Anne Starr
A 49-year-old California man is in danger of dying by starvation because he is not a useful member of society.
Robert Wendland, who lives in Lodi, is brain-damaged as the result of a vehicle accident in 1993. He cannot speak, feed himself or control his bowels. His doctors say he will never resume a normal life.
Robert spent 16 months in coma, from which he has made measurable progress. He can operate an electric wheelchair, write the first letter of his first name, kiss his mother’s hand and hold his own hand up to be kissed by her. He participates in bowling, an activity offered at the acute care facility where he lives. Last year, he was named Bowler of the Year. The solo drunken driving crash that damaged Robert also altered the lives of everyone around him. It divided his family and set off an ethics controversy that has been discussed on national television. Depending on the outcome, his case may have consequences for all disabled Americans.
After Robert awoke from the coma and it became clear that he was permanently damaged, his wife, Rose Wendland, decided to withhold food and water from him. One of Robert’s brothers agreed with Rose. They said he would never want to live a dependent life. But his mother and a sister pleaded for his life. They said death by starvation was wrong. Today, Robert is alive only because of the intervention of his mother and sister, who rely on Life Legal Defense Foundation for legal advice and financial assistance for the litigation which saved Robert’s life.
LLDF directors say that if Robert dies, other disabled people will die, too. His starvation would dramatically expand the description of who can be refused food or water, according to LLDF attorneys. Currently, a patient must be dying or in a “persistent vegetative state” before anybody can withhold food and water. Those who support the right to withhold food from Robert admit he is not vegetative or dying, but argue that he is so “cognitively disabled” that he should not live because he would not want to be completely dependent.
Robert’s 78-year-old mother visits him three or four times a week to let him know that she cares about him. And as long as LLDF helps her, she will stand between him and the powerful group that says he would be better off dead.
Among the forces aligned against her in the upcoming hearing before the state supreme court are the Alliance of Catholic Health Care, the California Healthcare Association, the California Medical Association, Catholic Healthcare West, Mercy Healthcare Sacramento, and the San Francisco Medical Society.
The Alliance of Catholic Health Care alone represents more than 65 Catholic and community-based affiliated hospitals and more than 40 home health, nursing, assisted living, hospice and low-income housing facilities in California. In addition, 43 individual bioethicists oppose Robert’s mother. Among them are professionals employed by the Kaiser Permanente and University of California systems.
Health care systems have a keen financial interest in the case, said LLDF Executive Director Dana Cody. If caregivers can legally refuse food to disabled people like Robert, they will be able to slash costs associated with long-term care.
Concern for Robert’s quality of life may be cited, but “the bottom line is money,” she indicated. Cody, an attorney, said the movement to starve Robert demands a legal response. “The law should be a restraint,” she said. “You don’t starve somebody to death because they are disabled. You don’t abandon vulnerable people. Robert’s body is functioning, and if he is fed he is going to live.” If those who seek Robert’s death prevail, future conservators would only have to show “good faith based on medical advice” when making a life-and-death decision. [See In re Conservatorship of Robert Wendland (2000) 78 Cal.App.4th 517.] “They would not even have to show that it was good medical advice,” Cody said.
The right thing to do, Cody said, is to care for the person who is vulnerable. Even a person seeking to end his own life should be helped, not encouraged to commit suicide. She cited two cases, Washington v. Glucksberg (117 S.Ct. 2258 (1997)) and Vacco v. Quill (117 S.Ct. 2293 (1997)), which said there is no constitutional right to die because in America, “it is traditional that we care for the weak and vulnerable.” [To read more about the cases, visit LLDF online at http://www.lldf.org and look for the section on U.S. Supreme Court rulings.—Ed.]
In contrast, the amicus brief filed in support of Rose declared that personal autonomy is more important than any other legal right. Personal autonomy includes the right to refuse medical treatment. In California, food and water are considered medical treatment. Those who agree with Rose argue that the right to refuse treatment, including food and water, is a constitutional right under the 14th Amendment of the U.S. Constitution and Art. I of the California Constitution.
Janie Siess, the attorney for Robert’s mother, points out that the state and federal constitutions also guarantee citizens the right to life, “though you don’t hear much about that anymore.”
The amicus brief also argues that Robert should die because he “is unable to think in the manner we conceive humans do, and his responses are simply a matter of rote responses to an outside stimulus, or rote execution of exceedingly simple tasks.” In reply, Siess points out that toddlers also engage in “rote responses” as they learn, that retarded people may only perform simple tasks, and that Alzheimer’s patients or mentally ill people may not think normally. After Robert’s accident, Rose and the couple’s three children hoped that he would wake up and resume life. His wife was named conservator, which gave her the power to make medical decisions for Robert. She decided to have a feeding tube inserted so that Robert could be nourished while he was comatose.
Since emerging from the long coma Robert has progressed. However, doctors said he will remain dependent because he was so disabled by the brain injury. With hope for a full recovery gone, his wife said that Robert would not want to live a dependent life. If Robert could eat normally, the choice to eat or not would be his. Because he cannot make the decision independently, the responsibility falls to his conservator, Rose. It is unknown whether Robert could re-learn swallowing, according to Siess. That is because Robert’s wife stopped rehabilitation therapies when it became obvious he would not fully recover, Siess said. Robert is being cared for, and the feeding tube remains in his body, but there is no therapy to encourage further progress. The amicus brief supporting Robert’s right to die by starvation describes his lack of progress since rehabilitation ended, but it is silent in regard to why therapy was halted.
Rose Wendland based her decision to withhold food on comments Robert had made before the accident. When a relative was in declining health and had to be cared for, Robert told Rose that he would never want to be in such a dependent position. However, like most people his age, Robert did not have a written directive for health care or a living will. Lacking such a document, Rose appealed to the hospital’s ethics board. They agreed with her that food and water should be stopped.
Robert would have died by starvation shortly thereafter, except that an anonymous caller— presumably a hospital worker—alerted Robert’s mother and sister. With LLDF’s help, they secured a court injunction to temporarily halt the starvation plan. Because of the controversy, a separate attorney was appointed to represent Robert. His attorney agreed with Rose and the hospital that food and water could ethically be withdrawn. That leaves Robert’s mother positioned against her daughter-in-law, the court-appointed attorney for her son, huge corporate health care systems and 43 sophisticated bioethicists.
While the case winds its way through California’s courts (the next stop is the California supreme court), Robert continues to live his dependent life. He uses a wheelchair, steering it with a joystick. He can write the letter “R” and responds to his mother when she visits three or four times a week, traveling from Stockton on a bus. He kisses her hand, and, when asked, holds his own hand up to be kissed, his mother told her attorney. Robert bowls in a recreation area of the care facility, and has his 1999 Bowler of the Year trophy on display in his room. He is a Medi-Cal patient, and his mother tells Siess that the staff gives him good care.
His life is not rosy, but it is a life, Siess said. Papers filed by those who say Robert should die mention no progress, but point out his many deficits. If Robert dies with the permission of the courts and the support of major health care systems, others who are “cognitively disabled” will also be at risk, Siess says. People will die not because they directed the move themselves, but because grief-stricken, frustrated, disappointed or even greedy relatives want them to die sooner rather than later. More ominous, even disabled people with unified, protective families could be denied care by hospital officials who weigh cost against benefit and decide to save money.
In a move related to, but outside, the legal case, Life Legal attorney Katie Short wrote in November to several Roman Catholic bishops and archbishops in California. She sought clarification of the church’s stand on the issue of withdrawing food and water from a disabled person. Within the church, bishops have some influence over Catholic institutions, such as the hospitals that support Rose’s position, Short said. At press time, Short had not yet received a response from the religious leaders.
At the LLDF office in Napa, staff member Mary Riley said that fund-raising continues in the case, but at a slow pace. While grateful to those who have supported Robert’s case, Riley said that many potential donors seem to find end-of-life cases upsetting. People naturally fear the thought of disability, she said. Simple denial makes fundraising difficult, yet anyone who might someday be less than perfectly healthy should have a strong personal interest in the case, she said.
Siess said that Florence Wendland is extremely grateful for LLDF’s help. LLDF has paid filing fees, printing costs and other expenses associated with the case, which may eventually make its way to the Supreme Court of the State of California, and perhaps even to the U.S. Supreme Court. Robert’s mother knows that without the generosity of donors, her son would be dead. Siess said Mrs. Wendland is thankful to those who have helped save her son, imperfect though he may be. She asked also that LLDF supporters pray for Robert.