By E. Christian Brugger and William E. May
WASHINGTON, D.C., MAY 5, 2010 (Zenit.org).- In this piece, we would like to define the condition to which the term “vegetative state” refers, discuss certain facts about the tragic condition, introduce key ethical principles for analyzing duties that we have to persons in it, and update our readers on the current state of Catholic teaching on providing food and water to patients in a persistent vegetative state.
“Vegetative State” (VS) is a condition marked by a state of apparent vigilance, some alteration of sleep/wake cycles, an absence of any sign of awareness of self or environment and of response to environmental stimuli. The term is used to define this set of observable behaviors and not a specific anatomical abnormality or injury.
“Let me die with dignity”
Many people, perhaps a majority, view the “force-feeding” of VS patients with repugnance and as a refusal to accept the reality of death; consequently, many do not want themselves to be fed in this way. They do not want to be a burden to their families and loved ones and believe it is ethically right to let them die peacefully and not take costly measures that simply prolong their dying. Many have already given instructions in various kinds of “advance directives” that should they be diagnosed in the “vegetative state” they do not want to be given food and hydration by tubal means, but should be treated with dignity and allowed to die. In several states, this view is enshrined in “living will” legislation that grants immunity to doctors executing a patient’s directive to have all food and water withheld even when they are not dying.
It is of the utmost importance to understand that people in this state are not actually dying nor are they suffering from any fatal pathology that will cause their death. Nor, as recent research has shown, are they completely unconscious. The “Joint Statement on the Vegetative State” from a March 2004 congress in Rome on the vegetative state summarizes several important points: 1) In general, patients in the VS do not require technological support in order to maintain their vital functions; 2) VS patients cannot in any way be considered terminal or in immediate danger of death because their condition can be stable and enduring; 3) VS diagnosis requires careful and prolonged observation carried out by specialized and experienced personnel using specific assessment standards for VS patients in an optimum-controlled environment; and medical literature shows diagnostic errors in a substantially high proportion of cases; 4) Modern neuroimaging techniques have demonstrated in some VS patients the persistence of brain activity and response to certain kinds of stimuli, including painful stimuli. Although it is not possible to determine the subjective quality of these perceptions, some elementary discriminatory processes between meaningful and neutral stimuli seem to be possible.
Key ethical principles
There are several ethical principles relevant to assessing moral questions arising from persons said to be in the vegetative state: (1) Human bodily life, however burdened, is still a good of the person, integral to his or her being. (2) It is always gravely immoral intentionally to kill an innocent human being, i.e, to deprive him or her of the good of life itself. (3) Means chosen to preserve human life are morally obligatory if they are “morally” (not necessarily medically) “ordinary” or “proportionate.” (4) Means chosen to preserve human life are not obligatory, and in fact their withholding or withdrawal may be morally indicated if they are “morally” (not necessarily medically) “extraordinary” or “disproportionate.” (5) Means are extraordinary or disproportionate if the means chosen are either futile (=useless) or burdensome. Treatments can be burdensome for different valid reasons such as extreme pain that is unable to be regulated, extreme cost, interference with activities in which one legitimately wishes to engage although suffering from a fatal pathology, or that compel a person to leave loved ones and families to move to another area (e.g., to Arizona from Washington, D.C.), etc.
Note well: One can make judgments about the burdensomeness of different medical treatments because there are ways of objectively assessing the cost, pain, grave impositions on one’s life style etc. But one can never measure the worth of a human life because it is of incalculable worth and not capable of being measured. One cannot put a price on it because it is priceless.
These key ethical principles are applied in recent ecclesiastical documents treating the kind of care due to persons in the “vegetative state.”
Current state of Catholic teaching
At their fall 2009 plenary meeting, the United States bishops revised the ethical guidelines that govern Catholic health care institutions in the U.S. (called the Ethical and Religious Directives for Catholic Health Care Services, or ERDs; there are 72 directives in all). The bishops were concerned principally with directive 59 dealing with the administration of food and water to patients with end of life conditions. An unsettled debate had raged for 30 years in Catholic moral theology over the question of whether providing artificial nutrition and hydration (ANH) to persons diagnosed to be in a persistent vegetative state (PVS) was morally required.
Anyone familiar with this debate will be acquainted with the argument of Dominican Father Kevin O’Rourke, the leading Catholic theologian arguing for the legitimacy of removing food and water from PVS patients. He argues as follows: since the “purpose of life” is to know and love God; and to know and love God one must have the capacity or have the potential to develop the capacity for rationality and volitionality; and since PVS patients do not have this capacity, nor will they develop it; and feeding and hydrating them will not help them to develop it; the administration of food and water to PVS patients is futile and therefore legitimately may be removed or withheld.
Catholic moral theologians, including an author of this essay, replied to O’Rourke’s account numerous times over the years arguing that the administration of ANH should not be judged futile simply because it does not enable a person to pursue spiritual purposes; if O’Rourke’s criterion is taken seriously, then many people besides PVS patients may be denied food and water since their administration would be ineffective in helping the patients pursue spiritual goals (e.g., “seriously mentally impaired infants and children and some elderly people who are ‘not with it,’ who are not actually able to make judgments and choices and thus incapable of pursuing the ‘spiritual goal of life,'” W.E. May, Catholic Bioethics and the Gift of Human Life (2008), p. 279). Food and water therefore should be administered because they are needed to sustain a person’s bodily life, which remains good, personal and invested with human dignity even if the person is highly disabled.
In March 2004, Pope John Paul II settled the open question in moral theology in an address to the Congress on “Life-Sustaining Treatments and Vegetative State” mentioned above. In that address, the Pope taught that there is a moral obligation “in principle” to provide food and water to persons in the “vegetative” state. He emphasized that the administration of food and water, even by artificial means, “always represents a natural means of preserving life, not a medical act.” It therefore “should be considered, in principle, ordinary and proportionate, and as such 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” (No. 4). The Pope said that since withholding food and water from a person in the VS causes death by starvation or dehydration “it ends up becoming, if done knowingly and willingly, true and proper euthanasia by omission” (No. 4).
The U.S. bishops resolved to bring ERD 59 into line with this papal teaching. The original formulation read: “59. There should be a presumption 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 bishops knew that this directive was being interpreted by many health care providers and ethics committees, including at Catholic facilities, as consistent with removing or withholding ANH from patients in the VS. Consequently, their deaths were resulting not from their brain injuries, but by starvation and dehydration. Americans are all too familiar with the sensational cases of Karen Ann Quinlan, Nancy Cruzan and Terri Schiavo, all of whom were diagnosed to be in a PVS and each of whom became a cause célèbre for the right-to-die movement.
In order to prevent this misinterpretation, and to bring the ERD in line with the papal teaching, the U.S. bishops reformulated directive 59 to read as follows (it is now numbered 58): “In principle, there is an obligation to provide patients with food and water, including medically assisted nutrition and hydration for those who cannot take food orally. This obligation extends to patients in chronic and presumably irreversible conditions (e.g., the “persistent vegetative state”) who can reasonably be expected to live indefinitely if given such care. Medically assisted nutrition and hydration become morally optional when they cannot reasonably be expected to prolong life or when they would be ‘excessively burdensome for the patient or [would] cause significant physical discomfort, for example resulting from complications in the use of the means employed.’ For instance, as a patient draws close to inevitable death from an underlying progressive and fatal condition, certain measures to provide nutrition and hydration may become excessively burdensome and therefore not obligatory in light of their very limited ability to prolong life or provide comfort.”
We would like to single out three important points of correspondence between this reformulation and the 2004 papal address. First, that the end or purpose of providing nutrition and hydration is to sustain bodily life. Recall Father O’Rourke’s argument that since food and water will not assist a PVS patient to regain the ability to pursue the “purpose of life,” (i.e., will not correct the brain injury), they can be considered “futile” medical procedures, and be removed or withheld.
ERD 58 makes clear that the purpose for providing food and water is to preserve a patient’s life, whether or not their administration contributes to the remediating of the patient’s cognitive disability. The second point is that all patients who require nutrition and hydration to stay alive (i.e., for whom ANH are proportionate to their end) should receive them. The papal address refers to food and water as “ordinary and proportionate” forms of care. This, of course, is meant to exclude their removal from patients who need them to survive and who would die without them.
The third point is that nutrition and hydration may be removed when they are no longer proportionate to their end or when their administration is gravely burdensome to the patient. As ERD 58 states, when persons are dying, their bodies sometimes reject artificial feeding, in which case ANH may in fact be futile, promising no reasonable hope of benefit or causing severe discomfort to the dying patient. In this case, ANH may be discontinued.
Treatment is burdensome, not the life
This third point deserves some clarification. In saying that ANH may be removed if it becomes excessively burdensome, the directive is not saying that it may be removed if a person judges that his life on a feeding tube is too burdensome. The burden referred to here arises from the administration of ANH itself. Many persons today, however, judging in advance that “life in a coma would be intolerable,” direct their caregivers to have food and water removed if they should fall into a long-term state of unconsciousness.
But as we said, if they are in the VS, they ordinarily are not dying. So if persons direct that food and water — sustenance needed to live — be withheld, it is likely because they want to die — “I don’t want to live like that.” But if their intention in ordering the removal of life support is to die, they have a suicidal intent; and a health care provider who executes this order is assisting in a suicide. If we are to understand ERD 58 correctly, “excessively burdensome” should be understood as pertaining to the burden that the administration of ANH causes the dying patient. The intention then is to live one’s final days free of the distress caused by the administration of ANH. Removal in this case is part of comfort care.
In principle, the directive should not be interpreted as permitting the removal of food and water from patients who are not dying. In fact, this is precisely one of the interpretive loopholes the reformulation intended to close down. It follows that Catholic health care providers should not remove food and water from any patient who needs them to survive.
Life worth living
The ERD revision draws a significant, indeed critical line in the sand. It is grounded in the assumption, widely rejected today, that the life of the body is intrinsic to the life of a person; so if one’s body is alive, even if severely disabled, the person is alive. Thus, sustaining a patient’s life is never meaningless.
This does not mean that human life is an absolute good, and that under every circumstance every possible means should be used to sustain it. This is not, and never has been Catholic teaching. Sometimes Jesus wants us to accept that we are dying and to let the natural course of a pathology unfold. But the goodness of human life does forbid ever acting against it by willing to bring about death as either an end or a means.
It also forbids the judgment that suffering or disability ever render a life “not worth living,” that in some cases there really is no reason to sustain a person’s life. Life’s goodness always provides a reason. Further, in most cases, being fed and hydrated does not impose an excessive burden on a PVS patient or expense to the family. Moreover, as Germain Grisez notes, sustaining a PVS patient’s life “maintains and manifests solidarity with that person: respect and love for them as persons.” Christ teaches that we are to love the least of his brethren, which certainly characterizes PVS patients; so feeding them and giving them water has a Christian significance as well.
In saying that life’s goodness always provides a reason to sustain a person’s life, we do not mean that it is decisive in determining in every instance the question: “Should we continue this or that life sustaining procedure?” Since sustaining a PVS patient’s life ordinarily does not promise him or her remediation of the state of unconsciousness; and since consciousness is a condition for the pursuit of many of life’s goods (although consciousness, of course, is not required to be alive); many of the reasons to act positively to sustain a PVS patient’s life have dropped away … all, that is, but the good of their still being alive. So one is not obligated to do everything possible to sustain the life of a PVS patient, e.g., spend all one’s savings. Removing forms of life support that promise no reasonable hope of recovery, or that are scarce, costly, or extremely invasive can be legitimate. One should do what reasonably can be done to care for a loved one suffering from PVS without feeling that one must do everything that can be done.
We acknowledge moreover that the total care of the person in this state can and does impose a burden — he or she must not only be fed and hydrated, but kept warm in the winter, cool in the summer, given a home etc. But these persons are not the only ones whose care cause burdens: staying up at night with one’s infant child, caring for an elderly parent, tending to the needs of a sick spouse, or a disabled sibling, or an amputee from the military, all impose burdens. But these kinds of care are morally required by the Golden Rule and are honored by any civilized society.
The Golden Rule also requires that a basic level of human care — “ordinary and proportionate” — be provided to PVS patients. We are grateful to the U.S. bishops’ 2009 revision of the ERDs for clarifying that such care includes the provision of food and water.
Notes: This definition is central to the “Joint Statement on Vegetative State” issued by participants at the International Congress on Life-Sustaining Treatments and Vegetative State: Scientific Advances and Ethical Dilemmas sponsored by the International Federation of Catholic Medical Associations and the Pontifical Academy for Life in Rome 17-20 March 2004, accessible at http://www.fiamc.org. We think this is a better description of the “vegetative state” than that given in an earlier study by Bryan Jennett, The Vegetative State: Medical Facts, Ethical and Legal Dilemmas (Cambridge University Press, 2002), chapter 1.  The following sources provide scientific evidence that some VS patients can respond consciously to stimuli in the environment, including painful stimuli: “Silent Minds: What Scanning Techniques Are Showing About Vegetative Patients,” in New Yorker, October 15, 2007, summarizing the work of Adrian Owen, a British neurologist, and “Willful Modulation of Brain Activity in Disorders of Consciousness,” the on-line edition of the New England Journal of Medicine, February 3, 2010, accessible at http://content.nejm.org/cgi/content/full/NEJMoa0905370, summarizing later work of Owen, and the work of Morton Monti, Audrey Vanhaudenhuyse, et al.  The text of the papal address is available at: http://www.vatican.va/holy_father/john_paul_ii/speeches/2004/march/documents/hf_jp-ii_spe_20040320_congress-fiamc_en.html  The bishops’ revision was strongly opposed by progressive Catholic bioethicists and health care providers; e.g., in February 2009, seven directors of bioethics programs at Jesuit universities, calling themselves the “Consortium of Jesuit Bioethics Programs,” published an essay in Commonweal magazine urging the American bishops not to amend the ERD 59. Fortunately, the bishops were not unduly influenced by the essay. See Consortium of Jesuit Bioethics Programs, “Undue Burden? The Vatican and Artificial Nutrition and Hydration,” Commonweal 136.3 (February 13, 2009); see the reply by fourteen Catholic ethicists, including to authors of this essay: “Reply to the Jesuit Consortium,” Ethics & Medics, vol. 34, no. 6 (June 2009), 3-6.  Germain Grisez, “May a husband consent to stopping feeding his permanently unconscious wife?” (Q. 47), Difficult Moral Questions (Franciscan Press, 1997), pp. 218-225.
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E. Christian Brugger is a Senior Fellow of Ethics at the Culture of Life Foundation and is an associate professor of moral theology at St. John Vianney Theological Seminary in Denver, Colorado. He received his Doctorate in Philosophy from Oxford in 2000.
William E. May, is a Senior Fellow at the Culture of Life Foundation and retired Michael J. McGivney Professor of Moral Theology at the John Paul II Institute for Studies on Marriage and Family at The Catholic University of America in Washington, D.C.[Readers may send questions regarding bioethics to [email protected]. The text should include your initials, your city and your state, province or country. The fellows at the Culture of Life Foundation will answer a select number of the questions that arrive.]