Just over a year ago, my wife, Martha, was operated on for a brain tumor. I rejoiced when the doctor said it was not malignant. But ten days later, due to complications from the first operation, she had to undergo brain surgery again. Something went badly wrong, and she has not regained consciousness, though she did recover, in the sense that in a few weeks her condition stabilized and I was able to have her moved from the hospital to a nursing home. She breathes on her own, is fed through a tube leading directly into her stomach, and goes through a sleeping-waking cycle.
At first I thought Martha sometimes knew when the children and I were there and sometimes smiled when we talked with her. But the doctors, nurses, and chaplain all believed she never was really responsive, and after a few weeks I realized that they were right. The neurologists recently told me they are convinced Martha is in what they call a “persistent vegetative state,” from which patients do not recover. Now I no longer expect Martha ever to wake up.
I have come to accept this as God’s will. Many people in our parish have been praying for her recovery at particular times each week, so all this time someone has been praying for her from early morning until late at night. But I am not expecting a miracle and feel God has been answering the prayers by strengthening me and blessing the children. We have five, ranging now from eighteen down to six. Despite everything, they are all doing well, caring for one another and even for me, and various relatives, friends, neighbors, and fellow parishioners have given us generous help when we needed it.
They take good care of Martha at the nursing home, keeping her clean, regularly turning her from side to side, monitoring her temperature and so on, treating any sign of infection, and dealing with other health problems just as they do with patients who are alert and responsive. The problem is the cost—more than a hundred dollars a day. The insurance ran out early on. Hoping to get some help with this expense, I had a law firm that specializes in medical malpractice cases look into Martha’s operations. The lawyers and their doctor got her records and examined them (for which they did not charge me), but found no grounds for a case against the doctors or the hospital. Since the insurance ran out, I have used more than thirty-five thousand dollars of our savings. If that goes on, the savings will be exhausted within another year, and Medicaid will begin paying most of the bill. But then there will be nothing left for the children’s education or for retirement or anything else.
I love my wife, have always been faithful to her, and always will be. The children love their mother and miss her. We certainly do not want her to die. But I do wonder whether there is some way out. A few years ago, she signed a sort of living will, saying that in case of terminal illness she did not wish to be kept alive by means other than those morally required. Does that document give me the right to decide, either now or at some point in the future, that the care she is getting should be stopped? If I do have that right, our family doctor suggested I could end the care most easily by having the feeding tube removed. I know this sounds drastic, but since I now believe Martha never will regain consciousness, it seems to me that she no longer has a life worth living.
The question is what sort of care is morally required and appropriate for this patient. Since removing the feeding tube would save the cost of skilled nursing care as a whole only by bringing about the woman’s death, the choice to remove the tube would be homicidal. Since she did not renounce her right to the care appropriate in her present condition, withholding all care would signify lack of love for her and lack of respect for her dignity. Still, the benefits of continuing care in the nursing home are limited and the financial burden is great. So, the questioner is not obliged to continue caring for his wife in that way. The morally acceptable alternative would be to take her elsewhere and care for her within the limits of the human and financial resources that can be reasonably allocated for this purpose.
While I can only dimly imagine your suffering during the past year, I sympathize with you and desire to help you. Nevertheless, I must begin by saying your last remark is mistaken.
Of course, as matters stand, your wife’s life has little or no emotional appeal, since your feelings of repugnance toward her present condition quite naturally engulf your feelings about her very survival, taking away your joy in it and negating your desire for it. Moreover, the expression “persistent vegetative state,” used to describe her condition, falsely suggests that, since her life no longer serves as the basis for feelings and thoughts and actions, it is now no better than the life of a vegetable.
No human life is a merely instrumental good, however, for a human life is the concrete reality of a living human body, and a person’s living body is the bodily person (see qq. 43 and 45, above). To deny this is to accept some sort of dualistic theory of human persons—that is, a theory that they actually are bodiless beings who only have, inhabit, and use bodies (see q. 45, above). Therefore, the prospect of sustaining and prolonging any person’s life always is a reason for taking measures to do so.155 It is not always a decisive reason, however, because life is only one among many goods that together comprise a human being’s fulfillment, and people’s duty to preserve their own and others’ lives is limited by the needs of other people and the claims of other goods. In sum, since your wife remains a living person, her life retains its inherent goodness and is a reason, though not necessarily a decisive one, to continue caring for her.
You implicitly acknowledge the goodness of her life in saying you do not want her to die. Though she no longer can actively live her life, she does still have a life worthwhile in itself. Moreover, she has your love and faithfulness, the children’s love, the committed care of her nurses, and the good will of others, such as those who pray for her. Some fully conscious people have a good deal less of true human value.
You ask about stopping the care your wife is now receiving and how that might be done, and say your family doctor has suggested removing the tube through which she is fed and given water.156 I do not know whether the administrators of the nursing home would accept such a directive from you. Be that as it may, it seems to me that, morally speaking, you have no right to direct that the tube be removed.
I say this because I think that in giving such a directive you would be reluctantly choosing—though without fully realizing it—to kill your wife. I believe you when you say you and your children do not want your wife to die, and your purpose in giving the directive would be, not to end her life, but to save the cost of caring for her, so that the money saved would be available for other responsibilities. What you cannot afford, however, are not the tube feedings, in themselves not very expensive, but her care in the nursing home as a whole. Removing the feeding tube will solve that problem only by bringing about your wife’s death. So, it seems to me, the directive to remove the tube would be a reluctant choice to end her life as a means of ending her costly care, and that choice would be homicidal. If that is correct, though you may end your wife’s costly care, you must do so in a different way.
The document your wife signed is not helpful, since it provides directions only about what to do when she is terminally ill. One cannot reasonably call someone “terminally ill” unless he or she either is plainly dying, so that death in a very short time can be predicted with certainty, or is suffering from some disease or injury that predictably will be the cause of death.157 Neither of those conditions is verified in your wife’s case. Rather than being terminally ill, she is very severely handicapped. Her handicap is similar to, though more extreme than, that of a severely retarded person who will never be able to make a choice or even control his or her stream of consciousness.158 Besides being irrelevant, the document your wife signed is unhelpful in saying that only morally required means shall be used in sustaining life. After all, your question precisely is: What is morally required?
Unfortunately, the Church’s explicit teaching provides no clear answer to it. The bishops of the United States have taught: “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.”159 As has been explained, the care your wife is receiving does benefit her by sustaining her life and in other ways, and it hardly can be thought to burden her. So, you should presume that the feeding tube should not be removed from your wife. But that presumption does not settle the matter, for burdens to others of continuing to provide such care might be so great that it could be rightly ended. For example, in a disaster situation where continuing to provide nutrition and hydration for someone in your wife’s condition would prevent helping a person with a good prospect of recovering, a choice to help the latter person surely would not be wrong. Therefore, a line must be drawn, and the question is how and where to draw it.
To clarify what you should do, I shall first explain both the ground and the limits of the obligation to provide life-sustaining care to people who need it.160
Since being alive is a condition for participating in other human goods, people ordinarily have strong reasons to do what they can to sustain life. Still, the use of any life-sustaining means imposes some burdens, at least its costs in time and energy, and the resources used to sustain one person’s life usually also could be used to sustain another’s and perhaps for various other good purposes. Thus, there are limits to the means one need use, or even can rightly use, to sustain any person’s life.
When someone is in your wife’s condition, most reasons for doing what can be done to sustain his or her life—rather than using the resources for other good purposes—have dropped away, since remaining alive no longer enables the person to share in those goods that involve or presuppose normal consciousness. Since life is inherently good, there still is a reason to sustain it and to care for the gravely debilitated person in every appropriate way; but this reason cannot be considered decisive in determining moral responsibility. Otherwise everyone always would be obligated to use every available means to sustain any person’s life. But sound principles of morality do not entail such an exceptionless obligation, in practice nobody acts on it, and the Church implies that it does not exist by teaching that some means can be considered extraordinary and nonobligatory.161 Therefore, when resources that could be used to sustain someone’s life are needed to meet some other serious responsibility, one may use them for that other purpose, provided there is not some reason in addition to human life’s inherent goodness for using them to sustain life.
Applying this position to your problem, I think you need not use all your remaining savings and a large part of your future income to continue paying for the care your wife has been receiving, but may use these resources for the other good purposes you mention: your children’s education and your retirement savings. If the neurologists are right, your wife never will regain consciousness, and ending skilled nursing will not deprive her of anything that presupposes awareness, though, of course, it probably will shorten her life.162
Still, you should do what you reasonably can to care for your wife. Care for anyone in need ordinarily maintains and manifests solidarity with that person: respect and love for him or her as a person. By the same token, failing to do what one can for those in need constitutes and manifests alienation from them: lack of respect and love for them as persons. As Christians, we are called to that love, and failing the least of Jesus’ brothers and sisters is failing him (see Mt 25.41–46, 1 Jn 3.17). Hence, life-sustaining care for people in your wife’s condition and for others who are very severely handicapped ordinarily does have a human and Christian significance in addition to the one it would derive precisely from the inherent goodness of their lives. This additional significance is not symbolic, in the sense of being a mere gesture effecting no real benefit, but profoundly real, just as is the significance of your faithfulness to your wife, which continues to benefit not only you but her inasmuch as the two of you remain, until death, one flesh.
However, while neither spouse may rightly forgo the other’s fidelity, a person sometimes can uprightly choose not to receive care. Lacking an obligation to seek or accept care but having a right to it, one might choose to forgo it, not as a suicidal act but as an act of merciful self-denial—to allow the money and effort that would be devoted to one’s care to be used instead for others’ benefit. But nobody else, not even a spouse, can perform a merciful act of self-denial on someone’s behalf. Still, when someone does uprightly choose to forgo care, those who abstain from providing it, far from being alienated, maintain solidarity and manifest respect and love for him or her as a person.163 On this basis, I have maintained that a person who foresees the possibility of becoming unconscious, with no reasonable hope of recovering consciousness (the condition the neurologists believe your wife now is in) could rightly direct that, if he or she ever were in that condition, no care be given, in order to save others the costs and other burdens of giving it (see LCL, 530–31).
Had your wife taken that position, I think you could rightly direct the nursing home to abide by it and to do nothing more for her. In doing so you would not be choosing to end her life, though stopping the tube feeding along with all other care certainly would soon result in her death. However, she did not sign a directive concerning the present situation, but one concerning what to do if she were terminally ill, which does not show what she would want in the situation you face. And, as I have explained, it seems to me that, if you were to direct the removal of your wife’s feeding tube, you would choose, reluctantly but homicidally, to end her life.164
In sum, in my judgment: (1) you may not direct that your wife’s feeding tube be removed, (2) you need not continue to provide for her care in the nursing home, and (3) you should not simply stop all care. What, then, are you to do? Do the best you can. Care for your wife as well as you reasonably can while keeping the costs within your means. To cut costs, you will have to take her out of the nursing home. Perhaps you should bring her home, though you should look into alternatives and may be able to make some other suitable arrangement.
Supposing you bring her home, how can you care for her and what should you do for her? Having neither the nursing home’s facilities nor the professional skills of its staff, you cannot continue to meet the standards of the care she has been receiving. However, you and your children should do what you can, consistent with other responsibilities, to care for your wife and their mother. Let your relatives, friends, neighbors, and fellow parishioners know what you are doing; some probably will offer to help, and you should accept such offers while trying not to divert people from their other responsibilities. If physicians, nurses, or other health care personnel volunteer their help and advice, accept it.
You should establish a budget so that your total expenditures in caring for your wife will be consistent with meeting other family members’ needs. If problems arise with the tube feeding or she seems ill—for example, if she becomes feverish—obtain professional help and medications insofar as the budget permits, while making use of any available insurance coverage. Keep her warm in winter and as clean as you can. Provide restraints so that she does not fall out of bed, turn her from side to side regularly if you can, and so on. Ideally, you should arrange to have someone with her at all times—with the help of relatives, friends, neighbors, and fellow parishioners—but if that is impossible, you need not exceed the budget in order to hire someone, and may leave her alone when necessary.
In short, you should make a genuine effort to care for your wife, just as good Christian families always did for their helpless and debilitated members. But also go on with your lives, not slighting other responsibilities, and limit expenditures for your wife’s care to a reasonable level. With such care, your wife’s condition will not be as good as it would have been had she remained in the nursing home, and she probably will die sooner than if she had stayed there. However, you will no more have killed her, and will have loved her no less, than if you had continued to pay for her care in the nursing home at the cost of the children’s education and saving for your own retirement.
Caring for your wife at home certainly will be physically and emotionally burdensome for you and your children. I expect it will be especially painful to experience the consequences for your wife of the comparatively inadequate care you will be able to provide for her. It would be much easier to solve the problem quickly and neatly by taking your family doctor’s advice and having the feeding tube removed. However, by accepting suffering, you will avoid choosing to kill your wife. And bearing that suffering, along with all the other burdens of caring for her at home, will be a work of faithful love. By that work of love you will bear powerful witness to truths often questioned and denied today: that people in your wife’s condition enjoy no less dignity than anyone else, that human bodily life is always good, and that we ought to care for our loved ones rather than kill them even when they no longer can consciously live their lives and may even seem not to have a life worth living.
As for the children, while there are reasonable limits to the help that should be asked of them, children should do what they can to care for their parents when help is needed. Yours may well find fulfilling their responsibilities toward their mother a hardship, but it will be only fair that they accept rather heavy burdens, since part of the money saved by bringing her home will be used for their education. Moreover, helping care for their mother will be morally beneficial to them. They will be the first to benefit by the witness you and they together will bear to their mother’s equal human dignity, the preciousness of her life, and the appropriateness of continuing to love and care for her to the end. If you tried to spare your children this cross, you would not really be considerate of them. Rather, you would deprive them of the last lesson God wished their mother to teach them, a lesson that will remain with them their whole lives, guiding them to follow Jesus and so rejoin her in heaven.
155. In a critique of a preliminary version of this question, Kevin D. O’Rourke, O.P., “Withdrawal of Life Support: Mistaken Assumptions,” Health Progress, 77:6 (Nov.–Dec. 1996): 61, begs the question by assuming that life is only instrumentally good, denies that prolonging the life of a permanently unconscious person benefits the person, and holds that the “abstract concept of ‘intrinsic goodness’” is irrelevant to moral decision making.
156. Council on Ethical and Judicial Affairs, American Medical Association, Code of Medical Ethics: Current Opinions with Annotations, 1996–97 ed. (Chicago: American Medical Association, 1996), 2.20, lists (p. 39–40) artificial nutrition and hydration as included in life-sustaining medical treatment and asserts (p. 41): “Even if the patient is not terminally ill or permanently unconscious, it is not unethical to discontinue all means of life-sustaining medical treatment in accordance with a proper substituted judgment or best interests analysis.” But this opinion is inadequate insofar as it fails to consider the intention with which life-sustaining treatment is discontinued.
157. O’Rourke, op. cit., 60, rejects this definition of terminally ill and proposes instead: “A more nuanced concept maintains that a terminal illness is one from which death will result if medical means to prevent or delay death are not used.” But this “nuanced concept” plainly is much too broad, since many people who would die without medical intervention recover, and many people who suffer from chronic diseases would die without medical interventions that keep them alive and functioning, though with impairment, for many years.
158. See Stephen L. Mikochik, “When Life Becomes Optional: A Comment on Kevin O’Rourke’s Approach to Forgoing Life Support,” Issues in Law and Medicine, 10 (1994): 343–51; also see Kenneth R. Mitchell and Terence J. Lovat, “Permanently Unconscious Patients and the Ethical Controversies Surrounding Artificial Nutrition and Hydration: Getting the Facts Straight,” Linacre Quarterly, 60:1 (Feb. 1993): 75–90.
159. National Conference of Catholic Bishops, Ethical and Religious Directives for Catholic Health Care Services (Washington, D.C.: United States Catholic Conference, 1995), directive 58; cf. U.S. Bishops’ Pro–Life Committee, “Nutrition and Hydration: Moral and Pastoral Reflections,” Origins 21:44 (9 Apr. 1992): 705–12.
160. I previously have treated this question to some extent (LCL, 284–86 and 530–32), and shall not repeat that discussion here.
161. Congregation for the Doctrine of the Faith, Declaration on Euthanasia, AAS 72 (1980) 549–50, Flannery, 2:514–16, restates previous theological and magisterial teaching that some means of life-sustaining treatment are ordinary and morally required while others can be extraordinary and nonobligatory; this document adds a terminological clarification, according to which ordinary and extraordinary may be replaced with proportionate and disproportionate, and immediately explains that the distinction between the two is to be made by comparing burdens and benefits: “In any case, it will be possible to make a correct judgment as to the means by studying the type of treatment to be used, its degree of complexity or risk, its cost and the 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” (AAS 550, Flannery, 515).
162. The unconsciousness of persons said to be in a “persistent vegetative state” is in principle not demonstrable, and some call it into question; see, e.g., Chris Borthwick, “The Proof of the Vegetable: A Commentary on Medical Futility,” Journal of Medical Ethics, 21 (1995): 205–8. The diagnosis of vegetative state also may be mistaken; Keith Andrews et al., “Misdiagnosis of the Vegetative State: Retrospective Study in a Rehabilitation Unit,” British Medical Journal, 313 (6 July 1996): 13–16, report that of forty patients referred to a rehabilitation unit as being in vegetative state between 1992 and 1995, seventeen (43%) were considered as having been misdiagnosed, and seven of these had been presumed vegetative for more than one year, including three for over four years.
163. O’Rourke, op. cit., 61, misrepresents me as holding that the moral right to make health care decisions on behalf of an incapacitated person depends on civil law; he simply ignores the moral significance of a person’s expressing (or not expressing) a merciful choice to forgo care to which he or she is entitled.
164. For a further explanation of the position that nutrition and hydration generally should be provided for permanently unconscious people who did not make it clear that, if ever in that condition, they wished to forgo all care, see Germain Grisez, “Should Nutrition and Hydration Be Provided to Permanently Comatose and Other Mentally Disabled Persons?” Linacre Quarterly, 57:2 (May 1990): 30–43. In this article I criticize an argument offered by Kevin D. O’Rourke, O.P., for the view that nutrition and hydration may be withdrawn from all permanently comatose people. O’Rourke, op. cit., and also “Prolonging Life: A Traditional Interpretation,” Linacre Quarterly, 58:2 (May 1991): 12–26, has reaffirmed his view but not responded to my criticisms. For another articulation of the two opposed views, see the debate, “Hydration and Nutrition: Medical, Legal, and Ethical Obligations,” in Donald G. McCarthy, ed., Scarce Medical Resources and Justice, Proceedings of the Bishops’ Workshop, Feb. 9–13, 1987 (Braintree, Mass.: The Pope John Center, 1987), which includes Mark Siegler, “I) A Physician’s Perspective” (133–41); Dennis J. Horan, “II) Legal Reflections on the Role of Church Teaching” (141–58); Benedict M. Ashley, O.P., “III) Ethical Obligations” (159–65); and discussion involving the three presenters in response to bishops’ questions (179–94).