WHEN YOU ARE A KID you have your own language, and unlike French or Spanish or whatever you startlearning in fourth grade, this one you’re born with, and eventually lose. Everyone under the age of seven isfluent in Ifspeak; go hang around with someone under three feet tall and you’ll see. What if a giantfunnelweb spider crawled out of that hole over your head and bit you on the neck? What if the only antidotefor venom was locked up in a vault on the top of a mountain? What if you lived through the bite, but couldonly move your eyelids and blink out an alphabet? It doesn’t really matter how far you go; the point is thatit’s a world of possibility. Kids think with their brains cracked wide open; becoming an adult, I’ve decided, isonly a slow sewing shut.
During the first recess, 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 weird. 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 shrug. “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 marrow 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 spokes 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 ploy 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 ethics committee at ProvidenceHospital. He has salt-and-pepper hair and a face dented in like a potato. He is smaller than you’d expect, too,given the fact that it takes him just short of a millennium to recite his credentials.
“Dr. Bergen,” Campbell starts, “what’s an ethics committee?”
“A diverse group of doctors, RNs, clergy, 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 discriminated against in receiving treatment.”
“What does an ethics committee do?”
“Generally, we’re called to convene when there’s a discrepancy 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 vice 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 consultation. We review thesituation and make recommendations.”
“Not decisions?”
“No,” Dr. Bergen says.
“What if the patient complaining is a minor?” 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 physically 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 adolescence, 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 maturity of the adolescent, and the argument he or she presents.”
“Has the ethics committee at Providence 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 peripheral 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 donor 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 deteriorated 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 outweighed the risk.”
“If your team was split, then who gets to decide what will ultimately happen?”
“In Kate............