I probe my father’s reasoning about such an important decision: “What if I think you’re able to recognize us, but you are unable to speak, communicate or engage us? What about end-stage Alzheimer’s or Parkinson’s, where you might stop eating on your own? You both know that doctors are rather certain that patients in a persistent vegetative state don’t experience pain or discomfort, right?”
“What if I want to keep you alive in that condition?” I ask with a smile.
My father responds with a chuckle. “If there were a decent chance that I’d get better and everything else is working well, then I’d trust your judgment,” he tells me. “Otherwise, the answer is no. Let me go!”
“But why,” I ask, “if you’re unaware of your own condition?”
“Because I know now that I don’t want to continue like that. What am I continuing for? With whom could I communicate? Whom could I love? Would I not have somewhere better to be, anyway?” My father’s quip reflects our shared faith in Christ’s salvific death and resurrection. “Let me go.”
Real people bear both the grace and the burden of thinking as the church does about the meaning of living and dying. So it is with my still-living father’s words in mind that I think about a recent statement of the Congregation for the Doctrine of the Faith concerning the morality of removing artificial nutrition and hydration from a patient who lives in a persistent vegetative state. I have my parents’ power of attorney for health care, a decision they made prompted by the publicity surrounding the Terri Schiavo case. I now have a more personal stake in a discussion that had already engaged me professionally, as a Catholic bioethicist teaching in a Catholic medical school. It is now my responsibility as a son who cherishes his parents to help ensure that the manner of their dying as Catholics will be consistent with the way they lived as Catholics.The U.S. Bishops’ Questions
In March 2004, Pope John Paul II gave an address in which he spoke about artificial nutrition and hydration for patients in a “vegetative state.” He wrote that artificial nutrition and hydration “always represents a natural means of preserving life, not a medical act.” Nutrition and hydration, then, should “be considered, in principle, ordinary and proportionate” means if they achieve their “proper finality”—in this case, providing nourishment to the patient.
That papal statement set off a wave of reaction from the press, the public and the faithful. Many wondered how the Holy See could hold that the surgical insertion of a feeding tube through the abdominal wall did not constitute a “medical act.” Others wondered how the removal of assisted nutrition and hydration in patients in a persistent vegetative state could be an act of “euthanasia by omission” if the intention of the act was to remove an excessively burdensome treatment rather than to kill the patient. Still others questioned whether the description of persistent vegetative state as a “stable” condition was a fair description of a patient who without medical intervention would surely have died from a devastating brain injury that had permanently eliminated the patient’s ability to eat and swallow with conscious purpose.
Seeking clarification of the allocution, the U.S. Conference of Catholic Bishops sent a letter on July 11, 2005, to the Congregation for the Doctrine of the Faith, with the following question:
Is the administration of food and water (whether by natural or artificial means) to a patient in a “vegetative state” morally obligatory except when they cannot be assimilated by the patient’s body or cannot be administered to the patient without causing significant physical discomfort?
When nutrition and hydration are being supplied by artificial means to a patient in a “permanent vegetative state,” may they be discontinued when competent physicians judge with moral certainty that the patient will never recover consciousness?
The bishops’ questions raise three possible exceptions to the general rule that artificial nutrition and hydration for the patient in a persistent vegetative state constitutes ordinary care: first, when artificial nutrition and hydration cannot be assimilated by the patient; second, when artificial nutrition and hydration might cause “significant physical discomfort” to the patient; and third, when there is no hope that the patient will recover consciousness.The Congregation’s Response and Commentary
The congregation answered the questions on Sept. 15, 2007, in a document entitled Responses to Certain Questions of the U.S. Conference of Catholic Bishops Concerning Artificial Nutrition and Hydration. The response to both questions maintains that in principle artificial nutrition and hydration constitutes ordinary care for these patients in all circumstances. In the accompanying commentary, however, the C.D.F. calls attention to the phrase “in principle,” present in the original papal allocution, which allows for possible exceptions to a general rule.
The doctrinal congregation then identifies four such exceptions: first, when remote geography and/or extreme poverty make the administration of artificial nutrition and hydration impossible; second, when “emerging complications” prohibit the assimilation of artificial nutrition and hydration; third, when, “in some rare cases,” it “may be excessively burdensome;” and fourth, when, “in some rare cases,” it “may cause significant physical discomfort.”
In exploring the significance of these exceptions, we must recognize that the document is restricted to a discussion of patients in a persistent vegetative state, a diagnosis that affects only a miniscule number of patients. We must also recognize that a growing popular acceptance of outright euthanasia influenced the congregation’s thinking.‘Medically’ Versus ‘Morally’ Ordinary
The U.S. bishops sought to establish the boundaries within which artificial nutrition and hydration for patients in a permanent vegetative state must be judged morally obligatory. But the presupposition of their questions seems curious in the light of Catholic moral tradition, which has always recognized that a significant difference could exist, in a particular case, between that which is medically ordinary versus that which is morally ordinary.
Procedures that are medically ordinary, in the sense that they are readily available, technically feasible and of biological benefit to the patient, are not always morally required. This important distinction can be found in a document issued by the Diocese of Richmond, Va., that was intended to help patients and families think about their health care decisions:
What the medical profession might consider as “medically ordinary” is not necessarily the same as what the Church states is “morally ordinary.” Doctors might consider a particular procedure “ordinary” because they practice it frequently and expertly. Yet you cannot consider any medical procedure to be always morally ordinary no matter how routinely it is practiced.
The focus of the U.S. bishops’ questions and the C.D.F.’s response is the objective, medical feasibility of a particular procedure. Yet this limited perspective does not take into account in any explicit and satisfying way the patient’s and the patient’s family’s subjective and prudent judgment of whether such a procedure in their particular circumstances is morally ordinary and therefore obligatory.
Quoting from John Paul II’s papal allocution of 2004, the C.D.F. ties the determination of what is morally ordinary to an objective judgment of its medical efficacy: “It is therefore obligatory, to the extent to which, and for as long as, it is shown to accomplish its proper finality, which is the hydration and nourishment of the patient.” In most cases, a patient’s body can assimilate the nourishment that is administered, so that the use of artificial nutrition and hydration can be considered a medically ordinary procedure. But after considering the question of technical efficacy, must one judge this procedure to be morally ordinary when a patient or a patient’s proxy has judged the intervention to be excessively burdensome?The Patient’s Judgment
The Ethical and Religious Directives for Catholic Health Care Services offers further clarification on this important distinction. Directives 56 and 57 state that the determination of what constitutes morally ordinary or extraordinary care should be based on “the patient’s judgment” of the benefits and burdens of a particular treatment. Directive 58 designates that “[t]here 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 for the patient.” It is the phrase “in the patient’s judgment” and the accompanying prudential consideration of burdens and benefits that preserves the distinction between what is medically ordinary and what is morally ordinary. Were this not the case, we would leave all health care decisions to the discretion of competent physicians, who could judge what is medically ordinary in terms of technical efficacy.
In addition to citing the criterion of assimilation, the congregation offers three more objective criteria that could justify exceptions to the general rule: first, when there exist medical problems associated with the administration of artificial nutrition and hydration (the possibility of infection or aspiration, for example); second, when a remote geographical location may preclude access to the technology; and third, when extreme poverty makes the procedure prohibitively expensive. But what would be a moral judgment of these objective circumstances?
Such circumstancs include where one lives, what financial resources are available and what medical complications are likely to arise from the procedure. If the congregation intends to restrict the possible exceptions to its general principle to those cases where objective circumstances make the procedure practically impossible, then there would be no need for directives 56, 57 or 58 or, for that matter, any moral reflection at all.
Such an interpretation, however, runs counter to the experience of patients familiar with the procedure, patients whose consciences are informed by their lifelong Catholic faith. My father, in our conversation at the kitchen table, for example, did not suggest any inclination to end his life prematurely. He does not seek a false sense of control over his dying that betrays the truth of our Christian narrative, namely, that suffering is constitutive of who we are as brothers and sisters of Christ and that the experience of dying, while possibly frightening and lonely, is ultimately identified with Christ’s dying and redeemed in Christ’s rising. But his judgment, informed by his faith, is that a massive neurological injury that leaves him permanently unconscious, unable to purposefully eat or swallow, would constitute in itself a fatal pathology, one that carries no obligation to persist any longer in that state.
When I consider my father’s questions—“What am I persisting for? With whom could I communicate? Who could I love? Don’t I have a better place to be?”—I hear faithful echoes of our Catholic tradition. That tradition consistently affirms that while biological life is an important value, it is not an absolute good. How should my father judge a future burden that is not his now and, were it ever to become his burden, he would not be able to judge?
Perhaps it is in the fourth exception noted by the C.D.F. that my father’s thinking finds its voice. While the other three exceptions offered by the congregation focus on objective circumstances, this final exception simply notes those “rare cases” where artificial nutrition and hydration “may be excessively burdensome.” This exception stands out because it comes with no modification. It simply holds open a possibility. While the C.D.F. does not offer any examples, it sounds to me like the condition my father described over our kitchen table.
My father’s words tell me that he judged the maintenance of his baseline biological existence as a P.V.S. patient to be an excessive burden. It is a burden to him to know now that we, his family, would care for him in this condition for a prolonged period of time. It is a burden to him to know that he would be unable to engage in meaningful human activity. And, finally, it is a burden to him to think that his death from a devastating neurological injury was being held at bay by the insertion of an unwanted and, in his judgment, invasive feeding tube. My father believes that such a procedure would pose an unwanted and unnecessary obstacle to his next life in heaven, the end of a journey he began at birth, the fulfillment of a promise sealed in his baptism.
In other words, my father has judged that the burden of persisting in a vegetative state far outweighs the benefit of being sustained that way. This is, in my view, a very Catholic way of thinking, shared by other faithful Catholics, and consistent with Catholic tradition.