How should the expectant couple react when they learn that their pregnancy will quickly end with the birth of an extremely premature infant? These fragile infants—at the margins of viability—demand the extremes of life-sustaining care and typically remain in the Intensive Care Nursery (ICN) for months. After such a prolonged length of time, all involved—infant, family, and doctor—experience the gamut of emotions. In a world filled with technological prowess and promise, what are parents to expect during the process? Should they be mad at God, or at themselves, or the medical system? How should the parents’ spiritual faith interface with any current hope and future uncertainty?
Neonatology (the medical care of the premature infant) involves life-and-death decision making that depends on accurate medical details. This area of medicine has demonstrated substantial improvements in the care provided to the extremely premature infant because of both improved diagnostic and treatment capabilities. However, although the currently available prenatal diagnostic equipment is excellent in many settings, major errors may arise in the effort to accurately assess the gestational age of the infant. This information is extremely important; for example, the prognostic implications of an infant who is 24 weeks of gestational age differ substantially from that of the 25-week premature infant. The initial complete examination of the infant at birth is the best way to assess the gestational age, and at this point in the infant’s life, much of the available medical information is useful in the decision-making process. Furthermore, as medical predictions are made and possible medical trajectories are assessed, the medical plan is proposed by the physicians and is accepted by the parents. Much of this parental-physician discussion is based on the physician’s level of expertise and the appropriate access to advanced medical-surgical equipment. To the extent that the medical team cannot accurately predict either the evolution or the resolution of the medical situation, the parents and the physician must engage in decision-making that is based on incomplete medical details.
Edmund Pellegrino offers the medically useful triad—benefits, burdens, and efficacy—for considering the assessment of medical futility.[1] In this thoughtful analysis, he explores the benefits and burdens of medical care as they impact the patient (in our case, the premature infant) coupled with the efficacy of the medical care in terms of how effective a particular treatment is in producing the desired effect or result for the patient. It is not unusual, however, for other physicians who treat the marginally viable infant, to employ these notions in a more utilitarian fashion—looking at the (1) low probability of survival, (2) high probability of severe disability, and (3) extraordinarily high cost of present and future medical care.[2] It is imperative to realize that the discussion of medical futility should only be framed using the medical facts and details of the case; medical futility should never be reduced to the value or quality perceived in the life of an extremely premature infant.
From an entirely different perspective, however, burdens and benefits may evolve into parental attitudes that embrace the infant and her care. From a biblical perspective, benefits clearly arise from burdens (Galatians 6:9), and Scripture is very clear in its admonition to care for the needy (James 1:27). Not only is there benefit to the care-provider (Romans 5:3), but there is potential benefit to another individual undergoing similar travail (2 Corinthians 1:4). Whereas this type of burden-benefit ratio may be antithetical to a secular mindset, believers understand that not only is it—at times—incomprehensible, but it frequently is a blessing.
The best-interest standard is a medical-ethical model that is used for patients who are unable to speak for themselves. This model is applicable in appropriate medical situations in which the patient either never had or has lost decision-making capacity. In its purest form, this standard concerns nothing but the best interest of the patient while considering the diagnostic and treatment options for the patient.[3] Practically speaking, this standard may be extremely difficult to implement because, to the degree that the premature infant will require significant future care, his or her best interest is largely inseparable from that of his or her family. Any child with a chronic illness places great demands upon the family, and medical decision-making directly impacts family resources—time, money, and presence (being at the patient’s bedside and establishing a bond). The scriptural overlay of this process is the family unit experiencing the love (agape) of God—even during this time of intense crisis—and thereby being able to offer and demonstrate love (philanthropia) to its own members and to its community of support. The family unit may do this through expressions of compassion, gratitude, and concern. The local church (ekklesia) is at its finest when pouring out support during a family’s time of crisis and in covering the needy family with prayer.
Parents, and other individuals who speak in favor of aggressive medical treatment of the extremely premature infant frequently point to notions such as 1) the sanctity of human life made in the image of God, 2) the inherent value of any human life (even if medically compromised), 3) the right, once born, to live a life, 4) future advance in medical science that may improve the infant’s impairments, and 5) future blessings that continuation of the infant’s life may confer. Those voicing support may feel that the infant’s life—no matter how short, burdensome, or painful—is a life worthy to be lived. Although physicians may have difficulty understanding these parental feelings, they must respect this as a parental privilege. Parental authority is a very strong—and appropriate—connection, and few should question this right. It is a foundational tenet of our society that parents act in the best interest of their child as they make decisions for the child while offering instruction and education. Even the American Academy of Pediatrics speaks strongly to this issue.[4]
Medical decision-making for the extremely premature infant will always be difficult. The medical team necessarily must demand accurate medical facts, offer good communication to the parents, and demonstrate strong bias in the support and preservation of the survivable life of the infant. The parents must depend upon the medical team for information, and upon family and friends for support. Whereas the medical best interest of the extremely premature infant is clearly the highest ethical standard, there are times where the best interest of the infant is not so clear. It may be appropriate that, in these difficult situations, the preferences and best interests of the parents be given more direct consideration in the decision making process. Both parents and physicians must recognize that there are certain conditions where the physician’s medical-ethical responsibility to the patient is to intervene where the parental request may be medically inappropriate in terms of excessive or inadequate medical treatment. Under these medical-ethical circumstances, perhaps a parent can only affirm the injunction “… to do justice, love kindness, and walk humbly with your God” (Micah 3:8).
[1] Pellegrino ED. “Decisions to Withdraw Life-Sustaining Treatment: A Moral Algorithm.” Journal of the American Medical Association 2000; 283(8):1065–1067.
[2] Gunderman RB, Engle WA. “Ethics and the Limits of Neonatal Viability.” Radiology 2005; 236 (2): 427–429.
[3] Mercurio MR. “Physician’s Refusal to Resuscitate at Borderline Gestational Age.” Journal of Perinatology 2005; 25 (11):685–689.
[4] American Academy of Pediatrics Committee on Bioethics. “Guidelines on Foregoing Life-Sustaining Medical Treatment.” Pediatrics 1994; 93 (3): 532–536.
This essay is revised and expanded from an Op-Ed entitled, “Medical Decision Making for the Marginally Viable Infant” originally published in Virtual Mentor 2008; 10:673–676.
