Supporters of an amendment to the ethical directives for the nation’s 624 Roman Catholic hospitals are trying to counter fears that the new change will cause greater numbers of brain-damaged patients to receive costly and unpopular care through the prolonged use of feeding and hydration tubes.
Caught in the middle
End-of-life care at issue with new Catholic directives
However, some observers say the new rule, approved by the United States Conference of Catholic Bishops in Baltimore on Nov. 17, forces the hospitals to maneuver through the widening gap between secular and religious norms involving the ethical use of indefinite life support for patients in persistent vegetative states.
Last week’s amendment has its roots in a 2004 statement from Pope John Paul II, in which the pontiff declared that Roman Catholic healthcare providers have an obligation to provide patients in persistent vegetative states with food and water if they can reasonably be expected to live indefinitely given such care. The pope’s comment came amid the national debate over the fate of Terri Schiavo, the Florida woman who died in 2005 following a bitter legal dispute among family members over whether to end her 15 years on life support.
The pope’s comments set off a cascade of differing interpretations in the medical and theological communities, prompting the bishops to amend the ethical and religious directives to precisely interpret the pope’s teaching. The updated directive now states that such care is obligatory, except in cases where life support is not reasonably expected to prolong life, or when it would become “excessively burdensome” to the patient.
Sister Carol Keehan, executive director of the Catholic Health Association, said the amendment was made after substantial input from clinicians who sought a clearer understanding of the rules. “We feel like there is simply no change, but it is a little bit more clearly articulated,” Keehan said. “From our perspective, the distinction between the patient in a persistent vegetative state and the dying patient was a very important distinction.”
Essentially, the rule now says that a dying patient should not be given food or drink, because the natural process of dying involves stopping eating and drinking. However, hospitals have an obligation to provide patients in persistent vegetative states with life support because “even the most severely debilitated patient retains the full dignity of the human person,” the directive says.
Critics have recently accused hospital administrators of not offering all the life support they could, because patients in persistent vegetative states were not as profitable as others.
John Shea, a Roman Catholic and radiologist who writes about ethical issues and volunteers for the Toronto Right to Life Association, said he’s heard such patients are referred to crudely as “bed blockers.”
“People become chronically debilitated for a long period of time, and they cost of lot of money. The hospitals are in bad shape financially, and they’re trying to save money,” Shea said. “Feeding and hydration are so basic that the argument that it’s too expensive shouldn’t exist.”
Not so, say medical ethicists in La Crosse, Wis.
La Crosse is a two-hospital city of 50,000 people that is nationally known for having one of the lowest rates of hospitalization in the last two years of life, according to the Dartmouth Atlas of Health Care.
Bud Hammes, the director of medical humanities at La Crosse’s secular Gundersen Lutheran Health System, said the 20-year effort toward widespread use of advance directives for end-of-life care has shown him that the use of feeding and hydration tubes for patients in persistent vegetative states is widely unpopular among people who make advance directives for their end-of-life care—and that’s partly because of the cost.
“Keeping someone alive on a feeding tube in a persistent vegetative state will be a huge financial burden on families, because eventually their insurance will run out, and they will have to pay the cost themselves,” Hammes said. “There are many Catholics that I know who would say that in their opinion, the expense of keeping them alive on a feeding tube in a persistent vegetative state is not morally acceptable.”
So what happens when Catholic moral teaching conflicts with a hospital patient’s wishes? “Then I would say that we would align with what the patient has requested,” said Nickijo Hager, vice president for mission and organizational effectiveness at La Crosse’s Roman Catholic system, Franciscan Skemp Healthcare.
However, she said the likelihood of such a conflict seemed remote since the directives specifically tell providers that the obligation becomes optional if treatment is “excessively burdensome” on the patient, which includes financial burdens. “The only person who can decide what is burdensome is the patient,” Hager said.
Keehan had a different view, saying her interpretation is that the financial impacts pondered in the directives were more applicable to situations in which family members must decide whether they have a moral obligation to pay for a costly experimental procedure for a severely ill patient.
Paul Danello, a healthcare attorney with Baker & Daniels who has expertise in Catholic canon law, said the gap between personal health choices and Catholic moral teaching is growing as both sides sharpen the lines of the debate, leaving Catholic hospitals sitting in between. On one hand, community hospitals that receive Medicare or other federal funding are coming under greater pressure in Washington to provide whatever services a patient demands, Danello said. At the same time, American Catholic bishops are increasingly rejecting the idea that cost pressures should have any bearing on moral issues involving “the supreme value of human life.”
“It’s a chasm that’s opening here,” Danello said. “The refinement of the moral norm is fine and necessary … but the larger unfinished task here is how that coordinates with civil laws, which exist in the states or what might come out of healthcare reform” on the federal level.
One solution to the issue was offered by John Haas, president of the National Catholic Bioethics Center and consultant to the U.S. bishop’s Committee on Pro-Life Activities, which helped draft the new directive along with other groups. He said that if attempts to resolve a conflict over a feeding tube by talking through the issue failed, the patient or their legal guardian are free to seek care elsewhere.
“The guardian might say, ‘We want our relative treated in this way, and we want out discharge papers,’ ” Haas said. “They would make arrangements for you” because the patient or their legal guardian are “who determines where they will receive care.”
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