In neonatal medicine, there is a grey area where professionals may be uncertain whether it is in the child’s best interests to start life-saving treatment. Without it, the infant dies. But the treatment can also do great harm. One of the foremost duties of medicine is often said to be to “do no harm”. But how much of a burden on the infant is acceptable? At what point is the hope simply too small to justify action?
We who work with premature and sick newborns are happy to have the opportunity to provide life-saving treatment to babies who are born prematurely. Our work enables us to help these children grow up, and allow for a good life for the children and their families.
Advances in neonatal medicine have allowed us to help more and more very premature babies. The limit for how early in pregnancy babies can be saved (the so-called “limit of viability”) has crept lower. Today, in high-tech countries, this limit is between 22 and 25 weeks of pregnancy.
Is it sometimes appropriate not to save a life?
At the same time, we know that an infant’s risk of complications increases the earlier it is born. Some of the youngest babies will die from complications after weeks or months of intensive care, and some will survive with major problems that will affect them for the rest of their lives.
If life-saving treatment is highly likely to end in death or serious disability, the question is whether medicine has violated its primary ethical duty —to do no harm.
In the first weeks after birth, we unfortunately cannot know which infants will survive to live a good life. This raises questions about the justification for saving a life when a baby is born at the limit of viability.
Is it always right to save a life — or is it also sometimes right not to? How much of a burden on the infant is acceptable? At what point is the hope simply too small to justify action?
These difficult questions have led to the existence of a so-called “grey zone” in neonatal medicine. The grey zone is an area where professionals are unsure whether it is in the child’s best interests to start life-saving treatment or not. If life-saving treatment isn’t initiated, the infant will die.
At the same time, life-saving treatment can do great harm. One of the foremost duties of medicine is often said to be to “do no harm”. If life-saving treatment is highly likely to end in death or serious injury, the question is whether medicine has violated its primary ethical duty – to do no harm.
The difficult grey zone
The definition for which infants should be included in the grey zone varies from country to country. In Norway, it primarily includes infants born in gestational week 23. In Sweden, it has crept down to gestational week 22. In the Netherlands, it only begins in gestational week 24. This means that infants born in gestational week 23 in the Netherlands are not offered life-saving treatment. This is justified under the principle of doing no harm.
Newer guidelines try to use other factors in addition to gestational week, without this actually solving the grey area problem.
Neonatologists have extensive experience in treating infants born at the limit of viability. They have an overview of different treatment options, and are used to making decisions.
Parents should be given a voice in the decision-making process, so that the choice of treatment can be made with them.
But grey area decisions are beyond what neonatologists are experts at. They are precisely about decisions for which medicine cannot provide a good answer, and which include crucial ethical assessments for those involved. And those who are most involved are the parents.
Shared decision-making with parents
Parents are the closest to the child in question, and it is they, who, together with the child, will live with the consequences of the decision to be made. Should we exclude parents from this decision? This seems wrong and unwise.
Parents should be given a voice in the decision-making process, so that the choice of treatment can be made with them. Making choices together, called “shared decision making”, has become an important ideal in our time in different areas of medicine.
Parents have very different prerequisites for participating in such co-choices. Our research group, consisting of two neonatal doctors and two ethicists, has an ongoing project where we have interviewed both health professionals and parents at St. Olavs Hospital about this.
Most have responded that parents should be included in the decision-making process, but that they rarely have sufficient knowledge, experience, time for reflection or emotional stability to be able to bear the burden of making such a decision alone.
As long as there is life, is there hope?
The birth of an infant at the limit of viability often comes suddenly. If there is hope for survival, most parents will instinctively want their child to be offered all possible treatment. It will consequently be difficult for parents to refuse treatment offered by healthcare professionals, even if the long-term consequences of the treatment are uncertain.
Without life-saving treatment, the infant will die quickly, and once life-saving treatment has been initiated, studies have shown that it can be difficult to stop this treatment. As long as there is life, there is hope.
So, how can we find a good way to enable parents to take part in a decision to treat or not?
Our proposal means that the people involved must make an active choice to continue life-saving treatment.
Parents are at the mercy of health professionals to involve them, and to make it possible for them to learn more about the situation and have time for reflection. If there has not been enough time before the baby is born, it will be necessary to start life-saving treatment at birth.
How can we keep the decision open, and make it easier, both psychologically and ethically, to stop life support later?
Our proposal for the decision-making process
We have proposed a way to solve this that we have explained in more detail in a recently published article in the American Journal of Bioethics:
The first part of the proposal is that life-saving treatment at birth should not be considered a binding — but only a preliminary — decision. The purpose is to give the parents time to consider the situation so that they can be involved in a real shared decision.
If the infant survives birth and the first few days, the parents are given the opportunity to get to know their baby, and to see what the treatment entails. They will also have the opportunity for conversations with various professionals, and with their loved ones.
The second part of the proposal tries to balance the driving force to always want to save lives and to continue treatment, against the obligation to do no harm.
Since we by default start life-saving treatment at birth, we suggest as a counterweight that the treatment be withdrawn by default after a week, as long as the child’s prospects are still very uncertain.
In current practice, it is not uncommon to consider withdrawal of treatment if complications arise, such as severe cerebral haemorrhage. But even without these kinds of complications, the prognosis will remain very uncertain for children born in the grey zone. Together, however, parents and health professionals can decide that it is right to continue.
Better to make an active choice?
In other words, our proposal means that people must make an active choice to continue life-saving treatment. If one does not make such a decision, the standard treatment for very uncertain prospects will be to let the child die after a week.
We believe that it is ethically correct to give parents the opportunity to participate in decisions that will affect the rest of their lives. They then need the time and space to absorb their new situation. With good guidance from health professionals and time for reflection, we want to give parents of babies born at the limits of viability the conditions to be able to participate in these important and difficult decisions.
Reference: (2021) Postponed Withholding: Balanced Decision-Making at the Margins of Viability, The American Journal of Bioethics,