Preserving Life?

Last year, the Italian poet Piergiorgio Welby announced at a press conference that after battling muscular dystrophy for four decades, he would discontinue his ventilator as an act of “euthanasia.” While the ventilator was being stopped, he received large doses of morphine, which could have been independently lethal rather than simply pain-relieving. Welby was a leader of the euthanasia movement in Italy. He seemed to be trying deliberately to blur distinctions and to provoke controversy.

Popular confusion, sensationalistic journalism, and crazy statements on all sides of the case gripped the Italian media for weeks before and after Welby’s death. Vatican officials said that it would be morally licit to stop the ventilator if Welby and his doctor were to decide that the ventilator had become an extraordinary means of care. But by declaring his intent to euthanize himself, Welby had put the church in a difficult position. Finally, the church felt pressed to deny him burial in order to affirm its teaching against suicide. The case was bigger in Italy than Terri Schiavo’s was in the United States.

This controversy—among others—formed part of the backdrop to the Vatican’s September statement on the morality of providing feeding tubes to patients in a persistent vegetative state (PVS). Writing in response to questions from the U.S. Conference of Catholic Bishops (USCCB) regarding the treatment of PVS patients, the Congregation for the Doctrine of the Faith (CDF) ruled that, in such cases, feeding tubes must be considered, “in principle, an ordinary means of preserving life.” The statement seemed to clarify John Paul II’s much-debated 2004 allocution on PVS, in which he referred to artificial nutrition and hydration as “normal care.” Since that statement was delivered in the throes of the Schiavo debate, one could perhaps be forgiven for believing the CDF is responding mainly to the U.S. situation. Yet Vatican statements on PVS must be understood in their proper context. More than most Americans appreciate, that context is shaped by European politics—especially Italian politics and the broader European debate about euthanasia.

The Vatican’s interest in PVS is also driven by its reaction to utilitarianism—especially in English-speaking nations and particularly in Australia, where philosophical utilitarian ethics is perhaps most radical. Utilitarian philosophers have argued in scholarly journals that it would be more morally appropriate to conduct painful experiments on human beings in PVS than on dogs or porpoises, since those in PVS cannot feel pain and have ceased to be persons. This is not a view that is congenial to Catholic thinking and a group of very influential prelates has pressed for doctrinal responses to such utilitarian claims.

In addition, prolife groups have increasingly turned from the frustrating task for which they were originally founded (namely, promoting more conservative laws against abortion), to work for the eradication of all traces of “softness” on prolife issues inside the church. Obviously some theologians have taken positions that are antithetical to church teaching, but in the view of some extremists within the prolife movement, “heresy” simply means disagreeing with one or another of their own extreme positions. Moved by great religious zeal, well-organized, exceptionally skilled in the use of the Internet, highly influential with bishops and in Rome, but largely untutored in formal theology, members of these movements have occasionally lobbied strongly within the church for very specific causes. A few years ago, for instance, in response to forceful lobbying to the contrary, the Vatican was forced to make an official statement that it was morally acceptable for Catholics to treat their children with vaccines produced from cell lines that originated with tissue that had been obtained from fetuses that were aborted more than twenty years ago. Despite the declaration that using these vaccines would not constitute an immoral form of cooperation in the evil of abortion, zealous lobbying on this issue continues. The use of feeding tubes for patients in PVS has been another one of these causes for many years.

Finally, one should not underestimate the influence of the general medical culture in which most Vatican officials live, work, and seek health care. European medical practice, especially in Germany and Southern Europe, remains quite paternalistic, especially when compared with that in the United States. To be sure, the emphasis on patient autonomy in the United States has “run amok” and stands in need of correction. But the concepts of patients’ rights and patient participation in decision making are still unfamiliar to Southern European thinking. “The doctor knows best” largely remains the rule. From inside the Vatican, even advance directives are viewed with deep suspicion as characteristic instruments of American individualism, at odds with Catholic communitarian thinking. Medical advisors to the Vatican are largely of this paternalistic persuasion. Accordingly, the CDF’s interpretation of the issue must be understood as conditioned by the experience of a particular medical culture.

Recent Vatican pronouncements about feeding tubes and PVS must be understood within this larger context. It seems that the Vatican found in PVS the purest case of a human being who was not “productive” and used this issue as an occasion to make a solemn pronouncement that a human being in PVS is a person with full human dignity and rights. What’s more, as a political counterweight to European euthanasia movements, they saw an opportunity to draw a line in the sand far on the side of preserving life—an extreme position to counter extreme positions supporting euthanasia. The statement is of a piece with the general sentiments of a paternalistic medical culture shared by Italian physicians and their patients (including Vatican officials), and also satisfies the internal demands of the church’s own prolife movement. One might question the political and theological wisdom of allowing a dogmatic decision to be so shaped by these influences, but the most fundamental values at stake are widely shared within the church. No orthodox Catholic could deny that PVS patients are persons with full human dignity, or argue in favor of euthanasia. Upholding these values is the fundamental aim of the Vatican, even if one might have wished for a different response on this particular issue.

Still, the CDF document is helpful in several ways.

First, it is a very narrowly circumscribed document. It refers only to patients in the very rare condition called PVS. While some were interpreting the range of the papal allocution of 2004 to apply to all patients who were unable to eat, the CDF explicitly distinguishes between progressive conditions (such as cancer or Parkinson’s disease) and the “stable” situation of a patient in PVS.

Second, the CDF statement ratifies the views of an international group of Catholic bioethicists who in July 2004 argued that the words “in principle” in the papal allocution did not mean “exceptionless,” but rather the opposite. This is crucial because in the ordinary/extraordinary-means tradition, one cannot make an a priori exceptionless declaration that a particular treatment is ordinary. A treatment that is ordinary in one set of circumstances may be extraordinary in another. The CDF’s response and accompanying commentary declare that its teaching about feeding tubes in PVS must be located squarely within this tradition.

Third, contrary to some initial interpretations of the papal allocution of 2004, the CDF document repudiates the idea that there has been a “development of doctrine” regarding the use of life-sustaining treatments. Therefore, no matter how convoluted some readers might judge the reasoning process necessary to read this document as consistent with tradition, the CDF has explicitly denied any intention to deviate from the five-hundred-year-old tradition of allowing people to forgo extraordinary means of care. This will be very important in assessing the historical impact of the document. The tradition of withholding and withdrawing extraordinary means of care has served the community of the faithful well for centuries, providing moral principles fully applicable to a wide array of medical technologies that, while often very beneficial, bring with them the extra burden of having to decide when forgoing their use is morally sound and practically wise.

What will the immediate ramifications of this statement be for Catholic patients, physicians, and health-care institutions? PVS is a relatively rare condition. It affects roughly 1 in 10,000 people in the United States, and 1 in 50,000 in Europe. By contrast, dementia affects 1 in 100 persons in the United States, and 1 in 130 in Europe. Most other conditions that render patients unable to eat are progressive. Patients who become sick enough to need a feeding tube when they have cancer, Alzheimer’s disease, Lou Gehrig’s disease, and Parkinson’s disease, are likely to die quickly with or without a feeding tube. This explains, in part, why one can conclude that John Paul II was not euthanized by the Vatican, even according to its own strict standards, when it allowed the late pontiff to forgo a feeding tube. In the case of Alzheimer’s disease, it has proved empirically impossible to show that feeding tubes even prolong the lives of patients. By the time such patients lose the ability to swallow, so much else is wrong (and getting worse) that the tubes are likely to result in complications and not prolong life. No one should be told in any Catholic facility that on the basis of the CDF’s statement, feeding tubes are morally obligatory for all Catholics who cannot eat. Faithful to tradition, Catholics can, in the proper circumstances, judge feeding tubes extraordinary when they or their loved ones suffer from one of these much more common conditions.

Even if a patient is suffering from PVS, the church has not declared that no treatments can ever be stopped. One should note that one can only be diagnosed as having PVS after twelve months without recovery for a traumatic brain injury and after six months for nontraumatic brain injury (for example, after cardiac arrest or a drug overdose). One cannot even reach the diagnosis of PVS without spending hundreds of thousands of dollars on health care. On the way to that diagnosis, the chance of death at several junctures is much higher than the chance of survival. At any of these points it would be consistent with Catholic teaching to forgo the ventilator or dialysis or surgical procedure that would be necessary to keep the flame of hope for survival lit. I suspect that this is why PVS is five times more common in the U.S. than in Europe. Ironically, it is the American “prolife” attitude of using technology for very small chances of survival that brings with it a few extremely rare recoveries, but many more numerous deaths after protracted periods of unresponsiveness and a few patients who survive but never progress beyond PVS. I suspect that in Europe the extraordinary means of care that are necessary to bring someone to the diagnosis of PVS are much more commonly withheld or withdrawn along the way.

The CDF does not absolutely require patients who have been in PVS for years to continue tube feedings. Presuming adequate financial resources, the document offers two criteria for stopping: either the feeding tube does not work (is futile) or the patient is experiencing “physical suffering.” The former can occur if the tube itself has developed complications such as infection, bleeding, or if it has become tangled in the bowels so that the bowel tissue dies and can no longer absorb nutrients. But the CDF’s “physical suffering” criterion is puzzling. If the patient is truly in PVS, then, by definition, he or she cannot experience pain. What can physical suffering mean in this case? I can only interpret the CDF to mean: If the condition of the patient were such that a reasonable person could construe that were the patient able to experience physical suffering, this condition would occasion such suffering, then the treatment could be considered extraordinary. Presumably, this condition could mean a complication of the tube itself (such as recurrent pneumonia caused by feedings going up the foodpipe and down the windpipe), or some complication such as recurrent, deep, treatment-resistant ulcers of the skin, kidney failure, or the development of intractable seizures. Such complications need not be treated if the treatment meets standard criteria for extraordinary means. In addition, the feeding tube could be withdrawn if it were implicated in the complication (for example, causing diarrhea that caused infected ulcers, causing electrolyte abnormalities that led to seizures, etc.).

What, then, has changed? It seems to me that the proper way for clinicians, hospitals, and families to interpret the CDF statement is to understand it as saying that if a patient is in the rare state known as PVS, has not left any advance directive, is otherwise young and healthy, and the government or an insurance carrier is paying or one is independently wealthy, and if it is not reasonable to construe that the patient is suffering, and if there are no apparent complications, then, other things being equal, one cannot justify the removal of the feeding tube merely because one is morally certain that the patient cannot recover. In such a “thick” description of the circumstances, the believing community’s authoritative voice has judged that this treatment should be considered ordinary. I suspect that previously many of us would have taken a good-faith determination by the family that the patient would not want to live if unable to recover as sufficient to judge the feeding tube extraordinary. The Vatican has now declared that more justification is required.

The CDF has informed the USCCB that it need not revise the Ethical and Religious Directives for Catholic Health Care Services over this issue. Those directives state that there should be “a presumption in favor” of artificial hydration and nutrition in these circumstances. One simple way of reading the CDF document would be to read it as saying that in the case of PVS, the church really, really means a presumption in favor. It is critical for all Catholics to realize, however, that this presumption is much more readily rebutted in other, far more common conditions such as cancer, Parkinson’s disease, or dementia.

Several considerations are not treated in either the papal allocution of 2004 or the recent CDF statement. The Vatican seems most concerned (even suspicious) about third parties deciding on behalf of patients in PVS. The only way a patient could avoid third-party decisions is through an advance directive. Among the traditional criteria that could be invoked in such a directive is charity. While one might be suspicious of families deciding that a patient would not have wanted enormous amounts of time and money spent to keep her alive, the patient herself might charitably state in an advance directive that, if she were ever in PVS, she would not want the family or society spending the time and resources to keep her alive. Or the patient might invoke the traditional criterion of vehemens horror, stating that the idea of being kept alive in such a condition would be unbearable for her. Monks in the sixteenth century were allowed to make such a judgment about life without a leg and thereby refuse a life-saving amputation. The same should be true for PVS today. Even with the assurance that one would feel no pain, nobody wants to be in PVS.

Finally one must bear in mind that decisions to withdraw feeding tubes for patients in PVS are extremely rare. Patients who are in PVS are in that state because their families want to continue care. Certainly no health-care institution, Catholic or not, should require the discontinuation of tube feedings for such patients.

The final analysis in interpreting the CDF document is that the moral criteria for discontinuing tube feeding for PVS patients must meet a very high, but not absolute, standard. It should be just as clear that this does not mean that every Catholic must die with a feeding tube in place.

Read more: Letters, January 18, 2008

Related: Utmost Care, by the Editors
The Pope on PVS, by John F. Tuohey
Undue Burden? by the Consortium of Jesuit Bioethics Programs