Decision-Making in Neonatology: An Ethical Analysis from the Catholic Perspective

Dramatic advances in neonatal medical information and technology occur daily and these advances are being implemented almost immediately. Despite the dramatic technological advances, diagnostic and prognostic certainty for many neonatal conditions remains illusive. As a result, the appropriate decision-makers have to decide whether some handicapped newborns, such as those with congenital anomalies, low-birth-weights, and genetic defects, should be treated aggressively or not at all. This uncertainty has led to many handicapped newborns with serious congenital anomalies being treated aggressively. This treatment prolongs the lives of many newborns when in the past they would have been allowed to die. Such life-prolonging treatment decisions have far-reaching ramifications. One thing that is clear to serious observers in the field is that the implementation of medical advances and technology for some newborns is a mixed blessing at best. Despite proposed federal regulations (1984 Child Abuse Law)1 and medical guidelines (American Academy of Pediatrics) 2 that have helped to clarify treatment issues, there is still no consensus among responsible decision-makers on a moral criterion to assist parents and health care professionals on treatment decisions. There is general agreement within the medical, legal, and ethical professions that there are some handicapped newborns, in particular situations, whose lives need not be saved. Consensus ends, however, when an attempt is made to determine which specific newborns should receive or not receive medical treatment. This diversity of opinions has brought to the forefront the urgent need for a normative moral criterion to assist decision-makers in their discernment of treatment decisions for these never-competent patients.3


Introduction
Dramatic advances in neonatal medical information and technology occur daily and these advances are being implemented almost immediately.Despite the dramatic technological advances, diagnostic and prognostic certainty for many neonatal conditions remains illusive.As a result, the appropriate decision-makers have to decide whether some handicapped newborns, such as those with congenital anomalies, low-birth-weights, and genetic defects, should be treated aggressively or not at all.This uncertainty has led to many handicapped newborns with serious congenital anomalies being treated aggressively.This treatment prolongs the lives of many newborns when in the past they would have been allowed to die.Such life-prolonging treatment decisions have far-reaching ramifications.One thing that is clear to serious observers in the field is that the implementation of medical advances and technology for some newborns is a mixed blessing at best.Despite proposed federal regulations (1984 Child Abuse Law) 1 and medical guidelines (American Academy of Pediatrics) 2 that have helped to clarify treatment issues, there is still no consensus among responsible decision-makers on a moral criterion to assist parents and health care professionals on treatment decisions.There is general agreement within the medical, legal, and ethical professions that there are some handicapped newborns, in particular situations, whose lives need not be saved.Consensus ends, however, when an attempt is made to determine which specific newborns should receive or not receive medical treatment.This diversity of opinions has brought to the forefront the urgent need for a normative moral criterion to assist decision-makers in their discernment of treatment decisions for these never-competent patients. 3For a more detailed analysis of the 1984 Child Abuse Law, see Department of Health and Human Services, AChild Abuse and Neglect: Prevention and Treatment,@ reprinted from The Federal Register 50 (April 15, 1985), no.72: Rules and Regulations, part 1340, 14887-14892.mechanical ventilation to give the medical team additional time to confirm the diagnosis.Besides mechanical ventilation the child also received artificial nutrition and hydration through a feeding tube and was kept unconscious and sedated for comfort.After numerous consultations from various pediatric specialists the medical team decided that to continue aggressive medical treatment was futile and only prolonged the child's dying process.The child's mother was unsure if withholding aggressive medical treatment was ethical and sought additional guidance.
Thanatophoric dysplasia (TD), also called thanatophoric dwarfism, was discovered in 1967 by Pierre Maroteaux and his coworkers who used the Greek term "thanatophoric" meaning death-bringing.It is the most common form of skeletal dysplasia in humans.It occurs in 3 to 4 per 100,000 live births and is due to autosomal dominant sporadic de novo mutations in the fibroblast growth factor receptor 3 (FGFR3) gene mapped to chromosome band 4p16.3.This gene codes for the FGFR3 transmembrane receptor expressed largely by skeletal and brain tissues in the developing fetus where it is involved with growth regulation.[3] Male and female fetuses are equally affected.There are two subtypes, TD1 and TD2, based on geneticphenotypic differences, although features may overlap.TD1 is associated with radiographic findings of short curved ("telephone receiver") femurs, with or without a clover-leaf skull deformity.TD2 is associated with straight, longer femurs, and clover-leaf skull.The genetic mutation responsible for TD1 leads to an arginine to cysteine amino acid substitution at position 248, whereas for TD2, it leads to a lysine to glutamine substitution at position 650 of the FGFR3 receptor.5However, the distinction does not alter the management.
Neonates with TD invariably develop severe respiratory distress at birth due to lung hypoplasia requiring ventilation.The only means available to treat this condition is respiratory support.If the diagnosis is known ante-natally, then the parents would have the option of withholding active resuscitation.However, if the diagnosis is uncertain then, active resuscitation will buy time for further investigations until the diagnosis is determined.Physical findings manifest at birth include a bulging forehead, proptosis, flat nasal bridge, narrow chest, protuberant abdomen, and short limbs.A babygram should be done which may reveal characteristic telephone receiver femurs, flaring of the long bone metaphyses, short ribs, flat vertebral bodies, widened intervertebral disk spaces, a short pelvis with small sacroiliac notch, and cloverleaf skull deformity.6 Most babies with TD die within the first few hours of life from respiratory insufficiency secondary to reduced thoracic capacity or compression of the brainstem.Management concerns are limited to extreme life support measures for the newborn.In the rare cases of long-term survival (a 4.7 year male and 3.7 year female), [4] the management consists in treatment of manifestations: respiratory support (tracheostomy, ventilation); medication to control seizures; shunt placement when hydrocephaly is identified; suboccipital decompression for relief of craniocervical junction constriction; hearing aids when hearing loss is identified and orthopedic evaluation upon development of joint contractures of joint hypermobility.[5]  This case is an excellent example of how parents in consultation with health care professionals struggle to decide whether certain medical treatments are medically proportionate or disproportionate and in the best interest of the child.

McCormick's criterion
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. 7It appears that McCormick's quality-of-life criterion is nothing more than a further specification of his normative understanding of best interests. 8McCormick 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". 9The 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". 10McCormick understands quality of life to be an  McCormick, AThe Rights Of The Voiceless,@ How Brave A New World?, 101.It should be noted that McCormick=s understanding of Abest interests@ is grounded in his Arevised@ natural law position.AI believe we do have reasons for assuming we know in many cases what an incompetent would want.We may assume that most people are reasonable, and that being such they would choose what is in their best interest.At least this is a safe and protective guideline to follow in structuring our conduct toward them when they cannot speak.The assumption may be factually and per accidens incorrect.But I am convinced that it will not often be. . . .I believe most of us want to act reasonably within parameters that are objective in character, even though we do not always do so.Or at least I think it good protective policy to assume this.@Ibid., 104-105.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".[6] 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". 11Specifically, 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".[7]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 die. 12McCormick claims this quality-of-life approach has its foundation in the traditional ordinary-extraordinary means distinction that was later clarified by Pius XII. 13 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 neverhis Abest interests@ category.For a more detailed analysis of Pellegrino=s position, see Edmund Pellegrino, M.D., AMoral Choice, The Good Of The Patient And The Patient=s Good,@ in Ethics And Critical Care Medicine, eds.J. C. Moskop & L. Kopelman (Dordrecht, Netherlands: D. Reidel, 1985), 117-138.

11
McCormick, ATo Save Or Let Die,@ 351. 12 This does not mean that once a decision has been made to forego or discontinue treatment, that the dying person is not treated with dignity and respect.For McCormick, even though a person has reached his or her potential and no treatment is recommended, as members of society we still have a moral obligation to give comfort to the person while he or she is in the dying process.That comfort would consist in palliative care.Palliative care is aimed at controlling pain, relieving discomfort, and aiding dysfunction of various sorts.

13
McCormick quotes Pius XII as saying that an obligation to use any means possible Awould be too burdensome for most men and would render the attainment of the higher, more important good too difficult.@Pius XII, AThe Prolongation Of Life,@ Acta Apostolicae Sedis 49 (1957): 1,031-1,032.McCormick understands Pius XII to say that certain treatments may be refused because it would lead to a life that lacks the proper quality.Leonard J. Weber, Who Shall Live?: The Dilemma Of Severely Handicapped Children And Its Meaning For Other Moral Questions, (New York: Paulist Press, 1976), 69.competent individual but affirms that a genuine respect for the person demands attention to the prospects held out by continued life. 14is guideline of the potential for human relationships has been criticized for being too general and open to possible abuse. 15McCormick 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." 16Despite 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. 17In 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".[8] As The Christian story does not yield concrete answers and fixed rules, but it does yield various perspectives and insights that inform human reasoning.One such insight is that human life is a basic good but not an absolute good.Since human life is a relative good, and the duty to preserve it is a limited one, then it is not always morally obligatory to use all means to preserve human life if a person cannot attain the higher more important good.For McCormick, the Ahigher@ more important good is the capacity for relationships of love.The core of this guideline is developed from the love commandment found in the New Testament.AThey really root in general assertions that must be fleshed out by experience, modified by discussion and consultation, propped up and strengthened by cautions and qualifications.It is in the process of their application that moral norms take on added concreteness.@McCormick,ATo Save Or Let Die: State Of The Questions,@ America 131 (October 5, 1974): 171.17 It should be noted that the term Amedically futile@ is an elusive and ambiguous term.There are four major types of medical futility.First, physiological futility--an intervention cannot lead to the intended physiological effect.Second, imminent demise futility--an intervention may be futile if despite that intervention the patient will die in the very near future (this is sometimes expressed as the patient will not survive to discharge, although that is not really equivalent to dying in the near future).Third, lethal condition futility--an intervention may be futile if the patient has an underlying lethal condition which the intervention does not affect and which will result in death in the not too far future (weeks, perhaps months, but not in years) even if the intervention is employed.Fourth, qualitative futility--an intervention may be futile if it fails to lead to an acceptable quality of life.For a more detailed analysis of medical futility, see Baruch A. Brody and Amir Halevy, AIs Futility A Futile Concept?@Journal Of Medicine And Philosophy 20 (April 1995): 126-129.
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. 18McCormick 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". 19To 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. 20e reason for this reformulation of the tradition is that over the centuries the ordinaryextraordinary 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."[9]  Therefore, there is a need to reformulate the basic value of human life under new circumstances.For many contemporary ethicists the traditional terminology of ordinaryextraordinary means has outlived its usefulness and could take us only so far, especially in the case of handicapped newborns. 21Focusing on the value of human life, McCormick 18 McCormick writes: AA basic human value is challenged by new circumstances, and these circumstances demand that imagination and creativity be employed to devise new formulations, a new understanding of this value in light of these new circumstances while retaining a basic grasp upon the value.For example, in-vitro fertilization poses questions about the meaning of sexuality, parenthood, and the family because it challenges their very biological roots.@McCormick, AA Proposal For >Quality Of Life= Criteria For Sustaining Life,@ 76.
McCormick, AThe Best Interests Of The Baby,@ 19.McCormick further states: AWe must admit that the terms >ordinary= and >extraordinary= are but code words.That is, they summarize and are vehicles for other judgments.They do not solve problems automatically.Rather they are emotional and mental preparations for very personal and circumstantial judgments that must take into account the patient=s attitudes and value perspectives, or >what the patient would have wanted.=>Ordinary= and >extraordinary= merely summarize other underlying judgments.They say very little in and of themselves.@McCormick, AA Proposal For >Quality Of Life= Criteria For Sustaining Life,@ 77.

20
McCormick further states that: AIt must be remembered that the abiding substance of the Church=s teaching, its rock bottom so to speak, is not found in the ordinary means-extraordinary means terminology.It is found in a basic value judgment about the meaning of life and death, one that refuses to absolutize either.It is that judgment that we must carry with us as we face the medical decisions that technology casts upon us.@McCormick, ATechnology And Morality: An Example Of Medicine,@ 29.Emphasis in the original.

21
McCormick argues there are two reasons for this: First, the terminology too easily hides the nature of the judgment being made.The major reference point in factoring out what is Areasonable@ 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. 22Today, 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. 23For 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." 24In 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. 25The issuance of the Declaration on Euthanasia in 1980 by the Magisterium gave McCormick further justification for incorporating the benefitburden evaluation into his quality-of-life criterion. 26It also gave him further proof to anchor (benefit) and Aexcessive@ (burden) is the patient--his or her condition, biography, prognosis, and values.The terminology, however, suggests that attention should fall on the means in an all too mechanical way.Second, many people misinterpret the terms to refer to Awhat physicians ordinarily do, what is customary.@This is not what the term means.In their ethical sense, they encompass many more dimensions of the situation.Richard McCormick, Health And Medicine In The Catholic Tradition, (New York: Crossroad Press, 1987), 145.

22
McCormick, ATo Save Or Let Die,@ How Brave A New World?, 345.

23
Besides McCormick=s benefit-burden evaluation, other ethicists have suggested various terms to reformulate the ordinary-extraordinary means distinction.Paul Ramsey suggests that the morally significant meaning of ordinary and extraordinary medical means can be reduced almost without remainder to two components--a comparison of treatments to determine if they are Amedically indicated@ and a patient=s right to refuse treatment.See Paul Ramsey, Ethics At The Edges Of Life: Moral And Legal Intersections, (New Haven, CT.: Yale University Press, 1978), 153-160.Robert Veatch maintains that the terms Aordinary@ and Aextraordinary@ are Aextremely vague and are used inconsistently in the literature.@Beneath this confusion he finds three overlapping but fundamentally different uses of the terms: usual versus unusual, useful versus useless, imperative versus elective.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. 27McCormick 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. 28This 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. 29e 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: of using it, and comparing these elements with the result that can be expected, taking into account the state of the sick person and his or her physical and moral resources.@Congregation for the Doctrine of the Faith, ADeclaration On Euthanasia,@ Origins 10 (August 1980): 263.27 Ethicists Warren Reich, John Connery, S.J., Leonard Weber, and Donald McCarthy disagree with McCormick=s interpretation of the tradition on the benefit-burden distinction.Ethicist Richard Sparks writes: AFor Reich, Weber, Connery, and McCarthy the limiting factor is the quality of life, which, if judged to be excessively burdensome, can make the presumably beneficial treatment extraordinary and optional, [sic] must be caused by or directly related to the use of the means contemplated.In other words, >the burden must be the burden of medical treatment, not the burden of handicapped existence.=@Richard Sparks, To Treat Or Not To Treat?: Bioethics And The Handicapped Newborn, (New York: Paulist Press, 1988), 110; see also Donald G. McCarthy, ATreating Defective Newborns: Who Judges Extraordinary Means?@Hospital Progress 62 (December 1981): 45-50; John Connery, S.J., AProlongation Of Life: A Duty And Its Limits,@ Linacre Quarterly 47 (May 1980):, 151-165; Leonard Weber, Who Shall Live?, 88-98; and Warren Reich, AQuality Of Life And Defective Newborn Children: An Ethical Analysis,@ in Decision-Making And The Defective Newborn, ed.Chester A. Swinyard (Springfield, IL.: Thomas, 1978), 488 -511.

28
For McCormick, medical futility is determined by the parents in consultation with the health care professionals, because a determination must be made of the patient=s medical status and an evaluation must be made of the medical intervention.The determination of medical futility entails balancing the values of patients, the values of medicine, and the fact that there is much uncertainty in making Apredictive medical judgments.@McCormick=s notion of medical futility is also rooted in his understanding of the principles of beneficence and nonmaleficence--do no harm to the patient.For a more detailed analysis of medical futility, see James F. Drane and John L. Coulehan, AThe Concept Of Futility: Parents Do Not Have The Right To Demand Medically Useless Treatment,@ Health Progress 74 (December 1993): 32; Robert Veatch and Carol Mason Spicer, AFutile Care: Physicians Should Not Be Allowed To Refuse To Treat,@ Health Progress 74 (December 1993): 22-27 and Glenn G. Griener, AThe Physician=s Authority To Withhold Futile Treatment,@ Journal Of Philosophy And Medicine 20 (April 1995): 209.. 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 had only for a relatively brief time and only with continued use of artificial feeding. 30ese 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. 31Cormick 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)". 32With 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 bioethicsts. 33These diagnostic categories will attempt to complete the conflictual middle.McCormick writes: AIt is the task of physicians to provide some more concrete categories or presumptive biological symptoms for this human judgment.For instance, nearly all would likely agree that the anencephalic infant is without relational potential.On the other hand, the same cannot be said The conflictual middle pertains to those neonatal anomalies that fall into the gray area of treatment decisions. 34These 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.35 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." 36The 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.

Ethical evaluation
In the case of Baby X, the medical professionals have ascertained after five months that any further aggressive medical treatment would be medically futile for this child.According to the physicians, Baby X has severe underdeveloped lungs, ribs too tiny to allow normal breathing and pressure on the spinal cord that disrupts brain signals controlling respiration.
for the mongoloid infant.The task ahead is to attach relational potential to presumptive biological symptoms for the gray areas between such extremes.@McCormick, ATo Save Or Let Die,@ How Brave A New World?, 349-350.

34
This would include anomalies in which the newborn has the potential for human relationships, but the potential is utterly submerged in the mere struggle for survival, or the medical condition will result in imminent death, or it has been determined that further treatment is medically futile.Certain anomalies that would fall within this category would be spina bifida, hypoplastic left heart syndrome, trisomy 13, trisomy 18, Lesch-Nyhan syndrome, etc.Thus, Baby X is in a terminal condition and is slowly suffocating.Mechanical ventilation at this point is only prolonging the dying process.It would appear that Baby X would fit under diagnostic category four.
In this fourth diagnostic treatment category, since the potential for human relationships is present, McCormick's second guideline of his quality-of-life criterion--the benefit-burden evaluation--would be applied to determine whether Baby X ought to be treated.What is to be determined is whether the benefit of the treatment will outweigh the burden to the newborn.If the parents in consultation with the health care professionals determine that further medical treatment would not improve the newborn=s prognosis, or benefit the overall well-being of the newborn, then, all things considered, parents should decide that further treatment would not be in the best interests of the newborn.A newborn diagnosed with thanatophoric dysplasia is in a terminal condition and according to medical authorities, further medical treatment is medically futile, that is, any possible medical effect is of no benefit to the newborn.To support this position McCormick's third norm, that further specifies the burden-benefit evaluation, can be applied."Life sustaining interventions may be omitted or withdrawn when there is excessive hardship, especially when this combines with poor prognosis."Therefore, it appears that further treatment for Baby X is not morally obligatory, because it is a disproportionate means.
The notion of a normative understanding of best interests considers not only the relevant medical facts but also the relevant social and familial factors.Financial and emotional costs ought to be considered.That means, if the social factors are excessive, then the newborn should not and would not want to be treated, because it would place excessive burdens on those who must care for the newborn's existence.What the newborn ought to want should encompass the needs of those who will care for this child.Baby X is in a terminal state and further aggressive treatments will only prolong the dying process.Both social and familial factors ought to play a proportionate role in determining the benefit/burden evaluation. 37 conclusion, when a handicapped newborn has the potential for human relationships but after initiating treatment, it becomes apparent that the treatment is medically futile, parents in consultation with health care professionals are not morally obliged to continue medical treatment.This is a value judgment that is based on McCormick's guidelines of relational potential and benefit/burden evaluation.McCormick's moral criterion sets basic parameters and enlightens the particular medical situation.Ultimately, the parents will use prudence to examine the medical facts and to weigh, all things considered, whether the burdens of treatment outweigh the benefits to the newborn.In this diagnostic treatment category, the burdens and benefits need to be weighed carefully.However, with the severity of this particular medical anomaly the burdens clearly outweigh the benefits to the newborn.

37
It should be noted that McCormick=s position on social and familial factors has been criticized for being too restrictive and deviating from both the Catholic tradition and from his own normative understanding of Abest interests.@McCormick claims that his restrictive notion of social and familial factors, as they pertain to treatment decisions for handicapped newborns, is due to the fact that a broader interpretation could lead to social utilitarianism.This caution is certainly relevant because the possibility of potential abuse is always present.However, the safeguards McCormick has built into his quality-of-life criterion--guidelines and norms--should help to alleviate the possibility of such abuse.In addition, health care professionals serve as a safeguard in that they can act as the newborn=s advocate should they suspect abuse.
Therefore, in the best interests of the newborn, and all concerned, parents in consultation with health care professionals have the moral obligation to forgo or withdraw treatment for a newborn in these circumstances.
McCormick argues that his moral criterion is appropriate for decision-makers because it considers not only the relevant medical facts and the pertinent circumstances of the situation, but also familial and social factors, such as, religious, cultural, emotional, and financial factors.Parents in consultation with health care professionals can best determine what the handicapped newborn ought to want and protect his or her best interests by using McCormick's quality-of-life moral criterion.As reasonable people, parents are most knowledgeable about the family situation into which the newborn is born.This includes knowing the financial, emotional, and social factors.Parents can also weigh and balance the religious and cultural values that inform their decision-making.Health care professionals have the specialized medical knowledge and clinical expertise that can assist parents in the decision-making process.They also have a level of objectivity that parents may lack because of the overwhelming emotional stress of the situation.Together, parents and health care professionals are able to determine what are the appropriate needs of this newborn, to assess these needs, and to determine whether medical treatment is in the best interests of the newborn integrally and adequately considered.

Conclusion
McCormick's moral criterion is appropriate for Christian decision-makers because it emphasizes the reasonable from within a Christian context.It stresses the need for decisionmakers to examine the medical facts, the circumstances of the situation, foreseeable consequences, social and familial factors, and other pertinent data before deciding on an appropriate course of action.McCormick's moral criterion also stresses that these facts are to be considered always within the context of the Christian story, so that the best interests of the handicapped newborn are always promoted and protected.Treatment decisions for handicapped newborns are value judgments that must be based on the appropriate needs of the newborn.These value judgments can possibly become distorted by self-interested perspectives and technological considerations.Christian decision-makers who use McCormick's moral criterion are not immune from making mistakes.We are a finite and sinful people.What is being said is that because the content of this moral criterion is reasonable, and because these decisions are made within the context of the Christian story, less chance exists that such treatment decisions will be pushed to the extremes.McCormick's moral criterion is appropriate for Christian decision-makers because it protects the best interests of the handicapped newborns by promoting value judgments that are grounded in reason and informed by the Christian story.

14
Lisa Sowle Cahill, AOn Richard McCormick: Reason And Faith In Post-Vatican II Catholic Ethics,,@ in Theological Voices In Medical Ethics eds.Allen Verhey & Stephen Lammers (Grand Rapids, MI.: William B. Eerdmans Publishing Co., 1993): 91.The potential for human relationships is based in the Catholic tradition.McCormick bases this potential for human relationships in the Catholic tradition.

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For a more complete analysis of these five diagnostic categories see, Peter A. Clark, To Treat Or Not To Treat: The Ethical Methodology of Richard A. McCormick, S.J.As Applied To Treatment Decisions For Handicapped Newborns, (Omaha, Ne.: Creighton University Press, 2003).

7
The structure and individual components that makeup McCormick=s moral criterion for decisionmaking are normative; they center on what Aought@ to be the case, not what Ais@ the case.By normative McCormick means what the never-competent patient would want because he or she Aought@ to want it.The never-competent patient Aought@ to make this choice because it is in his/her Abest

15
Both Leonard Weber and John Connery have criticized McCormick=s quality-of-life criterion.For a more detailed analysis, see Weber, Who Shall Live?: The Dilemma Of Severely Handicapped Children And Its Meaning For Other Moral Questions (New York: Paulist Press, 1976) and John Connery, AQuality Of Life,@ Linacre Quarterly 53 (February 1986): 26-33.
See Robert Veatch, Death, Dying And The Biological Revolution, (New Haven, CT.: Yale University Press, 1976), 110-112.For further examples, see McCormick, AThe Quality Of Life, The Sanctity Of Life,@ How Brave A New World?, 393-405.