http://www.sptimes.com/2003/12/14/photos/a-feedtube1.jpg
Dorothy Turrentine, 90, has been a resident of Palm Garden in Largo since her daughter, Norma Ramsey, at right, began working there as a nurse five years ago. Before that, Turrentine lived with Ramsey for eight years.
http://www.sptimes.com/2003/12/14/photos/a-feedtube2.jpg
Nurse Norma Ramsey speaks with Herbert and Vera Klein in the halls of Palm Garden in Largo. Vera Klein has been visiting her husband, Herbert, at the nursing home nearly every day for 12 years. "I wouldn't give up the time I spend with him for anything," said Vera.
Illustration: How a feeding tube works
Down the hallway in the Largo nursing home where 40-year-old Terri Schiavo once lived, 90-year-old Dorothy Turrentine is slowly dying.
As a young Kentucky woman, she danced on roller skates to catch the eye of her future husband. She raised two kids and ran a small farm. Now a bum heart has brought her to the end. She has stopped eating, except for occasional sips of nutrition drinks or milk.
Her condition presents a thorny challenge for the Florida Legislature, which passed a law in October enabling Gov. Jeb Bush to order Schiavo's feeding tube reconnected six days after it was removed.
Because of the Schiavo case, a move is afoot in Tallahassee to alter Florida's right-to-die laws. One bill would lead to more tube feeding for people without living wills. Another would limit decisions by family members, such as Schiavo's husband, who might have a financial stake in their loved ones' fate.
Some doctors and nursing home administrators say they are worried such changes could do more harm than good. For every Terri Schiavo, a young person who might survive decades on a feeding tube, there are thousands of Dorothy Turrentines, chronically ill elders who don't want to eat.
Tightening tube feeding laws "would have a chilling effect on current practice," said Dr. Robert Walker, a University of South Florida professor who specializes in medical ethics.
"In the dying process, people's bodies normally shut down and they lose appetite. If you put in a feeding tube, we might be able to sustain life a little longer in some cases, but ultimately they are going to succumb to the disease process."
Several lawmakers said they share these worries and are proceeding cautiously.
"The one thing we don't want to do," said Sen. Dennis Jones, R-Seminole, "is take the million people who have existing living wills and have them concerned that their instrument is not valid, because it certainly is."
However, the only bill filed so far, the "Starvation and Dehydration of Persons with Disabilities Prevention Act," illustrates the challenge.
Now, state law lets people reject "life-prolonging procedures" by signing living wills or advance directives. These directives kick in when the person becomes unable to communicate. People also can designate a "health care surrogate" to make decisions for them. Even without written instructions, family members or friends can decide what would be best.
The proposed bill would narrow these options. It would prohibit courts, doctors, health care surrogates and families from withholding tube feeding except for a few circumstances:
The patient had rejected tube feeding with specific written instructions. A living will that only rejected "life-prolonging procedures" would not kick in unless it specifically mentioned tube feeding.
The patient had previously given clear and informed oral consent to withholding the feeding tube.
The tube would not sustain the patient's life anyway.
Depending on how doctors and nursing homes interpret these conditions, that could mean more feeding tubes for people like Dorothy Turrentine.
Congestive heart failure has clouded her mind. Her food intake dropped dramatically a month ago, and she has lost 28 pounds. She left decisionmaking to her health care surrogate and daughter, Norma Ramsey. But she made no living will, much less one with specific instructions about tube feeding.
Ramsey said she is certain what her mother would want.
"She and I discussed a lot of things," said Ramsey, an assistant director of nursing at Palm Gardens of Largo, where her mother has lived for five years. "She said she didn't want any heroics at all. She said, "I don't want to die more than once. Don't bring me back."'
With 38 years in nursing, Ramsey has seen hundreds of people die, including many who stopped eating. "It's a quiet death. Very quiet. They just slip away."
The bill's sponsor, Sen. Stephen Wise of Jacksonville, said he was motivated by disturbing videos of Schiavo, the Pinellas woman whose plight has sparked years of court battles. Some doctors and a judge say she lives in a persistent vegetative state. She moves her eyes, swallows saliva and makes sounds. Her husband wants to remove her feeding tube and says his wife wouldn't have wanted to live this way. Her parents want to keep their daughter alive.
"If what they did to Terri Schiavo was done to a dog, they would be put in jail," said Wise, a Republican. "If they starved a dog to death, it would be cruelty to animals."
Last year, Wise watched his 83-year-old father die after a breathing machine was removed to comply with his father's living will.
"He had no brain waves. His heart was beating artificially," Wise said. "With the issue of being in a vegetative state, I think of my dad. When I conjure up Terri Schiavo, she was not even close."
What about chronically ill old people like Turrentine, who are conscious but won't eat?
"I don't know. I hadn't even thought about that," Wise said. "That's the difficulty of something sensitive like this. You start out thinking something is a pony but it turns out to be a Clydesdale."
Wise said his bill was drafted by Right-to-Life, an advocacy group that views food and water as basic sustenance no matter how it is delivered. Florida Right-to-Life president Robin Hoffman said a companion bill would be filed in the House.
The House bill is expected to be backed by House Speaker Johnnie Byrd, R-Plant City. Byrd could not be reached for comment.
Senate President Jim King said he expects some right-to-die changes to pass the House during the next legislative session, which starts in March. But he vowed to keep such bills from reaching the Senate floor. Even ostensibly good changes can be amended in destructive ways, the Jacksonville Republican said.
When his parents died of cancer, King said, "I witnessed first-hand a lot of things that are worse than dying - some of the invasive treatments being done."
King wrote many provisions in current law that give patients and families the right to withhold procedures. That legislation "is part and parcel of my legislative legacy."
One bothersome aspect of the Schiavo case for some legislators was that her husband stood to inherit money from a medical malpractice settlement if she died early on. Court records indicate most of that money has since been spent on lawyers. But some legislators want more protection against conflicts of interest.
Reps. Frank Attkisson, R-Kissimmee, and John Stargel, R-Lakeland, were early supporters of legislative action in the Schiavo case. They now say judges should appoint guardians ad litem in some cases to make sure family members' motives are pure.
When patients can't speak for themselves and haven't left written instructions, current law allows family "proxies" to decide. A spouse gets first crack at being the proxy. Absent a spouse, it falls to adult children, then parents and on down a line of succession that even includes close friends. Proxies now make end-of-life decisions for 20 to 25 percent of nursing home patients, experts estimated.
Any family member who thinks a proxy has a conflict of interest or is acting improperly can appeal to a judge. Such appeals are rare, because doctors and nursing homes have become skilled at helping families work through guilt and hash out feelings. The Tampa Bay area's two hospice organizations, for example, have treated more than 100,000 clients and have never seen a family dispute boil over into the courts.
"A lot of times there are multiple family members, and each one has an opinion," said Dr. Fadi Saba, medical director of Bon Secours Maria Manor, a Catholic nursing home in St. Petersburg. "Typically, we get the entire family in a room and let everyone say their opinion. Ultimately they come up with a decision on doing what's best for dad or mom, but it takes quite a bit of maneuvering."
The Legislature should "stop meddling with a system that has worked nicely all along," Saba said. "In eight years, we haven't had any problems."
Schiavo was the exception.
Judges already have the option of appointing a guardian to sort out family disputes. Attkisson and Stargel say guardians should be mandatory where there's a conflict of interest.
"We need to set up a review process to make sure when families make decisions, that it's unbiased and the closest loved one is making it," Attkisson said.
Terri Schiavo's husband, Michael, "received a lump sum of cash," Attkisson said. "Would he have been incentivized if her life ended sooner? The fact that he is engaged to somebody, and by now has a child, does that create an emotional conflict?
"I'd like to consider that a guardian ad litem be present to review it. Does this person have conflicts compared to the rest of the family?"
Such suggestions make some doctors and health care providers nervous.
Right-to-die laws and court decisions have evolved over years. The Legislature made changes in 1999 and again in 2001, after a task force studied the issues and took public testimony. Until now, those changes tended to broaden legal protection for family members, facilities and doctors who withhold procedures.
The guardian idea and the Wise bill would be steps backward, said Dr. Howard Tuch, medical director for Hospice of Southwest Florida. They would "create a level of fear and anxiety in an already charged environment."
The Wise bill says an incompetent patient "shall be presumed to have directed his or her health care providers to supply him or her with the nutrition and hydration necessary to sustain life."
Families, surrogates and courts could override that presumption if the patient wouldn't benefit from tube feeding. But the problem lies in the gray areas of diagnosis, when reasonable doctors might disagree whether the tube feeding would extend the patient's life.
Tuch said he wouldn't change his practice, because he believes chronically ill people who have stopped eating never benefit from tubes. Their bodies are just shutting down, he says.
Other doctors might not take that risk, fearing lawsuits and repercussions, he said. A legal presumption in favor of tube feeding might encourage a disgruntled family member to sue for malpractice. Family members who preferred the tube might insist on a time-consuming guardian, contending that the patient's life insurance or $35 in a Medicaid account creates a financial conflict with the proxy.
Such fears are exacerbated because most nursing home patients acquire their doctors at admission, Tuch said. There is no long-standing relationship with the patient or family.
"The default position is going to be the easier one to take." Tuch said. "If there's any question, I'm going to insist that the tubes be put in. The intimidation is very real."
