What's Extraordinary?: Catholic wisdom on end-of-life care
A number of high-profile legal cases since the 1980s have involved persons receiving medically assisted nutrition and hydration (food and water): Claire Conroy, Paul Brophy, Nancy Cruzan, Hugh Finn and Terri Schiavo. The provision of nutrition and hydration through various medical interventions, generally described as “tube feeding,” is one of the most complex and controversial issues in contemporary bioethics.
Such relatively common legal and moral debates are concerned with persons who are in a persistent vegetative state. While some brain functions, like wake/sleep cycles and spontaneous/automatic reflex actions of the nervous system may continue, all detectible activity of their neocortex has stopped. A diagnosis of PVS means that the doctor sees virtually no prospect for the patient’s recovery.
Nutrition and hydration can be provided by medical means, which are sometimes wrongly called “artificial.” A tube, for example, can be inserted through the nose and into the stomach, a method usually employed for short-term use. Other tube-feeding methods require surgery. A tube can be passed through an incision in the abdominal wall and into the stomach, for example, or through the abdomen into a portion of the small intestine. In such cases, feeding tubes and incisions need consistent monitoring.
To make an informed decision about the use of tube feeding, one must consider several factors, like a patient’s diagnosis, prognosis and current condition, as well as any complicating factors like the presence of renal failure and pneumonia. A number of relevant questions also should be asked: What medical method is best suited for this person and for how long? What are the benefits and burdens of various methods? What are their side effects? In short, there is no single or simple answer to the questions surrounding tube feeding.
In the past several decades, more than 40 courts in the United States have addressed medically assisted nutrition and hydration. As a result, there is a virtually universal legal consensus that tube feeding is a medical treatment that may, depending on the result of a careful decision-making process, be withheld or withdrawn. Less unanimity, however, exists in the medical and moral fields. Clinicians agree that withholding or withdrawing a feeding tube is appropriate when 1) it is medically futile—that is, does not provide effective nutritional support or prevent dehydration; 2) the patient would experience no real benefit; 3) the burdens for the patient outweigh the benefits; and 4) the patient is dying.
Given this complex history, it is not surprising that within the Catholic tradition a number of theologians, ethicists and groups of bishops have come to different conclusions regarding the use of tube feeding. The pivotal question for them has been: Is tube feeding a medical intervention—not just basic care—that can be morally evaluated using the traditional distinction between ordinary and extraordinary means of care? Other questions further complicate the issue: Can a persistent vegetative state be diagnosed with certitude? How does one determine the quality of life of a patient in this state?
What the Church Teaches
In March 2004 an International Congress took place in Rome with the title Life-Sustaining Treatments and the Vegetative State: Scientific Progress and Ethical Dilemmas. There Pope John Paul II delivered an allocution that encouraged scientists and researchers to find ways to diagnose PVS more accurately. He referred to studies showing that up to 43 percent of patients were misdiagnosed and to cases of patient recovery after a period of time with sustained rehabilitative efforts. He also acknowledged that recovery is more difficult the longer the condition of the vegetative state remains.
The papal allocution strongly reaffirms the intrinsic worth and the personal dignity of every person, including those in the PVS, and insists on their right to basic health care, particularly nutrition and hydration, hygiene, a comfortable environment and the prevention of complications resulting from bed confinement. In other words, such patients retain their moral claim to basic health care.
John Paul II’s allocution also underscores that the administration of food and water—even when given by medical means, including feeding tubes—is a natural way of conserving life. The use of medically assisted nutrition and hydration, it said, should be presumed “in principle.” Clear medical reasons are to be given in each particular case to demonstrate why such assistance is not morally obligatory.
The moral obligation to provide medically assisted nutrition and hydration, then, is conditioned by medical efficacy. Do the means used achieve the proper goal, which is to nourish the patient and alleviate suffering? When it is medically demonstrable that these goals are not being achieved, however, the moral obligation to use tube feeding ceases.
While the giving of nutrition and hydration is considered ordinary care even when medically administered, its use is bound by the church’s traditional discernment of ordinary/proportionate and extraordinary/disproportionate means (see Declaration on Euthanasia, 1980).
The pope’s allocution underscores the following key points: 1) All human persons, regardless of their state of development or decline, possess an inviolable dignity; 2) Every person has a right to receive ordinary health care to preserve life and alleviate suffering; 3) The decision regarding the use of medically assisted nutrition and hydration must be based on the actual medical condition of the patient; and 4) An exception can be made if tube feeding is determined to be disproportionate or medically futile, in which case the intervention may be withheld or withdrawn. In all cases the patient is to remain the subject of care, comfort and love. The Congregation for the Doctrine of the Faith reaffirmed these teachings of John Paul II in 2007.
In the United States, the guiding principles for Catholic health care facilities and services are contained in the Ethical and Religious Directives for Catholic Health Care Services, issued by the U.S. Conference of Catholic Bishops. From time to time, these directives are revised in light of official church teaching or to include new or updated directives that address medical and moral concerns. The directives currently in use (the fifth edition) were approved and published in 1995 and have been revised twice since then.
The latest revision concerns Directive 58, which the bishops approved on Nov. 17, 2009, to incorporate both the teaching of John Paul II in 2004 and its affirmation by the Congregation for the Doctrine of the Faith three years later. A news release issued by the Catholic Health Association on Nov. 18 explained: “The revised Directive does not offer new teaching but rather reflects existing Church teaching which Catholic health care facilities have already incorporated into their practice.”
In conformity with the papal allocution, the revised Directive 58 makes the following points: 1) In principle there is a general moral obligation to provide patients with food and water, including medically administered nutrition and hydration for those who are unable to take food orally, even if assisted; 2) This moral obligation extends to patients in a persistent vegetative state because of their innate human dignity; 3) This moral obligation ceases or becomes “morally optional” when tube feeding becomes excessively burdensome or no longer accomplishes its objective—that is, when medically administered food and water are no longer being assimilated by the patient; 4) It is necessary to distinguish between patients in a chronic state, like PVS, and patients who are dying.
Accordingly, the revised introduction to Part Five of the E.R.D.’s, which includes Directive 58, states, “While medically assisted nutrition and hydration are not morally obligatory in certain cases, these forms of basic care should in principle be provided to all patients who need them, including patients diagnosed as being in a ‘persistent vegetative state,’ because even the most severely debilitated and helpless patient retains the full dignity of a human person and must receive ordinary and proportionate care.”
Spread of Misinformation
Despite repeated, official attempts to clarify Catholic teaching on the use of medically assisted nutrition and hydration, false and misleading information about the revision of Directive 58 persists.
One journalist who specializes in health care asserted (modernhealthcare.com, 11/17/09) that Catholic hospitals must now insert and maintain nutrition and hydration tubes, and that all PVS patients must be given medically assisted nutrition and hydration except those close to inevitable death from underlying conditions. This assertion is incorrect. The church’s teaching is not that every PVS patient or patient with a chronic condition must be maintained on feeding tubes until diagnosed as dying.
Rather, by use of the phrase “in principle” in the papal allocution, in the C.D.F. response and in the Ethical and Religious Directives, the church acknowledges that tube feeding may become medically futile for a patient. The C.D.F. laid out several clear examples: settings in which tube feeding is not available, as in a remote place or in a situation of poverty; when complications emerge so that a patient is no longer assimilating the nourishment; or when such assistance causes a patient significant physical discomfort.
A misinterpretation of the church’s teaching can be and already has been adopted by other groups that espouse purposes contrary to Catholic teaching. The organization Compassion and Choices, for example, a leading force behind efforts to legalize assisted suicide, has misrepresented the revision of Directive 58. A regular writer on their Web site, Barbara Coombs Lee, claims (wrongly) that Catholic health care institutions will no longer honor patients’ advance directives and that patients in a persistent vegetative state will be force-fed against their will (see compassionandchoices.org/blog/?cat=27). She states falsely that by removing all flexibility to respect the wishes of a patient or family, the revised directive creates an obligation to provide patients medically assisted nutrition and hydration in all circumstances, and that the new guidelines allow no consideration of the burden to the patient. These assertions are absurd.
In fact Directives 24 and 25 support such advance directives as a durable power of attorney for health care. One can even indicate in one’s advance directive that medically assisted nutrition and hydration is not to be administered because of one’s “psychological dread” of tube feeding. Psychological dread is one of the accepted and traditional moral categories that can constitute extraordinary or disproportionate means (see “A History of Extraordinary Means,” Ethics and Medics, September and November 2006). Reasonable persons might regard tube feeding as excessively burdensome because it causes them great dread (vehemens horror).
Directive 24 cautions that a Catholic health institution “will not honor an advance directive that is contrary to Catholic teaching.” In light of the revised Directive 58, an example of such an advance directive would be that of a person who does not want tube feeding if diagnosed as in a permanent vegetative state for the reason that such a patient has lost all human dignity and is dying. This reasoning runs counter to Catholic teaching, since PVS patients have an intrinsic dignity that demands equality of health care. One could think of other such examples. The bottom line is that a diagnosis of unconsciousness or of PVS can never in itself be the basis for withholding or withdrawing health care that would be given to others who are not in such a state.