[Howes Contd.] Assessing quality of life as a factor in care decisions is relatively novel, historically medicine was powerless in the face of neonatal life-threatening conditions. In fact, prior to the 1970’s care for imperiled infants entailed little more than attempting to provide a conducive environment for the infant to make necessary physiological adjustments to survive; post-treatment quality of life was irrelevant as most infants simply perished. Modern high-technological neonatal intensive care units first appeared in the 1960’s concomitantly with neonatology, a new subspecialty of pediatrics. The nascent field of neonatology’s ability to treat life-threatening conditions successfully, brought with it the possibility of merely prolonging death, and creating survivors weighed down with severe impairments. The number of hospitals with NICUS has increased rapidly. In 2000 there were 806 hospitals with a NICU and by 2013 that number had increased to 983. Within this context scholars began to expand the categories of benefits and burdens that contribute to determining care, paying particular attention to the type of life achieved through treatment.
One attempt to reflect upon and give value to the type of life a patient would live post treatment manifested itself in quality of life models. These models aimed to evaluate or measure the quality of someone’s lived experience in order to find their true best interest. I will be presenting three differing quality of life theories, individual, social, and relational, in the hopes of demonstrating the diversity of positions and important conversations occurring in the field as it relates to neonatology.
Individual quality of life theories share three core beliefs, the most fundamental being that physical life is a limited value by nature of its relation to other goods such as, social, psychological, and spiritual well-being. Physical life as vital physiological processes has tremendous value, but it is ordered towards and subservient to the achievement of a person’s well-being as a whole (i.e. social, psychological, spiritual, physiological). The second belief is that imperiled infants enjoy moral status, and while different theorist make a distinction between “characteristic qualities that are essential for leading a meaningful personal existence”, the lack of such qualities are not used to deny moral status. Finally, supporters of individual quality of life recognize that there are interests beyond the infants that are valued, such as the interests of the families and societies. This recognition is not, however, an endorsement of allowing social factors to enter into individual care decisions. Two well-known individual quality of life ethicists are Richard McCormick and John Arras. Each share in these fundamental points but differ in the implementation and conclusion in reference to medical decision making. I will explicate Arras’ position followed by McCormicks.
Arras states his position in a 1984 article tilted, “Toward an Ethic of Ambiguity” in which he challenges the common best interest standard of care. Critiquing the Reagan administration’s nondiscrimination principle, which arose in the context of the “baby doe” case, Arras charges that discrimination is not inherently wrong if the criteria for such discrimination is morally significant. The question is whether morally relevant criteria exist to discriminate care between healthy and imperiled newborns. To begin Arras must prove that non-treatment and withdrawal of treatment, leading to the death of the imperiled infant, is an option compared to any quality of life.
Arras believes that situations do exist where it is better for an imperiled infant to die rather than live, namely in extreme cases where the state of the infant, and its future quality of life, challenge the “implicit faith in the conceptual connection” between life and good. In situations of abysmal quality of life, death is a preferable outcome. Opponents of this stance argue that the comparison between life and death is impossible, but Arras maintains, however, that even if the comparison is impossible, avoidance of pain and suffering is still a good to be sought. Life is a value that under normal circumstances must be fought for, but it is not an absolute value to prodigiously devote resources towards.
Establishing death as potentially in the best interest of an imperiled infant, Arras wants to determine the morally relevant criteria for when death is in an imperiled infants best interest. According to Beauchamp and Childress the goal of the best interest standard is to “determine the highest probable net benefit among available options, assigning different weights to interests the patient has in each option balanced against inherent risks, burdens, or costs.” While seemingly a straight forward task, it is complicated because there is no consensus on what burdens should be included in the calculation.
Reflecting upon what burdens ought to be included in best interest calculations Arras rejects social factors and the best interest standard as well. He concludes that to allow social-economic factors to play a role in treatment decisions “would not only be profoundly unjust; it would also most likely impede efforts to improve the plight of the institutionalized, poor, imperiled child.” Social-economic status is not a morally acceptable criterion for discrimination; at the same time, it is morally reprehensible to allow children to live lives of suffering due to life-saving treatment. Avoiding this intractable dilemma requires introducing a supplement to the best interest standard. Arras proposes defining a threshold for the value of life that relies on potential human capabilities. Recalling that life is a good insofar as it allows other human goods to be achieved, lack of fundamental human capacities ultimately renders life worthless. Arras does not make any specific suggestions as to what human traits are weighty enough to determine the value of human life, but nevertheless he argues the alternative, relying on social burdens or treating all imperiled infants, is an untenable solution.
Arras doesn’t explicitly mention healthcare rationing in the referenced essay, but it is fair to point that if his model is adopted the rationing for imperiled infants would be based strictly on their ability or future ability to engage in human activities. The criteria for best interest are clearly based upon a threshold of capability, and if a child does not meet that threshold, the decision to treat is removed from parents and is no longer considered an option.
Another great individual quality of life proponent is Richard McCormick, who called attention to the reality that modern neonatal medicine had shifted the question from, “Can we save this newborn’s life?” to “What kind of life are we saving?” Like Arras, McCormick placed great emphasis on the quality of life resulting from advance lifesaving treatment. Drawing upon the Judeo-Christian tradition McCormick believes that physical life possesses a basic value that should be protected insofar as it contributes to achieving other human values. McCormick borrowed from an address Pope Pius the XII delivered to a gathering of physicians in 1957 where he states that, “Life, health and all temporal activities are in fact subordinated to spiritual ends.” Influenced by this statement, McCormick points to the greatest spiritual commandment, “love the Lord your God with all your heart, and with all your soul, and with all your mind. . . and... love your neighbor as yourself.” This commandment, for McCormick, ultimately rests upon relationship with God, and by extension humankind. The standard used to determine if care is beneficial is built upon the goal of human relationship. If a neonate will have a future devoid of meaningful human relationship, then treatment is not obligated and may be morally prohibited.
McCormick would also create a threshold type mechanism based not necessarily on physical ability, but on the ability to have meaningful human relationships. There is more ambiguity within this criteria for treatment, but less of a utilitarian view of physical life. The decision making would stay with the parents.
Individual quality of life is often praised as a method for determining best interest that mediates the dangers of vitalism and utilitarian calculus. This position is challenged, however, by a group of scholars who believe social factors should be included as relevant in determining best interest. This next section will be centered on Richard Sparks and Charles Camosy, both social quality of life proponents with differing conclusions.
In his book, To Treat or Not To Treat, Richard Sparks presents a compelling argument for, what he refers to, as a “multi-leveled interpretation of the patient’s well-being or personal best interest.” Sparks presents his thesis in two steps, first exploring what is meant by best interest for a patient, and second, how societal burdens measure into and effect the treatment of an individual imperiled newborn. He begins by asserting that the traditional sanctity of life vs. quality of life argument, that the two are mutually exclusive, is a “phantom dichotomy of sorts” because quality of life incorporates rather than opposes sanctity of life. All patients, even those reduced to mere “brain stem –supported life”, are owed the respect that is in accordance with their inherent human dignity. The state of being live-born in the human species is sufficient to grant personhood, inherent value, and legal rights. This personhood is normally sufficient in allowing the use of life-prolonging treatments; it is not, however, a license to absolutize physiological life as the best interest to be sought.
Best interest is in fact much broader, incorporating an array of human goods. One possesses physical life for the purpose of nurturing and furthering “one’s holistic best interest.” Sparks suggests breaking down best interest in the following ways: Psychological or Rational best interest is in terms of mental or upper brain development; Social best interest is in terms of one’s ability to “to ingest, process, and respond to relational input”; spiritual or theological best interest is in terms of life’s orientation towards a fulfillment in God which is reflected in a faith relationship during life, and union with the eternal transcendent in the afterlife. If an infant’s prognosis results in barriers that make the possibility for embodied flourishing little to none, than the norm of providing life-saving treatment is no longer beneficial, and treatment should be foregone.
Having established a standard for determining the best interest of a patient, Sparks shifts to examining the role of social benefits and burdens in assessing potential treatments. While recognizing the many real needs and ethical problems concerning healthcare rationing at every level of society, Sparks explicitly rejects, as a solution, the use of a socially-weighted calculus at the individual patient level. To ration care in individual cases is an egregious breach of the Hippocratic oath, which clearly states that “into whatever homes I go, I will enter them for the benefit of the sick.” Doctors are fundamentally advocates for their patients, not governmental representatives or the business partner of parents. Sparks offers two solutions that allow the rationing of finite resources without placing the integrity of the patient physician relationship into jeopardy. The first possibility is to examine cases at a regional/national/macro level and determine a-priori which type of cases will not be treated due to finite resources; leaving all further treatment decisions patient-centric. The second option entails extending the concept of best interest beyond the patient and her familial burdens to include a patient’s responsibility to society. Sparks reasons that a competent adult would recognize that they have a responsibility not to consume more resources than can be justly allocated to them, and therefore may make a decision to forgo care. This logic is often employed when patients decline treatment to preserve either their own, or their family’s financial health. Sparks suggests we apply this concept of responsibility to patients who have never displayed any desires, because of being non-conscious, severely mentally disabled, or in constant pain, it is reasonable to conclude that if they were competent they would choose to forgo treatment because of this responsibility, not because social factors are weighted more than their interest. Thus, this option maintains and protects a patient-centric focus, as it prevents societal need from overpowering the patients best interest. Sparks conceives societal need as a secondary factor for determining non-treatment in infants who already possess a poor physical prognosis, therefore merely add evidence to non-treatment, but never overruling a healthy child.
For Sparks, it is clear that rationing should occur at some macro level separated from specific care scenarios, what exact level this should be (e.g. Hospital wide, HMO, Insurance, State/Federal law etc.) is not explicitly stated. His criteria for the care of imperiled newborns overlaps to a great extent with Arras and McCormick’s individual quality of life approaches, with the added element of wider social responsibilities and the unique multi-levelled approach to delineating specific human goals that physiological life aids in achieving. Sparks would see that parents are in charge of decisions as long as they act with the patient’s best interest in mind, recalling that the physician has a duty to her patient, not the parents. Richard Sparks is an example of a weak quality of life model, accepting social factors in a limited way but ultimately giving precedence to the patient’s interest alone.
Charles Camosy is another adherent to a social quality of life model, but he critiques other models for not acknowledging or giving due weight to the anthropological fact that humans are connected at a fundamental level. Writing from within the Roman Catholic Tradition Camosy relies on Catholic social teaching’s universal destination of goods, and the interconnectedness of mankind, to bolster his use of the “triage” concept in his advocacy of rationing care at the individual patient level. It should be noted that Camosy agrees with McCormick, Sparks, and many others that all infants, and human beings, are moral persons worthy of respect, dignity, and love.
Out of all the positions to be presented in this essay it is Camosy and Sparks who share the most common ground. This is seen not only through comparing the two, but from Camosy’s own admission, saying, “[Spaks’ argument] is the closest to the central argument of this book” (said while explaining why Sparks was given more space in his book). Rather than rehash all the arguments Camosy shares with Sparks, I will instead highlight the differences in hopes of providing a succinct account of Camosy’s reasoning.
Camosy argues that Sparks’ distinction, between a primary level of patient interests holistically considered, and a secondary level that includes social factors, is a false dichotomy. Catholic moral anthropology recognizes human beings as intrinsically social. This sociality leads Camosy to state that there “are no interests of our own that should not always and directly be evaluated in light of the claims of others.” Choices of treatment aimed at the total best interest of a patient must recognize and work from these fundamental facts, and therefore account social needs in treatment decisions.
The inclusion of social needs is based on the principle of the common good and one of its logical results: the universal destination of goods. The Compendium of the Social Doctrine of the Church defines common good as the following:
The principle of the common good, to which every aspect of social life must be related if it is to attain its fullest meaning, stems from the dignity, unity and equality of all people. According to its primary and broadly accepted sense, the common good indicates “the sum total of social condition which allow people, either as groups or individuals, to reach their fulfillment more fully and more easily.”
Flowing naturally from this principle is the universal destination of goods which states, “Each person must have access to the level of well-being necessary for his full development.” Synthesizing these principles for the healthcare setting Camosy reiterates that every person is directed to refrain from consuming resources in a manner that is disproportionate from the goals of the common good. The same way it would be immoral for an individual to prodigiously waste food (e.g. tons of food per month!), it would be equally immoral to use vast healthcare resources with little to no benefit (futile treatment comes to mind). While outside the scope of his book, Camosy muses on the possibility of cosmetic surgery, certain end of life treatments, and other common uses of healthcare, as being a direct violation of the common good.
Individual quality of life proponents would reject Camosy’s expansion of benefits and burdens to allow for social factors, certainly Arras and McCormick do. Sparks would worry that allowing social factors to play a major role would fundamentally compromise the relationship between patient and physician, and could lead to diminishing the moral status of imperiled infants. It is also certain that the great Edmund Pellegrino would have lamented the twisting of the internal ends of medicine to fit a social agenda. However, social needs have been and are currently brought into the clinical setting. For instance, patients who would benefit from the prescription of anti-biotics are often denied in order to slow the onset of “super bugs” and the diminishing efficacy of anti-biotic treatments, a clear case of societies best interest overruling an individual’s.
Camosy makes his most radical departure from Sparks and other theories by advocating for the participation of physicians at the clinical level in determining, case-by-case, which treatments are proportional to the common good. Rationing at the macro level alone could lead to the potential denigration of imperiled infant personhood, because macro rationing sets a definite demarcation of who does or does not receive treatment that does not take into account the specific situations of each patient. For example, if it is decided at a macro level that no infant below 500 grams will be treated in order to conserve resources, what happens to the infant who is 495 grams? Or 480? 478? Allowing physicians who have the experience, technical knowledge, and ability, to evaluate patients on a case by case basis allows for more precise clinical decisions resulting in efficient use of resources, and preservation of imperiled infant’s moral status.
The weakest point of Camosy’s theory is the distance from the historical role physicians play in relation to their patient. If Camosy’s theory is implemented the physician is no longer concerned only with the best interest of the patient, but now societies as well. Camosy reconciles the seemingly disparate relationship between physician as patient advocate, and physician as gatekeeper of resources, through a creative expansion of triage. Triage is a method of ranking patients based on need, urgency, and seriousness of illness/harm, in order to allocate limited resources; most often employed in emergency rooms, disaster zones, and battlefields. During situations where triage is implemented the physician (or medical provider such as combat medic etc.) must categorize her patients in order of grave injury and possible outcome to ensure that a single patient doesn’t disproportionately use limited resources. While triage may have many different goals, the most common is to save as many lives as possible. The physicians involvement in rationing decisions at the case-by-case level is not questioned during triage, but recognized as needed to ensure equitable distribution of resources. Attempting to identify what classifies a triage situation Camosy has developed the following criteria:
 A patient population,
 A significant portion of that population in need of lifesaving therapies
 Limited medical resources such that, regardless of how we use them, some patients will die who otherwise could have been saved.
The fulfillment of the criteria above means triage reasoning should be applied in medical resource distribution. Does American healthcare meet this standard? The answer for Camosy is yes. Compared to other first world countries American healthcare is fragmented, consisting of public, private for profit, and private nonprofit medical providers who already cannot ensure that all medical needs are met. These institutions are currently engaged in healthcare rationing when they deny funds to treat certain pathologies, but they often do not take into account social goods. Camosy argues for a triage categorization applied in the broad setting of healthcare outside of emergency. In doing so he advocates for including physicians in rationing to ensure that discerning the most ambiguous case can remain in proportion to the common good and continue to uphold the dignity of imperiled infants.
In summary, Camosy’s vision of equitable resource distribution sees rationing decisions made at both a micro (physicians at the “bedside”) and macro (government and medical institution) level. The criteria of best interest are based upon a quality of life that accounts for quality in totality, including larger social factors. Doctors, as well as policy makers, would hold the reigns of treatment decisions that involve a judgment call related not to the patients interests individually considered, but within a larger matrix of responsibility.
The relational quality of life model will be the final theory based on quality of life presented in this essay. Drawing upon the work of Michael Panicola’s excellent summary of both scholar James Walter and the wider field, an overview will be given prior to examining Panicola’s own contributions.
Relational quality of life models differs from individual and social models in how they attribute value to physical life. Whereas an individual model such as McCormicks, views physical life as possessing an instrumental value, relational models view life as possessing ontic value. Life is the penultimate value that is only subordinate to the ultimate value: pursuit of life’s goals. Akin to Sparks, the relational model views life’s goals as comprised of diverse categories: material, moral, spiritual, and for the religious, communion with the divine. Physical life is therefore not an absolute value (as vitalists would hold) nor is its value simply useful or conditional. Life has real value in itself. When evaluating treatments in relation to best interest relational models use a criterion based upon the treatments ability to improve a patient’s medical condition to the point where pursuit of life’s goals can be accomplished without excessive burdens.
James Walters specific theory is based on life’s goals and limits read in a theological hermeneutic. In light of technology, Walters argues that the goals of neonatal medicine should shift from merely the alleviation of suffering, pain, and promotion of physical health, to a goal that recognizes that these elements are subordinate to the larger goal of serving life’s purposefulness. After all, the purpose of treating any patient, regardless of age, is to restore their physical health to allow for the pursuit of their life goals.
Walter’s theories are essentially an extension of the concept of ontic value. For example, Walters rejects quality of life models that explicitly link an infant’s value to the ability to function at a preconceived level, or to a standard of social utility. Physical life has value separate from its instrumental abilities to achieve other life goods, and therefore proponents of a relational model reject an individual model’s creation of a threshold mechanism (Arras, McCormick), and any semblance of social utility present within social models. Reducing “quality” to mean an attribute of life is to draw a sharp distinction between those lives with value and those without, a distinction that ultimately denies the moral status of infants.
Walter’s relational quality of life theory clearly places the decision of imperiled infant care in the hands of parents and emphasizes simultaneously the mediating role physicians, healthcare professionals, clergy, and other resources play during the process. In extreme cases where medical professionals determine that parents are making treatment decisions not in accordance with the child’s best interest, relief through court action should be sought.
All quality of life theories grapple with how to produce consistent criteria for determination of a patient’s best interest that takes into account their future quality of life. Regardless of which theory is selected a commonality shared amongst them is the inevitability of ambiguity. There will be cases with no facile determining markers for selection of treatment vs. non-treatment. In order to account for such ambiguities, in his doctoral dissertation, Michael Panicola wed relational quality of life with principles of Christian Discernment. I want to briefly present Panicola’s treatment of discernment at the cross roads of neonatal care.
Panicola begins by making an observation, “Moral living requires discernment. Human persons cannot escape this simple reality.” Regardless of theory utilized, standard put forth, or knowledge available, a decision must be made to accept one course of action and reject all others. Inherent in this decision-making process is some form of discernment. In general, discernment is a process in which “qualitative and value-laden assessments” are used to arrive at a decision. Christian discernment is different because its principle goal is to respond to God’s call to love, and to differentiate between potential options selecting the most loving. Discernment involves listening to one’s inner stirrings, reaching out to objective information, and consulting with wise and trusted individuals. This process is a spiritual and moral movement that is about both what God is calling one to do, and what God is calling one to become. Recognizing that moral decisions and actions shape who someone is, the Christian goes beyond merely asking what the moral decisions is, asking if the decisions brings them closer to God and others. This line of questioning deals with the appropriateness of the actions, and whether they are consistent with a relationship with God.
Any person who is familiar with making difficult decisions knows all too well that the above discernment process is not merely an intellectual exercise, but a process that evolves from the heart (meaning here the deepest level of a person) and initial moral intuitions. Moral intuitions are the first impression of a situation, involving emotion, conscience, and other internal influences. As such the many differing subjective inner movements must be sifted, often purging many good movements, in order to find the movement in most in line with God’s will. Yet discernment is always bounded by objective limitations, lest moral agents become “navigators without a compass.” These boundaries are comprised of general moral principles and historical context. For example, when discerning how to end world hunger, it is impermissible to choose to eliminate, through genocide, starving peoples as this violates the general moral principle of not murdering the innocent. It is likewise imprudent to decide to feed everyone by purchasing and sending food from one’s local grocery store, as it is objectively impossible to accomplish ones goal this way due to limitations of space and time. It is important to always recall that discernment involves a relationship with God. Attuning oneself through prayer and worship is an essential habit to cultivate in discernment.
Before I enter into the subjective portion of my essay I want to look at one final ethical theory, and how it relates to neonatal care. A personalist approach to ethics based on Louis Janssens and Chris Gastmans writings will be presented as an explicitly Roman Catholic position. Pesonalism is based upon a series of foundational principles that shape its criteria used in ethical reflection. Janssens postulates eight principles which I will summarize in the following paragraphs, as well as illustrate how they are utilized in ethical reflection through the article Gastmans co-wrote with others.
The first and fundamental principle is that the human person is never an object, but always a subject. Meaning that a person should never be reduced to, or used as, an object or means to some end, a person is an end in themselves. Second, persons are a subject within corporeality, spirit and body exist as one making bodily tendencies more than mere biological needs. A logical extension of this embodiment is that persons exist as part of the material world as a physical reality, and therefore must endeavor to “make the world continuously more livable for human persons.” While explicating this last point, Janssens points to the importance of recognizing that human creations have ambiguity; human activity and action always contains a positive and negative reality. Not unique to personalism but fully embraced by it, is the reality that human persons are at an essential level directed towards one another in relationship. Human kind’s relationship with one another is paramount to her moral development, indeed “man becomes only by contact with those who have already become.” This sociality is not only expressed through an openness to one another, but also by the need to live within social groups, and therefore structures and institutions that promote these groups. A person is imago dei (i.e. made in the image of God) and is called to worship, glorify, and know God in and through every activity in which she engages. This close relationship with the transcendent should not deemphasize that human persons are historical; existing within the confines and limitations of time and space. Janssens borrows from psychology the notion that man lives and develops within stages of life that contain possibilities, and he uses this to argue that it is ethics specific task to “inquire as to how the growing possibilities can be realized to serve the dignity of man and how the developing experience of values enrich our activity.” The last principle states that while all persons are equal at a fundamental level, they are also an originality. Each human person is unique and unrepeatable, a reality that should not be forgotten in humanities equality.
The core principles behind personalism have been produced in the previous paragraph, granted in his article Janssens goes on to apply these to the ethical quandaries of artificial insemination, nevertheless he provides the reader with a greater sense of what is the driving factors in personalist ethics. Keeping these principles in mind a turn to an article that was co-written by Christ Gastmans and others from the Catholic University Leuven will directly demonstrate how these principles are applied to the case of imperiled newborns.
The goal of personalist health care ethics is to identify those value that should be pursued to best defend and promote human dignity. An act is good and should be performed if it serves human dignity, meaning if an act truly benefits a person considered in the entirety of the many dimensions comprising who she is. It is important to understand that the concept of human dignity is not another term for quality of life. Human dignity exists inherently in human persons and cannot be lost due to physical factors such as illness.
Gastmans et al. state three guiding principles as they enter into ethical analysis. Drawing from previously mentioned James Walter they state the purpose and central end of healthcare is to aid the purposefulness of physical and personal life. A medical benefit is defined as those treatments that can bridge the gap between a patient’s physical state and their potential pursuit of life goals. Gastmans et al. recognize that a newborn infant, being unable to give informed consent or make her desires known (if she even has desires), is obviously medically incompetent. Therefore, respect for autonomy takes on a relational character’ as the infant’s autonomy is directly related to her parent’s autonomy. Whereas most debates on end-of-life decisions focus on a concept of individual autonomy where the surrogate has complete discretion, the personalist approach employs a relational autonomy where surrogates have a dialogical relationship with medical providers, both working towards a shared decision. It is important to understand that relational autonomy does not mean surrogates lose control of the situation, but that autonomy is performed but within a social context wherein all involved must justify their decisions to all members. Lastly, justice requires that neonatal care be equally accessible to all, and in order to keep this a possibility the “care for an individual patient is always limited by the possibilities of equal care for all.”
Using these guiding principles Gastmans et al. draw several conclusions. Critiquing quality of life they recall that parents and physicians cannot engage in so called “objective” reasoning about the child’s quality of life, since such reasoning’s are prone to error and bias. Rather it is the duty of parents and physicians to make treatment decisions that promote the child’s well-being. No matter how hopeful, cases exist where medical intervention does not serve the child’s best interest. In such cases there must be support for a “dignified process of dying”, such as palliative care. It is to be noted that while Gastmans et al. reject the active killing of an infant as a normal option, they do not universally reject it because exceptional cases could arise that challenge the norm.
Personalist thought answers the questions posed in this essay in a very similar manner as quality of life theories, but differs in key areas. The sources used do not specifically outline at what level rationing should occur, but mention that there is a responsibility by society, medical professionals, and parents, to see care decisions within the “wider perspective” of societies many responsibilities. It is clear that personalism eschews quality of life as too imprecise, preferring to use promotion of human dignity as the main qualifier of treatment decisions. Relational autonomy augments parental decision making to include a larger community who helps and must to a certain extent agree with the conclusions drawn, a stark difference from other theories.
The theories presented in this paper attempt to articulate a method and critera to discern and act upon those treatment options in the imperiled infants best interest. In doing so they must first define what best interest, benefit, and burden, mean in the medical context as well as touch upon the larger goals of medicine. It is easy to say that physicians should act in the best interest of imperiled newborns, but what does that mean?
Developing criteria for best interest is difficult without defining the goal of medical treatment, as different goals beget different criterias. If the goal is only to better the physiological processes of the patient, then the criteria is which treatment corrects the pathology regardless of outcome. If the goal is to maximize efficiency of resource expenditures, the criteria will be based on perceived returns per dollar spent. I contend that the goal of medicine is to improve a patient’s physical health to the point where pursuit of life’s higher goals are possible. With this definition, it would seem the criteria would be that of sparks, or Jannssens, viewing options in light of higher abilities. The problem remains, however, that these criteria are vague. Whereas models that define threshold criteria are able to make definite evaluations that are more concrete and readable accessible.
A threshold criteria may be a solution of vagueness, but I agree with Camosy that they pose a risk of stripping moral status from infants. Currently the medical field does not possess enough knowledge to determine which side of the threshold every case will fall. This means that in extreme or complicated cases there is an inability to make a distinction at a granular level. Due to this lack of knowledge, thresholds should serve as a guide, and not a binding rule. Instead, each option should be evaluated in terms of the goal of medicine. Asking, “if this treatment is applied will it allow the new-born to pursue goals relatively burden free?” Only the treatment that best fulfills this goal should be selected, remembering that forgoing treatment is an acceptable possibility.
This standard carries an inherent vagueness that requires attention. Vagueness is not bad. In this case it is the future that is vague, and this lack of knowledge is a universal characteristic of humankind’s finitude. The solution to this problem is tied in with the question of who ultimately decides the fate of an imperiled newborns treatment. I want to compare a model of third party surrogacy, and parental surrogacy.
I want to define third party surrogacy as any situation in which the parents of a newborn are no longer s responsible for care decisions. This may come about in a number of ways, for example, if the infant has no parents obviously another surrogate will be found. Having to use a third-party surrogate is not wrong, unless it is the norm not exception. Two scenarios might predicate third party surrogacy becoming the normal procedure, enactment of strong social quality of life, or enactment of a threshold quality of life.
Strong social quality of life stances, such as Camosy’s, places decisional capacity in the hands of parents within a tightly defined range. Parents have full autonomy until they run into a medical professional or team who determines that their child will not receive care based on resource levels. This may result in more efficient use of resources, but entirely cuts out parents from the decision making possess. While this may not pose a problem for cases where treatment is obviously inappropriate, it becomes increasingly problematic when infants are in the vague area previously mentioned. Threshold models can play a similar role if they become the sole standard for life saving treatment removing the parents from the decision process. In such cases the child’s fate is at best beholden to the whim of a quasi-mathematical evaluation, at worst subject to biased evaluation of their prospective life quality. These methods of surrogacy also breed contempt between physician and parents, eroding trust and driving a wedge between the two groups responsible for the infant.
Many would agree that to remove parents entirely from the decision-making process would be a mistake and an affront to their autonomy. At the same time, many are fearful of the opposite, giving parents total unfettered control. They might point to cases where parents have advocated for treatment options that are futile, or harmful, as cautionary tales. Where is the middle ground? Certainly, the courts could mediate those cases where physicians and patients disagree, but often the courts are inefficient and such recourse destroys patient physician relationships entirely.
The middle ground is found in shifting the commonly accepted model of individual autonomy towards a relational model. Individual models of autonomy envision human beings in an atomistic relationship with one another, they are completely separate and free to do what they want unfettered by the needs of others. A parent exercising this type of autonomy does not need to justify their actions beyond the fact that it is their free choice. Clearly if this is the conception of autonomy in the context of medical decisions there is a serious problem. Instead I suggest, along with Gastmans et al., that a relational model of autonomy should be used.
A relational model of autonomy recognizes that individuals, being born in relationship, are inherently social. Due to this sociality autonomy is not acted upon in a vacuum, but within a community of persons; truly autonomous acts can be justified to all other persons involved in the decision. In the context of imperiled infants there is a community formed between patient, parents, and medical team. This community is not adversarial, where individual autonomies clash, but is dialogic. Parents and the medical team must work together to come to a shared decision that can be justified to each member. While parents are chiefly in control of the care decisions of their child, they turn to the medical staff for aid and advice. Michael Panicola’s thesis on discernment is applied to this relationship, where parents seek expert advice from experienced medical staff, moral guidance from clergy, and reflect upon the various treatment options. It is the hope that if parents and medical staff see themselves as on the same team with one unified goal, the child’s best interest, they may avoid recourse to the courts.
When speaking about the special relationship between parents and physicians it is impossible not to touch upon healthcare rationing. There are two levels which are referred to in rationing of medical resources, the macro, and the micro. Sparks has argued that rationing must only occur on a macro level, leaving physicians and individual cases outside of the consideration. These macro decisions essentially limit treatment options available to parents and physicians. Camosy has argued for both macro and micro rationing. In his view, micro rationing involves physicians dictating treatment for specific imperiled infants to help conserve resources.
Physicians should never be involved in rationing at the “bedside” of their patients for a variety of reasons. It violates the trust between patient and physician, and by extension parents, by automatically establishing a possible adversarial relationship. A conflict of interest of this scale is simply not a viable solution. Yet, micro rationing should not be abandoned entirely, for as Camosy argues, it allows for a more precise distinction between cases that are ambiguous or on the border between receiving or forgoing care. I argue instead that if micro rationing is going to be sought, it must occur at a hospital by a committee. The medical field has already identified the benefits of ethics consults, and the separation of physicians from being the sole determiner of what is ethical, and they could equally benefit from allowing rationing decisions to be separated as well.
The difficulty in appropriating Panicola’s discernment model is the inevitable trouble of bringing a tradition that is explicitly related to transcendence and religiosity, into the public space of medical care. There is more work that is needed to fully understand how this can occur, but at this point it is enough to at least integrate general principles of discernment. If those persons who are part of the “community” discerning treatment options do not pray or worship, it might prove valuable to use language of reflection, and meditation. An experience that is more than thinking, less than transcendent experience.
In conclusion, societal healthcare rationing at the “bedside” of imperiled infants should be rejected, while social factors are important and can play a secondary role in treatment decisions they should not be the sole driver. Instead rationing should occur primarily at the macro level, and if it is implemented at a micro level, should be found in committees or policies that are separate from physicians in charge of patients. The criteria for determining care that is in the patient’s best interest ought to be based on finding the option that most bridges the gap between a patient’s physical life, and the ability to pursue life’s goals. Parents are the primary decisions makers who take this criteria into consideration, but not in an unfettered and free manner, but bounded both by societal limitations, and the community of medical professionals who aid in their discernment process. I argue that it is entirely possible to both work for the best interest of imperiled infants, and allocate resources justly, while not corrupting the community that works with one goal: the patients interest.
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