MINISTRY & MEDICAL ETHICS
Neonatal Ethics: Deciding Whether or Not to Intervene
Understanding the reasoning behind decisions for or against medical intervention will better prepare pastors to provide care to families facing borderline viability decisions.
By Christina M.H. Powell
The birth of a newborn baby should be a time of joy as parents celebrate the beginning of their child's life. When birth comes too soon, however, parents find themselves putting their hopes and expectations aside to make difficult decisions. On the last day of March, Amanda was preparing the nursery for her daughter, who was due at the end of July, when she went into premature labor. Although the doctors did everything they could to slow down the labor process, she gave birth to her daughter at 23 weeks.
According to the Centers for Disease Control and Prevention, nearly a half a million babies are born prematurely in the United States each year, or about 1 out of every 9 births. The number of babies born between 22 and 25 weeks who survive is increasing as a result of medical advances, as well as the number of children born prematurely who reach 3 years of age without experiencing a major disability. However, most babies born extremely early die or experience cerebral palsy, intellectual disabilities, respiratory problems, visual problems, hearing loss, and digestive problems.
Ministering to couples facing the loss or serious disability of their child can be one of a pastor's most heartrending challenges. Understanding the reasoning behind decisions for or against medical intervention will better prepare you to provide care to families facing decisions at the borderline of viability.
Basis for the Decision
When the first neonatal intensive care units (NICUs) opened in the 1960s, a premature infant had a 95 percent chance of dying; now the infant has a 95 percent chance of surviving. While dramatic improvement in survival rate is certainly good news, technological advances require decisions about which young patients will benefit from the intervention and which should receive only comfort care.
Lungs are one of the last organs to mature in the womb, thus many premature babies must spend their first days and weeks of life on a ventilator. Their lungs have not yet developed adequate surfactant to stay expanded between breaths. If a woman is in premature labor or at risk of giving birth too early, doctors may give the mother a short course of steroids to help the lungs develop earlier, although the drugs need to be given at least 24 hours before birth to be most effective.
Where credible medical evidence exists that the benefits of a treatment outweigh the burdens, doctors are obligated to pursue treatment. Thus, doctors resuscitate most babies born after 26 weeks because medical evidence suggests they will survive treatment. The American Academy of Pediatrics recommends not resuscitating babies born before 23 weeks because the overwhelming majority will not survive even when treated.
Between 23 and 26 weeks, treatment is optional because doctors have difficulty predicting which babies will survive treatment and which will not. For babies born within this gestational window, doctors and parents must make difficult decisions. In the same way we make a medical decision for adult patients approaching the end of life, the important question is whether a treatment is postponing death or enabling life. When we can only briefly postpone the child's death at the cost of great suffering, the treatment may not be beneficial to the child.
Ethics Behind the Decision
When care is optional or investigational, the parents have a right to be involved in decision making. Doctors, on the other hand, do not have a responsibility to provide futile or unreasonable care. Gestational age alone, however, may not be a sufficient criterion for determining whether or not a baby could benefit from neonatal intensive care. In the same way the calculation of a baby's due date relies on certain assumptions, gestational age may be inaccurate depending on normal variations from the woman's average ovulation date. A baby a week older than suspected has a much greater chance of survival. Thus, doctors need to assess whether the gestational age is in error.
Furthermore, doctors should individualize treatment decisions. The baby's weight at birth is often a better indicator of survival than the gestational age. Girls usually survive prematurity better than boys. Singletons have a better outcome than multiples. Babies who receive steroids to mature their lungs do better than those who do not receive the treatment. A decision based on gestational age alone makes no allowance for the needs and best interests of a particular baby, potentially leading to the preventable death of a baby that would survive given the appropriate treatment.
Some discussions about deciding whether or not to try to save extremely early premature babies center on the burden a handicapped child might become to a family. An important ethical question is if the effects of a disabled baby on the parents and family should be a factor in the decision. In asking that question, we must be careful not to devalue disabled individuals.
Romans 13:10 states, “Love does no harm to its neighbor. Therefore love is the fulfillment of the law.” Christians are not compelled to delay the dying process, especially when such a decision would place an unnecessary burden of suffering on a patient. While the decision to let a loved one go is heartbreaking — especially when the loved one is a precious child at the beginning of life — a Christian is not left without hope. A Christian has a faith and knowledge resting “in the hope of eternal life, which God, who does not lie, promised before the beginning of time” (Titus 1:2).
Ministry After the Decision
Good pastoral care and support from the church can make a difference in a family's life in the aftermath of a decision whether or not to begin neonatal intensive care. Parents who have had to say goodbye to their child much too soon need support for the grieving process. They may desire to take a break from baby showers and Mother's Day and Father's Day church attendance during their healing process. They will appreciate your prayers, willingness to listen, and the gift of your presence.
Parents who have a baby in neonatal intensive care will appreciate practical help for the family. If the baby has siblings, they will benefit from care and attention from church friends. Delivery of meals can make life less stressful as the mother cares for a baby at the hospital as well as family at home.
Finally, one of the best ways you can uphold the sanctity of life is to integrate disabled children into your church programs. When you value these children enough to help them participate in Sunday School or children's church, you send a strong message in support of human dignity. You and your church can make a huge difference in the life of someone like Amanda by walking with her in the difficult days after a premature birth. Your actions and concerns will reassure her that God loves her and has a plan for her life even in the midst of her present sorrow.