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Tuesday, January 2, 2001 | Print this story
Out of a Coma, Into a Twilight
His mother says he can kiss her hand. She is fighting to keep him alive.
His wife says he "died seven years ago" in a car accident. What she calls the "shell" that remains of Robert Wendland cannot recognize her or their children. They have gone to court to let him die.
Five years ago, a court denied the family the right to remove the tube that gives Wendland food and water. The judge spoke of the anguish the case had caused him.
"I don't know at this point," said San Joaquin County Superior Court Judge Bob W. McNatt, "whether here today I am preserving Robert's life or if I am sentencing him to life."
Now, his fate has reached the California Supreme Court. And although he almost certainly does not know it, Robert Wendland has become a test case. What happens to him could determine the future for thousands of patients who linger in the twilight between consciousness and coma.
A generation ago, starting with the celebrated case of Karen Ann Quinlan, courts ruled that families could remove life support from patients who were comatose or otherwise permanently without consciousness.
Wendland's case is different. He is clearly conscious--"minimally conscious" in medical jargon. He is aware of his environment, experiences pain and shows flashes of what appear to be anger and frustration. He can be trained to follow basic commands, but shows no signs of being able to comprehend more. He has no terminal illness, but virtually no chance of improvement. Medical experts say he could live in his current state for decades.
Rose Wendland insists that her husband of 22 years did not want to live like this. "That isn't Robert," she said of the man propped up in bed, staring at a television screen. "This is something we have allowed."
A court decision allowing her to remove Robert's life support would significantly widen the scope of laws that permit surrogates to terminate treatment for loved ones. Accident victims, stroke patients and perhaps many sufferers from advanced cases of Alzheimer's disease could all be affected.
Rose Wendland is Robert's legal conservator. Under California law, that role gives her the right to decide to withhold medical treatment, including tube feeding, from him if she is acting in good faith based on medical advice and considers whatever wishes he may have expressed.
But his mother, Florence Wendland, contends that the law, if applied to a minimally conscious person, would be unconstitutional. The legal standard would make it easier to kill a disabled person than to sterilize one, she has argued.
Until now, courts across the nation have allowed surrogates to authorize the removal of feeding tubes only from people who were either terminally ill or unconscious. State high courts in Wisconsin and Michigan have refused to let families withdraw food and nutrition from non-terminal, conscious patients.
"Heretofore, we thought that the division between consciousness and unconsciousness was a bright line and we should not cross that line in considering withdrawal of care," said Dr. Nancy Childs, a Texas neurologist whose specialty is rehabilitation of brain-injured patients. "This is expanding the boundaries."
"This issue is huge," said Oakland lawyer Jon Eisenberg, who represents bioethicists and others who support Rose's right to make the decision.
"It is going to touch nearly every one of us as we deal with our parents' aging and our own aging in years to come."
A Visit With Robert
Robert Wendland looks startlingly well for all his injuries. During a visit by his wife, his hair was neatly combed and his mustache trimmed. Sitting in his hospital room, he watched a ballgame on television.
Robert is paralyzed on his right side, and his right eye stares vacantly. But he appears to track with his left eye. His mouth is slightly slanted, like that of a stroke victim.
Rose, 43, is attractive, with dark hair pulled back from her face in a ponytail. She said hello to Robert, but he did not appear to recognize her. She turned to inspect his room.
His mother had left him a doll, a pink and blue bunny and a spotted bear. Rose was agitated. They demeaned Robert, she said.
A collection of caps hung on the wall. Robert hated to wear hats, Rose observed.
Robert scratched his head and mustache, chewed his lips and turned every once in a while to look at his visitors before returning his gaze to the television. His expression at times was infantile.
A nurse came in the room to reinsert his tracheotomy tube. "Robert," she told him, "I am going to put this back in." Robert sat still while she did. "Thank you," the nurse told him.
The nurse, a pleasant, middle-aged woman, said Robert recognizes her. She has been his nurse for two years. She said he likes watching sports more than movies or cartoons.
"Cartoons!" Rose said, scornfully.
Robert never liked to watch sports when he was well, Rose said. He preferred news programs. Medical experts say Robert cannot comprehend what he is watching.
The nurse pointed out a toy--a box with openings for different shaped blocks. His mother plays it with him, the nurse said. "And he can do it."
On his wall hangs a plaque that named Robert the hospital's bowling champion in 1999. The bowling device at the hospital consists of a lightweight ball on a ramp. Robert pushes it.
Rose was not impressed. "A 1-year-old can do that," she said of the toy with blocks. The fact that Robert could push a ball down a ramp also gave her no comfort.
"Am I happy that maybe he can recognize a nurse who has been here for two years and not his children? Not his wife? Now what does that mean? That his mom sits there playing those blocks with him? No. It doesn't mean anything. It disgusts me, to tell you the truth."
Rose no longer visits Robert regularly.
As for the couple's three children, Katie, 22, Kerrie, 20, and Robert, 15, Rose said she has strived not to let "the tragedy" overwhelm their lives.
Her eldest daughter just graduated from Cal State Long Beach, which her other daughter attends. All three children have done well in school despite holding jobs to help their mother make ends meet. She has not encouraged them to visit their father. They rarely do.
An Accident 7 Years Ago
The family's ordeal began with an accident on Sept. 29, 1993.
Robert had been drinking.
He had struggled with alcohol for years, quitting for months, even a year at a time, and then relapsing. "He didn't drink every day, but when he did, he would drink until he passed out," Rose said.
He had gone to pick up Rose's sister from work late one evening. Rose was ill and had gone to bed early. Robert had a six-pack and a new Paul McCartney tape with him, and he wanted to drive around the country roads and listen to it.
He lost control of his truck when trying to make a U-turn, and it turned over. Rose's sister survived, although she was badly injured. Robert was in a coma.
That first year, Rose and their children spent almost every day with Robert. The children did their homework in his room, and the family brought in a VCR and a small refrigerator.
Rose legally could have authorized the removal of his feeding tube while Robert was in a coma. But at the time, she said, she could not bear to let him die.
"I thought he was a strong man and would come back," Rose said. "I didn't realize he had no choice. His brain was gone."
Seventeen months later, Robert emerged from the coma. Doctors told the family that he would be akin to a vegetable.
He pulled his feeding tube out several times, and the last time, Rose said, her eldest child begged her to reconsider before reinserting it.
"Mom, why are you doing this?" Rose remembers her daughter saying.
Three months before Robert's accident, Rose had needed to decide whether to disconnect her father from life support. She and Robert had agreed her father should be allowed to die.
At that time, Rose said, Robert told her that she should never keep him alive on tubes.
After a night spent talking and crying, the family decided to let Robert die. Rose said she and her children believe they will see Robert in heaven.
"Why wouldn't I wish that for Robert? That he could go to his maker?" she said.
But someone at the hospital tipped off Robert's mother.
Florence Wendland and one of her daughters obtained a restraining order to prevent the withdrawal of the tube that gives Robert food and water.
Since then, the courts have assigned Robert his own attorneys, paid for by the state. A trial judge and an appellate court have ruled in the case, and a host of experts have weighed in.
So, too, have advocates for the right-to-die movement, supporting Robert's wife, and the anti-abortion movement, supporting his mother.
The fight over Robert Wendland went to trial in Stockton in September 1995. Both his wife and brother testified that Robert said he would not want to be kept alive with tubes. But Judge McNatt decided against allowing removal of the feeding tube even before he heard Florence Wendland's witnesses.
The judge praised Rose Wendland, calling her "one of the most selfless wives that anyone has ever seen." But, he said, she had not proven by "clear and convincing evidence" that Robert would have wished to die.
His ruling was the "absolutely wrong decision for all the right reasons," the judge said, adding that he took comfort in knowing that a higher court would probably review the case.
When that review came, a Court of Appeal in Sacramento overturned McNatt's decision. The appeals panel said the judge had applied the wrong legal test. Rose Wendland did not have to prove that Robert would have wanted to die, the judges said. The law asks only whether she was acting in good faith based on medical advice.
In her appeal to the California Supreme Court, Florence Wendland argues that that legal test violates Robert's constitutional right to life. For her part, Rose contends that Robert has a constitutional right to refuse medical treatment.
Several disability rights groups have lined up in support of Florence Wendland. They fear abusive conservators will shut off life support to patients who would have chosen to live.
On the other side are bioethicists, the California Medical Assn., several hospitals, including a group representing 65 Catholic hospitals and 40 nursing facilities, health associations, and the American Civil Liberties Union.
If the California Supreme Court requires "clear and convincing" evidence that a patient would have wished to die, "the actual effect of that is everybody is going to be kept alive," said James M. Braden, a court-appointed attorney for Robert since April 1998.
In deciding whether to terminate medical care, courts have examined statements made by patients before their injuries. But Dr. Childs said wishes expressed by healthy people may not reflect their preferences after becoming disabled.
"There is this whole concept and argument that you are not the same person, your mind is not the same."
Few people leave written instructions to families--Robert did not do so--and those who give verbal directions usually don't envision every medical scenario.
"The question this litigation presents is this," said Eisenberg, who represents bioethics groups: "Are we going to hold people to a very high standard of proof before we acquiesce to their wishes?"
Rare Cases of Recovery Raise Hope
Experts believe there may be as many as 40,000 patients in the United States in a persistent vegetative state--able to open and move their eyes, but unconscious. Traumatic brain injury leaves more than 75,000 people with long-term disabilities each year.
Sometimes patients are misdiagnosed as vegetative before caregivers discover they are conscious. In one case, Dr. Douglas I. Katz, a Boston University neurologist, said he suspected a patient was not truly vegetative because she grimaced or cried when shown a picture of her child. He decided to test her by showing several pictures of children, including her own. She reacted more strongly to her child's picture, he said.
A famous example of misdiagnosis was the case of Julia Tavalar, who with Richard Tayson wrote a book called "Look Up for Yes" and whose story was reported by the Los Angeles Times Magazine. Tavalar woke up from a coma-like state several months after suffering strokes. Because she was paralyzed and therefore could not speak, no one discovered for six years that she was conscious.
In other cases, known as "miracle wake-ups," patients have regained consciousness after years of being in a vegetative or semiconscious state.
A Tennessee policeman who had only slight consciousness for eight years stunned everyone around him by suddenly talking and telling jokes one day in 1996. He recognized his sons and spoke coherently for 18 hours.
That burst of clarity quickly faded, however. He died a year later from a blood clot.
Although such cases raise hope, the prognosis for Robert Wendland is poor because of the passage of so many years without significant improvement. In most cases when recovery occurs, it takes place within the first two years after the injury.
CAT scans show that Robert has moderate atrophy of his brain, a sign of permanent brain damage, said Dr. Ronald E. Cranford, who testified on behalf of Rose in the case.
If his feeding tube were removed, Robert would probably die within 14 days--of dehydration, not starvation--said Cranford, a clinical ethicist and neurologist who has consulted in several landmark, termination-of-treatment cases. In the final two to four days, Robert's extremities would become cold and his skin mottled. Because he is conscious and can experience pain, he would be given medication, and possibly even be put into a coma, to prevent suffering.
Florence Wendland said she will take the case to the U.S. Supreme Court to prevent this conclusion to Robert's life.
Robert was the second oldest of Florence's eight children. Several of the children left home before they were 18. Before the accident, Robert and his mother were estranged, said Rose and Robert's brother, Michael Hoffer.
"He didn't want anything to do with her," Rose said.
Now, Florence is Robert's only regular visitor.
At 78, she is a frail woman with faded red hair, glasses and a hearing aid. She rides the bus to the hospital three days a week to be with Robert.
Florence said her five-hour visits with Robert pass swiftly. She pushes him in a wheelchair, reads and sings to him, and works with him using the blocks.
She said Robert enjoys his activities, particularly bowling with the little ball on the ramp. "He bowled 125 last week," she said. "And he sure enjoys his sleeping."
Although Robert "doesn't show emotions like we do," Florence said, he has his "moods" and expresses preferences. "If he likes things, he does them and if he doesn't, he doesn't," she said.
She believes Robert was thriving when he was receiving therapy. He could write the letters R and O and maneuver, with help, in a wheelchair. But the state stopped paying for the therapy after doctors concluded that it was not truly benefiting him.
"If he had had his therapy, goodness, we could have taken him out to a park by now," his mother said.
At the end of her hospital visits with Robert, Florence said, "I'll tell him, 'Robert, I am ready to go.' Then he starts watching me. It just kills my heart to see him watching because he looks at me, like, 'Please don't go, Mama.' "
But experts who have examined Robert said that despite Florence's optimism about therapy, improvement of his condition is "extremely unlikely."
"It is difficult to know how aware Robert is of his condition," wrote one of the experts, Dr. Paula Sundance. "Indeed, I would hope that his level of awareness is low."
Copyright 2001 Los Angeles Times