My husband, Steve, has Lou Gehrig’s disease, which causes its victims gradually to lose the use of all their muscles and inevitably leads to increasing paralysis and death. At present he is confined to a wheel chair but still has some use of his hands. Eventually the breathing muscles will deteriorate to the point where he will die from lack of oxygen unless put on a ventilator. We are looking ahead to that situation and considering what to do when it comes. In particular, we wonder whether it would be wrong for Steve to go on the ventilator for a while, with a view to discontinuing it at some later time.
We have come to terms with the disease and are facing the future calmly. We have time, at least several weeks and perhaps a few months, to make this decision. The community in which we live has been very supportive, and, for the most part, Steve has been at home, where I have been able to care for him with some help. Both of us want to continue in this way to the end, partly because we want to go through this together and partly because we want to keep the costs down to limit the impact on Steve’s associates—a rather small group with whom we have our health coverage.
While caring for Steve at home will not rule out his going on a ventilator, it will, of course, make things harder for both of us and the hardship will increase as his condition deteriorates. We expect that the time will come when the ventilator will seem not so much a helpful appliance as an annoying contraption. As his condition deteriorates, however, we will be able to communicate less and less, so I may have to decide alone when to discontinue the ventilator—if it is to be discontinued. The decision will be hard, because at that stage of the disease discontinuing the ventilator will result in death in minutes, whereas continuing it could delay death for many more days or weeks.
So, as I said, we are wondering whether it would be wrong for Steve to go on the ventilator and stay on it as long as it seems to us worthwhile, then discontinue it and allow him to die.
There is one other thing. Some of our friends have been praying for a miracle. So far, Steve and I have not been doing that. From the beginning, we have prayed only that God’s will be done, and that Steve and I and our children will meet again in heaven. Do you think it would be better to ask also for a miracle? Or should we leave that up to God, as we have been doing? Should the possibility of a miracle come into our thinking about Steve’s going on the ventilator and, possibly, discontinuing it?
Two questions are asked: whether it is morally acceptable to go on a ventilator for a time with a view to eventually discontinuing it, and whether to pray for a miracle. Before deciding whether to use any specific means of prolonging life, three prior moral requirements must be satisfied. (1) One may have a moral obligation to use a means necessary for prolonging life so as to fulfill some important responsibility. (2) If using some means to stay alive is unfair to others, one should not use them. (3) One may never choose to do or omit anything in order to bring about death. If these three requirements are satisfied, the questioner and her husband should consider the reasons, grounded in likely benefits and burdens, for and against going on the respirator, and judge which set of reasons makes a stronger case. As burdens and benefits shift, they should reconsider the question. If and when they judge it appropriate to discontinue the ventilator, they may rightly do so despite foreseeing that death will result in minutes. Whether to pray for a miracle is a question for their discernment, and the possibility of a miracle need not be taken into account in their decisions about the ventilator.
You and Steve show your faith and hope by your conscientiousness and calmness in accepting suffering. Do not miss any of the religious value of this cross. Since God has permitted it and you cannot avoid it, it is a part of your vocation—a part which, like any other, you should obediently accept and commit yourself to fulfilling, as, indeed, you apparently have done. Commitment to such an element of one’s vocation means seeking ways to make the most of it and faithfully carrying out its responsibilities to the end. Besides dealing rightly with the problems immediately presented by the disease and its care, these responsibilities include using the opportunities for witness—giving others an example of faith and humility—and offering your suffering in prayer for others’ benefit.
Like any other new element of a Christian vocation, this sort of calling must be considered together with all the other elements of your vocation and integrated with them. Therefore, one criterion for your decision about the ventilator, as for other life-and-death decisions, is whether any unfulfilled responsibility—for example, some duty pertaining to work or family, or the need to prepare for death—requires that Steve try to stay alive, so that using the means necessary to do so would be obligatory. Presumably, though, at this point he has met all his responsibilities and would gladly accept and stay on the ventilator if that were necessary to remain alive so as to meet any others.
Responsibilities to other people include not only affirmative ones but also negative ones. In the present case, perhaps a time will come when some form of care will impose excessive burdens on others. For example, perhaps you will be unable to deal with some crisis at home and the mounting costs of hospitalization will begin to impinge unfairly on the other members of the group with which Steve is insured. If that happened, it would be necessary for him to leave the hospital in order to avoid injustice, even if that would lead quickly to death. This is not putting a dollar value on a person’s life; but even when life is at stake, there are limits to the burdens that can be imposed fairly on others. I am confident that in this respect, too, neither of you would be reluctant to forgo what you should.
Turning now to your specific question, I think the key to answering it correctly lies in focusing on the intention behind refusing or limiting some form of care. Someone who initially accepted a ventilator might decide to have it removed precisely in order to bring about speedy death. That would be wrong, since it would be a decision to commit suicide. Notice, though, that someone also might choose not to go on the ventilator in the first place (or might refuse some other life-sustaining means) for the same unacceptable reason. While neither you nor Steve is likely to embrace a suicidal option, both of you should clearly understand what that option is; you also should be aware that, when suffering mounts, the temptation might arise to end it by seeking death, and that temptation must be resisted firmly.
Nevertheless, while foreseeing death either eventually or almost immediately, someone might refuse to go on a ventilator or choose to discontinue it (or any other life-sustaining means), not in order to bring about death, but for some other reason—for example, to limit the cost of ongoing care or to avoid some other bad aspect or effect of accepting or continuing with it. In that case, refusing or discontinuing a ventilator would not be a choice to commit suicide.173
Before I go further, let me summarize what I have said thus far. There are three definite limits: (1) one should try to keep oneself alive long enough to fulfill all one’s duties; (2) one may not do something to stay alive when doing it is unfair to another or others; and (3) one may not choose to do or omit anything in order to bring about death, even as a means of avoiding further suffering. Your question therefore can be restated: How do Steve and you judge within those three definite limits whether he should go on the ventilator, and if he does go on it, whether at some time to discontinue it?
Begin by examining your feelings. Naturally, you always will feel some fear of death and reluctance to forgo anything that might prolong life; but at some point such feelings no longer will be reasonable, and will have to be set aside. Other feelings imperfectly integrated with your better selves also must be recognized. Having done that, consider the reasons for and against. The reasons for going on the ventilator are the prospective benefits of doing so. If Steve does not go on the ventilator, I assume his breathing will become more and more of a struggle until he finally suffocates. The ventilator will forestall that, and his dying will be easier if he remains on it at least until his condition deteriorates to the point that he could not breath at all without it. Then too, initially, at least, it not only will sustain his life but enable him to continue doing various worthwhile things, such as maintaining family ties by communicating with you and the children, and engaging in religious acts such as praying and offering his suffering. The example he will give to others also may be an important benefit of his staying alive. Even initially, however, going on the ventilator will impose certain burdens. It will cost something; it will make his life more of a struggle; and it will require you, as care giver, to work harder. As long as he is on it, regular lung pumping will be required, and the family always will be anxious that the machine might break down or the power go out. These burdens also must be considered. They provide serious reasons to forgo the ventilator.
Having considered the reasons for and against, how do you decide? There is no norm to tell you what to do. Both using and forgoing the ventilator could be appropriate. Consider the reasons for both possibilities, that is, both the benefits and the burdens of using the ventilator. Then, since the two sets of reasons are disparate and not commensurable with each other, you will have to judge which set of reasons constitutes the stronger case.
I expect that initially you will judge it appropriate for Steve to go on the ventilator. As you point out, however, if he does, the benefits will decrease as the disease progresses and the burdens will increase: he will be able to do less and less, while the costs will mount and you will tire. Therefore, you should regularly reconsider the benefits and burdens. Considering everything, you always will have some reason (at least that his life remains good and his death will be bad) to continue the ventilator and some reason (at least that continuing it costs money and requires effort) to discontinue it. You will have to judge at each stage whether to continue.
While that decision cannot be made in advance, you and Steve would do well to discuss now how much importance to give to certain stages of his decline whose significance he may be unable to discuss with you once they have occurred. If he thinks it probably will be better to forgo the ventilator and accept death at some such stage of decreasing benefits, in order to end the mounting expense and other burdens of his care on you and others, you are likely to find your judgment when the time comes more confident and less painful to act upon.
If the law where you live allows people to appoint someone to make health care decisions when they cannot do so for themselves, Steve would be wise to take advantage of that law and appoint you (see LCL, 528–30). Having legal authority over his health care, you will be far less likely to encounter resistance to your decision by anyone, such as hospital administrators if Steve happens to be in the hospital when you decide the time has come to discontinue the ventilator.
Some Catholic ethicists who adhere to the Church’s teachings would say that you should use the ventilator as long as it is an ordinary means of preserving Steve’s life, but may discontinue it when it becomes an extraordinary means. In practice, however, one cannot distinguish an ordinary means from an extraordinary one except by reflection along the lines sketched above. As has been explained, that reflection, while presupposing several norms, finally requires a judgment whether to use means for the sake of their benefits or to forgo them so as to avoid their burdens. Thus, the preceding reply did not speak of ordinary and extraordinary means, since speaking of them would not have been helpful.174
As for praying for a miracle, that is a matter for your discernment. You should pray over the question, arouse the feelings associated with your faith and other commitments pertaining to personal vocation, and use those feelings to discern which possibility and set of reasons is more harmonious with your Christian selves (see LCL, 291–93). But perhaps the following thoughts will be helpful.
Surely, praying as you have been is good. Jesus taught us to pray that God’s will be done, told us to seek heaven first of all, and promised that God would provide everything else we need. But praying for a miracle also would be good. Jesus said that we should be childlike, and, as you very well know, children ask for exactly what they want. Besides the benefits for Steve, you, and your children, a miraculous cure would manifest God’s goodness and power, arouse faith in some people and strengthen it in many others, and perhaps be a confirmation of the holiness of a person through whose intercession you sought the miracle. Praying through an intercessor would not be necessary, of course, but it would be good, as Catholic tradition makes clear. As an intercessor, you might choose someone whom the Church has declared venerable or blessed, or, perhaps, someone deceased whose holiness you know about at firsthand, such as a devout and faithful grandparent or parent.
Of course, anyone who prays for a miracle must be ready to accept God’s will. Though Jesus told us to ask for whatever we need and promised we would receive what we ask for, he plainly did not mean that we always would receive what we want in the form we think best. And even if God responds to your prayers with a miracle, that cure will only delay Steve’s death. Eventually all of us will die, and the prayer for life of those who persevere in grace will be fulfilled, not by a temporary extension of life in this world, but by unending life in heaven.
The possibility of a miracle should not influence your decisions about using a ventilator. If you pray for a miracle, be confident that God will do what is best, whichever conscientious decision you make. As I have explained, your decision should be made on the basis of the reasons available to you. Whether you pray for a miracle or not, be confident that Steve, even if he die, will live. And hope confidently, too, that you and your children will meet him again in heaven.
173. Choosing to do or omit something to bring about death so as to end burdensome life is euthanasia, which always is wrong; choosing to forgo some sorts of treatment because they have become too burdensome is not euthanasia and sometimes is justified; see LCL, 469–88, and qq. 45 and 47, above.
174. 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.