On the NICU roller coaster, there can be many medical decisions to make. When a baby’s prognosis and treatment choices are clear, the doctors become the “decision leaders,” offering explanations, making recommendations, and asking for the parent’s informed consent. But sometimes clarity is lacking. If there is more than one treatment option and no obvious choice, or if a treatment is experimental or of questionable effectiveness for your baby, the doctors should bring you into the decision-making process.
Of course, you needn’t go it alone. Decision-making can be a collaborative endeavor. Your baby’s doctors, nurses, and specialists can provide information and statistics, plus their expertise, opinions, and recommendations. You might seek input from other trusted advisors, such as family, friends, or counselors. You also bring your own observations of your baby, as well as your values, preferences, point of view, priorities, and hunches to the process. You also bring your heartfelt hopes and fears for your baby’s future, and your parental devotion to do what is in your baby’s best interests.
Making decisions can be challenging. You must acquire knowledge about physiology, development, and medical treatments. You must figure out how to weigh the risks and benefits. Sometimes, you may tell your baby’s doctors that you will simply follow what they think is best.
Most challenging is when decisions become a matter of life and death. Again, when a baby’s prognosis is clear, physicians become the “decision leaders,” recommending the course of treatment that holds the clear benefit. So for instance, when a baby’s prognosis is certain recovery, intensive care is the obvious choice to restore health. And when the prognosis is sadly certain death, hospice care is the obvious choice to ensure that the baby’s life, though brief, is free of pain and spent cradled in loving arms.
But when a baby’s prognosis is uncertain, or in the “gray zone,” it’s unclear whether medical technology will help or harm. This is often the case with babies who are born just at viability or within a few weeks afterward, babies born with serious medical conditions, or babies who develop life-threatening complications. In these situations, parents become the decision leaders, and with input and support from the health care team and other advisors, make the heart-wrenching choice between intensive care and hospice care.
If your baby is struggling to live and the prognosis is uncertain, the health care team should involve you in treatment decisions because it is you who is ultimately responsible for the care and well-being of your child. It is you who must clarify what is in your baby’s best interests; it is you who must live with the consequences of treatment decisions.
But the cruel irony of the “gray zone” is that you must make these crucial decisions with limited information and no clear view into the future. It’s impossible for anyone to know exactly what will happen with your child if you choose aggressive intervention. The right course of treatment may remain elusive, or lead to further complications. Even if the doctors say that your child will be significantly impaired, often they can’t tell you exactly how, or to what extent. Some children outgrow or overcome seemingly insurmountable problems, but many others don’t. Some serious problems, such as cerebral palsy or severe developmental delays, often cannot be firmly diagnosed until the first or second year of life. Adding to the abounding uncertainties, life-and-death decisions often involve
· Complicated, rare, or obscure diagnoses, such as certain birth defects, brain abnormalities, or severe feeding disorders, about which little is known
· Conflicting opinions about a treatment’s benefits, risks, and outcomes for your baby
· Experimental treatments that may or may not help, and may well lead to complications
· Research statistics, which tell you nothing about your child; you can only guess whether your child will be one who does poorly or one who does well
· Lack of consensus about what constitutes futile intervention
When medical knowledge is incomplete, decision-making becomes fraught with unknowns and mere speculation. That’s why decisions in the gray zone are largely subjective and that’s why they rightly rest with you, the parents. What matters most is your guesses. You can draw on your intuition, your observations of your baby, your judgment, your values regarding quality of life and death, your bias toward medical technology or nature taking its course, your spiritual beliefs, and your gut instincts. Ultimately, you have to sense what is in your baby’s best interests and go with your heart.
Although uncertainties can add immeasurably to your distress, being involved in the decision-making process gives you some measure of control over what happens to you and your baby. After all, if no one can know for sure the right way to go, you might as well be the one to choose—because you and your child are the ones who will travel that path, together.
Making life-and-death decisions for your baby is an immense parental responsibility. It involves assessing the severity of your baby’s problems, poring over the options, and perhaps changing your mind a dozen times. And when you’ve made the decision, you must face the outcome, whatever it might be.
If you have to decide how aggressively to treat the most devastating complications of your infant’s condition, you may feel the most protective of your baby and the most connected to him or her. What a crushing time to feel the full weight of parenthood.
If you decide to try aggressive medical intervention, you are betting that the benefits will outweigh the risks or harm. If you decide to decline medical intervention, your instincts as a parent are leading you to protect your baby from invasive and painful procedures. Whatever you decide, you believe it is the most compassionate choice for your baby. You make your decision with the best of intentions and with the deepest love.