While we draw the line at 22 5/7 weeks for offering active resuscitation where I work, what does one do when the family requests resuscitation prior to that point. While I am a clear fan of social media, one consequence of having such widely available information at our fingertips is that families may already know before you come to speak with them that were they only to have been born in another place like Montreal, the cutoff would have been lower. When faced with such demands what does one do? Well, in the case of my own experience it was to give in to the demands of the parents. While I certainly discourage such heroic attempts, what is one to say when the family having received your opinion states “I want everything done”. Informed consent is a tricky one in that if you approach a family for informed consent and they refuse to accept your desired direction of care where does that leave you? It leaves you with informed refusal and if we are being fair to our families we have to accept that informed refusal is just as important as informed consent.
The truth is informed refusal has been recognized as being critically important to decisions in patient care for many years. Previous papers on the subject include a nice review by Ridley DT, Informed consent, informed refusal, informed choice–what is it that makes a patient’s medical treatment decisions informed? What this really comes down to is a patient’s right to personal autonomy and self determination. Does a parent in this case have the right to do what they want even in the face of dismal odds? Furthermore where are we placing the importance of values? Is it physician or patient centric? In the physician centric world, after we impart our experience and wisdom we expect the patient to generally follow through with what we are steering them towards in cases such as this. Informed consent of course is meant to be free of coercion but let’s face it, when we truly believe something is fairly futile are we honestly playing an impartial role or using our tone, body language and choice of words to direct families down the path that fits with our own beliefs and values? I would offer that in most cases when we seek informed consent what we are really doing is seeking to pass along the justification for what we are wanting to do and then moving forward once obtained.
What do we do though when after hearing the pros and cons the family still opts to move forward and worse yet is in disagreement with our preferred plan. Well there you arrive at informed refusal. If after hearing our best transfer of information the family still wants to proceed what does one do? As a physician if I believe something is completely futile and I find myself in this position then I am truly at fault. Seeking informed consent in this situation was completely inappropriate. One should have simply said there is nothing that can be done.
The Montreal Example
Getting back to the example that started this piece, if a family knows that there are places in Canada (or let’s be honest, if I know there are survivors in Canada at 22 weeks) that resuscitate and have survivors then it isn’t really futile is it. I know many of you would say “but the odds are so stacked against the baby” and “they don’t know what they are getting themselves into” but what does one say in this circumstance when despite your best attempts the family still wants to resuscitate?
Therein lies the challenge. If we approach this as an opportunity for informed consent we need to accept that we may find ourselves face to face with “informed refusal”. Now I need to be careful here. I am not advocating a wide open optimistic approach to resuscitation at 22 weeks. What I am suggesting though is that if you find yourself coming into a unit somewhere in the next few months and find yourselves looking at a 22 week infant don’t jump to conclusions! Did the family despite all the warnings want this? Don’t leap to the thought that the Neonatologist is pushing for this but rather it may indeed be a case of a family advocating for their child against all odds. It may not be something that we agree with in many cases but are we thinking from the perspective of the family or our own value system?
Good article. Our issue with our twins, one being diagnosed with a “likely” terminal illness, the other being perfectly healthy, we demanded doctors move forward. at that point during their debate over allowing us to move forward or not, we were advised that it had turned into an ethical issue. risk one healthy twin over the very sick twin?? do they intervene or not? i think, for the most part, many families situations become ethical issues. and the questions was, where do they draw the line??
I, too, struggle with the end of paternalism. While I don’t believe we should be overly aggressive in resuscitation at the edge of viability, I do believe that the family, with a good bit of counseling, can choose a trial of life. They have to understand, and I have to remember, that the odds say the baby will die. But if the parents feel they had some say, some control, some part of the matter, I think they can have a better parting experience. Perhaps, we should learn to offer and navigate through a good death experience after a trial of life rather than telling them there’s nothing to do.
That was extremely well said. Thank you so much for putting it in those words
Hi Michael – so glad to see this post. I found myself in this situation very recently. My experience made me realize more than ever how powerful words can be – how much benefit and harm they can do.
The CPS recommendation regarding resuscitation of extremely preterm babies addresses this questions but only in a very limited fashion. However it uses the words « recommend » or « not recommended » and does briefly point out that families may make decisions against recommended management. Where is the line? The 23 week working group here in Edmonton were very clear that families wished to have more autonomy on decision making, having a clear understanding that pregnancy dating has some associated inaccuracy, individual variables affect risk of morbidity and that there are survivors out there. In our centre the words « offer » and « not offered » have started to be used (not by me)… which has, unfortunately, led to some healthcare providers feeling that a clear line has been drawn in the sand (23 weeks) and some will refuse to even do consults prior to that date. We are then sometimes caught in the situation where labor does indeed progress and families no longer have time for discussion and reflection.
What is even more tragic is the snap judgements that some individuals make about the decisions made in the heat of the moment. We need to support each other more in those moments, not less…
Amber we have had similar experiences. I think if we are honest though with gestational age dating we have to accept the inaccuracies that come with it. Unless there has been assisted reproduction even best GA dating can be +/- 5 days. If a woman comes in today at 22 +6 who am I to say she isn’t really 23 +4? Also is it fair that if she shows up at 8 PM that in 4 hours I would arbitrarily counsel her differently? I think there is a hard line such as 20 weeks. I would even say at 21 weeks I would be hard pressed to act (unless there was evidence dates were off and the fetus was say 800g). Twenty two weeks though really presents a challenge especially when you have a family that wishes to pursue.
But what about the baby? What about the pain from the multiple procedures it must undertake to survive. And what is “survival”? What about quality of life. I understand that some 22 weekers have survived, and I totally understand that their parents want everything done for them. But I do wonder if they truly understand just how difficult a life it is for their newborn baby.