In the spring of 2005, Pope John Paul II and Theresa Schindler Schiavo died within three days of each other. The pope’s death was held up as a Christian model; Ms. Schiavo’s was a flashpoint of moral and ecclesial turmoil. Terri Schiavo was 41 years old, had been in a so-called persistent vegetative state for 15 years and was being cared for in a hospice in Florida. About two weeks before her death, in the midst of a highly public and bitter family feud about her fate, tubes providing artificial nutrition and hydration were removed from Terri Schiavo. This action was taken at the decision of her husband, Michael Schiavo, and over the objections of her Catholic parents, Robert and Mary Schindler. It followed review by 20 judges in nine courts and six decisions of the U.S. Supreme Court not to intervene. As Terri Schiavo neared the end of her life, Catholics, including bishops and Vatican representatives, hurled accusations of murder at Michael Schiavo, the courts involved and participating medical personnel. After Schiavo’s death, family members continued to argue over funeral and burial arrangements, ultimately holding separate ceremonies to which the opposite side was not invited.
John Paul II was 84 and suffered from Parkinson’s disease, but entered a steep decline only about two months before his death. Vatican reports indicated that he was conscious as death approached, aware of close associates who accompanied him with prayer and able to accept with faith that the end of his life and suffering were at hand. The Catholic faithful gathered under his window and around the world to remember his life and attend his passing. A nasal feeding tube had been inserted a few days before his deathand at the height of the controversy in the United States over the Schiavo case. Final reports did not confirm whether that tube was still in place at the time of his death, but either he or his caregivers apparently decided against initiating ventilator support in the face of the failure of his heart, lungs and other major organ systems. Soon after the pope’s death, Catholics and many others around the world joined in commemorating this major 20th-century religious figure, images of whose funeral were transmitted around the world, and who was remembered in prayer at religious services in many cultures and faith traditions.
According to the Vatican’s Declaration on Euthanasia (1980), Life is a gift of God, and on the other hand, death is unavoidable. Thus we should be able to accept it with full responsibility and dignity. It is true that death marks the end of our earthly existence, but at the same time it opens the door to immortal life. In addition to skilled medical care, the dying person needs love, the human and supernatural warmth with which the sick person can and ought to be surrounded by all those close to him or her, parents and children, doctors and nurses.
It is unfortunate that the life of Terri Schiavo ended as a source of division in her family, church and society. It is also unfortunate that the decision to withdraw artificial nutrition and hydration did not, in her case, lead to a more nuanced discussion of the meaning of end-of-life care. It should have been an opportunity for Catholic leaders to take a clear stand on the importance of family and community support, the role of interpersonal and spiritual values in defining a worthwhile human life and the wisdom of placing technologically supported end-of-life care within a holistic perspective on life and death, including solidarity and justice in providing basic health care to all sectors of society. Indeed, all these values are key to the legacy of John Paul II and to Catholic bioethics.
Advanced medical technologies can often be of use in curing or alleviating illness, relieving suffering and delaying death. But as Catholic moral tradition recognizes, not all technologies are equally appropriate and useful, and not all need be used by persons who are ill or approaching the end. The terms ordinary and extraordinary means of life support are used to differentiate between obligatory and optional treatment. As the Declaration on Euthanasia noted 25 years ago, the terms proportionate and disproportionate may now be preferable. The key point in the distinction is that various technologies cannot simply be classified according to type; instead they must be judged according to the circumstances of the individual patient. A means is extraordinary whenever it is not medically useful, too burdensome to use or even too expensive. A means can be extraordinary even if the patient is not terminally ill.
The main decision-maker should be the patient himself or herself, with the next of kin standing in if the patient is incapacitated. Ideally, though, the decision results through the cooperative discernment of patient, caregivers and loved ones. Any particular means of prolonging life must be evaluated in terms of the type of treatment to be used, its degree of complexity or risk, its cost and possibilities of using it, and comparing these elements with the result that can be expected, taking into account the state of the sick person and his or her physical and moral resources. Even a means already in use (such as a ventilator) can be withdrawn if it carries a risk or is burdensome. To refuse a means of life support in such a case 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.
The Ethical and Religious Directives for Catholic Health Care Services, published by the U.S. Bishops (fourth edition, 2001), maintain the same: Disproportionate means are those that in the patient’s judgment do not offer a reasonable hope of benefit or entail an excessive burden, or impose excessive expense on the family or the community. The directives go on to stipulate: 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.
Over the past several years, different theologians, bishops and bishops’ conferences have offered differing views about whether and when artificial nutrition should be considered an extraordinary or disproportionate means. The issue is particularly difficult in the case of persons who are comatose or in a persistent vegetative state, and hence unable to perceive their own condition, suffer consciously or consciously appreciate the prospect of extended life. Ultimately, the question is whether extended life in a state of permanent unconsciousness is a benefit or a burden to human dignity. A related question is whether the interests of otherseither family members or others who lack access to medical resourcesshould be relevant in determining whether a means is disproportionate for a given patient, especially since traditional sources relate the welfare of the individual patient to family and communal relationships.
Those who demanded that Terri Schiavo be maintained indefinitely by artificial hydration and nutrition disputed the consensus of reliable medical experts that her condition was permanent; claimed that continued life would be a benefit no matter what its condition; asserted that her parents’ interest in keeping her alive should be determinative; presented the withdrawal of artificial nutrition as starvation and murder; presented Ms. Schiavo as an innocent victim who deserved better protection from society, the courts and the law; and placed her case at the top of a slippery slope toward the murder of other disabled or disadvantaged members of society.
The debate about whether the use of medically assisted nutrition and hydration is mandatory in such cases was not clearly resolved by a speech on the subject by John Paul II in March 2004. (Although the identity of the author has been debated, it was almost certainly not the pope himself.) In this talk, Life-Sustaining Treatments and Vegetative State, he said that affected persons have the right to basic health care. He asserted 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 should be considered, in principle, ordinary and proportionate, and as such morally obligatory, as long as it is providing nourishment to the patient and alleviation of his suffering. He referred to withdrawal as starvation and euthanasia by omission.
While some applauded this speech as an important step in the direction of protecting innocent patients from harm, others saw it as marked by non sequiturs and inconsistencies, and as not ultimately settling the question in favor of always using artificial nutrition. For one thing, it is hard to see how tube feeding can flatly be judged not a medical act. For another, official teaching specifically permits the removal of ventilors (respirators), knowing that death will ensue, without referring to the outcome as smothering the patient. In both cases, it would seem, the rejection of the means of life-prolongation is not tantamount to directly desiring that the patient be dead, but rather to acceptance of death as now timely and a part of the human condition. Moreover, the reference to alleviation of suffering suggests that the papal remarks apply only to conscious patients. Most important, the speech is not consistent with prior well-established teaching and health care practices in Catholic institutions, as defined by the Declaration on Euthanasia and the Ethical and Religious Directives. In fact, artificial nutrition is not generally a part of hospice care, even though it was provided to Terri Schiavo. According to good medical evidence (e.g., The New England Journal of Medicine, July 2003), the dying process is neither painful nor uncomfortable without it.
Richard Doerflinger, of the U. S. Bishops’ Secretariat for Pro-Life Activities, said that the Holy Father has not declared an absolute moral obligation to provide assisted feeding in all cases (Ethics and Medics, June 2004). The Catholic Health Association referred health care providers to the Ethical and Religious Directives as the context for the interpretation of the papal speech. Neither those directives nor the 1980 declaration have been revoked by the Vatican, nor have Vatican officials taken steps to insist that all patients who cannot ingest food or fluids be intubated for artificial feeding.
In regard to the Schiavo case, the C.H.A. reaffirmed the importance of advance directives and advised caution in foregoing life-sustaining treatments, especially on behalf of vulnerable patients. It also reaffirmed that ultimately decisions about foregoing such treatment are made by assessing the potential burdens of the treatment in proportion to hoped-for benefits relative to the patient’s condition and from the patient’s perspective. Indeed, even before Ms. Schiavo’s death, the Florida Catholic Conference posted an advance directives form on its Web site and published the view of the Florida bishops that 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.
The key question in this case should have been, What is in the best interests of Terri Schiavo? Leaving the tubes in place cannot be simplistically equated with acting in her interests, since it could reasonably be argued that 15 or more years of existence in a vegetative state neither serves human dignity nor presents a fate that most reasonable people would obviously prefer to death. Those who saw continued tube feeding as a protection of the pro-life position and as a strike in favor of defenseless patients are mistaken if they think that expanding the definition of ordinary care will prevent unjust termination of life in health care settings. It is just as likely to worry those who want prudent judgments about their own best interests to be made by family members when their time comes. It may even contribute to the present movement for physician-assisted suicide, which is partly a backlash against the overuse of hi-tech care at the end of life.
On the other side, those who favor an approach more favorable to foregoing artificial feeding suffer under the misconception that the pro-life concerns are simply reactionary and misguided. Many disability-rights activists and organizations, as well as Jesse Jackson, joined hands with the Schindlers. This points up legitimate fears that medical decision-making often reflects utilitarian cost-saving standards, control by elite values and interests, and the continued marginalization from medical services of those who lack financial resources and a political voice. The sad story of Terri Schiavo calls for more pastorally sensitive and holistic care for those in similar situations, and better and more readily available hospice care for all. It cries out for the use of advance directives along with designated proxies to evaluate best interests as circumstances develop.
The Schiavo case is a warning for all concerned about the common good to become better advocates for broad national health care reform. Sane, just and morally acceptable health care would take the emphasis off expensive, specialized and excessive treatment for a few (who may well not have chosen it) and put it where the moral debate should be: integrated, humane health services for everyone who needs them.