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HEART-RENDING CHOICES
TWO FAMILIES HAVE FACED HARD DECISIONS ABOUT THE FATE OF THEIR LOVED ONES, BUT THEY HAVE MADE THEM IN PRIVATE

Daniel Kissling was a major player before his accident, the fifth generation in a proud family line groomed to assume control of the Kissling Interests real estate empire.

Joey Gentile was an infant, a child born into the world without the ability to move, speak or breathe.

In both cases, their parents were told their sons had lost all higher brain function. Their children would never get better, never heal. They would never live the full and complete life their parents had once marked out for them in this world.

While Terri Schiavo's life and death have captured the nation's attention, many other families make hard decisions about the fate of their loved ones every day in private but equally painful ways.

Hope is always hard to kill. And family members of people in extreme conditions come to very different conclusions about when life should be supported -- and when it ought to be allowed to stop. Here are two stories of families who have struggled with enormous grief and come to differing answers.

The Kisslings' story

Tony Kissling and his son, Daniel, came up to Buffalo from New York City in 1998 to expand their holdings and turn around properties in the struggling city. Daniel took up permanent residence in Buffalo, eager for the challenge.

He'd always been a thrill seeker. While in his 20s, he flew his own plane, scuba dived in exotic locales, golfed, skied and snowboarded.

Then Daniel bought a motorcycle. "He promised me he'd never ride it," Tony said, "but he did. He didn't have it for more than two months." Late on Oct. 5, 2001, Daniel took his motorcycle over the windy Skyway and lost control. He slid head-first into a guard rail.

For 3 1/2 years, Daniel has remained in a persistent vegetative state supported by a feeding tube in Erie County Medical Center -- despite a living will and the wishes of his father. "He was a high-profile guy," Tony said of his son, now 31. "He took a lot of risks. He said, 'Look, if anything happens to me, I want to die.' "

But Daniel's mother, Tony's ex-wife, Barbara, doesn't believe her son's time is up. She fought her ex-husband in court for the right to support Daniel's life and even moved to Buffalo from Vermont to be closer to him. She sees something in her son that Tony stopped searching for long ago. Barbara Kissling did not return multiple calls to comment.

Many medical ethicists say the decision to pursue aggressive medical treatment should be weighed against the extent to which a patient will benefit -- whether there's a reasonable chance that a patient will improve.

It's not uncommon for family members to see more life in a patient than a doctor does. Schiavo's parents, Bob and Mary Schindler, for instance, believed their daughter was very aware of their presence despite numerous medical opinions to the contrary.

"I end up dealing with this all the time," said Dr. Stephen Wear, a physician and director of the University at Buffalo's Center for Clinical Ethics. "We certainly see families who see things going on that we don't see, and they're usually wrong, but not always."

The Gentiles' story

Marilyn Gentile, a single mother, has devoted her life to caring for her son, Joseph, since the day he was born 16 years ago.

Joseph was born with severe spina bifida, a birth defect where the backbone and spinal canal do not close before birth. With extensive brain damage, he has been on full life support and round-the-clock care his entire life.

In the Netherlands, it's not unusual for doctors to euthanize babies born with Joey's condition.

Though doctors have told Marilyn her son has no higher brain activity, Marilyn believes Joey can respond to simple questions with his eyes and facial expressions.

"It is hard to describe," she said. "But if you are around him, you realize he is communicating in his own way. He is telling me that he has a will to live."

Marilyn once battled a physician who suggested her caring for him at home was futile. She does it, though she's routinely conflicted about her choice to keep Joey alive. She believes her son has a quality of life, though she often asks herself what it is about Joey that makes his life so precious.

"Am I keeping Joey alive for my own selfish reasons?" she said. "I wonder about that."

In cases like Daniel's, Joey's and Terri Schiavo's, the tragedies of injury and illness are often magnified when the injured person is young. "It makes it easier when someone's had their life than when they've had it cut off early," Wear said.

Searching for hope

There was a time when both Tony and Barbara Kissling agreed about their son's treatment. In the months immediately following Daniel's accident, neither parent wanted to give up hope.

Five months after the accident, Daniel opened his eyes. Both parents rushed to his bedside, hoping their son would recognize them.

But Daniel's eyes were blank.

"I still thought that maybe somehow, something would happen," Tony recalled.

To be sure nothing more could be done for Daniel, Tony contacted top doctors in Montreal, New York City and Cleveland. "If doctors say they don't know what will happen, you err on the side of life," Tony said. "If there could be any meaningful life for him, any meaningful life for him whatsoever, I'd be the first one to embrace it."

Instead, he said, doctors spent hours telling him and his ex-wife that Daniel would never get better. But Daniel doesn't fight for breath. As a young, healthy and active man at the time of the accident, his body still breathes on its own, though medication is still often required, Tony said.

He said his former wife prays for a miracle for their son. She's held bedside vigils for him and found solace and support from her church.

Tony has done the opposite. He went to court in 2002 to try to get a judge's order to remove Dan's feeding tube.

"You can't starve someone in that condition," Tony said. "It's like starving a rock."

Many physicians agree that a feeding tube is medical treatment, just as a ventilator to aid breathing is. . They are both considered artificial means of life support.

Many religious leaders, however, don't believe a feeding tube is unnatural treatment or should be withheld for any reason.

"We don't consider food and water medical treatment," said Judith A. Gorman, director of pro-life activities for the Diocese of Buffalo. "That's something we consider to be a basic right to life."

Facing the end

Marilyn Gentile doesn't take a moral position on life-sustaining treatments. She provides them for her son because it feels right to her.

Joey still suffers frequently from infections. He lives with the constant threat that his fragile medical condition could rapidly decline.

"I've been preparing for that moment since the day he was born," his mother said. "I feel I will know when it's time to let go, when he doesn't want to live anymore. We've been close. But, to me, he still wants to live."

Tony Kissling believes the opposite of his son.

When he discovered that removing a feeding tube against his wife's wishes would require a lengthy court fight, however, he gave up the battle.

"I don't want anyone to see me as trying to kill Daniel," Tony said, "but it's what he wanted. It's not what I wanted or Barbara wanted. It was in his will. You could talk to 30 of his friends, and everyone would talk the way I'm talking. It was his wish."

It's been 18 months since Tony has seen Dan, even though he makes regular visits to Buffalo to check on his properties. It's too painful, he said.

"I'm never going to go back," he said. "As far as I'm concerned, Daniel died on Oct. 5, 2001."

e-mail: stan@buffnews.com
and hdavis@buffnews.com

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