Kept Alive, but to Live What Kind of Life?

The woman who putters in the garden at the blue stucco house is bony and frail, with a soft handshake and wide blue eyes. She brings to mind a character from a Tennessee Williams play--delicate, ethereal, immersed in a world of her own.

Linda Schneider’s mind is slipping away; a rare genetic disorder is eating at the gray matter inside her skull. Her conversation is like water rolling across a tabletop--elusive, hard to grasp. Her memory dances in and out of reality; once, she confides, her nurses tried to poison her food.

“I was not going to eat it,” she says, as if sharing a conspiratorial secret. “It was black spots.”

Not so long ago, this 49-year-old woman was active and vibrant, a dental hygienist and part-time travel agent. Now she spends her days padding around the house, tending to her potted petunias.

She has little idea that she is helping to write a chapter in the annals of medical ethics and law.

Two years ago, Schneider lay dying in a sterile hospital room. Seizures wracked her tiny body, already worn down by diabetes and pneumonia. Her brain was turning into jelly. She was comatose.

Lee Schneider was prepared to let his wife die. As Linda’s “health proxy,” he had legal responsibility for her care. Just keep her comfortable, he told her doctors. No extraordinary measures.

But Dr. Oscar Abeliuk, her neurologist, didn’t quite trust Lee. So he and a colleague at John Muir Medical Center took steps to spare Linda from death. And now Lee is suing them and their hospital--for keeping his wife alive.

The case of Schneider vs. Abeliuk is unusual, but not unique. It is part of a new wave of lawsuits that illuminate a little-known barrier in the quest by many Americans to control how they die. These suits accuse doctors of failing to follow the patients’ “advance directives.”

The common complaint: “Wrongful life.”

Fear of a lonely, impersonal death is driving a patients’ revolt against high-tech medicine. According to the New York-based group Choice in Dying, about 20% of Americans--and 50% of seriously ill hospital patients--have completed advance directives. The documents come in two basic forms: a living will, in which patients outline their wishes in writing; and medical powers of attorney, in which relatives are legally designated as health proxies, as was Schneider’s husband.

But what is clean and neat and legal on paper is not always clean and neat and practical inside a hospital room. Medicine is as much art as science. Every day, doctors like Abeliuk make snap decisions, wishing they could predict the future. The best-laid plans get tossed out the window.

“You can put all these things in nice legal terms and talk about it very rationally,” says Richard Wade, spokesman for the American Hospital Assn. “But when it gets down to the patient and the family and the caregiver, it is something very different. You’re dealing with human drama, and it’s harder to know what the right thing is to do.”

Then along comes Lee Schneider, pushing the edge of the right-to-die envelope. The suit he is pressing is hardly the classic story of the 90-year-old being propped up by a respirator. His wife may have many more years to live. Her health will almost certainly decline. Her husband is her caretaker, 24 hours a day.

And the question he raises is a thorny one that modern medicine is not ready to grapple with: When is a life no longer worth living?

“Most people, when they think of living wills, think about cancer and dying in pain,” says Arthur Caplan, director of the Center for Bioethics at the University of Pennsylvania. “But there is a much bigger issue that isn’t captured by those cases, and that is what to do about becoming demented.

“We have not yet said in our society that people should have the right not to go into a demented, disoriented, undignified future. It takes us to the question of: ‘Are we playing God?’ ”

*

Lee Schneider hardly believes he is playing God.

At 51, he is a no-nonsense man, a former Internal Revenue Service auditor who retired on a disability pension with a bad back in 1982. Looking back, he can see the first clues of his wife’s illness, although he failed to recognize them then.

There were tiny, unexplained changes in Linda’s behavior. At work, she was slowing down. At home, she might disappear for an hour or two, with vague explanations later. Sometimes, her reasoning seemed not to make sense.

Lee was not particularly alarmed at his wife’s behavior. He chalked it up to bad hearing; Linda had worn hearing aids for years. “I tend to be a pretty reserved person,” he says. “I’m a brooder, slow to react.”

That changed on July 25, 1994. On that Monday morning, after a bout with what she thought was the flu, Linda fell apart. She had trouble talking and complained of buzzing in her ear. She was weak and could barely walk. She appeared to be having a stroke.

Lee took his wife to the emergency room at John Muir Medical Center, where doctors drew a blood sample. “How long has your wife been diabetic?” they asked after checking her blood sugar. Lee’s reply: “We didn’t know she was.”

The doctors scanned Linda’s brain; her cerebellum--which helps control movement and speech--was shrinking. Later, there would be evidence that her cerebral cortex, which controls conscious thought and memory, had atrophied too.

Lee remembers a doctor’s grave counsel: “He took me outside. He said: ‘I don’t know what’s wrong with your wife. In my opinion, it’s more than diabetes. I have seen cases where people are perfectly normal and have just lost their minds. Let me tell you up front, these things don’t usually have happy outcomes.’ ”

*

Six years earlier, at their lawyer’s urging, the Schneiders had tried to plan for their final days. After they drafted a document giving them medical power of attorney for Lee’s aging parents, the lawyer turned to them and said, “OK, now what about you?”

Lee says it was surprisingly easy. His views and his wife’s were similar, and firm. Linda’s opinions, Lee says, were rooted in her days volunteering as a dental hygienist in nursing homes.

“She would clean teeth for these old people and she would come home all upset and depressed because they were keeping people alive who, in her opinion, were past their useful life.”

On Jan. 19, 1988, Linda designated Lee as her health proxy. Her instructions: No life-sustaining treatment “if I am in a coma which my doctors have reasonably concluded is irreversible” or “if I have an incurable or terminal condition and no reasonable hope of long-term recovery or survival.”

Nor was there to be treatment “if the burdens of the treatment outweigh the expected benefits. My attorney-in-fact is to consider the relief of suffering, the preservation or restoration of functioning and the quality as well as the extent of the possible extension of my life.”

*

It was the case of Karen Ann Quinlan, whose parents sued in 1975 to remove her from life support, that brought right-to-die issues to the fore. Since then, countless Americans have taken steps to control their own deaths.

Now there are laws to back them up. In 1990, two years after the Schneiders designated one another as their health proxies, Congress enacted the Patient Self-Determination Act, which requires hospitals to inform patients of their right to file advance directives and to refuse medical treatment. By 1992, every state had either case law or an explicit statute permitting advance directives.

But while the concept has caught fire, medical practice has lagged behind. Advance directives have done little to change care, studies show, in large part because of a lack of communication between doctors and patients. Sometimes, doctors are not aware of living wills; other times, the documents are misinterpreted.

A recent study conducted in five hospitals found fewer than half the doctors knew when patients wanted to avoid resuscitation.

Said medical ethicist George Annas of Boston University: “If dying patients want to retain control over their dying process, they must get out of the hospital if they are in and stay out of the hospital if they are out.”

*

Linda Schneider’s descent is chronicled in a slim, spiral-bound notebook, recorded in the shaky hand of her aging mother.

Sue Stone had been by her daughter’s side throughout the summer and fall of 1994. Those months were a blur of hospital stays, with Linda shuttled between John Muir and the hospital at UC San Francisco. Abeliuk, a neurologist, was in charge of her care, along with Dr. Richard Kamrath, an endocrinologist.

Linda had her doctors stumped. Their best guess--although it turned out to be incorrect--was that she suffered from Creutzfeldt-Jakob disease, a rare degenerative brain affliction.

On Sept. 29, 1994, Linda was admitted to John Muir for the fourth time in two months. So grave was her condition that Abeliuk told Lee to bring the durable power of attorney to the hospital and place it in his wife’s file. Stone jotted these notes in her diary:

9/29. Thurs. Linda very weak--on bed. I tried to feed her cottage cheese and papaya. Unable to get food past teeth. . . . To Dr. Abeliuk’s office 2:15 p.m. Admitted to J.M. 3:30 p.m.

9/30. Fri. Seizures activity every five mins. . . . Dr. Abeliuk visited at 8 p.m. . . . I just asked that she be made comfortable--not to prolong her life in this situation.

10/2. Sunday. Dr. Hudson just visited. . . . Tomorrow they may want to tube-feed her and they wonder about antibiotics.

*

Dr. Lisa Hudson, a young endocrinologist, was filling in on weekend duty for Kamrath. She knew nothing, her lawyer now says, of any durable power of attorney.

Hudson’s suggestion of antibiotics and tube-feeding was routine. The idea was to keep Linda alive until a brain biopsy could confirm her diagnosis and prove whether she was truly terminally ill.

To Stone, this made little sense. What could be learned from a biopsy, she asks, that could not be learned from an autopsy? Besides, she says, when Linda was well enough to talk for herself, she had refused Abeliuk’s request for a biopsy. “Linda,” she says, “had specifically ordered that they not do things like that to her.”

But Linda’s mother kept her objections to herself; she feared that challenging the doctor might compromise her daughter’s care.

That night, Lee learned of the tube-feeding plan from the nurses. He was stunned. He tried frantically to call Hudson. Her answering service took messages; she says, through her lawyer, she never got them. Then he phoned Abeliuk, also to no avail.

The next morning, Lee returned to the hospital. The tube-feeding and antibiotics had begun, with Hudson issuing the orders after Abeliuk agreed. That day, Lee called the neurologist. By Lee’s telling, the conversation was testy.

“I’m the doctor,” he recalls Abeliuk as saying, “and so long as I’m in charge, this is what we are going to do.”

*

Oscar Abeliuk had his reasons. For starters, he says in a legal declaration, he felt uneasy about his patient’s husband.

A psychiatric evaluation, conducted upon Linda’s second admission to John Muir, hinted at problems in the Schneiders’ marriage. The couple had been divorced 18 years earlier and then quickly remarried. They maintained separate bank accounts, owned property separately and, psychiatrist Nestor Vaschetto wrote to the hospital, “are apparently going through lack of trust in each other and estrangement.”

Lee says the psychiatrist’s assessment, contained in the case file, is incorrect. The separate bank accounts and property, he explains, are the result of an inheritance. Stone fully supports Lee; watching him take care of her daughter, she says, “I realize how strongly he feels about Linda.”

How much the psychiatrist’s remarks colored Abeliuk’s decision is unclear; the neurologist, like Hudson, declined to be interviewed.

But in court papers, Abeliuk declares that before he would withhold tube-feeding, he wanted to talk to other doctors and family members, in part because of concerns about the marriage.

“I felt that a biopsy should be done,” Abeliuk wrote, “so we could establish a reliable diagnosis and prognosis before the decision to let her die was made.”

Ultimately, Linda came out of her coma. A biopsy was done, with Lee’s consent. It ruled out Creutzfelt-Jakob disease.

Blood tests eventually showed she had MELAS Syndrome. Mitchondrial Encephalopathy Latic Acidosis Syndrome, a rare genetic affliction whose result can be mild to devastating, accounts for Linda’s bizarre symptoms--the deafness, diabetes, seizures and dementia.

There is no cure, although there are a few experimental treatments. Its course is unpredictable. The likely scenario for Linda, experts say, will be future episodes--Lee calls them “meltdowns”--of the sort she had in 1994, each one leaving her more disabled than the last. Sooner or later, an episode would kill her.

To Stone, it is a terrifying future. “What,” she asks, “do we have to look forward to?”

*

In the end, it will be for a jury to decide whether what happened at John Muir Medical Center in October 1994 was a case of medical hubris or humility.

Ethicists are mixed. Some, like Caplan, say the doctors did the right thing. Issues of trust between physicians and family members surface all the time in living wills. For doctors, Caplan says, there is just one correct guiding principle: “When in doubt, you treat.”

Not so, says Dr. Steven Miles, a geriatrics expert and bioethicist at the University of Minnesota. It is a patient’s well-established legal right, Miles says, to refuse treatment. That right does not go away when a person becomes incompetent and a health proxy takes over, and it is not contingent on being terminally ill. People can refuse aspirin if they want.

Moreover, Miles says, it is not the job of the doctor to play marriage counselor. If Abeliuk had reservations about Lee Schneider, he should have taken them before a judge and asked that the durable power of attorney be invalidated.

*

Trial is set for March.

Montie Day, Lee Schneider’s lawyer, is alleging battery--in essence, that doctors assaulted Linda by inflicting treatment she did not want--as well as a violation of her constitutional rights. He is seeking an unspecified amount of damages, and payment by the hospital of all future medical care.

The case, Caplan predicts, will be nearly impossible to win; juries rarely fault a doctor for keeping a patient alive. Since the late 1980s, Choice in Dying has tracked 10 such cases; only one has resulted in a jury award for the family.

This year, a Michigan woman won a $16.5-million verdict. Now incapacitated, she had suffered a brain hemorrhage and seizures. Despite having an advance directive she was maintained through a two-month coma.

In Walnut Creek, a central question will undoubtedly emerge: How could Lee Schneider possibly suggest that his wife would be better off dead?

“Does she derive pleasure out of watering the flowers, out of walking outside when the sun is shining?” asks Stuart Candland, Hudson’s attorney. “Does she watch TV? Does she listen to music? Enjoy the symphony?”

Lee resents the suggestion that a lawyer or doctor knows better what his wife would have wanted.

“If you asked her today if she wants to live or die, she’s going to tell you, ‘I want to live,’ of course,” he says. “But if she had the same mental capabilities that she had when she signed that durable power of attorney and was told, ‘You’re going to get sick and this is the way you’re going to be for the rest of your life. Do you want to be saved?’ I know in my heart she’d say, ‘Absolutely not.’ ”

He is angry not only at what has happened to his wife, but also at the hand fate has dealt him. It is he who must tend to his daughter and son, now 14 and 20, and cope with the knowledge that they carry the genetic mutation that will claim their mother’s life. It is he who must grapple with medical bills and insurance, and who must take care of his fragile wife.

He knows that sounds selfish and cold-hearted. But to those who would disagree--who would argue that he is wishing his wife were dead for his own convenience--Lee Schneider says: “They ought to have to wear these shoes for a while and see how they fit.”