Many patients' lives at risk

California Supreme Court to Decide Fate of Robert Wendland

By Liz Townsend

Within the next few months the California Supreme Court will come down with a fateful decision in the case of Robert Wendland, the disabled California man who has been the focus of a protracted court battle over his wife's insistence that doctors withdraw his food and fluids.

Wendland, although severely brain damaged since a 1993 car accident, is conscious and can sometimes respond to his environment. He cannot talk or walk and requires a feeding tube to provide life-sustaining nutrition and hydration.

Disability rights advocates worry that if his nourishment is withdrawn, it could easily unleash a widespread pattern of withdrawal well beyond those currently most at risk: people diagnosed as being terminally ill or in a so-called "persistent vegetative state" (PVS).

Wendland's mother and sister have resolutely led the fight against withdrawal of his feeding tube. They brought the case to the California Supreme Court after the state Court of Appeals ruled in favor of Rose Wendland, Robert's wife and legal conservator. On February 24, 2000, the appeals court said that California law -- known as section 2355 -- allows guardians to make life-ending decisions as long as they act in "good faith" based on medical advice.

The justices stated that section 2355 applies "to a conservator's decision to withhold life-sustaining nutrition/hydration from a conservatee who has been adjudicated to lack capacity to make his own decision, but who is not terminally ill or PVS."

Thus the appeals court added its imprimatur to the relentless campaign to make it possible to withdraw food and fluids from a wider and wider circle of people with disabilities. This alarming drive is grounded in a new standard for making these life and death decisions.

For example, the appeals court decision would not allow courts to independently evaluate the expressed wishes of the patient before the disability was incurred or even the best interests of the patient, as long as the guardian has said he/she has taken them into consideration. "[T]he court is merely to satisfy itself that the conservator has considered the conservatee's best interest," the appeals court wrote.

In plain language, the appeals court ruled that the guardian of a disabled person in California has complete and final discretion to starve and dehydrate the patient, as long as a doctor approves and as long as there is no proof the guardian made the decision in bad faith.

"It means that the person making the decision is the most important factor, not the wishes of the patient or even the patient's best interests," Tom Marzen of the National Legal Center for the Medically Dependent and Disabled told NRL News. "It places the burden on a nonguardian to prove the conservator is doing something bad, which is normally extremely difficult."

Marzen said that, if this decision were upheld by the state Supreme Court, the lives of many, many more people would be endangered. "It would affect large numbers of people in nursing homes, for example, who are conscious but not capable of making their own decisions," he said. "And if the California court accepts that rule, courts in other states may adopt it as well."

Wendland, now 48 years old, was in a coma from his September 29, 1993, accident until January 1995. He emerged from the coma, received physical therapy, and began to show some limited improvement, although he remained profoundly disabled.

According to the appeals court decision, Wendland was occasionally able to "grasp and release a ball, operate an electric wheelchair with a 'joystick,' move himself in a manual wheelchair with his left hand or foot, balance himself momentarily in a 'standing frame' while grabbing and pulling 'thera-putty,' draw the letter 'R,' and choose and replace requested color blocks out of several color choices" with the assistance and encouragement of physical therapists.

Rose Wendland has dismissed such actions as "involuntary," according to an interview on Good Morning America in January 2001. When told that Robert's mother reports that he can kiss her hand, toss a ball, and follow simple commands, Rose responded, "Well, no one's ever seen that, as far as kissing her hand, not even the nurses. But as far as tossing the ball, he can move his left arm, hand. And it's involuntary. It's uncontrollable."

She also dismisses other reports that he can recognize nurses who care for him often and can play a game of matching blocks with his mother. "A one-year-old can do that," she told the Los Angeles Times. "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."

In July 1995, Rose Wendland decided to withhold her husband's feeding tube. Robert's mother, Florence Wendland, and his sister, Rebekah Vinson, objected and brought the case to a probate court.

The probate court ruled in September 1995 that Rose Wendland did not prove by "clear and convincing evidence" that Robert would have refused a feeding tube. However, the appeals court reversed that ruling, stating that evidence of Robert's wishes was not an issue to be decided by the court, only by the conservator.

The California Supreme Court has not yet scheduled a date for oral arguments, but briefs from both sides as well as several friends-of-the-court have been filed. The National Legal Center prepared an amicus brief, asserting that the appeals court ruling and the state statute on which the decision was based are "unconstitutional for failure to accord adequate due process to the rights of incompetent persons at stake in decisions to withhold/withdraw life-sustaining treatment from them." It asserts that the statute "renders the affected person's fundamental right to life entirely a function of the surrogate's subjective discretion."

Marzen warned that the Wendland case is only the latest step in the drive to expand the definitions of who can be denied medical treatment and what constitutes "extraordinary" care.

"The line so far has been limited to a ward who is permanently unconscious, in a persistent vegetative state, or terminally ill," he said. "Now proponents want to get rid of that line and move it to those who are incapable, such as Robert Wendland."

"In addition, if guardians are able to withdraw minimally burdensome forms of treatment such as feeding tubes, then why not antibiotics?" he continued. "Then anything could be withdrawn, as long as it's not needed for comfort care. Anyone concerned with the right to life of the disabled and of all people should be extremely concerned about these developments."

Wesley J. Smith, author of Culture of Death: The Assault on Medical Ethics in America, expressed his deep concern.

"The number of people dehydrated to death in hospitals and nursing homes has multiplied in recent years," he says "The practice was supposed to be restricted to people in a persistent unconscious condition but once it was accepted for people in a coma it quickly spread to conscious people who are dehydrated routinely in all fifty states, unless, as in the Robert Wendland case, a family member objects."

Smith noted the irony. "If you dehydrate a horse or a dog to death you could rightly go to jail for cruelty to animals," he said. "But do it to a cognitively disabled person because they require a feeding tube and it is called medical ethics."

Food and Fluids Withheld from North Carolina Woman for Three Days

By Liz Townsend

Unfortunately, Robert Wendland is not the only disabled person whose guardian is seeking to withdraw nutrition and hydration. Tina Cartrette, a 29-year-old North Carolina woman who suffers from cerebral palsy, was denied food and fluids for three days before the state's Governor's Advocacy Council for People with Disabilities intervened.

In a December 12 ruling, Mecklenburg County Superior Court clerk Mark Gott said that Cartrette's guardian, her mother Dianne Arnder, "potentially harmed" her daughter by ordering her life support removed, since she is not terminally ill. Gott cited North Carolina law, saying it does not allow a "deliberate act or omission to end life other than to permit the natural process of dying," the Charlotte Observer reported.

As Cartrette's new guardian, Gott appointed Don Austin, an employee of The Arc of North Carolina, an advocacy agency for disabled people. Tina Cartrette remains in the hospital in serious condition.

Cartrette, who is unable to walk or talk, has lived in nursing homes since she was five, according to the Observer. Her mother reportedly visited her only two or three times a year. According to the caregivers who worked with her every day, she could " recognize her name and track their movements with her eyes," the Observer reported. She was admitted to Carolinas Medical Center on November 8, suffering from a urinary tract infection, which caused a high fever and seizures.

Cartrette needed to breathe with the help a respirator because the seizure medication made respiration difficult. Doctors, reportedly in consultation with Arnder, decided that once the respirator was removed, no further life support - - including nutrition, hydration, and antibiotics - - would be given, the Observer reported. "Tina has been in and out of the hospital," Arnder testified in the court hearing. "I feel like her health is just going to keep deteriorating."

Doctors turned off the respirator November 24, and "darn it if she didn't keep breathing," Dr. Amie Nielsen testified. But they still decided to withdraw other forms of life support, and food and fluids were stopped November 26. Through the intervention of the Governor's Advocacy Council, Cartrette was fed again three days later by court order.

Advocates for the disabled strongly defended Tina Cartrette's right to live. "In Tina's case, people who have worked with her for most of her life feel that she leads a quality life and that her right to live supersedes any suffering she may have experienced," Julie Raburn, executive director of The Arc of Mecklenburg County, told the Observer.

Raburn added that many people with disabilities die because of decisions made by doctors and guardians that "are often based on the disability itself, on the perceived poor quality of life of the individual, or for economic reasons, rather than the medical condition."

Arnder has appealed the court clerk's decision, but a court date has not yet been set.