Duty and Disability

The recently reported story of Rom Houben is both frightening and inspiring. Houben, wrongly diagnosed as being in a persistent vegetative state over 20 years ago, has recently learned to communicate with the aid of a speech therapist. Few things could seem more terrifying than the prospect of being in such a state, but going unrecognized for so long. The Daily Mail reports that “Houben, trapped in his paralyzed body after a car crash, described his real-life nightmare as he screamed to doctors that he could hear them—but could make no sound. ‘I screamed, but there was nothing to hear,’ said Mr. Houben.”  His new method of communication has enabled him to pursue aspects of his well-being that were unavailable to him before. He is currently at work on a book.

Houben’s story resonates with those who are convinced that some or even many allegedly persistent vegetative state (PVS) patients are in reality misdiagnosed, and are either currently conscious or capable of a fuller recovery than is often asserted to be possible. The family of Terri Shiavo, for example, believed that she was responsive to their efforts at communication and, indeed, to their personal presence, in a way incompatible with the standard description of PVS as a state of “complete unawareness.”

Houben’s story illustrates more generally a feature of our growing knowledge of the lives of the disabled: Very often, disabled persons are capable of many more substantive opportunities for human fulfillment than we are initially inclined to believe. This is a point that disability activists have been making for many years, and it reminds us that many of the limitations that the disabled encounter are a result of our own misconceptions, misunderstandings, and failures of imagination and creativity.

But Houben’s story should also prompt reflection on a further lesson: the case against withdrawing artificial nutrition and hydration (ANH) from patients in a PVS state does not, ultimately, rest on the possibility of an error in diagnosis. While, for example, the tragedy of the end of Terri Schiavo’s life would be compounded by the discovery that she had indeed been conscious, or capable of consciousness, the wrong that was done to her is not mitigated by consciousness’s absence.

This claim is, of course, denied by many today. Many secular thinkers, and even some influential Catholic moral theologians, agree that the life of the patient in PVS just as such is of no real value. Michael Panicola gives a representative version of the claim:

Though a medical treatment such as medically assisted nutrition and hydration provides the sustenance necessary to prolong the lives of PVS patient, it is not considered a beneficial medical treatment in the Catholic moral tradition because it does not restore these patients to a relative state of health. No matter how long medically assisted nutrition and hydration prolongs their lives, it will never improve their condition to the point that they can experience life in a way that enables them to pursue any spiritual goods even at a minimal level. The tragic reality is that these patients are no longer capable of receiving any meaningful benefit from medicine’s efforts to keep them alive” (emphasis added).

I myself see this neither as the view of “the Catholic moral tradition” nor as a justifiable secular view. From the former standpoint, the teachings of the Catholic Magisterium do not seem in line with Panicola’s claims. Such patients are still persons made in God’s image, their existence is sustained by God’s causality, and they are loved by God. If their lives were of no meaning, then God’s love—which desires only benefit for those he loves—and God’s causality, would be together responsible for a situation in which there was no benefit for PVS patients in their continued existence. This seems paradoxical.

From a secular standpoint, the denial of the intrinsic goodness of bodily life commits one to a dualism according to which either persons or their value are identified with their consciousness. But if, as I believe, persons are bodily beings, and persons are intrinsically valuable, then their bodily life is intrinsically valuable. If only their conscious states are valuable, then the bodily life of human persons is only instrumentally valuable, and hence persons are only instrumentally valuable. (Such claims are argued at much greater length in Patrick Lee and Robert P. George’s recent book Body-Self Dualism.)

Recognition of these mistakes about the nature and value of human life are essential to answering a question put forth by Ron Hamel and James Walter. Identifying the form of reasoning essential to judging that a treatment may be refused or withdrawn, they write: “Where there is a proportion between benefits and burdens (as judged primarily by the patient), an intervention is deemed to be proportionate (or ordinary) and morally obligatory. When there is not a proportion between benefits and burdens, the intervention is judged to be disproportionate (or extraordinary) and not morally obligatory.”

Hamel and Walter then identify the big question:

Should artificial nutrition and hydration be considered benefits solely because they achieve their physiological purpose (i.e., sustain life)? In other words, is life…without consciousness a benefit to the patient? Or should benefit be understood more broadly (e.g., alleviating symptoms, improving the patient’s condition, restoring the patient to health)? Furthermore, in the assessment of burdens, is it legitimate to consider the burdens of the patient’s condition (or the burdens of the patient’s life as a result of his or her condition), as some argue, or may one only consider the burdens of the treatment itself?

It is clear that this way of framing the question of benefits and burdens takes us back to the disputed question: are human beings bodily beings and is their bodily life intrinsically good? An affirmative answer to this question, I believe, requires that one consider the life sustaining effects of ANH as a benefit, even if it is limited in scope, and similarly require that one not consider the patient’s life in PVS as a burden that can figure into one’s analysis. That ANH keeps the patient alive cannot be considered a burden, for it is not the condition for an absence of a good, but rather for the limited presence of one.

But here is where the debate over nutrition and hydration for patients in PVS really does overlap with our growing understanding of the avenues for fulfillment available to patients in disability. For a lack of imagination can lead us to fail to see real opportunities for benefit for this patient, even when she is genuinely incapable of conscious response. Continued care of patients in PVS is a form of fidelity and solidarity to them; it says, “I continue to care about you as a person.” And that fidelity and solidarity is, like the preservation of their life, a genuine benefit to the patient, even when it is not experienced as such.

There are, then, at least these two benefits in providing ANH to patients in PVS: the preservation of their life, and the preservation of our solidarity with those patients. So what are the relevant burdens in providing ANH? They do not, apparently, include discomfort for the patient; nor does ANH bring with it much more than a minimal degree of risk of other health complications. There are, in short, few burdens for the patient.

For the caregiver, the burdens are of two kinds. One is the financial burden. If that care is in the hospital, the bill can be significant, and it is reasonable to think that cost is a factor to consider in judging the proportion of benefits to burdens. The argument is thus made that ANH may be withdrawn in order to avoid incurring this financial burden.

Against this argument, a definitive objection has been made by a number of moral philosophers. The cost of ANH is, among the various costs associated with care for a PVS patient, relatively small. If someone offered, for example, to pay for precisely that amount out of what you were paying for the care of a loved one in PVS, the financial relief would be real, but not terribly significant.

So how, then, does withdrawing ANH—and hence no longer paying for it—contribute to the relief of the overall financial burden experienced by caregivers? Only, it appears, by bringing about the death of the patient, for when the patient is dead none of the other costs will anymore be incurred. If this is the case, though, then the choice to withdraw really is homicidal—it is a choice to kill in order to alleviate financial burdens.

Could the entire cost of keeping the patient alive be refused, without choosing to kill? They could, but only if the choice were, not to refuse to feed in order to avoid the costs, but to refuse to provide all of the care that incurs the sum total of the costs—that is, the choice, in order to not be a choice to kill, must be a choice to abandon the patient in total.

Could this choice be reasonable? Perhaps the choice to abandon can be reasonable in some extreme circumstances. Consider a nomadic tribe in the desert, whose care for their sick threatens their ability to search for desperately needed water. The choice to abandon might be both non-homicidal and reasonable, given the emergency nature of their situation.

But are we really in such circumstances? We are the wealthiest nation on earth, and those whose personal funds are, admittedly, depleted by care for the permanently unconscious will eventually be given aid by the state. There seems to be little justification for abandonment.

Nevertheless, we are generally not obligated to bankrupt ourselves in caring for others, and this has suggested to many that care less expensive than hospital, and even hospice, care should be pursued. In particular, although it would be less adequate in some ways, and might have the side effect of shortening the patient’s life, when possible, care should be provided at home in a way consistent with the caregiver’s resources.

This leads to the second way in which care for PVS patients can be burdensome: the care can be time-consuming, emotionally demanding, and exhausting, and this would certainly be the case were it carried out at home. Can ANH be withdrawn in order to refuse these burdens?

The following distinction might help to clarify the question. Amongst the burdens of care, there are those that must be considered in order to determine whether we have an obligation or not—cost of a treatment, for example, is one such burden. Such burdens should be considered and judged in light of both expected benefits and of overall responsibilities, such as the responsibilities of parents to children, spouse to spouse, and child to parent.

Another set of burdens are those that are the inevitable result of accepting one’s responsibilities. Meeting one’s obligations is often difficult, emotionally draining, and time-consuming. But that it would be so to meet one’s responsibilities does not seem like a reason for denying the responsibilities, since it is precisely because of one’s responsibilities that one has these burdens.

These burdens can surely appear overwhelming, and their reality should not be understated. But perhaps we should once again turn to Rom Houben. Houben’s patience over a 20-year span is nearly inconceivable to most of us; yet some are called to this virtue in their care for the lives of others who, while profoundly disabled, are nevertheless human beings whose humanity makes a moral demand on us: never to kill, and always to treat them with the fairness due to beings equal in moral nature with ourselves.