During the first recess5, Campbell takes me to a conference room for privacy and buys me a Coke that isn’tcold. “So,” he says. “What do you think so far?”
Being in the courtroom is weird6. It’s like I’ve turned into a ghost—I can watch what’s going on, but even if Ifelt like speaking no one would be able to hear me. Add to that the very bizarre way I have to listen toeveryone talk about my life as if they can’t see me sitting right there, and you’ve landed in my surreal littlecorner of earth.
Campbell pops open his 7 UP and sits down across from me. He pours a little into a paper cup for Judge, andthen takes a good long drink. “Comments?” he says. “Questions? Unadulterated praise for my skillfullitigation?”
I shrug7. “It’s not like I expected.”
“What do you mean?”
“I guess I figured when it started, I’d know for sure that I was doing the right thing. But when my mom wasup there, and you were asking her all those questions…” I glance up at him. “That part about it not beingsimple. She’s right.”
What if I was the one who was sick? What if Kate had been asked to do what I’ve done? What if one of thesedays, some marrow8 or blood or whatever actually worked, and that was the end? What if I could look back onall this one day and feel good about what I did, instead of feeling guilty? What if the judge doesn’t think I’mright?
What if he does?
I can’t answer a single one of these, which is how I know that whether I’m ready or not, I’m growing up.
“Anna.” Campbell gets up and comes around to my side of the table. “Now is not the time to start changingyour mind.”
“I’m not changing my mind.” I roll the can between my palms. “I think I’m just saying that even if we win,we don’t.”
When I was twelve I started baby-sitting for twins who live down the street. They’re only six, and they don’tlike the dark, so I usually wind up sitting between them on a stool that’s shaped like the stubby foot of anelephant, toenails and all. It never fails to amaze me how quickly a kid can shut off an energy switch—they’llbe climbing the curtains and bam, five minutes later, they’re conked out. Was I ever like that? I can’tremember, and it makes me feel ancient.
Every now and then one of the twins will fall asleep before the other one. “Anna,” his brother will say, “howmany years till I can drive?”
“Ten,” I tell him.
“How many years till you can drive?”
“Three.”
Then the talk will split off like the spokes9 of a spiderweb—what kind of car will I buy; what will I be when Igrow up; does it suck to get homework every night in middle school. It’s totally a ploy10 to stay up a little bitlater. Sometimes I fall for it, mostly I just make him go to sleep. See, I get a round hollow spot in my bellyknowing I could tell him what’s coming, but also knowing it would come out sounding like a warning.
The second witness Campbell calls is Dr. Bergen, the head of the medical ethics11 committee at ProvidenceHospital. He has salt-and-pepper hair and a face dented13 in like a potato. He is smaller than you’d expect, too,given the fact that it takes him just short of a millennium14 to recite his credentials15.
“Dr. Bergen,” Campbell starts, “what’s an ethics committee?”
“A diverse group of doctors, RNs, clergy16, ethicists, and scientists, who are assigned to review individualcases to protect patients’ rights. In Western Bioethics, there are six principles we try to follow.” He ticks themoff on his fingers. “Autonomy, or the idea that any patient over age eighteen has the right to refuse treatment;veracity, which is basically informed consent; fidelity—that is, a health-care provider fulfilling his duties;beneficence, or doing what’s in the best interests of the patient; nonmaleficence—when you can no longer dogood, you shouldn’t do harm…like performing major surgery on a terminal patient who’s 102 years old; andfinally, justice—that no patient should be discriminated17 against in receiving treatment.”
“What does an ethics committee do?”
“Generally, we’re called to convene18 when there’s a discrepancy19 about patient care. For example, if aphysician feels it’s in the patient’s best interests to go on with extraordinary measures, and the family doesn’t—or vice20 versa.”
“So you don’t see every case that passes through a hospital?”
“No. Only when there are complaints, or if the attending physician asks for a consultation21. We review thesituation and make recommendations.”
“Not decisions?”
“No,” Dr. Bergen says.
“What if the patient complaining is a minor22?” Campbell asks.
“Consent isn’t necessary until age thirteen. We rely on parents to make informed choices for their childrenuntil that point.”
“What if they can’t?”
He blinks. “You mean if they’re not physically23 present?”
“No. I mean if there’s another agenda they’re adhering to, that in some way keeps them from making choicesin the best interests of that child?”
My mother stands up. “Objection,” she says. “He’s speculating.”
“Sustained,” Judge DeSalvo replies.
Without missing a beat, Campbell turns back to his witness. “Do parents control their children’s health-caredecisions until age eighteen?”
Well, I could answer that. Parents control everything, unless you’re like Jesse and you do enough to upsetthem that they’d rather ignore you than pretend you actually exist.
“Legally,” Dr. Bergen says. “However, once a child reaches adolescence24, although they can’t give formalconsent, they have to agree to any hospital procedure—even if their parents have already signed off on it.”
This rule, if you ask me, is like the law against jaywalking. Everyone knows you’re not supposed to do it, butthat doesn’t actually stop you.
Dr. Bergen is still talking. “In the rare instance where a parent and an adolescent patient disagree, the ethicscommittee weighs several factors: whether the procedure is in the adolescent’s best interests, the risk/benefitscenario, the age and maturity25 of the adolescent, and the argument he or she presents.”
“Has the ethics committee at Providence12 Hospital ever met regarding the care of Kate Fitzgerald?” Campbellasks.
“On two occasions,” Dr. Bergen says. “The first involved allowing her to enter a trial for peripheral26 bloodstem cell transplant in 2002, when her bone marrow transplant and several other options had failed. Thesecond, more recently, involved whether or not it would be in her best interests to receive a donor27 kidney.”
“What was the outcome, Dr. Bergen?”
“We recommended that Kate Fitzgerald receive a peripheral blood stem cell transplant. As for the kidney, ourgroup was split on that decision.”
“Can you explain?”
“Several of us felt that, at this point, the patient’s health care had deteriorated28 to a point where major invasivetransplant surgery was going to do more harm than good. Others believed that without a transplant, shewould still die, and therefore the benefits outweighed29 the risk.”
“If your team was split, then who gets to decide what will ultimately happen?”
“In Kate’s case, because she is still a minor, her parents.”
“During either of the times that your committee met regarding Kate’s medical treatment, did you discuss therisks and benefits to the donor?”
“That wasn’t the issue at stake—”
“What about the consent of the donor, Anna Fitzgerald?”
Dr. Bergen looks right at me, sympathetic, which it turns out is worse even than him thinking I’m a horribleperson for filing this petition in the first place. He shakes his head. “It goes without saying that no hospital inthe country is going to take a kidney out of a child who doesn’t want to donate it.”
“So, theoretically, if Anna was fighting this decision, the case would most likely land on your desk?”
“Well—”
“Has Anna’s case landed on your desk, Doctor?”
“No.”
Campbell advances toward him. “Can you tell us why?”
“Because she isn’t a patient.”
“Really?” He pulls a stack of papers out from his briefcase30, and hands them to the judge, and then to Dr.
Bergen. “These are Anna Fitzgerald’s hospital records at Providence Hospital for the past thirteen years. Whywould there be records for her, if she wasn’t a patient?”
Dr. Bergen flips31 through them. “She’s had several invasive procedures,” he admits.
Go, Campbell, I think. I am not one to believe in knights33 who ride in to rescue damsels in distress34, but I bet itfeels a little like this. “Doesn’t it strike you as odd that in thirteen years, given the thickness of this file andthe fact it exists in the first place, the medical ethics committee never once convened35 to discuss what wasbeing done to Anna?”
“We were under the impression that donation was her wish.”
“Are you telling me that if Anna had previously36 said she didn’t want to give up lymphocytes or granulocytesor cord blood or even a bee sting kit37 in her backpack—the ethics committee would have acted differently?”
“I know where you’re going with this, Mr. Alexander,” the psychiatrist38 says coldly. “The problem is that thiskind of medical situation hasn’t existed before. There is no precedent39. We’re trying to feel our way as best wecan.”
“Isn’t your job as an ethics committee to look at situations that haven’t existed before?”
“Well. Yes.”
“Dr. Bergen, in your expert opinion, is it ethically40 right for Anna Fitzgerald to have been asked to donateparts of her own body repeatedly for thirteen years?”
“Objection!” my mother calls out.
The judge strokes his chin. “I want to hear this.”
Dr. Bergen glances at me again. “Quite frankly41, even before I knew that Anna didn’t want to be a participant,I voted against her donating a kidney to her sister. I don’t believe Kate would live through the transplant, andtherefore Anna would undergo a serious operation for no reason at all. Up until this point, however, I thinkthat the risk of the procedures was small, compared to the benefit the family as a whole received, and Isupport the choices the Fitzgeralds made for Anna.”
Campbell pretends to consider this. “Dr. Bergen, what kind of car do you drive?”
“A Porsche.”
“Bet you like it.”
“I do,” he says guardedly.
“What if I told you that you have to give up your Porsche before you leave this courtroom, because thataction will save Judge DeSalvo’s life?”
“That’s ridiculous. You—”
Campbell leans in. “What if you had no choice? What if, today, psychiatrists42 simply have to do whateverlawyers decide is in the best interests of others?”
He rolls his eyes. “In spite of the high drama you’re alluding43 to, Mr. Alexander, there are basic donor rights,safeguards put into place in medicine, so that the greater good doesn’t steamroll the pioneers who help createit. The United States has a long and nasty history of the abuse of informed consent, which is what led to lawsrelating to Human Subjects Research. It keeps people from being used as experimental lab rats.”
“Then tell us,” Campbell says, “how the hell did Anna Fitzgerald slip through the cracks?”
When I was only seven months old, there was a block party in our neighborhood. It’s just as bad as you’rethinking: Jell-O molds and towers of cheese cubes and dancing in the street to music piped out of someone’sliving room stereo. I, of course, have no personal recollection of any of this—I was plopped down in one ofthose walkers they made for babies before babies started overturning them and cracking their heads open.
At any rate, I was in my walker, tooling around between the tables and watching the other kids, so the storygoes, when I sort of lost my footing. Our block is canted at an angle, and suddenly the wheels were movingfaster than I could make them stop. I whizzed past adults, under the barricade44 the cops had put up at the endof the road to shut it off to traffic, and I was heading right for a main drag full of cars.
But Kate came out of nowhere and ran after me. She somehow managed to grab me by the back of my shirtmoments before I got hit by a passing Toyota.
Every now and then, someone on the block brings this up. Me, I remember it as the time she saved me,instead of the other way around.
My mother gets her first chance to play lawyer. “Dr. Bergen,” she says, “how long have you known of myfamily?”
“I’ve been at Providence Hospital for ten years now.”
“In those ten years, when some aspect of Kate’s treatment was presented to you, what did you do?”
“Come up with a plan of action that was recommended,” he says. “Or an alternate, if possible.”
“When you did, at any point in your report did you mention that Anna shouldn’t be a part of it?”
“No.”
“Did you ever say this would hurt Anna considerably45?”
“No.”
“Or put her in grave medical danger herself?”
“No.”
Maybe it’s not Campbell, after all, who will turn out to be my white knight32. Maybe it’s my mother.
“Dr. Bergen,” she asks, “do you have kids?”
The doctor looks up. “I have a son. He’s thirteen.”
“Have you ever looked at these cases that come to the medical ethics committee and put yourself in apatient’s shoes? Or better yet, a parent’s shoes?”
“I have,” he admits.
“If you were me,” my mother says, “and the medical ethics committee handed you back a piece of paper witha suggested course of action that would save your son’s life, would you question them further…or would youjust jump at the chance?”
He doesn’t answer. He doesn’t have to.
Judge DeSalvo calls a second recess after that. Campbell says something about getting up and stretching mylegs. So I start to follow him out, walking right past my mother. As I pass by, I feel her hand on my waist,tugging down my T-shirt, which is riding up in the back. She hates the spaghetti-strap girls, the ones whocome to school in halters and low-riders, like they’re trying out as dancers in a Britney Spears video insteadof going to math class. I can almost hear her voice: Please tell me that shrank in the wash.
She seems to realize mid-tug that maybe she shouldn’t have done this. I stop, and Campbell stops, too, andher face goes bright red. “Sorry,” she says.
I put my hand over hers and tuck my shirt into the back of my jeans where it should be. I look at Campbell.
“Meet you outside?”
He’s giving me a look that has Bad Idea written all over it, but he nods and heads down the aisle46. Then mymother and I are nearly alone in the courtroom. I lean forward and kiss her on the cheek. “You did reallygreat up there,” I tell her, because I don’t know how to say what I really want to: that the people you love cansurprise you every day. That maybe who we are isn’t so much about what we do, but rather what we’recapable of when we least expect it.
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1
venom
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| n.毒液，恶毒，痛恨 | |
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vault
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| n.拱形圆顶，地窖，地下室 | |
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eyelids
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| n.眼睑( eyelid的名词复数 )；眼睛也不眨一下；不露声色；面不改色 | |
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decided
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| adj.决定了的，坚决的；明显的，明确的 | |
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recess
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| n.短期休息，壁凹（墙上装架子，柜子等凹处） | |
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weird
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| adj.古怪的，离奇的；怪诞的，神秘而可怕的 | |
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shrug
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| v.耸肩(表示怀疑、冷漠、不知等) | |
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marrow
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| n.骨髓；精华；活力 | |
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spokes
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| n.（车轮的）辐条( spoke的名词复数 )；轮辐；破坏某人的计划；阻挠某人的行动 | |
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ploy
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| n.花招，手段 | |
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ethics
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| n.伦理学；伦理观，道德标准 | |
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providence
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| n.深谋远虑，天道，天意；远见；节约；上帝 | |
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dented
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| v.使产生凹痕( dent的过去式和过去分词 )；损害；伤害；挫伤（信心、名誉等） | |
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millennium
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| n.一千年，千禧年；太平盛世 | |
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credentials
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| n.证明，资格，证明书，证件 | |
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clergy
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| n.[总称]牧师，神职人员 | |
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discriminated
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| 分别，辨别，区分( discriminate的过去式和过去分词 )； 歧视，有差别地对待 | |
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convene
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| v.集合，召集，召唤，聚集，集合 | |
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discrepancy
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| n.不同；不符；差异；矛盾 | |
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vice
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| n.坏事；恶习；[pl.]台钳，老虎钳；adj.副的 | |
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consultation
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| n.咨询；商量；商议；会议 | |
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minor
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| adj.较小(少)的，较次要的；n.辅修学科；vi.辅修 | |
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physically
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| adj.物质上，体格上，身体上，按自然规律 | |
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adolescence
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| n.青春期，青少年 | |
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maturity
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| n.成熟；完成；(支票、债券等)到期 | |
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peripheral
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| adj.周边的，外围的 | |
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donor
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| n.捐献者；赠送人；(组织、器官等的)供体 | |
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deteriorated
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| 恶化，变坏( deteriorate的过去式和过去分词 ) | |
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outweighed
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| v.在重量上超过( outweigh的过去式和过去分词 )；在重要性或价值方面超过 | |
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briefcase
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| n.手提箱，公事皮包 | |
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flips
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| 轻弹( flip的第三人称单数 )； 按（开关）； 快速翻转； 急挥 | |
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knight
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| n.骑士，武士；爵士 | |
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knights
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| 骑士； （中古时代的）武士( knight的名词复数 )； 骑士； 爵士； （国际象棋中）马 | |
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distress
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| n.苦恼，痛苦，不舒适；不幸；vt.使悲痛 | |
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convened
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| 召开( convene的过去式 )； 召集； （为正式会议而）聚集； 集合 | |
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previously
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| adv.以前，先前（地） | |
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kit
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| n.用具包，成套工具；随身携带物 | |
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psychiatrist
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| n.精神病专家；精神病医师 | |
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precedent
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| n.先例，前例；惯例；adj.在前的，在先的 | |
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ethically
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| adv.在伦理上，道德上 | |
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frankly
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| adv.坦白地，直率地；坦率地说 | |
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psychiatrists
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| n.精神病专家，精神病医生( psychiatrist的名词复数 ) | |
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alluding
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| 提及，暗指( allude的现在分词 ) | |
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barricade
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| n.路障，栅栏，障碍；vt.设路障挡住 | |
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considerably
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| adv.极大地；相当大地；在很大程度上 | |
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aisle
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| n.（教堂、教室、戏院等里的）过道，通道 | |
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