In 2005, the Terri Schiavo drama riveted the nation with a cast of thousands: a feuding family, legions of lawyers and judges, dueling neurologists, irate clergymen and rowdy picketers. Politicians plotted and offered legislation, and President George W. Bush flew from Crawford, Texas, to Washington, D.C., in the middle of the night to sign emergency legislation blocking removal of a feeding tube from the stomach of a 41–year–old Florida woman in an irreversible coma.
“I can’t imagine a Terri Schiavo case happening in the state of Oregon,” says OSU Professor Courtney Campbell, a nationally known religious–studies scholar and bioethicist. “Somehow, we’re able to get to consensus on these difficult health–care issues without having them land in the courts and media headlines.”
Campbell credits Oregon’s pioneer spirit for fostering a “social laboratory” for reasoned decision–making on medical and ethical issues. The settlers who braved the wilds of the West were freethinking risk–takers who rejected the Eastern establishment’s rigid norms, he says. The “Oregon ethos” of today flows from that frontier heritage, spilling into unmapped territories of science, medicine and personal choice, a brave new world unimaginable when the wagon trains rattled over the Oregon Trail. Terri Schiavo became the public face of a technological revolution in medical research, along with such notables as Dolly the sheep and the “Snowflake babies.” The scientific strides behind these media stories — the life–support machines that maintained a brain–dead woman, animal cloning that produced a Scottish ewe and in–vitro embryos that led to a small subset of adopted children — are dazzling in their technical brilliance.
Equally breathtaking are the ethical dilemmas they raise. Today’s medical choices, confronted privately at hospital beds and collectively at ballot boxes, bump into the deepest mysteries of human existence. That’s where ethics experts like Campbell come in, to help lawmakers, doctors, hospital administrators, hospice workers and ministers align time–honored values with ultra–modern tools that just a few years ago were sci–fi fantasies. Bioethics, which emerged as a discipline with the advent of futuristic medicine in the 1970s, exists at the nexus of humanity’s oldest ideas and newest inventions, its profoundest hopes and deepest dreads. The stakes couldn’t be higher: life, death, suffering and the meanings we give them.
Cells and Selves
It is at this tangled crossroads, the intersection of science, practice and belief, where Campbell spends his intellectual life. “We can explain the circumstances of, say, embryo development or terminal illness medically and scientifically,” he says. “But deciding what those things mean in an individual’s life, or what they should mean for a culture and how we should respond to them in terms of medical practice, brings in deep–rooted values and deep–rooted worldviews.” Bioethics is, by definition, a multidisciplinary enterprise that causes strange bedfellows (philosophers and researchers, doctors and pastors, hospice workers and assisted–suicide advocates) to hunker down for dialogue and problem–solving.
“Oregonians value quality of life over sanctity of life. They also value prevention over high-tech interventions.” Courtney Campbell
This dialogue takes Campbell from the classroom (where his popular courses fill up fast) and the humble chaplaincy of a Corvallis hospital all the way to the corridors of power in Washington, D.C. From 1997 to 1998, he was a special consultant to President Clinton’s National Bioethics Advisory Commission and contributed two papers about religious values, one on human cloning and the other about research on human tissues.
Whether he’s sitting on a national commission, writing a journal article, advising a community–based healthcare organization or mediating campus controversies on emergency contraception and animal care in research labs, Campbell is definitely not an ivory–tower philosopher.
“In the field of medical ethics,” he says, “intellectual questions are being worked out at a very practical level, a level that often means the difference between life and death for people.”
It was Oregon’s innovative solutions to these difficult issues that lured Campbell west in the early 1990s. While finishing his Ph.D. in religious studies at the University of Virginia, he took a research position at the Hastings Center, the nation’s first biomedical ethics think tank. There, he encountered ER physician and Oregon legislator John Kitzhaber, then president of the state Senate, and learned of Oregon’s seedbed status on difficult health–care issues. Oregonians had, for instance, initiated the national conversation known as the Community Bioethics Health Decisions Movement, which convened “citizen parliaments” probing health–care values. They were about to launch the innovative Oregon Health Plan for the uninsured poor. And they were beginning to ponder the toughest end–of–life issues, a debate that culminated in the nation’s first (and only) physician–assisted suicide law, which allows dying patients to hasten their own death with prescription drugs. A series of blistering legal battles ended in 2006 when the U.S. Supreme Court upheld the Death With Dignity Act.
In November, Oregon voters marked the 10th anniversary of their hard–won right to speed the end of terminal illness. About 300 Oregonians, roughly 30 each year, have chosen to forego the wracking pain of late–stage disease (and, for many, the shame of losing bowel and bladder control) by swallowing a lethal draught of prescribed sedatives.
“Oregonians value quality of life over sanctity of life,” Campbell notes. “They also value prevention over high–tech interventions. And they care about equitable distribution of health–care resources.”
The 2008 presidential campaign has once again thrust health care into the center of public discourse. Oregon stands to play another bold role as Americans rethink rising costs and declining access. Kitzhaber, who spearheaded the Oregon Health Plan before serving as governor from 1994 to 2003, is leading the reform–oriented Archimedes Movement. Based on grassroots consensus around core principles, the movement aims to radically transform health care, first in Oregon and then across the nation. In the simplest terms, Kitzhaber envisions “a system that we can afford, that includes everyone and which produces health.”
Says Professor Campbell: “The most important question in medical ethics today is ensuring access to a basic level of health care for all citizens. So Kitzhaber’s efforts are as pioneering in the 21st century as they were in the 20th century.”
Unlike the Schiavo case, most of the wrenching quandaries doctors and families face are resolved quietly in hospital corridors or family counseling, Campbell notes. Often, these questions come before hospital ethics committees, which are charged with helping patients and physicians confront choices that are shrouded in the gray veils of conscience and faith and whose alternate outcomes may seem equally awful. “These decisions are messy,” Campbell says. “Really messy.”
In discussions and workshops with students and community members, Campbell lays out the kinds of reallife scenarios that challenge ethics committees every day:
- A Down syndrome baby needs corrective surgery on its esophagus to save its life, but the parents refuse the operation
- A 27–year–old former U.S. Air Force pilot and athlete who was severely burned in an explosion refuses treatment and asks to go home to die
- A very short 11–year–old boy and his mother want him enrolled in a study of HGH (genetically engineered human growth hormone) in hopes that he can reach normal height; the doctor doesn’t view short stature as a disease and is uncomfortable with the experimental treatment
- The parents of an accident victim in a persistent vegetative state want her feeding tube removed.
This last scenario raises, once again, the specter of the Terri Schiavo tragedy–turned–travesty. Here at the end of the Oregon Trail, the progeny of pioneers have avoided a Schiavo–like spectacle. In fact, in the 30 years since the “living will” (now called an “advance directive to physicians”) came to Oregon, not one end–of–life case has been litigated here, Campbell says. Meanwhile, researchers at Oregon Health & Sciences University are blazing trails in cloning primates and other animals, as well as advocating advances in stem cell research, more evidence of Oregon’s frontlines stances on controversial issues.
“In this state, we’ve largely decided that we trust physicians and patients and families to make those decisions without the interference of government or religious authorities,” he says. “We have a spirit of toleration, even when we disagree. We’re willing to live together peaceably without a great deal of animosity toward each other.
“That,” he concludes, “is an enormous cultural and social achievement.”