CHICAGO – 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 discontinue all forms of artificial life support.
But now there’s a catch for this churchgoing Catholic woman: U.S. bishops have decided that it is not permissible to remove a feeding tube from someone who is unconscious but not dying, except in a few circumstances.
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 previous church teachings, also appears to apply broadly to any patient with a chronic illness who has lost the ability to eat or drink, including victims of strokes and people with advanced dementia.
Catholic medical institutions are bound to honor the bishops’ directive, issued late last year, as they do church teachings on abortion and birth control. Officials 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 obligations?
Gaetjens, 65, said she did not know of the bishops’ position until recently and finds it difficult to accept.
“It seems very authoritarian,” said the Evanston, Ill., resident. “I believe people’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 persistent vegetative state for 15 years, without consciousness of her surroundings. 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 objections of her parents.
The directive’s goal is to respect human life, but some bioethicists are skeptical.
“I think many (people) will have difficulty understanding how prolonging the life of someone in a persistent or permanent vegetative state respects the patient’s dignity,” said Dr. Joel Frader, head of academic pediatrics at Children’s Memorial Hospital in Chicago and professor of medical humanities at Northwestern University’s Feinberg School of Medicine.
Gaetjens, a hospice volunteer and instructor at Northwestern University, has thought long and hard about illness and the meaning 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 advising 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 measures,” said the Rev. Tadeusz Pacholczyk, director 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 intervention but basic care, akin to keeping the patient clean and turning the person to prevent bedsores, Pacholczyk said.
Pope John Paul II articulated the principle in a 2004 speech, and the Congregation for the Doctrine of the Faith, an arm of the Vatican, expanded on it in a 2007 statement. The new guideline incorporates those positions in Directive 58 of the U.S. bishops’ Ethical and Religious Directives for Catholic Health Care Services.
There are several important exceptions. For one, if a person is actively dying of an underlying medical condition, such as advanced diabetes or cancer, inserting a feeding tube is not required.
“When a patient is drawing close to death from an underlying progressive and fatal condition, sometimes measures that provide artificial nutrition and hydration become excessively burdensome,” said Erica Laethem, a director of clinical ethics at Resurrection Health Care, Chicago’s largest Catholic health care system.
A second exception has to do with bodily discomfort. If infection develops repeatedly at the site of the feeding tube, for instance, artificial nutrition and hydration can be refused or discontinued, Catholic ethicists agree.
A third exception is allowed when inserting or maintaining a feeding tube becomes “excessively burdensome” for a patient. That would apply, for instance, if a person regurgitates the food and develops pneumonia when it enters the lungs, Grogan said.
Under traditional Catholic teachings, patients may refuse medical interventions 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 Association of the United States.
Although medical institutions are legally bound to respect patients’ advance directives, exceptions exist for providers who object by reason of conscience or religious belief.
The bishops’ guidelines specify that “advance directives are to be followed, so long as they do not contradict Catholic teachings,” said John Haas, president of the National Catholic Bioethics Center. How those teachings will be interpreted has yet to be resolved.