ANYTOWN, USA — She would have a tough time, she thought, but she'd get through to this family sitting before her. As head of a hospital pediatric intensive-care unit, she considered herself highly skilled at communicating hope when it existed, futility when it didn't. Hers wasn't an easy task, but she'd been doing it for 15 years. Sometimes she saw miracles, sometimes she saw kids pull through, but she'd also seen lots of misery. There had been no shortage of misery.

This case among them. From the start, the hospital neurosurgeons knew the family's 10-year-old daughter had no chance. From the start, they knew they couldn't stop the malignant tumor growing in her brain.

The girl no longer was simply hopeless. The girl had died.

They'd repeatedly made that clear as the girl deteriorated. Dr. M — as she will be called in this account — had talked many times with the family. She hadn't shirked the situation. This was part of what she did; this was central.

In months past, the messages had always been about futility. When to limit care, when to withdraw because they couldn't do more. There was a difference now, though. The girl no longer was simply hopeless. The girl had died.

She still lay on an ICU bed hooked to a life-support system. But she met all the legal and medical criteria for death. This wasn't a deep coma, this wasn't a vegetative state. This was death.

That's what Dr. M now told the family sitting before her. Then told them again, and again. On and on they talked for two hours. Eventually, it became clear to Dr. M that she was making no progress.

No one told the doctor she couldn't act; no one threatened to sue. Only the charge of murder hung in the air.

OK, she decided. We will dispense with this effort at shared decision-making. She would stop this herself; she would relieve the family of responsibility. "There's no decision to make," Dr. M declared. "Your daughter is dead. I'm going to pull the plug. Who do you want to be here?"

It didn't work. If you turn off the respirator, the girl's mother responded in no uncertain terms, it would be murder. We couldn't live with that. Our Bible says you don't die before your time.

There they all sat, the mother staring wild-eyed at Dr. M, the family's pastor nodding his head in agreement. No one flatly told the doctor she couldn't act; no one threatened a lawsuit. Only the charge of murder hung in the air.

"I was," Dr. M recalled later,"really quite taken aback."

So, it's fair to say, were a lot of other people.

The medical-bioethics community, after all, is full of hot spots these days. Topics for debate abound and multiply: patient autonomy, physician paternalism, definitions of futility, finite resource allocation, needs of communities, rights of patients — like a prism, each theme raises others, scattering new lines of questions across the bioethical spectrum. Usually, the issues are ambiguous and debatable, but even when they aren't — even when a cadaver occupies a hospital's critical-care bed — answers don't come easily.

That much the medical staff at a respected hospital in a certain mid-size American city has learned firsthand. Only now can this story be told, because it is over. For reasons of privacy, there still can be no names mentioned or locales identified. Only the facts can be related. The facts, and the many questions they raise.

A YOUNG GIRL'S HOPELESS CONDITION
It began many months ago with a young girl's hopeless diagnosis. The surgeons at Dr. M's hospital declined to operate, suggesting comfort as the only appropriate treatment. The girl's family instead went out of state to another medical center, where doctors operated twice, extending the patient's life but effecting no cure. When there was nothing more to do, the girl returned to her hometown and the original hospital.

There she gradually sank into a coma. From neural imaging, doctors could see the inside of her head being taken over by cancer. By fall, she'd become totally unresponsive. By year's end, she'd lost the ability to maintain her airway. Yet the family — certain God would perform a miracle, backed by the pastor of their fundamentalist church, financed by private medical insurance — insisted that doctors put her on a ventilator and do a tracheotomy.

They counseled, they urged; had 'dialogues' and 'negotiations' — as the girl's eyes, pushed by the tumor, bulged grotesquely from her head.

"At this point," observed a pediatrician-bioethicist at the hospital — Dr. A in this account — "surgeons could have said, 'This isn't medically indicated, we're not going to do it.' But they recognized the family would find someone to do it, so they decided to work with the family rather than against."

Work with them they did. They counseled, they explained, they urged; they had "dialogues" and "negotiations"; they brought in a born-again Christian physician; they gathered in weekly ethics conferences. As they did so, the girl's eyes, pushed by the brain tumor, were bulging ever more grotesquely from her head.

She was by now in constant crisis; she was suffering repeated cardiac arrests. Occasionally, though, doctors could detect signs of brain activity and independent efforts to breathe, so she didn't meet the strict definition of brain-stem death.

Then one day she did. Doctors saw no corneal reflex when they poked her eye with a cotton tip. They detected no blood flow to the brain, no responsive respiratory cells, no sign of brain-stem function.

"We don't believe in brain death," the girl's mother replied.

"By anybody's criteria in the United States," observed Dr. A, "that's dead." The hospital doctors declared brain death and wrote it into the patient's chart. "Well, that's it," they told the family.

The family thought otherwise. God might do a miracle, or God might take their daughter, but either way, it was God's decision, not a doctor's.

"We don't believe it," the girl's mother replied. "We don't believe in brain death."

DEEPENING MORAL, LEGAL QUAGMIRE
With those words, a devoutly religious fundamentalist family pulled one more hospital deep into an ever-thickening moral and legal quagmire. Questions about the rights of doctors to refuse requested treatment haunt the medical world at least as much as those about assisted suicide. Court decisions offer varied answers. So do physicians and bioethicists.

Surely doctors are moral agents, not automatons toiling in a value-free world. Surely doctors have responsibilities to the broader community. Surely doctors shouldn't waste precious medical resources.

In New Jersey, doctors can't declare brain death if it "would violate the personal religious beliefs of the individual."

Yet why should they have all the power, why should they get to impose their beliefs? On what basis can they decide when to stop treatment? Is not futility a value judgment? Is not futility a mask and moral excuse for rationing? Is not rationing in turn a public policy rather than a medical decision? What of religious freedom? However irrational the rule of faith, does it not deserve protection?

In such cases, death is declared only when the heart and lungs stop, which can long be delayed by a respirator.

This last is a particularly tricky question, for definitions of death are intricately entwined with matters of religion. Even doctors allow that death isn't just a medical condition; in certain ways, it's a social compromise, a legal construct.

New Jersey law, for example, now includes a religious exemption clause to"accommodate personal religious beliefs" about a declaration of death. Physicians there can't declare brain death if "such a declaration would violate the personal religious beliefs of the individual." In such cases, death is declared only when a patient's heart and lungs stop, an event that can long be delayed by a respirator.

Death, therefore, is an arbitrary thing, a matter of philosophy. There are those who would say it doesn't arrive until every last cell in the body has expired. Yet individual cells live on in many an officially dead body.

They lived on, for example, in the body of the girl declared brain-dead at Dr. M's hospital. Her body hadn't undergone extreme dehydration, which meant certain pituitary gland cells were still producing a hormone that regulates the kidney's reabsorption of water. Her body hadn't undergone extreme temperature instability, which meant certain hypothalamus cells were still performing regulatory tasks in her brain.

"Death isn't that simple," sighed Dr. M. "It's more complex than we would want."

COULDN'T HALT CARE OF A DEAD PATIENT
Nonetheless, it was present: a corpse occupied a much-needed bed in her pediatric ICU. Here they were talking about cutting costs, Dr. M reflected, but she couldn't put an end to the care of a dead patient. She wondered how many children couldn't be immunized because of this expense; she wondered how much higher all their insurance premiums were being driven.

What to do, though? There the mother sat, between Dr. M and the respirator, growing more agitated each time someone suggested her daughter had died.

Between Dr. M and the respirator the mother sat, agitated at each suggestion her daughter had died.

"I envisioned what would happen if I acted," Dr. M recalled. "If I did, I would have to get between the mother and her daughter, literally. Brute force, restraint, security guards. It was going to be physical; it was going to be my will against the mother's.... At that point, call it lost courage, I wondered what I was trying to accomplish."

Brute force, restraint, security guards — it was going to be physical — my will against the mother's ...

So too did others at the hospital. No longer did cerebral bioethical debates matter. Who would flip the switch mattered; who would overpower this mother. No one stepped forward. Instead, rejecting one appalling prospect, the hospital staff chose another: They offered the family the option of taking their daughter's body home, hooked to a life-support system.

This the family chose to do one cold winter day. There the body came to be attended by nutritionists, chiropractors and round-the-clock nurses, all paid by private insurance, all instructed to perform CPR in a respiratory crisis. "We notified the insurance company," Dr. A observed. "Yes, they did seem to understand that the former patient had been declared dead."

Many at the hospital expressed outrage. Also raising their voices were various members of a deeply divided bioethical community, who soon began heatedly debating the matter on Internet forums and elsewhere. One called it "an unjustifiable act" to force a ventilator disconnect; one called it "absolutely absurd" to send a dead body home. One talked of the "psychological harm and indignity" coercion would bring; one talked of "insurance fraud" by those billing for care of a cadaver. Through it all, month after month, the girl's body lay wrapped in tubes, surrounded by a family reading to it from the Scriptures.

OCCASIONALLY, HOSPITAL STAFFERS HEARD reports: The girl had stabilized; the girl jerked her foot when treated for an ingrown toenail; the girl's eyes no longer were bulging from her head. "If these machines were hooked up to a dead person," the girl's mother asked a family friend, "would this be happening? She's responding to us. How could we not do everything for her?"

Spinal cord reflex and brain liquefaction could easily explain such events, Dr. A in turn pointed out. Nonetheless, he allowed, it was true: "She has been improving ever since she died."

"It's true," he admitted: "She's been improving ever since she died."

One day the girl's mother succeeded in getting another hospital to "admit" the body for a bronchoscopy to remove obstructing tissue that made ventilation difficult. Then came a second such admission. When staffers at this hospital finally caught on, they grew agitated, and by letter quickly informed the family they wouldn't accept their daughter anymore because she was dead.

14 months after her death had been declared, the girl's heart at last ceased beating.

The end — more precisely, the final end — came one early winter morning some 14 months after brain death had first been declared. The girl's heart, despite her relatives' desperate last hours of manual ventilating, at last ceased beating.

The family called 911, paramedics tried CPR, hospital emergency room doctors attempted resuscitation, and then it was over. A double rainbow spanned a bright blue sky the day of the girl's funeral. "The mother now knew she was 'gone,'" a family friend reported. "She didn't decide. God decided."

Such episodes are not unheard of; we have witnessed this before, report some who walk the confidential corridors of the bioethics world. Causes abound: fear of lawsuits, conflict and bad publicity; respect and compassion for

The mother now knew she was gone. "She didn't decide. God decided."

individuals; wariness about power; concern over HMO cost-containment abuses; confusion and ambivalence. Doctors and bioethicists, accustomed to moral quandaries, usually push on. This one, though, has given them some pause.

"Not that this is new," observed Dr. A, "but for some reason, this case has gotten to people."

Added Dr. M: "When I think about it, I'm still astonished that I chose what I did in this case."