Hospital or Family: Who Decides the Right to Die? : Medical ethics: Minneapolis facility seeks to disconnect a comatose patient’s respirator in test case.

Since May, 87-year-old Helen Wanglie has lain unconscious and motionless at the Hennepin County Medical Center here. Although there is no hope for recovery, she is kept alive by a breathing machine, feedings through a stomach tube, and round-the-clock care.

In most such cases, physicians and family agree that further care is futile and quietly let the patient die. Not in the Wanglie case.

In what experts say is the first case of its kind, the hospital is seeking court permission to disconnect Wanglie’s respirator while the family fights to continue her care. The dispute is attracting national attention as a crucial test of whether physicians or patients and their families have the final word about the right to live or die.

At first glance, the situation appears to be the reverse of the case of Nancy Cruzan, the comatose Missouri woman whose family fought all the way to the U.S. Supreme Court for permission to stop her artificial feedings, despite the objections of physicians.

On closer inspection, both cases center on what ethicists call “patient autonomy.” For this reason, the Wanglie family is actually attracting the support of leading right-to-die groups, among others.

“This hospital is trying to turn back the clock and reverse the whole thrust of modern biomedical ethics,” said Susan M. Wolf, an associate for law at the Hastings Center in Briarcliff, N.Y. “If the hospital wins, it means patients or the people they designate to speak for them lose decisional authority that we have all been fighting long and hard to secure for them.”

Dr. Michael Belzer, medical director of the hospital, said physicians should not be forced by families “to provide medical care they feel is inappropriate and which can’t advance the patient’s personal interests. . . . In this extreme case, we feel that the family is not acting appropriately.”

Earlier this month, lawyers for the hospital asked the Hennepin County District Court to disqualify the family from taking part in Wanglie’s medical care and to appoint a conservator who will decide whether the respirator should be disconnected. A hearing on the request is expected within the next several weeks.

Fanella Rouse, executive director of a New York City-based group that monitors right-to-die cases across the country, said the Wanglie case is unprecedented.

Rouse said it would be very unusual for a court to appoint a conservator unless the family is found to be acting in bad faith. Even if a conservator is appointed, there is no certainty that he or she would side with the hospital against the family.

Wanglie’s husband, Oliver, said that his wife told him “many times” during their 53-year marriage that she did not want “her life snuffed out,” even if she was in a coma. He feels strongly that the hospital has no right to disregard her wishes.

“Only He who gave life has the right to take life,” said Oliver Wanglie, an 86-year-old retired lawyer. “The bills are being paid; so what are they complaining about?”

The cost of Wanglie’s care, paid for by a combination of Medicare and private insurance, is estimated to be in excess of $500,000.

Experts in medical ethics said the hospital’s stance, if vindicated in court, may significantly erode the rights of other critically ill patients and their families to reach decisions about respirators, feedings tubes and other life-sustaining treatments.

Dr. Nancy Dickey, American Medical Assn. trustee and ethics expert, said that while the case was “a tough call,” the association’s ethics guidelines support the family’s position.

Many ethicists are also convinced that a hospital victory would “open the door to the disconnection of anyone who is determined to be in a permanent coma,” regardless of whether they require a respirator to breathe, said Arthur Caplan, director of the Center for Biomedical Ethics at the University of Minnesota.

Caplan said that one of the perverse features of the American medical system is that millions of people lack adequate access to medical care when “they are both competent and aware and in need of care. But if you slugged them on the head and put them into a comatose-like state, they seem to be able to command any resources one could imagine.”

About 10,000 patients in the United States are estimated to be in a permanent coma, which in medical parlance is known as the “persistent vegetative state.” Such patients cannot think or communicate, but because their brain stem continues to function, they may be able to breathe, make sounds or move their arms and legs.

In recent years, the best known vegetative state patient has been Cruzan, who died in December after the family won its long court battle against the state of Missouri.

Leading right-to-die groups, which backed the Cruzan family, are also likely to side with the Wanglie family, as long as it is found to be acting in good faith. “We support individual choice,” said Rouse, executive director of Concern for Dying/Society for the Right to Die.

“Physicians are agonizing about what to do for patients in the same condition as Mrs. Wanglie. But many would offer respirator treatment,” Rouse said. “I don’t think one hospital can say we have decided nobody should get it.”

Even supporters of physician-assisted mercy killings, such as the Hemlock Society, are likely to side with the family. “We certainly believe in the right of choice,” said Cheryl Smith, spokeswoman for the pro-euthanasia group. If it is Mrs. Wanglie’s “choice to stay alive, we would support that.”

Medical and legal experts believe that patients in California can take steps to prevent them from ending up in Mrs. Wanglie’s predicament. California law allows patients, before becoming ill, to instruct their physicians about their desires for life-sustaining treatment.

A commonly used form, prepared by the California Medical Assn., lets patients instruct physicians by signing one of three statements ranging from minimal to maximal life sustaining care--or to draft their own. The statement for maximal care reads: “I want my life to be prolonged to the greatest extent possible without regard to my condition, the chances I have for recovery or the cost of the procedures.”

The Wanglie case is part of a broad debate within the medical community about what constitutes futile medical care.

Strictly speaking, care is futile if it does not achieve its specific purpose. Most medical ethicists agree that physicians are under no obligation to offer treatments that are futile in this strict sense, such as offering cardiopulmonary resuscitation to a patient who is near certain death or surgery to a patient who has virtually no chance of surviving the operation.

Those who hold this strict view would argue that when a respirator can keep a patient alive and breathing, as in the Wanglie case, it is not futile to use it.

Some physicians, such as those treating Wanglie, view futile care in more general terms. They argue that treatments such as Wanglie’s respirator are “not worth it” because they cannot improve the patient’s overall medical condition.

In the view of Wolf and others, deciding whether a life-sustaining treatment is “worth it” is a value judgment, not a medical judgment, and belongs to patients or their families.

In December, 1989, Wanglie, the daughter of a Lutheran clergyman and a retired high school teacher, tripped on a rug in her hallway and fractured her right hip. She was admitted to a private hospital and had hip surgery.

In January, 1990, Wanglie developed pneumonia and was transferred to the county medical center. After her lungs failed, she was placed on a respirator.

During five months of treatment, Wanglie remained conscious and able to communicate. Her lungs remained so weak that she needed a respirator to help her breathe. During this time, she never prepared a living will or other written instructions about what care she wanted to receive.

In May, Wanglie was transferred to another hospital, which specializes in lung care, for further efforts to allow her to breathe without the respirator. About a week later, her heart unexpectedly stopped. Doctors were able to restart her heartbeat, but not before her brain was severely, and irreversibly, damaged by a lack of oxygen.

At her family’s request, Wanglie was transferred back to Hennepin County Medical Center. In June, physicians suggested that the respirator should be removed--and Wanglie allowed to die--because of her condition. The family said no, but agreed that physicians would not restart Wanglie’s heartbeat if it stopped again.

The respirator issue was not raised again until last fall, when the hospital initiated a series of events that have led to the current standoff.

Physicians asked the family to either let them turn off the respirator or transfer Wanglie to another hospital. After the family said no, the hospital sought permission from the county board of commissioners, its governing body, to bring the case to court. Permission was granted by a 4-3 vote, and court papers were filed Feb. 8.

The Wanglie family--Oliver and children Ruth and David--feels that hospital officials have betrayed their trust.

“Dr. Belzer told us that he wouldn’t bring it (the respirator) up again, but he did,” Oliver Wanglie said. “Those ‘humanistic’ doctors just want to snuff out her life.”

When asked if he understood the doctor’s conviction that his wife’s condition would never improve, Wanglie said: “That may be true, (but) we hope for the best.”

Hospital officials argue that the family’s insistence on using the respirator is not in Wanglie’s best interests given her inability to recover. They also doubt that the family’s view reflects what the patient would really want.

“We have a situation where the use of the respirator for six months going on a year for a comatose patient (who is not going to wake up) is simply not done,” said Dr. Steven Miles, a Hennepin physician who has been an ethics consultant on the Wanglie case. “It is not reasonable to speak of her having a perception of any kind of quality of life that she could enjoy or find acceptable or not.”

Miles also disputed Mr. Wanglie’s claim that his wife had repeatedly told him about her wishes for continuing the respirator and other therapies. He said the family “never said that she had made any statement with regard to this issue” until after hospital officials announced that they were taking the case to court.

Belzer insisted that the hospital had no wish “to set a legal precedent that physicians should have the final say in termination of care cases over the objections of the family,” although he acknowledged that the case might lead to that result. “Sometimes you just stand up for what is right.”

Belzer said Hennepin was not trying “to play hardball” and was “taking all the appropriate steps that any reasonable, sensible institution or group of physicians would do.”

“If I wanted to extricate Mrs. Wanglie from this world, there are a lot of other ways to do it. Why didn’t we just disconnect her (from the respirator) and then let the dust settle and then deal with the courts after that? Under Minneapolis law, it would not be homicide. We might get charged with something but that would be a way to do it.”

Wanglie continues to lie motionless in her private room, oblivious to the controversy that is swirling around her.

“The nurses have done a wonderful job,” Belzer said. “She looks pretty good for 87 and a persistent vegetative state. Cosmetically, she is doing fine.”