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Portland family's ordeal no less painful -- or divisive


Thursday, March 24, 2005 DON COLBURN

When Tim Lawrence sees pictures of Terri Schiavo and her family on the news, it takes him aback -- and back.

Back to a Saturday night in June 2003, when his wife, Gail, lay bedridden in a Gresham nursing home. After fighting multiple sclerosis for 16 years, she could no longer walk, swallow, see or speak.

A white plastic tube through a hole in her side kept her alive, carrying a blenderized high-nutrient mix directly to her stomach.

By then, her only way of communicating was by sounds and eye blinks in response to yes-or-no questions. One blink meant "yes."

"I'd ask her questions, and she'd answer with her eyes," said Lawrence, 55, a former TriMet bus driver who lives in Northeast Portland. He also learned to interpret her groans and cries.

But that Saturday night, she let out "a sound I wasn't used to" -- something, he recalled, between a wail and a whine.

He asked a flurry of yes-no questions: Was it pain? Was she too hot? Too cold? No, no, no.

She kept up her distressed cries.

"I finally asked her: 'Are you just tired of this, honey? Of living like this?' And she blinked her eyes: yes."

He got more specific, asking if she wanted the feeding tube removed, and she responded yes. Did she realize that she would die -- "pass away" is how he put it -- without the tube?

Blink.

Tim Lawrence told the head nurse what had happened. The nurse questioned Gail Lawrence repeatedly, to make sure Tim had not misunderstood.

The following Monday, the feeding tube came out. Gail Lawrence died in two weeks, eight days before her 46th birthday.

Throughout his wife's ordeal, Lawrence says, he felt caught in the middle, with his own mixed feelings. He was trying to honor his wife's wishes yet knew that meant losing her in a matter of days.

"All I know is that when she got her way, she had the most peaceful look on her face," he recalled.

But he also knew that Gail's parents, in Michigan, would be adamantly opposed. Lawrence called them after the tube was removed, but before she died.

"They were very upset," he said. "I don't know that they've accepted it yet."

Lawrence finds himself feeling empathy -- and at times, outrage -- for both sides in the heavily publicized case of Schiavo, the 41-year-old Florida woman who has existed in a severely brain-damaged state for 15 years.

"I know how he's feeling," Lawrence said of Michael Schiavo, who has battled his wife's parents over removing her feeding tube.

But Lawrence also knows, from personal experience, how complicated such cases can get, how hard it sometimes is for families to agree, even when everyone involved claims to put the patient first.

Gail Lawrence's father, Gaston Staten, speaking by phone from Detroit, said his daughter's death is still painful for him and his wife.

"It still hurts," he said. "We weren't satisfied how things went. There wasn't total agreement."

"Gail couldn't talk," he said, adding that he remains skeptical that she really wanted to have her feeding tube removed. "We're still trying to get over that."

Health slowly deteriorates

Tim and Gail Lawrence married in 1986. Months later, she developed a limp, one foot dragging. Doctors at Oregon Health & Science University diagnosed multiple sclerosis, a progressively debilitating disease.

Her condition steadily weakened over the next decade. She moved from cane to walker, walker to wheelchair, wheelchair to bedridden.

As long as he could, Tim Lawrence cared for his wife at home. "I became an expert in putting on makeup and doing her hair and catheterizing her," he said.

But when pneumonia invaded her lungs in 1995, she had to be hospitalized and then moved to a nursing home. She also was losing her ability to swallow and eat.

"She'd bite down so hard, she'd break a plastic spoon," Lawrence recalled. Sometimes, she would choke on her own spittle.

Only a feeding tube could keep her alive, the nurses said. But Gail Lawrence had expressed -- orally and in writing -- her wish not to be kept alive by medical life-support.

At first, Gail Lawrence said no to a feeding tube.

"She said she wanted to die a natural death -- and I couldn't much blame her," Tim Lawrence said.

But her parents were adamant that she be kept alive, and a feeding tube inserted. They insisted that Tim try to change her mind.

"They begged me to beg her," he said. "She said no, and no, and no -- until she finally gave in."

He thinks the feeding tube added to his wife's suffering even as it prolonged her life.

"She suffered physically after that tube went in," he said. "But she didn't want to go against her father."

As soon as the tube was removed, Gail Lawrence grew calm, said Danielle Long, a certified nursing assistant who took care of her for more than a year at Rest Harbor home in Gresham. "You could tell how relieved she was. On the feeding tube, her body was stiff and contracted."

Long described Gail Lawrence's death as "one of the peaceful things I've ever seen."

"It's the patient's choice"

Feeding tubes are used to bypass the mouth in patients who can't swallow or have lost throat control -- meaning they can't keep secretions or food from passing into the lungs and choking them.

Feeding tubes can keep such patients alive indefinitely. They are common in patients with brain damage from trauma or dementia, though exact figures are hard to come by.

"Thousands and thousands upon thousands," said Dr. John Mayberry, a trauma and critical care surgeon at OHSU. He inserts about one a week.

"It's the patient's choice," he said of the decision to remove a feeding tube. The patient's oral or written word trumps the views of family members.

But if the patient cannot speak and there is no written directive, he said, doctors must rely on the word of the family -- which can get tricky.

"If it's one family member, and others say the opposite, typically we don't withhold a feeding tube," he said. Usually, families eventually come to agreement.

But not always, as the Schiavo case shows. And even if there's an expressed wish, as in Gail Lawrence's case, other family dynamics can come into play.

"Families don't fit neatly into categories" on such complex issues, Mayberry said.

"You never know," he said, "how you're going to react until you experience it yourself."

Don Colburn: 503-294-5124; doncolburn@news.oregonian.com

Sorry, that was long, but it just made such an impression on me this morning that I had to share.