Medically Assisted Nutrition and Hydration in Medicine and Moral Theology (2004)

John R Berkman

Despite the expansive literature detailing various arguments for or against the use of MANH in caring for the dying and debilitated, the thesis of this paper is that a large part, if not the main thrust, of the debates over MANH have been inadequate and misguided on a number of different levels. The paper hopes to reorient and redirect the debate by attending to the medical history of MANH (part one) and recent medical developments with regard to MANH (part five), examining and contextualizing the earliest debate (i.e. in the 1950s) over MANH among moral theologians (part two), a more recent debate over MANH involving numerous American Catholic bishops (part three), and critically evaluating the types of moral arguments that preoccupy many of those who currently write on the ethics of MANH (part four).

MEDICALLY ASSISTED NUTRITION AND HYDRATION IN MEDICINE AND MORAL THEOLOGY: A CONTEXTUALIZATION OF ITS PAST AND A DIRECTION FOR ITS FUTURE BY JOHN BERKMAN The Catholic University ofAmerica Washington, D. C. [Reprinted from THE THOMIST, 68, 1, January, 2004] The Thomist 68 (2004): 69-104 MEDICALLY ASSISTED NUTRITION AND HYDRATION IN MEDICINE AND MORAL THEOLOGY: A CONTEXTUALIZATION OF ITS PAST AND A DIRECTION FOR ITS FUTURE 1 JOHN BERK-MAN The Catholic University of America Washington, D.C. F OR A SIGNIFICANT PORTION of 1980s, ethical issues regarding the use of various forms of support to prolong life grabbed newspaper headlines in the United States. Highprofile legal cases over "right to die," such as those of Karen Ann Quinlan and Nancy Cruzan, became legal landmarks. Other highly publicized cases, such as those of Brophy, Conroy, Herbert, and Jobes, contributed to making the issue a commonplace part of the news. In the midst of the headlines generated by these and other related cases, many Catholic ethicists attempted to provide analysis and guidance. These cases also elicited frequent formal statements from the Catholic episcopacy, both from individual bishops and from episcopal conferences. 2 1 Thanks to Michael Baxter, Bill Mattison, Joyce McClure, Gilbert Meilaender, John Grabowski, and William Barbieri for helpful comments on earlier drafts of this paper. Thanks also to Jennifer Moore, M.D., and Heidi White, M.D., for insight on current medical practice with regard to MA."!\IH, and to Thomas Bender, M.D., for originally bringing to my attention the Kelly-Donovan debate. Finally, I wish to acknowledge with gratitude the support of the Duke Institute on Care at the End of Life, where I was Visiting Scholar in 2001-02, and where much of the research for this paper was conducted. 2 For example, "Guidelines for Legislation on Life-Sustaining Treatment," U.S. bishops' Committee for Pro-life Activities, Origins 14:32 (24January1985): 526ff.; "Providing Food and Fluids to Severely Brain-Damaged Patients," friend of the court brief by the New Jersey Catholic Conference in the Nancy Ellen Jobes Case, Origins 16:32 (22 January 1987):582ff.; "Georgia Man Asks to Tum Off Life-Supporting Ventilator," friend of the court brief by the archdiocese of Atlanta in the case of Larry James McAfee, Origins 19:17 (28 September 69 70 JOHN BERKMAN Of the vanous ethical dilemmas surrounding decisions regarding the use of life support, none provoked more disagreement among both Catholic ethicists and the Catholic episcopacy than that of the use of medically assisted nutrition and hydration (henceforth Among the episcopacy, this disagreement gained high profile in statements from the Texas and Pennsylvania bishops, as as those of other groups of bishops. There were regular if not constant exchanges between Catholic ethicists on this question through the 1980s and early 1990s. 3 The literature detailing various arguments for or against the use of :MANH in caring for the dying and debilitated is extensive. Yet the thesis this article is that a large part, if not the main thrust, of the debates over MANH have been inadequate and misguided on a number of different levels. I hope to reorient and redirect the debate attending to the medical history of (part 1) and recent medical developments with regard to MANH (part 5), examining and contextualizing the earliest debate (i.e., the 1950s) over MANH among moral theologians (part as well as a more recent debate over MANH involving numerous American Catholic bishops (part 3 ), and critically evaluating the types of moral arguments that preoccupy many of those who currently on the ethics of MAl"'\J"H (part The first section-a brief history nineteenth and twentiethcentury medical practice with regard to MANH-aims to show that inadequate understanding of the medical history, 1989): 273ff.; "The Nancy Cruzan Case," Bishop John Leibrecht, Origins 19:32 (11 January June 1990): 525ff.; "Treatment of Dying Patients," bishops of Florida, Origins 19:3 1989): 47ff. 3 For examples of such exchanges, see John Connery, "The Clarence Herbert Case: Was Withdrawal of Treatment Justified," Hospital Progress (February 1984): 32-35, 70; and John Paris, "Withholding or Withdrawing Nutrition and Food: What are the Real Issues," Hospital Progress (December 1985): 22ff. See also Richard McCormick, S.J., "'Moral Considerations' Ill Considered," America 166 (14 March 1992): 210-14; and Kevin McMahon, "What the Pennsylvania Bishops Really Said," Linacre Quarterly 59 (August 1992): 6-10. For an exchange between William E. May and Kevin O'Rourke, see William E. May, "Tube Feeding and the 'Vegetative' State," Ethics and Medics 23:12(December1998): 1-2; Kevin O'Rourke, O.P., "On the Care of 'Vegetative' Patients: A Response to William E. May's 'Tube Feeding and the "Vegetative" State,'" Ethics and Medics 24:4 (April 1999): 3-4. MANH IN MEDICINE AND MORAL THEOLOGY 71 development, and varying roles of medically assisted nutrition and hydration has led moralists to overly rigid understandings of its place in medicine, One upshot of what I argue in this section is that, for example, attempts to define Mfu"'IH as either inherently "basic care" or "a medical treatment" is an exercise in futility. Such descriptions are only legitimate in specific medical contexts and are "patient dependent." this history providing a sense of the medical context of Mi\NH in 1950s, the second section analyzes what I believe is the first discussion of MANH by American moral theologians, placing it in the context of their broader concern with "the duty to preserve life." The astute reader surmise that the very different medical context for MANH at that time reveals both the achievement and limitations and provisional character of the debate over the Catholic moralists (e.g., Gerald Kelly, S.J.) of that era. In view of the evolving medical context of MANH between the 1950s and the 1980s, one goal of this section is to show the problematic nature of appeals some later Catholic moralists to the authority of earlier authors on the question of The third section examines a more recent Catholic "debate"-one between two groups of groups of American Catholic bishops in the early 1990s-over the appropriate uses of MANH, Even this recent debate cannot be separated from its specific social and medical context, Their debate shows both continuity and development beyond the earlier textbook debates, showing a greater sensitivity to the various contexts which the question can arise. In this debate, the emphasis seems to be moving away from the preoccupation how vigorously to preserve life, and towards asking which lives should be vigorously even not so vigorously) preserved. The concern over questions related to "quality life" is seen in the inordinate attention this debate devotes to questions related to the preservation of lives of patients comas or a PVS (persistent vegetative state). My point in this section is that the traditional question concerning the duty to preserve life has been to some extent preempted by new questions regarding what 72 JOHN BERK.t\1AN constitutes a dying person and the quality of life to be preserved. These new questions-especially those concerning quality of life -are full of conceptual ambiguity and at the same time deeply troubling. In order to clarify the current status of the debate concerning MANH, the fourth section unpacks some of the arguments that had significant currency in the last two decades when arguing that MANH should be discontinued from PVS and other coma patients. Focusing on four recent arguments regarding MANH for comatose patients, this section argues that while adequate decisions regarding the use of MANH must always be relative to the benefit received by the patient, those who wish to withdraw MANH from patients who are not terminally ill and whose lives wiH be extended by MANH bear the burden of proof, morally speaking. In the light of argument made in the fourth section, the fifth section is a reversal of sorts. This section evaluates recent studies on the efficacy of MANH, studies that raise serious questions about the medical benefit of MANH for many classes of patients. Having argued in the fourth section that the presumption should be to give MANH to all who can derive proportionate medical benefit from it, I postulate in the fifth section that many dasses of patients who have been presumed to gain such medical benefit from MANH may not in fact have been benefiting from MANH, and some (as a class of patients) may even have been harmed by If these current studies hold up, the forty-year honeymoon between MANH and much of the medical community be over. As questions continue to be raised about the medical benefits and burdens of MANH, we can expect that the future bring greater attention to various means of and general benefits of oral feeding, and less reliance on MANH. In the light of the medical developments presented in section 5, the article concludes with some reflections on the eating practices of contemporary American culture, and their possible influence on assumptions about the moral appropriateness of MA.NH and feeding the dying and severely debilitated more generally. The debates over Mfu"l\JH the 1980s and early 1990s MANH IN MEDICINE AND MORAL THEOLOGY 73 focused almost exclusively on one aspect of eating practices, namely, their nutritive significance. In other words, concern was focused almost entirely on how morally to evaluate a death that resulted from a lack of nutrition. 4 While some contributors to the debate expressed intuitions about the symbolism of food as an expression of concern for one's parent or relative or friend, little was said about the significance of eating practices theologically-for example, for Eucharistic practices, for maintaining Christian community, for practicing hospitality, etc. For many of those involved in the debate, there was no significant moral difference between eating and receiving nutrition. I conclude this section and the article with observations as to how a Eucharistic vision and Eucharistic practices might guide Christian care of the dying and severely debilitated, including feeding practices. The purpose of this paper will be realized, not if the reader's primary conclusion is that MANH is not as helpful as we have thought and must use it less, only the reader's primary conclusion is that MANH often represents a failure truly to feed the patient, and if it leads to redoubled efforts to find a more holistic means of feeding all persons whenever it is beneficial to them. I. MEDICALLY ASSISTED NUTRITION .AND HYDRATION: A SHORT HISTORY AND OF RECENT PRACTICE5 From ancient times, people have received nutrition in ways other than through oral feeding. Greek physicians made extensive use of nutrient enemas, delivering various broths as well as wine, milk, and whey through this means. Hippocrates was one of many 4 Some saw failing to feed as allowing the patient to be "starved" to death. Others saw feeding (specifically comatose) patients as a failure of faith with regard to Christian belief in the resurrection of the body. 5 Good general histories of alternatives to oral feeding include Henry T. Randall, "The History of Enteral Nutrition," in J. L. Rambeau and Michael D. Caldwell, eds., Clinical Nutrition, vol 1: Enteral and Tube Feeding (Philadelphia: W. B. Saunders Co., 1984), 1-9; and Laura Harkness, "The History of Enteral Nutrition Therapy: From Raw Eggs and Nasal Tubes to Purified Amino Acids and Early Postoperative Jejuna! Delivery, of the American Dietetic Association 102 (2002): 399-404. 74 JOHN BERKi\1AJ.'\T who advocated rectal tube feeding. Devices were developed in the eighteenth and nineteenth centuries that delivered nutrients by such means as along as the colon. Articles in British and American medical journals in the latter part of the nineteenth century discussed a wide variety of nutrients introduced in this way. 6 Perhaps the most high-profile recipient of rectal feeding in the nineteenth century was President Garfield, who was fed in this way every four hours for most of the seventy-nine days he survived after being wounded by an assassin. 7 While the earliest recorded use of a tube for feeding directly into the esophagus, stomach, or jejunem is in the fourteenth century, it first came into widespread use in the nineteenth century. 8 At the time such methods were known as gavage or force-feeding. Their first common use was apparently for feeding patients of insane asylums in the first half of the nineteenth century. Such feedings were through tubes inserted either through the mouth (orogastric feeding) or the nose (nasogastric feeding). In the latter half of the nineteenth century, both nasogastric and rectal feedings were widely used. 9 By the end of the nineteenth century pediatricians were advocating such feedings for premature for infants and children with diphtheria and other 6 See C. E. Brown-Sequa.rd, "Feeding per rectum in Nervous Affections," Lancet (1878): 1:144. Also Y. M. Humphreys, "An Easy Method of Feeding per rectum," Lancet (1891) 1:366-67. 7 W. D. Bliss. "Feeding per rectum: AJ; Illustrated in the Case of the Late President Garfield and Others," Medical Record 22 (1882): 64-69. 8 Such tubes were also used for removing poisons or other unwanted contents of the stomach. The first reported use of a tube for aspirating the contents of the stomach was in 1813 by a professor of surgery at the University of Pennsylvania (P. S. Physick, "Account of a New Mode of Extracting Poisonous Substances from the Stomach," &lectic Repertory and Analytical Review 3:1 [October 1812]: 111-13; also see Morton D. Pareira, Therapeutic Nutrition with Tube Feeding [Springfield, HI.: Charles C. Thomas Publisher, 1959], 11). Combining lavage and gavage was being done by 1939, when Stengei and Ravdin reported on inserting twin tubes at the time of gastric surgeries, one into the jejunun1 for feeding and the other into the stomach for removing gastric contents. See A. Stengel, Jr., and I. S. Ravdin, "The Maintenance of Nutrition in Surgical Patients with a Description of the Orojejunal Method of Feeding," Surgery 6 (1939):511-19. 9 Randall, "The History of Enteral Nutrition," 2. MANH IN MEDICINE AND MORAL THEOLOGY 75 acute ailments. 10 One physician noted that while such MANH was best carried out by a physician, any intelligent nurse or parent could be taught how to administer it. 11 While numerous developments in both the techniques of tube feeding and the nutritional content of tube feeding occurred in the first half of the twentieth century, the first monograph devoted to the practice of tube feeding-in particular to scientifically demonstrating its positive effects-was published by Morton Pareira in 1959. Pareira noted that while knowledge of tube feeding had been commonplace, use of tube feeding had up to that time been "sporadic and limited. " 12 Scientific studies of the beneficial effects of tube feeding were only begun the early 1950s. Three large studies (at least 100 patients in each study) including one by Pareira and associates showed the beneficial effects of tube feeding on a wide range of patients who were suffering from malnutrition. 13 Pareira classified the 240 patients in his 1954 study into nine categories. Since practically all of his patients showed improvement from tube feeding, he considered all categories as indications for tube feeding. For example, he considered patients suffering malnutrition because of localized mechanical impediments (e.g., maxillofadal surgery or paralysis of swallowing muscles) and because of the nature of their postoperative convalescence (e.g., whose malnutrition persisted because of anorexia) to be indications for tube feeding. 10 Gavage feeding of premature infants was popularized by the first modem authority on the feeding of premature infants, the French physician Stephane Tamier (1828-97), and furthered in America by the work of Julius Hess (1876-1955), who in 1913 opened the first continuously operating center for premature infants in the United States. See Frank Greer, "Feeding the Premature Infant in the 20th Century," The Journal of Nutrition 131 (2001): 426S-430S. 11 W. A. Morrison, "The Value of the Stomach-tube in Feeding after Intubation, Based upon Twenty-eight Cases; Also its Use in Post-diphtheritic Paralysis," Boston Medical and Surgical Journal 132 (1894):127-30. 12 Pareira, Therapeutic Nutrition with Tube Feeding, 13. 13 T. Boles, Jr., and R. M. Zollinger, "Critical Evaluation of Jejunostomy," Archives of Surgery 65 (19 52):358-66; L. S. Fallis and J. Barron, "Gastric and Jejuna! Alimentation with Fine Polyethylene Tubes," Archives of Surgery 65 (1952): 373-81; M. D. Pareira, E. J. Conrad, W. Hicks, and R. Elman, "Therapeutic Nutrition with Tube Feeding," Journal of the American Medical Association 156 (1954): 810-16. JOHN BERKMAN 76 Pareira included patients unable to eat because of systemic mechanical impediments related to sensorial depression {i.e., patients in a prolonged coma) and patients suffering from terminal cancer as two other indications for tube feeding. 14 Although he only referred to the beneficial effects of tube feeding for coma patients in passing, he devoted a chapter of his short monograph to the benefits of tube feeding for patients with terminal cancer. Pareira studied 64 terminal cancer patients. 15 Most were bedridden, and all were malnourished and anorexic. After pursuing various means and incentives to get these patients to eat, such attempts were abandoned and the patients were tubefed. With the exception of the few patients who were imminently dying, anorexia disappeared in all of the tube-fed patients. The return of appetite occurred in these patients between one and three weeks after tube feeding was initiated. Evidence of the return of appetite was demonstrated by the number of patients who desired to "eat around the tube" and their action doing so if permitted. Pareira found that while most of these patients were considered imminently dying when admitted, many who were thought to be terminal were rehabilitated for a period of many months prior to their eventual death. While initially almost all were bed-ridden, the majority of the tube-fed patients became at least partially ambulatory, more comfortable, and less dependent on nursing care. Pareira concluded that these patients were undernourished not because of any specific effects of the cancer, but because of anorexia. By restoring appetite through tube feeding, the condition of patients who were becoming progressively malnourished was reversed, improved nutrition leading to the return of appetite. While Pareira was unable or unwilling to make claims about increased longevity, he considered the beneficial clinical effects of tube feeding, including a return of strength and increased sense of well-being as well as a return of appetite, to be dear. The resulting situation was also happier for patients and their families. See Pareirai, Therapeutic Nutrition with Tube Feeding, 8, 16-17. Pareira notes that none of the patients had tumors that involved the gastrointestinal tract (ibid., 34). 14 15 MANH IN MEDICINE AND MORAL THEOLOGY 77 Extensive developments in MANH would go on the 1960s and 1970s, leading to a widespread use of MANH. However, it suffices for our purposes to note that Pareira's conclusions about the therapeutic efficacy of MANH for a broad range of acutely and chronically patients and its palliative benefit for dying patients have been widely accepted up to the recent past. Later I will discuss recent medical studies that question these assumptions about the efficacy of MANH, but it is important that we be aware of this prevailing medical context for discussions and debates regarding the use of MANH from the 1950s through the 1990s. This context is important for three reasons. First, we saw above that while alternatives to oral feeding were certainly employed in a large number of contexts in the first part of the twentieth century, the clinical benefits of MANH were not scientifically demonstrated until the mid-1950s and their use did not become routine until the 1960s. However, the first discussion of MANH by Catholic moral theologians took place in the late 1940s and early 1950s. Therefore, it is important carefully to contextualize the conclusions drawn by those moral theologians in relation to the medical status of MANH at that time. Second, in considering how best to characterize tube feeding morally, the diverse purposes for which it is employed must be adequately considered. For example, tube feeding is sometimes employed not because oral feeding is no longer physically possible but as a supplement to or an improvement over oral feeding, and sometimes as a substitute for convenience rather than out necessity. Thus it is important to note that MAi."1\JH, even for coma patients, is not necessarily employed because coma patients are "unable to chew and swallow." For example, long before tube feeding was widely available, at least some coma patients were sustained for many years. Though I have not been able to obtain data on nutritional arrangements for coma patients from the nineteenth and early twentieth century with long-term survival, I presume that some of these patients were fed orally and others were fed via nutritional enemas. While some coma patients are unable to chew and swallow, this is not a universal feature of 78 JOHN BERKMAN coma patients. Certainly, to feed coma patients--or patients with a wide variety of other debilities-orally often takes a great deal of time and effort and such patients may aspirate (i.e., choke on) their food. These kinds difficulties often make oral feeding an extremely unpalatable choice for nurses or other health-care providers. While tube feeding may often rightly instituted for efficiency and safety, we should not conclude that all such patients 16 are unable to chew and swallow Third, this brings us to a further issue related to the cost and convenience of tube feeding. Whereas reference is sometimes made to the high cost of maintaining tube-fed patients in hospital, it is neither true that patients must be tube-fed in hospital nor that tube feeding is necessarily a costly option. Tube-fed patients are more often than not in nursing homes and often at home. 17 Patients in nursing homes sometimes (unfortunately) come to be tube-fed because they experience significant weight loss, and rather than hiring additional staff to supervise the patients' eating practices or to take the time to assist them in eating, tube feeding is prescribed. While a lack of assistance or supervision by no means accounts for all or even most cases of nursing-home patients losing weight, the fact that it is often less costly to have a patient on a feeding tube than to hire additional staff to customize meal preparation or to supervise eating probably provides a disincentive to improve oral feeding efforts. Furthermore, Medicaid and other forms of insurance typically 16 A neurologist well known for advocating the withdrawal of MANH from PVS patients acknowledges that "[b]ecause PVS patients often have an intact involuntary swallowing reflex in addition to intact gag and cough reflexes, it is theoreticaily, and in rare cases practically possible, to feed these patients by hand. However, this usually requires an enormous amount of time and effort by health-care professionals a.'ld families. If the patient is positioned properly, and food is carefully placed in the back of the throat, the patient's involuntary swallowing reflex will be activated" (Ronald Cranford, "The Persistent Vegetative State: The Medical Reality," Hastings Center Report 18 [February/March 1988]: 31). 17 See Catherine H. Bastian and Richard H. Driscoll, "Enteral Tube Feeding at Home," in Rombeau and Caldwell, eds., Clinical Nutrition, 1:494-511. MANH IN MEDICINE AND MOR!-ll THEOLOGY 79 provide additional reimbursement for tube feeding but not for special meal preparation or assisted oral feeding. 18 IL THE CHRISTIAN'S Durr TO PRESERVE LIFE With this brief history and overview of tube-feeding practices in place, we are now in a position to tum to the first significant analysis of the ethics of tube feeding in moral theology. Of the various textbooks in medical ethics produced by Catholic moral theologians between the 1940s and 1960s, two of the most popular and significant were Gerald Kelly's Medico-Moral Problems and Charles McFadden's Medical Ethics. 19 While the majority of these texts focused on beginning of life issues, each dedicated a chapter to the topic of the duty to preserve one's life. This discussion was generated at least in part by the desire to help the dying distinguish suicide acceptable forgoing of some medical treatments, and to help medical professionals distinguish euthanasia from appropriate withdrawals of treatment. For Kelly and McFadden, the Catholic tradition's key principle for discerning the extent of the to preserve life was the distinction between ordinary and extraordinary means of 18 Note that "in most states, there is a higher reimbursement rate for tube-fed patients, and hand-feeding a disabled resident takes considerably more staff rime than operating a feeding rube pump," (Susan Mitchell, D. K Kiely, and L.A. Lipsitz, "Does Artificial Enteral Nutrition Prolong Survival of Institutionalized Elders With Chewing and Swallowing Problems?" Journal of Gerontology 53A, no. 3 [1998]: M212). The authors are citing B. Leff, N. Cheuvront, and W. Russell, "Discontinuing Feeding Tubes in a Community Nursing Home," Gerontologist 34 (1994):130-33. 19 Gerald Kelly, S.J., Medico-Moral Problems (St Louis: Catholic Health Association of the United States and Canada, 1958), 128-41; Charles McFadden, Medical Ethics (5th ed.; Philadelphia: Davis and Company,1961), 227-32. For further elaboration of Kelly's viewpoint, see Gerald Kelly, S. J., "The Duty of Using Artificial Means of Preserving Life," Theological Studies 11 (June 1950): 203-20. For a history of these texts in medical ethics by Catholic moral theologians and claims about the centrality of the work of Kelly and McFadden, see David F. Kelly, The Emergence of Roman Catholic Medical Ethics in North America (New York: Edwin Mellen Press, 1979). For a more extensive examination of the principle of ordinary and extraordinary means of treatment from the same period as Kelly and McFadden, see Daniel Cronin, The Moral Law in Regard to the Ordinary and Extraordinary Means of Conserving Life (Dissertatio ad lauream; Rome: Gregorian University, 1958). 80 JOHN BERKMAN preserving life. 20 Their texts include definitions of the principle, a history of the principle, and examples for its application. In itself, the principle is straightforward. A patient is obligated gratefully to receive ordinary means of preserving but may decline extraordinary means. defining what constitutes ordinary means, Kelly and McFadden note that physicians and moralists typically mean different things by the term. For a physician, .. ordinary means" typically refers to those medicines or procedures that are, for example, commonplace, standard, and accepted. For a moralist, ordinary means of treatment includes "all medicines, treatments, and operations, which offer a reasonable hope of benefit for the patient and which can be obtained and used excessive expense, pain, or other 21 inconvenience." Whereas for a physician "ordinary means" refers to a medicine or treatment in itself, for a moralist what constitutes ordinary means is always dependent upon the benefit gained from the particular treatment by the patient relative to his 20 This traditional distinction between ordinary and extraordinary means of treatment continues to function normatively and institutionally in Catholic healthcare in the United States, with its inclusion in the fourth edition of the Ethical and Religious Directives for Catholic Health Care Services (2001), Directives 56 and 57 read as follows: 5 6. A person has a moral obligation to use ordinary or proportionate means of preserving his or her life. Proportionate means are those that in the judgment of the patient offer a reasonable hope of benefit and do not entail an excessive burden or impose excessive expense on the family or the community. 57. A person may forgo extraordinary or disproportionate means of preserving life. Disproportionate means are 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. We find four key elements in these two directives. First, discernment of whether a treatment is ordinary or extraordinary requires the judgment of the patient, Second, the patient needs to judge what constitutes a treatment's offering a reasonable hope of benefit. Third, the patient needs to judge whether a proposed treatment entails a severe or excessive burden. Fourth, the patient needs to judge whether a proposed treatment imposes an excessive expense on the family or the community. 21 Kelly, Medico-Moral Problems, 129. Compare this statement of ordinary treatment with that of Ethical and Directives 56, above. MANH IN MEDICINE AND MORAL THEOLOGY 81 particular condition at a particular time. Thus, for a moralist, the same treatment may at one point in a patient's illness be considered ordinary, whereas at another stage it may be considered extraordinary or even useless, depending on possible efficacy. Kelly roots this principle in the difference between absolute and relative duties the Christian. Whereas the prohibition on taking one's own life is absolute (the duty to avoid doing the obligation to preserve one's own Hfe is limited (the duty to do positive good). Since one's obligation to preserve one's life is limited, a number of different considerations can render a treatment extraordinary. Kelly cites three examples from the history of moral theology a hardship or burden was regarded as rendering a means of treatment extraordinary: going into a debt that would place hardship on one's family, undergoing a tremendously painful surgery or amputation (e.g., prior to the development of anaesthesia), or moving to a far country to preserve or restore one's health (i.e., in a cultural context in which people's identities were firmly rooted in the land and their families and at a time when such travel was difficult, dangerous, and likely permanent). 2 2 Of course, some of what constituted serious burdens in centuries past (e.g., travelling to another country for a cure or undergoing an operation) are no longer a serious burden for most persons today. Such categories are themselves always open to revision in relation to medical, technological, and cultural changes over time. Kelly and McFadden consider the 1950s equivalent of MANH when they discuss the appropriateness of withdrawing intravenous feeding from a patient in the last stages of a painful death from cancer. The patient, though racked pain, continues to linger on, sustained by the intravenous feeding. 23 In the case they Kelly, Medico-Moral Problems, 132. With intravenous feeding, nutrients are introduced into veins rather than into the stomach or jejunum. Such forms of feeding (now referred to as total parenteral nutrition) are used with some patients (e.g., patients who have had their small intestine removed and cannot adequately absorb nutrients received enterally). However, intravenous feeding is typically not the nutritional therapy of choice because of its negative effects on the veins through which they are delivered. While I do not have definitive data on the efficacy of intravenous feeding 22 23 82 JOHN BERK.l\1AN discuss, the physician removes intravenous feeding, and the patient dies within twenty-four hours. 24 Presumably the patient dies from a complication related to a lack of hydration. Was such a decision appropriate? McFadden presents different answers from three moral theologians before presenting his own view. Joseph Sullivan argues that means of preserving life must be seen in relation to the patient's condition. Since the patient has no hope of recovery and is suffering extreme pain, the intravenous feeding is to be classified as extraordinary. 25 J.P. Donovan argues that since the feeding nourishes the patient, it must be considered ordinary care and the removal of such sustenance is the equivalent of mercy killing. 26 G. Kelly says that, although he understands the prolongation of life in such circumstances as "relatively useless," he would continue with the intravenous feeding unless the patient objected to it. On the other hand, he also acknowledges that if the patient were incompetent and the physician and family thought that he was racked pain to such an extent that he was not spiritually profiting from his state, they might reasonably presume that he does not want the feeding. Kelly is reluctant to propose this solution, out of fear that people might regard it as "Catholic euthanasia." Instead, he says that efforts should be directed towards better pain management. He does not insist on this as the only recourse, but advises the employment of extreme caution with possible instances of forgoing the preservation of life. In response to these three alternatives, McFadden states his own view that while in theory such intravenous feeding would be considered extraordinary, in practice its withdrawal should be rejected. His objections include Kelly's arguments regarding as it would have been done in the 1940s, I believe that such feedings would have been very limited in terms of delivery of calories and nutritional balance, and would have likely led to numerous other medical complications. However, delivery of simple hydration intravenously would have been provided with greater ease and fewer complications. 24 See McFadden, Medical Ethics, 229-30. 25 J. V. Sullivan, Catholic Teaching on the Morality of Euthanasia, Catholic University of America Studies in Sacred Theology, 2d ser., 22 (Washington, D. C.: The Catholic University of America Press, 1949), 72. 26 J. P. Donovan, "Letting Patients Die; Plight of a Vasectomized Man," Homiletic and Pastoral Review 49 (August 1949): 904. MANH IN MEDICINE AND MORAL THEOLOGY 83 scandal and the slippery slope to euthanasia, and the claim that a medically useless treatment may have other spiritual benefits. In addition to the case of the imminently dying cancer patient, Kelly and McFadden comment on a case where a patient has lapsed into what appears to be a terminal coma. 27 If the patient is not spiritually prepared for death, then it is obligatory to maintain him with the hope that he will recover from the coma. If the patient is spiritually prepared for death, then both Kelly and McFadden consider it to be appropriate to cease intravenous treatments once it is medically established that the coma is in all likelihood irreversible. According to Kelly, intravenous feeding to terminal coma patients "creates expense and nervous strain without conferring any real benefit. " 28 While these analyses of the question of the use of .MANH to dying and/ or debilitated patients were the first attempts to address this question, and seemingly produced at best a provisional solution to this problem, they have been extremely influential. primary author of the Kelly is well known to have been earliest editions of the Ethical and Religious Directives for Catholic Health Care Services, which influenced thinking about this question and continues to function authoritatively Catholic health-care services, albeit in an edition further revised by others. McFadden's and particularly Kelly's writings on MANH are widely cited moral theologians who argue very different viewpoints about .M.ANH, not least because some of the ambiguities in Kelly's response make it easy to see it as supporting one's own viewpoint. However, their writings on the subject of MANH reflected the medical practices their (i.e., regarding the immediate impact withdrawing MAi"\fH from a cancer patient, or the nature coma state), practices significantly different from those of the present. In particular, their medical assumptions about coma states was different from those current decades later, when question of MANH for patients in 27 It is not exactly dear what Kelly means by ｾｴ･ｲｭｩｮ｡ｬ＠ coma." Some moral theologians have interpreted this as being a patient in a persistent vegetative state, but this is by no means clear. 28 Kelly, "The Duty of Using Artificial Means of Preserving Life," 230, cited in Mcfadden, Medical Ethics, 232. 84 JOHN BERKt\.1At"'l" coma and/or PVS states would become the focus of a major debate within the American Catholic episcopacy. RECENT EPISCOPAL INTERPRETATIONS OF THE DlJTY TO PRESERVE LIFE As we saw in the previous section, the key principle regarding the withdrawal of MANH from a dying person has traditionally been that ordinary versus extraordinary means of medical treatment. While certainly a live issue in the 1950s and 1960s, the question of withholding or withdrawing life-supporting treatments such as MANH came to much greater prominence in the 1970s. In this dawning of an era of increasingly technological medicine combined with an zealous imperative to prevent death at all costs, the careful casuistry the Catholic tradition on ordinary versus extraordinary means of treatment was seemingly overwhelmed by two competing viewpoints. On the one hand, there was the approach of a well-meaning but at times overzealous medical profession eager to use all the tools at its disposal to save lives. On the other hand, there was the approach of an increasingly large group of persons who began to see the medical establishment as infringing on their right to self-determination at the of their lives. In response, the "right to die" movement was born. In different ways, these two competing approaches departed from the classic "patient-dependent" understanding ordinary treatment of the dying. While the medical establishment could be accused of sometimes forgetting the integral of the individual patient in the quest to use possible life-prolonging treatments, the "right-to-die" contingent substituted "patient autonomy" for a measured understanding of the good the patient. Determinations of the good of the patient were increasingly subsumed the question of who had the to make decisions regarding the patient's treatment. the these two different, competing viewpoints were out in a number of very high profile legal decisions, in particular the Karen Quinlan and Nancy Cruzan cases. MANH IN MEDICINE AND MORAL THEOLOGY 85 During the 1980s and 1990s, a number of bishops and dioceses submitted briefs for these cases and/or made public comment on the legal decisions. Among these various statements, two are particularly noteworthy. In May 1990, sixteen of the eighteen Texas Catholic bishops issued an "Interim Pastoral Statement on ｾａＮｲｴｩｦ｣｡ｬ＠ Nutrition and Hydration." In January 1992, the Pennsylvania Catholic bishops issued "Nutrition Hydration: Considerations." These rwo episcopal documents follow closely the approach of Kelly and McFadden. Both see the issue as that of the appropriate care for and preservation of human life. Both appeal to the principle of ordinary and extraordinary means of treatment as the key principle for discerning appropriate efforts toward preserving life, and both examine the examples of providing nutrition and hydration for dying cancer patient and the comatose patient. regard to example of for dying cancer patient, the Texas and Pennsylvania bishops follow Kelly and McFadden in theory but not practice, that both argue that forgoing MANH can be acceptable in practice as well as in theory. The Texas bishops argue this implicitly when they follow the 1986 statement the NCCB's Committee for Pro-Life that "medical treatments may have to take account of exceptional circumstances, where even means for providing nourishment may become too ineffective or burdensome to be obligatory. " 29 The Pennsylvania bishops argue the point explicitly, seeing example as a "relatively easy" case of it is appropriate to withhold or withdraw MA.i"l\JH: In the case of a terminally ill cancer patient whose death is imminent, for instance, the decision to begin intravenous feeding or feeding by nasogastric tube or gastrostorny may also mean that the patient is going to endure greater suffering for a somewhat longer period of time-without hope of recovery or even appreciable lengthening of life. Weighing the balance of benefits and burdens makes it easy to decide that this could fall into the category of 29 Texas Catholic Bishops, "Interim Statement on Withdrawing Artificial Nutrition and Hydration," Origins 20:4 (7 June 1990): 54, quoting from NCCB Committee for Pro-Life of the Terminally Ill," Origins 16:12 (4 September 1986): 222ff. Activities, "The ｒｩｾＧＱｴｳ＠ 86 JOHN BERJC"l\iAN extraordinary means and that such feeding procedures need not be initiated or may be discontinued. 30 Here we see an apparent change in practice (though not in principle) of Catholic teaching on the use of MANH for those imminently dying in significant pain. When it comes to the example of the use of MANH for comatose (especially PVS) patients, the Texas and Pennsylvania bishops part company. Since the question of providing MANH for PVS patients has provoked perhaps the most medical and ethical disagreement among bishops' conferences and among Catholic moral theologians, the rest of this section and the next section focus on this particular class of patient, before returning to a more general discussion in the final section. an According to the Texas bishops, patients in a PVS or irreversible coma are stricken with a fatal patholog-y. Thus, decisions about when it is appropriate to withhold or withdraw MANH are to be judged individually, ascertaining the relative burdens or benefits of using MANH deciding accordingly. According to the Texas bishops, in this situation the evaluation of benefits and burdens is to be made by the proxy based on the expressed wish of the patient. They do not say what should be done in the situation in which the express wishes of the patient are not known, since they say that a person in PVS or an irreversible coma "has come to the end of his or her pilgrimage and should not be impeded from taking the final step," it would seem that they have no principled objection to a proxy withdrawing MANH. 31 The Pennsylvania bishops diverge from the Texas bishops on this question at a number of points. Whereas the Texas bishops PVS and define limit their discussion to irreversible comas and neither, the Pennsylvania bishops seek to avoid possible confusion by distinguishing a range of unconscious or seemingly unconscious states, not all of which are properly referred to as either a coma Pennsylvania Catholic Bishops, "Nutrition and Hydration: Moral Considerations," Origins 21:34 (30 January 1992): 547. 31 Texas bishops, "Interim Statement on Withdrawing Artificial Nutrition and Hydration," 54. 3" MANH IN MEDICINE AND MORAL THEOLOGY 87 or a PVS. For example, they describe two forms of apparent unconsciousness, the psychiatric pseudocoma and the locked-in state, where a person is not actually unconscious, but is for different reasons entirely or almost entirely unable to show the typical signs of consciousness. addition, the Pennsylvania bishops consider the term "irreversible coma" an oxymoron, since a true coma is "never permanent." Eventually, a person will either emerge into consciousness or sink into a deeper form of unconsciousness known as a PVS. Furthermore, the Pennsylvania bishops argue that regardless of which state of unconsciousness a patient is in, in none of these states is the patient dead or imminently dying, but is rather debilitated to varying degrees. They acknowledge that while the dominant medical opinion is that patients in a PVS are unlikely to recover, they note that some patients have been known to recover consciousness, and also note that there is debate in the medical literature regarding the likelihood the recovery of PVS patients. 32 Having provided a description of varying degrees of unconsciousness, the Pennsylvania bishops go on to argue that since, unlike the cancer patient, the PVS patient is not "imminently terminal," MANH can serve a life-sustaining purpose and thus prima facie constitutes ordinary care. Although it usually will not contribute to restoring a patient to health, it does serve to preserve the patient's life its current debilitated state. Involved here are two key claims: first, that PVS is not a fatal pathology because the history" of the condition (independently of not receiving nutrition and hydration) is not imminently or even routinely terminal; second, that preserving the life of a person, no matter how debilitated his state, is a benefit. There is no such thing as a life that is of itself of greater burden benefit-that 1s, a not living. 32 For examples of patients who have revived from a PVS, see Pennsylvania bishops, "Nutrition and Hydration," 551 n. 14. For the viewpoint that recovery from a PVS after six months "does occur, but is rare," see The Multi-Society Task Force on PVS, "Medical Aspects of the Persistent Vegetative State: Part II," New of Medicine 330:22 (2 June 1994): 1575; for evidence that recovery from a PVS is more iikely, see Keith Andrews, "Recovery of Patients afer Four Months or More in the Persistent Vegetative State," British 306 (12 June 1993): 1597-1600. 88 JOHN BERKMAN Having accepted that feeding a PVS patient is a benefit to him, the Pennsylvania bishops then engage in an extended examination of potential burdens that might outweigh the benefits of MANH. Interestingly, while consider primarily the possible burdens imposed by the procedure of MANH itself, they also consider, secondarily, the burdens of continued existence in a PVS state. Possible burdens are considered first in relation to the patient himself and second in relation to the family, loved ones, and society. In general, the Pennsylvania bishops conclude that neither the feeding of a person, nor continued existence in that state, is a serious burden to the patient. Furthermore, while acknowledging the potential strain on the patient's family, they do not think that in most cases this justifies a decision to remove MANH from a PVS patient. However, they acknowledge that in some instances a family "may have reached the moral limits of its abilities or its resources, In such a situation they have done aH that they can do, and they are not morally obliged to do more. " 33 willing to acknowledge such possible "exceptions," they do not wish such exceptions to be the basis for a general acceptance of the practice. Initially, the main difference between the positions of the Texas Pennsylvania bishops seems to be descriptive: what constitutes an appropriate description of the PVS patient? such patients have a fatal pathology the inability to chew and swallow, as one ethicist it)? are they simply particularly debilitated patients that require significant care? Upon a closer reading the two documents, deeper disagreements emerge. For example, in citing examples reasonable benefits for a the Texas bishops include "maintenance of life with reasonable hope of recovery." Maintenance or of itself is not included on their list, this is reinforced next statement, that "Even any hope recovery it is an expression of love and respect for the person to keep the patient dean, warm and comfortable." Feeding incurable patients is not included as necessarily an expression of love. Further on the document, discussing patients a lethal pathology, the question of 33 Pennsylvania bishops, "Nutrition and Hydration: Moral Considerations," 549. l\1ANH IN MEDICINE AND MORAL THEOLOGY 89 MANH is presented in such a way that arguments must be provided as to why it should be rather than why it may not. This is a that seems to follow logically from the viewpoint in which human life-independently of the degree function or debilitation-is not considered something worthwhile to be preserved in itself. The disagreements implicit these episcopal statements are given a much dearer articulation in arguments presented by numerous theologians in the years leading up to them. In order better to understand the underlying disagreements that existed both in these episcopal statements and the more general debate among theologians, I will characterize I take to be the four types arguments that were typically presented as moral justifications withholding or withdrawing MANH from patients in a or other coma-like states. FOUR KINDS OF ARGUMENTS FOR WITHDRAWING OR WITHHOLDING FROM COMATOSE PATIENTS However much the episcopal statements we looked at above may differ, even more starkly different viewpoints on these questions can be (as might be expected) the writings of moral theologians. Identifying the arguments which encapsulate requires some effort, since there is no consensus on the meaning and use of key terms such as "benefit," "burden," "fatal pathology," "quality life," and so on. this section, I out and summarize four most influential justificatory arguments withholding or withdrawing for PVS or other seriously ill patients who are unable to be or difficulty being fed by mouth, there is "fatal pathology" argument. On this is unable to chew and is severely debilitated patient considered to have a fatal pathology. Morally speaking, an "existing fatal pathology may be to take its natural course." 34 By "fatal pathology," one may mean one of two things. If one means "fatal if no treatment is given," then this argument 34 Kevin O'Rourke, ｾｔｨ･＠ A.M.A. Statement on Tube Feeding: An Ethical Analysis," America 155 (1986): 321-23, 331, at 322. 90 JOHN BERKMAN on its own establishes very little, if anything. For without someone having at least a potentially fatal pathology, the conversation concerning the duty to preserve one's life never arises. Furthermore, while it is dearly acceptable in some circumstances for a person with a fatal pathology to refuse particular medical treatments, the simple recognition of a person's having a fatal pathology does not provide criteria for morally evaluating treatment decisions. On the other hand, if one means "fatal regardless of the treatment given," then this would seem to mean that the patient is imminently dying, or at least terminally Hi. The terms "imminently dying" and "terminally iH" more unambiguously constitute a prognosis of a particular patient's condition than does "fatal pathology," and thus function better as criteria for evaluating the choice to withhold or withdraw MANH. Unsurprisingly, these terms have been much more widely accepted in the theological and particularly the medical community as appropriate criteria. This distinction sheds light on differences between the debate about MANH by Kelly and others in the 1950s and the debate as it played out in the 1980s. When Kelly and McFadden addressed the issue of "terminal coma," a coma condition as they understood it in light of the medical practices and possibilities of their day was indeed to what could be considered "imminently dying." However, by the 1980s, for good or PVS patients could not for the most part be accurately defined as being imminently dying or even terminally second justification withholding or withdrawing M...\NH from PVS patients is the "inability to pursue the spiritual purpose of life" argument. 35 According to this argument, obligation to prolong human life comes from the need and desire to strive for the purpose of life. Pursuing the spiritual purpose of life requires one to be able to perform human acts (actus humanus). However, smce patients cannot and probably will not be able to 35 fill alternative name for this argument is the "no hope of benefit" argument. On this view "hope of benefit" is understood as a recovery of cognitive or relational functioning that allows a person to perform human acts (actus humanus). MANH IN MEDICINE A.ND MORAL THEOLOGY 91 perform human acts, they can no longer pursue the spiritual purpose of life. Since "the ability to strive for the purpose of life [is] the touchstone for using or forgoing life support for persons with serious ... pathologies.... when people are in a PVS, there is no moral mandate to utilize MANH on their behalf. " 36 This argument-when made in a specifically Catholic context-appeals to a particular interpretation of Aquinas regarding the telos of a human life, and also finds support in a widely quoted address by Pius XII. 37 In terms of the traditional appeal to the benefits and burdens of a medical treatment, the argument is essentially that l'vi.ANH does not benefit PVS patients, and thus is a useless treatment which may not or even should not be administered. The "spiritual purpose of life" argument has considerable appeal, not least because we tend to identify ourselves with the activities that distinguish us as human beings. Advocates of this view tend to distinguish sharply between biological and personal only has significance to the life, arguing that "biological" extent it enables personal life. 38 However, critics of this argument claim that it assumes a dualistic anthropology, requiring persons to disassociate "themselves" and their spiritual purpose from their character as bodily creatures. Critics further note that humans are not "in" their bodies, that bodies are in some sense 39 constitutive of who they are. The "spiritual purpose of life" O'Rourke, "On the Care of 'Vegetative' Patients," 3-4. Pius XH, "The Prolongation of Life: An address of Pope Pius XH to an International Congress of Anaesthesiologists (November 24, 1957)," appendix IV in Conserving Human Life, ed. R. E. Smith (Braintree, Mass.: The Pope John Center, 1989), 312-18. 38 With regard to the biological life/personal life distinction, "[I]t is necessary to distinguish dearly and consistently between physical or biological life and personal life (personhood). When this important distinction is not made, quality of life judgments can equivocate between the value of biological life and the value of personhood" (Thomas Shannon and James J. Walter, "The PVS Patient and the Forgoing/Withdrawing of Medical Nutrition and Hydration" Theological Studies 49 [1988]: 635). With regard to the significance of this distinction for the care of PVS patients, Callahan argues that MANH can be withdrawn from PVS patients because "neither provides any genuine benefit: there is not meaningful life of any kind-it is a mere body only, not an embodied person" (Daniel Callahan, "Feeding the Dying Elderly," Generations 10 (Winter 1985): 17. 39 Thus Gilbert Meilaender argues "Yet for many people the uselessness of feeding the permanently unconscious seems self-evident. Why? Probably because they suppose that the nourishment we provide is, in the words of the President's Commission, doing no more than 36 37 92 JOHN BERKMAN argument typically assumes functional criteria for "personhood" and thus leads to the exclusion of certain classes of human beings from care typically extended to all persons. The argument seems logically to legitimate withdrawal or withholding of MANH not only from PVS or other coma patients, but also from various classes of patients who through genetic disease or other debility are unable to perform human acts. Since these classes of patients cannot benefit from MANH or other medical treatments, there is no purpose to treating them should they develop any kind of lifethreatening (but manageable) illness. Thus, in the 1980s, some theological ethicists accepted discontinuance of MANH to those in a PVS state for reasons similar to that articulated James Gustafson, that for such patients "the qualities that distinguish human beings and are the basis of human valuing of, and respect for, persons no longer exist. " 40 However, other theological ethicists argued that "withholding or withdrawing food and fluids on rationale is morally wrong because it is euthanasia by omission. The withholding or withdrawing of food or fluids carries out the proposal, adopted by choice, to end someone's because that life itself is judged by others to be valueless or excessively burdensome. "41 The above reference to "excessive burden" in fact constitutes two discernible a third distinct argument. This argument also varieties. The first focuses on the burden to patient, the second focuses on the burden to the caregiver, to the family, and 'sustaining the body.' But we should pause before separating personhood and body so decisively. When considering other topics (care of the environment, for example) we are eager to criticize a dualism that divorces human reason and consciousness from the larger world of nature. Why not here? We can know people-of all ranges of cognitive capacity-only as they are embodied; there is no other 'person' for whom we might care. Such care is not useless if it 'only' preserves bodily life but does not restore cognitive capacities. Even if it is less than we wish could be accomplished, it remains care for the embodied person" (Gilbert Meilaender, "On Removing Food and Water: Against the Stream," The Hastings Center Report 14 (December 1984): 12. •o James Gustafson, in a 22 May 1985 letter to John Paris, cited by Richard McCormick in "Nutrition-Hydration: The New Euthanasia," in The Critical Calling (Washington, D.C.: Georgetown University Press, 1989), 377. 41 William E. May, et al., "Feeding and Hydrating the Permanently Unconscious and Other Vulnerable Persons," Issues in Law and lviedicine 3 (Winter 1987): 206. MANH IN MEDICINE AND MORAL THEOLOGY 93 to society. Of the four kinds of arguments distinguished in this section of the paper, arguments from "excessive burden" are those most dosely rooted in the traditional principle of ordinary versus extraordinary means of treatment. Thus, this argument is the basis for Kelly's and McFadden's acceptance-at least in theory-of withdrawing intravenous feeding from a comatose patient. It is also the basis for Pennsylvania bishops' acknowledgment that in some instances MANH a PVS patient could be considered extraordinary treatment and thus morally optional. The first type of "excessive burden" argument emphasizes the burden of MANH for the PVS patient himself. This burden is sometimes expressed in terms the patient's autonomous choice: that the patient would not have wanted to be kept alive in such a state. It is also expressed in terms of the aesthetic disvalue of such a state of existence, described as "offensive" or "repugnant." However, when burden is described in this way, it is unclear whether what is being objected to is the burdensomeness of MANH as a form of treatment or care, or rather the form of life of the patient which MANH helps sustain. Traditional "excessive burden" arguments for withholding or withdrawing MA.NH . depend on the discernment that the being considered excessive is the burden of the treatment, not the burden of life itself. Discerning the motives of patients or their proxies is difficult at best. However, since some PVS patients can be fed orally, one means of engaging in such discernment is to enquire whether the proxy would think it a good thing to feed the PVS patient if that were possible. If that is the case, then it is more likely that what is being rejected is the treatment. However, if the receiving of nutrition by any means is rejected, and there is no reason to believe that the nutrition itself would harm or poison the patient, then there is significant reason to believe that what is being rejected is not a treatment but in that state. However, as such, this is not a form of the traditional "excessive burden" argument against l\1ANH as it is understood terms of the principle of ordinary versus extraordinary treatment, and is more properly seen as what is typically referred to as a "quality of life" argument, which is discussed below. 94 JOHN BERKMAl\f The second type of "excessive burden" argument is one in which 1'v1ANH for the PVS patient is considered burdensome to the family, the caregivers, or society. This is not only the most common justification for withdrawal of MANH from PVS patients, but also the kind of argument which defenders of the classic distinction between ordinary and extraordinary treatment are likely to accept as legitimate in the tradition. More strident advocates of withdrawing MANH from PVS tend to make this appeal by referring to the financial costs to society of maintaining PVS patients, and thus make a generalized argument that the burdens of caring for such patients typically or always outweigh the benefits. Those who more reluctantly acknowledge the legitimacy of the argument that in some situations the burdens of maintaining a PVS patient make MANH an extraordinary treatment--such as the Pennsylvania bishops-focus on limits of a family's ability to care for a PVS patient in a limited number of difficult or unfortunate situations. The fourth and final argument is the "quality of life" argument. We can again distinguish two varieties of argument, which are distinguishable by their different understandings of "quality of " On the one hand, "quality of life" may refer to choices about the quality of living. For example, when one has a particular form of heart disease, having an angioplasty now might result in a stroke and a very debilitated future existence, whereas not having the operation may mean that one will likely die from a heart attack before too long. In making a choice whether or not to undergo angioplasty, a person is making a choice about what kind of life he wants. While these kinds of choices are not strictly commensurable, it is stiH possible to evaluate them, arguing that some are better and others worse, some morally acceptable and others morally unacceptable. For instance, when a person is making a choice whether or not to receive a medical treatment, or between two different possible medical treatments, there are at least three different ways in which we can evaluate the nature of his decision. We may understand him to be (a) choosing between two reasonable alternatives, as in the example of the previous paragraph; MANH IN MEDICINE AND MORAL THEOLOGY 95 making a seemingly imprudent but perhaps defensible choice; choosing to die omission. To take another example, with an elderly but somewhat demented man whose last remaining pleasure is eating, but who is beginning to have problems chewing and swallowing, one could defend a choice to keep feeding him orally, despite the risk of death by aspiration. 42 The second kind of "quality of life" argument is a choice that there is insufficient "quality" in life itself. Like the first variety of "excessive burden" argument discussed above, this argument is typically not a rejection of a treatment because it does not improve or maintain the quality life that one presently has, but is rather a rejection of a treatment because it sustains a life that is not considered to have sufficient quality to be maintained. As such, to withdraw MANH because of this kind of "quality of life" concern is not in fact a choice about appropriate medical care, which is always ordered to benefitting life a patient has, but a nonmedically determined choice about living itself. In this section, I have examined what I take to be the four most significant arguments put forward by moral theologians as a rationale for limiting or forgoing the administration of MANH to PVS and other comatose or severely debilitated patients. While not using or withdrawing MANH from PVS or other severely debilitated patients can be justified in some circumstances, the burden of proof Hes with establishing that the burden of the treatment outweighs the benefit to the patient of maintaining and prolonging his life. Of cou:rse, perhaps the strongest rationale for the widespread administration of 1v1ANH to patients over the last forty years has been the accepted belief that MANH does extend the life of a broad range of patients. This underlying assumption about the efficacy of MANH has recently begun to be questioned by the medical profession, and it is to this that I tum in the next section. 42 For an interesting discussion of why the Catholic tradition does not advocate the protection of one's life and health at all costs, see Bernadette Tobin, "Can a Patient's Refusal of Life-prolonging Treatment Be Morally Upright When It Is Motivated Neither by the Belief That the Treatment Would Be Clearly Futile Nor by the Belief That the Consequences of T reatmem Would Be Unduly Burdensome?" Issues for a Catholic Bioethic, ed. Luke Gormally (London: The Linacre Centre, 1999): 334-40. 96 JOHN BERK.MAN CHANGING MEDICAL PRACTICES WITH REGARD TO MANH In the previous section the focus was on arguments for and against withdrawing MANH from PVS patients. In this final section we return to a more general discussion of changing medical practice with regard to MANH for dying and debilitated patients. In the first section I discussed medical practice over the last thirty years with regard to MANH, how often it is instituted for a variety of reasons that combine perceived safety, cost, and convenience for caregivers. In this section, we look at recent changes in the use of MANH amongst medical practitioners. Two of the key assumptions that have governed the use of ｍａｩＮｾｈ＠ among the elderly and debilitated are that it increases longevity (e.g., for comatose patients) and that it improves quality of life (e.g., Pareira's cancer patients). This assumption has led to the use of .MANH for large numbers of elderly patients in nursing homes, hospitals, and other facilities across America, continues to the present. One of the shared assumptions about MANH by almost all the moral theologians who discuss the ethics of .MANH is that it increases longevity for almost classes of patients. This assumption has been held for the last forty years with little empirical verification. Until recently it was assumed that tube feeding was almost a relatively safe, effective, and therapy. This assumption has been particularly strong United States, where the use tube feeding is to eleven times more common than other industrialized nations. 43 However, the assumption that increases longevity has been challenged by recent studies on a number of different classes of patients. one study published 1998, 5266 elderly nursing-home residents with chewing and swallowing problems were foHowed, 43 See L. Howard, M. Ament, C. R Fleming, and others, "Current Use and Clinical Outcome of Home Parenteral and Enteral Nutrition Therapies in the United States," Gastroenterology 109 (1995): 355-65. Cited in M. L. Borum, J. Lynn, Z. Zhong, and others, "The Effect of Nutritional Supplementation on Survival in Seriously HI Hospitalized Adults: An Evaluation of the SUPPORT Data," Journal of the American Geriatrics Society 48 (2000): 535. MANH IN MEDICINE AND MORAL THEOLOGY 97 to compare the rates of mortality of those with a feeding tube versus those without. 44 Overall, the study found a significantly higher mortality rate for patients with a feeding tube. On the other hand, a significant portion of those patients who employed a feeding tube were later able to be weaned from the tube, though the study does not indicate why this was the case, or whether the patient's chewing and swallowing problems were resolved. The study is aware of the possibility that the increased mortality may be because the tube-fed population was sicker, but also offers a number of other potential explanations for the increased mortality. First, while feeding tubes are often inserted to prevent aspiration, the efficacy of this intervention has never been proven. 45 Second, tube-fed patients have a tendency to be more agitated, which leads to the use of other medications or restraints. Third, tube-fed patients may have a number of other local complications, such as increased diarrhea leading to fluid and electrolyte imbalances, and increased infections from the feeding tube itself, or from it being dislodged. In another study published in 2000 of 2149 patients receiving nutritional support who were seriously (e.g., almost all were also on a ventilator), enteral or tube feeding was associated with increased longevity for patients in a coma. However, it was also associated with decreased longevity for patients with acute respiratory failure, with multiorgan system failure with sepsis, with cirrhosis, and with chronic obstructive pulmonary disease. 46 The authors of the study acknowledge that the significance of their results might be limited because of an inability to adjust for the relative severity of their patients' illnesses (i.e., those receiving nutritional support might have been relatively sicker and thus likely to die sooner). While they do not wish to draw definitive conclusions about the cause for increased mortality among certain classes of patients, the authors of this study do conclude that 44 Mitchell, Kiely, and Lipsitz, "Does Artificial Enreral Nutrition Prolong Survival of Institutionalized Elders With Chewing and Swallowing Problems?," M207-M213. 45 See Thomas Finocane and Julie Bynum, "Use of Tube Feeding to Prevent Aspiration Pneumonia," Lancet 348 (23 November 1996): 1421-24. 46 Borum, Lynn, Zhong, and others, "The Effect of Nutritional Supplementation on Survival in Seriously Ill Hospitalized Adults: An Evaluation of the SUPPORT Data," S33. 98 JOHN BERKMAN certain classes of patients who receive tube feeding may be at increased risk of mortality. At the same time as these studies have been going on, an increasing number of geriatricians have been finding that there are alternatives to overcoming many kinds of chewing and swallowing problems in the elderly. There is presently much work on matching appropriate diets for individual patients, making meals that are appetizing to particular patients, and also finding the kind of consistency of food that patients with chewing and swallowing while problems can assimilate without aspiration. For some patients choke on solids but not on liquids, other patients will choke on liquids, but not on thickened liquids. Whereas in the past a patient's tendency to aspirate a typical menu might have been an indication for tube-feeding, now in some places efforts are going towards tailoring menus to the specific swallowing abilities of a particular patient. This brings us to the question of the future of MANH in medicine. If the studies discussed above are reinforced by other studies, there will undoubtedly begin to be a considerable change in the use of MANH. Because the previous two sections of this paper focused on MA..NH for PVS and other coma patients, and the argument put forth there is that since this class patients is not in any ordinary sense "terminally ill" or "imminently dying" and (b) MANH has been shown to prolong the life of this class of patients, the burden of proof is on those who wish to argue that such patients should not receive MANH, the reader may assume that this paper is strongly advocating the use of MANH for all classes of patients. It is not. While undoubtedly preserving the lives of many persons, MANH also has many deleterious qualities, which have not been addressed widely in either the medical or the ethical literature. Some of these deleterious qualities are medical burdens in the narrow sense: Ｎｍａｾ＠ in some classes of patients may result in reduced longevity, add other medical complications, and increase patient discomfort. On these grounds alone, we are seeing the reduction in the use of MANH for dying and debilitated patients in various medical settings the United States. In the final section, I will argue that moral theologians MANH IN MEDICINE AND MORAL THEOLOGY 99 have a broader and more holistic perspective to offer to the question of the use of MAl'JH for dying and debilitated patients, a perspective that is rarely presented in the moral and theological literature. FEED ME TILL I WANT NO MORE? The perspective to be presented in this last section is encapsulated in a verse by the Welsh poet and hymn writer William Williams. His most famous hymn begins as follows: Guide me, 0 Thou great Jehovah, Pilgrim through this barren land. I am weak, but Thou art mighty; Hold me with Thy powerful hand. Bread of heaven, bread of heaven, Feed me till I want no more; Feed me till I want no more. In Williams's verse, we can see three implicit claims. First, eating is placed in the context of Christian pilgrimage and discipleship. The hungers of a Christian can and should always draw him to the Provider of his daily bread, which God's grace will fulfill those hungers. Second, WiHiams's reference to "being fed" signals the importance of the communal element in Christian eating: pursue their bread, but also accept being Christians not fed, and in doing so accept gifts given to them. Thus Christians accept the gift the Eucharist as sustenance for their lives. Third, in the ambiguity of the term "want" in Williams's verse, we are drawn to the realization that "being fed" is adequately grasped neither as merely a satiation human desires nor as the fulfillment of bodily needs. Rather, Christians' desires and needs integrated with-and if and when necessary, for food are to subordinated to-the ultimate end of the Christian. For the Christian, "feed me tiH I want no more" is ultimately neither a cry of gluttonous self-assertion, nor a medical request for the most efficient delivery of nutrition as long as medical benefits are to be 100 JOHN BERKMAN had, but an exclamation of a commitment to recognize that one's daily bread comes from God and God's people. It is remarkable how little has been written about the theological significance of eating practices. The human practices of dining and/or feeding others has not been a significant topic for most moral theologians. A notable exception to this is a recent article by Patrick McCormick, which focuses on the theological-and especially Eucharistic-significance of eating practices in relation to some of the culinary pathologies endemic in American culture. 47 McCormick seeks to recover a holistic theological perspective on Christian eating practices in light of "Diet America's" current preoccupation dieting. However, McCormick's insights are also applicable, as I seek to show, to Christian reflection on feeding those who are dying and severely debilitated. McCormick seeks to move us toward a more adequate theological understanding of our eating practices. He emphasizes a theological understanding of the significance of the bodily, and challenges contemporary eating practices-specifically those of "Diet America"-in the light of a Eucharistic theology. Thus he asks: if our ability to participate in the mystery of this sacrament depends at least in part on our grasp of the symbols in the breaking, sharing, and eating of this bread and wine, then just how our being immersed in the rituals and customs of "Diet America" affect our experience of the Eucharist? And second, what, if anything, does the Eucharist have to say to our contemporary food culture and larger practices of table fellowship? In what ways does this sacrament of God's creative, redemptive and reconciling love inform and/or challenge the attitudes, practices, and structures of "Diet Ame:rica"? 48 47 See Patrick T. McCormick, "How Could We Break The Lord's Bread in a Foreign Land? The Eucharist in 'Diet America,'" Horizons 25 (1998): 43-57. For other suggestive articles on ways in which Christians might understand their eating practices Eucharistically, see Mark Allman, "Eucharist, Ritual, and Narrative: Formation of Individual and Communal Moral Character," Journal of Ritual Studies 14:1 (2000): 60-67; and especially William T. Cavanaugh, "The World in a Wafer: A Geography of the Eucharist as Resistance of Globalization," Modern Theology 15:2 (April 1999): 181-96. 48 Ibid., 4 7. MAi"'IH IN MEDICINE AND MORAL THEOLOGY 101 McCormick's theological account of the significance of our eating practices begins an appeal to Wendell Berry's claim that with food becoming ever more an efficiently produced, processed, and packaged commodity, we find it increasingly harder to eat with an understanding of our food as a gift of God that involves the labors of others. When we are involved with the growing and/or the preparing and cooking of our food, "we experience and celebrate our dependence and our gratitude, for we are living from mystery, from creatures we did not make and powers we cannot comprehend. "49 This insight is particularly relevant for the situation of person receiving !vlANH. Although tube feeding has always in some sense circumvented eating, at one time it was simply hospital food inserted into a tube and transported into the body. At present it is highly processed, and perhaps the exemplification of the alienation of "food" from its sources, and the mystery and gratitude that food should forth from us. we noted earlier, patients are often tube fed not strictly out of medical necessity, for a variety of conveniences and benefits, which sometimes do not take into account the pleasures and joys of eating of the person who is to be tube fed. McCormick also seeks to show "Diet America's" approach to food alienates us from the pleasures of eating, and on a deeper level, from an adequate recognition of our embodiment. The culture of dieting rejects the pleasures of palate, and, in typically promoting an idealized conception of the body, produces a rejection and/or hatred of real human bodies. McCormick cannot see how can be reconciled a Eucharistic vision that tells us to "taste and see the goodness of the Lord." He notes that "Diet America" is particularly ill at ease with bodies that "grow old, get sick, and die," and women's bodies, which it constantly seeks to "reduce," often "to a number on their bathroom scales, a number which is always too large. " 50 In contrast, McCormick notes that by our participation in the Eucharist, we are transformed into the of Christ, and we are 49 Ibid., 48, quoting from Wendell Berry, "The Pleasures of Eating," in Daniel Halpern, ed., Not for Bread Alone (Hopewell, N.J.: Ecco, 1993), 17. so McCormick, "The Eucharist in 'Diet America'," 52. 102 JOHN BERK.l\1AN to "celebrate our bodies and the bodies of our neighbors.... our bodies are glorious creation ... [which] have been fashioned by God to savor and enjoy that world-indeed they have become God's dwelling place. " 51 McCormick's insights with regard to diet culture's perception of imperfect bodies is dearly present in many discussions of the bodies of the dying and severely debilitated. Such discussions never rejoice in such imperfect and debilitated bodies, but typically speak of the "repugnance" or "burdensomeness" of life itself when it is lived in such bodies. Our culture, prizes efficiency and bodily perfection, is often unable to find anything redeeming in the process of dying of a severely debilitated person. McCormick also powerfully recognizes the communal and social elements of our eating practices. Humans do not merely eat; they dine. Dining is a place of companionship, and cooking is an opportunity to display artistry and hospitality. McCormick states this eloquently: For these tables are not only the places where we share our food and drink, they are also where we bring our stories, raise a toast to our dreams, thank God for our blessings, wekome new family members, and remember old friends. And they are the places we bring the good that has been grown, harvested, and delivered by others, as well as the places where we bow our heads to recall those without tables. They are places for sharing and breaking bread, for making sure that everyone has enough and that no one hoards all the good stuff; for it is a tough thing to enjoy a meal next to someone who is hungry. They are places for reconciliation, for forgiving and making peace with a simple toast or a piece of bread since it is much too hard and stilted a thing to sit around these tables and eat with enemies. And they are places to bring new acquaintances and fashion them into friends or family, because dining is not something we can do well with strangers. If there are things more important than how we behave at our tables-both personal and public-there are not many of them. 52 Herbert McCabe echoes McCormick's argument that our eating practices create our communities, claiming eating alone (and living are unnatural for humans. 53 In 51 52 53 Ibid., 53. Ibid., 54. Herbert McCabe, The New Creation (London: Fontana, 1964). M.!\NH IN MEDICINE AND MORAL THEOLOGY 103 breaking bread and sharing the cup with others, we become reconciled and brought into community with others. The importance of the communal dimension of eating is also usually ignored in ethical discussions of MANH for dying and debilitated patients. For example, as was noted earlier in the paper, nursing-home patients are sometimes started on tube feeding because they are not eating sufficiently by mouth, for whatever reason. While the choice to tube feed may mean improved nutrition given the existing situation, the choice to administer tube feeding may signal the end of efforts to feed the patient by mouth. such cases, it is also the end of one of the main forms of human contact and attention that such a patient may expect to receive. From then on, the nurse or attendant is typically "feeding" a machine, and contact with the patient is likely to be more remote. In addition, a nursing-home patient who is tube fed typically no longer goes to the dining room to eat with others. As such, she is deprived of another main source of human contact and socialization. Finally, the patient is now deprived of a ritual that typically regulates her days and hours, and further alienates him from the typical human activities that are part of defining who we are. McCormick alludes to one other deficiency with the culture of America" its preoccupation with "reducing" human bodies-its rejection hospitality. In the quest to control and reduce the body, diet America is preoccupied with control over all that goes in the body, and so is suspicious of others' offers of hospitality. McCormick notes that "the Christian story is littered with saints like Vincent de Paul, William Booth, and Dorothy Day who spent their honoring and caring for the suffering bodies of neighbors and strangers alike." 54 For Christians, the centrality of the command to perform the corporal works mercy is a stark reminder not only Christian responsibility to show hospitality in caring for the sick and suffering and debilitated bodies of the sick and dying, but also to be willing to receive hospitality when we are debilitated and dying. In the culture of "Diet America," a culture that emphasizes autonomy and self54 McCormick, "The Eucharist in 'Diet America'," 51. 104 JOHN BERKMAN mastery, we should not be surprised to see the spiritual pathology of the refusal to receive hospitality. The Christian witness of hospitality also speaks to the situation of many patients who receive or have received MANH. In most of the contemporary debates about MANH, it is assumed that if MANH is .removed, the person wiH not be fed because she should not or cannot receive any substantive nutrition. While there are certainly many situations when a patient is dying where it is indeed necessary and even best for her not to be fed, it should not be a general assumption that patients who are taken off of MANH are no longer to be fed by mouth. Feeding others and being fed by others is among the most significant acts that Christians do, and not only for nutritive reasons. As persons shaped by a Eucharistic vision of our eating practices, Christians know this well. If and when it is realized that MANH is not as effective prolonging life as it was once thought to be, there wiH be an opportunity in nursing homes and other medical contexts to rethink the significance of feeding. It can be hoped that a Eucharistic vision of the significance of feeding the dying and debilitated will be embodied in these settings, recalling what it might mean to hear the cry of even the dying and severely debilitated to "Feed Me Till I Want No More."

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