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Hi, and welcome to this post. I look forward to discussing this topic during the upcoming UBEC. Please find some quotes from NICU nurses within our unit regarding resuscitation at 22 weeks' gestation (grouped along themes with obvious overlap). These are excerpts given the length of responses. Names are redacted for privacy.
Education:
"Our unit had a soft roll out in caring for this patient population due to COVID. We weren’t able to go to Iowa after hearing that MD speak at the VNPC conference pre-COVID, as planned, and therefore didn’t have the LIP, RN, RRT buy-in + full education + opportunity to provide feedback prior to this going live. It doesn’t feel good to not know about big changes, the rationale, and not receiving education on how to actually care for 22 weekers and what they may need (vs 23+ weekers)."
"What resources does Iowa have (or other small baby units) that we don’t and need that would be optimal as we care for this patient population? It doesn’t feel great to be doing the best we can do at the moment if there are things we could be doing better to help this population succeed (small baby pod/dedicated team, developmental care specialist, family support groups/unit psychiatrist, etc.) Are our 23/24/25weeker outcomes good for morbidity and mortality? This would be great to understand."
"If we are going to do this, we need to do it well. Meaning - much like they said - I wish we had clearer protocols or paths for our littles (<25 wks)."
Communication:
"I think understanding clear plans of care and knowing there is clear communication from LIP to RN and LIP/RN to family really would help avoid some of this distress. This clear communication ideally would include current patient status, parental wishes, code status, outcome discussions as able, and what has been discussed (and documented)."
"Back to communication—the nurses and those at the bedside need to understand what has been discussed in prenatal consults and post-birth from the medical team and parents. We are the ones at the bedside with the often grieving, stressed, state of shock, raw families in the acute phase and want to be of most support to them. We want to be realistic with them, as well. It would be vital to clearly document discussions (as we have discussed) in some sort of plan of care note (or have access to prenatal consult notes that we are working on) so that the game of telephone doesn’t occur and everyone is on the same communication page."
"Communication is a big opportunity here but this goes for any challenging case - as I know you know well. Nursing often feels like we aren't honest enough with families - in terms of painting a full picture of the life that's ahead and being honest with ALL the options they have, to include lovingly redirecting."
Palliative Care:
"On the palliative note, I have met so much resistance in including them with different patients when we should be embracing their specialty. Everyone has in their head they are there for only the active redirection of care but they are such an amazing resource and are so well spoken in helping the families to understand the reality."
"Lastly, involving palliative and discussions for redirection seem to have different thresholds for different providers which can give those at the bedside whiplash. I know every patient is different, and different families have different values/needs, but it’s hard when even within one week and a team changes plans can change despite the same patient status and parent wishes."
Changing Providers/Thresholds/Biases:
"The inconsistency from provider to provider is challenging - and frankly maddening. It's also confusing to the family. The last 22 weeker I cared for was offered things that were then taken away after sign out. Whiplash is a great word for it - and if nursing is feeling the whiplash, I can only imagine the trauma we cause the family. Often providers set 'a line' for care with these 22-23 weekers, yet the line is constantly moving. This goes for what is offered at delivery through the lifespan or until stability."
"Different LIPs have different ideas regarding how far to “escalate” care and this mentality trickles into the RN bedside understanding. We don’t like to feel like we are doing things TO the patient and it can feel like that when these very critical/barely viable patients take all the manpower, resources, procedures, etc. to care for them. We like to feel like we are doing things FOR the patient and family, so understanding study data and outcomes data would be vital to us understanding that we are doing ALL. THE. THINGS for an overall hopefully positive benefit. It would be crucial to relay to staff that these patients would routinely require TONS of support and that is the normal course (and not doing extenuating measures to prolong a life, for example)."
Selected Quotes from Mark Mercurio and Annie Janvier:
"This self-fulling prophecy regarding survival and treatment of extremely preterm newborns was first described 15 years ago, but misuse of survival statistics for policy and decision-making remains a concern." - Mercurio, AJOB 2020
"Future physicians seem more predisposed to saving a child with a pre-existing severe disability than rescuing a child without a disability, but who will be left with the same level of disability if he survives" Janvier, Mercurio, J Perinatol 2013
"Basing ELBW guidelines on eGA alone will inevitably lead to such injustice. At one point, perhaps, it was the best we could do. That is no longer the case, and it is time we moved beyond eGA alone as a resuscitation criterion." Mercurio, J Perinatol 2020
"Justice, writ large, is not contingent upon eGA or BW in so much as whether the possibility of benefit exists, and the commitment to weighing proportionate goods and harms lies with the continuum of care going forward in the NICU." Mercurio, J Perinatol 2020
Lastly, this post will close with excerpts from an interview with a parent of an infant born at 22 weeks' gestation. Notably, this infant is doing well, so the responses are obviously biased. However, the parent does allude to the fact that she was prepared for a negative outcome from counseling. The two questions this mother responded to are, What was your experience like? and Do you have any regrets? Permission was granted to use these audio clips in this forum. Please find the audio clips here:
Alternatively, you can go to the home page and click on Audio Clips to hear them.
Thank you for taking the time to provide care to our patients. References listed below.
Pete
References:
Mercurio M, Carter B. Resuscitation policies for EPT newborns. J Perinatol. 2020
Mercurio M. The moral status of newborns. AJOB. 2020
Janvier A, Mercurio M. Saving versus creating. J Perinatol. 2013
Not quoted but my favorite paper regarding the moral status of newborns:
Janvier A, et al. Nobody likes preemies. J Perinatol. 2008