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Rewriting the Final Chapter, by Susan Lonkevich

As medicine advances, the choices associated with end-of-life care grow more complex -- especially when patients or their families clash with doctors, the state, and occasionally each other, over when to treat and when to let go.

Dr. Neville Strumpf, associate professor in Penn's School of Nursing, is musing over a topic that has troubled her during her more than 25 years in nursing. "We never talk about ending lives -- I mean ending them well," she says. "Instead, we talk about saving them, or intervening, or buying time. There's a language of promoting cure or continuing to intervene as opposed to doing what's reasonable. What kind of quality of life, what kind of level of function are we trying to promote and advocate?" Strumpf asks. "Those will be the crucial issues in the 21st century." Already, they are at the heart of increasingly frequent debate in the courts, in hospitals, and even within families.
    Dying was once a relatively quick and private affair. Unencumbered by pickets and court battles, respirators and release forms, it was pretty much left up to the Fates or divine power. Until about World War II, when a person got sick, he or she either recuperated or passed away -- almost always at home. Today, when people die, it's usually in a hospital or nursing home, and many critically-ill patients can be sustained for months, even years, linked to a labyrinth of tubes and equipment.
    Raising awareness of how we exit life and how we can better care for the terminally ill was the goal of a two-day conference, "Families on the Frontier of Dying," hosted in June by the University of Pennsylvania Health System's Center for Bioethics. Dr. Arthur Caplan, the center's director, and Dr. Sally Nunn, associate director of its outreach program, were co-chairs, along with Dr. Ronald Cranford, of the Center for Bioethics at the University of Minnesota. But just as the conference title suggests, the spotlight fell not on the experts, but on the families -- some involved in landmark court cases and others who spoke publicly for the first time about their experiences. Despite their varied accounts, some common themes emerged, notably the need for better communication from doctors, education for judges about what it means to be terminally ill, and medical decision making centered around patients and families. Perhaps most of all, their stories illuminate our society's conflicted attitudes toward dying.
    Nancy Cruzan's gravestone is marked with three dates. In between the day she entered this world and the day she died is the day she actually departed: January 11, 1983. That was the day, says her sister, Chris Cruzan White, that "I got that phone call -- you know, the one that shapes your life forever, the beginning of a nightmare."
    It was a car wreck. Although emergency personnel were able to restart Nancy Cruzan's heart, the attending physician remarked that he was concerned about enoxia. Later, a nurse provided the plain-spoken translation: she had gone too long without oxygen. Four years would pass, however, before the family fully understood and accepted the consequences -- that this once "bubbly, vibrant, and independent" woman now existed in what in medical terminology is known as a "permanent vegetative state." They knew that Nancy would not want to be kept alive like this.

    But in May 1987, when the Cruzans requested removal of her feeding tube, hospital officials refused to comply without a court order. The family took the case to the Missouri Supreme Court, and then to the U.S. Supreme Court. It was only after an unrelated acquaintance of Nancy provided supporting testimony, says White, that a lower court judge allowed her sister to "die with dignity."
    Inside her hospital room, on December 26, 1990, Nancy Cruzan finally did die, but not without the world watching and commenting. Outside, Operation Rescue protesters ringed the building with signs reading "Murder or Mercy?" and "Feed Nancy."

    The landmark Cruzan case -- and that of Karen Quinlan a decade earlier -- placed the dramas of dying patients and their families on center stage. But as some of the cases below illustrate, dying is still "not what it should be in the United States. It's too painful, too isolated, too impoverishing, and too terrifying," says bioethicist Caplan. "All too often it takes place among strangers without good family or spiritual support, and most dying is done today in intensive-care settings far removed from familiar surroundings. We know all this, yet we seem unable to fix it."
    Theresa Blake's son, Anthony, was born in 1985 with hydrocephalus, an accumulation of fluid in the brain. During his short life he would be diagnosed with 14 different diseases, from apnea to cerebral palsy. At first she aggressively pursued treatment for her son, choosing to care for him at home -- even suctioning out his lungs herself -- rather than put him in an institution. Anthony couldn't walk, speak, or hear, but when he slept, she says, he looked just like an angel.
    By age seven, however, he was hospitalized with a feeding tube, ventilator, and tracheostomy tube. Blake had done some research on her own, and after realizing what doctors had not told her, that Anthony was in a vegetative state with no hope for recovery, decided it was time to shut off all artificial support. But a child protection agency secured a court order to block her. Even when that order was reversed, the hospital insisted on maintaining Anthony's feeding and tracheostomy tubes. One day, in desperation, Blake threw herself over her son and begged to be allowed to take him home to die. Instead, he lived in this "medical limbo," as she calls it, until age 10.
    Just three hours before he died, the hospital decided to stop feeding him. First they made Blake sign a form saying she wouldn't sue. Then they led her to his room, requesting that she leave in his tracheostomy tube. Blake holds up her accomplice from that day, a shaggy, orange-haired puppet named Alf, and explains how three minutes before Anthony died, she removed his tube and put it in the puppet's mouth, then held Anthony in her lap. As he died, angelic and finally unfettered, Blake says, "I told him this was the only dignity I could give him. I hoped it was enough."
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