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Neurology Today:
doi: 10.1097/01.NT.0000383490.70944.c8
Article

Should Feeding Tubes Always Be Continued in Terminal Illness? Not Necessarily, According to New Guidance from the Catholic Church

BUTCHER, LOLA

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ARTICLE IN BRIEF

Bioethicists highlight those aspects of a revised directive on artificial nutrition and nutrition from the Catholic Church that would apply to neurologists working in Catholic hospitals.

Although a recent revision to the US Conference of Catholic Bishops' instructions to Catholic hospitals underscores the church's insistence on the use of medically assisted nutrition and hydration (ANH), neurologists should not assume ANH is required in all cases.

“The Catholic church is not teaching that everybody has to die with a feeding tube and neurologists really need to know that,” said Daniel P. Sulmasy, MD, PhD, a Franciscan friar and associate director of the MacLean Center for Clinical Medical Ethics at the University of Chicago.

The revision to Directive 58 of the Ethical and Religious Directives for Catholic Health Care Services says there is a general moral obligation to provide patients with nutrition and hydration if it would prolong their lives, but there are exceptions to that obligation.

Dan Larriviere, MD, JD, chair of the AAN Ethics, Law and Humanities Committee, said he expects very few patients to be affected by the revision, but the change does reminds neurologists and other caregivers that religious doctrine can be brought to bear in certain medical situations.

“There may be cases in which the theological doctrines conflict with patient wishes and state law,” said Dr. Larriviere, assistant professor of neurology at the University of Virginia. “And in those circumstances, it's going to require a lot of discussions between the physicians and the patients' families about how to resolve that.”

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HISTORY OF THE ISSUE

Historically, the official position of the Catholic Church has stressed the difference between ordinary and extraordinary means of life support.

“The distinction was that the church teaching required that ordinary treatment be continued, but extraordinary treatment was optional,” said James L. Bernat, MD, a bioethicist and neurologist at Dartmouth-Hitchcock Medical Center. “Most commentators thought that treating a person in an irreversible vegetative state counted as the extraordinary.”

In 2004, Pope John Paul II in 2004 issued a statement saying that artificial feeding tubes for patients in a vegetative state should not be considered a medical act and therefore, their use represents a natural means of preserving life. That surprised some Roman Catholic physician experts, Dr. Bernat said, because it appeared to depart from previous church teachings.

The US bishops sought a clarification on the matter and, in 2007, the Congregation for the Doctrine of the Faith issued its response. That prompted discussions among Catholic theologians and the Catholic health care community, Dr. Sulmasy said, culminating in a revision to Directive 58 that was published in November 2009.

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IMPLICATION FOR NEUROLOGISTS

The revised Directive 58 says that to comply with the church's moral teachings, a Catholic health care facility has an obligation to provide artificial nutrition and hydration for patients who cannot take food and water orally. However, ANH becomes “morally optional” if they would not prolong a patient's life or they are excessively burdensome or cause significant physical discomfort to the patient.

“In the actual circumstances facing a given patient, medically assisted nutrition and hydration might not be appropriate. However, Pope John Paul II in his 2004 address, and the Congregation for the Doctrine of the Faith in its 2007 doctrinal statement, both insist that the belief that a patient is never likely to regain consciousness is not in itself a sufficient reason for withdrawing medically assisted nutrition and hydration,” according to an assessment of the revision published in the Jan-Feb. 2010 Health Progress, a journal of the Catholic Health Association of the United States. The assessment was written by Ron Hamel, PhD, and Friar Thomas Nairn, both senior directors of ethics at the Catholic Health Association (CHA).

If conflicts arise between church doctrine and a patient's advance directive regarding ANH'or state laws, which universally uphold advance directives'a neurologist working at a Catholic hospital may be responsible for helping decide how to proceed.

“Those conflicts will have to be resolved, and there's no magic formula for resolving them,” Dr. Larriviere said. “One solution might be to transfer the patient to a different institution.”

Dr. Bernat said Directive 58 would not affect most neurologic patients. “Certainly it would remove all terminally patients who can't eat because they're not expected to live indefinitely,” he said. “It would eliminate all of the patients with advanced dementia, for whom there's been no evidence that a feeding tube makes them live longer or healthier.”

Dr. Sulmasy said patients with progressive illnesses like Alzheimer disease, Parkinson disease, and amyotrophic lateral sclerosis are unlikely to be affected by the directive. “Under those circumstances, the revision suggests that if the feeding tube would be burdensome, or of little benefit, or is not determined to be able to, in a meaningful way, prolong the life of those persons, then it can be discontinued and considered an extraordinary means of care,” he said.

Both Dr. Bernat and Dr. Sulmasy said the most likely patients to be affected by the directive would be patients in a persistent vegetative state (PVS) who are otherwise healthy and being treated at a Catholic hospital. The Health Progress article points out that no hospital or physician, including a Catholic hospital or physician, may insert a feeding tube in a non-emergency situation without the permission of the patient or his or her surrogate. Discontinuing ANH, however, may pose a dilemma.

“If (PVS patients) have no apparent complications of feedings, no bed sores, no recurrent pneumonia, and they're doing quite well, it will be difficult in that setting to justify stopping a feeding tube,” Dr. Sulmasy said.

In those situations, a conflict arises only if a patient's advance directive calls for no ANH or the patient's family requests the removal or discontinued use of the feeding tube. State laws unanimously say that a patient's advance directives regarding ANH must be honored.

The AAN position statement regarding life-sustaining treatment, including ANH, for patients who cannot make their own decisions is confined to laws and regulations and does not address religious doctrine. The position, published in 2006, is that ANH for patients in a PVS may be withdrawn if that would be consistent with the patient's wishes. However, the Academy does not say that that ANH must be withdrawn for all patients in PVS.

Writing in Health Progress, the CHA ethicists said that in the vast majority of cases, patients' advance directives will be honored, and that the directive, in and of itself, does not appear to conflict with federal or state laws. “Whether the application of Directive 58 will conflict with a given state law depends on the circumstances of each individual case,” the authors said.

Dr. Sulmasy recalls that John Paul II, who suffered from Parkinson disease, removed his own feeding tube near the end of his life. “That ought to be a perfectly clear example to everybody that the Catholic church is not teaching, contrary to what some people have said, that everybody must die with a feeding tube,” he said.

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REFERENCES

• Hamel R, Nairn T. The new directive 58: What does it mean? Health Progress 2010; Jan-Feb. 2010;70–72.
• Bacon D, Williams MA, Gordon J. Position statement on laws and regulations concerning life-sustaining treatment, including artificial nutrition and hydration, for patients lacking decision-making capacity. Neurology 2007;68:1097–1100.

©2010 American Academy of Neurology

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