Q: Is it ever legitimate to remove or withhold life-sustaining procedures from a patient in order to save excessive expenses to persons other than that patient (e.g., the patient's family, the community)? -- W.G., Denver, USA
E. Christian Brugger offers the following response:
A: Given the danger of unfair rationing posed by the implementation of the Obama federal health care law, the question of whether others may legitimately decide whether I receive life-sustaining care promises to become menacingly pertinent. Would it be licit, for example, for a committee of physicians, or a hospital ethics board, or, heaven forbid, a gang of Washington bureaucrats, to decide that some needed but costly medical treatment, because it promises me too little quality of life over too short a time, should be withheld or removed from me? The question here is "who decides?"
What's not being questioned is the basic ethical legitimacy of patients refusing life-support. On this, there is no serious debate. In the Catholic Church over the past 30 years norms for the legitimate refusal of life-support have been formulated multiple times. In one place, the Ethical and Religious Directives for Catholic Healthcare Services (ERDs) of the USCCB, the norm is worded as follows:
"A person may forgo extraordinary or disproportionate means of preserving life. Disproportionate means are those that in the patient's judgment do not offer a reasonable hope of benefit or entail an excessive burden, or impose an excessive expense on the family or the community" (ERD, No. 58).
The directive states clearly the underlying norm: disproportionate means rightly may be refused. But notice the important words, "in the patient's judgment." The patient -- not the family, a hospital ethics committee or even (though you might find this startling) the Secretary for Health and Human Services -- should decide whether or not a means is disproportionate. The ERD identifies futility (no "reasonable hope of benefit"), the burden threatened, and excessive expense as legitimate grounds for making that judgment. And judging rightly in these matters may require counsel from experts and the advice of loved-ones. But the final judgment is for the patient to make.
Does the bare fact alone that patients decide for themselves make their decisions morally upright? Of course not. They might be inordinately influenced by depressive mental states, morbid fear, self-loathing, or a misguided sense of their own "right-to-die." Still, the decision rests with them. What's the basis for this norm?
Bioethics textbooks refer to it as the principle of "respect for patient autonomy." The concept of "autonomy" can be slippery and secular bioethicists tend to use it to justify a multitude of sins. But rightly construed it's perfectly legitimate. It means simply the quality of being self-governing. Humans, unlike dogs (or at least unlike my enormous Alaskan Malamute, Wolfgang), are intelligent and free. Consequently, they can and do make for themselves free and informed decisions. In other words, they are self-governing (or self-determining, or in self-possession, or, as Aquinas says, self-moving) and, therefore, responsible. This status of being free and self-possessing is, in the Christian philosophical tradition, precisely the status of a person. In this sense, we can say persons are autonomous.
Translated into an ethical directive, this means that competent adults should be left free to make their own healthcare decisions. It follows that patients should be adequately told whatever they need to know to make informed decisions about their health care (especially about treatments bearing upon the end-of-life); and they should be left free to make those decisions. To withhold information necessary for informed consent, or to impose upon patients a decision against their consent, disrespects their status of being free and self-possessing, that is, violates their autonomy.
But isn't this all falsified by the behavior of embryos, fetuses, babies, small children and severely cognitively impaired adults (and many college students), who manifestly don't make for themselves intelligent and free decisions? No, it is not falsified. Although they cannot, or cannot yet, exercise intelligence and free choice, they are still, all of them, humans. They are by definition -- following Aristotle -- animals of the rational type (and following Sacred Scripture, creatures made in God's image and likeness). By nature, embryos, babies and mentally disabled patients are rational beings -- persons, although their cognitive functions may lack development or be disabled. So they always should be respected precisely as persons. Proxy decision makers therefore have a duty to respect the rightful decisions of those for whom they are proxies. If they must make decisions for patients without knowledge of the patients' wills, they should place themselves in the position of the patients and ask themselves: "in this situation, how would I want to be treated?"
How then should we understand ERD 58 which says that a patient may decide to forgo life-support if it imposes an excessive expense on the family or the community? In considering whether or not to accept or continue some treatment, a patient may consider not only the burden that the cost of that treatment would impose on himself, but also the burden, including financial burden, it imposes on his family, or even the wider community. And he may forgo that treatment intending to free his family or community from that burden. It should be said, however, that his life is never rightly considered a burden from which he intends to relieve his family or community. This would be suicide. But his acceptance of a hastened death as a result of refusing costly treatment can be an act of mercy (perhaps even justice) towards his loved ones. The Vatican Declaration on Euthanasia writes: "Such a refusal is not the equivalent of suicide; on the contrary, it should be considered as an acceptance of the human condition, or a wish to avoid the application of a medical procedure disproportionate to the results that can be expected, or a desire not to impose excessive expense on the family or the community" (CDF, 1980, part IV)
If a patient is permanently unconscious, a proxy caregiver may execute a pre-written order of the patient's for the removal of futile or burdensome procedures. One should never consent, however, to execute an order to remove means of care that are morally required, such as the feeding and hydrating of patients whose bodies can assimilate food and water.
Would it ever be legitimate for the family of a patient to make the decision that some form of life-support is "disproportionate" exclusively on the grounds that it is excessively expensive to the family? After what was said above -- namely, that the patient, not the family, should decide -- it would appear not. But I would like to qualify this.
I would say that if the patient has no advanced directive, and the form of life-support is not medically futile (e.g., ventilator use for patients with advanced Lou Gehrig's Disease), then ordinarily, even if the cost is burdensome, it would not be permissible to make a judgement for a patient that a treatment is "disproportionate" unless the caregivers know that this conforms to the will of the patient (even if that will is not expressed on an advanced directive).
If family members do not know the patient's clear will on the matter, but they are confident that removal of life-support would not be contrary to the patient's will, then, in my opinion, it would only be legitimate to remove life support if the financial burden on the family was very grave, and then, only if the family could say honestly that such a decision would be expressive of the patient's will had he the opportunity to express his will.
 Cf. John Paul II, Encyclical Letter "Evangelium Vitae" (1995), No. 77; Congregation for the Doctrine of the Faith, Declaration on Euthanasia (1980), part IV; United States Conference of Catholic Bishops, Ethical & Religious Directives for Catholic Health Care Services, 5th ed. (2009), Nos. 56-58, esp. 57.
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E. Christian Brugger is a Senior Fellow of Ethics at the Culture of Life Foundation and is an associate professor of moral theology at St. John Vianney Theological Seminary in Denver, Colorado. He received his Doctorate in Philosophy from Oxford in 2000.
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