By Elaine Jarvik
Deseret Morning News
March 31, 2006
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A year ago, Terry Schiavo was dying in nearly every living room in America, her face a daily reminder that technology can keep us alive but can't solve our ethical dilemmas. A year later, Schiavo's husband and parents are back on TV pushing books with opposing views of her death. All of which makes this week's "Rethinking Death" conference at the University of Utah particularly relevant.
While death is still an ultimate certainty (something at one level we can't "rethink"), its particulars — when exactly it happens, when exactly it should happen — have grown increasingly fuzzy. Schiavo died last March 31 after a legal battle that eventually drew in the U.S. Congress, the president and the Vatican. But daily in America, said speakers at this week's conference, families and doctors face bioethical questions just as perplexing.
"Society likes to think there's a bright line between life and death," said Dr. Stuart Youngner, a physician and chairman of the Department of Bioethics at Case Western Reserve University. "My argument is that this line is socially constructed." It's clear that a little girl swinging in her back yard on a sunny day is definitely alive, and that Napoleon is definitely dead, he pointed out. But where exactly do people who are "brain dead" fit in?
"All vital functions do not cease simultaneously," Youngner explained. We can substitute and support various body systems, so it's often "not the 'loss of all life' that we insist on," he says. "Life may persist in cells and tissues and organs." Even with the traditional measure of death — the heart stops beating, breathing ceases — the exact moment of death is murky, he says.
"Why do we care about the moment of death?" Youngner asks, and then lists the three main reasons: "organ transplantation, organ transplantation, organ transplantation."
On the one hand there are now some 90,000 people on waiting lists for organs, organs that must still be "viable" in order to be transplantable. On the other hand, we don't want to take organs from a person who is still living. So we have constructed the "brain death" definition. Or, as Youngner says, "we gerrymandered the boundary" of what death is to include "the almost dead, the good as dead, the dead enough, the soon to be dead."
In the late 1960s, with the increased use of ventilators, "brain death" became the standard for organ donation. This was defined as "whole brain death": both loss of cognition and consciousness, as ruled by the "higher brain" functions of the cortex, and loss of the integrative capacity ruled by the brain stem, which controls functions such as breathing.
The problem with "brain death" as a definition of death, Youngner says, is that while several decades ago patients with brain-stem damage usually died within a few days, now they can be aggressively treated and kept alive for long periods of time. "These patients stabilize; the spinal cord takes over much of the function." The patients can't breathe on their own and are unconscious, but if families refuse to withdraw life support these patients can be taken home and kept alive for months or years. And patients with only "higher brain" damage, who are not on ventilators but are on feeding tubes, can live for decades.
"The brain-death criteria and the first literature about PVS (persistent vegetative state, which was Schiavo's condition) was an attempt to draw a bright line across a murky biological issue, to solve with biological criteria that larger and complex moral problem," said Dr. Laurie Zoloth, professor of medical ethics and humanities at Northwestern University's Feinberg School of Medicine. "It is no surprise that the line will keep shifting." The definition of brain death also differs somewhat from state to state, said Leslie Francis, chairwoman of the department of philosophy at the U. In New Jersey and New York, for example, where there are significant numbers of Orthodox Jews, families can stipulate that the only criteria for death is cessation of cardiopulmonary function. Should such "conscientious objection" be limited to organized religions? Should there be a federal definition of brain death? Who gets to determine whether a patient is really dead? What about the case of 6-year-old Jesse Koochin, whose parents refused to believe doctors at Primary Children's Medical Center who said the little boy was brain dead and had to be taken off a ventilator? These were among the questions raised at this week's conference.
In recent years, a new definition of death has emerged, as a response to the increasing shortage of donor organs. Variously known as donor after cardiac death (DCD), non-heart-beating donor (NHBD) and donor without heart beat(DWHB), these are patients who don't meet the "brain-death" criteria. According to Dr. Jay A. Jacobson, chief of the Division of Medical Ethics at LDS Hospital and the University of Utah School of Medicine, 6 percent of all hospital deaths in America would qualify.
When life-support is withdrawn from one of these patients and his or her heart stops beating, doctors wait several minutes to make sure the heart will not begin beating again on its own (two minutes is the generally accepted amount of time, but this too is a "social construct," Youngner says). The person is then declared dead, is then reconnected to the ventilator, and his or her organs are harvested. In between the time the person is disconnected from life support and his organs are removed, he will typically be given anti-coagulants to prevent blood clots in the organs.
To qualify to be a non-heart-beating donor, there must be "a precise prediction of the timing of, and short interval to, death," explained Dr. Armand Antommaria, chairman of the bioethics committee at Primary Children's Medical Center. The patient might have higher brain damage, with no promise that he will regain consciousness, or the patient might have a terminal illness and be on life-support In these cases, the patient might choose to have that support withdrawn. Such scenarios raise questions for nurses, doctors and hospital social workers, who must take care to separate the life-support withdrawal discussions with families and patients, from the discussions about organ donation.
Some critics of CDC argue that the protocols give doctors an incentive to shorten or lessen the care given to patients in the hopes of retrieving much-needed organs.
"It's great they're having these ethical discussions," says Ben Dieterle of Intermountain Donor Services, "because as we all know, life and death is not a black-and-white issue." Dieterle says that in the intermountain region, DCD has been used for the past 18 months, providing four new organ donors to date. "We're trying to be as careful and methodical as possible," he says. In every case so far, he says, the patients had "minimal brain function and the rest of the body was slowly following."
E-mail: jarvik@desnews.com
Copyright © 2006 Deseret News Publishing Company.
This article posted April 16, 2006.