Burdensome: The Patient Or The Treatment?

Recently, a long-time supporter of American Life League mentioned her concern about the manner in which her state’s Catholic bishops were using the word “burdensome” to discuss what is and is not required for treating a patient whose life is nearing the end. I became intrigued and looked into this matter, taking the opportunity to compare a Florida Catholic Conference (FCC) “position paper,” titled “Issues in Care for the Dying,” with the Vatican’s Declaration on Euthanasia.

The FCC’s document is, in fact, a reprint of Section 5 of the U.S. Conference of Catholic Bishops’ Ethical and Religious Directives for Catholic Health Care Services, issued in 2001. Section 5, likewise titled “Issues in Care for the Dying,” states in part,

The truth that life is a precious gift from God has profound implications for the question of stewardship over human life. We are not the owners of our lives and, hence, do not have absolute power over life. We have a duty to preserve our life and to use it for the glory of God, but the duty to preserve life is not absolute, for we may reject life-prolonging procedures that are insufficiently beneficial or excessively burdensome. Suicide and euthanasia are never morally acceptable options.

The task of medicine is to care even when it cannot cure. Physicians and their patients must evaluate the use of the technology at their disposal. Reflection on the innate dignity of human life in all its dimensions and on the purpose of medical care is indispensable for formulating a true moral judgment about the use of technology to maintain life. The use of life-sustaining technology is judged in light of the Christian meaning of life, suffering, and death. Only in this way are two extremes avoided: on the one hand, an insistence on useless or burdensome technology even when a patient may legitimately wish to forgo it and, on the other hand, the withdrawal of technology with the intention of causing death. (emphasis added)

On the one hand, it is clear that the USCCB is not endorsing any act of passive or active euthanasia. By the same token, the first paragraph quoted above could be interpreted by the wrong person in a way that could lead to the premature death of a patient. When adverbs such as “insufficiently” or “excessively” are used, personal interpretation enters the picture. Such words, if construed improperly, can lead to some very bad outcomes.

By contrast, the second paragraph is quite clear in teaching that the patient can forego this or that technological intervention if he or she deems it to be too little too late. That is a completely different question than the previous one and engages the patient in a decision-making capacity.

The 1980 Vatican Declaration on Euthanasia also uses the word burdensome

It is also permissible to make do with the normal means that medicine can offer. Therefore one cannot impose on anyone the obligation to have recourse to a technique which is already in use but which carries a risk or is burdensome. Such a refusal is not the equivalent of suicide; on the contrary, it should be considered as an acceptance of the human condition, or a wish to avoid the application of a medical procedure disproportionate to the results that can be expected, or a desire not to impose excessive expense on the family or the community. – 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. In such circumstances the doctor has no reason to reproach himself with failing to help the person in danger. (emphasis added)

The Vatican does not resort to adverbs that must be subjectively interpreted, but rather makes it clear that there is such a thing as a “technique” that cannot be forced on the patient because it is either risky or could be burdensome (by causing pain or in other ways) for the patient.

Further, as the Vatican unambiguously teaches, the onset of death does provide a patient with the ability to say “no thanks” to treatment. The Vatican wisely does not mention the provision of nutrition and/or hydration as a form of treatment.

Though it is popular in today’s culture to consider tube feeding and hydration as “treatment,” that is not at all what nutrition and hydration are. The word “treatment” cannot be confused with the provision of nutrition and hydration. However, there are situations wherein the provision of either by tube can cause agony or the body can reject it. If such is the case, the tube cannot be used.

Our Florida supporter’s concern regarding the use of the word burdensome and how that might be interpreted is valid.  We reflect back to the FCC’s statements prior to Terri Schindler Schiavo’s death on March 31, 2005. Let us never forget that  Terri was starved to death. When addressing the Schiavo case in February 2005, the FCC issued a public statement declaring, 

The Catholic community begins discussions regarding the withdrawal and withholding of artificial nutrition and hydration with a presumption in favor of their provision. However, when the burdens exceed the benefits of providing them, they may be withdrawn or withheld. We note that what is too burdensome for one person may not be too burdensome for another. …We oppose euthanasia. While withdrawal of Terri Schiavo’s nutrition and hydration will lead to her death, if this is being done because its provision would be too burdensome for her, it could be acceptable. If it is being done to intentionally cause her death, this would be wrong. (emphasis added)

That word burdensome has a connotation in the FCC’s Schiavo statement that is, at best, confusing and, at worst, a literal suggestion that if Terri’s guardian, her husband, Michael Schiavo, claimed that tube feeding was a burden for Terri, then, indeed, starving her to death would not be defined as an act of killing. Remember, Terri could not explain to her caregivers what she felt about the tube feeding; she was unable to speak, so someone else had to make the decision. What disturbed me about this in February 2005 is even more disturbing now.

The FCC published its reprint of Section 5 of the USCCB document in January 2007, nearly two years after Terri’s death. Section 5 also states in part, 

The USCCB Committee on Pro-Life Activities’ report, in addition, points out the necessary distinctions between questions already resolved by the magisterium and those requiring further reflection, as, for example, the morality of withdrawing medically assisted hydration and nutrition from a person who is in the condition that is recognized by physicians as the “persistent vegetative state” (PVS). (emphasis added)

Why did the FCC reprint this statement in 2007, when the magisterium had already addressed the question of withdrawing nutrition and hydration? In 2004, one year prior to Terri’s death, Pope John Paul II, speaking to participants in an international congress titled “Life-Sustaining Treatments and Vegetative State,” declared,   

I should like particularly to underline how the administration of water and food, even when provided by artificial means, always represents a natural means of preserving life, not a medical act. Its use, furthermore, 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.

The obligation to provide the “normal care due to the sick in such cases” (Congregation for the Doctrine of the Faith, Iura et Bona, p. IV) includes, in fact, the use of nutrition and hydration (cf. Pontifical Council “Cor Unum,” Dans le Cadre, 2, 4, 4; Pontifical Council for Pastoral Assistance to Health Care Workers, Charter of Health Care Workers, n. 120). The evaluation of probabilities, founded on waning hopes for recovery when the vegetative state is prolonged beyond a year, cannot ethically justify the cessation or interruption of minimal care for the patient, including nutrition and hydration. Death by starvation or dehydration is, in fact, the only possible outcome as a result of their withdrawal. In this sense it ends up becoming, if done knowingly and willingly, true and proper euthanasia by omission.

Note, please, that Pope John Paul II is unambiguous in his pronouncement, reiterating fundamental Catholic teaching on a question that was soon to become the focus of a heated national debate, during which many grieved and wept as Terri died.

Then, in August 2007, the Vatican Congregation for the Doctrine of the Faith repeated this teaching when it issued its “Responses to Certain Questions of the United States Conference of Catholic Bishops Concerning Artificial Nutrition and Hydration”: 

First 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?

Response: Yes. The administration of food and water even by artificial means is, in principle, an ordinary and proportionate means of preserving life. 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 this way suffering and death by starvation and dehydration are prevented.

Second question: 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?

Response: No. A patient in a “permanent vegetative state” is a person with fundamental human dignity and must, therefore, receive ordinary and proportionate care which includes, in principle, the administration of water and food even by artificial means.

Such statements exemplify the sort of clarity so desperately needed by today’s Catholic families, not to mention citizens of all faith persuasions. The Vatican has set the standard.

I wish to publicly assure our American Life League supporter that we agree with her concerns. This is why we encourage the FCC and, indeed, all state Catholic conferences, as well as the USCCB itself, to imitate this precision in the language they use in publications designed to help people understand the complexity of end-of-life care in today’s age of medical cost cutting and ethical word games.

Such publications must remove any ambiguity, clearly reflect Vatican teaching and use language that cannot be perverted to mean what is not intended: the premature death of a patient who is viewed by others as burdensome.