McCormick will determine how treatment decisions are made for handicapped newborns by proposing his normative understanding of best interests which evolves gradually into his quality-of-life criterion. This is a patient-centered, teleological assessment, which is based on a normative understanding of what reasonable persons ought
to choose in a particular situation for the never-competent patient 1
. It appears that McCormick's quality-of-life criterion is nothing more than a further specification of his normative understanding of “best interests” 2
. McCormick has a normative understanding of “best interests” because, “as social beings, our good, our flourishing (therefore, our best interests) is inextricably bound up with the well-being of others” 3
. The “best interests” category is a composite category that involves quality-of-life considerations, benefit-burden considerations, and the use of proportionate reason as a tool for establishing what is promotive or destructive for the good of the person integrally and adequately considered 4
. McCormick understands “quality of life” to be an elusive term whose meaning varies according to context. However, at a more profound level, when the issue is preserving human life, the term assumes a more basic meaning. “Just as life itself is a condition for any other value or achievement, so certain characteristics of life are the conditions for the achievement of other values. We must distinguish between two sets of conditions: those that allow us to do things well, easily, comfortably, and efficiently, and those that allow us to do them at all” . The quality-of-life criterion is ethically significant for parents and health care professionals because it represents not only the value of the whole person, but it affirms that respect for the human person entails considering all the relevant factors and circumstances that are involved in any situation.
There are real difficulties in trying to establish a perfectly rational criterion for making quality-of-life judgments. To make his quality-of-life criterion more concrete, McCormick will establish two guidelines and four norms that will further specify his criterion. The first guideline developed for dealing with never-competent patients focuses on the potential for human relationships associated with the infant's condition. By relational potential McCormick means “the hope that the infant will, in relative comfort, be able to experience our caring and love” . Specifically, he proposes that “if a newborn baby had no potential for such relationships or if the potential would be totally submerged in the mere struggle to survive, then that baby had achieved its potential and further life-prolonging efforts were not mandatory, that is, would no longer be in the best interests of the baby” . Therefore, according to this guideline, when a never-competent patient, even with treatment, will have no potential for human relationships, the appropriate decision-makers can decide to withhold treatment and allow the patient to die5
. McCormick claims this quality-of-life approach has its foundation in the traditional ordinary-extraordinary means distinction that was later clarified by Pius XII 6
. This is not an easy guideline to apply, especially in the case of never-competent patients. In essence, this guideline requires that the appropriate decision-makers must be able to determine if a minimally accepted “quality of life” can be expected. This determination ought
to be made on the basis of the never-competent's “best interests” understood normatively. This guideline does not depreciate the value of the never-competent individual but affirms that a genuine respect for the person demands attention to the prospects held out by continued life 7
This guideline of the potential for human relationships has been criticized for being too general and open to possible abuse [20,22]8
. McCormick himself stated when he advanced this guideline that it was “general and rather vague. But this is the way it is with all moral norms” 9
. Despite being convinced that this guideline is fundamentally sound, McCormick understood that he must further concretize it. Specifically, there are those circumstances when the never-competent patient has the potential for human relationships, but the underlying medical condition is critical and will result in imminent death, or after treatment has been initiated it becomes apparent that the treatment is medically futile 10
. In these two situations it is clear that, besides the potential for human relationships, McCormick must incorporate an additional guideline that can weigh the benefits and burdens of certain treatments.
The second guideline of McCormick's quality-of-life criterion is the benefit-burden evaluation. “Where medical procedures are in question, it is generally admitted that the criterion to be used is a benefits-burdens estimate . . . The question posed is: Will the burden of the treatment outweigh the benefits to the patient? The general answer: If the treatment is useless or futile, or it imposes burdens that outweigh the benefits, it may be omitted” . As is the case with his first guideline, McCormick claims the benefit-burden evaluation emerges out of the “ordinary-extraordinary means” distinction.
McCormick believes that his notion of benefit-burden evaluation within his quality-of-life criterion is a logical development of the “ordinary-extraordinary means” distinction or what he refers to as an extension of the tradition into new problem areas 11
. McCormick believes that the “ordinary-extraordinary means” distinction has an honorable history and an enduring validity. However, he argues that these terms “summarize and promulgate judgments drawn on other grounds. It is these ‘other grounds' that cry out for explication” [18, 19]12
To further explain these “other grounds,” McCormick reformulates the “ordinary-extraordinary means” distinction by advancing his benefit-burden evaluation. An extraordinary means is one that offers the patient no real benefit, or offers it at a disproportionate cost. For McCormick, one is called to make a moral judgment: Does the benefit of a proposed medical intervention really outweigh the harm it will inevitably produce? This is a quality-of-life judgment. The benefit-burden interpretation is not a departure from the Catholic tradition. It is a reformulation of the tradition in order to deal with contemporary bioethical problem areas 13
The reason for this reformulation of the tradition is that over the centuries the “ordinary-extraordinary means” distinction has become less objective and more relative because medicine and technology have become more sophisticated. The medical profession is committed to curing disease and preserving life. Today, we have the medical technology to make this commitment a reality. However, McCormick argues that “this commitment must be implemented within a healthy and realistic acknowledgment that we are mortal” . Therefore, there is a need to reformulate the basic value of human life under new circumstances. For many contemporary ethicists the traditional terminology of ordinary-extraordinary means has outlived its usefulness and could take us only so far, especially in the case of handicapped newborns 14
. Focusing on the value of human life, McCormick sought to reformulate the “ordinary-extraordinary means” distinction without abandoning the tradition. Contemporary medical problems no longer only concern newborns for whom biological death is imminent. Modern medicine and technology have the ability to keep almost anyone biologically alive. Therefore, a gradual shift has occurred from the means to reverse the dying process to the quality of life sustained and preserved as the result of the application of medical technology . Today, because of the advancements in medicine and technology, the focus is on the quality of life thus saved that establishes a means as extraordinary.
To address this shift in the problem from means to quality of life preserved, McCormick has reformulated the “ordinary-extraordinary means” distinction to mean the “benefit-burden evaluation” [28-30]15
. For McCormick, “it is clear that the judgments of burden and benefit are value judgments, moral choices. They are judgments in which, all things considered, the continuance of life is either called for or not worthwhile to the patient” . In making these moral judgments one can see how proportionate reason is used as a tool for determining whether a particular life-sustaining treatment is a benefit or a burden, that is, in the “best interests” of the never-competent patient and those involved in the decision-making process.
The benefit-burden evaluation was also proposed by the Sacred Congregation for the Doctrine of the Faith in its Declaration on Euthanasia
and by the President's Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research in its Deciding to Forego Life-Sustaining Treatment
. The issuance of the Declaration on Euthanasia
in 1980 by the Magisterium gave McCormick further justification for incorporating the benefit-burden evaluation into his quality-of-life criterion 16
. It also gave him further proof to anchor his guideline and thus his criterion for treatment decisions in the benefit-burden evaluation. Medical treatments are not morally mandatory if they are either gravely burdensome or useless for the patient [20,34-37]17
. McCormick has a normative understanding of medical futility, which considers whether the agreed on potential effect is of any value and benefit to the newborn, that is, in the newborn's “best interests” normatively understood. For McCormick, a medical treatment might be successful in achieving an effect (physiologically effective), but the effect might not be beneficial to the patient (qualitatively effective). Since the goal of medical treatment is to benefit the patient, it follows that nonbeneficial treatment is medically futile [38-40]18
. This entails making a value judgment and the evaluation of whether a treatment is a benefit or a burden can be open to personal interpretation. That means these evaluations can be “borderline and controversial” .
The two guidelines of McCormick's quality-of-life criterion, even though he argued they were both reformulations of the “ordinary-extraordinary means” distinction, continued to be criticized by ethicists Leonard Weber, John Connery and Warren Reich for being too relative, subjective and consequential in nature. To address this criticism McCormick, along with ethicist John Paris, S.J., proposed the following norms that would further specify the capacity for human relationships and the benefit-burden evaluation:
1. Life-saving intervention ought
not to be omitted for institutional or managerial reasons. Included in this specification is the ability of this particular family to cope with a badly disabled baby.
2. Life-sustaining interventions may not be omitted simply because the baby is retarded. There may be further complications associated with retardation that justify withholding life-sustaining treatment.
3. Life-sustaining intervention may be omitted or withdrawn when there is excessive hardship on the patient, especially when this combines with poor prognosis.
4. Life-sustaining interventions may be omitted or withdrawn at a point when it becomes clear that expected life can be only for a relatively brief time and only with continued use of artificial feeding .
These norms or rules do not mandate certain decisions, nor do they replace the role of prudence and eliminate conflicts and decisions. They are simply attempts to provide outlines of the areas in which prudence should operate .
McCormick further specified his quality-of-life criterion to help enlighten medical situations for the appropriate decision-makers. However, guidelines, even specified by concrete norms, cannot cover all circumstances and every possible situation. McCormick's quality-of-life criterion assists the appropriate decision-makers by giving them a range of choices. As rational persons, it is up to the appropriate decision-makers to examine each situation using proportionate reason, and the guidelines advanced by McCormick in his quality-of-life criterion, to determine what is in the “best interests” of the never-competent patient and those involved in the decision-making process. McCormick makes clear that no criterion can cover every instance where human discretion must intervene to decide. There is always the possibility of human error because we are finite and sinful people. For McCormick, “the margin of error tolerable should reflect not only the utter finality of the decision (which tends to narrow it), but also the unavoidable uncertainty and doubt (which tends to broaden it)” . With the assistance of these guidelines and norms, McCormick believes that the appropriate decision-makers will be given the necessary guidance to act responsibly.
To assist parents and health care professionals further in medical decision-making for handicapped newborns five specific diagnostic treatment categories of handicapped newborns have been established. These categories attempt to encompass, as far as possible, the entire spectrum of handicapped newborns. They are based on McCormick's moral criterion of the potential for human relationships.
McCormick has plotted the two extreme positions on this spectrum of handicapped newborns, but has left the “conflictual middle,” to be filled in by health care professionals and bioethicists 19
. These diagnostic categories will attempt to complete the “conflictual middle”. The “conflictual middle” pertains to those neonatal anomalies that fall into the “gray area” of treatment decisions20
. These diagnostic treatment categories have been arranged in a way that demonstrates the application of McCormick's “best interests” category. There is a logical progression on the spectrum from the newborn who does not warrant medical treatment to the newborn who does warrant medical treatment.
The five diagnostic treatment categories are:
1. The handicapped newborns whose potential for human relationships is completely nonexistent.
2. The handicapped newborn who has a potential for human relationships but whose potential is utterly submerged in the mere struggle for survival.
3. The handicapped newborn who has a potential for human relationships but the underlying medical condition will result in imminent death.
4. The handicapped newborn who has the potential for human relationships but after medical treatment has been initiated, it becomes apparent that the treatment may be medically futile.
5. The handicapped newborn who has the potential for human relationships and has a correctable or treatable condition 21
Establishing a full set of diagnostic treatment categories is not a panacea for determining treatment decisions for handicapped newborns. Not all medical conditions can be placed in specific categories; there is a marked difference in the severity of conditions within each category. Not all health care professionals or even bioethicists could or would agree to these specific categories. Nevertheless as McCormick argues, “we ought
to attempt, as far as possible to approach neonatal disabilities through diagnostic categories, always realizing that such categories cannot deflate important differences and that there will always remain gray areas” . The establishment of these five diagnostic treatment categories is an attempt to meet the challenge set before health care professionals and bioethicists to assist parents and medical professionals in making treatment decisions for handicapped newborns.