Published: November 16, 2007 10:41 pm      

PROFILE: A brother’s suffering shows need for changes

On March 21, 2006, Patricia Lingenfelter’s brother Raymond died. He was 54. At the time of his death, Raymond, who was 6-foot tall, weighed 70 pounds. It was a painful experience for Lingenfelter and her family, who watched their severely handicapped loved one suffer immeasurable pain and anguish, kept alive against his family’s wishes even though there was no hope for his recovery.

Stricken with numerous debilitating health problems, including multiple sclerosis and epilepsy, Raymond had been in a group home since age 11.

“He was totally dependent on people for everything,” Lingenfelter, said. In 2001, doctors inserted a feeding tube into his abdomen. Four years later he was transferred to a local hospital following complications with the tube. Doctors tried three other feeding tubes, but, with each one, there were complications. Raymond was suffering, and there was no hope.

Eventually, he was transferred to a nursing home. Caretakers there saw how poorly he was doing and told family members they could either keep the IVs in and allow him to continue suffering, or they could remove the IVs and let him die peacefully. Lingenfelter and other family members discussed what to do and decided it was best to end Raymond’s suffering.

Raymond’s parents told nursing home staff their decision, but were later informed that because they were not Raymond’s appointed health care proxy — he didn’t have one — they could not make that determination.

“They had to go to court to become the guardian of their own child,” Lingenfelter said. Raymond passed away before the court could reach a decision. His death touched everyone in the nursing home.

“Everybody loved him,” said Lingenfelter, 50. “He brought out the good in everyone. He just loved when anyone came into the room, especially blondes.”

Since her brother’s death, Patricia Lingenfelter, who lives in the City of Tonawanda, has made it her mission to both share Raymond’s story and change New York’s life-sustaining treatment laws.

Recently, she founded the Web site www.arayofhope.info and self-published a memoir, “For Raymond.”

“I was so upset with what happened to him,” she said. “I promised him that I would tell his story.” Lingenfelter hopes that by sharing her brother’s story it will spurn others to call on their elected officials to change New York state’s laws so that loved ones can make such critical decisions.

“I’d like to think that that was the purpose for him suffering the way he did,” she said. Lingenfelter also has taken to passing out health care proxy forms for people to complete should anything bad happen.

The law Lingenfelter is pushing for is the Family Health Care Decisions Act, a link to which is on her Web site. The state Assembly approved the law last year, but the Senate did not.

So far this year, there has been no movement on it, she said. Lingenfelter said she’s “appalled” that such a law has not been adopted.

“They’ve been haggling for years over what to do when there’s no health care proxy.”

She says fear and misunderstanding are the reasons people are reluctant to consider such legislation. She said people think that by passing this law it will lead to euthanasia, which is incorrect.

Lingenfelter also was concerned that it might cause controversy among Catholics. Her priest, however, told her that in a case like Raymond’s, the Catholic church would agree with the family’s decision. The company through which Lingenfelter published the book is a Catholic book publisher. Lingenfelter admits that she is on a mission.

“It’s just so wrong that I can’t let it go until something’s done about it,” she said. “I hope his story touches people the way his smile did when he was alive.”

“For Raymond” is available for purchase on Lingenfelter’s Web site and by contacting her at anotherpage@roadrunner.com or by calling 418-2618.

Contact reporter David J. Hill at 693-1000, ext. 115.