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 IPs 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 Hydrarion,"
  September 3, 2004).

Most of the significant concerns that many health-care workers and theologians have about the allocution would disappear it 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.

The members of the Consortium of Jesuit Bioethics Programs are Mark Aita, SJ; Debra Bennett-Woods; Peter Clark, SJ; James M. DuBois; Amy Haddad; Mark Kuczewski; Carol Taylor; and James J. Walter.