Do we really need a position statement?
There is no position statement of the CPS about counselling parents when their child presents with meningococcal disease. There is no position statement for the child with serious brain trauma.
A position statement for ethical decision making could be general, recount the basic principles that the society feels are important in making decisions for incompetent children, and discuss how to counsel, how to communicate, how to aid families to make difficult decisions. At the same time the statement could emphasize that all children, impaired or not, are of value.
Oh wait a minute. There already is one. It is called ‘Treatment decisions regarding infants, children and adolescents’ and is a good general statement of some principles that the CPS feels are important for making difficult decisions.
Why is this particular question, the extremely preterm delivery, considered to be so different that a specific position statement is wanted? It is true that perinatal decisions involve more than one specialty, but so do those for children who move from the emergency room to the PICU, or who have serious cerebral malignancies and need intensive care.
If we suppose that a position statement is for some reason considered essential by the board of the CPS, how should it be developed and what should it include?
Firstly I think that any position statement which has potential impacts on how a particular group of patients are treated in our society should be developed in collaboration with those patients and their representatives, in this case their parents. I think the time is past when learned societies write these things and then present them to their colleagues as if the affected persons, the patients and their families, are passive consumers of what we produce.
I know in the CPS position statement it is stated that ‘parent advocates’ were consulted, but who they were, and how and when they were consulted is not clear. I think it should be expected that parents and parent groups be included from the very start of writing a statement such as this, and their contributions and opinions should be explicit.
As for content, perhaps a statement could usefully be addressed to providers in non-tertiary centers, and recommend situations in which consultation with a regional obstetrics and neonatal provider are recommended, with a clear analysis of the limitations of gestational age estimates. It should include an acknowledgement that transfer to a tertiary care center and administration of antenatal steroids do not mandate active intervention, rather they allow the opportunity to have the dialogue with parents. It should ensure that all patients are considered individually, without restriction of arbitrary gestational age thresholds, which do not take into account the complexity of these situations, and are not necessarily consistent with the values of every family (or every physician).
It could note that a decision for active treatment does not mandate a cesarean delivery, and that the morbidity of a cesarean delivery is a significant substantial risk that needs to be put in the balance by the family, but that an arbitrary cutoff at which cesareans are warranted is also unethical, cesarean delivery may be reasonable at higher or lower gestational ages depending on the values and life situation of the mother.
A guideline should state that infants born at extremely low gestational ages have a reduced survival, but should emphasize that at every gestational age the majority of the survivors are not severely impaired and that profoundly impaired survivors are unusual. It should note that extremely preterm infants have almost universally a good quality of life if they survive, including those with impairments.
An appropriate position statement would perhaps discuss the resilience of children and their families, that families adapt to hardship as well as to ease, that life with an impaired child is considered enriching by most families, and that families need more support to help them with the costs and difficulties that arise when raising children who have impairments. It should note that decision making for the extremely preterm infant should be an on-going dialogue with parents.
Such a discussion should be enough. There is no need to put in any position statement thresholds at which intervention is recommended or not. Any more than the society would consider a position statement which said that after head injury active treatment is not recommended if the motor vehicle was traveling at more than 35 kilometers an hour, as noted by a spokesman for BLISS, a charity in the UK for premature infants.
These are my suggestions for a starting point for a new set of recommendations for a CPS guideline, I would hope that considerations such as these could form the basis for an open process, involving all the stakeholders, especially parents, and including parents who lost their babies, parents involved in parent support groups, independent individuals, and maybe even neonatologists who have also been parents of preterms!! :
- If a woman develops signs which may lead to extremely preterm delivery at more than an estimated 20 weeks gestation, consultation with the high risk obstetrical service at the regional tertiary care center is recommended.
- If the mother is thought to probably be at more than 22 weeks and zero days of gestation, administration of steroids and transfer to the tertiary center are recommended unless delivery is unlikely to be safely completed in time.
- Administration of tocolytic agents, steroids and transfer to a tertiary care center should not be considered to mandate provision of life-sustaining interventions (LSI) to the baby if they should be born, but rather to allow the opportunity to have discussions about the appropriate course to be taken while providing the best chance for the baby if the decision to provide LSI is taken.
- Discussions with the family concerning the provision of LSI should be undertaken by informed neonatology staff members, or by senior trainees under their direct supervision.
- Such discussions should describe the predicted mortality based on the overall evaluation of the clinical situation of the mother and baby, and recognize the inaccuracies inherent in gestational age assessment and estimated fetal weights from ultrasound, and take into account the sex, antenatal steroid provision, multiplicity, and presence or absence of chorioamnionitis, among other risk factors.
- Discussions regarding the provision of LSI should include an evaluation of the values and desires of the families, and should take into account the variations in those values.
- If there is a reasonable chance of survival then consideration of initiation of LSI and frequent re-evaluation should be the default approach. What is ‘a reasonable chance’ will depend to some extent on the values and desires of the family, but should follow similar considerations to older children, where contemplating the withholding of LSI is unusual if there is more than a 10% chance of survival.
- The large majority of extremely preterm babies do not need ‘resuscitation’ as generally understood (cardiac massage and so on) but require the provision of respiratory support, often simple respiratory support with positive pressure, with or without intubation. Providing such support at birth and evaluating how the infant progresses over the subsequent days may very often be the optimal approach for that infant and their family.
- The horrendous stress and profound uncertainties of threatened preterm extremely delivery make this one of the worst possible environments to make good decisions. Instituting LSI and then re-evaluating when more data are available (but no less stress!) often makes the most sense.
- Under certain circumstances confirmation of birth weight in the delivery room would be reasonable if there were previously agreed decisions about what to do if the baby weighed above or below a certain threshold. (This is because actual birth weight is a better predictor of survival than is estimated gestational age, and because estimated fetal weight, before birth, is quite inaccurate.)
- A decision to provide LSI of the infant does not mandate a cesarean delivery, even in case of fetal distress, the extra morbidity of this procedure for the mother means that the decision for the cesarean should be made by the mother with her obstetrician, taking into account her history and current clinical situation and her values and desires, as well as the predicted outcomes of the preterm infant.
- Parents should be informed that extremely preterm infants have a much higher frequency of significant long term neurological, developmental, and medical complications than babies born at term. That developmental delay is very common, but frequently improves over time, with about 1 of every 6 surviving children continuing to have serious intellectual difficulties by the time they reach school age, and that this proportion is very little affected by increasing gestational age. Despite such problems, former extremely preterm infants, and their parents, almost universally report that they have a good quality of life.
A guideline, developed with parents from a starting point such as this, would be so much more nuanced than ‘at X weeks of gestation give comfort care, at X + 1 or X + 2 consider active treatment, at X +3 always start active treatment’. I think a statement similar to what I have outlined here would be evidence based, could take into account the wishes and values of the family, and would give the guidance and also the freedom that doctors and families need in order to make the best decisions for the babies.