nt atlear uts tom Me berbelangrik dat het there should be bene மாடி larta tarilal en thaal lair. Valymbele he wanted my lebo Beyl the hing 4018 six vir now. How does it confonThere's the poid Deyword Thus wel de i le further The the full On the pression when these were bearhed during Tweed with parkierer many Rent want to show i handia deschandering with me to de como caring, how to COGUINES ET the Then me Caring for why many young people into medicine in the first place. During their training, however, young doctors are trained to transform patients' stories into cases, to prion Cite dealing with technical matters before they devote time to allo tona lactose, Indeed, they have time to devote), and to think about patients in the technical language valued by their superiors, a language that has no words or spaces for feeling Che nurses were the ones who bered patients and held their hands and who comforted die traurholtorben. The one critical care follow who I observed ating family member of dying patients with warmth and compus lacedir quality and he went to another hospital when his training was complet Hand in death with consideration and care for patient and family was not spelled out an aplicit polisy in the Midwest SICU. ere, hintentowold have had to light crvery inch of the wy, uno death rood death" for most mignon-unla He happens to someone else's patien) I heard no intenzite pride in how well the unit handed dying or commented with me lic, this wing content Map thenia capitalist declared to residente dur ing round Our ICU our school, our university is at the cutting edge of everything the cutting refer to knowledge of the latest findings in their and cert deployment of the most ad and dogs and technology Companion and collationes no caringed to the old-Ghione ma vimes reelthen green Corte docton were justifiably proud of the poten they ved hight have died in lese-illed ICU, bet no pride wu expressed in what went on with patient and family when they lost om one of the SICU codirector was interested in and of Lan het completely and truthfully with full. He did Bot real, however, how deurly We of voice and body language ladieste discomfort and impatience to move on to the next buk 1 relerved the wood co-director ose with family saddle eating wedge about the Cathartica optimts and families to delivered amble, informed at are utformed one What the militer theo com um sine to talk Daten, in ondmine emotional and Le prime parties will come trumph chopen widey in the MICU, that Key
174 Chaple 10 The Dominion of Death 175 were informed as well as they in fact wat die occurred because the GERARD individen But, despite the boopi slogan "we crearing was not part of the SICU'S institu conal polish it was exhibited by uses, or by doctors as part of compensated faculty time. It is not surprising that in focus groups run by our research project(mily members of ICU patients identi fied the tries the pirotalcomunicator and caregiver. To other words, in academie medical center TUR, not only are there latinitional mechanisms to encourage communication with families and compassionate as well as technically accomplished) end- of-life care, there are initial print traching and deliv ering och are Hard-preseed critical este doctor, laboring to fulfill RVUtd wie dve great proposals and conduct the research to being in grant momy, most employ their own uncompensated time to touch endents, anrwer questions, and provide emotional support for fami tes. Unless they tract print money for a demonstration project, CVU. (companie vloeit) se pritedcalculated, composed by the institution by the government and private health-care finding to whore polides shape throne of the fina cally reed American medicale with minimale of the edge chat rebut belly able to co may eren benytte dupan mathem mt Yes, but All of these ways of combating the dominion of death are individual Each of us to learn to wamber our days and make the court Physicians become more comfortable with the idea of death they can opport and mature patients and file during this pushed proces. All of ur-patients, families and doctors cept the fact that death is not entral event with fellere te pare went it defined as therapeutic failure But there is more to it Providing compania ICU care for tients and families the end of the issot entirely able to indi videl solutions the problem la sytemie or institutional We know some of the way dying can be made goling for patient and families, and we are con learning more. We here ned out drugs and techniques to comfort from the mettent enter the ICU to the me they love, whether that deporte le malor desh We arening how to contact conferences with fumice to inform them about the condition of the patients to educate and upport fully en la play them make difficult decine sbout shifting from here to confortare We know that families want more Information than they really receive from doctor and that Esquent updates help build a revole of true that facilitate decision making at the end of We that your docton moto care for dying putio da to families. Some of here Wooden fred பாலம் பாகம் is clai மாம், போய் மlை, pittaal aal paadaigalae All of this takes time. And we medical center has a great to wody and deviennentire reports to these problems, time- actly what today's hard pressed ICU do not here. They srebrny rocking up dinical RVUs (slated into of scie compensated by Medicare willing protecting care tempting to get fundato cover the lesso One can call for national com to these citit A Heart of Wisdom I bare followed the money and come to a place I did not particularly want to much. I had hoped to end with discon of how to appos the dominion of death wing that we cannot combat death by fighting it to the bevolend. Death was the last word. A limit le bude spinat death bad caly to buman wifering, and social, cs, and spiritual harm. Deschi con hue no dominion only when we realise that it is not part of life, that though lovers below love shall not I planned to yoote the Old Testament Toch word that what els 12) This would be followed by words of philosopher Hans Jonas, refoce- ing on the burden so bening of mortality de la combi wodwide and all is geword to moral wing where shot w
176 Chapter 10 institutions, too, are hard-pressed. Academic medical centers, espe- cially old, well-established ones, tend to be located in central city neighborhoods, with a bigh percentage of impoverished patients, who use the emergency room for their primary medical care and suffer from a disproportionate incidence of accidents and violence, with sur- vivors often landing in the ICU. The ER, trauma department, and ICU costs for care of these patients are unreimbursed (or reimbursed by Medicaid at far less than the amounts that the institution expends to care for them). The costs, then, for uninsured patients or those "insured by Medicaid, are borne by the institution--and eventually by all of us, who pay by being served by doctors who lack the time to talk to us and assuage our grief and uncertainty when a loved one is dying. We pay the prion, as well, for unreasonable expectations, our tured by media publicity, that encourage the fantasy that death is un natural and can be postponed by technological advances. We also pay the price in the United States for regulations devised by legislators, and administered by bureaucrats, that deal with rising demands and unrealistic expectations by reducing or excluding reimbursement for teaching young doctors, comforting patients and families, and educat- ing and supporting families as they make difficult decisions at the end of life. Individual solutions, learning to number our days and accept death as part of life, will not eradicate these systemic problems. So long as American doctors and the media disseminate the notion that a techno logical fix will bring we closer to eternal life, we as a society will pay the price. So long as there are impoverished patients who cannot pay for medical care, all of us will pay the price. We, as a society, must follow the money--and put our money where our mouths are.