An Education in Death

By DAVID VAN BIEMA

+ In the sun-dappled Norman Rockwell vision of America, the concept of in loco parentis might be best embodied by a freckled kid handing a teacher a note from home. "I can't be at school with my child," the letter might read, "so please take care of him. If he gets stung by a bee, here's the medication to give him. Don't make him eat onions at lunch, since he has a food allergy. I give over my authority to you. Please do for him as I would do."

After a fashion, that was also the nature of the letter that went out on July 29 to the Lewiston, Maine, school about Corey Brown, a pupil at the system's Farwell School. But there was nothing Rockwellian about it. The note, written on behalf of Corey's mother Linda Lafrance by Corey's pediatrician, Richard J. Marsh, read, "I am writing . . . to ask you to honor the medical order to 'Do Not Resuscitate.' " That is, it explained, should Corey's lungs cease to work, do for Corey as Lafrance would do: let her die.

In the furor that followed, Lewiston learned that Corey, 12, suffers from spastic cerebral palsy and progressive scoliosis. As these conditions have worsened, ever more frequent cases of pneumonia related to them have threatened her with possible pulmonary arrest. Her doctor says the scoliosis will eventually kill her by slowly constricting her vital organs. The doctor's note was alerting the teachers that Lafrance preferred the quicker, less painful death, and hoped they would too.

"Do not resuscitate" notices, or DNRs, are a form of passive euthanasia well known and almost always honored by hospitals. But DNRs issued to schools are far less routine, and the ethics and law surrounding them are largely uncharted territory. The reaction on the part of Corey's teachers was horror. "This turns my insides upside down," said Crystal Ward, the head of the local teachers' union. Says Pat Lemaire, a longtime kindergarten instructor: "A school is not a place where we make those kinds of decisions. It's not our training -- and frankly, I don't want it to be my training." Yet Lafrance maintained her request, backed by Dr. Marsh. Says he: "I live in a world that sometimes deals with 'Do not resuscitate.' "

In good New England fashion, Lewiston held an open-school committee meeting last week to address the question. The teachers were worried that no one would be able to tell if one of Corey's seizures was minor (help her) or had shut down her lungs (let her alone). But she is already watched at school by a ! registered nurse assistant, who could be expected to make the call. Other problems were far more tangled. Under federal law, says Yale Law School professor Robert A. Burt, schools must educate children with disabilities to "the maximum extent appropriate," along with their non-handicapped peers. Moreover, many state statutes hold that they must accede to parents' wishes "unless they can demonstrate that they are abusive or against the best interests of the child," a position that the school district has declined to use in its defense. "On the other hand," continues Burt, "the school might argue that the kind of burden implementing these orders imposes on school personnel makes them inappropriate in a mainstream setting." If the case went to court, he suggests, the district might end up providing Corey with home tutoring.

That is an option her mother rejects. The Lafrance living room looks even smaller than it really is, crowded with a hospital bed, IV stands and automatic drip feeders for Corey, who sits in a wheelchair between two recliners that face the TV. She is a terribly frail girl, legs in braces and arms hanging limp from her shoulders. She cannot speak; but she can smile or cry, and has made it abundantly clear that along with cotton candy and the color purple, she enjoys the regular music and art classes she attends at Farwell, as well as the Bingo games held for disabled students. To deprive her of these few joys would be cruel, says Lafrance, 39. "It's not like I want her to die in the classroom among all those people," says Lafrance. She points out that Corey could be taken to the nurse's office to spare her classmates' feelings. Then hurt breaches her Yankee reserve, and her voice breaks. " I'd rather have her go like that than have her spine crush her to death."

The school committee delivered its decision after last Monday's session. For now, Corey's teachers will not be expected to comply with the DNR order. But by unanimous vote, the board pledged to re-examine the larger policy guiding that ruling, which was framed years ago to address relatively simple questions of first aid, and to take up the issue again within two months. People are making an effort to be conciliatory. Says Dr. Gordon Smith of the Maine Medical Association, who knows both the issue and the players: "It's a small state, and generally we're able to work these things out rather than leave it up to a judge."

With reporting by Massimo Calabresi/Lewiston