William E. May

The February 13 issue of Commonweal featured an article by the Consortium of Jesuit Bioethics Programs, “Undue Burden? The Vatican & Artificial Nutrition and Hydration.” The article needs to be challenged for some misleading statements and for erroneously attributing to Cardinal Justin Rigali and Bishop William E. Lori positions they do not hold.

The Consortium claims, with other theologians, that Pope John Paul II’s March 20, 2004, allocution on the use of artificial nutrition and hydration (ANH) for patients in a persistent vegetative state (PVS) contained assertions representing “a departure from long-standing Roman Catholic bioethical traditions.” To support this claim the Consortium appeals to the fourth edition (2001) of the U.S. Conference of Catholic Bishops’ Ethical and Religious Directives for Health-Care Services. Without identifying precisely the directives in question, the Consortium cites directive 57, which states that “a person may forgo extraordinary or disproportionate means of preserving life,” and defines such means as “those that in the patient’s judgment do not offer a reasonable hope of benefit or entail an excessive burden, or impose excessive expense on the family or the community.” But no assertions in the pope’s allocution deny what directive 57 affirms. In fact, John Paul II affirms that the use of ANH for persons in the alleged vegetative state is to be considered “in principle” as ordinary and proportionate and hence morally obligatory “insofar as and until it is seen to have attained its proper finality, which in the present case consists in providing nourishment to the patient and alleviation of his suffering.” In other words, the pope recognized that ANH can rightly be withheld if judged either ineffective or unduly burdensome.

It is useful, I believe, to provide the context for the March 20, 2004, papal address. It was given at the conclusion of the International Congress on “Life-Sustaining Treatments and Vegetative State: Scientific Advances and Ethical Dilemmas,” co-sponsored by the Pontifical Academy for Life and the International Federation of Catholic Medical Associations. It was based on the latest scientific studies regarding the diagnosis and condition of persons said to be in a “vegetative state.” These studies, as the International Federation noted, showed that modern imaging techniques, such as MRIs, provide some evidence that at least some individuals said to be in this state are capable of experiencing pain and of responding to their environment.

Later, an article in the October 15, 2007, New Yorker (“Silent Minds” by Jerome Groopman) cited the work of Adrian Owen, a neuroscientist at the hospital for Cambridge University, which corroborated this evidence. Groopman reported that Owen devised a test “to determine whether vegetative patients who seemed able to comprehend speech could also perform a complex mental task on command.” Owen asked them to imagine playing tennis. First, he took brain scans of thirty-four healthy volunteers who were asked to picture themselves playing a match for at least thirty seconds. “Their brains showed activity in a region of the cerebrum that would be stimulated in an actual match.” Then he repeated the experiment, this time “using one of the vegetative patients, a woman who had been severely injured in a car accident.” According to Groopman, “The woman had to be able to hear and understand Owen’s instructions, retrieve a memory of tennis...and focus her attention for at least thirty seconds.” To Owen’s astonishment, “Lo and behold, she produced a beautiful activation, indistinguishable from those of the group of normal volunteers.” Another vegetative patient—a man in his twenties who had previously played soccer—also passed the test when Owen asked him to imagine playing in a soccer match.

The 2001 ethical directive of the U.S. bishops that was explicitly concerned with the subject of John Paul II’s later, March 20, 2004, address—the care due to persons allegedly in the vegetative state—is directive 58. It reads as follows: “There should be a presupposition in favor of providing nutrition and hydration to all patients, including patients who require medically assisted nutrition and hydration, as long as this is of sufficient benefit to outweigh the burdens involved to the patient.” The position taken by John Paul II does not conflict with this directive of the bishops, but rather, as noted already, seems to be in harmony with it.

Moreover, the Consortium fails to call readers’ attention to a 1992 document published by the USCCB Committee for Pro-Life Activities, “Nutrition and Hydration: Moral and Pastoral Reflections.” There the Committee took a stand on providing ANH to persons alleged to be in the “vegetative state”—a stand that in many ways anticipated the words of John Paul II, who singled it out for praise at an ad limina visit of a group of U.S. bishops in 1998 (see Origins, October 15, 1998). Thus the pope’s March 20, 2004, address hardly presented novel teaching incompatible with the Catholic tradition.

The Consortium argues that while the pope insists that ANH for persons in the alleged vegetative state is not a medical treatment but simply ordinary care for such individuals, one must regard insertion of the feeding tube as a medical act. This is true, and the Australian Conference of Catholic Bishops, which wholeheartedly accepted the pope’s teaching, explicitly recognized this.

The Consortium also seems to ignore the fact that people in an allegedly vegetative state are initially able to swallow and can be spoon-fed. But to feed them this way is time-consuming and using an endoscopic gastrostomy (PEG tube) is much more convenient for caregivers. After being fed via a PEG tube, however, these patients’ ability to swallow becomes atrophied and they can no longer swallow.

The Consortium also raises the question of cost, declaring that “health-care literature from 2007-09 estimates the annual cost of caring for a PEG tube at home to range from $9,000 to $25,000.” This estimate concerns the total cost of caring for such patients, providing them with a room that is kept warm in winter and comfortable in summer, etc. But that is similar to the economic burden of caring for quadruple amputees and quadriplegics, and surely it is a burden that ought to be carried by the community. John Paul II was acutely aware of this problem, and encouraged the establishment of centers to help such patients and their families. Moreover, no one is held to the impossible, and it is possible to remove patients from high-priced institutions and care for them at home with the help of others. Health-care personnel with whom I have discussed the issue agree that patients alleged to be vegetative can frequently be cared for at home, if there is a caregiver present who can be assisted by a team of helpers, including visiting nurses, spiritual advisers, etc.

The Consortium also declares: “Perhaps of most concern to those who work with gravely ill persons is a recent article by Bishop William E. Lori and Cardinal Justin Rigali (America, October 13, 2008), arguing that not everything in the CDF’s ‘Responses’ applies solely to patients in a persistent vegetative state, and specifically that ANH should be offered to patients with chronic but stable debilitating conditions less extreme than PVS.” I have read the article by Lori and Rigali (“In Defense of Human Dignity”) several times. I found no argument of this kind, and no specific demand that ANH be offered to “patients with chronic but stable debilitating conditions less extreme than PVS.” I cannot understand why the Consortium attributes those views to these authors.

Consortium of Jesuit Bioethics Programs

We thank William E. May for his response to our article “Undue Burden?” in the February 13 Commonweal. His main criticisms reinforce key points that we were trying to make. First, we agree with May when he acknowledges that the use of tubes to administer artificial nutrition and hydration (ANH) is a form of medical treatment that should be subjected to traditional Catholic principles for moral decision making. May refers approvingly to the interpretation of John Paul II’s allocution offered by the Australian bishops. As they wrote:

The pope’s statement does not explore the question [of] whether artificial feeding involves a medical act or treatment with respect to insertion and monitoring of the feeding tube. While the act of feeding a person is not itself a medical act, the insertion of a tube, monitoring of the tube and patient, and prescription of the substances to be provided do involve a degree of medical and/or nursing expertise. To insert a feeding tube is a medical decision subject to the normal criteria for medical intervention (“Briefing Note on the Obligation to Provide Nutrition and Hydration,” September 3, 2004).

Most of the significant concerns that many health-care workers and theologians have about the allocution would disappear if interpreted in this manner. Such an interpretation means that the medical acts of inserting and maintaining a feeding tube are subject to the usual tests of proportionate and disproportionate means, including the consideration of a range of burdens to the patient and the patient’s family.

Second, we argued that each patient’s situation is unique, and that to generalize about patients with one diagnosis to patients with another one is not recommended. May discusses variation within the functioning of patients often vaguely labeled as being in a “persistent” vegetative state. In fact, medicine today would distinguish between patients in a “minimally conscious state” and patients in a “permanent vegetative state.” Much of what May says is true of patients in the former but not of those in the latter. One author of this reply (Mark Aita) is a physician who has cared for many patients in nursing homes who are in a permanent vegetative state. He concurs with the statement of the Multi-Society Task Force on PVS published in the New England Journal of Medicine that, although a swallowing reflex is initially present in most patients in a permanent vegetative state, there is “a lack of coordination in chewing and swallowing.” Again, we should make decisions based on the clinical realities of individual patients.

As for costs associated with caring for a patient in a permanent vegetative state, again we find some areas of agreement with May: for example, his statement that “no one is held to the impossible.” But we disagree with May’s challenge to our figures (ranging from $9,000 to $25,000 at home, and approximately $60,000 a year in a skilled-nursing facility) on the cost of care. Those figures were our best estimates following a literature review provided by the Drug Information and Evidence-Based Practice Center at Creighton University. The estimates are consistent with the experience of at least one member of our Consortium (James J. Walter), who serves in a subacute facility where patients in a permanent vegetative state are cared for, and where the annual cost of care is $50,000. May’s best-case scenario involves having someone stay at home with the patient, with the additional assistance of visiting nurses. The cost of this alone can be exorbitant for many, particularly if staying at home also means that a caregiver must quit her job, and even more so if the patient in the permanent vegetative state was a breadwinner.

Finally, we did accurately represent the views of Cardinal Rigali and Bishop Lori. However, because of a miscommunication in the editing process, the source of Rigali and Lori’s comments was misidentified. The actual reference is to an article they published in the May-June 2008 issue of Health Progress, in which they wrote:

...not everything in the CDF’s “Responses” applies solely to patients in a “vegetative state.” For example, the CDF’s first response states that “the administration of food and water even by artificial means is, in principle, an ordinary and proportionate means of preserving life.” Certainly this basic principle applies when patients have chronic but stable debilitating conditions that are less extreme than the “vegetative state.” As the CDF “Commentary” notes, helpless patients with conditions such as quadriplegia, mental illness, or Alzheimer’s disease also must not be deprived of basic care and “abandoned to die” because their long-term care may burden others.

Thus, we expressed concern that extending the application of the allocution—or, more precisely, some interpretations of the allocution—to patients with Alzheimer’s disease and other severely debilitating or terminal conditions would, in some cases, be inappropriate and possibly harmful.