Kansas City,
09:51 AM

Life in the NICU: When parents are faced with tough decisions

Dr. John Lantos, Director, Bioethics Center

Having a child in the Neonatal Intensive Care Unit (NICU) and facing decisions about life-sustaining treatment can be scary, heartbreaking and overwhelming. Disagreements are not uncommon. Sometimes, doctors recommend treatments and parents refuse. Sometimes, parents request continued treatment doctors think inappropriate. Usually, the dilemma comes down to questions about the value of life with severe physical or cognitive impairments.

The Gray Zone

Treatment for some diseases are clearly beneficial. For instance, more than 90 percent of children born after 30 weeks of gestation will survive and have no long-term problems.

On the flipside, a baby born at 20 weeks will certainly die. No child born that early has ever survived. Treatment of such a baby is futile.

The tough cases are the ones in-between, for whom it’s not clear if treatment is in the best interest of the child or not. Some people call this the gray zone. Doctors could do everything to save the baby’s life and either the baby is going to die anyway, and have a more painful, drawn-out death, or the child could survive with severe disabilities and chronic health problems.

The gray zone is a unique challenge, and it’s important that doctors help parents understand there is a choice, the implications of that choice, and what should be considered to make the best choice for the baby and family.

The New Decision-Making Approach

For many years, the standard practice for physicians was to only provide the facts. By this approach, doctors were encouraged to think of themselves as neutral and objective. The goal was to tell families what the outcome would be with treatment and then ask the parent to make the decision about whether to try to save the baby or whether, instead, to provide only comfort care.

Once the facts were shared, by this view, it would be the parents’ decision on what to do next. Physicians considered this a model of informed consent. Well, it turns out, most parents hate this approach.

First of all, parents of a dying premature baby are not at the peak of rationality and are instead at an emotional vortex where nothing makes sense. Everything the parent had hoped and dreamed has just been shattered. They don't know where they are, what they're doing, how to do it and who to trust. They're not only getting pressure from each other and the doctors, but family members who also are emotionally devastated.

Second, decisions must be made immediately. A premature newborn needs treatment urgently. Third, doctors themselves have biases and are often not the best communicators. Put these all together and it led to dissatisfaction on both sides. Parents felt abandoned and doctors felt parents made impossible demands.

A new approach is developing, by which, doctors help parents discern their own values and ethical commitments as they face an unanticipated situation and life-altering decisions. Instead of giving parents the facts, doctors need to start by acknowledging emotions and help parents understand there is a choice.

Doctors and Parents Working Together

Medical advancements have redefined the way doctors and patients address end-of-life decisions. Things that used to be uniformly fatal are no longer fatal. There is always something more that can be done or tried.

If a ventilator isn’t working, the child can be put on a lung bypass machine. The machine does all the work and the lungs are no longer needed. Dialysis can take over for the kidneys and a left ventricle device can take over the functions of the heart, and there’s always an experimental therapeutic agent that hasn't been tried before. None of this was possible 50 years ago. Knowing how far to push the limits is always tough on families.

Doctors need to think of their own biases and acknowledge personal opinions, but it shouldn’t dominate the discussion. It’s not uncommon for parents to ask the doctor what they would do if faced in a similar situation. While it’s ok to share one’s own belief, it doesn’t mean it’s the right choice for the family. It’s also ok for doctors to admit they don’t know what they would do.

The second step is to acknowledge parents are in a crisis. For many, it’s the worst thing that has ever happened. Doctors need to ask parents to share fears and hopes, and get to know these families better. After that, providers can tiptoe into the idea that a decision needs to be made together.

Good Ethics Start with Good Facts

Good facts are needed to make choices. After that, it comes down to values. The key question is what’s most important to the parent, particularly for their child.

The primary role for almost every parent is to love their child, keep them from harm and to do what’s best for the child’s health. When keeping a child alive becomes less and less likely, the role of the parent changes. Parents get to the point where they say what it means now to be a good parent is to stop the painful, medical interventions that are only causing suffering.

What Parents Need to Know When Facing End-of-Life Situations

Decisions don’t usually need to be made right away. In fact, often, it’s better to start treatment and then see how the baby responds. Like most situations, the assessment made in the first five minutes isn’t as good as the assessment made after 24 hours. Some babies born at 23 weeks will look better after the first day or two of life, in other cases the child’s condition may get worse. If things aren’t going well, then doctors and families together can re-assess the situation and, perhaps, decide to withdraw life-support.

Parents need to take time and talk about their feelings with each other, and the nurses and doctors. Don’t make a decision until if feels right. Parents need to find someone they trust and let that person be their guide.

If treatment doesn’t work, redirect care away from efforts to save the child’s life toward pain relief and comfort. Ask if the hospital has palliative care services. Good palliative care almost guarantees the child will not be in pain or suffer. The family can then gather, practice faith and create a peaceful atmosphere. Sometimes that’s the most loving thing a parent can do for a dying child.


Read Dr. John Lantos’ article Ethical Problems in Decision Making in the Neonatal ICU, which is published in The New England Journal of Medicine.

Learn more about the Bioethics Center at Children’s Mercy, which is only one of four hospital-based bioethics centers in the U.S.