Virtually every popular media site and especially those dedicated to covering the world of Obstetrics and Neonatology have been ablaze with discussions on the NEJM paper Between-Hospital Variation in Treatment and Outcomes in Extremely Preterm Infants. Since this publication, numerous blogging sites have similarly expanded on the coverage with testimonials of success stories of infants born too small or too young who survived and in most cases nearly intact.
Other posts are even more sensational, claiming that the infants have done extremely well and are in fact normal and healthy. The stories capture all of our attention and as feel good pieces give us pause to reflect on the tenacity of our beliefs either for or against resuscitation of these patients. Even more powerful are those instances when our health care teams experience a good outcome at these gestational ages. These types of cases challenge even the most ardent individuals that as a rule we should not intervene before 24 weeks.
How Likely Is A Good Outcome at 22 & 23 weeks?
What we have to remember though is that at least for the 22 week infants < 10% of those reported in the US cohort survived without moderate or severe disability and in the case of the 23 week infants these numbers although better, gave a 1/6 chance of surviving without that outcome. Flipping this number on its head to present a glass is half empty argument, there is a 5/6 or an 83% chance that a child born at 23 weeks who is actively resuscitated will either die or be left with a moderate or severe disability. The blog posts from this group of parents are far less common, although I have no doubt many of these parents were happy they at least tried. Had they not they would have been left wondering for the rest of their lives “what if”?
The purpose of this post is not to debate the rightness or wrongness of the desire to resuscitate or not. Rather I would like to discuss the fallacy of thinking that informed consent plays any role in most of these cases. All too often clinicians hide behind the veil of “informed consent” as justification for the family choosing to move forward with the decision to try to resuscitate these small infants. Is that what is really happening though in most cases? Sadly, in the nearly 12 years I have been in practice in these circumstances I suspect the conditions for true informed consent have been absent more often than not. Yet the Canadian Pediatric Society lists as the third recommendation in the statement “Counselling and management for anticipated extremely preterm birth”
“Decision making between parents and health professionals should be an informed and shared process. Decision aids may be helpful for parents. (Strong Recommendation)”
The issue lies in the criteria to obtain informed consent.
The Merriam-Webster Dictionary provides this definition:
“A formal agreement that a patient signs to give permission for a medical procedure (such as surgery) after having been told about the risks, benefits, etc.”
Unless a family has previous experience with a baby born at 23 or 24 weeks (outcomes after that become quite different), or they themselves work in the field of Pediatrics and have seen the range of outcomes that these children experience, how can they really know what the risks and benefits are?
As a young medical student I recall being told time and time again to be careful about the use of medical jargon. Rather, ensure that you use lay terminology that the parents can understand, in order to ensure that informed consent can be obtained or that the family understands the clinical course of their child. How many times have I talked to families using such words of wisdom only to think in the back of my mind; “do they really understand what I am saying?”.
What do they know of chronic lung disease, PDA, IVH, ROP and a host of other problems? What can they possibly know what their lives will be like in 2, 5 or 10 years down the road should their infant survive but with a host of major medical issues? Add to this, that in many cases there is little time for discussion as the mother presents with rupture of the membranes and goes on to deliver within 48 hours of presentation and often an even shorter time frame. Furthermore, the history of the pregnancy can be extremely motivational in helping a family decide what course is right for them. How does the mother who has had three rounds of IVF perceive the situation compared to the 16 year old who had an unplanned pregnancy. Clearly the psychological factors at play must have a tremendous influence on the decision.
Many parents are simply not in a state to receive the information even if it is presented well.
A study by Boss R et al suggests that what we say has very little impact on the parental decisions (Values parents apply to decision-making regarding delivery room resuscitation for high-risk newborns). In this paper, 26 mothers responded to a questionnaire at a minimum of 10 months after the death of their infant who was born between 22 and 25 weeks. After being asked about the discussions they had with their Neonatologist and Obstetricians these were the four main points uncovered.
1. Parents rarely perceive that there are options for delivery room resuscitation. They recall being told information but rarely that compassionate care was even an option even if this was documented in the chart.
2. Physicians’s predictions of morbidity and death are not central to parental decision-making regarding delivery room resuscitation. In essence the parent’s “gut instinct” which was nearly uniformly positive guided their decision.
3. Religion spirituality and hope are the primary values that parents apply to decision-making regarding delivery room resuscitation.
4. Parents feel abandoned without physician hope and compassion. There was mistrust of doctors who only emphasized the negative without a sense of emotion. Relaying the facts is not enough.
When under such stress is it possible for families to weigh all of the true risks and benefits and come to a conclusion that satisfies the requirements for informed consent? Given that to do so requires that an individual be in a state that allows them to process this information and take their time in coming to a conclusion I think in most cases the answer is no.
Planning a Path Forward
If your centre is planning to cross over the threshold of 24 weeks there must be a coordinated plan between the delivering obstetrician, neonatal team and family. Most parents are in no position to truly appreciate what we are telling them either because of the emotional frightened state they are in or because the overpowering urge to “do everything you can” takes a front and centre position in their mind. All we can do as the Health Care providers is to provide them with as accurate information as we can and support each family after they make their decision. Once that decision is made we must also realize that once we embark on a path it is not permanent. If the condition of the newborn is such that survival without severe disability becomes increasingly unlikely we owe it to the whole team (including the family at the centre) to revisit what would be the best course of action.
“In most cases their minds were made up before you walked in the room.”
Yes. And, after these “discussions”, we need to provide support that goes further than what the doctor, nurse, social worker, and spiritual care provider can offer.
What kind of support are you suggesting specifically? There is no question they will need support regardless of the outcome and in the case of a survivor with disability for many years to come.
I agree with your analysis of informed consent as applied to this scenario and would suggest it extends far beyond the extreme pre-term infant to infants and children in general. As a critical care nurse working with both neonatal and pediatric patients I’ve often encountered families in the most dire of circumstances make choices that will almost definitely still arrive at the same outcome that doing nothing would have, but at great expense to both patient and family. Weeks or months of increasingly aggressive treatment for conditions incompatible with long-term survival may provide us with job security but the price, in my opinion, is too high. I have no solutions, only more questions. Thank you for a thought-provoking post.
And thank you for such a well articulated comment. You are absolutely correct
As a provider in women’s health, I see little that can be done to remedy the situation. I would offer that discussing the potential for these outcomes during prenatal visits, classes, or in literature provided to parents early in the pregnancy might help with the issue. However, when I had an open discussion about this with my colleagues I was met most often with “we can’t scare the parents that early on” or “that would give them severe anxiety.” I fear as well that the same decision making you presented above would prevent couples from reading the article or thinking it could ever apply to them.
I recall a video about preterm resuscitation shown during nursing school which presented this issue beautifully but was again deemed too harsh to show families.
What then is the recourse? I’m not sure, but perhaps informed consent in this case is not a possibility.
I think that part of the solution is if there is time showing a video such as you describe which has a variety of outcomes both good and bad. Sometimes a picture is worth a thousand words and probably will resonate more.
I first arrived at the hospital with preeclampsia at 23w+2d. The first doctor who spoke with me about our options woke me at 3am when I was alone and pressed extremely hard for palliative care, which she described as wrapping the baby in a blanket and holding it while it died. She barely mentioned resuscitation, even though it was an option at that hospital if parents requested it, and what she did say painted it as a cruel thing to do to a baby who would probably die anyway. She more or less demanded I make a decision right there, without my husband, and without being able to think about it.
Even after my husband and I had talked it over, I never felt comfortable sharing our decision with the medical staff. Despite the doctor’s predictions, I not only made it to 24 weeks (the gestation at which that hospital automatically gives full medical care for all babies), I made it to 26w+1d before I had my son. We spent 166 days in the NICU before he died. During my time in the NICU, and through my involvement with the parent advisory since then, I have met a lot of families and a lot of preemies. I’ve met preemies who grew up without any issues, even 23 weekers. I’ve also met preemies who have significant issues.
I don’t believe that true informed consent is possible. But that’s as much an issue with the doctors as with the parents. Working in a NICU is not the same as having your own baby in the NICU, no matter how much you care for your patients. Trying to convey a lifetime of medical knowledge and experience to a parent is as hard as conveying the emotional experience of a parent to someone who only works there. Each family has a different set of experiences and beliefs prior to being in the situation. They will be making an impossible decision under stress. There is simply no way to know what their NICU experience or outcome will be, nor what medical developments will happen during the lifetime of their child. Without this knowledge, you cannot truly be informed about the consequences of your decision. Yet even without real informed consent, it should still be the decision of the parents, because they will be living with it.
If I was in the same situation again, I would not hesitate to demand care for my 23 weeker. I have seen how bad it can be… I’ve lived it. I felt it was walking through hell. Yet I’d still do it again, for that sliver of hope, and for the love that every one of those babies brought to their families.