Human Dignity and the End of Life: Caring for patients in a persistent vegetative state
In September 2007 the Congregation for the Doctrine of the Faith issued a Response approved by Pope Benedict to answer two questions posed by the U.S. Conference of Catholic Bishops on our moral obligations to patients who exist in what has come to be called a “persistent vegetative state.” The Congregation’s Response and its accompanying Commentary confirm and explain the statements made by Pope John Paul II on March 20, 2004, on the moral obligation to provide food and fluids to P.V.S. patients when they need such assistance to survive.
Two recent articles in America, “On Church Teaching and My Father’s Choice,” by John J. Hardt (1/21), and “At the End of Life,” by Thomas A. Shannon (2/18), appear to misunderstand and subsequently misrepresent the substance of church teaching on these difficult but important ethical questions.
The Duty to Provide Basic Care
Thomas Shannon, in his article, cites the Declaration on Euthanasia of 1980, which spoke of the discretion patients may have to refuse medical treatment that seems to them burdensome, and therefore “extraordinary” or disproportionate. He argues that this judgment by a patient is distinct from a physician’s judgment that a treatment is “medically ordinary” in the sense of being customary or usual. What is “medically ordinary” can be “morally extraordinary.” This is a valid distinction, but there is an aspect of patient care even more basic than the distinction between ordinary and extraordinary medical treatments: the “ordinary care” owed to sick persons because of their human dignity, which the Declaration said should be provided even when certain medical interventions have been withdrawn as useless or overly burdensome. Pope John Paul II and his successor held that food and water, even when their provision may require technical medical assistance, constitute the “basic care” that patients should receive. The value of such medical assistance is not to be judged by its efficacy in curing the patient or improving the patient’s condition. Supplying the basic necessities of life can often require the assistance of others, in the case, for example, of those who are very young or very old, or simply very weak at any age.
In the case of medically stable patients in a “vegetative state,” who may live a long time with continued nourishment but will certainly die of dehydration or starvation without it, the obligation to care for our fellow human beings presents a very direct challenge. Such a patient’s condition should not be characterized as “unstable” or terminal simply because it would become so if the patient were deprived of food and water.
Limits to This Obligation
It is true that this obligation to provide basic care can be exhausted when such assistance can no longer fulfill its basic purpose or finality. The U.S. bishops asked the C.D.F. whether food and fluids should be provided “except when they cannot be assimilated by the patient’s body or cannot be administered to the patient without causing significant physical discomfort,” and the congregation’s response recognized the legitimacy of this exception.
When patients are dying and their bodily systems are shutting down at the end of life, medically assisted nourishment can be ineffective and even create additional suffering. This is why physicians did not initiate tube-feeding for Pope John Paul II himself when he was in his final days. The pope’s condition in his final hours was in no way comparable to that of a P.V.S. patient, who can live a long time with assisted feeding.
Thomas Shannon, in his article, confuses the three exceptions recognized in the congregation’s Response and Commentary, and John Hardt finds four such exceptions. The C.D.F. Commentary does speak of a situation where the obligation to provide nutrition and hydration does not apply. This is not really an exception to the norm, but rather the simple recognition that we are never obliged to try to do the impossible. Some parts of the world may be so destitute or undeveloped that they lack the medical resources and skills for the kind of assisted feeding that can occasion difficult moral decisions. John Hardt goes further when he suggests that the C.D.F. Commentary introduces a broader and more subjective category of “burden” that justifies a simple dislike for survival in a helpless state. But that claim has no foundation in the text, is actually contradicted by the Response and raises an additional problem that is discussed below.
The Teaching on Euthanasia by Omission
Both Hardt and Shannon acknowledge that a concern about euthanasia is part of the background for the C.D.F.’s Response. However, neither cites the longstanding church teaching that an omission of basic care may itself be euthanasia. Euthanasia is defined in the Declaration of 1980 as “an action or an omission which of itself or by intention causes death, in order that all suffering may in this way be eliminated.” Such euthanasia is always morally wrong.
Here the church insists on the important distinction between validly withdrawing a life-sustaining means because the means itself is burdensome, and wrongly withdrawing it because (in someone’s view) life itself has become burdensome and should be brought to an end.
To cite this distinction in no way dismisses or minimizes the real suffering of long-term illness, or the real costs and burdens that families may undergo in caring for a helpless family member diagnosed as being in a persistent vegetative state. In his March 2004 Address to the Participants in the International Congress on Life-Sustaining Treatments and the Vegetative State: Scientific Advances and Ethical Dilemmas, John Paul II drew attention to this problem, insisting that such families “cannot be left alone with their heavy human, psychological and financial burden,” but must receive assistance from medical professionals, society and the church. This is the true meaning of “compassion” in the face of illness and disability, to “suffer with” the afflicted and lighten their burden through our support. The solution does not lie in seeking ways to hasten the patient’s death in order to lift burdens from the patient and family.
This is why the C.D.F. Response insists that assisted feeding may not be discontinued simply on the grounds that “competent physicians judge with moral certainty that the patient will never recover consciousness.” Even if one judges that such a condition, when prolonged, makes survival itself a burden, such a judgment does not justify removing food and water so the patient will not survive.
Some ethicists want to assess all the costs and burdens of caring for a helpless patient in a P.V.S., and then count these among the “burdens” of assisted feeding. One problem this approach raises is the question of intent. By omitting food and fluids, what are we trying to achieve? Whose “burden” are we trying to ease? Assisted feeding is often not difficult or costly to provide in itself, but the housing, nursing care and other basic needs of a helpless patient can be significant. To discontinue assisted feeding in order to be freed from such burdens puts the caregiver’s interests ahead of the patient’s, even if we prefer not to recognize the reality of our choice.
The Unity of the Living Human Person
Finally, the claim is sometimes made that the life of a P.V.S. patient, one who survives only because of medically assisted nourishment, is not a fully human life because it is not capable of interaction with other persons. Such a condition has been called a “baseline biological existence,” a merely “physical” life without inherent meaning or value. Assisted nutritional support, in this view, is warranted only if it may restore the patient’s ability to engage in the activities that constitute the value of our earthly existence. Such an argument has deeply disturbing implications, since it challenges the value of anyone with mental illness, retardation or cognitive disabilities who is not able to pursue what such critics deem “worthwhile” activity.
It was against such dehumanizing criticism that Pope John Paul II, in his 2004 address, insisted that “the intrinsic value and personal dignity of every human being does not change, no matter what the concrete circumstances of his or her life…. Even our brothers and sisters who find themselves in the clinical condition of a ‘vegetative state’ retain their human dignity in all its fullness. The loving gaze of God the Father continues to fall upon them, acknowledging them as his sons and daughters, especially in need of help.”
Our love and support for patients in P.V.S. should be modeled on God’s love, which is based not on their current ability to act and respond but on their enduring dignity as human beings, made in his image and likeness and facing an ultimate destiny with him. Earthly life is not the highest of all goods, and our hope in eternal life puts in proper perspective all disproportionate and burdensome efforts to sustain life.
Life is, however, the first and most basic good of the human person, the condition for all others: “Life is always a good” (Evangelium Vitae, No. 34). The way we treat this life here and now—especially the life of those who are most helpless and least able to care for themselves—has consequences for our own eternal destiny.
Persons in the so-called “vegetative state” deserve our unconditional respect. As Pope John Paul noted in his 2004 address, they should receive all reasonable assistance aimed at their recovery and rehabilitation. But even if such efforts at recovery do not succeed, we need to provide friendship and practical help to their families and treat these patients always as fellow human beings in need of basic care. In this way our Catholic community can build a culture of life that excludes no one from the circle of love and mutual support.