Issue link: https://www.epageflip.net/i/6907
CHICAGO (MCT) —If ever Carol Gaetjens becomes unconscious with no hope of awakening, even if she could live for years in that state, she says she wants her loved ones to dis- continue all forms of artifi- cial life support. But now there's a catch for this churchgoing Catholic woman. U.S. bish- ops have decided that it is not permissible to remove a feeding tube from someone who is unconscious but not dying, except in a few cir- cumstances. People in a persistent vegetative state, the bishops say, must be given food and water indefinitely by natural or artificial means as long as they are otherwise healthy. The new directive, which is more definitive than previ- ous church teachings, also appears to apply broadly to any patient with a chronic illness who has lost the abil- ity to eat or drink, including victims of strokes and peo- ple with advanced demen- tia. Catholic medical institu- tions are bound to honor the bishops' directive, issued late last year, as they do church teachings on abor- tion and birth control. Offi- cials are weighing how to interpret the guideline in various circumstances. What happens, for example, if a patient's advance directive, which expresses that individual's end-of-life wishes, conflicts with a Catholic medical center's religious obliga- tions? Gaetjens, 65, said she did not know of the bishops' position until recently and finds it difficult to accept. "It seems very authori- tarian," said the Evanston, Ill., resident. "I believe peo- ple's autonomy to make decisions about their own health care should be respected." The guideline addresses the cases of people like Terri Schiavo, a Catholic woman who lived in a per- sistent vegetative state for 15 years, without con- sciousness of her surround- ings. In a case that inspired a national uproar, Schiavo died five years ago, after her husband won a court battle to have her feeding tube removed, over the objec- tions of her parents. The directive's goal is to respect human life, but some bioethicists are skepti- cal. "I think many (people) will have difficulty under- standing how prolonging the life of someone in a per- sistent or permanent vegeta- tive state respects the patient's dignity," said Dr. Joel Frader, head of acade- mic pediatrics at Children's Memorial Hospital in Chicago and professor of medical humanities at Northwestern University's Feinberg School of Medi- cine. Gaetjens, a hospice vol- unteer and instructor at Northwestern University, has thought long and hard about illness and the mean- ing of life after struggling with multiple sclerosis for 40 years. She said she has told her sister and a close friend that she does not want "heroic measures" undertaken on her behalf at the end of life. But she acknowledged that she has not studied Catholic teachings on the subject or thought through all the implications of her position. "My pleasure is in being part of the human race," she said. "If that's gone, if I can't interact with other people, even if they could give me nutrition and keep me hydrated, I'm not interested in being preserved." Some experts are advis- ing that a similar stance is no longer tenable for devout Catholics. Church members should steer away from advance directives that make blanket statements such as "I don't want any tubes or lifesaving mea- sures," said the Rev. Tadeusz Pacholczyk, direc- tor of education for the National Catholic Bioethics Center in Philadelphia. The church's view is that giving food and water to a person through a feeding tube is not a medical inter- vention but basic care, akin to keeping the patient clean and turning him to prevent bedsores, Pacholczyk said. Pope John Paul II articu- lated the principle in a 2004 speech, and the Congrega- tion for the Doctrine of the Faith, an arm of the Vatican, expanded on it in a 2007 statement. The new guide- line incorporates those posi- tions in Directive 58 of the U.S. bishops' Ethical and Religious Directives for Catholic Health Care Ser- vices. There are several impor- tant exceptions. For one, if a person is actively dying of an underlying medical con- dition, such as advanced diabetes or cancer, inserting a feeding tube is not required. "When a patient is draw- ing close to death from an underlying progressive and fatal condition, sometimes measures that provide artifi- cial nutrition and hydration become excessively burden- some," said Erica Laethem, a director of clinical ethics at Resurrection Health Care, Chicago's largest Catholic health care system. Some ethicists are inter- preting that exception strict- ly. The Rev. William Gro- gan, a key health care advis- er to Cardinal Francis George and an ethicist at Provena Health, based in Mokena, Ill., said death must be expected in no more than two weeks _ about the time it would take someone deprived of food and water to die. But Joseph Piccione, senior vice president of mis- sion and ethics at OSF Health Care in Peoria, Ill., said that if a patient knows she is dying of, say, incur- able metastasized ovarian cancer but is several months from death, she can decline to have a feeding tube inserted if she anticipates significant physical or emo- tional distress from doing so. A second exception has to do with bodily discom- fort. If infection develops repeatedly at the site of the feeding tube, for instance, artificial nutrition and hydration can be refused or discontinued, Catholic ethi- cists agree. A third exception is allowed when inserting or maintaining a feeding tube becomes "excessively bur- densome" for a patient. That would apply, for instance, if a person regurgitates the food and develops pneumo- nia when it enters the lungs, Grogan said. Under traditional Catholic teachings, patients may refuse medical inter- ventions when anticipated burdens outweigh potential benefits. "Decisions are made case by case," and that will continue, said Ron Hamel, senior director of ethics at the Catholic Health Associ- ation of the United States. Of particular concern is whether Catholic medical centers will honor an advance directive stating broadly that a person does not want a feeding tube inserted. Compassion & Choices, a group that supports the right of dying people to end their lives, suggested the potential for conflict is sig- nificant. "Now, (Catholic) hospi- tals and nursing homes have no choice but to enforce Catholic doctrine universal- ly over patient wishes," the group's president, Barbara Coombs Lee, wrote on her blog. But most ethicists said they do not see a significant problem. Disagreements, they say, usually can be resolved by discussing peo- ple's end-of-life concerns, such as fear of being aban- doned, fear of living in pain or fear of becoming entirely dependent on others. It is rare for people to be very specific about their wishes. "I have never seen an advance directive that says, 'If I am in a persistent vege- tative state, I ask that you withdraw food and water,' " Laethem said. "We will be very atten- tive to patients' advance- care planning," Piccione said. That offers some solace to people like Jim Lind- holm, 69, who is struggling with a recurrence of non- Hodgkin's lymphoma and attends St. Nicholas Catholic Church in Evanston. "If there is no hope of recovery for me, if I've lost my active mental life, I don't see any reason to keep my body alive," he said. "I would prefer to die a peace- ful death." Lindholm speaks from deep personal experience. A dozen years ago, his father suffered a stroke and lost the ability to feed himself and speak for himself. Attempts to feed him by hand did not succeed. His advance directive was clear: no extraordinary measures. The doctors offered a feeding tube; Lindholm's mother said, "My husband wouldn't want that," so Lindholm's dad died of lack of food and water. Lindholm still struggles with it. Did his father really want to starve to death? If his mother had agreed to the feeding tube, how long might he have lived? "We owe it to those who survive us to make it very, very clear what we mean by 'do not resuscitate,' " Lind- holm said. Although medical insti- tutions are legally bound to respect patients' advance directives, exceptions exist for providers who object by reason of conscience or reli- gious belief, said Charles Sabatino, head of the Amer- ican Bar Association's Commission on Law and Aging. The bishops' guidelines specify that "advance direc- tives are to be followed, so long as they do not contra- dict Catholic teachings," said John Haas, president of the National Catholic Bioethics Center. How those teachings will be interpreted has yet to be resolved. 4A – Daily News – Tuesday, February 16, 2010 750 David Avenue, Red Bluff • 527-9193 E Q U A L H O U S I N G OPPORTUNITY TEHAMA ESTATES PROVIDES: ◆ Independent Living ◆ Private Apartments ◆ Three Nutritious Meals Daily ◆ 24 Hour Secure Environment ◆ House Keeping Services ◆ Warm & Friendly Staff ◆ Recreational Programs ◆ Scheduled Transportation ◆ Private & Formal Dining Rooms A Retirement Community for the Active Senior Citizens The Gold Exchange M-F 10am-5:30 pm Sat. 11 am-4 pm Affordable Gifts for all Occasions 528-8000 413 Walnut St., Red Bluff on GUITARS 40% off for the month of February F F r r u u i i t t HAPPY VALLEY NURSERY Trees, Shrubs, Perennials, Design & Installation 6876 Happy Valley Rd. 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Medically assisted nutrition and hydration become morally optional when they cannot reasonably be expected to pro- long life or when they would be 'excessively burdensome for the patient or (would) cause significant physical discomfort.' " Q: Is this an entirely new position? A: An earlier version of the directive, published in 2001, spoke of a "presumption" in favor of giving food and water to patients in a vegetative state; the new version speaks of an "obligation" to do so and appears to extend to patients with other chronic conditions. Precedent for the position comes from a 2004 statement from Pope John Paul II and a 2007 statement from an important advisory group at the Vatican. Q: What inspired the change? A: Church leaders oppose assisted suicide and euthanasia and wanted to affirm strongly that the lives of severely disabled people have value. Q. Does it apply to Catholics only? A: The guideline affects all patients who seek care at Catholic medical centers, regardless of their religion, said Stan Kedzior, director of mission integration at Alexian Brothers Health System. Q: Who decides if a feeding tube is "excessively burdensome" and therefore not warranted? A: That's up to the patient, but it isn't as simple as, "I don't like it and I don't want it." There have to be discernible physical, emo- tional or financial hardships for the patient, according to Joseph Piccione of OSF Health Care. Those hardships must outweigh the potential benefits. Q: Does this mean Catholics must pursue all medical interven- tions at the end of life? A: "No. We mustn't all die with tubes," said John Haas of the National Catholic Bioethics Center. "The Catholic Church has never taken that position." Church members may refuse interventions they deem excessively burdensome. For instance, someone with advanced kidney failure is not obligated to pursue dialysis, said the Rev. William Grogan, a health care adviser to Cardinal Francis George. Someone who has lost the ability to breathe is not required to use a ventilator.