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8 HASTINGS CENTER REPORT July-August 2004 T he day Amanda was transferred to our Pediatric Intensive Care Unit (PICU), we communicat- ed our anxiety, born of experience, by sidelong glances and terse descriptions of her array of cardiac anomalies. “Like Jeremy’s, but worse. No main pul- monary trunk by echocardiogram, and they couldn’t find good branch pul- monary arteries. She’ll need cardiac catheterization this afternoon to see if they can find anything big enough to accept a shunt.” To the pediatric inten- sivists, the bedside physicians of the ICU, this brought up memories of sev- eral infants referred over the last few years. In the more successful cases, surgery and careful intensive care had allowed us to send home children who were still blue, but alive and active. At the other end of the spectrum were a handful of children who had undergone one or more attempts to send enough blood to the lungs to support life, but who died after a few days—or after many long months. Cardiology and surgical groups ac- cepted Amanda into the unit, and we went to work supporting her during the evaluation. She was mechanically venti- lated to control her breathing, crucial to fine tune the balance of blood flow be- tween her lungs and her body, and she received medications by constant infu- sion. We hoped that the specialists in- volved in her care would eventually be able to send her home. We also hoped that her parents had been able to hold her and to see her awake before transfer, since it would be days before she would be able to do the things a normal baby would do—take a deep breath, cry out loud, or wet a diaper that her parents could change. She wasn’t born lucky, with a heart like hers, but she was born down the road from one of the few centers in the country that could give her a chance at living for more than a few days. Al- though her parents were only twenty years old and without financial means, they were part of a large and close-knit family in a strong faith community. Since Amanda was her parents’ first baby, they could devote all of their at- tention to her. Still, having to face this kind of challenge as hopeful new par- ents is almost unimaginable. Being swept into a complex and sophisticated medical system in the time needed to save this newborn’s life could be the best of luck—or maybe not. Amanda sailed through the catheter- ization without a hitch, and her parents consented to surgical placement of a shunt from a major artery to a tiny pul- monary vessel several days later. After surgery, she remained very blue because the arteries in her lungs were so small that they severely limited the amount of oxygen that her bloodstream could pick up. The medical team taking care of her included surgeons, intensivists, cardiol- ogists, nephrologists, infectious disease specialists, nurse practitioners, clinical nurse specialists, critical care bedside nurses, respiratory therapists, physical and occupational therapists, hospital chaplains, and social workers. Others also contributed to her care, including such stalwarts of the unit as nursing as- sistants and ward secretaries, who sup- ported family and staff alike. Over the next three months, her family came to know and to talk with all of us and became well versed in the lingo and details of what some call “chronic critical care.” They learned which alarms were worrisome and which could be listened to for a few minutes. They came to know the PICU staff on a first-name basis, met new res- idents as they rotated through, learned where the coffee pot was, and settled into a routine. Certain physicians were more optimistic than others, since we had as a group seen some infants whose pulmonary arteries were able to grow over time, given the chance. But Aman- da’s pulmonary blood flow did not im- prove. While she developed a personali- ty and wrapped us all around her little finger, she remained dependent on the ventilator and IV feeding and became steadily bluer. Any exertion caused her to get suddenly worse. Owing to the breathing tube, her parents hadn’t heard her cry since the day she was born, even when she made what they called a “cry face.” Another cardiac catheterization on her three-month birthday showed that further surgery would not help— there simply were no blood vessels big enough to work with. Failure to improve in a PICU is tan- tamount to going backward, and going slowly backward on a high-level of sup- port is worse, even if nothing dramatic is happening. The dynamics of working with complex diseases in a high-tech unit make this truth difficult to grasp. The teams are huge, and need to be in order to staff them with experts day and night, week after week. No surgeon, in- tensivist, or other specialist can be an intensive care soloist and continue to function. All are aware that consistency in staffing improves communication, keeps us from re-inventing the wheel, and keeps that wheel rolling forward— but complete consistency in manpower is impossible because we are all human. There is no such thing as a single physi- cian managing a case any more in today’s American ICU. The group must function together well to achieve good medical outcomes and to allow the peo- ple who orchestrate those outcomes to keep working in this environment. But any group is a group of individuals, all with their own perspectives, experi- ences, and viewpoints that are guided not only by past experience but also by the moment-to-moment work they are Finding Our Way by Kathryn Weise in practice

In Practice: Finding Our Way

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8 H A S T I N G S C E N T E R R E P O R T July-August 2004

The day Amanda was transferredto our Pediatric Intensive CareUnit (PICU), we communicat-

ed our anxiety, born of experience, bysidelong glances and terse descriptionsof her array of cardiac anomalies. “LikeJeremy’s, but worse. No main pul-monary trunk by echocardiogram, andthey couldn’t find good branch pul-monary arteries. She’ll need cardiaccatheterization this afternoon to see ifthey can find anything big enough toaccept a shunt.” To the pediatric inten-sivists, the bedside physicians of theICU, this brought up memories of sev-eral infants referred over the last fewyears. In the more successful cases,surgery and careful intensive care hadallowed us to send home children whowere still blue, but alive and active. Atthe other end of the spectrum were ahandful of children who had undergoneone or more attempts to send enoughblood to the lungs to support life, butwho died after a few days—or aftermany long months.

Cardiology and surgical groups ac-cepted Amanda into the unit, and wewent to work supporting her during theevaluation. She was mechanically venti-lated to control her breathing, crucial tofine tune the balance of blood flow be-tween her lungs and her body, and shereceived medications by constant infu-sion. We hoped that the specialists in-volved in her care would eventually beable to send her home. We also hopedthat her parents had been able to holdher and to see her awake before transfer,since it would be days before she wouldbe able to do the things a normal babywould do—take a deep breath, cry outloud, or wet a diaper that her parentscould change.

She wasn’t born lucky, with a heartlike hers, but she was born down theroad from one of the few centers in thecountry that could give her a chance atliving for more than a few days. Al-though her parents were only twentyyears old and without financial means,they were part of a large and close-knitfamily in a strong faith community.Since Amanda was her parents’ firstbaby, they could devote all of their at-tention to her. Still, having to face thiskind of challenge as hopeful new par-ents is almost unimaginable. Beingswept into a complex and sophisticatedmedical system in the time needed tosave this newborn’s life could be the bestof luck—or maybe not.

Amanda sailed through the catheter-ization without a hitch, and her parentsconsented to surgical placement of ashunt from a major artery to a tiny pul-monary vessel several days later. Aftersurgery, she remained very blue becausethe arteries in her lungs were so smallthat they severely limited the amount ofoxygen that her bloodstream could pickup. The medical team taking care of herincluded surgeons, intensivists, cardiol-ogists, nephrologists, infectious diseasespecialists, nurse practitioners, clinicalnurse specialists, critical care bedsidenurses, respiratory therapists, physicaland occupational therapists, hospitalchaplains, and social workers. Othersalso contributed to her care, includingsuch stalwarts of the unit as nursing as-sistants and ward secretaries, who sup-ported family and staff alike.

Over the next three months, herfamily came to know and to talk withall of us and became well versed in thelingo and details of what some call“chronic critical care.” They learned

which alarms were worrisome andwhich could be listened to for a fewminutes. They came to know the PICUstaff on a first-name basis, met new res-idents as they rotated through, learnedwhere the coffee pot was, and settledinto a routine. Certain physicians weremore optimistic than others, since wehad as a group seen some infants whosepulmonary arteries were able to growover time, given the chance. But Aman-da’s pulmonary blood flow did not im-prove. While she developed a personali-ty and wrapped us all around her littlefinger, she remained dependent on theventilator and IV feeding and becamesteadily bluer. Any exertion caused herto get suddenly worse. Owing to thebreathing tube, her parents hadn’t heardher cry since the day she was born, evenwhen she made what they called a “cryface.” Another cardiac catheterizationon her three-month birthday showedthat further surgery would not help—there simply were no blood vessels bigenough to work with.

Failure to improve in a PICU is tan-tamount to going backward, and goingslowly backward on a high-level of sup-port is worse, even if nothing dramaticis happening. The dynamics of workingwith complex diseases in a high-techunit make this truth difficult to grasp.The teams are huge, and need to be inorder to staff them with experts day andnight, week after week. No surgeon, in-tensivist, or other specialist can be anintensive care soloist and continue tofunction. All are aware that consistencyin staffing improves communication,keeps us from re-inventing the wheel,and keeps that wheel rolling forward—but complete consistency in manpoweris impossible because we are all human.There is no such thing as a single physi-cian managing a case any more intoday’s American ICU. The group mustfunction together well to achieve goodmedical outcomes and to allow the peo-ple who orchestrate those outcomes tokeep working in this environment. Butany group is a group of individuals, allwith their own perspectives, experi-ences, and viewpoints that are guidednot only by past experience but also bythe moment-to-moment work they are

Finding Our Way

by Kathryn Weise

in practice

H A S T I N G S C E N T E R R E P O R T 9July-August 2004

doing. A surgeon might remember therisky operation that went well in theend; an intensivist might remember theinfant who pulled through after monthson hellish levels of support; the bedsidenurse might remember most the gri-maces he watched despite giving mor-phine, as he changed dressings everyfour hours on a baby’s deep wound in-fection. These perspectives are commu-nicated to the parents verbally and non-verbally, even if we’re not always awareof it. Not surprisingly, we self-select foraggressiveness if we choose to work inthe ICU. We hope we can recognizewhen aggressive care is no longer appro-priate, but the strengths of the groupapproach can conspire against realizingthis hope. We can meet, we can confer,and we can try to understand eachother’s viewpoints for as long as wewish, but in the end we remain what weare—a bunch of individuals strugglingwith the give-and-take that our strangemarriage requires.

Amanda’s family gravitated towardthose whose message was closest to whatthey wanted or needed to hear. Positivecomments, even when more and moreheavily veiled in caution, were the mostavidly sought. What could be more nat-ural in such a fearful situation? Theyhad turned to us for hope all along, andseemed to develop a sense that since shehad weathered so many bad moments,bad predictions could not come true fortheir daughter. This became their per-spective, based on their experience.

When her surgical options ran out,the staff most trusted by her family rec-ommended forgoing further invasiveprocedures and promised to keep herfree from pain. We explained that shewould become even more blue, and thatsince lack of oxygen was uncomfortable,we would need to increase her mor-phine as her symptoms worsened inorder to manage her pain. We discussedhow, in situations like this where theburdens of medical care outweigh theknown benefits, it is acceptable, evenkind, to consider stopping everythingbut comfort care, and we explainedthat, yes, this would mean that shewould die sooner. We recommendednot resuscitating her when her heart

stopped beating. Amanda’s parents saidthey believed God was intimately in-volved in their and Amanda’s lives, andthat only God could make decisionsabout death.

Our hospital has a mechanism forwriting a unilateral DNR order, or inextreme circumstances for writing tolimit or discontinue support againstfamily wishes, but the process has beenvery rarely invoked. We hesitate tobreak trust with families. While not allphysicians in our larger group believe ina role for bioethicists in medical deci-sionmaking, we do manage to bring intheir expertise either directly or indi-rectly. We also have experience in pedi-atric palliative care within our group ofintensivists, and try to bring in symp-tom control concepts and long-termgoal planning early—again directly orindirectly—when the need is recog-nized. But these mechanisms, while inplace, do not answer every issue we faceas a group.

Amanda’s family and the medicalstaff agreed on every intervention untilthe end. But when we ran out of rea-sonable aggressive measures to offer, adivide developed. We understood howwe had arrived at this juncture, but feltthat what we were being asked to dowas no longer right. Her family felt thattheir demands of us were appropriatebecause God would make the ultimatedecisions. For those physically doingthings to Amanda hour by hour, andneeding to give her ever more sedationto avoid pain—hers and ours—her par-ents’ demands seemed plainly wrong.Expert opinion demands that we doonly what is medically indicated, andthat we balance burdens and benefits,while not abandoning the patient tosuffering. The quandary is how to pro-vide support to all involved when allare not in agreement about medical in-dications, suffering, and who can de-cide. We must work in a group to pro-vide the care that we offer. For Aman-da’s sake, individuals continued to try tobe consistent messengers, but as part ofa team no single person among us wasable to act alone.

Amanda died on the ventilatorshortly after midnight a few weeks later,

during a clearly vain, very brief resusci-tation effort that was stopped as soon asher parents arrived back at her bedside.They held her after she died, said aprayer with the hospital chaplain,thanked the intensivist at the bedsidefor trying to save her, and thanked thenurses and therapists for their monthsof gentle support. The intensivist wasglad that Amanda’s suffering—per-ceived to be there despite near-comalevels of sedation—was over. The suffer-ing of the staff, and of her parents,would last longer.

What an odd thing we have created.We can save so many more childrennow than we could when our systems ofcare were simpler, but less effective. Wecan offer more hope than before, but weare still learning how to nurture hopewithin reason—if that is possible. Itfeels at times that we work in a medicalculture that creates endless expectationsof cure. Couple this with a national cul-ture in which we expect that no limitswill be imposed by others, and familiesseem to demand more and more. Butthey are only demanding what we as amedical culture implicitly or explicitlyoffer.

What we do is phenomenally costlyin terms of money, time, and humanity,but we are not comfortable placing aprice on the life in our hands at the bed-side. The dynamics of tertiary care de-mand that we pay attention not only towhat we do minute to minute, but thatwe also pay attention to creating andcommunicating reasonable expectationsand goals—ours, as well as those of thepatients and families for whom we care.If we fail to do that effectively, we riskpulling families into our own needs andhopes. I dream of a system that wouldencourage uniting a pediatrician whohas known a family for many years withthe specialized skills that we can providein the ICU. We are not there yet. Weare still working, together, trying to findour way.