The Caregiver’s Lesson

Those who care for the severely disabled and dependent testify to our sense that they are part of the human community.

One of the more subtle arguments for denying human dignity and moral worth to the severely disabled or dependent could be called the “No Benefit” view. It holds that any patient who is in a persistent vegetative state or suffering from dementia and is no longer capable of pursuing human goods also cannot be benefited by the action of others. Similarly, unborn human beings, because they are not sentient, are said to have no interests, and no welfare. Action for the sake of their well-being is thus impossible.

Advocates for life have formulated many well-known theoretical responses to these claims (some of which can be found in the book I co-authored with Robert P. George, Embryo: A Defense of Human Life). As these debates continue, it’s worth turning to another important source for our reflection on these claims: the experience of those who care for human beings who are in a persistent vegetative state, or are yet unborn. In an especially vivid form, the way we treat the radically dependent or disabled gives important testimony to our ability to situate these beings within a common framework of goods, a framework essential for thinking of these beings as persons united in a moral community with those of us who are, at least at the present moment, fully functioning.

The implications of the No Benefit view are immediately, coldly clear: if it is impossible to benefit someone, then it is also impossible to harm him by taking his life. Further, if someone becomes convinced that they cannot benefit their disabled child, or dependent grandparent, they have no reason to tend to or care for that person. Why, after all, should we take care of someone else, sometimes at great cost to ourselves, if our care can do no real good? Indeed, the No Benefit view goes naturally hand in hand with the denial of the human dignity of the unborn and the radically disabled.

Those who care for the radically dependent or disabled are motivated in part because they want to avoid a future in which their charges are ignored, abandoned, mocked, or starved. Rightly, they recognize all these possibilities as bad for their charges. Instead, they attempt to preserve the patient’s life in a loving way, in an attractive environment, surrounded by loved ones, in an atmosphere of at least some joy, laughter, and music. Even if their charge has no active ability to reason, the caregiver still recognizes the attractiveness of this possible future, and the possibility that it is a real benefit not only to the caregiver, but also to their loved one.

This insight about the good is justified by the earlier thought about what would be bad for the loved one. If it is bad, say, to mock a permanently unconscious patient by dressing him as a clown, or using him as a door stop (and few would deny this), then it would therefore be good to pursue the very same goods—treatment with respect and solidarity—that those bad forms of treatment would destroy.

Similarly, pregnant mothers can readily imagine a situation in which their unborn children are unloved, unprepared for, and done violence to; and in all such cases, they can recognize a deficiency of goods for the child, not just for themselves. The active ability to exercise the powers of reason on the part of the unborn again does not seem necessary to act for a shared good in the person of that child. Even the horrific reason that is sometimes given to justify abortion, that it is for the good of the unborn child, shows at least this ability to recognize possibilities as good and bad for the unborn, even if there is terrible error as to which possibilities are good, which bad.

But isn’t the treatment of the unborn in this case entirely anticipatory? According to this objection, the goods sought are not goods now for them, but only will be goods for them later. The problem with this view is that it fails to explain the actions of mothers (and fathers) who care for their in-utero child in a loving way even when they know that their child will die shortly before or shortly after birth. Moreover, many parents identify a time in utero, perhaps even the moment they first heard they were expecting, as the real beginning of their relationship to their child.

By contrast, consider a more obviously anticipatory case. Suppose that right now I do not have friends, but am preparing in various ways for the possibility—moving to a more populated place, working on my personal grooming, and developing virtuous habits. These preparations are truly only anticipatory: they do not themselves begin any friendship, and when I do make friends, I will date the beginning of that good in my life from the time of the friend’s first presence, not the time of what was done in advance.

No Benefit theorists are also likely to argue that person-oriented treatment of the radically impaired at the end of life is entirely symbolic. What is performed is done only in recollection of a person who was once present, but is no longer; at the extreme, such theorists could hold that there is even a form of disrespect involved in treating what is no longer a person as if it still were one. And whereas many people see themselves as benefiting by maintaining solidarity and commitments to a permanently unconscious patient, such as a spouse or parent, a No Benefit theorist might think this benefit entirely illusory.

But adult children, siblings, and spouses often see themselves as maintaining a previously existing relationship with a patient, not simply honoring, in a symbolic way, a relationship that has in fact ended. Putting flowers on a gravestone is likely to be seen as a symbolic act done in remembrance; but bringing flowers, perhaps of a favorite kind, to the room of one’s permanently unconscious spouse is likely to be seen as a loving, not a remembering, act. Similarly, feeding a patient in a persistent vegetative state appears to be one thing, while leaving a piece of cake on the grave of a deceased loved one is something altogether different. And spouses who maintain fidelity to their unconscious loved ones are true to the goods of a marriage that continues to exist.

Our very practices thus reveal the implausibility of the claim that we are unable to benefit—and therefore also to harm—those not yet, or no longer capable of, acting for themselves. Yet the No Benefit view does highlight the reality that human beings, and their pursuit of human goods, have an important temporal aspect to them.

At a most general level, we are beings who live in time, who go through temporal phases of development and decay, and who are not, at various points, actively able to do all that we one day will, or one day did. Recognition of this is essential, or we are likely to think that a snapshot image of a human being will tell us everything about what that being is. Yet it is absurd to think that a snapshot of, for example, an infant tells us everything about that child’s capabilities or goods, in abstraction from how human beings typically develop through time. Indeed, to treat a child in accordance with such a snapshot idea would require that we abandon practices that make no sense from that perspective, such as talking to children who do not yet understand what is being said; yet these practices contribute in essential ways to the development of our children’s capacities.

Looking backwards, an understanding of how a particular human being has lived through time is essential to understanding the way in which certain goods will, and will not, be of benefit now for that person. In the context of established relationships with others, how a good must be pursued in order to fully benefit another takes a specific shape: given the contours of a marriage over time, for example, husbands typically know that certain gifts will please, and certain forms of respect will be appreciated by, their wives, while other forms, acceptable for a different couple, would be experienced as strange and alienating.

This temporally specific quality to the pursuit of goods with and for another suggests that our treatment of those who have lived among us, but are now radically impaired, should be affected by the shape of those previously existing relationships. The way of life lived by a person now in a persistent vegetative state—a life that typically will have been lived with others, within a certain family-specific “culture”—might have consequences for the forms of good his caregivers should now pursue for him. Why, for example, would family members play music of a form detested by the patient in his presence, or decorate his hospital ward in a way known to be disliked?

On the other hand, particular ways of showing affection, developed through time with the patient, might still be especially appropriate even when the patient cannot actively respond to those gestures. A family-specific way of life, for example—styles of dress and decoration, forms of communication, jokes, religious symbols, and the like—should perhaps be extended as much as possible into the life of a no-longer conscious patient. Thus parents of a PVS child will hope to bring friends to visit, and to take meals, celebrate holidays, and pray together in the presence of their unconscious child, and even, if possible, to care for the child in the home. If this suggestion is correct, then the form that the general good of sociality and solidarity should take would thus be specified by the patient’s and the family’s past.

We must be able to situate human beings in their presently existing condition, and to situate their present opportunities for goods, into a larger temporal frame that includes their past and future. This is essential if we are to recognize that those human beings are a part of our human community, and that they can, like more active members of that community, be really benefited and really harmed by our choices. And these abilities are evidenced by our lived experience, and, in particular, by the practice of parents, husbands, wives, children, and friends who realize, in the lives of their charges, the goods of life, play, beauty, justice, and solidarity from conception to natural death.

Keep up with the conversation! Subscribe to Public Discourse today.