Monday, July 26, 2004

The Pope As Ignorant Schoolboy

I Respond To Fr. Tuohey's Commonweal Article

Amy Welborn linked to an article by Fr. John Tuohey published in last week's Commonweal magazine titled "The Pope On PVS", in which he critiques the Holy Father's teaching regarding care of PVS patients as expressed in his Address to the Participants of the International Congress on Life Sustaining Treatments and the Vegetative State. Fr. Tuohey's article begins in this vein:
In brief, you propose to show there is a moral obligation to maintain nutrition and hydration, “even artificially administered,” for the PVS patient, saying that doing so is “necessarily ordinary and proportionate.” You affirm that this is “not a medical act,” but a “natural means of preserving life.” In short, you say it is required whenever it works to maintain life.

While we are pleased to accept your proposal, we would like to bring up some issues to which you will want to pay particular attention as you continue your work. Our brief comments below will refer only to the 1980 Declaration on Euthanasia, the most authoritative statement by the church to date on the topic; the 1995 Pontifical Council’s Charter of Health-Care Workers; and some older traditional references that represent the long-held moral tradition on this subject. Other sources will, of course, also need to be explored as you continue your work.

As this is an issue of great moment today, and Fr. Tuohey's article is so problematic in certain respects, I felt obliged to reply.

To the Editor:

Fr. Tuohey's article "The Pope on PVS" is problematic on several levels, and requires rebuttal. Firstly, though this is perhaps a concern of style rather than substance, I cannot pass over the condescending tone in which the article is written. Had I received a similar letter from my advisor or thesis committee during my own graduate work, I would have immediately sought new ones, who demonstrated the ability to offer criticism without being patronizing and insulting. The Holy Father has demonstrated more than adequate knowledge of the Church's moral tradition in several encyclicals. It is quite certain, for example, that the Holy Father is familiar with the distinction between probabilism and tutiorism. It is especially offensive that a priest should address the Vicar of Christ as though he were an ignorant schoolboy.

Apart from the tone, however there are even more serious difficulties with Fr. Tuohey's article. The first is his statement that the "1980 Declaration on Euthanasia" and the "1995 Pontifical Council’s Charter of Health-Care Workers" represent the most recent authoritative teaching regarding the care of PVS patients. But, of course, he ignores the teaching authority of the Holy Father's address, which certainly constitutes the most recent pronouncement of Church authority on the issue. While the Holy Father's address does not rise to the level of an encyclical, it nonetheless represents the Holy Father articulating and explicating what has previously been said by the Church. I would compare it to the pronouncement of another pope on another moral issue, Pius XII's address to the Italian Catholic Union of Midwives in 1951. Pius XII's address was an elaboration and reinforcement of Catholic teaching on conjugal morality, built on the work of his predecessors. It is now considered part of authoritative papal teaching, and is standard reading for any student of Church teaching on the theology of marriage and sexuality. So here John Paul II is enlarging upon previous pronouncements on life issues. This is the exercise of the Ordinary Magisterium, and as such must be considered authoritative. The Holy Father's pronouncement last March must be taken as part of the data from which moralists reason, and not merely another theological opinion.

Fr. Tuohey takes issue with the Pope's evaluation of "the clinical reality of PVS", in which he stated "that PVS is not a diagnosis, but 'only a conventional prognostic judgment.'" Fr. Tuohey then opines that "PVS refers to a medical condition, defined by specific clinical indications..." But, in fact, as I wrote in last January's Crisis Magazine, the diagnosis of PVS is notoriously difficult and unreliable. Indeed, a 1996 study, "Misdiagnosis of the Vegetative State", published in the British Medical Journal discovered that the diagnosis of PVS was inaccurate 43% of the time. They found that the misdiagnosed patients had severe communication problems as a result of their disabilities, but, with the proper clinical measures, "nearly all were able to communicate...some to a high level." They concluded that:
The vegetative state needs considerable skill to diagnose, requiring assessment over a period of time; diagnosis cannot be made, even by the most experienced clinician, from a bedside assessment [emphasis is mine]... Recognition of awareness is avoid inappropriate approaches to the courts for a declaration for withdrawal of tube feeding.

The difficulty in diagnosing PVS, and the widespread errors in making the diagnosis, has led many leading hospitals, such as the Northwestern University Rehabilitation Institute, to routinely re-assess patients referred to them as PVS.

Furthermore, the criteria themselves for a diagnosis of PVS are highly problematic. Cindy Province, MSN, of the Bioethics Center of St. Louis, has criticized the reliance for a diagnosis of PVS on judgments regarding a patient's "thought" or "awareness", things which are not medically measurable. One speaker at the Rome conference, Dr. D. Alan Shewmon, observed that "the PVS literature suffers from an oversimplified notion of 'consciousness' and from conflating consciousness with responsiveness." Province also observes that doctors are realizing that "consciousness is a continuum, not an all-or nothing phenomenon. In general terms, human brains aren't light bulbs with an 'on' and 'off' switch, but instead are more like irons, with 'warm' settings all the way up to 'hot'."

Fr. Tuohey also criticizes the Pope's understanding of prognosis in evaluating artificial nutrition/hydration for PVS patients. He seems to take for granted a moral certitude that PVS patients will almost certainly never recover. However, the difficulty and inaccuracy of diagnosis makes reliable prognosis all the more problematic. There is ample empirical evidence that people supposedly diagnosed as PVS recover with an unsettling frequency: the cases of Rus Cooper-Dowda and Sgt. Richard Mack are recent examples. Perhaps the most chilling recent example of a supposed PVS patient recovering is Kate Adamson, who, once diagnosed as PVS, had her feeding tube removed. But she was in fact fully conscious, aware of what was going on around her:

I could see and hear everything going on around me, and I had no way... of communicating with anyone. I knew what I wanted to say.  I had -- I was completely paralyzed. I had no way of communicating at all. When the feeding tube was turned off for eight days, I was -- thought I was going insane. I was screaming out [in her mind] "don't you know I need to eat." ... Michael [Schiavo] on national TV [the infamous Larry King interview last October] had mentioned last week that it's a pretty painless thing to have the feeding tube removed. It is the exact opposite. It was sheer torture...

The tenuousness of the PVS diagnosis, the consequent uncertainty regarding the prognosis of PVS patients, and the fact that a disturbing number of supposed PVS patients seem to "recover", has led some doctors, especially those who regularly treat brain-injured patients, to describe PVS as a "meaningless diagnosis". Given these difficulties, it strikes me as almost absurd for Fr. Tuohey to speak of "moral certainty" in this regard. If there is uncertainty surrounding whether or not a patient is PVS, and uncertainty surrounding whether or not such a patient can recover, it makes no sense to assert "moral certainty" in making a decision to withdraw treatment. Under these circumstances, and given the overriding nature of the dignity of human life, the only responsible position to take is the tutioristic ["more cautious"] approach Fr. Tuohey so readily dismisses.

In asserting Gerald Kelly's conclusion regarding the withdrawal of nutrition and hydration from patients in "terminal coma". Fr. Tuohey either is using sloppy language or is engaging in semantic sleight of hand. The PVS condition (when it has actually been accurately diagnosed), is not what would ordinarily be called "terminal", that is, approaching death within a reasonably foreseeable amount of time. The PVS condition is not a disease process which in se causes death. PVS patients can and frequently do live for years in that condition, if they are given proper care. The proper care required of PVS patients is normally quite minimal, and does not require hospitalization: ensuring sufficient food and water, regular turning to prevent bedsores, and basic hygiene. This basic level of care can be provided by any nursing home. When PVS patients do die, it is usually as a result of some secondary disease or trauma. To apply the diagnosis "terminal" to PVS patients is simply unwarranted.

Hence the sleight of hand employed by Tuohey in defining terminal as "a condition from which he or she was unlikely to recover." Surely Fr. Tuohey does not mean this? For there are many conditions from which a person will not recover, but no reasonable person would call "terminal". For example, Down's Syndrome is congenital, and no one "recovers" from it. Is Down's thereby a "terminal" condition, which could justify the withdrawal of food and water from those afflicted with it? Congestive Heart Failure is a degenerative condition from which patients do not recover. Indeed, it can even be called "terminal", because eventually it will lead to death, and the only cure is a heart transplant Would Fr. Tuohey argue that a diagnosis of CHF would justify the withdrawal of food and water from its sufferers? Fr. Tuohey's definition of the "terminal" condition provides easy justification to end the lives of all manner of patients.

Fr. Tuohey also implies that the use of a feeding tube to supply nutrition and hydration to PVS patients may be unduly burdensome, and therefore licitly denied. He even quotes Pope John Paul's use of phrases like “therapeutic tyranny,” and "artificially prolonged agony". But if Fr. Tuohey is referring to the Holy Father's remarks in his 1992 "Address to An International Congress on the Care of the Dying", it would seem that Fr. Tuohey is taking the Pope's remarks out of context, for they in fact do not signify what Tuohey implies. The Pope did in fact refer to "'aggressive therapeutic care' which refers to the use of treatments which are particularly wearing and burdensome for the sick person, condemning him or her in fact to an artificially prolonged agony." [emphasis is mine] But he prefaced this remark by reiterating the CDF's 1980 Declaration On Euthanasia:
Nothing and no one can in any way permit the killing of an innocent human being, whether a foetus or an embryo, an infant or an adult, an old person, or one suffering from an incurable disease, or a person who is dying. Furthermore, no one is permitted to ask for this act of killing, either for himself or herself or for another person entrusted to his or her care, nor can he or she consent to it, either explicitly or implicitly. Nor can any authority legitimately recommend or permit such an action. [emphases mine]

Furthermore, he followed his remark about "artificially prolonged agony" with this statement, also from the CDF's Declaration:
When inevitable death is imminent in spite of the means used, it is permitted in conscience to take the decision to refuse forms of treatment that would only secure a precarious and burdensome prolongation of life, so long as the normal care due to the sick person in similar cases is not interrupted."

John Paul's statement, then, was made in the context of patients who are imminently dying, for whom medical treatment will no longer avail. As I have stated above, PVS patients cannot be considered "terminal" or in danger of imminent death. Furthermore, the Pope clearly has in mind what most people would regard as "treatment": surgery, medications, etc. There is nothing in the Pope's statement which could be construed as applying to the withdrawal of nutrition and hydration from PVS patients. Indeed, I would argue that the Pope's 1992 address, elaborating on the CDF Declaration, when taken in conjunction with his remarks last March, strongly indicate that authentic Catholic teaching cannot be interpreted as permitting the withdrawal of nutrition and hydration from PVS patients.

And the fact is that use of feeding tubes for PVS patients cannot reasonably be considered "unduly burdensome". The percutaneous gastrostomy tube (PEG) is most commonly used in PVS patients. It consists of a plastic tube inserted directly into the stomach through the abdominal wall and sutured into place. Once surgical wound has healed, it is a stable and low-risk device. This method has been in use for nearly a century, and cannot by any reasonable stretch be called "high-tech", and is considered a minimally invasive measure. As long as proper hygiene is maintained (a basic nursing task), it presents very minimal risk of complication. Furthermore, it normally occasions little to no discomfort in the patient. Many people are misled by the general fear of "tubes" to think that the use of the PEG is more burdensome than it really is. Indeed, in the treatment of the various forms of dysphagia, procedures even more invasive than the PEG tube are routinely tolerated. Why would a low-tech intervention such as the PEG tube be considered "unduly burdensome" in PVS patients, but even more aggressive treatments be accepted in otherwise "normal" cases? It would seem that for some, the PVS patients are considered somehow less worthy or deserving than others.

Finally, Fr. Tuohey's discussion of such things as "basic" or "normal" care reflects a shift in the thinking and language about the place of food and water in the overall care of a patient. Twenty to thirty years ago, no clinician would have classified food and water as "treatment". They were considered part of the routine care which were given to all patients. But as Cindy Province points out in her essay "Hungering and Thirsting After Righteousness: Providing Nutrition and Hydration to Patients in the Persistent Vegetative State", there has been a redefinition of food and water as "treatment" by a growing number of clinicians and ethicists. But, Province points out, the actual arguments in favor of this redefinition are "relatively weak." Fr. Tuohey appears to have adopted this redefinition, saying that whether intervention is justified or not depends not on whether it achieves its purpose, but on "its ability to offer what McFadden called 'the sound hope of providing benefit'". Of course, the question Tuohey begs is "what benefit does one expect food and water to provide?' The answer is that no reasonable person would expect that food and water would have some kind of "benefit", in terms of producing a cure. They are simply the fundamental prerequisites of maintaining life. If we are going to label food and water as treatment, we may as well define providing sick people with shelter from the elements as such. But no one, at least as of today, is advocating exposing PVS or terminally ill patients, because we implicitly understand that shelter, too, is one of the basic prerequisites of maintaining life.

Indeed, underlying Fr. Tuohey's position, and that of many who advocate removing food and water from PVS patients, is a further redefinition of what constitutes "futile" treatment. It is a commonplace of medical ethics, as well as Catholic teaching, that one is under no obligation to continue, and may indeed be obliged to withdraw, treatment that is "futile." A treatment has typically been considered "futile" if it has no benefit or desired effect whatsoever. Thus food has not been considered treatment because no one expects food to have any "direct curative effect". Furthermore, Province explains, in PVS patients tube feeding can be considered effective because it "clearly achieves the objective of maintaining a good nutritional state." But this kind of common-sense thinking has been rejected by much of the medical community:
...This view has been largely replaced by a more general view of the nature of nutrition as treatment... in that it has not enabled the patient to recover from his underlying condition.

Now, since food and water, redefined as treatment, do not help the patient to recover from his underlying condition, it can be labeled as "futile." Having deemed feeding the patient, by this sleight-of-hand, as "futile", it is a short step to justifying its withdrawal. By means of these redefinitions, Fr. Tuohey and others have provided those want to help the sub-functional to depart this life a little more quickly with an infinitely fungible, increasingly meaningless and arbitrary set of boundaries within which to do so.

The Holy Father, in his address last March, demonstrated that he has a very sound grasp of the current clinical realities in dealing with PVS patients. Furthermore, when taken in context, his remarks are quite clearly emerging from the magisterial teaching on caring for the sick and dying that the Church has articulated both recently and historically . Finally, analysis of Fr. Tuohey's remarks, as well as its implicit assumptions, reveals that they rely on a misreading of the authoritative pronouncements of the Church, as well as on certain dubious trends in contemporary bioethics. Perhaps it is he who needs to exercise "greater care" in his "use of sources".