CYNTHIANA, Ky. (ABP) — Lou Byrd knows she could be in the final months of her life and is at peace with that.
“There are worse things than death,” said Byrd, a member of Cynthiana (Ky.) Baptist Church.
The 73-year-old has both emphysema and chronic obstructive pulmonary disease. “There's no cure for it,” she said matter-of-factly. “I'm not going to hold back when [God] calls.”
“Holding back” to Byrd means relying on artificial respiration, nutrition or hydration to maintain her body's functions when she reaches her final hours. She has signed an advance directive stating her wishes. Byrd said she also plans to sign a separate document informing emergency medical personnel that she does not want CPR or other resuscitation treatment if her cardiac and respiratory functions stop.
But Byrd is in the minority, according to a national survey. The legal website FindLaw.com reports that only 36 percent of Americans have formalized plans for end-of-life care through an advance directive.
More than 30 years after the first living will legislation was introduced in the United States, Americans seem either confused about end-of-life decisions or, according to some observers, reluctant to formalize their wishes.
Meanwhile, doctors, judges, theologians and just about everyone else continue to debate which types of medical care prolong life and which ones prolong death. Theologians and hospice providers say these issues are particularly thorny for Christians, many of whom wonder if they are meant to decide this issue in the first place.
People “want to know, 'Have I crossed a line here?'” said John Rudd, chaplain supervisor for Hospice of the Bluegrass in Lexington, Ky., who has counseled hundreds of patients and families about end-of-life decisions. “A chaplain's job is to help patients and families find their way through those issues without playing God,” he said.
Margie Montgomery, executive director of Kentucky Right to Life, said many people believe they already have informed loved ones about their end-of-life care wishes through informal talks. “Most of us feel we have someone in the family who feels like we do,” she said. “But there are terrible arguments that can ensue in hospital corridors.”
Florida judges ruled recently on one of the most high-profile end-of-life disputes in recent years. The Florida Supreme Court ruled 7-0 against “Terri's Law,” a 2003 act that allowed Florida Gov. Jeb Bush to order a feeding tube be reinserted into a 40-year-old disabled woman.
Such matters were practically unheard of 40 years ago according, to George Webb, a retired anesthesiologist and medical director of the Hospice Institute in Louisville, Ky.
A 1962 medical school graduate, Webb marvels at the advances in medicine he has witnessed during his career. “Transplants were just being thought of,” he said. “Heart-assist devices and ventilators were in the early stages.”
Medical progress has blurred the lines between life and death, creating the need for the formalization of end-of-life wishes through an advance directive.
An advance directive is any written document that gives explicit instructions regarding health-care treatments during a serious or life-threatening illness or injury. A living will is the most common type of advance directive.
Louisville attorney Jay Turner helps people who want advice on estate planning. He said only about 20 percent of the plans he has facilitated have included advance directives.
“Everybody knows who they want to have their stuff,” Turner said. “But a lot of Christians are even loath to approach the subject of end-of-life issues.”
The hesitancy is more than just a reluctance to talk about death, according to Robert Parham, executive director of the Baptist Center for Ethics. “The Christian community has the strong tendency toward avoiding decisions out of fear of making an imperfect decision,” he said.
Parham called advanced directives an exercise in Christian stewardship and unselfishness. They spare family members from making agonizing choices for a loved one, he said. “As responsible moral agents, we need to be more accountable for our own decision-making.”
As a Baptist layman, Turner agrees. “I consider that trying to offer a solution before the problem presents itself to be taking care of the temple,” the lawyer said.
Most observers agree that end-of-life decisions should be made, but the choices themselves are less clear. Court rulings since the mid-1970s granting the discontinuation of artificial respiration, nutrition and hydration have contributed to a critical shift in perception, Montgomery said.
Judges, juries and family members once assumed most people would prefer to live, even in a chronically debilitated condition, Montgomery said. Now there is “a presumption of death,” she said, where friends, family and courts assume a person would rather die.
This shift led the National Right to Life Committee, which opposes right-to-die measures, to establish the “will to live” project to assist people in forming end-of-life plans that go beyond most living wills. The “will to live,” like any advance directive, is a binding, legal document.
“Decisions coming down from the courts indicate a need for people to have these protections in place,” Montgomery said, pointing to a recent ruling by the Kentucky Supreme Court as an example.
In August, the high court upheld a 1994 law that permits guardians or relatives to discontinue life support — including artificial nutrition and hydration — for an unconscious person who does not have an advance directive.
“It sets a dangerous precedent,” Montgomery said, noting that the decision would permit “removing food and water from a person not in the last stages of a terminal illness.”
Montgomery said the language in most living wills is too broad. “You can't paint it all with a wide brush as some documents indicate,” she said. “We should determine what is in the best interest of each individual patient.”
According to the National Right to Life Committee, the “will to live” records a patient's desire to receive treatment that would preserve life, even if that treatment might not cure or improve his condition.
Artificial nutrition and hydration would be considered basic treatment and not medical care under a “will to live.” The document can also outline special conditions for the discontinuation of certain medial care and treatment if a patient is suffering from a terminal illness or death is imminent.
For end-of-life care decisions, Parham said Christians should “use the best resources available. The biblical witness calls us to practice the gift of discernment.”
Byrd said she is “leaning heavily on the Lord” as she makes decisions that will affect not only her but her husband of 54 years, Richard.
“I know the Lord can heal me instantly if he wants to,” she said. “And if not, one way or the other, he's going to take care of me.”
-30-
— Photo available from ABP