Methylmalonic Acidemia is initially an elusive genetic anomaly difficult to diagnose but can have varied outcomes. Depending on the level of deficiency in apoenzyme MCM or diminished synthesis of its cofactor 5’-deoxyadenosylcobalamin, prognosis can be poor with one extreme being only a few months to live, or the prognosis can be hesitantly optimistic with a managed diet. MMA is much more common in Middle Eastern countries including Palestine where the major religion is Sunni Islam. Previously, there has been no consensus surrounding aggressive treatment decisions for neonates afflicted with MMA, but this article attempted to apply Richard McCormick’s quality-of-life criteria and Peter Clark’s diagnostic treatment categories to provide a succinct analysis of viable options that are culturally sensitive to Palestinian traditions. Parents should collaborate with health care professionals to consider their child’s potential for human relations through an objective lens of the “best-interests” of the newborn. In doing so, parents can reach morally justified decisions to forgo or pursue life-sustaining interventions on a case-by-case basis.
1The structure and individual components that makeup McCormick's moral criterion for decision-making are normative; they center on what “ought” to be the case, not what “is” the case. By normative McCormick means what the never-competent patient would want because he or she “ought” to want it. The never-competent patient “ought” to make this choice because it is in his/her (best interests”. For a more detailed analysis of McCormick's position on a normative understanding of his patient-centered approach.
2Ethicist Robert Weir disagrees with McCormick on this point. Weir argues that the quality-of-life criterion and best interests criterion are distinct and separate. McCormick responds to Weir by stating: I believe Weir is wrong when he asserts that for those who use quality-of-life assessment, >it is not necessary to consider the best interest of the neonate. It is precisely because one is focused on best interests that qualitative considerations cannot be ignored but indeed are central. Weir is clearly afraid that quality-of-life considerations will be unfair. But they need not be. It all depends on where the line is drawn. I am all the more convinced of the inseparable unity and general overlap of best interests and quality-of-life considerations when I study Weir's clinical applications of his ethical criteria”.
3It should be noted that McCormick's understanding of “best interests” is grounded in his “revised” natural law position. I 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”.
4It should be noted that when McCormick refers to benefits in his “best interests” category it is not restricted to medical benefits. Benefits also apply to social and familial benefits. This notion of “benefit” originates in Pellegrino's four components of “best interests” that McCormick has incorporated into his “best interests” category. For a more detailed analysis of Pellegrino's position.
5This 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.
6McCormick quotes Pius XII as saying that an obligation to use any means possible would be too burdensome for most men and would render the attainment of the higher, more important good too difficult.” Pius XII, (The 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.
7The potential for human relationships is based in the Catholic tradition. McCormick bases this potential for human relationships in the Catholic tradition. 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 “higher” 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.
8Both Leonard Weber and John Connery have criticized McCormick's quality-of-life criterion.
9“They 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”.
10It should be noted that the term “medically 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.
11McCormick writes: “A 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”.
12McCormick further states: “We 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 ”.
13McCormick further states that: “It 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”.
14McCormick 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 “reasonable” (benefit) and “excessive” (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 “what 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.
15Besides 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 “medically indicated” and a patient's right to refuse treatment . Robert Veatch maintains that the terms “ordinary” and “extraordinary” are “extremely 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.
16The Congregation concludes that, “it will be possible to make a correct judgment as to the means by studying the type of treatment being used, its degree of complexity or risk, its cost and possibilities 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”.
17Ethicists Warren Reich, John Connery SJ, Leonard Weber, and Donald McCarthy disagree with McCormick's interpretation of the tradition on the benefit-burden distinction. Ethicist Richard Sparks writes: For 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”.
18For 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 “predictive 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.
19McCormick writes: It 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 for the mongoloid infant. The task ahead is to attach relational potential to presumptive biological symptoms for the gray areas between such extremes.
20This 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.
21For a more complete analysis of these five diagnostic categories refer.
22It 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 “best 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.
Citation: Clark PA, Myers AT (2017) To Treat or Not To Treat: The Case of Methylmalonic Acidemia. J Neonatol Clin Pediatr 4: 019.
Copyright: © 2017 Peter A. Clark, et al. This is an open-access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited.