The death of Terri Schiavo in 2005 marked the sad end of a three-month-long legal and political firestorm over how she should be treated. A victim of severe brain injury following a cardiac arrest, she had lain bed-bound in a nursing home for 15 years, unable to communicate or to eat. Her husband and her parents had fought for years over whether her condition had been properly diagnosed, whether she had a reasonable hope of recovery and whether she would have wanted to be kept alive this way, using a feeding tube.
For three months, her story was in the news every day. People began to ask themselves: What would I do if it were my spouse? My child? What would I want if I were the one in the bed?
Comments regarding this case from a variety of Catholic leaders raised serious questions for many people about Catholic teaching regarding end-of-life care. Media coverage of these comments, defending her right not to be “starved to death” and criticizing the motives and intentions of her husband, only amplified a sense of confusion about whether a major change in Church teaching had taken place. This confusion affected even people who work in health care.
A few months ago, for example, I received a letter from the superior of a community of the Missionary Sisters of Charity. This order, founded by Mother Teresa, ministers to the dying by running hospices for the homeless, the destitute, those dying of AIDS, poverty or drug addiction, plus all those dying alone and otherwise unwanted. Mother Superior asked me whether her community would need to change its practices in light of “new” Church teaching.
She pointed out that most dying patients stop eating and drinking at some point. She explained that, because the sisters are not trained as nurses or physicians, they are not able to use feeding tubes or intravenous treatments. But since many of the sisters came from India, they knew that one could place a needle under the skin (rather than the more skilled process of placing it in a vein) and inject fluids that could be absorbed through the tissue under the skin. Such treatment can be lifesaving for victims of diseases such as cholera, even if it causes uncomfortable swelling.
Mother Superior wanted to know if her sisters were now required, under pain of mortal sin, to do this for all of their dying patients who stopped eating.
I shudder to think that these sisters might have come to believe that their saintly foundress, Mother Teresa, had sinned by not having provided these interventions for her dying poor ones in Calcutta!
In fact, this sister had misinterpreted recent Church statements. The Church does not teach that all dying patients require feeding tubes or intravenous fluids. Sadly, this sort of misinterpretation seems to be widespread. It is critically important for all Catholics— patients, their families, health-care professionals and clergy—to understand that Catholic teaching about life-sustaining treatments has not changed in any fundamental way. Long before anyone used the term “bioethics,” Catholicism was teaching that people can decline the use of medical treatments under certain conditions.
Extraordinary Means of Treatment
The Church has always taught that suicide and euthanasia are morally wrong. The Church, however, has never required that a person do everything medically possible to prolong life. This tradition is very old. In the fourth century A.D., St. Basil the Great wrote in his Long Rules (Q. 55), “Whatever requires an undue amount of thought or trouble or involves a large expenditure of effort and causes our whole life to revolve, as it were, around solicitude for the flesh must be avoided by Christians….Therefore, whether we follow the precepts of the medical art or decline to have recourse to them…we should hold to our objective of pleasing God and see to it that the soul’s benefit is assured, fulfilling thus the Apostle’s precept: ‘Whether you eat or drink or whatsoever else you do, do all to the glory of God’” (1 Corinthians 10:31).
In the 16th century, the Church formalized its teaching that there is a distinction between “ordinary” and “extraordinary” means of care. These words are technical theological terms. People are, therefore, easily confused because these terms do not mean the same thing that they do in everyday language.
In theological language, “ordinary” really means obligatory and “extraordinary” really means optional. This is similar to the way we talk about “extraordinary” ministers of the Eucharist. Most eucharistic ministers are good (but not necessarily “extraordinary”) people. Calling them “extraordinary” means that the pastor has the option to use them to help distribute Holy Communion.
Similarly, in medical ethics, “extraordinary” care indicates optional care—interventions that go beyond what the faithful can be required to do in order to be good stewards of their bodies. Traditionally, this has been judged to be the case if the intervention is too expensive, not likely to work, is associated with great suffering or might save the patient’s life at too great a psychological, spiritual or interpersonal cost.
Under conditions like these, declining an intervention (whether surgery, medicine, or even food and water) was not considered suicide. Thus, Dominican friar Francisco de Vitoria (died 1560) wrote, “I would say that if the depression of spirit is so low and there is present such consternation in the appetitive power that only with the greatest of effort and as though by means of a certain torture can the sick man take food, right away that is reckoned a certain impossibility, and therefore he is excused…” (De Temperantia, #1).
In 1957, Pope Pius XII applied this tradition to the use of ventilators: “But normally, one is held to use only ordinary means—according to circumstances of persons, places, times, and culture—that is to say, means that do not involve any grave burden for oneself or another. A more strict obligation would be too burdensome for most men and would render the attainment of the higher, more important good too difficult. Life, health, all temporal activities are in fact subordinated to spiritual ends. On the other hand, one is not forbidden to take more than the strictly necessary steps to preserve life and health, as long as he does not fail in some more serious duty…” (The Pope Speaks, 4:4, 1958).
At the end of the 20th century, the Catechism of the Catholic Church upheld this tradition: “Discontinuing medical procedures that are burdensome, dangerous, extraordinary, or disproportionate to the expected outcome can be legitimate; it is the refusal of ‘overzealous’ treatment. Here one does not will to cause death; one’s inability to impede it is merely accepted. The decisions should be made by the patient if he is competent and able or, if not, by those legally entitled to act for the patient, whose reasonable will and legitimate interests must always be respected” (#2278).
Regarding artificial hydration and nutrition, the Ethical and Religious Directives for Catholic Health Care Services in the United States have not been changed; there has been no instruction from the Vatican to change them. TheseDirectives (United States Conference of Catholic Bishops, fourth edition, 2001) state: “There 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 to the patient” (#58).
Pope John Paul II’s Statement
On March 20, 2004, Pope John Paul II addressed participants at a four-day conference sponsored by the Pontifical Academy for Life and the International Federation of Catholic Medical Associations. He addressed the issue of artificial hydration and nutrition in patients suffering from the neurological condition known as the “persistent vegetative state.” He said, “I feel an obligation to reaffirm vigorously that the intrinsic value and the personal dignity of every human being does not change no matter what the concrete situation of his life.” He later said that a human being “never becomes a ‘vegetable’ or an ‘animal.’”
If patients are not dying, he said, artificial nutrition and hydration must 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.”
Unfortunately, media reports about this statement have inadvertently contributed to the confusion about whether using feeding tubes is morally obligatory. News stories amplified hysteria about this very technical speech. His words should not be interpreted out of context.
To help provide that context, in July 2004, an international group of Catholic scholars met to discuss the use of artificial hydration and nutrition in a variety of medical conditions, particularly in light of the papal speech. These faithful, orthodox scholars, convened by the Canadian Catholic Bioethics Institute in Toronto, reached the following conclusions:
“The papal speech needs to be understood in the context of the Catholic tradition. The words ‘in principle’ do not mean ‘absolute’ in the sense of ‘exceptionless’ but allow consideration of other duties that might apply. Therefore, what the papal statement really means is that, for permanently unresponsive patients who are not otherwise dying, tube feeding should be presumed to be ordinary and proportionate (and as such, morally obligatory) unless its use would conflict with other grave responsibilities or would be overly burdensome, costly or otherwise complicated.” (The complete text of this statement has been published in the National Catholic Bioethics Quarterly 4 , pp. 773-82.)
It is a common misconception of Catholic tradition that popes can say whatever they want and it becomes dogma. In reality, popes are also bound by our common tradition, in the trust that this tradition, through the work of the Holy Spirit, bears the truth that popes are called to expound. Popes may apply this tradition and speak to new issues, clarify aspects of the tradition that have raised new doubts or extend the body of dogma beyond what tradition has previously addressed. But they cannot jettison that tradition. Thus, the international colloquium, as described above, interpreted the papal speech in the light of that tradition.
To provide further context, it is critical to note that the papal speech of March 2004, while raising issues of concern regarding the care of all patients, was delivered at the end of a conference regarding the care of persons in the persistent vegetative state. (I prefer the term used by the Australians, “post-coma unresponsiveness,” and will use it in the rest of this article).
This condition was the focus of that speech. It is the condition from which Terri Schiavo suffered. It is a very rare neurological condition in which a person starts in a coma that is often caused by inadequate cardiopulmonary resuscitation for someone whose heart has stopped. In such cases, after six months of intensive care, patients may come off the ventilator, be able to open their eyes and breathe on their own, have cycles of wakefulness and sleep, plus perform reflexive actions such as yawning. But the severe brain damage causes a total inability to interact with other people, speak, understand or perform purposeful movements such as eating or walking.
Such persons, if treated with a feeding tube and intensive nursing care, can sometimes live for months or years. When they die, it is typically due to complications of feeding-tube treatment, such as pneumonia caused by food placed in the stomach going up the esophagus (foodpipe) and down into the lungs.
Thinking about using feeding tubes in a rare condition such as post-coma unresponsiveness is very different from thinking about using feeding tubes in more common diseases such as cancer, AIDS, Alzheimer’s disease, Lou Gehrig’s disease or Parkinson’s disease. Tube feeding in these types of patients will often result in great burden, no net benefit and multiple complications.
In very many such cases, tube feeding will meet the criteria by which it could be considered extraordinary or morally optional. These diseases continue to progress and get worse—no matter what treatment is offered. Complications such as pneumonia are much more common when feeding tubes are used for such patients.
Patients with dementia sometimes pull the tubes out and would need to be restrained in order to be fed. In fact, in these conditions it has even been difficult to show that the use of feeding tubes actually makes the patients live longer. Clearly, in many such cases, the burdens of treatment can be judged disproportionate with respect to the benefits, and the treatment could therefore be judged extraordinary or morally optional.
The main issue in the case of Terri Schiavo was actually not the feeding tube itself but rather who should decide whether she should have the feeding tube. She had left no “advance directive” (such as a living will or a durable power of attorney for health care) stating what she would have wanted done in such circumstances or who should make medical decisions on her behalf. Deciding what to do for her would have been easier if she had left such a directive.
Broadly speaking, the Catholic Church supports advance directives, provided these are executed in a way that is consistent with Church teachings. In fact, if a person, motivated by a charitable desire to relieve others of the burdens such care might impose, executes an advance directive that states that he or she would not want artificial hydration and nutrition if ever in a state of post-coma unresponsiveness, then even the most conservative of Catholic moralists would conclude that the treatment should not be given.
The Church’s deepest worry about patients like Schiavo is that they—or even patients who are not as debilitated as she was—will come to be considered mere burdens. The Church worries that their dignity will be impugned if they are thought of as “vegetables.”
It is indeed a failure of charity if we decide not to provide medical treatment for patients merely because we don’t consider them worthy of our time and resources. But this does not mean that we can never act with a spirit of profound Christian charity and humility, fully respecting the dignity of dying persons, if we decide that it is best to let them return to their Maker. We can never kill patients, but we can, under certain conditions, allow them to die.
Debate persists within the Church about the conditions under which family members can be allowed to determine that the provision of tube feeding to persons who suffer from post-coma unresponsiveness represents “extraordinary means.”
This debate reflects ongoing questions about the symbolic nature of feeding, whether someone in an unresponsive state can be said to suffer and whether it is ever possible to construe the intentions of a third party discontinuing life-support for a person in that state as anything other than an intention to make the person dead.
These focused debates about a specific treatment for a rare condition should not, however, lead anyone to conclude that there has been any fundamental change in Catholic teaching about life-sustaining treatments, even though the public discussion surrounding the Schiavo case could understandably have led many to think that.
To conclude, the Church teaches that:
- We should never euthanize patients or assist them in suicide;
- Sometimes certain life-sustaining treatments (including feeding tubes) are “extraordinary” (morally optional) and can be withheld or withdrawn;
- Special care must be taken in determining that feeding tubes are extraordinary, particularly if the patient suffers from a rare neurological condition called post-coma unresponsiveness.
Pope John Paul II’s Own Choice About Medical Care
One should need little more proof that the Catholic tradition of forgoing extraordinary means still endures than the fact that Pope John Paul II (now Saint John Paul II) himself declined hospitalization in his final illness. He forswore multiple life-sustaining treatments (including a permanent feeding tube) in a manner taught consistently by the Church, from St. Basil of Caesarea to Mother Teresa of Calcutta.
As Christians, we consider human life a precious gift. But we always recognize, humbly, that the human body is finite and we look forward to the gift of eternal life promised by our Savior.
I often help families make decisions about whether to continue various life-sustaining treatments, including feeding tubes, for their loved ones. These decisions are never easy. We naturally associate providing food and water with what it means to care.
But there is a big difference between deciding not to use a feeding tube in a reversible condition, such as a food pipe damaged by the swallowing of a caustic substance, and deciding not to place a feeding tube in someone at the very end stages of a progressive and fatal disease. Still, families worry.
A colleague of mine asked for my advice a few months ago as her father was dying of cancer. She felt helpless because he had stopped eating. But she knew that if she fed him it would go “down the wrong pipe.”
I reminded her that the bodies of such patients begin to shut down and that the food, even if absorbed, would fail to nourish. I pointed out that putting food into a tube in the stomach carries little of the intimacy of sharing a meal. I reminded her that patients cannot even taste tube feeding
and do not feel a full stomach.
I explained that hospice nurses say it is better to die a little dehydrated, so that the lungs do not fill with fluid. Still, my colleague needed to do something. I advised her to take a demitasse spoon, dip it in honey and put it in his mouth three times a day. She later told me that doing this had been among the most memorable parts of her father’s dying—for her and for her family.
I like to think this was a little like the death of Saint Francis, who refused “extraordinary” treatment from his doctors and had stopped eating. However, Lady Jacoba, his friend, had come from Rome with his favorite almond cookies. He ate little bits of these cookies from her hand before he died. Perhaps it was a foretaste of what we are all promised in Christ Jesus.
Daniel Sulmasy, MD, PhD, MACP, has expertise in general internal medicine with a particular interest in end‐of‐life care. Dr. Sulmasy is a member of the Presidential Commission for the Study of Bioethical Issues. An ethicist and a practicing physician, Dr. Sulmasy studies end‐of‐life decision making, ethics education and spirituality in medicine.