Solace, Pain Accompany Life-and-Death Decisions

The husband and father failed to rally after last-ditch cancer surgery. His despairing family gathered at City of Hope National Medical Center to contemplate the ventilator that kept him alive.

He left no living will, no written directives on whether to artificially extend his life. But he and his wife had followed media reports on the Terri Schiavo case.

Betty Ferrell, a clinical researcher for end-of-life care at the Duarte medical center, related the wife’s anguished words, spoken to nurses and doctors after her husband could no longer speak for himself:

“We were watching the news and my husband said, ‘If I’m ever like that Terri Schiavo, I don’t want to be kept alive.’ ”

And so she focused her thoughts on the ventilator.

The Schiavo saga has hit close to home at hospital bedsides these last few weeks, as relatives of the deathly ill confront the same decisions that split the Florida woman’s family and sparked a national debate.

Schiavo died Thursday, 13 days after a judge ordered the removal of her feeding tube, which had sustained her since she suffered brain damage 15 years ago.

For some whose wrenching, end-of-life choices are weighed in private, the public parading of the Schiavo case has eased the ordeal. But it has worsened the agony for others, physicians and healthcare counselors say.

It has reassured many who believe that an existence dependent on ventilators and feeding tubes is not worth prolonging, medical professionals say.

But they add that the determination of Schiavo’s parents to keep her alive, against what her husband insisted were her own wishes, has caused relatives at hospitals and nursing homes to wonder if they have done enough for their loved ones.

“Even people who thought they were certain before this case are having a lot of uncertainty,” Ferrell said.

“Before Terri Schiavo, things had seemed black and white,” she added.

She told of two bereaved people who recently decided to forgo ventilators for family members, who died shortly afterward.

“Just when they’re starting to feel some sort of peacefulness ... they turn on the news and say, ‘Did I do everything I should have?’ ” Ferrell said.

Ilena Blicker, a neurologist at Glendale Memorial Hospital and Health Center, said the Schiavo case similarly touched the family of a man with brain trauma. The relatives were divided over how long to keep him on a ventilator.

“They were afraid to let go, that somehow they were the ones causing the patient not to get better in the future,” Blicker said.

“And part of the family was saying, ‘We don’t want the situation where we keep Dad going for no real reason ... like Schiavo.’ ”

In the end, the family reached a compromise: The ventilator would remain until his heart stopped, and there would no effort to resuscitate him.

Blicker said the blanket media coverage of the Schiavo drama fostered misconceptions. “People were hearing different things,” she said.

“They’re confused by some of the arguments back and forth. They would ask, ‘If you stop something, do you have to go to the courts all the time?’ It doesn’t help.”

Betty Chang Knorr lost her 65-year-old husband two days after Schiavo’s feeding tube was removed. Siegfried Knorr, an electrical engineer and inventor who owned a Santa Monica high-tech company, died of a neurological disease.

He had left instructions that he not be kept alive by extraordinary means, but they were vague, Betty Knorr said. The Encino resident and retired UCLA nursing professor said she did not let the Schiavo case influence her decision to withhold a ventilator or feeding tube.

But she said she was struck by the images of Schiavo “with her mouth wide open, her eyes sunken.... I would not want to put my husband through that, especially the stomach tube.

“It may have extended his life, but he would have just been lying there, maybe semi-responding. He still wouldn’t have been able to regain his functions. He wouldn’t have been able to talk.”

She said she sympathized with Schiavo’s parents as well as with her husband, Michael Schiavo, and found the publicity around their torment disturbing.

“This is a private decision,” she said.

Renee Smilde, a doctor of internal medicine and palliative care at Scripps Mercy Hospital in San Diego, said her patients and their relatives have also recoiled from the attention the Schiavo case has received.

“They feel they have to take better care of their affairs so this won’t go public,” Smilde said. “It’s difficult to make a decision if you’re leaning toward removing a feeding tube or life support ... and you see people demonstrating on TV with water bottles.”

At UC San Francisco Medical Center, Steven Pantilat, a palliative care physician, said some Schiavo media reports have created an impression that removing a feeding tube would lead to a painful death from hunger. He said he has assured families that patients taken off the tube would not feel discomfort.

“Everybody is worried about starving to death,” Pantilat said. “I’ve had to tell people this is dehydration, it is not starving to death.”

One family in particular, he said, went through a “lot of worry and concern” before deciding to remove a ventilator and feeding tube from a mother.

“These are decisions I help families make every day,” he said. “This is actually very routine.” Like other physicians, Pantilat criticized the attempts by Congress and President Bush to intervene in the Schiavo matter. “Totally inappropriate,” he said.

Dr. David Goldstein, chief of geriatric and general internal medicine at Los Angeles County-USC Medical Center, predicted that the Schiavo case would have no lasting effect on how caregivers help families deal with the end-of-life decisions.

“I don’t think it changes a whit what we do in hospitals,” he said. “Patients and their families and their loved ones get deeply involved in this, no matter what. We do this multiple times a week.”

At City of Hope, the relatives of the man on the ventilator elected to wait. They wanted time for his son to arrive from out of state and for a minister to visit.

And then, Ferrell said, they decided. The ventilator was removed.