Refusing Food and Water to Non-Dying Patients
Refusing Food and Water to Non-Dying Patients
Gian Luigi Gigli
President, International Federation of Catholic Medical Associations
Leaving Athens, returning to Sparta
The following is a statement by the head of the International Federation of Catholic Medical Associations concerning the case in the United States of Terri Schiavo, who died on Thursday, 31 March, after nearly two weeks of being refused food and water.
Now that the sad story of Terri Schindler Schiavo [has come] to an end, some reflections are urgently needed in the attempt to face the devastating tide that will inevitably wash over [Italy] too, sweeping away long-held values and violently altering the map of a people's convictions.
The symptoms of this cultural tsunami have already been sighted in the ocean of nonsense published in the past few days by authoritative opinion leaders, and affirmed with disarming ease in television talk shows.
People have said that poor Terri was in a "vegetative coma", that she no longer had a brain, that she should be "unplugged", that she was being kept alive by life-support machines, that there should be an end to aggressive medical treatment for a person terminally sick or whose condition, in any case, is irreversible.
Some have compared Terri's life to that of a vegetable, incapable of feeling any sensation or pain. There have even been television "philosophers" who have declared that hers was no longer a human life, whereas former ministers have spoken of intermediate conditions between life and death.
Authoritative scientific reviews have even fallen into the trap of sensationalism, saying that we have before us a patient with a flat brain scan, the condition seen in brain death. For such a patient there are many "masters of thought" who have been scandalized at the inhuman, invasive tubes with which they claimed the patient was being kept alive artificially, and they called for a merciful death for her "without suffering", subsequent to the suspension of food and water.
The truth of the matter
It is necessary to begin by explaining the boundaries of things, calling them by their proper name for those who, in cases such as Terri's, have only heard about them on television.
Patients in a vegetative state are not brain dead, because their brains, even if more or less imperfectly, have never ceased to function. They are not even in a coma, since they are awake and their eyes are open. Their electroencephalogram is not flat and can even alternate between phases of sleep and wakefulness.
There is no plug to unplug, for the simple reason that these patients are not connected to any machine. They are not terminally sick, given that they can survive for many years with only basic assistance (primarily, hydration and nutrition).
They are not necessarily patients who will never recover, if one considers that the definition "permanent vegetative state" has no diagnostic but solely prognostic value, merely indicating that the possibility of recovery diminishes with time.
They are not patients who feel nothing, given that the potential mentioned can demonstrate that a stimulus has reached the cerebral cortex. Although there are often no indications of further cortical processing of such a signal, there have also been well-documented scientific cases in which a rudimentary process of discrimination and recognition was nonetheless possible.
Patients in a vegetative state do not tell us whether they feel pain, but the painful stimulus reaches their brain and we do not yet know enough about the physiology of pain to be sure that the absence of evidence is proof of the absence of all pain.
Patients in a vegetative state are not all the same. The images that explore the anatomy (such as NMR) or functionality of their brains (such as PET and functional NMR) show a great variety of responses from case to case.
For these reasons too, the diagnosis of a vegetative state is far from easy and important studies show error margins superior to 30 percent, even in qualified centres.
Another myth to explode is that of the tubes through which the patient is fed. They are described as infernal devices with little respect for the dignity of the patient.
In point of fact, the insertion of a nasal-gastric tube is a common procedure and usually practised only at the initial phases of the vegetative state, whereas with regard to the PEG, it is a matter of a very well-tolerated and manageable procedure that can be handled at the patient's home by persons who are not health-care professionals. It is invisible since it is hidden beneath the patient's clothing. Some patients suffering from non-cerebral diseases have to be fed with a PEG tube for years, and this is not an obstacle to their working life or their relationships.
Lastly, we must reflect on the "beautiful death" inflicted on poor Terri, a death that has been described as serene, peaceful and devoid of suffering, caused by making an organism, defined a priori as incapable of feeling pain, die of hunger.
Actually, death from hunger and thirst is a slow agony that gradually ravages the whole organism. Patients in a vegetative state can suffer in ways we do not know, to the point that the very champions of this procedure at the same time totally sedate patients with morphine to avoid the risk of the telltale signs on their bodies of a reaction to the pain they might feel.
This is such an inhuman death that should someone inflict it on a dog, he or she would be condemned for cruelty and abuse.
Three falsehoods exposed
In order to shed a more realistic light on the vegetative state and before proceeding to examine the consequences of this disgraceful case, it is necessary to explain that the deliberate and barbaric killing of Terri Schindler Schiavo was perpetrated on a poor patient who was not even in a vegetative state.
From an examination of the films and in accordance with the opinions of distinguished American colleagues, the patient could at most be described as in a condition of minimum consciousness (MCS) or in a low-level neurological state (LLNS), capable of certain elementary movements, of rudimentary expressions and with a partial ability to swallow. In the past 10 years, this patient was denied further diagnostic investigations (such as the PET and f-NMR) and rehabilitational interventions, even to the point of being denied Communion during her days of hunger and thirst, so that no indiscreet eye might observe the suffering caused by the suspension of nutrition and hydration.
Terri Schiavo was put to death on the basis of three falsehoods.
The first is that assisted nutrition and hydration is a form of "medical treatment" and not a fundamental element (on a par with mobilization and hygiene) of basic nursing assistance.
The second lie is that Terri Schiavo had to be put to death out of respect for her own desire not to receive the "medical treatment" of assisted nutrition and hydration. This would be, therefore, a matter of respect for the principle of the patient's autonomy.
A discussion on the limits of anticipated directives go beyond the intentions of this brief article. But we cannot avoid stressing how, in this specific case, the revelation of the presumed wishes of the patient was based only on general comments in an informal conversation, dating back many years and revealed by a husband who can at the very least be suspected of having a conflict of interests and of being opposed to Terri's presumed desire as expressed by her parents and siblings.
How is it possible to base a decision concerning human life on a general conversation on nutrition by artificial means that took place some years ago? This would be judged as insufficient proof in criminal proceedings, especially when it is a matter of putting to death a woman who is indisputably innocent!
When such a conception of the patient's autonomy is subjected to criticism, those who established that Terri had to die in any case finally invoked the ultimate falsity in this sad case: they claimed that the suspension of basic assistance (hydration and nutrition) is not only justified but also obligatory, on the basis of the principles of futility, exceptionality (disproportionality) and the excessive burden it entails, on which every ethical judgment on treatment is based.
It is a pity that only at the price of falsifying the truth can a treatment be described as futile, disproportionate and excessively burdensome, when for years it has effectively fulfilled its purpose of providing nourishment that is inexpensive, requires no special machines and is well tolerated by millions of patients for the widest range of pathologies.
How can a large section of American society be in agreement with a bad husband, such as Michel Schiavo, in wishing at all costs to put Terri to death?
Seeing universal values
The Terri Schiavo affair conceals worrying truths that go beyond the specific case and acquire universal value. It is right to reflect on these tremendous truths before it is too late for our society.
It is not that hydration and nutrition are futile, but the very lives of patients like Terri that are deemed futile and meaningless.
It is not the PEG that is disproportionate, but the obligation to nurse patients whose return to "health and beauty" may not be granted.
It is not the "treatment" that is excessively burdensome for the patient, but the very life of so many persons with serious chronic disabilities, considered by our society as a burden of which we should be glad to rid ourselves.
To mask the intrinsic immorality of these conclusions, people have recourse to very dangerous digressions on the inadequate quality of life that would qualify patients in a vegetative state and those who, like Terri, resemble them.
On the basis of a final external judgment, the quality of a patient's life is deemed insufficient for the protection of life itself when the patient is unable to maintain a sufficient capacity for relations, when he or she fails to show sufficient awareness, when there is no hope of an acceptable recovery, when the patient cannot express his or her autonomous will, when he or she is unable to communicate his or her own decisions. In these conditions, the life in question is deemed no longer human, or, with more subtle sophism, we are facing a human being who henceforth lacks what are held to be the minimum prerequisites in order to qualify as a human person.
At this point, it is easy to draw conclusions and to realize why the Schiavo case unfolds bleak prospects.
First of all, [not long] after Terri's death, the same opinion groups that had clamoured for the suspension of her hydration and nutrition will demand a quicker and less painful death (without the need to inject the patient with morphine). This will be a decisive argument for the legalization of euthanasia in the U.S.A., and then, throughout the world.
Moreover, if an opulent society, such as American society, deems henceforth that assistance to the sick who have no hope is a waste of money, it is the overall degree of attention to frailty that is called into question, with irreversible damage to the principle of solidarity in assistance.
Finally, if patients in a vegetative state are to be considered human beings whose lives are henceforth not worth living, whose status and rights as human persons are no longer recognized, then this discriminatory principle can be extended to many other categories of patients who likewise lack autonomy, a life of relations, awareness, the ability to communicate their own decisions. They are the demented, the mentally-handicapped, those in prolonged comas, seriously deformed newborns.
In the name of a superior tribunal of human dignity, a discriminating regime will be set up that is in stark opposition to the Universal Declaration of Human Rights and heralds further dangerous, aberrant democratic trends. Having left Athens and humanism, they will return to Sparta and eugenic selection.
Weekly Edition in English
27 April 2005, page 10
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