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Florida case reminiscent of agonizing '98 decision
Saturday, November 01, 2003

A nursing home patient is unaware of her surroundings, cannot communicate and is unable to take care of herself. Her guardian decides she shouldn't be fed through a tube inserted in her stomach, knowing that the patient will soon starve to death. Another family member is upset by the decision and goes to court to stop it.

It's not the case of Terri Schiavo, the Florida woman who has been in what doctors refer to as a persistent vegetative state for 13 years and whose husband and parents have been arguing about what is best for her during much of that time.

Instead, it's what happened to the family of Dorothy Jacobus, who lived in a McKean County nursing home with Alzheimer's disease that progressed to the point that three doctors diagnosed her to be in a persistent vegetative state. She could not think, communicate or remember although she could breathe and her heart kept beating.

While keeping tabs on the Schiavo case, "I certainly have been thinking about Dottie," said Greta Jacobus, 73, of Kane, who served as Dorothy's guardian and ended up in a court battle with the patient's daughter over whether feeding tubes should be used to sustain life.

Dorothy Jacobus entered a nursing home in 1991. Then, she could chat a little about the weather, but clearly had difficulties. On one occasion, she repeatedly asked about the whereabouts of her husband, Phillip. Greta Jacobus, Phillip's sister-in-law, told her, again and again, that he was at a meeting.

Seven years later, Phillip's death made Greta Jacobus the sole guardian of Dorothy. By then, Dorothy had grown much worse.

"She might make sounds, unintelligible sounds, for no reason," her sister-in-law said. "She might move or open her eyes while you were there. But she wasn't able to communicate and hadn't been able to for some time."

Then the doctors said that Dorothy Jacobus was no longer able to eat. They could put in a feeding tube and an intravenous line for fluids, one or the other, or neither. If they did nothing, she would die.

Greta Jacobus talked to her parish priest, to the chaplain at the nursing home, to her physician daughters, one of whom specialized in geriatrics, and to one of Dorothy Jacobus' sons. She recalled an Alzheimer's expert saying at a lecture, 'We're not starving them to death. It's part of the course of the illness,' and her brother-in-law telling her that he wouldn't want his wife to live on a feeding tube.

"Ultimately, I made the decision not to have a feeding tube inserted, not to give her IVs and to just let death run its course," she said.

Dorothy Jacobus' daughter, Katharyne Jacobus, whose current whereabouts are not known, took her family to court, arguing that her mother was denied the basic right to humane medical treatment.

At the hearing, Phillip Jacobus Jr. told the court that years earlier, he and his mother had visited a hospital where she had seen severely debilitated patients. She said to him, "I don't want to live like that.''

The court ruled against Katharyne Jacobus, and her mother died in March 1998, 11 days after feedings were stopped.

Since then, Greta Jacobus has made a similar decision for another relative -- her late husband's elderly aunt -- who also had Alzheimer's disease and also steadily deteriorated.

Once more, Jacobus consulted family and friends.

"She had progressed to the point where she didn't know anybody, she wasn't able to communicate," Jacobus said of her 91-year-old relative. "She sat slumped in a wheelchair. Her life was a terrible burden to her."

Jacobus decided to forgo medical treatment and her husband's aunt died soon after. This time, there were no family conflicts.

In the earlier situation, "I think the major problem, if you lump it all down, was that there was no communication between the various members of the family," Jacobus said.

What happened in that situation is unusual, said legal experts. The Schiavo case, especially the intervention of the Florida Legislature, is unprecedented.

"This level of family feuding is exceedingly rare," said Alan Meisel, professor of law and bioethics at the University of Pittsburgh. "Usually what happens is the family and the health care professionals come to the conclusion, often not simultaneously but they eventually agree, that nothing more can be done."

Treatment is typically stopped without any judicial review. He estimated that fewer than 1 percent of these cases get to the courts.

According to Dr. Ronald Cranford, a neurologist and professor at the Center for Bioethics at the University of Minnesota who once consulted for Michael Schiavo, there are about 25,000 to 35,000 patients in persistent vegetative states at a given time and decisions about feeding tubes and other interventions are common.

The Schiavo case, particularly the animosity between the relatives, stands out.

"You'll never see another one like this," Cranford said. "It's an unbelievable circus."

He said families often have a difficult time accepting that their loved one will not recover from a persistent vegetative state. For people whose brains have been severely damaged by a lack of oxygen, which is what happened to Terri Schiavo, the prognosis is terrible.

"There has never been one single report of a survivor who has recovered and done well after one year," Cranford said. "And [Schiavo], without any doubt, was irreversibly brain-damaged at one to three months" after her massive heart attack.

Over time, the brain atrophies. Basic functions such as breathing and heart pumping are left.

If fed, "she could live another 3 to 5 or 10 years, with no change in her condition. None," Cranford emphasized. Even with excellent medical attention, patients like Schiavo typically die within 20 years because of complications such as infection.

He added that while it can be agonizing for family members to watch their loved one die without food or water, the patient does not suffer during the process.

"Have an advanced directive" that informs caregivers of your wishes, Meisel recommended. "This case illustrates that you are never too young to need one."

Jacobus realized recently as she watched a television program about the Schiavo family that she didn't have an advanced directive or living will.

"I've got to get over to the hospital and get one of those forms," she said. "I certainly would not want to be kept alive if I were in the position Dottie Jacobus was in. I don't want someone to give me [drugs] to hasten death, but I don't want them to prolong it when ... it's a terminal illness."

She thinks she made the right decision for her sister-in-law. But not everyone does. During the holidays, she gets cards, unsigned and with false return addresses, that call her a murderer.

The "Living Will and Healthcare Power of Attorney" form can be downloaded without cost from the Allegheny County Medical Society Web site at www.acms.org. Or, send a check for $2.50 per form to the medical society at 713 Ridge Ave., Pittsburgh 15212. Call 412-321-5030 for more information.

First published on November 1, 2003 at 12:00 am
Anita Srikameswaran can be reached at anitas@post-gazette.com or 412-263-3858.
Correction/Clarification: (Published Nov. 7, 2003) In a story in Saturday?s editions about a 1998 right-to-die case in McKean County, Greta Jacobus, who became the caretaker for her sister Dorothy Jacobus, was incorrectly identified as Phillip Jacobus? sister. She was his sister-in-law.
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