In early 2005, the story of Terri Schiavo dominated the news. The Florida woman had been in a vegetative state for 15 years. Her husband had petitioned, again, to remove her feeding tube, thus ending her life. Her parents wanted to keep the feeding tube in place. Lines were drawn, and many Christians mobilized in protest to keep Schiavo alive. George Greer, the judge in the case who ruled to remove the feeding tube and denied requests to put it back in, was asked by his pastor to leave the church. Schiavo died on March 31, 2005.
In many ways, the Schiavo case awakened people to end-of-life issues as rarely seen before, at least on such a grand media scale. In the past decade, more discussions and knowledge have shaped debates and informed people on such topics. Earlier this year, Brittany Maynard appeared on the cover of Time magazine for her choice to take a lethal dose of drugs. Suffering from terminal brain cancer, the 29-year-old used her doctor’s prescription last November to end her life.
It could have served as another skirmish in the culture war, but Maynard’s last days passed without much protest. Instead, a letter written by a Christian blogger—posted on author Ann Voskamp’s website—quickly went viral. Kara Tippetts, a terminally ill cancer patient who died shortly after Maynard, argued for and publically lived out on her blog, Mundane Faithfulness, a traditional Christian approach to death. “He died and he overcame death three days later, and in that overcoming of death he overcame the death you and I are facing in our cancer,” Tippetts wrote. “He longs to know you, to shepherd you in your dying, and to give you life and give you life abundant—eternal life.”
Tippetts’s tack, to leverage social media with a gentle yet firm message concerning life, could be a newer, more effective approach to a culture moving further away from traditional beliefs. Christians still respond to end-of-life decisions with spiritual insight and emotion. But they are also learning better how to handle certain battles.
Changing the End-of-Life Landscape
Public opinion on end-of-life issues remains evenly divided and unchanged over the last decade according to a 2013 Pew Research survey. But the US legal and cultural landscape has shifted rapidly, moving further away from Christian positions. For example, physician-assisted suicide has been legalized in Washington, Montana, and Vermont. Meanwhile, the US Supreme Court ruled that federal drug laws could not be used to stop Oregon doctors from prescribing lethal doses to terminally ill patients like Maynard. Other states are considering introducing similar laws.
“This thing is exploding,” says David Stevens, chief executive officer of the Christian Medical and Dental Association (CMDA). When Stevens is asked to speak at public events, representatives from Compassion and Choices, a death with dignity group, are often there arguing for assisted suicide. “After Terri, they have money flowing into their coffers,” Stevens says. In 2014, Compassion and Choices raised $19.3 million compared to $5.6 million in 2006. (CMDA’s revenue in 2013 was $13.7 million.) Stevens sees physician-assisted suicide as a hot issue in Maryland, New Jersey, and other states. And in Texas, he says, more hospitals are defining the use of life-prolonging technology as futile—as allowed for in a 1999 law—and withdrawing life-saving treatment. If nothing more can be done to cure a patient and only a feeding tube or ventilator will sustain life, a hospital can remove the life support after a certain amount of time or the family has to move the patient to a different facility.
When debate over the Affordable Care Act (ACA) was raging, many conservatives were most angered by the clause that would reimburse doctors for having conversations about the end-of-life values of their patients. At a time when 70 percent of Americans say they wish to die at home, 70 percent die in a hospital or other institution. These kinds of end-of-life conversations could be valuable. “I believe Sarah Palin initially called these ‘death panels’ which was a misnomer,” says Stevens. “Unfortunately, when the ACA passed, it had no requirement that insurance companies reimburse for end-of-life discussions.”
Skepticism about the provision made sense, says Trinity Evangelical Divinity School bioethics professor John Kilner, given “the legal processes that prevented Terri Schiavo’s parents and others from continuing life-sustaining technologies for Terri.” However, the debate over death panels and end-of-life discussions became politically charged and more contentious than irenic, leaving behind an opportunity to provide Americans the kinds of death at home that they want.
Cultural defeats like these have had evangelicals looking for better approaches, according to University of Pennsylvania law school professor David Skeel. “I think the backlash as a result of the Schiavo case [was] chastening,” he says.
Despite maintaining opposition to assisted suicide, other end-of-life issues are no longer so black and white for some evangelicals. With more information on medical treatment options and vegetative states, people have paused to consider the choices.
The Schiavo case might be divided into ethical, medical, and legal spheres. In the first two, there is a more nuanced understanding of such cases.
According to Stevens and other bioethicists and doctors, there is a greater understanding that Christians may refuse burdensome medical treatment, including a feeding tube, even if that hastens death. What matters is motivation. Is the purpose the removal of burdensome treatment or is it to cause death? Removing a feeding tube to make a patient more comfortable while an underlying disease causes death in the natural course of the illness is appropriate, says Union University biomedical ethicist C. Ben Mitchell. “The worry is [actively] starving a patient.”
Schiavo technically died from dehydration after her feeding tube was removed. Her husband said Schiavo would not have wanted to be in this persistent vegetative state and would have preferred death if she was able to make the choice. Some maintain that Schiavo’s husband didn’t represent her real wishes accurately and that he wanted to be relieved from this responsibility. Those who believe he honored her requests found that the removal of the feeding tube led to the course that started 15 years earlier: death.
Christian doctors do not believe they must always try to cure patients even if they must always care for them. Stevens says, “Good, biblical physicians will disagree on withdrawing food and water” when that is medically provided.
As a result, more Christians are actively limiting medical care, according to gerontologist John Dunlop, who has cared for elderly patients in his private practice for decades. After Schiavo’s death, “I find a greater openness to and recognition of the need to discuss end-of-life care and advance directives with my patients,” says Dunlop, author of Finishing Well to the Glory of God. Coinciding with a national trend toward a greater use of hospice services, he says, “In my practice, 100 percent were in the direction of setting limits to end-of-life care. While life made in God’s image has intrinsic value and dignity independent of our level of cognitive function, it need not be prolonged by artificial means.”
At the same time, the understanding of vegetative states has become medically more complicated. Before the Terri Schiavo case, says bioethicist Kilner, “many people thought in terms of ‘vegetative state’ and didn’t have more nuanced categories such as ‘minimally conscious state.’ Now that the subcategories have been better developed, there is less confidence.”
Brain scans of “vegetative” patients have shown that as many as 20 percent (3 of 15 in one study) have brain functions that suggest a level of awareness equal to a fully conscious person. There have been other cases, like that of Martin Pistorius who “woke up” after 12 years in a vegetative state. For roughly 10 of those years, Pistorius was alert and aware of what was happening around him.
While evangelicals are more willing to forego medical care and medicine has a better understanding of what it doesn’t know about “vegetative states,” politically and legally evangelicals have only barely shifted, according to the 2013 Pew Research survey.
How to Best Love the Vulnerable
Ken Conner was involved as a legal adviser on the Terri Schiavo case. Following a health crisis, he was himself put on a feeding tube. He still feels that Schiavo’s case was wrongly handled, that her wishes were misrepresented by her husband. Conner sees the anniversary of her death as an important time to remember the plight of the defenseless. “Notwithstanding her frailty and vulnerability,” Conner says, “Terri Schiavo remained a member of the human family. She should have been accorded protection and the respect of the law. The law failed her.”
Law professor Skeel is hopeful of a new day. The cultural defeats seem to have shifted, if only slightly, evangelical tactics on hot-button issues. “Evangelicals currently are more realistic, which is likely to prove more effective,” says Skeel. They are no longer showing up “to engage culture with a lawyer and a baseball bat.”
Rob Moll is a CT editor at large and author of What Your Body Knows About God and The Art of Dying.